The Quality Initiative What People with Disabilities Have to Say about their quality of life

1. The Quality InitiativeWhat People with Disabilities Have to Say about their quality of life NYS Commission on Quality of Care and Advocacy for Persons with Disabilities (2009)

2. Quality InitiativeBackground • Meetings with Stakeholders • Formed a Coalition on Improving Quality of Life

3. Coalition Members • Association for Community Living (ACL) • Families Together in NYS • Mental Health Association of NYS (MHA) • Mental Health Empowerment Project (MHEP) • National Alliance on Mental Illness of NYS (NAMI) • NY Association of Psychiatric Rehabilitation Services (NYAPRS) • NYS Association of Community and Residential Agencies (NYCRA) • NYS Council for Community Behavioral Healthcare • NYS Developmental Disabilities Planning Council (DDPC) • NYS Independent Living Council (NYSILC) • NYS Rehabilitation Association • NY Visions Rehabilitation Association • Parent to Parent of NYS • The Regional Center for Independent Living (RCIL) • Self Advocacy Association of NYS (SANYS) • NYS Office of Mental Health (OMH) • NYS Office of Mental Retardation and Developmental Disabilities (OMRDD) • NYS Commission on Quality of Care and Advocacy (CQCAPD)

4. Quality InitiativeProtocols and Methodology • Focus groups • 30 focus groups • 405 people • Across disability • Statewide and Regional groups • Quality Stories • Posted on websites • Sent out to Coalition members • 43 stories collected

5. Focus Group Demographic Information • Voluntary • 259 of 405 people (64%)

6. Demographic InformationGender • Male 139 (55%) • Female 114 (45%)

7. Focus Groups Demographic InformationAge

8. Focus Group Demographic InformationType of Disability • Psychiatric 128 (51%) • Physical 94 (37%) • Developmental 69 (27%) • Sensory 39 (16%) • Other 26 (10%) *Individuals could be included in more than one category.

9. Comparison of Focus Group Demographics to NYS Census Data- Ethnicity

10. Demographic InformationEmployment • Not employed 83 (52%) • Full time 37 (23%) • Part time 29 (18%) • Volunteer 10 ( 7%)

11. Demographic InformationIncome • Under $20,000 66 (44%) • $20,000 - $39, 999 23 (15%) • $40,000 - $59,999 10 ( 6%) • $60,000 - $79,000 3 ( 2%) • Over $80,000 3 ( 2%) • Not applicable 46 (31%)

12. Demographic InformationEducation • Less than High School graduate 44 (28%)* • High School graduate 34 (22%) • Some College 32 (21%) • College graduate 27 (17%) • Master’s degree 13 ( 8%) • Vocational or trade school 5 ( 3%) • PhD, JD or some post-graduate work 2 ( 1%) *Note that one half (22) of the 44 individuals were less than 18 years old and were most likely still in school.

13. Focus Groups • 8-25 people in each group • Asked a series of questions • Open ended questions (“what does a good quality life mean to you?”) • Specific questions (what are the quality indicators and what is lacking in different areas of life such as housing, employment, education, transportation, etc.)

14. Focus Groups Conducted • Coalition for the Homeless • Coalition of the Institutionalized, Aged and Disabled (CIAD) • Developmental Disabilities Planning Council (DDPC)- Consumer Caucus • Families Together in NYS • Families Together -Youth Power • Harlem Independent Living Center • Independence Foundation • Mental Health Empowerment Project (MHEP) • National Alliance on Mental Illness (NAMI) • National Technical Institute for the Deaf (NTID) • NYS Independent Living Council (NYSILC) • NY Visions Rehabilitation Association • OMH Recipient Affairs Committee (RAC) • Parent to Parent of NYS • Regional Center for Independent Living • Self Advocacy Association of NYS (SANYS) • West Side Federation for Senior and Supportive Housing (WSFSSH)

15. Focus Groups11 Areas of Life • Housing • Transportation • Education • Employment • Community Participation • Health • Leisure and Recreation • Spirituality • Personal Relationships • Technology • Political Participation

16. Other Areas Identified by Participants • Hopes and aspirations • Financial security • Services related issues • Stigma • Accessibility (not related to a life area) • Government oversight

17. Housing “Housing equals home.”

18. Top 3 Issues Housing • Having Good Quality (clean, safe, well-maintained) • Having Choice and Availability • Being Able to Live as Independently as Possible

19. Transportation “To be included, you must have transportation.”

20. Top 3 IssuesTransportation • Affordability and Availability • Accessibility • Paratransit Services (i.e. Access-a-Ride, STAR, Lift line)

21. Education “ IEP [Individualized Education Program] that means something and is not just a golden sticker.”

22. Top 3 IssuesEducation • The Ability to get Assistance, Supports and Funding • The Ability to get a Quality Education Based on Abilities/Needs • The Ability to Pursue Dreams and Goals

23. Employment “Give us alternative career opportunities to food, filth, filing, folding and flowers. Ask a person what job they want and plan a goal to get there.”

24. Top 3 IssuesEmployment • Meaningful Work, including Salary, Benefits and Vacation • Choice of Jobs and Hours of Work • Supports to get a Job you Want

25. Health “Doctors are afraid of people with disabilities and don’t talk directly to people with disabilities.” “Some clinics say ‘We don’t do disabilities’.”

26. Top 3 IssuesHealth • Concerns about Overall Health Status • Access to Insurance and Health Care • Attitudes of Medical Providers

27. Assistive Technology and Accessibility “The largest hurdle is navigating funding sources for needed devices/technology, and getting a timely response and needed approval.”

28. Top 3 IssuesAssistive Technology and Accessibility • Full Accessibility • Access to Assistive Technology/Devices • Affordability

29. Financial Security “Having enough money to pay the bills and a bit left over.”

30. Top 3 IssuesFinancial Security • SSI, Medicaid, & Medicare are important • Accessing benefits is complicated and difficult • People want to be self-sufficient

31. Personal Relationships “ Social connectedness with people who aren’t being paid. Beyond mom, dad and school.”

32. Top 3 IssuesPersonal Relationships • The Ability to Socialize with Friends and Family of One’s Choice • Acceptance and Inclusion with People Outside the “System” • Having Support of Family, Friends and Peers

33. Community Participation “Having services available in the community and being able to take walks and shop on your own.”

34. Top 3 Issues Community Participation • Inclusion and Integration • Accessibility • Assistance and Support

35. Leisure and Recreation “The ability to actively participate in activities of choice.”

36. Top 3 IssuesLeisure and Recreation • Affordable or Free Activities that are Nearby • Accessible Activities and Recreational Facilities • Activities for Children and Youth

37. Stigma “I want to be able to say I am a student, or secretary, or anything other than I am bipolar. I don’t want to be identified as my diagnosis.”

38. Top 3 IssuesStigma • Respect for differences and personal preferences. • Increase public awareness - more community outreach and education. • To be seen as an individual rather than a “diagnosis.”

39. Spirituality “I have connected to other people in the community by being a self-advocate and being involved in my church.”

40. Top 3 IssuesSpirituality • Acceptance and Support • Choice • Accessibility

41. Government Oversight “The ADA must be more strictly enforced with landlords, health agencies, city agencies, transportation providers and hospitals.”

42. Top 3 IssuesGovernment Oversight • Americans with Disabilities Act (ADA) and Individuals with Disabilities Education Act (IDEA) • Inconsistent Enforcement of Laws • Increased Awareness of ADA

43. Political Participation “Churches are used for polling places and they are not always accessible.”

44. Top 3 IssuesPolitical Participation • Voting and participating in government are important • Not all polling places are accessible • Voter registration should be a quality indicator

45. Hopes and Aspirations “To have passion, purpose and meaning [in life.]”

46. Top 3 IssuesHopes and Aspirations • More support for people to reach their goals/dreams • Independence and self determination • Be able to have a meaningful life with respect and kindness

47. Service Related Issues “Ask us how to provide supports. It would save money down the road.”

48. Top 3 Issues Service Related Issues • Need help navigating service systems • Support independence not dependence • Self-direction/Choice

49. “To this day, why Do state agencies still question one’s desires? people with disabilities want what others want.”

50. Next Steps • The Quality Initiative: What People with Disabilities and Their Families Said About Quality of Life