"Who Decides where Autistic Adults Live?" Autistic adults and their families or the State?

“It seems pretty simple: community good, institutions bad. But these two terms have proven extraordinarily difficult to pin down.” ... Amy Lutz

Amy Lutz, the mother of a 16-year old with severe autism,  has written an article for Atlantic.com, “Who Decides where Autistic Adults Live?” She covers the controversy over the use of Home and Community-Based Services (HCBS) Medicaid funding for settings that the federal government may deem too institutional in nature or too isolating and segregating. Specifically, she is writing about the use of Medicaid HCBS Waivers (called the Habilitation Supports Waiver - HSW - in Michigan) for individuals who but for the provision of such services would require the level of care provided in a hospital, a nursing facility, or an intermediate care facility for Individuals with Intellectual disabilities (ICF/IDD). 

Lutz begins with a description of the Bancroft Lakeside Campus in New Jersey, seemingly ideally suited to the people living there. It may, however, become a victim of the new HCBS settings rule issued in 2014 by the federal Centers for Medicare and Medicaid Services — “Large group homes, farmsteads, and campuses like Lakeside all face possible exclusion.”

The argument over what size a setting should be to receive HCBS funds sounds technical, says Lutz, but “…it touches on a larger question: While many Americans may never need food stamps or unemployment, virtually everyone eventually benefits from Social Security and Medicare. What level of control should the government have over how these subsidies are used? In the case of disabled adults, who should decide what kind of housing best suits their needs? Should it be those individuals and their families, or should it be the state?” [emphasis added]…

Lutz goes through the evolution of institutional care from fifty years ago and emerging alternatives. The 1999 Supreme Court Olmstead Decision determined that unjustified isolation is discrimination based on disability under the Americans with Disabilities Act. Lutz is careful to note, however, that:

“Even advocates of community integration agree that developing meaningful relationships with non-disabled neighbors can be 'a challenge,' as Ari Ne’eman [President of the Autism Self Advocacy Network] put it, and this is especially true when it comes to the most severely afflicted. It’s not a small group: A 2013 study found that over half of autistic kids exhibit aggressive behaviors, which vary in intensity but can be very difficult to treat and tend to continue into adulthood.

"Perhaps it was this population that Supreme Court Justice Ruth Bader Ginsburg was worried about when she carefully crafted her opinion in the 1999 Olmstead case to make it clear that community inclusion might not be right for everyone. Such integrated settings, she wrote, should only be required 'when the State’s treatment professionals have determined that community placement is appropriate' and 'the transfer from institutional care to a less restrictive setting is not opposed by the affected individual.' In other words, forcing developmentally disabled individuals into dispersed community settings that don’t meet their needs is as much a violation of Olmstead as forcing them into institutions." [emphasis added]

This is a long article with many references to innovative programs that use HCBS funds but are now threatened by proponents of an ideology who will not tolerate anything short of “full integration in the community”. Defining what this means, however, has proven difficult, and is most often defined superficially in terms of how many people with disabilities live together and their proximity to people without disabilities.

Amy Lutz is the president of the EASI Foundation, Ending Aggression and Self-Injury in the Developmentally Disabled - “Living with dangerous behaviors is never easy. Finding help should be.”

See also: Olmstead Resources and the Coalition for Community Choice