Ideology, Not Data

Yesterday, Ari Ne’eman published a stunning post on his blog 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.” He claimed that research “overwhelmingly” supports his very public opposition to farmsteads, intentional communities, and other larger residential settings—a position previously echoed by other organizations, such as the American Association on Intellectual and Developmental Disabilities (AAIDD) and the Association of University Centers on Disabilities (AUCD), which jointly issued a paper in 2015 claiming that “five decades of research” prove that “any residential settings supported with CMS funds must be inclusive.”

So what did I do? Well, I finally read all those studies cited by Ne’eman, AAIDD and AUCD. And I really, really hope that policy makers and other stakeholders take the time to examine them closely, as well as other pertinent papers they didn’t cite—not always an easy task, as they can cost upwards of $50 to access, each. But it’s important, because the data simply don’t support such extremist positions.

The first problem with some of the studies is their relevance to the policies under consideration by CMS and state disability offices. The AAIDD and AUCD report states, “Three decades of deinstitutionalization studies have found that people who move from institutions to smaller community settings are happier,” citing Willowbrook and Pennhurst as examples of the “large, segregated, isolated institutions of the first half of the 20th century.”

These findings are hardly surprising: Such institutions were filled with mildly impaired inmates who were confined primarily for the free labor they provided. Doubtlessly, most thrived in less restrictive environments. But the biggest red herring in this entire debate is the use of Willowbrook or Pennhurst as some kind of baseline to which current settings are compared. Because no one is advocating a return to such snakepits. The farmsteads, campuses and intentional communities that have been creatively rebranded as “institutions” by ASAN and other inclusion zealots actually share none of the characteristics that made those original facilities so inhumane, including untenable staff-resident ratios (Willowbrook’s was 1:40); dangerously overcrowded conditions (Willowbrook housed 6000 kids with I/DD in a building meant to hold 4000); complete lack of access to the greater community; and, perhaps most heartbreaking of all, an ultimately custodial mission designed purely to protect the public from the criminal and moral threat posed by the “feebleminded.” Rejecting these options simply because of Pennhurst’s atrocities is like refusing to see a doctor today because you don’t believe in leech therapy.

A second problem with the studies is that key variables are not clearly or consistently defined. As Renata Ticha and her colleagues pointed out in their 2013 study, “Different researchers (who work together) have been using a different conceptualization of residential settings…Such differences in the conceptualization of variables are a hindrance in comparing results across studies.” For example, some researchers (Ticha, Lakin et. al. 2012; Lakin, Doljanac et. al. 2008) categorized larger settings exclusively by size, while others attended to the very different types of residences, including intentional communities, clustered homes, and government–run residential campuses.

Such distinctions, as it turns out, are critical. When researchers analyzed these models, they found significant differences among them, despite their similarity in size. Unsurprisingly, the government-run residential campuses—i.e. developmental centers or Intermediate Care Facilities (ICFs)—performed the worst on many indicators, including community access and choice-making. But Irish researcher Roy McConkey reported in a 2007 study that intellectually and developmentally disabled adults who lived in supported, clustered homes (defined as “specially built groupings of houses or apartments on the one site with shared staffing,” typically serving an average of 15 tenants) actually had “greater levels of social inclusion as measured by their use of community amenities and social contacts than did those in small group homes,” and concluded that “there were few differences” between clustered and dispersed (i.e., individual houses and apartments in the greater community) models of supported living. Similarly, an Australian team reported in 2000 that village communities for adults with I/DD (which “typically consist of a cluster of living units and other resources (e.g., day centers, shops, churches) that are physically segregated from the local community”) offer “a distinct pattern of benefits” as opposed to dispersed models, including “size of social networks, reduced risk of exposure to verbal abuse and crime [and] greater number of days and hours per week of scheduled day activities.” Furthermore, village communities and dispersed housing scored equivalently on indicators such as choice-making and satisfaction—unlike residential campuses, which were more institutional. Clearly, size alone does not determine outcomes.

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. And while many researchers try to statistically control for these differences in comparing outcomes among settings of different sizes, Robert Cummins and Anna Lau point out that this approach is inherently flawed: "Consider a study that compared pensioners with socialites on the extent of their social networks. Intuitively it would be reasonable to expect the social networks of socialites to be larger. But suppose that the researcher who performed this study recognized that the two groups differ in many ways, and wished to control for these sources of variance…In particular, the researcher noted, socialites are wealthier, have greater access to transport, are better educated, more articulate, and healthier. Then, suppose that when these measures were controlled, there was no difference between the groups. How is such a result to be interpreted? The fact is, it cannot. The statistical procedure has systematically destroyed the group difference.” What follows from such statistical manipulation is often an inexcusable confusion of correlation and causation, such as the 2015 overview published by the Institute on Community Integration (UCEDD) and Research and Training Center on Community Living that concluded “those who live in their own home [had] the greatest amount of choice compared to those living in an institution, community residence, family home or foster care,” without acknowledging that only those adults with the mildest levels of intellectual disability are capable of living in their own home, or considering that level of impairment could be the more powerful reason behind the reduced choice-making, not the type of setting (an influence that has been reported in many studies, including in that of Lakin and Doljanac, who found that “Level of intellectual disabilities was a strong predictor of everyday choice”).

If stakeholders do read these studies, they will see for themselves that the movement to push all adults with I/DD into small, dispersed housing is based on ideology, not data. At least prolific researcher Eric Emerson is upfront about why he opposes most larger settings, even if some people might prefer them. He wrote in 2004, “The problem I have with this trend [of person-centered planning] is that it actively draws attention away from considerations of issues relating to social and distributive justice…I strongly believe that the fundamental aim of public policy should be to reduce inequality, discrimination and social exclusion. Within this framework the measurement of subjective wellbeing is of peripheral interest.” While Emerson’s concern 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."