There’s No Place Like Home: A National Study on Disability Housing

There’s No Place Like Home: A National Study on Disability Housing


There’s no place like home: a national study
of how people with intellectual and developmental disabilities (I/DD) and their families choose
where to live. We conducted research with 726 people with
I/DD and family members of people with I/DD from across the United States. We wanted to learn more about how people make
decisions about where people with I/DD will live and what they like about where they live. This video provides a summary of our findings. Common reasons people with I/DD move from
their family homes or across homes included a need for more support, family members having
difficulty providing support, wanting more independence, emergencies such as health and
safety concerns, and planning ahead for when people with I/DD’s parents are no longer
around. People said it was very hard to find information
and the process was very confusing. Some of the ways people found information
included by researching online, through people they knew such as other parents, from case
managers, from social media, from state developmental disabilities departments, housing services,
social services or centers for independent living, and from disability fairs, workshops,
and conferences. People often found themselves with limited
options to choose from. For example, only about half or 55%
of the people in our study said they were able to choose where to live, who to live
with, and what neighborhood to live in. People who lived in host homes, their own
home or apartment, and homes of family members were most likely to say that they had these
choices. People with higher support needs and people
with I/DD and mental health disabilities said there were very few community based housing
options to choose from, and were sometimes forced to turn to institutional settings instead. Most of the time family members made the decision
regarding where people with I/DD would live. While sometimes people with I/DD were included
in the decision, most of the time they were not, although they wish they were. We asked people how happy they were with where
they lived. Most people were happy, but some people were
not happy. Some of the things that made people more satisfied
or happy included safety, cost and accessibility, access to the community including transportation,
meaningful things to do during the day, person-centered services and supports, opportunities to make
friends and romantic partners, good support staff who stick around, opportunities to learn
new skills and grow independence, being close to family members, the ability to have pets,
and basic amenities such as laundry. Some of the things that made people less satisfied
or unhappy included bad relationships with housemates or roommates, provider house rules
about what people could not do in their own homes, not getting to access the community,
and a lack of choices. It’s also important to note that people
with I/DD were less happy with where they lived than family members of people with I/DD. We also asked people what their dream home
was. The majority of people dreamt of people with
I/DD living in their own home or apartment. The next most popular dream homes were supervised
group homes and in the home of a family member or friend. But there were big differences when we compared
the responses for people with I/DD and family members of people with I/DD. Both people with I/DD and family members wanted
people with I/DD to live in their own homes or apartments as their top choice. But 79% of people with I/DD selected this
as their dream home, while only 48% of family members selected this as their dream home
for their family member with I/DD. In addition, family members wanted people
with I/DD to live in congregate settings such as group homes, institutions, and planned
communities and campuses where only people with I/DD live much more often than people
with I/DD wanted to live there. We learned a lot from this study and have
a lot of recommendations based on what people with I/DD and family members said. Because people had a hard time finding information,
we believe a central place for information about housing for people with I/DD should
be created. There also needs to be increased funding to
promote quality community based housing options. There needs to be more adequate, accessible,
and integrated housing options for people. It should also be easier for people with I/DD
to receive services and supports in their own homes and family homes and in shared living
settings. More support needs to be available for people
with higher support needs and people with both I/DD and mental health disabilities. Direct support staff turnover needs to be
reduced. Increasing their wages and training can help
with this. Services and supports need to be person-centered
and based on what the person wants. We need to empower people with I/DD to exercise
their rights and work with people with I/DD to stop any rights violations that are occurring. Finally, but most importantly, people with
I/DD must be included when it comes to decisions that impact their lives. People with I/DD cherish what little time
they have in and with the community and want more opportunities to integrate into their
communities. People with I/DD want to contribute to the
choices that impact their lives such as where they live, who they live with, and how they
spend their time. People with I/DD want opportunities to learn
new skills and interact with friends and romantic partners. In essence, people with I/DD want full lives
and for people to treat them with dignity and respect. While more people with I/DD are living in
the community than ever before, more work is necessary to ensure all people have options,
choices, and opportunities. After all, there is no place like home. This project was a collaboration with The
Arc of the United States and the CQL (The Council on Quality and Leadership). This resource was made possible by funding
from The Arc of the United States. To learn more, please visit futureplanning.thearc.org/housing.

Leave a Reply

Your email address will not be published. Required fields are marked *