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”