What’s Health and Social Services Got to Do with Employment?

1. What’s Health and Social Services Got to Do with Employment? December 3, 2007 -- 1:30-3:00 eastern

2. GOALS1. Recognize health and wellness impacts performance and productivity (employment sustainability) 2. Understand the need to prepare youth for the difference between entitlement and eligibility programs and services prior to aging into adulthood.

3. GOALS 3. Strengthen connections to consumer and state based social service supports that can facilitate in maintaining or achieving full potential for self-direction, self-reliance and independent living. 4. Increase awareness of state based health supports, resources and services and mandates (private insurance)

4. Elizabeth McGuire Health Policy Analyst, HRSA/MCHB Project Officer-HRTW Initiative Rockville, MD Patience H. White, MD, MA, FAAP Medical Advisor, HRTW Center Chief Pubic Health Officer, Arthritis Foundation Washington, DC Theresa Glore, MS Title V Consultant, HRTW Center Louisville, KY Speakers – Presentation Order

5. Donene Feist Executive Director, Family Voices-North Dakota Director, Family to Family Health Information and Education Center Edgeley, ND Tom Gloss Federal Policy Consultant, HRTW Center Finksburg, MD Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME Speakers – Presentation Order

6. Transition to Adulthood Welcome from HRSA/MCHB Mandates and Initiatives Elizabeth McGuire

7. State Title V CSHCN Programs • 1935 - Congress passed the Social Security • Act, a law designed to bring some financial • and health security into the lives of America's • most vulnerable citizens. • Title V creates Children with Special Health • Care Needs (CSHCN) in every state, the • District and territory • Healthy People 2010 Objective 16-23 “Increase the proportion of States and territories that have service systems for CSHCN.”

8. Federal & National Initiatives Federal Mandates • OBRA ‘89 • MCHB National Performance Measures, 1999 • New Freedom Initiative (NFI), 2001 National Initiatives • Surgeon General’s Conference-Koop, 1984 & 1989 • Healthy People 2000 & 2010 • Consensus Statement on Health Care Transitions for YSHCN, AAP/AAFP/ACP-ASIM,2002 • Surgeon General’s “Call to Action to Improve Health & Wellness of Persons with Disabilities,” 2005

9. Who are CYSHCN ? “Childrenand YOUTH* with special health care needs are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.” * HRTW initiative has added YOUTH to CSHCN/CYSHCN since 1996. Source: McPherson, M., et al. (1998). A New Definition of Children with Special Health Care Needs. Pediatrics. 102(1);137-139.http://www.pediatrics.org/search.dtl

10. MCHB National Performance Measure #6 NPM6: To assure that CYSHCN receive the services necessary to transition to all aspects of adulthood: including, adult health care, employment, and independence.

12. There are policies and practices that support transition and health! FEDERAL:Policies become laws/mandates Often grant $$ follows STATE: Title V CSHCN Health Programs up to ages 18-21 MEDICAL: They are ALLIES! Take Home Messages:POLICY & PRACTICES

13. Transition to Adulthood It’s about Health & Wellness plus preparation Dr. Patience White

14. Health Impacts All Aspects of Life Health is a resource for life: Success in the classroom, within the community, and on the job requires that young people are healthy even if they have a disability. To stay healthy, young people need an understanding of their health and to participate in their health care decisions.

15. What is Transition? Components of successful transition Self-Determination Person Centered Planning Prep for Adult health care Work /Independence Inclusion in community life Start Early Transition is the deliberate, coordinated provision of developmentally appropriate and culturally competent health assessments, counseling, and referrals.

16. Survey - 1300 YOUTH with SHCN / disabilities Main concerns for health: What to do in an emergency, Learning to stay healthy* How to get health insurance* What could happen if condition gets worse. SOURCE: Joint survey - Minnesota Title V CSHCN Program and the PACER Center, 1995 *SOURCE: National Youth Leadership Network Survey-2001 300 youth leaders disabilities Youth are Talking: Are we listening?

17. Prepare for the Realities of Health Care Services Difference in System Practices Pediatric Services: Family Driven Adult Services: Consumer Driven The youth and family finds themselves between two medical worlds …….that often do not communicate….

19. Internal Medicine Nephrologists (n=35) Maria Ferris, MD, PhD, MPH, UNC Kidney Center

20. Health & Wellness: Being Informed “The physician’s prime responsibility is the medical management of the young person’s disease, but the outcome of this medical intervention is irrelevant unless the young person acquires the required skills to manage the disease and his/her life.” SOURCE: Ansell BM & Chamberlain MA. Clinical Rheum. 1998; 12:363-374

21. It’s not a building, house or hospital It is an approach…..providing comprehensive primary care Consensus Statement: Health Care Transition (Sept. 2001) Maintain portable medical summary Medical Home

22. Screening SECONDARY DISABILITIES -Prevention/Monitor - Mental Health - High Risk Behaviors AGING & DETERIORATION - Info long-term effects (wear & tear; Rx, health cx) - New disability issues & adjustments

23. Adolescent Employment Readiness Center (AERC) Research Results: Youth are less interested in any transition organized around medical issues and more interested in a transition to financial and social independence.13 year olds made the most improvement with least amount of resource investment.Social Work and Research, 2007

24. 2002 AERC/SSA Program: cohort selection/evaluation • 1510 fliers mailed by health insurance to social security income recipients 12 -18 years in DC Diagnosis: SSI Qualify 80% MR,LR, CP 40% co morbidity with CI (e.g. asthma, diabetes, CTD) • Measures used with age matched norms available: • Ansell-Casey Life Skills Assessment (ACLSA) both youth and Caregiver • Career Maturity Index (CMI) • Pediatric Quality of Life Scale (PQLS)-health measure

25. AERC RESULTS After 3 years in AERC program, participants receiving AERC services have: - more education - more paid work experience - more likely to leave SSI • Improved health from youth’s point of view • more likely to have an adult primary care physician ROI of program: 1 youth leaving the SSI rolls pays for 1 Year of the program! Wolf-Branigin, Schuyler, White: Research in Social Work, 2007

26. Health Affects Everything!CASE Study Joe’s Story: 19year old with DD and seizures • Volunteer job experiences • High school diploma • Own apartment • Good social life Then what…………………….???

27. 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?

28. 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? • Visit to DDS

29. 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?

30. Assessing Health in Transition: Community Life Does Joe …….. • have an adult health care practitioner/know who should be on his medical team? • know how to communicate his health care needs? Have a portable medical record? • know when, how and where to fill a prescription? • know how to travel to the doctor or drugstore? Does he have transportation?

31. 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?

32. 9 Easy steps to Plan a Successful Transition • EXPECTATIONS: Talk with child/youth/ family about expectations for the future. Think about the future in 1-2 year segments. • TEACH: Re-teach about the health condition and needed services based on changing cognitive development; develop portable medical record provide prognosis/ natural history data • OPINION: Ask the opinion of your young patients…get their ideas… respect confidentiality…be open and honest.. listen and be “askable”… involve in decision making(assent to consent, give them a sense of competence)

33. 9Easy steps to plan a Successful Transition • CHORES: Are they doing chores? Independence skills start with having responsibilities in the family • ATTENDANCE: consistent attendance at school leads to a pattern of consistent attendance on the job and likely hood of attendance to post secondary school. • PLANNING: Transition planning is key - more than a referral-clarify roles for all involved/outline developmental steps to independence in caring for their own health/ have a plan for health insurance

34. 9 Easy steps to plan a Successful Transition • PARTICIPATION: Ask about social/ leisure activities and strategize how they can participate more fully; acknowledge teen lifestyle • CAREER:Ask about volunteer opportunities in the community (keep on work developmental milestones), paid work < 20 hours/week • STAY WELL: key to being part of the action for all players

35. Transition to Adulthood Connecting State Supports & Social Services Theresa Glore

36. Living Well with a Disability

37. Outcome Realities for YSHCN • Nearly 40% cannot identify a primary care physician • 20% consider their pediatric specialist to be their “regular” physician • Primary health concerns are not being met • Fewer work opportunities, lower high school grad rates and high drop out from college • YSHCN are 3 X more likely to live on income < $15,000 • SOURCES: CHOICES Survey, 2000 and NCD Lou Harris Poll, 2000

38. Time Jan 2004

39. Societal Context for Youth without Diagnoses in Transition • Parents are more involved - dependency “Helicopter Parents” • Twixters = 18-29 • - live with their parents / not independent • - cultural shift in Western households - when • members of the nuclear family become adults, • are expected to become independent • How they describe themselves (ages 18-29) • 61% an adult • 29% entering adulthood • 10% not there yet • (Time Poll, 2004)

40. FACT: IT DOES TAKE A VILLAGE!!!! • In helping youth & young adults to • Transition, we must build a community of • Support. Our role is to: • MENTOR • EDUCATE/ “INTRODUCE” • FACILITATE ACCESS • FOLLOW-UP

41. ON THE ROAD TO INDEPENDENT LIVING, We help youth & young adults to: • Get Started-- Plan, Prepare, Act • Plan For Contingencies • Plan For The Long-term • and differentiate between resources/services • that may be needed now--but should be thought • of as only temporary

42. Community Supports for Independent Living • Independent Living Centers: Non-profit, consumer controlled, community based organizations. Services include: information & referral; independent living skills training, individual & systems advocacy, and peer counseling. http://www.ilru.org/html/publications/directory/index.html • Housing Assistance: Counseling agencies throughout the country that provide advice on renting, buying a home, credit issues, etc. http://www.hud.gov/offices/hsg/sfh/hcc/hcs.cfm • For local renting information: http://www.hud.gov/renting/local.cfm • Home energy costs (utilities): The Low-Income Home Energy Assistance Program. For a link to state/local programs go to: http://liheap.ncat.org/profiles/energyhelp.htm • Assistive Technology: Alliance for Technology Access Centers in each state http://www.ataccess.org/community/centers.lasso

43. Food Stamps: Helps low-income individuals & families to buy the food they need for good health. Residents of FL, WA and WV can apply on-line. application and local office locations for each state: http://www.fns.usda.gov/fsp/outreach/map.htm • Emergency food assistance: Food banks, pantries operate in many locations to provide emergency food assistance. Local sites - American Second Harvest http://www.secondharvest.org/get_help/ • Transportation: Often a major hurdle to employment and independent living for persons living with disabilities in both urban and rural areas. State listing of transit agencies : http://www.apta.com/links/state_local/ca.cfm • (note this is the site for California, to find your state, substitute your state’s 2 letter initials-lower case- for the ca)

44. Community Mental Health Centers: • Each state has a network of community based mental health centers. A list of state centers: http://mentalhealth.samhsa.gov/databases/ • Community Health Centers: • CHC’s provide primary health care in which you pay what you can afford, based on your income. To locate a community health centers near you, go to: http://ask.hrsa.gov/pc/

45. More INDEPENDENT LIVING resources: • Medicaid Waiver Programs such as the Home and Community Based Waiver • http://www.cms.hhs.gov/MedicaidStWaivProgDemoPGI/08_WavMap.asp • One-Stop Career Centers comprehensive employment and training services. http://www.doleta.gov/usworkforce/onestop/onestopmap.cfm

46. Adaptive Recreation Programs offered by community Parks & Recreation Departments • Reproductive Health Services offered by health departments and planned parenthood agencies • Financial management, budgeting and a number of home management courses are offered by the USDA County Extension Service

47. Volunteer opportunities are available in most communities. Two portals for locating local volunteer opportunities are: • http://volunteer.unitedway.org • http://www.pointsoflight.org/centers/find_center.cfm • Adult mentors can play a very important role in helping yschn to transition. • Girls & Boys Clubs, Big Brothers & Big Sisters www.bbbs.org and other organizations help match youth with mentors.

48. Take Home Messages:POLICY & PRACTICES • It does, in fact, take a village to support youth and young adults as they transition to independent living • Youth and young adults need help in building a community of support-- not only do they need to know what services/supports are available but also how to access them • Once they know where resources are, and how to access them, they will be better prepared to face the uncertainties that life offers

49. Take Home Messages:POLICY & PRACTICES • And always remember that because of high turnover in many government and non-profit human services agencies, every encounter with another agency is an opportunity to educate them about your program --and the role that they can play in assuring a successful transition for the CYSCHN and families they serve

50. Transition to Adulthood Allies and Health Info: Family Leadership Organizations Donene Feist