The Quality Initiative What People with Disabilities Have to Say about their quality of life
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Transcript of The Quality Initiative What People with Disabilities Have to Say about their quality of life
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)
Quality InitiativeBackground
Meetings with Stakeholders
Formed a Coalition on Improving Quality of Life
Coalition Members
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
Focus Group Demographic Information
Voluntary
259 of 405 people (64%)
Demographic InformationGender
Male 139 (55%)
Female 114 (45%)
Focus Groups Demographic Information
Age
Focus Group Demographic Information
Type 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.
Comparison of Focus Group Demographics to NYS Census Data- Ethnicity
Race/Ethnicity Focus Group Demographics (%)
NYS Census Data (%)
White/Non-Hispanic 65% 60%
Black/African American
16% 17%
Hispanic/Latino 9% 16%
American Indian/Alaskan Native
7% 0.1%
Asian/Pacific Islander
3% 7%
Demographic InformationEmployment
Not employed 83 (52%) Full time 37 (23%) Part time 29 (18%) Volunteer 10 ( 7%)
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%)
Demographic InformationEducation
Less than High School graduate44 (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.
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.)
Focus Groups Conducted
Focus Groups11 Areas of Life
Other Areas Identified by Participants
Hopes and aspirations Financial security Services related issues Stigma Accessibility (not related to a life area) Government oversight
“Housing equals home.”
Housing
Top 3 Issues Housing
Having Good Quality (clean, safe, well-maintained)
Having Choice and Availability
Being Able to Live as Independently as Possible
“To be included, you must have transportation.”
Transportation
Top 3 IssuesTransportation
Affordability and Availability
Accessibility
Paratransit Services (i.e. Access-a-Ride, STAR, Lift line)
“ IEP [Individualized Education Program] that means something and is not just a golden sticker.”
Education
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
“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.”
Employment
Top 3 IssuesEmployment
Meaningful Work, including Salary, Benefits and Vacation
Choice of Jobs and Hours of Work
Supports to get a Job you Want
“Doctors are afraid of people with disabilities and don’t talk directly to people with disabilities.”
“Some clinics say ‘We don’t do disabilities’.”
Health
Top 3 IssuesHealth
Concerns about Overall Health Status
Access to Insurance and Health Care
Attitudes of Medical Providers
“The largest hurdle is navigating funding sources for needed devices/technology, and getting a timely response and needed approval.”
Assistive Technology and Accessibility
Top 3 IssuesAssistive Technology and
Accessibility
Full Accessibility
Access to Assistive Technology/Devices
Affordability
“Having enough money to pay the bills and a bit left over.”
Financial Security
Top 3 IssuesFinancial Security
SSI, Medicaid, & Medicare are important
Accessing benefits is complicated and difficult
People want to be self-sufficient
“ Social connectedness with people who aren’t being paid. Beyond mom, dad and school.”
Personal Relationships
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
“Having services available in the community and being able to take walks and shop on your own.”
Community Participation
Top 3 Issues Community Participation
Inclusion and Integration
Accessibility
Assistance and Support
“The ability to actively participate in activities of choice.”
Leisure and Recreation
Top 3 IssuesLeisure and Recreation
Affordable or Free Activities that are Nearby
Accessible Activities and Recreational Facilities
Activities for Children and Youth
“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.”
Stigma
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.”
“I have connected to other people in the community by being a self-advocate and being involved in my church.”
Spirituality
Top 3 IssuesSpirituality
Acceptance and Support
Choice
Accessibility
“The ADA must be more strictly enforced with landlords, health agencies, city agencies, transportation providers and hospitals.”
Government Oversight
Top 3 IssuesGovernment Oversight
Americans with Disabilities Act (ADA) and Individuals with Disabilities Education Act (IDEA)
Inconsistent Enforcement of Laws
Increased Awareness of ADA
“Churches are used for polling places and they are not always accessible.”
Political Participation
Top 3 IssuesPolitical Participation
Voting and participating in government are important
Not all polling places are accessible
Voter registration should be a quality indicator
“To have passion, purpose and meaning [in life.]”
Hopes and Aspirations
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
“Ask us how to provide supports. It would save money down the road.”
Service Related Issues
Top 3 Issues Service Related Issues
Need help navigating service systems
Support independence not dependence
Self-direction/Choice
“TO THIS DAY, WHY DO STATE AGENCIES STILL QUESTION ONE’S DESIRES? PEOPLE WITH DISABILITIES WANT WHAT OTHERS WANT.”
Next Steps
The Quality Initiative: What People with Disabilities and Their Families Said About Quality of Life
Promoting Quality of Life Issues
I. Spread the word through presentations
II. Education and Training
III. Promote Policy Change
Access to Information
Full Report Quality Stories PowerPoint Guidance Document
www.cqc.ny.gov under “Publications”