Choice v. Olmstead: The Medicaid Debate Over Community Living

HENDERSON, Nevada (Dec. 14, 2011) – A highly-emotional debate over freedom of choice versus obligations under a landmark U.S. Supreme Court ruling is dividing the disability community regarding proposed changes to a key Medicaid waiver that is the primary funding safety net for persons with disabilities including autism, according to a new report by LTO Ventures.

The “choice” versus “Olmstead” debate also has huge implications when it comes to who gets to determine what qualifies as Medicaid-eligible settings, according to report author Mark L. Olson, president and CEO of LTO Ventures and chairperson of the Community Living Subcommittee of the Nevada Commission on Autism Spectrum Disorders.

“At stake is nothing less than the future of essential residential and supportive services for hundreds of thousands of adults with Autism Spectrum Disorder as well as adults with intellectual, developmental and other disabilities,” Olson said.

The report, released on the LTO Ventures website, examined the public comments submitted in response to the publication of the proposed new rules in the Federal Register.

At the heart of the debate is the 1999 Supreme Court ruling in Olmstead v. L.C. [527 U.S. 581] that held that unnecessary segregation and institutionalization of persons with disabilities is a form of discrimination and prohibited under the Americans with Disabilities Act.  The ruling was a giant step forward in the advancement of choices in housing and services for millions of people with disabilities.

Efforts by the Centers for Medicare & Medicaid Services (CMS) since 2009 to redefine under the Home and Community-Based Services (HCBS) Waiver what constitutes “community living” and “home and community-based” settings threaten to severely constrain choice and access to funding that could result in disastrous public policy that reverberates for decades.  An estimated 25 percent of existing eligible residential settings would not meet the new CMS criteria, and tens of thousands of disabled individuals could be forced out of their residences.

The report found the choice side is comprised primarily of the disabled individuals served by the waiver, their parents, caregivers, providers and many state Medicaid agencies and administrators.  They contend that narrowing the definition of an eligible setting would have a chilling effect on innovation in housing models and financing mechanisms, public and private, would unfairly impact the development of residences suitable for the tens of thousands of disabled adults who need them, and would balloon already bloated waiting lists nationwide.

The report found the Olmstead side comprised primarily of CMS itself, and affiliated disability advocacy organizations, including the Protection & Advocacy/Client Assistance Programs (P&A/CAP) Network created by Congress with special federal and state authorities to advocate for people with disabilities.

CMS Administrator Donald M. Berwick and these disability advocates contend they are only following their obligations under Olmstead. They maintain that only living situations that closely or exactly mirror those of nondisabled persons fulfill the intention of the Supreme Court and the Americans with Disabilities Act, and that federal and state funding under HCBS waivers should only be used for such settings.

CMS itself is not unified in its opinion, however. Agencies and officials responsible for administering the Medicaid program in 14 states filed a joint public comment opposing the changes proposed by Berwick.

The community at risk includes almost 123,000 disabled people on waiting lists for Medicaid-eligible residential services, an increase of almost 71% over the same waiting lists in 2000, the first year after the Supreme Court Olmstead decision.  In many states, the length of time eligible individuals have languished on waiting lists exceeds ten years.  And it is projected to get much worse.  Data from the Centers for Disease Control and Prevention and Autism Speaks estimate that more than 500,000 individuals under 22 years of age with an Autism Spectrum Disorder will reach adulthood by 2024 and join the market for housing and services.

The report concludes that the objective of the CMS rule-making process and this debate ideally should be to produce an outcome that expands inventory and choices and removes barriers to innovation and investment in residential settings desired by adults with autism and intellectual, developmental and other disabilities.  At the very least CMS must “do no new harm” and choose not to include proposed new paragraphs to the Medicaid HCBS Waiver regulation.

Read the Full Text of the Report The complete report is available and downloadable at: