Web conference explaining California's new pediatric hospice and Palliative Care Benefit. In two parts: palliative care for children explained and what is the wiaiver?

1. Fundamentals of Pediatric Palliative Care California’s Pediatric Palliative Care Benefit Leslie Adams MSW, LICSW Lori Butterworth Devon Dabbs Gay Walker RN, CHPC

6. Pediatric palliative and/or hospice care is both a philosophy and an organized method for delivering competent, compassionate and consistent care to children with chronic, complex and/or life-threatening conditions and their families. This care focuses on enhancing quality of life , minimizing suffering , optimizing function and providing opportunities for personal and spiritual growth. National Hospice and Palliative Care Organization (2009)

7. Pediatric palliative care can be delivered concurrently with life-prolonging care or as the main focus of care and is treatment that should be started early in the trajectory of the condition. It preserves the integrity of the family during the disease progression, addressing anticipatory grief and bereavement support following the death. Children’s Hospice and Palliative Care Coalition (2007)

12. Curative treatment Palliative treatment D E A T H Bereavement Historical Model of Palliative Care Diagnosis

13. Curative treatment Palliative treatment D E A T H Bereavement Alternative Model of Palliative Care Diagnosis

14. Curative treatment Palliative treatment Death Pediatric Model of Palliative Care DIAGNOSIS Loss

15. Curative treatment Palliative treatment Waiver: Getting in Earlier DIAGNOSIS Loss

16. Palliative Care, Hospice, Home Health Home health provides skilled care and is rehab oriented. The philosophy is to empower patient toward independence through intermittent visits at home. Hospice care provides interdisciplinary team expertise at end of life, including pain and symptom management. The philosophy is to focus on quality of life. Palliative Care may include both of these services.

18. Patient and Family Outcomes Child receives expert pain and symptom management With End of Life Choices, parents are better prepared. (Dussel, Journal of Pain and Symptom Management, 2009) Better communication, parents have better understanding, feel better understood (Hays, JPM, 2006) Increased continuity of care (Hays, JPM, 2006)

21. Community Based Palliative Care Coordination California’s Pediatric Palliative Care Benefit Lori Butterworth and Devon Dabbs

34. California’s Pediatric Palliative Care Benefit Part 2 – The Waiver Year 1 (300) July 2009 Alameda Monterey San Diego Santa Clara Santa Cruz Year 2 (801) January 2010 Alameda Monterey San Diego Santa Clara Santa Cruz Humboldt Marin Orange Sacramento San Francisco Sonoma Year 3 (1802) January 2011 Alameda Monterey San Diego Santa Clara Santa Cruz Humboldt Marin Orange Sacramento San Francisco Sonoma Fresno Los Angeles

37. The Case for Coordinated Care Identified by Waiver Advisory Group as the most critical unmet need for children with life-threatening conditions and their families. Goal: Developing a reimbursable Care Coordination service CCS Case Managers – average 1 case manager to 700/1,000 children - Agency Based Case Managers work within institution/agency CCS Nurse Liaison – New Position Community Based Care Coordinator – New Position – average caseload 1/20

38. Keystone to Success STATE PLAN/EPSDT Services See Numbered Letter Waiver Services Care Coordination Respite Care Bereavement Counseling Expressive therapies Family Training Community Services Family + Care Coordinator Coordination of Services

40. Children’s Hospice and Palliative Care Coalition Mission Statement The mission of Children’s Hospice and Palliative Care Coalition is to ensure compassionate, comprehensive care for children with life-threatening conditions. Together with their families, we speak out for those too little or too sick to speak for themselves, and create programs that directly improve the quality of their lives. We need your voice! Join us…everyone is welcome!

41. Children’s Hospice and Palliative Care Coalition We need your voice! Join us…everyone is welcome! Individual Membership $50 Organizational Membership $500 Legislative Advocate: Terri Cowger Hill, Cowger and Associates A voice for children in Sacramento!

42. Children’s Medical Services Branch California Children’s Services Waiver Analysis Branch Jill M Abramson, MD MPH FAAP, Section Chief, Program Development Children's Medical Services, DHCS 1515 K St. , Ste 400 Sacramento, CA 95814 916-327-2487 [email_address] California State Department of Healthcare Services

43. To find the best in others; To give of one's self; To leave the world a bit better, To know even one life has breathed easier because you have lived - This is to have succeeded. Ralph Waldo Emerson

44. Benefit Education Support and Training – BEST in Pediatrics