Home > Family Services > Proposed Rule Changes to Home and Community Based Services

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.

Gene Bensinger

Parent Advocate


*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.


  1. Christine Gregoire
    June 9, 2011 at 12:15 pm

    I am a mother and my son will soon be turning 22 and the State of Mass will no longer provide services for my Autistic child, because even though he is 22 anyone that has a child with Autism knows they are way behind their age. I think that Government is sending the wrong message to families that are caring for their disabled children. They don’t want to pay to keep child safe at home, I guess they would rather place them in group homes, if they are even available. It’s time to send a clear message to Washington and local government to cut other programs that are being abused and take care of children that did not ask to be born with Autism. I for one am sending a clear message to Washington with my vote come election year. Get out and move on!

  2. sabrina
    June 9, 2011 at 2:41 pm

    I have two sons with severe autism ages 6 and 4, my 6yo recives ihhs. how would this impact them?

  3. June 9, 2011 at 3:03 pm

    LTO Ventures submitted and published comments opposing the rule change — http://issuu.com/ltoventures/docs/comment_to_cms_on_cms-2296-p_hcbs_waiver__060311?viewMode=presentation. LTO Ventures develops live/work/play communities for ASD adults.

    Our view is the outcome of this rule-making process should not be to arbitrarily limit options and reduce choices. It should produce an outcome that expands choices and removes barriers to innovation and investment in residential settings desired by ASD and developmentally disabled adults. We encourage CMS to facilitate development of the broadest range of choices to address the varied needs and desires of the Americans they are meant to serve, and let the market decide what settings should prosper:

    • Separate Funding for Services from Funding for Housing. HCBS Waiver funding for housing must be separated from funding for support services. Until that fundamental change is made in the program, CMS is failing to address the real concerns of affected individuals.

    • Competitively Compensate Direct Care Professionals. The average hourly rate of pay for a licensed Direct Care professional is Nevada is $8.50 per hour. These dedicated individuals are responsible for the care of often severely-affected persons, yet they are paid less than a high school student working at Starbucks. Staff turnover at facilities in Nevada is more than 50 percent annually. This significantly increases the cost of care, and unnecessarily creates discontinuity and disruption that affects the quality of care of affected individuals.

    • Encourage Housing Innovation. CMS should be creating opportunities for, and removing barriers to, development and construction of innovative new housing settings including, but not limited to: farmsteads, mixed-use campuses, urban redevelopment, and home clusters.

    • Encourage Private Financing. CMS should be creating opportunities for, and removing barriers to, development of and access to private and public-private financing that would offset, complement or replace public funding and accelerate development and availability of housing to reduce waiting lists, create jobs, improve pay and provide higher quality services.

  4. Kevin Johnson
    June 9, 2011 at 3:45 pm

    Did you post public comments in opposition to the proposed rule? I think your assessment of the narrowing of Home and Community Based Settings is correct, and the design of communities is best left up to the States.

    • Gene Bensinger
      June 13, 2011 at 12:54 pm

      I did post a public comment opposing these choice limiting proposals on behalf of the consortium Agricultural Communities for Adults with Autism (ACAA). http://www.ac-aa.org

  1. June 10, 2011 at 11:35 am

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