Lawmakers are pressing the Trump administration to track COVID-19 among people with disabilities living in group homes and institutions, where more than six months into the pandemic cases are still largely going undocumented.

Three U.S. senators are calling on the Centers for Medicare & Medicaid Services to start collecting and reporting data about the number of coronavirus cases in a broader array of congregate settings — including those serving people with disabilities — by the end of the month.

Currently, CMS requires nursing homes to report COVID-19 cases to federal officials and notify residents and their families, but no similar mandate exists for other types of congregate settings even though their residents also face a high risk of transmission. Advocates have been pressuring Medicaid officials for months to institute similar procedures for facilities serving people with disabilities, but CMS has remained mum on the issue.

“Despite the high risk of contracting COVID-19 for older Americans, children and adults with mental illness, and children and adults with disabilities living in or receiving services in congregate care settings, there are huge gaps in federal reporting requirements for these facilities,” wrote Sens. Patty Murray, D-Wash., Maggie Hassan, D-N.H., and Elizabeth Warren, D-Mass., in a letter to CMS Administrator Seema Verma. “As a result, federal government officials, public health experts, and the public have no comprehensive information on COVID-19 occurrence and fatality rates in various congregate care settings — all while residents continue to face a significant public health threat.”

The request comes as the country sees a new surge in coronavirus cases amid an ongoing pandemic that has disproportionately affected those with developmental disabilities. Research shows that people in this population who are living in group homes are significantly more likely to contract the virus and die from it as compared to others.

Nonetheless, the senators indicated in their letter that a review of state-level requirements across the nation found that only nine states are reporting on COVID-19 cases at institutions for people with disabilities, seven report on group homes and just one is reporting on day facilities for those with disabilities.

The lawmakers said that even in cases where CMS does not have the authority to impose requirements on the facilities themselves, the agency should use its regulatory power to set “standardized, comprehensive COVID-19 reporting requirements on states to collect data across different types of congregate care settings in which providers participate in Medicaid.”

The senators are asking CMS to act by Oct. 30, but so far, Murray’s office indicated that the lawmakers have not received any reply.

CMS told Disability Scoop that it would respond directly to the senators. The agency noted that in many states COVID-19 transmission in group homes is considered a “critical incident” and, in those cases, such data would be included as part of regular quality assurance reporting to the federal government.

However, CMS acknowledged that it is not undertaking broad efforts to track COVID-19 across congregate settings serving people with developmental disabilities.

“Intermediate Care Facilities (ICF) for Individuals with Developmental Disabilities (IDD) and waiver-funded group homes ICF/IDDs are not covered by CMS’s coronavirus disease 2019 (COVID-19) data collection efforts,” the agency said. “They are under a different regulatory authority. These facilities are funded fully by Medicaid, which is a state-managed program.”

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.