2. Health Care Transition iTransition-Health: Self-Management Skills for Health Care THE G OVERNOR ’ S I NTERAGENCY T RANSITION C OUNCIL FOR Y OUTH WITH D ISABILITIES November 16, 2013 Maryland Department of Health and Mental Hygiene Prevention and Health Promotion Administration Antoinette W. Coward, MS, MCHES Health Care Transition Coordinator Office for Genetics and People with Special Health Care Needs

3. Prevention and Health Promotion Administration 11/16/2013 2 MISSION AND VISION MISSION The mission of the Prevention and Health Promotion Administration is to protect, promote and improve the health and well-being of all Marylanders and their families through provision of public health leadership and through community-based public health efforts in partnership with local health departments, providers, community based organizations, and public and private sector agencies, giving special attention to at-risk and vulnerable populations. VISION The Prevention and Health Promotion Administration envisions a future in which all Marylanders and their families enjoy optimal health and well-being.

4. Prevention and Health Promotion Administration 11/16/2013 3 iTransition-Health MISSION The mission of the Office for Genetics and People with Special Health Care Needs’ Health Care Transition Program (iTransition-Health) is to promote and improve health care transition services for Maryland youth and young adults with special health care needs (12 to 26 years old). VISION The Health Care Transition Program envisions a future in which Maryland youth and young adults with special health care needs in partnership with their families and providers has established health care transition plans leading to continuous health care access.

5. Prevention and Health Promotion Administration 11/16/2013 4 INFORMATION WE’LL COVER Health Care Transition Increasing Youth Involvement in Managing Health and Wellness Resources to Support Health Care Transition

6. Prevention and Health Promotion Administration 11/16/2013 5 HEALTH CARE TRANSITION Health care transition is helping young people with special health care needs plan their move from the child-centered health care system to the adult-centered health care system. Some ways that this is done include: Current doctors and health care providers discussing changing health care needs as youth become adults and eventually see adult providers Doctors, other health care providers, and families encouraging youth development toward self-management skills and knowledge Families, youth, and providers working together on a written Transition Plan(s)

7. Prevention and Health Promotion Administration 11/16/2013 6 DEFINITION FOR CSHCN Children with Special Health Care Needs (CSHCN) are children; children who happen to need extra care Who have or are at increased risk for chronic physical, developmental, behavioral, or emotional conditions Who require health and related services of a type or amount beyond that required by children generally Maternal and Child Health Bureau, US Department of Health and Human Services, (Cooperative Agreement MCU-06 MCP1), July 1,1998

8. Prevention and Health Promotion Administration 11/16/2013 7 Children with Special Health Care Needs in Maryland 244,000 children have special health care needs in Maryland, which is the equivalent of enough children to fill 3.5 Baltimore Ravens Stadiums!

9. Prevention and Health Promotion Administration 11/16/2013 8 … and almost 1 in 4 households with children (23.1%) have at least one CYSHCN 18.2% have one CYSHCN 4.9% have two or more CYSHCN

10. Prevention and Health Promotion Administration 11/16/2013 9 2009/10 National Survey of Children with Special Health Care Needs Maryland Profile

11. Groups less likely to receive services necessary for a successful transition: Black YSHCN YSHCN ages 15-17 years YSHCN with emotional, behavioral or developmental issues YSHCN with inadequate insurance YSHCN without a medical home YSHCN with single mothers Maryland rank: 40 Youth Health Care Transition For YSHCN in Maryland Data Sheet Youth Health Care Transition For YSHCN in Maryland Data Sheet (data from NS-CSHCN) Youth Transition to Adulthood

12. Prevention and Health Promotion Administration 11/16/2013 11 HEALTH TRANSITION SURVEY AREAS

13. Prevention and Health Promotion Administration 11/16/2013 12 2012 MARYLAND TRANSITIONING YOUTH PARENT SURVEY Almost 49% of YSHCN families report having participated in some type of transition planning for their child; of these: 72% participated in transition planning through their child’s IEP only 2.7% participated in health care transition planning only and 25% participated in transition planning through their child’s IEP and also participated in health care transition planning

14. Prevention and Health Promotion Administration 11/16/2013 13 TRANSITION PLANNING Developing a transition plan for YSHCN is an important tool in the process of moving to adulthood Including health care in the transition plan, or developing a separate health care transition plan with care providers, is crucial. Health care transition planning should be done by youth, families, and providers.

15. Prevention and Health Promotion Administration 11/16/2013 14 INDEPENDENCE WITH SUPPORT Health and WelIness 101: The Basic Skills to support independence: Knowledge of Health Issues/Diagnosis Being Prepared Taking Charge After Age 18 Skills Source: Got Transition?

16. Prevention and Health Promotion Administration 11/16/2013 15 INDEPENDENCE WITH SUPPORT If possible, teens and young adult should be able to: Understand their own condition and the treatment or intervention needed – “I have cerebral palsy because I lost oxygen at birth… I need help with…” Explain their condition and needed treatment or intervention to others – “I am on three medications for spasticity.” Source: Transition to Adult Health Care: A Training Guide in Two Parts. Waisman Center, University of Wisconsin-Madison

17. Prevention and Health Promotion Administration 11/16/2013 16 INDEPENDENCE WITH SUPPORT Monitor their health status on an ongoing basis – “I use my communication device to let others know how I am feeling.” Ask for guidance from their pediatric health care providers on how and when to make the move from pediatrics to adult care – “I’m going to ask my pediatrician- when should I start seeing a family practice doctor for my general care instead of a pediatrician?” Source: Transition to Adult Health Care: A Training Guide in Two Parts. Waisman Center, University of Wisconsin-Madison

18. Prevention and Health Promotion Administration 11/16/2013 17 INDEPENDENCE WITH SUPPORT Learn about the systems (and the importance of them) that will apply to them as adults, such as health insurance, social security and other programs; as well as issues like guardianship and power of attorney for health care – “I have applied for medical assistance through Social Security for now because I have a disability and I need to be able to get medical Source: Transition to Adult Health Care: A Training Guide in Two Parts. Waisman Center, University of Wisconsin-Madison

19. Prevention and Health Promotion Administration 11/16/2013 18 INDEPENDENCE WITH SUPPORT Identify both formal and informal advocacy services and supports they may need in order to be as independent as possible while at the same time using trusted advisors and mentors – “I ask my parents for advice because they have known my medical care the longest.” Remember to Reward Efforts! Source: Transition to Adult Health Care: A Training Guide in Two Parts. Waisman Center, University of Wisconsin-Madison

20. Prevention and Health Promotion Administration 11/16/2013 19 Start small. Start slow. Start now! How do you prepare your teens to meet the challenges of adult health care? By using ordinary, every day teaching opportunities and lots of practice. “Just because a thing is inconceivable doesn’t mean it’s impossible.” – Lewis Carroll Source: Transition to Adult Health Care: A Training Guide in Two Parts. Waisman Center, University of Wisconsin-Madison

21. Prevention and Health Promotion Administration 11/16/2013 20 Compare your answers with your family. They might be surprised what you know or what you want to learn. Work on a plan to increase your health care skills. Share with the medical team the skills that you are working on. It takes time and practice to learn and demonstrate these skills. Best time to start, is today! www.gottransition.org

22. Yes I do this I want to do this I need to learn how Someone else will have to do this - Who? 3. My child knows his/her health and wellness baseline (pulse, respiration rate, elimination habits) 4. My child knows health symptoms that need quick medical attention. 5. My child knows what to do in case he/she have a medical emergency BEING PREPARED 6. My child carries his/her health insurance card everyday 7. My child carries his/her important health information with me everyday (i.e.: medical summary, including medical diagnosis, list of medications, allergy info., doctor’s numbers, drug store number, etc.)

23. TAKING CHARGE Yes I do this I want to do this I need to learn how Someone else will have to do this - Who? 8. My child calls for his/her my own doctor appointments. 9. My child knows he/she has an option to see the doctor by him/herself. 10. Before a doctor’s appointment my child prepares written questions to ask. 11. My child track his/her own appointments & prescription refills expiration dates. 12. My child calls in his/her own prescriptions refills.

24. Yes I do this I want to do this I need to learn how Someone else will have to do this - Who? 13. My child has a part in filing medical records and receipts at home. 14. My child pays for the co-pays for medical visits. 15. My child co-signs the “permission for medical treatment” form (with or without signature stamp) or can direct others to do so). 16. My child helps monitor his/her medical equipment so it’s in good working condition (daily and routine maintenance).

25. AFTER AGE 18 Yes I do this I want to do this I need to learn how Someone else will have to do this - Who? 17. My child and our family have a plan so he/she can keep my healthcare insurance after turning 18 and 26. 18. My child will be prepared to sign his/her own medical forms (HIPAA, permission for treatment, release of records) 19. My child and our family have discussed and plan to develop a legal Power of Attorney for health care decisions in the event health changes and he/she is unable to make decisions for them self. (Everyone in the family should have one!)

26. Prevention and Health Promotion Administration 11/16/2013 25 RESOURCES FOR YOUTH AND YOUNG ADULTS

28. “Youth2YoungAdult” Care Notebook “Youth2YoungAdult” Care Notebook http://cshcn.org/planning-record-keeping/teen-care- notebook http://cshcn.org/planning-record-keeping/teen-care- notebook This resource is on the flash drive bracelets you received today. It can help youth/ young adults manage aspects of their own health care. It contains pre-made, fillable forms for: Medications Appointment Logs Care Schedule Home Care Providers Hospital Information Insurance/Funding Sources form Equipment and Supplies List And more!

29. http://healthytransitionsny.org/skills_media/tool_showhttp://healthytransitionsny.org/skills_media/tool_show or google “Healthy Transitions New York”

30. CIRCLE OF SUPPORT VIDEO http://healthytransitionsny.org/skills_media/tool_showhttp://healthytransitionsny.org/skills_media/tool_show or google “Healthy Transitions New York”

31. SCHEDULING AN APPOINTMENT http://healthytransitionsny.org/skills_media/tool_showhttp://healthytransitionsny.org/skills_media/tool_show or google “Healthy Transitions New York”

32. MyMedSchedule.com https://secure.medactionplan.com/mymedschedule/index.htm

33. Maryland Transitioning Youth http://www.mdtransition.org/http://www.mdtransition.org/

34. Prevention and Health Promotion Administration 11/16/2013 33 RESOURCES FOR PARENTS, FAMILIES AND CAREGIVERS

35. My Heath Care Notebook My Heath Care Notebook http://fha.dhmh.maryland.gov/genetics/SitePages/care_notebook.aspx http://fha.dhmh.maryland.gov/genetics/SitePages/care_notebook.aspx This resource is also on the flash drive bracelets you received today. It can help parents manage aspects of their child and or youth’s health care. It contains pre-made, fillable forms

36. Maryland Children and Youth with Special Health Care Needs Resource Locator http://specialneeds.dhmh.maryland.govhttp://specialneeds.dhmh.maryland.gov

37. http://www.gottransition.org/families-information or google “Got Transition?”http://www.gottransition.org/families-information

39. Transition to Adult Health Care: A Training Guide in Two Parts http://www.waisman.wisc.edu/wrc/pdf/pubs/TAHC.pdf http://www.waisman.wisc.edu/wrc/pdf/pubs/TAHC.pdf

40. http://new.dhh.louisiana.gov/assets/docs/OCDD/publications/EmergencyPreparednes sTheTakeandGoEmergencyBook.pdf

41. Prevention and Health Promotion Administration 11/16/2013 40 RESOURCES FOR PROVIDERS

42. http://www.gottransition.org/provider-information OR google “Got Transition?”

44. Prevention and Health Promotion Administration [Date] 43 http://www.gottransition.org/6-core-Elements-Tablehttp://www.gottransition.org/6-core-Elements-Table or google “Got Transition?” Six Core Elements of Health Care Transition http://www.gottransition.org/6-core-Elements-Table Pediatric Health Care Setting 1. Transition Policy 2. Transitioning Youth Registry 3. Transition Preparation 4. Transition Planning 5. Transition and Transfer of Care 6. Transition Completion Adult Health Care Setting 1. Young Adult Privacy and Consent 2. Young Adult Patient Registry 3. Transition Preparation 4. Transition Planning 5. Transition and Transfer of Care 6. Transition Completion

46. http://www.gottransition.org/UploadedFiles/Files/HCTClinicalReporteversion27June2 011.pdfhttp://www.gottransition.org/UploadedFiles/Files/HCTClinicalReporteversion27June2 011.pdf Supporting the Health Care Transition from Adolescence to Adulthood in the Medical Home

47. Health Care Transition AlgorithmPayment for Health Care TransitionWork For YSHCN who require periodic chronic condition management (CCM) visits, health care transition (HCT) planning and preparation are to be included in these visits – can be billed using CPT codes 99214 or 99215 (prolonged encounter codes); For care plan oversight billing (provider activities that take place outside of office encounters with the patient – i.e. phone calls to prospective adult providers, conversations with the youth and family regarding transition plans, or communicating with community agencies involved in the youth’s transition) use care plan oversight CPT codes 99374 (15-29 minutes) or 99375 (≥30 minutes) Source: Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home. Pediatrics 2011; 128; 182. http://pediatrics.aappublications.org/content/128/1/182.full.html

48. Sample Health Care Transition Action Plan http://www.gottransition.org/UploadedFiles/Files/4.1_Transition_Action_Plan.pdf - Link to document

49. Prevention and Health Promotion Administration 11/16/2013 48 Prevention and Health Promotion Administration Antoinette W. Coward antoinette.coward@maryland.gov 410-767-5602 http://phpa.dhmh.maryland.gov/

50. http://phpa.dhmh.maryland.gov Prevention and Health Promotion Administration [Date] 49 Prevention and Health Promotion Administration