Data Project Year in Review
For the past year, The Arc New York has been 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. This project has grown to include comprehensive data on COVID-19 infections, hospitalizations, deaths, recoveries, quarantines and vaccinations.
To date, we have collected a full year of data, with a more than 98% response rate from The Arc New York Chapters. This dedication and consistency has made The Arc New York data the foundation of the broader NYDA data and the resulting studies. The studies published to date, along with media and academic coverage citing the project, can be found here.
The data project has proven extremely influential in our advocacy efforts. By concretely demonstrating the elevated risk of COVID-19 for people with I/DD and the broader impact on our field, we secured vaccination priority for all New Yorkers with I/DD, and supported the call for appropriate resourcing for service providers, which is clearly reflected in the senate and assembly budget proposals. Our data also illustrates the effectiveness of provider response to the pandemic. While the risk and infection rates are higher for the population we support, we did not see equally disproportionate fatality rates, and over the course of the year, case rates stabilized in line with those of the general population. We continue to advocate for state and federal support in our pandemic response, and this data has proven essential to those efforts.
The Office for People with Developmental Disabilities (OPWDD) has partnered with in The Arc New York in presenting the data and analyzing the information to shape policy decisions around quarantine practices. The studies which have emerged from the data project are now being cited by The Arc US and federal leaders to advocate for vaccine priority for people with I/DD on a federal level. The Arc US modeled their national data collection on our work, and the published studies have gained traction in policy discussions and media and academic coverage. Most recently, the data project was highlighted in a bipartisan effort led by U.S. Rep. John Katko, urging the CDC to expand vaccine eligibility to include all people with I/DD and the staff who support them. You can read more from Rep. Katko here.
We are immensely grateful for the intense work our Chapters have put in every week to ensure this critical data is available and accurate. Your efforts are shaping the national pandemic response for people with I/DD.