nacdd: empowering community inclusion through natural supports. arizona
DESCRIPTION
From NACDD's 2014 Annual ConferenceTRANSCRIPT
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/