Amy Lutz, an autism parent and author, has written an article for her Inspectrum blog in Psychology Today called, “Ideology, Not Data; Studies fail to support the case against intentional communities”. She took exception to a recent blogpost by Ari Ne’eman, the founder of the Autism Self Advocacy Network (ASAN), “...depicting those of us who believe that more choices are better—virtually all the time, but particularly when it comes to residential and vocational options for the intellectually and developmentally disabled—as ‘fringe’ and ‘pro-institution.’” ASAN and other advocacy groups claim that their public opposition to farmsteads, intentional communities, and other larger residential settings is “overwhelmingly” supported by research.
Lutz took the next step in this controversy and read through the research cited by these advocacy organizations. She found that the studies are plagued with methodological flaws and their conclusions are sometimes the opposite of what the advocates would have us believe -- that intentional communities have many benefits over dispersed settings.
Among the many problems with the research is that the worst institutions of the past that housed thousands of people, many of whom had mild impairments, are used as the baseline to compare current settings. She also finds Inconsistency in defining key variables, such as size of the setting, the degree of disability of the individuals involved, and the variety of ways that settings are characterized:
“A final difficulty in assessing the research is the tremendous impact that degree of impairment has on this entire debate. Studies consistently report that residents of residential campuses score lower on IQ and adaptive functioning scales, and engage in more challenging behavior, including aggression and self-injury—factors that likely determined their placement in more restrictive settings in the first place….”
Lutz also addresses the ideology behind the movement to push all adults with DD into smaller dispersed settings that is motivated by the goals of social justice, inclusion, and combatting discrimination, often at the expense of individual needs and choice:
"…While Emerson’s concern [referring to an article by Erik Emerson] for social justice is noble, perhaps he might reconsider sacrificing the right of our most vulnerable citizens to choose where and with whom they live—a right I doubt he would relinquish for himself—to his vision of what an inclusive society looks like. Because if the 'subjective wellbeing' of my son and his peers isn’t important to Emerson, it is vitally important to them, as well as to parents such as myself, friends, providers, professionals and virtually any stranger on the street—who, if asked, would almost certainly agree that happiness is what all of us want, for all our children. Hardly a position to be dismissed as 'fringe.'"
Read the full article and pass it on.
Also by Amy Lutz: “Who Decides Where Autistic Adults Live?”