Family Financed Housing for Adults with Disabilities

Alan R. Factor, Ph.D.
University of Illinois at Chicago, 2002

What This Study is About:
In the United States, nearly 87,000 families are on community agency waiting lists for housing. Housing is a big worry for older parents because they want to make sure their relative has a good place to live after they die. Many families are setting up their own housing for their relative with a disability and more families may also want to do this.
The purpose of this study is to learn about the different ways families have set up and paid for housing for their relative with a disability. We will mail surveys to about 50 families across the United States who set up their own housing for a relative with a disability. We want families to tell us what financial and legal plans they made to set up housing and support services for their relative with a disability and about future plans they have made to be sure that their relative with a disability will be okay when they are not around anymore. We also want to learn how happy they are with the house and with any services they use. We will also find out about government programs that help families pay for the house. We will use what we learn to write a guidebook that will make it easier for other families to set up housing for their relative. We will also suggest ways the government can help families who need housing for their relative.

What We Have Done to Date:
  • We have found 48 families to be in the research study.
  • We wrote stories about the study that were in The Arc Today, the ADDVANTAGE, and the Maximizing Human Potential newsletter from the American Society on Aging.
  • We prepared and distributed fliers about the study to staff, families, and self-advocates at training events and at conferences.
  • The advocate advisors also gave us the names of families to contact about the study.
  • We called service providers, attorneys, and others who work with families that have a member with a disability to ask them if they knew of any families who could be in our study
  • We found out about different government and private programs that help families and people with disabilities pay for housing.
  • We had to make a consent form that followed the University's new rules to make sure families would understand what the study was about and would be aware of any possible risks from being in the study. The University approved our new consent form on June 28, 2000.
  • We had a focus group here at UIC in October, 2001 with people who had been able to develop housing for their relative with a disability. They talked about the problems they had and the things that worked well. We used what they told us to help us make a questionnaire for our study.
  • We wrote our questionnaire and have been testing it by calling up some people who have created housing for their relative with a disability and asking them the questions. We are also asking them to tell us what they think is good about the questionnaire and what they think we should change.
  • How the RRTC Advocate Advisors Can Help
  • We would like the Advocate Advisors to review our survey to let us know if it asks the right questions.
  • Advocate Advisors can review our guidebook when it is written to make sure it will be useful to families.
  • Advocate advisors can tell us the best way to get the study results to families, advocates, service providers, and policy makers.

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