Months after the end of a public comment period, dozens of disability advocacy groups are pressuring Medicaid to make a final decision on new rules that would define what qualifies as community-based housing.

In a joint letter sent last week to officials at the Centers for Medicare and Medicaid Services, nearly 100 advocacy groups asked the government agency to “move swiftly” on a proposed regulation that would limit the types of qualifying residences under Medicaid home and community-based services waivers.

The proposal, issued in April, called for the exclusion of homes designed exclusively for those with disabilities as well as residences with “regimented meal and sleep times, limitations on visitors, lack of privacy and other attributes that limit individual’s ability to engage freely in the community.”

Medicaid officials say the proposed rules were prompted after they heard reports of homes built on the sites of former institutions that were being labeled “community-based.”

But months after the public comment period closed this summer, Medicaid officials have not yet made a move to issue a final rule, which would be necessary for the regulation to be implemented.

“Any delay is really unfortunate,” says Ari Ne’eman, president of the Autistic Self Advocacy Network, and one of the organizers behind the letter. “We’ve got 95 organizations from across the country on board here and it seems pretty clear that the disability community stands solidly behind a strong definition of home and community-based services.”

Nonetheless, the proposed rules are not without opposition. Among the hundreds of public comments submitted to Medicaid were those from parents who believe that their children would be best served by living in a community of their peers with disabilities.

Medicaid officials say they have no specific timetable for issuing a final regulation.

“We do not have a target date for final publication of the regulation but finalizing it remains a priority,” wrote Alper Ozinal, a CMS spokesman, in an e-mailed statement to Disability Scoop. “We received a substantial number of public comments. While we are not surprised by the level of public input…, we have considerable work to review, categorize, evaluate, consider and respond to each comment, as required.”

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