This is one in a mini-series of posts exploring the state of mental health care in America, and how to fix it.
You may not know it, but there's a huge fight going on that affects the future of everyone with autism and/or intellectual and developmental disability (I/DD).
Right now, adults with these diagnoses, their families, providers, advocates and government officials are clashing over pending state regulations that threaten to severely restrict the residential and vocational settings available to this population. The de-institutionalization pendulum, as it's often called, has swung so far that many states have begun pushing full community inclusion even on those who don't want it (because of sensory sensitivities, a desire to live with peers in a disability-specific community, or any number of reasons) or who suffer from challenging medical and behavioral needs that can't safely and adequately be met in small, integrated settings.
Earlier this year, as I – the parent of a son, Jonah, with severe autism – was immersed in this battle, I was surprised to see help emerge from an unexpected source: three bioethicists from the Penn Department of Medical Ethics and Health Policy, who published an article in the Journal of the American Medical Association arguing the need to, as they provocatively subtitled their piece, "Bring Back the Asylum."
The authors – Dominic Sisti, Andrea Segal and Ezekiel Emanuel – focused on people with intractable psychiatric disorders, not individuals like Jonah. But their description of a population "unable to care for themselves, and potentially dangerous to themselves and the public" applies just as well to those with profound autism and/or I/DD, which are often accompanied by aggressive and self-injurious behaviors that can be very difficult to manage. And their claim that "even well –designed community-based programs are often inadequate for a segment of patients," provided an academic and philosophical buttress to parents arguing against state regulations that would forbid their children from using their Medicaid funding to live in all congregate settings, including farmsteads, campuses and intentional communities.
I've been involved in some pretty contentious debates within the autism community, but I have to say I just don't get this one. Why on earth should parents have to defend the need for a broad range of settings to reflect our children's very broad range of impairment? I can only assume that those who insist that inclusion is right for everyone have never tried to keep someone from screaming all night, punching himself in the face until he goes blind, banging his head against the wall or floor until he suffers a traumatic brain injury, unpredictably attacking family members, staff, or even random members of the community, or running away from caregivers with no regard for safety – such as what happened earlier this year in Texas when 24-year-old Jared James bolted from his group home and was killed after bursting into a neighbor's house (http://www.kvue.com/story/news/local/2015/01/05/police-respond-to-shooting-in-south-austin/21278223/).
We keep trying to make our kids visible, to remind policy makers of their acute needs – through letters, emails, testifying at government hearings, any way we can. And the inclusionists – some bureaucrats, some scholars, some self-advocates who are, as a group, vastly higher functioning than Jonah and his peers – keep responding . . . Pennhurst. Willowbrook (institutions whose deplorable conditions were exposed in the 1960s and 1970s, precipitating the mass emptying of the nation's large psychiatric hospitals).
It must be a pretty compelling argument, because why else would the American Civil Liberties Union (ACLU) sign a letter in support of New Jersey's proposed regulations prohibiting those with autism and/or I/DD from using their Medicaid dollars to live in any settings larger than four people? Again, this is the ACLU, arguing against the right of disabled individuals and their family members to choose the housing models that best meet their needs. The ACLU stating that people with autism and/or I/DD should not share the very basic right enjoyed by those of us without these disorders to live with whomever we want in settings of any size and location. The ACLU defending regulations that provoked so much opposition from the autism and I/DD communities that Governor Christie subsequently rejected them (as you've probably observed, I don't get the ACLU's bizarrely hypocritical position on this issue either).
Because Pennhurst is a straw argument. Nobody, needless to say, supports shackling feces-smeared patients in overcrowded, understaffed, rat-infested wards. Just because atrocities occurred decades ago, in an era of little oversight, far fewer educational and treatment options and massive stigma, doesn't mean that we can't build congregate settings today that are, as Sisti and his colleagues describe them, "safe, modern, and humane," while providing the intensive supports that just can't be duplicated in individual apartments in the community. These might include on-site vocational, occupational, physical and recreational therapists, as well as behaviorists, psychiatrists, nurses and adequate direct care staff to facilitate community and peer interaction while managing crises when they inevitably occur.
In an earlier response to "Bring Back the Asylum," doctoral candidate Jaime Anne Earnest pointed out that courts have ruled "the severely mentally ill [have] the right to live, and to be treated, in the community." I agree completely. Those with autism and/or I/DD who choose to live in the community should also receive whatever support they need to thrive. But what about those who won't thrive? They shouldn't be forced into integrated settings any more than others who prefer integrated models should be forced into congregate settings – a position obviously shared by the courts, which have repeatedly acknowledged that community settings, while preferred, aren't appropriate for everybody.
Jonah is sixteen. The aggressive and self-injurious rages that necessitated an almost year-long hospitalization when he was only nine years old have been medically stabilized, for now. But he will always need 24/7 supervision. Where that will occur, I'm not certain. But I do know that the more choices available to our family, the more likely it is that Jonah will live a full and satisfying life – which, I hope we can agree, is the goal for all those debilitated by severe psychiatric, developmental and intellectual disabilities.
Amy S.F. Lutz writes about issues affecting those with severe autism for Slate and Psychology Today, and is the author of the book Each Day I Like It Better: Autism, ECT, and the Treatment of Our Most Impaired Children. She is also the president of EASI Foundation: Ending Aggression and Self-Injury in the Developmentally Disabled.