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Annual Evaluation of Florida’s Partners in Care: Together for Kids

Program

A Children’s Hospice International Program for All-Inclusive Care for Children and Their Families (CHI PACC ®).

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• Describe Florida’s CHI PACC® program

• Discuss ICHP evaluation methodology

• Show results from the evaluation

• Lessons learned

Overview

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• A Pediatric palliative care program for children with potentially-life limiting conditions.

• PIC:TFK is modeled after Children’s Hospice International’s integrated model, Program for All-Inclusive Care for Children (CHI PACC® )

What is PIC:TFK?

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What is PIC:TFK?• First government subsidized pediatric

palliative care program in the U.S.

• Services started July 2005

CMSN

AHCA

Hospice

ICHP

Partnerships:

• Florida Hospices and Palliative Care

• Children’s Medical Services Network (Title V Agency)

• Agency for Health Care Administration (Medicaid Agency)

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What is PIC:TFK?• 9 sites

• Limited to 940 Medicaid children

• 150 Title XXI

• Children must be 0-21 years of age

• Children must be certified annually by PCP as having a potentially life-limiting condition.

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• In 2000, Florida was one of 5 states funded by appropriations to develop a PACC® Model Program.

• States were initially encouraged to submit a 1115 Research and Demonstration Waiver.

• In 2004, federal CMS and CHI recommended that states submit 1915 Program Waivers.

• In June 2005, PIC:TFK services were approved and added to the Florida’s Managed Care Waiver 1915(b).

• The Waiver extends over 2 years.

PIC:TFK History

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PIC:TFK In Home Services• Pain and Symptom Consultation• Nursing Care• Therapeutic Counseling for Child and

Family• Art, Music, Play Therapies for Child and

Family• In-home and Inpatient Respite• Personal Care• Bereavement Support & Volunteer

Services**Non reimbursed

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What diagnoses will children have?• HIV/AIDS• Cancer• Chromosomal disorders• Congenital defects or anomalies• Hematological abnormalities• Metabolic disorders• Trauma• Muscular dystrophy• Neurodegenerative disorders• Other (Co-Morbidities)

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Who may benefit from Palliative Care?• Newly Diagnosed Stage: Children diagnosed

within the first 3 months and who may/may not be in curative care.

• Mid Stage: Children who are 4 months or more post-diagnosis and who are on active treatment and/or intervention.

• End of Life Stage: Children who are 4 months or more post-diagnosis and who are not responding to a normal course of treatment/interventions for their diagnosis and future options are limited.

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Year 1 Evaluation ActivitiesSURVEYSICHP developed & fielded:• Survey for parents and children• Hospice survey based on EQRO federal

requirements

SITE VISITS• Attended site visits with CMS headquarters

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Enrollment trends

0

50

100

150

200

250

300

350

400

A S O N D J F M A M J J A S O N J M M J JMonth

Enro

lles

Enrollees

Activeenrollees

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PIC Enrollment Trends• 27% of the Medicaid enrollment slots are

filled*• 80% of enrollees are in stage 2, and 10%

are in both stages 1 and 3• 91% are Title 19, 7% Title 21, and 2%

Safety-Net• Leading diagnoses are:

• Brain Injury/development• Congenital Anomaly• MD• HIV• CP

*As of April 2007

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Barriers to Enrollment• Bias from nurses and physicians• Some diagnoses are not consistently

referred (HIV)• Lack of understanding about palliative

care• Enrolled versus Actively Enrolled• Similar programs in the community

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Recommendations to Increase Enrollment• ICHP produces a diagnostic driven

potential enrollment list• Training of nurses• Formal screening tool is needed• Adjust enrollment to reflect active

enrollees• Address systematic referral

inconsistencies (HIV)

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Barriers for Hospice• Enrollment may not justify new staff• Adequate staff needed to provide all

services• Not all sites provide full complement

of PIC services• Billing issues

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How PIC:TFK Families Learned About the Program• Nurse care coordinator 52%,• Provider 16%,• Brochure 5%,• Friend or family member 8%,• Social service agency 6%,• Hospital 11%, and• Other 23%.

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Parent Reported Services that PIC:TFK Children Have Received• Support counseling 61%,• Music therapy 30%,• Art therapy 11%,• Play therapy 9%,• Pain and symptom management 15%,• Personal care 15%, and• Nursing care 54%.

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Length of Time From Enrollment to Receipt of Services

41%

15% 24%3% 3%

15%

0%20%40%60%80%

100%

2 weeks orless

3 weeks 1 month >1 month <2months

2 months Over 3 months

Percen

tage

Time to Receipt of Services

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Satisfaction with PIC:TFK Benefits

45% 41%

7% 2% 5%0%

20%40%60%80%

100%

Very Satisfied Satisfied Neither SomewhatDissatisfied

Very Dissatisfied

Percen

tage

Satisfaction w ith Benefits

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Consumer Assessment of Health Plans

84 83 85 89 78

020406080

100

DoctorCommunication

Family CenteredCare- PersonalDoctor or Nurse

Family CenteredCare- Shared

Decision Making

Family CenteredCare- Getting

NeededInformation

Care Coordination

Scor

e

CAHPS Composites

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Parent Survey Recommendations

• Agents other than nurse care coordinators should play a larger role in referrals

• Investigate why time of invitation/receipt of services varies

• Evaluate the service benefit package for effectiveness

• Try and speak with children/teens about their experiences

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Contact Information:

Caprice Knapp, PhDcak@ichp.ufl.edu

Vanessa Madden, BsCvlm@ichp.ufl.edu

Elizabeth Shenkman, PhDeas@ichp.ufl.edu