The Arkansas Mental Health System for Children

...A Family Perspective

Introduction Whennewchildrencomeintotheworld,theybringasenseof hopeandanticipationfortheirfamily.Familiesviewthischildastheirhopeforthefuture.Formostfamiliesthisanticipationculminatesintheachievementof importantmilestonesasthechildgrowsupandmovesintoadulthoodasaproductivememberof society.

Foranevergrowingnumberof families,however,thean-ticipationturnsintohopelessnessandfrustrationwhentheirchilddemonstratesabnormalbehaviororothersignsof developmentaldelays.Familiesseekinghelpfortheirchildoftenbecomefrustrat-edastheyattempttoweavetheirwaythroughamazeof encounterswiththeirchild’sschool,thelegalsystem,andacomplexsocialservicesystemthattoooftenproducesdeadendreferrals,limitedchoices,andservicesthatareinappropriate.Intheend,manyfamilieslosehope.Theirchildren“ageout”of thesystemwithlittleornomechanismforcopingwiththeirmentalillnesses.

Inthesummerof 2006,Arkansasembarkedonajourneytodevelopabettersystemof careforchildrenwithmentalillnessesbyassemblingagroupof stakeholdersandchargedthemwiththetaskof identifying solutions. A system of care is defined as a coordinated network of community-based ser-vicesandsupportsthatisorganizedtomeetthechallengesof childrenandyouthwithseriousmentalhealthneedsandtheirfamilies.Thecurrentmentalhealthsystemconsistsof avarietyof providers,includingschools,outpatientproviders,residentialtreatment,andacutecarefacilities.Theseservices,however,arenotnecessarilycoordinatedtoensurethatchildrenandtheirfamiliesarereceivingthebestpossible services to meet their needs or to ensure availability of those identified services.

The first priority of this group was to ensure that parents and families were engaged in the process.Aspartof thestakeholders’work,theArkansasGeneralAssemblypassedlegislationtobegintheprocessof improvingthechildren’smentalhealthsystem.TheChildren’sBehavioralHealthCareCommissionwasformedandnewFirstLadyGingerBeebeledalisteningtourthroughoutthestatetogainvaluableinsightsfromtheexperiencesof parents.Thisreportisacompilationof theinformationcollectedduringthetourandincludessuggestionsfromparentstotheCommissionforimprovingthechildren’smentalhealthsystem.

Table of ContentsAbout the Listening Tour 2The Results 4 The Role of Schools 4 Fragmented Supervision of Care 5 Lack of Family Support 7Parental Suggestions 7 Conclusion 10

About the ListeningTour Thepurposeof thelisteningtourwastogiveparentsanopportunitytosharetheirexperiences,bothpositiveandnegative,abouttheArkansaschildren’smentalhealthsystem.Wehopedtogleannewinsightsfromtheirstoriesaboutwhatfamiliesneedtoprovidebettercarefortheirchildrenandtoidentifywaysthesystemcouldbettermeettheirneeds.Keygroundrulesforthevisitswerelaiddownatthebeginningof theproject,including:

Thelisteningtourwouldfocusonfamiliesandchildren.Therewouldbeotheropportunitiestohearfromprovidersandinstitutions.ThevisitswiththeFirstLadywouldbeintimateandcomfortable.Theywouldbeheldatnon-clinical,non-threateninglocations.Participationinthevisitswouldbelimitedtoparents/caregivers,Mrs.Beebe,andherstaff.Experiencedparentadvocateswereusedasfacilitatorsandrecorders.Thesamefacilita-torsandrecorderswereusedateachsessiontoensureconsistency.Presswasnotallowedatthevisitstoprotectthefamilyandchildren’sprivacy.

Thegroundruleswerefollowedduringeachvisitandvaluableinputwasreceivedfromeverypar-ent.Logistics and Demographics

Thevisitswerestrategicallyplannedtoen-sureeveryareaof thestatewascovered.Thelistonpage 3 reflects the locations and dates of the visits. Duringthelisteningtour,85familiessharedtheirstoriesandexperienceswiththeArkansasmentalhealthsystem.Manyof thesefamilieshadmorethanonechildwithamentalillness.Thechil-drendiscussedrangedinagefrom5to19.

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Thefollowingmedicaldiagnosesweremen-tionedduringthevisits:

ADHDAutismBi-PolarDepressionPervasiveDevelopmentalDelaySchizophreniaObsessiveCompulsiveDisorderAnxietyPostTraumaticStressSyndromeSensoryDisorderOppositional Defiance DisorderGenderIdentityDisorderMoodDisorderMentalRetardationTraumaticBrainInjury

Amajorityof thechildrendiscusseddur-ingthevisitshadmultiplediagnoses.Manyhadbothadevelopmentaldisabilityandamentalhealthdiagnosis.Mostof thechildrenwerebeingservedbymultiplesystems,includingthementalhealthsystem,thejuvenilejusticesystem,andtheeduca-tionsystem.Outof the85families,10wereledbygrandparentsraisingtheirgrandchildren,2wereauntsraisingtheirniecesornephews,2werefos-terfamilies,and2wereadoptivefamilies.Of thefamiliesthatprovidedinformationconcerningtheirethnicity,46wereCaucasian,20wereAfrican-Amer-ican,4wereNativeAmerican,and1wasHispanic.

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The First Lady Listening Tour

Date City Location

May 8, 2007 Paragould Chamberof Commerce

Jonesboro Godsey’sRestaurant

Blytheville MethodistChurch

May 15, 2007 Morrilton Universityof ArkansasatMorrilton

Conway AntiochBaptistChurch

May 22, 2007 FortSmith PrivateHome

Springdale TheJonesFamilyCenter

Huntsville SeniorAdultCenter

May 29, 2007 Hope SouthernBancorpCommunityRoom

Texarkana Cattleman’sSteakRestaurant

Arkadelphia BenElrodCenter

June 12, 2007 Camden FirstUnitedMethodistChurch

ElDorado HealthworksFitnessCenter

PineBluff DonW.ReynoldsCommunityCenter

June 21, 2007 Benton FirstUnitedMethodistChurch

June 26, 2007 ForrestCity EastArkansasCommunityCollege

Helena DeltaAHEC

Marianna CommunityHouse

July 3, 2007 LittleRock NAMI-Arkansas

The Results Thereareapproximately60,000childreninArkansasreceivingsometypeof mentalhealthservices.Themajorityof thechildrenaresuffer-ingfromadjustmentdisorders,temporarydelays,orbehavioralissuesthatarebeingadequatelyad-dressedwithschool-basedmentalhealthservices,earlyinterventionservices,oroutpatienttherapy.Thefamiliesparticipatinginthelisteningtourrep-resentamuchsmallersub-setof familieswhohavechildrenwithseveredisturbancesandareinveryfragilestates.Eventhoughtheyrepresentasmallernumber,theyare“highneed”familieswithchildrenwhoarethemostvulnerableandwhoposemajorchallengestothesystemsthatservethem.Thesefamiliesneedanddeserveatruesystemof careandsupportiveenvironmentthatcanbothhelpstabilizetheirchild’smentalhealthconditionandprovidemoreeffectivetreatmentoptions.Theinputgath-eredfromfamiliesduringthelisteningtourprovidestremendousinsightintotheweaknessesof thesystemandwaysthatitmustbeimproved. The visits were free flowing and lasted about anhourandahalf.Theconversationwaspromptedbythreequestions:

Tellusaboutyourchildandtheirillness.Tellusaboutyourexperiencewiththechildren’smentalhealthsystem.Whatcouldyouuse/haveusedtohelpyouwithyourchild?

Theutilizationof thesequestionsandskilledparentfacilitatorsresultedinverymeaningfuldis-cussionbetweentheFirstLadyandfamilymembers.Severalchildrenwithamentalillnessattendedandaddedarichnessanddepthtotheconversation.Althoughthevisitswereheldatvariouslocationsthroughoutthestateandincludedadiversegroupof familieswithawiderangeof mentalhealthdi-agnoses, the issues identified were very similar at all thevisits.Threemajorthemesemergedthroughoutthediscussions:theRoleof Schools,FragmentedSupervisionof Care,andLackof FamilySupport.

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The Role of Schools Acrosstheboard,theissuethatfamiliesvoicedthemostconcernsaboutwasdealingwiththeeducationsystem.Illustrativecommentsinclud-ed:

“Iknowtheyaretryingashardastheycanbuttheydonotknowhowtodealwithchildrenwithmentalillness.”“IhaveaIEPbutitisnotfollowed.”“Ican’tworkbecauseIhavetogototheschooleverydaytohelpthemdealwithmychild.”

Ingeneral,thestoriesandexamplessharedbyfamiliesfellintothefollowingthemes:Utilization of Best Practices in the School Setting for Deal-ing with Children with Mental Illness: Severalparentsprovidedexamplesaboutinappropriatemethodsof discipliningandteachingchildrenwithmentalillness.Oneparentsharedherexperiencethatherkindergartenagedaughterwasbeingtiedtoherchairtokeepthechildinherseat.Anothermothersharedthathersonwasforcedtositwithhisbacktotheclassandteacher,withhisheadtouchingthewhiteboard.Anotherparenttoldastoryaboutarrivingattheschoolafterreceivinga call to come pick her child up. The child was five yearsoldandshefoundhimfacedownonatablewithhishandstiedbehindhisback.

Manyof thechildrendiscussedduringthevisitssufferfromextremesymptoms,exhibitdis-ruptive behavior, and are difficult to manage. How-ever,basedonthestoriestold,thereisapparentlyalackof knowledgeandskillsamongschoolperson-nelabouthowtodealwithchildrenexhibitingthesesymptoms.Whilethestoriesabovearejustthreeexamples,nearly80%of theparentsrecountedstoriesaboutreceivingcallsfromtheirchild’sschoolrequestingthattheparentscometotheschoolbecausetheschoolwasunabletodealwiththeirchildren.

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Utilization of Alternative Learning Environments: AlternativeLearningEnvironments(ALE)havetraditionallybeenusedtoseparatedelinquentstudentsfromtherestof thestudentpopulationinanefforttoretaintheminatailorededucationalenvironment that will help them finish school. Severalparentsreportedthatalthoughtheirchildhasamentalillness,theywereplacedintheschooldistrict’sALEprogramratherthanaspecialeduca-tionclassthatwouldhavebeenmoreappropriategiventheirchild’scondition.WhileintheALEclass,theirchildrenexperiencedexcessivebullyinganddidnotperformwell.AtleastoneparentsaidtheyhadtriedtohavetheirchildremovedfromtheALEclass,butwasunsuccessful.

Transportation Issues: Therewerenumerousexperiencesconcern-ingpublicschooltransportation.Theenvironmentonschoolbusesseemstoexacerbatethesymptomsof mentalillness.Atleasttwostoriesweresharedinvolvingachildwithmentalillnessbecomingdistraughtbecausetheyhadbeentaughttouseseatbeltsandthebusdidnothaveseatbelts.Inseveralinstances,theirchildrenhadbeenbulliedandgoad-edintoinappropriatereactionsbyotherstudents.Onesituationactuallyescalatedintoastudentat-tackingthebusdriver.Accordingtotheparentsrelayingtheirexperiences,theschoolpersonnelinvolvedlackedtheknowledgeabouthowtodealwithchildrenwithmentalillness.

School Based Mental Health Services Vary from School to School: ArkansasMedicaidandtheDepartmentof Education have worked together for the past five totenyearstobringmentalhealthservicesintotheschools.Accordingtostoriesfromtheparents,thereappearstobelittleconsistencyinhowtheschoolsareprovidingMedicaid-basedmentalhealthservices.Severalparentstoldstoriesof schoolschangingprovidersandhavingtogetanewprovid-erwhentheywerehappywiththepreviouspro-vider.Otherstoldstoriesof nothavingaccesstoservicesonschoolcampusbecausetheirschooldidnotprovideit.Severalalsostatedthattheywereto

receiveservicesoncampusbutthetherapistnevershoweduporthesessionswerealwayscanceledforvariousreasons.Parentscitiedthreevariationsof howservicesareprovidedintheschools:

Theschooldistrictallowsallproviderstocomeintotheschoolandseethechildoncampus.The school contracts with a specific provider andtheyaretheonlyoneallowedoncampus.If youchoosetoseeanotherprovideryoumustdosoonyouron.Theschooldistrictdoesnotallowanyprovidersoncampusandtheonlycounselingavailableoncampusisbyschoolstaff.

Fragmented Supervision of Care

Thesecondmajorcategoryof parentalcon-cernsinvolvedissuesaroundsupervisionof care.Samplecommentsincludedthefollowing:

“Icouldn’tgetmyphysiciantoseethatmychildhadaproblem.”“Mychildhasbeeninthesystemfortwelveyearsandheisalwaysgettingadifferentthera-pist.”“Wewereforcedtochangeprovidersandtheychangedmychild’smedications.Mysonwasallmessedup.”“Mychildhasbeenkickedoutof severalplace-mentsandtoldthereisnothingwecando.Ican’t find anyone who will help us.”

Achievinganaccuratediagnosisandconsis-tent quality treatment are difficult to achieve in a systemthatlackstrainedprovidersandcaremanag-ers.Additionally,Arkansasseemstolackexpertiseindealingwiththeseverelyemotionallydisturbed.Theextremelyvolatilechildneedsthemostintensetreatment,yetmanyfacilitiesandprovidersdonotfeelcapableof handlingthemanddonotwanttoassumetherisk.

Accordingtotheexperiencessharedbysomeparents,theirchildrenmaybeextremelyvolatileoraggressiveandareoftendischargedfromfacilitiesandnotallowedtoreturn.Othersarethreatened

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withplacementinDivisionof YouthServicesfacili-tiesasaremedyfortheirbehavior.Parentsandprovidersalikeseemtobeatalossastohowtotreattheseextremecases.Thefewprovidersinthestate that are qualified to deal with these cases have waitinglistsforuptoayear.Thisresultsinmanychildrenwhoaredangerouslyaggressivemovingfrom provider to provider in an attempt to find treatmentandcarecoordination.Bothof whicharerarelyachieved.

Threeareasof concernsemergedwhentalking about supervision of care. They are briefly discussedbelow:

Difficulty in Obtaining an Adequate Diagnosis: Oneconcernraisedbyparentshasbeenthedifficulty of obtaining an accurate mental health diagnosisfortheirchild.Whileresearchshowsthatit is difficult to diagnose children at an early age, it isnotimpossible.Someparentsexpressedthattheyhavebeenseekingadiagnosisforasmanyastwelveyears.Theirchildisclearlyexhibitingbehaviorsthatindicateanillness,butlocalprovidersareunabletodetermine specific conditions. Some parents felt theirproviderwasapplyingthebestguessmethodwithadiagnosis.Diagnosingachild’sillnessisthefirst step in obtaining treatment for their child.

Primary Care Physicians are Inadequately Trained in Children’s Mental Illness: Thechild’sprimarycarephysicianisoftenthe first step to receiving a diagnosis or further as-sessmentof theirchild’scondition.Unfortunately,mostprimarycarephysiciansarenottrainedinthespecialtyof childhoodmentalillnessandareun-equippedtoeffectivelytreattheseconditions.Manyparentsexpressedfrustrationwithphysicianswhotoldthemtheirchildwouldgrowoutof thebehav-iortheywereexhibitingorsuggestedthattheparentneededtoimprovetheirparentingskills.Onepar-entsharedhowshehadbecomesofrustratedthatshecalledherphysicianforhishomeaddresssoshecoulddeliverherchildtohimsohecouldcareforhersonforaweektoseeif hisbehaviorwastruly“normal.”Anotherparentsharedthatherphysiciancontinuedtoraiseherdaughter’smedicationdosagetothepointthatitwaslifethreatening.

Lack of Child Psychiatrists: Whileamedicalhomeforthesechildrenisvital,thechild’sprimarycarephysicianmustbeabletoworkwithachildpsychiatristwhocanworkhandinhandwiththechild’sprimarycarephysiciantoensure a child is accurately diagnosed and sufficient treatmentisrecommendedandfollowed.Childpsychiatristsarethehubof careforchildrenwithseverementalillness.Theyhavethemostexpertiseandtrainingfordiagnosingandtreatingmentalill-ness.Theycanprescribemedicationsandprovideappropriatecounseling.Theexperiencesrelayedbyparentsduringthelisteningtour,however,clearlyindicatethatmanychildrenhadneverseenapsy-chiatristmuchlessseenachildpsychiatrist.Severalparentsreported“Ihaveyettoactuallymeetmychild’sphysician”or“Itrytocontactmyphysicianbutheisneveravailable.”

AccordingtotheArkansasMedicalSocietythereare23childpsychiatristsinthestateand15of thosearelocatedinCentralArkansas.Manyadultpsychiatristsaresupervisingthecareof childrenbut lack any specific pediatric training. Primary care physicianswhoarenottrainedtoassessortreatmentalillnessareontheirownbecausethereare

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insufficient numbers of child psychiatrists available forreferralsorconsults.

Lack of Family Support

Inadditiontoschoolsandthesupervisionof care,thethirdmajorissueraisedbyparentswasthelackof familysupport.Thesocialservicesystemsinmost states are very complex and difficult to navi-gate.Familieswithchildrenincrisisareoftenin-volvedwithmultiplesystemsthatrequiretheparenttoeducatethemselvesinordertodeterminehowtoaccessthebestservices.InArkansas,familieswhoneedhelpoftenturntotheDepartmentof HumanServicesforadviceandforaccesstoMedicaidtopayfortheservices.Manyparentsmentionedthelackof responsebytheDepartmentof HumanSer-vicesasabarriertocare.Parentsreportedcallingtheir local unit to find out about available services andbeingturnedawaywithlittleornoinforma-tion.Repeatedly,parentssharedinformationduringavisitandanotherparentwouldreplywith“Iwishsomeonewouldhavetoldmeaboutthisearlier,”or“WhenIaskedaboutthisIwastoldIcouldn’tgetit.”Almosteveryparentmentionedstruggleswithfinding information, locating providers/resources andlackingknowledgeaboutthesupportsavailabletothemandtheirrightsconcerningtheservice.

Parentsalsotalkedabouttheneedforrespitecareorhelpwithcaringfortheirchild.Parentstoldstoriesof notsleepingforseveralnightsbecausetheirchildwouldoftengetupinthemiddleof thenightandpossiblycauseharmtothemselvesorothers.Othersjustneededabreakfromthecon-stant stress of dealing with a difficult child. Parents talkedaboutnotbeingabletogotothegrocerystorebecausetheirchildactedout.Severalparentsrelayedstoriesof beingbannedfromstoresandrestaurantsbecauseof theirchild’sbehavior.Parentsunderthistypeof stressareunabletorespondad-equatelyduringacrisisandarelessabletodealwithdaytodayrecoveryandtreatment.Severalparentstold us they had financial means to pay for a respite provider, but could not find anyone to provide the respiteserviceintheirlocalarea.

One benefit of the listening tour was that parentsconnectedwitheachotherduringthevisitsandnotonlysharedexperiencesbutsharedinformation.Manyvisitsendedwithparentsshar-ingcontactinformationandpromisingtostayintouchwitheachother.Oneparentendedasessionintearsstating“ItissogoodtoknowIamnotallalone.”Whenaskedduringthevisitswhattheycouldusetohelpthemtheyaskedfora1-800num-berforresourceandproviderinformationandforparentsupportgroups.

Sincethebeginningof theFirstLady’sin-volvement,asteadystreamof e-mailshavecometoherwebsiterequestinginformation,askingforhelpwiththeirchild,orjustwantingachancetosharetheirstory.Itisveryclearthatparentsaresearch-ingforasupportnetworkandinformation.Parentsandfamilieswanttobeabletohelpthemselvesbutmostlacktheresourcesandknowledgetonavigatethecurrentsystem.

Severalpotentialsolutionsweregleanedfromtheparentvisitsandtheinformationandinsightstheyprovided.Aspartof thevisitparentsweregiventheopportunitytoprovidesuggestionsthatwouldhelpimprovethesystem.Acompilationof theseideasandsuggestionsalongwithpossiblestrategiesarelistedbelowandhavebeengroupedintothesamecategoriesastheconcernsraisedbyparents.

Suggestions for Improvements in Schools:“Schoolpersonnelneedtoknowmoreaboutchildrenwithmentalillness.”“Iwishtheywouldputseatbeltsonbusesandhavestaff ridethebus.”“If theyjusthadaplacemychildcouldgoandcalmdownitwouldhelp.”

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Parental Suggestions

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Potential StrategiesTraining for Teachers and School Personnel. Thestateshouldreviewprofessionaldevelopmentcurriculumsthathavealreadybeendevelopedandarebeingutilizedinotherstates.Thecurriculumscanbemadeavailabletoteachersaspartof theirprofessionaldevelopmentrequire-ments.Additionally,professionaldevelopmentrequirementsrelatedtodealingwithchildrenwithmentalillnessshouldbeconsidered.Developingandincludingcourseworkconcerningchildrenwithmentalillnessaspartof thehighereducationrequirementsforeducatorswouldbeanotherpos-sibleopportunityforprovidingadditionalsupportforschoolpersonnel. Seat Belts/Monitors on School Buses. Severalparentssuggestedtheuseof seatbeltsorassignedseatsonschoolbusesasawaytohelpcontrolchildrenonschoolbuses.Addingbusmonitorstorideonschoolbusesandhelpmaintaincontrolwasalsosuggested.Whileschoolsnowhavetheabilitytovideotapeactivityonschoolbuses,severalparentsmentionedbeingdeniedtheabilitytoviewthetapeof theirchild’squestionableactivity.Placingamonitoronboardwillprovideimmediateinterventionforstudentswithbadbe-havior.Videosurveillancecanbehelpfulasapuni-tivemeasure,butitdoeslittletohelpdefusevolatilesituationsthatcanariseinaschoolbussetting.

Quiet Rooms. Severalschoolsinthenationutilize“quietroomareas”tohelpchildrencalmdownduringamanicoraggressiveepisode.Theseroomsdonothavetobeextreme,buttheyshouldhavemaximumsafetyfeaturesandbenon-threateningtothechild.Areassuchasthiscouldbeusedtodefuseasitua-tionandkeepachildinschoolratherthansendingthemhome.Suggestions for Improved Supervision of Care:

“Weneedmorechildpsychiatriststohelptreatchildren.”

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“Ineedsomeonetotellmewhatiswrongwithmychild.”“Weneedtocatchtheseproblemssooner.”“Mychild’sdoctorandthetherapistneedtoworktogethersoeveryonewillknowwhatisgoingon.”

Potential StrategiesDevelop Policies to Increase the Number of Child Psychia-trists in Arkansas. Arkansasmustdeveloppoliciestorecruitandencouragechildpsychiatriststolocateinthestate.Traditionalstrategiesincludeloanforgivenessandincentivesforresidenciesandotherreimburse-mentincentives.Thestateshouldexaminethesemethodsaswellasthepossibilitiesof takingadvan-tageof technologiesliketele-medicinetoprovideopportunitiesforphysicianstoconsultwithexperi-encedmentalhealthprofessionals.

Training for Pediatricians and Family Physicians Concerning Mental Illnesses. PhysiciansarealwaysseekingContinuingEd-ucationUnits(CEUs)tomaintaintheirlicensure.Aseriesof CEUscouldbedevelopedaroundchildrenwithmentalillnessthatcouldhelppediatriciansand

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familyphysicianslearnmoreaboutdiagnosingandtreatingchildrenwithmentalillness.Additionally,courseworkcouldbeaddedtophysiciangraduationrequirementstogivepediatriciansandfamilyprac-ticephysiciansabasicunderstandingof children’smentalhealth.

Improved Screening Methods for Child Care Providers, Schools, and Physicians Can be Used to Identify Problems Sooner. Withhalf of thechildreninArkansasreceiv-inghealthinsurancecoveragethroughMedicaid,theEPSDTprogramcouldbeusedasameanstoim-provescreeningchildrenformentalillness.EffortstoimprovescreeninginthePre-Kpopulationarealreadyunderway.Expertsinthestateareconduct-ingareviewtodevelopanapprovedlistof toolsforproviderstouse.Thiseffortshouldbeexpandedintoschoolbasedeffortstoprovidescreeningforschoolagechildren.

Electronic Medical Records for Children with Severe Emo-tional Disturbances Can Help Physicians and Providers Better Manage a Child’s Care. SeveraleffortshavebeenlaunchedinAr-kansastotestthefeasibilityof electronicmedicalre-cords.Childrenwithseriousemotionaldisturbancesbeingservedbymultiplesystemswouldbeanaturalsubsettoutilizeasapilotgroupforelectronicmedi-calrecords. Suggestions for Improving Family Support:

“Iwantsomeonetocallthatwillhelpanswersmyquestions.”“Ineedsomeonetogivemeabreak,butIcan’tafforditandIdon’thaveanyonetocall.”“WhenmychildhasanepisodeIneedsome-onetohelpmerightthen.”

Potential Strategies Develop a Family Support Network that Includes a Web-Based Resource Directory, Parent Training, and Support Group Development.

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Onemodel,KeysforNetworking,utilizedinKansas,isrecommendedasapossiblesolutionforArkansas.Thismodelnotonlyprovidesinforma-tiontoparents,butseekstodeveloptheparent’sadvocacy skills so they may become self-sufficient andengagedinhelpingotherparentswithchildrenwithmentalillness.Provide Respite Care and Crisis Intervention Services. Havingachildwithamentalillnessisverystressfulandoftenresultsinaparentorcaregiverbeingavailable24hoursaday7daysaweek.Pro-vidingrespitecareandcrisisinterventionwillsup-portfamiliesintheirday-to-daylifeandwillhelpthemavoidsituationsthatmayescalateintoacrisisdue to fatigue and stress. There are two specific challengeswiththistypeof intervention.Oneisfundingtoincreaseaccesstorespiteandcrisisinterventionservices.Itisalwayschallengingtofind ways to fund respite as it does not fit into the Medicaidmodelasaclinicalservice.Itmayrequireutilizingstategeneralrevenuesforfunding.Thereisthepossibilityof fundingcrisisinterventionservicesthroughMedicaidandthisshouldbeanalyzedfur-ther.Thesecondbarriertoprovidingtheseservicesisthelackof availableproviders.Thereisnoreg-istry of respite providers and they are very difficult to find on your own. The same holds true for crisis intervention.Thereareveryfewprovidersthatpro-videthistypeof care.However,mostexpertsfeelthatproviderswillstepuptotheplateif fundingismadeavailablefortheseservices.

The Department of Human Services Should Develop Strate-gies to Improve Local Unit Responses to Parent Needs and Questions. Thismayincludecustomerservicetraining,availability of local resource directories, identifica-tionandtrainingof personnelwithinthelocalunitto serve as experts on specific areas.

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Conclusion

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Itisveryclearfromvisitingwithparentsthatthecurrentsystemisinadequatetomeettheneedsof childrenwithseriousmentalhealthis-sues.Familiesareveryfrustratedandoftenfeelabandonedandmisguided.If thepurposeof thesystemistotreatchildrenwithmentalillnessandpreparethemtobecomeaproductivemem-berof society,thenwemustdevelopasystemthatinvolves,treatsandrehabilitatestheentirefamily.Continuingthecycleof removal,treat-ment,andreinstatementinthesystemwillnotprovidehealingforthefamilyorthechild.

Theinputwereceivedfromfamiliescanhelpguidethetransformationof thecurrentsystemandwillprovidethenewlyes-tablishedChildren’sBehavioralHealthCareCom-missionwithabeginninglistof solutionsthatfamilieswillembrace.Whileotherstrategieswillbenecessaryforacompletetransformation,itisvitalthatwedealwiththeissuesraisedbyfami-liesandprovidethemwithresourcesandsup-porttomeetthementalhealthneedsof theirchildren.

A very special thanks goes to the follow people who worked on the First Lady Listening Tour Team. The information gathered from families, which was compiled in this report, would not have been possible without their dedication and expertise.

First Lady Ginger Beebe and staff, Michaela Hill, Candace Martin, and the Arkansas State Police

Parent Facilitators: Pam Marshall and Georgia Rucker-Key, Arkansas Federation of Families for Children’s Mental Health Joyce Soularie, the Arkansas Mental Health Planning and Advisory Council

Parent Recorder: Missa Hollis-Hatfield, NAMI Arkansas

Youth Advisor: Ayla Soularie

Coordinator and Report Compiler: Rhonda Sanders, Arkansas Advocates for Children & Families

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Torequestadditionalcopiesof thisreport,pleasecontactArkansasAdvocatesforChildrenandFamiliesat501-371-9678,

oryoucandownloadacopyatthefollowingwebsites:

www.arsoc.orgorwww.aradvocates.org