nh medicaid long-term-care program survey q1 … medicaid long-term-care program survey 1 / 155...

NHMedicaidLong-Term-CareProgramSurvey

1/155

6.17% 55

53.03%473

18.50%165

22.31%199

Q1Wouldyoudescribeyourselfas:Answered:892 Skipped:0

Total 892

Someonewho

currentlyusestheN...

Afamilymemberor

caregiver...

Someonewho

prov idesserv icest...

Someonewho

doesnotprov ideor...

0% 20% 40% 60% 80% 100%

AnswerChoices Responses

SomeonewhocurrentlyusestheNHMedicaidLong-Term-Caresystem

AfamilymemberorcaregiverorguardianofsomeonewhousestheMedicaidLong-Term-Caresystem

SomeonewhoprovidesservicestopeoplewhousetheMedicaidLong-Term-Caresystem

SomeonewhodoesnotprovideorreceiveMedicaidLong-TermCareservicesorsupportsbutwhohasaninterestinhowtheNHMedicaidprogramoperates

Please note before printing:this document is 155 pages long.


2/155

67.86% 549

38.44% 311

45.49% 368

33.75% 273

10.75% 87

4.94% 40

2.10% 17

13.47% 109

Q2Doyouoryourfamilymembercurrentlyuse(pleasecheckallthatapply)

Answered:809 Skipped:83

TotalRespondents:809

# Other(pleasespecify) Date

1 careproviderthroughvolunteerservices-mostlytransportation/visiting/telephonereassurance 12/9/20139:27AM

2 IobservemanyusersofmostoftheaboveservicesandthinkIhavevaluableinputbasedonthoseobservations.Youshouldconsiderasurveyforpersonssuchasmyself.

12/7/20134:23AM

3 familymemberisapplyingforSSDI 12/6/20134:33PM

4 myadultsonusesSSI,Medicaid,FoodStamps,FoodpantryinMichigan.wewanttomovehimtoNH 12/6/20133:34PM

5 Champva 12/6/20132:27PM

Medicaid

Medicare

SocialSecurityDisability

PrivateHealth

InsuranceMEAD

Program(MedicaidforEmployed...

Non-MedicaidServ ices

(likeMeal...

Veteran-DirectedHomeandCommunity...

Notapplicable

0% 20% 40% 60% 80% 100%


Medicaid

Medicare

SocialSecurityDisabil ity

PrivateHealthInsurance

MEADProgram(MedicaidforEmployedAdultswithDisabil ities)

Non-MedicaidServices(l ikeMealsonWheelsornon-medicalAdultDayCare)

Veteran-DirectedHomeandCommunityBasedServices

Notapplicable


3/155

6 Sonisbeingtreatedforamentali l lness;Insuranceisnotcoveringitalthoughitisacoveredservice.Receivingveryl i ttlefinancialcoverage.Wecannotunderstandhowfamiliescanremainfinanciallysecurewhentheyarepayinghundredsofthousandsofdollarsinmedicalhealthcarethatshouldbecovered.

12/6/20132:25PM

7 Provider 12/6/201312:42PM

8 Noinsurance 12/6/201312:09PM

9 Uninsured 12/6/201311:53AM

10 outofpocketformentalhealthservicesbecauseprovidersdon'taccepthealthinsurance 12/6/201311:24AM

11 mysonwil lneedmedicaidinhisfutureduetohisautism/adhd.Heis18andwesupporthimnow 12/6/201311:14AM

12 Localchurchminsiterwhointeractswithpeoplewithvariousmentalhealthneeds. 12/6/201310:01AM

13 public assistanceformentalhealthandotherhealthcare 12/6/20139:55AM

14 fuelassistancefoodstamps 12/6/20139:23AM

15 Localfoodpantryweeklyfoodbasket,KeeneCommunityKitcheneveningmeals3to5timesaweek(open6daysforonemealaday)

12/6/20139:18AM

16 Iworkinhealthcareanddoassistpeople(mostlyyouth)inaccessingservices 12/6/20139:12AM

17 IarrangedischargeservicesforpatientswithNHLTMedic iad 12/6/20138:52AM

18 IdohaveasisterinlawwhodoesuseMedicareServices 12/6/20137:58AM

19 AsaCountyCorrectionsfac il i tyweincarcerateindividualswhoareorwereonthestypesofservices. 12/6/20137:49AM

20 Unemployed-NoInsurance 12/6/201312:28AM

21 sectioneight 12/5/201310:56PM

22 charitablecare 12/5/20139:33PM

23 Workopportunitiesformydisabledteen 12/5/20137:54PM

24 Willbeapplyingshortlyforsocialsecuritydisabil i tyforalovedone 12/5/20137:50PM

25 applieddiscountatHospitalandDoctorforlowincomewithnoinsurance 12/5/20136:31PM

26 no,butIhaveachildwithamentalhealthdisabil ityandinthefutureshemightneedMedicaidinsurance

12/5/20136:19PM

27 SSI 12/5/20136:12PM

28 Localhospital 'sfinancialassistance 12/5/20135:56PM

29 Familymember 12/5/20134:08PM

30 SocialSecurityunderparentsretirement,usetobeSSDisabil ity,butmoreunderparentsretirement 12/5/201311:08AM

31 Healthykids 12/5/20137:29AM

32 Healthykidsgold 12/5/20137:23AM

33 SSI 12/5/20135:11AM

34 medicaidspenddown 12/4/20139:35PM

35 SSI 12/4/20132:51PM

36 WaiverPrograms 12/4/20131:51PM

37 (Thisismorethanoneperson.)Also,IambothafamilymemberANDaserviceproviderofMedicaidrecipients.

12/4/201312:09PM

38 IalsohavesomefamilymemberswhoareusingMedicaidservices. 12/4/201311:38AM

39 ANB 12/4/201310:05AM

40 Iamaproviderwhoassistspeoplewiththeseprograms 12/4/20139:12AM

41 cashbenefits,foodstamps 12/3/20138:15PM

42 ssi 12/3/20137:26PM

43 Railroadretirementfordisabledchildren 12/3/20133:23PM


4/155

44 SSI 12/3/201311:30AM

45 IconsultwithfamiliesapplingforMedicaidandactuallyapplyforthem 12/3/201310:50AM

46 serviceproviderofMedicaid 12/3/201310:43AM

47 Longtermresidentialschool 12/3/20139:23AM

48 Iworkwithc lientsthatusealloftheaboveservices 12/3/20139:05AM

49 DDWaiverServices 12/3/20138:14AM

50 Vocrehab 12/2/201310:50PM

51 Selfpaydental 12/2/20133:07PM

52 SSI 12/2/20132:22PM

53 SSI 12/2/20131:58PM

54 Iamacasemanagerforc lientsthatuti l izealloftheabove 12/2/20131:55PM

55 privatedentalinsurance 11/30/20131:46PM

56 railroadretirementfordisabledchildren 11/30/20131:01PM

57 havetopayprivatelyifwantassistance/respitefrom24/7careoftotallydisabledadult 11/29/20137:11PM

58 MedicaidWaiverforresidential&daysupportfrommyAreaAgency.ImoststronglyencouragethecontinuationoftheAreaAgencysystem,andthatpeoplewithlongtermdisabil ityneedsbeexemptedfromPhaseTwooftheMedicaidManagedCare.

11/29/201310:56AM

59 Medicaid-fundedcommunity-basedservicesandsupportsforindividualswithdevelopmentaldisabil i ties,administeredthroughmyareaagency

11/27/20138:47AM

60 Deceased 11/26/201310:14PM

61 Willl ikelyuseotherservicesasmychildprogressesintoadulthood 11/26/201312:14PM

62 InHomeSupports 11/26/20138:01AM

63 workwithresourcesforpeoplethatmayhaveaboveprograms 11/25/20131:49PM

64 CommunityBridges 11/25/201312:32PM

65 AreaAgency,525Supports,HomeHealthServices 11/25/20138:54AM

66 son 11/25/20138:40AM

67 SSI 11/23/201310:47AM

68 IhavestaffinmyhomeandtheytakemeouttocommunityservicesandeventsIvolunteerat 11/23/20138:30AM

69 Section8housingandSSI 11/23/201312:26AM

70 Sec.8housing 11/22/201311:49PM

71 Yet,my17yearolddaughterwithDownSyndromewhomisgraduatingnextyear(2014)isinneedofsupports,medically,socially,emotionallyandeducationally.

11/22/201310:15PM

72 socialsecurityunderFather'sbenefit&Tricare 11/22/20136:35PM

73 Inhomesupports,nursingsupport,dayprogramsupport 11/22/20136:04PM

74 notsurewhichshehasmedicareormedic iad 11/22/201312:25PM

75 workwithpeoplewhousealloftheabove 11/22/201312:09PM

76 waitingforSSDIdeterminationandneedtoapplyformedicaid 11/22/201311:56AM

77 AreaAgencyservices 11/22/201311:34AM

78 housingvoucherSectionVIII 11/22/201310:14AM

79 MyMRgrandsoniswaitingforhisMedicaidcardsohecanbecovered 11/22/201310:12AM

80 SSI 11/22/201310:03AM


5/155

Q3Medicaidlong-termcareservicesaredifferentthanthe"acutecare"orhealthcareservicesthatMedicaidalsopaysfor.Longtermcareservicesareusedbypeoplewithdevelopmentalorphysicaldisabilities,mentalhealthneedsorolderadultswhoneedassistancetostayintheirhomes.Long-term-careservicesincludeassistancewithserviceslike:-Activitiesofdailyliving(ADLs)-Instrumentalactivitiesofdailyliving(IADLs)-Personalcare-Respitecare-Supportivehousing-

Transportation-Assistivetechnology-Mentalhealthservices-Employmentassistance-TransportationassistancePleasecheckanyservicesyoumayreceivewithsupportoftheMedicaid

program.Answered:727 Skipped:165


6/155

61.49% 447

37.14% 270

42.78% 311

36.18% 263

42.23% 307

22.01% 160

32.87% 239

27.10% 197

26.69% 194

30.67% 223

26.96% 196



Healthcareserv ices

(acutecar...

Helpwithactiv itiesofdailyliv i...

Helpwithinstrumentalactiv ities...

Personalcarewitheating,...

Assistancewith

transporta...

Assistivetechnology

likea...

Respitecare

Supportedhousing

Employmentassistanceor

jobcoach

Mentalhealth

serv ices

Idon'treceiveanylong-term-...

0% 20% 40% 60% 80% 100%


Healthcareservices(acutecare)l ikedoctor'svisitsandmedications

Helpwithactivitiesofdailyl ivingl ikeeating,dressing,grooming,bathing

Helpwithinstrumentalactivitiesofdailyl ivingl ikeshopping,laundry,housekeeping,handlingfinances

Personalcarewitheating,dressing,shoppingorotherdailyactivities

Assistancewithtransportationtowhereyouneedtogol ikedoctor'sappointments,shoppingorwork

Assistivetechnologyl ikeawheelchairorscreenreaderoranotheradaptivedevice

Respitecare

Supportedhousing

Employmentassistanceorjobcoach

Mentalhealthservices

Idon'treceiveanylong-term-careservices


7/155

1 WeoperateCalebCaregiversoutofWhitefieldserving7othersurroundingtowns. 12/9/20139:28AM

2 Idon'tatthistimebutinthenearfuturemay 12/8/20134:55PM

3 DayServiceProviders(ie-EasterSeals,Lutheran's) 12/8/20133:18PM

4 Developmentallydisabledadultwhoresidesatcongregatel ivingfac il i ty(FarmsteadsofNewEngland,Hil lsboro)

12/7/20134:11PM

5 SpeciallyqualifiedSIGNING(ASLInterpreter)SupportPerson/Intervenoratalltimes 12/7/20139:06AM

6 Servicesavailableintheruralnorthernpartofthestatearemuchfewerandmuchfartherapart.TransportationisALWAYSanissue,Respitecareasfarasformalandnotafamilymemberorfriendishardtofind(oneadultdaycareonedayaweekinourarea)

12/7/20134:27AM

7 adultsonhasbi-polardisorder;anxiety;self-medicationissues;needforbi-polarmeds,andbothphysicalandmentalhealthcare

12/6/20133:36PM

8 Isupportandassistconsumersinhiringtheirownworkers. 12/6/20131:21PM

9 Mychildmayneedservicesatsometimeduetomentalheathissues. 12/6/20131:20PM

10 Iamaproviderworkingwithfolkswhowouldbeusingmostoftheseservices 12/6/201312:44PM

11 Mychildreceiveslong-termmentalhealthservices 12/6/201311:29AM

12 thesewil lbewhathewil lneed 12/6/201311:14AM

13 Mysonwil lbeeligibleforpartialdisabil i tyinthenearfuture. 12/6/201310:59AM

14 TheabovearetheonesIthinkmyfamilymemberreceivesnotme. 12/6/201310:35AM

15 Thoughmywork,Ifindthattherearelayersofneedwithregardtotheseservices.Often,age-relatedmentalhealthneedsareseenfirstassimplyelderlycare,andthementalhealthcomponentisseenassecondary.

12/6/201310:04AM

16 IhavecheckedtheareasthatIamawareofandthatImayhelporrecommendpeopletopotentiallyreceiveassistance

12/6/20139:14AM

17 Relyontheseservicesforpatientsbeingdishcargedforatertiarycarehospitalandtheseservicesenablethemtoreturntothecommunityratherthananursingfac il i tyorgrouphome

12/6/20138:53AM

18 AgainasaCountyCorrectionsfac il i tywehavemanyincarceratedoffenderswhoareorhavebeenusingvariousservicesasindicated.

12/6/20137:51AM

19 Mysisterusessomeoftheseservicesandcouldusemore-Idonotusethem 12/6/20136:15AM

20 DayProgramServices,NonetraditionalCounselingServices,CaseManager,PhysicalandOccupationalTherapyasneeded,Evaluations,dailymedicaltreatments,24hourcare,supervisionandsupports,eyeexams,dentalextractions,specializedPhysic ians,suchasendocrinologist,neurologist,dietic ian,otherspecializedservices,asneedee

12/5/20138:32PM

21 IamcurrentlywaitingtofindoutIfthefinancialhasbeenapprovedandwaitingonmedical. 12/5/20137:51PM

22 Yet 12/5/20137:51PM

23 PROVIDER 12/5/20137:14PM

24 Icanseemydaughterneedingtheseservicesinthefuture 12/5/20136:20PM

25 mysisterisintheGlencliffHome.SheisschizophrenicandhasParkinson'sdisease 12/5/20136:14PM

26 Supportedemploymentanddailysupervision. 12/5/20135:57PM

27 ProjectSEARCH 12/5/20135:47PM

28 alltheseanswersarebasedontheservicesmyfamilymemberreceives 12/5/20135:34PM

29 Mymotherismylagalguardian/caregiver.Il iveathomeandIam100%dependant.Iamblindandinawheelchair.TBI

12/5/20132:36PM

30 Ievaluatemanypeoplewhousemany,ifnotallbutrespitecare. 12/5/201311:55AM

31 Wereceiveadailyprograminthecommunityfor6hoursperday. 12/5/20138:32AM

32 Currentlytransitionservicesmovingintojobcoachingservices 12/5/20135:14AM

33 InmycurrentworkpoistionIworkwithseniors. 12/4/201311:39AM


8/155

34 20hoursofadayprogramperweek 12/4/201310:59AM

35 Iworkinahospitalwithpatientsandfamilieswhouseandneedlongtermcare. 12/4/20139:42AM

36 notapplicable 12/4/20139:22AM

37 Providerwhoassistspeoplewiththeseservices 12/4/20139:12AM

38 Grouplivingonfarm25otherresidentsin4personaptsEXCellentcareFarmsteadsofNEinHil lsboroNHModelisperfectformydaughter.sheissohappyandtoodifficultbehaviorallyforsinglehome.lovescontactwithotherresidentsandconstantcommunityopportunities.

12/4/20139:09AM

39 Childis9butwantinfoonwhereNhisgoingwithOTCprogram. 12/4/20138:34AM

40 Priortomyretirement,Ihadtheopportunitytoprovideservicestoolderadultswithmentalhealthneeds.Regardlessoftheirinsurancecoverage,MANYofthemcouldhavebenefittedfromanarrayoftheseservicesasneedschanged.Thechallengewasasystemthatencouragedtransitioningin/outservicesasindividualneedschanged.Thisbecomesevenmoreofachallengewhenthefocusisonsupportingthechoicetoremainathome.

12/3/20135:19PM

41 Althougheligiblefortheprogram,wedonotacceptthecharitysincethereisnofinancialneed.Webelievethefundsshouldbeallocatedtotheneedy.

12/3/201312:16PM

42 VerynecessaryfortheEmotionallyDisabledfolks.Weneedtokeeptheseservices 12/3/201311:31AM

43 serviceprovideroflongtermcare 12/3/201310:44AM

44 SonisresidentofCrotched 12/3/20139:32AM

45 Again,myc lientsreceivealloftheaboveservices 12/3/20139:06AM

46 Isupportfamiliesandindividualswhoreceivelong-term-careservices 12/2/20134:14PM

47 Theseservicesarereceivedbymyson. 12/2/20133:09PM

48 medicaidisoursecondaryinsurancebutwil lbecometheprimaryatsomepoint 12/2/20132:24PM

49 Iworkforaprovider 12/2/20131:56PM

50 Icoordinatethecareandservices. 12/2/20131:55PM

51 Idonotreceiveanylong-termcareservicespersonallywiththesupportoftheMedicaidprogram.However,Ihavereceivedlong-terncareservicesthroughinsurance,andmembersofmyfamilyhavereceivedMedicaidservices.

12/2/201311:59AM

52 Receivesdayhabservicesandresidentialservices 12/2/201311:52AM

53 Mydaughter,forwhomIamansweringthisquestionnaire,receivesa24/7modelof"homeprovider"whichcanbecalled"l i fesharingmodel".Hermentor/home-providerprovidesdayprogramming/activity/supportaswellasevening&night.Inthismodel,mydaughterisseamlesslyintegratedintoafamily,ratherthansegmentedintodaysupportandnightsupport.Thismodelhasimprovedbothhermentalhealthaswellasherphysicalhealth-markedly.

11/29/201311:00AM

54 MEMBEROFBOARDOFDIRECTORSFORADIRECTCAREORGANIZATION 11/27/20131:10PM

55 Mysonisschool-aged.Iexpecthewil lreceiveemploymentassistanceinthefuture.Wehavereceivedsomeinhomebehavioralsupportsinthepast.

11/27/20138:49AM

56 FamilySupportProgramthroughmyareaagency 11/26/20133:00PM

57 lnaservices,homeinfusions 11/25/201310:23PM

58 DayProgramatLakesRegionCommunityServices 11/25/20137:39PM

59 Iworkwithc lientsthatreceiveeldercareservicesandwithotherswithhandicappingconditions.Abarrierforthesepeopleistransportationesptomedicalappointments,appointmentsoutoftheirl ivingarea.Therearepeoplee.g.elderNepaliorotherrefugeesthatneedmorepersonalcarethananyprogramsallow.Housingisalsoabigneedwithunrealistic waitingl ists.Whatdoesonedowithapregnant24yearold,couchsurfing/homeless.IfIrefertoFITthedayIseethec lient,therewil lnotbeanyhousingavailablefor12months.

11/25/20131:54PM

60 workwithusersoftheseservices 11/25/201311:22AM

61 LongtermmedicalsupportsforSeizuresandBreastCancer.Supporttomaintainsocialandrecreationalconnections,casemanagementthroughAA,NursingPlanofCarethroughHomeHealthAgency

11/25/20138:59AM


9/155

62 SonisapplyingformedicaidinNHpreviouslyreceivedinVT 11/25/20138:41AM

63 Mysonis15andisundertheKatieBeckettwaiver.Hewil lbeinneedoftheseadultserviceswhenhetransitionsfromHighSchool.

11/24/20131:23PM

64 cooking,budgeting 11/23/20139:33PM

65 incomerestric tions 11/23/20134:17PM

66 notmyself,butmyfamilymembers.adultBrother(developmentallydelayed),adultsister(mentallyi l l),father(Alzheimers),son(pdd-nos).Mymotherhasbeendoingmostofthesupportforthefirstthreebutsoonitwil l befall ingtomyself&anothersister.Theselectedareservicesthatsomeoftheindividualscurrentlyrec ieve

11/23/20139:48AM

67 Theytakemetorecreationactivitiesandvolunteerjobs 11/23/20138:31AM

68 I'vebeenpayingoutofpocketforallservicesthroughChildren'shospital.Wasdeniedinpastforservices.

11/23/20136:24AM

69 Shedoesnotreceiveanyyet,butwil lneedtheabovecheckedwithintheyear. 11/22/201310:17PM

70 AdultIncontinenceProductsMedication 11/22/20136:24PM

71 AssistanceinrecreationalactivitiesAssistanceincommunityinvolvement 11/22/20136:06PM

72 Shecannotbeleftonherownforsafetyreasens. 11/22/20133:40PM

73 IamdisabledandhavemyhealthcarethroughMedicaid.Il iveinanelderly/disabledapartmentbuildingwithfinancialsupportthroughNHHousing.Idon'tknowifthatqualifiesasSupportedHousingornot.NeverthoughtofmyhousingasbeingthroughMedicaid.

11/22/20133:30PM

74 Inhomesupportwaiver 11/22/20132:28PM

75 Therearethosethatmaytrulybenefitfromanyoftheaboveservices,yetasanemployeeIalsoseeawasteoftaxpayerdollars.

11/22/20131:51PM

76 Self-directedservicesthatencompasstheoptionsabovewiththeexceptionofacutecare 11/22/20131:49PM

77 Adultdayservices 11/22/20131:35PM

78 Dayprogram 11/22/20131:07PM

79 ina24/7supervisedhomesettingwithafamily 11/22/201312:26PM

80 Idon'thavemedicaidyet 11/22/201311:59AM

81 MydaughterhasaKatieBeckettwaiver. 11/22/201311:26AM

82 Goalsundertheself-directedservicesthroughtheareaagencytoworkonactivitiesofdailyl iving,buttheydonotoccureveryday.

11/22/201311:03AM

83 useofacane 11/22/201310:48AM

84 fuelreimbursement 11/22/201310:12AM

85 Recreationisveryimportant 11/22/201310:05AM


10/155

15.82% 97

7.99% 49

26.43% 162

49.76% 305

Q4HowfrequentlydoyouuseservicespaidforbytheNHMedicaidprogram?


Total 613

Notveryoften

Severaltimesper

year

Everymonth

Daily

0% 20% 40% 60% 80% 100%


Notveryoften

Severaltimesperyear

Everymonth

Daily


11/155

9.01% 60

43.99% 293

24.02% 160

24.17% 161

23.57% 157

Q5WhousesservicespaidforbytheNHMedicaidprogram?Answered:666 Skipped:226


Me

Mychildorchildren

Afamilymember

SomeoneIrepresentasaguardian

PeopleIworkwithor

for

0% 20% 40% 60% 80% 100%


Me

Mychildorchildren

Afamilymember

SomeoneIrepresentasaguardian

PeopleIworkwithorfor


12/155

68.30% 461

23.56% 159

12.30% 83

34.81% 235

13.33% 90

Q6WhichMedicaidLong-Term-Careconsumerpopulationdoyouoryourfamily

memberrepresent?Answered:675 Skipped:217



1 Personswithdisabiitiesalso 12/7/20134:28AM

2 none 12/6/20138:20PM

3 ThePoor 12/6/20131:55PM

4 schizoaffectivedisorder 12/6/201312:04PM

5 antic ipateneedingmedicaidlongtermcarefor19yearolddaughterwithmentalhealthneeds 12/6/201311:25AM

6 Ourchildmayhaveanacquiredbraindisorder,butithasnotyetbeendiagnosed. 12/6/201310:33AM

7 Moreoftenelderly,andthebroadermentalhealthneedsofmiddleage,andteens. 12/6/201310:05AM

8 includingsubstanceabuse 12/6/20139:30AM

9 Mostlyyouth 12/6/20139:15AM

10 Mixedpopulationwithmultipleneedsasl istedabove 12/6/20138:55AM

11 mentalhealthneeds,whomayhavephysicalordevelopmentaldisabil i ties 12/6/20138:54AM

12 familymemberswithmentalhealthissues 12/6/20137:59AM

PeoplewithDevelopmentalDisabilities

PeoplewithPhysical

Disabilities

PeoplewithAcquiredBrain...

PeoplewithMentalHealth

Needs

TheElderly

0% 20% 40% 60% 80% 100%


PeoplewithDevelopmentalDisabil ities

PeoplewithPhysicalDisabil ities

PeoplewithAcquiredBrainDisorders

PeoplewithMentalHealthNeeds

TheElderly


13/155

13 IntheCountyCorrectionssytemitcouldbeanyofthese. 12/6/20137:52AM

14 schizophrenia 12/6/20137:23AM

15 MyMomwantstostayinherhome. 12/5/20137:51PM

16 None 12/5/20137:15PM

17 FosterCare 12/5/20136:25PM

18 mydaughterisdiagnosedwithaseriousmentali l lness 12/5/20136:21PM

19 Autism,retardation 12/5/20132:43PM

20 asaserviceprovider 12/5/20138:47AM

21 Austistic 12/4/20139:04PM

22 N/A 12/4/201312:48PM

23 Alloftheaboveinworkposition 12/4/201311:39AM

24 PeoplewithAddiction 12/4/20139:28AM

25 smith-Magenissyndrome-autistic l ike-neurologicalbehavioral-requires24/7help 12/4/20139:11AM

26 Bothphysicalanddevelopmentaldisabil i ty;doyoureallythinkfolkshaveonlyone? 12/4/20136:50AM

27 autism 12/3/20138:17PM

28 Idonotget/useMedicaid 12/3/201312:16PM

29 over65 12/3/201312:05PM

30 Alloftheabove,butmostlypeoplewithdevelopmentaldisabil i ties 12/3/20139:07AM

31 seizures 12/2/20136:16PM

32 Iworkwithalltheaboveconsumerpopulations 12/2/20134:12PM

33 Alloftheabove 12/2/20131:55PM

34 PeoplewithChronicHealthConditions 12/2/201312:00PM

35 Peoplewithchronichealth 12/2/20139:14AM

36 Prenatals,individualswithMS 11/25/20131:56PM

37 alltheabove 11/25/201312:13PM

38 Mysister/wardisinneedformedicalsupportthroughouteveryday 11/25/20139:01AM

39 DeafandHardofhearing;speechandlanguagedelays 11/23/201310:20PM

40 Alsomanymedicalproblems 11/22/20135:04PM

41 Iworkwithalloftheabovebutelderlypredominently 11/22/201312:10PM


14/155

4.63% 29

17.25% 108

14.38% 90

42.81% 268

18.21% 114

15.50% 97

7.35% 46

8.95% 56

6.23% 39

4.63% 29

Q7Whatageistheperson(eitheryou,yourfamilymemberoryourward)who

receivesLong-Term-CareservicesthroughtheMedicaidprogram?


1-5

6-17

18-21

22-39

40-49

50-59

60-64

65-74

75-84

85+

0% 20% 40% 60% 80% 100%


1-5

6-17

18-21

22-39

40-49

50-59

60-64

65-74

75-84

85+


15/155



16/155

45.43% 293

36.43% 235

18.14% 117

Q8Haveyoueverbeenonawaitinglistforservices?


Total 645

Yes

No

Notsure

0% 20% 40% 60% 80% 100%


Yes

No

Notsure


17/155

29.88% 173

55.79% 323

81.00% 469

48.53% 281

49.57% 287

51.81% 300

Q9WhatdoyoulikeaboutthecurrentNHMedicaidLong-Term-Careprogram?

(Chooseallthatapply)Answered:579 Skipped:313



1 MEADisawondeffulprogram.thisprogramhasprovidedmethemotivationtowork.providingmydailyPCApersonalcareattendencesallowsmetol iveandworkasindependentaspossible.

12/10/201310:24AM

2 IwishtheStatewouldacceptgrouphomesasaWONDERFULalternativetoprivatehomes... 12/8/20134:59PM

3 Idonotuti l izetheprogram,butthinkitisimportantthatindividualshaveachoiceinprovidersandvenue

12/7/20138:25AM

4 MostoftheaboveapplyforthepeopleIhaveobserved:theelderly,disabledandtheirfamilymembers.

12/7/20134:30AM

5 Weareabletothink"outsidethebox"toprovidetheservicesthatwil lbesthelpmydaughterandmeetherneeds.

12/6/201310:49PM

6 section8housing 12/6/201312:05PM

Iunderstandhowitworks

Itw illpayformostofthelongt...

Icouldnotaffordthe

carethat...

Ihaveachoiceofhealth,...

I(ormyfamily

member)wo...

Igetpeaceofmind

0% 20% 40% 60% 80% 100%


Iunderstandhowitworks

Itwil l payformostofthelongtermcareservicesthatI(ormyfamilymember)needs

IcouldnotaffordthecarethatI(ormyfamilymember)needswithoutit

Ihaveachoiceofhealth,in-homeordirectsupportproviders

I(ormyfamilymember)wouldnotbeabletostayinmy(their)homewithoutit

Igetpeaceofmind


18/155

7 Ican'taffordhealthcare,yetdon'tqualifyforassistance. 12/6/201311:57AM

8 Mysisteris81andisinaLTCfacil i tyandhasbenefitofMedicareLCservices. 12/6/201311:49AM

9 Reallydonothaveenoughinformationtorespond. 12/6/201310:06AM

10 Mybrotherisadevelopmentallydisabledperson(down'ssyndrome),hehasl ivedathomewithmyelderlyparentsfor42yearsandcontinuestodosotoday.Hereceivessupportformanyactivitiesthathavehelpedhimremainl ivingwithmyparentsforalotlongerthantheywouldhavebeenabletomanagethissituationotherwise.Asasocietywehavearesponsibil i tytocareandprovideforindividualswhoareunabletocareforthemselvesandhelpfamilieswiththatcare.Surelyasocietywehavetoprovideareasonableamountofcarefortheseindividuals.

12/6/20139:49AM

11 IgetSOMEpeaceofmind..becauseitfeell ikeitsanotherservicegoingtoberippedawayfromme,AND,notonlydoINOTunderstandhowitworks,MOSTpeopleIKNOWDON'TUUNDERSTAND..seemslikethereareanywaystointerpreterules&moneyallocation..VERYCONFUSING...

12/6/20139:23AM

12 ThisprogramoftenallowstheyouthIdealwithtorequestservicesthattheirfamiliescannotafford. 12/6/20139:16AM

13 Ireceivealloftheabovefrompatientsintheacutecaresettingtransitioningtohomeintheircommunity

12/6/20138:56AM

14 Re:c lients 12/6/20138:55AM

15 Mentalhealthservicescouldnotbeprovidedatareasonablecost. 12/6/20138:19AM

16 LTCProgramdoesassistthetaxpayersintitial lyuponincarcerationofoffenderscoveredascostsrelatedarenotpaidforbytheCounty.Butmoreimmportantisthattheseservicesservetoassisttheindividual(offenders)uponreleasebackintothecommunitythusassuringacontinuityofcare.

12/6/20137:55AM

17 Wouldbeonthestreetsandveryi l l withoutit. 12/5/201310:02PM

18 ItallowsfortheindividualsdignityandissetuptomeettheindividualsHumanandCivilRights.ItgivestheopportunitytomeetTheRighttoPursuitofHappiness.Itopensopportunitiesforemploymentandfortheindividualstobeanactive,productiveandcontributingmemberofsociety.Itallowsfortheindividualtoremainl ivingathomewiththepropersupportsandismorecosteffectivethanpreviouslyundignifiedinstitutions.Withinthattakingintoconsiderationthat,withoutthesupports,presentlyinplace,forindividualswithdevelopmentaldisabil i ties,familieswouldandwil lnotbeabletocontinuetosupporttheindividuals.Thiswouldrequireareopeningofinstitution.Takingintoconsiderationinflationandpresentcostofinstitutionalization,withoutthecurrentNHMedicaidLong-Term-Careprogram,inthewayinwhichitexistsforpeoplewithDevelopmentalDisabil itiesand/orotherDisabil ities,withoutexperiencedandtrainedcasemanagers,Medicaidwaiversfordayprogram,respite,residentialstaff,costofcarefortheindividualswil lbebyfargreater.Thisisnotfactoringinthestresslevelforfamilymemberswho,withoutthesenecessarysupportsfortheirfamilymember,wil lsufferstressrelatedi l lnessesandroundandrounditgoes.ThereisagreatdealmoretobesaidforthecurrentNHMedicaidLong-Term-CareProgram.Letusmoveforward,notbacktotheolddays,thatdidnotworkthen,itwil l workevenlessnow!

12/5/20138:55PM

19 Itisthedifferenceofmyfamilymemberl ivinga'normal'l i fe,whereheisabletowork,havesupportstosucceedandfeell ikeheisasuccess.Heisabletogetthemedicationthatheisstabil izedon,notthegeneric thatdidnotworkwellforhim!

12/5/20138:26PM

20 Havingchoiceisveryimportant.Ifmydaughtercanbekeptoutofaninstitutionandgetcare,allthebetter.Thiswayherdignityisrespectedandshewil lhavemoreopportunity

12/5/20136:23PM

21 N/A 12/5/20135:39PM

22 serviceprovidernotrec ipient 12/5/201311:55AM

23 Iamnotfamiliarwiththedetails. 12/5/20138:34AM

24 TheassistancefromOneSkyServicesCoordinatorhasbeengreat.Iwaslosttryingtohelptherecipientpriortohavingthem.

12/5/20135:16AM

25 TheonlythingIl ikeaboutNHMedicaidistheMEADprogram. 12/4/20137:37PM

26 notusingyet 12/4/20133:22PM

27 N/A 12/4/201312:49PM


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28 Mymother-in-lawandfather-in-lawprovide24/7carefortheirson.Mymother-in-lawdiedinApril2011andwerequestedlong-term-carebecausemy67-yofather-in-lawcannotphysicallyoremotionallyprovidethelevelofcarehissonneeds.We'vebeen"waiting",nowfor2.5years,withcontinuouspromisesof"inafewmonths".ThecheckmarksaboveindicatewhatIWOULDlikeaboutiti fwecouldaccessthelevelofcareandsupportneeded.

12/4/201312:20PM

29 Icangotowork 12/4/201311:27AM

30 Myson'sprogramisinadequateforhisneedsaswewouldl ikearesidentialplacementandhavenotreceivedit.

12/4/201311:01AM

31 Providesthisformypt.s 12/4/20139:44AM

32 N/A 12/4/20139:28AM

33 thankyousomuchfortheseservices.mydaughterwasinEasterSealsgrouphomefromage12.Eastersealsgrouphomewasnotidealandgreatlyneedsimprovementbutnowhereelseoption.farmsteadsofNewEnglandinHil lsboroNHisheradultplacementandananswertoMyprayers.ifIhadtodesignaplacemyselfIwouldn'tchangeonething.thankyouforsupportingherinthisamazingl ife.shefeedsbabygoatsandherteamhasgoneabove&beyondtoworkwithherintensebehavioralchallenges.pathwaysinClaremonthasbeenexcellentashasbeentheStarsevaluationswhichrecommendationsarealreadyhelping.

12/4/20139:21AM

34 withouttheservicesprovidedforandreimbursedforbyMedicaidIwouldbeunemployedandwithoutprivatehealthinsuranceformyselfandmyadultchild.

12/3/201310:21PM

35 WiththehelpandsupportoftheteamattheMooreCenterwewereabletodevelopaplanthatwouldbestbenefitMegan.Helpherwithdailyl iving,medicalandphysicalcareaswellasbeingagoodcitizeninhercommunity.

12/3/20134:18PM

36 Don'tuse,butseetheneedforit. 12/3/20133:18PM

37 IvaluethepersonalizedandcommunitybasedsupportourAreaAgencyoffers.Thehavealonghistoryofsupportingourchildthroughearyintervention,schoolageyearsandnowasanadltsohaveasolidsenseofherneeds,andourprioritiesforsupportasafamily.Ourareaagencyhasakeenunderstandingofthelocalresourcesavailabletousinourcommunity.

12/3/20132:34PM

38 Undermyguardianshipandwithyourhelpmysisterhasthefeelingofl ivingindependentlyforthefirsttimeinherl i feandsheisthriving.

12/3/201312:40PM

39 Itshouldassistthetrulyneedy.Thosewithfamilywhocanafforditshouldpaytheirownway.Itistheirresponsibil i ty.

12/3/201312:18PM

40 Thiskeepsupskil lsalreadyobtainedinSpecialEd.Veryimportanttothesefolks.MyboyswouldjustrotawayintheirroomslayingontheirbedswatchingTVwithouttheseveryimportantservices.Iespeciallyknowweneedtokeepourareaagencyintact:CommunityCrossroads.Greathelpwheneveryouneedit

12/3/201311:35AM

41 itcanbeveryfreighteningandlonelyandthesupportandkindnessisincreadablyhelpful 12/3/20138:44AM

42 Itallowsmylovedonetogettoandfromwork,havesocialinteractionanddailyl ivingskil lssupportandeducation.

12/3/20138:17AM

43 Beforemysonqualified,wewereonthebrinkoflosingourhomebecausehisservicestocareforhimwereastronomical.Medicaidlongtermcareallowsmetobeabletoworkandtakecareofhim.Before,Icouldnotdoboth.Wealmostlosteverything.

12/2/20137:56PM

44 AllthepeopleIservedependonMedicaidLong-Term-Caretosupportthemintheirdailyactivitiesandpersonalneeds.

12/2/20134:19PM

45 Ifitweren'tfortheassistanceweget,Iwouldnotbeabletoworkandwouldhavetostayathometocareformyson.Wewouldbothhavetobeonpublic assistanceandhealthinsuranceifIcouldnotwork.

12/2/20132:04PM

46 Thisisanextremelychallengingpositiontobeinasaparent.Itstressesthefamilytothemaxevenwithhelp.

11/29/20135:52PM

47 Seeananswergivenaboveaboutthe"l i feshare"home-providermodelshereceives. 11/29/201311:02AM

48 Providesmyfamilymembertheleastrestric tiveandmostnormalcyinqualityofl i fewithinhercapacity.

11/28/20133:05PM

49 Thisprogramisfac il i tatingmydaughter'squesttowardindependentl iving. 11/28/20132:27PM


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50 Il ikethelocal/direct/decision-makingcontrolwehavewiththefamily-governedAreaAgencySystem.Iappreciatethenon-profitAreaAgencies'mission-basedapproachtocareandmuchpreferitoverthefor-profitsystemoftheMCOs.

11/27/201310:42PM

51 Iknowmyson'scasemanager.Shel ivesinmycommunity.Sheisfamiliarwithourneeds.Wearenotjustanumberoravoiceonthephone.Iwantmyareaagencytoremainintactandabletomeethisneedsthroughthetransitionfromschooltocommunity-basedadultservices.

11/27/20138:55AM

52 Eachareaagencygetstoknowtheirc l ientsandthechallengestheyhaveindividuallysothatthemoneyisspentinthewaythatbestuti l izesthefundsbasedonneedandgeographyandavailabil i ty

11/26/20133:02PM

53 Ihaveasayinwhatandhowtheservicesaredelivered.Iamabletobeinvolvedwiththeoversightoftheorganizationsthatprovidetheservices.

11/26/201310:45AM

54 Itisimportanttoforthepersonwhoexperiencesdisabil itiestobeabletopartic iateinchoosingwhohelpsthemsotheycansucceedinthecommunity

11/26/201310:24AM

55 Idonothaveachoiceofproviders.Myareaagency,communitybridgestoldmewhomyproviderwouldbe.Therewereno"choices".Ihadtoresearchmyselftofindoutwhatotheroptionswereavailableformychildwithautism

11/26/20136:28AM

56 MysonwouldnotbeabletousetheservicesofLakesRegionCommunityServices-hewouldnothaveajoborthesupportforthatjob.

11/25/20137:41PM

57 Lookingtowardthefuture...difficultsituation 11/25/20133:24PM

58 Itisnoteasytounderstand,andallofafamiliesoptionsarefunneledthroughareaagencies,whooftendonotpresentALLoptions,presentincorrectinformation,andfamiliesaresti l l requiredtodoaLOToftheorganizingandthework.Inaddition,thecurrentsystemisunderfunded,andcompletelyoutofbalancewheresomepeoplehaveHUGEbudgetsandothershavepittance.

11/25/20131:37PM

59 Myhusband(mysister'sbrotherinlawandguardian)isabletoprovideformysister'sdailyneeds.WeareabletoaccommodateHolly'sdailyschedule,accordingtohowsheisfeelingfortheday(medicalandemotional.)Mysisterresidedwithourpaternalgrandparentsfor25years,residedintheirhomefor35yearsandasofthisyearwil lmovetoanewhome.Asofyet,thisadjustmentissuccessfulbecausewegoaccordingtoHolly'sneeds-fortheday.

11/25/20139:23AM

60 Thereisneveranypieceofmind.EverytwoyearsduringthebudgetprocessthereisthepotentialthattheNHlegislaturewil lnotallocatethenecessaryfundsandmydaughter'sbudgetmaybereduced.Theotherrealityisthattherearemanychildrenandadultsthatarecurrentlyunderserved.Everydayisastruggle.Ifmydaughterisplacedonawaitl istagainwhensheturns21shewouldnolongerbeabletol iveinherlocalcommunitywithherfamilyandsiblingsinaloving,familiar,andsupportiveenvironment-Iwil l havetohandherovertothestateofNH.Ihavetoworkandcannotquitmyjobtobehercaregiverfull-time.Ironicallyenoughifthathappensitwil l costthestateofNHfarmore.IbelieveturningLTSSovertoManagedCareOrganizationsistheWRONGthingtodo.NHalreadyranks2ndinthenation(2013CerebralPalsyInstituteStudy)inhighestqualityservicesandinthelowerthirdfordollarsspent.WhyonearthwouldwehandoveroursystemtoMCOsthathavel ittletoNOexperience?!ThisSIMgrantmoneyshouldhavebeenuti l izedtofurtherimproveourcurrentperson-centeredlocallycontrolledDDsystem.Wearemovingfromabottom-upsystemwheretheusersofthesystemhaveadirectsayabouthowandwhatservicesareuti l izedtoatop-downsystemwheretheMCOshavefinalsay…wheretheywil lcreatenewandmorecomplicatedprocessesforapprovals,appeals,etc.furtherburdeningfamiliesandindividualsbeyondtheveryuniqueandcomplicatedchallengeswefaceeveryday.IhavealreadybeeninformedofthisforStep1(acutemedical)…therewillbeanewtelephoneapprovalprocessforall3MCOstopartic ipateintheMedicaidmileagereimbursementprogram.UsingaManagedCaremodelandlenstodeliverLTSSisNOTappropriate.ThisistheworstthingtohappentoNH.Thisisbeingforceduponthestakeholders.Thiswil ldestroythepartnershipfamiliesandindividualshavewiththeBureauandputthesealreadyextremelyvulnerablecitizensatrisk.Thecommissioner,legislature,andGovernorstatethatMedicaidisunsustainable…thatthemanagedcaremodelwil lsavemoneywhilemaintainingqualityofcare(forStep2),buttodatewehavenotbeenprovidedwithanyobjectivedata,information,andevidencetoprovethatitwil l .Heckwedon'tevenhaveaplanyet.IfwewanttohaveaseriousnationaldiscussionaboutreducingMedicaidcoststhenweshouldbetalkingaboututi l izingthecurrentNHDDsystemintheUSandcarryingthatintotheelderbaby-boomerpopulation,butitwouldappearthatwiththewealthyspecialinterestofhealthinsurancecompaniesandnursinghomecompaniesthatprivatespecialinterestwinsoverwhatisactuallymoreappropriateforourc itizens.I'mverydisheartenedanddisappointedwiththeprocessandthekeypeoplewhohavebeenchargedwithsafeguardingthissystem.

11/25/20138:39AM

61 Mysondoesnotreceiveadequateservicesthroughthisprogram. 11/23/20139:58PM

62 CDS 11/23/20139:35PM


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63 W/oconsumerdirectedservicesmysonwouldnotbeabletol iveindependently,Hecurrentlyworksap/tjobs,takescommunitytransporationeverywhereandessentiallyhaveal ifeheenjoysandfeelsl ikepartofhiscommunity.Herequiresassistancewithjobcoaching(minimalhours),transporations,frequentsafetychecks,socialskil lsandMHservices.Iwouldmostl ikeyneedtoquitmyjobiftheservicewehavecurrentlyworksohardtocreatewerenolongeravailabletohim.

11/23/20137:49AM

64 Justwasapproved...Beenstrugglingwithoutit. 11/23/20136:26AM

65 AreaagencyandtheircontractorChescoarelocalandworkc loselywithourfamily. 11/23/201312:19AM

66 Idon'thaveenoughinformationaboutityet. 11/22/201310:19PM

67 ThecurrentNHsystemhasbeeninplacefor30years.TheAreaAgencieslocatedinNH'scounties,knowtheirareas,connections,resources,businesses,etc.Theyhavelongstandingworkingknowledgeofhowtohelptheindividualswithintheirparticulararea24/7.

11/22/20139:55PM

68 withouttheservicesprovidedmyguardianwouldhavetobeinalockedsetting 11/22/20136:27PM

69 Heisabletobeactiveinhishomecommunity,accessrecreation,supplementalservices,wemeetandworkwithateamregularly

11/22/20136:10PM

70 ManyofthefamiliesIworkwithsharewithmethatthesearethethingstheymostvalueaboutthecurrentsystem.

11/22/20135:50PM

71 Hehasthesupportheneedstostaysafe24hours/day. 11/22/20133:32PM

72 NotsureifIamintheLongTermCareProgram 11/22/20133:31PM

73 Iknowthepeoplewhoprovideservicestomysisterandcancallonthematanytime,nightorday,midweekorweekend,emergencyorunexpectedchangeofplans.Mysisteralsohasapersonalrelationshipwiththelocalareaagencyemployees.

11/22/20133:28PM

74 thereareanumberofconsumersthatarequitehappywithwhatthestate"gifts"them.Andhavenointentionofeventryingsomethingdifferent.

11/22/20131:53PM

75 IcancontactlocalandstatepersonnelifIhaveanissue. 11/22/20131:52PM

76 verycumbersome,overlyregulatedanddifficulttodealwith 11/22/20131:49PM

77 Choiceforthosereceivingservices 11/22/20131:45PM

78 Il ikethatfactthatwehaveaccesstosomefundingbutIdonotl ikethewaythesystemislaidout. 11/22/20131:40PM

79 shedoesn'tunderstandthequestion&wouldnotknowwhattoanswerevenifshedid 11/22/201312:28PM

80 withoutthebenefitmanypeoplewouldbewithoutservicesneededtomeetbasicdailyactivities,whetherathomeorinaplacement

11/22/201312:11PM

81 don'thaveityet 11/22/201312:00PM

82 Itisconsumerdrivenanddirected,andcommunitysupportedbyconsistent,personallyhiredandselectedsupportstaffandproviderswhovalueandfullyunderstandthebenefitstoALLinvolvedoflong-standing,trustedrelationshipswithlocal,community-involvedpeopleandorganizations.

11/22/201311:42AM

83 Itwouldbenicetohaveachoiceofproviderstoreceivementalhealthcarefrominsteadofoneproviderperregion.

11/22/201311:37AM

84 ThequestioniswhatIl ikeaboutit.WellIcan'tanswerthatbecausethepeoplethathandletheprogramsarenotreliable.sti l l needtohaveababysitterbecausetheydon'tfindsomeonetocoverwhenthatpersondonotgoinandtheyalwaystellyoulastmin.weworkandhavetotraveltogethomeandtheynevergiveenoughtimetobetherewhenthedisabledpersonisdroppedoffandcannotbehomealone.someofthelongtermprogramsheonlygetsonceaweekforacoupleofhours.DoyouthinkapersonwhohasMRisgoingtolearnl ifeskil lsinacoupleofhoursaweek.Theyneediteveryday.

11/22/201310:17AM

85 itisbetterthannothingbutinadequate 11/22/201310:16AM

86 Therearereallynootherchoicesto"l ike"itcouldbeimproved 11/22/201310:14AM

87 Althoughsupportdoespaymostoftheneeds,itdoesNOTpayforallandthefamilyhastomakeupthedifference.Whatwil lhappenwhenwedie?

11/22/201310:08AM

88 Abil itytocustomizenon-traditional,complementarytherapiesthatenhancetraditionaltherapies--muchmoreeffectiveoutcomes,progess.

11/22/20138:48AM


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Q10IsthereanythingelsethatyoulikeaboutthecurrentMedicaidLong-Term-

Careprogramthatyouwouldliketotellusabout?


# Responses Date

1 Ithinkitisimportantforindividualswithdisabil i tiestol iveasindependentaspossible.theMEADprogramgivespeopletheresourcestogooutandwork.itisimportantformeandi 'msureotherswithdisabil itiestohaveapurposeinl i feandworkingisawonderfuloptionforus.MEADallowsindividualstoactivelyparticapantinworkandcommunityenvironmentswithoutlosingessentialmedicalservicesthatMedicaidprovides.thankyoupleasekeepthisoptionforus!

12/10/201310:31AM

2 Itiscommunitybasedandaccessible.Thecurrentprogramisbasedaroundtheneedsoftheindividual.

12/9/20137:33PM

3 Ihaveappliedformedicareformyfamilymemberandwasdenied.Ihavetimeandagaintriedtogetassistanceformyfamilymemberwithnoresults.Idon'tknowwhatelsetodoasmyfamilymembercan'tfindajob.Ifeelyouragencyhasnothelpedinanyway.

12/9/201312:31PM

4 Don'tknowtheplanbutwoldhopeitbuildsoffVt.'sSASHprogramwhichisstructuredfirstaroundthestate'sSeniorHousingfac il i tiestogroupservices

12/9/20139:31AM

5 IamveryconcernedaboutthefutureofmyfamilymembersLongTermCareMedicaidbenefitsunderStep2oftheMedicaidManagedCareprogram.IhavenoideawhatStep2inc ludes.

12/7/20134:15PM

6 Itisvitalforconsumerstoreceiveneededservicesfortheirownwelfareandtoreducetheoverwhelmingburdenontheirfamilies

12/7/201311:49AM

7 Asaguardian,Iamabletoworkdirectlywiththeserviceproviderandareaagencywhentherearechangesintheneedsofmysister,whohasDownsSyndromeanddementia.

12/7/201310:34AM

8 Peoplegenerallydonotapplyunti ltheirl ivingsituationisonthecuspofbecomingunsafe.Ittakes90daysormoreforanapplicationtobecompleted.Oftentimesthisgapleavesthefamilyinl imbowaitingandnotknowingiftheywil lreceivetherequestedhelp.ThenumberofNursingFacil i tybedsarefrozenandtherearelongwaitl istssoindividualsinneedareatriskforaperiodoftimeandtherearenoservicestofi l l thisgapespeciallyifthec lientcannotaffordtopaywhichMedicaidLongTermCareapplicantscannotbecausetheyhavelowincomeandassets.

12/7/20134:37AM

9 Althoughsomeoftheservicesmydaughterreceivesarecalledaprogram,theydon'tneatlyfitintoaprescribed"program"thatmightonlybeavailablethroughourlocalareaagency.ThesearepeoplemydaughterandIknow,whoalsoknowandunderstandheruniqueneeds.

12/6/201310:51PM

10 Ithelpsmanydifferenttypesofpeopleandpopulationsinthisareainc ludingthepoorandtheelderly 12/6/201310:13PM

11 Itisvitalforpersonsl ivingwithmentali l lness 12/6/20139:40PM

12 Itkeepsmyyoungadultsonsafeandmedicallystable. 12/6/20135:30PM

13 Mysongetallheneeds.Iwishhoweverthathecouldgetsomepreventativedentalcare. 12/6/20133:18PM

14 ThereisaseverelackofstepdownMentalhealthservicesforpatientsdischargedfromtheStatehospitalinConcord.AsaresultPtshavetostaylongerintheStateHospital,unti lthecommunityoutpatientservicescanbegin.ResidentialprogramsareBADLYNEEDED.Ifnothingelsetosavetaxpayerdollars.ThesepatientswouldnotneedtostayattheStateHospitaliftherewereresidential(cheaper)SERVICES.

12/6/20131:40PM

15 Waitngtimeforassessmentistoolong! 12/6/20131:03PM

16 accessingcrisisisservicesinc ludingtelephonecrisisl inehasl lterallysavedmydaughter'sl i femanytimes-fromattemptedsuic iedethreetimes,plusothercrisesthatwouldhaveledtomoreseriouseventsifnotfortheearlierintervention.

12/6/201312:11PM

17 Iworryformyson'sfuture.MyhusbandandIwil l notl iveforeverandIwanttogoknowingthatheistakencareof.

12/6/201311:16AM

18 ServiceLinkhasbeenapositivepartofthesystemtohelpconnectolderadultstoavailableservices. 12/6/201311:13AM


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19 Theflexibil i tyofchoicesandbeingabletoruntheprogramservicesinbehalfofmyadultchildren. 12/6/201311:09AM

20 VITALINNH 12/6/201311:00AM

21 Itprovidesmechoiceofproviders.Mydaughterneeds24hoursupportfromdevelopmentalservicesaswellassupportforhermentalhealthissues.Medicaidsupportsherlongtermcareneedsinbothsystems.

12/6/201310:50AM

22 WearehopingthatourchildcangetsomekindLongTermCarewithamentalhealthproblemdisabil itythatisnotSchizophreniaorBipolarDisease.Sheisverymuchaffectedbysomebraindisorderthatkeepsherfrombeingabletogetoutintotheworkplace.

12/6/201310:36AM

23 DDservicesdohavesomeproblems 12/6/20139:27AM

24 IamconcernedaboutaddedadministrativecostsrelatedtoManagedMedicaidandhowthosefundswillgotooutofStateProfitsandadministrativeoverhead.Iamalsoconcernedaboutaddedadministrativeburdensonproviders.Iamespeciallyworriedaboutplanstoinc ludepeoplewithdevelopmentaldisabil i tiesinthissystem.

12/6/20139:27AM

25 ItreallyhelpsandDOESprovidesomepeaceofmind.... 12/6/20139:23AM

26 Ibelievethereisaneedforthisprogramfortheyouthwhodonothaveaccesstotheirownfinancialstabil i tysotheycanreceivetheseservices.Byreceivingtheseserviceshopefullyinmost/somecasestheywil lgaintheopportunitytoimprovetheirpersonalsituationsinordertobecomeactivemembersofsociety.Mentalhealthisaverynecessaryfactorinnormaldevelopmentandsuccessinl i fe.Thepeoplewithlongtermdisabil ityalsoneedtheseservicesinordertofunctiontothebestoftheirabil i ty.

12/6/20139:20AM

27 Itpreventsabjectpovertyandhumansuffering.Pleaseconsiderfundingitadequately. 12/6/20139:00AM

28 Itiscrucialtothesupportofourlovedonewhopresentswithmentalhealthissuesandotherhealthissues

12/6/20139:00AM

29 ItprovidesextraservicesfrompersonalcareattendentsthatVNAcannotprovideandenablespeopletomeettheirneedsinthecommunity.Therearewaitsinsomeareasduetotheruralsettingandl imitedcreproviders

12/6/20138:57AM

30 Adultmentalhealthservicesforthenotseriouslyandpersistentlymentallyi l l donotprovideforenoughsessions.Frequentlytheydon'treceivetheservicestheyneedanddeservebecauseofthespenddownandthe$1,800l imit.

12/6/20138:57AM

31 Itwouldniceifthiskicksintohelpfamiliesofthedisabledbetweentheagesof18and21.Itisa"deadzone"andfamiliesareinhorribleshapetocareforchildrenthatareinthatagegroup.

12/6/20138:28AM

32 thinkithasalwaysbeenresponsiveinapositivewaytohelpmeetmybrother'sneeds 12/6/20138:09AM

33 Ithelpsindividualswhoneedmentalhealthservicesobtaincounsell ing,respiteandnursinghomecarethattheyotherwisewouldbeunabletoobtain.

12/6/20138:01AM

34 AnyservicesandassistancethatimpactsdirectcostreductionstotheCountyCorrectionssystemsuchasLTCisimportanttothetaxpayersofourCounty.

12/6/20137:57AM

35 Ourfamilyhashadtogothroughmanyobstaclestogetoursonwhatheneedsandbeingabletomaintainthathasbeenalmostimpossible.Ourfamilyalongwithmanyothersneedhelpwithrespiteservicesanditseemsasthoughwhenwegetonethesystemcracksagain.Ialsodonotbelievethatthesechildrenshouldhavetoendupinthejuvenilesystemtogetthehelptheyneed.Alsolet'sworktosavethegrouphomeswehaveorworkwiththemtogetnew

12/6/20137:57AM

36 Ishouldmentionmyanswersareretrospective.Myson,whileinthecareofNHMentalHealthSystem,waskil ledbyadelusionalfellowsuffererofschizophrenia.Inamajorwaynoonewasguiltyofacrime.Infactthatiswhatthecourtdecided"Noguiltybyreasonofinsanity."Ithasbeenmanyyears.TheintensityofmybeliefinthenecessityforaneffectiveMentalHealthSystemisunwavering.

12/6/20137:30AM

37 withadiagnosisofbipolarmooddisorderandSchizophreniahewouldnotsurviveonhisown.Hewouldbel ivingonthestreetswithnomedications.

12/5/201311:10PM

38 ACTteamservicesprovidedthroughMedicaidarecriticaltomylovedone'sabil i tytol iveinthecommunity.

12/5/201310:59PM

39 WithoutMedicaidIwouldbeunabletopayformymedicalorpsychiatric care.Iwouldnotbeabletopayformymedic ineandwouldbeunabletol iveindependently.

12/5/201310:36PM

40 Trust 12/5/201310:12PM

41 Medicalcareisimportant 12/5/201310:08PM


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42 Providescasemanagementservicesthathavebeencriticalatsomepointsinmyfamilymember'shistory.

12/5/20139:44PM

43 IhaveaspenddownthatisunrealisticalyhighandIoftendon'tseekmedicalcarewhenneededbecauseofthis.

12/5/20139:26PM

44 Ijustoutlaidthisunder#9.Yes,anythinglessthanthatwhichthisprogramsupportswil lbeaviolationofbasicHumanandCivilRights.Anythinglesspreventstheseindividualswhoareinneedofthesesupportsandservicesfromtheirpursuitofhappiness.Additionally,dothemathatthelevelofcostofinstitutionsthesedaysandyouwil lfindthatthecurrentMedicaidLong-Term-CareProgram,asitissetup,atpresent,forpeoplewithD.D.,braininjuriesandsuchremainsmostcosteffective,byfar.Takeawaythisprogramandyouaffectnotonlythispopulation,buttheirfamilymembers,caregivers,peoplewhoknowwhattheyaredoing,who'vebeendoingitforyears.You'l l beaffectingeffic iency,costeffectiveness,jobs(manywil lbelost),theeconomyasawholewil lbeaffected,ConstitutionalRightswil lbeunderviolationandthisstate,thiscountrywil lhavejointintothirdworldcountrymovements.ThiscountryhasbeenestablishedunderGod,withLibertyandJusticeforALL!

12/5/20139:09PM

45 Pleaseincreaseyourattentiontothementalhealthissuesinourstate. 12/5/20138:49PM

46 Familymemberhasalotofmedicalissuesthatwewouldnotbeabletocoverthecost.Ifnotformedicaidfamilymemberwouldendupinafac il i tyneeding24/7nursingcare.Iestimatedthatitwouldcostthestatehalfamil l iondollarsayear.Itismorecosteffectiveforourfamilymembertostayhomewithusbuttheloveandcareweprovideissomuchbetterthananyfac il i tycouldevergive.Forthiswearethankful.

12/5/20138:45PM

47 Ithinkexpansionisimportant!Perhapsthatwon'tinc ludehousingorfoodstamps,butintegratedhealthcareisvitalforourfamilies,thecommunityandthestate.

12/5/20138:27PM

48 Igetsupportfromothers,whichhelpmeasmysisterscaregiverandguardian. 12/5/20138:13PM

49 Thatabasicmodelexistsatallisappreciated.Yetatremendousamountofimprovementneedstotakeplace.

12/5/20138:10PM

50 Havenotusedtheservicesyet.Sti l l waitingforapproval.Verylongwait. 12/5/20137:53PM

51 MorehospitalsthatcantakelongtermmentalhealthpatientstoavoidthelongstaysintheER 12/5/20137:34PM

52 IwouldneedtoknowmoreinformationabouttheMedicaidLong-Term-CareprogrambeforeIanswerthisquestion.

12/5/20137:31PM

53 Regularsupportiveservicesarelessexpensivethancrisisdrivencareandismorehumanefortheindividual

12/5/20136:27PM

54 Medic ine,housing,jobtrainingandonjobassistanceareveryimportant. 12/5/20136:20PM

55 Itwil l becomethevehic leforintroductionofmedicalhomesinNH.Itisessentialthatpeoplewithmentalhealthissueshavecoordinatedcare.Fortoolong,thePCPhasbeenleftoutofthecommunicationloop.

12/5/20136:14PM

56 Itprovidesflexibil i tysooursoncanhavetheservicesheneedsnowandIhope,whenwearen'tabletocareforhim,hewil lbeabletogetmoreservicesasneeded.

12/5/20136:10PM

57 Theyarecommunitymembers.Iknowthem.Wefunctionwellasateam. 12/5/20136:02PM

58 ProjectSEARCHisanexcellentprogramforyoungadultswithdevelopmentaldisabil i tiesandmentalhealthchallenges.

12/5/20135:50PM

59 ThatIdirecttheservicesthatbestsuitmyson. 12/5/20135:14PM

60 Wearethankfulforallthehelpandsupportthatwereceive... 12/5/20132:48PM

61 Il ikethefactthatMedicaidsupportsprogramsthatgivepeoplewithdisabil i tiestheopportunitytobeincludedintheircommunitiesandinthesocietyatlarge.

12/5/20131:09PM

62 Peoplewithdisabil i tiesshouldreceivemoremoneyintheirallowancerat$600.00aweekYoucannotliveunder$600.00justtogetbytodayespeciallythehighcostoffoodandothergoodsandservices.ThereshouldbechangesintheConsumerswithdisabil i tieswholivesinthecommunity.Consumerwithdisabil i tiesdeservestol iveabetterl i feintheCommunity.JocelynGallant,Salem,NH

12/5/20131:01PM

63 Thecasemanagerwasinvaluableinunderstandingandhelpingmyfamilymembertoaccessservicesandhelpusfindstaffthatfitwithourfamily.Ourfamilydealsdirectlywithonepersonforeverythingandkeepsuswellinformed.

12/5/201312:39PM

64 Thatitprovidesqualityofl i feandcommunityinc lusionforpeoplewithacquiredbraininjury. 12/5/201311:57AM

65 nope 12/5/201311:55AM


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66 Morehousingoptionsneedtobemadeavailableandfunded.Betterpayandtrainingforhelpneedstobeinplace.

12/5/201311:12AM

67 Thechoiceswegettomaketopersonalizemydaughterscareandsupport. 12/5/201310:58AM

68 Localcontrol. 12/5/201310:16AM

69 ItisextremelyimportantthatIhavetheabil i tytohirethesupportstaffformychild.Theyareanintegralpartofhercareaswellasourfamily.Inaddition,whenanissuearises,Ineedtheabil i tytospeakwithsomeonelocaltohelpweresolvetheissue.

12/5/20139:14AM

70 Weeventuallywil lneedtouseitandwouldl ikedetails. 12/5/20138:35AM

71 Itishelpingtherecipientmaximizeherpotentialthatiotherwisewouldnotbeabletodo. 12/5/20135:17AM

72 Il ikethefactthatitishandledlocally.Idon'twantanythirdpartyinsurancecompanythatislocatedoutofstatehandlingthisformyfamilymember.Itiscrucialthatitremainlocallycontrolled.Noout-of-statecompanyneedstotakethisover.

12/4/201310:10PM

73 Itprovidestheservicesneededtonotonlykeepmydaughterinourhomeandcommunitybutalsokeepsherhealthyandabletomaintainacquiredskil lsthroughon-goingtherapiesasneeded.

12/4/20139:39PM

74 Mysonneedseyeglasses,becauseofhisautismsometimeshisbehaviorisoffcolorandhebreakshisglasses.Thisisveryexpensesbehaviorforthefamily.Hismedicationtoadjusthisattitudeisverycostlyanditisverynicethatthesethingsarecoveredsothathecanbeinvolvedwithsocietyandhandleoverwhelmingsituationsbetter.

12/4/20139:08PM

75 no 12/4/20139:06PM

76 MydaughterMonicahasAicardiSyndrome,raredisorderthatleavesherphysically,mentallyandvisuallychallenged.Sheisfedwithafeedingtube,hasseizureseverydayandistotallynonverbalandincontinent.TotalCare.Whenshewas22shemovedintoagrouphomestaffedbymedicallytrainedcaringpeoplewhocareforherasmuchaswedo.Ithasbeenablessingtohaveherinahomethathas24-7careanditisherhomeasweusehersocialsecuritychecktopayforherrentthere.Medicaidpaysfortherest.Ithasbeenal ifesaverforMonicaassheisveryhappytherewithhertworoommatesandthestaffitisaverybusyhousethathaslotsofactivityunlikeherl i feathomewhichwasquietasherparentsworkedalldayandherbrotherwasatschool

12/4/20139:06PM

77 Iwanttobeassuredofmyhealthneedsbeingassuredinmyoldage,notbeingrequiredtoauctioneverythingIhavetofundit.Ihavecontributedenoughtotheeconomyofthiscountryforit,inturn,tocareforme.

12/4/20139:05PM

78 MyspendownistoohighforMedicaidtobehelpfulatthistime(IamnotcurrentlyworkingsoamnoteligibleforMEAD).IsupposeitwouldbehelpfulifIbecameveryi l l ,andforERandhospitalcoverage(Ihavenotbeeninthehospitalforover7yearsandhaven'tgonetotheERforseveralyears).

12/4/20137:41PM

79 WeareveryappreciativeoftheserviceswereceivethroughKatieBeckett/HKG/Medicaidprogram.Thankyousomuch!

12/4/20136:27PM

80 ItgivesmethesupportIneedformy36yrolddevelopmentallydisabledson. 12/4/20133:03PM

81 TheABDWaverProgramunderMedicaidandmanagedbytheDeptofDevelopmentalDisabil ityServiceswhocontractwiththelocalAreaAgency(s)isaqualityprogramwithcasemanagementandaccountabil i tyfordeliveringappropriateLTCservices

12/4/20132:37PM

82 noco-pays 12/4/20132:05PM

83 TheWaiverProgramsallowindividualsthatcannotbeproperlycaredforinatraditionalnursinghometofindanon-Medicaidproviderthatcanmeettheirmedical,socialandindividualizedcareneeds.

12/4/20131:59PM

84 OurdaughterhasaSelf-Directed-ServicesProgramfundedbyMedicaidthatallowsustodesignherprogramandchoosehersupportprofessionalsasherneedsdictatewithinherfundingallotment.Asherdevelopmentaldisabil i tyiscomplexandsevere,itiscriticalthatthemodelissensitivetoherindividualmedicalanddevelopmentalprofi le.TheSDSprogramgiveshertheopportunitytostrivetowardherpotential,whileimprovingfunctional/dailyl ivingskil ls,increasingcognitivegrowth,contributingtothecommunitythroughvolunteerwork,andaddressingspecific medicalandpersonalneeds.Itallowshertoremainathome(herleastrestric tiveenvironment)withapositivequalityofl i feamongfamilymembersandfriends.Aswe(herparentsandguardians)age,theSDSProgramwil lallowhertocontinuel ivingathome.ThesupportservicesofferedthroughourLakesRegionCommunityServicesteamallowsforasmoothandeffic ientoperation/coordinationofherindividualizedprogram.Inshort,itworks!

12/4/20131:16PM

85 theServiceLinkagencyisveryhelpful 12/4/201311:49AM


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86 Maintaintheconsumer-directedoptionsforcommunity-basedcare 12/4/201311:48AM

87 MedicaidClientserviceshasbeenhelpfultoassistinfindingprovidersofMedicaidservices.ServiceLinkcanalsobehelpfulwithprovidingresourcesforMedicaidrec ipients.

12/4/201311:42AM

88 Needhelpbeforechildreaches21.Maybeatage12startwithplanthatcandevelopperson'sabil i tytobesomewhatselfsuffic ient,developjobskil lsthatnotesperson'sabil i ties,developdailyl ivingskil lsetc.

12/4/201311:31AM

89 wishedithelpwithdental 12/4/201311:27AM

90 Weonlyhavetodealwithoneentityasopposedtomultipleentities. 12/4/201311:02AM

91 Anypendingchangesiscauseforextremestressforboththec lientandfamily.Notknowingwhatserviceswil lbecoveredgoingforwardmakesitdifficulttoplanahead.

12/4/201310:29AM

92 HavingthesystemrunbylocalareaagenciesandhavingfamilymembersservingonthegoverningBoardsofDirectors

12/4/201310:22AM

93 ThereshouldbebetterhousingoptionsinNH.Peopleshouldbeallowedtol iveingroupsettings(notinstitutions)toshareprovidersandhave"friends"tol ivewith.

12/4/20139:49AM

94 Itisverypoorlymanaged.Patientsandfamilieswaitinordinateamountsoftimeforapprovalfromthestateforplacementand/orserviceswhichwouldpreventhavingtomovetoalocalfac il i ty

12/4/20139:47AM

95 Whyarepeopletryingtofixsomethingthatisnotbroken?Wearebombardedwithpseudo-information,butneverarewetoldWHYthe2ndratedsysteminthecountrywhichisinthelowerhalfofcost/capitaisbeing"fixed".Wedon'treallywanttoprovideinformation,wewanttoknowWHY.Why?

12/4/20139:35AM

96 Il ikethefactthatitisavailableforourdaughter.TheRespiteisespeciallyappreciatedbyus. 12/4/20139:33AM

97 N/A 12/4/20139:28AM

98 allIcansayisthankGodweliveinAmericawhereourc itizenswhocannotcareforthemselvesaregivenwhattheyneed.thankyouforyourlongtermcareprogramwithoutwhichIwouldbeunabletomeetherneedsandherqualityofl i fewouldplummet.j i l l ianLee39Baypointrdnewburynh03255603-763-0385ji l lc [email protected]

12/4/20139:27AM

99 Mysister(Iamherguardian,aswell.)receivesexcellentcarebecauseoftheseservices.ShehasrecentlybeendiagnosedwithAlzheimer'sandwil lrequiremorecareinthefuture.Thankyou.EdAllard.

12/4/20138:40AM

100 Longtermcarefunding.Customizeprogramthatfitsindividualneedsnotoneprogramthatfitsall.Usefundsprudentlybutshouldlookatspendingneedsnowthatwouldsavefundsinthelongterm.Forexample,payingforpreventativedentalcareandnotwaitti l l emergencydentalworkisrequired.

12/4/20138:38AM

101 Moreshouldbedonefortheat-homelongtermcareandconsiderationfocussedfrominstitutionalcaretosupportforathomecarewithmoredollarsavailableforthispurpose.

12/4/20138:13AM

102 IlovethatIcangotomylocalareaagencyforanyobstaclesImayencounterandtheyassistinfindingasolutionandthatfamiliesarehelpingfamilies,eventhoughtitmaynotcostanything,thereistheconnectiontoothersgoingthroughsimilarobstaclesandwecanlearnfromeachotherandhavelocalcontrol

12/4/20137:08AM

103 EasterSealsofNHisresponsive,caringandtakesapersonalinterestinmyson'slongtermcarewhileconstantlyworkingwithhimtoadvancehiownabil itiesandcapabil ities.

12/4/20132:07AM

104 ItwouldcosttheStateofNHsignificantlymorethanthestipendIreceivetoprovideservicestomysibling.

12/3/201311:10PM

105 IamkeptinformedbyAreaAgencyaboutservicesandoptionsformyDDadultchild.Itisc lientbasedandservesthec lientswithWHATtheyneed...NOTdirectedbyapanelofnon-medicalMBApeoplewhofocussolelyonnumbers,checksandbalances.Therightsofthepersonwiththedisabil ityarehonoredandrespectedwiththe"hands-on"supportpeople.Witharemotepanelofstrangersmakingfinancially-baseddecisionsforthispopulationitwouldturnbackthehandsoftime,backtothe80'swhenHMO'sfirstappearedonthescene.Manypeopleneedlesslysuffered,endureduntowardoutcomes...andmanydiedwaitingforafinancialdecisionandthisisunacceptable.Managingone'shealthcareeffic ientlywil lautomaticallymanagetheassociatedcosts....butthedecisionmakingmustbeethicallydoneandappropriateforthec lient.....

12/3/201310:33PM

106 Myc lientisabletohaveafamilyl ikeatmosphere,whereasanon-verbalc lientheisunderstoodduetotheconsistencywithstaffing,theindividualizedtreatment.

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107 Iwouldl iketoexplorecreatingasmallcommunityofpeoplethatmyadultsonalreadyknows-andwhosefamilieshealreadyknows-fromthelast10yearsofhisl i fe.Thefamiliesareallcommittedandinvolvedwiththeirperson...andthisistheonlyscenarioIcanthinkofthatwouldbeinmyson'sbestinterest.

12/3/20138:20PM

108 No 12/3/20138:11PM

109 Needsmuchmorepublic ity.Whatarethequalificationsforgettingintotheprogram?CurrentlyMedicaidc lientsgetfullhealthcareinc ludingnursinghomecare.Isnotthisconsiderdlongtermcare?Personalknowledge:Inanursinghome,roommatepayingprivatepayatc loseto$330adaywhileotheronMedicaid,whichpybetween100and200aday.Absulutenodifferenceincare...rightlyso.

12/3/20135:24PM

110 Keepthecommunitybasedareaagencies 12/3/20134:49PM

111 Thefactthatitistailoredtomeetmyson'sspecific needswhichchangeliterallyonadailybasisandthatitisconsumer/familydirected,notacookiecutterapproach.

12/3/20134:39PM

112 thewaitingperiodandthetransitiontoserviceswasconfusingandfrustratingattimes.Butnowthatherplanisinplaceitworksreallywell.ThereisagoodsystemofchecksandbalancesandgoodcommunicationbetweentheMooreCenter,Megan'sproviderandmyself.

12/3/20134:19PM

113 Il ikethefactthateverythingisdonelocally.Everyoneknowseverybodyelse.Knowledgeofthelocalcommunities,businesspartners,employmentandsocialactivitiesseemstomakeitwork.Therelationshipswhichdevelopincreasetheunderstandingofmysonsneeds,andagenuineinterestinmeetingthem.

12/3/20133:52PM

114 TheGatewaysprogramhasalwaysbeentheretomeetanyneedorprovideinformationaboutthebestwaytomeettheneed.

12/3/20133:27PM

115 Takescareofthoseinneed. 12/3/20133:19PM

116 Il ikethepersonalizedandlocalsupportofferedbyourAreaAgency.Theyhavelongevityinprovidingsupporttoourseverelydisabledchildfromearlyintervention,throughschoolage,andintoadultservices.Theyknowherneedswell,theyknoworfamilyandourprioritiesforourchild'scareandtheyhaveasolidunderstandingoflocalresourcesandsupportsthatcanhelpprovidecareforourchildinhercommunity.

12/3/20133:07PM

117 Werecentlywentthroughtheprocessoftransitioningfromschoolagesupportstoadultserviceswhenmychildturned21.Attimesitwasveyfrustratingbecausedespitebestefforts,theprocesswasnotseamless.Thesupportstaffwhowouldsupportmyyoungadultoncesheturned21,werenotabletooverlapwithsupportstafffromourchild'sschoolageprogramtobenefitfromtheirexpertiseandtrainingbecauseoflackoffunding.Therearefederalmandatesinplacetoprovidefortransitionservicesbeforeachildturns21,butreallynoaccountabil i tytothesetransitiongoalsoncethechildturns21.

12/3/20132:41PM

118 Il ikethatmyson'sservicesareoverseenbyanAreaAgency.Il ikethelocalcontrolandhavingsomeone(whounderstandsmyson'scomplexneeds)availabletosupporthimandourfamily.It'sworkingwellunderthecurrentLongTermCareProgram.

12/3/20131:48PM

119 Community-basedandindividualized 12/3/201312:36PM

120 Improvedaccesstoneededservicesisessential.Moreandfrequentoptionsforinhomecaremustbedevelopedatthesoonestpossible.Longevitycoupledwithdebil itationisdefinitelynotaprivi legeformostpeople.

12/3/201311:37AM

121 Hastobekeptinplaceforthesepeople.Thesearehumanbeings,notanimals.WecannotletourMentallyChallengedfolksdown.Theseservicesneedtobekeptinplaceasanhumanrightsissue.Mysonslovegoingtoschoolandtohisprogrameveryday.Onesonisnowcomingofageandwil lneedservices.ThisisthesecondonewehaveunderLegalGuardianship.Waitl istneedstobefullyfunded

12/3/201311:37AM

122 Mychildrens'medicationsareverycostlyandmedicaidpayswhatmyprivateinsurancedoesnot.WithoutitIwouldnotbeabletoaffordtheirmonthlyprescriptions.

12/3/201310:56AM

123 Mydayprogram.Andhavingahome. 12/3/201310:35AM

124 Nonotatthispoint... 12/3/20139:22AM

125 JobdevelopementforapersonwithMR 12/3/20138:48AM

126 Idon'tknowwhatIwouldhavedoneiftherewasn'thelpoutthere 12/3/20138:45AM


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127 Il ikethatmylovedonecancontinuetoworkandrecievesupports.ThishelpsmyfamilyoutasthecaregiveroftheMedicaidrec ipientages.Worryaboutwhathappenswhenolderparentcan'ttakecareofloveoneorneedsmorehelp.Whathappensthenifi tisnotintheirplan?

12/3/20138:19AM

128 Wefinallyhavecontinuityinservicesbetweenallhisproviders.Ittookhimgettinglongtermcareforthattohappen.BeforeIhadtocalleverydoctortorelayinformation,nowhiscaseworkerco-ordinatesthat.

12/2/20137:57PM

129 Toomuchstaffturnover 12/2/20136:19PM

130 Withoutthesupport,theseindividualswouldbelostandaccomplishingl ittleornothing.Theydependonthesupportfortheirsurvival.

12/2/20134:20PM

131 Ithelpsmyfamilymembersothatheisabletol iveagoodlifeandaccomplishthingsthathewouldnotbeabletodowithoutit.Hewouldbethehomelessbumonthestreetswithoutthesupporthereceives.

12/2/20134:05PM

132 Providersthatknowmysonandtakeapersonalinterestinhiswellbeing.Anagencythathasaproventrackrecordofsuccessfulcasemanagement,homecareproviders,andcommunityintegratorswithateamapproachthatinc ludesmysonaswellasme.

12/2/20133:15PM

133 Theprocessforapplyingissimple,theprocessofacceptancetakesalongtime.Iftherecouldbesomethingdonetospeedtheprocessupforserviceswouldbegreat.Currentlyweattendanappointmentrequestingservicesandtheactualserviecsdon'tstartunti l2+monthsdowntheroad.

12/2/20132:18PM

134 Localcontrol;priorityofc lientchoice;focusonqualityofl i fe,dignityandopportunityfortheindividual

12/2/20131:58PM

135 Serviceswhenavailablearenotl imited 12/2/20131:53PM

136 Veryresponsive-l iketheyarepartofmyfamily 12/2/20131:53PM

137 Needstobelocallycontolledwithminimumofoverhead:That'sthewayitworksnow 12/2/201312:40PM

138 Easeofuseofproviders&specializedsupport 12/2/201312:06PM

139 InowhereandwhoIneedtospeakwithifthereisaissue,Ihavesomechoicesastowhereoursonlivesandhopefullywhereheisnowiswherehewil lcontinuetobefortherestofhisl i fe.

12/2/201311:55AM

140 ItisverydifficulttounderstandManypeoplewil lnotpartic ipateduetothepropertyl ienprocess 12/2/201310:31AM

141 LocalAreaAgency-knowingIhavesomeoneIcancalltoaskquestionsandassistmeifneeded. 12/2/20138:58AM

142 Itssupportshavegivenmyselfandsonal ifethatIdon'tknowwhatwewoulddowithoutit. 12/1/201310:09PM

143 itisadministeredbylocalgatewayswhichknowstheneedsandisveryavailable 11/30/20131:09PM

144 IthinkwiththecurrentbudgettheAreaAgenciesmanagethingsfairlyandshouldbecommendedforbalancingcostsandservices.Managedcarewil lnotbeabletoduplicatethisforlessunlesstheycutcosts.Thequalityofcarewil lsufferiftheyareallowedtodothis.Happytotalkwithanyofyouanytime.Thanks,Bil l Doherty,58DavisRd.Merrimack,NH.424-1944or440-3993

11/29/20136:05PM

145 Weneedtobepeoplenotnumbers.Youneedtohaverepresentativesthatworkc loselywithyouandknowwhoyouare.Theyneedtobeabletoseewhatissuesyouhaveandwheretheycanhelp.Beinganumberinanysystemwil lNEVERwork.Asparentsgrowold,ourlovedoesn'tchange,butourenergygetslow.Thehardestpartofraisingachildwithchallengesisthatwedon'tl iveforever.

11/29/20135:55PM

146 Thepersonreceivingtheservicesgetstoreceivetheirservicesintheircommunityfromsomeoneinorneartheircommunity.WheneveracrisisarisesIknowthatIcancallsomeoneatmyAreaAgencyandtheycanhelpbecausetheyknowmychildandwhattheissuesare.Thereisnoneedtoreadafi leandnoflowcharttofollowbecausethecasemanagerknowsthechild.

11/29/20134:01PM

147 Itismostimportantthatmysoncanstayathomeandthatwehavechoices,althoughchoicesarefew. 11/29/20131:21PM


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148 Itisnecessarythatanyprogramproviding"l ifebuilding",or"l i fesupporting"servicesthatarenotmedical,butareprogrammingthedailyl ivingsupportsforindividualswithdevelopmentalormentaldisabil i tiesbeprovided1)locally,and2)byanon-profitagency.Regarding#1,mylocalAreaAgencyknowsmydaughterpersonally;shecanvisitthem(accessibil i ty)anytimesheneedstohavequestionsanswered,assistance,throughhercarecoordinator.Hercarecoordinatorisfamiliarwithcommunityresourcesbecauseshel ivesinthecommunitywheresheworksfortheareaagency.And,byextension,theareaagencyknowsthecommunity.Itisnotlocatedinanotherpartofthecountry.Eveninaruralstatel ikeNH,therearesti l l issuesoftheagenciesneedingtobec losertotheirc l ients;butatleasttheyarewithinanhour'sdriveformostc lients.#2--NON-PROFITisessentialbecauseanyprivatemanagedcarewil ldefinitelyreducethequantityandqualityofcareforc lientsinordertomakeaprofit--offthem.Thecurrentsystematleastisnottakingawaymoneythatcouldbespentonc lients.NHisoneofthemostfinanciallyeffic ientDDsystemsinthecountry.

11/29/201311:11AM

149 MychildreceivestheIHSwaiver;Il ikethatIcandevelophisserviceagreement,supportsandbudgetbasedonhisneeds.

11/29/20138:29AM

150 Il ikethatmylocalareaagency"GatewaysCommunityServices,Inc."haspartneredwithmeandmyfamilymemberfor25+years.Theyknowthel ifestylemyfamilymemberisaccustomedtoandIamconfidentinthequalityofservicesthatwouldcontinuetobeprovidedthruthemwhenIamunabletodoso.

11/28/20133:13PM

151 Il iketheSelf-DirecetedServicesoption 11/28/20132:28PM

152 Il ikehowtheState(BDS),theAreaagenciesandtheindividual/familiesworkincollaborationtohelppeoplefollowtheirblissandl ivegoodlives.Il ikethatthecurrentsystemwehavedoesNOTemployservicesthroughamedicalmodel,butinsteadseekstohelppeopleidentifytheirhopesanddreamsthenconnecttothemasc loselyaspossible.

11/27/201310:46PM

153 Theareaagenciesareuniquelyqualifiedtodealwiththearayofdisabil i tiesandtodeliversupports.Ihavegreatconcernthattheprogramswil lbemovedintosomesortof"managedcare"processwhichwilldonothingmorethanskimmoneyoffthetop,leavinglessforc lientsupport.

11/27/20135:56PM

154 No. 11/27/201311:42AM

155 Onlinerenewal.ApplicationassistancefromServicelink.Nothavingtoworryaboutshelter&foodformyfamilymember.

11/27/201311:22AM

156 Thedevelopmentaldisabil i tysysteminNHis#2inthecountryaccordingtoUCP.Ithasadegreeofbuilt-inlocalcontrolandconsumerinput(inadditiontoconsumerdirectedservicesontheindividuallevel)thatisunusualandimportanttoitssuccess.

11/27/201311:13AM

157 Thiswholeprogramhasbeenal ifesavorforme(myhusbandistheonewhogetstheservices)WithoutthisprogramIfeelhewouldbeinanursinghomeorifheisathomehewouldn'tbegettingthecarethatheneedswithoutyoufolks.THANKYOU!!!!!

11/27/20138:44AM

158 Theyaredoingagoodjobandkeepupthegoodwork. 11/27/20138:33AM

159 Notalotofoptions 11/26/201310:16PM

160 itworks,itallowsmysonstol iveintheleastrestric tiveoptionspossibleandpartic ipateincommunitylife.

11/26/20134:00PM

161 FamilySupportsystem..... 11/26/20133:02PM

162 Thelongtermcareprogramwasdevelopedbypeoplewhoareinourcommunities,knowourfamilymembersandwhatisbestforthem,hasadvisorycouncilsofindividualswhoknowhowtodevelopandoverseetheneedsofourfamilymembersandthereforecandoitinacosteffectiveway.

11/26/201311:21AM

163 It'sanotforprofitsystemsonooneatthetopismakingbigbucksoffofmyfamilymembersneeds.Thesystemis"NHgrown"andrunsfairlysmoothly.HavingspokenwithfamiliesacrossthecountryIamwellawarethatwehaveoneofthebestsystemsinthecountry!

11/26/201310:46AM

164 supportsandservicesprovidedtohelppeoplewithdisabil i tiesworkandl iveinthecommunity 11/26/201310:25AM

165 Itiscommunitybasedwhichisimportantforthepeoplethatreceivethebenefits.It'simportantthattheyarepartofthecommunity.

11/26/20138:04AM

166 il ikeeverythingaboutmedicaid,becauseithelpspeoplehowneedhelpwiththerehealth.noteverybodyhavewhatsomepeoplehaveandthisishowitswecanhelpourself.

11/25/201310:51PM

167 Mydaughterseesspecialistin3differentstates,multiplehospitalsandsheseeswhosheneedstowithoutquestionorwaitingforapproval.

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168 Isveryhelpful.Igetsometimeawaywhilepayingforsomeonetowatchmytwodevelopmentaldisabledchildren.Iwouldnotbeabletogetmypeacewithoutthefunding.Thankyou!

11/25/20138:36PM

169 Iwantmyareaagencytostayl ikeitis.Keepthemcosoutofmychildslongtermcare! 11/25/20133:58PM

170 Accesstopeopletotalkwithaboutoptionsandknowingtheyarefromourareaandawareofourcommunity.

11/25/20133:24PM

171 Il ikethatthewaitl istismuchshorterthaninotherstates. 11/25/20131:57PM

172 LongtermcareinNHshouldembracealloftheoptionsthatareavailableandeffectiveinotherstates.Itcouldbedoneatfarlesscostandfarmoreeffectively…especiallyforpeoplewithautism.

11/25/20131:38PM

173 ThepeopleIhavetalkedwithinreferencetomynephewhaveallbeenverysupportiveandhelpful. 11/25/201312:36PM

174 DayaswellasResidentialservices.Dayservicessiteseenbyfamiliesandguardiansasasafeplacefortheirindividualstoseefriends,partic ipateinactivities,andbasetheir"communitypartic ipation".

11/25/201311:05AM

175 Il ikethattherewasanoptionofavendorserviceformyUncle,becauseheneededtobeinaplacethatwashishomewithstaffcominginandout.Ididn'twanthiscaregivertoburnoutandthenhebetheonewhohadtomoveagain.Thehomecareprovidermodelisawonderfuloptionforsomepeople,buthavingchoiceisimportant.Iwouldalsol iketoseemoresupportedl ivingoptionsforpeople,especiallyalloftheyoungpeoplecomingoutofschoolwithAutismwhocouldreallybenefitfromanindependent,socialenvironmentwithjustenoughoversitetokeepthemsafe.ThestateofNHdoeswell,andIhopethatitkeepsexploringnewmodelstogiveeveryonetheoptionsthatcanworkforthem.

11/25/20139:43AM

176 525serviceshasallowedmyfamilytostayintact.Myhusbandwasforcedtoresignfromhisjob,andtheAreaAgencymadeHolly'schanges(medically,emotionally,andphysically)possible.MyhusbandreceivesAdultFosterCarestipend,Iworkfulltime,andmysister'squalityofl i feistwo-foldedbecausefinancialneeds(mortgage,uti l i ties,insurances,etc.)aremet,allwhilemysisterishappyandcaredfor.

11/25/20139:30AM

177 yes,thedirectsupportpersonalthatdeliverthedailyservicesshouldberequiredtogetcertification.ThestateofNHshouldadoptthepracticesandstandardsoftheNADSP.Today,thoughtheDSPindividualsaresensitiveandresponsivetothesepopulations,theylackthenecessarytrainingandskil lstodelivertheservices.

11/25/20138:56AM

178 TheindividualsatourlocalAreaAgency,CommunityPartners,understandmyson'sneeds.Theyknowourfamilyandseektoprovidetheservicesthatwil lallowmysontoremainathomeandinourcommunity.

11/25/20138:53AM

179 Delayimplementation…ofStep2.Thisiscomplicated…verycomplicated.Morecomplicatedthananyonecouldhavepredicted.It'sreasonableandappropriatetodelay.Let'sfurtheranalyzeanddevelopaplantoensurethewelfareandsafetyoftheindividualswhouti l izeLTSS.Ifwehaveasolidplanthatproveshowwewil lmaintaincarewhilecuttingcoststhenwecanmoveforward.Wemustbeverythoughtful,cautious,andcarefulasthissignificantlyimpactsyourfellowc itizens.Thelegislatureandexecutivecouncilmadeahastydecision.Timetostepbackandrethinkthings.

11/25/20138:49AM

180 Itisconsumerdirected,communitybased,andfocusedontheneedsoftheindividualratherthanthe"group"

11/25/20136:50AM

181 Needtoworkc loselywiththosethatneeditanditneedstobebetterfundedtoreachallwhoneedit. 11/24/20137:24PM

182 Peopleknowmyadultsonandhisfamily.Theyunderstandthecommunitywelivein.Ifservicesturnintoanythingl ikewhenyoucalltheinsurancecompany?wearealldone!

11/24/20137:16PM

183 Localcontrol,areaagencies 11/24/20132:39PM

184 Il ikethesystemthewayitis.Ihopetherewil lnotbemuchchangeformysonsincehehasprivateinsurancethroughmyhusband'semployerandthenMedicaidsecond.Medicaidonlypicksupwhatmyson'sprimaryprivateinsurancedoesnotcover.

11/24/20131:26PM

185 Iloveworkingwithmyareaagency.Theyhaveknownmysonsincehewas3yearsold.Mysonwouldnotbeabletogetalotoftheassistanceheneedsinl i fewithoutMedicaidlongtermcare.

11/24/20138:00AM

186 Noreferralsneeded 11/23/201310:21PM

187 WeverymuchlikeworkingwiththepeopleinourAreaAgencybecausetheytakethetimetogettoknowmysonandhisneedspersonally.Theycometothehousetohelpestablishabudgetthataddresseshisindividualneeds.Wearethenabletomanagehisbudgetinwaysthatbestmeethisneeds.Thisfamilycontrolisimportanttous.ThepeopleintheAreaAgencyareawonderfulresourceforusandwe'dbelostwithoutthem.

11/23/20137:48PM


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188 ittoocomplicated 11/23/20134:18PM

189 Iamconcernedaboutwhatmychildwil ldowhensheagesoutoftheschoolsystemandiflocalagencieswil lhavethemoneytoprovideanyservices.Ihavebeenwaitingforayeartogetrespitecareforher.

11/23/20133:52PM

190 Il iketheabil i tytochoosethetypesofservicesandprovidersformychildren 11/23/201311:58AM

191 MychildgetscareproviderservicesthroughtheLRCSCfor20hoursaweek.Iappreciatethisprogramasitgivesheractivitiesoutsideofthehomethatareenjoyableforherandvaluabletoalocalrestaurant.

11/23/201310:08AM

192 Thepeopleintheagenciesmyfamilydealswithunderstandthediffiulties.Whenafamilymemberdropstheballanddoesn'tdowhatneededtobedonetheytrytohelppickupthepieces.i.eSisterlostmeadbecausealthoughshewasablegetherdocumentstogether(fi l ledoutforms,senttoemployerfordocumentation,andpickedthemup)shefellintoadepression/anxietyattack(duringwhichshecan'tleaveherhouseoreventakecareofherownbasichygieneneeds)offandonanddidn'tdeliverthemontime.Whenshefinallyshoweduphercaseworkerhelpedgetherbackon.35yroldbrotherwhohasbeenlivingwithParentsbecameimpossibletol ivewith(abusivetofather,whoisinmidstageofAlzheimers)andmothercalledforhelpandtheywereabletofindhimaplacethatday.Notidealandhewon'tbeabletokeepitwithoutc losesupervision,buttheywereabletohelpintheemergency.Whenfathercalledaboutapossiblealternativesolution.iefindinganapartmentforheandhisfriend(whoarebothinthisroominghouseindividuallypaying475)topoolresourcesandbeinabetterenvironment.Theideawasconsideredasapossibleoptionandnotsummarilydismissed.Thewill ingnesstokeepthefamiliesintheloopandlookforoptionstokeepthedisabledpeoplepartofsociety.

11/23/201310:04AM

193 Icangotolegislativemeetings,actions,massage,gym,scouts,bikeriding,skiingbecauseIhaveinhomesupportsthatletmegooutofmyhome

11/23/20138:34AM

194 HisCMhasbeenwithhimhewas15yearsold.Sheadvocatesforwhathewants,hisprogramisPersonCenter,asitshouldbe.Mysonwantal i feofhisown,onehecanfeelsafeandsuccessfulinbearesponsibleyoungadult.ForthisheneedsoversiteandtheConsumerDirectedProgramthroughMedicaidfundsprovidesthisforhim.

11/23/20137:52AM

195 ProvidedservicesaremanagedbyacommunityorgplanningmtgsareatmyhomeIgettoknowthecasemanagertheyknowthecommunityresourcesandrespondquicklywhenneeded

11/23/20137:46AM

196 IthankGoddailythatCommunityBridgesandNHHealthandHumanservicesareavailabletousasafamily.Lifeishardbuttheyhelpalot.

11/23/20137:44AM

197 Shouldnotbesodifficulttogetchildrenapproved.Wearesti l l waitingforservices.Takestoolong. 11/23/20136:27AM

198 Theapplicationprocessisfartoocumbersomefortheelderlypopulationtonavigate. 11/23/20135:38AM

199 theservicesmysonreceivesfromCommunitsybridgeshavebeenfantastic duetothedirectsupportstaff.Everythingshouldbedonetosupportthedirectsupportworkerstoincreasetheirpay,benefits,andsatisfactionwiththeirwork,sothattheyremainonthejob.thankyou.

11/23/201312:30AM

200 Beacuseoftheservicesmyfamilymemberreceives,sheisabletoworkpart-time,whichpaystaxesaswellaspayingintomedicaid.

11/22/201310:32PM

201 Leavewhatworksalone!Chaoswithinthesystemoranewsystemwil lgravelyaffectindividualsandtheirfamilies!Thissystemworksandthepeoplerunningthecurrentsystemarepasstionateaboutwhattheydoandhavealotofknowledgeindoingit!

11/22/20139:58PM

202 none 11/22/20138:58PM

203 Thejobsupports,withoutwhich,mysonwouldbeunabletowork. 11/22/20136:40PM

204 Histeambothmedicalandinhomecommunitysupportsreallyl istenstomyconcernsforhimandactsonthoseconcernstomakehisl i feveryworthwhileandenjoyableforhim.

11/22/20136:11PM

205 Familydirectedservicesinterviews,hires,andtrainstheirownstaff.Manyareafraidthiswil lnolongerexistwithPhase2implementation.

11/22/20135:51PM

206 Itworksasanonprofit.Moreresourcesgotothoseinneed,ratherthanl iningthedeeppocketsoffor-profitorganizations.

11/22/20135:32PM

207 Whileitisc leartomethatthecompaniesprovidingdirectservicetousareprofitingfromtheprovisionofthisservice,Idonotfeell ikethereisan/additional/layerofpeopleinbetween(aka,somerapacioushealthinsurancecompany)attemptingtoskimevenmoreprofitoffthetop.

11/22/20135:25PM


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208 Verydifficultworkingwiththestateemployees.Seldomdotheyreturnphonecalls,oftenrudeandnothelpful.Mostemployeesfromthestatelackknowledgeofhowtomakethesystemclientfriendly.Seldomdotheyunderstandhowdifficulti tistocareforadisabledandmedicallyneedyperson.Someoftheregulationsarenotnotgearedtomakingthel ifeofthec lientorfamilyeasy.

11/22/20135:10PM

209 AtthistimethelongtermsupportsareprovidedbytheAreaAgencysystemandtheydoanoutstandingjobatitTheyalsoperforminaverycosteffectivemanner.Ifi tain'tbrokendon't"fix"it!

11/22/20133:50PM

210 Itcannotbereplacedandthere'snomoreeffic ientalternative. 11/22/20133:41PM

211 Theareaagencysysteminthisstatehasbeenamazing.Theyhavebeenabletoprovidenecessaryservicesandsupportwithveryl imitedfunds.Theyknowmydaughterandherneedsintimatelyandtrulystayinvolvedwithourl ives

11/22/20133:40PM

212 Personalizedservicewithregularchecksonefficacy 11/22/20133:39PM

213 Localcontrolofservicesreceived. 11/22/20133:39PM

214 IamacaregiverforapersonwithDD,24/7personalcarerequired,alsopureedfeedforeating,nonverbal,couldneverl iveonherown....

11/22/20133:38PM

215 Itislocallycontrolledwithpeoplewhoknowtheindividualwhoisbeingcaredfor. 11/22/20133:37PM

216 Confusedifthereisaprogram,orjustacollectionofservicesthatarecobbledtogethertohelpsupportpeoplewithlong-term-complexneeds.

11/22/20133:34PM

217 no 11/22/20133:33PM

218 Thecurrentnon-profitareaagencysystemislocalandisexperiencedinprovidingthelong-termservicesneededbymysister.Moneyprovidedbythestateandfederalgovernmentsforservicesforallindividualswithdevelopmentaldisabil i tiesoracquiredbraininjuriesgoestoservicesversusbeingsyphonedofftoprovideaprofitforlargecorporations.Moneythatwil lgotowardprofitmeansfewerand/ordilutedservicesforindividuals.

11/22/20133:32PM

219 wishthebudgetwasbigger 11/22/20133:06PM

220 personalchoiceofproviders,andtypeofcareprovided. 11/22/20133:01PM

221 thededicationofthecaregiversandthecommunicationonadailybasisifrequested 11/22/20132:53PM

222 Asapartic ipantinFamilyDirectedServices,Iamabletomakechoicesabouthowmysibling'sbudgetshouldbespent.

11/22/20132:50PM

223 Iappreciatethatitcanbeusedforequipmentthatourprivateinsurancewil lnotcover. 11/22/20132:32PM

224 Whenmyfamilymemberneedshelporanswers.Wegetit. 11/22/20132:15PM

225 no 11/22/20132:11PM

226 Theabil i tytohaveconsoldatedfundingthatallowsustohaveanholistic approachtotheservicesmydaughterneeds.Itisflexibleandnottiedtotaskanalysisandpredeterminedunitfunding.Wehavebeenabletousethesamefundingtosupportourdaughterwhenshel ivedwihtus,thenl ivedwithsomeoneelse,thenl ivedonherown...wedidn'tneedadditionalfudningasherc icurmstanceschangessincewehadtheDDconsolidatedfundingapproach.

11/22/20131:55PM

227 Itdoesgivemysonabetteropportunityforhimtol iveasindependentlyaspossibleandhasallowedustohavehimsecuredandadjustedwhilewearesti l l al ive.Thoughthathascomeataveryhighcosttousfinanciallyandemotionally.

11/22/20131:54PM

228 plentyofwastenowonthebacksoftaxpayers.NotverymuchthatIl ike. 11/22/20131:53PM

229 weareveryconcernedinchangestothesystemandhowwereceiveservices.Itwouldbeafinancial,emotionalandphysicaldetermenttoourl ivesiftherewerenegativechanges.

11/22/20131:52PM

230 AreaagenciesareHORRIBLE.Therearenooptionsandifyouadvocateorquestionsanythingyouarethenpunished.

11/22/20131:41PM

231 IhaveexcellentsupportfromCommunityPartners.Theyareagodsend. 11/22/20131:29PM

232 Thereisastrongfamily/consumerpresenceinthegovernanceofthesystem.Myareaagencyislocalandhasbuiltrelationshipsinmycommunity.

11/22/20131:06PM

233 Thequalityandbenefittorec ipientsofcarecannotbereplacedorreplicatedbynon-local,non-communitybasedpersonnelorsystems.Thepersonalrelationshipsandlocalnetworksofsupportthroughoutacommunity(wherepeopleactuallyknoweveryone)iswhatmakesthecareprovidedappropriate,accessible,affordable,andhavemeaning.

11/22/201311:46AM


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234 Yes!Thelocalareaagencyengagesmeandmywardinplanningandbudgeting.Weareverymuchinvolvedandpartoftheprocess.Wereceivestellar,personalizedservicesandsupports.Theareaagencyisabletorespondtous.Thevendorisabletoengagewithus.Anyissuesaredealtwithexpedientlybecausethisisalongtermrelationshipnetwork.

11/22/201311:33AM

235 Individualizedsupportprovidedtofamilies. 11/22/201311:29AM

236 IvaluetherelationshipthatwehavedevelopedwiththelocalAreaAgencywhoadministersandoverseesthesupportsmydaughterreceives.Il ikethefactthatwehavechoiceandcontroloverherservices.Il ikethefactthattheservicesareprovidedforandmanagedlocallybypeople/agencieswhoarelocalandfamiliarwithourcommunity.Il ikethefactthatmyopinionisvaluedbythelocalproviders.

11/22/201311:18AM

237 Thereareotherswaystocutbackwithouteffectingtheneededdirectcare 11/22/201311:11AM

238 Thefreedomitgivesmeknowingmydaughteris"whereshewantstobeandhasfriends,"aswellasthewonderfulround-the-c lockstaffingwho'sabletoassistherbetterthanIevercould.Itwasextremelydifficultforhertoseeheryoungersiblingsgrowupandmoveonwiththeirl i fe.Now,shefeelsshehasgrownup,hasherownapartmentonafarmandshe'shappy.AndIhavethepeaceofmindknowingIdon'tneedtoworry24-7aboutmeetingthoseneeds.

11/22/201311:10AM

239 IcanadjustthebudgetedamountsifIneedtousemoreservicesinoneareaduetoincreasedneedusingself-directedservices.

11/22/201311:07AM

240 Asparentswewouldfindawaytotakecareofourdaughter,buttheprogramhashelpedusestablishalong-termapproachthatwefeelfairlyconfidentwil lgiveourdaughtertheabil i tytol ivefairlyindependentlywithnecessarysupportswithoutbecominganamelessdependentofthestate,evenafterwearegone.

11/22/201311:02AM

241 Thankgoodnessforit! 11/22/201310:53AM

242 Myareaagencyhelpsorsonandusnavigatethesystemandtakecareofmanyofthedetails 11/22/201310:50AM

243 Helporganizationsmakeittohardtogetservices.ie...Riverbend 11/22/201310:18AM

244 Theabil i tytomanagethefundssoservicesaretailoredtotheneedsofmyson. 11/22/201310:17AM

245 peoplearefriendly 11/22/201310:16AM

246 Itisimportanttohelppeoplewhocan'tmakeenoughmoneytol iveon. 11/22/201310:15AM

247 Il iketheabil i tytoselecttheareaagencyweworkwith.Wehaveusedthisabil i tytochooseoneagencyoveranotherandfearthatwewil lnolongerhavethisvitalchoiceoflong-term-careprovider,butwil lratherbe"stuck"withone,goodorbad.

11/22/201310:10AM

248 Veryconcernedthatsteptwoisgoingtol imitservices-whatdoinsurancecompaniesknowaboutFCandrespiteandcommunityinc lusion?

11/22/201310:01AM

249 Withinourfamilymember'sbudget,wehavethefreedomtocreateaprogramofservicesandtochoosetheproviderswefeelwil l bestmeetourneeds.Wehavespecific goalsforourfamilymember,asshehasforherself,andcurrentlyhavetheabil i tytomakethemhappen.

11/22/20139:51AM

250 Verycomplicatedsystem,andtimeintensive.MyunclealmostendedupinaNFbecauseittooksolongtogetservices.

11/22/20139:48AM

251 IbelievetheamountofpaperworktoisneededtokeeplongtermcareavailabletothepeoplethathaveitandhavehaditbecomesverytediousandfatigueIng.EspeciallywhenIhavethefatiguesyndrometobeginwith,thatgoeswithmycondition

11/22/20139:45AM

252 It'sasystemthatworkswellwithexcellentresponsetimefromcurrent,localcasemanagersthathaveworkedwithmyfamilymemberfor11years.

11/22/20139:45AM

253 Caremanagementthroughthedepartmentofspecialmedicalservices--thisisessentialtokeepmayainthepreventivecaredoctorsandoutofemergency/hospitalizationtypeservices.Thenursingsupport(LNA)thatwereceiveonadailybasisallowsmetowork;withoutitIcouldn'tworkandwithadisabledhusbandIwouldl ikelybeonwelfare.TransportreimbursementisavailabethoughIwishitwereeasiertoaccess(lotsofpaperwork--veryparticularabouthowitisfi l ledout,etc).Choiceofdoctorstoseeisalsoveryimportant--whilethemajorityofherservicesareatDHMC--shehasdoctorsinBostonandVermontaswell.

11/22/20139:32AM


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254 Abil itytoreceivesupportfrommylocal,communityagencyoverthephoneorinperson.Ireceivepersonalhelpforalmostanyquestion,concern,situationthatcomesup.Theyareproactive,keepingmeinformedofpertinentinformationandsuggestionsthatrelatetomychild/familyneeds,aswellasreactive,respondingwhenIcontactthem.Theyarecommunitybased,knowtheneedsofthosetheyserve.

11/22/20139:29AM


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14.71% 70

36.34%173

21.43%102

24.37%116

28.99%138

38.45%183

22.06%105

25.21%120

Q11Whatdon'tyoulikeaboutthecurrentNHMedicaidLong-Term-Careprogram?

(Chooseallthatapply)Answered:476 Skipped:416

Itishardtouse

Itiscomplicated

andconfusingIhavetotalktotoo

manypeople

Itishardtoqualify

forThe

spend-downis

confusingItdoesn't

coveralltheserv icest...Idon'thave

enoughchoice

ofserv ice...Idon'tfeellikeIget

thesame...

Itdoesn'tpayataratehighenoug...

0% 20% 40% 60% 80% 100%


Itishardtouse

Itiscomplicatedandconfusing

Ihavetotalktotoomanypeople

Itishardtoqualifyfor

Thespend-downisconfusing

Itdoesn'tcoveralltheservicesthatI,ormyfamily,needs

Idon'thaveenoughchoiceofserviceprovidersorspecialists

Idon'tfeell ikeIgetthesamequalityofcareasotherpeoplewhohaveprivateinsuranceorwhocanaffordtopayforservicesthemselves


36/155

52.94%252



1 Itdoesn'tpayataratehighenoughtokeepgoodpersonalcareattendantsordirectsupportproviders..times1,000

12/8/20135:00PM

2 Theissueoftherateofpayforprovidersishuge.WehaveahardtimegettingLNA'sduetotheLNA'sbeingabletogethigherpayfordoingstaffreliefand/orgettingbenefitsthroughnursinghomesandhospitals.Thishasbeenanongoingproblemforquiteafewyearsnow.Forinstance,forthehoursweneedanLNAfor-whichweareallotted40hrs/wk-I'mluckytobeabletobestaffedfor30hrs.I'magingandI'mgettingverytired.Ialsothinkthatsomewherealongthel ines-Medicaidorsomeoneshouldpayusparentstocareforouradultchildren.Weareburdenedbynothavinganormall i feonceourkidsaregrown.Someareburdenedbyhavingtol iveoffthesystemandcomeretirementage-wehavenothing.Weliveonatightscheduleandifsomeonedoesn'tshowforashift-wearethatsomeone.Andshouldwewanttoplaceourindividualelsewhere,wearerequiredtoprovethatwecannolongercareforthem(eventhoughwearetoldotherwisethat'snottrueasmanyfamilieshavehadtodosoinordertodooutofhomeplacement).Idon'tminddoingmysharebutIwouldl ikethestates/governmenttounderstandthatonceourchildrenturnadultthatthat'sadifferentballgame.

12/8/20133:54PM

3 Callsforinformationarehandledrudelyandabruptlybyofficestaff 12/8/20136:19AM

4 Ihavenotcomplaintsatthistime. 12/7/20134:15PM

5 Notenoughservicesinatimelyfashiontokeepc lientssafeintheirhome. 12/7/20134:41AM

6 gettingstarted 12/7/20134:08AM

7 Thereisaveryl imitedpoolofmentalhealthpersonnelavailableandcurrentlynopsychiatristsavailableinourarea.Ifirmlybelievethededicated,caring,compassionatepeoplewhoprovideservicestomydaughterareseverelyunderpaidforalltheydo.

12/6/201310:54PM

8 N/A 12/6/20133:39PM

9 IknowIcanspeakformanyofmyconsumerswhenIsaythatitdoesn'tpayaratehighenoughtokeepgoodpersonalcareattendantsordirectsupportproviders.

12/6/20131:23PM

10 IcannotreplytotheabovebecauseIamnotresponsibleforhercare,hersonis. 12/6/201311:52AM

11 Also,myadultchildisreluctanttousetheseservicesduetothestigmaattachedtohavingalong-termmentali l lness.

12/6/201311:32AM

12 MEADworksverywellformymentallyi l l sonandneitherhenorIfinditdifficulttouse. 12/6/201311:30AM

13 AlthoughIdon'tusethesystempersonally,thefeedbackIgetfromfamilymembersandc lientsisthatmostofthese(prettymuchallofthem)apply.Individualsinthethrowsofacrisisrelatedtomentali l lness,orforolderadultsdealingwiththecomplexitiesofmultiplemedicalconditions,dementia,depression,etc.,itisnexttoimpossibletonavigatethesystemsmoothlyandwithasenseofcontrol.Onagooddayitiscomplicatedandconfusing.

12/6/201311:17AM

14 Idon'thelpmyfamilymemberwiththissoI'mnotsurewhichapply. 12/6/201311:01AM

15 Icurrentlydon'thaveanyissueswiththecurrentsystem.Whilenotperfect,itprovidesmydaughterwiththesupportssheneeds.

12/6/201310:52AM

16 Iantic ipateoneofmorefamiilymembersneededtoaccesstheseserviceswhenreadyfortreatmentbutIdon'thaveexperiencewithhowtheservicesarecurrentlyimplemented.

12/6/20139:32AM

17 IworryaboutManagedMedicaid.Currentsystemcurrentlyworks. 12/6/20139:28AM

18 ItFEELScomplicatedtouse...IfeelverydependentonothertointerpretemybenefitswithNHMedicaidandIamoneofafewpeoplethatunderstandsthesethings,asamentalhealthc lientbecauseIworkedforawhileasac laimadjusterforaninsurancecompanywithtimelinesrules&regulations...

12/6/20139:26AM

Itdoesn'tpayataratehighenoughtokeepgoodpersonalcareattendantsordirectsupportproviders


37/155

19 Again,Ihavenotusedthisservicepersonallybuthaveheardtheabovecomments.OneissueIdonotseeaddressedinhereisintheNorthCountryweareadirectborderwithVermontandIfeelthatweshouldbeabletoreceiveservicesineitherstate.ForexampleifsomeonelivesinGuildhall,VTandgoestoschoolinGroveton,NHandneedsmentalhealthservicesitwouldbeeasierforthemtoreceivetheseservicesinGrovetonbutinsteadtheymusttravelabout1hourtobeseeninCanaan,VTorSt.Johnsbury,VT.IalsoknowofsomeadulthomeproviderswhowouldbeagreatmatchforthedisabledNHadultbutcannottaketheminduetoMedicaidguidelines.

12/6/20139:25AM

20 Atfirstitwasconfusingtogethismedication.ButitiseasierasIunderstandthetimingisimportant.Onehadtomakesurethatmedicationwasinplacebeforethe1stofthemonth.

12/6/20139:15AM

21 Abjectpovertyissti l l arealityecenwithbenefits. 12/6/20139:01AM

22 Iahveheardalloftheabovefrompeopleusingtheseservicesandcouldusemoreforsafetyorcomplicatedhomesituations.

12/6/20138:58AM

23 longwaitforservices 12/6/20138:29AM

24 Aswithmostservicespaymenttotheindividualsstopsorareplacedonholdnormallypastthirtydaysofincarceration.Thisservestobeproblematic tothoseincarceratedinreceivingneededservicesandretainingthoseservicesoncereleased.

12/6/20137:59AM

25 Iamnotfamiliarwiththecurrentsystem.Probablyanyoftheaboveisrelevant.TheWORSTmightbehavingtowaitforservicewhileinaCRISISmode.

12/6/20137:33AM

26 Idon'thaveenoughpersonalexperiencetospecify. 12/5/20139:44PM

27 TheNHBureauforDevelopmentalDisabil itiesdoesdesignateAreaAgenciestooverseeservices.However,theBureaudoesnotalwaysoverseeAreaAgenciesverywellandAreaAgenciesaregiventoogreata"power"andmonopoly.Thereareanumberofconfl ic tsofinterest.Thiscanbel imitedbyuseofindependentcasemanagers,aswellasbyhavingindividualvendorscompeteforthefundingforindividualstheyserve,eliminatingthemiddlemanandcreatingcompetitionismorecosteffective,asisindependentcasemanagerswhocanassistinoverseeingthisaswell.Therearesomeimprovementsthatcanbemade,assuggestedabove.However,themanagedhealthcaresystemisnotthewaytogoaboutthis,thats'forsure!!!ManagedHealthCarerequiresMEDICALLYTRAINEDPersonalthatalonewil ldriveupcostforservices,asmedicallytrainedpersonsarealsobyfarbetterpaid.

12/5/20139:22PM

28 Theservicesmysonreceivesarelongoverdueandweretheresultofconsistent,vigorousadvocacybymyhusbandandme.Wehavegonethroughseverall i fe-or-deathsituationspriortoreceivingtheserviceshenowhasinplace.IwishIcouldadmittobeingoverlydramatic ,yetIamnot..

12/5/20138:13PM

29 Notenoughstafftoassistthoseofuswhoarewaitingforapproval.Callsgounanswered. 12/5/20137:54PM

30 MoreinformationisneededbeforeIcanbegintoreallyunderstandthecomplexityoftheprogram. 12/5/20137:32PM

31 TheitemscheckedareonesthatIhaveheardfamiliestalkaboutmanytimes. 12/5/20136:25PM

32 Idon'tfeell ikeIunderstanditverywell. 12/5/20135:50PM

33 timeforapplicationprocessing 12/5/20135:37PM

34 oneskyservicesisgreatandalwaysveryhelpful 12/5/20132:38PM

35 limitsontransportationandactivities 12/5/20131:40PM

36 VeryTrue!!! 12/5/20131:03PM

37 Ittookustoolongtofindtherightagencytohelpusbutoncewedidithasbeenfine. 12/5/201312:41PM

38 ThereisalongwaittimeforABDfundsforsupportedl ivingthatkeeppeopleinnursinghomesandhospitalstoolong

12/5/201312:00PM

39 CurrentlymydaughterhasandLNAthroughanagency.TheInHomeSupportcurrentmodelwouldallowustomanageherbudgetandhirestaffwhichwouldSAVEsomuchmoneybutthefundingforthiswaiverhasbeendecreasedovertheyearsleavinguswithnochosebuttouseMedicaid.PleaselookintoIHSwaiverforthisisthemodelthatworksverywellandcansavemoney.

12/5/20139:17AM

40 Overtheyearstherecipientwouldhavebeenabletogetmoreassistancemakingtransitioningandmedicalcaremoreeffectivehowe4vernooneintheofficesevertoldmetheseserviceswereavailabletoher.

12/5/20135:18AM

41 Ifeelthatthelocalcontrol,throughtheareaagency,addressesmyconcernsverywell.IfIhavequestionsorconcerns,theyareaddressedimmediately.

12/4/201310:11PM


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42 IneverknewthattheAidtothePermanentlyandTotallyDisabledandtheIn-HomeSupportswereceivethroughGatewaysCommunitywasconsideredNHMedicaidLong-TermCareprogram.Iamstil l inthedarkandaboutthisprogramandthebestexplanationIhavereceivedsofaristhatmedicaidhasdifferent"bucket"ofmoniesthatpayfordifferentservicesunder"waivers"-allofwhichisveryconfusinganddifficulttonavigate.Iamalsoverydiscouragedthatitdoesn'tcovercompoundedmedic inesandspecializednutritionneedsandotheroverthecountermedic inesneededforherbowlregimeandincontinenceduetoherdisabil i ties.Ipayover$400amonthfortheseitems.

12/4/20139:59PM

43 Thequalityofeyeglassesmakesthembreakeasy.Myraflexframescanbechewed,buttheydonotbreakandsoabetterqualitymetalframeandmyraflexframesshouldbeabletobereplacedandrepairedwhenneeded.

12/4/20139:11PM

44 SPENDOWN!NH'scommunitymentalhealthservicesarehorrible(Ican'temphasizethisenough!!!!!!!!!!!).Lackofchoiceinmentalhealthservices.

12/4/20137:43PM

45 theannualforms/reportsthatwehavetocompletecanbetedious,especiallyiftherehaven'tbeenanychangessincethepreviousyear.

12/4/20136:29PM

46 noexperience 12/4/20133:22PM

47 doesnotcoverdental 12/4/20132:06PM

48 Thequalityofcaregiverswhoarewil l ingtoprovideservicesattherateofferedisverylowanddifficulttotrust.

12/4/201312:20PM

49 TransportaionservicesforMDappointmentsareneededforambulatoryresidentsofassistedl ivingfacil i ties/nursinghomeswhocannotdrive.

12/4/201312:13PM

50 TheindividualbudgetshavenotincreasedinMANYyearswhichresultsinadecreaseofserviceseachyearduetoincreasedprogramcosts

12/4/201311:49AM

51 Seeprevious 12/4/20139:47AM

52 WhileIthinkthesystemshouldhaveamoreformalsystemofContinuousImprovement(viametrics,measurements,etc),Idon'thaveanyspecific complaints.AllIamsayingisthatnosystemisperfectandANYsystemshouldhaveaformalizedsetofchecks/balances/improvementprocess.

12/4/20139:37AM

53 Iwouldl iketobeabletotakemydaughtertoanydoctorbutIappreciatethefactthatIcantakehertosomedoctor.ItwouldbeeasierforusifmoredoctorswouldacceptMedicaid.

12/4/20139:36AM

54 Iamabitconcernedabouthavingtochoosedifferentinsurancevendorrecently.alsodentalcareisabsolutelyaservicethatrequirescoverage.IcoverJessundermydentalplanbutwithoutiti twouldbehardtopayoutofpocket.

12/4/20139:30AM

55 N/A 12/4/20139:29AM

56 Thispopulationfindschangedifficult,butthecaregiverscannotexistonthelowpay,andtheyleave... 12/4/20136:53AM

57 Iamafamilymemberthatprovidesin-homepersonalcareanddirectsupporttoasibling.Therequiredpaperworkhasl ittlesignificance.

12/3/201311:13PM

58 Durablemedicalequipmentisdifficulttoobtain,andattimesnotpreventitive. 12/3/20139:27PM

59 Toomuchofaperson'sbudgetiskeptbyareaagenciesforadministrativecosts...(andIamnottalkingaboutcasemanagers).Thepeople/staffthatfamiliesMOSTrelyonarepaidwaytool ittlefortheworktheydo.Casemanagersaregettingmoreandmorec lients,withNORAISEinfinancialcompensationforthis,andtheamountoftimetheycansupportfamiliesisdrasticallyreduced.Also,manyfamiliesgetdifferinginformationaboutprogramingandoptions.

12/3/20138:25PM

60 NovisionorDentalcareavailable.Costlytransportation. 12/3/20136:13PM

61 Asinmanyprogramspeoplecomplainbutwithnodocumentation.Isthisanothersurveythatjustassumespeoplearebeingtruthful?Gooddecentcareisamust...buttohavethechoicesthatprivatepayhasisnotpartofit.

12/3/20135:30PM

62 Ihavenocomplaints 12/3/20135:10PM

63 Untilandunlessyoureallydiginandlearnthesystemit'sconfusing.HonestlyIsti l l don'tunderstandwhereallthepiecescomefromandsomeoftheplanseems'patched'togethersoMegangetswhatsheneedsbuttheMooreCenterfolksreallyhavedoneagreatjobingettingdonewhatneedstobedone.

12/3/20134:21PM

64 SofarIhavenocomplaints 12/3/20134:09PM


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65 Ifeeltherearel imitedexpectationsforcontinuedgrowthanddevelopmentfordisabledindividualsoncetheybecomeadultsatage21,especiallyintheareaoffunctionall i teracyandlearning.Thisisevidencedbylackoffundingandqualityprogramsavailabletodisabledadults.Therigorsoflearningshouldcontinuefortheseindividuals,especiallyyoungadultsage21-26astheirtrajectoryforlearningisalongercurve.Iunderstandthattomaintainanintensityinserviceswhichinc ludesfunctionall iteracylearningoverthel ifetimeofadultswithdisabil i tiesisveryexpensive,butIwonderifatieredapproachtofundingcouldbeadopted?Forindividualsage21-26thereisaportionoffundingavailableforcontinuedl iteracylearning(most21-26yearoldsgoontohighereducation).Thismighthelpincreasethenumbersoftheseindividualswhoactuallygetemployedoncetheyare26andkeepajob....andultimatelylowercostoftheircareasolderadults.Additionallybecauseofthecurrentexpectationforcustodialcarevs.ongoinglearning,expectationsforserviceprovidersshiftstocaretakeror"babysitter"andthisisreflectedintheratesofpayforpersonnelworkingwithdisabledadults.Thismindsetisalsoreflectedintheveryl imitedavailabil i tyofserviceproviderswhohaveexpertiseinprovidingongoinglearningandbehavioralsupporttoadultswithdisabil i tes.

12/3/20133:23PM

66 Thereisn'tanythingIdon'tl ikeaboutit.It'snotbrokenanddoesn'tneedtobefixed. 12/3/20131:49PM

67 Iwouldl ikehelpwithdental.Everythingelseiswonderful. 12/3/201312:41PM

68 Gatewaysisapooradministrator. 12/3/201312:19PM

69 Thereisnochoiceinautismservicesinmyareaagency. 12/3/201311:47AM

70 Goodpeopleneedtobehiredandpaidwell.Theyneedbenefits:healthinsurance,vacationpay,goodhourlypay,sicktimeetc.Manygreatpeoplehaveleftduetolowpayment.Thehigherupsgetallthemoneyfromourfundingandtheygetalousy$10$11hr.Thesefolksarenoteasytohandleinsomec ircumstances.Weentrustourfolkstotheircare.Changeforthesefolksisverydifficultandchallengingbuthappensoftenduetolowpayandnotbenefits.Thisneedstobechanged.

12/3/201311:41AM

71 Availabil i tyofqualifiedprovidershasbeenaproblem.IFIcanfindatrainedprofessional,Iamunabletopaythemattheratecommensuratewiththeirexperience.Also,asIworkoutsidethehome,itbecomesdifficultformetoperformthedutiesoffindingacaregiver,trainingthem,reportingmonthlyonprogress,ensureingtheyarebeingpaid,performingyearlyreviews,providingmeritincreases,etc..

12/3/20139:04AM

72 Lackofcommunication/knowledgesharingbetweenDHHSdeparmentsprovidingservicestothedisabledindividual

12/3/20138:55AM

73 Seriouschallengesinaccessingacutepsychiatric services/NHHorsimilarbeds. 12/2/201310:56PM

74 Notknowingalltheservicesthatareavailableandweareeligablefor-unti lspeakingwithavarietyofpeopleatconferncesorotherevents.

12/2/20138:17PM

75 Asasupportstaff,therearemanyrulesandregulationsthatpeopledonotunderstandandtherequirementsaremany.

12/2/20134:22PM

76 Many,manyproviderswon'tacceptyouasapatientifyouareonMedicaid.Youaretreatedasasecondc lassc itizen.

12/2/20134:09PM

77 Putsal ienonanypropertyowned 12/2/201310:32AM

78 Rulesonwhatcanbepaidcanbedifficulttointerpret. 12/2/20139:00AM

79 Itisachallengetofindhelpandstaffing. 11/29/20135:57PM

80 Wehavenot\hada"raise"intenyearsthereforeIcanbuyfewerservice.Andthereisnotenoughmoneyforthedurablegoodsneededinhomemodificationspecifically.

11/29/20131:23PM

81 ThecurrentPhaseTwohasnotbeendefinitelyimplementedyet.Ifear,however,thatifi tshouldbethatIwouldbecheckingalltheaboveboxes,forthereasonsIpreviouslydescribed.

11/29/201311:13AM

82 Idon'thaveanycomplaints.AnytimeIcallforassistancefromthestaffofmylocalareaagency"Gateways",any&allconcernshavebeenansweredandresolved.

11/28/20133:17PM

83 Idon'tl ikethatweneedtogoandfighteverytwoyearsforadequatefundingforDevelopmentalServices.Ratherthancontinuetomakecutsinthebudget,thelegislatureneedstoexplorenewsourcesofrevenue.

11/27/201310:48PM

84 Thereisnoannualadjustment.Ifyouhaveabudgetin2011...itwil l bethesamebudgetin2014.Costschange-wewanttokeepgoodpeople(theyonlypay$14perhourandoffernoinsurance)anditisdifficulttodoiftheeisnoCOLAavailable.

11/27/20135:58PM

85 Ihavenodislikes 11/27/201311:23AM

86 Asaserviceproviderwhohasworkedintwostates,itisanexcellentprogram. 11/27/201311:14AM


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87 Myfamilyishappywiththeprogram.Nocomplaints.waittheydidcutthehoursmyhusbandwasgetting.Itisonly3hoursbutitdoesmakeadifference

11/27/20138:45AM

88 Doesn'tcoverappliedbehavioranalysistherapies 11/26/201312:17PM

89 Notenoughdoctorswhotakeit. 11/26/201311:01AM

90 Ihaveheardthatthewaitl istcanbefrustratingbutwehavenotgottentherejustyet. 11/25/20133:25PM

91 Limitedchoices,andMANYofthepeoplemakingdecisionsaboutwhatisavailableandsupported(i.e.theIODandareaagencyadministrators)haveNOIDEAwhatwouldbethebestchoiceforDDindividuals,butcontinuetol iveinaboxandtowthepartyl inefrom40yearsagoaboutl iving"independently".

11/25/20131:41PM

92 Notintheprogramyet,butamgettinggreatservicesfromCommunityBridgesformynephew. 11/25/201312:38PM

93 Toomuchmoneygoestotheareaagencythatcouldbespentonthechild.Cutoutthemiddlemanandhaveitbemanagedbytherecipientorguardian.

11/25/201310:40AM

94 Thewaitl istisfrustratingformanypeople.Thereshouldbeenoughmoneytocareforourfriends,familiesandneighborswhenwecanseeminglyeasilyaffordtospendbil l ionskil l ingpeopleinforeigncountries.Ourcommunityshouldbeournumberonefinancialpriority.Thelackofmanufacturing/productionandagriguculturaljobsinourstatehampershowselfsuffic ientmanypeoplewithdisabil i tiescouldbe,asroutine,stepbystepjobsareoftenonestheycanmanageandexcellat.

11/25/20139:47AM

95 525budgetsareoverseenbytheareaagencies.ThisisthestatebudgetmysisterreceivesthroughtheAA.Asthesupervisor,myhusbandoverseesthebudget.Unfortunately,theareaagencycangomonthswithoutprovidingusanupdatedbudget.Asaresult,thismakesmonitoringthemoniesdifficult.

11/25/20139:33AM

96 Ithinkthisisaninappropriatequestion.Whatshouldhavebeenaskedishowuser-friendlyisthecurrentsystemandrespondentscouldhaveratedeachcategory.Thiswouldhaveprovidedvaluableinformationabouttheareasthatareworkingwellandwhereweneedtoimprove.Uninformedfolkswhodon'tunderstandthepotentialdifferencesforamanagedcaresystemandwhatwestandtolosemaycheckoffmultipleboxeshere.Step1hasalreadyforcedpeopletosevertrustedlong-termrelationshipswithdoctors/specialists,createdmorecomplicatedapprovalprocesses,andiftheappealsprocessissimilartomyHMOitwil l alsobeexhaustiveandtime-consumingforindividuals.TherealityisthatIfearALLoftheabovewil lbeworseonceStep2managedcareisinplace.Privatehealthinsurancecompaniesworryfirstandforemostaboutmakingtheirprofitandwouldviewmydaughterandotherslikeherasacommodity.Thesystemwil lbedesignedtoprotecttheirbottomline.Thisquestionwon’tprovidetheinformationwereallyneed.

11/25/20139:04AM

97 To-date,thereisnothingnegativeIcansayaboutlong-termcareprogram.IbelievethisisadirectresultofourAreaAgency,CommunityPartners.Theentirestaffarecommittedtomakethel ivesbetterforthosewithdisabil i ties.

11/25/20138:55AM

98 onawaitl ist--gotnothing 11/24/20136:45PM

99 Thisreallyhasn'taffectedusmuchyetasmysonisonly15anddoesnotusemuchoftheservices.Hewillhaveastrongneedfortheseservicestobeavailabletohimwhenheturns21.Iamafraidthoseserviceswil lnolongerbeavailablethen.

11/24/20131:28PM

100 MusicTherapyetc.isundertheRecreationalbenefitscapbutifweareworkingonspecific goalsshouldbecoveredasTherapy.SocialSkil ls,MusictherapyarenotcoveredexpensesbutareprovedeffectiveundertheNationalAutismCenterproject

11/24/20139:58AM

101 ManydoctorsdonotacceptitbecauseMedicaiddoesnotreimbursethemataratethatissustainable-thisforcesmetogotoalesserqualitydoctor

11/23/201310:22PM

102 Yourbudgetgetsset,andthenmidwayduringtheyearthingsthatwereintheBudgetl ikephoneassistance,dentalarethennoteligibleexpenses.Youwantyourchildtobeabletoenjoysocialevents,butthenyousaywecan'treimbursethecareproviderfortheirmovieticket?Whodoyouknowwantstoearn12/hrandthenhavetopay$8outoftheirownpockettotakeac lienttothemovie?IgetthatIasaparentshouldpayformychildtogotoamovieoranevent,butrespiteshouldprovidefortheoutofpocketproviderscost.

11/23/20139:43PM


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103 Thefirst5,Ichecked,arealltiedtogether.Ittakesyears&yearstogettheneededhelp.Manyfactorsinvolved:recognizingthereisaproblem,findingoutthathelpexists,understanding&completingthedocumentstogainaccess;dittothedocumentstokeepaccess;findingthetimetodoallthatandsti l ldowhatisneededandtoprovidefortherestofthethefamily.Ihappentocomefromafamilythatalthoughriddledwithmentali l lnessisveryintell igent.Comprehendingwordsandnumbersareastrength(weaknessorganization),wehaveastrongfamilyandtheablehelpthedisabledandwestruggletocope,Idon'tknowhowanyonemanages.Mymotherdidnothaveaneasytimewhenshewaslearningtheropeswith5difficultchildren.However,atthetimeitwasmorepossibletosupportahouseholdononeincome.Wecannotsurviveonmyhusbandsincomeandtheissuesmychildrenhave(alongwiththeemergencycallstohelpthebrother,sister)preventmefromworkingaregularjob.Sameissuesmakechildcareimpossible.After2yearsoftryingIhaveanaidefor10hoursaweek.However,Ioranotheradulthastobehomebecauseifthereisameltdown(notunlikely)someoneelsehastobethere.Medicalbil lsafterinsuranceareaminimumof$10,000.Ihavetowork.Thereforemyoptionsareveryl imitedastowhere.WhenIamnotdoingdamagecontrol,Iamworking.Itdoesn'tleavetimetoattendinformationalmeetings,maketelephonecallsorfi l l outreamsofpaperwork.IdosowhenIcan,butgettingtocompletionisnothappening.Nowwithparentsdeclininghowdowekeepthedisabledadultsfrombecominghomeless?Thequalityofcareissueisreal,Icanseethedifferencebetweenwhatmyfamilygetsandwhatmybrother&sisterdoissignificant.Ithasmoretodowiththepeopleprovidingthecarethantheactualservices.Theydogetwhatisneededbut,sometimesaretreatedhorriblywhilegettingit.Sometimesjusttoneface&words,sometimesroughhandlingoftheinjuredsite.Becausetheproviderassumesthepersonislyingaboutthepain.Therearealsoverygoodprovidersthatdonotbehavethisway.

11/23/201310:49AM

104 Iwanttoworkforpayandmydayprogramandteamhaven'tbeenabletofindmepaidworkinyearsIhaveahardtimewithpeoplechangingandtoomanygoawaytoofastevenwhenIl ikedthem

11/23/20138:37AM

105 WhensomoneworksitissocomplicatedwithhavingtosendpaystubstoSS,Medicaid,Housing,Hispaymentsconstantlychanges.Allthisforworking3-6hoursaweek.TokeepmysonbusyhevolunteersattehlocalSoupKitchen.Heenjoysthisbecausefeelsl ikeheisgivingback.

11/23/20137:55AM

106 Idon'tgetpaidforthecareIprovideforafamilymemberwhohasadisibil i tyl ivinginmyhouse.Transportationisminimalmyfamilycannottraveltogether.Nogoodplacementoutoffamilyhomeforhousingyoungadultwithddandphysicaldisabil i ty

11/23/20137:50AM

107 therejustisnotenoughmoneyforrespitecare.....Isurecouldusemore. 11/23/20137:46AM

108 Therearen'tenoughpeoplethatprovideservicesinmyareaforrespitecare. 11/23/20137:40AM

109 Mysonisisolatedsocially,andmoreshouldbedonetointegratehissupportserviceswithsomeofthesocialgroupstheareaagencyruns.

11/23/201312:31AM

110 waitingl ist 11/23/201312:20AM

111 AlthoughIdon'tusethe"system"yet,theaboveiswhatothersIknowhavefacedandIhopeIdon'thavetointhefuture.

11/22/201310:21PM

112 Theareaagencysystemisfaulty.Toomuchpowersitswiththeareaagencywhichbelievesthatitcandictateeverythingaboutmyfamilymember'sl i fe.TheAAistoointrusive,extremelyunhelpfulandtakesforevertorespondtoanyrequest.

11/22/201310:10PM

113 Itissometimesveryconfusing.MybrotherandIareRepPayeesandGuardiansforourbrother…butmybrotherscareismanagedbyMDSandwehavehadseveralissuesdealingwithMedicaid/MedicarenotallowingMDStohandlewhatneedstobehandled-evenwithallthecorrectformstobesigned(accordingtoMedicaid,theysti l l tellusthatMDScannotactasourbrother'srepresentative.)Ifearthathewil lneedemergencymedicalcareandtheywil ldelaybecausetheydecidethatMDScannotrepresenthim.It'sjustgettingmoreandmoreconfusing.Itusedtobeprettystraightforwardandeasybutnowitisnotandthepersonwhoisbeingimpactedismybrother!

11/22/20136:53PM

114 n/a 11/22/20136:30PM

115 Thehomecareprogramisinflexible.ItwouldbenicetobeabletouseasmanyhoursasIneeduptoagivenamount,buttochoosenottouseallofthehourswhenwearehomeasafamilywithoutbeingconcernedaboutlosingthosehours.Respitedoesn'tallowforanycarryover.Oursonreceives$300/quarter.Thatisn'tenoughforaweekendaway.Itwouldbegreatifwecouldsaveituptohaveanactualbreak.

11/22/20136:29PM

116 Highturnoverofinhomesupportpersonnelduetolowwages 11/22/20136:13PM

117 Pleasereferencetoquestion9response.Verydifficultcontactinggovernmentemployees.Theyhavenounderstandingofoursituation.

11/22/20135:12PM

118 Itdoesnotalwaysprovidemedicalequipmentthatwouldmakeaperson'sl i femoresafe. 11/22/20133:56PM


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119 unknown,unsure 11/22/20133:39PM

120 Ididn'tevenknowitexisted. 11/22/20133:35PM

121 Itdoesn'tpayatahighenoughratetocovermentalhealthservicessuchasHampsteadHospitalandtherapiessuchashypnotherapyandautismservicessuchasABAlimitsmakeitimpracticaltoperuseonal imitedbudget.

11/22/20132:36PM

122 itdoesn'tcoverdentalservices 11/22/20132:12PM

123 AA'shavetomuchpowerimposingtheirphilosophiesandpolic iesonthosethatneedserviceswithlittleregardandrespecttofamiliesandvendors.Aslongasyouagreewithwhattheytellyouanddon'tchallengeanythingyou'reagoodcustomer.

11/22/20131:57PM

124 Ihavecheckedtheitemsthatapplytomyfamiliybutcouldreallycheckalloftheabove,basedonwhatIhaveheardfromothers.

11/22/20131:56PM

125 butplentyofmoneynotspentwisely.butspenttouseitup. 11/22/20131:54PM

126 Itcanbeconfusingandbureaucratic .Fundingcanbehardtoget.ItcanbedifficulttofindspecialiststhattakeMedcaid

11/22/20131:47PM

127 Legislaturehasgraduallyerodedfunding,whichstressesstaffatalllevels.WhileIamfortunatetohavethecareIneedformyson,individualswithahigherlevelofneedand/orchallengingbehaviorsarenotsuffic ientlysupported.Also,thereisnotenoughchoicesaboutsupportedhousing.Thereisanoveremphasison"adultfostercare,"whichisnotnecessarilyagoodfitforsomeindividuals.

11/22/20131:10PM

128 Theapplicationprocessislengthyandcumbersome,especiallyforfamiliesincrisis,lengthoftimeforapptsandapprovaltaketoolongwhichdelaysptsabil i tytoaccessappropriatecare,spenddownsarehardtomeetandwhenmetthedelayforbeingopenoftenmeansthatneededmedsarenotcovered,

11/22/201312:13PM

129 don'thaveityet 11/22/201312:00PM

130 Can'tthinkofanythingatthemomentthatIdon'tl ikeaboutthecurrentprogram... 11/22/201311:47AM

131 TheAreaAgenciesdonotl ikethe24-7modelofcarethatandmakeitverydifficult. 11/22/201311:12AM

132 RecentlyIwentfromhavingprivatehealthinsurancewithKatieBeckettMedicaidasabackupformysontostric tlyKBMedicaid.Histherapistdischargedhisspeechserviceswhenhehasnotmasteredthegoals.Ibelievethereasonforthisisthedecreaseintheamountofreimbursementthatshereceivesnowandthenumberofsessionsbeingl imited.

11/22/201311:10AM

133 Iratetheprogramasmoderatelysuccessful.Theprogrammingisheavilyweightedwithadministrativecostsandisnottransparent.

11/22/201311:08AM

134 Allthecomponentsoftheprogramseemwellthought-outyetflexible.Wehaveacaseworkerandateamofexpertstoanswerourquestionsandkeepusontopofissuesthatcouldaffectus.Ourdaughtergotagreateducationintheschools,trainingforameaningfuljobandtheopportunitytopursueherinterests.Wecan'tthinkofmuchmorethatcouldbedonetohelpusandhelpourdaughter.

11/22/201311:07AM

135 Redeterminationformsareconfusingandhavetobecompletedsooften.Sometimesapprovalisslow.. 11/22/201310:55AM

136 Wethinkitworksratherwell 11/22/201310:51AM

137 Idon'tl ikethefactthatthepeoplethatyoucountondon'tshowupandlastmintheycalltotellyou.asaworkerithardtoleaveworklastmin.togethomebeforetheschoolbusdropsofftheteenwhocannotbelefthomealoneashehasMR.

11/22/201310:28AM

138 Youdon'tgetenoughtimeforit.Iamnotaskingforhelponsomeonenormalteenwhocandothingsforthemself.IamlookingforhelpforateenwhohasMRandcannotdothingsforthemself.theolderhegetstheharderitgetstotakecareofhim.Athisageheshouldbedoingsomuchmoreforhimself.

11/22/201310:20AM

139 IfmysonwasonlyonMedicaid&notcoveredbymyhealthins.companyImostl ikelywouldhavecheckedmanymoreboxes

11/22/201310:19AM

140 toomuchpaperwork 11/22/201310:17AM

141 Serviceprovidersareconsiderablyfurtherawaythanforprivateplans.Littleknowledgeofservicesavailable,

11/22/201310:16AM

142 directsupportprovidersneedtobepaidal ivingwage!Thisdirectlyimpactsthesupportservices.AnAsperger'sindividualisoftensmarterthanthedirectsupportproviders,whohavenocomputerskil lsorvision,theirownlivesareoftenverycompromised.Iamhoweverdelightedtoseethemhiringrefuges,theyareoftenmuchhighercaliberindividuals

11/22/201310:16AM


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143 Itishardtofindandkeepqualifiedcareprovidersaswellasqualifiedcareproviderstotemporarilyfi l linwhenregularprovidersareunabletoworkduetotheirpersonalneeds(vacation,doctorapts.,sickkids,etc.)

11/22/201310:14AM

144 Aswithmostthingsinl i fe,thosewhohavemoneycanpayforandreceivethebestofservices.Wehavetokeepatightreignonthebudgetandsomeproviderswe'veapproachedwouldnottakethepositionduetothelowwagesweareabletooffer.

11/22/20139:54AM

145 Iworkwellwithintheseguidelinestohavemydaughtersneedsmet 11/22/20139:47AM

146 Idosupplementoutofpocketmypersonalcareattendanttogiveheral ivablewage. 11/22/20139:33AM


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Q12Isthereanythingelsethatyoudon'tlikeaboutthecurrentNHMedicaidLong-Term-Careprogramthatyouwouldliketo

tellusabout?Answered:177 Skipped:715

# Responses Date

1 No 12/9/20134:49PM

2 IguessI'dhavetosayitisnotbetterthannothing.Notforus. 12/9/201312:32PM

3 Forindividualswhoareseverelydisabledandareonmedicationsandwhomweadvocateforasparentsorguardians-it'sextremelyfrustratingtobetoldthatwehavetostartatsquareonewithcertainmeds.Forinstance,mysonhasagaggingproblemwhichistreatedbyProtonixorNexium.Bothworkrealwellexceptforwhenhehasalotofchangeshappeningwhichcreatesmoregagging.Changingmedshasbeenproventoworkincalmingdownthefoodthatcomesupwhenhegags.Thatsaid,inordertohaveadifferentmedprescribed-thedoctorisalwaystoldhehastohaveanupperGIwhichwillNEVERhappen....hecan'tfollowdirections.ThatisfollowedbyhavingtotakeZantac2X'saday-whichdoesn'twork-beforewecanbeprescribedwhatweDOKNOWworks.Thishasbeentheprocedureoverandoveragainandit'sveryfrustrating.Anothertime-weweretoldhehadtoswitchtoCrystaloseforconstipation-Medicaidwouldn'tpickupMiralaxanylonger.TheCrystalosedidNOTwork-hewashavingtobegivensuppositoriesandenemasfrequentlywhichdidn'talwayswork.AfterhearinghimscreamonenightintryingtohaveaBM-Ihadenough.Iemailedthedoctortell inghersomethinghadtobedone.Cometofindout-MedicaidhadstartedpayingfortheMiralaxagain-WHOknewthough?Notus-notthedoc.Inaddition,Medicaidwil lreimbursefortransportationofpharmacypickups.However,thatsystemisflawed.Theywil lonlypayforthetriptoapharmacynearestyourhome.Forus-weuti l izeapharmacythatcandohismedicalsuppliesandhismeds-howeverNHMedicaidwon'tpayforustousethispharmacyasitis2milesfurtherfromourhome'snearestpharmacy.Anotherissuewithtransportationreimbursement-Isendintheformstoonlyhavemanybereturnedfortripstothepharmacyaswhomeverisprocessingthem-statesthedateontheformisnotintheirsystem.Andthatmaybeforthereasonthatjustbecauseaprescriptionisfi l ledonacertaindate-thatIdon'tgettothepharmacytopickitupDAYSlater.TherearetimeswhenIdon'tleavethehouseforaweeksimplybecauseIcannotgetoutduetomysonbeingi l l ,LNA'snotshowing,etc.Ithinkaftersayingallthis-thatsomewheresomeoneneedstolookatthefactthatfamiliesthathavelong-termcareindividualsintheirhomeneedtobeallowedspecialc ircumstancesfromtheget-go.Ourl ivesneedtobemadesimpler.

12/8/20135:18PM

4 No 12/7/20134:16PM

5 Thereappearstobeconfl ic tsofinterest,sincetheareaagenciesareabletoalsobeserviceproviders. 12/7/201310:37AM

6 Thefiveyearlookbackistaxingformostapplicants.Theamountsofpaperisridiculous.Banksandotherprovidersofverificationswouldl iketoproduceelectronicrecordsforthispurposebutthelocaloffices,Iamtold,donothaveawaytoreadtheCDsorwhateverisproduced.

12/7/20134:43AM

7 MyspouseisinanursinghomeandIonMEADandourcasesareoftenmixedup 12/6/201311:00PM

8 Itwouldbebenefic ialtohavestablefunctionalsupportservicesandgeneralwraparoundcaredevotedtothe"longterm"outcomes.

12/6/20133:48PM

9 CurrentlawsdonotholdinsurancecompaniesaccountableforparityinMentalIl lnesscoverage.Insurancecompaniesdonotpayforqualitymentalhealthservicesunlessforcedtobyalawsuit.Andiffamiliesdon'thaveinsuranceortheabil i tytoself-fundcareforthementali l lness,preventativecareisdifficulttoaccessandfamiliesarelefttowatchtheirlovedone'si l lnessdeteriorateunti lthepersonissuic idalorpsychotic .

12/6/20132:31PM

10 Becausetherearenostepdownfacil i ties,PrivateinsurersDENYservicesoutofstateforstepdownservices.ThentheyDenyservicesprovidedatthestatehospitalbecausethepatientsshouldbeinoutpatientsettings.AsaresulttheBILLsfalldirectlytothetaxpayerswhentheInsurersshouldbecoveringservicesiftheywereavailableinstate.Basicallyeveryptwhostayslongerthantheinsurancecompany"precertifies"forinthestateHospital,ispaidforbythestate-eitherthroughtheMedicaidprogram,orduetoDirectexpensebecausethepatientsneverpay.ThestateneedtoFORCEinsurancecompaniestopayforcoveredmentalhealthservicesistheydon'twanttheStatehospitaltocausebankruptcyofthesystem.

12/6/20131:45PM


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11 no 12/6/201311:30AM

12 Therearenotenoughcommunitybasedservices,andthepaymentsystemthewayitismakesaccessingtheserviceschallenging.Forexample,itisofteneasierforanolderadultstogotoanursinghomethantostayinthecommunity,eventhoughthemajorityofolderadults,whenasked,indicatethattheywouldprefertostayinthecommunity.Inadditiontoincreasingcommunitybasedsupports,individualswithmentali l lnessandolderadultsandtheirfamiliesneedaddedsupportandcounselingtohelpthemsetupandmaintainlongtermcareservices.

12/6/201311:22AM

13 UpperValleyofNH&VTdonothaveadequatePsychiatric servicescombinedwiththeDartmouthHitchcockmedicalcenterthatarecoveredbyMedicaidorGreenMountainCareofVT.Psychiatristschargeoutofpocketforservicesinthisarea,makingsupportforfamilymembersalmostimpossibletolocateinthisruralarea.

12/6/201310:00AM

14 Wishitpaidallthetherapiesmysonneed,l ikeABA. 12/6/20139:42AM

15 YES:Clearuptheconfusing....keepallbenefitsconsistentandc lear...figurepayoutswithin15days...countingongettingmoneyandtheneitherhavingtowaitmakesithardtoplanabudgetandwe,thepoorestpeople,needtoknowourmonthlybudgetsasquicklyifnotmorequicklythanregularfolks,becausewehavetoknowexactlywherewe'l lneedtospenteachpennyfromfirsttolast...i fweneedtopayourrent,haveenoughfood,butlastmonthwewe'reabletopayforahaircut,too,ifourmonthlyincomechanges2monthslaterbecauseofwhatwedidlastmonth,wehavetoknowNOTtpoplanongettingthathaircut...ANDthereisNOMONEYtoSAVE...andwhenwedosavemoney,itiscountedagainstusTWICEwhenitcomestofiguringoutourrents...nothingisfairinl i fe,buthowwouldyoul ikeit,i fyourincomefigureddoublebecauseyourlandlordsawsomeofitassavingsandheaddedTHATtoyourincomeAGAIN?????

12/6/20139:33AM

16 GetridofSpendDowns/CostofCare.Itisbarriertotreatment. 12/6/20139:29AM

17 Casemanagersdonotoftencommunicate 12/6/20139:28AM

18 NHlegislatorsarenotawareofthesufferingtheyinducebynottaxingcapitalgains. 12/6/20139:03AM

19 Threreisyoolongawaitformanypeoplewhoneedsservicesatthetimeofdishcargeforasafesetting.

12/6/20138:59AM

20 Asaprofessionalwhoworkswithconsumerstryingtoaccesslongtermcareservices,Ifrequentlyhearcommentsthatitisconfusing,familiesdon'tknowwhotocall,andspecificallywithCFIittakestoomuchtimetoaccessservicesoftencausingthenursinghomeplacementthefamilydidnotwishtooccurbecausesupportswerenotavailablefor6-8months.

12/6/20138:50AM

21 Notatthistime. 12/6/20137:59AM

22 Help!Help! 12/6/20137:58AM

23 directsupportstaffaretheKEYtoprovisionofqualityservicesandyetgettheleastpayandbenefitsofanyoneintheservicedeliverysystem...theyalsogetnexttonotrainingtodotheirjobs.Howcould/wouldasystemworkgiventhesebasicfacts?

12/6/20137:40AM

24 Again,myknowledgeisnotcurrent. 12/6/20137:33AM

25 ThepovertylevelneededisjusthighenoughsothatIonlyqualifyforthespenddownprogramandwiththemoneythatIdomake,itmakesitveryhardtomakeendsmeet.

12/6/20136:42AM

26 Itisnotflexibleenough. 12/5/201311:01PM

27 Thespenddownsystem 12/5/201310:35PM

28 Itissti l l amedicalmodelandismovingtowardsdatatodefinequalityofLife. 12/5/201310:15PM

29 Whenthereisaproblemthesystemisdifficulttonavigateandsometimespeopleoverthephonegiveyouincorrectinformationwhichcanthenleadtomoreproblems.

12/5/20139:31PM

30 I'vesaidallthatneedssayingintheaforementionedquestions. 12/5/20139:24PM

31 No 12/5/20138:46PM

32 Sometimes,itfeelsl ikeourfamilymemberis'kicked'outashehasmissedadeadline.Iunderstanddeadlinesareimportant.Butthereisalwaysthebalanceasafamilymember,toletthem'doitthemselves'fearingitwil l bedonewrong,simplytotrytopreservedignity.Withmentali l lness,whydon'tyouknowitisthebrainthatisdamaged,andhaveabitofleeway?

12/5/20138:30PM


46/155

33 Minimalservices.Someonewithamentali l lnessoftendoesn'thavethestrengthorunderstandingtomaneuverthroughourcomplexsystem.Asitis,mentali l lnessisstigmatizedinoursociety.Ourownstate'shealthcaresystemshouldn'tfollowsuit,bytreatingc itizenswithmentali l lnesswithlessdignitythanthosewithaphysicalhealthailment.

12/5/20138:16PM

34 LongwaitsForrestapproval.Poorcommunicationforthoseofuswhoneedanswers. 12/5/20137:55PM

35 Moreinformationisrequired. 12/5/20137:33PM

36 Inadequatefundingforservices.CMHCsprovideNHMedicaidLongTermCareServicesyetwerelumpedinwithacutecareMedicaidservicesinstep1ofMCMimplementation.

12/5/20137:06PM

37 Staffmayspendtoomuchtimetryingtokeepeligiblepeoplefromgettingservices.Itcreatesathreateningratherthansupportiveenvironment.

12/5/20137:06PM

38 IamcollectingmySSDI,buthavetowait2yearsforMedicareandamnoteligibleforMedicaid,so2yearswithoutpropermedicalattention,aretheyhopingIdieinthemeantime?

12/5/20136:35PM

39 Programcanbecutoffsuddenlywithoutpriorwarning.Severaltimesmydaughtersbenefitshavebeenstopped,onlytobereinstatedafterprovidinginformationasecondorthirdtime.

12/5/20136:25PM

40 Reimbursementistoolowtoattractquality,experiencedmentalhealthprofessionalstothestate. 12/5/20136:15PM

41 Itrequirestheassistanceofsomeoneveryfunctionalandknowledgabletonavigateit;Iworryaboutthosewhohaven'tfamilymemberstoadvocateforandassistthem;itissobarebonesthatthere'snocapacitytospendextradollarsthatmightsavemoneyinthelongterm.Whilevigilancetoprotectagainstabuseisneeded,itcantranslateintoasenseofpersistentdistrustofthoseinthesystem.AsifanyoneonmedicaidistryingtoripoffthesystemwhereinsteadI'dl iketoseeacompassionateattitudethatsayswemustdowhatwecanforthosewhocan'tmanageforthemselves.IdofindthepeopleworkingforDHHSinNHtobegenerallykindandcaring.

12/5/20136:14PM

42 No,itworkswellforme. 12/5/20136:14PM

43 Mysonl ivesonhisownandneedsmoreservicesbuthisyearlybudgethasn'tchangedsinceheturned21.Itwouldbenicetohaveperiodic"needs"reviews.Sincehe'sonhisownIpayformuchofwhatheneedstobesuccessful.WhathappenswhenIgo?

12/5/20135:16PM

44 no 12/5/20132:38PM

45 Itdoesntcoverdentalforadults.Informationandtransitionservicesespeciallyarelackinginsupportanddirectionforcaregiver/parent/guardian.

12/5/20131:41PM

46 Becauseit'slacksfundedinCommunity-BacesServicesMedicaidfundslessinCommunity-BaseServices.Medicaidfundsmoreforpeoplewithdisabil i tieswholivinginStateRun,PrivateRun,nursinghome.Medicaidgivesveryl i ttletoCommunity-BaseServices

12/5/20131:07PM

47 It'stoohardtogetgoodmentalhealthservices.Whatcanbeaccessedisbarelyadequate. 12/5/201312:42PM

48 Thecurrentapprovalandcasemanagmentsystemthroughtheareaagencyservicecoordinatorsworkswell,servicecoordinatorsactuallyknowthepersontheyarerepresenting,unlikeotherstateswherepeoplemanagingwaiverservicesdonot.

12/5/201312:01PM

49 Youshouldn'thavetol iveinpovertybeforeyoucanqualifyforservices. 12/5/201310:17AM

50 Turnoverofstaffingisdifficultforeveryoneinvolved 12/5/20139:33AM

51 Itisvitalthatwecontinuetomanagethestaffforourfamilymembers. 12/5/20139:17AM

52 Thecurrentsystemworksjustfine...let'sleaveitthewayitis. 12/4/201310:12PM

53 Thequalityofeyeglassesmakesthembreakeasy.Myraflexframescanbechewed,buttheydonotbreakandsoabetterqualitymetalframeandmyraflexframesshouldbeabletobereplacedandrepairedwhenneeded.

12/4/20139:12PM

54 no 12/4/20139:07PM

55 Itisbeingheldhostagebypolitc iansthatonlylookat"thebottomline"insteadofthehumansideofcare.

12/4/20138:10PM

56 IfeelthereimbursementrateforElderlyLongTermCareServicesinnursinghomesisinadiquatetoprovidepropercare.Thehomescannotaffordthelevelofstaffingtheyneedtoevengivemorethanoneortwobathspermointh.Theaveragepersontakesabathorshowerdaily

12/4/20132:58PM

57 doesnotcoverdental 12/4/20132:06PM


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58 Thewaitl istfortheWaiverFundinghasputmanycompromisedindividualsinunsafec ircumstanceswheretheirmedicalneedsarenotbeingmetwhiletheyawaitfundingapproval.

12/4/20132:01PM

59 TransportationservicescontinuestobealargeproblembecauseitisnotalwayscoveredbyMedicaidorisnotavailable.Also,poorcoverageinareasofdentalandeyeandhearingservicesandcostsforassistivedevices.

12/4/201311:50AM

60 no 12/4/201311:29AM

61 BeingonaWaitingList!!!!!! 12/4/201310:23AM

62 ItwouldbeveryhelpfulifthisMedicaidwouldcoverdentalandperidontalexpensesforolderc lients.Ourdaughteris54andwepay$204.00forherdentistand$240.00forherperidontal.Ihadtocutdowntoonceayearforthedentistandperidontistinsteadofeverysixmonthsbecauseitwastooexpensiveforus.Weareretiredandl iveonafixedincome.Ithinkeveryoneshouldbeencouragedtohavegooddentalcare.

12/4/20139:39AM

63 Seecommentsprovidedonotherquestions. 12/4/20139:38AM

64 no-Thankyouforthismuchneededservice!! 12/4/20139:32AM

65 Itisnotwellmanaged. 12/4/20139:14AM

66 Pleasekeepfundingfortheseprograms. 12/4/20138:41AM

67 Needforlongtermplanningbyage12notwhenpersonisreadytograduatefromughschool. 12/4/20138:39AM

68 Iappreciatesomuchthesupportmysoniscurrentlygetting,thankyou!,! 12/4/20137:09AM

69 no 12/3/201310:34PM

70 Thefocusonindividualsl ivingbythemselvesand"independently"isantiquatedandwascreatedbypeoplewhohavenoideawhatadultswithDDandnowASDwantandneedtobehappyandsuccessful.Thereshouldbeac learfocusongoingforwardtocreatecooperativesituationsthatcombinepeoplewhofitwelltogetherandwhohavedifferentskil lsthatcanbalanceandcomplimentoneanother.(Thiswil lbeeasierforpeoplewithautism.)Thebudgetsforindividualsthatownhomesorcondosandneed24/7careisnotonlyridiculous,butiskeepingothersfromaccessingwhattheyneed.Thestateneedstolookatwhatissuccessfulinotherstatesandworkwithfamiliestocreatemorelogicalandreasonablesolutions...thisisthefirstgenerationoffamilieswhohavehadtheirDD/ASDpersonl iveWITHthem-attendpublic schoolsandthushavecreatedanetworkofconnectioninthecommunitythatshouldbeleveragedinsustainingourlovedones.Nooneknowsthembetterorcandecidewhattheyneedtobesuccessfulthantheprimarycaregiversfortheirentirel ives.

12/3/20138:34PM

71 Idon'tl ikethefactthatpeoplewhohavenothingcan'tbepenalizedfinanciallyforservicespaidforbytheMedicaidprogrambutpeoplewhohaveworkedalloftheirl ivesbutacquireabraininjuryhastoletthestateputal ienontheirhousetotryandrecoupmoniesthatwerespentoncaregiverscomingintothehometocareforthebraininjuredpersonwhilethespouseworksafulltimejob

12/3/20138:29PM

72 No 12/3/20138:12PM

73 No 12/3/20135:10PM

74 No 12/3/20134:50PM

75 no 12/3/20134:22PM

76 Notyet. 12/3/20134:09PM

77 Thereisn'tenoughemphasisandvalueplaceddoingtheworkofaDSPforDDindividualsintheschools.Itshouldbepresentedasanoptionforthoseinterestedinnursingorsocialwork.ThereisabigdifferenceinworkingwithDDfolksandchangingdiapersatanursinghome.Itcanbealotmorefunandrewarding,andshouldbepresentedthatwaytoencouragekidswhocan'tordon'twanttomakeitasnurses.

12/3/20133:52PM

78 Someofthepeoplehavesuchlargec lientcaseloads(Plusco)thattheydonotseeusformonthsatatime.

12/3/20133:30PM

79 Thedelayinreceivingfundingsupportforthosewithseveredisabil itiestransitioningfromschoolbaseprogramtoadultservices.Thereshouldbeabetterwaytobridgethesupportssothattheexpertiseandtrainingoftheschoolbasedstaffcanextendtotheadultserviceprogramandstaff.Manyschooldistric tswil lnotbackinservicesfromanadultserviceproviderasitisanextracostandtheyoffertransitionservicesintheirhighschoolprogramswhichtheyfellaresuffic ienttomeetIEPtransitiongoals.

12/3/20132:47PM


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80 Nothing.It'soneofthebestinthenation.Leaveitalone!Wedon'twanttogobacktotheLaconiaStateSchoolDays.

12/3/20131:50PM

81 Itisdifficulttofindaplaceformysistertogethearingtests/hearingaids.AllbutonelocationinManchestersaystheywon'ttakeanyoneonMedicare/Medicaidastheydon'tgetreimbursedenough.

12/3/201312:43PM

82 ConcernsaboutthequalityandcompetenceofthestaffatGateways.Concernsaboutthequalityandcompetenceofthe"FamilyManagedEmployees"selectedbyGateways.

12/3/201312:21PM

83 Ifeelthattheprovidersthatareavailabletomeareunqualifiedandnotknowledgableinthetreatmentofautism.

12/3/201311:48AM

84 ClientProvidersneedbetterpayandbenefitstokeepthememployed.Alsoifsituationschangeandmoreneedsareneededasthesefolksage,Iunderstandthatonceyourbudgetisset,itcannotbechanged.Iwouldl iketoseechangesallowedwhennecessaryforfolksassituationschangeinthehouseholds.Wesavethestatemill ionsofdollarstakingcareofourownathomeyetthatisnottakenintoconsideration.

12/3/201311:44AM

85 NotallofourserviceprovidersacceptNHMedicaid,accordingtotheprovidersitistoofrustatingforthemandtheydidnotgetpaidinatimelymanner.Theyalsodonotcoversomenecessarymedicaltestingcost.Ijustreceivedalargebil l foranEEGthatmysonneededbecausetheythoughthewashavingseisurescausedfromhismedication.MyprivateinsurancepaidsomeandMedicaidrefusedtopayanything.

12/3/201311:00AM

86 AlmosteverytimeIpickupmyson'sprescription,thepharmacytellsmethatthemedicationisnotcoveredwheninfact,itiscovered.Ican'tsendmysontopickitupbecausethepharmacywil lchargeover$200permonthforsomethingthatshouldbenocharge.Theemployeesatthestateandlocallevelareuncaringand,attimes,nasty.ThesearepeopleIhavespokenwithonthephone.Theemployeeswhoareatthelocallevelthatyouseeatthefrontdeskcouldn'tbenicerandmorehelpful.

12/3/201310:41AM

87 Homecareprovidersanddirectsupportprofessionalsdonotearnenoughmoneyandgoforyearswithoutpayincreases.Obviously,thisaffectsthequalityofservicesbeingprovidedtorec ipients.

12/3/201310:37AM

88 Iworryaboutwhenwe(I)amnotaroundastohowhewil lmanage... 12/3/20139:23AM

89 THEMEDICAIDRATESHAVEN'TCHANGEINMANYYEARS,THUSIMPEDINGOURABILITYTOCOMPENSATECAREGIVERAPPROPRIATELY.

12/3/20139:04AM

90 Lackofcommunication/knowledgesharingbetweenDHHSdeparmentsprovidingservicestothedisabledindividual

12/3/20138:55AM

91 Themedication/havingscriptsfi l ledandbeingapprovedhasbeendifficult 12/3/20138:49AM

92 Everyoneatthestatehasadifferentansweranddoesn'taddressthefamilyneedsandchanges,onlytheMedicaidc lient/lovedone.

12/3/20138:21AM

93 ItisextremelydifficulttogetsomeonetheMHcareneeded,evenwithguardianshipstatus. 12/2/201310:57PM

94 TheonlythingIdon'tl ikeistheresponsetimetothebil l ingsforhisservices.Ihavehadproviderswhodroppedtakingtheinsurancebecausetheywerenotpaidfastenough.ButIhavenocomplaintsatallaboutmyson'sinsurance.

12/2/20137:58PM

95 Paperwork 12/2/20136:17PM

96 Thesystemlooksgoodonpaperbutthelackoffindingdoesnotallowittohelpallthatneedhelp. 12/2/20134:10PM

97 Doesn'tproviderespiteservicesorsubstanceabuseservices 12/2/20131:54PM

98 n/a 12/2/201311:56AM

99 thespenddownamountistohighforme. 12/2/201311:02AM

100 ProcessismuchtoolongtogetonCFIprogram.Noreasonableexplanationastowhyittakessolong(months).NoresponsesfromOLTCwheninquiriesaremade.

12/2/201310:33AM

101 WearecurrentlyintheIHSprogramandnotsurewhatwil lhappenwhenmysonturns21.Wouldbeacomfortknowingthathewouldbeassuredqualityservicesatthistime.

12/2/20139:02AM

102 budgetcutsthattakeawayfromtheservicesthatwehave. 12/1/201310:12PM

103 thepersonwhoconductedtheinitialinterviewwasinsuchahurrysheputdownincorrectinformation.ifIhadnotcorrectedthemisinformationmychildwouldhavebeendeniedservices.

11/30/20131:16PM

104 IhavethreechildrenwithAutism,ages17,19and22.Theycouldusemoredirectcareservices,butthat'safundingorbudgetproblem.Themoneysimplyisn'tthere.Igetthat.Theyagenciesdothebestwithwhattheyhave.Iknowthis!

11/29/20136:10PM


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105 Itdoesn'tprepareparentforwhentheyaregone.YouhavetoworkreallyhardandnottakeNoforananswerwhenyouneedsomethingforyourlovedone.Youmustlearntobeanadvocatewhohasbroadshoulders.

11/29/20136:00PM

106 Thereisafearofwhatwil lhappentohimwhenIcannolongercareforhimphysicallyandnolongtermplanavailable.Andinourareanorealchoicesbetweeninhomecareandgrouphomesifnecessary.

11/29/20131:26PM

107 Onceagain,Ibelievethatfor-profitmanagementisnotethicallyorfinanciallyappropriate.IurgethatDDservicesbeexemptedformNHMedicaidLongTermCare,andthatthepresentsystembecontinued.

11/29/201311:15AM

108 Itdoesnotprovidedentalcarewhichmysisterisingreatneedof.Shehasextremelypoororalcareatthistime.

11/28/20138:23PM

109 No,infactitconcernsmethatifIhavetodealwithnewprovidersoutsideofmylocalcommunitythatmyfamilymember'sQUALITYofservicesmaybejeopardized.

11/28/20133:21PM

110 I 11/27/201310:48PM

111 Notreally-justthelackofsomesortofaCOLA-keepingourmentorsisVERYimportantandbecomingmoredifficult.

11/27/20136:00PM

112 No. 11/27/201311:43AM

113 No 11/27/201311:14AM

114 Thereisoftendisparityacrossthestateandmuchofwhatpeoplereceiveforservicesdependsontheabil ityoftheguardianorfamilymembertoadvocateforneeds.However,Iamnotconvincedthatanyothersystemwouldbedifferent.Muchofitishumannatureandwearesti l l al lhumans...

11/26/201310:48AM

115 Waitl istnotalotofinformationonhowtoaccessservicesIusuallyhearthroughthegrapevine 11/26/201310:26AM

116 Ittooktoolongtoreceiveit. 11/26/20138:05AM

117 Mostofmycomplaintl ieswiththeareaagency(communityBridges)andthelackofunderstandingofthecurrentbestpracticeapproachtoautismtreatmentinadditiontotheunder-qualifiedstaffing

11/26/20136:30AM

118 toomuchpaperwork 11/25/20133:30PM

119 Notenoughoptionsforresidentialservices.Adultfostercareisnotappropriateformanyandthusparentsarelefttodealwithverychallengingdisabledadultchildrenontheirown.Groupvil lagesandcommunitiesshouldbecreated.

11/25/20132:56PM

120 Idon'tl ikedealingwiththeareaagency 11/25/20131:58PM

121 Familiesdonotgetthesameinformationfromareaagencytoareaagency-thereshouldbeONEplacethatgivesALLtheinformationandthatwouldallowfamiliestoconnectandworktogethertocreatewhatwouldbebestfortheirperson.

11/25/20131:42PM

122 NA 11/25/201312:38PM

123 Idon'tknowofanyonewhospeakswellofBEASAdultProtectiveServices;inc ludingpolice,EMS,socialworkers,friends,colleagues,coworkers,lawyers,etc.

11/25/201311:39AM

124 Sameasprevious….dealingwiththeareaagentisachallengeatbestandanightmareatworst.Idon'tknowwhymoneyhastogotoamiddlemanwhenitcouldbeeasilymanagedbytherecipientortheguardian.

11/25/201310:42AM

125 Let'sbemorethoughtful&delayimplementation. 11/25/20139:05AM

126 Morehousingoptions 11/24/20137:02PM

127 FUNDTHEWAITLIST!!!GovernorHassansignedthebil l ,butthebackdoorbudgetcutsarecrippling 11/24/20136:46PM

128 Thisisavitalprogramtokeepchildrenoutoffac il i tiesandathome.Kidsathomecostthestatelessthanifinafac il i ty.WithouttheblocktimenursesandLNAs,thesefamilieswil lnotbeabletoachievethis.

11/24/20135:21PM

129 Privateagenciesaresoakinguptaxpayerdollarsthatcouldbebettermanagedbythestategovernment.

11/24/20134:11PM

130 Ididn'tevenknowitexisted,orhowtogetaccesstoit.ThisisactuallythefirstI'veheardofit. 11/24/20131:51PM


50/155

131 NotmanydentalprovidersinNHacceptit.Ipaidalotofmoneyformysonsteethwhichwerecominginbehindothersandhecan'tsimplywigglethemoutorwouldn'tletussoIhadtohavethemextractedandneededtopayinfull.Also,heneededtobeputunderanesthesiawhichwasanotherexpensebecausehewasarisktohimselfandthedentalteambecauseheswingshisarmsandtriestopushthemaskoff

11/24/201310:01AM

132 Offerahigherreimbursementsothatmoremedicalphysic iansandfac il i tieswil lacceptNHMedicaid 11/23/201310:23PM

133 Toomanyhandsonthepie.AreaAgencygetsacutfortheiroverhead,thenEasterSealstakestheirpiece,andthenyourvendorsuchaspluscompanygetstheirpiece.Ifaparentiswil l ingtodoCDS,thenGateways/Areaagencyshouldnotbegettingtwoseparatel ineitemsoutofthebudgettoadministerwritingonecheckpermonth?THismeanslessandlessmoneyforthec lientwhoistheonewhoneedsthefundsandtheoneintendedtogetalltheservicestheyneed.

11/23/20139:47PM

134 Therulesthatpreventthedisabledfromsavingmoney.Iftheyshouldevergetawindfallwecan'tsaveitforthemtouseinfuture.Thatmeansthemoneygetsspentonfrivolities(perhapsnice&functionalbutnotnecessaryatthetime)andwhenlaterthemoneycouldhavebeenusedtorepairacar,payforfoodorgas,thereisnone.Soitcomesoutoftherestofthefamilywhoarealsostrugglingtomakeendsmeet.

11/23/201310:52AM

135 IwanttouseFCtocommunicatebutthereisnotenoughpeopletodothatinmyprogram 11/23/20138:38AM

136 DentalandABAservicearenotcovered.Mysonl ikesomanyothershassensoryissuesandbrushinghisteethisdifficultforhim.Currentlywecarryhimonourprivatedentalplan,howeverthatwil lchangewhenheturns27andcannolongerbeonmyplan.Currentlyheseesthedentist4timesayearandfor2ofthosevisitswepayoutofpocket.DentalissueleadtoalltypesofMedicalissues,itdoesnotmakesenseformedicaidtostoppayingforDentalatage19.TheotherissueIhaveMHservices.TRYtofindaalongtermproviderforsomeonewithdevelopmentaldisabil i ty.MysonsuffersfromanxietyandfindingaMHproviderswastimecomsumingandunsuccessful.Withtheproviderdidnottakemyprimarilyinsurance,didnottakeMedicaid,didnotworkwiththeDDpopulationandonlytookonshort-termc lients.ForsomeonelivingwithaDDMHservicesarelong-term.

11/23/20138:01AM

137 Hb528prohibitsincomefromchildsupportforapersonover21whohasadisabil ity.Livingatpovertylevelisnotgood.FamilyCareprovidersaresavingthestatealotofmoneyhowcantheygetmoresupports.Ablefamiliesshouldsupporttheirfamilymemberswhenable.Whywouldthestatewantpersonswithdisabil i tiesonstateprogramsandabsentparentsnotheldresponsibleforfinancialassistancewhenableandforphysicalassistance

11/23/20137:55AM

138 I'mworriedthatmysonwil lageoutandnotbecaredfor. 11/23/20137:41AM

139 Takestoolong. 11/23/20136:28AM

140 No. 11/23/201312:31AM

141 Iappreciateanyhelpformyfamilymember.However,whenshehasmoneyinherfundIdon'tl ikethatitcan'tbeusedfordentalworkorvisioncare.

11/22/201310:34PM

142 Familiesshouldhavetheoptionofchoosingtheirownagencyinsteadofanareaagencyforabudgethome.

11/22/201310:10PM

143 SometimesIfeell ikepeopleget"burntout"... 11/22/201310:00PM

144 no 11/22/20138:59PM

145 Theconstantneedtore-authorizehoursisdraining.Ifnochangeinstatushasoccurred,whyisitnecessarytocontinuallygooverthesameinformationevery90days?

11/22/20135:26PM

146 Allinalli t'snotabadsystem.Sometimesonecaseworkerwil lsaysomethingandanothersayssomethingelse.Theyallshouldbeonthesamepageandnotbeafraidtosay"I'mnotsurebutletmefindoutandI'l l berightbackwithyou".

11/22/20134:01PM

147 unknown 11/22/20133:39PM

148 Toomuchemphasisonemploymentforpeoplewhoreallydon'thavetheattentionspanandskil lstobeemployed.Tool ittlediversificationofservicevenues.Onemodeldoesnotworkforeveryone!

11/22/20133:35PM

149 Idon'tl iketheideathatthecurrentsystemwil lchange.Theareaagencysystemalreadyprovidesmanagedcareinacost-effectivemanner.

11/22/20133:35PM

150 Notenoughrespiteavailable.Itakecareofmydisabledsisterbymyself.WehavenofamilytohelpoutandIwork50hoursaweekandtakecareofherinaddition.Idon'thaveanywherenearenoughrespite.

11/22/20133:25PM

151 no 11/22/20132:54PM


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152 Whenwefirstreceivedourinhomesupportwaiverwecouldusemostofthebudgettocovertherapiesthatwereextremelybenefic ialtoourson.Nowwiththe$1200.00l imitwehavehadtopullhimoutofsensory,social,hypnotherapyandmusictherapy.Mostofhisbudgetisneverusedbecausetherejustisn'tthestaffavailabletodorespite.Ialsodon'tunderstandwhysanitaryproductsl ikeovernightbladdercontrolunderwearthatmysonneedsbecauseofcerebralpalsyaren'tcovered.

11/22/20132:43PM

153 IhavebeentryingtogetmydaughteranewMedicaidcardformorethan2yearsanditnevercomesnomatterhowmanytimesIhaverequested!

11/22/20132:38PM

154 assistanceinpurchasinghandicapvanwithwheelchairl i ft.Evenifi twasausedone.helpinthisareawouldgreatlybeappreciated.

11/22/20132:19PM

155 no 11/22/20132:12PM

156 Thepaperwork...yearlyrequalifying.ThepoorcommunicationfromtheMedicaidoffice.HavinganAreaAgencystructurethatIknowistheretohelpusifweneedit.Ihaveseenthemjumpintoactionandtakeindividualstheyserveintotheirhomeswhentherewasanextendedpoweroutage.Itisapersonalconnectionandrightnowthecomfortis...i fmyhusbandandIshouldhaveanaccidentandnosurvivetheAreaAgencywouldstepinrightawaytobesureourdaughterissafe.Iwouldhatetoseethisstructurebrokendown.Ihavesceenfirsthandthebenefitofconsumerdirectedservicesandwouldliketoseethiscarriedoverforotherpopulationsinneedoflongtermsupports.IhavesceenthisworkforsomeoneontheCFIwaiverandtheirqualityofl i feimprovedoncetheycouldhaveaflexible(consolidatedbudget)andselecttheindividualstoworkwiththemandalsousethefundingtopurchaseproductsthatworkforthemandcostlessthantherequiredMedicaidproduct.Idon'tl ikewhenrulesareestablishedbasedondistrustratherthansettingguidelinesfromatrustperspective.Itdoesnotprovidepreventativecoveragefordentalcareandhasl imitedMentalHealthservices.

11/22/20132:07PM

157 Supportandeducatefamiliesrightfromthebeginningandhelpthemtodothebestjobwiththeirfamilymemberaspossiblewouldsavelotsofheartacheandlotsmoremoney.Helpingthemwithwhattheyneedbuildsabetterfoundationforsuccess,ratherthanitbeingsuchahardscrabblesystem.Youdon'tknowwhatyoudon'tknowandwhennoonetellsyouornoonecantellyou,it'sveryfrustrating.

11/22/20132:02PM

158 Thewaitl istforadditionalneededservices. 11/22/20131:49PM

159 Itwouldbemuchbetterifthemoneyfollowedthepersonnomatterwhattheagesothatpeoplewil lhaverealchoices.Makingfamiliesacceptservicestheydon'tneedorwantisawasteofmoneythatthestatedoesn'thave.Peopleshouldbeabletochooseanyapprovedvendoragencyandnothavetoworkwiththeareaagenciesiftheydon'twantto.

11/22/20131:44PM

160 Wearebackonthewaitl ist 11/22/20131:37PM

161 nothing-I'mveryhappy 11/22/20131:30PM

162 Lackofconsistencyacrossthestatedrivesmecrazy!Qualityassuranceisslippingbecausestaffatthestatelevelhavebeendrasticallycut.Thesystemrelysmoreandmoreonthegoodwil l(andmoney)offamilymembers.Whyisthereanassumptionthatmysonwil ll ivewithmeforever?Ifhedoes,whycan'ttheStateoffermesomethinginreturn--tuitionbreakatstateuniversityformyotherkids?Lowerrealestatetaxes?Something!

11/22/20131:14PM

163 MydaughterreceivesLNAservicesathomeafterschool.Unfortunately,duetothewaytheStateofNHinterpretsthefederalguidelines,theLNAcannotaccompanymydaughterandmyselftodoctor'sappointments,dance,gymnasticsc lassorshopping.Mydaughterrequires1:1assistanceduetoherlackoffine,grossmotorskil lsandspeech.Itisimperativethatshehaveanaidetoaccompanyherforassistance.Sheisconfinedtothefourwallsofherhomeafterschoolandnotabletopartic ipateinafterschoolactivitiesasherpeersdo.IfItakehermyself(whichIhavedone),theaidesti l l can'tgowithmeandtheaidethenlosesadayofpay,andImaylosemyslottohavetheservicescontinue,

11/22/201312:23PM

164 delayinapprovalforsnf,ltc throughstatenurseistoolongandmeansthatptwhounderotherinswouldbeabletoaccessappropriatecare,insteadarekeptatthehospitalfortoolong,feelthattheyareforgottenandareplacedatincreasedriskforinfectionduetoincreasedexposuretoacutecarefacil i ties.

11/22/201312:14PM

165 No! 11/22/201311:48AM

166 Thecurrentsystemdoesnotputenoughemphasisondirectsupportsintermsofpay,benefitsoracomprehensivetrainingopportunity(andongoing).Allservicesleadtowhoisgoingtoperformthemandleadershipinthisstatedoesnotfocustheirtimeandmoneyinmakingsurethedirectworkforceispreparedtodeliverqualityservices.IfthiswasmoreofaconcentrationofallserviceagencyprovidersIbelievetheoutcomesforthepeoplereceivingserviceswouldhavebetterhealth,safetyandoverallqualityofl i fe.Andmorecosteffectiveandnaturalcommunityresourceswouldbeuti l izedthereforeloweringsomecosts.Directsupportworkersneedalotofattentionandtheycanmakeorbreakanysystem.

11/22/201311:18AM


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167 Thewaythefundingtricklesdown..tomuchfundinggoesintooverhead 11/22/201311:12AM

168 no 11/22/201310:56AM

169 No 11/22/201310:52AM

170 It'stohardtouse 11/22/201310:24AM

171 Itfeelsfragileandchangeable.Familiesneedtobecertainsupportswil lbethereforthelongterm.Parentswil lnotalwaysbehereandpropersupports&servicesarealwaysaconcern

11/22/201310:21AM

172 thereisnoprogramthathelpswithfindingjobsinarealistic way-comparedtootherjob-seekers,ourpopulationisnotgoingtobechosenforajob

11/22/201310:18AM

173 Inadequatelevelofprogramfunding,inadequatepayforproviders.ThereshouldbenooraVERYshortwaitl ist.Fearfulofmyson'sgoodlifewhenIamgone...

11/22/201310:16AM

174 Thisissuchahighlyregulatedprogram,andIcanunderstandtheneedforit,butitwouldbewonderfulifsomeoftheredtapeandpaperworkcouldbedropped.Perhapsitstimetoreviewtheprocessandremoveoutdatedpolic iesthatnolongermakesense.

11/22/201310:00AM

175 Idon'tknowwhyyouhavetohavethesamepaperworkfi l ledoutyourearlyiftherehasbeennochangesIwouldsaytakeandmakechangestothepaperworkthatwaspreviouslyhandedtoyoul ikesomeofthedoctorsofficesdo.Youcreatesomuchmorepaperworkforyourself

11/22/20139:46AM

176 Casemanangmentservicestotallysuck. 11/22/20139:42AM

177 Reapplicationprocessispaperworkforl i ttlepurpose.TheissuesMayahaswil lnotresolveinherlifetime.WhydoIhavetokeepreapplying?Alsothetotalamountofpaperwork--respite,reapplication,transportforms,etc--taketimeIdon'thave.Thereisnoeasy,onlinewaytodoit.TherehavebeentimeswhenthepaperworkburdenhasmeantthatImissedoutonservicethatIwasentitledfor.Ijustcouldn'tgettheapplications,etc,outontime.

11/22/20139:37AM


53/155

72.13% 440

19.67% 120

8.20% 50

Q13Haveyou,oryourfamilymember,everhadexperiencewithateamof

serviceprovidersorprofessionalswhomeetonaregularbasistoreviewyour(oryourfamilymember's)progressandhelp

setnewgoals?Answered:610 Skipped:282

Total 610

Yes

No

Notsure

0% 20% 40% 60% 80% 100%


Yes

No

Notsure


54/155

54.97% 238

27.25% 118

5.08% 22

12.70% 55

Q14Whatstatementcomesclosesttoyourgeneralexperiencewiththeseteamsof

serviceproviders?Answered:433 Skipped:459

Total 433

# Youarewelcometocommentifyouwouldlike Date

1 Thishasalwaysbeenateameffortwhereeveryonesopinionsandknowledgearerespected. 12/9/20137:36PM

2 Itseemsdifficulttogeteveryonetogetherandwhenithappens,itisdifficulttoreachconsensus 12/9/20134:51PM

3 Waytoooftenourcaseworkersareswitchedfromthecasestheyareon.Haveyouanyideawhatit'sl iketohavetofi l l inanewcaseworker?Thentherearethetimeswhenwegetthe"new"onesthatjustdon'tknowwhatthey'redoing.That'sextremelyfrustrating.

12/8/20135:39PM

4 TheyhelpmemeetthegoalsIwantformyself.Theydon'ttellmewhatIcanandcannotdo.Theytreatmelikeanadult.

12/8/201311:05AM

5 Alocalteamofprofessionalswhoknowtheresourcesavailableinourarea,knowmydaughterandthecultureofourfamilyisextremelyimportantindevelopingandimplementingservicestobestmeetherneeds.

12/6/201310:56PM

6 Ithasbeenabattletoensuretheservicesarecarriedoutforthelongtermversustheimmediateacuteperiodofamonth.Ifmysondidnothisfamilytoadvocateforhim,Itrulyfeelthathewouldfallthroughthecracks.

12/6/20133:50PM

Veryhelpfulindevelopingaprogram...

Somewhathelpfulin

developing...

Notveryhelpfulin

developing...

It'saconstantbattleto...

0% 20% 40% 60% 80% 100%


Veryhelpfulindevelopingaprogramofservicesandsupportstomeetmy(our)needs

Somewhathelpfulindevelopingaprogramofservicesandsupportstomeetmy(our)needs

Notveryhelpfulindevelopingaprogramofservicesandsupportstomeetmy(our)needs

It'saconstantbattletoadvocatefortheservicesandsupportsI(we)need


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7 Itis99%family-paideventhoughIhaveinsuranceandwastolditwouldbecovered.Ourfamilymemberhasreceivedresidentialtreatment,isnowinout-patienttreatment.HeisnowaworkingmemberofsocietywhocontinuetoreceivetreatmentfromanOutpatientteamthathelpshimmanagehissymptomsandcommunicatewithhisemployerabouthisi l lness.

12/6/20132:33PM

8 dontletyouknowwhentheyhavetomissanappointmennt 12/6/201312:50PM

9 Nomatterhowgoodtheteamandtheprograms/activitiessuggestedorarrangedfor,thepersonwithmentali l lnessisusuallyunabletoactuallydothethingsprovided.Newlydiscovered:thereisapartofthebrainthatcontrolswhetherthepersoncanperceivethethingstheythemselvesaredoing.

12/6/201312:15PM

10 MysonmeetswithamedscoordinatoratTheBedfordClinic (ManchesterMentalHealth)eachmonthandIhavepartic ipatedinthosemeetings.LeslieClokaydoesanexcellentjob,butmysonneedsmoreattentionandservicesthanMMHcanprovide,giventhefundingissuesandgrowingnumberstheymustserve.Fundingisgreatlyneeded!

12/6/201311:34AM

11 Feedbackfromfamilymembersisthatthegeneralexperienceisoverwhelmingandconfusing.Moresupportisneeded.

12/6/201311:24AM

12 ItisVERYfrustrating,sinceourchild'scounselorwil lnotspeakwithus.Werealizeshecan'tsayanythingaboutherpatientswithoutbeingreleasedtodoso,butwehavesomeinformationshecouldtakeintoaccountandwewouldappreciatebeingadvisedaboutwhatwecanbestdotobeahelp.Wearesupportingourchildandpayingallthedoctors'bil lsanditissuchamissingl inknottoallowourinput.

12/6/201310:41AM

13 Asamentalhealthc lientusingmylocalcountymentalhealthc linic ,gettingmyservicesmetisverydependentonwhomycasemanagerisandthatisconstantlychanging...theygetburntoutandarewill ingtochangejobsforbettermoneyorbecausetheygetburntout...youmustALWAYSconsidertheEXTRAconstantchangewementalhealthc lientsareunder...YOUMUST!!!

12/6/20139:36AM

14 ThemeetingsIamfamiliarwithareaCoreTeammeetingforyouthwithmentalhealthservices 12/6/20139:35AM

15 thedegreeofcoordinationandcommunicationamongthevariousprovidersisinconsistent 12/6/20139:33AM

16 Ihaveheardanyandalloftheabovedependingonwheretheaptientresidesandwhattheneedsare.someareunrealitic butmanyhavenoothersourceforsupport.

12/6/20139:00AM

17 Ibelievegettingallstakeholdersinvolvedandcommunicatingwitheachotherfortheinterestoftheindividualrequiringservicesisasolidapproachtoobtainingandmaintainingservicesneededorinsomecasediscontinuingservicesnotneeded.

12/6/20138:02AM

18 Essentialforbothhumanitarianandcostsavingservice."Essential"putsitmildly. 12/6/20137:35AM

19 CommunitymentalhealthSpecialeducationAndnowthecourts-it'sbeenandsti l l isaconstantbattle

12/5/201311:40PM

20 MySocialWorkerissohelpfulinbeingmyadvocateforme.Sheknowsthe"in'sandout's"ofthesystemandknowshowtogettheservicesIneed.

12/5/201310:38PM

21 Limitedchoiceinmedicalproviders. 12/5/201310:04PM

22 Ahappyorunhappyexperiencedependsagreatdealontheindividualserviceprovider/vendorManymoresuchspecializedvendorsareneeded,tocreatecompetition.StopassigningAreaAgencieswhoaregivenpowertomonopolize.StepuptoimplementthatwhichNHhashadapilotprogramfor,yearsago,stoptalking,butdothatwhichyou've"TALKEDABOUT"regardingindependentcasemanagerstokeepoversight.GivingINDEPENDENTCASEMANAGERSgreaterauthorityoverAgencieswil lmakethingsworkbetterandmoreeffectively.Mostcasemanagersaregreat,lesscostlythenmedicallytrainedandtheyworkhardtogetthemostservicespossibleoutoftheindividuals'fundings.SeparatethemformtheAA's,givethemauthorityandwe'l lgetabetter"Bang"outofthetaxdollarspend!!!!!

12/5/20139:50PM

23 Hasn'thappenedrecently,butwemetannuallyforthistypeofreviewearlyinmyson'si l lness. 12/5/20139:46PM

24 Wehadonecounselorwholied,inwritingaboutourfamilymember.Wedidn'tlearnaboutitunti lsheleftandhegotanewc linic ian.I'mtheguardian,Iwasnevershownthisinformation-whynot?Itisnowinhispermanentrecord.Thatshouldn'tbeallowedandthereshouldberecoursewhenitoccurs.

12/5/20138:32PM

25 Thesystemcreatestreatmentprovidersthatareoverloaded,overworked,underpaidandunderappreciated.Theyneedmoretoolstobetterservethispopulation.Needtolookatimprovingeffic iencies,reporting,bil l ingjustasastart.

12/5/20136:30PM

26 Mydaughterlackedmedicationmanagementservicesformostoflastyearbecausehercommunitymentalhealthcentercouldnotreplaceaprescriberwhohadleftforanotherjob.Sheendeduphavinganexacerbationrequiringa15dayhospitalizationandhasnotfullyrecoveredfromthatexperience7monthsago.

12/5/20136:17PM


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27 Pathwayshasbeenexcellent;lessimpressedwithWestCentral.WhilethereareexcellentpeopleatWestCentral,therearealsosomewhoarewoefullyuninformedandnotwelltrainedfortheirwork.Peopleseemburnedoutandnotcapableofhandlingtheirwork.

12/5/20136:15PM

28 Wehavehadafewteammeetings,butnotenough,andtherehasnotbeenverygoodfollow-throughafterthemeetings.

12/5/20135:52PM

29 Theteamiseffectiveindevelopingprograms,butthereisnofollow-upandoversight. 12/5/20131:12PM

30 Allseemtohaverecipientsbestinterestatheart 12/5/20139:33AM

31 OneSkyTransitionCoordinatorKarenTell ierwasal ifesaverandtherecipientwouldnotbewheresheisnowifi twerenotforKarenshardwork.

12/5/20135:20AM

32 Myareaagencywasabit"secretsociety"whenwefirststartedadultservicesbutoncewegotplacementintothegrouphometheyhavebeennothingbutwonderful.TheBureauofSpecialMedicalServiceswasoneofthebestresourcesweusedandwassadtoleavethemattheageof21years.

12/4/20139:27PM

33 Wearecurrentlyinschoolbutarestartingthetransitionperiodsoon. 12/4/20139:13PM

34 Ipartic ipatedinONEteammeetingbetween2007-2013andthatonlyhappenedbecauseIadvocatedandworkedveryhardforittohappen.

12/4/20137:45PM

35 HeidiJackmanwithOneSkyisfantastic ,sheissohelpfulwithcertainstateformsandgivingguidancewhenneeded.

12/4/20136:30PM

36 WegothroughAreaAgencyandtheytellyouonethingyougettheagreementandbudgetanditdoesnotlookanythingl ikewhatwasputcollectivelytogetherforstatereview.

12/4/20132:54PM

37 Ourteammeetsafewtimesayearandworkstogethertoidentifyandcoordinategoalsandobjectives.Themeetingsprovideanopportunityforquestionsandfutureconcerns.Theteamisknowledgeableintermsofmonetaryallocationandflexibleenoughtomakeprogramchangesasarenecessarytomeetourdaughter'schangingneeds.ThereisalwayssomeoneavailablefromLakesRegionCommunityServicestoanswerourquestions,inc ludingMedicaidissues.Mostimportantly,thepresentservicemodelismadeupofindividuals/professionalsinc loseproximitytoourdaughter/family,whounderstandherindividualcaseandarec loselyinvolvedwithit.Asaresult,themostcosteffectiveyetappropriatedecisionscanbemadetoaddressherneedsinatimelymanner.

12/4/20131:27PM

38 Theteam(albeitwithhigh-turnover)isverykindandunderstanding.Theyagreewithoursenseofurgencyandtheyexplainthingsinawaythatisunderstandable.Butthebottomlineis:we'resti l lWAITINGforservices.2.5yearsofwaiting.

12/4/201312:22PM

39 Thisvarieswithdifferenttowns,organizations,c lients...SomeCarePlanTeamsareexcellentandsomeareuseless.

12/4/201311:51AM

40 Thisonlybecamethecaseoncewehadtheopportunitytopartic ipateinaconsumerdirectedprogramwherewecouldchooseallofourproviders(areaagencyforfiscalservices,casemanagement,home/dayservices,etc).Beforeitwasamuchmorechallengingprocessanddidnotnecessarilymeetourneeds.

12/4/201311:51AM

41 Butoncethingsareputinplacenoonestickstothem. 12/4/201311:30AM

42 Theytry,butthereisinadequatefundingsowhatcantheydo? 12/4/201311:03AM

43 CaseManagersatCommunityCrossroadsareskil ledandknowledgeable,butitisnotfairtohavebeenontheWaitingListforadditionalservicesfor8monthsnow,eventhoughWaitingListfundingpassedinthebudgetinJulyandhavehadNOcommunicationfromCommunityCrossroadsastheIForWHENtheneedsofmydaughterontheWiaitingListforadd'lsupportsmightbeaddressed

12/4/201310:25AM

44 PrimarilythisoccurredduringtransitionfromHighSchool.Theoverallexperiencewaswonderfulinloweringthestressofwhatisotherwiseaveryscary,stressfulperiod.ThispartofthesystemshouldNOTbealteredsignificantly!

12/4/20139:39AM

45 Jessurinatesatnightandrefusedtogetc leanedupsherefusedherdayprogramsofarmsteadswasn'tgettingpaidforthosehours.WewereabletogeturgentfundingfrompathwaysareaagencythroughMedicaid.sheiscurrentlygoingthroughtheSTARSevalprocessandtherehavebeengreatimprovements.Wearemeetingfrequentlytoimplementalltherecommendations.herteamisverydedicatedtoimprovingqualityofl i feandsolvedifficultissues.

12/4/20139:37AM

46 Ourcaseworkerisveryresponsivetoourneeds. 12/4/20139:34AM

47 TheMooreCenterhasprovidedsomuchforher. 12/4/20138:42AM


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48 Iendupdoingmostoftheresearchandfootworkwhenachangeinservicesisneeded.Thereisfrequentturnoverofpersonnelwhichmakesanycontinuityinservicesverydifficult.

12/3/201311:15PM

49 Itseemsthereneedstobemorenursingorrehabil itativepartic ipationonthetreatmentteams. 12/3/20139:30PM

50 Atsomepoint,thefocuson"goals"andapersonwithDDachievingthenextstepisannoying...Inowitneedstobeframedinaconstructiveway-butaDDpersonisanadultindividualthatneedstobeacceptedandcelebratedforwhotheyare-andnotexpected(unrealistically)tocontinuetodothingsorlearnthingsthatarenotpossibleforthem.Anadultneedstobeavalidandcontributingmemberoftheircommunityusingwhatevergiftstheyhave...keeping'goals'setupaswhentheywereinschoolispatronizing,andawasteoftime.Thefocusshouldbeonhowtheyarepartofacommunitythatsupportsandhonorsthem.

12/3/20138:40PM

51 theonlythingthatisabitfrustratingattimesistheamountofpaperworkinvolvedtobedonebyourcaseworker,ourproviderandmyself.ItseemstomethatweNEEDachecksandbalancesystembutsometimestheinformationneededisjusttoorepetitive.

12/3/20134:23PM

52 IgreatlyappreciatealltheassistanceGatewayshasgivenus. 12/3/201312:44PM

53 Gatewaysimplementsacookiecutterapproachforthepopulationit"serves."Forexample,nearlyeveryonewasrecommendedtotakeanexpensivemusic"therapy"c lassregardlessoftheirabil i tytopartic ipatemeaningfully-afinancialwindfallfortheCommunityMusicSchoolofManchester-andanexpensiveimpositiononthec itizensofN.H.andtheU.S.sothatGatewayscanspendthetimeoftheir"c lients"andappeartobe"doinggood."Theindividualc lient'sneedswereNOTtakenintoaccountwhenplanning"services"whichcouldmoreappropriatelybedescribedasveryexpensive"approved"time-fi l lers.

12/3/201312:37PM

54 OntheStatelevelwearerequiredtofightandfightandfightforthedisabled.Thisshouldnothappen.Thisshouldbecoveredandcoveredrightwithouttheyeartoyearfightforfunding.LikeIsaidbefore,thesearehumanbeingnotanimalswearetalkingabout.SometimesIfeeltheanimalsaregivenmorecarethanthedisabledwhenitcomestofundingandservicesinplace.Likeanybudgetitshouldbeautomaticallycoveredwithoutallthisyearlyaggregation.Iam68,myhusbandis81andwearetiredofthisyearlyfight.

12/3/201311:47AM

55 ThiswasformyDadwhohassincepassedaway. 12/3/201311:02AM

56 Myexperienceontheseteamsisthatgoalsforc lientsarebeingwrittentoaccommodatetherequirementsoftheState,ratherthanwrittentoaccommodatethec lients'actualwishes.

12/3/201310:39AM

57 Iwouldn'tcalli ta"team"thatwemeetwithbutasmysonhasaconsumerdirectedcareplaninplacewedomeetannuallywithhis"caremanager"atourareaagencytoreview/developehisannualcareplan.Additionallyhiscaremgrmeetswithhimacoupleoftimesayeartocheckinandseehowheisdoing.....

12/3/20138:58AM

58 Inthebeginning,itwashardtocoordinateservices,butoncemysongotacaseworker,thingssmoothedrightout.

12/2/20137:59PM

59 Theproviderswouldl iketooutl ineanallinc lusiveprogrambutcan'tbecausetheresourcesaresimplynotavailable.Youcan'tadvertiseaLexusandthemprovideaFordandnotexpectcritic ism.

12/2/20134:17PM

60 Iaminvitedtoattendandpartic ipateineveryannualISPmeetingaswellasquarterlyreviewformyson.Hishomecareprovidersalsoattend.

12/2/20133:21PM

61 Ittakesaverylongturnaroundtimetorec ievearesponse. 12/2/20131:57PM

62 LocalGatewayshelpstakecareofallofthat 12/2/201312:42PM

63 Serviceavailabil i tyandsatisfactionvarybypopulationtype. 12/2/201312:25PM

64 Therehavebeentimeswhenyoufeell iketheserviceprovidersareworkingagainstyouandyounevergetresolution.

12/2/201311:58AM

65 NoresponsefromindividualsthataresupposedtobehelpingTheseprogramsaresupposedtobeclientdriven,butIfindtheservicesareattheconvenienceoftheagenciesandtheworkersinvolved

12/2/201310:36AM

66 onewasveryhelpfulaotheronewasnotveryhelpful. 11/30/20131:18PM

67 ThiswasdonewhenmychildwasusingEarlySupportsandServices.Thisisnotcurrentlydoneinoursituation.

11/29/20134:03PM

68 EventhoughIpreferthecurrentareaagencysystem,itisnotfundedsuffic iently.Mydaughterregressedfor10yearsbecausehercapacityforself-carewasover-estimated.Shefinallywentintotwocrisesbeforebeingconsideredforahome-provider.

11/29/201311:18AM

69 Wouldl iketomeetmorethanonceperyear. 11/28/20138:24PM


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70 TheWinnisquamSchoolDistric tdidnotdoitsjobinpreparingmydaughterfortransitionfromhighschool.TheIEPteamwasnotanxioustorecognizetheextentofherdisabil i tyandserviceswhileshewasinhighschoolweremarginal.OurexperiencewithLakesRegionCommunityserviceshasrestoredourfaiththatourdaughter'sneedscanbemetandexceeded.

11/28/20132:34PM

71 TheAreaAgencysystemisthebestbecauseitisgovernedbyitsusers-peoplewithdisabil i tiesandfamilymembers.

11/27/201310:50PM

72 Myexperienceisschool-basedarounddevelopingandimplementingmyson'sIEP.Alloftheplayersworkonsiteandareexpectedtoshowupatthesemeetings.Idon'tknowhowrealistic itistoexpectthatallteammembers(especiallydoctorsandmentalhealthprofessionalswhoarealreadytaxedandreceivinglowreimbursementrates)aregoingtobeabletopartic ipateinsuchteammeetings.

11/27/20138:58AM

73 Somehavebeenextremelyhelpfulandothersextremelydifficult. 11/26/201311:53AM

74 Theprogramthatwehavedevelopedisverygood-thefrustrationarriveswhenpeopleinterprettherulesasrequiringthattheirbeachangeinaprogram-evenwhentheprogramandindividualdonotwishtohaveachange.

11/26/201310:50AM

75 Providersaresti l l basedinamedicalmodelratherthanpersoncenteredtoomuchofthetime 11/26/20139:37AM

76 Schoolprogram 11/25/20133:26PM

77 Theprivateprovidersaregreatbutthecommunitybridgesstaffareverydifficulttodealwith. 11/25/20131:59PM

78 Ourfirstmeetingwil lbeinDec. 11/25/201312:39PM

79 Teammembersfromtheareaagencyhesitanttoplacepeopleonthewaitl istforservices,evenwhenfamily,guardian,andotherteammembersfeelincreaseinservicesarerequired.

11/25/201311:08AM

80 Schoolanddirectsupportprovidersareawesomeandinvaluableanddonotcostadditionalfundsfortheinput.Theareaagency,whichtakesfundsawayfromtherecipientisanightmaretodealwith.Theydonotaddvaluetotheprocess.

11/25/201310:44AM

81 Aftertenyearsofstrugglingtosecuretherightsupports,theareaagencyproposedthatourfamilyimplement525supports.WecombineAAserviceswithHomeHealthServices.Thiscombinationofsupportshasbenefitedmysisterbecauseherqualityofl i fehastwo-foldedandourfamilycansti l lfunctionwithourday-to-dayneeds.

11/25/20139:37AM

82 TheAreaagenciesserviceagents/casecoordinatorsareveryhelpful…asmuchastheycanbe.Theycan'tprovideanythingbeyondwhattheNHlegislaturehasallocatedinthebudget.SoagainIthinkthisquestionissomewhatinappropriate.Youaresomewhatleadinguninformedfolkstocometotheconclusionthatiftheydon'thaveadequatesupportsandservicesthattheareaagencyisatblame.Iffolkssaytheyhaveaconstantbattleitdoesn'tnecessarilymeanit'stheareaagency'sdoing.

11/25/20139:12AM

83 ibelievetheserviceprovidersareprofitcentersanddonotinvestandprovidethenecessarytrainingforthierstaff.Aswell,i believethestatecouldtakeontheservicedeliver,makeitastatejob,andsavemill ionsofdollars.

11/25/20139:00AM

84 ItwasapilotprojectthroughHoodHouse.Wehadonemeetingandthefundingwaspulled,sonothingevercameofit.Iwasverydiscouraging,becauseitrequiredabitofprepworkonmypartandthenitstoppedwithouteverstarting.

11/24/20132:41PM

85 areaagenciesareveryhelpfulinhelpingtoexplainservices,findresourcesandinformationandhelpsetgoalsforc lients.theyareawareofchangesandshareinformationtofamilies.

11/24/20131:25PM

86 IneedtobeinvolvedalotbecausetheBCBAdoesn'tgetenoughcoveredservicehourstohelpoverseealltheprograms.Weget10hoursofABAaweekandshecomes1hour

11/24/201310:02AM

87 First,itisdifficulttogettheseteamstomeetandforthemfunctionwellalltherepresentatives/providers(inc ludingschoolandhealthcare)shouldbepresent.Butthereisnowaytoreimbursemanyoftheseprovidersfortheirtimeiftheyarewil l ingtopartic ipateinsuchateam,thustheirinputisusuallynotavailable.Second,theteamsonlyworkiftheconsumerorconsumer'scaretakercomestothetablewithagoodunderstandingoftheneedsthatexistandtheservicesthatareavailableandiscapableofadvocatingforthemselves.Italsohelpsiftheconsumer/caretakerisableto"thinkoutsidethebox"inordertocreativelydesignservicestomeetcomplexmultipleneeds.Ifearthattoooftenconsumersandtheirfamiliesareunabletodothisforthemselvesandfallvic timtoa"rigid"matchingofservicestoneedsinaninflexiblemanner-sortoftakingoftaking"squarepeg"needsandshovingtheminto"roundhole"services.Thatdoesn'twork.Sometimeexistingservicesneedtobere-interpretedortheirdesignneedstobetweekedtomeettheindividualneedsofaconsumerwithmultiplecomplexdisabil ities.

11/24/20138:02AM

88 Areaagencyextremelyhelpfulinworkingwithusongoalsandproviders. 11/24/20138:01AM


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89 CommunityPartnershasbeenatremendousresource 11/23/201310:24PM

90 Gatewaysstaffareverydedicatedandcaringindividualsandisawonderfulorganization.Ijustthinkthattheiroverheadratesandpercentagesshouldmatchtheservicestheyprovidetoeachc lientindividually.Whenyouhaveaparentwhoishiring,preparingpayrollandquarterlyreportstheirbudgetshouldnotbechargedthesameoverheadrateasac lientthatGatewaysisdoingallofthisworkfor!

11/23/20139:51PM

91 Mybrotherhasthatservice.Ihaveonlybeentotwomeetingsandtheywerehelpful.ButmymotherhasdonemostofthisandIdon'tknowherfeelings.Ithinktheyaregenerallypositive.

11/23/201310:54AM

92 ButtheysaynotenoughmoneyforwhatIneed.AtechsaidIshouldn'tuseFC.That'snotok.Iuseitalot.

11/23/20138:40AM

93 OnlyissuesIrunintoiswhenmysonneedssomethingthatisnotsupportbyBDS,l ikedental. 11/23/20138:03AM

94 AngelhasbeenwonderfultodealwithandIdon'tknowwhereIwouldbewithouther.Whenshesaysshewil llookintoordosomethingshedoesit.Notenoughpeopletakeprideandshowsomuchcompassionasthiswonderfulperson.

11/23/20137:48AM

95 WehavethespecialmedicalserviceswithKatieLajoieandshehasbeenwonderfulinhelpingusnavigatethroughthesystem

11/23/20134:31AM

96 Inmyexperience,theseteamsmeetandsaylotsofthingsaboutwhattheyaredoingbutspendlittletonotimelisteningtotheconcernsoftheindividualorfamily.Itendsupbeingareportingtimeinsteadofapersoncenteredsession.Thefocusshouldbe,"whatcanwedotomakethisperson'sl i febetter,"andnot-thisiswhatIamdoingandthisiswhattheindividualdid.Thesemeetingsneedtobeadialogue.Thefamilyandindividualneedtobel istenedto.Iftheysay-Ineedmorehoursoraridetochurchoranythingl ikethat,thenthatshouldbethefocus.Makethisprocessindividual-centric .

11/22/201310:14PM

97 ThepeopleIdealwithareveryhelpfulandreceptivetoanyconcernsandwealltrytocomeupwithideasandpossiblesolutions.Theyalwayswil lcallbackandtalkwithmeatanytimeIfeeltheneed.

11/22/201310:02PM

98 Theteamofprofessionalsweworkwithforoursonhasbeenexceptional. 11/22/20136:43PM

99 Theseteamswerealwaysassociatedwithschool.NowwehavearepfromCommunityBridgesthatmeetswithusperiodically.Shehasbeenhelpfulinbrainstormingwhenweneededsomething.

11/22/20136:30PM

100 Mostofourdirectprovidersarefine.Someofthecompaniesthestatehascontractedto(suchasSchaller-Anderson)employedextremelyobnoxiouspersonnelwhowererudeandhosti leduringevaluations.

11/22/20135:27PM

101 Mysister'sresourcecoordinatorassiststhefamilybyadvocatingformysisterand,alongwithorintheabsenceoffamilymembers,helpingmysistermakewisedecisionssoshecanmaintainasafe,independentl i fe.

11/22/20133:39PM

102 IcheckedoffSomewhathelpful,butit'satiebetweenthatandaConstantBattle.Thereisnowherenearenoughhelpforfamilies.It'sallaboutgivingsupportandmoneytopaidhomeprovidersandthatisjustwrong.

11/22/20133:27PM

103 Thecasemanagerfromourareaagencyisagreathelpbutsomeofthosewhoworkwithmydaughterdonotfollowthroughwithplansorc itemoneyasanimpediment.

11/22/20132:44PM

104 DaughtersIEPmtgs 11/22/20132:39PM

105 Meetingsarenotwellfac il i tated,itisaboutmeetingtheregulationprocessofcompletingaserviceagreement.Meetingsaregenerallynotcreativeduetotheprocess.Mostofthetimeasafamilywemanagewhatneedstobedoneandusethe'professional'sourcesforeducationonwhattheregualtionssaywecanandcannotdowithtehMedicaidfunding.

11/22/20132:07PM

106 Itisaconstantbattlethatwearsyoudownandburnsyouout.Somanymorefamily'scoulddoandwoulddoabetterjobifthingsweresetuptohelpeveryoneequally.Whenyoufindoutyearslaterthattherewassomethingthatcouldhavehelpedoutandnoonetoldyouaboutitisasetupforfailure.Wedon'treallywanttobeburdensonthesystem,butI'veknowmanyfamiliesthathavegottensofrustratedtryingtobehonestorworkhardandenduploosingbenefitsornotgettingthematallandseeothersthatdothingsthe"otherway"andgeteverythingtheyneedandmore.

11/22/20132:06PM

107 Teamsvaryintheireffectiveness. 11/22/20131:48PM

108 Myexperienehasbeenwithschoolteamsthataresupplementedbymedical,VR,andhumanservicesproviders.Generally,theproblemshavebeen:(1)Lackofrespect/trustamongprofessionalsfromdifferentsystems;(2)Tentionoverwhowil lpayforwhat.Also,Iamastrongadvocate,butIwonderwhathappenstoparentswhoarelesswellinformed.TheyareatasignificantdisadvantageandtherearereallynoaffordableadvocacyservicesinNH--EvenPICchargesparents.

11/22/20131:17PM


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109 Myson'sserviceprovidersareveryhelpful.However,sometimesitseemshardtofindaplanthatwil limprovehislongtermoutcometomeetthegoalsthatarereimburseablethroughMedicaid.Forexample,duetoautismheisinneedofsignificantcommunityservicestogethimtolearntodealwithothers,readsocialcues,engageinsocialactivities,etc.,butsomeofthesuggestionsIhavemadearenotreimburseablethoughMedicaid.Suchservicesarenecessaryfortheseyoungadultsastheylearntomaneuverindependentl i feandmoveforward.

11/22/201311:41AM

110 Seeearliercomment.Also,Gatewaysactivelyencouragesandpromotesprograms,vendorsandserviceorganizationsinthecommunitysothattherearelotsofchoicesandopportunitiesforpeoplewithdisabil i tiestofindactivitiesandsocialgroupsthataresuitedtotheirinterests.Thatencouragementisasimportantasdevelopinganindividualprogramtotakeadvantageofthoseopportunities.

11/22/201311:26AM

111 Ivaluethein-person,face-to-faceinteractionsandsupportwereceivetohelpinplanning,problem-solvingandimplementation.

11/22/201311:23AM

112 Truth,someonelikemyselfwhoworkswithindividuals24hrs,365days..knowstheirneedsmorethansomeonewhoseesthemonceandawhile.Thesaying...To"ManyHandsInOnePot"..isagiven.Iamtheirbestadvocate

11/22/201311:17AM

113 Thepeoplehavebeenveryhelpfulintryingtoobtainappropriatesupports,however,aresometimeslimitedbecausesomethingisnotcoveredthroughMedicaid.ThetwothingsthatIhavebeendesperateforis1.Aservicedogthatwouldalertmewhenmysonelopesinthemiddleofthenight2.Acabinetthathaslocksonthedoorsanddrawersasrecommendedbyhisbehaviorist.Neitherisreimbursable-theydon'treimburseforservicedogsor"furniture".Bothofthesethingswouldbeanincrediblerelieftome-especiallyasasinglemotherbecauseIjustcan'tbeone-on-one24/7.

11/22/201311:17AM

114 Certainpastexperienceshavebeenveryunprofessional. 11/22/201311:11AM

115 ComunityBridgeshasbeengreat! 11/22/201310:57AM

116 Havingtheoptiontoself-directorfamily-directisthereasontheteamandsupportswork. 11/22/201310:24AM

117 MygrandsonhasbeenMRallhisl i fe,inc ludingbipolar,ADHD,backcurvatureandAlcoholanddrugfedalsyndrome.Hehasseendoctorsandhadmedsallhisl i fe.NowtheguyatRiverbendsayheisonlyADHDandage19whichtheydonottreat.

11/22/201310:24AM

118 Ourcurrentareaagencyisextremelyhelpful.Weselectedourcurrentareaagencyafterhavingaverybadexperienceswithourlocalareaagency.Havingthischoiceisvitalandmorefamiliesneedtobeawaretheyhavethischoice.WithanychangetoNH'slongtermcaresystem,Ifearthischoicewil lbelostandthisisaverybadthing.

11/22/201310:19AM

119 theteamisalwayssuggestinggeneric suggestions.Overtimethesehavebeentried.Withthelargeturnover,muchtimeisspentwiththeseindividualsjustgettingacquaintedwiththec lient

11/22/201310:18AM

120 Someprovidersaresoinvestedinmaintainingthestatusquoitsdifficultforthemtosee"outsidethebox"whenitcomestoservicechoices.

11/22/201310:11AM

121 alwaysneedingtokeepuponthemsothejobgetsdone 11/22/20139:47AM


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74.42% 419

55.06% 310

79.04% 445

75.84% 427

57.02% 321

59.33% 334

58.97% 332

10.30% 58

Q15Ifyouhavehadexperiencewithacasemanager,servicecoordinator,or

someonewhoservesinthatrole,whatisimportanttoyouaboutthatperson'sability

tohelpyoumeetyourneeds?Answered:563 Skipped:329


# Youarewelcometocommentifyouwouldlike Date

1 Everycaseworkerhassoundedencouragingbutnothinghappensasaresultoftheirvisit. 12/9/201312:34PM

2 GreatBayisawonderfulplaceitistobadtheyandoneskycan'tworktogether 12/8/20135:02PM

3 Il ikenothavingmyservicecoordinatorchangeeveryyear.Il ikeTanya. 12/8/201311:08AM

IssomeoneI(we)can

meetwith...

Isavailablenearlyany

timeI(we...

Isexperiencedandknows...

Listenstome(us)

Letsme(us)makeour

owndecisions

Worksforme(us)

Isresponsivein

acrisis...

I(ormyfamily

member)ha...

0% 20% 40% 60% 80% 100%


IssomeoneI(we)canmeetwithface-to-face

IsavailablenearlyanytimeI(we)needhimorher

Isexperiencedandknowshowthesystemworks

Listenstome(us)

Letsme(us)makeourowndecisions

Worksforme(us)

Isresponsiveinacrisissituation

I(ormyfamilymember)hasneverhadacasemanagerorservicecoordinator


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4 Can'tsay.Casemanagerdidnotreturncall 12/8/20136:21AM

5 Iworrythatmydisabledchildwil lneedacasemanagerwhenIcannolongerfi l l thatrole.Idon'tknowhowmychildwouldqualifyforoneorhowtogoaboutgettingone.

12/7/201311:52AM

6 Mysister'scasemanagersfromGreatBayServiceshavebeenveryhelpfulinmeetingwhenneededandknowing(andunderstanding)thesystemandmysister'sneeds.

12/7/201310:40AM

7 Havingsomeonewhoisknowledgeableandreadilyavailableinacrisissituationhasbeeninvaluable,notjusttomydaughterbuttoourwholefamily.Thesededicatedprofessionalshavesteppedin,nottakenoverandhaveprovideduswithpeaceofmindduringtheseexceptionallytryingtimes.

12/6/201311:02PM

8 Ourson'scasemanagerisexcellent-knowledgeable,accessible,helpfulandprofessional.Theonlycomplaintisthathe,oranotherperson,ismaynotbeavailablewhenacrisisdevelops,ie.nights,weekends,&holidays,inparticular.

12/6/20134:30PM

9 Ourfamilymemberreceivesgreatcare.Itisatragedythatmanyindividualswithmentali l lnessandtheirfamiliescannotaffordtheservicesneededtorestoreandmaintaintheirhealth.

12/6/20132:35PM

10 Aanattentivecasemanagercanmakeallthedifference,fromwhatIhearfromotherfamiliesinmysupportgroup.Ortheycanbeatotalzeroorperceivedascontroll ingbythementallyi l l person.

12/6/201312:18PM

11 Iwouldwantthecoordinatortoofferallthesealloftheabove. 12/6/201311:55AM

12 Mysonneededacasemanagerbutdidn'taccessservicesduetothestigmaandthecomplexnatureofthesystem.Becausehewasanadultitwasdifficultforustohelphim.

12/6/201311:34AM

13 Familymembershavereportedthattrustandconfidenceinthecasemanagerisveryimportant.Alloftheseselectionswouldapparentlybesignificanttraitsandrelationshipcomponentswithacasemanager.

12/6/201311:28AM

14 theseareallimportantqualities! 12/6/201311:27AM

15 Wehavebeenblessedtoworkwithsomewonderfulindividualsaffi l iatedwiththeMooreCenter,Idon'tknowwherewewouldbewithoutthem.MelissaJarvisourcurrentcontactisoutstanding,shehasbeenawonderful,caringandsupportiveadvocateformybrotherJamieandanincredibleresourceforourfamily.Thisisavitalservicethatneedstobesustained.

12/6/20139:52AM

16 andthattheycanthinkoutofthebox,ratherthanputmeinac irc lewhereIambackwhereIstartedwiththefirstperson,nothavingmyproblemsolvedorevenconnectedtosomeonewil l ingtosolveitwithoutofthebox,orratherc irc le,thinking..

12/6/20139:38AM

17 Ifindthistobeaverybenefic ialserviceandhelpstocompletethehome/servicesgap. 12/6/20139:37AM

18 allareimportantbutthese3areasstandoutashighlyimportant 12/6/20139:34AM

19 Ourexperiencehasbeenexcellentwiththecasemanager. 12/6/20139:19AM

20 IfNHinvestsshorttermfundingadequatelywewouldsavebil l ionsinlongtermcosts 12/6/20139:04AM

21 Essentailforsuccessfulhomemanagementoflongtermneed. 12/6/20139:01AM

22 Iamaprovider,notsomeonewhouti l izeslong-termmedicaid 12/6/20138:59AM

23 IbelieveserviceproviderssuchasCaseManagersprovideessentialfunctionsforthoserequiringservicesandfac il i tatemovingthroughvarioussystemsmucheasierthantryingtodoitontheirown.Alwaysmorepersonalandprovidesadirectl inkofsupportoftenneededbytheindividualortheirfamilies.

12/6/20138:04AM

24 Allthequalitiesl istedareveryneeded! 12/6/20137:36AM

25 Theseareaspirationalandnottherealityofwhatweexperienced 12/5/201311:41PM

26 Thecasemanageristhemostimportantserviceprovidermylovedonehas. 12/5/201311:02PM

27 Ihavehadacasemanagerforovertwentyyears.Havingaresponsivetreatmentteamhelpedmebeabletoraiseadaughterasasingleparentdespitehavingaseriousmentali l lness.

12/5/201310:41PM

28 Issomeonewhocanbecreative,think"outsideofthebox",isknowledgeableregardingresources,wil lhavedirectcontactwithfamilyandindividual,overseestheindividuals'servicesprovided,forqualityassurance,helpstheindividualandfamily/care-givertoapplyfornecessaryservices,coordinatesservices,refers,assists,supports,communicateswithallteammembers,assiststodevelopaplan,writesserviceagreementsspecific totheindividualsneeds,knowstheindividualandhis/herneeds,assistsinidentifyingtheindividuals'needs,followsthroughandfollowsup.I'msurethatthereismuchmorethatourcasemanagerdoes,asidefortheaforementionedandthecheckedoff.Wewouldbelostwithouther!

12/5/20139:59PM


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29 Wearetrulygreatfullforthepersonwhosupportsus.IhavenoideawhatIwouldhavedonethepast19years.

12/5/20138:19PM

30 Imperative-Havingthec lient,mentalhealthproviders,ANDguardians/familymembersallbeconsideredvaluablepartsofthe"treatmentteam".Ihavebeentoldbymyson'sdoctorthatmyhusbandnorI(wearealsolegalguardians),thatwearenotpartofthetreatmentteam.Veryinsultinginmyhumbleopinion.Weshouldallbeworkingtogetherinsupportofthec lient/familymember.Notinaconfrontationalmanner.

12/5/20138:19PM

31 mostarenewtothesystemandhavel imitededucationorexperiencesforcasemanagement 12/5/20136:57PM

32 Supportive,educatedfamiliesshouldbeapartofasuccessfultreatmentteam.Hipaashouldnotbemisusedasabarrier.Supportivefamilymemberscanhelpalleviateaburdenedprovidercommunity.

12/5/20136:32PM

33 Thissoundsl ikeagoodthing.Ithasbeenbroughtupseveraltimes,butnevercomestofruition.Maybebecausecasemanagerscaseloadsareoverloaded.

12/5/20136:29PM

34 Thecurrentcasemanagersuggestedtomydaughterthatifhermedicationmanagementthroughthecommunitymentalhealthcenterwasinadequateshecouldalwaysgotothehospitalforatuneup.

12/5/20136:19PM

35 It'snotenoughforacasemanagertomeanwell.Theyneedtoknowalotandbecreativeproblemsolverswiththematuritytoadvocateforthoseinneed.

12/5/20136:16PM

36 It'simportantthatacasemanagerseethe"bigpic ture"--thedifferentaspectsoftheperson'sl i fe,andallthedifferentserviceprovidersinvolved--andstayontopofitasthingschange.

12/5/20135:54PM

37 it'sawfulwhentheyleaveandyougetanewone 12/5/20135:36PM

38 TheonlycoordinatorwehavehadhasbeenthroughourAgeaAgency.Theyhavebeenkindbutnotgenerallyknowledgeableofhowthesystemworks.

12/5/20131:43PM

39 Theseservicesthroughtheareaagencyworkverywellnow.Pleasedon'tchangethecurrentsystem. 12/4/201310:13PM

40 Ihavebeenveryluckywithmycaseworkers. 12/4/20139:14PM

41 From2007-2011,whenIwasac lientatRiverbend,Ihadacasemanager-actually,Ihad5differentonesduringthattime.OtherthanEric ,myfirstcasemanager,theonlypurposetheyservedwere:transportation,gettingoutofthehouse/socialization,someonetotalkto.From2011-2013,asac lientatManchesterMentalHealth,mytherapistalsoservedasmycasemanager.Ihadthreetherapist/casemanagersin2yearsandnoneofthemdidanycasemanagement-Ididitallmyself.

12/4/20137:50PM

42 IamtheGuardianofapersonandtheydon'treturnmycalls,Iwouldl iketospeakwithapersonnotsomeonesvoicemailwhodoesn'treturncalls.

12/4/20136:57PM

43 knowledgeableinworkingwithcaregiversinmakingrealistic goalsthatmeettheindividualsneedsandnotwhatthey(casemanager)l ikeorthinkwouldbefunforsomeone

12/4/20133:02PM

44 Wehavebeenabletomeetwithourcaseworked,butIdon'tfeelthatourcurrentworkerreallyl istensortrulyunderstandstheneedforservicestoberegular.IfeelthatIdependonmyfamilymember'sservicessothatIcangotoworkonaregularbasisandkeeparoofoverourheads,foodonthetable,andthecarinoperablecondition.WhenIhavealreadyworkeda50hourweek,Ihatetohavetocallaroundforarespiteworkerbecausetheregularpersonisunavailable,Ibelievethatthecasemanagershouldhaveal istofsubsthatshecancontactduringaregularbusinessdaytocoverformyfamilymember.

12/4/20132:27PM

45 Ourcasemanager/serviceproviderduringourdaughter'sschoolyearswasavailabletomeetwithherPupilPlacementTeameachmonth.Theresultwasanintimateknowledgeofherprogrammingandmedicalneeds.ShewasinvolvedinprogramdevelopmentandtransitionandwaspresenttoguideusthroughtheMedicaidprocess.Thecasemanagerdirectedthefamilythroughthetransitionprocessfromelementarytohighschooltopostgraduatephasesofherl i feseamlesslyandwithoutnegativeinc ident.AsshelefttheschoolandenteredtheSDSProgram,thecasemanageroverlappedserviceswiththenewcasemanagerinchargeofSDSProgramstoassureasl ittledisruptionaspossible.Becauseoftheseefforts,ourdaughter'sl i fewasnotdisruptedandshereceivedthecontinuouscaresheneeded.

12/4/20131:35PM

46 Isinexperiencedandneverhasananswerrightaway,havingtoasksomeoneelseforanswers.Poorqualitycasemanager!

12/4/201312:49PM

47 HaveaQUALIFIEDandCONSISTENTcasemanager.Weweretossedaroundtodifferentcasemanagerseveryfewyears(notbecausetheylefttheagency)beforeconsumerdirectedcare.

12/4/201311:52AM


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48 pathways603-542-8706casemgrKaitlynMackisthebestbecausesheisorganizedandgoaloriented.SherespondstoeachissueIbringupinamethodicalway.JodyfennesseythereisrunningtheStarsevalteam-wewenttoUMassteamJodyisverygoodatmakingthingshappen.veryhappy-canbedifficultjumpingthroughalltheStatehoopstogetherthehelpsheneeds.

12/4/20139:43AM

49 Anyserviceproviderwehavespokentohasbeenveryhelpfulandhasbeenveryreassuringthathelpisthereshouldweneedit.

12/4/20139:42AM

50 Jadeisexceptionalinalloftheabovecategories. 12/4/20138:43AM

51 OurServiceCoordinatorisextremelyinterestedinourinputandiswil l ingtoenactstepstomeetourmutualgoals.

12/4/20132:14AM

52 Again,thefrequentturnoverandinexperienceofcasemanagersmakesprogressdifficult. 12/3/201311:17PM

53 Ihavealwayshadoutstandingcasemanagers,butIbelievethatthetimeiscomingwhensomefamilieswil lbemoreknowledgeableaboutoursystem...andgreatforthem,butforthosewhodoNOTunderstand...thosestaffwiththemostknowledgewil lleaveorlackoffinancialcompensation,politics,beingburnedout,orallthree.JanLarsenhasyettobereplaced!

12/3/20138:44PM

54 Ourcurrentcaseworker,Lisa,getsbacktousquicklyandisalwayslookingforwaysshecanhelpus.I'mnotsurethattherecouldbeabetterconnectionforoursituation.MyonlyfrustrationwiththeMooreCenterincaseworkerregardisthatwehavehadseveral...sowehopewecankeepLisaforagoodlongwhile.

12/3/20134:25PM

55 Iassumecasemanagerisl ikearesourcecoordinator.Itseemstomethatalotoftimeisspentonfewindividualswhodon'thaveadequateservices,andtheresourcecoordinatoractsl ikeafi l l-in.Thenotherswhomanageok,ordon'tcomplain,don'tgettheattentiontheyneedorwantfromtheresourcecoordinator.Definitelygoodpeopleandexperienced,butoverwhelmedwithpaperworkandafewveryneedyindividuals.

12/3/20134:02PM

56 GatewayscasemanagersandservicecoordinatorsIexperiencedwerepoorlyinformed,appearedtobepoorlyeducated,andweremoreconcernedwithpleasingtheirbossesratherthanwithgivingtheirc lientstheattentiontheydearlyrequireanddoingthejobwhichMedicaidexpectsthemtodo.Gatewaysemployeesrepresentan"usagainstthem"systemwhereMedicaidc lientshavetopleaseandflattertheGateways"gatekeepersoffunds"togetwhattheyneed.Theentiredisabil i tycaresystemwouldbetterserved,muchmoreeffic ient,andconsiderablylessexpensivewereGatewaysandsimilarareaagenciessimplyandimmediatelycutofffromtheprocessandaknowledgeableandprofessionalorganizationsuchasBlueCross/BlueShieldhiredtoadministerMedicaidfunding.

12/3/201312:49PM

57 Mostoftheabove.Listenstoourconcernsandincorporatesintotheplandeveloped.HelpedmeextensivelywithSocialSecurityandsettingupSpecialNeedsTruststherightway.Decisionsaremadebybothpartiesinthebestinterestofourc lients.WehaveacasemanagerandaservicecoordinatorwhoIcancallanytimeIhavequestionsorconcerns

12/3/201311:50AM

58 Itisimportanttohaveapersoninthisrolehelpusnavigatethroughthesystem(s).Iwantthispersontotelluswhattheywouldadvisefortheirownlovedone(I.e.,putthemselvesinourshoes).

12/3/201311:04AM

59 CasemanagerfromCommunityBridgesiswonderful.CasemanagementatCrotchedasmuchtobedesired.

12/3/20139:43AM

60 WorksforORwithustoachievegoalsandtohelpwithestablishingthosegoals 12/3/20139:24AM

61 Iamacasemanager/servicecoordinator 12/3/20139:11AM

62 Facetofaceisnotnecessaryonadaily,orevenweeklybasis,buttheabil i tytodosowhenneededispreferable.Daily/weeklycorrespondenceviae-mailisVERYimportant,especiallyforthatpersontohelpmerememberwhenthingsneedtogetdone.

12/3/20139:06AM

63 Ioftentimesstrugglewithtimeframesinwhichourcasemgrisabletogetbacktomewithinformationrequested.Oftentimestheissueisthathe/sheisdependentongatheringinformationfromotherswithingtheDHHS/Medicaid/Statesystemsandthelackofcommunicationandlackofsharedknowledgebetweenallofthese"players"makesitverydifficulttomovesomethingforward!

12/3/20139:01AM

64 meetwithcoordinator1or2timessinceassigned.Notsurewhatservicestheycanprovideorassistwith 12/2/20138:19PM

65 Peoplewanttobel istenedandunderstoodintheireffortstobeaproductivecommunitymember. 12/2/20134:26PM

66 Theindividualshouldl istenandgettoknowthepatientandthepatient'sneed.Theindividualmustdowhattheysaytheyaregoingtodoandnotjustsayalltherightwordsandfi l l outthepaperworktosatisfyStaterequirements.Thepaperworksisthetail,thatwagsthedog.

12/2/20134:22PM

67 TheAreaAgencyisveryresponsive,helpfulandeffic ient. 12/2/20132:07PM


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68 Iamthecasemanager. 12/2/20131:58PM

69 Wehavehadservicecoordinatorsthatareuselessanddonottaketherejobsveryseriously.Ifwecallwithaconcernabouthowoursonisbeingtreatedorhowsomethingcanbefundedweexpectatleastaphonecallbackinatimelymanner.Iknowthattheyaresupposetomakequartleyvisitstomysonsprogramthatdoesn'thappenwithanyreguarlity.

12/2/201312:02PM

70 Therearecasemanagerswhorefusetomeetw/theirc l ientsotherthanwhatisrequiredbytheCFIprogram.Therearemanycasemanagerswhoonlyprovideamedicalmodelofsocialworkanddonotprovideholestic andcomprehensivecasemanagement.

12/2/201310:39AM

71 WehaveaServiceCoordinatorinourIHSprogrambutitisn'tateam.WedohaveanIEPteamatmyson'sschool.

12/2/20139:04AM

72 Thisworks! 11/29/20136:12PM

73 Someonewhoisgoodatcommunicating.Someonewhoworksonanyandallissuesthatarise.Theyneedpeopleanddollarresourcestohelpmakethingswork.Nothingisworsethansomeonethatisunresponsive.

11/29/20136:03PM

74 LakesRegionCommunityServiceshascasemanagersthatgotheextramiletoensurethatmydaughterisreachingherpotentialinasupportedatmosphere.

11/28/20132:35PM

75 IcanreachourcasemanagerortheagencyCEOanytimeofdayornightandtheyareavailable-goingaboveandbeyondifthere'sacrisis.Wehavetheircellnumbers.TheMCOswil lbereachableviaacallcenterM-F,9-5.Wewon'tbeabletoreachtheCEOofCenteneonaweekend!(orever)

11/27/201310:53PM

76 Asaserviceprovider,Ibelievethelevelofquality&responsivenessofservicecoordinatorsishigh.Ourfamiliestellmetheyhaveahighdegreeofsatisfaction.

11/27/201311:17AM

77 Keepupthegoodwork! 11/27/20138:36AM

78 Notveryexperiencedbuttriesveryhardandisunderpaidfortheworkhedoes 11/26/201312:18PM

79 Ourservicecoordinatorforourdaughterknowsheraswellaswedoandisthereforeveryeffectiveinhelpinguswithallaspectsofherprogram.

11/26/201311:26AM

80 Helpsusmakedifficultdecisionsandgivesusoptions 11/26/201310:27AM

81 Myexperiencehasbeenthatmycommunitybridgescasemanagerisnotknowledgeableintheareaofautismtreatmentforyoungchildren.

11/26/20136:32AM

82 Iwishwewedidn'thaveacasemanagershesawful. 11/25/20132:00PM

83 Empathytowhatwefamilymembers(whoaredoingalloftheworksupportingouradultchild)gothrough,andbeingnoun-judgemental.

11/25/20131:45PM

84 IamextremelypleasedwithCommunityBridgesandourcasemanager....eventhereceptionistwhoanswersthephoneispleasantandhelpful.ThesamegoesforthepeopleatVocRehab.

11/25/201312:41PM

85 IdonotbelieveIneedthisperson.Iamabletocoordinatemyson'scarewithoutamiddleman.IfIneedhelpthereareplentyofvolunteeradvocatesandnonprofitsthatarewil l ingtohelp.Inaddition,hisschoolteamisanexcellentresource.

11/25/201310:45AM

86 Throughtheareaagencysystemmysisterhadaboutfiveservicecoordinatorsinatenyearperiod.Mostrecently,shewasmatchedwithaservicecoordinatorwhichisproventobeagoodmatch.

11/25/20139:40AM

87 Forthisquestionitwouldhavebeenhelpfultodefine'casemanager/servicecoordinator'fortherespondents.Iinterpreteditasthepersonfrommyareaagencywhositsdownwithmetodevelopmydaughter'sbudgetandgoals…themainpointofcontact.IknowthatthecommissionerandotherrepresentativesfromDHHShaveplayeduptheconceptofa'carecoordinator/manager'intheJuly2012informationalsessions.IaskedNancyRoll insspecificallyabouthowmanyfolksareexpectedtoreceiveacarecoordinator/managerandsheemailedmeback,"FromDHHSpastexperiencewithapilot,i twasfoundthat5-10%oftheconsumerpopulationwouldneedmoreactiveoutreachandactivityinordertoassureaccesstocareandqualityhealthoutcomes.Thusthereisaroleforacaremanager.."That'saverylowpercentage.AsamomIcurrentlydothatandenvisionfi l l ingthisroleunti lIamnolongerable.Thisiscertainlyavaluableandneededserviceforanindividualwhodoesn'thaveafamilymemberwhocantakethatrole.Soinsteadofchangingthesystemweshouldbethinkingabouthowwecanimplantthatinourhigh-qualitycurrentsystem.

11/25/20139:28AM

88 EveryindividualatCommunityPartnershasunderstoodmyson'sneedsfromage3unti lpresent(age21).

11/25/20139:01AM

89 helpsmeseethatsometimesmyowndecisionsarenotthebestandisabletoworkwithmetohelpmeunderstandthebestdecisions

11/24/20137:27PM


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90 nobodycontactsus-itisuptometokeepadvocatingformyfamilymember-veryfrustrating 11/24/20136:47PM

91 Iamnotsureiftheregionservices(OneSky)appliestothis. 11/24/20131:52PM

92 Ourservicecoordinatorhasbeenveryhelpfulandhassomeexperience.Il ikethefactthatifshedoesnotknowtheanswertoourquestions,shecangetthemfromothersinheroffice.

11/24/20131:30PM

93 casemanagersarecrucialinprovidingmuchneededsupport,informationandservicestofamilies.Theyareimportantinhelpingtoknittheplansandservicestofamliesonastasteandfederallevel.

11/24/20131:26PM

94 Mostimportanttheyareexperiencedwithservicesdeliveredacrossthespectrum-wehavemultiple"casemanagers"(4atpresent-buthavehadmoreinthepast)allworkingindifferentStateorpublic lyfundedagencies.Yet,itisaprivatetherapistwhowerelayuponmostfor"casemanagement"becausesheistheonlyonewhowil lconsistentlymakeherselfavailabletocontact,communicatewithandattendmeetingswithotherproviders.Yet,sincethisisnotconsidered"therapy"servicessowehavetoprivatepayforhertodothis.Tothecreditofmanyoftheproviders-atleasttheschools,theyhaveobservedthevalueinthisandhaveoptedtocontractwithheratthebeginningofeachschoolyeartoprovidetrainingandconsultationservicestotheirstaffwhoworkwithourchild.Atruecasemanagerhastobewil l ingtomanageservicesfromavarietyofdifferentprovidersandacrossmanydifferentsilos.Evenwiththesupportofourchild'stherapist,Iaverage4-10hoursperweekprovidingcasemanagementservicesforourchild,sometimesevenmorewhensheisincrisis.Thisistimetakenawayfromprovidingdirectcareandmeetingtheneedsofotherfamilymembers.

11/24/20138:12AM

95 Communitypartnershasbeencrucialinsupportingmysonsneedsinaverypersonalway.Icancallanytimeandwil lgetapromptcallback.Ihaveworkedwithmanypeopletherewhohavebeentheresincemysonwas3.Thisisimportanttoworkwithconsistencyinstaffandreallyknowyourchild/adult.Theyknowmeandmysonverywell.Thisisimportantinarelationshipyouneedinasituationl ikeours.TheyhavebeenhelpfulmorethanIcouldpitintowords.

11/24/20138:05AM

96 Understandsthecomplexities,speakstoyouwithcompassionandunderstanding,isresponsivetoemails/calls,advocatesonyourbehalfwhenneeded.

11/23/201310:25PM

97 Consistencywithyourservicecoordinator.Thereisahighturnoverrate. 11/23/20139:53PM

98 na 11/23/20134:18PM

99 TheoneIgotlastyearischangingagain.Ihatethat 11/23/20138:40AM

100 OurCMisveryresponsivetoourneeds.WeknowwehavetherighttochooseaCM,wehavehadthesameCMforthepast9years.

11/23/20138:05AM

101 Angelworksmiracles...forus 11/23/20137:49AM

102 Wedidhavesomecarecoordination,andIdohaveanadvocatetohelpme,butrightnowthefocusismainlyaboutschool.

11/23/20137:42AM

103 Thecasemanagermusthaveexperiencewiththepopulationorsometypeofpersonalinvolvement-otherwisethereisnocredibil i ty.Thecasemanagermustdobetterthanjustusingtheyellowpagesandsaying"oh,trythisplaceandthat."Thecasemanagerneedstohavearelationshipwithprovidersinthearea.

11/22/201310:18PM

104 TheseanswersarerelatingtoourResourceCoordinatoratourAreaAgencythatisassignedtous. 11/22/201310:04PM

105 Thispersonalsomusthaveempathyforthec lient. 11/22/20136:44PM

106 Otherthanturnoverofpersonnelallthesethingsdohappennow. 11/22/20136:15PM

107 CommentsfromfamiliesIworkwith 11/22/20135:53PM

108 Personneedstobeunderstanding,intell igentandavailable. 11/22/20135:15PM

109 Servicefac il i tatorschangefartoooften. 11/22/20133:37PM

110 OftenIfeell ikeIhavetotrainnewcasemanagerswholackexperience.Idon'tbelieveIhavehadacasemanagerformorethanatwoyearperiod.Theyoftenmoveonduetothelowwagesandburnoutfromworkload.Therefore,theyoftendon'thavetheexpertisetohelpmewithaproblem.

11/22/20132:54PM

111 TheresnotalottodoinourfamilyasDaughterisonly16andtheresonlyrespiteavailable 11/22/20132:48PM


67/155

112 IthingLTSSneedsmorethanthetraditionalCaseManagerapproach.Theygetsofocusedonregualtionstheyoftenlosesiteofhowtoinvolvecommunitymembersinsupports.Itisnotallaboutmoremoneyandmoreprograms.Beingabletopayaneighbor,withouthavingtoputthemonpayrollforprovidingtransportationwouldbeagoodthingbutnotoftenthoughtaboutorsuggestedduetotheMedicaidregulations.Servicesthereforeendupcostingmore,BeingabletouseMedicaidfundstobyagascardeverynowandthentosaythankyouisalotmorecosteffectivethatbuil inganhourlywageforsomeonetoprovidetransportation.ServiceCoordinatorsoftendon'tthinkbeyondprograms.Somedobuttheyarerare.

11/22/20132:12PM

113 MyexperienceisifIhavehadagoodcasemanagerwhogoestheextramileoractuallysupportsthefamily,thatisfrequentlynotlookeduponfavorablybytheAA.

11/22/20132:09PM

114 Wehavehadseveralcasemanagerstheywerecompletelyuselessineverysenseoftheword.Itisagiantwasteofmoney.ThereisnodifferencebetweenthegeneralaccountmanagementandservicecoordinationandIhatethatIhavetospendhalfofmydaughtersbudgetonthosetwoservices.

11/22/20131:47PM

115 Noneofthesefitmyexperiences.Ihaveacasemangerwhoisunwill ingtoadvocateformychildneeds.Shefeelsherjobistomakemedoasthedayproviderwantsevenwhentheyrefusetocomplywiththecontractthattheywerehiredtodo.

11/22/20131:44PM

116 IthasalwaysbotheredmethatIhavetopayforcasemanagementoutofmyson'swaivermoney(CIHSWaiver).Idothevastmajorityofcarecoordinationmyself.

11/22/20131:18PM

117 Iamdysarthric ,ataxic,anduseawheelchair.Iam49andonCFI,Medicaidhasbeenverygoodtome.

11/22/201311:47AM

118 Kendraisfabulous! 11/22/201311:39AM

119 Neverhadacrisis,fortunately. 11/22/201311:26AM

120 Thishashistoricallybeenahighturnoverpositionmaybeduetohavingtoomanypeopleontheircaseloads.Thispositionisveryhelpfulinaccessingbenefitsandmaybefac il i tatingmeetingsthatcanarriveatpersoncenteredthinking,planningandaction.Again,historicallynotallservicecoordinatorsareuponbestpracticesofsupportingpeopleinthecommunityandcandomoreharmthangood.Sometimestheybecomeagentsoftheagenciesandnotforthepeopletheyserve.Whoispayingthem?Thatiswheretheirallegiencestands.

11/22/201311:23AM

121 HavingexperienceintheSystemcanbehelpful..howeverknowingtheperson.isthemostimportantfactor.

11/22/201311:20AM

122 IsavailabletoattendIEPmeetingsforsupportformeaswellasofferingoptionsthattheIEPteammaynotbeawareofthatcouldbecoordinatedbytheareaagency.

11/22/201311:19AM

123 Weloveourcarsmanager 11/22/201310:54AM

124 Itwouldbeniceiftheywouldtelluswhatprogramsareoutthereforthisteen.Whyiseverythingasecretorwhenyoureadaboutiti tmakesyourheadspin.Whydoyouhavetowaittobe21foradultdaycaretokickin.Wherealltheotherrulesintheworldyouareanadultattheageof18.WhydoyouhavetobedisablefortwoyearbeforeyoucanbeonMedicare??????.Whenyouwereborndisabled

11/22/201310:32AM

125 Youcanneverfindanyonetohelpwhenneeded. 11/22/201310:27AM

126 SeeRiverbendcomplaint. 11/22/201310:25AM

127 Thisgroupvarieswildly.TheClientneedstobeabletoshakelooseofancasemanager,etc.whoisnotcompatablewiththemandthefamily

11/22/201310:20AM

128 isproactivewithsuggestions 11/22/201310:20AM

129 Alltheabovepertainstoourcurrentareaagencycasemanager.Whenwewerewithourlocalareaagency,veryl i ttlewouldhavebeencheckedoff!

11/22/201310:20AM

130 knowswhatservicesareavailable.WedidnotknowaboutcertainMedicaidplansunti lwehadaccumulatedaconsiderableamountofmedicaldebtforourchildandhadtoconstantlychoosebetweengettingbasicneedsvstherapiesthatcouldchangehisl i fe.

11/22/201310:18AM

131 Althoughalli temsonthel istareimportant,formethemostimportitemonthisl isis"Worksforme(us).Itseemstobedifficultforsometorelinquishauthoritytofamilies.

11/22/201310:11AM

132 veryfrustratedattimesandhavegoodhadtogouptheladdertogettheresultsneeded 11/22/20139:48AM


68/155

80.20% 470

12.12% 71

7.68% 45

Q16Haveyouoryourfamilymembereverhadacareplanorservicesplan(IEP,wraparoundplan,serviceagreement,etc.)thatoutlinesyourgoalsandtheservicesand

supportsthatareneededtohelpaccomplishthem?Answered:586 Skipped:306

Total 586

Yes

No

Notsure

0% 20% 40% 60% 80% 100%


Yes

No

Notsure


69/155

24.84% 115

76.67% 355

11.88% 55

1.51% 7

0.86% 4

Q17Ifyouoryourfamilymemberhavehad,orcurrentlyhave,acareorservicesplan,whatwasyourroleindevelopingit?




1 onceagainOneSkyandGreatBaydonotplaywellinthesandbox.andthatmakesitveryhardforthefamilies

12/8/20135:04PM

2 TheISAiscreatedbythecasemanagerfromanannualmeetingwithmysister(c lient),2guardians,casemanager,andotherstaffmembersworkingwithmysister.

12/7/201310:44AM

3 Whileweenjoytheoptionofcreatingmydaughter'sserviceplan,itisveryhelpfultohavetheinputofknowledgeablestaffwhomakesuggestions,whichleadsustothebestoutcome.

12/6/201311:05PM

4 Iworkedwithothercareprofessionalstohelpthefamiliesdevelopaplan 12/6/20132:09PM

5 MEDICALPROFESSIONHASBEENINVOLVED 12/6/201311:02AM

6 Mostly,mycasemanagerdoesnothaveenoughtimetoreallydevelopitmuchfromthelasttime,althoughchangedoescomeslowly...andusuallyIamnottoldaheadoftimeenoughtoreallyhavetimetothinkaboutit...theycomeinandsayit'stimetodothisandwedoitonthespot...Irarelygetacopyortimetocheckitoutonceitiswritten&signed..

12/6/20139:40AM

I(we)tooktheleadincreatingit

I(we)createditinconsultati...

Itwascreatedbyschoolor...

Don'tremember

I(we)haveneverhada

serv icesplan

0% 20% 40% 60% 80% 100%


I(we)tooktheleadincreatingit

I(we)createditinconsultationwithschooloragencystaffmembers,acasemanagerorotherprofessionals

Itwascreatedbyschooloragencystaffmembers,acasemanagerorotherprofessionalsandI(we)didnothavemuchinputintoit

Don'tremember

I(we)haveneverhadaservicesplan


70/155

7 WehadanIEPunti lmychildturned21.Henowreceivesservicesthroughmyhusband'ssocialsecurityasadisabledchild,andalsohasMedicaidhealthinsurance.HehasacasemanagerthroughWestCentralServices.theymanagehismeds.Hehasbeenworkingwithvocrehabbutasyetonlynothadanyemploymentopportunitiesthrougheither.Hel iveswithuscurrently.Heisnotabletol iveonhisownatthistime.Hedoesnotdrive.Hecanstayalonebutfollowsusaroundwhenwearehome.Ipreparehismeds.Hetakesthemhimself,butIchecktomakesurehedoes.Weareworkingwithpeoplethatweknowinthecommunityandourfamilytogethimout.Hewil lgowithmetorunerrands.Hewil lnotleavethehouseonhisown.

12/6/20139:37AM

8 Ididnothavearoleindevelopingit 12/6/20139:35AM

9 Ibelievethememberrequiringservicesshouldallwaysbeinvolvedinthedevelopmentofanyserviceplan.

12/6/20138:05AM

10 Schoolhasbeenveryhardtogetonboardtodoanythingtohelpourson.Multiplepeoplehavebeeninvolvedbutagainitseemstofeell ikejumpingthroughhoopstogettherightthings.

12/6/20138:01AM

11 Wetriedtohaveinputbuttheydidn'tl istenmuch 12/5/201311:42PM

12 Itiscreatedwiththeinputformallteammembers,thatinc ludestheindividual,family/guardian,providers,staff,vendorsandcasemanager.Inputpriortoameetingisrequested,toexpeditetheactualserviceagreementandtoaddresstheneedsandprovisionsnecessarytobestsupporttheindividual.Casemanagercoordinatestohaveallorthemajorityoftheteammemberspresentatthemeetingandtohavetheirinput,remindstocomepreparedandmightmeetwiththeindividual,andorvariousteammembers(familyand/orguardianinc luded)toassistintheindividuals'inputasservicesandorimprovementsneeded.AftertheserviceAgreementmeeting,CasemanagerwritestheISA,witheveryonceinput,presentsittoguardian.Itisthenpresentedtoguardianforcorrection,approval/orrejection.Usuallyitisapprovedorelseteammeetsagainandtriestoreachanagreementtobestservetheindividual.Itmustbeguardianapproved.Thisisalsofollowedup,by,Casemanager,face-to-facemeetingstoassureservicesatisfaction,qualityanddelivery,aswellasfollowupprogressongoals.Thisalsoallowscasemanagertodetermineifachangeof/inservicesorlevelofservicewouldbeappropriatefortheindividualandmorecosteffective.Seeingandknowingtheindividualperson,allowsforbetterdeterminationofneedstheindividualmighthaveorprogressthatmighthavebeenmade,determinetheappropriatenessofservicesandlevelsthereofnecessaryfortheindividual.

12/5/201310:27PM

13 Notmychinputbutareasignificantrole 12/5/201310:13PM

14 WehadtoworkasafamilytogettheIEPcorrectsincetheschoolsystem'sbiggerinterestwasgettignhimoutoftheschoolnotthequalityoftheeducationhereceived.Everychildespeciallythechildrenwhoneedlargersupportsystemsshouldbeabletohaveteamsforthemthatactuallycareanddotheirjob.SeveralIEPmeetingweattendedattheschoolonlythecasemanagerwasthereandnoneoftheteachers.Weasafamilyfeltsl ightedbythefactthatthereissuchl ittledisregardforthestudentsincetherearetoomanystudentsintheNashuaschoolsystem.Therearetoofewteacherandtoomanystudents.Italsotook3meetingstogetanysortofanswers.

12/5/20138:45PM

15 Throughoutthewholeprocesswefoughtandwerenevergivenalloptionsavailableunti lthreatsoflawyersgettinginvolvedanditdraggedonsolongoursonlostoutandwasdamagedevenmorebythisprocess.

12/5/20138:02PM

16 Notasmanycommunityprogramsforadultswithmentalhealthissues 12/5/20137:37PM

17 Wewereconsulted,butitwascreatedbyacasemanager. 12/5/20135:55PM

18 Notenoughfundingtohaveacompleteplan 12/5/201311:14AM

19 ItisanIEPforschool 12/5/20138:52AM

20 Itwascreatedwiththeinputofthewholeteamthatisinvolvedwithmyson. 12/4/20133:10PM

21 Althoughtheplanisinplace,itisnotalwaysfollowed. 12/4/20132:28PM

22 Throughoutourdaughter'sl i fe,we(family)hasplayedastrongroleincreatingherprograms,butwiththesupportofandinconsultationwithothereducationalandmedicalprofessionals,inc ludingagencystaffmembers.

12/4/20131:38PM

23 awesometeaminc ludesmeandmydaughter 12/4/20139:44AM

24 Itwastotallya"team"effort! 12/4/20132:15AM

25 Serviceplansdonotalwaysseemtoreflectthevastarrayofserviceswhichareprovidedtoassisttheclientwith24/7services..butseemtobefocusonmoresimplegoals:itseemstheinterpretationoftheguidelinesisanewgoalneedstobeaddedtothecareplan,whereoftentimestheactivitiesofdailyl ivingaresti l l amajorchallengeandverytimeconsummingforthec lientandproviders,particularlyasmyc lientagesorwhenthereisanacutehealthissue.

12/3/20139:48PM


71/155

26 IhadalltheideasandtheworksituationssetitwasamatterofcollaboratingwiththeMooreCentertofundtheprogramandtocontinuetomanageittogether.

12/3/20134:27PM

27 Specifically,itwasmadetoappearinearlymeetingsatGatewaysthatourfamilywasthedecision-makingentity.However,whenthefinaldocumentwaspresentedbyGateways,itrepresentedwasteful,meaningless,andunnecessaryservicesGatewayswantedrathertheservicesandneedsindividuallydesignedforthefamily.Thiswasunlikeourexcellentexperiencewithalocalhighschool.

12/3/201312:53PM

28 Decisionsweremadebybothinwhatwouldbeinthebestinterestsofourboys 12/3/201311:51AM

29 Nooptionswerepresentedtous.Wewereassignedservices.Whenourchildreachedschoolagetherewasnochoice.Wewereassignedtoa'behaviorist'whoiscontractedwithmanyschoolsinthearea.Hisservicesandknowledgearesorelyinadequate

12/3/201311:50AM

30 Again,goalsarefrequentlywrittentotherequirements,ratherthantheactualwishesofthec lient. 12/3/201310:41AM

31 Wedevelopserviceplanswiththeteamapproach 12/3/20139:11AM

32 Itwascreatedandthenreviewedwithustochangeormodifyifwewanted.Itwaspresentedtous 12/3/20138:24AM

33 WithSchoolforIEPmultipletimesayearaswedrivetheprogramwithteschoolcoordinators. 12/2/20138:20PM

34 IdeveloptheISAwiththefamilyandorindividualrec ievingservices 12/2/20131:58PM

35 Individualandfamilydidn'thaveastrongvoiceintheprocess 12/2/20131:57PM

36 Thestatedictatesmuchofwhatwecanorcan'tdo.TheserviceplansarebecomingIEP'sforadultsratherthanl ifeplans.Example:Oneofthegoalswehaveisthatwemustcutvegetables3timesaweek.Itmustbeameasurablegoal.SonowIamloggingwhenwecutvegetables.Reallynow!

11/29/20136:06PM

37 Again,servicefromtheWinnisquamSchoolDistric twaspoor.LakesRegionCommunityServiceshasgivenusgreatdirectionandweareateamthatisseeingsuccess!

11/28/20132:37PM

38 PersonalexperiencewithtwosonswithIEP'sinpublic schoolsetting. 11/27/201311:18AM

39 Whilewehadinputinconsultingwiththeschoolinwhatmychildneeded,itdidnotgiveuseverythingthatwasneededandgettingthroughthatprocesscamewithanundueburdenofhiringanIEPadvocateattheexpenseofseveralthousandsofdollars.

11/26/201312:22PM

40 Weweresentdirectlyfromunsatisfactoryearlysupportsandservicestotheschoolscontracted'behaviorspecialist'whoisnotversedinbestpracticetreatmentofchildrenwithautism.Nootheroptionswerepresentedtous.

11/26/20136:34AM

41 Idocareplanswithelders 11/25/20131:58PM

42 Typicalexperiencehasbeenthatfamiliesoftendonothavemuchinputwhenofferedopportunitytohelpcreategoalsandobjectives.Wouldl ikethemtobemoreinvolvedbuttheyoftenfeelthat'swhatvendoragencyarebeingpaidtocreate.

11/25/201311:11AM

43 ThehomehealthagencyprovidesaNursingPlanofCare.Thisaddressesmysister'smedicalneeds.Whereastheareagencypromotessupportsthatallowmysistergreaterindependence,supportsinthecommunity/neighborhood,thatareagoodmatchforherspecific interests,l ikes,etc.(unlikewhensheattendedadayrehabil itation)

11/25/20139:44AM

44 anIEPisonlygoodunti lyourfamilymemberagesout 11/24/20136:48PM

45 WealsosoughttheassistanceofParentInformationCenter(PIC)indevelopingtheIEP. 11/24/20131:30PM

46 Discussionswithagencystaffassistedusbythinkingaboutoursonsgoals.Itwasverynewtousandtheywereextremelyhelpful.

11/24/20138:07AM

47 Dependsontheyear. 11/23/20139:54PM


72/155

48 Itvariesbyschoolandcaseworker.Withmyoldest,inhighschool,wecreatedtheIEPverycollaborativelyanditwasgreat.Onpaper.However,herefusedtodoanythinginitandsoitwasnotimplemented.Ialsohavebeenunabletogethimtocomplywithanyrequestsathomeeither.Sooveryintell igentboydoesnotgraduatehighschool,eventhoughhehasmorethanenoughcreditsandcanachieveanAinhonorsc lasswhen"heisinterested".EventhoughIsawthetrainwreckcoming,beginningin9thgrade,andactivelytriedtostopit;throughschool,mentalhealthprofessionals,primarycaredoctorandthemedicalspecialists(genetic disorderthataffectsheart&lungs)...Ifailed.Sorryjustaslightlyirreleventrant,apparentlyI'mnotoverityet.YoungesttheschooldevelopsIEPandItweakedit.Sincehisissuesaresosevereandnooneknewwhatwaswrong,Ihadnoideaifwhattheywantedwasappropriateornot.Inanycaseitwasn'tworkingandbythetimehegothomehe'dreachedsaturationandwouldspendtherestofthedayinafullblowntantrum.Heisnowhomeschooledandthetantrumsnolongertakeuptheentiretimeheishome.Thebestserviceplanwasduringthepreschoolyears.Wheneastersealsdroppedusandwegotmovedtotheschoolsystemallhelpfulinfostopped.Andschoolsdonotfac il i tateconnectingwithotherparentsinasimilarboat,evenwhenasked.Inmycurrenttownoneparticularwomanfoughtthisandgotthedistric ttoallowspacefor&postaparentsupportgroup.Hugelyhelpful,butbecauseofmyscheduleIcanonlymake~2peryr.

11/23/201311:16AM

49 Itdoesn'tsayletmeuseFCorgetmeajob 11/23/20138:41AM

50 Ihadtotaketheinitiativetoorganizeateam,findtheresources,andmakesurethatdevelopmentalgoalswereset.Ittooknearly5years.

11/23/20137:44AM

51 Theserviceplanismostlyfi l ledoutwhentheSCcomestothehouse,andtheyjustaskustosignit. 11/22/201311:02PM

52 Thelatestplanwasridiculous.Itwasformattedwiththegeneric expectationofwork,jobetcforsomeoneunabletoholdajob.Itl istedlotsoffunctionsthatfelltothefamily.Inshort,i twasjustadocumentthatmadetheareaagencyfeell ikeitwasdoingsomething,wheninreality-thefamilywasdoingallthework.

11/22/201310:21PM

53 WheneverwemeettoprepareanewISPitalwaystakeslongerthanweantic ipate,primarilybecauseweallwantmysistertohaveavoiceintheplan'sdesign.Sittingaroundatablewithexperiencedresourcecoordinatorsanddirectserviceprovidersleadstoastronger,morecomprehensiveplan.

11/22/20133:44PM

54 coordinatordoesitandsendsittometosign 11/22/20132:49PM

55 MySon,Doctors,Gatewayandourselvesdiscussplanandactivatemyson'scareofservices. 11/22/20132:25PM

56 Mostlywe'vebeentoldthisiswhatthereistakeitorleaveit.Ifweneededorwantedanythingoverandaboveitusuallytooklegalactiontogetit.

11/22/20132:11PM

57 Theyinc ludemeandaskmeforinputandrespectmycontributions. 11/22/201311:39AM

58 Ican'tsayIagreewithit.Theytreathimlikeababywhentheyshouldbedoingl ifeskil lswithhim.Notreadingmath.Hewil lneverworkbutheshouldbedoingthingsonhisown.

11/22/201310:35AM

59 astimegoeson,thesetendtoberepetitiveandgearedtobeveryflexible 11/22/201310:21AM

60 Doesnotmatter,it'sneverfollowedandnoresourcestohavethemfollowit 11/22/201310:19AM

61 havehadmysonwithoutanaidwhichisneededfor4monthsoutoftheyearthisshouldtellyousomething

11/22/20139:50AM


73/155

Q18Howsatisfiedareyouwithyourcurrentcareorservicesplan,ifyouhaveone,orplansyouhavehadinthepastif

youdonothaveonenow?Answered:482 Skipped:410

7.05%34

38.17%184

48.96%236

5.81%28

482

2.44

(nolabel)

0 1 2 3

Dissatisfied It'sokay Verysatisfied N/A Total AverageRating

(nolabel)


74/155

Q19Inyourview,whatmakesagoodcareorservicesplan?Orwouldmakeagoodoneifyouhavenothadone?Pleaserate

allthatapply.Answered:602 Skipped:290

1.21%7

16.75%97

79.10%458

2.94%17

579

2.80

0.85%5

15.06%89

82.74%489

1.35%8

591

2.83

2.21%13

29.42%173

67.01%394

1.36%8

588

2.66

0.17%1

13.27%78

85.37%502

1.19%7

588

2.86

1.36%8

26.24%154

71.38%419

1.02%6

587

2.71

0.68%4

10%59

87.80%518

1.53%9

590

2.88

3.10%18

22.76%132

66.90%388

7.24%42

580

2.69

0.34%2

7.90%47

90.59%539

1.18%7

595

2.91

0.33%2

13.04%78

85.12%509

1.51%9

598

2.86


Itisajointeffortbetween

me...Itisflexiblein

howmyor...Itis

rev iewedandupdated...Itcontains

alltheserv icest...

Itcanbechanged

quicklyif...Itlooksatmeormy

familymem...Itcontains

acrisisplanThereisenough

fundingto...Thecase

managerorstaffpers...

0 1 2 3

Notimportant

Important Veryimportant

N/A Total AverageRating

ItisajointeffortbetweenmeandtheschooloragencythatIworkwith

Itisflexibleinhowmyormyfamilymember'sneedsaremet

Itisreviewedandupdatedregularly

ItcontainsalltheservicesthatI/weneed

Itcanbechangedquicklyifneeded

Itlooksatmeormyfamilymemberasawholeperson

Itcontainsacrisisplan

ThereisenoughfundingtopayfortheservicesI/weneed

Thecasemanagerorstaffpersonwhohelpscreatetheplanknowshowthesystemworks


75/155

1 Asimportantasacrisisplanisinplace-thissti l l hasn'thappened29yrs.later.Neitherhasfutureplanninghappenedeither-intheeventthatsomethingweretohappentome.Thereisnofamilythatcancareformyindividualinanemergency.Inaddition,(andIapologizeifthisisnottheplaceinthesurveytosaythis),but-whyisn'ti tthatthereoptionsavailablewhereasacaretakerneedssurgeryandrecovery-thattherearen'tenoughplacesandfundingtosendtheirindividualforthisperiodoftime?Theseplacesneedtohavewheelchairaccessibil i ty,l i ftsystems,hospitalbeds,accesstobathingfacil i ties(tub-showeraccessibil i ty)and24/7care.EvenifonecoulddothisintheirhomewithextracarefromLNA's-thisisn'tasolutionaswecan'tcountonLNA'sshowingupfortheirshifts.Forusfamiliesthatdon'thaveagoodfamilysupportsysteminourfamily-thatdoesn'tworkforuseither.It'snotl ikeeverycaregiverwouldbehavingsurgeryallthetime-butthereneedstobefundingandplacesforourindividualstogoifweareunabletocontinuewiththecaregivingduringthistime.

12/8/20136:20PM

2 areaagenciesworkingtogetherwouldhelpevenmore 12/8/20135:06PM

3 Thecasemanagergetstoknowmyfamilymemberasawholehumanbeing,notjustadisabil i tyPlansanddecisionsaremadejointly

12/7/201311:54AM

4 Itistrulypersoncenteredandnotjusttheavailableprogram(s) 12/7/20134:47AM

5 Crisisresponseiskeyandinneedofimprovementinoursituation,bothatthelocalcommunitymentalhealthcenterlevelandthestatelevel.

12/6/20134:34PM

6 evalbasedonadultson'sprograminMchigan.wehopetogetatleastequalserviceifsonmovestoNH

12/6/20133:42PM

7 Again,ourfamilymemberisfortunateenoughtohaveallofthis,butitsisonlybecauseWEarepayingfor99%ofthecost.Neitherinsurancenotmanagedcareisassisting.

12/6/20132:37PM

8 Mydaughterwithschizoaffectivefeelsthatsocialworkersdonotunderstandmentali l lness,psychiatry.Hasnouseforsocialworkersforthatreason

12/6/201312:23PM

9 Iamunabletorespondduetolackingdirectinvolvement. 12/6/201311:58AM

10 Itallowsthosewhoarec losetotheindividualinneedofhelptobeincontactwiththedoctors. 12/6/201310:43AM

11 Thisisavitalcommunicationtoolforallthesupportindividualsinthecommunitythatareinvolvedinsomeaspectofmybrotherscare,itisvitaltohaveaplanthateveryoneinvolvedisawareofandworkingtowards.Mybrotherhasaveryhardtimecommunicatingthesethingshimselfwhichrequiresallofustoworktogethertoprovidethebestenvironmentpossibleforhimduringhistimewithus

12/6/20139:55AM

12 Professionally,alloftheseaspectsareimportantwhenworkingwithindividualsand/ortheirfamilymemberstowardidentifyingneeds,priortizingneedswithinthefundingavailableandensuringtheimplementationofthecareplan.Itshouldbeanongoingandfluidprocess.

12/6/20138:57AM

13 Helpschildrenbetween18and21yearsofage! 12/6/20138:34AM

14 Agenciesthatprovideservices(stakeholders)needtoknowthereisaplaninplaceandrespect(honor)thatplanonanequalbasis.Theseagenciesorserviceprovidersmustbewil l ingtocommunicatewitheachotherforthebettertreatmentofthememberrequiringservices.

12/6/20138:08AM

15 Dreamon...Onehopes... 12/6/20137:38AM

16 Itinc ludesbestpractices.MyfamilymemberwithprivateinsuranceiseligibleforthesameinhomesupportstheywouldgetiftheyhadMedicaid

12/5/201311:45PM

17 Itallowstofunctionasavalued,productivememberinsociety.Itiswrittentopromotegrowthand,thereby,thepossibil i tyfortheindividualtofunctionasindependentlyaspossible.Itintegratesandiscommunityandhomebased,itisleastrestric tiveenvironment.Itcoverstheindividualsneedsandprotectstheindividuals'basichumanrightstohealth,safety,well-fare,wellbeingandpursuitofhappiness.Itprotectsfromabuse,itisspecific tomeettheindividuals'needs

12/5/201310:39PM

18 Itwouldbegreatiftheareaagencyhadthestafftoprovidetheservice.Alsothestaffneedstobewelltrainedandeducated..itseemstheonlyplacesavailabletousinthepasthadlongwaitl istandsubstandardstaff..

12/5/20139:48PM

19 RoseMeadowfarmandLakeregionscommunitycenterisawesomeandtakeapersonalinterestinmybrothersneeds.

12/5/20139:34PM


76/155

20 Thereisaminimalwaitinlocalemergencyrooms.Minimalimplyinglessthan24hours.AlsoE.R.'swouldbedesignedtoallowapatientincrisistobetreatedwithrespectandnotplacedinisolation.Theroomshouldallowforthel ightingtobealteredandnotconstantlybeturnedon.Theareawherethepatientshouldwaitshouldinc ludeawindowtotheoutdoors(withprotectiveglass),theabil i tyforthepatienttoseeotherpeopleevenifi tsbehindaprotectiveglass,andconsistentreassurancetheyarevaluedandrespected.(Thesesuggestedconditionsarealll istedduetoseveralhorrific E.R.experiencesmyownsonendured.)

12/5/20138:28PM

21 Needhelptofindajob,andhelponthejob.Manytimesservicesarecutorreducedifapersonisconsideredtobedoing"well,"insteadofrealizingthepersonisdoingwellbecauseoftheservices.

12/5/20136:37PM

22 IfeelwehavethisatPathways.I'mnotasconfidentaboutWestCentral. 12/5/20136:18PM

23 Alltheseelementsexistcurrently....pleasedonotchangeit! 12/4/201310:16PM

24 Itsetsrealistic goalsthatcanbemetinthetimeallotted. 12/4/20139:59PM

25 Idon'tl ikedrastic changes 12/4/20139:12PM

26 ThestaffatRiverbendworkedactivelywithmetocreateaserviceplanthatmetmyneeds.Theproblemwasthatonceitwefinishedwithit,i twasfi ledaway,andnotlookedatagainunti lthenextyear.ManchesterMentalHealthdidnotworkactivelywithmetocreateaplan.Thewholeprocessisajoke!

12/4/20137:54PM

27 Alloftheabovestatementsarenecessarytocreateaneffectiveservicesplan. 12/4/20131:41PM

28 Thecheckmarksaboveareforaserviceplanthatwe'vecreatedbuthasnotyetbeenimplemented,becausewe'reWAITING.

12/4/201312:23PM

29 Honestly,Iwantedtorankallofthel isteditemsasVeryImportant.Iamsureifonedidtheresearchonanysinglel ineitem,therewouldbelengthywrittenaccountsofthebenefitstotheindividualbeingserved,thefamily,thelocalcommunity,andthustheStateforeachone.Thecrisisplanisatrivialexample,ifsuchaplanexistsandassuchpreventsacrisisfromhappening,anentirefamily'sfuturecanbesavedwithoutanyoneeverevenrealizingit.

12/4/20139:52AM

30 Ireallydon'tunderstandanythingaboutthefunding.Nooneevermentionedthatfundingwasnotavailable.

12/4/20139:45AM

31 Itisaverycooperativeeffort.Theyl isten! 12/4/20138:46AM

32 thecurrentplanhasnoback-upplan(crisis)asnoresourcesareavailable 12/3/201310:39PM

33 Itislogicalandnotbasedontheschooldayschedule.Itsetsouttocreateanenvironmentthatourlovedonescanbecelebratedandacceptedin,thatusestheirgiftsandskil lsastheyare,ratherthancontinuouslyfocusingonwaystomakethepersonlook,actandfunctionl ikeaneuro-typicalperson.

12/3/20138:49PM

34 actuallyisdone 12/3/20137:17PM

35 thisonedoesn'twork 12/3/20135:26PM

36 WehavehadafamilysituationchangeduringthefirstyearofourplanandtheMooreCenterwasquicktohelpus.ItdidtakequiteawhileforthestatetoagreetothenewplanandtogetusthefundingweneededbuttheMooreCenterwasalsoprettyquickinhelpinguswithfundingsothatMegan'splanwasalmostseamless.

12/3/20134:29PM

37 Notsurewhatismeantbywholeperson.Ifi tmeansinc ludingmedicalissues,thennotimportant.Ifi tmeansmyhome,workandsociall i fe,thenveryimportantobviously.

12/3/20134:11PM

38 Itiscreatedandsupportedwithexpectationsforcontinuedfunctionall i teracylearningandbehavioralsupportforthosethatrequirethistocontinuetobeintegratedintotheircommunitiesandworldofemployment.

12/3/20133:26PM

39 Itshouldbeadministeredbyinsurancehealthcareprofessionalssuchaswell-knownandhighlyregardedhealthinsurancecompanieswithdecadesofpublic experience,notacharityorganizationsuchasGatewaysoperatingwithoutpublic scrutinywithpoorlyinformedemployeesimposingunneededservicesanddenyingmeaningfulones.

12/3/201312:58PM

40 Notsurewhatyoumeanbycrisisplan 12/3/201312:46PM

41 Myexperiencehasbeenthatautismandit'streatmentarenotanareathatisunderstoodbythestaffatCommunityBridges.ThereareevidencebaseddatadrivenproveninterventionsthatareNOTuti l izedbyCommunityBridges.An'ec lectic 'approachisineffectiveinautismtreatment,anditisi l l advisedforthestafftheretorecommendinterventionswhicharenotthebesttreatment.Especiallywhentreatmentistimesensitiveandfamiliesarerelyingonthesefolkstobetrainedprofessionals.Ifoundmyselfeducatingthem.

12/3/201311:56AM


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42 FUNDINGwithoutfightingwithcongress.Automatic fundingshouldhappenYearlyupdatesexceptincaseofcrisis

12/3/201311:53AM

43 Itpaysserviceprovidersinatimelymanner...wouldattractandkeepmoreserviceproviders. 12/3/201311:04AM

44 Poorlywordedquestion.Whowouldn'twantallofthesethings? 12/3/20139:27AM

45 Iwantittoalsoinc ludewhatitimportanttohimandhisc irleofsupportandwhatisimportantforhimandhisc irleofsupport

12/3/20138:26AM

46 Oneoftheissueswithmysonthatwerunintooftenisthathisplanisnotalwaysfollowedbecausethereisnotenoughfunding.Itisahugefrustrationthathecannotalwaysgettheservicesheneedsbecauseofthat.

12/2/20138:02PM

47 ItismyobservationthattheseelementsareimportanttopeopleIsupport 12/2/20134:29PM

48 Theplanmustbetailoredtotheindividualandnotjustaboilerplatetosatisfylegalrequirements. 12/2/20134:27PM

49 Itneedstohavecontinuity. 12/2/20133:28PM

50 Thissurveyisnotallowingmetoenteranyanswers.... 12/2/20131:59PM

51 Casemanagersthatareskil ledandknowledgeable 12/2/20131:59PM

52 Applicationisdoneinatimelymanner-itshouldnottake3-9monthstogetontotheCFIprogramBeingabletocontactOLTCandobtainaresponseinatimelymanner.

12/2/201310:41AM

53 Iamapersonnotanumber. 11/29/20136:08PM

54 Thattheplanberesponsivemoretotheindividual'sownadultneeds,andnotusetheparent'sassupport&residentialresourcesjustbecausetheyareavailable.Parentalsupport,howeverwell-meaning,isnotalwaysinthebestgrowthinterestsoftheadultchild.Ourdaughtercouldhavebecomehealthieremotionally&physicallyhadshebeenwithahomeprovidersoonerinsteadofbeingexpectedbytheareaagencytol ivealone.

11/29/201311:28AM

55 Agoodserviceplanisonewherethefamilyistheultimatedecision-maker,withoutinterferenceandwithmaximumchoicefromalll i fehastooffer.

11/27/201310:57PM

56 Wedon'tsomuchneedaconcretecrisisplan.Yetitisgoodtoknowwhototurntoandthestepsinvolvedinaddressingacrisisshouldonearise.

11/27/20139:02AM

57 Moreresidentialoptionswouldhelpful. 11/25/20132:56PM

58 ItisdirectedbymeandNOTanareaagency. 11/25/201310:47AM

59 Thelaststatementisimportanttomeandmyfamily.Mysisterispartofourfamily.Ourimmediatefamily(me,myhusband,adultsister/c lient)needtofunctionjustl ikeanyotherfamilythatinc ludeswork,rest,play,etc.InordertoaddressHolly'sneedsourl ivesareaffected.WiththecurrentsupportsinplaceweareabletomeettheneedsfortheentirefamilynotjustHolly'sneeds.

11/25/20139:50AM

60 Iamhappywithourplan,services,andagencystaff.Iwouldnotbepleasedifthereweremajorchangestothisrelationshipandfunding.

11/24/20138:09AM

61 ItgetsmeajobandpeopleIcanFCwith 11/23/20138:43AM

62 Allisneeded.Wejustdon'thaveit. 11/23/20136:33AM

63 Notsurewhatyoumeanbya"crisisplan." 11/23/201312:26AM

64 Asnotedbefore-theseplansareuselessdocumentsthatendupsittinginafi lefolderandtakenoutonceayearsothatareaagencypartiescanpointtosomethingthatdemonstratesinvolvementwithafamily.Inreality,moststaffatareaagencieshavenoinvolvementandhavenevermetthefamilies.

11/22/201310:24PM

65 Itisresponsivetotheneedsoftheindividualandrespectstheirrighttochangeandgrow. 11/22/20136:18PM

66 Thereshouldbeonepersonyoucancontactforanswersandchanges/updates,whowil lnotreferyouto12differentpeople/departments/agenciestocall.Alsobesurethereareanswers.Ihavecalledthe800numberandbeentoldthereisnoanswerandwedon'tknowwhoyoushuoldtalkto,orwhentheremightbeananswer

11/22/20134:03PM

67 Seepreviouscomments. 11/22/20133:45PM

68 Notmuchthoughtisputintothegoalsthatareestablishedeachyear.Icreateandfollowthroughwiththehomegoals.Thegoalsduringdayprogramaresogeneric thatnotmuchefforthastobeaffordedthem.Itbothersmethatifagoalisnotmetbytheendoftheyear,youcannotcontinueworkingonthatgoal.Youmustcreateanewgoal.Thatiscounterproductive.

11/22/20133:00PM


78/155

69 Theresjustnotenoughservicesforkids.Itsexhaustingattimes 11/22/20132:51PM

70 Ithinktodaytheserviceplansaretoolong.Ithinkitshouldbeaplanthatismatchedtobudget.tospendtimeplacingintheplanservicesthatthefundingsourcewil lnotpayfordoesnotmakesense,unlessitisc learlyseperatedout.Notknowingwhatacrisismightbeinanon-medicaldmodelIdon'tknowwhatIwouldputinaplan.Havingbackupservicesforsomeonewhomightnotbeabletodelivercriticalserviceswouldbeimportant.AlotofservicesmaybeneededbutsomeareprovidedthroughnatualcommunitysupportsIdon'tknowthattheyallneedtobel istedintheplan,oratleasthowmuchdetailneedstobeintheplan.Rightnowfolkscouldhaveseveralplansandtheyarenotalwayswellconnected.Theyareusuallyperfundingstream.YoucouldhaveoneforDevelopmentaldisabil i ties(ISP),atthesametimeyouhaveaschoolplan(IEP)andaVocationalRehabil itationandEdcuationPlan(IWP).Notsureifthatwil leverychange.Makessenseifsomeoneisfootingthebil l theyneedtoknowwhattheyarepayingfor...manyfamilieslookatthemascontracts.

11/22/20132:21PM

71 Regsneedtobemore"individual"focusedandflexible. 11/22/20132:14PM

72 Thatprovidersaretrainedfortherejobsandareheldaccountable 11/22/20131:46PM

73 Il istedflexibiityandawholistic responseasnotimportantbecausethesestrikemeasjustjargon.Whatmattersisthatmysonissafe,thatIaminvolvedbecauseIknowhimbest,andthatthereisenoughmoney.

11/22/20131:28PM

74 Yoursystemwouldnotacceptacheckmarknexttoeveryquestion,muchasItried. 11/22/201312:59PM

75 ShehashadanISPformanymanyyears 11/22/201312:45PM

76 Itisimportantforthemajorityofthesefolksthatthereisconsistencyintheirplan/staffperson.WhatI'vefoundinthelastyearthatmyadultsonhasreceivedservices,isthatthestaffpersonshiredtoassisthimasneededareveryunderpaidfortheservicestheyprovidewhichleadstosignificantturnoverresultinginchaosforthepersonreceivingservices.Alsoneedbackupplansothatwhenthatstaffpersonisoutunexpectedlythereissomeonetotakeover.

11/22/201312:12PM

77 Theserviceplanshouldcompletlyreflectthepersonatthecenter,whattheirhopes,dreamsandvisionisfortheirl i fe,usingculturallyvaluedanaloguestomaketheplan(ie.at21yearoldshouldbelookingatfurthereducationoremployment-notdaywastingprogramswherepeoplesitaroundandcolororanelderwhowantstopursuehobbiesandinterestsandnotnecessarilybegroupedwithothereldersjustbecausetheyareallold).theserviceplanshouldreflectthelevelofcarethatisneededtosupportthehighestlevelofintegritytothepersonandtheoverallplanshouldbeflexibleandcreative-notaboxtypeofagreementwherethepersonisonlyofferedthisorthat.

11/22/201311:40AM

78 Theonlythingsithasnotprovidedthatisdisappointingis:1.Aservice-dog2.Acabinetwithlocksonthedoorsanddrawers

11/22/201311:23AM

79 Wecurrentlydon'thaveacrisisplan,thatIknowof,butcouldhaveusedonepreviouslywhenacrisistookover2monthstorectify.

11/22/201311:16AM

80 Icheckedofveryimportantforcontainingacrisisplanalthoughmyson'splandoesnothaveone.Iwil laddressthisoversite.Thankyou!

11/22/201310:23AM

81 ithastofactorintheabil i tiesoftheworkerswhichisoftenal imitingfactor. 11/22/201310:22AM

82 Greatplansareonlygoodiffollowed.In10years,ithasneverbeenfollowedaggravatingourson'scondition

11/22/201310:21AM


79/155

Q20Haveyoueverhadabadexperiencewithacareorservicesplan?Pleaserate

allthatapply.Answered:511 Skipped:381

67.08%324

13.25%64

13.87%67

5.80%28

483

1.58

52.61%252

13.15%63

23.59%113

10.65%51

479

1.92

58.00%279

13.51%65

20.37%98

8.11%39

481

1.79

38.48%187

16.87%82

29.01%141

15.64%76

486

2.22

65.96%312

11.42%54

16.07%76

6.55%31

473

1.63

65.24%321

13.41%66

13.41%66

7.93%39

492

1.64

50.22%230

16.81%77

13.76%63

19.21%88

458

2.02

33.95%164

14.91%72

29.81%144

21.33%103

483

2.39

54.96%266

17.98%87

18.60%90

8.47%41

484

1.81

52.16%253

17.32%84

20%97

10.52%51

485

1.89

41.36%201

15.64%76

24.49%119

18.52%90

486

2.20

Ihadminimal

involvemen...Itwasinflexibleinhowmyor...Itwasneverrev iewedor

followedItdidnotincludeall

theserv ic...Itcouldnotbechanged

whenneededItlookedatmeormy

familymem...Itdidnotcontaina

crisisplanTherewasnotenoughfundingto...Thecasemanagerorstaffpers...Ifoundthe

processintimidatingItwasa

constantfighttog...Aneedidentifiedintheserv ic...

0 1 2 3

Neverhappendedtome

Hashappenedonce

Hashappenedafewtimes

Oftenhappens

Total AverageRating

Ihadminimalinvolvementincreatingtheplan

Itwasinflexibleinhowmyormyfamilymember'sneedsare/weremet

Itwasneverreviewedorfollowed

Itdidnotinc ludealltheservicesthatI/weneed

Itcouldnotbechangedwhenneeded

Itlookedatmeormyfamilymemberasanumber,notaperson

Itdidnotcontainacrisisplan

TherewasnotenoughfundingtopayfortheservicesI/weneed

Thecasemanagerorstaffpersonwhohelpedcreatetheplandidnotknowhowthesystemworks

Ifoundtheprocessintimidating

Itwasaconstantfighttogettherightservices


80/155

50.41%243

18.05%87

20.12%97

11.41%55

482

1.93


1 Inadditiontolastquestion'scomment-thereneedstobemoreplacesinthecommunityforoutofhomerespiteandmorefundingtobeabletomakethathappen....forthoseinwheelchairswhoneed24/7care.Itwasreallynicewhenwecoulduti l izeCrotchedMountainmanyyearsago...ofcourse,Idon'tbelievethatwouldbeevenanoptionatthispointandtimebecausemythenchild,isnowa29yoadult.

12/8/20137:14PM

2 thingschangefromthestateandareNOTCOMMUNICATEDproperlyfromtheareaagenciestotheproviders

12/8/20135:08PM

3 Stil l waitingforatherapist. 12/6/20135:36PM

4 WearepleasedwiththecareundertheManchesterMentalHealthCenter,howeverwehadverydifferentexperiences,bothnegativewhenoursonwasundertheNashuaandDerrymentalhealthagencies.

12/6/20134:37PM

5 Myfamilymemberwasgoingtohavetogomorethan60milesawayinadifferentStateforresidentialtreatment.Thisremovesthepersonfromthesupportsinthecommunityandfamily.Thesesupportsarecriticaltothatpersonwhenoutpatientservicesstartandultimatelywhenthepersonreturnstoajoborschool.Thiswasunacceptable.WefoundanexcellentresidentialtreatmentcenterhereinNH,butitisnotcovered.Ourfamilymemberpartic ipatesinthein-Stateoutpatienttreatmentnowandhasthesupportoffamiliy,friends,andthecommunitywherehehasl ivedhiswholel ife.

12/6/20132:43PM

6 onlyhadacasemanagerearlyinheri l lness.Nocasemanagersince. 12/6/201312:24PM

7 noplanineffectthatIamawareofformyson,thoughheismonitoredandhismedicationisprovidedthroughMMH

12/6/201311:37AM

8 Thisareaofquestioningishardtorateontheabovescale.Idofeelthoughthatfundingisoftenanissueinwhatcanbedone.Financesarealwaysdiscussedinwhatplansaremade,whichisn'talwaysabadthingifappropriatetreatmentcanbedonecheaperitshouldbe,butsometimesknowingthatfundingisavailableforthosecasesthathavenotrespondedtothealternatives.

12/6/20139:46AM

9 Withpeopleentering&leavingmylocalmentalhealthc linic /centerconstantly,itishardtokeepsomeservicessteady&methodstodoservicesareconstantlychanging..Ihadajobcoach,thenshejustdisappeared&Ihaven'theardbackdespiteaphonecallleavingamessagetothatgroupofpeopleatmyMenalhealthagency

12/6/20139:45AM

10 Wehadagreatplanwhenmysonwasinschoolupunti lage21.Nowweareprettymuchonourownintermsofaplan.WesoughtoutWestCentral&vocrehab.Vocrehabappointmentsare6weeksapartandcanonlyworkononegoalatatime.Sofartheyhavefoundoutthatmysonhasnointerests.Wehaveayoungcasemanagerwhovisitswithmysononceaweek.Otherthanthat,thereisnoplanthatIcantell.

12/6/20139:42AM

11 Ihavenotbeenanactivepartic ipantinaplan. 12/6/20139:37AM

12 Doesnotapplytoproviders 12/6/20139:00AM

13 Mychild'sserviceplanhasneverbeenimplemented.wegetnohelpfromSMSevenafterhavingmeetingatmyhomeafterneedingtofightforanappointment...Ourworkerleft6monthsagowithawholepageofthingsshewasgoingtoworkonforusandhaven'theardawordsince.

12/6/20138:36AM

14 IhaveseencareplansnotworkwellforallkindsofreasonsbutoverallIhaveseenthattheyworkverywellforamajorityofpeople.

12/6/20138:19AM

15 Mysisterhasaguardian,soIdonotgetinc ludedinserviceplanningtypically.Although,ifIasktheyarealwayswil l ingtoinc ludeme.Theyjustdonotthinktoletmeknowwhenthesethingsarebeingreviewed/updated.Thereareinsuffic ientresources/servicesforpeoplewithmentalhealthdisabil i ties.

12/6/20136:20AM

16 Ihavebeenscolded(bull ied)byteamleadersfortryingtoadvocateformychild 12/5/201311:48PM

17 thecasemanageristryingtogethimtocometotheappointment. 12/5/201311:16PM

18 Theabovearethingsthathaveoccurredwhilethe,bythestatedesignatedAAdidprovidetheservices,undertheirdayprogram*(whenmoreconfl ic tofinterestispresent,weleaveopeningforlessprotection,abuseofcertainprivi leges,lackinservicesandsuch).Sincemovingtoanoutsidevendor,thereisgreatersatisfaction,bettercommunication,betteraccess,lessissues,i l luminationofconfl ic tofinterest,bettercooperationandaccommodation,wellimprovedserviceoverall.

12/5/201310:48PM

Aneedidentifiedintheserviceplanwasnotavailablelocally


81/155

19 Planwascreatedbutthestaffturnoverratedidnothelpwithcarryover..Longperiodsoftimewouldpasswithnoreplacementstaff

12/5/20139:50PM

20 Theydon'tknowwhatservicesareavailableandsomepartsofthestatehavegoodprogramsothershavenone!!Needtransitionorgrouphomeoptions

12/5/20137:41PM

21 Seepreviousnote. 12/5/20136:39PM

22 Whenmydaughter'sIEPupdatewaspresentedtothespecialeducationsteeringcommitteeatHoll isBrooklineHighschool,theresponsewas"Thiskidjustneedsandneedsandneeds"andrequestedservicesweredenied.Mydaughterendedupleavingtheschooldistric tandgraduatedfromhighschoolinanothertown8yearslaterattheageof25.

12/5/20136:25PM

23 IdontknowifIevenhaveaserviceplan.Thisissomethingthathasnotbeenmadec leartome. 12/5/20136:18PM

24 Ihaveseenmanyserviceplanscreatedandareaagenciesarethoroughintheirrequestsforrehabil itativeandsupportedl ivinggoalsforeachpersonbasedontheirabil i ties.

12/5/201312:04PM

25 notinvolvedwithNHMedicaidLong-TermProgram 12/5/201310:56AM

26 Thiswasatnewfoundschooldistric t.Theydonotofferenoughassistanceforeveryspecialneed.Quiteoftentheirc lassroomaidshaveacupofcoffeeintheirhandandweren'tavailabletointerceptabadbehavior.Jobtrainingwasn'tavailable,summerschoolhourswerethreehoursfourdaysaweekforIthinkfiveweeks.Justenoughtocompletelythrowanautisticspersonofaschedule.Andcausechaos.LuckilytheycurrentlypayforhimtoattendSpauldingyouthcenterwhichisfabulous!Mycaseworkerhelpedtremendouslywiththis.

12/4/20139:24PM

27 Ifyou'reunabletohelppeoplewiththebiggestbarriersinmovingforwardthattheyarefac ingit'sawasteoftime.Formethefollowingbarrierswerenotaddressed:lackoftransportation,employmentdiscrimination,helpingmewithpaperwork.

12/4/20137:59PM

28 NA 12/4/20133:23PM

29 Ifeelthatourvoiceisoftenlostbecausewhatweneedisnotavailableorisexpensive.Thelackofacrisisplandrivesmewild...myfamilymemberisaninsulindependentdiabetic andIcannottellyouhowmanytimesIhavehadtoleaveworkinthemiddleofthedaytodothenooninsulinrunbecauseourregularmentorisoutsickoronvacationandthereisnoreplacementforhimqualifiedtogiveashot.

12/4/20132:32PM

30 Aschoolsuperintendantbrushedasidemyconcernsregardingmyfosterson'sIEPplannotbeinguti l ized.ThesupintendantdidnotagreethathadthetwoteachersinvolvedfollowedtheIEPplanthatmyfosterson'sreactiontotheteachersverbalandintimidatingbehaviorswouldhavebeendifferentandnotresultedinoutofschoolsuspension.Thesuperenttendanalsowouldnotconsiderprovidingadifferentconsequencetomyfosterson.Myfostersonlovednotgoingtoschool,andsawitasareward.Everynightbeforeschoolmyfostersonwouldaskmeifhehadtogoschoolthenextday,andIsaidyes.EverymorninghewouldaskagainandIsaidyes.Givinghimathreedayoutofschoolsuspensionwasaplusnotaminusasfarasmyfostersonwasconcerned.WhatisthepointofanIEPplanifi tisnotgoingtobefollowedbytheteachersorupheldbythesuperintendant?

12/4/201312:01PM

31 Thefirsttimethoughwas,ofcourse,intimidating.Withtheamountofchange,allthenewpeople,I'mnotsurehowthiscouldorshouldbeavoided.Viathebenefitof20-20hindsight,itcouldhavebeenoverwhelminganditwasn'tbecausetheexistingprocessworkssoverywell.

12/4/20139:55AM

32 Ifstateweretomakeasitevisittheywouldsayfarmsteadhadadefic iencyifJess'sroomsmelledl ikeurinebuthersisauniquecasewhereshehassuchnoncooperativebehaviorandisabiggirlyoucannotgethertocooperatewithhygiene.Farmsteadshasgonetoincrediblelengthstoaddresshealthissuesandisinnowayatfault.Itisimportanttotakeindividualcasesandseethecontextandnotjusttherules.farmsteadandpathwayshavemadegreatimprovementsinJesshealthandsafetyissuesbutitisverychallenging.

12/4/20139:53AM

33 Someofthesequestionsaredifficulttoanswer.IonlyansweredtheonesIfeltcomfortablewith. 12/4/20139:48AM

34 N/A 12/4/20139:31AM

35 Theagencyhasbeengreat,suchadifferencefromtheschoolyearswhichweresostressful.Itwentfrombattl ingwiththeschooldistric t,totheagencyallowingustotalcontrolofwhathappensdailyforoursonandsupportwitheverychallengeornewideawehave,suchanenormousdifferenceandsuchablessing!,!

12/4/20138:07AM

36 Notinc ludedinalldevelopmentofdayprogramandinflexiablityandnotcaringwhatthefamilyorindividualneeded

12/3/20137:19PM

37 thisonedoesn'twork 12/3/20135:27PM


82/155

38 AsIsaidpreviously,wehadsomewaitl istissuesbutthecommunicationbetweentheMooreCenterandmyfamilywasopenthewholetime.

12/3/20134:31PM

39 Ireallycan'tanswerallofthese.Withintheconfinesofbudgetaryconstraintsandmyenergytomakethingshappen,alliswell.

12/3/20134:25PM

40 No 12/3/20133:20PM

41 Myonlybadexperiencehasbeenyearsofadvocacywiththestatetokeeptheservicesintact-fightingandtestifyingeverytimealegislatorpresentsabil l thatcouldpossiblyharmtheservicesthatmysonandourfamilyrelyon.At60yearsold,Iamgettingtired.

12/3/20131:57PM

42 EverybadexperiencewastheresultoftheunprofessionalstaffatGatewaystreatingusasifweshouldbegratefultothempersonallyforreceivingthefundsourdisabledfamilymemberqualifiedforfromMedicaidbyvirtueofpermanentandtotaldisabil i ty.Gatewaysbehavedasifi tweretheirownfundstodistributeastheysawfit.Theirunprofessionalpartic ipationdidnotmeritthelargepercentageofMedicaidfundstheytookoffthetopforadministration.Gatewayswascondescendingandbull iedus.Fortunately,afterlearningwhatGatewaysactuallydid,invirtuallyappropriatingtheentireMedicaidsystemandpursestringsfortheirown,andtryingtokeepusinthedarkconcerningtherelevantstateandfederallaws,wehadthepersonalfundsavailabletorejectanyinvolvementwiththem.Theyshouldbeashamedoftheirbehavior.

12/3/20131:09PM

43 TheareaagencyinConcordwouldnotallowustospendourbudgetinanautismtreatmentprogramofourchoice.Wehadtofightandfightandfighttohavethispermitted.Alotofvaluabletimeinmyson'sl i fewasspentwithunqualifiedpersonnelwhenqualifiedproviderswereavailablearoundthecorner.

12/3/201312:00PM

44 Idofeelweareunderfundedforthe24/7caremysonwil lneedfortherestofhisl i fe.Hewil lneedtoalwaysbeinahomewithfamilyoragrouphomeatsomepoint.Ustakingcareofhimsavesthestatemegabucksyetwecontinuetofightforfundingyearafteryear

12/3/201311:57AM

45 NeedfundingforRoseMeadow 12/3/20139:46AM

46 Iftheserviceforaneedwasnotavailableitwasnotidentifiedintheplan 12/2/20132:00PM

47 Iamnotabletochecktheboxesinthissurvey,itisnotrecordingwhatIamchecking 12/2/20131:59PM

48 AnissueneverreviewedorfollowedupuponisaHUGEissue,notonlywiththeOLTC,butalsowithsomecasemanagers.

12/2/201310:44AM

49 Donothaveaccesstoappropriateservicesthatwouldbenefitmyson.WeusedtobeabletohaveweeklySpeechTherapyandOccupationalTherapyfromprovidersweselectedbutnowthatwemustuseproviderswhoacceptMedicaid,henolongerreceivestheseservicesbecausetherearen'tenoughproviderswhoacceptMedicaid.Thequalityandconsistencyoftheservicesheusedtoreceivewerewonderfulandwesawprogress.Hedoesreceivetheseservicesatschoolbuttheyarenotthesamequalityorconsistencywhichiskeytomysonmakingimprovement.

12/2/201310:21AM

50 onepersonseldomcheckstoseehowthingsaregoing 11/30/20131:25PM

51 TheonlytimeIrememberproblemswasintheearlyyearswhenthekidswerel ittle.Someofthiswasontheschooldistric tnottell ingusaboutotherservicesweneededorcoulduseandsomeofitwasourperception.Whenyournewatthisstuffeverythingisdaunting.Aswebecameeducatedaboutthesystemwebecamebetteradvocates.Beingbetteradvocatesenhancedourrelationshipswiththeschooldistric tandAreaAgency,whichledtomorecomprehensiveplansandcare.

11/29/20136:22PM

52 Casemanager/supportbrokersstaffturnoverscreatehavocandhaveoftenbeenundertrainedorhavebeennotagoodfitforthejobatall.i tisveryfrustratingwhenweknowmorethanoursupportbrokerdoes.Itfeelsl ikethereisnosupportatallandwehavel ittleconfidencethattheywouldbeabletohelpifweneededit.Ihavegonetosupervisorsinthepastwhenthishashappened.

11/29/20131:32PM

53 See#19 11/29/201311:33AM

54 Again,theWinnisquamSchoolDistric tSpecialEducationDepartmentdidnotmeetmydaughter'sneeds.Therewereteachersalongthewaythatmadesoesuccessfulattempts,butinhighschool,theteamdownplayedherdisabil i tiesanddidnotformatransitionplanunti lshewas18yearsoldandIaskedaboutit.Mydaughter'sfatherraisedherasasingleparentfor14yearsafterhermotherdiedandwasoverwhelmed.WhenIcameintothepictureandstartedaskingquestionsaboutherservices,theywerebegrudginglyprovided,butitwasalreadyverylateinthegame.Asaresult,shespenttimeonthewaitl istandherforwardprogressstalled.WhenweconnectedwithLakesRegionCommunityServices,hersituationbegantoimprove.Nowweareinvolvedwithself-directedservicesandfeelthatwehaveexcellentsupport.

11/28/20132:44PM

55 Massagetherapy 11/28/20135:37AM


83/155

56 Again,wehaveamentorthatiswonderful-butIfearthatwewon'tkeepherduetotheinabil itytorewardhergreatcontributions.Thesefolksdon'tgetinsuranceorretirement-allwecandoisgivethemsomesortinincreaseinsalary.traininganewpersonisjustNOTinthebestinterestofanyone.

11/27/20136:07PM

57 Personal:Havenothadaserviceplaninadultsystem,justIEP'sinschool. 11/27/201311:20AM

58 Whenmysonturned3,wedevelopedhisfirstIEP.Soonafter,wemovedtoanothertownwithinthestate.Aftergoingthroughtheprocessinournewhome,Irealizedthattheserviceshewasofferedinitiallywerecompletelyinadequate.

11/27/20139:05AM

59 Whilewehadtheabil i tytoprovideinputintheIEPprocessandalsopushedtoaddressissueswithitasschoolyearprogressed,l i ttletonothingwasdonetoaddressitinameaningfulmanner.

11/26/201312:26PM

60 Thedirectorofouragencyadultserviceswasincrediblydifficult.Wehadtofightherorgoabovehertogetwhatweneededforoursons.

11/26/201311:58AM

61 ioncewenttwomonthswithoutservicebecausemyspenddownhadgoneoverthel imit. 11/26/201311:51AM

62 Whentherewasacrisisthesystemwasresponsivebuttherewasno"plan"priortothecrisis. 11/26/201310:54AM

63 Someprofessionalservicesarenotreadilyavailableinourarea 11/26/20138:09AM

64 WhenIwaswithadifferentmanagementcompany,thecasemanagerNEVERcameanddiscussedany-thingwithmyhusband&me.Healwaystalkedthetalk,butdidabsolutelynothingmorethanthebarestminimumforus.Whenweactuallydiscoveredmisconductbyourassistanceprovider,hecontactedthecompanymanagerandthey"investigateditthemselves,"spoketotheproviderbeforespeakingtousandthensweptitunderthetableinsteadofnotifyingtheproperauthorities.Webothgotadifferentcasemanager,partiallybecausehedidn'twnttofaceus!Andwewerediscustedwithhim.

11/25/20139:15PM

65 thispagewontletmeansweranyofthequestions 11/25/20138:21PM

66 Don'tneedtheareaagency.Plancanbedevelopedbyme,healthcareprovidersandschoolstaffwithoutmiddleman.

11/25/201310:50AM

67 Fortunately,Ihavealwaysworkedintheareaagencysystem.Ibelievewithoutthisexperiencemysisterwouldnotbewheresheistoday.Mygrandparentswentyearswithouthavinganareaagencyservicecoordinator.TheirbeliefwastoallowsomeoneelsethehelpbecauseourfamilycouldprovideforallofHolly'sneeds.Thisprovedtobedifficultbecauseasmygrandparentsagedtheirpersonalneedsincreased.Wedidnothavethesupportfromourrelatives(bioparents.)Atonepoint,myhusbandandIprovidedallpersonalcareformysisterandbothgrandparents.Thetippingpointwaswhenmysisterreceivedservicecoordinationfromtheworkshopwheresheattendedandwasfinanciallyexploited.

11/25/20139:57AM

68 ThebudgetthatisdeterminedbytheNHlegislatureisthelargestdeterminingfactorastohowadequatelytheareaagenciescanmeettheneedsoftheindividualstheyserve.Whilewehavehadto'fight'forservicesit'sbecausetheNHlegislaturedoesnotallocateadequatefunding…forcesindividualsonwaitl ists.NHMedicaiddoesnotABAservices.Soagainthisquestionissomewhatinappropriateandmaysuggeststofolksthatanychallengestheyhavehadisthesoleresponsibil i tyoftheareaagencies.Wehaveneverhadacrisissituation,butifwedidwedohaveanumbertocallapersonfromourareaagencytogetanimmediateresponse/supportoutsideofthenormalbusinesshours.

11/25/20139:40AM

69 MyfamilyhasonlybeenresidentsofNHfor4years.WhenwelivedinRhodeIsland,wealsohadprivateprimaryinsuranceandmysonwascoveredbytheKatieBeckettwaiver.Wehadservicesformysonwhereastaffpersoncameouttothehouse2-3timesperweekanddidhomeworkwithmyson,helpedwithADLs,chores,tookhimonsocialoutings,etc.IhavenothadthosetypesofservicesformysoninNH.IwasalwaystoldbyourareaagencythatthosetypesofserviceswereonlyavailableforadultsANDthattherewasawaitingl isttogetthosetypesofservicesandtheremaynotbemoneyavailabletopayfortheservices.IamnotsureifthisisinfactthecaseinNHbutIfeelasthoughIhadbetterservicesformychildwhenwelivedinRhodeIsland.

11/24/20131:38PM

70 Can'tsayenoughgoodthingsaboutcommunitypartners. 11/24/20138:10AM

71 Itiscalled"selfdirected"butthenameisnotaccurate. 11/23/201311:20PM


84/155

72 FirstfewyearsIdidn'tknowwhatweneeded,sodidnotask.Myassumptionhadbeenthatiftheyknewwhatwasneededtheywouldtellmeandiftheycouldnotprovideittheywouldtellmewhy.Iftherewerealternativeoptionstheydidnotalertme.Ihavenoideaifschoolhadafundingissue.Andsinceifyoucan'tattendfunctionswhereparentscongregate,can'tgoonfieldtrips,can'tgotoafterschoolactivitiesbecausetheyalwaysservethingsyourchildcan'teat,thenyoudonothearfromtheotherparentsaboutthelesscommonoptionsthatmighthavebeenavailable.ServicesIneededwerebeyondthescopeoftheschool,sincetheyhappenedathome.After3yearsofrequestsyoungestwasaddedtoPASSprogramandtheydidassignsomeonetomeetwithus(parents)andcometothehouse.Shewashelpful,after2yearsshedidrecommendhomeschoolinghim(offtherecord).AtthetimeIwasalreadyhomeschoolingoldesttwo.Theoldestwastoosmarttogethelpingradeschool,andmiddlechildwasandisthrivingasahomeschooler,soIneverbotheredtosendhertoschool.Idon'tknowwhatacrisisplanis,inthiscontextis.Youngestnevermelteddownatschool,simplyshutdown.Oldestchildhadamedicalcrisisplanwithnurse,butnotonIEP.Ingradeschoolittookactiveeffortonmyparttogettheplantweakedti l l i tworked.Itwouldtaketi l l Aprilbeforehebegantoprogressandtheneverysingleyearitwouldbeabrandnewteamthatwoulddismissmyconcerns,ignorewhatworkedlastyearanduse"theirprogram"andsoitbeganagain.InhighschoolittookmonthstorealizethattheIEPwasn'tbeingfollowedorimplemented.NoonebotheredtotellmethatNathanwasnotimplementinganyofthesupportsprovided.When18monthsin(andevery3monthsfromthenon)Iaskedforatruantofficertheteamwouldsaythat'salastresortletsdox,y,orz.Sowedidandeveryquarter1weekbeforemarksc losetheboywouldhabdinenoughworktogofromDorFtoA,BorCandtheywouldassumeitwasworking.Atthefinalmeeting6weeksbeforegraduationtheybringintheTruantofficerandhesaysIwishyou'dbroughtmein2yrsago.Atthatpointtheboystopsshowingupaltogether.Inallcases(bothchildren)inthesemtgstherewasneveranyantipathy,justsimplydidn'tbelieveme.Soasthemonthsmarchontheplangetsreworked.Soomuchwastedtimeandenergy.

11/23/201311:54AM

73 MysonandfamilyareveryionvolvedincreatingtehServiceAgreement. 11/23/20138:09AM

74 oncewestartedwithAngelourl i fechangedforthebetter....shecaresandworkshardforthewholefamily

11/23/20137:56AM

75 BeenworkingwithIEPonlybymyself. 11/23/20136:35AM

76 Itisnofaultofthecasemanagerwhencertainservicescouldnotbefunded.Itwasthatthe"plan"wouldnotallowpaymentforaspecific need.

11/22/201310:39PM

77 Iwouldn'tsaytherewasevera"fight"buttheserviceswereverybasic,thecasemanagerdidnotl istentowhattheindividualwantedandtheservicesweretokenofferingscomparedtoneeds.

11/22/20133:48PM

78 Thenarrativeserviceplanwasoftenjustcutandpastedintothenewserviceplan.Somecasemanagersdonottakethetimetogettoknowthec lient.Oftentheonce-a-monthmeetingisjustanemailsenttotheprovidersaying"how'sitgoing?"

11/22/20133:08PM

79 Theschoolplancannevermeethisneedsbecauseofhismultiplediagnosisthereisn'tafac il i tyorprogramthatcoversthemall.Theplanthroughtheareaagencycannotprovidetheservicesneededbecausemostoftheprogramsareonlyforadults.Thementalhealthplancanonlycoverwhatisavailablethroughtheirservices.Itwouldbegoodtohavesomeonetocoordinatealltheseplansaswellashismedicalteamtoidentifyhisneedsandcomeupwithacohesiveplan.

11/22/20132:57PM

80 respitepoolwouldbegreatlyappreciatedbutthatdoesn'texist 11/22/20132:54PM

81 WehavehadmostlysuccesswithourplansinLTSSDDservicesbecausewehavebeenfortunateenoughtoself-direct.MyIEPexperienceswereverydifferentintheschoolsystem.

11/22/20132:24PM

82 I'vebeenlefttoeitherhandlethingsonmyownornotgiventhesupportanddirectionthatI'veneeded.

11/22/20132:16PM

83 Theneedsthatwerenotaddressedwerepre-vocationalreadiness(VRisaninflexibleandunhelpfulpartnerinyouthtransision.)The"fight"forserviceswasnotattheareaagencybutattheschooldistric t--Wealwayshadtopushthedistric ttodomore.

11/22/20131:32PM

84 Again,yoursystemwouldnotallowmetoanswerallquestions,muchasItried.Bytheway,allmyanswersarethatitneverhappenedtome.

11/22/20131:08PM

85 Problemsinstaffing. 11/22/20131:02PM

86 Thesecondquestionthatstates"Itwasaconstantfighttogettherightservices."Iwoulddefinitelynotusethewordfight.ItwasmoreinhowIapproachedandhowIkeptapproaching,askingforwhatIneededindifferentways.Againtheservicesthatarebil lable,needtoinc ludeadditionalservicesthatwil lassistautistic personsmoreinthesocialaspectofl i feandinl ivingahealthyl ifestyle.

11/22/201312:20PM


85/155

87 Itcontainedacrisisplanthatwasridiculous."Ifyoufeelyourselfgettingagitatedtrytodosomedeepbreathingorl istentomusic."Thiswhenmysonwasbeinghospitalizedforamentali l lnessepisodeforthe4thtimeinathreemonthperiod.Healsohasdevelopmentaldisabil i tiesanditwasc learafterthesecondtimethat"deepbreathing....."wasnotgoingtoworknorwashecapableofaccessingthatskil linatimeofcrisis.Butaslongashesignedtherightformsandsaidheunderstoodhiscrisisplanhewasletgo.Onlytoreturnagain,andagain,and.....

11/22/201312:20PM

88 Sometimestheagenciesagendawastryingtotrumptheperson'sagendasothenumberofagencypersonnelaroundthetableoutnumberedthedirectcareteam.Powerstruggles.

11/22/201311:43AM

89 StaffingofaDSPwaschallenginginthebeginningbecausewearelocatedinamoreruralarea. 11/22/201311:26AM

90 Wewereonawaitforearlyinterventionserviceswhenmydaughterwasatoddler,butnotforverylong. 11/22/201311:26AM

91 Tobehonest,wedidn'tknowalltheservicesweneededandtheAreaAgencypreferstokeepyouinthedarktowhat'savailableandhelpful.We'velearnedthemostfromotherfamiliesandparentswithchildrenwithdevelopmentalneedsandfromtheyearlyconferencesheldatAttitash&MtWashington.

11/22/201311:22AM

92 Inthepasttherehavebeenmanycontradictionsregardingfunding,especiallywherewearetoldsomethingthatlaterisdifferent.

11/22/201311:16AM

93 RobinHil lFarmisanexcellentplacementforourfamilymember. 11/22/201311:02AM

94 Ourareaagencydoesagreatjobonthisissue 11/22/201310:58AM

95 Thispagepertainstoaformerareaagency.IwouldsayIwasnotintimidated,butratherfrustratedandangeredasIknewwhatmyadultsonrequired.Ihadthebenefitofleadershiptraining(firstgraduatingclass),weeklongPLANworkshop,TASHandparentmeetings,difficultandchallengingpublic schoolIEPmeetingsresultinginsuccessfullynavigatingmysonthroughgraduationofhislocalhighschool.Iwasexperienced.MysonandIchangedareaagency.

11/22/201310:40AM

96 Myfamilymemberwasonthewaitl istforservicesfor12yearsandwebelievedwecouldn'tdoanythingaboutit.Wehadanawfultimegettinganyservicesatallduringthattime.Weareeducatedaboutourchoicesnowandadvocateforwhatwefeelisbestforourfamilymember.

11/22/201310:19AM


86/155

45.84% 259

10.44% 59

32.21% 182

11.50% 65

Q21Doesyourservicesplanhaveanannual,individualizedbudgetorsometypeofannualservicesaccount?(Ordiditif

youdonothaveaplannow?)Answered:565 Skipped:327

Total 565

Yes

No

Notsure

Notapplicable

0% 20% 40% 60% 80% 100%


Yes

No

Notsure

Notapplicable


87/155

21.59% 57

2.65% 7

3.03% 8

Q22Whatdoyouestimatetheannualbudgetisfortheservicesinyourplan?(Or

fortheannualservicesyoureceivethroughMedicaid.)Answered:264 Skipped:628

I'mnotsure

$5,000orlessperyear

$5,001-$10,00

0peryear

$10,001-$20,0

00peryear

$20,001-$30,0

00peryear

$30,001-$40,0

00peryear

$40,001-$50,0

00peryear

$50,001-$60,0

00peryear

$60,001-$70,0

00peryear

$70,001-$80,0

00peryear

$80,001-$90,0

00peryear

$90,001-$100,

000peryear

Morethan$100,000per

year

Notapplicable

0% 20% 40% 60% 80% 100%


I'mnotsure

$5,000orlessperyear

$5,001-$10,000peryear


88/155

10.98% 29

14.39% 38

8.33% 22

8.33% 22

9.09% 24

4.92% 13

3.03% 8

1.89% 5

2.65% 7

6.44% 17

2.65% 7

Total 264

# Feelfreetocommentifyouwouldlike Date

1 Althoughthisseemslikealotofmoney-itdoesn'tmeettheneedsoftheindividualorthosecaringfortheirindividual.IncomparisontowhatitwouldcosttohousetheseindividualsinprivatehomesinthecommunityORinafac il i tyvs.athomewesti l l savethestateaLOTofmoney-helpusoutbybeingabletoofferhigherwagesforthosewhoworkwithindividualsrequiringmorecarethanthosewhodon't(walkingvs.wheelchairandoftenseverelydevelopmentallydisadvantaged)sothatpeoplewil lwanttoworkandstayonwiththeseindividuals.Giveusmorerespitefunding.Treatparentswhohavetheiradultindividualsathomethewaytheprovidersinthecommunity(privatehomes,grouphomes)aretreatedcompensationwise.Iforone,amunabletowork.I'masinglemomandmyadultrequires24/7careforwhichIcanNOTcountonLNA's.Ineedtosleepwhilehe'satdayprogrammingandthemostsleepIgetatonetimeis4hrsmaxandthat'swhileheattendsdayprogram.I'mgettingolderandIfeelit.IalsofeelresentmentofhowIwil l beofretirementage-havenosocialsecuritybenefitstodrawfrom,havenoIRA'stodrawfrom(becauseIcan'taffordtocontributemoneytoone)becauseIalreadyliveoffthesystemandgetnothingmonetarilytocareformyindividual.Putfamiliesl ikemine,outofsuchseverepoverty.Don'tpenalizethosewho'vesteppeduptotheplate...wedidn'taskforoursituationtobel ikeitis.

12/8/20137:42PM

2 Thisisjustforthecommunitysupportbudget 12/8/201311:13AM

3 Forthetotaloftheservicesprovided.Medicaidalsoreceives$for$Federalmoniestomatchtheirfundings,asIunderstandit.Never-the-less,theseservicesnecessary,theamountsspendforthisindividualwouldreachafargreaterlevelofcost,ifthisindividualweretobeinaninstitution,wheretheindividualwouldregressandattodayslevelofcostofcarethisapproximatedannualbudgetisafractionofwhatitwouldcostunderadifferentsetting.Again,theaboveaskedfortheMedicaid$amount,notforthe$by$match.

12/5/201310:54PM

4 Notrealisticallysure.Butitisexpensive 12/5/201310:19PM

5 Aswithanymedicalcareallthecostsshouldbeknownbyprovidersandrecipients.I'veneverbeentoldthecostofservicesprovided.Althoughsomeservicesareexpensive,theycanresultinlesscostsinthefuture.

12/5/20136:43PM

6 IknowmyIHSbudgetbutnotthemedicaidl imitsoranyLimitsoftheIEP. 12/5/20131:49PM

7 Thebudgetwasalwaysasecret,whenwewerelookingforadultservicesweweretoldtolookatalltheseplacesandthenwhenwepickedone,itwasnotthemostfavorabletotheareaagencyatfirst.That'sl ikeasalesmaninacarparkinglottopickacaryoul ikeandthenafteryoupickittellyouitistooexpensiveforyoubecauseyoudidn'tknowyourbudget.Veryfrustrating.Intheendwearehappybuttheinitialexperiencewasdaunting

12/4/20139:34PM

8 Idonotunderstandhowmydaughtersbudgetkeepsgettingcut.Wewaitedforthisbudgetandplanforyearswefinallyreceiveitandithasbeencuteveryyearsince.Nursinghomesdonotgettherebudgetscut.whenshewasinnursinghometheynevertouchedtheamounttheywereallotayear.EveryyearoursgetscutandtheMooreCentergetsmoremoneyoutofherbudget.

12/4/20133:05PM

$10,001-$20,000peryear

$20,001-$30,000peryear

$30,001-$40,000peryear

$40,001-$50,000peryear

$50,001-$60,000peryear

$60,001-$70,000peryear

$70,001-$80,000peryear

$80,001-$90,000peryear

$90,001-$100,000peryear

Morethan$100,000peryear

Notapplicable


89/155

9 Forsomeonewhoresidesinanassistedl ivinghomeornursinghome,thisbudgetinc ludescostofprescriptionsandmedicalappts.

12/4/201312:01PM

10 Jessrequires24/7supervisionandteamsandspecialiststomaintainhergoodqualityofl i fe.FarmsteadsatonepointwasgoingtoaskJesstofindanotherplacementbecauseoftheintensityofherchallengesandnotbeingreimbursedwhenJessrefuseddayprogram.Herfundingneedstobemoreresidentialthanvocationalduetoheruniqueissues

12/4/20139:57AM

11 However,Ireallyamnotcertain. 12/4/20138:49AM

12 Thisdoesnotinc ludesupportedhousing. 12/3/20138:51PM

13 Mysonisinaresidentialplacementduetohiscomplexneeds.Hewasplacedoutofhisschooldistric tatage12andtransitionedintoagrouphomeatage21.Thisisabitmorecostly.Mostindividualsl ivewiththeirparentswhichkeepscostsdown.Hisannualbudgetisaround$140,000.Wecontributetohiscare.Hecomeshomeeveryotherweekend.HepaysrenteverymonthoutofhisSSIncome.Wepayhisdentalbil ls,buyc lothing,providemoneyforrecreationalactivities,etc.

12/3/20132:03PM

14 Ifeelmorefundingwil lneedtohappen.PayingtheDirectcareprovidersabetterpaywouldalsokeepgoodpeopleworkingforourfolks

12/3/201311:58AM

15 Sinceatransitiontoaresidentialschool.thesenumbershavechanged(andfundingsourceschangedabit)

12/3/20139:28AM

16 Notsurewhatthecurrentamountis,atonetimeseveralyearsagoitwasslightlyover$53,000 12/2/20132:34PM

17 Eachbudgetisspecific totheneedsoftheindivdualrec ievingservices 12/2/20132:00PM

18 Thisdoesn'tinc ludefurtherplanningforwhenwe(theparents)aregone. 11/29/20136:11PM

19 Justover$40kinc ludingregion10'scut. 11/29/20131:33PM

20 Daughterl iveswitha24/7modelhome-provider.SheusesPDMSwithArea5. 11/29/201311:36AM

21 Thisismybudget-Ihavenoideaifi tcomescompletelythroughMedicaidornot. 11/27/20136:08PM

22 Doesnotinc ludebasicmedicaid 11/26/20138:09AM

23 Ihaveneverbeentoldhowmuchmybudgetis 11/25/20138:22PM

24 IconsidermyselfandmyadultsonVERYVERYluckytohaveareasonablebudget. 11/25/20131:49PM

25 Toovariedbyindividual. 11/25/201311:16AM

26 Therangeabovedoesnotinc ludepuremedical.Iamnotsurewhatthetotalofthatisatthispoint. 11/25/201311:05AM

27 Thisdoesnotinc ludethestraightmedicaiddollarsthatarechargedbythehomehealthagencythroughmysister'sMedicaid.Shereceives171/2hoursperweekfromtheHHA.

11/25/20139:59AM

28 ThereareadditionalhealthcarecostsandperhapssomeschoolrelatedservicesalsocoveredbyMedicaid,butIamunsureofthe$value.ButIamsuretheyareconsiderable.

11/24/20138:18AM

29 InthefamilymemberscaseIthinktheremaybeabudgetIdonotknowwhatitis.InmysonscaseiftheirFSP,IEP,orISPhadbudgetsIdonotknowwhatitwas.WhenIwasgettingFamilySupportmyyoungestsbudgetwas$330eitherannuallyorevery6mo.Irememberthenumberbutnotwjatitreflected.Unfotuneatly,althoughtheideaofthesupportiswonderfulandIreallyneedit,Ihavebeenincreasinglyunabletouti l izeit.Ihavebeentryingtocompletetherenewalpackagesincelastyear.Iamnolongerabletogettotheofficebetween2and4pmonaMondaytopickupticketsformovietickets.Whilesti l l enrolledandwhenOncemyoldestshealthissuescroppedupin2009Ihavebeenincreasinglyunabletokeepupwithpaperworktorequestreimbursementforanaideformyyoungest.

11/23/201312:09PM

30 Thisamountiffor1ChildenrolledinInHomeSupportsand1AdultinCDS 11/23/201312:06PM

31 theyallvary 11/22/20135:56PM

32 ThisisthefirsttimeweareinaPDS.....historicallytherewasonec lasstheindividualattended.Sothisisprogressaswe'vetakenoverfromthetraditionalcasemanager.

11/22/20133:50PM

33 Idonotknowthepreciseamountofmoneydedicatedtomysister'sservices.Whensherequiredadditionalhoursofservice,however,itwaspossibletoincorporatethattimeandmoneyintoherplan.

11/22/20133:49PM

34 $360.00perquarter 11/22/20132:54PM

35 I'veknowofseveralc ircumstancesthatbudgetsareawardedonveryinnocuousc ircumstances,somebeingalmostidenticalbutvaryby10softhousandof$$.

11/22/20132:46PM

36 Budgetisnotonlyforindividualservicesbutalsoinc ludesalloftheoverheadcosts. 11/22/20132:25PM


90/155

37 therearesomelargebudgetsthatprobablycouldbescaleddown. 11/22/20131:57PM

38 Theagreementisperyearbuttheareaagencybreaksitdownpermonthandwil lnotallowyoutouti l izethefundingunlessyouhaveenoughintheyeartodatecolumn.

11/22/20131:50PM

39 TheCIHSwaiver.Noideawhattheschool-basedservicescost. 11/22/20131:33PM

40 Thisisfor24/7careofthepersonwithallcostsoffood,c lothing,shelter,entertainment,respite,meds,transportation,inc luded.

11/22/201311:46AM

41 Myannualbudgetisroughly$17,000.00,however,thatdoesnotinc ludeallofMedicaidcoveredservicesl ikemedical,dme,etc.

11/22/201311:28AM

42 Ourneedforcertainservicesissporadic,suchasrespite.Wecan'talwaysusethefundsbecausewesometimescan'tgettimetousetheservice.Wegiveuptheunusedbudgetfundswheneverpossible,butitisimportantforustohavetheabil i tytouseitwhenwecan.

11/22/201311:27AM

43 NotSure 11/22/201311:24AM

44 Ourmostrecentbudgetprovides$24,700fordirectsupportplusanadditionalunknownamountforadmin.costs.Lastyear,thatamountwassomewherearound$10,000.

11/22/201311:19AM

45 Thatisaguess. 11/22/201311:04AM

46 Thereisneverenoughmoneyforallneededservicessowehavetocarefullypickandchoosethem. 11/22/201310:20AM


91/155

Q23WhatwouldyouestimatethatyouoryourfamilysavethestateofNHbycaringforyourselforyourfamilymemberinyourhomeandavoidinginstitutionalization,out-

of-homeplacementorplacementinahospitalornursinghome?Thismightincludethevalueofthedirectcareyouprovide,servicesandsupportsprovided

byotherfamilymembers,friends,volunteers,etc.


I'mnotsure

$5,000orlessperyear

$5,001-$10,00

0peryear

$10,001-$20,0

00peryear

$20,001-$30,0

00peryear

$30,001-$40,0

00peryear

$40,001-$50,0

00peryear

$50,001-$60,0

00peryear

$60,001-$70,0

00peryear

$70,001-$80,0

00peryear

$80,001-$90,0

00peryear

$90,001-$100,

000peryear

Morethan$100,000per

year

Notapplicable

0% 20% 40% 60% 80% 100%


92/155

20.49% 117

1.05% 6

2.10% 12

3.50% 20

3.85% 22

4.55% 26

4.03% 23

7.01% 40

3.33% 19

5.95% 34

2.28% 13

5.60% 32

16.81% 96

19.44% 111

Total 571


I'mnotsure

$5,000orlessperyear

$5,001-$10,000peryear

$10,001-$20,000peryear

$20,001-$30,000peryear

$30,001-$40,000peryear

$40,001-$50,000peryear

$50,001-$60,000peryear

$60,001-$70,000peryear

$70,001-$80,000peryear

$80,001-$90,000peryear

$90,001-$100,000peryear

Morethan$100,000peryear

Notapplicable


93/155

26.26% 141

43.58% 234

14.90% 80

15.27% 82

Q24IfyouweretohaveaflexibleannualservicesaccountandbudgetthroughMedicaid,wouldyouprefertohavetheabilitytomanageityourselfandmovemoneyaroundintheaccounttospendmoreonserviceswhicharemore

importanttoyouandlessonservicesthatarenotasimportant?Orwouldyouratherleavethattosomeoneelseandperhaps

havelessflexibility?Answered:537 Skipped:355

Total 537

# Ifyouanswered"LeaveittoSomeoneElse"or"NotSure,"whatmightmakeyoucomfortableinmanagingityourself?

Date

Wouldliketomanagemy

annual...

Wouldliketodoit

myselfw it...

Wouldprefertoleaveit

tosomeone...

Notsure

0% 20% 40% 60% 80% 100%


Wouldl iketomanagemyannualservicesaccountandbudgetmyself

Wouldl iketodoitmyselfwithhelp

Wouldprefertoleaveittosomeoneelse

Notsure


94/155

1 Okay-sothisisaloadedquestion.IalreadycananddomanagethebudgettoaPOINT.However,Iwil l notcompromiseservicesmyindividualNEEDSformyownneeds...ie:morerespitefundingl ineitemvs.therapies,dayservicesetc.).ConsistencyisHUGEformyindividual.Irefusetogototallyself-managebydoinghisdayprogramminghiringetc,.becausewhenIwastoldthathewouldgetmorefrommydoingsoandIhadhadenoughofhisdayservicesprovider-hewasgoingtogetLESS.Yes,youreadthatright-less.NottomentionthatIwouldbethendoingEVERYTHINGandgettingnothingfordoingitexceptMOREstress.Plus-howironicitisthatifonegoescompletelyselfmanaged-thatmoneyisTAKENawayfromthebudgetfordoingso...really?Andyet,I'dgetnocompensationfortakingovertheaddedburden.

12/8/20138:13PM

2 Knowingtherewouldbeenoughmoneytoprovidealltheservicesshecurrentlyhas. 12/7/20136:13PM

3 FrequentcheckupsthatIamstayingwithinbudget 12/7/201311:57AM

4 AfraidthatIwouldn'thaveallthemoneythatIwouldneed.Lifechangesandsodoesneeds. 12/6/201311:10PM

5 MysisterismyguardianandsheandPathWaysmanageit.Itworkswellthatway. 12/6/20136:07PM

6 Idon'tfeelthatIhavethec larityofmindtodothismyself.AsIgetolderIfindmyselfgettingmorescattered.

12/6/20133:32PM

7 Myfamilymemberisanadult,unabletodothishimself.Itwouldbebestifsomeoneelsewasabletodoitforhim.

12/6/20132:45PM

8 notsurewewil lbeabletomanageforourchildbythetimeitisneeded-whenweareolder 12/6/20131:25PM

9 SOMEinput/guidancefromsomeoneelse,whoactuallyunderstandsmentali l lnessandcanbefirmbutsympathetic .

12/6/201312:29PM

10 Thec lientsandfamilymembersIworkwithindicatetheywouldbeveryinterestedinmanagingtheiraccount,butwouldneedsupportandguidancesincethisiscompletelynewtothem

12/6/201311:36AM

11 Becauseofthevolati lenatureofmydaughter'smentalhealthissues,Idonotwanttoberesponsibleforhiringandmanagingstaff.Iwanttobeinvolvedintheplanning,Iwanttounderstandthecosts,butIdonotwanttoberesponsibleforthedaytodaymanagementofherprogram.

12/6/201310:59AM

12 acasemanagerassignedtothoseunderpsychiatric careisnecessary.HIPPAisnothelpfulwhendealingwithamentallyi l l personwhomanagestheirownaccountsandowncarewithoutafamilymemberbeinginvolvedwiththeplan.

12/6/201310:05AM

13 Iamnotanexpertatprovidingcarethroughourpatchworksystemofservicesandorganizations.Iamacomputerprofessionalwithdeepexpertiseinthatarea,whenIneedlegalassistanceIgotoalawyer,whenIneedfinancialassistanceIgotoafinancialplanner...thisisnodifferentandIwouldarguemoreimportantsincewearedealingwithindividualswhodonothavetheabil i tytoadvocateforthemselvesandneedmoreassistance

12/6/201310:00AM

14 Documentationisabigissue.Ipayforeverythingformysonwhileheiswithme.TryingtoseparateoutanddocumenthowIspentthemoneywouldbecumbersome.Forinstance,apreviouscareprovidersawmysonwhenvisitingandtheydiscussedamovie.Shesaidtheymightmakeplanssomedaytoseeittogether.Isuggestedthatiftheywenttogether,Iwouldpayforit.TheymadeadateforthisSaturdaynightwhenIwil l beoutoftown.Bymyvolunteeringtopayforthemovietickets,IgotmysonoutofthehousewithapersonIdidnothavetopayotherthanthemovieticket.Ifoundacourseinvideogamedesignwhichwasjuststarting.Itistheonlythingmysonhasshow.Aninterestin.Iexplainedthementalhealthissuesofmyson&askediftheycouldtutorhim.Sinceitisastartupandnooneelseisintheadvancedc lass,Igotmysontoagreetogotothestudiotwiceaweek.AnothersonwhoworkssaidhewouldchangehisworksheddleandtakeitwithhimofferinghimtransportationandinsuringthatheovercomeshisfearofleavingthehousewhenIofferedtopayforhimtotakethecourseaswell.

12/6/20139:52AM

15 AsaknowledgeableoutsiderlookinginIfeelthathavingthatchecksandbalancepersonwouldbegood.Allowpeopletoexpresswhatthemoneyshouldbespentonbuthavesomeonereadilyaccessibletodiscusswhetherthisisthebestoption.Hopefullybydoingthisthemoneywouldlastandbeusedmosteffectively.

12/6/20139:49AM

16 Ijustsawthissurveyyesterday,24hrsbeforethec losingofthissurvey&Idonothavetimetothink...wonderingaboutthechoiceofdoingitmyselfwithhelpbutjustnotsure..wonderingifsomeofmyserviceswouldbecutifthingsweresimplyallocatedbymoneyneedsevaluation..PleasureisaNECESSITYinl i fe...andthatISNOTCONSIDEREDwhenapersonisonanybenefits..

12/6/20139:48AM

17 Don'thavethetimeandweneedsomethinginplacewhenwe'regone 12/6/20139:34AM

18 Mysononlygetsfoodstampsandcasemanagent.NotsurewhatMedicaidpaysfor. 12/6/20139:15AM


95/155

19 ithinkthatsinceiamattheendstageofl i fe-donotthinkthereisanythingthatthestateofnewhampshirecoulddotomakemecomfortableinmanagingabudgetformybrotherfromtheareaagencysetup.

12/6/20138:34AM

20 Wouldn'tknowwhatIshouldspendmyaccounton..medication,doctors,infusion,psychservices...whatismoreimportant???

12/5/201310:47PM

21 MyagemakesitdifficulttobeasinvolvedasIwouldl ike 12/5/201310:45PM

22 Ican'tmanageit.Withseverementali l lnessit'stoostressfulandconfusing.Additionally,myfamilymighttrytotakeitfromme.

12/5/201310:10PM

23 Notsurethisexistsformysoninthementalhealtharea. 12/5/20139:50PM

24 Lakesregioncommunityservicesdoesanexcellentjobensuringmybrotheristakenwellcareofandfinancesaresoorganized

12/5/20139:37PM

25 Nothingwouldmakemecomfortable.Itishardenougheachandeverydaytocareformysister.StresslevelsareveryhighandIdonotneedanyextrastressworryingaboutthemoneyandwhatelseIneedtodo.Ireallyl ikethingsthewaytheyare.

12/5/20138:29PM

26 Iamacasemanagerandsocialworkermyselfandhaveconcernaboutthequalityorservicesavailableatthistimeduetobudgetcutsandexperiencedworkersretiring/leavingthesystem--Iwouldneedtobeinvolvedtomonitoreffectivenessandprogressofworkerandplan.

12/5/20137:02PM

27 Neither.Howdoyouquantifywhentheneedhasvolati l i ty? 12/5/20136:39PM

28 IamnotoverloadedwithtimeasIworkandtakecareofmydaughter. 12/5/201311:19AM

29 Supporteddecisionmaking. 12/5/201310:21AM

30 IhavethismethodnowworkingwiththeAreaAgency. 12/4/201310:19PM

31 Nowthatmydaughterdoesnotl iveathomeafter22yearsoftotalcarewhichwouldhavecostthestateover$100,000/yeartohaveherinCrotchedMountainfrombirthIprefertolethercasemanagerandthemanagerofherhomemanageherservicesastheyaretheonesprovidingittohernow.Duetohermedicalneedsshebecametoomuchforourfamilytomanageonourownathome

12/4/20139:37PM

32 ThehelpIwouldneedwouldbeindoingspreadsheetsandthemath,butIwoulddefinitelyknowhowtomovethemoneyaroundtosuitemyneeds.

12/4/20139:18PM

33 IbudgetfundsfortransportationsothatIcouldgettomedicalappointments,applyforjobs,pick-upmyprescriptions,domygroceryshopping,volunteer,aswellasattendadvocacymeetingsinConcord.

12/4/20138:02PM

34 Idonotl iveinNHsowouldnotfeeleasyaboutit 12/4/20135:24PM

35 Ispendmydaysworkingonfederalformsforhomelessstudents,TitleI,TitleII,TitleIXandRural/Lowincomegrants.IamresponsibleforwritingFederalFocusSchoolPlansandmanagingtheaccountabil i typieceofeducationforamoderatesizedschooldistric t.ThelastthingthatIwantistocomehomeanddealwithmorecomplicatedpaperworkandbudgetingthatisstric t.Nothingwouldmakemehappywithneedingtomanageyetanotherfederalaccount.

12/4/20132:38PM

36 Wedidhaveaflexiblesituationwhichwasmanagedbymymother-in-law.Whenshedied,myfather-in-law(whospeaksEnglishasasecondlanguage)couldnotmanageit,sonowIwouldprefertoleaveittosomeoneelse,butwearehavingahardtime"enacting"thisplan.

12/4/201312:27PM

37 Idon'thavetimetolearnhoweverythingworksandworkmyjobandtakecareofmydaughtertoo. 12/4/201312:10PM

38 Wouldnotbeabletomanagemoneyforprogramswhatwouldbeneededthemostorhowtoaply. 12/4/201310:50AM

39 IfIknewhowmuchwouldbeavailableintimeofcrisis?Ifyouhaveabudgetandaremanagingityourselfwhathappensifacrisisoccursandthereisnothingleftinthebudget?

12/4/201310:00AM

40 Teamcouldhelp 12/4/20139:58AM

41 Someindividualsandfamiliesdoneedassistancewithdevelopingrealistic priorities 12/4/20139:52AM

42 N/A 12/4/20139:31AM

43 Ihaveacombinationthatworksforus,dayprogramweuti l izestaffattheagencybuthaveanindividualizedprogramwhichisgreatandIdonotmanagethemoneyforthat,butdomanagethemoneyandrespitepeopleforthecareofoursonasparents/guardiansashishomeproviders.

12/4/20138:31AM

44 Idonothavetheknowledgeourcasemanagerhas,andthefamilymembersarenowinour60sanddealingwithourownagingissues.

12/4/20136:59AM


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45 itshouldnotbeexpectedthatafamilymemberwouldmanagetheindividualalone.Thatinandofitselfisafulltimejob.speakingformyselftherewouldbenowaythatIcouldworkmycurrentFTandparttimejobsANDmanagemychild'sl ivingarrangements/coordinatehisdailycareandremainintactmyself.Itdoestakeavil lagetoraiseanindividualwithdisabil i ties......

12/3/201311:10PM

46 Myc lientislegallyincapacitatedandmanagingabudgetwouldbebeyondmytrainingandexperience.

12/3/201310:08PM

47 Doesthepersoncreatingthissurveyhaveanyideatheamountofknowledge,organization,andtimeittakestomanageaservicebudget,runaprogram,findproviders,fi l l outpaperwork,evaluate,assessandcreatechangeswhereandwhennecessaryforourlovedone???Iwoulddefinitelyprefertoleaveittosomeoneelse,becauseIamexhaustedandoldandheldhostagebymyadultson'sdisabil i ty.

12/3/20138:55PM

48 Nothing.Asalegalguardian,Idonotwishtooverseemyward'sbudget. 12/3/20138:18PM

49 havedoneit,takesateam 12/3/20137:21PM

50 Il ikehowitisnow.IgavetheinformationthatIfeltMeganneededforherplan,providedthejobsandgoalsetcandtheMooreCenterstaffhelpedcreatethebudgettogetMeganwhatsheneeds

12/3/20134:34PM

51 ThePersonCenteredPlan(525)offersthisabil i tyalready..withoversightfromtheareaagency. 12/3/20133:29PM

52 DuetothefactthatmyhusbandandIareaging,itgivesuspeaceofmindtoknowthatthisismanagedbysomeoneatourAreaAgencyandthevendorwhoknowsandcaresabouthisneeds.Weareunabletocareforhim24/7.It'simpossible.Also,itgivesuspeaceofmindabouthisfuturewhenwewil lnolongerbeheretowatchoverhim.Wehadasayinhowhewil ll iveouttherestofhisl i fe.Someoneelse,possiblyastranger,won'tbemakingthedecisionofwherehewil ll iveuponourpassing

12/3/20132:11PM

53 TakingGatewayscompletelyoutofthepicturewouldconsiderablymoreeffic ientlyuti l izeMedicaidfundsfromthestateandthefederalgovernmentinamoreindividualizedandmeaningfulway.Rightnow,theentityreceivingthemostbenefitfromthecurrentNHMedicaidsystemisGateways-andsimilarentitiesthroughoutthestate-togetherwiththeir"preferredvendors"fromwhichGatewaysclientsareforcedtopurchasetheirservicesratherthanmoreprofessionalormoreindividuallyappropriatevendorsselectedbyfamiliesofthedisabled.

12/3/20131:16PM

54 Theagenciesthatprovideservicestakethemajorpartofthebudgetwhichreallygetsmeirratatedwhilethosepeoplewhodirectlytakecareofourfolksgetcrappay.LikeIsaidbeforemoreofourbudgetsshouldgototheDirectCareStaffinsteadofmakingtheCEOSandhigherupsrich.Thisisjustwrong.IwouldneedhelpifIweretomanageitmyself.IgotacopyofmybudgetandIwassoangryatwheremymoneyisgoing.SurenotgoingtoDirectStaffProviderswhereitshouldbegoing.Thesepeopleshouldbemaking$15to$20anhrwithbenefitsTheyhavealotofresponsibil i tydaily.

12/3/201312:02PM

55 Iwouldneedtoseehowthesystemwouldworkandwhatitwouldtaketomanagetheaccountbeforeiwouldanswerthisquestion

12/3/201311:02AM

56 Wedonothavetheabil i tytogettotalkwihagenciesetc.asnitherofusdrivesowewouldhavedfficultymanagingitourselves.

12/3/201310:26AM

57 Iwanttocommenthereanyway.IthinkmorefamiliesshouldbeREQUIREDtomanagetheirownaccount.Iftheycan't,thentheyshouldreceivehelptoteachthemhowtodoit--andauditthemasfrequentlyasneeded.Toomuchoverheadtopeoplepushingpapers-usethemoneyfortheindividual.Toomuchworryaboutfraud.Familiesaremorefiscallyresponsiblethansomefor-profitorganizations.

12/3/20139:31AM

58 Asastaffwhosupportfamiliesandindividualsdirecttheirservices,itisimportantthattheyhavetheflexibil i tytomovethefundtowheretheyneedmostintheirsituation.Itisimportanttoassessthewholepictureoftheperson'sneeds,inc ludingtheirfamilieswithwhichtheyl ivewith.

12/2/20134:33PM

59 Iprefertohavetheareaagencymanageitwithmyinput.Theyhavetheexperienceandexpertisenottomentionthetimeinvolvedtocoordinateallfacetsofrequiredservices.

12/2/20133:51PM

60 IfIdidn'thaveafull-timejoboutsidethehomeandthenhavetoprovidetheeveningandweekendcoverageforoursonIwouldn'tmindtryingtomanagethefundswithhelp.

12/2/20132:36PM

61 Ithinkthatsomeindividualsmayhavetheabil i tytomanageabudgetthemselves,whereasotherswouldnothavethecapabil ity.Alsotherewouldneedtobeoversightsothatabuseofthesystemdoesnottakeplace.

12/2/201310:46AM

62 Il ikebeingabletomanageitmyselfbutitcanbedifficulttodosinceitcantakealotoftime.Dootherpopulations(otherthanindividualswithdevelopmentaldisabil i ties)havetheaccountabil i tytiedtoreceivingMedicaidfunds?Ifnot,isthisafairpractice?Asaparent/familymember,wedothebestwecaneverydaytousethesefundstopromotegrowth,doesaccountabil i tyneedtobesostringent?

12/2/201310:42AM


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63 Nothing.IwantGateway'shelpwiththis.Isti l l havecontrolonwhereandhowtouseit.Ican'tjedoingpayroll,taxes,benefitsformydirectsupportproviders.Ican'tandshouldn'tbedoingsupervision.Ican'tbeobjective-It'smyhome,mykids!Weneedathirdparty(Gateway's).Thissystemworksverywellandit'sveryeffic ient.Don'tScrewItUP!!!

11/29/20136:31PM

64 But...needtohavesomeoneinplacetotakeoverwhenwearenotabletodothisanymore. 11/29/20136:12PM

65 WealreadyusethePDMSmodelwithsupportfromMDS. 11/29/201311:38AM

66 DeeperunderstandingoftheMedicaidsystem. 11/28/20138:31PM

67 Iamalreadygettinghelpthrulocalareaagency"Gateways" 11/28/20133:38PM

68 Couldusesomemoneyonatherapythatactuallyhasshowngoodresults;massagetherapy. 11/28/20135:40AM

69 Ihavenocomplaintswiththecurrentarrangement 11/27/201311:27AM

70 N/A 11/27/201311:21AM

71 Iwouldblowitall,i tisbetterthatIgetthehelp. 11/27/20138:44AM

72 Unabletoaffordcontinuedcareathome--notenoughservices!!ParentwasinstitutionalizedanddiedasaresultofaStage4pressureulcer

11/26/201310:21PM

73 MyhusbandandIareelderlyandmyhealthisnotgoodsowouldfinditstressfultohandlemorethanwealreadyare.Therecanbeaburnoutpointwithparentsastheyage.Ourfamilyissmallandouronlyotherchildhashealthissuesofhisown.

11/26/201311:34AM

74 Icurrentlymanagethefundsmyselfanditworksunti ltheagencyrealizeswehavebeenabletosavefundssotheywanttoreducemybudgetforthefollowingyear.ItisfinewithmeiftheywanttotakethefundsthatIhavesavedtohelpanotherfamilywithaonetimeexpensebutIcannotguaranteethatIwil l beabletosavefundsthefollowingyear-thisthenbecomesapunishmentforhavingbeencarefulwithtaxpayerdollars.

11/26/201310:57AM

75 Iwouldwanttobeabletoconferwithtrainedpeopletohelpmebudget,planandpreparefortheunexpectedproblemsthatarise.

11/25/20139:15PM

76 Ihaveamonthlybudgetnotanannualbudget. 11/25/20132:04PM

77 Manyfamiliesdonothavethetime,energy,ordesiretobethisinvolvedwithcareneedsoftheiradultincare.manywanttomoveonwiththeirownlivesandassisttheindividualtomoveonasanindependent(aspossible)adult.

11/25/201311:18AM

78 Please,please,please….Iambeggingforthisoption.Childrenwithautismaresouniqueandnotwokidsrequirethesameservices.Anareaagencyandthecurrentsystemisunabletoaccommodatethesedifferences.Bythetimeyougetthe20peopleinthemiddletoagreetoyourchildsneeds,theneedortheopportunityhaspassed.Wealltakeadvantageofthegenerosityofothersinthewayofgrants/giftssobeingabletomovepreviouslybudgetedmoneytoanareayouthoughtyouwouldn'tbeabletoaccommodateininvaluable.Themanagementisbesthandleasc losetotherecipientaspossible.ThisoptiondoesnotmeansomeoneCAN'TgethelpitjustleavestheoptiontoNOThavehelpopen.

11/25/201311:09AM

79 It'sessentialtohaveacontactpersonwhoisreachabletoreceiveguidanceandsupportwhenneeded.Wecurrentlyhavethis.

11/25/20139:43AM

80 learningtomakegoodchoicesonhowtospendmoneytherightway. 11/24/20137:32PM

81 Ifthefundingwasequaltoorgreaterthanoursonreceivesnowandnorestric tionsontheprograms,transportationorserviceagencywechoosetouse

11/24/20136:03PM

82 Wou;ldwanttheareaagencycasemanagertoassistwiththistokeepfamiliesupdatedonpolic iesandproceduresthatarenreworcominginthefuture.

11/24/20131:29PM

83 Wecurrentlyhaveself-directedservicesandcandothis.Itworkswellwhenyouhaveaknowledgestaffersupportingyouwhocanhelpidentifyallowableversusineligibleservicesandcostsinatimelymannerwhenasked.Itiscomplicated,though,andrequiresalotofreportingandrecordkeeping.Itshouldbeanoptionbutmightnotbebestforallfamilieswhodonotwanttoberesponsiblefortheadministrativemanagementofservices..

11/24/20138:22AM

84 Couldsavemealotofmoneysincetherearemanythattake"pieces"offundingoutnowanditisnotnecessary.

11/23/201311:22PM


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85 Regardingmychildren.IfthismeantIhadabudgetwithal istservicesandconstraints(acheckbookordebitcard)andonlyhadtosendcopiesofthestatementstosomeone(viaemail).Iwouldbecomfortabledoingitmyself.Orsomethingl ikeit.InotherwordsifIcoulddoitinthemiddleofthenightwithoutreamsofpaperneedingtobefi l ledout.Exonlineformslikethis,webpagestoread.Somewaytoensurethattherelavantinformationisaccessibleandthereisaminimumamountofpapertolosetrackof.Iamnotafraidofthemathpart.Ifi tmeantIhadtofi l l outforms&statementsandthenmailordeliverthemthenIwouldneedhelp.IwouldonlybeabletoeithertalktheinfooverthephoneorsendanswerstoquestionsviaemaiI.IjustcannotmanagethepaperworkontopofeverythingelseIamalreadydoing.Regardingtheadultssiblings,theydonotwanttheirbigsisterordaughtertell ingthemwhattodo.Inthatrespectathirdpartywouldbeveryhelpful.AndalthoughIwouldl iketodoitIdonotknowhowIamgoingtofitanythingmorein.Ithinkmoreflexibil i tyisbetter,butIneedmoreinformationonhowtoimplement.Moreflexibil i tyisnogood,ifservicesarelostbecauseyoudon'tfi lepaperworkontime.

11/23/201312:52PM

86 Educationofhowtobudgetandaccountforallthemoney,withaprojectplanandannualgoalsetting.Al istofserviceprovidersandassistanceforover-allplan.

11/23/20137:51AM

87 1.SinceIamnotmyadultson'slegalguardian,itwouldbehewhowould"manage"theaccount.Iwouldbeconcernedaboutthechoiceshemaymakeorbeencouragedtomake(heisverysusceptibleto"guidance").Withtheareaagency,Itrustourservicecoordinatorandfeelthatweasparentsareappropriatelyinvolvedalongwithoursoninmakingdecisions.2.Theareaagency'scontractorhasdoneagreatjobrecruitingDSPs.Idon'twanttohavetofindmyownDSPs.3.Idon'tunderstandwhyflexibil i tyisgivenonlytothosewhomanagetheirownprograms.

11/23/201312:39AM

88 Ahugepartofservicesformysonisknowingthat,ifsomethinghappenedtohisfatherandme,asystemwouldbeinplace.Plus,nothavingtomangehisservicesnowisahugerelief,aswebothwork,haveotherchildren,andcannotcontinuetoprovidecarenowthatheisanadult,andhastobeonhisown,Wewwiuldn'twanttohavetomanageourtypicalchildren'sfinancesithroughouttheiradultl ives,either,nor,weassume,wouldmostparents.

11/23/201312:38AM

89 Wouldl iketomakesurethatIamfullypreparedandeducatedinwhatisallowedtobecoveredbytheplanandknowofanychangescomingaheadoftime.Also,Ihavemanycommitmentsalready,Imaynothavethetimeorknowledgetohandlealltheservices.

11/22/201310:42PM

90 Iammuchmorecomfortablemanagingthebudgetmyself. 11/22/201310:26PM

91 Thissoundsl ikeatrickywaytomakelessmoneyavailable,bygivingusasetamountandexpectingustohaggleasindividualswithserviceagencies.Idonotl ikethatplanATALL.Ifservicesaredeterminedtobeneeded,theyshouldbeprovided.Period.

11/22/20135:31PM

92 Iwouldneedalotoftraining.I'm74yearsoldandfeelsomeoneelseshouldhandleitwithoversightandinputfromguardians.

11/22/20134:19PM

93 Ifindtheprospectofhiringandfiringstaffundesirable.Itismorecomfortableformetoworkwithandthroughtheareaagency.IknowtheareaagencywouldguidemetowardmasteringtheprocessifwemovedtoSDS,butthatsti l l doesn'tmakemewanttotakeonthetask.

11/22/20133:56PM

94 Trainingregardinghowthevariouschoosesmighteffecttheservices 11/22/20133:53PM

95 Itsjustnotenoughmoneytohelpus..$360.00perquarterdoesn'tevenworkifIcantfindrespite.WouldhelpifIcouldusethemoneyforherafterschoolprogramthat'soutrageousincost

11/22/20132:57PM

96 Beentheredonethat,bothwaysandfoundoutthehardwaythattomuchofthepiedoesnotgototheonesthatitisintendedfor.Irealizethatthereareexpenses,butknowthatmuchiswastedonthingsthatreallydoshouldnotbesupportedonthebacksofourannualbudgets.Wouldl iketobeabletoeliminatetheareaagencyfromthemanagementprocessoratleastreducetheir"take"fromthebudget.

11/22/20132:46PM

97 Thiswouldbeadream.Theareagencieshavetoomuchpowerandlowqualityemployees 11/22/20131:51PM

98 Thingsaregoingwell-whychange? 11/22/20131:34PM

99 Iwouldbemorecomfortablemanagingthefundsmyself,i fIknewwhatwasinvolved.Also,simplifiedbenefitsfi l ing.

11/22/20131:20PM

100 Icurrentlyamnotinvolvedinself-directedservices.ThemainreasonisthatImustcontinuetoworkfulltimeoutofthehomeandhiringhisstaff,monitoringtheservicesgiven,dealingwithpersonnelissues,etc.,isjusttoomuch.WhenI'mnotworking,I'mfocusingmostlyonworkingwithmyadultsonandremindinghimtotakecareofhisADLs,followuponnecessarypaperworkforSSI,Medicaidorhisjob,etc.Thereisjustnotenoughtimeinthedaytoaddmanaginghisannualservicesaccount.

11/22/201312:23PM

101 PrefectexampleDayProgram....Mandatory30aweek....Notsomethingeveryonewants 11/22/201311:35AM


99/155

102 Havingtheeducation&knowingalltherightpeopletoassistmetomakeithappen. 11/22/201311:27AM

103 Wearetoldthatwecurrentlyhavethisabil i ty. 11/22/201311:21AM

104 Wedon'thaveanindepthknowledgeofthesystemandfeelthatwegetoptimalserviceswhenmanagedbyaprofessionalthatwil lprovidel ifelongcontinuity

11/22/201311:04AM

105 moreworkformetodo.Withallthepaperworkthatneedstobefi l ledout.Notimetodoit,ButhowcanItrustsomeonetodoithowdotheyknowwhtisneededornotneeded

11/22/201310:40AM

106 Idon'twanttodoMOREwork.Theagencyneedstodothehiringandsupervising.Iseethisdesireto"manageservices"asawayfortheAgencytodoless.Theyneedtodomore.

11/22/201310:26AM

107 paperworkisdauntingwouldn'tknowhowtogoaboutfindingpeopletohelpdon'twanttobemychild'sproviderforever(dependence)

11/22/201310:24AM

108 Wecurrentlymanageourbudgetanditalignswithserviceswereceive 11/22/20139:57AM

109 Ihavechronicconditionssothat'swhyIhavedoneitthisway,andthatwayifsomethingshouldhappentomeatleastthingsareal ittleinplace

11/22/20139:56AM


100/155

23.79% 123

9.09% 47

19.15% 99

6.77% 35

1.35% 7

12.57% 65

3.48% 18

20.89% 108

2.90% 15

Q25Ifyoucouldonlychooseonething,whatwouldhelpyouthemostin

developingandmanagingaflexible,annualMedicaidservicesaccountandbudgetforyourselforyourfamily

member?Answered:517 Skipped:375

Total 517

Guidancefroma

profession...Knowing

up-fronthowmuch

money...Adv icefromaspecialistontherig...

Knowinghowmucheach

serv icecosts

Knowingthereputationoftheserv ic...

Beingabletochangemymindand...Talkingwith

someonelikemewhohas...Hav ingquality

serv ices...

IdonotthinkIwouldneedanyhelp

0% 20% 40% 60% 80% 100%


Guidancefromaprofessionalwhoknowshowthesystemworks

Knowingup-fronthowmuchmoneyIhavetoworkwith

Advicefromaspecialistontherightmixofservicesandsupportsformeormyfamilymember

Knowinghowmucheachservicecosts

KnowingthereputationoftheserviceprovidersIhavetochoosefrom

BeingabletochangemymindandchangemyplanandbudgetwheneverIneedto

TalkingwithsomeonelikemewhohasmoreexperienceinthisthanIdo

Havingqualityservicesavailablelocally

IdonotthinkIwouldneedanyhelp


101/155


1 Ithinkit'simportanttonotethateventhoughwewereonlyabletoselectthemostimportanttous-thatthereareseveralthingsmentionedthatfollowthemostimportantissuetome.

12/8/20138:15PM

2 Ithinkalloftheabovewouldbeimportant,butIsupposeknowingupfronttheamountofmoneytoworkwithwouldbethemostimportantfirststep

12/7/20138:29AM

3 Howcanyouchooseonlyonewhentheyallapply 12/6/201311:18PM

4 Inourcasetheserviceswerefragmentedbecauseofourson'sdenialandavoidanceofwhatcareweweretryingtosetupforhim.

12/6/201311:41AM

5 ALLOFTHEABOVE...ifsomeoneisworkingfortheirpaycheck,don'ttheyneedALLOFTHEABOVE?WhydoMoneysituationsseemdifferentforusoflowermeanswhogetbenefits?AreweNOTREGULARHUMANBEINGSinthisdifficultsociety??

12/6/20139:50AM

6 N/A 12/5/20139:51PM

7 PersonswithABIandtheirfamiliesareoftenoverwhelmedbytheprocessofplanningareturntothecommunityandrequireprofessionalsknowledgeableabouttheirfamilymembersneedsandthesystemsinNHtomakeeducateddecisions.NoteveryonewithABIcangohomeortheirfamiliesdonothavetheabil i tytomanageanaccountl ikethisontheirown.

12/5/201312:07PM

8 understandingchoicesavailable 12/5/20138:51AM

9 Wealsohaveproblemswithqualifiedpeopletocareforoursoninhomeforrespite.Thisdoesnotinc ludehisdailyprogram.Weareveryhappywithhisdailycaregiver.

12/5/20138:43AM

10 Alltheseareimportant,Icannotchooseoneoftheabovethatwouldhelpmethemost.IneedtoknowtheamountofmoneyIhavetoworkwith,butalsoneedtoknowwhattheservicescostandalsoneedtoknowthereputationoftheprovidersandofcoursethenatureofdisabil i tiesrequirestheflexibil i tytochangeaplanasneeded.Ialsoneedguidancefromaprofessionalwhoknowsthesystemaswellasadvicefromspecialistsontherightmiofservicesandsupportsneeded.Icannotpickone.

12/4/201310:09PM

11 Iunderstandbudgetdevelopmentandcostplanning 12/4/20133:12PM

12 Inadditiontohavingtheflexibil i tytochangewhennecessary,itwouldalsobeimportanttomaintainateam,whichwouldinc ludeguidancefromaprofessionalwhotrulyunderstandshowthesystemworks.

12/4/20131:50PM

13 Actuallyseveraloftheseserviceswouldhelp. 12/4/201310:02AM

14 Farmsteadsisonly45minutesaway!!! 12/4/20139:59AM

15 Sincesuchaplanalreadyexistsandisin-place,again,whatwouldhelpmostistoknowWHY? 12/4/20139:57AM

16 Idol iketoknowwhatweareworkingwith,asIdoforthehomeproviderprovision,IthinkIknowasbeforeIdidwhatthecostofdayprogrammingpersonnelcostsso,it'sgood!

12/4/20138:33AM

17 stil l wouldnotbeenoughtoprovidefortheindividual(s). 12/3/201311:11PM

18 TheseareoddchoicesandeachpersonorfamilyneedsaccesstoALLofthem. 12/3/20138:56PM

19 itsaverydifficultprocessthattakesateam,orifthepersontakingcareofitisretiredandthatistherewholel ife

12/3/20137:22PM

20 Havingtheabil i tytodevelopthebudgetbasedonactualneedsandassociatedcostofserviceratherthanonavailablefunding.Mostofthestatementsareimportant,andsomeequallyso.

12/3/20134:39PM

21 AndhavingfolkswithmoreexperiencetobesureallMegansneedsaremet 12/3/20134:35PM

22 Optionsforqualityserviceprovidersarevery,veryl imitedinNH.Ibelievethisisafunctionoflowhourlyreimbursementfordirectserviceproviders,l imitedincentivestoworkwithadultswithdisabil i ties,l imitedtrainingworkshopopportunitiesforthosewantingtoworkwithadultswithdisabil i ties,lackofpositivebehavioralsupportandtrainingforthosesupportingadultswithdisabil i ties,andalsoloweredexpectationsforcontinuedgrowthanddevelopmentofadultswithseveredisabil ities.

12/3/20133:33PM

23 Thisdoesn'tseemlikeafairquestion.It'sneveronlyonethinginoursituation. 12/3/20132:12PM

24 IhavealreadycreatedastrongandsupportiveteamofdoctorsandteacherswhohaveknownourfamilyformanyyearsandwhomItrusttomakeprofessionalrecommendations-unliketheunqualifiedandcondescendingstaffatGateways.

12/3/20131:20PM

25 GatewaysinNashuahasbeenexceptional 12/3/201312:51PM


102/155

26 Weneedtokeepourlocalagenciesopen.Ineverknewhowimportanttheirneedswereunti lmysonreached21thenohboy,IdonotknowhowIwouldhavemadeitwithoutthem.Budgetissoimportantalsoandbeingabletochangeiti fnecessary.Wegetspeanutscomparedtootherswithdisabil i ties.

12/3/201312:04PM

27 Nothavingtochangetheproviderswecurrentlyhave. 12/3/201311:09AM

28 Beingabletoadequatelycompensatethemwouldn'thurteither. 12/3/20139:16AM

29 WefellinwithanOTserviceproviderwhosuddenlyc losedheroffice,leavinguswithoutwarningornotice.Ittookoverayeartogetmyson'srecords.TurnsoutshewasbeinginvestigatedbytheAtty.General'soffice.Horribleexperience.Inthemeantime,hisskil l leveldeterioratedbecausewehadnowrittenplantoworkfrom.

12/2/20135:09PM

30 Familiesneedthesupporttoaccomplishtheirgoalstheirtheson/daughterneedstobesuccessfulandhaveavaluableday.

12/2/20134:35PM

31 &abil itytochangeit. 12/2/201312:43PM

32 wouldnotdoit 12/2/201312:05PM

33 Difficulttochooseonlyonething. 12/2/201310:43AM

34 Nothing.Don'twantthis!Badidea 11/29/20136:33PM

35 Knowingthesystemisveryimportant.But...havingsomeonetoguideyouthroughalloftheaboveisnecessary.

11/29/20136:14PM

36 Andhavinganincreaseeachyearasthecostsofservicesandequipmentincreaseseachyear. 11/29/20131:36PM

37 N/A 11/27/201311:22AM

38 Theanswerstothisquestionaren'tframedthewayIwouldanswer.Youcan'tdevelopaplanwithoutknowingwhateachservicecosts,andequallycriticalknowingwhatservicesareavailable,andalsohavinginputonwhichonesarebestoverallandwhichonesaregoingtogetthemostvalueintermsofsupportingIEPgoalsandotherdevelopmentalprogressmilestone.

11/26/201312:35PM

39 Iwouldl iketomanagetheaccountmyselfsoIdon'thavetofightwithmyareaagencyeveryweek.ItwouldbemuchbetterofIhadtheabil i tytogetalloftheexpensesapprovedatthebeginningoftheyearandnothavetodealwiththeareaagencyeverytimemychildneedssomething.

11/25/20132:07PM

40 I'massumingthattheup-fronthowmuchmoneyavailableisagiven.Nobudgetworkswithoutthisasastartingpoint.

11/25/201311:11AM

41 Myhusbandneedstoreceivethemonthlybudgetonamonthlybasis. 11/25/201310:02AM

42 Ridiculous…can'tchoosejustonething…allofthesecategories(exceptforthelastoption)arenecessarytohaveahighqualitysystem.WhenitcomestothissmallpartofhumanityIamtheexpertonmychild/familymember…eventhemostexperienced'specialist'isn'tasknowledgeableasme…currentlyIeducateourspecialistsaboutourdaughter'sneedsandtheyhelppointusintherightdirection.Thespecialistsneedtol istentotheindividuals/familiestheyserve.Bottomlinethough…individualsandfamiliesneedtohaveflexibil i tyandthepowertomakethemostinformeddecisionsbasedupontheirneeds.

11/25/20139:49AM

43 TheAreaAgencymodelworksextremelywellandshouldnotbechanged. 11/25/20139:10AM

44 Idonotdomathwellandcouldn'tmanagetheaccountalone. 11/24/20137:33PM

45 Astreamlinedreportingprocesswhichwouldcutoutallofthemiddlepeople,whoareeatingawayatthebudget,sothatmychildwouldhavemoreofthefundsandbeabletodomorethings.HavethosefamilieswhouseCDShaveGatewaysavailableforconsultationsandchargethebudgetperhourfortheirservicesonlywhenneeded.

11/23/201310:09PM

46 Thingschange,peoplechange,especiallywhenacrisisoccurs.ALlofthesethingsareimportanttoadegree.Somedaysijustneedtorolewithit.

11/23/20138:13AM

47 Alloftheabove,giventheamountofpaperworkandlackofhelpfindingtherightprogramswithaverymedicallycomplexchild,Iamburntoutandhaveveryl i ttletimetoinvestinmorepaperwork,schedulingandothertasks

11/23/20134:38AM

48 Idon'tbelievethisappliestomyson'ssituation. 11/22/20136:51PM

49 Therearemanythingsinvolvedatdifferenttimesinanybudgetprocess.Services/needs/costsareinconstantflux.Noone"specialist"couldcoveritall.Weneed(andhave)ateamapproach

11/22/20136:25PM

50 Idonotwanttohavetofind,locate,budget,intervieworanyotherindividualmanagementoftheMedicaidportionofmydaughterscare.Iprefertoworkwithourcasemanagertocraftthisprogram

11/22/20135:20PM


103/155

51 Thereareactuallyseveralthingsbutyouonlyallow1chouce. 11/22/20134:21PM

52 Idon'tthinktherecanbejust1fromthisl ist:Youneedtoknowtotalbudgetandcostofeachtoplan,youneedtohaveadvicefromsomeonewithexperienceandyouneedtohaveguidancefromaprofessionalwhoknowshowthesystemworks.Adviceabouttherightmix,andhavinghighqualitylocalservicesareallrequiredtomakeasuccessfulplan

11/22/20134:08PM

53 IthinkyouneedallthepiecesabovetodevelopandmanageaflexibleannualMedicaidservicesaccount.KnowingIcouldcallonsomeonewithexperience,atanytime,todirectmetoquality,localservicesiscritical.

11/22/20134:03PM

54 unknown 11/22/20133:43PM

55 Whatisneededisobjectiveadviceaboutwhatservicesareavailable(inc ludingal istofvendors,respiteproviders,etc.)andhelpmakingthosecontacts

11/22/20133:13PM

56 Ihavelearnedthemostfromthosethathavetheleasttogainovertheyearsandtheleastfromthosethathavethemosttogain.Notonlyisitimportanttoknowhowalltheservicescostandwhatalltheavailableservicesare,andwhereitcomesfromsothatwecanberesponsiblestewardsofpublicmonies.

11/22/20132:46PM

57 Youneedtoknowthegoverningrulesaboutwhatfundingcancover.Andtheapproachshouldbeabudgetthatisconsolidatednotsomanyunitsauthorizedforthisandforthat.Idon'texpectthesystemtopayforeverythingbutwouldl ikeasystemthatwouldallowpayingformore'normal''natural'supports.Athankyougiftforaco-workerwhoprovidessupportsonthejob-$25/yrismuchmorecosteffectivethan$20/hrfor10hrsaweekfor50weeksayear.

11/22/20132:32PM

58 thisissomethingthatIamnotinterestedindoingthisIfindthisjustplacesmorestressandtensiononfamilies.Thisiswhyareaagencyareinplace.Thischoiceisunacceptableformyfamily,Icanmakemoremoneyworkingwithinmycareerthandoingthis.Ineedmychildtogetmorethan30hoursofservicesaweeksothatIcanwork

11/22/20132:00PM

59 althoughIdonotthinkthatcostmattersverymuchtomostindividuals 11/22/20131:58PM

60 Whenitcomestoformulatingaplanformyson,allthebestadviceIhavereceivedhascomefromotherparents--notfromprofessionals.

11/22/20131:36PM

61 workingwithsomeonewhoknowsmychild 11/22/20131:35PM

62 noneverbalandserveMRw/Autism 11/22/201312:48PM

63 AgainwhileIworkfulltimeoutsideofthehome,unlessmorehourscouldbeaddedtoaday,Iwouldnotbeabletodothis.

11/22/201312:25PM

64 Idon'tthinkyoucanhaveonewithouttheother. 11/22/201312:07PM

65 Largerbudgetandhigherpayfordspworkers 11/22/201311:36AM

66 Workingfull-timeandpart-timetokeepourl ivesafloat,Idon'thavethetime,knowledgeorskil l setneededtodoeverythingmyselfforher,norwouldshebeashappyasshecurrentlyis.Whenshewashome,shereceivingserviceshersocializationwasminimal,shewasunhappyanddepressed.Nowshehasareasontol ive,lovesherl i fe,friends,staff&l ifestyle.

11/22/201311:31AM

67 Mygrandsonwouldl ikehisownplacetol ivebutwithsupportsystemforeverything. 11/22/201310:32AM

68 Iwouldhavenoproblemifthingswe'resetupinamannerbuttheyshouldbeandfollowthrough 11/22/20139:57AM


104/155

29.82% 153

16.37% 84

29.63% 152

21.05% 108

32.94% 169

8.38% 43

13.84% 71

30.02% 154

Q26Whatdoyoufinddifficultaboutmanagingaservicesaccount(ifyouhavehadone),ordoyouthinkwouldbedifficult

ifyoudidhaveone?Answered:513 Skipped:379

ThefearofrunningoutofmoneyKeeping

trackofhowmuch

money...Figuringoutwhattodo

when...Gettinga

timelyanswer

fromthe...Hav ingthe

timetokeeptrackof...

I'mnotgoodwithmoney

andneedh...

Iwouldnothaveanyproblem...

Hiringandfiringstaff

Findingaffordableserv ices

Findingquality

serv ices

Findingtheneeded

serv ices

0% 20% 40% 60% 80% 100%


Thefearofrunningoutofmoney

KeepingtrackofhowmuchmoneyIhavespentduringtheyear

Figuringoutwhattodowhenunexpectedexpensescomeup

Gettingatimelyanswerfromtheprofessionalwhoishelpingmemanagethebudget

Havingthetimetokeeptrackofeverything

I'mnotgoodwithmoneyandneedhelpmanagingit

Iwouldnothaveanyproblemmanaginganannualservicesbudget

Hiringandfiringstaff


105/155

35.28% 181

41.72% 214

38.60% 198



1 Ifthisweretoeverhappen-maybetherecouldbealedgerbooktohelpuskeeptrack-somethingthathasalreadybeenproventoworkthatwouldn'trequireusknowingspreadsheetsetc.

12/8/20138:19PM

2 Budgetreportsarenotsentouteverymonthastheyaresupposedtobe,soitishardtocheckmyaccountwithmymom

12/8/201311:16AM

3 Thenatureofmydisabil itymakesitextremelydifficult,i fnotimpossibletoinitiatecontact/askquestions/self-advocate,sohavingsomeonewil l ingandabletotakethetimetoknowmeandsupportmeinsuchthingswouldbeimmenselyhelpful.Itis,really,essential.

12/7/201310:54AM

4 BeingcontrolledinwhatIwanttodo. 12/6/201312:33PM

5 Jugglingallofthis. 12/6/201311:37AM

6 NHREALLYNEEDSAHALF-WAYPROGRAMFORPEOPLEWHOCOMEOUTOFTHEHOSPITAL,WITHENOUGHSTAFFSOTHEREISNOTAWAITINGLIST.

12/6/201311:08AM

7 WEARENORMALHUMANSINTHISDIFFICULTSOCIETY. 12/6/20139:51AM

8 AtthistimeIamnotmanagingservices 12/5/20136:31PM

9 Iwouldl iketoseehiringandfiringstatffbuttherenotbeenstaffisevergottenfiredtheytheyneedtobeheldaccountabletherenoaccountableactionsagainstServicesProviderstoday

12/5/20131:16PM

10 completingallthepaperworkinvolved. 12/4/201310:11PM

11 neverhadone 12/4/20139:43PM

12 IwouldfinditdifficulttokeeptrackofmoneyspentduringtheyearIFmycasemanagerdidnotquarterlysendmeinformationonwhatthestatusofthebudgetis.BecauseIreceivetheregularupdates,Icancross-checkmyrecordswiththerecordsfromtheAgency.Thisisanimportantserviceforme.

12/4/20131:53PM

13 Willnotdodon'tknowandwantsomeonelocallyandprof 12/4/201310:56AM

14 Rightnowwedon'tknowhowmuchservicesforourdaughtercosts.Howcanwegiveanaccurateanswerifwedon'tknowthecostsandhowmuchmoneyisavailableandwhathappensintimeofCrisis?

12/4/201310:05AM

15 Iamnotqualifiedbutpathwaysandfarmsteadsare.pleasejustletmebetheMom!!! 12/4/201310:00AM

16 Ididdothisforawhile,butwasreallydoinghalfandhalfasIdiduti l izeservicecostsfromtheagencywhichwasaHughhelptous,butthearrangementwehavenowworkswellwiththeagencycontroll ingthedayprogrammoniesandusasafamilymanagingthehomecareandrespiteandotherneededexpenseswiththehelpoftheAAtofindcaregiverstohelpwithrespite/recreationalneeds.

12/4/20138:36AM

17 poorquestion 12/3/20136:41PM

18 Iftheservicesintheagreementwereallbeingfulfi l led,thensomeoftheotherswouldcomeintoplayperhaps,suchasrunningoutofmoneyorbeingabletoaccessrealtimebudgetinformation.

12/3/20134:45PM

19 IthinkthecurrentchoicetofamiliesforPartic ipantDirectedandManagedServicesisaverygoodoption(HeM525)butthatthereneedstobecontinuedsupportandoversightfromtheareaagenciestoassistinthisprocess.Hiringstaffisdifficultbecausethepoolofqualifiedcandidates,andtherateofpayfortheseprovidersistoolow.

12/3/20133:38PM

20 Thiswouldnotworkforus.Weareaging.Can'tdoit. 12/3/20132:13PM

21 Forthosewhoneedassistance,aprofessionalhealthcarestaffwithaproventrackrecordoffinancialprudenceandappropriatecarerecommendationsshouldbeavailableforconsultation-suchasBlueCross/BlueShield,NOTGateways.

12/3/20131:23PM

22 Mostoftheabovewouldbedifficultwithoutmyareaagency.Theycurrentlymanagemysonsbudgetandhisservicesreceivedanditworkswell.Shouldnotbechanged.

12/3/201312:06PM

Findingaffordableservices

Findingqualityservices

Findingtheneededservices


106/155

23 Toomuch%takenoutforoverheadforabureaucrattomanagetheaccount.That$shouldgotoc lient.Auditourfamilyonceortwiceayear--offerhelpifneedbe.

12/3/20139:32AM

24 Familiesneedsupportandguidanceindirectingtheirservices 12/2/20134:36PM

25 Toomuchpaperwork.l imitationssetonmileage.Workman'scompensation.Receivnga1099formattheendoftheyear.

12/2/20132:52PM

26 Alloftheaboveapplywhencoordinatingtheservicesindifferentwaysforeachindividual 12/2/20132:01PM

27 Noneantic ipated.Ofcourse,notbeingfulltime,assistanceinfindingservicesandseeinghowtogetwhatisneededisalwaysrequired.I.e.,aplanthatjustdepositsacheckinanaccountwouldn'twork.

12/2/201312:48PM

28 n/a 12/2/201312:06PM

29 Changingrules. 12/2/201310:44AM

30 Findingstaff!!! 11/29/20136:15PM

31 Fortunately,Idonothavetomanagemultiplestaffbecausemydaughter'sresidentalprogramis"wraparound".MyMDSPDMScoordinator&MDSfiscalassistanthelpmemanagetheexpenses.ThePDMSprogramhasmadeitpossiblytofindahome-providerwhoiscontentedwithherreimbursementandwithworkingdirectlywithme&withtheassistanceoftheareaagencyinmakingtheannualISP.

11/29/201311:43AM

32 N/A 11/27/201311:22AM

33 Thesearetheproblemswecurrentlydealwith. 11/26/201310:59AM

34 WearejustnowreceivingInHomeSupports.Notenoughexperienceyet 11/26/20138:11AM

35 ThedaytodaystuffIthinkwouldoverwhelmme. 11/25/20139:15PM

36 Again,notoperatingwithacurrentbudgetaddsunneededstress.Myhusbandcannottellwherethebudgetamountreflectsforthatperiodoftime.

11/25/201310:07AM

37 Yesitdoesrequireasubstantialamountoftimemanagingthings,butit'sworthittoustomaintainthatcontrolofwhoworkswithourdaughter.It'schallengingfindingandretainingqualitystaffthatwil lstickaroundbecauseweareforcedtocompensatethemsopoorly(inordertostretchourbudget).Icouldopttouseavendoragency,butthatistoocostlygivenmydaughter'ssupportneedsandthesizeofherbudget.

11/25/20139:54AM

38 Idon'tneedtoknowhowmuchmoneyisavailableinthebudgetatanygivenpointbecauseIcantrackthatmyself.Butitbehelpfulbothatthebeginningoftheyearwhenthebudgetiscreatedaswellasthroughouttheyearwhenunexpectedneedsmightarisetoknowwhatcanandcannotbepaidbyfundsinthebudget.

11/24/20138:25AM

39 Inreall i feIhatehiring&firingstaff.InmyhomelifeIhaveneverhadenoughmoneytohirestaff.Ipaymyunreliabledisabledfamilymemberstohelpwhentheycanandworkridiculoushourstocompensate.

11/23/201312:56PM

40 CurrentlyifIwouldl iketoknowwhatwehavespentonmyson'sbudget,IhavetocallGateways,askandreportisrun.Wouldbeniceifi twasreal-timeandIcheckmyself.Also,transportationisaseriousandexpensiveconcern.Hardtofindandwhenyoudothepric ingisveryhighandunaffordable.

11/23/201312:12PM

41 Findinggoodreliabledirectsupportstaffischallenging.Gettingmysoninvolvedinsocialoutingisevenharder...

11/23/20138:14AM

42 na 11/22/201310:32PM

43 Icareforaspousewithalzheimersandmydevelopmentallydelayed30yearolddaughterandIworkfulltime.Icannotdoallofthis

11/22/20135:24PM

44 N/a 11/22/20133:53PM

45 Individualcannotreadnorwrite,24/assistancewithallthings 11/22/20133:44PM

46 gettingthesupportandknowledgetoknowhowtomanageaserviceaccount,itisafull-timejobontopofbeingtheoff-hourcaregivers.

11/22/20132:46PM

47 UndermycurrentmethodologytheAreaAgencyhandlesthephyscialmoney...paymentisbasedoninvoiceforservices,receiptsandpayroll.Idonotmanagedirectcashanddonothavetogetinvolvedinfi l ingtaxesandworkman'scompetc.

11/22/20132:43PM

48 ThebiggestproblemIhadwithmyson'sCIHSwaiverwasthefactthatIhadtopaymoneyupfrontandthenwaittobereimbursedbytheagency.IwasessentiallygivingtheStateofNHaninterestfreeloanforasmuchas$2,000.

11/22/20131:38PM


107/155

49 doesn'tunderstand 11/22/201312:49PM

50 Icouldcheckoffmostoftheitemsabove. 11/22/201312:25PM

51 Currentlyhaveac lientdirectedplan. 11/22/201310:49AM

52 Ineedservicesdoneformygrandson,notmetomanage 11/22/201310:34AM


108/155

23.08% 120

46.92% 244

9.23% 48

20.77% 108

Q27HowwillingwouldyoubetousetheMedicaidfundsinyourannualservicesaccountasifitwereyourownmoneyinordertogetthebestvalueforthedollar?


Total 520


1 I'mconcernedwiththisidea-wouldwegetthetotalamountthatisNOWinthebudgetorwouldthestatetakeawayfundinginthebudgetl iketheyalreadydoifonegoescompletelyself-directed?I'mnotwil l ingtogetlessofservicesformysonandmehavingmorestressbydoingthis.

12/8/20138:22PM

2 Whatservicesandmanagementaresatisfactoryasis 12/8/20136:26AM

3 SinceIalreadyhaveafulltimejob,haveextensivecaregivingresponsibil i tiesandothertime-consumingresponsibil i ties,Iamnotinterestedintakingonthistask.

12/6/201311:17PM

4 notsurehowitwil l affectmyincome. 12/6/20132:37PM

5 Communicationproblemswouldbeadifficultissuebecausemysonismentallyi l l .Itworksbetterforhimtodealdirectlywithprofessionalsandformyroletobeadvisory.

12/6/201311:43AM

6 VERYveryunsure,becausewhodecideshowmuchmoneyIget,ANDIhavehavespendingproblemslikemostpeopleinthisservicecategoryfromdeprivationofaverydifficultpast..mymindknowswhattodocorrectly,butIcannotcontrolmyhabitsbecauseofpastdeprivationandoursocietyalwaysfindingwaystotrickusintospendingmoneyinworthlessways...

12/6/20139:54AM

I'dbewillingtodo

this

I'mwilling,butwould

needmore...

I'mwilling,butdon'tthinkI'll...

I'mnotinterestedin

this

0% 20% 40% 60% 80% 100%


I'dbewil l ingtodothis

I'mwil l ing,butwouldneedmoreinformationonservicecostsandqualitythanIhavenow

I'mwil l ing,butdon'tthinkI'l l gettheopportunity

I'mnotinterestedinthis


109/155

7 Ithinkthisprogramwouldtakealotofeducationandcontinuededucationasservicesandexpenseschangedandmayinturncostmoremoney.

12/6/20139:53AM

8 Notapplicabletoproviders 12/6/20139:02AM

9 Iamansweringasthemotherofalongdeceasedson.Iwouldhaveandidspendtohelphiminwhateverway.

12/6/20137:44AM

10 Idon'twanthealthcarevouchersastheconservativepoliticalpartywouldl ikeIdon'tbelievehealthcareisaentitlement,weshouldhaveanationalhealthinsurancesystemaseveryotherwesterncountryhas.

12/5/201310:54PM

11 butneedtoknowthatappropriateserviceswouldbeavailableandacomprehensiveplanagreeduponbyeachprovider.

12/5/20137:04PM

12 Currentlythestatehasrulesabouthowmuchmoneycanbespentonrespite,assistivetechnology,andactivities.Sometimeswe'rewil l ingtogiveupsomestaffsupportandfi l l inourselvessoourfamilymembercanbenefitfromanactivitythatgoesoverthethatpartofthebudgetbutwearen'tallowedtodothat.

12/5/201312:56PM

13 ThisconceptwouldbeverydifficultformostfolksreceivingtheABDwaivertodo,someguardiansandfamilymembersmaywanttheresponsibil i tybuttheyalreadymanagesomuchifthepersonintheirfamilyisinsupportedl iving,orathome.

12/5/201312:09PM

14 Needstoogreatforfamilytohandle.HadihswaiverandstaffingwasalwaysanissueanditoftenfelltofamilytocoverservicesNdle

12/5/20139:39AM

15 Iamwil l ingtodothisbutwouldneedmorefundingbasedondaughtersneeds.Ifthesystemdoesn'tgetfixed,inthelongterm,itisgoingtocostthestatemoremoneytosupporttheirindividuals.It'salotcheaperforustoassistbutsoonthatisnotgoingtobethecaseifyoudon'tfixitfunding.

12/5/20139:37AM

16 Il ikethesystemasitworksnowanddon'twanttochange. 12/4/201310:21PM

17 Astheaccountstandsnowtherearel ineitemsinthebudgetthatdonotgetusedonamonthlybasisandIfeeltiesupmoneythatcouldbeusedforotheritemsBUTthoseotheritemsarenotfundedbytheserviceplansoevenifthemoneywasreleasedfromthel ineitemitcannotbeusedforthecurrentneed.Tobeabletousethemedicaidfundsasifi twereourownmoneywouldbehelpfultopayforunexpectedneedsastheyarise.

12/4/201310:14PM

18 Duetomydaughterinthewonderfulgrouphomesheisin,herannualservicesarebil ledbyherhomeforhercare.IwouldnotwanttopresumeIwouldknowbetterthanthestaffatherhomeonhowtobil lMedicaidfortheirserviceswhicharesoimportant

12/4/20139:41PM

19 ThisiswhatIwil l bedoingoverthenextyear.Iwantafulfi l ledworkweekformyson.Somethingthatkeepshimbusy,mindstimulated,safe,andhappy.SoIwil l needtransportation,careprovider,jobtrainingforhim.,andprobablystuffIhaven'teventhoughtof.

12/4/20139:31PM

20 Icannotimagineasituationwherethemostknowledgeablepersons(mywifeandI)aboutoursonsneedswouldbegiventhefundstoprovideforhim.Ifwelefthiscaretotallyuptothestateitwouldcost~$10,000permonthforhiscare/protection/housing.

12/4/20139:19PM

21 It'sabouttimeforconsumerstohavecontrolofhowandwheretheirMedicaidfundsarespent!!!!!!!! 12/4/20138:05PM

22 Seepreviouscomment.Idon'tthinkmyfather-in-law(themainguardian)coulddothisadequately. 12/4/201312:28PM

23 IdoalotIwouldpreferherareaagencyhandlethis.Itscaresme 12/4/201310:02AM

24 Idon'treallygetthepointofthisquestion-thishasbeenexamined,studied,andreporteduponNationally,ifnotinternationally.Families_tend_totreatsuchfundsasifthemoneywastheirownandspenditwisely.Again,thereshouldbeasystemofchecksandbalancesastherearealwaysexceptions.

12/4/201310:00AM

25 Thesystemseemstoworkfinemostofthetime. 12/4/20138:52AM

26 Seepreviousanswers 12/4/20138:37AM

27 itisafulltimejobtomanageindividualswithalotofneeds....unreasonabletoexpectafamilymemberwhoalreadyworks2jobstokeeparoofoverheadandprimaryprivatehealthcareinsurance...waytoomuchtoexpectof1individual.

12/3/201311:16PM

28 Waytoovastaresponsibil i tyforfamilies. 12/3/20138:58PM

29 Ihavemanagedbeforedifficultprocess 12/3/20137:23PM

30 Ialreadydothis.Therereallyisn'tmuchmoretodo.Asidefromsomesmalladminexpense,mostofthebudgetisusedforDSP.TheDSPgetsnosignificantbenefits,soit'sprettybarebonesnow.

12/3/20134:48PM


110/155

31 Inpreparingabudgetforouryoungadult'sannualplan,Ialreadyapproacheditasifi tweremymoney.Iwasnotextraneousinrequestingwhatwasneeded.

12/3/20133:40PM

32 ThatisexactlywhatIdonowwithmyownfundsforthebenefitofmydisabledfamilymember.ThebestdecisionIhaveevermadeforthebenefitofmydisabledfamilymemberwastorejecttheinterferenceofGateways.

12/3/20131:25PM

33 Ialreadydothis. 12/3/201312:52PM

34 IthinkmorepeopleshouldbeREQUIREDtoworkthisway.Iftheycan't,theycanoptout.Toomanyintermediaries!

12/3/20139:33AM

35 AsImentionedearlier,Ialsodonothavealotoftimetomanagethisbudgetandservicesduetotheneedtoworkoutsidethehome.

12/3/20139:18AM

36 Moreandmorefamilieswantthecontrolovertheirservicesandmanageit. 12/2/20134:37PM

37 Iwouldnotwanttoreceivea1099form!! 12/2/20132:52PM

38 Mostpeoplewouldbeinterestedinthis;howeverdonothaveastrongunderstandingthatMedicaidisaninsuranceplananddoesnotpayforluxuryitems

12/2/20132:02PM

39 IgetthebestservicesfortheleastamountofdollarsthatIcan.Youmustpaystaffwelltogetqualitypeople.

11/29/20136:17PM

40 Iwonderhowthismightreducetheamountindaughter'sbudgetthatisrequiredtobepaidtoMDSasthefiscalagent?

11/29/201311:46AM

41 alreadydoingthisundertheDD525Waiver-partic ipantmanagedservices 11/27/201311:04PM

42 N/A 11/27/201311:22AM

43 Iamwil l ingtodothiswithassurancesthatthecareandproviderchoosewil lbegoodquality 11/26/201310:36AM

44 RightnowIhavealotonmyhands,inthefutureImightbeinterested,butIhavebeenextremelyluckytohavefoundatrulydedicatedcasemanagerwhotreatsmeasapersonandisinstantly"there"whenIhaveaproblemofjustneedasoundingboardoranytypeofproblematall.

11/25/20139:16PM

45 OurexperienceasavendoragencyhasbeenthatfamilieswithPDMSbudgetsdonotrealizehowmuchworkitwil l beandgetveryfrustratedwiththesystemoverallastheydonotknowallthethingsthatvendorsdobehindthescenesthatarenowtheirresponsibil i ty.

11/25/201311:20AM

46 Ibelieveitismydutytomanagethesefundswellsothatitisthereforthefutureneedsofmychildandothersl ikehim.

11/25/201311:12AM

47 Iamnotcapable 11/24/20137:34PM

48 Ifeelwealreadydothiswiththeself-directedservicesbudget.Firstandforemost,wesetprioritiesregardingserviceneeds.Thenweattempttomakesurethatthoseservicesneededthemostwhichwecannotaffordtoprivatepayforarefundedthroughthebudget.Iftheservicesareunique,rareorfarawaybutofhighpriority,theymightbeatahighercost.Butweareawarethatmeanstheirwil l belessMedicaidfundsavailabletomeetotherneedsoflesserpriority.Soobviously,thegoalistogetasmanyserviceneedscoveredaspossible;butgiventheshortageofcertainservicesinsomelocales,wearewil l ingtotravelorpaymoreforthe"rightservice."Wehavealltoofrequently"spunourwheels"acceptinglocalservicesfromlessskil ledprovidersonlytoseenoprogressbeingmade.Inthelongrun,iftheservicesareproperlydeliveredandneedsaremet,youhavelesscostsbecausemostl ikelylessdirectandancil laryserviceswil lbeneeded.

11/24/20138:33AM

49 Iamassumingthecostsofserviceswil lbetransparent.Curiousastothequestion,thereneverseemstobeenoughmoneytogoaround.Whywouldn'tonebecarefulwithit?

11/23/20131:02PM

50 EventhoughIwouldbewil l ing,howdoImanagetofindthetimetogetthepropertrainingnecessarywithoutlosingmyjob?IhavealreadytakenFMLA,allmyvacationtimeandsickdaysarereservedformedicalissuesandemergencies;so,great,yougivemeabudgettohelpmanagemyson'sl i fe...whatdoIl iveon?

11/23/20137:55AM

51 Idonothavethetimetoaddthejobofbeingmyson'scasemanager. 11/23/201312:40AM

52 Atmyadvancedageandmedicalconditionwouldnotbehelpful. 11/22/20134:24PM

53 Idon'tunderstandthequestion. 11/22/20134:10PM

54 thisisaguardianquestion 11/22/20133:44PM

55 Therearenoservicesavailableformydaughter.Idoitall. 11/22/20133:00PM


111/155

56 IbelievethatishowItreatthefundsnow.Ihavetomanagetochangesandneedsandl ivewithingthebudgetIhavebeenallocated,justasIdoformyownsalaryandhouseholdexpenses.IknowifacrisisoccurredIcouldaskforsome1timehelporlookforanannualincreasebutIacceptthatthismoneycomeswithresponsibil i ty.IcanshopwhereIwantanIdon'thavetol ivewithingpresetrates.IfIwanttopaymywoker$20/hrandhavetoadjustsomethingelseinmybudgetIamwil l ingtodothat.IcanprioritizeandshopwhereIwantbasedonmysenseofqualityandprice.

11/22/20132:48PM

57 Ithinkfamiliesshouldbeabletobecompensatedfortheirtimeandenergiesthatgointomanagingservices.Ifwedidn'tdoitsomeoneelsewouldhavetodothejobwithasalary,benefits,retirementanddaysoff.EverythingI"had"togiveuptocareforourchildandkeephimoutofaninstitution.

11/22/20132:46PM

58 Thisisnotagoodidea. 11/22/20131:59PM

59 Wehavesolidrecommendationsformedicalprofessionalsandgreattherapiststoimplementtherecommendationsbutyouhavetojumpthroughhoopstoaccessthefundingthathasalreadybeenallocatedforapprovedservices.Itmakesthewholeprocessmuchmoredifficult.

11/22/20131:55PM

60 doesn'tunderstandanyofthis.talkwithherGuaidianformoreinfo 11/22/201312:49PM

61 Ifwewereallowedtobemoreflexiblewitheachindividualsneeds,asweshouldbe.anddropalltheoverhead,thefundinggotobettermeettheirneedsandofferbetterpayfordirectcarepersonal

11/22/201311:43AM

62 Ifyouaresuggestingthatwepaystaffdirectlyorotherprofessionals,Iamnotonboardwiththis.Thereissomuchstressonafamilywithachildwhohasadevelopmentaldisabil i ty,thatputtingmoreburdenthemisunfairandveryrealisticallycouldcauseharmwiththeaddedstress.Wewanttobeaparent,andalreadyinmanyinstanceshavetobeacasemanager,researcher,physicaltherapist,occupationaltherapist,speechtherapist,behaviorist,pharmacistanddoctor/nurseinadditiontoparentthataddingmoreroleswouldbeoverwhelming.

11/22/201311:40AM

63 Rightnow,we'recontentwiththewaythingsare;unfortunatelytheAreaAgencyisn't. 11/22/201311:33AM

64 Withpayrollhandledbyathirdpartyastheareaagencynowdoes.Idonotwanttoberesponsibleforpayrollandrelatedfi l ings

11/22/201310:51AM

65 WehavebeenintheCDSprogramforapx3yearsandfindittobethebestservicemodelwe'veexperiencedtodate.Wehavehelpfromourareaagencyadvertisingandinterviewingprovider'sandsettingthebudget.Itallowsusgreaterfreedomofchoicewhenchoosingprovidersandprograms.

11/22/201310:32AM

66 thisneedstobeflexible;theabil i tyfortheAgencytodothepartsIdon'twanttodo 11/22/201310:29AM

67 Icurrentlydothissuccessfully 11/22/201310:01AM


112/155

Q28Whatarethetop4thingsthatwouldhelpyoushopmoreeffectivelyforthelong-term-careservicesandsupports

Medicaidpaysfor?Whatwouldhelpyougetthebestservicesforthemoneyyou

spend?Answered:495 Skipped:397

14.44%27

24.06%45

26.20%49

35.29%66

187

2.82

30.95%78

28.17%71

21.03%53

19.84%50

252

2.30

13.36%35

27.48%72

32.82%86

26.34%69

262

2.72

40.27%118

21.16%62

20.14%59

18.43%54

293

2.17

20.10%42

22.01%46

27.75%58

30.14%63

209

2.68

15.43%27

25.71%45

32.57%57

26.29%46

175

2.70

36.28%115

22.40%71

19.87%63

21.45%68

317

2.26

24.19%30

30.65%38

16.94%21

28.23%35

124

2.49


1 Dontknowiftheaboveoptionshave"besttoworst".Theyaareallequallyimpportanttome. 12/6/201312:38PM

Seeingthebillsoran

explanatio...Knowingwhat

serv icescost

upfrontBeingabletocomparepricesfor...Takinganactiverole

indevelop...Beingabletocompareresultsor...Talkingtootherslikemeabout...Gettingadv icefrom

acase

manag...Gettingadv icefroma

medical...

0 1 2 3

1 2 3 4 Total AverageRating

Seeingthebil lsoranexplanationofbenefitsforservicesIuse

Knowingwhatservicescostupfront

Beingabletocomparepricesforservicesfromseveralserviceproviders

Takinganactiveroleindevelopingacareplanorservicesplan

Beingabletocompareresultsoroutcomesfromserviceproviders

Talkingtoothersl ikemeabouttheirexperienceswithproviders

Gettingadvicefromacasemanagerorotherprofessional

Gettingadvicefromamedicalspecialist


113/155

2 Healthcareisparamount.IameligibleforMedicarebuthavemaintainedprivatehealthinsuranceatgreatexpensebecausemysonhasnotbeenabletoreceivesomeservicesthroughMedicaid.Ican'tkeepdoingthis.Hel iveswithmenow.Hecouldnotaffordtol iveonhisown,butIwon'tbehereforever.

12/6/20139:59AM

3 THISISWAYTOCOMPLICATEDAQUESTIONTOANSWERATTHELASTMINUTE...WEHOKNOWS,UNTILTHESYSTEMISIMPLIMENTED??

12/6/20139:55AM

4 Don'twanttodothis 12/6/20139:39AM

5 BeingabletopayfortheservicesandmedicationsIhavenow 12/5/201310:56PM

6 alltheabove 12/5/20137:05PM

7 Iwouldl ikeguidancefromacasemanagerorprofessionalwhoactuallyknowssomething. 12/5/20136:24PM

8 NOTsure 12/5/20131:53PM

9 mydaughterisinagrouphomesoIdon'thavetoshopforservicesassheisgettingthemeverydayandthehomeistheservice

12/4/20139:43PM

10 Itwouldhelpifthecommunitymentalhealthservicesweren'tmonopolies!CHOICE! 12/4/20138:07PM

11 Verydifficultquestiontoanswer. 12/4/201310:12AM

12 Donotneedmedicalaspectinanyofthesemattersnoserioushealthcareneedsmedically 12/4/20138:39AM

13 doesnotwork 12/3/20135:29PM

14 Casemanagementneedstobelocalwithanunderstandingoftheprocessandeducational/medicalhistoryofthosebeingsupportedandprioritiesofthefamily.

12/3/20133:42PM

15 Beingabletocomparepricesforservicesfromseveralserviceprovidersisalsoanimportantfactor. 12/3/20131:28PM

16 Iwouldneedhelpmanagingthisandwouldprobablywantandneedanareaagencytohelpoutorhiresomeonetokeepupwithallthethingsthestaterequires.Manypeopledonothavetheskil lsnecessarytodothis.as

12/3/201312:12PM

17 Asanindividualoutsideofthestatefundingsystem(Medicaid/DHHS/AreaAgency,etc.)Ialsothinkthatgettingadvicefromacasemgr/otherprofessionalisvitalinputtingtogetheraneffectiveLTCserviceagreement.

12/3/20139:11AM

18 beingabletonegotiatepriceandorfindanalternativethatmightinc ludeinformal/nontraditionalwaysofgettingneedsmetatabettercost.

12/3/20138:35AM

19 Thesearethetop4thingsthatIseefamiliesneeding. 12/2/20134:40PM

20 Thisformisnotallowingmetocheckboxes 12/2/20132:03PM

21 "Gettingadvice"??-Talkingtopeoplehighlyknowledgeableinthefeildandservices. 12/2/201312:57PM

22 Irunmyson'saccountsl ikeahomehealthcarebusiness.Istretchthedollarsasfarastheycango. 11/29/20136:19PM

23 Thisquestionisnotapplicabletomysituation 11/27/201311:30AM

24 N/A 11/27/201311:22AM

25 Developeabetterwaytofind/choosehealthcareprofessionals.Rightnowitishitormiss.Evenifyoulikeyourphysic ian,thatdoesn'tmeanthathe/sheistherightoneforyouandyourneeds.Sometimesthatknowledgecomesataveryhighprice...whenit'stoolate.

11/25/20139:16PM

26 Ican'tansweranyofthequestionsonthispageeither 11/25/20138:26PM

27 Thisquestionisconfusing…is'1'thetop…ordidyouwantustoselect4itemsandratethem?Ialreadyknowupfrontthecostofmydaughter'ssupportservicesandsignoffontimesheets.Ialreadyplaythekeyroleindevelopinghercare/servicesplan.Ialreadyrecruit,hire,andtrainsupportstaffanddeterminetheirhourlywage(withinthemeansofmybudget…theydeservetobepaidmore,butIhavetobeextremelyfrugalinordertoensureIdon'texceedmybudget).Idothisbecauseofmydaughter'sveryuniqueandindividualneedsandtosavemoney.Youcouldpaymeformyservices…thatwouldbenice.Iamthemostqualifiedandexperiencedpersonformydaughter.

11/25/201310:02AM

28 moresupportinhiringdsps 11/24/20137:28PM


114/155

29 Theproblemwithcomparingoutcomesorresultsfromserviceprovidersisthatthedatacanbe"cooked."Biggerinstitutionscanaffordtodedicatetimeandmoneytocollectingandreportingoutcomesthatmakethemselvesappearsuccessfulwhilesmallerprovidersmaynothavetheadministrativetimeorresourcestodoso.Yet,inmyexperience,someofthesmallerprovidersofferamorecomprehensiveandpersonalizedapproach,whichisneededwhenworkingwithindividualswithcomplexandmultipledisabil i ties.Itisn'talwaysfairtoburdenthesesmallproviderswhofocusmoreonservicedeliverywithmoreadministrativeworkandcanactuallydetractfromthequalityoftheirservices.

11/24/20138:39AM

30 IfIhad1through4IamassumingIwouldhaveanactiverole.Gettingadviceisnumber1asIcan'tknowwhatIdonotknow.Idon'tnecessati lyknowwhatisavailableorwhatisappropriatetotheindividual.AllImightknowisthatthereisaproblemIneedhelpwith,Iwouldhopethatifthecasemanagersuspectedamedicalspecialistwouldhelpthey'dreferus.

11/23/20136:10PM

31 Notafairquestion.Manythingsgointoplanningandatanygiventimeallofthesethingsareimportant.

11/23/20138:17AM

32 Knowingthattheserviceproviderswerereputable,thoroughlychecked,andtopsintheirfield.Iwouldliketoknowthatthepersoncaringformychildactuallywantstobeintheirchosenprofession,andcaresabouttheout-come.Theyshouldn'tbeburnedoutorjustservingtheirtimetomoveuptheladder.

11/23/20138:01AM

33 Ihadtotakecareofmymotherinthelastyearsofherl i fe,andtheonlyimportanttingisdealingwiththelackofqualitystaff..Astressfulnightmare,

11/23/201312:42AM

34 Idon'tthinkIcouldhandlethis. 11/22/20134:26PM

35 1.TakinganactiveroleindevelopingaservicesplanANDbeingINVOLVEDinENSURINGtheplanisCARRIEDOUTASINTENDED.

11/22/20134:14PM

36 Havingservicesavailablethereisnothingavailable 11/22/20133:02PM

37 Idonotwanttohavetoselectfrompre-determinedproviders.Idon'thavetodothatknow.Icanhiremyneighbor,afriend,relativeorstranger...Iwouldnotatalll ikethattobetakenaway--soIdonotknowhowtoansweryourquestionswhereyouusethetermprovider,asifi twasapreexisitingentity.

11/22/20132:50PM

38 Inorder(1-4),Knowingwhatservicescostupfront.,Beingabletocomparepricesforservicesfromserviceproviders.,Beingabletocompareoutcomesfromserviceproviders.,Gettingadvicefromacasemanagerorotherprofessional.Ofcourse,beingdysarthric ,Iwouldneedtodothisonl ine.

11/22/20131:44PM

39 Familymemberisnotabletodothisontheirownbecauseofdevelopmentaldisabil i ties 11/22/201312:24PM

40 Havingthetimetodoallofthis,workmorethanfull-timeandhavesomesemblanceofl i fetomylife 11/22/201311:36AM

41 Preparemygrandsontol iveonhisown 11/22/201310:36AM


115/155

Q29WhatLong-Term-CareservicesandsupportsshouldbeaddedtotheNH

Medicaidprogramthatarenotavailabletoyounow?


# Responses Date

1 Knowingwhatmytotalbudgetisandwherethemoneyisgoing. 12/9/20136:43PM

2 theyprobablyalredayhavetheservices.Ijusthaveneverbeenabletogeyany. 12/9/201312:41PM

3 Beingpaid. 12/8/20138:30PM

4 ifpeoplewerepaidadecentwagetheymaystayandourlovedoneswouldnotseesomanypeoplecomeandgo..peoplewithdevelopmentaldisabil i tiesshouldbetreatedwithrespectitishardforthemtoacceptchangeandthatiswhathappensbecauseofthelowwage

12/8/20137:40PM

5 Transportation 12/8/20137:18PM

6 Communitymeetingandl ivingplaceswhereonecangoandfeelcomfortable.Notamallorchurchbasement.

12/8/20134:30PM

7 Notsure 12/8/20139:55AM

8 Increaseinsupportstomorereadilyensureapositiveoutcomeinmeetinggoals. 12/7/20134:30PM

9 Themostimportantthingisagoodcasemanagerwhoseesthewholepicturesomychild'sservicesarenotfragmented

12/7/201312:02PM

10 Dentalcareisagapingholeinthecurrentservicesystem.Byneglectingthisaspectofaperson'swell-being,manyotherhealthissuesarecreated,costingmoremoneyinthelongterm.Thisisaveryshort-sightedpolicyandshouldberemediedsoonerratherthanlater.Thereisagravelackoffundsforc lothingavailabletopeoplewithdisabil i ties.Althoughmydaughterismiddle-aged,Icontinuetocontributeheavilytowardherwardrobe,longpastthetimeIwouldexpecttodothiswithatypicaladultchild.Weareencouragedtotreatouradultchildrenwhohavedisabil itiesastypicallyaspossible,andrightlyso.Yettheyarel ivinginpovertywithfewoptionsforemploymentorabil i tytoprovidetheirownclothing.Howcanweexpectapoorlydressedpersonwithdentalissuestobeofferedajobandthusworktowardself-suffic iency?

12/6/201311:28PM

11 resitecareforpeoplewithmentalhealth 12/6/201311:23PM

12 Intergratedcarewithothermedicalproviderssuchasaspecialistasneeded 12/6/201310:27PM

13 Respiteforfamilies 12/6/20135:39PM

14 Iamnotsure,inparticularbecauseIdonotknowwhatisnotavailabletousnow. 12/6/20134:42PM

15 morefunctionalsupportaswellasAcutecareserviceinterventionalservices 12/6/20134:03PM

16 easeintransferringmyadultsoncurrentlyl ivinginMIwithSSI,Medicaid,foodstampsandfoodpantrytosimilarservicesinNH

12/6/20133:47PM

17 PreventativeDentalCare 12/6/20133:35PM

18 mymomdoesnotneedtheseservicesrightnowbutwil lneedthemshortly.Morehelpisneededtokeepmylovedonehomelonger.Likemoreadultmedicaldayprogramswithflesibil i ty.Morerespitecare.

12/6/20132:57PM

19 residentialservices-grouphomeforstepdownunti lreadyforcommunitybasedservices 12/6/20131:50PM

20 Adultdayprogram 12/6/20131:16PM

21 wIderpublic InformationaboutTHEEARLYSIGNSOFMENTALILLNESSWHENPERSONISCHILDORUPPERTEEN!

12/6/201312:39PM

22 Mentalhealthservicesneedtobestrengthenedandincreased.Ourmentalhealthsystemis"broken"andstrugglesvaliantlytoprovidethebasicservices.

12/6/201311:46AM


116/155

23 Amentalhealthcasemanagementsystemgearedtowardindividualswhoarereluctanttoseekhelpthroughthecurrentsystem.Forexample,havingtheRiverbendcounselorsmeetc lientsatmedicalofficesratherthanattheRiverbendoffice.Maybethisconceptcouldbeexpandedtowardcasemanagement.

12/6/201311:45AM

24 Nonmedicalservicesthathelpkeeppeopleathome,suchasgroceryshopping,pharmacydelivery,personalcare,etc.

12/6/201311:39AM

25 Transportationcostaarenotrealistic forpeoplewholiveinruralareas.Adjustmentstofundingbasedonlocation(s)ofc lientandservicesprovidedtothem.

12/6/201311:29AM

26 bettermentalhelpcoverage 12/6/201311:21AM

27 HALFWAYGROUPCOUNSELING,JOBASSISTANCE. 12/6/201311:10AM

28 Transportationforaging.Moreemploymentsupports.ConsumerDirectionforaging.Morefamilysupport/respitecare.

12/6/201311:02AM

29 Psychiatric Servicesforbraininjuriesandresultingmentali l lnessthataffectsfamilies-legalrepresentationwhennecessary,andfinancialmanagementassistance.

12/6/201310:09AM

30 Icouldfindanapartmentformysoninmytownwithinwalkingdistance,buthewouldhavenothingtodoalldayandnowheretogo.Hehasschizoaffectivedisorderandworkswellwithoneotherpersonwhoisnonthreatening.Hecouldfollowsomeonearoundandhelpthem,orcouldusesomeonetogethimintoaslowpacedparttimesituationwherehecouldworksidebysidewithsomeone.Heisofaverageintell igenceandhasaptitudesinvisualareas.Heisalsological,kind,andhasaninterestingsenseofhumor,butafraidofhisownshadow.Heneedssomeonetochecktobesurehetakeshismeds,whichheusuallydoes,butwhenheforgetsjustonecourseeithermorningorevening,itreallythrowshimoff.

12/6/201310:06AM

31 MedicaidBenefitsshouldnotdependonapartnersmoney,esp.inlongtermnursinghomecare.ThereshouldbeNOSPENDDOWNS...this??moneyallocationproblem??shouldbehandledinadifferentway....peoplegowithoutneededmedications&allkindsofhealthservicesbecauseofthis.ALLDENTAL&EYECAREHealthSHOULDBEINCLUDEDinMedicaidservices.

12/6/20139:58AM

32 ABAtherapy. 12/6/20139:56AM

33 Asmallgrouphome(about3residents)withdrop-inservicesforaroundthedinnerhour 12/6/20139:40AM

34 NHH 12/6/20139:35AM

35 financialhelp,localactivitiesthatmywholefamilycanpartic ipatein.IEPassistanceandmoreoptionsformydisabledchild.

12/6/20138:42AM

36 Careforthosethatareincarcerated. 12/6/20138:22AM

37 Helpwithprovidingqualitycareaswellashelpwithrespitecare.Hemayalsobeapersontobenefitfromjobcoachingandindepentl iving.

12/6/20138:09AM

38 Supportgroups 12/6/20136:52AM

39 notfamiliarwithalltheoptionsnow...needmoreeducation. 12/6/20136:24AM

40 none 12/6/201312:37AM

41 Individualizedandinhomesupports.Crisisandrespite.Familysupports 12/5/201311:53PM

42 longterminstitutionalizationinconcordstatehospital 12/5/201311:25PM

43 Mentalhealthshouldhavethesamelevelofsupportsavailableasotheri l lnessesanddisabil ities. 12/5/201311:09PM

44 Psychservicesshouldbepaidintotal.Toomanythingshappentopsychpatientswhentheydon'tgettheservicestheyneed.It'sexpensivetohavementali l lnessesandnottobeabletogethelp

12/5/201311:00PM

45 dentalcareforc leanings,xraysandfi l l ings. 12/5/201310:48PM

46 Consistentmedicalcare 12/5/201310:27PM

47 Dental 12/5/201310:26PM

48 Transportation,someonetohelpwithAdl's 12/5/201310:14PM

49 Dayprogramsorc lubhouseformentalhealthrecovery/reintegrationintocommunity. 12/5/20139:54PM

50 Moreavailableagency'sformentali l lness.. 12/5/20139:54PM

51 supportedaffordablehousing 12/5/20139:44PM


117/155

52 Registerednursetoaccompanymybrotherhomeforvisitsthatarefunded.Wehavenowaytocareforhimduringvisits

12/5/20139:41PM

53 Visionanddentalcare 12/5/20139:39PM

54 Dentalcareandwellnessservicessuchas"InShape"andNutritioncounseling. 12/5/20139:24PM

55 Mentalhealthservices 12/5/20138:55PM

56 ADLsupport,certifiedc lubhousesupport 12/5/20138:49PM

57 Dual-DiagnosisTreatmentprograms.Therearenoneinourstate.WetraveledtoBostontoreceivetheseservicesforourson.Researchshowsthereisahighrateatwhichmentalandsubstance-usedisordersoccurtogether.Yetourstatehasnoprogramstosupportthisvastc lientbase.Alsoagain,EmergencyRoomsmustbebetterpreparedanddesignedforpatientsexperiencingamentalhealthcrisis.Inmyopinion,ourcurrentsystemexacerbatesthesituation.Supportneedstobereadyonceapatientisreleasedfromthestatehospital.Unfortunatelyforourfamily,thathasnotbeenthecase,evenwithamorethanreasonableleadtimepriortodischarge.

12/5/20138:41PM

58 Supportforthec lientwhowantstoremainfunctioningatahighlevelassociatewithothersofsimilarcapabil ities

12/5/20138:39PM

59 Showerchairforadultsnotonlypediatric patients.Weweredeniedonrecently,whichmakesitmuchhardertocareformysister.

12/5/20138:34PM

60 Whatisoutthere? 12/5/20137:48PM

61 Grouphomesformentalhealthpatientswhoendupatstatehospitalalotandneedatransitionaloption

12/5/20137:46PM

62 1.independentl iving/apartmentswithservicessuchas,onsitemanagerandcasemanagers.2.mentalhealthinpatientcareinlocalhospitalsorfac il i tiesthatprovidecomprehensivedischargeplanningwithpatientandfamilyforoutpatientservicesandcasemanagement.

12/5/20137:08PM

63 Needmorehelpforsupportedemployment. 12/5/20136:50PM

64 Interagencyinterface.Integratedsupportiveservices. 12/5/20136:43PM

65 Makesuretheservicesareintegratedsothattherearementalhealth,healthandrehabil itationservicescoordinatedintoonholistic plan

12/5/20136:34PM

66 Iusementalhealthhospitalizationsincrisis,helppayingforprescriptionsandcouselingservices.Allofthesearecoveredformeatthistime.

12/5/20136:25PM

67 Supportfromsomeonewhocanhelpmakelongtermplansandguideafamilytoaplanthatcaresforthedisabledpersonandmakessurethecaregiversarenotsooverburdenedthattheycannotcontinuetoprovidecare.

12/5/20136:25PM

68 Leavethecurrentsystemalone. 12/5/20136:17PM

69 Reevaluationsandpostmortemanalysis' 12/5/20136:15PM

70 Helpwithindependentl ivingskil ls,supportedhousingoptions. 12/5/20136:01PM

71 Biggerbudgets! 12/5/20135:24PM

72 Don'tseemto 12/5/20133:09PM

73 visitingnursesseveraltimesaweek. 12/5/20132:06PM

74 Coverageofdentalcostsforindividualswhorequireanesthesiaandhospitalservicesinordertoreceivedentalcare.

12/5/20131:28PM

75 Housekeeping.Sometimesit'simpossibletodoeverythingwhencaringforsomeonewithadisabil i tyandourfamilywouldprefertoprovidethecareourselvesandnotworryaboutc leaningthebathroomorwashingthefloors.Ourfriendsinanotherstateusedtohavethisserviceanditwasagoodsend.

12/5/20131:01PM

76 Transitionalapartmentsettingsandtheavailabil i tyofspecializedoutpatientdayprogramsforpeoplewithABI/TBIl ikeexistinMaine,somorefolkscouldgetintermittentsupportsandc linicaloversight,notjustoutpatientservicesjustpostABIandthenitisover.

12/5/201312:12PM

77 Moreregisterednursehoursforthosewhoneedmorehelpathome,inc ludingdayservicesandrespite.Moredecentlongtermcarehomesforthoseunabletoremainintheirfamilyhomes.

12/5/201311:26AM

78 Dental 12/5/201311:07AM

79 Eliminatetheassetcap.Ifyouneedtheservices,yougetin. 12/5/201310:23AM


118/155

80 Dentalcareintoadulthood.Childneedstogointooutpatientforc leanings. 12/5/20139:41AM

81 Havingtheabil i tytohiresomeonetobringmydaughterintothecommunity.Havingherbepartofsocietyiskeyforeveryone.Sheshouldbegiventhesameopportunitytol iveagoodlifejustl ikeyouandI.

12/5/20139:39AM

82 Grouphomesorstaffedapartmentsavailableintheseacoastareaforintellectuallyandmentallychallengedyoungadults.

12/5/20138:51AM

83 Morerespite---thereshouldNOTbeacutoffindollarsspent.Wehaveabudgetbutareallowedalimitedamountofdollarsfromthatbudgetforrespite.Itshouldbeuptoushowmuchwespendonrespitefromthatbudgetaslongaswestaywithinthebudget.Thisalsoappliestorecreation.

12/5/20138:49AM

84 Weareluckytohaveeverythingcovered:-) 12/5/20137:41AM

85 Transportationtoandfrompaidemploymentastherecipienthascomesofarandmayhavetoquitthejob.Thisjobhasincreasedtherecipient'sindependenceandsenseofresponsibil i tyfarpastwhatshewasevercapableofprior.

12/5/20135:30AM

86 coverageforcompoundedmedications,coverageforanydoctorprescribednutrition,vitaminsandsupplements.Allincontinencesupplies,inc ludingcreamsandc leansersandespeciallymoreabsorbentproductsnotjusttheapprovedlistthatoftenfail.Speech,OT,PT,VisionandanyotherTherapiesforpeopleover21yearsofagetomaintainacquiredskil lsfromchildhood.FullDental(c leaningasneeded,extractionsandfi l l ings)forpeopleover21yearsofage.

12/4/201310:28PM

87 Residential 12/4/201310:23PM

88 Helpwithfindingandfinanciallyaffordinganapartmentsothatpersoncanl iveindependently. 12/4/20139:53PM

89 Iamoneoftheblessedoneswhohastheirchildwhoneedssomuchmedicalandphysicalsupporttobeinawonderfulactivegrouphome.Agrouphomeissomuchmorel ikehomethananinstitutionalmodell ikeCedarCrestorCrotchedMountain.Bothareimportantforacutecasesbutforthemultipledisabledandmedicallyfragileagrouphomeisamuchbettermodelforlongtermcare.Havingmedicallycertifiedpeoplewithonenurseoverseeingthestaffseemsmorecosteffectivetoo.Weasparentsarenotnursesanddoctorsbutwecanchangegtubes,monitorseizures,changediapers,dressingsetc.soIseeagrouphomeasawonderfulexampleoflongtermcareservicessoIfeelIgetthebestsupportatthistime.

12/4/20139:47PM

90 Iwil lletyouknowonceI'minfulltime. 12/4/20139:35PM

91 Moreflexibil i tyandbetterfundingforrespiteandotherservicesthatallowfamilycareproviderstotakeabreak.

12/4/20139:23PM

92 Transportation 12/4/20138:08PM

93 PhysicalTherapy,OccupationalTherapy,equipmentwhenneeded,shouldn'thavetowait5yearstogetaneww/cthatyou'veoutgrown2yearsago.

12/4/20137:13PM

94 Ihonestlydon'tknow,butsomethingl iketheextraPT/OTwhichEasterSealsprovides(usedtoprovideusbeforeschedulingconfl ic ts)wouldcomeinveryhandyformydaughter-shecurrentlygetssomeofthiswithschoolbutshereallyneedsmore.

12/4/20136:39PM

95 Professionaloutreachhelpforsupport,encouragement.Emergencyphoneaccesstohelptalkthroughcrisestimes.Professionalstohelpnavigatethecomplexitiesofthesystem.Communitymentalhealthcentersareextremelyimportanttotheindividualindiagnosing,treatment,recoveryandservicesforthoseinfl ic tedwithal i felongchronicmentali l lness.

12/4/20134:03PM

96 Musictherapy,PerdeimorsomekindofplacetobeabletogotohiretrainedaidestoworkwithmyDaughter.IhavebeenlookingformonthsforanaidethatisqualifiedtoworkwithmydaughterattherateofpaythatIcanafford.Adaptiveequipmentforspeech.Homemodifications,wheelchairvans,Volunteerworkformydaughterpartofherserviceagreement,agoalactuallybutnoonecanseemtohelpmewiththis.NotDeptofED,Vocrehab,MooreCenter,IndependentLiving,Devdiscouncil.

12/4/20133:22PM

97 Dentalpreventativecare 12/4/20133:15PM

98 Someonetoassistwithhygieneanddailycareactivities. 12/4/20132:40PM

99 homecareproviderfunds 12/4/20132:10PM

100 findingouthowmuchservicescost. 12/4/201312:55PM

101 Apoolofrespiteproviderswhoaretrainedindisabil i tyissuesavailableandfamiliarwithc lients 12/4/201312:53PM


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102 Betterdentalandeyecareinc ludingbeingabletoreplaceeyeglassesaftersomanyyearsanddenturesaswellasMedicaidpayingforthecostofbatteriesforhearingaids,andalsoforMedicaidtowidentheparametersforpayingfortransportation,ie.transportationtoandfromdialysis.Afterdialysisseniorsforthemostpartarenotabletodriveafterthetreatmentbutarehavingtopayupwardsof$100.00tobetransportedbacktotheirhome/facil i ty.

12/4/201312:02PM

103 dental 12/4/201311:51AM

104 None 12/4/201311:51AM

105 Preventativedentalcare 12/4/201311:39AM

106 Residentialplacementwherewewantoursonandwherehewantstobe. 12/4/201311:10AM

107 1.Morechoicesinmentalhealthservices.2.Afterhoursphonenumberfortheregionagencyincaseofemergencies.

12/4/201310:45AM

108 Dentalcare,morefundingfortransportation,betterwagesfordirectsupportproviders 12/4/201310:32AM

109 Dentalservicesforadultssotheydon'tlosetheirteeth.Goodteethareimportantforaperson'soverallhealth.

12/4/201310:13AM

110 Dental.Anddividingthemoneyinawaythatmeetstheindividualsneedsnotautomaticallygivingmostofittodayservices

12/4/201310:04AM

111 Stabil ity.Don'tsummarilydismisstheonewordanswer.Instead,thinkaboutitsramifications.... 12/4/201310:03AM

112 betterhousingoptions 12/4/201310:02AM

113 Moremoneyallocatedtoeducation/physicalactivities/dailycommunityinvolvementactivitiesandthetransportationtogettotheseactivities.

12/4/20139:47AM

114 Iamnotcertain.Iwouldl iketoseedenturesinc luded. 12/4/20138:53AM

115 Notsure. 12/4/20138:48AM

116 Morerespitepeopleavailableandtrainedproperly 12/4/20138:39AM

117 decentdentalinsurance 12/3/201311:25PM

118 Continuingeducation 12/3/201310:30PM

119 Dentalservices 12/3/20139:19PM

120 Logical,safeandeffectivecongregatedcommunitiesformysontobeapartofandtol ivein. 12/3/20139:00PM

121 Iamnotsure. 12/3/20138:22PM

122 Vision&dental. 12/3/20136:46PM

123 familyproviders 12/3/20135:45PM

124 MorecrisisMHbeds&intermediatecareoptions. 12/3/20135:18PM

125 Notsureifi tisavailableornot,butwearenotgoingtobeabletocareforoursonforever.Theremaycomeatimewhenweneedhelpourselves.Providingaroundthec lockcareforoursonwil lbenecessarywithinprobably10yearsforusaswewon'tbeabletophysicallyattendhisneeds.Supposewedon'twanthimtogotofostercareorgrouphome,providingaroundthec lockcareathomewouldbeniceandpossiblycosteffective.

12/3/20135:05PM

126 Notsure 12/3/20135:00PM

127 Moreintegratedmentalhealthservices,moresupportivejobopportunities 12/3/20134:49PM

128 n/a 12/3/20134:37PM

129 Idon'tknow. 12/3/20134:29PM

130 Preventativedentalcareforadults....oratleastanextensionofpreventativedentalcaretoage26tofollowinsyncwithHealthcareact.Thismayprovidemoretimeforimprovedoralhygieneandlessproblemsdowntheroadasanolderadult,hencelesscostlongterm.IncreasedfundingforconsultationforOT,SpeechandPTsupportasanadult.Directserviceisnotnecessarilybenefic ialatthispoint,butconsultationandtrainingtostaffwouldbe.

12/3/20133:45PM

131 Idon'tknow 12/3/20133:42PM

132 Homeassistance 12/3/20133:23PM


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133 Mymomshouldbepaidwhateveranotherfamilyhousingprovidershouldgetfortakingcareofme.It'snotfairtoforcehertoworksohardjustbecausewewanttostaytogether.Mymomhastoworktopaythebil lsaswellasjugglemy24/7care.Thisisverystressfulbecauseshecan'tdoeitherverywellinthisscenario.Shehaslostmanyjobsbecausemycareneededprioritysometimes.Ifshegotpaidwhatyouwouldpayastrangertotakecareofme,shewouldn'thavetoworkoutsidethehomeandIwouldbebettertakencareofandshewouldbelessstressed.Thisinc ludesgivingherfreehealthinsuranceasthisisveryexpensiveandcaregiversneedmentalhealthsupport,etc.

12/3/20131:13PM

134 Dentalandlocatinghearingaidspecialiststhatyouworkwith 12/3/201312:54PM

135 Individualizedhousingoptions 12/3/201312:42PM

136 TheTheabil i tytoseemonthlybil lsastowheremymoneyisgoing.Manyfolkswouldbehorrifiediftheysawtheiractualbreakdownandwhoisgettingthemoneyfromtheirbudget.Theabil i tytochangeabudgetifneededduetounforeseenc ircumstances.

12/3/201312:14PM

137 qualifiedprovidersofautismtreatment 12/3/201312:10PM

138 Continued,reliable,andcompetentinhomecare. 12/3/201311:48AM

139 bettertransportationassistance 12/3/201311:47AM

140 DONTKNOWWHATISAVAILABLETOMENOW 12/3/201311:19AM

141 Specializedmedicaltestingl ikeEEG.Expandondentalcareandaddorthocare. 12/3/201311:13AM

142 Ithinkspousesshouldbeabletobepaidtoprovidesomeservices. 12/3/201311:09AM

143 dental 12/3/201310:08AM

144 IneedtoknowhowandwhereIwil l transitionmysonwhenIamnolongerabletocareforhimmyself.Whatresidentialservicesareavailable?I'veheardofveryl i ttlebeingavailable.

12/3/20139:36AM

145 additionaleducationsupport,bothcreditandnoncreditaswellasmorehelpwithjobs(inquiryandplacement)

12/3/20139:33AM

146 TheonethingIcanthinkofthatseemstobelackingisservicesinmoreareasforindividualswithbraininjuries.Theremayalsobealackoflocalservicesforotherdisabil i tieshowevermyexperienceiswithTBI.Outsideofamonthlymeetingatourareaagency,therearevirtuallyNOactivities/servicesinsouthernNHformysontotakepartin.

12/3/20139:13AM

147 moreprogramsforthec lientswhoarenotworkingandhaveMR..SinceJan1focusingmoreonemploymentseeking..

12/3/20139:00AM

148 Amenuofservicesthatcovermylovedonesneedsastheygetolderwithouthavingtochangeordrasticallyaltertheplanofcare.Forexamplehisneedsarenotmedicalorfunctionalatthistimesohisplandoesnothavethis.Ifhedoesneedthesethingsandtheyarenotinhisplanwehavetobeonawaitingl ist.

12/3/20138:38AM

149 noidea 12/2/201310:59PM

150 Unfortunatelynotsureallofwhatisavailablenow! 12/2/20138:26PM

151 notsure 12/2/20138:10PM

152 Dental 12/2/20136:24PM

153 BeingabletoseethespecialistsIneedtoseewithoutapriorauthorizationthatisdeniedbasedonmoney.Foronceitwouldbenicetogettherightdiagnosisandtreatmenttomakemefeelbetter.regardlessofmoney.

12/2/20136:04PM

154 Thesystemallowsfortheservicesthatmyfamilymemberneedsbutthefundsarenotavailabletopayforthemsotheycan'tbeprovided.Exceptforthecurrentbudget,theStatehasforseveraldecadesannuallyreducedfundsforthesocialserviceprograms.

12/2/20134:44PM

155 Dental 12/2/20133:56PM


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156 Whenafamilycaresfortheirchild/adultchild/wardbothresidentiallyandfordayservices,theyarepaidalowerstipendthantheHomeCareProvidersarepaid.TheyalsoreceivelessSocialSecurityforRoomandBoard,asthestandardofneedisdecreasedwhenanindividualresidesathome.Thisisnotright!Familiesaremoreinc linedtospendthefundingontheirdisbledfamilymemberandtheirfamilymembersneeds.Parents/FamilyGuardianslovetheirfamilymemberandareconnectedtotheindividualwithdisabil i tiesemotionally.Theytrulywanttheverybestcareforthemandwil lnotsettleforsubstandardcare,justsothattheycouldgetmoremoneyforthemselves.Familiesmakesacraficeseverydaytoinsurethattheindividualiswellcaredfor.ThisisnotthecasewithHomeCareProviders,whowouldn'tdoitwithoutthepaycheck,andwhowouldfeedthemcheaplousyfoods,ornottakethemanywhere,justsothattheycouldmakemoremoneyforthemselves!

12/2/20133:06PM

157 SubstanceusetreatmentRespite 12/2/20132:04PM

158 dental 12/2/20131:58PM

159 -Instrumentalactivitiesofdailyl iving(IADLs)-Respitecare-Supportivehousing-Employmentassistance

12/2/20131:03PM

160 Transportation;Dental;increasedcommunityinvolvementbeyondspecializedproviders; 12/2/201312:53PM

161 pt,ot,sp 12/2/201312:09PM

162 Helptosetupabudget 12/2/201311:28AM

163 PaymentforEmergencyexpensesl ikefuel,food,uti l i tiesChoreservicesl l ikesnowremoval,lawncare,plumbingrepairs,householdrepairs

12/2/201310:52AM

164 Moreprovidersavailableandnotsomanyrulesandl imits. 12/2/201310:51AM

165 Wedon'tgetanything.We'renoteligible. 11/29/20137:18PM

166 Easieraccesstowhattodotoeaseintohavingyourchildmoveoutintotheworld. 11/29/20136:20PM

167 Incaseofamedicalemergencyforthecareproviderthereisno"placement"thatcouldkickinshortterm.Andthereisnotenoughmoneyinthebudgettotake24/7careincasetheprimaryprovider(me)isinthehospital.

11/29/20131:39PM

168 Annualtrainingforproviders. 11/29/201311:52AM

169 Dentalcare 11/28/20138:38PM

170 Noneneededatthistime 11/28/20133:46PM

171 Massagetherapy.Ithasbeenthemosteffectivetherapythatkeepsmyc lientmobileandcomfortable 11/28/20135:48AM

172 somesortofstipend/salaryorotherbenefits(familycaregiversbeingofferedhealthinsurance,carinsurance,dental,etc)inappreciationofalltheydonatetothestatebykeepingadultfamilymemberswithDD/ABDathome.

11/27/201311:10PM

173 Grouphousing 11/27/20131:41PM

174 Idonotknowofanyinourcurrentsituation 11/27/201311:30AM

175 dentalcoverage 11/27/201311:23AM

176 preventativedentalcare.Iwouldl iketoseethatavailabletomysononcehetransitionstoadultMedicaid.

11/27/20139:11AM

177 notsure 11/27/20138:50AM

178 dentalservices 11/27/20138:49AM

179 servicesfor18-21yrsold.qualitycareandgrouphousingorassistanceforhousingetc.qualifiedgoodstaffincomestobeabletokeepstaff.

11/26/20135:34PM

180 AppliedBehavioralAnalysis 11/26/201312:40PM

181 moresupportforemploymentopportunities 11/26/201312:06PM

182 dental 11/26/201311:56AM

183 Morehomecareprovidersforthefamilieswhofindthemselvesinthepositionofhavingtohavetheirfamilymembersl iveoutsidetheirhomeduetohealthissuesoraging.

11/26/201311:41AM

184 MoreprofessionalswhoacceptMedicaid 11/26/201311:11AM


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185 Transportation-wepurchaseavehic leforourfamilymemberwhichallowshimtoleadanactiveandfulll i fe.Withoutourabil i tytodothathewouldbeseverelyl imited.Wereceiveassistancewiththedaytodaycostsoftransportationbutthelargestcostisthepurchaseofthevehic lewithwefund.Itwouldalsobehelpfultohaveaccesstoindividualsforshorttermbackupwhenstaffarei l l /vacationing,etc.Itisnotpossiblewhenrunningyourownbudgettohave"staffoncall"fortheseinstances.Thisplacesasignificantburdenonthefamilyactingascaretakerandtryingtomaintainemploymentthemselves.

11/26/201311:04AM

186 moreknowledgeabouthowtoaccessserviceswhilekeepingcostinmindmoreeducationontheprocessandwhatparentscandotohelp

11/26/201310:39AM

187 Respitecareforfamiliesofchildrenandyouthwithemotionalandbehavioraldisorders.Shorttermintensivetreatmenthomeoptionsforchildrenandyouthwhodonotneedhospitallevelcarebutdoneedabriefintervention/break.Youthpeertopeersupports.

11/26/20139:44AM

188 socialtransportation-groceryshopping,errands,visits 11/26/20137:52AM

189 Osteopathicserviceshavebeencutbackon,sobythetimeI'dbemakingheadway,Iwouldn'tbeabletogoanymore.Also,thisisoneofthethingsIdon'tknowenoughabout,isacupuncturecovered.Ican'thelpthinkingthattherehastobeawaywithoutnarcoticstocontrolpain/symptoms.Sometimestakingmeds.bringsonotherproblemsordependency,bothareequallyunacceptable.

11/25/20139:20PM

190 Helpwithemergencyfuelforhomeheatingoil,especiallywithkidswithchronichealthissues. 11/25/20138:52PM

191 donotknow 11/25/20135:39PM

192 Appealingresidentialcare;moredaytimeactivitiesfordisabledadultswhocannotwork. 11/25/20133:02PM

193 ABAforkidswithautism. 11/25/20132:09PM

194 Iwouldl ikethesupportedoptionofcreatingacommunityofmysonandhiswell-matchedpeers(fromattendingpublic school)tol ivetogetherinacongregatedl ivingfac il i tyl ikeasmallfraternityhousethatcouldbesupportedbyallofthefamiliesthatalreadyknoweachother.

11/25/20131:58PM

195 DentalCare!Prevention,Maintenance,andsupplies. 11/25/201311:22AM

196 ABATherapyforAutism…thismustbeastandardofcareforchildrenwithautism.Sensoryequipment,swimmingpoolsandalternativetherapiesl ikeHorsebackriding,gymnastics,artandmusic.Childrenwithautismaresodifferentintheirneedsthatitisdifficulttofittheminthecurrentmold.

11/25/201311:17AM

197 nonenoted 11/25/201310:10AM

198 1.ABA/behavioralservices…objectivelyproventreatmentforindividualswhoexperienceAutism.ThisshouldbeprovidedespeciallysinceConnorsLawwasenacted.TheNHmedicaid(Step1)shouldprovideaccesstotheseservices.2.Preventativeadultdentalandoralhealthcare…wecoulduti l izethenewmodel-'mid-leveldentalproviders'otherstatesandcountriesuti l izedsuccessfullytomeettheneedsinourstateandcutcosts.Weallknowthatyouroralhealthimpactyourovergeneralhealth.It'sshockingthatwedon'talreadyprovidethis.Mid-levelproviderswouldbekeyinservingindividualswholiveinareaswherewehaveextremeshortagesofdentists.OverallIfindthatbecauseNHhasoneofthelowestmedicaidreimbursementratesdoctorsandspecialistsdon'twanttobehassledbyservingthispopulation.

11/25/201310:10AM

199 Myunclerec ievestheservicesheneedsrightnow.Wehavenoconcernsaboutthequalityofhiscareorsupportsandhavebeenverypleasedsincehemovedintohishome7yearsago.

11/25/20139:56AM

200 icannotanswerthis,sincemysonjustenteredintotheadultservicesprogram. 11/25/20139:16AM

201 Anetworkofsocialopportunitiesforadultswithdisabil i tiestoaddmeaningtotheirl ives. 11/25/20139:14AM

202 individualizedhousingthatisnotl ikeadultfostercare,butrathergivingthepersontheabil i tytol iveonhisownwiththesupportsnecessarytodoso,evenifi tiswithfull-timeassistance.

11/25/20136:59AM

203 housingwithsupportsandtrainingaspartoftheprogram. 11/24/20137:36PM

204 Betterhousingoptionstodevelopfriends,independenceandthehomeisstableandlongterm. 11/24/20137:20PM

205 MentorstrainedinheSocialThinkingmethodologytohelpadultsunderstandexpectedbehaviorincommunitysituations

11/24/20136:57PM

206 In-homesupports.Mysonhasbeenonthewaitl istfor8years. 11/24/20132:46PM

207 RespiteProviderList,Hippotherapy,SelfDefenseTraining,IncomeLossreimbursement(forcaregivers),confl ic tcoaching(mediation)forsocialsituations

11/24/20132:01PM

208 Iwouldlovetobeabletogetthetypeofsupportsthatareavailableforadultsformysonl ikewehadinRhodeIsland.

11/24/20131:51PM


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209 Givethec lientcontrolandkeepservicesatalocallevel.Morefundingforeduvcationandtraining 11/24/20131:32PM

210 Personcenteredtransitioningplanning(childtoadult)doneattheAreaAgencylevelshouldbebetterintegratedwithVokeRehabandtheschool'sIEPtransitionplanningprocess.Thereiscurrentlynocoordinationacrosstheseareasand,asaparent,Iwaslefttryingtohavealltheseseparategroupsdevelopseparateplansthatwentinthesamedirectionwithoutaduplicationorconfl ic tinservices.Myguessisthatsomefamilieswhoaremorepassiveaboutpartic ipatinginthedeliveryofservicesmaynotseeaneedtointegratetheseplansorhavethetimeorabil i tytodoso.

11/24/20138:44AM

211 notsure 11/24/20137:17AM

212 ResidentialDentalCurrentlythefamilyhastwodentalplansouttohelpthecostofhisdental,buthavebeentoldcannottaketheweeklyfeesforthecostofthedentaloutofhisplan.Wealsohavehimlivinginourhomewithouta521paidhomelikeothersinthecommunity.Weweretoldtheareaagencyfrownsonthis.

11/23/201311:27PM

213 Ongoingtransportationfundingforthosewithcriticalhealthcareneeds(insteadofsubmittingformsconstantly);comingtoyourhomeformeetings;lesspaperworktoobtainservices

11/23/201310:33PM

214 Theabil i tytopurchaseasmartphoneandpayforthemonthlycosttherearesomanytimemgmtfunctionsthatwouldhelpmychildbemoreindependent.Payingfortheprovidersoutofpocketcostforsocialandrespitecareevents.Dentalexpensesbeingcovered.

11/23/201310:16PM

215 MobilePhlebotomy 11/23/201310:06PM

216 Iamnotmanagiingmysiblingscareyetandmykidsarenotonmedicaid.Idonotknowtheanswertothis.

11/23/20136:10PM

217 Wouldbenicetohavea"familyfriendly"websitetogotoseewhatservices,equipment,providers..etcareelidgeablethroughMedicaidandtheprices/amounts/caps.Forinstancemydaughterneedsacommunicationdevice.Wouldl iketobeabletogotothewebsite,c l ickoncommunicationdevices,seewhatqualifiesthroughMedicaidandhowmuchtheywil lpayfor.Wouldalsobegreattohavetheabil itytohavea"LiveChat"atanytime.Asasinglemomtakingcareof2childrenwithSpecialNeeds,bythetimeIhaveachancetoreseachortalktosomeoneit's8:00-10:00p.m.atnight.Nooneisavailable.

11/23/201312:21PM

218 MydentistIwantmydrstotalktoeachotherandtreatallofme.I'mmorethanacollectionofpieces. 11/23/20138:49AM

219 Dental,transportationtomedicalappointment.Thecurrenttransporationformedicalappointmentisajoke.TherearecapsaspartoftheBDS'sconsiderationsonwhatcanandcannotbepaidfor.IfyoucanfindaprivateABAtherapistthatcharges$80perhour,howeveryouareforcestouseonefromanestablishedbusinesswhocharges$120perhour,andtheendresultisthesame,whyshoudlIhavetopaymore?

11/23/20138:20AM

220 backupprovisionsforwhenyouarei l l andcannotprovidecareforyourchildorinvalid.Therearetimesyoujustcannotdoit.....evenifyouWANTto.

11/23/20138:08AM

221 BettertransportationassistancetoscreenhiredhelpPAClnapcp.Insuranceforpersonalcareproviderspoolofpersonalltousewhenpeoplecalloutsick.Paymenttofamilieswhocareforfamilymembers

11/23/20138:06AM

222 Respitecareprovidersandspecializedtutorsonthissideofthestate.Also,specialized,fieldspecificpsychologiststhatacceptMedicaid.

11/23/20138:02AM

223 Autismsupportinnashuainc ludingbehaviorist. 11/23/20136:41AM

224 Morrappropriateorganizedgroupactivitiestoreducesocialisolation,inc ludingsharedl ivingarrangements.

11/23/201312:43AM

225 Vocationalrehabforblindteen 11/22/201311:18PM

226 Chiropractic SupplementsNaturopathsandMassageTherapy 11/22/201311:11PM

227 Notsure....butwonderaboutspeechpathologyorOT/PTservicesforlongterm. 11/22/201310:48PM

228 Morerespitemonies,mentalhealthservicesthatarisewithindividualswithdisabil i tiesthatmaynothavebeenprevalentintheyoungeryears.

11/22/201310:35PM

229 Mentalhealthproviders,respiteprovidersandmentalhealthinpatientstays. 11/22/201310:30PM

230 AppliedBehavioralAnalysis(ABA) 11/22/201310:24PM

231 NonethatIcanthinkof. 11/22/20136:55PM

232 DentalFuneralservicesIfsyndromeisrareaddtheabil i tytoconnectwithconferences/groupsforraresyndromesupport

11/22/20136:31PM


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233 Wellfundedsystemthatcanhirequalifiedpeople. 11/22/20135:52PM

234 Thehomeandvehic lemodificationamountsavailablearecompletelyunrealistic intermsoftheirmaximums.

11/22/20135:34PM

235 Neuro-ResourceFacil i tation 11/22/20135:30PM

236 Clientsshouldbeallowedtoremainintheirhomesandreceiveadequateamountsofcarewithoutthestatetryingconstantlytoplacetheminanursinghome.

11/22/20135:25PM

237 Awil l ingnesstoprovideusefulappliancesandDMEratherthanjustlookingatal istandsaying"no". 11/22/20134:28PM

238 -Dentalcare-Avastlyimprovedmentalhealthprovidersystem,withlessstaffturnover.Dedicated,qualifiedprovidersdon'tstaywiththecommunitymentalhealthsystemverylong,hinderingprogressthatmightbemade

11/22/20134:17PM

239 moretransportation,RNtrainingforindividual'sbloodsugartesting,moreemploymentprogramsandvocationaleducationwithtuitionpaid,moreindependentl ivinghelp

11/22/20133:56PM

240 Idonotknow. 11/22/20133:56PM

241 Adequatebudgetsforpeoplewithintenseneeds. 11/22/20133:53PM

242 unknown 11/22/20133:46PM

243 dental,mentalhealthservices.vision 11/22/20133:23PM

244 dental,mentalhealthservices,vision 11/22/20133:22PM

245 Dentalcoverage,longtermspeechandphysicaltherapy 11/22/20133:20PM

246 LNAservicetobeprovidedoutsideofhome. 11/22/20133:18PM

247 opportunitytohavephysicaltherapyonoccasion 11/22/20133:09PM

248 Alargerbudgetallowancefortherapiesthatarebenefic ial. 11/22/20133:05PM

249 Respiteusedtohelpoffsetafterschoolprograms.Apoolofrespitepeopletochoosefrom.Teengroupswithsimilarissues.Teenactivitiesincommunitywithkidsofsimilarissues

11/22/20133:03PM

250 Behavioralandspeechtherapy 11/22/20132:54PM

251 DentalpreventionforAdults,MentalHealthandsubstanceabusesupports,ConsolidatedbudgetsforallpopulationsasintheDDsystem.Theabil i tytopayforthings--notjust'staff'

11/22/20132:51PM

252 Increasedfundingforcostofl ivingraisesandtopayal ivingwagetosupportpersonal. 11/22/20132:47PM

253 Homecareprovidermoney 11/22/20132:18PM

254 youneedtoendthewaitl ist,youneedtohaveprovidersheldaccountablefiscallyforthelackofservicesandbadservicestheyprovide

11/22/20132:03PM

255 Asataxpayer,Ineedabreak.Thereneedstobemoreoversightandlookingforsomelowercostalternatives.Thereshouldnotbeaneverendingpocket.

11/22/20132:01PM

256 Getridofthewaitl ist.Addrespitecaretooutreachc lients.Improvementalhealthfunding.ImprovefundingforDDc lients.

11/22/20131:57PM

257 AppliedBehavioranalysis.ABA 11/22/20131:56PM

258 DENTAL-Otherthanextractions.Havingataxia,Ican'handledentureswithoutbreakingthem. 11/22/20131:48PM

259 vocationalandpre-vocationalservicesforyouthintransitionaresopoorlyprovidedbyVRandbyschooldistric tsthatthereshouldbeanalternativefromMedicaid.Withsupportforafewyears,Ibelievemysoncouldbeemployed,drasticallyreducinghisl i fetimecostto"thesystem."Coachingservicesforanadultwithautism,whoneedsassistancedecodingworksituations.(Thisisdifferentfromtraditionaljobcoaching.

11/22/20131:43PM

260 Dental 11/22/20131:37PM

261 Staffforbackup.......maybeagencieswithbackupstaff. 11/22/20131:25PM


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262 Coverageofitemsneededtocontinueimprovingtheperson'sabil i tytoprogress.Forexample,someyoungadultsneedassistanceinl ivingahealthyl ifestyle,inc ludingexerc ise.Takinghikesandothertypesofphysicalactivitywouldbeofbenefit.Themorephysicallyfitandhealthyapersonis,theactuallongtermcostsinmedicalcarearedecreased.Begintoaddservicesearlierinayoungperson'slife,l ikewhilesti l l inschoolsothatallpartnersinthecontinuingcareofapersonknowthegoalsandcanbegintoworkearlieronthem.Payal ivingwagetocareprovidersastheyaretheonesthatmustprovidetheoneononeservicestotheperson.Theyareunderpaidnow.Remembertheoldsayingyougetwhatyoupayfor.Thisistruewithstaffaswell.Therearesomeverydedicatedpeopledoingthisdifficultjobandshouldbecompensatedappropriatelyforit.

11/22/201312:31PM

263 APCAvs.LNAthatcouldprovidetransportationaswellasadministermedications. 11/22/201312:29PM

264 housingoptionsforthosewhoarebothdevelopmentallydisabledandmentallyi l l . 11/22/201312:25PM

265 Notsurewhatisavailablenow. 11/22/201312:10PM

266 InhomeLNAsevices 11/22/201311:47AM

267 Aservicedogandthecabinetwithlocksonit.AlsoiPadsforverbalkidswithAutism.Itisextremelyhelpfulforcommunicationevenwhenyourchildisverbalandisalsonecessaryforwriting,behaviormodeling,andmuchmuchmore.

11/22/201311:44AM

268 Fundsforextrasortravel&staffingfundstobeabletodotheextrasthatwe'reabletoprovide. 11/22/201311:39AM

269 Morestaffandrespitehours.Moremoneyforcommunicationservices 11/22/201311:39AM

270 Ahotl ine(phoneoremail)thatcouldgivespecific answerstoquestionsaboutfi l l ingoutMedicaid/Medicare/SSAprogramrequirementsandforms.TherecentchangeovertoMedicarewasconfusingandtime-consuming.

11/22/201311:32AM

271 Theabil i tytouti l izefundsformorestaffrecruitmentandretainmentiniatives. 11/22/201311:30AM

272 PsychiatryRxMgt 11/22/201311:25AM

273 RobinHil lprovidesneededcare. 11/22/201311:10AM

274 Moregroupfac il i tiesforthosewithdisabil i ties-requiringsomebutnotalltotalcareservices...andmoretransportationservicesforpeoplewhoneedthem

11/22/201311:04AM

275 Moresocialactivitiesandsupportsinthecommunity.Increasedunitsincertainservicessuchasaugmentativecommunication,physicaltherapy,computerskil lsbeyondthethebasics.

11/22/201310:56AM

276 TransportationforNONmedical.thefactthatheisanadultnow.Whocannotdriveandwanttogoseehismother.Ialwayshearthatyouwantthemtohaveanormall i fe.whyisn'tthereanytransportationforthemtogoouttodothings???????

11/22/201310:46AM

277 Weliveinaruralareaandtransportationisalwaysaconcern.Currentlywepayanindividualfortransportationbutifhewassuddenlynotabletocontinue,itwouldbedifficultfindingareplacement.Increasedfundingwouldbegreat.

11/22/201310:37AM

278 Independentl ivingbutsupervisedforsafety 11/22/201310:36AM

279 computertraining 11/22/201310:31AM

280 Despitebeingapprovedforrespite,wewereneverabletofindaprovider.Screenedproviderswouldbegreat(toolateforusthough),whendeterminingeligibil i ty,lookatthewholefamilybudget,notjustthebasicsandusecommonsense.E.G.,someonemaking$30,000ayearand$30ingasaweekhasmoremoneyleftoverthansomeonewhomakes$50,000ayearbutcommutesatacostof$30perday!

11/22/201310:30AM

281 grouphousingforyoungadults 11/22/201310:28AM

282 Complementarytherapiesneedtobefullysupported.Also,chiropractic servicesneedtobereinstatedasamedicaltherapyaswell.

11/22/201310:04AM

283 Respitehomes 11/22/201310:03AM

284 RespiteservicesthatdoNOTinc ludeplac ingmywardintoanursinghome. 11/22/20139:53AM

285 Somealternativetherapiesl ikemusictherapy,aquatherapy,andhippotherapy. 11/22/20139:50AM

286 Adultdentalbenefit,ABAforautism,morequalitymentalhealthservicesinc ludingcounseling 11/22/20139:42AM


126/155

Q30Howwillingwouldyouoryourfamilymemberbetodosomethingtoaddasmallrewardoffundstoyourannualservicesaccount--likeparticipatinginahealth

screeningorfitnessprogramorvolunteerwork--ifitweresomethingthatitwas

withinyour(their)abilitytodo?Answered:507 Skipped:385

8.68%44

38.07%193

53.25%270

507

2.45


1 Volunteerworkisalreadybeingdoneandisveryimportanttotheindividualvolunteering. 12/9/20137:54PM

2 Thiswouldalldependonwhatitisspecificallyandhowtimeconsumingitwouldbe.Somethingsjustcan'tbecountedonespeciallyifourindividualissick,theweatherisbad,thetimeoftheyearitis,orifwehavealternatecareforourindividualetc.

12/8/20138:33PM

3 Idoitallthetimevolunteertakethepenguinplunge.maybethestateworkerswhogetanawfullotofsickandvacationtimeshouldconsidergivingsomeuptohelpothersinneed

12/8/20137:42PM

4 Wedoenoughalreadytoprovideforourmember24/7for32years. 12/7/20136:17PM

5 GreatIdea!Benefic ialandcreatesownershipandasenseofworthformychild 12/7/201312:03PM

6 Imightbeabletogettimetodothis.Theotherguardianworksfull-timeandhasafamilysowouldbelessl ikelytobeabletodothis.Mysister(c lient)withDownsSyndromeanddementiaisincreasinglylessableto.

12/7/201311:00AM

7 Thisquestionistoopoorlywordedformetoattempttoanswer. 12/6/201311:29PM

8 Whatdoesthatmean,smallrewardoffunds? 12/6/20136:17PM

9 Gregdoesalloftheabove 12/6/20133:36PM

10 Iamthesoulcaregiverinmyfamily.Thequestionistime.Rightnowitis24/7 12/6/20132:59PM

11 Soundsl ikeamarvelousidea! 12/6/20131:43PM

12 Definitelywouldifvolunteerwork.Ihavenofundstohelpfinanically. 12/6/201312:40PM

(nolabel)

0 1 2 3

Wouldnot Might Would Total AverageRating

(nolabel)


127/155

13 HelikesmonetaryrewardsandIpayhimoftenfordoingthingsbyhavinghimputthemoneyonapaysheetinourkitchencupboard.Hecanthenusethatmoneytobuywhathewants,l ikevideogamesorgiftsforbirthdaysorChristmas.Somethingl ikeapointsaccount.Wenhewantssomething,Ipayforit,andhetakesthemoneyoffhispaysheet.

12/6/201310:10AM

14 Itmustalsobec learthatIamTRYINGTOLIVEaREGULARHEALTHYLIFE,andaccesstothisshouldnotbedeprivedtome,evenifIampartofarewardsprogram..ahealthyl ifeinc ludesavarietyofpeople&activities&focuses,notjustONE..

12/6/20139:59AM

15 Goodidea 12/6/20139:25AM

16 notapplicabletoproviders 12/6/20139:03AM

17 Ithinkthisisaverygoodidea. 12/6/20138:22AM

18 Happily! 12/6/20137:52AM

19 Shouldn'tneedto"jumpthroughmorehoops"foradditionalfunds.Somehow"specialrewards"don'tseemfair.Wearenotdogslookingforanextrabiscuit.We'rehumanbeingsinneedofcare!Fundsshouldbeevenlydispersed.Thankyou.

12/6/201312:52AM

20 Ivolunteernow 12/5/201311:01PM

21 Iabsolutelywouldhelp.Weallneedtosupporteachothertomoveforward.Itbenefitseveryone. 12/5/20138:43PM

22 Partic ipatingisveryimportant. 12/5/20136:51PM

23 Preventioncountsbutpartic ipationshouldnotbetiedtogettingotherservices 12/5/20136:35PM

24 I'mnotsurewhatthismeans.Oursonalreadytriestopartic ipateinafitnessprogramthathasprovenessentiallyuselessinmotivatinghim.AndIvolunteeralotwitheffortstoassistthosewithdisabil i ties.I'mexhausted.Idon'tthinkIhaveitinmetodomore.Caringforsomeonewithdisabil i tiesisahugetaskinandofitself.

12/5/20136:26PM

25 Moneyshouldnotbetiedtospecific programs.Mysonreceivesregularmedical,vision,anddentalcare.Wealreadymakesureheexerc isesregularly.Weworkveryhardcaringforoursonandfindaquestionl ikethisoneinsulting.

12/5/20136:23PM

26 IbelievemostfolksontheABDwaiveralreadydothesethingsthroughtheirfamilysupportsorserviceproviders.

12/5/201312:13PM

27 AsIamnear70andsti l l working,IdonotthinkIamgoingtobeoverloadedwithextratimeandenergymyself.Mydaughterhastriedvolunteerwork,butitishardtofindsuchthathasappropriatebathroomfacil i tiesandactualneededwork.Someofthevolunteerjobsshehashadweremovingpapersfromheretothereanddoingthesameeachtime.Sheismuchtosmartforthistypeofwork.

12/5/201311:31AM

28 myfamilymemberisprofoundlydisabledsoitwouldgreatlydependontheactivity. 12/4/201310:30PM

29 Ithinkbelongingisaveryimportantpartinallofourl ives,soc lubsandvolunteerareahealthlythingtodo.

12/4/20139:37PM

30 Moneyisagreatincentive! 12/4/20138:09PM

31 excellentideaandwouldlovetopartic ipate! 12/4/201312:56PM

32 I'massumingthismeanstherecipientoffunds,andmybrother-in-law(recipient)wouldnotbeappropriatefortheseprograms.

12/4/201312:30PM

33 Myfamilysuffersfromhighanxiety.Neverworkedorlearntodrive.Forheritwouldbeverydifficulttodothis,however,withbabystepsandlotsofsupportshemaysucceedindoingsomething.IhavemetwithoverahundredresidentsandIwouldsayatleast25%wouldlovetohavesometypeofvolunteerjob,especiallyifi tmeantmoremoneytogotothecostoftheircareservices.

12/4/201312:02PM

34 Greatidea! 12/4/201311:52AM

35 Iftherewouldbetransportationprovidedforourdaughtershecouldpartic ipateinthis.MyhusbandandIareolderanddonotdrivethatmuchanymore.

12/4/201310:15AM

36 Workfulltimeandwattobeamomnotsuperwoman 12/4/201310:05AM

37 AllthreeofthoseitemsarealreadypartofourCDSplan. 12/4/201310:04AM

38 doesnotwork 12/3/20135:30PM

39 Notsurethisappliesinmycase. 12/3/20132:17PM

40 Nostringsshouldbeattached. 12/3/20131:28PM


128/155

41 Gladtohelpevenifnotforareward.Thebenefitisalreadyl ikeareward.Itisverymuchappreciated. 12/3/201312:56PM

42 Idoitnow.IworkwiththeParentPartnershipinConcord.IgotoCommunityCrossroadsmeetingsasmuchaspossible.Duetoagesomethingswouldbeverydifficult.

12/3/201312:16PM

43 Ineffectiveandprejudiceduseofthis(oftenmoneyrewarded)personalinformation. 12/3/201311:49AM

44 Mychildrenpartic ipate/involvedinsomanymeetings,therapies,etc.thattheyneedtimetobekidstoo.Iwouldnotwantthemtohavetopartic ipateinanymorerequiredattendancetypeitems/work.

12/3/20139:18AM

45 Iwouldjoinahealthc lubaslongastheyagreedtopayforit. 12/2/20136:05PM

46 Myfamilymembercurrentlypartic ipatesinahealthyl ivingprogramrunbytheGreaterNashuaMentalhealthcenter.

12/2/20134:47PM

47 IwouldbehappytodowhateverIcouldtohelpmysonandanyoneelse. 12/2/20133:07PM

48 Ifeelthatmostpeoplewouldpartic ipateinthis 12/2/20132:03PM

49 YEs,butwhatdoeshealthscreeningorfitnessthathavetodowithlongtermsupport?Icanseetheexamplebeingsuitablefortheacutesideofcare;Therearealreadyhour-for-hourvolunteerprogramsthatarehandledoff-medicaidbooksand,otherthanfundingthecoordinationpersonforthat,medicaidshouldstayoutofit.

12/2/201312:56PM

50 Wearefullyinvolvedinafitnessprogramandvolunteerweekly. 11/29/20136:21PM

51 Wearel imitedinwhatwecanphysicallydotovolunteer,althoughwewouldl iketofindagoodvolunteerfit.

11/29/20131:41PM

52 Sincemydaughterhasnotbeenabletofindsuitableemployment,volunteerworkisespeciallyimportant,especiallyifi taddedsomefundsorbenefitstoherannualaccount.

11/29/201311:54AM

53 Wealreadyvolunteerandgotothehealthc lub...can'timaginewhatelsethiswouldbring. 11/27/20136:16PM

54 N/A 11/27/201311:23AM

55 Iamalreadyanactivevolunteerinmycommunity. 11/27/20138:50AM

56 Wehaveexplainedtooursonsthatgivingbacktothecommunityandhelpingothersinanycapacityisveryimportanttothemselvesandthosetheyhelp.

11/26/201312:09PM

57 Mydaughteralreadydoesallthesethings.Shevolunteersinadaycarekindergartenc lass,takesamodifiedkaratec lassandisalwaysup-to-dateonallherhealthscreenings.

11/26/201311:43AM

58 IcurrentlydovolunteerworkthroughABLEandwouldlovetobeabletodomore.Ienjoyhelpingotherpeople,becauseIknowhowitfeelstohavetofinallyadmitthatIneededhelpandthenegativefeelingsthatIlearnedtoendure.Thepriceoflosingyourpride.ThatiswhyIthinkeveryoneshouldtryit,i ftheycan!

11/25/20139:24PM

59 can'tansweronthispageeithercan'tc l ickontheanswerIwant 11/25/20138:27PM

60 Againmoreworkforthemwhentheywouldpreferlessresponsibil i ty. 11/25/201311:23AM

61 MysonisyoungbutIbelieveinvolunteerism.Itshouldbeareward/additionfordoingtheworkandnotnecessarilyarequirement.

11/25/201311:18AM

62 Ibelievethese'screenings'areaninvasionofprivacy.Wedol iveaveryhealthyl ife-styleandareahealthyfamily,butIbelievethese'screenings'areaseriousinvasioninmypersonalandprivatel ife.

11/25/201310:12AM

63 dependsonwhatyouareaskingformysistertodo 11/25/201310:10AM

64 medicallyfragil 11/24/20137:29PM

65 Notime 11/24/20135:26PM

66 Weoftendothesethingsanyway,itwouldbegreattoberecognizedforit 11/24/20132:02PM

67 Idothisallthetimewithmypeoplewhoknowme 11/23/20138:49AM

68 Mostdefinately! 11/23/20138:21AM

69 Feelthisquestionisinappropriate.Discriminates,unfair,andshouldnotbepartofthissurvey. 11/23/20137:47AM

70 Wedo 11/22/20136:31PM

71 Mydaughteriscompletelydisabled.Shecan'tdoanythingl ikethis. 11/22/20135:34PM

72 Wouldnotapplytomyson'ssituation 11/22/20135:26PM


129/155

73 Needtothinklongandhardfirst. 11/22/20134:29PM

74 notreallyrelevant;mysonwouldnotl ikelypartic ipate 11/22/20133:54PM

75 Wouldverymuchwelcomeafitnessprogram 11/22/20133:21PM

76 volunteer 11/22/20132:55PM

77 Whatiftheyalreadydothesethings--whatwouldbetheincentiveforthem...seemslikerewardsaretocorrectbad(sorrynotthebestwordbutallthatcomestomindthismoment)andnotthegoodthingsfolksalreadydo.

11/22/20132:53PM

78 Ihaveservedonboards,councilsgivenfreeadviseoverthepast30years.DuringthattimeIgaveupacareer($30,000peryr.x30yrs.=$900,000notinc ludingraises,benefits,etc.)income,friends,familyfreetime.NotthatIwouldn'tdoanythingformysonsti l l ,butIdon'tbelieveitisfullyrealizedwhatwesacrificetocareforourchildrenthroughnofaultofourown.Westi l l supportmanyofhisneedstogivehimthequalityofl i fethathedeserves.Iwouldgetinvolvedifi tactuallywasproductiveandpositiveoutcomes.

11/22/20132:48PM

79 Youhaverushedintoaplanthatyouhavenoideahowitwil l impactfamilies.Youareusingfamiliesascheaplabor.ManyfamiliesuseCDSasmeanstoprovideneedmoneytothehouseholds.However,thisimpactsmyfamilybynotallowingahighlytrainedpersontoworkoutsideofthehome.

11/22/20132:08PM

80 WOULD 11/22/20131:50PM

81 Wehaveindividualsinoursystemthatarehomebound..withoutvisitors.Volunteeringtodohomevisitsisawonderfulwaytogiveback.

11/22/201311:50AM

82 Itdepends.Iambringingmysontotherapy2timesaweekoutsideofschoolandIalreadydoaTONofvolunteerworkinthedisabil ityworld.IwouldlovetobecompensatedfortheworkIalreadydobyfacil i tatingasupportgroup-soontobetwosupportgroupsandeverythingelseIdo!

11/22/201311:47AM

83 Alldependsonthetimecommitment,spreadratherthin3/4oftheyear! 11/22/201311:40AM

84 Ourdaughterisverydedicatedtopersonalfitness.Learningmoreaboutdifferentwaystostayhealthyandfitwouldbeveryeffectiveforher.

11/22/201311:34AM

85 Wecurrentlyadvocatefordoingthesethingsandourfamilymemberreceivesongoingmedicalattentionandalsoweaskhimtovolunteerwhereappropriate.Also,aphysicalfitnesscomponenthasalwaysbeenpartofhisindividualserviceplan.

11/22/201311:32AM

86 Evendiscountedratesofthelocalhealthc lubfac il i tiesareoutofourbudgetbutIwouldgladlypayfortheseservicesifmoreaffordableandhewouldhealthieraswell

11/22/201311:06AM

87 WhoisgoingtotakethemtotheGYM?Iwouldl iketoseethemgetsomepayiftheydovolunteerworknotalot.Theyknowthattheyareworkingandtheyknowthatpeoplegetpaidtodoajob.

11/22/201310:48AM

88 Notsurebecausehedreamsofmanythingshereallycan'tdo,andbeinglazyandstubbornasheis,the3thingsabovewouldwareoffrightawayandhewouldwantsomethingelse.

11/22/201310:39AM

89 volunteerwork,notinterestedinhealthscreeningorfitnessprogrambecauseofconfidentiality 11/22/201310:31AM


130/155

Q31Whatactivitiesthatwouldincreaseyourhealthorqualityoflife(oryourfamily

member's)shouldbeconsideredforrewardstoaddfundstoyourannualservicesaccountifyouhadone?


# Responses Date

1 Additionalrecreationalopportunities. 12/9/20137:54PM

2 Healthc lubmembershiptoincreaseexerc ise. 12/9/20136:44PM

3 somethingphysical 12/9/201312:41PM

4 Ihavenoidea.Relievingstresswouldbenicebutnotsurehowthatcouldcomeabout. 12/8/20138:34PM

5 whydoweneedrewards???whynotdoitbecausetheydeserveit? 12/8/20137:43PM

6 Notsure 12/8/20137:19PM

7 Nutritioneducationtoinc ludecookingc lasses.Hiking/walkingevents.Gymmembershipswithtrainerguidance.

12/8/20134:33PM

8 Exerc isingandeatinghealthy,,,quittingsmoking 12/8/20139:56AM

9 Beingabletoleavethefac il i tywithsupportstaffoccasionallyonweekends. 12/7/20134:31PM

10 dietandnutritionbudgeting/moneymanagementexerc iseopportunityforservicetoothers 12/7/201312:04PM

11 volunteeringhealthcheckupsvisitstootherssimilarlysituated(ifpossible)attendanceateducationalseminars/activitiestoremainupdatedaboutprogram

12/7/20138:32AM

12 weightwatchers,gym,volunteerwork,partic ipatinginmycare 12/6/201311:25PM

13 Volunteerwork 12/6/201310:28PM

14 Physicalactivities(l ikeYMCAmembership) 12/6/20139:52PM

15 EducationandPhysicalActivity 12/6/20136:05PM

16 Exerc ise.Learningmedicationmanagement. 12/6/20135:40PM

17 AdherencetoIEP,effortstoimprovefitness,wouldbepositivereinforcements. 12/6/20134:44PM

18 volunteeringinthecommunityinastructuredsetting 12/6/20134:43PM

19 Iamnotsureatthistime 12/6/20134:03PM

20 fitness;appropriatesocialinteractionswithothers:mentalhealthdiagnosisoftenhasstigmasattached 12/6/20133:48PM

21 lightexerc ise&semisocialengagementssuchasdogwalking,gardening,simplebuilding/paintingprojectswithothersinprogram;nutritioncoursethatinc ludeshelpfulshopping&foodpreptips/recipes;encouragementtopartic ipateinthecommunity,andfeelaccepted&valuedi.e.readingtoyoungorelderly,assistingatsoupkitchen,tendingsharedgardenplot...andhelpwithfac il i tationof/transportationtotheseactivities

12/6/20133:38PM

22 Moresocializationandinteractionformymom.Iwouldl ikemorediscussionwithothercaregivers.I'mnewatthislevelofcareformymom.

12/6/20133:07PM

23 Formyfamilymember:Exerc ise,adequatesleep,healthyfoods,AApartic ipation,meetinggoalsorcommitments.Forfamilymembers:Al-anonpartic ipation,Family-to-FamilytrainingthroughNAMI.

12/6/20132:51PM

24 notsurehowitworks 12/6/20132:40PM

25 membershipathealthfitnessc lubs 12/6/20131:51PM

26 seeingaprofessional!! 12/6/20131:31PM

27 Therapy 12/6/20131:19PM


131/155

28 Arrangevolunteeractivitiesthementallyi l l personightwanttodo:Haveplacewheretasksarebroughtin.Personshowsup(getsrefreshment)andhelpsforanhourortwo-stickinglabelsonforpublicservicemail ing,countingoutsomethings,assemblingpacketsforaprogramornonprofitoprganization)andthel ike.

12/6/201312:44PM

29 TheactivitiesprovidedbyGranitePathways(ManchesterNH)andotherpeersupportgroupsaretremendouslyvaluabletomentallyi l l individuals.Fundingisneededtomaketheseprogramspossibleandtosupporttheiractivitiesandstaffing.

12/6/201311:50AM

30 Comprehensivecareforpatientswithco-occurringmentali l lness/substanceabuse.Forexample,supporttoencourageregularpartic ipationinAA,counseling,medicationmanagement.

12/6/201311:47AM

31 Homebasedmentalhealthsupportsforolderadults;Transportation 12/6/201311:40AM

32 Physicalactivities,findingprogramservicesthatarecomparabletotheindividualsneedsatalowercost.(ie.theYMCAcomparedtoahealthc lub)

12/6/201311:32AM

33 volunteeractivitiespartic ipatinginlongtermmentalhealthstudies 12/6/201311:32AM

34 Dailyexerc ise. 12/6/201311:26AM

35 healthassessments,gymmemberships,healthybehaviors 12/6/201311:03AM

36 Forourchildtohavesomekindofoccupation,eitherpaidorvolunteer.IamveryinterestedinIPSandtheservicestheyprovide.

12/6/201310:50AM

37 Volunteerworkwouldbenice.Thereisnowherefor,himtovolunteerthatIknowof...Hewouldneedtobebroughttherewithsomeoneandtheywouldhavetovolunteertogetheratleastatfirst.Afterthathewouldneedtransportation.Exerc ise.Takingac lass.

12/6/201310:13AM

38 respit 12/6/201310:09AM

39 MoreMoneyrewards,accesstoentertainment,l ikemovies,localshowsthatcostmoney,free&bettertransportation,membershipsinhealthyorganizationswithadmissionswithslidingscalesforlowincomepeople...thereshouldbeNOEMPTYSEATSANYWHEREANYTIME..thereareplentyoflowincomepeoplewho'dpayPLANadollarratherthanleavethat$15seatempty..andaworkingwordisPLAN..ifwedon't&cannotknowourbudgets,weCANNOTPLAN,LIKEANYOTHERPERSONtobepartofanevent..andsometimeseventsinthiseconomy,youonlyhearabout,lessthanaweekbefore...howcanapersononaMONTHLYbudgetplanforTHAT??

12/6/201310:04AM

40 Playtherapy. 12/6/20139:57AM

41 partic ipationinheatlheducation,fitness,andrecreationalactivities 12/6/20139:42AM

42 ?? 12/6/20139:41AM

43 Gymorcooking 12/6/20139:37AM

44 Volunteerworkattendingeducationalprogramsexcerc iseprograms 12/6/20139:36AM

45 Exerc ise 12/6/20139:18AM

46 Notapplicabletoproviders 12/6/20139:04AM

47 poolmemberships,outings(moviesorparks) 12/6/20138:44AM

48 Gymoractivitel i festylerewards,rewardsofstayingoutofhospitalorhavingregularhealthappointments.

12/6/20138:10AM

49 exerc ise 12/6/20136:53AM

50 AnnualPhysical,attendingpeersupportprograms,partic ipationinareleventeducationprogram 12/6/20136:17AM

51 agymmembership 12/6/201312:37AM

52 Exerc iseandnutritionprograms 12/5/201311:54PM

53 housing,food,uti l i ties,cable,internet,phone,transportation,medications,medicalcare,longtermhospitalizationformentaldisorders.

12/5/201311:28PM

54 Smokingcessation 12/5/201311:09PM

55 Helpinpayingformembershipinourcommunitycenterforswimmingandawalkingtracked 12/5/201311:03PM

56 Ipartic ipateintheINSHAPEprogramandexerc isefourtimesaweekattheYMCA.Thisisimprovingmymentalhealthaswellasmyphysicalhealth-Iampreventingdiabetesthroughexerc iseandachangeindiet..Itwouldbegreattohavethisaddfundstomyservices.

12/5/201310:51PM


132/155

57 Exerc iseandnutrition 12/5/201310:50PM

58 Activitiesandhelpwithdailyl iving 12/5/201310:29PM

59 Adaptivesports 12/5/201310:27PM

60 Exerc ising,communityservice 12/5/201310:16PM

61 Exerc ise 12/5/201310:14PM

62 Volunteertospeaktomentalhealthprovidersonwhat'simportanttothementallyi l l .. 12/5/20139:56PM

63 Weightloss.Exerc ise/fitnessactivities. 12/5/20139:55PM

64 Exerc isenutritionpreventivecarefinancialforcompletingtheseactivites 12/5/20139:51PM

65 nutritioninfo,fitness/socialactivities,jobskil ls 12/5/20139:46PM

66 Gym/Yogamembership,GranitePathways/Clubhousemembership,Healthyeatingprograms. 12/5/20139:26PM

67 BecomeamembertotheYMCAforexerc ise. 12/5/20139:08PM

68 Educationfunding.,Helpgettingfundingfortransportation,suchasacar.Financialassistanceforgymmembershipsand/orotherwellnessactivities.Believeitornot,butIbelievecertificatesforreducedmealsatrestaurants,movietheaters,bowlingalleys,sportingevents,etc.wouldbephenomenal.Peoplewithamentali l lnessoftenfeelself-consciousandlackconfidence.Socialanxietyisatremendousissue.Havingtheopportunity(andreducedfinancialconcern)toexperienceactivities,thatmostpeopletakeforgranted,couldcontributetoimprovedmentalhealth.Thesocializationaspectissoimportantinrecoveryandstabil ization.,

12/5/20138:50PM

69 Goingtothemovies,outdooractivitiesl ikewalkingorgoingtothebeach,grabbingsomethingtoeat,newboardgameweallcouldplay...

12/5/20138:41PM

70 havingasupportgroup 12/5/20138:36PM

71 Membertoagym 12/5/20137:50PM

72 Fitnessprograms,volunteerprograms 12/5/20137:47PM

73 socialoutings 12/5/20137:14PM

74 supportgroupforfamilymemberssupportgroupforpatientswithsimilarissuesorneedsactiveinvolvementinpatient'scare--treatmentplanning.

12/5/20137:10PM

75 Supportedemployment. 12/5/20136:52PM

76 physicalfitness,nutritionanddietandtransportationsubsidy 12/5/20136:36PM

77 NonsmokerWeightlossgoalsPhysicalactivity 12/5/20136:35PM

78 Sociallybasedphysicalactivities--there'sl i ttleofsupportedsocialoptions.Theseneedtheguidanceofprofessionalsandshouldnotbelefttopeers.Theseshouldbecommunitybased,easytogetto,andappealingtoallages--particularlyyoungadults.

12/5/20136:28PM

79 Anyformofexerc iseinc ludingwalking.Anyadaptivesportactivity. 12/5/20136:27PM

80 fitnessprogram 12/5/20136:26PM

81 meaningfulemploymentorservicepossibil i ties 12/5/20136:18PM

82 Exerc ise,volunteering. 12/5/20136:02PM

83 membershiptoalocalgymwithapersonaltrainer 12/5/20135:24PM

84 Noneatthistime 12/5/20133:13PM

85 Moresocialinteractionsformysonwithsupportsotherthanmyself. 12/5/20131:54PM

86 Additionalrespiteservices.Adequatetrainingofdirectsupportproviders. 12/5/20131:30PM

87 Goingswimming.Thepoolisthebestforourfamilymemberbuttheoneinourareaistooexpensiveforustoafford.

12/5/20131:03PM

88 Fixherdisabil i ty.Whatastupidquestion. 12/5/201311:32AM

89 Exerc ise 12/5/201311:07AM

90 n/a 12/5/201311:00AM


133/155

91 Screenings,doingactivitiesinthecommunity,continuingeducation 12/5/201310:24AM

92 Adaptivetherapiesandfitnessprogram 12/5/20139:40AM

93 Physicallyinvolvingoutingsl ikehiking,snowboarding,swimmingorteamsports:basketball,volleyball,etc.Mydaughterhasbecomeobesewhileintheprogramandthereisnexttonothingforactivitiesthatmighthelpinweightmanagement.Eventually,herweightmayimpactherhealthandleadtoavoidablehealthissues.

12/5/20138:57AM

94 Goodqualifiedrespiteproviders 12/5/20138:50AM

95 Iwouldl ikeaspecialOlympicactivitiesinvolvedinourschools 12/5/20137:42AM

96 Tutoringfunds 12/5/20135:41AM

97 gymmembership 12/5/20135:31AM

98 bowling,goingoutsideforawalk,goingtotheYMCA,swimming,cooking/baking 12/4/201310:32PM

99 membershipinalocalgym. 12/4/201310:24PM

100 PhysicalTherapyforstretching 12/4/20139:48PM

101 notsure 12/4/20139:45PM

102 Snowshoeing,bowling,skiing,waterskiing,canoeing,kayaking,hiking,rockc limbing,fishing,icefishing,swimming,gardening,basketball,baseball,golf,archery,biking,walking,running,kiteflying,skating,hockey,floorhockey,tennis,pingpong.Icouldgoon!

12/4/20139:43PM

103 Visitstorehabpool(whichwenowpayforoutofpocket). 12/4/20139:25PM

104 gymmembership 12/4/20138:15PM

105 Quitsmoking,increaseexerc ise,loseweight,workorvolunteering. 12/4/20138:10PM

106 Makemydaymoremeaningfulindoingmorehandsonhandsthingswithme. 12/4/20137:16PM

107 volunteering,fitnessevaluation/programinvolvement 12/4/20136:41PM

108 yogac lassessilversneakersfreeflushots 12/4/20133:27PM

109 Swimming,orgymmembership,Musicc lassesortheraphy,MaybeaskiprogramliketheyhaveaCrotchetMountain.

12/4/20133:25PM

110 Smallincreaseinmonthlypersonalneedsallowance 12/4/20133:17PM

111 Myfamilymemberisprettysedentary,andl ikesitthatway!Wecouldprobablypartic ipateinscreeningsoroutingsthatdidn'trequiremucheffort.

12/4/20132:43PM

112 recreation 12/4/20132:11PM

113 Musictherapy,therapeutic riding,travel(Isthiswhatismeantbyreward???) 12/4/20132:00PM

114 nutrition&exerc ise 12/4/201312:57PM

115 Fitnessprograms,CommunityService 12/4/201312:15PM

116 Volunteerwork.Nomissedmedicalappointments.Iftheyareinaltc home,doingtheirownroomcleaning/bedmaking,(savesstafftimefromdoingthiswork).Afterbeingtrained,assistingotherresidentsatmealtimes.OnepersonIworkwith,hassuperbmechanicalskil ls,andcouldperhapsassistwithwheelchairadjustmentsandfixingwheelchairs.Hesetupawholel ightsystemonhiswheelchairsothatwhenhewentintotowninhiswheelchair,carswouldseehisl ightsanddirectionals.Walkingorstayingneararesidentwhotendstowanderaimlesslyandverballydirectthemtonotentersomeoneelse'sroomroleavethefac il i ty,andofcourseiftheotherresidentdidentersomeoneelse'sroomorwalkedoutofthefac il i ty,lettingastaffmemberknowimmediately.Ifthepersonl ikesdoinglaundry,havingthemassistwithlaundrytasksorkitchenduties,etc.Allofthesethingscouldraisetheself-esteemofthepersonandfreeupstafftimeforotherduties.

12/4/201312:02PM

117 Moreintensivejobdevelopmentandinitialon-sitesupport. 12/4/201311:57AM

118 payingforhisgymmembership 12/4/201311:53AM

119 Healthynutritionandweightloss,c lassesonstressreduction,sleepc lasses,exerc iseandfitness 12/4/201311:53AM

120 Notsure 12/4/201311:40AM

121 Exerc iseprogram 12/4/201311:11AM


134/155

122 1.Tieperformancetotheserviceplan2.Incentivetostaybelowbudget3.Bekeenlyawareof"costofservices"4.Createateammentalitywithotherfamiliestochoosethebestservicesavailableratherthat"trialanderror".

12/4/201310:48AM

123 volunteering 12/4/201310:32AM

124 Ireallydon'tknow. 12/4/201310:16AM

125 physicalactivitiestodowithfriends. 12/4/201310:04AM

126 Physicalfitnessactivitieseg:involvementinregularexerc iseprogramsorteamsCommunityservice/volunteering(l ibraryetc)

12/4/20139:51AM

127 Walking 12/4/20138:54AM

128 Physicalactivityandexperiencedinhomesupportprovider. 12/4/20138:49AM

129 Regularexerc iseprogramoverseenbytrainerorfitnessc luborstafftrainedtodoandoverviewforaccountabil i tyforpeopleseatinghabitsandhealthyl ifechoicesandheldaccountablefortheirhealthoutcomesandrewardedfortheirprogressorcontinuedfitnessprogram

12/4/20138:42AM

130 IthinkpeoplewhosmokeyetareonMedicaidandhavetheirrespiratorymedspaidforneedtostopsmoking.peoplewhoareoverweightneedtoloseweight...theseare2prominentissueswithmanymedicaidrec ipients.mysituationisthatmychildisdevelopmentallydisabled...bornthatway...didnotcontributetothedisabil ity.thosewithacquired(alleged)disabil i tieswhoactivelypartic ipatedintheiroutcomeshouldbeheldaccountabletosomedegree.Sadlymil l ionsofdollarsareprofoundlywastedonpeoplewhoareNOTdisabled...greedandcorruptionarerampantinthewelfaresystem.Thoseondisabil ityneedtobereviewedevery6months.....checkDMVrecordsforthekindofcar(s)theydrive,checkpersonalpossessions....72"screenTV,topofthel inecablepkg.,NorthFace,Uggboots,18kgoldjewelry,fakefingernails,Coachbags,etc.....thosewastedMedicaid/disabil i tydollarscanbeandshouldbere-directedtothoseTRULYdisabled.....

12/3/201311:25PM

131 Loweringcholesterol,bloodpressure,c lockinginaparticularamountofexerc iseperweek. 12/3/201310:32PM

132 Physicalexerc ise 12/3/201310:31PM

133 Healthyl ifestyle 12/3/20139:19PM

134 contributingtothecommunity/societyinaproductiveway 12/3/20139:02PM

135 Notsure 12/3/20138:23PM

136 providingcontroloffundsforfamiliesunabletodoso 12/3/20137:25PM

137 Dietorexerc iseprograms,stressreductionprograms 12/3/20136:41PM

138 diabetesprogram,nutritioncounseling,exerc ise,personaltrainer--healthmotivator. 12/3/20135:47PM

139 GymmembershipNutritioncounselingWeightwatcherstypeprograms 12/3/20135:19PM

140 Regularexerc iseofanykind. 12/3/20135:09PM

141 Notsure 12/3/20135:01PM

142 volunteerorjobopportunities 12/3/20134:50PM

143 Volunteeringinthecommunity-outsideofMegan'sregularserviceplan(shealreadydoessome)andmaybetrackingherexerc ise/healthyprogram

12/3/20134:39PM

144 Idonotknow. 12/3/20134:30PM

145 aprogramforweightlossandpropernutrition 12/3/20133:43PM

146 Exerc iseprogram 12/3/20133:24PM

147 NA 12/3/20132:17PM

148 Havenoidea.We'rejusttryingtotakeitonedayatatimeasl ifeisveryhardwhenyouhavesomeoneinyourfamilywithadisabil i ty.We'rethankfulforwhateversupportwecangetandwedonotwanttoabusethesystemlikesomeproclaim(republicans).Wejustwanttobeabletostaytogetherandtakecareofeachotherandbehappy.

12/3/20131:16PM

149 Involvementinsmokingcessationand/orweightlossprogram.Partic ipationinnutritioncounseling.Receivingcounselingsupporttopromoteself-awarenessoftheneedtotakeresponsibil i tyformyl ife.Partic ipationinapprovedjobtraining.

12/3/20131:13PM

150 YMCAmembershipisawesome...butwealreadyhavethat. 12/3/201312:57PM


135/155

151 Exersizeprogramcostscovered. 12/3/201312:24PM

152 fitnessprograms 12/3/201312:21PM

153 Membershiptoagoodhealthc lubwithpool.Mykidsgetweeklygrouppooltherapythattheymedicallyneed.

12/3/201312:17PM

154 Accesstoagym 12/3/201312:11PM

155 volunteering-mealsonwheels-takingfolkstoappointments-homec lean-up-etc. 12/3/201311:50AM

156 NOIDEA 12/3/201311:21AM

157 FamilyMembershiptoYMCA 12/3/201311:14AM

158 FitnessStressmanagementHealthyeatingSafety 12/3/201311:10AM

159 Communityvolunteerwork 12/3/201311:09AM

160 Idon'tknow 12/3/20139:37AM

161 Fitness,socializationactivities 12/3/20139:34AM

162 Membershiptoagym;transportationtoactivitiesofferedbyNortheastPassageorNewEnglandHandicappedSportsAssociation

12/3/20139:15AM

163 GymMembershipsYMCAisagreatprogramwithlotsofoptionshoweververy$$$ 12/3/20139:00AM

164 morephysicalactivity,mightpurchasehealthierfoodandmealssincetheyaremoreexpensive. 12/3/20138:40AM

165 notsure 12/2/201311:02PM

166 attendanceatfamilysupportmeetingsandfitnessactivities 12/2/201310:25PM

167 Exerc iseprogram 12/2/201310:09PM

168 communityinvolement! 12/2/20138:27PM

169 fishingorhiking.......... 12/2/20138:11PM

170 Havingadequatetrainedrespiteproviders 12/2/20136:29PM

171 Joinahealthc lubatyourexpense. 12/2/20136:05PM

172 Partic ipatinginaregularexerc iseprogram.Maintainingasuccessfulweightloseprogram.Partic ipationinvolunteerwork.Offercoursesinhealthl i festyleandrewardthemforsuccessfulcompletion.Findingthememploymentandsupportingthemonthejob.

12/2/20134:53PM

173 Smokingcessation 12/2/20133:42PM

174 Traveling,hiking,swimming,biking,skiing,snowshoeing,walking,running,fishing,andgardening. 12/2/20133:09PM

175 Exerc ise,volunteering,employment 12/2/20132:04PM

176 nutrition-walking 12/2/20131:59PM

177 Flexiblefunds-recreation,household,etc. 12/2/20131:07PM

178 Rewards?I'mnotsurethathasanybearingonusorevenstatebenefitonthistopic.Ifyouaretalkingaboutphysical,acutewellness,itmakessense(helpingtostopsmoking,fitness,etc.).Applyingincentivesittolongtermcareseemshalf-thoughtthrough,oftryingtothinkoflongtermfromanacutecareperspective.

12/2/201312:59PM

179 dentalservices 12/2/201312:09PM

180 Healthfitness 12/2/201311:29AM

181 Exerc iseequipmentsomeonetoexerc isewith 12/2/201310:55AM

182 Abil itytotrulydirectservicesratherthanneedtheassistanceoftheservicecoordinator. 12/2/201310:53AM

183 Fitnessprograms 12/1/20138:08AM

184 Communityinvolvement;healthscreening 11/30/20137:43PM

185 nutritionforhealthyweightmanagement 11/30/20131:35PM

186 Chiropractic 11/30/201311:14AM

187 Thestatemustputfitnessatthetopofthel istalongwithfood,andc lothing. 11/29/20136:23PM


136/155

188 Forusitwouldbelackofskinbreakdown.Healthy 11/29/20131:42PM

189 PhysicalactivityRegularvolunteeringinlocalcommunityVolunteeringfortheareaagencyAssistanceinmakingaproduct

11/29/201311:56AM

190 Communitybasedactivitiesbecausethisl i fecanbeisolating. 11/29/20138:59AM

191 volunteering 11/29/20138:02AM

192 Noidea 11/28/20138:39PM

193 regulareexerc ise,keepingahealthywieghtthroughnutritioneducation,attendingadultedc lassesforl ifeskil lsimprovement

11/28/20132:49PM

194 Goodannualphysicaloutcomes 11/28/20135:51AM

195 ServingonAreaAgencyBoardsorFamilySupportCouncils.ServingontheDD/ABDQualityCouncil,DDCouncil.BeingagraduateoftheNHLeadershipseries.Volunteeringtohelpfamilieslearnhowtomanagetheirownservices.

11/27/201311:16PM

196 fitnessbenefitswellhealthcheckups 11/27/201310:32PM

197 Localcommunitycenterforsocialinteraction...thatwouldbewonderful. 11/27/20136:18PM

198 Notapplicable 11/27/201311:31AM

199 N/A 11/27/201311:23AM

200 volunteeringworking 11/27/20138:51AM

201 exerc iseactivities 11/26/20133:12PM

202 Fitnessrelated 11/26/20132:42PM

203 Cookingc lasses-howtocookmorehealthy/c lean(e.g.moreorganic)Familyskil lsbuilding(e.g.communicationsworkshops,cognitivebasedtherapies)Familyoutdoor[physical]activities(e.g.cycling,swimming,hiking,skiing,surfing,anythingreally)

11/26/201312:43PM

204 Volunteerinnursinghomesorfoodshopping/errandsforindividualsunabletogetoutthemselves. 11/26/201312:11PM

205 poolmember 11/26/201311:57AM

206 Ourdaughterpaysforherownkaratelessonssowouldsayhelppayingthiswouldbenice. 11/26/201311:45AM

207 Aplacethatissetupforswimmingforthehandicapped 11/26/201311:13AM

208 Moredoctorswhoacceptmedicaid 11/26/201311:12AM

209 Ihavenotideaashishealthisverygoodandhisqualityofl i feisalsoquitegood.Heisamemberofalocalgym(andattends)andhehasroutinehealthcare.

11/26/201311:05AM

210 excecisecommunityserc ivesgettingthepersonwhoexperiencesinvolvedinhelpingthecommunity 11/26/201310:40AM

211 exeses 11/25/201311:14PM

212 meetingrequirementsofanindividualizedplan,possiblythingsasexerc ise,propermedicationuse,volunteering/beingsociallyinvolved.avoidingunneccessaryhospitalvisits/expenses

11/25/201310:41PM

213 AmembershiptotheCommunityCenter'saquaexerc iseprogram.Itwouldallowformoremobil ityandmoreregularexerc ise.

11/25/20139:25PM

214 swimming 11/25/20138:53PM

215 volunteerwork 11/25/20133:58PM

216 Recreationalactivities 11/25/20132:10PM

217 Myson'squalityofl i fewouldbeimproved(minewouldtoo)ifthehadal ivingsituationthatwaspermanentandfunctioningandvaluedhimasawonderfulpersonJUSTTHEWAYHEIS.ButIthinkyoumeanexerc ise.

11/25/20132:00PM

218 WALKing 11/25/20131:52PM

219 exerc ise 11/25/20131:34PM

220 Joininganexerc iseprogram,volunteering 11/25/201312:52PM

221 Partic ipatinginbenefitwalks,communityc lean-ups... 11/25/201311:19AM


137/155

222 maintainmedicalneeds,monitorhealthissues,andexerc ising 11/25/201310:11AM

223 civic involvement(fooddrive,volunteeratl ibrary,etc)swimmingforflexibil i tyandstrength 11/25/20139:58AM

224 weeklygym,sponsorsocialevents,healthincentivessuchasbewithinyourweightrange,quitsmoking.groupwalking/bicyclerides

11/25/20139:20AM

225 Communityservice. 11/25/20139:15AM

226 Individual-based,itisdependentonperson'sabil i tiesastowhatactivitiescanbeaccessed.Ifeelthiswouldneedtobecustomizedanddeterminedbasedontheperson'sneurological,grossandfinemotorphysicalandenergyabil i ty.

11/25/20138:20AM

227 swimming,danceing,gymnastics 11/25/20132:08AM

228 Exerise 11/24/20139:29PM

229 swimming,fishing 11/24/20137:36PM

230 Partic ipateinanyformofexerc ise.Advocacyprograms. 11/24/20137:23PM

231 agymbuddytoexcerc isewithmyfamilymember 11/24/20136:58PM

232 Usingahealthfac il i ty/gym/supervisedexcerc iseprogramCommunityservice 11/24/20136:17PM

233 Fitnessprogram.Regularnutritionalguidance. 11/24/20134:26PM

234 Community-basedactivities,ofcourse,thesewouldrequiresupport 11/24/20132:46PM

235 Fitnessc lassessuchasyogaorpilates,martialartsc lasses,mentalhealthcounseling,weightlossprograms

11/24/20132:03PM

236 Sportingeventsorahealth/fitnessc lub. 11/24/20131:52PM

237 unsure,education,training 11/24/20131:33PM

238 MusicTherapy 11/24/201310:12AM

239 1.Supportedvolunteeropportunities(thatmatchtheinterests/skil lsoftheconsumer,notdemeanorexploither/himasfreelabor).2.Partic ipationinphysicalfitnessactivities3.Medicalscreenings(Butgiventhattheconsumerpopulationyouaretargetingprobablyreceivesahighlevelofspecialtymedicalcare,thismaybeunnecessaryordifficulttocoordinatewiththeirexitingmedicalteam.)

11/24/20138:49AM

240 exerc ise,emotionalsupportfromothers 11/24/20137:19AM

241 lettingthefamilybeareal"selfdirected".Nowtherearemanystipulationsandcapsonthefundsthatcanbespentononeparticularitem/area.ItisNOTmeetingourneedsthatway.Everyyear,theruleschangeandourson/individualdoesnot.

11/23/201311:29PM

242 exerc ise(butrespitewouldneedtobeoffered/providedwhileexerc ising)--IamunabletomaintainthatconsistencyatagymbecauseIcannotsecurecarealwayswhilebeingawayatthegym

11/23/201310:33PM

243 Goingtoafitnessprogram.Volunteeringyourtimetocharities. 11/23/201310:18PM

244 Accesstoagym/trainer/nutritionist,accesstomoneytohelppurchasingqualityfoods 11/23/201310:07PM

245 VolunteerworkGettingoutwithfriendsforsocialactivitiesonaregularbasis 11/23/20138:10PM

246 activities/respitecare 11/23/20134:10PM

247 GymMembershipsActivitieswheregrossmotorskil lsareuti l ized(dancing,gymnastics,sportscomplexes)

11/23/201312:26PM

248 Iwouldbeinterestedinfindingoutwhattheoptionswouldbe. 11/23/201310:32AM

249 Don'tknow. 11/23/201310:13AM

250 Membershiptoswimmingfac il i ty 11/23/20139:11AM

251 Skiing,recreation,membershipinorganizationsthatprovideconferencesonmyraredisabil ityandstaffexpensestogototheirnationalconferenceswhereIcanbewithpeoplel ikeme.Thereisonly200ofusjust5inNewEngland

11/23/20138:52AM

252 Changingcapsfornontraditionaltherapies,l ikecranial,reiki,massage,currentcapis$1,200,howeversomeofthesethingshelppeoplel ikemysonwhosufferfromanxiety.

11/23/20138:23AM

253 herbeingabletohelpwithsomeonewhocannotdothingsforthemselves 11/23/20138:10AM


138/155

254 Personaltransportationfunding.Paymentforpersonalcareprovider.Goodrespitcaretopersonallygettogymandtakevacationanddatenightwithspouse

11/23/20138:09AM

255 noc lue 11/23/20138:03AM

256 Moreforfamilies.Alotofservicesl ikerespiteexcludessiblingswhenyouneedasittertogotomeetings.Makesitmoretoughforplanning.

11/23/20136:43AM

257 fitnessactivities(notjustafitnessassessment,butactualactivity)mightmakesense.Healreadyhasinnumerablehealthassessments/treatments/appointments,soanother"healthassessment"wouldjustbeabotherwithnorealvalue.

11/23/201312:49AM

258 Notsurewhatthisisgettingat. 11/23/201312:45AM

259 Fitnesscommitment 11/22/201311:19PM

260 ProviderespiteforanotherfamilyVolunteertodriveafamilytoanappointment 11/22/201311:13PM

261 Healthc lubmembershipreimbursementmaybeone.Can'tthinkofanythingelseatthemomentbutIamsurethereareotherthingsthatwouldcometomindalso.

11/22/201310:50PM

262 swimming,walking,gymmemberships,etc 11/22/201310:36PM

263 anyformofexerc ise;workingwithadietic ianoneatinghealthy;preventivecaremedicalappointments

11/22/20136:59PM

264 swimminginaheatedpoolmassage 11/22/20136:38PM

265 Weareactiveinhealthcare,physicalactivity,community,local,stateandnationalsupportgroups.Itwouldbenicetogetarewardorbonustocovertheseexpenses.Wealsoattendeducationalseminarsrelatedtohisdisabil i tyandweeducateothersinthecommunityaboutdisabil i ty.

11/22/20136:36PM

266 Volunteerwork 11/22/20136:02PM

267 Healthscreening 11/22/20135:53PM

268 Respitecareforthefamilythatwouldallowthecaregiverssomealonetime 11/22/20135:27PM

269 Don'tknow.RightnowIthinkthemorewedotohelpthestatethemoretheywouldwantmetodo.Soundsl ikeabribe.

11/22/20134:31PM

270 joiningthelocalYMCA 11/22/20134:24PM

271 -Partic ipationinanexerc iseprogram-Visitstoadentisttomaintain/improveoralhygiene-Partic ipationinanutritionprogram

11/22/20134:23PM

272 nutritiontrainingforspecialdiets.....findthequestionhazy. 11/22/20134:00PM

273 Aregularswimmingprogram. 11/22/20133:58PM

274 Smokingreduction 11/22/20133:54PM

275 ? 11/22/20133:54PM

276 agymattendednowforindwithdisabil i ties 11/22/20133:47PM

277 healthc lubmembership 11/22/20133:25PM

278 partic ipationinafitnessprogrampartic ipationinanutritionprogram 11/22/20133:23PM

279 beingabletobeoutofthehomeandinvolvedinthecommunity! 11/22/20133:19PM

280 moreopportunitiestoattendmusicalconcerts, 11/22/20133:12PM

281 Anyprogramthatwouldhelpwithexerc iseandnutritionthathewasabletopartic ipateintakingintoaccounthisphysical,emotional,psychologicalanddevelopmentallevels.Anyhealthscreeningsthatmaybenefithim.Volunteeringwouldbeamoredifficulttasktoaccomplishbecauseofextremelylowenduranceandsocialanxiety.

11/22/20133:12PM

282 respitepool,teenprogramswithkidsofsimilarissues,respitemoniesuti l izedforafterschoolprograms 11/22/20133:05PM

283 morecommunityactivitiesformyadultdaughter 11/22/20132:56PM

284 notsureIhaveananserforthisone--requiresmorethoughtthanIhavetimeforrightnow. 11/22/20132:54PM


139/155

285 Havingbeingabletogetregulartimeofftorecharge,savemarriages,mentalandphysicalhealth,beproductivemembersofourcommunities.Support.Iwastoldmanyyearsago(beforeKatieBeckett)whenIlookedforhelpforashorttimethat"becauseweweremarried"wedidn'tqualifyforanyassistance...

11/22/20132:49PM

286 wellnessactivities&practices 11/22/20132:44PM

287 moneyforahomecareprovider 11/22/20132:18PM

288 volunteerwork,exerc ise,healthscreenings,healthyeating 11/22/20131:58PM

289 I'mnotsurewhatthismeansbutABAwouldimprovequalityofl i fe. 11/22/20131:57PM

290 fitness--thingsl ikeagymmembership. 11/22/20131:44PM

291 walkingmore,gymmembership 11/22/20131:38PM

292 VolunteeringHealthscreening 11/22/20131:26PM

293 Exerc ising(eitherataformalgymorontheirown).Incentivestofollowuponpreventativetesting. 11/22/201312:34PM

294 gymmembership 11/22/201312:30PM

295 NutritionClasses 11/22/201312:23PM

296 Gainful,competitiveemploymentinajobenjoyed 11/22/201312:12PM

297 Anythingthatwouldworkandpersonwouldbecapableofdoing. 11/22/201312:11PM

298 YMCAPasses,GymPasses,MoviePasses,Bus/StepsaverPasses,PassestoFairsandevenCertificatestoagooutforDinner.

11/22/201311:53AM

299 Providingsupporttootherfamilies.Thebestsupportsareotherfamiliesthathavewalkedthisroadbeforeus.

11/22/201311:48AM

300 goodhealthoutcomes,satisfactionandprogressongoals 11/22/201311:45AM

301 Beingabletotraveltovisitrelativesoverholidaysorfamilyevents;beingabletoaffordhippotherapy,arttherapy,abletotakehertoamusicalorplay.

11/22/201311:43AM

302 Morerecreationalsports 11/22/201311:40AM

303 Fitnessmeasurements(height/weightratio,cardiofitness)andfitnessactivities.Groupwalks,swimming,etc.

11/22/201311:36AM

304 Possiblybettercoordinationthroughourareaagencywithothergroupsthatareinneedofvolunteerism.

11/22/201311:33AM

305 GiftCards 11/22/201311:26AM

306 Healthc lubwithapoolorexerc isec lassesthatwasaffordable...Moretransportationoptions-localbusesdon'trunonweekendsorlaterintheeveningsanditl imitsoptionsandcabsareridiculouslyexpensive

11/22/201311:09AM

307 Increasingcomputerskil lsbeyondthebasics,thatistraininginspecific applicationssuchaswebordatabaserelated.Physicalfitnessprogramsinthecommunity.

11/22/201310:59AM

308 Gymmemberships,qualityrelationships/membershipsingroupsofinterest 11/22/201310:52AM

309 Ourfamilymembercurrentlyholdsavolunteerposition,afitnessprogrammembershipandhasyearlymedicalscreeningsandvisitsifneededbutvolunteerworkisgreatforanyone.

11/22/201310:41AM

310 Valuingthestay-at-homeparentwhosacrificestodotheworkasopposedtohavingtaxpayerspayforstrangerstodoonlysomeofitdespitealltheresearchsupportingthebenefitsofastay-at-homeparent

11/22/201310:33AM

311 meaningfulvolunteerwork 11/22/201310:32AM

312 partic ipationinfitnessprogram 11/22/201310:29AM

313 Recreationaccessibleforall 11/22/201310:05AM

314 Travel 11/22/20139:54AM


140/155

49.06% 260

41.51% 220

9.43% 50

Q32HowoptimisticareyouthataredesignedMedicaidlong-term-care

systemwillbeanimprovementoverthecurrentservicesystemthatyouuse?


Total 530

Notatalloptimistic

Moderatelyoptimistic

Veryoptimistic

0% 20% 40% 60% 80% 100%


Notatalloptimistic

Moderatelyoptimistic

Veryoptimistic


141/155

2.74% 15

28.52% 156

68.74% 376

Q33HowconcernedareyouabouttheState'sabilitytofundtheMedicaid

program?Answered:547 Skipped:345

Total 547

Notconcerned

Moderatelyconcerned

Veryconcerned

0% 20% 40% 60% 80% 100%


Notconcerned

Moderatelyconcerned

Veryconcerned


142/155

6.25% 35

2.32% 13

7.32% 41

2.86% 16

3.04% 17

14.46% 81

16.07% 90

7.50% 42

5.71% 32

34.46% 193

Q34Inwhichcountydoyoulive?Answered:560 Skipped:332

Total 560

Belknap

Carroll

Cheshire

Coos

Sullivan

Merrimack

Rockingham

Strafford

Grafton

Hillsborough

0% 20% 40% 60% 80% 100%


Belknap

Carroll

Cheshire

Coos

Sull ivan

Merrimack

Rockingham

Strafford

Grafton

Hillsborough


143/155

Q35Isthereanythingelseyouwishedwehadaskedoryouwouldliketotellus?


# Responses Date

1 Thesysteminplaceispartic ipatoryandallowsguardiansandindividualstherighttoagoodqualityofl i fe.

12/9/20137:56PM

2 I'vebeendoingwhatI'mdoing-caringformydisabledsonalone-sincehewastwoyearsold-he'snearing30yo.I'mgettingolderandgettingtired.Usolderparentsneedtobetakenintoconsiderationmoresothanthosewhohavechildrenunder18/21.IamthankfulthatIdol iveinaStatethathastheserviceswedoforourindividuals-it'stopstootherStates...butthere'salwaysroomforimprovement.I'malsothankfulthatIsawthissurveyintheDRCemailIreceive.Ithinkit'sreallyimportantforlawmakersetc.tohearfromfamilieswholivethisl i feeveryday-yearsonend.

12/8/20138:41PM

3 Itrulyhopethestatetakesthisseriously 12/8/20137:44PM

4 FamilieswithDDchildrenneedyourservicestostayasafamily.Putmoneywithprofessionalguidanceintothefamilypockets.TheStatewil lsavemoneyandthequalityofcareandserviceswil limprove.Toomuchstatemoneyisskimmedbeforeitreachestheintendedtarget.

12/8/20134:38PM

5 ItwouldbemosthelpfultohavesomeideaofwhatdirectionStep2isheaded. 12/7/20134:33PM

6 Thankyoufortakingthisseriouslyandsolic itinginputfromtheconsumersandtheirfamily.Makesmefeell ikethere'shopeyetfortheNHsystem!

12/7/201312:05PM

7 Iwouldl iketoseetheprogrambeveryc lientandfamilycenteredandflexible. 12/7/201311:03AM

8 Inresponsetoyourpreviousquestion,Iamveryconcernedaboutthestate'sabil i tytopayafor-profitcompanytoprovideallofthenecessaryservicestopeoplewhoneedthem.Asinflationcausesrisingpricesandrisingwagesandthefor-profitcompanycontinuestopayannualdividendstoitsstockholders,Ifeartheneedsofthepeoplewil lbeback-burnered.Ifailtoseethewisdomofinvitingprofithungrystrangersintoourl ivestoprovideintimateservicestoourlovedones.

12/6/201311:35PM

9 peopleareapttodowithoutcareiftheygottokeeppartoftheirbudget.poeple'shealthchangesandsometimesfortheworstandtheywil lrunoutofmoney.costthestatemoreintheendasmostpeoplearentabletomanageitallbythemselves.

12/6/201311:31PM

10 NHneedsmoreservicesandmorefundingandbetteroptionsforcareandservicesaltogetherthereneedstobeasystemthatworkstogethertointergrateservicesforeachpersonandcareprofessionals

12/6/201310:32PM

11 Icurrentlyuseasinglevendor,PLUSCompanytoprovidel ifeskil lsandvoc.servicesinadditiontomentalhealthcenter.Hiringprivatestafftoworkwithmychildatanotherlocationwouldbetricky.Hewouldhavenoservicesifanemployeedidn'tworkout.

12/6/20135:43PM

12 Thankyouforconductingthissurvey.MylistofthingsIwouldl iketotellyouismuchtoolongforthespaceallocated.

12/6/20134:45PM

13 ThestatesacutecareservicesneedtoberevampedinorderforLangtermcaretobeeffective.Thelongtermcareplansmustaddresstheacutephasesofthei l lnessastherewil lnotbealongtermphaseifthepersoncannotbemanagedthroughtheacutephase.

12/6/20134:05PM

14 yes,butnottimetoanswer.justrec 'dthisnoticeafewhoursagoanditisdueby5PM(now4PM).ironically,ihaveanapptwithapsychiatristconcerningmyson'sstatusPatSchumacher2HollenbeckLaneHanover,[email protected]

12/6/20133:51PM

15 Thankyouforasking.Ifyoutakesuchasurveyagain,pleasemakemoreefforttogetthewordoutandmaybedistributepapercopiesinlowincomehousingdevelopmentswheremanyofthesepatientsreside.

12/6/20133:41PM

16 takingcareoflovedwithdemitiaoralzhiemersisveryhardalone.Iisolatesyouandyourlovedoneandyoucanfallintodepressioneasily.Servicesneedtobeaddedandnottakenaway.Wedon'talwaysnowwhatweneedbutweneedhelp.

12/6/20133:13PM


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17 Pleaseholdinsurancecompaniesaccountable.Helphospitalsbyprovidingbedsforthoseinneedofcriticalmentalhealthservices.Providepreventativecare--ratherthanhospitalsturningpeopleawaybecausetheyarenotsuic idalenoughorbecausetheyaren'tgoingtohurtsomeoneelse,letsgetresourcestodivertthesepeopletothecaretheyneed.Preventativecareworkstopreventheartdisease,andtoreducesymptomsandoutcomesfordiabetes.Letssupportpreventativecareformentali l lnesstoo.

12/6/20132:55PM

18 Anthemdeniespaymenttothestatehospitalforallservicesprovided.theyuseHorribleMDreviewersascasemanagers.Theyjustdenyoutrightwithoutcarefulconsideration.ThisisthebiggestproviderofhealthcarepaymentinNH,andtheycovergovmtworkers,teachers,firefighters,policeandotherfirstresponders.THEYDONNOTHAVEMENTALHEALTHCARECOVERAGEBASEDONAnthemsinterpretation.YoushouldinvestigateAnthemfortheirpracticesandFinethemforthedenialofwhatshouldbeappropriatepayment.Inourson'scasealonetheyhavecostthestate$130,000forhishospitalizationfrom12/12through3/13.Justdenialswithoutcarefulconsideration.Theseservicesshouldhavebeencoveredwithouthavingtohavetogotosecondandthirdappealsandultimatelyarbitration.IftheygetawaywiththispracitceononepatientthentheyareprobablygettingawaywithitonmanycostingtheStateMill ionsofdollars.KermitBrunelle,MDBedfordNH603-471-2537IwouldLOVEtotalktosomeoneaboutwhatAnthemisdoinginthisregard.

12/6/20132:00PM

19 Availabil i tyofemergencymentalhealthservices 12/6/20131:07PM

20 GETDEMOCRATSIN! 12/6/201312:45PM

21 Ithinkproactive,earlyinterventionandhelpwithcoordinationofservicesforfamilieswhohavechildrenwithmentali l lnessisimportant.Inourcase,weworkedveryhardtohelpoursonbutthesupportwasfragmented,hehadanIEPandattendedcounselingbuttherewasnoconnectionbetweenthetwo.AsaparentIhadtolearnhowtocasemanagemyson'sservices.Ifmorehelpwasavailableearlierwemayhavebeenabletopreventthedifficultandexpensiveroadthroughhisadolescentandearlyadultyears.PerhapsthispreventativesupportcouldbefundedthroughtheMedicaidLong-termprogram.

12/6/201311:55AM

22 JustthatIcheckedHil lsboroughCountyinthepreviousquestionbecausemysonl ivesthere.Il iveinMerrimackCounty.

12/6/201311:52AM

23 Itmayhavebeenchallengingformanybehavioralhealthandelderc lientsandtheirrepresentativestotakepartinanon-linesurvey.Myguessisthatasignificantlygreaterproportionofresponsesonthissurveycomefromdevelopmentallydisabledrepresentatives.Lowernumberofsurveyresponsesfrombehavioralhealthandelderpopulationsmaynotreflectalackofinterestbutratherl imitedaccesstoorskil lsinrespondingtoon-linesurveys.

12/6/201311:51AM

24 IamsorrythatwehavenoexperiencewithMedicaidLongTermCare,butwearehopingthatourchildmightqualifyandgetsomebettercoordinatedcare,suchasacasemanager.

12/6/201310:51AM

25 Pleasedonotletthisburdenfallonindividualfamiliesandletuspleasedoourparttohelpthosemembersofourcommunitythatcannothelpthemselves,thisisasimportanttomeaseducatingouryouth.Societiesarejudgedbyhowtheytakecareofthosewhocan'ttakecareofthemselveswehaveplentyofresourcesavailablesurelywecanmakethisapriorityPleasefeelfreetocontactmeJosephDoucet,[email protected]

12/6/201310:07AM

26 YES...dowhatIsneededtogetALLTHECONNECTINGFEDERALACCESSIBLE&AVAILABLEHELPtomatchourMedicaidDollar..otherwise,youareaWASTEaslegislatorstouslowincomefolks..IMEANIT!!!ANDIVOTE!!!!!

12/6/201310:06AM

27 WhyareyounotseekingfeedbackonManagedMedicaid-Yoursurveyisquitebiased. 12/6/20139:36AM

28 Ithinkit'sashamethatthementallyi l l ordisabledbetweentheagesof18and21havel ittletonosupport.Thisisacrucialtimeforfamilieswithchildrenwhoarelostinthesystemfortheseyears.Whataretheytodo?Helpisneededdesperately!

12/6/20139:21AM

29 Howmuchwevaluethesocialsafetynet. 12/6/20139:08AM

30 Onbehalfofallindividualsandtheirfamilieswouldverymuchliketoseechangesmadetothelongtermcareprogram(especiallyCFI)whicharemorepersoncentered;flexibleandperhaps"non-traditional"servicesthatreallymeetthedefinedneedsoftheindividualtostayintheirhome;andabovealltobeabletoaccesstheseservicesinatimelymannernotalmost8monthsfromthedateofanapplication.

12/6/20139:07AM

31 Ibelievethissurveyisimportantandhelpful. 12/6/20138:23AM

32 Justpleasehelpfamiliesthatarestrugglingmentalhealthisbecomingalargeneedforustostarthelpingmore.

12/6/20138:12AM


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33 Peoplewithserious,longtermmentali l lnessesneedanddeservetreatment.Moneyshouldnotbealimitingoption!

12/6/20137:54AM

34 AsIsaid,ifyouareinterestedinprovidingqualityservices,youfindgoodstaffandofferal ivingwage,benefits,support,supervisionandprovidetrainingalongthel inesthatiscurrentlyofferedviaDSPCErtificateProgramwww.dspcertificateprogram.com

12/6/20137:45AM

35 Iamalwaysconcernedwhenstategovernmentstartstotalkaboutredesigningservices,asthemotivationisalwaysaboutmoneynotqualityofcareofrec ipients.Iunderstandtheneedtobefiscallyresponsible,butIwouldlovetoseehonestconcernaboutthedaytodayl ifeofthosewhocannotcareforthemselvesduetodisabil i ty.

12/6/20136:26AM

36 Please,don'tgiveupthefight!Weneedyourhelp!Thankyou...:-) 12/6/201312:55AM

37 Thereisnol inkagebetweenthecourtsystemandmentalhealthsystem.Noonecaresaboutintegratingbackintothecommunityanditresultsinrec idivism.Therearenosubstanceabusetreatmentavailable

12/5/201311:57PM

38 no 12/5/201311:29PM

39 Whydon'twehaveasystemlikeVermont?Healthcareshouldbeavailableforeveryc itizen..notbasedonincomeorabil i tytopay.Getridoftheinsurancecompanies.Il ivedinEuropeforalmostadecade.Thehealthcarewassecondtonone.Wedid'thaveall"bellsandwhistles"I.e.electric beds,cabletelevision,interiordesignerlobbieswhatwedidhavewasgoodmedicalcareforEVERYONE!!

12/5/201311:13PM

40 HowcanweprovideincentivestoserviceproviderstoassistpeopletobelessdependentontheMedicaidsystem?

12/5/201310:31PM

41 HowgratefulthestatehasavestedinterestinmentalHeathandfamiliesthatl ivewithit 12/5/201310:31PM

42 IwishMedicaidingeneralwasmoreexceptedinthementalhealthworld..TheonlyplacesthatexceptMedicaidseemtobepoorlystaffedorunderstaffed..someoftheprovidersaretheworsttherapist,counseloranddoctorsIhaveeverseen,completelyincompetent..Ihavefrequentlyovertheyearshavehadtopayoutofpocketsomychildcouldseeamentalhealthdoctorstoadjusthermedicationandgetherstable.

12/5/201310:05PM

43 MedicaidexpansionisanobraineritisNeeded 12/5/20139:52PM

44 Theexistingprogrammybrotherisin@Rosemeadowfarmisexcellentandthefundingkeepshimascomfortableandactive.Pleasedon'tchangehiscoverageorcare.

12/5/20139:43PM

45 No 12/5/20139:09PM

46 Thankyoufortakingthetimetoaskouropinions.Ourstatecouldbeamodelfortherestofthenationintermsofhowtobestsupportourc itizensinneed.

12/5/20138:52PM

47 Itislessexpensivetosupportc l ientsintheirownhomesthanininstitutions,whichmeansthepropermedication,services,andsupportarecritical.Waiveco-pays,becauseitisuspayingforit,thefamilymemberbarelyhasenoughtogetthroughthe.Ortheyjustwon'tgototheprovidersbecauseoftheobstacles.

12/5/20138:44PM

48 Nobodytrulyunderstandhowveryharditistocareforpeoplewithseveredisabil ities.Sowhenyoustartchangingthingsitputagreatdealofstressonpeoplewhoalreadyhaveagreatdealofstress.Allpeoplewanttocarefortheirfamilymembersthebestwaytheycan,butmostofthepeoplewhowanttochangethingsandthosewhomakethelawsdonotgetit!!!!!

12/5/20138:42PM

49 Whatarethec lientsgainingnotthestate. 12/5/20137:52PM

50 Pleasehaveconsumers,familymembersandworkers(espcasemanagersandsocialworkersinthesystem)beinvolvedindevelopingasystemandinassessingtheeffectivenessandqualityofservicesbeingprovided.

12/5/20137:12PM

51 Peopleshouldworkevenifi tisonehourperweekorasavolunteer.Socializationskil lsareimportantandoftenlacking.

12/5/20136:55PM

52 Weneedmoretime.....forthosethatdonothaveadvocates....thesystemispoor.Itisashamehowthesepeoplearedevalued.Ourlawmakersneedtowalkintheirshoestogaininsight,empathyandcompassion.

12/5/20136:47PM


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53 I'mdisheartenedtohearthatthelegislaturehasnotheardfrommentalhealthstakeholders.ItestifiedseveralmonthsagoabouthowimportantMedicaidexpansionwouldbetopeoplewithmentalhealthissuesinNH.Itoldaboutbeinganursingstudentneedingtodomentalhealthc linicalswhenSNHMCdecreasedavailablebedsfrom30to10sothatwelosttheirunitasac linicalsite.Wewentinsteadtothestatehospitalwheretherewasanemptyunitattachedtotheonewewereassignedto.Itwasvacantbecauseofalackofstaffing,notalackofpatients.Therewasathreeweekwaitingl istwhilewewerethere.I'msorrythistestimonywentunrecordedandunnoticed.

12/5/20136:40PM

54 Thiscanworkbutmustinc ludetheMedicaidexpansionpopulation. 12/5/20136:37PM

55 Ourfamilyisamongthelucky.Wearewelleducated,wellconnectedandl iveinacompassionatecommunity.Iworrydesperatelyaboutthoseinourstatewhodonothaveouradvantages.NewHampshire,l ikesomanystates,hasaterriblybrokensystemforsupportingthosewithdevelopmentaldisabil i tiesandmentalhealthissues.Thewayswearenowrespondingareexpensive,ineffective,and,attimes,barbaric .Wemustmakefundamentalchangestohowwerespondtothoseinneed.Idonotbelievewemeantobethesocietywehavebecomeinhowwetreatthosewithdifficultiesarisingfrombraindisorders.

12/5/20136:32PM

56 Provideadequatefundingandleavethecurrentcommunitybaseddeliverymodelinplace.Itissimplydisgracefulhowthispopulationisbeingtreatedbythestategovernment.

12/5/20136:30PM

57 requirementsforlegalassistance 12/5/20136:19PM

58 Havinginsurancecompaniestakeoverthelong-termmedicaidprogramisterrifying! 12/5/20135:25PM

59 IamverypleasedwiththeservicesthattheAreaAgencyinmycountyprovides.Iwouldnotl iketoseethatchanged.Theyknowtheindividualsandthefamiliestheyserveandarecommittedtoprovidequalitysupportservices.

12/5/20131:32PM

60 Iwouldl iketyoseemoreconsumerswithdisabil i tiesl ikemyselfandmysistertohaveanincreaseinhisorherallowancefromtheirServicesCoordinators.Thereallowpeoplewithdisabil i tiesearnsveryl i ttlemoneyinhisorhertakehomepaychecks.It'shardtol iveonveryl i ttlemoneyaweek.It'stimeforRealChangesinthecurrentservicessystemtheAreaAgencieshasgottentoobiigthat'swhyconsumerswithdisabil itiesl ikemeandmysistergetsveryl i ttlemoneyintheirweeklyallowance.Thatistheproblemmanyofconsumerswithdisabil i tiesfacesforyearssincemovedtotheCommunity-BaseServicesfromStateinstitutional

12/5/20131:28PM

61 Howaboutastateincometaxorsalestaxtohelpfundprogramslikethoseavailableinotherstates. 12/5/201311:34AM

62 Notatthistime. 12/5/20138:58AM

63 Weworryaboutwhatwil lhappentooursonifsomethinghappenstous.Wehopehewouldcontinuetohaveahappyandhealthyl ifewithoutus.

12/5/20138:52AM

64 Ijustfeelthatalotofservicesareofferedtopeoplethatarenotwil l ingtotryandtheonesinthemiddlewhodotrydonotgetanyassistanceatall.Basicallyifyoutryyouarepunishedforit.

12/5/20135:32AM

65 Iamnotsurethatthequalityofcarewouldbethesameasitwasbefore. 12/4/201311:24PM

66 Pleasedon'tchangeourcurrentsystem.....Ifi t'snotbroken,don'tfixit!!! 12/4/201310:25PM

67 Ithinkveryfewpeopleingovernment(State&Federal)realizethesavingsthatareobtainedonthebacksoffamilymemberswhosupporttheirdisabledfamilymembers.Ithinkweprovideahigherqualityofl i feandmuchbettercareforourhandicappedson,thancouldpossiblybedonebythestate.SNFcareinmostplacesisinexcessof$10,000/month,wegetlessthan$1000/monthfromallsources,plussporadicrespiteandinhomeservices(nowaytodeterminevaluebecausenobodyknowsoriswil l ingtotell).

12/4/20139:38PM

68 Youshouldbeasking:Howcanwebetterinvolveconsumersinbeingapartoftheservicedeliverysysteminrolessuchaspeeradvocatesandcounselors?

12/4/20138:13PM


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69 Ihavehadalotofissueswithmyareaagency.Mydaughterl ivedatCrotchetmountainandgotadislocatedkneewhichwentuntreatedbecausenoonespokeupaboutit.Unti lIfinallydidandthenCrotchetMountaingaveher30daystomoveout.TheythenpalcedherinanotherNursinghomethatwouldnotdoanythingforherbuttheStatepaidthem$400.00adayforhertostaytheretemporarilyunti lIcouldgetmyhomereadyforher.ItoldtheStateIthought400.00adayforhertojustl ivetherewasveryexpensiveandaskedforabreakdownofthecost.OfcourseIwasdeniedandtolditiswhatitisanditwil l notchangesonoyoucannothavethatinformation.Theywouldnottoilether,takeherouttothecommunity.Sheprettymuchjuststayedinthehouse.Theywon'tgiveherPTanymoreduetotheseverityoftheknee.Iwasabletobringherhomebutshecannolongerstandandpivotorbearweightanymore.TheMooreCenterdidnothingaboutit.WearenowwithoutanaideintheafternoonandIhavetoleaveworkearlytotakecareofher.Icouldlosemyjob.TheMooreCenterissupposetohelpwiththisandisgettingpaidfrommydaughtersbudgettodothisbutithasbeen6monthsandnoaideandmyjobisgettingveryaggitatedatthemandmebutIcannotleaveherhomealone.

12/4/20133:40PM

70 NewHampshireisveryfortunatetocurrentlybeamodel(#2intheCountry)forthemanagementoftheABDWaiverprogramandthestructureofthecurrentAreaAgencysystemthatcancontractwithprovidersintheStatethatbestmeetthec lientsneeds.

12/4/20133:22PM

71 Iunderstandthatthisisaverydifficultstateforanyonetryingtoprovidehelptochildren,theelderlyorthedisabled.Iwishthattherewasanunlimitedpotofmoneyforthoseofuswhoneedservices.Thereseemstobeascarc ityofserviceprovidersinourarea...mybrotherwaswithoutamentorfrommidSeptemberunti lDec.2nd.Itwouldhavebeennicetobeabletorunanadvertisementthatofferedacompetitivewageandadecentnumberofhoursperdaytoworkwithhim.HekeepsaskingwhynoonelikeshimandIkeeptryingtoexplainthatheisl ikable,butthatmostpeopleneedajobthatpaysmorethanwehavetogive.Iamveryworriedthatsomethingwil lhappen,andnomedicaidwil lbeavailable.Atthatpoint,Imayhavetoquitmyjobtocareforhimandwewil lbothbeonthestaterolesforwelfare.Itwouldbegoodifthepeoplewhofundmedicarerealizethatamoregenerousfundingmightprovetobeamoneysaverinthelongrun.Moredisabledandelderlypeoplewouldbeabletoremainathome,iftheircaregivershadadequatesupport.

12/4/20132:51PM

72 Thepresentsystemhasprovidedourdaughterwithabudget,program,andlocalpersonneltomeetherindividualneedsinatimelymanner.WearehappywiththepresentsystemandhaveconcernsaboutdealingwithpeoplewhoarenotinvolvedwiththedevelopmentallydisabledMedicaidrec ipientsandtheirfamiliesonaregularbasis.Presently,itiseasytogetourquestionsansweredorreceivedirectionasneeded.Thelocalagenciesknowtheirc l ientsuniquestatusandunderstandtheneedforflexibil i ty.Wearehesitanttochangeamodelthatworksinaneffic ientandeffectivemanner.

12/4/20132:12PM

73 no 12/4/20132:11PM

74 IworkmainlyinRockinghamCountyandStraffordCounty,thoughIhavealsoworkedinotherNHcountiesaswell.IhavealsobeenacasemanagerforstudentswithIEP'sandhavebeeninvolvedwithseveralNHschooldistric tsattendingIEPmeetings.ItwouldbewonderfulifMedicaidcouldbroadentheguidelinesonhowtotrainpeopleonhowtosafelyassistsomeonetoeat.Thenursinghomesorverystric tonwhotheywil lallowtodothistaskandtheneedsoftheresidentstobeassistedduringmealtimesissti l l greaterthanthenumberofpeoplewhocanassistthem.Inotherwords,residentsarelosingweightandjeopardizingtheirhealthbecausetheyarenotabletoeattheirmeals.

12/4/201312:02PM

75 no 12/4/201311:54AM

76 Presentlyverypleasedwiththeservicesmydaughtergetsfrompathwaysinconcord. 12/4/201311:54AM

77 TheWaitl iststinksandhavingmyadultchildreceivinginadequateservicesp;acesastressonhimandtheentirefamily.Also,ourl imitedexperiencewithMedicaidmanagedcarehasnotbeenpositive.Thereisamistakeonmyson'sinsurancecardforhisMedicaidmanagedcare.WellsensetellsustogotoDHHSandDHHStellsustogotoWellsense.Thenwhatdowedo?Sitonthephonearguingforhours?

12/4/201311:14AM

78 Donotchangethesystemifi tnotbrokerdon'tfixityouwil lscrewitup. 12/4/201311:03AM

79 ThankYouandtheRegion8agencystaffforallthesupportmyfamilyhasreceivedovertheyears. 12/4/201310:50AM

80 Looksl ikeyouhaveitprettymuchcovered.ThanksfortheRespiteprogramandasImentionedbeforeaDentalProgramwouldbeappreciated.Thanksforallyoudorightnow.

12/4/201310:18AM

81 Fromtheoutsidelookingin,this"redesign"isvirtuallyguaranteedtobeatrainwreck.Why?Itgoesagainstalllessonslearnedfromahugecrosssectionofindustryandhistory.First,thenotionof"Ifi tisn'tbroke,don'tfixit"wascreatedforareason.Doesanyone_seriously_thinkthatthesecondratedsysteminqualitymetricsinthecountryisgoingtobereplacedwithsomething"designedbycommittee"andNOTturnintoadisaster?IguessIhaveansweredmyownquestionastowhywewil lneverbetoldwhy...

12/4/201310:09AM

82 Nothankyouforyourinterestinimproving 12/4/201310:06AM


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83 Itisdifficulttostayinformedasaguardian,butItry.Simplificationincommunicationcouldbehelpful.

12/4/20138:56AM

84 Howaboutpartneringtogethertheelderlywiththedisabledpopulationinwaysthatcanbenefitboth,l ikepersonswithdisabil i tieshelpingtheelderlyinhouseholdtasksl ikelaundryandc leaning,orgroceryshoppinganderrandswhichwouldbenefitbothandsavemoney!,!,,

12/4/20138:44AM

85 Iwouldl iketoknowmoreabouttheproposedplanthegrouphascomeupwith?Questions#19,#20and#28wouldnotallowmetochooseananswer

12/4/20137:22AM

86 Iwouldhopeyouwouldandcouldencourageyoungpeopletoenterthefieldofcaringforthedisabledandpaythemrespectfully.Andpleasedorememberthatmanydisabledfolksarebothphysicallyandmentallydisabled(mysisterhascerebralpalsyandmentalretardation).

12/4/20137:04AM

87 AsaGuardianIamextremelyconcernedabouttheramificationsofObamacareontheindividualsthatareinneedofbenefits.

12/4/20132:25AM

88 acknowledge,acceptandaddressthegreed/corruptionepidemicintheMedicaidsystem,addressthateffectively.....ablebodiedpeoplearefundedverywell(insouthernNHanyway)andarefartoocomfortablebeingwelfareprofessionals.theerroneouslydirectedfundsneedtobetakenawayfromthosewhoCANdoforthemselvesbutCHOOSEnotto......andforwardedtothosewhocannotdoforthemselves.InmyjobsIseeabuseofthe"system"everysingleday.peopledriveuptothefac il i tyinanewSUVBMW,dressedtothenines,jewelry,nails,hair,accessories,topofthel ineIPhone...yetwavetheMedicaidcardl ikeabadgeofhonor.thesystemisveryverybrokenanditappearsthatnoeffortisbeingtakentoaddresstheoutrageousabuseandfraud.Makeareportablefraudphonenumber/system....rec iprocityamongALLstatessothatoutofstateMedicaidcardsareabletobetracked.expirationofwelfarebenefitsafter18-24months.....thiswil lmaketheablebodied-but-lazypeoplemotivated.Welfareismeanttobeashorttermassistanceprocess,notal i felonggoal;toachieveyetNHisseeing3rdgenerationwelfareprofessionals.....i t'samindset,awayofl i fe...becauseithasbeenacceptableandaccommodatedandshouldnolongerbethecase.PleaseaddresstherootofthelackoffundsforthosewhoTRULYneedthehelp...

12/3/201311:36PM

89 Addinganotherlayerofmanagementtothecurrentsystemdoesnotseemlikeafiscallybenefic ialoption.Itonlyaddsanotherpartytakingapieceofthebudgetpie.

12/3/20139:21PM

90 No 12/3/20138:26PM

91 Ithinkyouneedtolookatwaystoimprovethecurrentsystem.IwouldratherseetheStatespendmoneyonupdatingfinancialmanagementsoftwareandconsolidatingbusinessfunctionsacrossareaagenciesthanonMCOfees.Inc ludingcommercialMCO'sisnottheanswerandwil lonlydriveupcostsovertime.

12/3/20135:17PM

92 No 12/3/20135:15PM

93 Leavethecommunitybasedareaagenciesinplaceandallowthemtodotheirjobs,whichtheydowell,morethanwellactually

12/3/20135:04PM

94 no 12/3/20134:39PM

95 No 12/3/20134:31PM

96 IthinkthattheeffectivenessofthecurrentofferingthatHeM525offersshouldbelookedatc losely. 12/3/20133:46PM

97 Iamveryconcernedthatthepresentsystemwil lbechangedandthatneedswil lnotbemet 12/3/20133:45PM

98 No 12/3/20133:25PM

99 Yes-pleasepreservethecurrentservicesandmyson'sresidentialplacement.It'sworkingwellthewayitis.ThegreatestfearIhaveishavingtodieandleavehimtothesystem.Iwanttoknowhewil lbeokay.

12/3/20132:19PM

100 PleasetelltheRepublicanswhoareagainstMedicaidandothersocialsafetynetsthatwithoutthesebenefits,manyofuswouldsimplyfallapartandbecomehomelessordie.Theimpactofhavingafamilymemberwithadisabil i tyissoprofoundthatyouhavetol iveinourshoesbeforeyoucanjudgeus.Itisunbelievablydifficultandstressful.Pleasetrytomakemaintainingthesebenefitsaseasyonusaspossible.Thereissomuchpaperwork,somanymeetings.Weunderstandthatthisisinplacetopreventabuse;however,onceyouknowusandyouknowthatthisdisabil i tyisfortherestofourl ives,pleasehavemercyandminimizetheredtape.

12/3/20131:22PM

101 Keepsmiling... 12/3/201312:58PM


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102 IfeelManagedCareforLongTermCareisnotthewaythestateshouldgo.MedicaidexpansionIamforasitwouldgivemanypeoplemuchneededhealthservicesThewayMedicaidismanagedhasworkedandourstateasbeenlookedatashavingoneofthebestsystems.Whychangewhatisnotbroken.BeingpartofanHMOorManagedcareinprivatel ife,Iknowitismuchmoredifficulttoobtainservicesinmanyinstances.MykidshaveBostonDoc's.IdonotwantthemtolosetheirDocstheyhavehadalloftheirl ives.AreaAgenciesaresoimportanttous.IdonotknowhowIwouldhavemanagedwithouttheirhelp.ThankYou

12/3/201312:22PM

103 Icannotstressenoughtheinadequateservicesavailabletochildrenontheautismspectrumthroughtheareaagency

12/3/201312:15PM

104 justkeepitworking--donotletother;notasimportantthings;takeawaythefundsthatarenecessarytokeephelpingthosewhoneedwhattheseprogramsprovide!

12/3/201311:56AM

105 Alwayspatientandhopefulforneededimprovementofeffectiveservicemodel. 12/3/201311:51AM

106 WENEEDMOREINFOMATIONINWRITTING,ANDNOTALLTHEPOLITICALTALKTHATISAROUND.

12/3/201311:23AM

107 Itwouldhavebeenhelpfultoknowwhichquestionsallowedmorethanonechoiceandwhichonesallowedonlyonechoice(afewdidbutallshouldhave).

12/3/201311:12AM

108 Donotknowifmygrantforhelpispartofmdicaidornot. 12/3/201310:32AM

109 Mysonisanautistic youngmanwhohasafairamountofcapabil ity,yetstruggleswithtrhyingtogettoapointwherehecanbeselfsuffic ient.Wesubsidizehimtothetuneof$300/monthplusunexpectedexpensesl ike,hiscaranditsupkeep,insurance,etc.;uti l i tiesforhisapartment,food,allthewhileheisworkingasmuchasheiscapableof,35-40weekinahospitalwithl i ttlechanceofupwardmobil ity.HencehemakesenoughtonotqualifyforSSDI(infactheispaying$3000backforanoverpayment-actuallywe'rehavingtodothatforhim),andthebecauseofa12centraise,henowinunabletoreceivefoodstamps...thiscycleseemsneverending,infactthesystemseemstoperpetuateitself,nothelpthosewhomightbecomeindependent,actuallygettoindependence.

12/3/20139:40AM

110 Ithinkthat90%ofthissurveywaswordedinawaytosupportexistingexpectationsofafullyoutsourcedStep2plan(10%isfine).Prettydisappointedinthequalityofl isteningfromthedepartmentoverthepast24months.Theconsultantthatwasbroughtintoruntheregionalmeetingswasabureaucraticslidepusher(goodwithstatisticsindeed).Butwhatgoodare"statistics"whenthedatagatheredisonlypartial?

12/3/20139:36AM

111 Thanksforallowingustheopportunitytotakepartinthissurvey 12/3/20139:15AM

112 no 12/2/201311:03PM

113 Iwouldn'tmindhavingtomanagemyson'saccountforhisservices,butwhatconcernsmeiswhowoulddoiti fsomethinghappenedtome.Atthispointinl i fe,wearenotsureifmysonwil leverbeabletomanagehisownfinancesorevencookforhimself.Iwouldhopethatsomethingwouldbedesignedinthenewsystemtoaccountforthisissue.IwoulddoitaslongasIcan,buteventually,Iwouldnotbeableto.

12/2/20138:14PM

114 TheStateofNHisnotwil l ingtoraisetherevenuenecessarytoprovidetheservicesneededbyitsresidents.Ithasapennywiseandpoundfoolishmentality.Ifeachindividual/familyweretoprovideanequalshare,thereisadequatedollarstogetthejobdone.

12/2/20135:01PM

115 NHhasoneofthebest,mostcosteffectiveDDservicesystemsinthecountry.Thereisnotaninabil itytofund,butanunwill ingnesstofundbythestatelegislature.

12/2/20134:00PM

116 Iwishthatthestatewouldgivefamiliesthatcarefortheirchildrenwithdisabil i tiesmoreflexibil i tyandhigherfundingstreamstoatleastmatchthefundsthatgotocaregiversthatdonothavefinancialoranemotionalinterestintheindividualsthattheyarecaringfor.Theyaredoingitmostlyforacheck.Itpayswellanditistaxfreemoneytothem.Theyarenotalwaysprovidingashighastandardofcarethatafamilywouldprovide.Thankyou!

12/2/20133:14PM

117 Ideallytherewouldbethesamelevelofprofessionalexpertisewithsimplified,flexible,andacrosstheboardaccesstoservices.Ifthenetworksforservicesarenotatareaagencies,communityhealthcenters,etc,therewouldneedtobenewlocations/agenciestoworkwith.

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118 TheprospectofturningLongtermcareforDDovertofor-profitpayorMCOsseemsil l advised.Itwil laddadditionalmarginrequirementsandthathascomeoutofservices.SelecteduseofMCOsforparticularissues...layprocessingbil l ingorhelpingtonormalizewaiversinthestate...mayyieldsavings.ThereisnoexperienceofMCOsinLongterm(Theysaidsoatagovernor'scouncilmeetingandthenationalsurveysconfirm),havenotrackrecordnationallyinpatient-centeredservices(asnationalsurveys/analysisconfirm)andtherehasbeennodataexchangedtoshowanywaytosetormeasuresavings.IcanseewhyDHSSwantstoimpactLTSSthatusesinstitutionalcare,butwhydoesDHSSinsistuponchangetoDDwhenithasasystemthathasworkedsowell??

12/2/20131:20PM

119 ItwouldreallyhelpmeiifIcouldfindaplaceinLancastertogetfit. 12/2/201311:33AM

120 ToomanypeopleandagenciesinvolvedandtheMedicaidManagedCareisjustonemorelayerofbeaucracytonavigate.Thetypicallaypersonhasnoideahowtoworkthroughthesystem.TheindividualsandfamiliesthatarebeingservedbyMedicaidalreadystrugglewitheconomicandhealthissuesandmayfeeloverwhelmedwithtryingtonavigatetheMEdicaidsystem.Theyalsomayhaveagingand/orcognitiveissueswhichl l imittheirabil i tytounderstandthiscomplicatedsystem.Mymother,whoisaretiredschoolteacherandveryintell igent,butwhoisalso89y.o.,isnotabletounderstandthissystem.

12/2/201311:02AM

121 Whatabouthousing?Whatchoicesdoesaparentorcaregiverhaveoncetheyarenolongerabletoprovidecareandservices?

12/2/201310:56AM

122 Managingthedailyl ivingneedsofDDpeopleisnotasc ience,orsuitabletobeingmanagedbyinsurancecompanies.Itisnotcut-and-driedl ikemedic ine(andeventhatisanart,toadegree).ThisisaboutmanagingLIVES,notmedicalissues,althoughmedicalissuesarealargepartofthel ivesofmanywithdevelopmentaldisabil i ties.ThispartofManagedCareisabouttheirprogrammingandresidentialneeds,theirqualityofl i fedeterminedbywork,leisure,sociall i fe,recreationandl ivingsituation--day,eveningandnight.Itisabouthowtheyarehelpedtospendtheirtimeinwaysthatareindividualizedtotheirabil i tyandinterests.Itisabouttheintangiblethingcalled"qualityofl i fe."Withthecomplexphysical,social,psychologicalandintellectualneedsofthispopulation,frombraininjurytoautismspectrumtoDown'ssyndrome,itisessentialthattherebelocalprofessionalswhoarepersonallyacquaintedwiththepersonstheyserve.Itisessentialthattheumbrellafundingsourcenotneedtomakeaprofit,therebyinevitablydecreasingthefundsavailableforthepeopletheyaresupposedtoserve.Theirmissionshouldbeonlyforthec lients,andnotatallforthebottomlineofaprivateentity.

11/29/20133:58PM

123 Wewereautomaticallyenrolledinaplanalthoughweareexemptunderqmby/slmby.Itdoesnotbodewellforthenewplanmeetingourspecific needsifthesystemdidnotevenknowwewereanexception.

11/29/20131:44PM

124 Itwouldbegoodifmorenon-traditionalmethodsofcarewereconsideredforfunding,especiallyintheareaofpainandmobil itymanagement.

11/28/20135:55AM

125 IwishwewereaskedaboutthewisdomofhiringinexperiencedMCOstoreplaceourfamily-governedAreaAgenciesbeforeourLTSSwerearbitrari lyrolledintoMC.Themathdoesn'tbearout.Ifwearealreadysostrappedforfundingthatthereisawaitingl istforservices(eventhoughRSA:171Astatesnoonecanwaitmorethan90days),itdoesn'tmakesensetohandoverupto20%offthetoptotheMCOsfortheiroverheadandprofits,beforeservicesevenbegin.Theywil lnotaddanyvaluenorsavingstodevelopmentalservices.Theywil lki l l i t.

11/27/201311:22PM

126 Everyonethinksareaagenciesaregood.Theyhavemediocreleadershipandarestuckinparadigms.Theyplayfavoritesandrunamok

11/27/20131:44PM

127 No. 11/27/201311:46AM

128 Youshouldaskwhatkindofserviceswearecurrentlygetting.Manyofthesequestionsdon'tapplytooursituation.

11/27/201311:32AM

129 IthinktheStatehasseriouslyerredincontractingwithlarge,out-of-stateMCO'stomanageLTSSforpeoplewithdevelopmentaldisabil i ties.

11/27/201311:25AM

130 Howimportantisittohavetheflexibil i tybetweenregionsofthestatewithregardtoavailableservicesandtravelneedsandflexibil i tywithcreationoftheraputic activitiesbecausenotraditionalonesareavailableinthearea.

11/26/20133:14PM

131 Iwishthishadaskedwhereareyouinthecontinuumofneedingservicesfromtimeofdiagnosisorsomethingsincethesurveyfeelsl ikeit'slookingatpeoplealreadywellestablishedinthesystemvs.thosewhoareonlyayearortwo(~4-5yearsofage)intotheirprogrammingthroughschoolandprivateinsurancemeans.

11/26/201312:46PM

132 Insteadoffeedbackonanagencyasawhole,individualfeedbackforthoseinleadershipshouldbepartofaqualityimprovementsurveyorsurveysforre-designation.

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133 MydaughterhastriedforyearstoworkwithVocRehabtofindworkandhasbeenunsuccessful.Itisherbiggestdisappointmentsowouldl ikethestatetocontinueitseffortstohelpthedisabledbecomeemployed.Theotherdifficultyshehasishavingamorenormalsociall i fe.Socializingforpeoplewithdevelopmentaldisabil i tiesisveryl imited.Havingservicesonthelocallevelhelpsasmuchaspossible.OurcurrentsystemisconstantlyworkingonprovidingsomesocialoutletswiththehelpofFamilySupportprograms.ItiswonderfulthatyoungfamiliesarebeingtrainedtomanagetheirservicesfortheirfamilymembersthroughTransitionprograms,etc.butfortheelderlyparentsdealingwithadultchildrenitisdifficultduetoagingandhealthissuessoIsti l l feelitisahugehelptoustohaveoptionsavailablethatdonotrequireustohandleeverythingourselves.Thatisnottosaywedonotwantorexpecttobeinvolvedindecisionmakingforourfamilymembers,ordonotexpectandwanttosupporttheminanywayweareabletobutcompletemanagementoftheirservicesseemsoverwhelmingtousnow.

11/26/201311:55AM

134 Theconcernoverthestatesabil i tytofundMedicaidshouldreallyhavebeenworded"wil l ingness"tofundMedicaid.Thefundsexistinthisstatebutwearenotalways"wil l ing"tospendthemoney-especiallyviataxdollars.

11/26/201311:06AM

135 Iamhopefulthatthenewmanagedcareprogramwil lworkmoreeffic iently,becosteffectivewhileprovidingthesupportsandservicespeoplewhoexperiencerequiretobesuccessfulinthecommunityandatwork.

11/26/201310:42AM

136 Ifanewprogramweretobeimplemented,howwouldthepeopleusingtheprogramlearnaboutalternativewaysofgettingnotonlythecorrectkindofcare,butalsowhatisavailable?Sometimes,ittakesagroupofqualifiedpeopletogetusontherightpathwiththecorrecttypeofservices.

11/25/20139:31PM

137 Leavetheareaagenciesalone! 11/25/20134:04PM

138 Pleasegivefamiliestheabil i tytochoosewhomanagestheirservices.Someareaagenciesareverygoodwhileothersareverybad.Ifwecouldchoosethebadonewouldgooutofbusiness.

11/25/20132:12PM

139 IamhappytodiscussanythingIhavewritteninmoredetailorworkatcreatingamoreeffic ientsystemoverall.MynameisElizabethWebster-Ihavea23yearoldsonwithautismandbi-polardisorder.Icanbereachedat603.785.2423Oneotherthing...Iamthesoleguardianofmyson,andamcompletelyresponsibleforeveryaspectofhiscare.Hisfather,whotakeshimtoMcDonaldstwiceamonth,hasnoresponsibil i tyforhiscareatall.WHY?Heshouldbecontributingtowardhisson'scare,andtowardcompensatingmeforthetimeIspendandl imitedl ifestyleIhavetol ivebecauseofourson'sdisabil itiesattheveryleast.ThisissomethingthatMANYmothersaresituatedwith,(andafewdads)andthereshouldbesomeactionbythestatetohavetheabsentparentcontinuesomeresponsibil i tyfortheiradultchild.

11/25/20132:09PM

140 Asarelative/careproviderforaprofoundlymentallyretardedsisterinlawthemostarduousorimpossiblethingtodoinrelationshiptogettingmedicaidfundingisthegoals.MysisterinlawhasthementalIQofabouta2yearoldandsocially/emotionallyprobablythatofa12yearold.Sheisolderandverysetinherwayswhichareextremelyifnotimpossibletoretrain/comprehendnewtasksorgoals.IguesswhatIamtryingtosayisthatIdothinkitisveryimportantformonthlyfeedbackandupdatesregardingthepersonreceivingbenefits.Buttosetgoalsatleastformysisterinlawisvirtuallyimpossible.

11/25/20131:58PM

141 Pleaseeliminatetheareaagenciesasarule.Theyareawasteofmoney.Therearesomanywonderfulnonprofitadvocatesandschoolsouttherethatoffertheirservicesatnocostthatthemoneywouldbespentsomuchbetterwithoutthem.AnareaagencyisNOTLEAN!Thankyouforthisopportunity.

11/25/201311:21AM

142 Again,recognizingthatoverthepasttenyearsmyhusbandandIcaredforbothgrandparentsandsisterwholiveswithmultipledisabil i ties.Bothgrandparentsdiedatourhome,andmyfamilymaintainedapeaceful,securehomeenvironmentduringthisperiod.MygrandparentsdidnotreceiveMedicaidfunding,whereasmysisterreliesonMedicaid(andMedicare)funding.

11/25/201310:20AM

143 WhileIamveryconcernedwiththestates'abil i ty'tofundthemedicaidservicesforindividualswhoexperienceadevelopmentaldisabil i ty/acquiredbraininjury,Iwantproof…objectiveevidencethatthistransitiontoamanagedcaremodelStep2wil lmaintainlocalcontrol,qualityofcare,andcutcosts.AgainIurgepolicymakerstodelaytheimplementationofStep2sothoughtwecanengageinamorethoughtfulassessmentofthistypeoftransition.

11/25/201310:17AM


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144 I'vel ivedinseveralstatesandfindtheservicesinNHtobebestsofar.ThereweregoodpointstoservicesinCaliforniaandHawai'i,butCaliforniasti l l hasinstitutionsandHawai'ihasapositiveAlohaculturewherepeopletakecareofeachotherbasedonthatmoresothanonafinancialmodel.Florida'sserviceswereterrifying.Iwouldpreferanationalsystemthatprovidedequalserviceopportunitiestoeveryonesopeoplecouldhavemobil ity,andfreedomtomovearoundthecountryeveniftheyhavedisabil ities.Thestatebystatemodeldiscriminatesagainstpeople.I'mthankfulthatmyunclecouldcometoNHandrecievegoodservices,butitshouldn'tbebasedontheluckofbeingbornintherightstate.Afederalsystemwouldbeabeast,ofcourse,butbeingabletohavemyunclel iveacrosstheborderinMaineanhourawayvs.aplaceinNH3hoursawaymakesabigdifferenceinhowmuchIcanvisithim.

11/25/201310:05AM

145 Whatareyourhopefuloutcomes?Howdoyouenvisionthishelpingasystemthatwedon'tperceivetobebroken?

11/25/20139:16AM

146 Iwouldl iketoseeaplanthatisincorporating,inc ludingcurrentareaagenciesinthiswholeplanningprocess.Ifeeltheyshouldbepartofthsplan.

11/25/20138:24AM

147 FUNDTHEWAITLIST 11/24/20136:59PM

148 Whatassurancedowehavethatmedicaidwil lcoverallofthecurrentservicesoursonreceives? 11/24/20136:21PM

149 Thereneedstobeaccesstothisinformationaspartofthediagnosisprocess.Thereneedstobeacentralizedresourceonlinethatiseasytoaccessandinformational.

11/24/20132:05PM

150 Flexibil i tyinchoosingserviceproviders(evenAreaAgencies),eveniftheyareoutsideyourregion,isvital.Everyagencyhasacertaincultureorareaofexpertise.Giventhattheneedsforthispopulationofconsumerscanbecomplexandthatmultiplediagnosescanexist,familiesshouldbeabletoselectanagency/providerwhosecultureandservicesmatchestheirneeds.Also,thereissometimesahierarchythatexistswithinanagency'sculturethatidentifiesindividuals'withcertaindiagnosesasmoreneedythanothersandmoreservicesaredesignedwiththeirneedsinmind,thusmakingtheservicestheyprovidelessrelevanttothosewithotherdiagnoses.Lastly,schooloffic ialsshouldbecomemoreawareofwhatlong-termcarecommunity-basedservicesareavailableforfamiliesinneedsincetheyareoftenapointoffirstcontact.

11/24/20138:56AM

151 Continuingthecurrentservicesismostimportantaspectofservicesprovided.Alsocontinuingaccesstocurrentproviderswithnolapseorinterruptioniskeyformyguardian'scomplexneeds.

11/24/20136:30AM

152 Mygoalformychildistomakethemasindependentaspossible,thusmakingthemlessofaburdenonsociety.Iwil l notbearoundforeverandtimeisticking.Allowmorefundstobeusedforcreativeadaptiveequipment.

11/23/201310:21PM

153 Verygladyouareexploringimprovements.IskippedtheearlierquestionsbecauseIgotbumpedoffthesystem~80%ofthewaythrough~1pmtoday.I'mhopingthepartIpreviouslyfi l ledmadeitthrough.Ifnot,pleaseemailmejodiell@comcast.net.Whatdoesonedoifachronichealthconditionisdiscoveredinapersonsteensanditisnotc learunti laftertheyhaveturned18thatthiswil lbelifelong,preventphysicallabor(notmentallabor),andresultsinproceduresthatyourtypicalyoungpersonhasnochanceofabsorbingthecostsfor?1)Thefirstmajorobstacleistogetinformationonwhathelpisavailableandhowtofindit,outtothenewlydiagnosedorstrugglingbutundiagnosed.AlthoughIknewmyyoungesthadaproblemfrombirthithastakenthirteenyearstogettraction.Iwasunabletogetmyoldestthehelpheneeded.Iusedtobeasc ientistbeforeitbecameimpossibletoworktheschedulerequired.Iamusedtodoingresearch,I'veresearched,Inetwork,IreadeverythingIcangetmyhandson.I'veaskedforhelp,andwearedrowning.Ican'tfigureoutwhythisissohard?Ican'tfigureouthowanyonemanages.Ican'tfigureouthowtofi l l outtheformswiththerequireddocumentationwhenyourchildrenwon'tallowthespecialiststodotherequiredevaluations.Whentheyoungadultfiresthechildorthepsychologistfiresthechild.2)Safeadulthousingoptions(notinstitutional)withthesupervisionneeded,itseemsimpossibletofindforthementallyi l l ,mildlymentallyimpairedortheautistic .Suchfunwhenallofitrunsinthesamefamily.

11/23/20136:55PM

154 WearefairlynewtoCDSandInHomeSupports.Notsurewhatfamilieswentthroughpriortothewayitisnow,butitcurrentlyworkswonderfulforus.Concernedthatwearemessingwithsomethingthatisalreadyworking.Hardtobelievewewil limproveonitgivenNHisratedasoneofthetopStatesinthecountrytol iveinforanindividualwhoexperiencesadisabil ity.Thewaitingl ist,whichwewereonandfriendsofoursareonisincredibelyfrustrating.Afriendofminemayloseherjobb/ctherearenofundsavailableforhersonandsheisforcedtostayhomeasthereisnoonetotakecareofhim.Ifwecouldfixthat...GREAT!

11/23/201312:33PM

155 Ithinkthisisgoodstepinreviewingoptionstoimprovethecurrentsystem--continuousimprovementisagreatidea.

11/23/20139:12AM

156 HowcanIgetinsurancecompanies,atech,whoeverworkswithmetoseeFCworksformeandIcandothis.PascalsaysifIpracticemoreIcandomoremyself.It'simportant.

11/23/20138:55AM


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157 Thisisscary.Idonotknowifwiththenewsystemthatmysonwil lhavewhatheneedstocontinuetoliveindepently.MyhusbandIhaveworkedreallyhardovertehlast10yearstoalltogetoursonwhereheistoday.Myson'sdreamishavehisownplace,haveagoodjobandtosomedayhavechildren.Asaparentitmyresponsibiltytoensurethatallmychildrenaregiventehopportunitytosuceedinwhatevertheirdreamis.Thefutureisuncertainformyyoungestson.Asaparentmybiggestfeariswhatwil lhappentomysononceIamgone.Ihavededicatedtheast10yearsndwil ldedicatetehnext30+yearsadvocatingforhisindependencetothebestofhisabiity.

11/23/20138:28AM

158 Allautismspectrumdisordersareontherise,aswellasauto-immunediseasesCombinethetwoandyouhavequiteacocktailofissues.Thereneedstobeaboardorpanelthatactuallylooksatbothasacombinedissue,notasindividualissues.Thetwoimpacteachothersignificantly,andnavigatingthesystemtoaddressbothoftheseisnearimpossible.Schoolsarethebiggestissue,butmyworkandIEPwillactuallybeamodelformorechildrentocomethrough.Hopefully,astheseservicesbecomebetter,parentswon'thavetodoallthework.Ishouldneverbeengivenadiagnosiswithoutalsobeinggivenresourcesandafollow-upappointment.Asaresult,mysonissignificantlydelayedbecausehedidn'treceivetheservicesheshouldhavegottenwhenhewasyoungenoughtobeimpactedbythem.

11/23/20138:11AM

159 Iamnotatalloptimistic thataredesignwil limprovetheDDsystem,butIwouldbeoptimistic aboutaredesigntomakeeldercareandservicesforpeoplewithseverementali l lnessmorel iketheDDsystem.WehaveoneofthebestDDsystemsinthecountryyetspendfarlessthanthenationalaverage-itain'tbroke,don'tfixit!IamnotsurewhatyoumeantbywhetherI'm"concernedabouttheState'sabil i tytofundMedicaid."IamcertainlyconcernedabouttheState'sWILLINGNESStofundMedicaid.

11/23/201312:55AM

160 Ithinktheareaagencymanagement,e.g.,directorsandtoplevelstaffshouldhavetheirsalariesreviewed,asitseemsthatsalariesarehigh,giventhattheagenciesfrequentlycomplainthatfundsarenotavailableforc lients.Thereshouldbeseriousquestionsraisedaboutanyonewhomakesasixfigure,orc losetoasixfigure,salary,giventhattheseagenic iesarenonprofits,andthemissionistoservepeopleinneed.

11/23/201312:48AM

161 TheMedicaidManagedCarecompaniesforacutecarethatarebeingimplemented.....shouldNOTbethecompanieshandlingStep2.Leavethecurrentsysteminplace.WedoNOTwantpeoplewhodonotreallyknowoursituationwithourlovedonesdecidingthingsfortheirprogram!Theydonotknowourareas,ourcommunities,the24/7thingsthatmaypopupatanytimeorhouretc.Theircallcentersarenotlocal.(well...oneisinBedfordbutwouldnotknowthewholestateareaeither)LettheMCO'shandletheacutecareissuesifneedbe,....butdoNOTletthemhandleLongTermcareforourdevelopementallydisabledoracquiredbraininjuredindividuals.KeepNH#1intheWORKINGsystemwecurrentlyhaveinplacewithourAreaAgenciesineachcounty.

11/22/201310:58PM

162 Theprocess/transitionofindividualscomingoutofschooltothe"workforce"orareaagencyandnotbeing"prepared"socially,emotionally,academically,becausetherehasnotbeena"great"connectionbetweenprovidersandtheschooldistric tstohelpourchildren.

11/22/201310:39PM

163 Formyfamilymember,thecurrentlong-term-careprogramhasandisworkingextremelywell.Iwouldbeconcernedifi twasturnedonitshead.Thereisalwaysfearoftheunknown,particularlywhenitcomestoprovidingappropriatecareforourmostvulnerablec itizens.

11/22/20137:02PM

164 Whydoyouthinkinsurancecompaniesoperatingforprofitwil l bebetterabletomanageservicesthanthecurrentsystemwhichparents/providers/partic ipantshavebuilt?Howdoweimproveonbeingthebestinthenationatserviceandamongthelowestoncost?

11/22/20136:40PM

165 DentalHealthisimperativeforalladultsandneedtosomehowbeinc ludedinmedicaidbenefits. 11/22/20136:04PM

166 Pleasedonotoutsourcetoafor-profitcompany. 11/22/20135:55PM

167 Thecurrentmodelisworkingjustfine.OurchildrenshouldnotbeguineapigsbecausesomeoneinConcordisafraidtoraisethegastaxtofi l l inbudgetholes.Fundthecurrentprogramandleaveitalone.

11/22/20135:36PM

168 IamveryconcernedabouttheprospectofStep2managedcareandhavemanyquestions.Afeware:Howwil lMCOsworkWITHlocal,experiencedareaagenciesversusreplaceareaagencies?MCOshavenolong-termcareexperience.Whyshouldn'tIbeconcernedabouttheremoval/dismantling(perhapsnotimmediatelybutwithinafewyears)oftheareaagencysystem?WhathappensiftheMCOsdon'trealizethesavingstheyexpectedandleavethestateaftertheareaagencysystemhasbeendeconstructed?WhyCOMMERCIALmanagedcareversusthemanagedcarethathasbeeninplacefordecades?

11/22/20134:45PM

169 Youshouldhaveasked"howmuchdoyoutrustthestate?". 11/22/20134:33PM

170 No. 11/22/20133:59PM

171 no 11/22/20133:55PM


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172 Icouldnotanswerallthesequestions,butdidwhatIcouldconsideringthepersonthatl iveswithme.Thereisnotmuchofanythingthatshecandoforherself.

11/22/20133:48PM

173 Morefundingforfamilies!Again,it'sallaboutsupportingfinanciallythosehomeproviderswhoalreadyreceiveapaycheckandthengetadditionalmoneyforfood,fuelassistance,c lothing,etc.Nothingcomesoutofpocketforthem.WhilefamilymemberssavetheStateofNHtensofthousandsofdollarsormoreandwedon'treceiveanywherethefinancialsupportthathomeprovidersdo.IfIweretosayIwasn'ttakingcareofmyfamilymemberanymore,aprogramwouldhavetobeputinplaceandthatwouldcostthestateatleast$100,000for24hourcare.Dentalbil lsshouldbecovered,notoutofpocketforfamilies.Morerespiteforfamiliesnothomeproviders!

11/22/20133:47PM

174 I'mconcernedthatworkingwithmanagedcareorganizationswil lbel ikedealingwithaninsurancecompanyratherthanwithprofessionalswithexpertiseintheI/DDworld.WhilemanagedcaremaydecreasetheamountofexpensivevisitstotheERbyregularMedicaidpatients,Iamnotconfidentthattheywil lbeabletodealwiththeI/DDpopulationeffectively.

11/22/20133:29PM

175 myhusbandhasbeenpermanentlydisabledforover30yearssincehisdiagnosisandisinthesevereprogressivestageofhisdisease,buthiscommunitybasedhomecarehasbeenhissavinggrace.

11/22/20133:15PM

176 Thewaitingl istforadultservicesneedstobeabolished.Thestateneedstofundtheseprogramsmoreresponsibil ly.

11/22/20133:14PM

177 no 11/22/20133:06PM

178 Goodsurveyquesitons!Thanksforasking.Ihopepeoplel isten. 11/22/20132:55PM

179 HowhavetheAreaAgenciesandschoolshelpedorhinderedourl ives.I'veknowntomanyfamiliesthatwouldn'ttakethestressandstrainoftheconstantbattlesandmanydidn'tmakeit.

11/22/20132:51PM

180 no 11/22/20132:19PM

181 Pleasegiveusfreedomfromareaagencies. 11/22/20131:58PM

182 IhavenoconfidenceinhowtheStateofNHhaschosentoundertakeMedicaidreforms.Paymentreformisalsoatypeofcultureshift.ThereneedstobeagradualrolloutofSIMfundedpilotprojects-notthe1yeartimelinecontemplatedbyDHHS.Moreover,successdependsonhavingexcellentITandac learandcommonappreciationforthequalitymetricsusedtorewardproviders.NHisalongwayfromdevelopingthisinfrastructure.Iamalsohighlyskepticalabouttheroleofcommercialinsurncecompaniesinthisreformeffort.Thelongtermcaresystemforpeoplewithdevelopmentaldisabil i tiesinNHisalreadyverylean.IdonotseewheretheMCO'swil lfindmoneyforapositivereturnontheirinvestment.

11/22/20131:51PM

183 Ifyoul iveinaruralcommunityhowlikelytoyouthinkitisthatyouwouldorcouldreceiveserviceslocally?Theproblemforuswasthatoursonneededservicesforbothhisdevelopmentaldisabil i tyandmentali l lnessthatwerenotaccessibleinasmallruraltown.SowhenNHlooksatmodelsthatinc ludecommunitybasedprogramstheyoftenmodelthemaroundmajorc ityhubs-whicharedefinitelynotlocal.Supportgroupsandpeersforhimwere30milesaway-sothestatehadtheprogramsbuttheywerenotaccessibletoourchildbecauseofourgeographiclocation-whichhasmeantthatinordertogethimtheservicesheneeds,ontheregularbasisheneeds,hehadtomovetoalargec ityandgrouphousing-whichhehadtowaitforwhileourlocalpolicedepartmentactedasthe"absentia"servicewhilewewaitedforplacement(overtwoandahalfyears).Itjustdidn'tseemhumane,responsiveorcompassionate.

11/22/201312:35PM

184 Alocal,within20minutes,officeaccessiblebypublic transportationisessentialinprovidingthehighlypersonalone-to-oneconsistentrelationshipsthatarerequiredinthedeliveryofqualitycommunitybasedlong-termcare

11/22/201312:15PM

185 HowwouldyouchangeourSystem.IwouldneedtoeliminatetheoverheadofmoniesusedwithinOurSystem.UsethesemoniestostopthecycleofconstantturneroverinDirectCare/Providers.IncreaseDirectCarerateofpay,offerMedicaidtoallHomeProviders/Families,after3yearsofServiceforabuyinof100-200monthlyBeflexiblewithDayProgramHours..15-30hrsaweek.NoteveryoneWantstobeoutinthecommunityfor30hrsaweek!!FindawaytoallowsomeonetopurchaseneededitemswithouthavingtopurchasethroughMEDICAID.Aperfectexample.Icouldhavepurchasedafullelectric medicalBedfor800butnoMedicaidwouldnotapprovesoonewaspurchasedforthousandsofdollars.QualifymeforMedicaidpurchasesandIcouldsaveyoulotsofmoneyandsti l l earnagol iving!!

11/22/201312:12PM


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186 Anysystemhastounderstandthevulnerablepositionthepeoplewhoareonthereceivingendarein.Wekeeppeopleinpoverty,segregation,congregationandoverallindevaluedrolesinourcommunities.Medicaiddollarscouldbeusedtoelevatepeopleincreativewaystobeactivepartic ipantsintheircommunitiesaswellastakingcareoftheirhealthandsafetyneeds.Andthesupportsthepeopleneedmustbegivenbycompetentstaffwhoseethevalueandtalentsofthepeopletheyareserving.Thestaffneedtobevaluedbytheoverallsystemthroughpayandbenefitsandongoingtraining.Leadershipshoulddevelopbottom-uppracticesandfigureouthowtobestsupportandnurtureboththepeoplereceivingandgivingthesupports.Lettheresourcesgettothepeoplec losesttothesituation.Bottomupandnottopdown.

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187 TheAreaAgenciesneedtoknowthatwhat'sbestforoneisn'tnecessarilybestforall.Developmentallydisabledalsol iketogrowupandl iveontheirown(orfeell iketheyare);andgettingstuckinalow-income/elderlyapartmentwithafewhoursofservicesaweekdoesn'tworkformanythatarestuckwiththatmodel.Ihearhorrorstoriesofthe"caregivers/roommates"thattakeadvantageofthiseadults.

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188 Idonotwantmanagedcaretakingoverthelocalsystem.Ibelievethatwouldbeahugeerrorbecausethesystemnowworksverywell.It'saboutmoneyandpoliticsanditshouldnotbe.

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189 Takephasetwooutofthepicture!!!! 11/22/201311:41AM

190 Iamconcernedthattheresultsofthehardworkdonebyagroupofdedicatedfamiliesandprofessionalsoverthelast30yearsmaybediscardedbyabureaucratic /business-orientedprogramthatlooksonlyatbottomlinenumbers(dollars)ratherthanthehardertodefine,buteasilyrecognizableresults.

11/22/201311:40AM

191 Ifeelstronglythatlong-termsupportsshouldnotbeinc ludedinthenewManagedCareModelofMedicaidServices.IfeelthattheindividualsreceivingsuchservicesaregoingtobetheonestosufferfromthisdecisionandtheyaretheoneswhoneedtobeprotectedbytheStatebecausemanyarenotinapositiontoadvocateforthemselves.

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192 CommunityBridgesandadmissiontoRobinhil l Farmhasbeenananswertoourprayers! 11/22/201311:13AM

193 GrouphomeproviderscouldsavemoneyandIwouldlovetoseesomeone(Iwoulddoiti fIhadthemoneyandknewhowtodoit)getagovernmentgrantabuysomeoldmillbuildingorvacanthotelandmakemorehousingfordisabled/handicappedc itizenswhereservicescanbeprovidedmoreeffic ientlyorgiveoptionstohavethistypeofhousingtothosewhowouldbenefitfromthistypeofc losemonitoringbutdon'trequirefullservices...semi-independenceforthosel ivingthere-asafeplacetobe..

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194 Choice,choice,choiceandmorechoicewithadequatefunding. 11/22/201311:01AM

195 Idon'tthinkthestateunderstandhowharditistotakecareofapersonwhoisdisabledandhowmuchhelptheyneedtodol ifeskil ls.ThefactthattheyareathomewiththerefamilyasanadultwhyshoulditmatterhowmuchImake.Theprogramsshouldbebasedonthedisabledpersonincomewhichisnotalotofmoney.Wearetakingaboutsomeonewhowil lNEVERbeabletobeleftalone.

11/22/201310:56AM

196 Weareextremelyconcernedthatifstage2ofmanagedcaretakeseffect,alloftheoureffortsandhergainswil ldeteriorateasnoneofthemco'shaveexperiencewiththispopulation.Webelievethemco'swil luseddtobalancetheirbudgetsandpayshareholder'sandthatprofitwil l betheirtopprioritywhileourfamilieswil lbecomeadistantsecondplace.

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197 redflagsshouldgoupwhensomeonehasbeenoutofserviceisfor4monthsoutforamonththat'swhentheflagshouldgoup.Andthenitshouldforwardrighttosomeonethatwil lhelpifi thasn'tbeentakencareof.IwasluckyIgotthenameofsomeonetouseandIforwardedeverythingthatIforwardedtotheareaagencythatgotpeoplehoping

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198 IwishthissurveyfocusedmoreonmakingtheapplicationprocesstoaccessLTCservicesmoreaccessibleandquicker.Peoplearewaitinginexcessof3monthstofindoutiftheyareeligibleforservices,andthenitcanseveralmoremonthstogetservicesinplace.

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199 PleasebeVERYcarefulwhentryingtochangewhatisaveryfrugalapproach(intheUSNHisinthelowest3rdspentpercapitaonservices)withhighqualityoutcomes(2ndinthenationaccordingtheCPgroup)l ikewehavenow.ThereisalotthatIamgivingtothestatefreeofchargethatImightnotbeabletogivewithoutsomeofthesupportsIget.Donotdismantlefamilysupportcouncilsandareaagenciesinthenewsystem.Thesearehighlyeffectiveorganizationsthatworktoprovidegoodoutcomesforfamilies.Iwishthatmedicaidwouldworkmorel ikeanIRSmodelwherethereistrustwithperiodicaudits.Youtellthegovernmentwhattheyoweyou,theypayassumingthatyouarehonest.ItisagoodassumptioninmycasebecauseIamhonest.Theneveryonceinawhilepeoplewouldbeaudittedtoseeiftheyareactuallyhonest.

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