Patti Hackett , M.Ed. Co-Director HRTW National Resource Center Bangor, ME

1. CYSHCN transitioning to adulthood Employment: Opportunities & Options skills, supports, incentives, landmines Patti Hackett, M.Ed.Co-DirectorHRTW National Resource CenterBangor, ME Family Voices of California Bi-Annual Parent Health Liaison Conference January 7, 2008 Sierra Health Foundation, Sacramento

2. Do you have “ICE” in your cell phone contact list? To Program………. • Create new contact • Space or Underscore ____ • (this bumps listing to the top) • Type “ICE – 01” • – ADD Name of Person • - include all ph #s • - Note your allergies • You can have up to 3 ICE contacts (per EMS)

4. Growing Up Ready to LIVE! Health & Wellness + Humor

5. 20 min –Just the Facts • Affirm • Ah ha! • Squirm • Disagree Who You Are? Experts in the Room About me!

6. What would you think a group of “successful” adults with disabilities would say is the most important factor that assisted them in being successful?

7. FACTORS ASSOCIATED WITH RESILIENCE for youth with disabilities: Which is MOST important? • Self-perception as not “handicapped” • Involvement with household chores • Having a network of friends • Having non-disabled and disabled friends • Family and peer support • Parental support w/out over protectiveness Source: Weiner, 1992

8. FACTORS ASSOCIATED WITH RESILIENCE for youth with disabilities: Which is MOST important? • Self-perception as not “handicapped” • Involvement with household chores • Having a network of friends • Having non-disabled and disabled friends • Family and peer support • Parental support w/out over protectiveness Source: Weiner, 1992

9. What would you do, if you thought you could not fail?

10. Friends Self-Esteem Why do people with disabilities work? Money Why Do People Work?

11. Events that shaped vocational services for people with disabilities 1918 VR Programs Established 1940’s People with disabilities included in VR 1950’s Advocacy by parents for services 1960’s Civil Rights & President’s Committee on Mental Retardation Normalization, Rehabilitation Act of 1973, “Try Another Way”, Demonstration Projects, PL: 94-142 Education for All Handicapped Children Act 1970’s 1980’s State-wide Systems Change Projects, Rehab Act provided SE $ 1990’s ADA Passed, Rehab Act Amended Present

12. TIPS: Navigating & Documenting 1. Celebrate the Paperwork! Prepare the medical and other evidence 2. Practice (coach, try, solo) Talking, Decision Making, Consequences 3. 18 yrs to learn, be ready, launch, support 4. Circle of Support, identify, they too practice 5. No retirement plan for family

13. Habits: Good and Bad • Appearance Look good, smell good, act good 2. Attendance On time (no excuses), low sick days • Friends, Bosses Understand the “line” 4. Sexuality no on off switch, time and place

14. Just the Facts Definitions & Data SSI, VR, Medicaid Work Incentives Insurance What to Do What By When Resources

15. Health Impacts All Aspects of Life 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 decisions.

16. 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

17. Title V Block Grant: National Performance Measure #6 Transition to Adulthood Youth with special health care needs will receive the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence. (2002)

18. According to a 2004 Louis Harris Poll EMPLOYED • 35% of people with disabilities reported • 78% of those who do not have disabilities POVERTY & EDUCATION • 3 x people with disabilities live in poverty annual household incomes below $15,000 (26% versus 9%) • 2 x drop out of high school (21% versus 10%)

19. SSI – Under 18, Over 18- Whose Working SSI under 18 99,711non citizens 567 SSI 18- 64 46,849Other blind and disabled 32,837 SSI who work > 18 1619 a - 4,067 1619 b - 9,945 Work Incentives 16-64 PASS - 371 IWRE - 366 BWE - 391 Source: SSI Annual Statistical Report, 2006

20. Supported Employment RulesRehabilitation Act Supported Employment = competitive work in integrated work settings consistent with the individual’s informed choice for those with the most significant disabilities.

21. Rehab. Act Defines • Eligibility • SE is for people with “significant disabilities” • All people can work in SE with supports • Have not worked or only intermittently worked in competitive employment • SE Services • achieve competitive employment • based on needs of individual

22. Supported Employment Supported employment (SE) enables people with disabilities who have not been successfully employed to work and contribute to society. SE focuses on a person's abilities and provides the supports the individual needs to be successful on a long-term basis.

23. Supported employment (SE) enables people with disabilities who have not been successfully employed to work and contribute to society. SE focuses on a person's abilities and provides the supports the individual needs to be successful on a long-term basis. It allows people experiencing disabilities, their families, businesses, and their communities to experience the successes of people with disabilities. The partnership that SE has established between individuals experiencing disabilities and their communities is having a lasting impact on the way the public perceives people with disabilities. SE affords the public the opportunity to see the person for who they are rather than seeing the disability.

24. Supported Employment • Competitive work in integrated settings • Most severe disabilities • Competitive employment has not traditionally occurred • Interrupted or intermittent due to severe disability • Need intensive support services or extended services to perform work SOURCE: Federal Register

25. Supported Employment • Person Centered Career Planning • Direct Assistance with the Job Search • Employer Education • On the Job Support • Proactive Job Retention Services • Referral to Other Services

26. Real Work for Real Pay by Edited by Paul Wehman, Ph.D., Katherine J. Inge, Ph.D., W. Grant Revell, Jr., & Valerie A. Brooke This groundbreaking text advances a critical element of empowerment for people with disabilities: inclusive, competitive, and meaningful employment opportunities. authoritative collection of current best practices, employment theories and policies, and specific tools that support positive change in the workplace.

27. WORK ACCOMMODATIONS & SUPPORTS • Job Coach • Mentor • Systematic instruction • Reinforcement program • Ongoing mentor support

28. Workplace Supports Environmental supports physical structures, surroundings, or objects present in the business that make the job site more accessible for current or future employees. i.e. automatic door openers , signage on the walls

29. Workplace Supports Procedural supports actions or activities that employers provide to assist potential or current employees with performing their jobs and job related functions. i.e. flextime may be offered to allow employees to work within the hours that are more conducive to their personal lives.

30. Workplace Supports Natural supports exist in any workplace and are informal supports that are typically available to any employee. This might include worker's sharing rides to and from work, a senior staff member helping a new co-worker get the job done when he/she needs extra assistance.

31. National APSE APSE: The Network on Employment is a membership organization formed in 1988 as the Association for Persons in Supported Employment to improve and expand integrated employment opportunities, services, and outcomes for persons experiencing disabilities. 19th Annual National Conference July 9 - 11, 2008 Marriott Louisville Downtown Louisville, KY www.apse.org

32. Mobile Work Crew • 8 or fewer workers • Trainer maintains presence • Workers travel to and from site • Usually poor integration • Pay is usually from the agency

33. Enclave • 8 or fewer workers • trainer is continuous • Workers based at 1 site • Integration varies • Paid by business or agency

34. Transitional Employment • Only for persons with mental Illness • Allows multiple sequential short-term jobs • Goal is to achieve permanent employment

35. Entrepreneurial ModelBusiness or Individual • Integrated: Workers with and without disabilities are employed • ETS continuously available • Pay is equal • Can be an assessment site

36. The Goals • Good Pay • Health care benefits • Control over job selection/work conditions • Upward mobility • Improving social and community connections and integration

37. 7 Steps To Employment • Planning • Acquisition of Skills • Retaining a Service Provider • Engaging in the Job Search • Negotiation & Acceptance of Job • Training Process • Support Process

38. 7 Parent Roles • Planner • Advocate • Role Model • Energizer • Negotiator • Trainer • Supporter

39. Factors in Job Site Analysis What do I need to consider? • Schedules • Work Hours • Travel • Potential benefits • Salaries • Promotion possibilities

40. Other considerations • Performance issues • Education • Stamina • Mobility • Decision-making • Cultural issues • Supervision • Co-worker interactions • Appearance • Behavior

42. Quality Indicator #1: Meaningful Competitive Employment • Is it an integrated work setting? • Are employees hired, supervised and paid by the business? • Are employment benefits commensurate with non-disabled coworkers?

43. Quality Indicator #2: Informed Choice, Control & Satisfaction • Who selects the job coach? • Who selects the job? • Does the new employee like the job? • Is the new employee satisfied with the service and worksupports? • Is the new employee able and willing to retain the job?

44. Quality Indicator #3 Level and Nature of Support • Do customers assist in selecting the support options? • Does the program advocate moving from the least intrusive level of support to a more intrusive support option based upon customer need? • Does the program have staff skilled in identifying, matching and fading possible workplace supports options?

45. Quality Indicator #4: Amount of Hours Worked Weekly • What percentage of program participants work in competitive employment over 30 hr/wk or under 20 hr/wk? • For those working under 30 hr/wk how many hours of alternative programming are provided. • What is the satisfaction level of participants with their hr/wk?

46. Quality Indicator #5: Well Coordinated Job Retention System • What percentage of individuals placed in competitive employment retain their jobs for less than 90 days / 90 days / 180 days over 180 days? • What is the replacement rate? • What are the reasons for job separation? • Record and schedule for monitoring job stability? • Is there identifiable extended services funding for planning and unplanned responses to retention issues?

47. Quality Indicator #6:Maximizing Integration & Community Participation • Does the company offer opportunities for physical and social integration such as common break areas / company socials? • Does the employee’s work area facilitate physical and/or social interactions? • In what activities does the customer engage in the community (friends, clubs, groups)? • Is the employee satisfied with the job and level of community integration?

48. Quality Indicator #7:Employer Satisfaction • Does the program develop business profiles complete with business culture notations and language specific to the business? • Is there staff development program that stresses the use of business friendly language? • Does the program engage in community outreach with disability awareness training? • Does the program serve as a liaison for the business and people with disabilities?

49. Just the Facts Definitions & Data SSI, VR, Medicaid Work Incentives Insurance What to Do What By When Resources

50. Just the Facts: SSI The Myth: All applications get denied first time around. The Intent: • Supplemental Security Income (SSI) 1972 Federal funded by general tax revenues (not Social Security taxes) Designed to help aged, blind, and disabled people, who have little or no income; and Provides cash to meet basic needs for food, clothing, and shelter (assets $2,000 single/$3,000 couple)