In Special Needs News

Young man and woman with Downs syndrome bake together in kitchen.As of March 2023, states are on the hook to ensure that home- and community-based housing services for its participants are meeting the federal government’s minimum standards. This includes protecting certain basic civil and constitutional rights of the individuals who receive these services.

What Is the Home- and Community-Based Services (HCBS) Program?

The Home and Community-Based Services (HCBS) program, funded by Medicaid, seeks to ensure participants – including seniors and people with disabilities – can access the resources they need in settings that are wholly integrated with the surrounding community and that provide them with privacy, autonomy, and dignity.

Millions across the disability community currently rely on Medicaid HCBS. Hundreds of thousands more – including many with intellectual and developmental disabilities – remain on waiting lists.

A Nearly Decade-Long Delay

For nearly 10 years, disability advocates have been pushing the federal government to enforce its definition of HCBS settings. The HCBS Settings Rule issued in 2014 had specified that these types of settings would be non-institutional – that is, an HCBS setting could not be “a nursing facility, institution for mental diseases, or an intermediate care facility for individuals with intellectual disabilities.”

Yet the deadline for getting states to comply fully with this rule has been pushed back several times – including during the COVID-19 pandemic.

As a result, many individuals were living in so-called community-based settings that received Medicaid funding but were nevertheless operating as institutions, isolating residents from the larger community while limiting their choices and rights. Many people living in such settings also lacked the same baseline levels of protections against eviction that non-HCBS citizens had under standard state landlord and tenant laws.

What Compliance Includes

The March 2023 deadline for meeting the final regulation, implemented by the Centers for Medicare and Medicaid Services (CMS), requires states to guarantee basic rights for Medicaid HCBS consumers.

Complying with the rule – first and foremost – includes ensuring that HCBS settings provide residents with integrated access to the community. In so-called “provider-owned” settings such as group homes, it also means giving participants control over the personal aspects of their lives, such as:

  • Deciding what and when to eat, how to decorate one’s living space, and how to spend one’s free time
  • Having the option to host visitors at any time
  • Choosing one’s roommate
  • Being able to lock their doors
  • Having the protections of a lease or other legally enforceable agreement
  • Being free from coercion and restraint

States that have fallen behind in meeting the regulation by the March 2023 deadline must submit corrective action plans that outline how and when they will comply with the regulation, and the CMS may offer extensions on a case-by-case basis.

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