Our Work
Experiences of Group Home Residents with Intellectual Disabilities during the COVID-19 Pandemic
Self-advocate researchers shine a light on under-explored story
Through inclusive research projects, self-advocates can address knowledge gaps on topics important to the lives of persons with intellectual disabilities. Image courtesy of Microsoft PowerPoint 2024.
Despite awareness that the COVID-19 pandemic disproportionately affected people living in congregate settings as well as the increased health risks faced by people with intellectual and developmental disabilities (IDD), few researchers have spoken directly to group home residents with IDD about their experiences. Moreover, few studies on the effects of the COVID-19 pandemic on persons with IDD have included persons with IDD as researchers. As a result, there is a risk that researchers, policy-makers, and the broader public will not hear the voices of a marginalized group of people affected by the global pandemic.
Through HPOD's Self-Advocates in Research initiative,1 a group of self-advocate researchers have helped to address this knowledge gap. Last month, they published findings from an inclusive, qualitative research study that explored the experiences of group home residents with IDD in Massachusetts during the COVID-19 pandemic. The six study participants both identified as self-advocates, and as many others, they reported feelings of frustration and isolation. However, these feelings were exacerbated by community access restrictions imposed by their group homes that were greater than the lockdowns and other restrictions experienced by the general population.
This study also poses serious questions about how well group homes protected residents from COVID-19 transmission. Although several participants reported confidence that their staff was doing everything possible to protect them, their experiences suggested concerning lapses. One participant described when a staff person came reported to work with COVID-19 symptoms. She her staff she believed he had COVID-19, but he staff insisted he did not and proceeded to help her get dressed and eat breakfast. The next day, he tested positive for COVID-19. Another participant similarly described a having to call her house manager three times on the same day about different staff reporting to work despite being symptomatic and each time the manager had to tell the staff to leave.
Poignantly, a third participant, after noticing that suddenly people at her day program began masking, asked her group home staff not to send her back to the day program. Her staff insisted she go anyway “because they want everyone to go to program… On Mondays they don't have staff. They only have two people.” She went to her house manager, but he said,
"'If you want to stay home you have to pay [for the additional staff].' That's what he told me.”
She reluctantly attended day program and tested positive for COVID-19 shortly thereafter.
But they also reported some silver linings: several participants either successfully changed where they lived or worked or forged new relationships. Two participants took up paid remote work as trainers for Massachusetts Advocates Standing Strong. One of them recalled that at her former day program, the “staff would always call in sick,” and it became “boring—we just watched TV.” She had been thinking of changing her program before the pandemic, but the pandemic opened up the possiblity of remote work as a trainer. Two participants started new romantic relationships during the pandemic. One of them shared that despite his frustrations about being unable to see his new girlfriend very often because both his and her group homes go into lockdowns any time a housemate tests positive for COVID-19,
“She makes me feel so good. She makes me laugh every day. [....] She's unbelievable, and she loves me so, so much."
For another participant, the positive change she made about where she lived was bittersweet. Early in the pandemic, she lost her mother, who refused to wear a mask or change her behaviors. She then decided to move out of her group home because "it was like everybody else wouldn't wear their masks. [....] They all didn't believe in COVID because they kept on thinking that Trump was right, that it was just a hoax." When she moved out, "It was like my dream came true because I had wanted to be on my own, I had wanted to be independent" But, she added,
"I had wanted my mom to be able to see that: me being able to be on my own and being independent. [.... S]he wasn't here to see that goal reached."
Like other inclusive research studies focusing on the COVID-19 pandemic, this one has helped to uncover previously unreported themes. It has also shed light on the unique community access barriers that group home residents with IDD faced during the pandemic. Fortunately, opportunities for self-advocates to participate in research are expanding. A critical tool for engaging self-advocates as researchers are quality resources for training persons with IDD on human subjects research. To this end, as part of the study described above, HPOD published its plain language summary of the Belmont Report to encourage other researchers to engage with self-advocates. Through these and similar efforts, persons with IDD will play a greater role in defining what is known about both them and the issues that affect their lives.
