COVID 19 Case Rate and Mortality for I/DD

October 27, 2020

We would like to share a copy of the attached study COVID-19 Case and Mortality Report (I/DD)

“The 2020 COVID-19 pandemic has disproportionately affected people with Intellectual or Developmental Disability (I/DD). The purpose of this study was to evaluate the impact of COVID-19 on people with I/DD across the US and to educate key stakeholders to better support people with I/DD.”


This is a significant, eight-state report. We invested a fair amount of time and energy in this effort. And we engaged the experts because we always, always want to rely on hard data.

In this case, the data are just painful.  We found that the likelihood of an individual with I/DD being diagnosed was roughly equivalent to that of a member of the general public – 1.1 times more likely.  Once diagnosed, however, the individual with I/DD was 1.84 times more likely to die than a member of the general public. That is a significant difference.

We are proud that our providers are doing an amazing job protecting these individuals from contracting COVID.  The vast majority of these individuals have co-morbid conditions. They are extremely vulnerable in the best of times. After contracting this virus, the data tell us what happens.

All this leads to a crushing need for more resources.  We have been the invisible, silent long-term care population; we now need to be very visible!

Providers need higher reimbursement rates so that they can increase pay for Direct Support Professionals, or DSPs, who are the backbone of our state’s community-based system of care; we are very grateful for the recent decision to reinstate the rate “refresh” in January of 2021.  It will help, but it will not provide the funding to give our DSPs an adequate wage. 

Individuals with I/DD and DSPs must be prioritized for receipt of any developed/approved vaccine for COVID-19.

Especially now, as COVID-19 infection rates are again rising, we need to make sure that adequate Personal Protective Equipment (PPE) is available to providers and all organizations that support individuals with I/DD and DSPs.  Only today, we received notice that:

“After several months of COVID-19 response and communication between DBHDS and VDH, we now have the opportunity to assemble a DBHDS-specific advisory group which would report to and advise the VDH-led COVID-19 Long Term Care Task Force. This DBHDS led advisory group will work to identify and make recommendations specifically related to individuals served in, and providers of DBHDS-licensed congregate care settings.”

This is most certainly a step forward!