Our Work
Self-Advocate Perspectives on COVID-19 Research
What self-advocates have to say about research on COVID-19 and persons with intellectual disabilities
Researchers have studied the impact of COVID-19 on persons with intellectual disabilities around the globe. Now, self-advocates are sharing their opinions about this important research.
Big things are happening at HPOD this summer.
HPOD is proud to announce the launch of its Self-Advocates in Research initiative. This initiative aims to expand HPOD’s ongoing efforts to elevate self-advocates’ voices in research and scholarly activities, at a time when persons with intellectual and developmental disabilities (IDD) are increasingly becoming involved in research activities both in the United States and abroad. This initiative would not be possible without a significant gift from the Samuel Family Foundation.
As part of this initiative, HPOD is working with Massachusetts Advocates Standing Strong (MASS) to create pathways for self-advocates to engage in research activities on topics that affect their lives and at the same time to empower them to advocate for greater inclusion in research relating to persons with IDD. Building on its longstanding support for the MASS Supported Decision-Making Task Force, this summer HPOD and MASS have identified three research fellows who will play an important role in these efforts: Francesco Hladysz, Anna Weinberger, and Sam Paster. Hladysz uses he/him/they pronouns, serves as a MASS Board member, and both is a member of and strong advocate for the rights of the LGBTQ community, which he has put into practice as part of MASS’s Rainbow Program. Weinberger and Paster have both been recognized by Partners for Youth with Disabilities and Arc of Massachusetts for their leadership and are currently working as peer trainers as part of MASS’s Self-Advocacy Leadership Series.
The MASS research fellows are working closely with two other self-advocates participating in this year’s Samuel Centre for Social Connectedness’s (SCSC) summer research fellowship program. Tony Phillips, President of the Self-Advocacy Association of New York State (SANYS), and Diana Mairose, a Self Advocates Becoming Empowered (SABE) Board Member, will be working with HPOD and MASS to research the experiences of persons with IDD living in Massachusetts group homes during the COVID-19 pandemic. Both Phillips and Mairose will bring invaluable perspectives to this undertaking. Phillips has all too acutely experienced the effects of COVID-19 restrictions during his 18-month stint in an acute rehabilitation facility, where he was placed without his consent. Mairose has contributed to self-advocate-led research as part of SABE’s GoVoter Project, which has helped to shine a light on the barriers to voting that persons with intellectual and developmental disabilities (IDD) face.
To date, the MASS and SCSC fellows have reviewed some of the research literature on the effects of the COVID-19 pandemic on persons with intellectual IDD. They reviewed 9 research studies and discussed the studies’ focus, methods, participants, and findings. As a group, they reflected on if the studies were what we expected to find, if the researchers identified as persons with ID, what attitudes the researchers might have about persons with ID, and what gaps we think there are in the research. They then compiled their reflections into a plain language summary (see below). These reflections will inform their interviews with group home residents in Massachusetts about their COVID-19 experiences, which are currently underway.
Image credit: Philippa Steinberg for the Innovative Genomics Institute.
