On Tuesday, Pennsylvania State University professor Michael Bérubé published an op-ed in USA Today, titled “Don’t Let My Son Plunge Off the ‘Disability Cliff’ When I’m Gone.”
In it, Bérubé, the father of a young man with an intellectual disability, describes the devastating loss of services youths with disabilities face when they leave their K-12 years. He describes his family’s efforts to find an adult life that works for his son Jamie. Bérubé also describes his family’s concerns about Jamie’s future once heand his wife are gone. The family has planned a life for Jamie that includes some days in a sheltered workshop at subminimum wage, plusmore integrated activities on others. Clearly, they have invested a great deal of effort into finding ways to give him a life he enjoys and intend to continue doing so. Someday, however, Jamie will leave home, and when he does, his father does not want him to go into a group home. Bérubé notes that group homes place unreasonable restrictions on their residents.
As an alternative to group homes, Bérubé argues for “intentional communities.” “Intentional communities” are places which “bring together individuals with intellectual disabilities, and caretakers and assistants who are not disabled” and “involve long and short-term volunteer coworkers who live in the villages, rather than rehabilitation professionals on work shifts. They integrate people with intellectual disabilities into communities in meaningful ways, 24 hours a day, 7 days a week.” He concludes, “We must nourish and support these social arrangements; they are a powerful social good.”
Disability advocates note, however, that “intentional community” has become a sanitized word for a well-marketed institution. Activists and others who are involved in the political struggle over Medicaid funding for home and community-based services reacted to the op-ed with dismay. “We have 19,197 people on the Priority of Urgency of Need for Services (PUNS) waitlist [the list of people with developmental disabilities waiting for home and community-based services] here in Illinois, languishing while waiting for waiver services,” Deb Hamilton, the Legislative Affairs Director of Illinois Parents of Adults with Developmental Disabilities and project manager of Illinois Waits told NOS Magazine. “Our large institutions are quite well-funded and the institutional bias inherent in the system has created a dysfunction that you would not believe. Only two states institutionalize more people with developmental disabilities than does Illinois. Misericordia makes this situation worse and the article Michael Bérubé wrote ticked off their talking points.”
Misericordia is a Chicago facility with a 31-acre campus and a number of off-campus group homes which offers residential services to 600 people with developmental disabilities, and along with other groups like Voice of the Retarded (VOR) it is a leader in the struggle over what, exactly, counts as a community-based setting. Misericordia considers itself a “community.” Hamilton says it is an institution.
Outside the disability community, an intentional community is typically formed by a group of people who choose to live together, pooling resources, often based on shared interests or values. Intentional communities have a long history, and many are long-term stable communities, accepting new members as old ones move on.
When it comes to people with intellectual and developmental disabilities, however, the term “intentional community” has come to mean something very different.
In an interview with Thinking Person’s Guide to Autism, Sam Crane, Director of Public Policy for the Autistic Self-Advocacy Network (ASAN), explained that the term “intentional community” is increasingly used “to describe settings that are not really integrated or community-oriented at all. These settings may serve dozens or even hundreds of people with disabilities onto a single, largely self-contained campus. The people developing and running these communities are often well-intentioned people, often with the vision of offering people a ready-made ‘community’ that they can be part of.
“But in practice, they tend to be very isolating. They’re designed so that people have no need to leave the campus on a daily basis except on group trips – people have their job, health care, and daily activities all clustered into the same campus.”
“We’re not opposed to people with disabilities choosing to live with other people who share common values or lifestyle preferences,” Crane said. What we are worried about is when people set up segregated, campus-style housing for people with disabilities under the guise of creating a ‘community.’”
Daniese McMullin-Powell, an organizer with Delaware ADAPT, who works on this issue, made the same point. Staff, she pointed out, are typically the only neurotypical people who live there. But, she stressed, “Neurotypicals are always in charge.”
Where traditional intentional communities are created by and for the individuals who will live in them, and new members are accepted based on the way they are expected to fit in, institutional “intentional communities” for disabled people are created by the people who run them and disabled members are referred because they are disabled and need services. Their admission is often based on how much work they are likely to be for staff. McMullin-Powell described the rules at one institution near her, including, “You must be able to do your care. You must be social. You must be able to provide your own breakfast and lunch. You may have dinner in the big congregate house. They make parents think their loved ones will be cared for when they are gone. The truth is, it looks to me like the rules make it only possible to live there if you don’t even need all that care.”
Being disabled and needing some, but not too many, services, are not the sorts of shared characteristics that promote harmonious living, and an expectation that people will form a community based on them makes no sense. In fact, we know that people referred to housing in this way frequently do not get along.
When Jamie Bérubé’s parents are no longer in a position to meet his support needs themselves, he will need long-term services and supports (LTSS). Much of the funding for housing options for people who need LTSS comes through Medicaid. People who qualify for that funding are entitled to institutional placements. What they are not entitled to is the same supports in the community – those services are optional, which means that the various states may choose to provide them or not to provide them. As a result, there is no waiting list for funding for institutional placements, but there is often a waiting list for home and community-based services (HCBS) waivers, which enable people to pay for the services they need outside of institutions. This results in people with LTSS disabilities being effectively forced into institutions, or institutional bias, and it a primary target of disability activists and advocates seeking the full integration of disabled people into mainstream society.
But not everyone agrees about what an institution is.
In a 2012 paper, “Institutions: Definitions, Populations and Trends,” the National Council on Disability (NCD) mentions the “traditional definition of an institution as a large, usually state-run, hospital-style setting, often located in a rural area. However, according to federal regulations, ICF/DDs [Intermediate Care Facilities for the Developmentally Disabled], which include smaller community-based facilities with populations of 6-16, are also defined as institutions.
“NCD believes that institutional care can exist not just in large state-run facilities but in small community-run small [sic] group homes as well; therefore NCD has defined ‘institution’ as a facility of four or more people who did not choose to live together. This new definition raises the standard and continues the trend toward smaller, more intimate housing situations for people with ID/DD.”
People First of Canada, meanwhile, offers the following definition: “An institution is any place where people who have been labelled as having an intellectual disability are isolated, segregated and/or congregated. An institution is any place in which people do not have, or are not allowed to exercise control over their lives and their day to day decisions. An institution is not defined merely by its size.”
That said, according to an ASAN research brief, authored by Kit Albrecht and Lydia Brown, disabled people living in scattered-site housing “live in apartments or homes located in neighborhoods not specifically intended only for individuals with disabilities. They own or rent housing themselves. Residents live alone or with a small number of roommates. They may receive nursing care, assistance with activities of daily living, and/or other services, but the agency providing those services is not involved in residential provision. In congregate housing, many individuals with disabilities reside in a single housing complex. Typically, residents receive services through the agency that owns the residential facility.”
Scattered-site housing, according to Albrecht and Brown, produces better results: More autonomy, more community integration, more community participation, and more control over their own services. Moreover, settings with lower staffing levels tended to provide residents with greater choices, which is relevant since larger settings are more likely to have round-the-clock staffing even though many residents would not necessarily need that. These are exactly the things that the HCBS waivers were meant to achieve, and therefore scattered-site housing is a better way to use those waivers than congregate housing like campus-based facilities.
In response to concerns that institutional settings were claiming to be community-based and were taking HCBS funding that should have gone to actually integrating people into the community, the federal Centers for Medicare and Medicaid Services issued the Home and Community-Based Services (HCBS) Final Rule on settings in 2014 to define which settings are institutional and which are community-based.
Since then, parents of people with intellectual and developmental disabilities who want their children to live in large congregate settings and owners, administrators and employees of large congregate settings have been pushing back. “There is a group that has engaged a law firm in Washington, DC, to bring a suit against the Centers for Medicare and Medicaid Services to amend the Rule so they can use Medicaid HCBS dollars to pay for services in these institutions,” McMullin-Powell says. These groups argue that the protections disability rights activists and advocates fought so hard for are too strong, and that families and service providers should be able to spend money earmarked for home and community-based settings wherever they want.
The Trump administration seems supportive of that idea. Last year, Ari Ne’eman, writing for the American Civil Liberties Union, reported that Tom Price, then the Secretary of Health and Human Services, and Centers for Medicare and Medicaid Services Administrator Seema Verma had issued a letter indicating their intent to delay the implementation of the Final Rule and back off federal enforcement. “That’s a problem,” Ne’eman wrote. “Basic freedoms like choice, autonomy and privacy in one’s own home shouldn’t be subject to the whims of state legislators.”
People who want to live in congregate facilities already can. That right is well-established in law and any institution that qualifies for funding as an Intermediate Care Facility can get paid for Medicaid LTSS clients it admits. But the “intentional communities” and other similar institutions like farmsteads, don’t want to apply for that sort of funding because they want to be able to market themselves as communities rather than institutions.
Because of institutional bias, there are limits on the number of HCBS waivers. That’s why there are such long waiting lists. According to the PA Waiting List Campaign, there are currently 13,614 people with intellectual disabilities alone waiting for HCBS waivers in the Bérubés’ home state of Pennsylvania. If funding earmarked for home and community-based services goes to pay for institutional placements, it will reduce the availability of true home and community-based services from an already inadequate number to a much lower one and even more people will be stuck in limbo, waiting for years for the services they are desperate for, while there are already no waiting lists for funding for institutional placements to be shortened. “The ‘intentional communities’ should apply for the money allocated to institutions and stop trying to take our HCBS,” ADAPT’s McMullin-Powell told me.
To supporters of disability rights, the entire point of the HCBS waiver is to enable people to move from settings in which they are segregated and denied privacy and control over their lives to integrated settings where they are more in charge. The grouping together of disabled people, known as congregation, on campuses is associated with poorer outcomes by those standards. Even group homes, where multiple individuals share the same staff and therefore residents’ needs and wants must be balanced, represent a significant limitation on self-determination and can limit integration.
Disability advocates say that the greatest need for housing and support services is for people with the greatest support needs. States are shipping disabled people to the Judge Rotenberg Center in Canton, Massachusetts because they don’t have other options. Florida is having a difficult time shutting down Carlton Palms because it cannot find other placements for the people there. Making it easier to spend the limited HCBS funds we have on people who already have the greatest housing options, in settings where they would already qualify for other funds, does not help people with higher support needs.
It’s understandable that Bérubé is looking for options that work for his family, and it’s understandable that he is dissatisfied with group homes. However, it seems that his solution is misguided. Renegotiating the HCBS Final Rule in the current political climate will inevitably result in a loss of real community-based settings. Many community-based settings still operate as small institutions, with programs designed and run by service providers . Disabled clients are expected to mold their lives to fit these services rather than customized services being developed around the wants, needs, and chosen lifestyles of the individual service users. Many HCBS group home clients are still not socially integrated into the communities within which they live. They have too few chosen, reciprocal friendships with their neighbors. Disability rights advocates point out that we need to be moving forward, not backward. Using HCBS waiver funds to retreat to large-scale congregate institutional care on campuses is not good policy.
At least some of these “intentional communities” seem to represent a real step forward in large-scale congregate care. The Camphill communities, for instance, which Bérubé mentions admiringly, have a good reputation among those NOS Magazine spoke to. They should be encouraged to qualify for Intermediate Care Facility funding in order to provide options to people languishing in older, worse, institutions. But since Bérubé’s op-ed rehashes the argument of those seeking instead to reopen the Final Rule and allow “intentional communities,” farmsteads and other institutional settings to qualify as community-based, it is unlikely that this is what he means by “We should nourish and support [them].” Rather, he appears to be arguing for policy changes that would roll back the integration of people with disabilities into mainstream society.
“Segregation and restrictions on self-determination of a minority group should be resisted,” says Deb Hamilton. “The Final Rule should only be changed to promote greater integration and self-direction.”