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

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

  • 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 ® ).
    • Describe Florida’s CHI PACC ® program
    • Discuss ICHP evaluation methodology
    • Show results from the evaluation
    • Lessons learned
    Overview
    • 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?
  • What is PIC:TFK?
    • First government subsidized pediatric palliative care program in the U.S.
    • Services started July 2005
    • Partnerships:
    • Florida Hospices and Palliative Care
    • Children’s Medical Services Network (Title V Agency)
    • Agency for Health Care Administration (Medicaid Agency)
    CMSN AHCA Hospice ICHP
  • 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.
    • 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
  • 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
  • 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)
  • 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.
  • Year 1 Evaluation Activities
    • SURVEYS
    • ICHP developed & fielded:
    • Survey for parents and children
    • Hospice survey based on EQRO federal requirements
    • SITE VISITS
    • Attended site visits with CMS headquarters
  • Enrollment trends
  • 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
  • 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
  • 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)
  • 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
  • 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%.
  • 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%.
  • Length of Time From Enrollment to Receipt of Services
  • Satisfaction with PIC:TFK Benefits
  • Consumer Assessment of Health Plans
  • 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
  • Contact Information: Caprice Knapp, PhD [email_address] Vanessa Madden, BsC [email_address] Elizabeth Shenkman, PhD [email_address]