NCSA Position Statement

[Note: A few months after this Position Statement was adopted, CMS issued a revised Guidance, discussed here. NCSA will issue a revised Position Statement soon.]

Medicaid HCBS Residential Policies

Our nation is facing an acute and growing affordable autism housing crisis. Many children and adults with severe autism cannot live safely in their family homes, and require alternative placements for which there are lengthy and growing waitlists. More fundamentally, the vast majority of severely autistic adults will outlive their parents and require specialized, supported residential solutions for the duration of their lives. This is a diverse population, with a broad range of needs and preferences, and this diversity must be represented in the range of residential settings available. Yet, rather than eliminating barriers to the creation and growth of a variety of service models, federal and state housing policies often compound them. It is imperative to re-examine current challenges and obstacles in order to ensure the expansion of capacity for individualized, person-centered models. To that end, we support the following measures:

  • Centers for Medicare and Medicaid Services (CMS) regulations should maximize allowable settings eligible for Home and Community Based Services (HCBS)

HCBS is an essential funding source for day, residential and support services for individuals with autism and other intellectual and developmental disabilities. In January 2014, CMS released the federal Final Regulations, which created an “outcome-oriented” final rule defining what types of programs and services HCBS would fund. The CMS HCBS Setting Fact Sheet states as follows: “In this final rule, CMS is moving away from defining home and community-based settings by ‘what they are not,’ and toward defining them by the nature and quality of individuals’ experiences. The home and community-based setting provisions in this final rule establish a more outcome-oriented definition of home and community-based settings, rather than one based solely on a setting’s location, geography, or physical characteristics.”

While the final rule was encouraging for those who support individual choice, CMS subsequently issued troubling guidance on March 17, 2014. The guidance listed several types of settings that would be presumed isolating and subjected to heightened scrutiny (a bureaucratic review process): farmsteads or disability-specific farm communities, gated/secured communities for people with disabilities, residential schools, and multiple settings co-located and operationally related. This guidance both imperils existing quality programs and sharply restricts the development of safe, robust, and clinically necessary programs and models. Most at risk are those with severe disabilities who may require options such as campus settings and disability-friendly amenities. Individual apartments and small group homes – which CMS does not subject to the process of heightened scrutiny – can be inadequately structured, devoid of safety measures, and dangerous for many individuals with severe autism and I/DD. 

More basically, the guidance wholly ignores individual choice and person-centered planning. Many people – autistic or not – choose to live in peer-specific communities, including retirement developments, college dormitories, religious enclaves and others. CMS has failed to provide any evidence that individuals with intellectual and developmental disabilities enjoy greater access to the outside community or have increased quality of life in smaller settings, which themselves can be lonely and isolating. A true person-centered approach – one that matches needs and preferences to services and settings, while rigorously monitoring outcomes –  must be the primary driver of HCBS funding eligibility.

  • Narrowly limit “heightened scrutiny” imposed by the HCBS rules

CMS should clearly and explicitly support all settings that provide community access regardless of size, location or residential model. Retracting the March 2014 guidance and issuing new guidance limiting heightened scrutiny is a critical step toward growing capacity, honoring individual choice, and respecting the person-centered mandate of the final rule. Currently, heightened scrutiny is an arbitrary, unregulated process, completely lacking written procedures and standards for review. Instead of being wielded as a weapon to defund or derail essential services for individuals with severe autism, NCSA believes that heightened scrutiny should be re-conceputalized as a form of protection for disabled individuals when their needs and preferences, as articulated in their person-centered plans, are not being honored. Heightened scrutiny should increase, not decrease, the availability of quality settings and outcomes.

Adopted by NCSA Board of Directors December 10, 2018

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