As Caregivers Age, People With Disabilities See Few Housing Options
A national study finds housing choices are limited for people with developmental disabilities who often get little say about where they might live when they leave home.
Currently, about 75 percent of adults with disabilities live with an aging parent or caregiver and most are not utilizing public supports or services, according to a new report from The Arc. More than half of families have no plan for the future.
The report is based on a survey of 615 people across the country, split about evenly between those with intellectual and developmental disabilities and their family members. Researchers also conducted a series of group brainstorming sessions with 111 individuals with disabilities and their families in Illinois, a state that’s notorious for having limited community-based options for adults.
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Families reported significant barriers to finding housing. More than half of those surveyed said that the current living situation was the only one available to them. When asked about their dream home for themselves or their loved one with developmental disabilities, over 60 percent said it would be their own home or apartment, while just 14 percent cited a group home and fewer than 12 percent said the home of a family member or friend.
There is no centralized place to find information about housing for this population, the report found. Instead, families said they have turned to government agencies, local centers for independent living, social media and informal networks of family and friends for ideas.
Individuals with intellectual and developmental disabilities said they wanted to be involved in decisions about where to live, but these choices were often made by family members for them, according to the findings.
“Where you live and the characteristics of that environment impact so many aspects of someone’s day to day life. The reality is people with disabilities don’t have enough options, and they are too often bystanders when these big decisions are made about their lives,” said Peter Berns, CEO of The Arc. “Our hope is that this report sparks a dialogue across the country that leads to progress in integrated housing options, and expands person-centered planning and supported decision-making as people with intellectual and developmental disabilities and their families prepare for the future.”