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COVID-19 Data Project

Since the beginning of the COVID-19 pandemic, the New York Alliance has been collaborating with New York Disability Advocates (NYDA) and Syracuse University on a COVID-19 research project to collect and analyze weekly COVID-19 data from voluntary I/DD providers, including members of the New York Alliance for Inclusion and Innovation. The data collected as part of this project helps inform our understanding of the risks of COVID-19 for people with I/DD, strengthen our pandemic response, and support our advocacy efforts. This project has been instrumental in ensuring that individuals with I/DD and those that care for them are prioritized by policy makers at both the State and Federal Government.  The published studies, along with media and academic coverage citing the project, can be found below.

For more information, contact Ryan Cox, NY Alliance Vice President for Analytics and Financial Business Strategies.

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

 

JOURNAL RESEARCH/CITATIONS 

Prioritizing COVID-19 Vaccinations for Individuals with Intellectual and Developmental Disabilities
EClinicalMedicine, The Lancet - February 5, 2021

Risk Factors for COVID-19 Mortality among Privately Insured Patients
Fair Health - November 2020

Letter from Senators Warren, Murray, Hassan to Seema Verma of CMS urging the administration to share additional COVID-19 data
October 2020

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

MEDIA 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

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

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