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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, [email protected]
Vanessa Madden, [email protected]
Elizabeth Shenkman, [email protected]