1. Got Healthcare? Self-Management Skills for Health Care Antoinette W. Coward, M.S., M.C.H.E.S. Health Care Transition Coordinator Office for Genetics and People with Special Health Care Needs Maryland Department of Health and Mental Hygiene

2. We’ll talk about: Health Care Transition: Being Healthy Self-Management Skills for Health Care – New responsibilities – Practicing independence – Taking charge Resources and Agencies to Support Transition

3. Ground Rules LISTEN when someone else is talking RESPECT each other SHARE ONLY WHAT YOU FEEL is OK ASK for HELP as needed

4. Health Care Transition is: 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 and other health care providers encourage youth development toward self-management skills and knowledge – Families, youth, and providers working together on a written Transition Plan(s)

5. Some quick facts… Many Maryland families report that their YSHCN do not receive the services they need to successfully transition to health care, work, and independence. – In 2009-10 only 36.8 %; Maryland ranked 40 th (NS-CSHCN) YSHCN ages 12-17 whose families report that…Maryland %Nation % Needed, but doctors and other health care providers have not discussed eventually seeing providers who treat adults 21.817.4 Needed, but doctors and other health care providers have discussed youth’s health care needs as he/she becomes an adult 26.130.9 doctors and other health care providers usually or always encourage development of self- management skills and knowledge 78.878.0

6. 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.

7. Health Care Transition and Insurance Maintaining and/or finding health insurance is an important consideration in health care transition. Talk with your benefits counselor, MCO Special Needs Coordinator, or membership services for specific information about insurance plans as youth become adults.

8. Medicaid Disabilities offer a pathway to Medicaid eligibility in many states and the Children’s Health Insurance Program (CHIP) is specifically intended to cover uninsured children, including CYSHCN. States are required under the Affordable Care Act (ACA) to increase their income eligibility for Medicaid to individuals under age 65 by January 1, 2014. MCO Hotline: 1-800-284-4510

9. Health Care Reform and Transition Youth can remain on your parents insurance until age 26. The parent’s plan must offer dependent coverage and the parent must enroll in a family or dependent plan; Insurance company can not deny coverage for a pre-existing health condition.

10. Questions for Potential Adult Health Care Providers Do you take my (or my child’s) insurance? At what age do you start accepting patients? Are you familiar with my (or my child’s) condition? Are you accepting new patients? What is the average wait time for an appointment? Is your office accessible for people with disabilities?

11. Family and Cultural Values to Help with Transition Respecting your family and cultural values Timeframes for when young people start to take more responsibility for their own care varies in different families and cultures

12. Successful transition means that... Young people are able to: Access health services independently Discuss their health condition Communicate their health care needs Self-manage their care or support is available Feel comfortable seeing the doctor alone Make health care decisions or support is in place

13. Successful transition means that... Young people: Have insurance Have health care that is age appropriate Have only as much support as necessary because parents have to let go, too

15. Health Care Transition Resources for Youth Teen Care Notebook http://cshcn.org/planning-record-keeping/teen-care-notebook The Youthhood http://www.youthhood.org/ Got Transition? http://www.gottransition.org/youth-information Healthy Transitions http://healthytransitionsny.org/skills_media/tool_show My Med Schedule http://www.mymedschedule.com/

16. Teen Care Notebook Teen 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!

17. http://www.youthhood.org/health/index.asp or google “youthhood”

19. http://www.gottransition.org/youth-resourceshttp://www.gottransition.org/youth-resources or google “Got Transition?”

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

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

23. Transition Resources for Parents and Families My Health Care Notebook http://fha.dhmh.maryland.gov/genetics/SitePages/care_notebo ok.aspx Got Transition http://www.gottransition.org/families-information Transition to Adult Health Care: A Training Guide in Two Parts http://www.waisman.wisc.edu/wrc/pdf/pubs/TAHC.pdf

24. 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

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

27. Transition Resources for Providers National Health Care Transition Center: Got Transition http://www.gottransition.org/providers-best-practices Supporting the Health Care Transition from Adolescence to Adulthood in the Medical Home http://www.gottransition.org/UploadedFiles/Files/HCTClini calReporteversion27June2011.pdfhttp://www.gottransition.org/UploadedFiles/Files/HCTClini calReporteversion27June2011.pdf“

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

29. Sample Health Care Transition Plan to Use with Your Physician Sample Health Care Transition Plan to Use with Your Physician http://www.gottransition.org/UploadedFiles/Files/4.1_Transition_Action_Plan.pdf - Link to document

30. Agencies to Support Health Care Transition Maryland Department of Health and Mental Hygiene (DHMH) OGPSHCN: Provides services for children and youth with special health care needs. (http://fha.dhmh.maryland.gov/genetics)http://fha.dhmh.maryland.gov/genetics Maryland Department of Disabilities (MDoD) and Governor's Interagency Transition Council for Youth with Disabilities (IATC): Advances the rights and interests of people with disabilities so they may fully participate in their communities. (http://www.mdtransition.org/)http://www.mdtransition.org/

31. Agencies to Support Health Care Transition Maryland Developmental Disability Council (DD Council): Provides leadership to ensure independence, productivity, integration, and inclusion of individuals with disabilities in the community through promotion of systems change. (http://www.md-council.org/ )http://www.md-council.org/ Maryland Medical Care Programs: Provides patient care coverage and services. (http://mmcp.dhmh.maryland.gov/SitePages/Home. aspx )http://mmcp.dhmh.maryland.gov/SitePages/Home. aspx

32. Agencies to Support Health Care Transition Maryland Center for Developmental Disabilities (MCDD): Provides programs and resources to people with disabilities and their families. (http://mcdd.kennedykrieger.org/ )http://mcdd.kennedykrieger.org/ Maryland State Department of Education (MSDE): Prepares children with disabilities to move from school to the appropriate postsecondary outcomes. (http://www.marylandpublicschools.org )http://www.marylandpublicschools.org

33. Circle of Support Resources Who helps you? – New responsibilities – Practicing Independence – Taking Charge

34. Start small. Start slow. Start now! How do you prepare teens/young adults 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

35. Questions? For questions or additional information, contact: Antoinette W. Coward Office for Genetics and Children with Special Health Care Needs at antoinette.coward@maryland.gov orantoinette.coward@maryland.gov 410-767-5602