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

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Being self-sufficient and having the ability to handle their own money were ... It was noted that it can be more difficult for people with disabilities to ... – PowerPoint PPT presentation

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Title: 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)

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)

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)
  • Masters 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)

15
Focus Groups11 Areas of Life
  • Housing
  • Transportation
  • Education
  • Employment
  • Community Participation
  • Health
  • Leisure and Recreation
  • Spirituality

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 dont talk directly to people with
    disabilities.
  • Some clinics say We dont 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 arent
    being paid. Beyond mom, dad and school.

32
Top 3 IssuesPersonal Relationships
  • The Ability to Socialize with Friends and Family
    of Ones 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 dont 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 ones 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

51
Promoting Quality of Life Issues
  • I. Spread the word through presentations
  • II. Education and Training
  • III. Promote Policy Change

52
Access to Information
  • Full Report
  • Quality Stories
  • PowerPoint
  • Guidance Document
  • www.cqc.ny.gov under Publications
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