Healthy & Working: Transition Planning Resources for Health & Work!

1. Healthy & Working: Transition Planning Resources for Health & Work! Debbie Gilmer Tom Gloss Ceci Shapland HRTW National Resource Center

2. HRTW TEAM Federal Policy Patti Hackett, MEd Tom Gloss Title V Leadership Toni Wall, MPA Kathy Blomquist, RN, PhD Medical Home & Transition Richard Antonelli, MD, MS, FAAP Patience H. White, MD, MA, FAAP Betty Presler, ARNP, PhD Interagency Partnerships Debbie Gilmer, MEd HRTW University Jon Nelson, MS Family, Youth & Cultural Competence Ceci Shapland, MSN Trish Thomas HRSA/MCHB Project Officer Elizabeth McGuire

3. Resources-01 HRSA/MCHB funded National Centers (6) HEALTH & TRANSITION www.hrtw.org Healthy & Ready to Work National Resource Center 2. MEDICAL HOME www.medicalhomeinfo.org National Center on Medical Home Initiatives 3. FAMILY PARTNERSHIP www.familyvoices.org National Center on Family and Professional Partnerships

4. Resources-02 HRSA/MCHB funded National Centers (6) 4. CULTURAL COMPETENCEhttp://www11.georgetown.edu/research/gucchd/nccc/ National Center for Cultural Competence 5. HEALTH INSURANCE http://www.hdwg.org/cc/ Catalyst Center – for Improving Financing of Care for CYSHCN 6. DATAwww.cshcndata.org Data Resource Center National Survey for CSHCN

5. Everyone can work!

7. Health Affects Everything! Joe’s Story • Great job • Excellent training • Own apartment • Good social life Then what…………………….???

8. Assessing Health in Transition:Employment • Does Joe’s health condition dictate certain work conditions? • Will Joe’s medication affect his job duties? • Should he disclose his health condition to the employer? • Does his health dictate hours of work?

9. Assessing Health in Transition:Post Secondary Education • Does Joe need to take his medication while in class or at work? • How will it affect his performance? • Will Joe need accommodations in his schedule for medical treatments and/or appointments?

10. Assessing Health in Transition:Home Living Does Joe ……. • understand his seizure disorder? • carry his own emergency medical information? • understand the side effects of his medication? • have an emergency plan? • have health insurance?

11. Assessing Health in Transition:Community Life Does Joe …….. • have an adult health care practitioner? • know how to communicate his health care needs? • know when, how and where to fill a prescription? • know how to travel to the doctor or drugstore? Does he have transportation?

12. Assessing Health in Transition:Leisure-Recreation Does Joe ……. • Understand the effects of recreational drugs or alcohol on his health and seizure disorder? • Will his medication or health condition affect his choice of activities?

13. The “State of the State” of SSI

14. SSI Eligibility <18 • A child (under age 18) must meet all of the following requirements to be considered disabled and therefore eligible for SSI: • Earning less than $900 a month. • Have a physical or mental condition, or a combination of conditions, that results in “marked and severe functional limitations.” • Have a condition(s) that has lasted, or is expected to last, at least 12 months; or must be expected to result in death. • A child must meet income and resource limitations (includes the income and resources of family members living in the child’s household).

15. SSI Eligibility >18 • Adult Status at age 18. • SSA uses different medical and non-medical rules for determining disability for adults than children. • If not eligible for SSI before age 18 because of parents’ income or resources, may become eligible for SSI at age 18 as an adult. • If a child is already receiving SSI payments, SSA must review the child’s medical condition at age 18 using adult rules. Source: Benefits For Children With Disabilities (SSA Publication No. 05-10026)

16. Nationwide 9.4 million(13%) <18 Title V CYSHCN963,634(0-18*) SSI Recipients1,036,990(0-17) 386,360(13-17) Sources: www.cshcndata.org Title V Block Grant FY 2006, www.mchb.hrsa.gov * Most State Title V CSHCN Programs end at age 18 SSA, Children Receiving SSI, December 2005, www.ssa.gov Data: Children & Youth with disabilities and health needs

17. People Getting SSI Can Work! • SSA Work Incentives are special rules that make it possible for people receiving SSI to work and still receive monthly payments until they can work on a regular basis. • And, if the person cannot continue working because of his or her medical condition, benefits can start again—he or she may not have to file a new application.

18. People Getting SSI Can Work! There are extra incentives for young people who want to work. • Basic Earned income exclusion $1,510 monthly/$6,100 annual (student earnings exclusion) • Plan to Achieve Self-Support (PASS),allows a child who is age 15 or older to save some income and resources to pay for education and other things needed to be able to work. • Impairment Related Work Expenses (such as a wheelchair or a personal assistant)

19. People Getting SSI Can Work! • A child older than age 15 may get help with rehabilitation and training. • Medicaid coverage will continue even if the child’s earnings are high enough to stop the monthly SSI payment, as long as the earnings are under a certain amount. Source: Working While Disabled—How We Can Help (SSA Publication No. 05-10095).

20. People Getting SSI Can Work! Ticket to Work- VR, training, job referrals and other employment support services free of charge. - No medical reviews while using the ticket. - Different rules for children and adults. More info: Ticket to Work program 1-866-968-7842 toll-free / TTY 1-866-833-2967 SSA: 1-800-772-1213 - ask for Your Ticket To Work SSA Publication No. 05-10061).

21. People Getting SSI Can Work! • Work Incentives Planning and Assistance Program (WIPA) will help answer questions about Social Security’s work incentives and help people make a decision about working. - Community work incentive coordinators can explain how work affects SSI payments and explain what other federal, state and local supports there are for people with disabilities who want to work. Locate the WIPA project 1-866-968-7842 (TTY 1-866-833-2967) www.socialsecurity.gov/work/ServiceProviders/WIPADirectory.html

22. Youth & Young Adults under 18 3,314 1.0% 18-21 32,658 9.7% 22-29 79,819 23.7% PASSIRWEBWE National total 1,582 6,310 2,552 under 18 3 4 5 18-21 65 312 111 22-29 321 2,042 619 SOURCE: SSA, SSI Disabled Recipients Who Work, 2005 SSI Recipients Who Work: 18-29

23. Maintaining access to health insurance

24. Transition & ……Insurance NO HEALTH INSURANCE 40% college graduates (first year after grad) 1/2 of HS grads who don’t go to college 40% age 19–29, uninsured during the year 2x rate for adults ages 30-64 SOURCE: Commonwealth Fund 2003

25. PUBLIC: Medicaid MAINTAIN MEDICAID - Passed SSI Re-determination – con’t benefits. DROP FROM MEDICAID - Former childhood SSI recipient at age 18 did not qualify under SSI re-determination and loses benefits (income too high or does not meet disability criteria.) NEW to MEDICAID • Child did not qualify for SSI under 18 due to family income. Age 18 may qualify for SSI and Medicaid as an adult single head of household.

26. PUBLIC: Medicaid & SSI Connection <18 Gather medical & other evidence 18 Redetermination (based on adult standards) 18-22 Adult Student Section 432 of the Social Security Protection Act extended the student earned income exclusion (SEIE) to any individual under the age of 22 regularly attending school, college, or training designed to prepare him/her for a paying job, this includes students who have IEPs. https://s044a90.ssa.gov/apps10/poms.nsf/lnx/0500501020

27. Medicaid while Working WORKING - Continued Medicaid Eligibility Section 1619(b) - still meets SSI criteria, - needs Medicaid in order to work; and • gross earned income is insufficient to pay for other public supports. MEDICAID BUY-IN via TICKET TO WORK - Worker could opt to buy-in and receive Medicaid benefits. Program is too new to assess if states are providing full benefit packages and at what level of sliding fee.

28. PRIVATE: Family, Employer or Solo MAINTAIN BENEFITS via FAMILY PLAN • Adult Disabled DependentChild • Student Status • NJ extends age of coverage for ALL young adults to age 30 (childless) Pays for health care benefits plan through: • College - student plan • Employed - group plan • Self-pay: single plan • Ticket to Work (Medicaid Buy-in) • COBRA

29. Tips and tools for supporting youth in the transition from school to work

30. Health Affects Everything!! • Employment • Housing • School • Community Living • Recreation

31. What Is Transition? Transition is the deliberate, coordinated provision of developmentally appropriate and culturally competent health assessments, counseling, and referrals. To ensure successful transition to • Adult health care system • Work • Independence • Inclusion in community life • Start Early

32. Goal of Transition Improve the health-related quality of life of all young people with chronic illness or disability and enable them to reach their true potential.

33. Goal of Transition To grow up healthy and able to fully participate and enjoy life!

34. Health Impacts Performance & Productivity Success in the classroom, within the community, and on the job requires that young people are healthy. To stay healthy, young people need an understanding of their health and to participate in their health care decisionsor identify the appropriate supports.

35. The Ultimate Outcome: Transition to Adulthood Health Care Transition Requires Time & Skills for children, youth, families and their Doctors too!

36. And the transition from pediatric to adult health care

37. Youth are Talking: Are We Listening? Experiences that were most important: • learning to stay healthy • getting health insurance SOURCE: National Youth Leadership Network Survey-2001, 300 youth leaders disabilities

38. What is a successful transition? Youth are able to • Access health services independently • Discuss their health condition • Communicate their health care needs • Self-manage their care or support is available

39. What is a successful transition? Youth are able to • Feel comfortable seeing the doctor alone • Make health care decisions or support is in place Young adults • Have insurance • Have health care that is developmentally appropriate – primary, specialty, therapies, AT

40. What is health and wellness for a youth with special health care needs? Balancing Health & Work

41. Partner with Youth and Families • Talk about health in relation to learning and employment • Promote participation in health care and decisions • Include the school nurse more actively in the IEP

42. Partner with Health Professionals • Everyone has the same goal: promoting optimal potential • Think health! • Transition is about community partners: Partner with primary physician, school nurse, etc

43. Transition & …. Health Care

44. Resources available through the HRTW National Resource Center

45. www.hrtw.org

46. Transition to Adulthood