U.S. Representatives raise concerns about restrictions on group settings for people with disabilities

Three U.S. Representatives wrote a letter to the Centers for Medicare and Medicaid Services (CMS) on 11/27/17 to ask for changes in guidelines for the federal 2014 Home and Community-Based Settings rule. John Faso (R-NY), Jackie Rosen (D-NV), and Raja Krishnamoorthi (D-IL) expressed their concern that the “Guidance on settings that have the effect of isolating individuals receiving HCBS from the broader community” unfairly discriminates against “disability-specific, congregate, farmstead, and lifesharing communities” and that the guidance "reflects a fundamental misunderstanding of how [such settings] operate,"

Many innovative housing projects and planned communities for people with disabilities have been developed in recent years, only to be threatened by a loss of Medicaid funding to pay for services in settings that are deemed by CMS too much like institutions. Such settings may be acceptable to CMS only after going through a process of “heightened scrutiny” to assure that they are integrated into the broader community. Individuals and organizations supporting these housing options have questioned the CMS requirement, saying that CMS lacks the authority to limit the choices of people with disabilities in determining where they want to live. [see the Legal Vulnerabilities of the HCBS settings rule]

The letter from the U.S. Representatives goes on to say,

“We are particularly concerned that the guidance may have the unintended impact of discouraging and ultimately phasing out congregate and lifesharing models which promote individual independence, community integration, and enhanced quality of life for all served by these communities. …In subjecting these communities to a heightened scrutiny standard, CMS has introduced significant uncertainty to the future of these communities.

“By painting all congregate and farmstead communities with a broad brush, CMS threatens to remove a critical choice from individuals looking for a setting that provides individuals with a community that supports inclusion, not seclusion. We applaud CMS’ intent in the 2014 final rule to protect patient choice and dignity, but urge CMS to revise its subsequent guidance to clarify that congregate and farmstead communities based on the lifesharing model are not subject to the heightened scrutiny standard. We understand that these communities would welcome third party certification (such as the Center for Quality and Leadership) as an alternative to the current broad brush policy.”

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More resources: The Coalition for Community Choice ; Together for Choice; Madison House Autism Foundation