pace (pilot assessment and capacity evaluation)

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PILOT ASSESSMENT AND

CAPACITY EVALUATION

Reprt t the Caliria HealthCare Fdati

October 2010

Childrens Hospice and Palliative Care Coalition


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P I LOT ASSESSME NT AND CAPACITY EVALUAT ION

ABOUT THE PILOT ASSESSMENT AND CAPACITY EVALUATION (PACE)

Childres Hspice ad Palliatie Care Caliti........................2

Ackwledgemets ..........................................................................2

The Caliria HealthCare Fdati .............................. ............2

EXECUTIVE SUMMARY

Backgrd .........................................................................................3

Prject Scpe ......................................................................................3

Gegraphic Csideratis .............................................................4

CCS Ccetrati i Pilt Cties ........................... ..................4

Ke Fidigs ................................ ................................ .......................5

Redcti Hspitalizatis .........................................................7

PILOT SITE METRICS

Ct Leel ................................ ................................ .......................9

Prider Leel .....................................................................................9

Risk-Sharig Parterships ..............................................................9

DATA REPORTING

Glbal Statistics ...............................................................................11

Ct Sapshts ...........................................................................12

MEDI-CAL BENEFIT HEROES

Castal Kids Hme Care ................................ ............................... 25

Pridece TriitCare Hspice .............................. .................... 27

Sa Dieg Hspice ................................ ................................ ......... 29

SUMMARY CONCLUSIONS

Recmmedatis ........................... ................................ ................31

Isses r Frther Eplrati.................................. .................... 32

METHODOLOGY

Samplig Methd ............................. ................................ .............. 33

Sre Deelpmet ............................ ................................ ......... 33

APPENDICES

Appedi 1: Sre Sample ................................ ........................ 34

Appedi 2: Defitis ad Acrms ............................. ........ 36

TABLE oF ConTEnTS

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Abt this ReprtThis report represents a major milestone in Childrens Hospice and Palliative Care Coalitions eorts to implement

Caliornias new Medi-Cal Pediatric Palliative Care Benet in the states 13 designated pilot counties. Conducted toll a crucial knowledge vacuum, PACE identies a contingent o home health and hospice programs that continue to

provide pediatric services in their communities despite the crippling recession. PACE also gauges the potential or

additional health care resources to extend their services to children.

Childres Hspice ad Palliatie Care CalitiSince 2001, Childrens Hospice and Palliative Care Coalition (CHPCC) has been advocating on behal o vulnerable

populations at the state and local level. In pursuit o its core missionto tackle the health disparity in end-o-lie

care or childrenit exemplies the belie that coalitions are the necessary vehicle or achieving health care reorm.

As a coalition, CHPCC brings together a diverse base o stakeholders, including parents, health care providers,

policymakers, and social advocates, to rectiy moral lapses in the existing health care system. The agency leverages

the strengths oered by its collaborative ramework to pursue and implement cost-eective strategies that ensure ahigher quality o care or children suering rom lie-threatening conditions and their amilies.

Through its work, CHPCC, in collaboration with Caliornia Childrens Services (CCS), has spearheaded the devel-

opment o pilot programs that are impacting communities throughout Caliornia and that potentially serve as a

national model or recent ederal health care reorm both in terms o delivery and payment systems.

In the Patient Protection and Aordable Care Act o 2009, there is a provision that children who are enrolled in

either Medicaid or CHIP be allowed to receive hospice and palliative care services without oregoing curative treat-

ment related to a terminal illness. This new ederal policy has state Medicaid programs across the country strug-

gling to dene services and ormulate interim guidelines or implementation. The eligible prognostic requirements

administered under this provision are more restrictive than those detailed in Caliornias new law. However, the

concept o concurrent care is refected in both policies and Caliornias pilot programs are poised to exempliy an

actionable model o health care reorm.

AckwledgemetsChildrens Hospice and Palliative Care Coalition would like to extend their deepest appreciation to the Department o

Health Care Services and Caliornia Childrens Services or their continued partnership, and to all o the providers who

participated in PACE. The agency also would like to thank the Caliornia Hospice and Palliative Care Association and

the Caliornia Association or Health Services at Home or their support in disseminating the PACE questionnaire to

their memberships. Additionally, CHPCC extends its appreciation to Betty Ferrell, Ph.D., FAAN City o Hope Proessor,

Nursing Research and Education, or her assistance in the development o the PACE survey content; to Trisha Rorabaugh,

Rorabaugh Design Studio, or creation o the electronic survey and database; and Lisa Simonson Maiuro, MSPH, PhD,Researcher, Health Management Associates, or her assistance with PACE evaluation processes.

The Caliria HealthCare FdatiPACE was underwritten in its entirety by the Caliornia HealthCare Foundation. The Caliornia HealthCare Foun-

dation is an independent philanthropy committed to improving healthcare delivery and nancing in Caliornia.

By promoting innovations in care and broader access to inormation, the Foundations goal is to ensure that all

Caliornians get the care they need, when they need it, at a price they can aord.

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BackgrdIn 2008, Caliornias Department o Health Care Services (DHCS), responding to the Nick Snow Act and subse-

quent passage o a ederal pediatric hospice waiver, designated 13 pilot counties across the state as implemen-tation sites or the new Medi-Cal Pediatric Palliative Care Benet. The Benet provides eligible children with

access to an innovative care system that waives hospice eligibility requirements and allows them to pursue

curative and lie-prolonging therapies concurrently with the benets o hospice and palliative care to alleviate

their pain and suering.

The three-year implementation trajectory, which ocially launched in October 2009, assembled a diverse geo-

graphic roster o communities able to oster a new model o community-based palliative care or children living

with chronic, complex, and potentially terminal medical conditions. The rst group o counties, Santa Cruz, Mon-

terey, and San Diego have been enrolling children under the Benet since March o 2010 when DHCS dissemi-

nated guidelines and enrollment materials. Additional counties originally selected or the two-year implementa-

tion queue were: Los Angeles, Orange, Fresno, Santa Clara, San Francisco, Sonoma, Marin, Alameda, Humboldt,

and Sacramento.

All o the counties initially demonstrated the commitment and capacity necessary to meet DHCS standards or

enrollment in the pilot program prior to its launch; yet the states widespread economic plunge, budget decits,

scal considerations such as low reimbursement rates, and lack o pediatric knowledge among providers, have

sorely impacted the initiation and enrollment process.

Administrative concerns at the state and county level, such as the highly restrictive medical eligibility criteria,

subsequent conservative interpretation o those requirements on the part o Caliornia Childrens Services (CCS),

and cumbersome admission documentation also have hindered the programs capacity to serve vulnerable chil-

dren. As one CCS nurse liaison administering the Benet shared, I think the barrier is the medical criteria. For

instance, our cancer kids are perect or this type o program but eligibility requirements say that they have to

have ailed conventional protocols. All kids with cystic brosis would be good candidates because they have adicult lie and a shortened liespan; however, the criteria dictate that they have to be end stage. The list goes

on. I it were up to me, I would add neurological problems like cerebral palsy, anomalies, etcetera, cancer kids

on chemo or ater chemo, and all types o muscular dystrophy and spinal muscular atrophy. I would also re-write

the central nervous system injury category and add an other category to the list.

Prject ScpeThis report examines capacity, trends, and metrics or all 13 o the pilot counties whether currently engaged in

the program or fagged as pending by the state. Statistical tables refect results collected through 486 provider

surveys; the majority o which were completed by home health and hospice agencies. Results provide a new

perspective into the waning pediatric health care community and highlight opportunities to expand provider

pediatric palliative care knowledge.

Personal interviews conducted with active pilot site providers give voice to the institutional values that govern

them along with the culture and leadership that supports them in maintaining service provision despite econom-

ic challenges. Through PACE, CHPCC has identied a baseline o current and potential pediatric providers and

their collaborating partners. The agency also has developed a system or engaging adult-ocused hospice and

home health providers who demonstrate interest in expanding services to children in each o the pilot counties.

ExECuTIvE SuMMARy

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Gegraphic CsideratisDistribution o pilot counties in Southern, Central, and Northern Caliornia represent a diverse ethnic sampling

o the states multi-cultural population. Regions vary considerably in population size; thereore, aggregate datareporting is skewed. The Southern Caliornia Region in particular refected the highest per-capita percentile o

respondents or the study in keeping with the tri-county areas overall census.

In order to represent the penetration in each county accurately, PACE captured the overlapping service areas o

providers. It was anticipated that each unique acility participating in the survey would serve multiple counties.

In addition to population scope, the density o low-income inhabitants also is a actor considered in PACE.

Eligibility or the Benet requires children to be enrolled in the states public insurance program as ull-scope

Medi-Cal.

CCS Ccetrati i Pilt CtiesAccording to 2009 data rom Caliornias Department o Health Care Services, the number o Medi-Cal bene-

ciaries under 21 years o age in the pilot counties totals 2,319,598. Approximately 3% o these users are CCS

children. Prior to the launch o the Benet in 2008, Dr. Marian Dalsey, ormer Chie, Childrens Medical Services

Branch, Caliornia Department o Health Care Services, estimated that 10% o the CCS population statewide were

children aficted with lie-threatening conditions that could benet rom the services oered under the new con-

current care model. O this 10%, more than 7,000 CCS Medi-Cal children reside in the pilot counties. While not

all o these children will be enrolled in the program due to current eligibility requirements and program capacity,

a signicant portion o this population are potential candidates. The majority o these children do not meet the

current hospice eligibility criteria o having likely six months or less to live.

Medi-Cal CCS Service LTC Children InRan Count Population Users Pilot Counties

1 Los Angeles 1,202,220 36,067 3,607

2 Orange 213,034 6,391 640

3 San Diego 204,415 6,132 613

4 Fresno 167,613 5,028 503

5 Sacramento 155,890 4,677 468

6 Santa Clara 114,593 3,438 344

7 Alameda 107,581 3,227 322

8 Montere 46,961 1,409 141

9 San Francisco 39,372 1,181 118

10 Sonoma 27,152 815 82

11 Santa Cruz 20,582 617 62

12 Humboldt 11,593 348 35

13 Marin 8,592 258 26

Table 1:1

1 Overview or Medi-Cal Benefciaries by Demographics, April 2009, Research and Analytical Studies Section, Caliornia Dept o Health Care Services.

2 Assessing the Caliornia Childrens Services Program, August 2009, Caliornia HealthCare Foundation Issue Brie.

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Ke FidigsIn each o the counties surveyed, CHPCC was able to gather important data

regarding the availability and capacity o providers currently oering pediat-ric services, and those serving adult populations that are potentially able and/

or willing to consider expanding their service provision to children. Statistical

data was collected and segmented based upon whether a provider is a licensed

hospice, home health agency, holds dual hospice/home health licensing, or is a

supportive provider o another type that may be able to oer waiver services as

a collaborative partner. Figure 1:1 to the right illustrates the PACE respondent

composition.

There were a total o 1,126 or-prot, and not-or-prot acilities

originally identied or the PACE project. Forty-three percent, or486 total surveys were eectively completed. The remaining

57% were non-responsive or the ollowing reasons:

unabletomakecontactwithinthebrieftimeperiodofthe

study,

outofbusiness,

refusedtoparticipate,

satelliteofceslocatedinothercounties,

contactinformationnotavailable,or

parentcompanyoutsideCalifornia.

Many o the organizations surveyed through PACE extend their

service delivery beyond their county o residence into adjacentterritories. For example, numerous acilities serving Los Angeles

County also provide care in Orange County. Table 1:2 to the let

illustrates the total number o organizations interviewed through PACE that are providing services in each o the

pilot counties.

PACE results arm CHPCCs earlier belie that children suering rom

chronic, serious medical conditions are oten marginalized in the health

care system. Only 21% o providers who responded to the survey are

currently serving the pediatric patients in pilot counties as shown in

gure 1:3.

ExECuTIvE SuMMARy

Other8%

Hospice

15%

Home Health68%

Dual License

9%

21%

Yes

78%

No

1%

Not Sure

Figure 1:1

Figure 1:3

Table 1:2

Do you provide palliative and/orhospice services or children?

What type o provider are you?

TOTAL NUMBER

OF PROVIDERSRANk COUNTy (PACE)

1 Los Angeles 268

2 Orange 141

3 San Diego 51

4 San Francisco 42

5 Santa Clara 37

6 Alameda 34

7 Marin 24

8 Sacramento 20

9 Sonoma 15

10 Humboldt 13

11 Santa Cruz 10

12 Fresno 10

13 Montere 8

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PACE allowed CHPCC to identiy and connect with more than 60 previously unidentied acilities that expressed

substantial interest in augmenting services or children. Research also shed new light on the pulse o pediatric

hospice and palliative care in the state and presented CHPCC with various challenges that must be addressed.

The ollowing key ndings are categorized based on two specic survey tracks: providers who currently are serving

children and those who are not. Results are divided between these two unique provider populations.

Data Profle: Pediatric providers responding armatively to providing hospice and/or palliative care to children:

Only102of486respondents,approximately21%oftheagenciessurveyed,currentlyofferpediatricservices.

Ofthe102agenciesthatservechildren,35%arenon-protand65%arefor-protorganizations.

TheratioofestimatedLTCchildrenservedbyrespondentpediatricprovidersvariesdramaticallyacrossthe

counties as evidenced in Table 1.4 below. With a ratio o 97 children to every palliative and/or hospice care

provider in the county, Los Angeles may be considered underserved; however, it is important to note that non-responders may augment the service capacity o each county listed.

Anoverwhelmingmajority,approximately75%oftheagenciesthatofferpediatricservicesrespondedthatthey

are extremely interested in increasing the number o children they serve.

67%ofpediatricserviceprovidersnotonlyservechildrenwhoarefull-scopeMedi-Calbutindicatethatthese

children comprise a majority o their pediatric patient censusa signicant nding that attests to the impact thatthe new Benet will have in the state.

Datademonstratesaconsistenttrendacrossallprovidertypesastothecultureofcollaboration.Roughly68%

o pediatric agencies do collaborate to provide services to children across a broad spectrum o services.

Servicesmostcommonlyprovidedinclude:registerednursing90%;carecoordination84%;respite80%;24/7

on-call nursing 75%; social work 75%; and, amily education 75%. Opportunity to increase access to services

under the Benet exists in the areas o bereavement, child lie, and expressive therapies which all ranked 40%

or under in terms o current service provision, with the child lie specialty reporting a result o only 13%.

Estimated Number o Number o Ratio o LTC

LTC Children In known Pediatric Children to

Ran Count Pilot Counties Providers Pediatric Providers

1 Los Angeles 3,607 37 97:1

2 Orange 640 22 29:1

3 San Diego 613 20 31:1

4 Fresno 503 14 36:1

5 Sacramento 468 12 39:1

6 Santa Clara 344 5 69:1

7 Alameda 322 7 46:1

8 Montere 141 8 18:19 San Francisco 118 8 15:1

10 Sonoma 82 4 21:1

11 Santa Cruz 62 4 16:1

12 Humboldt 35 2 18:1

13 Marin 26 3 9:1

Table 1:4

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83%ofthesepediatricprovidersstatedthattheyhaveatleastonenurseonstaffwiththreeyearsormore

pediatric experience and 51% have a minimum o one social worker on sta with three years or more pediat-

ric experience. It is relevant to note that a qualied applicant or the role o care coordinator under the Benet

requires this minimum level o pediatric expertise in either discipline.

Data Profle: Pediatric Providers responding negatively to providing hospice and/or palliative care to children:

79%oftheorganizationssurveyed379intotaldonotofferservicestochildren.Ofthisnumber,75%respond-

ed that they were not interested in or were neutral about expanding services to include pediatric populations in

their respective communities.

25%oftheorganizationssurveyed93intotalindicatedthattheyareinterestedinexpandingservicesto

children. O those, 90% are or-prot organizations.

71%ofrespondentscitedstaffeducationasaprerequisitetoexpandingtheirpediatricservicedelivery.

Pediatricprotocolsandtheneedforpediatricmedicalconsultantswerecitedwithahighdegreeoffrequency

(>65%) as necessary considerations or providers who are interested in expanding services to children.

TheSouthernCaliforniaregionindicatesanevenhigherneedforpediatriceducation,protocolsandconsultation

(>75%) across the largest geographic group o providers surveyed.

Higherlevelsofreimbursementandsupportbyanagencysboardofdirectorsand/oradministrationwerecited

by a majority o respondents, suggesting that, at minimum, budget neutrality would be required to expand ser-

vices to children.

Redcti HspitalizatisThe reduction o ER visits, lengthy hospital stays, ambulatory transport and other expensive crisis-driven therapies

has proven a key outcome or amilies enrolled in the Medi-Cal Benet. Evidentiary results are demonstrated in a

random sampling o case studies acquired rom the Santa Cruz/Monterey County pilot site.

CASE STUDY 1 Nineteen-year-old neurologically devastated male. He lives with a Ventriculoperitoneal (VP)

shunt in the brain and is non-communicative. He has a history o respiratory inections. A DNR is in place. Since

enrollment in the Benet, Coastal Kids has received two calls relative to the patient suering rom bouts with ever

and rapid breathing. Coastal Kids was able to mitigate the rst contact through collaboration with the patients

primary care physician. An appointment was made with a local clinic and the patient was immediately started on

intravenous antibiotics. In the second instance, the primary care physician on call was not amiliar with the patient.Coastal Kids contacted the emergency room at the local hospital. ER sta requested that the patient be admitted or

a chest x-ray. Once there, he was also started on antibiotics and then sent home.

The patients mothers requested that Coastal Kids do whatever possible to ensure that he is able to remain saely

at home where he is happier. She also commented that hospitalizations are very dicult or him and on the am-

ily, particularly his two siblings. Since becoming a participant in the Benet program in March o 2010, the patient

ExECuTIvE SuMMARy

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has been to the ER (at the physicians request) only once and has not been admitted to the hospital. In the year

prior to his enrollment, he was taken to the ER on our occasions and was admitted into the hospital on three.

CASE STUDY 2 Six-year-old emale on ventilator support with a tracheotomy. She is non-communicative. Dur-ing a routine visit, the Coastal Kids nurse and the patients mother discussed the possibility that the patient might be

suering rom a urinary tract inection. Coastal Kids reported this suspected condition to the patients primary care

physician, who requested that Coastal Kids sta perorm a sterilized catherization, and analyze fuid secretions. The

test result was positive and conclusive. On the physicians order, the patient was started on a course o oral antibiot-

ics. She was monitored throughout the 10-day treatment to ensure that the medication was eective. The patient has

a history o lengthy hospitalizations resulting rom undetected urinary tract inections that spread to her kidneys.

CASE STUDY 3 Seventeen-year-old neurologically devastated emale. History o skin breakdowns resulting

in large bedsores (decubitus pressure ulcers) particularly around her g-tube. She is also susceptible to respiratory

inections. Since enrolled in the program, the patient has not had any major skin breakdowns; the weekly nursing

visits have enabled sta to spot the symptoms o a pressure ulcer early on, enabling them to administer preventive

care and provide immediate treatment to alleviate urther systemic trauma. On one visit, the patient demonstratedsigns o a respiratory inection. Coastal Kids arranged or a same-day clinic appointment, where she was diagnosed

and started on a course o oral antibiotics. Coastal Kids monitored her during the 10-day prescribed treatment. The

treatment was eective. Since enrolling onto the program in June o 2010, the patient has not been admitted to the

ER or hospital. In the year prior to her enrollment, she was taken to the ER our times and was admitted into the

hospital on three occasions.

CASE STUDY 4 Sixteen-year-old male amputee suering rom osteosarcoma. The loss o his leg was a result o

his disease process. He is still undergoing aggressive treatment intended to arrest the spread o his cancer. The

patients amily is indigent and has very little in the way o undamental resources. His ather is unemployed and

there are two additional siblings in the home. Coastal Kids care coordinator is working with the amily to establish

links to community providers such as ood banks, social service organizations, and others that can alleviate some o

the burden o care and provide practical support, as well as provide or the amilys survival. The care coordinator

also is working on acquiring a Section 8 housing designation or the amily so that they can move into a single-

level home; thus enabling the patient greater mobility and independence.

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Pilt Site MetricsThe design phase or the Medi-Cal Pediatric Palliative Care Benet yielded a unctional pilot site blueprint which

included: an independent local CCS county oce, a community-based hospice or home health agency(s) withpediatric expertise, and a reerring childrens specialty hospital(s). During the planning stages prior to implementa-

tion, all o the counties under consideration demonstrated the leadership, preparedness, and capacity necessary or

participation in the program. They met the ollowing criteria:

County Level

CCS county oce interested in participating in the program and able to ulll operational requirements includ-

ing: 1) securing a ull time CCS nurse liaison, a position responsible or screening and identiying prospective

children, interpreting eligibility criteria, and enrolling children onto the Benet; 2) understanding o the practical

and scal benets o concurrent palliative care; and, 3) willingness to administrate the program at the county

level while maintaining cost neutrality, a state and ederal requirement. The CCS nurse liaison position is under-

written by a ederal/state nancial matching program and requires no county contribution at this time.

Provider Level

A Medi-Cal certied, licensed hospice and/or home health provider willing to submit an application to DHCS

requesting authorization to provide services under the new Benet and have a proven ability and the capacity

to provide pediatric care once approved.

Unortunately, economic woes caused more than 50% o the early players to withdraw their bid or inclusion.

Many were orced to reduce pediatric services dramatically or in some cases, close their doors or good. This

unding turmoil let a ormidable void in local communities and posed a threat to the success o the pilot proj-

ects. Signicantly, Humboldt and Sacramento counties temporarily declined participation in the program citing

operational and nancial barriers.

Risk-Sharig PartershipsTo mediate this challenge, CHPCC began seeking risk-sharing partnerships among the county health care com-

munitiesreplacing withdrawal and ailure with collaborative opportunity. Early attempts at organizing make-

shit pilot sites were met armatively. Monterey County was the rst to ormalize a multi-agency collaboration

designed to bundle pediatric services as part o the pilot program. Three unique non-prot organizations joined

together to cover the gamut o Benet services, as well as to oer additional community-based support to needy

amilies.

They are:

CoastalKidsHomeCare,theonlypediatrichomehealthagencyontheCentralCoast;

JacobsHeartChildrensCancerSupportServices,anorganizationthatprovidespsychosocialandpracticalsup-port to children with cancer and their amilies; and,

CHPCCsPartnershipforChildren(PFC),whichsimilarlyofferstheseservicestochildrenwithcomplexmedi-

cal conditions other than cancer. PFC also operates a ree transportation service that coordinates and pro-

vides rail children and their parents with sae, reliable rides to medical appointments at childrens hospitals

in the Bay Area.

PILoT SITE METRICS

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Figure 2:1 below depicts the service-sharing model.

With the notion o multiplying the successul outcomes o the multi-agency risk-sharing partnership developed

or Central Coast children, CHPCC has identied a myriad o providers rom throughout the pilot counties who

demonstrate a culture o collaboration and who have responded optimistically with regard to expanding services

to children. They have stated their interest and oered rationale or what it will take to secure their involvement.

Approaching these tentative stakeholders will be a unctional activity o CHPCCs educational strategies moving

orward.

Figure 2:1

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Glbal Statistics

HOME HEALTH HOSPICE DUAL LICENSE OTHER

0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

NO YES NOT SURE

0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

FOR PROFIT AGENCIES NON PROFIT AGENCIES

0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Home Health 329 67.7%

Hospice 76 15.6%

Dual License 42 8.6%

Other 39 8.0%

Total Responses 486 100.0%

yes 102 21.0%

No 379 78.0%

Not Sure 5 1.0%Total Responses 486 100.0%

Do you provide palliative and/or hospice services or children?


Are you a or-proft or a non-proft agency?

DATA REPoRTInG

Home DualHealth Hospice License Other Total

Non Proft Agencies 34 20 12 20 86 17.7%

For Proft Agencies 295 56 30 19 400 82.3%

Total Responses 329 76 42 39 486 100%

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Ct Sapsht: Ls Ageles

HOME

HEALTH

HOSPICE OTHERDUAL

LICENSE

0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%


Hospice 33 12.3%


Other 8 3.0%


YES NO NOT SURE0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

HOME

HEALTH

HOSPICE OTHERDUAL

LICENSE

Home Health Hospice Dual License Other Totalyes 21 7 5 5 38 14.2%

No 191 25 `0 3 229 85.4%

Not Sure 0 1 0 0 1 0.4%

Total Responses 212 33 15 8 268 100%

registered nursing ...................................................... 81.6%

care coordination ....................................................... 84.2%

amil counseling ....................................................... 60.5%

bereavement/anticipator grie support ..................... 36.7%

art therap ................................................................. 15.8%

pla therap ............................................................... 26.3%

respite ........................................................................ 76.3%

massage therap ....................................................... 31.6%

amil education ......................................................... 76.3%

24/7 on-call nursing support ...................................... 73.7%

chaplainc.................................................................. 31.6%

child lie specialists .................................................... 13.2%

social wor ................................................................. 76.3%

other .......................................................................... 44.7%



Provider composition o Yesresponders.

Which o the ollowing pediatric services does your agency provide?

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Ct Sapsht: orage Ct

HOME

HEALTH

HOSPICE OTHERDUAL

LICENSE

0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%


Hospice 32 22.7%

Dual License 8 5.7%

Other 3 2.1%


0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

HOME

HEALTH

HOSPICE OTHERDUAL

LICENSE


No 85 26 7 0 118 83.7%

Not Sure 0 0 0 0 0 0%

Total Responses 98 32 8 3 141 100%

registered nursing ......................................................... 87%


amil counseling ....................................................... 60.9%


art therap ................................................................. 21.7%

pla therap ............................................................... 39.1%

respite ........................................................................ 82.6%

massage therap ....................................................... 26.1%

amil education......................................................... 82.6%


chaplainc.................................................................. 39.1%


social wor ................................................................. 82.6%

other .......................................................................... 43.5%





DATA REPoRTInG

13

YES NO NOT SURE0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%


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Ct Sapsht: Sa Dieg

HOME

HEALTH

HOSPICE OTHERDUAL

LICENSE

0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%


Hospice 14 27.5%


Other 4 7.8%


YES NO NOT SURE0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

HOME

HEALTH

HOSPICE OTHERDUAL

LICENSE


No 16 10 3 2 31 60.8%

Not Sure 0 0 0 0 0 0.0%




amil counseling ....................................................... 45.0%


art therap ................................................................. 25.0%

pla therap ............................................................... 30.0%

respite ........................................................................ 80.0%

massage therap ....................................................... 20.0%

amil education ......................................................... 75.0%


chaplainc.................................................................. 30.0%


social wor ................................................................. 75.0%

other .......................................................................... 35.0%





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Ct Sapsht: Sata Crz

HOME

HEALTH

HOSPICE OTHERDUAL

LICENSE

0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Home Health 7 70.0%

Hospice 2 20.0%


Other 0 0.0%


YES NO NOT SURE0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

HOME

HEALTH

HOSPICE OTHERDUAL

LICENSE


No 4 1 1 0 6 60.0%

Not Sure 0 0 0 0 0 0.0%




amil counseling ....................................................... 50.0%


art therap ................................................................. 25.0%

pla therap ............................................................... 25.0%

respite ........................................................................ 50.0%

massage therap ....................................................... 50.0%

amil education......................................................... 75.0%


chaplainc.................................................................. 50.0%

child lie specialists ...................................................... 0.0%

social wor ................................................................. 75.0%

other ........................................................................ 100.0%





DATA REPoRTInG

15


17/38


Ct Sapsht: Mtere

HOME

HEALTH

HOSPICE OTHERDUAL

LICENSE

0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Home Health 6 75.0%

Hospice 1 12.5%


Other 0 0.0%


YES NO NOT SURE0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

HOME

HEALTH

HOSPICE OTHERDUAL

LICENSE


No 3 1 1 0 5 62.5%

Not Sure 0 0 0 0 0 0.0%




amil counseling ....................................................... 33.3%


art therap ................................................................. 33.3%

pla therap ............................................................... 33.3%

respite ........................................................................ 33.3%

massage therap ....................................................... 33.3%

amil education ......................................................... 66.7%


chaplainc.................................................................. 33.3%


social wor ................................................................. 67.7%

other ........................................................................ 100.0%





16


18/38


Ct Sapsht: Sata Clara

HOME

HEALTH

HOSPICE OTHERDUAL

LICENSE

0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%


Hospice 3 8.1%


Other 11 29.7%


YES NO NOT SURE0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

HOME

HEALTH

HOSPICE OTHERDUAL

LICENSE


No 15 0 3 7 25 67.6%

Not Sure 0 0 0 0 0 0.0%




amil counseling ....................................................... 50.0%


art therap ................................................................. 41.7%

pla therap ............................................................... 41.7%

respite ........................................................................ 41.7%

massage therap ....................................................... 25.0%

amil education......................................................... 58.3%


chaplainc.................................................................. 50.0%


social wor ................................................................. 58.3%

other .......................................................................... 58.3%





DATA REPoRTInG

17


19/38


Ct Sapsht: Fres

HOME

HEALTH

HOSPICE OTHERDUAL

LICENSE

0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Home Health 8 80.0%

Hospice 2 20.0%

Dual License 0 0.0%

Other 0 0.0%


YES NO NOT SURE0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

HOME

HEALTH

HOSPICE OTHERDUAL

LICENSE


No 7 1 0 0 8 80.0%

Not Sure 0 0 0 0 0 0.0%


registered nursing .................................................... 100.0%

care coordination ..................................................... 100.0%

amil counseling ....................................................... 50.0%


art therap ................................................................... 0.0%

pla therap ................................................................. 0.0%

respite ........................................................................ 50.0%

massage therap ....................................................... 50.0%

amil education ....................................................... 100.0%

24/7 on-call nursing support .................................... 100.0%

chaplainc.................................................................. 50.0%


social wor ............................................................... 100.0%

other .......................................................................... 50.0%





18


20/38


Ct Sapsht: Sa Frascisc

HOME

HEALTH

HOSPICE OTHERDUAL

LICENSE

0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%


Hospice 3 7.1%


Other 14 33.3%


YES NO NOT SURE0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

HOME

HEALTH

HOSPICE OTHERDUAL

LICENSE


No 13 0 5 9 27 64.3%

Not Sure 0 0 1 0 1 2.4%




amil counseling ....................................................... 57.1%


art therap ................................................................. 50.0%

pla therap ............................................................... 50.0%

respite ........................................................................ 42.9%

massage therap ....................................................... 35.7%

amil education......................................................... 64.3%


chaplainc.................................................................. 50.0%


social wor ................................................................. 64.3%

other .......................................................................... 35.7%





DATA REPoRTInG

19


21/38


Ct Sapsht: Sma

HOME

HEALTH

HOSPICE OTHERDUAL

LICENSE

0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Home Health 9 60.0%

Hospice 3 20.0%

Dual License 0 0.0%

Other 3 20.0%


YES NO NOT SURE0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

HOME

HEALTH

HOSPICE OTHERDUAL

LICENSE


No 5 1 0 1 7 46.7%

Not Sure 0 0 0 0 0 0.0%




amil counseling ....................................................... 87.5%


art therap ................................................................. 50.0%

pla therap ............................................................... 62.5%

respite ........................................................................ 62.5%

massage therap ....................................................... 25.0%

amil education ....................................................... 100.0%


chaplainc.................................................................. 50.0%


social wor ............................................................... 100.0%

other .......................................................................... 25.0%





20


22/38


Ct Sapsht: Mari

HOME

HEALTH

HOSPICE OTHERDUAL

LICENSE

0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Home Health 9 37.5%

Hospice 3 12.5%


Other 8 33.3%


YES NO NOT SURE0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

HOME

HEALTH

HOSPICE OTHERDUAL

LICENSE


No 6 1 4 6 17 70.8%

Not Sure 0 0 0 0 0 00%




amil counseling ....................................................... 85.7%


art therap ................................................................. 57.1%

pla therap ............................................................... 71.4%

respite ........................................................................ 57.1%

massage therap ....................................................... 28.6%

amil education......................................................... 85.7%


chaplainc.................................................................. 57.1%


social wor ................................................................. 85.7%

other .......................................................................... 28.6%





DATA REPoRTInG

21


23/38


Ct Sapsht: Alameda

HOME

HEALTH

HOSPICE OTHERDUAL

LICENSE

0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%


Hospice 5 14.7%


Other 5 14.7%


YES NO NOT SURE0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

HOME

HEALTH

HOSPICE OTHERDUAL

LICENSE


No 15 3 4 5 27 79.4%

Not Sure 0 1 1 0 2 5.9%




amil counseling ......................................................... 0.0%


art therap ................................................................... 0.0%

pla therap ................................................................. 0.0%

respite ........................................................................ 20.0%

massage therap ....................................................... 20.0%

amil education ......................................................... 60.0%


chaplainc.................................................................. 20.0%


social wor ................................................................. 60.0%

other .......................................................................... 40.0%





22


24/38


Ct Sapsht: Hmbldt

HOME

HEALTH

HOSPICE OTHERDUAL

LICENSE

0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Home Health 4 30.8%

Hospice 1 7.7%

Dual License 1 7.7%

Other 7 53.8%


YES NO NOT SURE0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

HOME

HEALTH

HOSPICE OTHERDUAL

LICENSE


No 1 0 0 7 8 61.5%

Not Sure 0 0 1 0 1 7.7%




amil counseling ....................................................... 50.0%


art therap ................................................................. 25.0%

pla therap ............................................................... 25.0%

respite ........................................................................ 25.0%

massage therap ....................................................... 25.0%

amil education......................................................... 75.0%


chaplainc.................................................................. 50.0%


social wor ................................................................. 75.0%

other ............................................................................ 0.0%





DATA REPoRTInG

23


25/38


Ct Sapsht: Sacramet

HOME

HEALTH

HOSPICE OTHERDUAL

LICENSE

0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%


Hospice 2 10.0%


Other 0 0.0%


YES NO NOT SURE0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

0

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

HOME

HEALTH

HOSPICE OTHERDUAL

LICENSE


No 6 2 3 0 11 55.0%

Not Sure 0 0 1 0 1 5.0%




amil counseling ....................................................... 50.0%


art therap ................................................................. 12.5%

pla therap ............................................................... 12.5%

respite ........................................................................ 37.5%

massage therap ....................................................... 25.0%

amil education ......................................................... 87.5%


chaplainc.................................................................. 37.5%


social wor ................................................................. 87.5%

other .......................................................................... 37.5%





24


26/38


27/38


we are denitely keeping a lot o kids out o the emergency room, the ICU, and just out o the hospital in general.

Thats really what this is about. Saving dollars and providing care that is much more appropriate, timely, and less

stress on the children and their parents.

What was your organizations impetus or joining the Medi-Cal Beneft program?

I dont believe that most people even know that there is no hospice agency in Monterey County willing or able to

care or children. This is a real problem. Once you care or a terminal child, you realize the lack o services that are

available or a pediatric patient versus an adult patient. The act that children dont t into the adult hospice model

doesnt mean they should be let out. Its just so wrong. In this day and age, it just shouldnt be happeningchil-

dren should not be excluded. There needs to be something else or them. An ICU death is not what we want or our

children. Ive seen the ripple eect o that experience on amilies and its brutal. From day one, it was my goal to

be a pilot site, because I believe we have a moral and ethical obligation to change this.

Is it working?

I love what is happening with the Medi-Cal Benet here on the Central Coast. We are now providing services like painand symptom management and expressive therapies. Our partners are willing to do this work because they also agree

that this is treatment our children need. Its just the right way to take care o a child with a serious illness.

We have ound collaborating partners in this community who I never thought we could nd to support amilies. And

then to watch and hear about the response o the amilies receiving these services, o having a care coordinator,

and having nurses come to them on a regular basisthey are just blown away.

My disappointment is that we are not able to enroll all o our children in the Benet right now. We are having some

challenges with the state relative to understanding diagnosis. Weve had ve kids die since we became a unc-

tioning pilot site and not one o them has been approved or the Benet. The enrollment criteria are much too strict.

However, the amilies we have been able to help are overwhelmingly appreciative. They have children who havebeen living with devastating neurological conditions or a long time. The kids are older, 15, 18 years o age, and

their parents have been their sole caretakers. They are completely amazed by the dierence that consistent support

is making. That is the beauty and the tragedy o ittheyve had to go without or so long.

What would you say to a provider who is considering joining the program?

There is a calling to take care o an adult and there is a calling to take care o a child. I truly believe that. I think you can

take care o a lot o children with one or two pediatric nurses. You dont have to have pediatric supervisors or medical

directors. Pediatric nurses know how to take care o childrenthats what theyve devoted their lives to. Just like the

program at St. Josephs Hospital in Marin County, they have one part-time supervisor and one nurse and they take care o

a lot o kids. In home care, you can see a lot o children with one, maybe two nurses. Its not great, but its a start. I think

that people need to get brave and add a pediatric nurse onto their sta, even i the position is part-time to begin with.

The reality o what it takes to do a pediatric visit also needs to be taken under consideration. Our visits are longer because

we are dealing with the entire amily unit, and the distractions o multi-sibling households. The majority o our patients are

low-income, Medi-Cal amilies. We spend a lot o time educating and resource nding or our amilies. Plus, in rural loca-

tions, theres a great deal more travel time. I you go into it with your eyes open, the challenges can be managed.

I really appreciate the adult programs that are considering participation in the Benet. Marin County, or one. They

have a philosophy that says they need to take care o all the people in their community. It doesnt matter i they

are young or old. As an organization, they are stepping up and saying, What can we do? Its scary to do that. But

their leadership understands this isnt a way to make money. It is about serving people.

26


28/38


TERRI WARREN, MSWExecutive Director

Providence TrinityCare

Hospice, Torrance, CA

Is there an underlying rationale that

drives your organizations philoso-

phy o care?

As a mission-based not-or-prot hospice

provider, we are ully committed to provid-

ing the highest quality end-o-lie care to all in our community who need it and choose it. It would actually go

against our philosophy in a very material way to not provide care to children. Our opportunity has been to try

to gure out a way to operationalize and und the availability and access to that care, but our philosophy as an

organization is inclusive o all in our community.

How do you manage the fscal challenges o caring or children?

We careully manage revenue and expenses across all o our service and ensure children receive the right care

at the right time. We put a lot o eort into philanthropy and raising unds specically or pediatrics. We apply

that same commitment to managing those dollars really careully. This is critically important because they go

very, very quickly. And they go much more easily than they come in.

We need to engage our community in understanding what the needs o these children are. Our job is to tell

the story about why our pediatric program is important, whom our service touches, and how they benet rom

it. We have an obligation to work with the health care unders and commercial payers, and to continue to

advocate or nancial resources.

How does the Beneft impact this challenge?

Administratively we are working to dene the break even point, where the number o children we have on

service, and the eciencies we are able to put into place through our service delivery, will signicantly mini-

mize the unding gap. We dont have that ormula yet, but I do believe it exists.

How has caring or children made a dierence in your lie and work?

I have absolutely been touched in the past, and currently am, by patients and their amilies who are on our

service at any given time. What they are aced with and living through are truly circumstances that I as a

parent nd hard to even imagine.

I am personally very passionate about services or children, particularly or children that are seriously ill. And

I am committed to making sure that we as an organization provide that service in a really meaningul way.

Having the appropriate sta in place is key. The skill set o the clinicians involved with caring or children and

their amilies is really one that is more specic than even the best adult hospice clinicians would provide.

Psychosocially, I believe that a highly competent social worker can bridge the needs o adult and pediatric

patients well, but their level o experience and comort with children really determines i they can be eective

at their job.

MEDI-CAL BEnEFIT HERoES

Organizational mission:

We compassionately enter the lives of individuals

faced with the realities of suffering, loss, death and

grief, to offer expert care and education, while re-

specting each persons choices, values and beliefs.

27


29/38


On the medical side, there is a very clear distinction. Putting an IV into a neonate is dramatically dierent

than doing the same procedure with a 75-year-old. Medical interventions vary dramatically, and dosing or

pain and symptom management is extremely dierent in a sizeable percentage o the children who come onto

our service.

From a physicians specialty, pediatrics stands out as well. I Im having a heart issue, Im going to go to a car-

diologist. Im not going to go to an oncologist, even though we also consider them a doctor. Pediatric palliative

care and hospice all into that same category. On the nursing end, the gap is a little wider. Not every adult

nurse has handled a brain shunt beore. There are lots o interventions in pediatric palliative care that dont

translate into the adult population on a regular basis, i ever.


Joining the program was an easier decision or TrinityKids Care than or some other organizations because we

already had a airly well established pediatric hospice program. Our clinical team was in place and unction-

ing very eectively. Right rom the beginning, our clinicians were very enthusiastic about broadening the

scope o our service provision. Organizationally and nancially, we went into this with our eyes wide open.

At the same time, we did our due diligence and evaluated what unding we could expect as a result o the

Benet and how much o a cash cushion we would need in order to bring children onto our service through

this program.

Is it working?

One very positive aspect o the waiver is that all o the organizations involved believe that the program has

true value or the amilies. Providers are getting very creative and partnering to make it work. We at Trinity

are ortunate to have the support o San Diego Hospice. They started their service delivery in the rst year

and theyve been really wonderul about candidly sharing their experience with us since our organization is

slotted or year two. Weve also mutually beneted rom dialoguing specic pediatric issues. They ask, I this

were you, what would you do? Its a positive exchange on both ends. The collaborative development o thisprogram is very rereshing to see. It doesnt happen much anymore.

What would you say to a provider who is considering joining the program?

First and oremost, think through the kind o organizational commitment you are making. Because i your

organizations primary motivation is to bring cash in the door very quickly, your service isnt going to do well

in the long run. But i you think you really want to get into pediatric palliative care and are going to commit to

developing the skills to do it, the more you collaborate with programs already providing this care, the quicker

you will be able to get up and get running eectively.

Honestly, it comes down to one critical success actoryou need at least one person in your organization that

is going to be committed, who is going to be the cheerleader and the center o building the program.

28


30/38


JAN WYSS, RN, Program ManagerSan Diego Hospice and

The Institute for Palliative

Medicine, San Diego, CA

Is there an underlying rationale that

drives your organizations philosophy

o care?

Our mission, To prevent and relieve suering

and promote quality o lie, at every stage o lie, through patient and amily care, education, research and advo-

cacy,refects our commitment to provide the highest quality o care or adults and children.

When the new Medi-Cal Benet Program, Partners or Children, came up, we were very excited about the possibil-

ity to participate, as it closely aligned with our mission and expertise. As a not-or-prot organization, promoting

quality o lie at every stage o lie is at the core o our mission and drives our philosophy o care that always asksthe question What is the right thing to do? Many o the innovative programs at San Diego Hospice and The Insti-

tute or Palliative Medicine were created based on the needs o our community. And we are ortunate and grate-

ul or the support rom the community that help make these vital programs a reality, such as The Ellen Browning

Scripps Foundation and The Billingsley Foundation which support our Partners or Children Program.

How do you manage the fscal challenges o caring or children?

As a not-or-prot organization, we understand the importance o being scally responsible in operating our pro-

grams. My hiring practices are such that I acquire the most qualied candidates. My team understands and reviews

operational practices to ensure we are providing quality care, while allowing our sta to nd innovative ways in

meeting our program goals. Our budget is well managed and monitored, orecasting the programs needs and being

scally responsible or all costs involved in the program. Again, we cannot underscore the importance o commu-nity and donor support and we are extremely ortunate to be recognized as a trusted resource in our community

to garner the incredible support we continue to receive, so that we can provide vital programs like Partners or

Children.

How does the Beneft impact this challenge?

The Benet has made a positive impact overall, regarding the scal challenges o caring or children. Prior to the

Benet, some children who were in need o hospice care and symptom management were unable to qualiy or

hospice because doing so meant that they would lose other vital home-based services, such as shit nursing, We

are committed to caring or children in need, regardless o the amilys ability to pay, so oten the services we pro-

vided were not reimbursed. The main nancial impact we have seen is that under the Benet we are now being

reimbursed or providing care or some children who are in need o hospice care but dont currently meet the hos-

pice criteria o having likely less than six months to live or who would lose other vital home-based services, such

as shit nursing, i they were to enroll in hospice. In this way, Partners or Children benets the amilies we serve

as well as our hospice agency. Ultimately, i children can receive the best, most appropriate care or their health

care needs, without emergency room and/or ICU visits, its not only a scal benet, but also an ideal situation or a

child and amily to receive the best care possible in amiliar surroundings.

Can you tell me a story about a amily being served under the Beneft?

One o the amilies we are now serving has seven biological children o their own, and has since adopted nine

additional children. These people dont just oster kids, they oster ragile kids that have no amily ties. That makes

it possible or these children to eventually become an adoptive member o their amily.

Organizational mission:

To prevent and relieve suffering and promote quality

of life, at every stage of life, through patient and family

care, education, research and advocacy.

29

MEDI-CAL BEnEFIT HERoES


31/38


When our art therapist goes out to visit, theyve had almost 20 people involved between sta, kids, and parents.

Its pretty awesome because the expressive therapies are supportive or all the kids in the amily. Were going to

provide music therapy on a one-time experimental basis soon.

In addition, they receive care coordination services. We accompany the child to appointments, monitor their care,

and provide support to their parents and siblings. This amily loves itabsolutely loves it.

How has caring or children made a dierence in your lie and work?

Taking care o these kids and these amilies eels really, really good. It gives me a lot more energy, truthully. It lls

my well. We all need to nd work in areas that eed us. We need to eel that we are making a dierence in the

lives o others. This work does that or me.


The decision to move orward with the program was examined very careully by our management team. As a

not-or-prot agency, we understand that programs such as this will not break even in the budget process as itcurrently stands. Moreover, understanding the economic barriers that our nation has experienced, particularly in

health care, we understood the challenges o taking on a new program. Ultimately, it goes back to our mission and

in meeting the needs o our community; in this case, in meeting the needs o children in our community who need

our help. So thats what we are doing.

We started admitting kids in February o this year. The Benet program itsel started in October; however, state

guidelines or the program were not nalized until January. Within a month o receiving the guidelines, we were

operational.

Is it working?

Yes, it is working. There are a ew challenges that I see but theyre all paperwork and administrative issues. Its not

the program itsel thats the challenge. To be honest, it is a joy to work on this project. I can see what an incredible

dierence it is making in the lives o the children and their amilies that we care or. Im so happy to be a part o it.

30


32/38


RecmmedatisChildrens Hospice and Palliative Care Coalition has developed the ollowing recommendations through the analysis

o PACE data. These assertions take into consideration the state budget crisis and its impact on the Medi-Cal Benetand additional potential barriers to the successul implementation o the program in pilot counties. CHPCC has also

identied areas or urther exploration that are essential to the goal o increasing access to pediatric palliative and

hospice care or vulnerable children in Caliornia.

1. Focus outreach and educational eorts on Medi-Cal Benet pilot counties that demonstrate the greatest opportunity

or successul implementation. Pilot counties selected or this premier status ulll the ollowing requirements:

a) participation o a CCS county oce;

b) high CCS/Medi-Cal population density;

c) critical mass o existing or potential hospice and/or home health provider base willing

or able to care or children;

d) access to pediatric sta; and,

e) willingness to collaborate.

2. With consideration or the act that reimbursement structures under Medi-Cal are more advantageous or agen-

cies that unction with a home health or dual hospice/home health licensure, prioritize working with DHCS to

augment billing codes under the Benet to include pain and symptom management, thereore, ensuring ecacy

and equal opportunity among the provider pool.

3. Increase access to pediatric palliative education among the provider base in premier pilot counties, while also

increasing availability to this learning statewide. Lack o pediatric palliative care knowledge among clinicians

was the singular most popular rationale or providers who responded negatively to caring or children. This

presents a clear opportunity, not only to bolster the pediatric training o stakeholders in the premier territories

but also to ll a knowledge gap that marginalizes children statewide.

4. One hundred percent o the providers currently delivering services under the Medi-Cal Benet in year-one are

not-or-prot entities who have relied on some portion o philanthropic unding to underwrite the unreimbursed

costs associated with the program. These agencies have cited the moral obligation o providing care to children

as a necessary extension, or in ulllment o, their mission-based philosophy. Understanding that the care o

pediatric patients who are chronically ill requires an ethical and nancial commitment, CHPCC suggests that

escalated engagement with the not-or-prot sector in premier counties as a key strategy moving orward.

5. Through continued advocacy, seek to ensure state and ederal unding or the CCS nurse liaison position, speci-

cally in the designated premier counties. With state budget cuts threatening to minimize unding or this stang, it

is essential that CHPCC encourage sustainability or all pilot locations. Challenges o reduced unding can possibly

be mitigated by redirecting resources to premier locations i need be. In addition, explore options or operational-izing the program within CCS regardless o whether unding is available or the CCS nurse liaison position.

6. Continue undamental support to year-one Medi-Cal Benet pilot counties such as Monterey, Santa Cruz, and

San Diego. Streamline communication systems with providers and ensure data compliance and evaluative

protocols remain in place. Continue to collect anecdotal data rom these unctioning pilot counties, with urther

exploration needed to ascertain the sot benets o the concurrent care approach.

SuMMARy ConCLuSIonS

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7. Pursue alteration o the Benets medical eligibility criteria with the goal o expanding support to all CCS

children enrolled as ull-scope Medi-Cal who are living with lie-threatening conditions. While this may be con-

sidered an expansive goal, it is important to consider the pediatric waiver programs in Washington and Florida;

programs that boast an open enrollment and that do not employ rigid eligibility guidelines. During the devel-opment phase o the Benet, it was originally determined that restrictive eligibility criteria was necessary to

prohibit the program rom being overrun with cases o chronic, but not necessarily lie-threatening illness. How-

ever, as enrollment has progressed, it has become clear that children and amilies or whom Benet services

were intended, are being rejected; a undamental faw in the implementation process that must be addressed.

8. Promote collaboration among pilot site providers as an eective strategy or bundling Benet services. Utilize

the Monterey County pilot as a successul example o how collaboration can yield improved service delivery and

ease the nancial burden o providing community-based pediatric palliative care.

Isses r Frther EplratiCost Neutrality. Explore nancial models that demonstrate the Benets ecacy in both the or-prot and not-or-prot

sectors. Take into consideration the impact o reimbursement structures as they relate to each unique provider type.

Pediatric Expertise. The lack o pediatric expertise has been identied as a signicant barrier to sustaining, ex-

panding, and/or establishing a pediatric program. Further research should be considered as a means or exploring

the actual levels o pediatric expertise present in the pilot counties and the underlying reasons behind this shortage

such as lack o interest or opportunity.

Philosophical Barrier. Explore the philosophical notion that home health agencies are not qualied to provide pe-

diatric palliative care. Conduct research to understand whether there is any material evidence to support this claim.

Reimbursement Opportunity. In order to augment opportunities or the reimbursement o pediatric home-basedservices, explore strategies or engaging commercial payers.

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METHoDoLoGy

Samplig MethdThe primary aim o PACE was to create a comprehensive snapshot o what the situation is like on the ground in

the 13 pilot counties. CHPCC set out to perorm an extensive electronic and phone survey o all providers in these

regions. The initial sampling rame was based on the 2009 Caliornia Oce o Statewide Health Planning and

Development utilization report, an ocial government document that lists all legitimate hospice and home health

providers in the state. The roster was augmented with web-based provider research conducted by CHPCC or each

o the counties and surrounding territories.

Every provider named in the roster was contacted by telephone individually, and responses were gathered rom

senior level sta, i possible. Unortunately, a great number o providers were unable to participate or, at times,

reused to cooperate entirely. Overall, 486 surveys were completed, 43% o the initial provider population segment.

Given the short time rame or completing PACE, and the challenges inherent in conducting phone-based outreach

to a broad contingent o health care proessionals, CHPCC rmly believes that the nal sample is as representative

as humanly possible o the general population o interest.

Sre DeelpmetThe survey was designed in collaboration with Betty Ferrell, Ph.D., FAAN, City o Hope Proessor, Nursing Research

and Education. Its overall structure can be viewed in Appendix 1. In general, the survey branches into two dierent

tracks depending on whether or not the agency in question cares or children. I the agency does not care or pe-

diatric patients, the respondent is asked to rank their willingness and current ability to expand services to children

on a six-point scale. They also are queried regarding institutional requirements or extending care to children.

For those agencies that do serve pediatric patients, the respondents are asked numerous detailed questions, such

as: what type o services are provided, the number o qualied pediatric nurses on sta, current capacity, i and

why they have declined children, the percentage o children currently covered under Medi-Cal, and others. Re-

gardless o whether the agency cares or children, all respondents are asked i they reer pediatric patients to other

agencies and or what services, and are ranked by CHPCC in terms o overall likelihood or uture participation in

the pilot program.

The survey is designed to be both quantitative and qualitative. For example, each area o the survey orm that

allows or multiple choices also allows or open-ended responses to help supplement the inormation provided.

Furthermore, the survey also includes a comments section which was completed by CHPCCs researchers and was

used specically to capture additional inormation, such as poignant quotes or testimonials.

S

pace (pilot assessment and capacity evaluation)

Documents