The FINDS Survey Results: Implications for a Nation and for Virginia

1. Ann Cameron Caldwell, Ph.D. The Arc of the United States 2011 State Convention August 11, 2011 The FINDS Survey Results:Implications for a Nation and for Virginia

2. Mission Statement • The Arc promotes and protects the human and civil rights of all people with intellectual and developmental disabilities and actively supports their full inclusion and participation in all aspects of the community throughout their lifetimes.

3. “Street Cred”

4. Joe Gilliam, former coach of Football Hall of Famer Richard Dent “As far as I know, you can’t teach relentless.”

5. The Arc …. our finger is on the pulse of people with I/DD and their families

8. President Kennedy “Those of us who have seen children live in the shadows know that a country as rich as ours cannot possibly justify this neglect.”

9. Key Findings • Despite much progress, our nation is falling short in providing opportunities for people with I/DD. • Budget cuts and the economy have hurt everyone, but those with I/DD and their families among the hardest hit • Appalling wait for services that may never come. • Families are shouldering tremendous financial strain and personal stress. • The future is uncertain.

10. Services are scarce and becoming harder to find. • 62% report that services in community have been cut • 1/3rd are on waiting lists averaging 5.3 years. • 75% not satisfied with government funded services • 43% report schools are cutting back as well

11. Profile of caregiving/support

12. Types of care/support

13. Sources of funding for supports

14. Inclusive education not yet a reality. • Less than one-third are being “fully included” in schools • 4 of 10 parents are dissatisfied with the quality of education their son/daughter received.

15. 52% left high school without a diploma

16. Most aspire for more education • Learn a job related skill (73%) • Learn about things of interest (72%) • Get experience to help get a job (66%) • Have a college experience (33%) • Obtain technical degree or certificate (27%) • Obtain certificate of completion (17%) • Get travel training (16%) • Earn GED/HS diploma (14%)

17. Jobs are elusive. Preferred setting: • Regular job in the community (63%). • Sheltered workshop (19%) • Enclave setting (12%) • Self-employment (7%)

18. Types of work

19. Job Satisfaction 82% - People with IDD should be paid minimum wage even if not as productive

20. 98% live in the community.

21. Few are interested in congregate living.

22. People want to choose their own roommates

23. Widespread poverty • Reported Sources of Income • 25% have NO income • 33% receive SSI • 21% receive Social Security • Sources of Health Insurance • 60% Medicaid • 24% Medicare • 69% both

24. Tremendous financial strain and personal stress • 1 out of 5 had to quit a job to stay home • 67% unable to pursue own work & career goals • 80% report they don’t have enough money to pay for the care and support that is needed • 46% report more caregiving responsibilities than they can handle • They are physically fatigued (88%), emotionally stressed (81%) and personal relationships (72%), health (72%) and marriages (58%) are being affected.

25. “…you can’t teach relentless.”

26. Families worry • In the FINDS Survey, the majority of families (more than 60%) worry that: • their family member with I/DD might have to live somewhere they don’t want • they don’t have a plan for where the person will live • they don’t have enough information about housing options • 65% could use more help in planning • 84% report lack of retirement savings is a problem (52% a major problem)

27. Implications for Virginia • Data reflects realities families face in the State • Challenges are not unique; solutions may be • The Chapters of The Arc in Virginia are a powerful agent of change • Family support is going to be a critical piece of solutions in the future as other traditional funding sources break down

28. A Call to Action • A new and reinvigorated movement to promote and protect the rights of people with I/DD. • Recruit a million people to become part of our movement. • Establish national siblings council and self-advocates council • Clear message to Congress – don’t balance the budget on backs of people with I/DD. • Don’t Cut Our Lifeline – tell stories of importance of Medicaid

29. Make concerns an issue in the 2012 elections • Show up at town hall meetings and ask candidates what they will do • Register people to vote • Support the candidates that will support you • Create dialogue with employers and the business community • Raise public awareness • PSAs and Social Media contest