The Politics of Autism explains that autism services can be complicated, creating difficulties for autistic people and their families.
In the United States, a debate about how and where to house adults with autism is dividing autism advocates. New rulings from the Center for Medicaid Services, which oversees the public health care insurance program for people living in poverty or with disabilities, has thrown this debate into sharp relief. The revised rules require that long-term care facilities paid through Medicaid waivers—a common financing mechanism to support adults with disabilities—house no more than four people, be dispersed in communities, and offer significant freedom of access to their residents (https://www.regulations.gov/document?D=CMS-2008-0035-0058). Many autism advocates have hailed this ruling as a civil rights victory in the service of inclusion and community participation. An equally vocal group is very concerned that this funding arrangement will make it difficult for more severely impaired adults who need round-the-clock care to find adequate housing.
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Clearly, we need more research on the effects of different housing arrangements on outcomes for adults with autism. Residential care is the single largest cost over the lifetime of individuals with autism (Buescher et al., 2014); decisions about this type of care may have the most profound effect on their well-being and happiness. Right now, our decision-making regarding which types of placements to pay for and prioritize is based on values rather than data. And, the dichotomy between community placements and more segregated settings may not be the most useful dimension to value or to measure. Perhaps, we should instead consider two other factors: have we maximized happiness, health, safety, and community engagement for that individual (Orsmond et al., 2013)? And, returning to one of the original reasons for deinstitutionalization, have we maximized the observability of care, so that we can be confident of its quality?
I am not naïve to the challenges implied by these two metrics. Measures of happiness and life satisfaction, especially for those adults with whom we have difficulty communicating, are very poor (Shattuck and Roux, 2013). Community engagement is a fuzzy construct. Does a heavily supervised visit to the mall with little interaction with others count as engagement? Should we instead identify social capital as a more meaningful construct (Mithen et al., 2015)? What systems, regardless of where housing is located, should be used to monitor quality of care?
Debating and conducting research on the relative merits of different residential settings is important, but not a substitute for focusing on what care is delivered and what opportunities are available in these settings. Incentivizing community-based housing will make care more consistent with many of our societal values and will combat our society’s dangerous tendency to move toward more restrictive settings when they are available, even when it is not in the best interest of the individual. It will not, however, address more fundamental concerns about community participation and observability of care and has the potential to leave more severely impaired individuals behind.
