Feds Once Again Delay Rule to Help People with Disabilities Remain Part of Their Community

The Trump administration has, for the second time, delayed compliance with new regulations designed to ensure the independence of people receiving services through Medicaid-funded Home and Community Based Services (HCBS) waivers.

HCBS waivers are Medicaid’s primary program for ensuring that people with severe disabilities remain integrated in their communities, and are not unnecessarily institutionalized.  Nationwide, nearly one million people receive services under state HCBS program.

Although states must obtain approval from the Department of Health and Human Services (HHS) to provide HCBS services (and thus obtain waivers), HHS has traditionally given states almost complete discretion to determine what qualifies as a home and community based service.  This has resulted in some waiver recipients failing to be active and included members of their community with control over their own lives.

The Obama Administration finalized regulations in 2014, setting national standards for such services. The regulations, called the HCBS Settings Rule, require HCBS providers to ensure that recipients have full access to their community and independence in their day-to-day activities, including whom they can interact with and choices about their physical environment. Providers must also ensure that recipients have privacy in their daily living services and otherwise live in settings analogous to a regular home, as opposed to a nursing home or more institutionalized facility.

Furthermore, the regulations mandate that providers engage in “a person-centered planning process that addresses health and long-term services and support needs in a manner that reflects individual preferences and goals,” according to a 2014 HHS fact sheet.

The regulations gave states until 2019 to come into compliance, at which point HHS could withhold funding for programs 

The Trump administration first delayed the regulations by three years in March 2017, to March 2020.

Citing the COVID-19 pandemic, the administration announced in a letter to state Medicaid officials on July 14, 2020, that states will now have one additional year to comply, until March 17, 2023.

“States’ stay-at-home and/or safer-at-home orders and the process of social distancing have made it difficult, if not impossible, for states to accurately evaluate how an individual is experiencing community integration in current HCBS settings,” wrote Calder A. Lynch, deputy administrator and director of the Center for Medicaid & CHIP Services, in the letter. “These necessary directives have seriously impacted not only the measurement of community integration for individuals, but the intent of the settings rule to ensure that individuals with disabilities and older adults have the opportunity to be active participants in their communities.”

Disability rights advocates, however, strongly condemned the move. In a July 14, 2020, statement, the HCBS Advocacy Coalition said that the pandemic has only increased the need for the Settings Rule.

“While CMS invokes the COVID-19 pandemic as justification for extending the Settings Rule, we disagree,” the advocacy groups stated in the letter. “In fact, the current crisis makes the need for strong implementation of the Rule, and the provision of home and community-based services, even more clear. The COVID-19 pandemic has laid bare the risks of large congregate settings and made the Rule’s focus on more individualized supports in smaller and non-disability specific settings more important than ever.”