Our Work
COVID-19 Experiences of Persons with Intellectual Disabilities in Group Homes
Self-Advocate Researchers' Reflections
COVID-19 has had pronounced effects on the lives of persons with intellectual and developmental disabilities living in group homes, even though their stories are seldom heard.
The COVID-19 pandemic has been hard for everyone, but especially for people with intellectual or developmental disabilities (IDD). We have been denied access to life-saving health care, we have been forgotten about in institutional settings, and we have been more affected by others’ choices to take precautions.
At the same time, we think that the stories of people with IDD during the pandemic have not been told as much as they should be told. We are not just people with IDD, but we are self-advocates, which means we speak up for ourselves and people like us. We wanted both to learn about the experiences of people with IDD who have been forgotten or pushed aside during the COVID-19 pandemic and also to do our part in helping to make sure their stories are heard.
We all live on our own now. But we know we all face challenges to keep our independence. For example, Tony spent the first 18 months of the pandemic in a nursing facility against his will. In his words, “they took away everything from me,” and now he’s fighting to get his life back.
It’s hard to live independently in an ableist world, and the pandemic threatened to take away a lot of the independence that many people with IDD had fought for. Even for those of us who have been able to live independently throughout the pandemic, we have had to fight against forms of isolation we had not experienced before.
We knew that our peers living in group settings have been hit harder by the pandemic because of where they lived, or at least have had different experiences from people with IDD who were living on their own. So, we decided to work together to research the experiences of people with IDD living in group homes. And we decided we would do it by talking to them directly. Fortunately, we got support from people at the Samuel Centre for Social Connectedness and HPOD who shared our values.
We got ready for our research by reviewing 9 research studies that explored the experiences of people with IDD during the pandemic in different countries. We thought there were some gaps in this research For example, most of the researchers did not talk directly to people with IDD. Instead, they reached out to staff or family members to try to understand the experiences of people with IDD. Also, none of the researchers seemed to identify as people with IDD themselves. We reflected on these studies and talked to each other and to other self-advocates to come with questions that we wanted to ask people with IDD living in group homes.
We then interviewed 6 people with IDD living in group homes in Massachusetts about their COVID-19 pandemic experiences. These people were all members or had leadership roles in Massachusetts Advocates Standing Strong. We had some basic questions to guide us but we did not have a script. This allowed us to have a natural conversation and relate to each person as needed. We also had a focus group discussion with our interviewees at the end to give them a chance to hear what we heard and to let us know if we had heard their stories right.
Each person told us a different story and was able to open up to us in ways that they might not have done if they were talking to researchers without disabilities. This was valuable. Some people told us how they noticed that their staff had COVID-19 symptoms, despite group home rules that they not come to work, and had to tell them to go home. Others shared with us how they were worried about catching COVID-19, especially after they saw family members die from it.
One thing that was especially interesting to us was that most people said that they had gotten information about COVID-19, what it is, and how they can protect themselves from it. But no one mentioned getting information about the specific risks that they faced because they were living in group settings where staff could come and go. While some people guessed that they caught COVID-19 from their group home or day program staff, others seemed not have considered that possibility.
At the same time, even though it seemed that people with IDD living in group homes might have had more opportunities for social connectedness during the pandemic because they were living with other people like them, this did not seem to be the case. Most people shared that they spent a lot of the pandemic quarantining in their rooms because other members of their house or staff had gotten sick. Even though staff and the people with IDD we talked to spent a lot of time in the same place, it did not seem like the staff tried to help people fight social isolation. It seemed instead like the staff was focused just on keeping people healthy and safe and meeting their day-to-day needs. It seems to us that there were a lot of missed opportunities for group home staff to help people feel less isolated.
For us, the restrictions that people with IDD living in group homes faced during the COVID-19 pandemic confirmed to us the need to help as many people as possible to live independently. As soon as the pandemic set in, the people we talked to seemed to experience only the downsides of group living, like not being able to control their schedules or go outside, and none of the possible benefits, like interacting with their peers or being part of a community.
We also think that more researchers should pay attention to the experiences of people with IDD living in group homes and the mental health effects of living under pandemic restrictions. We hope that after reading this, these researchers will also include people with IDD, not only because it’s the right thing to do, but also because researchers with IDD are better than other researchers at helping people with IDD to share their stories. In the end, it should be “nothing about us without us.”
Anne Fracht is HPOD's Self-Advocacy Associate.
Diana Mairose is an Advocate at the Hamilton County Developmental Disabilities Services, a Board Member of Self Advocates Becoming Empowered, and a 2022 Samuel Centre for Social Connectedness Research Fellow.
Anthony Phillips is President of the Self-Advocacy Association of New York State and a 2022 Samuel Centre for Social Connectedness Research Fellow.
Hezzy Smith is HPOD's Director of Advocacy Initiatives and provided support in preparing this blog post.
