Annual Evaluation of Florida’s Partners in Care: Together for Kids Program   A Children’s Hospice International Program fo...
<ul><li>Describe Florida’s  CHI PACC ®   program </li></ul><ul><li>Discuss ICHP evaluation methodology </li></ul><ul><li>S...
<ul><li>A Pediatric palliative care program for children with potentially-life limiting conditions.  </li></ul><ul><li>PIC...
What is PIC:TFK? <ul><li>First government subsidized pediatric palliative care program in the U.S. </li></ul><ul><li>Servi...
What is PIC:TFK? <ul><li>9 sites </li></ul><ul><li>Limited to 940 Medicaid children  </li></ul><ul><li>150 Title XXI </li>...
<ul><li>In 2000, Florida was one of 5 states funded by appropriations to develop a PACC® Model Program.  </li></ul><ul><li...
PIC:TFK In Home Services <ul><li>Pain and Symptom Consultation </li></ul><ul><li>Nursing Care </li></ul><ul><li>Therapeuti...
What diagnoses will children have? <ul><li>HIV/AIDS </li></ul><ul><li>Cancer </li></ul><ul><li>Chromosomal disorders </li>...
Who may benefit from Palliative Care? <ul><li>Newly Diagnosed Stage: Children diagnosed within the first 3 months and who ...
Year 1 Evaluation Activities <ul><li>SURVEYS </li></ul><ul><li>ICHP developed & fielded: </li></ul><ul><li>Survey for pare...
Enrollment trends
PIC Enrollment Trends <ul><li>27% of the Medicaid enrollment slots are filled* </li></ul><ul><li>80% of enrollees are in s...
Barriers to Enrollment <ul><li>Bias from nurses and physicians </li></ul><ul><li>Some diagnoses are not consistently refer...
Recommendations to Increase Enrollment <ul><li>ICHP produces a diagnostic driven potential enrollment list </li></ul><ul><...
Barriers for Hospice <ul><li>Enrollment may not justify new staff </li></ul><ul><li>Adequate staff needed to provide all s...
How PIC:TFK Families Learned About the Program <ul><li>Nurse care coordinator 52%, </li></ul><ul><li>Provider 16%, </li></...
Parent Reported Services that PIC:TFK Children Have Received <ul><li>Support counseling 61%, </li></ul><ul><li>Music thera...
Length of Time From Enrollment to  Receipt of Services
Satisfaction with PIC:TFK Benefits
Consumer Assessment of Health Plans
Parent Survey Recommendations <ul><li>Agents other than nurse care coordinators should play a larger role in referrals </l...
Contact Information: Caprice Knapp, PhD [email_address] Vanessa Madden, BsC [email_address] Elizabeth Shenkman, PhD [email...
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Annual Evaluation of Florida’s Partners in Care: Together for Kids Program

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Presented at the National Academy for State Health Policy's 20th Annual State Health Policy Conference in Denver, Colorado. Author: Caprice Knapp

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

    1. 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. 2. <ul><li>Describe Florida’s CHI PACC ® program </li></ul><ul><li>Discuss ICHP evaluation methodology </li></ul><ul><li>Show results from the evaluation </li></ul><ul><li>Lessons learned </li></ul>Overview
    3. 3. <ul><li>A Pediatric palliative care program for children with potentially-life limiting conditions. </li></ul><ul><li>PIC:TFK is modeled after Children’s Hospice International’s integrated model, Program for All-Inclusive Care for Children ( CHI PACC ® ) </li></ul>What is PIC:TFK?
    4. 4. What is PIC:TFK? <ul><li>First government subsidized pediatric palliative care program in the U.S. </li></ul><ul><li>Services started July 2005 </li></ul><ul><li>Partnerships: </li></ul><ul><li>Florida Hospices and Palliative Care </li></ul><ul><li>Children’s Medical Services Network (Title V Agency) </li></ul><ul><li>Agency for Health Care Administration (Medicaid Agency) </li></ul>CMSN AHCA Hospice ICHP
    5. 5. What is PIC:TFK? <ul><li>9 sites </li></ul><ul><li>Limited to 940 Medicaid children </li></ul><ul><li>150 Title XXI </li></ul><ul><li>Children must be 0-21 years of age </li></ul><ul><li>Children must be certified annually by PCP as having a potentially life-limiting condition. </li></ul>
    6. 6. <ul><li>In 2000, Florida was one of 5 states funded by appropriations to develop a PACC® Model Program. </li></ul><ul><li>States were initially encouraged to submit a 1115 Research and Demonstration Waiver. </li></ul><ul><li>In 2004, federal CMS and CHI recommended that states submit 1915 Program Waivers. </li></ul><ul><li>In June 2005, PIC:TFK services were approved and added to the Florida’s Managed Care Waiver 1915(b). </li></ul><ul><li>The Waiver extends over 2 years. </li></ul>PIC:TFK History
    7. 7. PIC:TFK In Home Services <ul><li>Pain and Symptom Consultation </li></ul><ul><li>Nursing Care </li></ul><ul><li>Therapeutic Counseling for Child and Family </li></ul><ul><li>Art, Music, Play Therapies for Child and Family </li></ul><ul><li>In-home and Inpatient Respite </li></ul><ul><li>Personal Care </li></ul><ul><li>Bereavement Support & Volunteer Services* </li></ul><ul><li>*Non reimbursed </li></ul>
    8. 8. What diagnoses will children have? <ul><li>HIV/AIDS </li></ul><ul><li>Cancer </li></ul><ul><li>Chromosomal disorders </li></ul><ul><li>Congenital defects or anomalies </li></ul><ul><li>Hematological abnormalities </li></ul><ul><li>Metabolic disorders </li></ul><ul><li>Trauma </li></ul><ul><li>Muscular dystrophy </li></ul><ul><li>Neurodegenerative disorders </li></ul><ul><li>Other (Co-Morbidities) </li></ul>
    9. 9. Who may benefit from Palliative Care? <ul><li>Newly Diagnosed Stage: Children diagnosed within the first 3 months and who may/may not be in curative care. </li></ul><ul><li>Mid Stage: Children who are 4 months or more post-diagnosis and who are on active treatment and/or intervention. </li></ul><ul><li>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. </li></ul>
    10. 10. Year 1 Evaluation Activities <ul><li>SURVEYS </li></ul><ul><li>ICHP developed & fielded: </li></ul><ul><li>Survey for parents and children </li></ul><ul><li>Hospice survey based on EQRO federal requirements </li></ul><ul><li>SITE VISITS </li></ul><ul><li>Attended site visits with CMS headquarters </li></ul>
    11. 11. Enrollment trends
    12. 12. PIC Enrollment Trends <ul><li>27% of the Medicaid enrollment slots are filled* </li></ul><ul><li>80% of enrollees are in stage 2, and 10% are in both stages 1 and 3 </li></ul><ul><li>91% are Title 19, 7% Title 21, and 2% Safety-Net </li></ul><ul><li>Leading diagnoses are: </li></ul><ul><ul><li>Brain Injury/development </li></ul></ul><ul><ul><li>Congenital Anomaly </li></ul></ul><ul><ul><li>MD </li></ul></ul><ul><ul><li>HIV </li></ul></ul><ul><ul><li>CP </li></ul></ul><ul><li>*As of April 2007 </li></ul>
    13. 13. Barriers to Enrollment <ul><li>Bias from nurses and physicians </li></ul><ul><li>Some diagnoses are not consistently referred (HIV) </li></ul><ul><li>Lack of understanding about palliative care </li></ul><ul><li>Enrolled versus Actively Enrolled </li></ul><ul><li>Similar programs in the community </li></ul>
    14. 14. Recommendations to Increase Enrollment <ul><li>ICHP produces a diagnostic driven potential enrollment list </li></ul><ul><li>Training of nurses </li></ul><ul><li>Formal screening tool is needed </li></ul><ul><li>Adjust enrollment to reflect active enrollees </li></ul><ul><li>Address systematic referral inconsistencies (HIV) </li></ul>
    15. 15. Barriers for Hospice <ul><li>Enrollment may not justify new staff </li></ul><ul><li>Adequate staff needed to provide all services </li></ul><ul><li>Not all sites provide full complement of PIC services </li></ul><ul><li>Billing issues </li></ul>
    16. 16. How PIC:TFK Families Learned About the Program <ul><li>Nurse care coordinator 52%, </li></ul><ul><li>Provider 16%, </li></ul><ul><li>Brochure 5%, </li></ul><ul><li>Friend or family member 8%, </li></ul><ul><li>Social service agency 6%, </li></ul><ul><li>Hospital 11%, and </li></ul><ul><li>Other 23%. </li></ul>
    17. 17. Parent Reported Services that PIC:TFK Children Have Received <ul><li>Support counseling 61%, </li></ul><ul><li>Music therapy 30%, </li></ul><ul><li>Art therapy 11%, </li></ul><ul><li>Play therapy 9%, </li></ul><ul><li>Pain and symptom management 15%, </li></ul><ul><li>Personal care 15%, and </li></ul><ul><li>Nursing care 54%. </li></ul>
    18. 18. Length of Time From Enrollment to Receipt of Services
    19. 19. Satisfaction with PIC:TFK Benefits
    20. 20. Consumer Assessment of Health Plans
    21. 21. Parent Survey Recommendations <ul><li>Agents other than nurse care coordinators should play a larger role in referrals </li></ul><ul><li>Investigate why time of invitation/receipt of services varies </li></ul><ul><li>Evaluate the service benefit package for effectiveness </li></ul><ul><li>Try and speak with children/teens about their experiences </li></ul>
    22. 22. Contact Information: Caprice Knapp, PhD [email_address] Vanessa Madden, BsC [email_address] Elizabeth Shenkman, PhD [email_address]
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