annual evaluation of florida’s partners in care: together for kids program
DESCRIPTION
Presented at the National Academy for State Health Policy's 20th Annual State Health Policy Conference in Denver, Colorado. Author: Caprice KnappTRANSCRIPT
1
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 ®).
2
• Describe Florida’s CHI PACC® program
• Discuss ICHP evaluation methodology
• Show results from the evaluation
• Lessons learned
Overview
3
• 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?
4
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)
5
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.
6
• 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
7
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
8
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)
9
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.
10
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
11
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
12
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
13
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
14
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)
15
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
16
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%.
17
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%.
18
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
19
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
20
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
21
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
22
Contact Information:
Caprice Knapp, [email protected]
Vanessa Madden, [email protected]
Elizabeth Shenkman, [email protected]