With no official government tally, one group is working to identify how many people with disabilities have contracted or died from coronavirus while living in congregate settings.

The Autistic Self Advocacy Network has created an online tool that compiles data from local governments and media reports across the nation. The figures account for individuals with disabilities living in nursing homes, institutions for people with developmental disabilities, psychiatric hospitals, group homes and other facilities.

To date, the advocacy group estimates that there have been more than 18,000 deaths and an additional 90,000 people who have contracted COVID-19 in these settings. However, some of the numbers include cases among staff members too and the self-advocate organization said it’s working to limit the tally to just residents with disabilities.

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“From the numbers we see that people with disabilities are getting infected and dying at a higher rate than people without disabilities,” said Nicole Jorwic, senior director of public policy at The Arc. “This is beyond alarming.”

Last month, the Trump administration instituted new rules requiring nursing homes to be more transparent with residents and families and report any cases of COVID-19 directly to the Centers for Disease Control and Prevention amid outrage over the toll the virus has taken in these environments. Disability advocates have asked for similar steps to be mandated in settings where people with disabilities live given the risks and the outbreaks that have occurred.

“We implore (the Centers for Medicare & Medicaid Services) to extend these same requirements to all institutional settings — including ICF-IIDs, IMDs, substance use disorder treatment facilities and psychiatric residential treatment facilities — and other Medicaid-funded congregate settings where older adults and people with disabilities live, including group homes and assisted living facilities. The need for transparency, information and data collection is equally as critical to protecting the safety and welfare of people in these settings as they are for residents of nursing homes,” reads a letter to federal health officials from the Long-term Services and Supports Task Force of the Consortium for Citizens with Disabilities, a coalition representing dozens of disability advocacy groups.

The letter cites outbreaks at an institution in Illinois where the National Guard had to be called in as well as another in Massachusetts where nearly half of residents were infected in addition to facilities serving people with developmental disabilities in Utah, Texas and New Jersey. What’s more, coronavirus has affected numerous group homes in New York, Maryland, New Jersey and beyond, the letter indicated.

Even where data does exist, there are questions about how complete it is. Advocates with Disability Rights Louisiana independently reached out to staff at facilities in that state serving people with developmental disabilities and found that the hospitalization rate of residents and staff from coronavirus was three times higher than what state data showed. The group is now urging the state of Louisiana to consider mass testing of the entire population of people with developmental disabilities for the virus.

Meanwhile, the Autistic Self Advocacy Network’s tracker notes that some states are reporting zero cases or deaths, but that likely just means there is no data available.

Jorwic from The Arc said that advocates have received no reply to their request for better data collection from the Trump administration.

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