Washington, D.C. – As people with intellectual and developmental disabilities (I/DD) and their families age, one question often takes center stage: Where will I or my family member live in the future? In 2019, The Arc’s Center for Future Planning partnered with CQL | The Council on Quality and Leadership to better understand the challenges that families face when making plans and decisions around future homes, and are now releasing this important report and recommendations.

Nationwide, around 75% of adults with a disability live with an aging parent or other caregiver, and most are not connected to public supports or services. As a result, aging parents and family members frequently serve as unpaid primary caregivers for their family member with I/DD. Families worry about what will happen when they are not able to provide support to their loved one and are especially concerned about where their family member will live. However, more than half of families do not have a plan for the future.

The research found that:

• Most people with I/DD and their families said that they had very little choice in where they live because there were not many home options that would accept a person with I/DD.
• Family members often decided where the person with I/DD would live, but people with I/DD wanted to be involved in this decision.
• People with I/DD cherish 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, participate in tasks such as cleaning, cooking, and administering their own medication, and the chance to interact with friends and romantic partners.
• People dream of having independence and opportunities, a setting that is physically accessible, having the ability to see their friends whenever they want, being treated with respect, and having well paid and qualified support staff.

“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. 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,” said Peter Berns, CEO, The Arc.

The report includes several recommendations, including:

• Create a centralized place for information and resources;
• Increase funding to promote quality, community-based housing services and housing options;
• Improve the ability for families to navigate and use the disability service and housing systems;
• Increase wages and training for direct support staff to help people with I/DD in their homes;
• Ensure services and supports are person-centered and directed by what a person wants; and
• Empower people with I/DD to exercise their rights and make decisions.

The Arc and CQL conducted a two-part mixed method study. The first part of this study included a national online survey of people with I/DD and family members of people with I/DD; the survey included both quantitative and qualitative items. The second part of this study included in-person nominal group technique (NGT) sessions throughout Illinois. NGT is a participatory action research method which includes structured brainstorming similar to a focus group, except it is more inclusive, accessible, collaborative, and reduces the power dynamics often involved in research. In total, 726 people participated in this study (377 people with I/DD (51.93%), 349 family members of people with I/DD (48.07%)), representing 45 states and the District of Columbia.

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 600 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.