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California’s Pediatric Palliative Care Pilot Waiver

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

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

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  • 1. California’s Pediatric Palliative Care Pilot Waiver
  • 2. California Children’s Services (CCS) Overview CCS is California’s Title V program for  children with special health care needs (CSHCN) CCS programs are operated in local county  health departments with oversight by the State CMS Branch CCS covers diagnostic and treatment  services as related to the CCS eligible medical condition.
  • 3. CCS Overview The CCS program is 80 years old and covers CSHCN  from birth to age 21 Medical eligibility includes certain physical limitations  and chronic health conditions or diseases, such as: – Congenital heart disease – Neoplasms – HIV – Certain blood disorders like hemophilia and sickle cell anemia – Serious birth defects – Nervous system disorders like cerebral palsy and uncontrolled seizures
  • 4. California’s History of Developing a Pediatric Palliative Care Program The Children’s Hospice and Palliative Care Coalition  (CHPCC) and CA Hospice Association first contacted Medi-Cal in 2002, but State budget deficits interfered. 2004 Medi-Cal received public input during  healthcare reform meetings and contacted State CMS Branch. 2005 State CMS Branch, along with Medi-Cal  counterparts held 2 meetings to determine extent of interest for pediatric palliative care.
  • 5. California’s History of Developing a Pediatric Palliative Care Program CHPCC proposed a partnership with Medi-Cal/CMS to  demonstrate the effectiveness of pediatric palliative and bereavement care, waiving the current hospice eligibility criteria for children with life-threatening conditions, thereby allowing children to maintain CCS benefits while receiving palliative/hospice-like services. Several conference calls were held, both internally,  and externally to determine the best approach.
  • 6. California’s History of Developing a Pediatric Palliative Care Program After analyzing both state and federal  statute, it was determined the only option would be new legislation. In late 2005, Assembly member Chan wrote  AB 1745 legislation, requiring the Dept. to develop a pediatric palliative care waiver. Sept. 2006, Gov. signed AB 1745 into law. 
  • 7. California’s Legislation Requirements Department with interested stakeholders to  develop, as a pilot project, a pediatric palliative care benefit Department to submit waiver application for  Federal approval Eligible waiver beneficiaries to have both  CCS and Medi-Cal eligibility
  • 8. California’s Legislation Requirements Population may be further limited to a size  deemed sufficient to evaluate whether pediatric palliative care benefits should be included in the State Plan. Services to include those similar to the  Medi-Cal hospice benefit Authorized providers to include home health  and hospice agencies
  • 9. Department and Stakeholder Meetings Convened 1st stakeholder meeting on  Nov. 30, 2006. Group included MDs, nurses, social  workers, parents, hospices, home health agencies, hospice/palliative care coalitions and associations, as well as county and state staff.
  • 10. Department and Stakeholder Meetings Discussion about pediatric palliative care principles,  waiver development process, legislation, existing law, and State and County roles 1915 (c) Home and Community Based Services  waiver determined most appropriate to suit California’s needs Brainstorming activity led to formation of 3  subcommittees to develop waiver parameters
  • 11. Stakeholder Subcommittees Eligibility: defining waiver population  – Must be medically eligible for CCS – Must have Medi-Cal eligibility Service delivery model  – What provider types and qualifications? – What services to be included? Data measures for evaluation purposes 
  • 12. Stakeholder Subcommittee Recommendations Eligibility--Conditions Appropriate for Pediatric  Palliative Care: NEJM, Vol. 350(17). April 22, 2004. 1752-1762: – Curative treatment is possible but may fail – Requires intensive long-term treatment aimed at maintaining quality of life – Progressive illness in which treatment is exclusively palliative after diagnosis – Involves severe, non-progressive disability, causing extreme vulnerability to health complications
  • 13. Stakeholder Subcommittee Recommendations Eligibility--Complexity requirements: WA State  criteria—3 out of the following 6: – Immediate medical needs in a time of crisis – Coordination with family members and providers is required in more than 1 setting – A life-limiting medical condition that impacts cognitive, social, and physical development – A medical condition with which the family is unable to cope – Family member(s) and/or caregiver who needs additional knowledge or assistance with client’s medical needs – Therapeutic goals focused on quality of life, comfort, and family stability
  • 14. Stakeholder Subcommittee Recommendations Service Delivery Model  – Pilots to be located in limited # of counties or geographic regions – Providers to include Medi-Cal approved Hospice and Home Health Agencies – Services to include care coordination, respite, bereavement, family training, and expressive therapies (including child life specialist)
  • 15. Stakeholder Subcommittee Recommendations Data measures for evaluation  purposes: qualitative and quantitative – Patient and family surveys – Waiver provider surveys – Quality care indicators – Federal data requirements, including # of enrolled clients – Paid claims data for cost neutrality purposes
  • 16. Next Steps Currently writing waiver application, with guidance  from Medi-Cal Waiver Analysis Section and Federal CMS Submit completed application by 1/1/08 to Federal  CMS Develop implementation/operational plan for  participating counties and waiver providers Develop training program for participating counties  and waiver providers Implement waiver within 12 months of date of  approval.
  • 17. Website to follow CA’s waiver  development: – http://www.dhs.ca.gov/pcfh/cms/ppc/.