Proposed Rule Changes to Home and Community Based Services
This is a guest post by Gene Bensinger. Gene is on the Board of the Chicagoland Chapter of Autism Speaks as well as on the Advisory Committee for the Autism Safety Project, and a parent advocate on issues affecting adults with autism.
The Centers for Medicare and Medicaid Services (CMS) will close the comment period at 5pm on June 14th for a proposed regulatory change, CMS-2296-P, which will impact many people with autism in some way. The rule changes are a series of proposals that some in the autism community think may result in less funding and less choice for people with autism. The deadline is fast approaching. Details on the proposals and how to comment can be found here.
The process of changing the rules for Home and Community Based Services (HCBS) waivers has been taking place for a couple of years. Medicaid HCBS waivers are administered by states to fund services in the community rather than institutional settings like nursing homes, hospitals, and large, institutional congregate care facilities.
One thrust of the proposed changes is to allow states to combine “target groups” for waivers. These three target groups, “the aged or disabled or both,” “mentally retarded or developmentally disabled,” and “mentally ill” would be pooled and no longer have a “call” on a specific number of waiver slots. The result of this pooling could be less (or more) slots available for the autism community, but it’s anyone’s guess how it would work out. Combining these three populations appears to introduce a whole host of new issues and uncertainty into the mix. For example, will the needs of a flood of aging baby-boomers demanding scarce resources trump those of people with autism and affect the availability of waiver slots for our community?
Another critical aspect of the proposed rule changes is to define which “settings” are “community-based” (and which aren’t). Funding will depend on the definition embedded in the regulation. I prefer flexibility in rulemaking over rigid litmus tests and find this aspect of the proposal extraordinarily troubling.
Communities can and do come in many shapes and sizes. A wide variety of choices for people with autism strikes me as an essential component of good public policy. Choice should be an incontrovertible right of people with autism and their families, whether or not others in the disability community approve of their preferences. CMS’s proposed definition of what isn’t community based includes many settings that people with autism utilize today. CMS believes that these proposed changes will be good for all people with disabilities, will promote inclusion, and provide regulatory clarity to all stakeholders. I think these changes in policy will more likely limit choices and introduce more confusion about how to fund essential services.
Most people recognize that there’s a big difference between a multi-hundred bed institution and cluster of a few group homes or small campus. These proposed rules will not. Independent living is a great thing and certainly a critical right. However, not all people with disabilities can, or want to, live in totally independent settings. Small campuses can provide an appealing alternative for some and is a meaningful community-based option, not a large institution. The notion that an ideal solution for some is good for all shouldn’t guide policy as it does with these proposals. Choice is a right, too.
*Editors Note: The viewpoints expressed by the author do not necessarily reflect the viewpoints of the Autism Speaks. The purpose of the items posted is to provide relevant, on-topic dialogue among members of the autism community.