California’s Pediatric Palliative Care PFC Agency Training, Session 1, Overview January 30, 2013

1. California’s Pediatric Palliative Care PFC Agency Training, Session 1, Overview January 30, 2013

3. Pre-Training Quiz • Pediatric palliative care is the same as hospice services, with the same eligibility, but also allows curative treatment (T/F) • Children are enrolled in PFC directly by the PFC approved hospice agency, after referral from hospital or clinic (T/F) • The PFC Care Plan is reviewed at least every 60 days (T/F) • PFC Agencies can begin providing services with a care coordinator and nurse, while in the process of hiring expressive therapists (T/F) • The Care Coordinator must discuss each case with the CCSNL at the time of enrollment only (T/F)

4. Outline • Pediatric Palliative Care • Concurrent Care • PFC Overview • Eligibility • Enrollment • Services - all • Care Coordinator • Summary • Evaluation

5. What Is Pediatric Palliative Care? Pediatric palliative care (PPC) is both a philosophy and a method for delivering • competent, • compassionate, • consistent, • culturally appropriate care to children with chronic, complex and/or life-threatening conditions and their families. PPC includes end of life and long term supportive care

6. What Is Pediatric Palliative Care Outside The Hospital? • Family-centered & long term goal-oriented • Services in setting aligned with goal –home, clinic, school • Pain/symptom management • Support for child • Social & emotional & age-appropriate • Support for family

7. Why Do We Need Pediatric Palliative Care Outside the Hospital? • Supports family decision-making • Includes family members on the care team • Improves continuity of care across settings • Decreases number of medical crises • Decreases hospital admissions

8. Children’s Medical Services and Palliative Care • 2007: CCS 1915(c) waiver program Partners for Children (PFC) • 2007: CCS numbered letter describing available State Plan services • 2009: PFC numbered letter • 2010: PFC begins • 2010: Concurrent Care for Children

9. Concurrent Care • March 2010 Affordable Care Act • Section 2302: Concurrent care • Election of hospice shall not constitute a waiver of any rights of the child to be provided with, or to have payment made for services related to the (curative) treatment of [condition that makes child eligible for hospice]

10. Concurrent Care – What It Adds… and Limitations • Patient under 21 can elect hospice while continuing curative treatment • Six month life expectancy • “Hospice” associations • State plan coverage of “curative” not “palliative”

11. Partners For Children • Goal • Help the participant to successfully and safely live in the community, • To receive medically necessary care to remain in the community, and • To decrease institutionalization in an acute care hospital. • Cost effective.

12. Enrollment and Services • Around 150, age, demographics of enrolled (around 50% Spanish speaking) • Active agencies: 6 hospice and 2 home health agencies • Medical conditions (MD, CF, cancer, HIE, intractable seizures, etc.…) • Wait list (over 50) • Most valuable service: care coordination, expressive therapies

13. Who is eligible? Applicant must meet all of the following: Be under 21 yrs old Have “full scope” Medi-Cal Reside in a participating county Have a CCS-eligible life-threatening medical condition Meet Waiver Level of Care

14. Medical Eligibility • Level of Care • Neoplasms • Cardiac • Pulmonary • Immune • Gastrointestinal • Renal • Neurologic

15. Medical Eligibility • Metabolic • Neuromuscular • Other Conditions • Severe Epidermolysis Bullosa • Sever Osteogenesis Imperfect • Congenital infection with sever sequelae • Post-organ transplant with complications

16. Eligible? (cont.) The child must be on only one 1915 (c) HCBS waiver Children enrolled in the PFC waiver cannot be in hospice simultaneously When enrolled in PFC, the child and family can receive palliative care services through the waiver

17. Partners for Children Enrollment CCSNL CareCoordinator Referral

18. Enrollment- Referral • Referral sources • Specialist or other SCC team member • Primary care physician • Hospital team • Friends/family/other community • CCSNL case finding • Hospice or Home Health Agency

19. Enrollment:CCSNL Independent County CCS Nurse Liaison is selected by county to work with waiver clients/families CCSNL Finds/ eligible client Participant agreement, Freedom of Choice Health & Welfare Connects client with agency Reviews care plan Authorizes services Communicates, collaborates, coordinates care with client and agency Assists in obtaining state plan services Provides local oversight

20. Enrollment: Care Coordinator Nurse and Social Worker Meet with family, Develop care plan (F-CAP), Request services through F-CAP via CCSNL Coordinate waiver, non-waiver and community services Family centered conference every 60 days with family and CCSNL Health & Welfare

21. Pediatric Palliative Care Options

22. Pediatric Palliative Care Music therapy Care coordination Child Life therapy Pain management Family Centered Care Plan based on family/child desires Counseling Bereavement Care Art therapy Personal care Respite massage 22

23. Care Coordinator • A key function of care coordination is for a Care Coordinator to assume a large part of the burden of responsibility, otherwise placed on the parents, for condensing, organizing, and making accessible to providers critical information that is related to care and necessary for effective medical management.

24. What Services Are Offered? Community-Based Care Coordination by Agency Assessment of goals of care of participant & family Creation of Family-Centered Action Plan (F-CAP) with input from family and interdisciplinary care team Communication of plan across all settings including family, CCS & health care team, school or other settings 24/7 on call nurse Advocacy for the child

25. What Services Are Offered?... Pain and symptom management Expressive therapies Art, music, play, massage Respite care In-home and out-of-home Family education Bereavement support – for child as end of life approaches, for family before and after death

26. Provider Application Updates • Agency changes • Any staffing changes – • 14 days • Notify PFC State staff • ccsppc@dhcs.ca.gov • PFC voicemail: 1-866-418-2933

27. Other Provider Responsibilities • Record keeping (including record of communications, therapist notes, bereavement log) • 24/7 on call nurse • Update state on staff changes • Health and welfare • Quality assurance reporting • Quarterly PFC meetings with state

28. PFC Evaluation • UCLA Center for Health Policy • Interim evaluation completed • Satisfaction surveys – • Family score 9.6/10, 97% would recommend • CCSNL score: 9.8/10 • PFC Agency score: 7.8/10

29. PFC Summary • PFC Waiver • Enrollment • Services • Care Coordinator/ CCSNL • Provider Responsibilities • Future Webinars

30. Future Webinars • Care Coordinator/ CCSNL/Communication • F-CAP • Services/Billing • Federal Assurances/Health and Welfare • Agency Responsibilities/ Summary/Questions

31. State PFC contact information • ccsppc@dhcs.ca.gov • PFC voicemail: 1-866-418-2933

32. Questions and Comments?