A family-based organization for people with intellectual and developmental disabilities

COVID-19 Data Project

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  

Syracuse University Aging Studies Institute Letter to the CDC Advisory Committee on Immunization Practices 

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 HealthNovember 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

The Arc New York Advocacy Talking Points 

General COVID-19 Talking Points