Partnerships for Successful Transition: The Philadelphia Department of Public Health Experience

1. Partnerships for Successful Transition: The Philadelphia Department of Public Health Experience Transition to Adult Health Care Work Group

2. Presenters Nick Claxton, CQSW Children with Special Health Care Needs Maternal, Child & Family Health Philadelphia Department of Public Health nick.claxton@phila.gov 215-685-5232 Molly Gatto, MHA Program Director, EPIC IC Medical Home Program PA Chapter AAP mgatto@paaap.org Symme W. Trachtenberg, MSW, LSW Director, Community Education: The Children’s Hospital of Philadelphia Clinical Associate in Pediatrics, University of PA School of Medicine Part-time Lecturer, University of PA School of Social Policy and Practice trachtenberg@email.chop.edu 215-590-7444 Renee Turchi, MD, MPH Medical Director, EPIC IC Medical Home Program PA Chapter AAP Medical Director Center for Children with Special Needs St. Christopher’s Hospital for Children Renee.Turchi@drexelmed.edu

3. History of the Transition to Adult Health Care Work Group • A “subcommittee” of the Philadelphia Special Needs Work Group (SNWG) • Formed in early 2008 to address problems encountered by youth transitioning to the adult health care system • Decision to choose a limited number of achievable goals

4. History of the Transition to Adult Health Care Work Group • Families often feel constrained that they can see a pediatrician OR an adult provider, with no overlap to make an informed decision • Difficult for parents to find adult oriented physicians they felt comfortable with • Not enough adult physicians • Relatively few Family Practice or Internal Medicine practitioners working with patients with childhood-onset special needs.

5. History of the Transition to Adult Health Care Work Group • Composition of the Work Group • Cross-system collaboration • Interested professionals and parents from various fields: pediatrics, social work, insurance, parents and other advocates, child welfare, AAP

6. History of the Transition to Adult Health Care Work Group • First success – DPW Operations Memorandum • Allows a period of transition whereby families can look for physician in adult health care, but still use their pediatrician until a successful transition to a new physician is made

7. History of the Transition to Adult Health Care Work Group • Second major issue addressed by the Transition Group: • Young people with disabilities and their families have often reported difficulty in finding a suitable adult practitioner • What will it take to increase this pool of practitioners? • Survey of adult-oriented physicians – Family Practitioners, Internists

8. History of the Transition to Adult Health Care Work Group • Process used to develop the survey • Meetings, many phone calls and e-mails • Eventual meeting of the minds • Support of the PA Academy of Family Physicians, PA Chapter of the American College of Physicians and the PA Chapter of the American Academy of Pediatrics

9. Transition Story: www.chop.edu/ar

10. REACH Rapport, Empowerment, Advocacy through Connections and Health A program for teens and young adults (ages 12 to 22) with special healthcare needs created by teens and young adults with special healthcare needs. Supported by a grant from the Dept. of Health & Human Services, Health Resources & Services Administration, Maternal Child Health Bureau, MCH Grant T73MC00051,

11. Vision - 2003 REACH will locate, help to develop, and establish comprehensive, collaborative adult- oriented healthcare and community services for young adults with special healthcare needs that encourages and supports independence and well- being.

12. 72% Patient and/or family unwilling to transition 71% Adult providers lack experience 68% Not enough adult providers 62% Patient Seen by Multiple Providers (Fragmentation of care and communication) No! Barriers to Successful Transition 12 Beth Goldberg, LEND Research 2008

13. Results: Participant Report on Health Care Skills

14. Resources for Youth Transition Develop mechanisms to support youth transitioning from pediatric to adult-oriented health and social service systems www.chop.edu/transtiontoadulthood Identify resources and collaborative linkages of service providers at the local, regional, and national level who support transition Community Resources for Families www.chop.edu/crf

15. Transition Materials www.chop.edu/transitiontoadulthood

16. Care Binder for Young Adults • Medical tab • Discharge instructions, medication log, appointment logs, immunization records, visit summaries, HIPAA/medical release forms, radiology test results, etc. • Family tab • Family information and family health history • Education/Therapies/Community Resources tab • Community Resources, Speech, Occupational Therapy and Physical Therapy, Audiology, etc. names and reports, Individualized Education Program (IEP/Special Education), 504 Plan

17. Care Binder for Young Adults • Daily Routines tab • Daily care schedules, personal hygiene, social experiences, behavior management, child care service providers, respite care, transition planning • Insurance, Legal and Financial tab • Insurance/financial information, life planning checklist, wills and estate plans, trusts • For pages in English and Spanish • www.chop.edu/transitiontoadulthood Create your own binder • Acknowledgement: Care Notebook pages adapted with permission, • Seattle Children’s and the Washington State Department of Health, 2009

18. Survey of Adult Providers • Focus was on Bucks, Chester, Delaware, Montgomery and Philadelphia Counties • A list was obtained of providers that participated with Managed Medicaid • Survey was initially emailed to any practice that had an email list provided • Other practices had the survey faxed to them

19. Survey of Adult Providers • Initial returns were low • Very few practices accessed the survey with the link emailed to them • A somewhat larger group responded via the faxed survey • Next steps included a staff person calling practices then faxing another copy of the survey to them

20. Survey of Adult Providers • Focus also was on getting surveys returned from various geographic locations so that a fair representation completed the survey • After 4 months of dissemination a total of 95 surveys were completed across the 5 counties

23. Survey Results • 95% accept Medicaid, 80% of those have open panels • 86% are handicapped accessible • 95% DO NOT have a wheelchair scale • 74% DO NOT have an exam table that raises and lowers • 96% have evening hours • 45% have weekend hours

24. Survey Results • 48% make home visits • 78% DO NOT have patient/consumer or family partners • 47 % report utilizing community resources such as Diabetic training and the VNA • 62% DO NOT work with the Special Needs Units (SNU) at the Medicaid MCO’s

25. Survey Results • 72% are familiar with the concept of Medical Home • 52% use care plans • 53% have a registry of patients with chronic conditions or special health care needs • 95% will accept new patients with chronic conditions

26. Survey Results • Supports needed to care for this population: • 51% need more staff • 66% need better access to specialists • 63% need enhanced reimbursement • 34% require additional training • 34% prefer CME opportunities • 60% would like more info on community resources

27. Challenges

28. Implications • Transition is a significant issue • Work is not done • Title V Priority Area • Continue workgroup and committee • Ultimate Goal-Directory of Providers • Take home message—you can do this!

29. Next Steps • Roll out Survey statewide • “Test the Opps Memo” in the field • Need for Education/Technical Assistance • Funding • Need parent and youth input

30. Conclusion • If you know an adult provider in your community that you think would complete the survey, please provide the practice name and phone or email information to: • Molly Gatto • mgatto@paaap.org • 484 446-3039

31. Thank you!