2. Pennsylvania Medical Home Initiative Educating Practices In Community Integrated Care Renee Turchi, MD, MPH – Medical Director EPIC IC Molly Gatto – Associate Program Director EPIC IC Penn State Transition Conference July 25, 2008

3. EPIC IC MISSION EPIC IC’s mission is to enhance the quality of life for CSHCN through recognition and support of families as the central caregiver for their children, effective community-based coordination, enhanced communication and improved primary health care.

4. EPIC IC practices: Participate in monthly quality improvement teleconferences Attend bi-yearly quality improvement conferences that provide networking opportunities Are provided education on identification of CYSHCN (Children and Youth with Special Health Care Needs) Parent Partner recruitment utilization of Parent Partners coding strategies time management “hot topics” like transition to adult healthcare, cultural competency, etc. How do practices participate?

5. EPIC IC Medical Home Sites Medical Home Adopter (currently active in EPIC IC) Medical Home Adopter (Achieved implementation) Medical Home Adopter (First year of implementation) Medical Home Trainee (Received Training) In recruitment Satellite office

6. Summary of EPIC IC Participation Over 62 practices have been trained in medical home principles Over 29 practices have received funding for care coordination activities Practices represent 6 regions and 30 counties in Pennsylvania Practices represent urban, suburban, and rural communities

7. Transition Efforts Host two conferences focused on transition at the practice level - Healthy and Ready to Work - Dr. Patience White - Waiver programs - Wills and Trusts - Parent/patient panels

8. Medical Home and Transition

9. Practice Transition Survey Survey administered to practices in 2005 and again in 2008 to measure growth in practice based transition efforts Patient registry utilized to inform practices of their population over age 18 Family Medical Home Survey - tracks families with child approaching transition age - tracks areas of need and successes

10. Challenges Finding adult health providers Getting support from both the parent as well as the provider to transition the youth Time to develop a transition care plan Linking youth to resources in the community

11. Practice Models Pediatric Alliance – Pittsburgh, PA Center for Children with Special Health Care Needs – Philadelphia, PA Reading Pediatrics – Reading, PA

12. Transition Activities for CYSHCN at Pediatric Alliance

13. Elizabeth M. Wertz Evans, RN, MPM, FACMPE Chief Executive Officer Pediatric Alliance, PC, Pittsburgh, PA Office: 412/278-5100 x121 E-mail: evanse@pediatricalliance.comevanse@pediatricalliance.com Web site: www.pediatricalliance.comwww.pediatricalliance.com Presented by:

14. Several Transition Initiatives: Information at Office Visit Meetings with CYSHCN and Families Meetings with Adult Physicians List Serve

15. Update Info at Check-in

16. During Well Visit...

17. List Serve Info at Check-Out

18. Partners We identified our partners...

19. Partners: CYSHCN and Their Families Pediatricians Internal Medicine Physicians Family Practice Physicians Clinical Staff Administrative Staff

20. Office Managers Meetings

21. Celebrate Success!!

22. Data Sharing: NextGen EMR Patient Provider Portal Other Physicians Families

23. SUMMARY

24. Any Questions or Further Discussion?

25. The Center for Children with Special Health Care Needs Transition Conference July, 25, 2008

26. What is our mission? To work together with families of children and youth with special health care needs to provide ongoing, comprehensive, family-centered medical care and to improve access to services, community resources and advocacy to assure that children obtain optimal support through life stages as well as promote their independence with dignity and respect.

27. The Center for Children with Special Health Care Needs Located at St. Christopher ’ s Hospital for Children Inception: 2003 Total Patients: 575 CYSHCN and 265 Siblings Staff 3 Pediatricians Nurse Care Coordinator Clinical Nurse Social Worker Office Manager Patient Service Rep

28. The Center for Children with Special Health Care Needs Transition Checklist and Evaluation Social Plan for the future Educational School, Work, Adult Day Program Financial Insurance, Waivers Medical Supplies, Nursing Services, Equipment, Medications Legal Living Will, Legal Custody Each player contributes: Medical, Caregiver, Patient

29. Philadelphia Department of Health: Community Mini-Grant Program Funding to support: Families ’ travel and parking expenses Supplies for families Food for events Stipends

30. Evaluation Results: Barriers to Transition YesNo Parental protectiveness (4)Provider protectiveness (8) Lack of adult providers familiar with CYSHCN care (4) Insurance complications (5) Lack of community resources (4) Lack of communication between agencies (3) Lack of specialists familiar with CYSHCN care (3) Lack of vocational rehab (1) Fear by young adult (1) Lack of motivation by young adult (1)

31. Community Relationships The Legal Clinic for the Disabled, Inc. Magee Rehabilitation Hospital 1513 Race Street, Philadelphia, PA 19102 215-587-3461 www.legalclinicforthedisabled.org Liberty Resources 714 Market Street, Suite 100 Philadelphia, PA 19106 215-634-6630 www.libertyresources.org

32. Contact Information The Center for Children with Special Health Care Needs 3601 ‘ A ’ Street, Philadelphia, PA 19134 o Monica Kondrad, RN, BSN 215-427-5363 o Laura Boyd, MSW 215-427-3996 o Dr. Renee Turchi, MD, MPH o Dr. Francis McNesby, MD o Dr. Alisa Hoffman, MD 215-427-8363

33. Reading Pediatrics, Inc.  13 Doctors  1 Nurse Practitioner  ~600 CYSHCN to date  4 offices  Open 365 days a year

34. The Transition Process  Gather information from parents of CYCHCN  Develop a relationship with potential adult practitioners  Utilize the Elks Home Service Program when appropriate

35. The Transition Process  Gather information from parents of CYCHCN  Develop a relationship with potential adult practitioners  Utilize the Elks Home Service Program when appropriate

36. TRANSITIONING of CYSHCN  Began as informal process  Identify patients of transition age  Develop a letter  Designate a ‘point’ person  Follow-up contact after letter sent

38. SAMPLE LETTER Dear Parent: It has been a privilege to be the primary care pediatrician for your child. All of the physicians and staff members at Reading Pediatrics take great pride in your child’s care. We have established a special relationship with you and your child. At this time we are starting the ‘transition’ phase of your child’s care to an adult physician. The physicians at Reading Pediatrics feel it is in your child’s best interest to be followed by an adult physician rather that a pediatrician. Reading Medical Group, which has offices around the county, will assist you in finding an appropriate physician. Simply call 610-988-8411 to begin the process. We ask that you start to look at your options for this transition. Our timeline for this is within the next few months. Please discuss this with your physician at your next visit. Our office will provide adequate information to your new physician. If I can be of any assistance, please contact me. Sincerely, JoAnn B. Steinmetz Practice Administrator

39. Selection of ‘POINT’ Person  Has frequent contact with the families  Understands the transition process  Personable and approachable  Good relationships with adult practitioners  Willingness to assist families during the process

40. Goals for the Future  Begin talking about transition @ age 14  Provide families with a ‘Transition Packet’  Continue developing relationships with other adult providers  Obtain feedback from families who have already transitioned  Work toward a more formal process

41. The most powerful waves begin as a single drop…..