Institutions serving people with developmental disabilities have been hard hit by the coronavirus, but no one knows how widespread the issue is and advocates say that needs to change.

The Trump administration implemented rules in May mandating that nursing homes report COVID-19 infections directly to federal officials and notify residents and their families of such cases. But, despite numerous outbreaks, no similar rules apply to other types of institutional settings.

“We do not know what outbreaks have looked like at (intermediate care facilities for individuals with intellectual disability), psychiatric facilities or even group homes,” said Alison Barkoff, director of advocacy at the Center for Public Representation. “We hear reports, we see reports in the media, but there is no federal requirement that these be reported. It’s really just what makes the news.”

Most states are not collecting data on COVID-19 cases at institutions serving people with developmental disabilities or, if they are, they are not making the data public, Barkoff said.

“Nursing homes have gotten a lot of attention because we know how big the problem is,” Barkoff said. “We don’t have that same kind of information to put a spotlight on how big of a problem it is in other types of congregate settings even though we know it is happening.”

Disability advocates say there is no reason why the nursing home requirements shouldn’t apply to other types of Medicaid-funded institutional settings.

In comments submitted last month on the nursing home regulations, advocates with the Consortium for Citizens with Disabilities’ Long-Term Services and Supports Task Force called it “appalling” that the only source currently for national data on infection and death rates across all types of institutional settings is a tracking tool compiled by the Autistic Self Advocacy Network, a small nonprofit which is collecting what’s available from state governments and monitoring media reports.

“Residents in all institutional settings — not just nursing homes — are at serious risk during the COVID-19 crisis, and regulations to promote resident safety must address all institutions if we hope to effectively mitigate the outbreaks residents in these settings face,” the advocates wrote.

To date, the Autistic Self Advocacy Network notes that there have been over 269,000 cases and more than 61,000 deaths in congregate settings, but the group indicates that that’s likely an incomplete picture.

So far, advocates indicated that their conversations with the Centers for Medicare & Medicaid Services have not yielded any changes in policy.

However, a bill introduced in the U.S. Senate in May known as the Nursing Home COVID-19 Protection and Prevention Act, or S. 3768, would provide emergency funding and require the Department of Health and Human Services to collect data on COVID-19 cases and deaths at nursing homes, intermediate care facilities and psychiatric hospitals. Disability advocates are pushing Congress to incorporate such provisions in broader COVID-19 relief legislation.

The Centers for Medicare & Medicaid Services did not respond to questions about whether the agency is considering expanding the reporting requirements to institutions for people with disabilities.

Read more stories like this one. Sign up for Disability Scoop's free email newsletter to get the latest developmental disability news sent straight to your inbox.