The Arc New York is collaborating with New York Disability Advocates (NYDA) and Syracuse University on an ongoing project to collect and analyze weekly COVID-19 data from voluntary I/DD providers, including all Chapters of The Arc New York. This data helps inform our understanding of the risks of COVID-19 for people with I/DD, strengthen our pandemic response, and support our advocacy efforts. The published studies, along with media and academic coverage citing the project, can be found below. A Data Project year in review update can be found here.
Syracuse University Papers
COVID-19 outcomes among people with intellectual and developmental disability living in residential group homes in New York State
Published in Science Direct Disability and Health Journal - June 2020
COVID-19 Trends Among Adults with Intellectual and Developmental Disabilities (IDD) Living in Residential Group Homes in New York State through July 10, 2020
Published by the Lerner Center for Public Health Promotion - September 16, 2020
Media, Advocacy and Academic Coverage
Katko to CDC: Expand Vaccine Eligibility to Individuals with Disabilities & Support Staff
Press Release - March 17, 2021
Lack of Covid Data on People with Intellectual Disabilities ‘Comes With a Body Count’
Kaiser Health News - February 12, 2021
Lack of Covid Data on People with Intellectual Disabilities ‘Comes With a Body Count’
NPR - February 12, 2021
People with disabilities desperately need the vaccine. But states disagree on when they’ll get it
Washington Post - January 13, 2021
CDC Adds Down Syndrome To COVID-19 ‘Increased Risk’ List
Disability Scoop - January 7, 2021
Framework for The Equitable Allocation of COVID-19 Vaccine
National Academies of Sciences, Engineering and Medicine (book, pages 120, 126) - November 2020
Risk Factors for COVID-19 Mortality among Privately Insured Patients
Fair Health - November 2020
Developmental Disabilities Heighten Risk of Covid Death
New York Times - November 10, 2020
Letter to Seema Verma of CMS urging the administration to share additional COVID-19 Data
From Senators Warren, Murray, Hassan - October 2020
Trump Administration Faces Pressure to track COVID-19 at institutions & Group Homes
Disability Scoop - October 26, 2020
Comments to CDC Advisory Committee on Immunization Practices
Consortium for Citizens with Disabilities - Oct 23, 2020
A Crisis Decades in the Making: Disability Housing Policy and COVID-19
Harvard Political Review – October 11, 2020
As Homes for People With Disabilities Sought to Swiftly Isolate Residents With COVID, State Demanded Days-Long Review
The City - August 5, 2020
COVID-19 may be deadlier for group-home residents
Spectrum News - July 23, 2020
Group Home Residents With Developmental Disabilities More Likely To Die From COVID-19
Disability Scoop - July 13, 2020
Study: People with IDD living in residential group homes more likely to die from COVID-19
News Medical - June 25, 2020
COVID-19 Infections And Deaths Are Higher Among Those With Intellectual Disabilities
NPR - June 9, 2020
People With Developmental Disabilities at Higher Risk for COVID-19
The Mighty - June 9, 2020
Journal ReSearch/Citations
Prioritizing COVID-19 Vaccinations for Individuals with Intellectual and Developmental Disabilities
EClinicalMedicine, The Lancet - February 5, 2021
Benefits, Burden, and COVID-19: A Response to Dutheil et al. (2020)
Journal of Autism and Developmental Disorders - October 2020
Exploring the experiences of siblings of adults with intellectual/developmental disabilities during the COVID‐19 pandemic
Journal of Intellectual Disability Research - October 2020
ADA 30 and beyond: The urgent need for intersectional research
Disability and Health Journal - October 2020
Social inequities in the distribution of COVID-19: An intra-categorical analysis of people with disabilities in the U.S.
Disability and Health Journal - September 2020
Coping, fostering resilience, and driving care innovation for autistic people and their families during the COVID-19 pandemic and beyond
Molecular Autism - July 2020
