National Association of Councils on Developmental

DisabilitiesAnnual Conference, 2014

A DAY IN OUR SHOES:Adults with Developmental Disabilities Share Their Experiences Living in Small

Cities and Towns

Project GoalsTo hear directly from adults with developmental disabilities

To better understand daily life among adults with developmental

disabilitiesTo assess unique the problems among adults with developmental

disabilities outside an urban setting

Statewide focus groupsFlagstaff, Prescott Valley, Sierra Vista, Yuma

35 participants Average age: 39 years old66% white, non-Hispanic80% at least a high school diploma

40% unemployed, 29% center or group based employment, 2% competitively employed

“A Day in My Life”

Transportation and Access:

Getting Around Town

Transportation and Access (cont.)

Structural barriers persistAt restaurants, their bathrooms are too small. You can’t even get in there. It’s an old town, but there is always a step.

Loss of control/choice when relying on others

When deciding on where to go, for us in the group home, it really depends on what one person wants to do. Four people don’t want to go to the same place.

Inaccessible transportation

Location means everything

Source of Transportation Reported by Percent of Arizonans with DD, 2012

Leisure Time and Social Networks:

“A Day in My Life”

“A Day in My Life”

“A Day in My Life”

Social NetworksSupport networks varied by where the individual lived (i.e. group home, with family, apartment)

Friends like me

Many of their high school friends relocate

Social lives interconnected with professional staff

When we go out to dinner go out in public, we go with staff out and eat and see friends. We will go out once on the weekends. We do a lot of stuff in the house a lot more. I hang out a lot more with my staff than anything else.

Choice of Living Arrangement:

The Desire for Independence

Arizonans Living at Home in

Great Numbers

Desire for Independence Satisfied with living with family or their group home, but would prefer having additional options

It is not like having freedom. We want to be able to spend time with our friends, invite people over, get away from our parents - spend time with your friends more.

The reason I want to live on my own is so I can be happy, feed myself, pay the bills myself, try on and get clothes by myself, and get a pet.

Shortage of affordable, accessible housing

Unemployed and Not Looking:

Barriers and Challenges to Finding Employment

Employment Outcomes Deteriorating

Arizona Employment Outcomes (2011)

People with disabilities are more likely to be living in poverty, making $9,652 less annually than people without disabilities.

People with disabilities are approximately three times LESS likely to be employed than people without disabilities.

Three-quarters of people with disabilities are unemployed and not looking for work.

Why They Are Not in the Labor Force

Employers’ bias about their disabilities I had the manager tell me that I couldn’t work there because I was retarded. I work harder and do more than other people, but I never get the opportunity.

Felt the job market had changed to their detrimentAt jobs that I would normally get, like fast food, people who are overqualified are applying.

Fear of losing SSI benefitsWhen you work too many hours a year, you lose your benefits. When you lose your benefits, you have to start the whole process over again if you ever need it again.

Didn’t think they could work or were happy not working

Why They Are Not in the Labor Force (cont.)

Negative past work experiences

Although some had career ambitions, most would take any job. This is what one individual said about working at her center-based job.It is not our favorite, but it is what we have right now. At least we have a job where we can earn money.

Some preferred center-based employment or day treatment.

If I work out in the community I would just be picked on and made fun of. I would rather work with others like myself where I won’t get teased.

Facing Family Fears:

Balancing Safety and Independence

Facing Family Fears: Balancing Safety with Independence

My biggest problem as a parent is what is going to happen to him when I am gone. My husband passed away two years ago …. I always took him everywhere. We exposed him to everything. He can read and write…It was his idea to move to an apartment. We were against it, but it has worked out very well. He keeps his apartment very clean. He does all my chores. Comes over to my house every day. He shops by himself.

Need for Information and Advocacy:

Finding Their Voices

Need for Information and Advocacy

Feel a loss of control You don’t want to have to depend on people, you want to be able to be independent… to do these things for yourself.

We do have a voice, but we keep getting ignored.

Unanimously desired a local self-advocacy groupWhere can we go to get better information to help us along. How to get Social Security, how to get benefits…a support system. That would be really great for us. We don’t need to be alone.

You can’t change people, but you can change perception.

Discussion and Next Steps:

Some Things to Consider

The Poverty Cycle

“Gardner and Mathis Disability Bubble”

Mentors

Community Jobs

Diverse friends

Community interests

Neighbors

Civic/religious/ volunteer association

Friends of friends

Significant other

Families’ co-workers

Access to information

Access to resources

Sports

Entertainment

Choice

Control

Independence

Flexibility

Creativity

Breaking the Bubble: Continuum of Community

Participation

Physical Having Active presence presence participation

 

LimitationsThe focus group participants don’t necessarily represent the overall state DD population

Reports their perceptions, which may differ from the points of view of counselors or family members

Focus group time/location may affect who attended

Recruitment may not include those who are “disconnected”

Next StepsIndependence over Dependence: How can individuals be offered more opportunities outside of the disability bubble, learn independence and learn from failure, while still remaining safe?

Building a System Outside of the System: How can informal systems be expanded to provide mentoring networks, ride sharing, information exchanges, and support?

Community Participation: How can individual interests and dreams be supported by a formal system with a shortage of resources and transportation?

MorrisonInstitute.asu.edu

www.azdes.gov/ADDPC/Home/