Note: This is such an important article in Psychology Today, I had to share it with you. HOUSING. CHOICE. CONTROL. For those of us with children for whom an independent life is not an option, why is it that a small group of advocates has been able to dictate what we can and can not have for our loved ones? No one wants the sterile, violent and horrible institutions of the past to return. NO ONE. That said, for many of us, our loved ones simply do not fit into the models of community based, or even small group home living. Autism often includes severe behavior and unique needs. We have high rise communities dedicated to the elderly with Alzheimer's and Dementia. These facilities are built with the safety and needs of the population in mind. We NEED this for autism. The pendulum swings. And often, a minority can speak for everyone without the needs of everyone truly being in mind.
The other day, when picking up my daughters for his every 3 week visit, my girls' Dad asked me what I was planning for their housing going forward. (I know... it always did and always will fall to me.) I subsidize my daughters by having them live with me. We share custody, but it means nothing really. He pays not a dime toward their day to day living expenses. They receive their SSI - but that wouldn't pay for a hovel here in Connecticut, even when pooled. If they received any formal “child support”, it would deduct their SSI. A divorced man or woman could pay alimony to the custodial parent, to support the adult children, but let’s face it, few do that willingly without a court demand. Their Dad seemed to think there was some magic program that would just put them in a home with staffing and pay for it. And to keep THREE sisters together? We have to create from scratch. And that takes a lot of... scratch! LOL. There IS no housing that falls from the sky. So what are we to do?
Read the article below by Amy Lutz, and feel free to comment both HERE and at Psych Today.
By Amy Lutz
Last week, in a New York Times article about Elizabeth Warren’s proposed disability policy, an Ohio mother of a mainstreamed fifth-grader with Down syndrome implied that her son’s school should get rid of its specialized classrooms for children with disabilities: “Just because that segregated room exists, it’s a constant threat for him,” she said.
I’ll have more to say about mainstreaming in a later post, but for now, I just want to focus on this logic, which I’ve encountered time and again during my 15-plus years of advocacy: I don’t want X, so no one should have X.
I initially ran into this while researching my first book, which was about the electroconvulsive therapy (ECT) that finally stopped my son Jonah’s violent rages. These posed such a danger to himself and others that he was hospitalized for almost a year when he was only 9 years old.
There are over 15,000 citations on PubMed documenting the safety and efficacy of ECT for certain psychiatric and motor disorders; an estimated 100,000 Americans get ECT every year; and the treatment has been transformative for Jonah and for dozens of other young people with intellectual and developmental disorders and aggressive and/or self-injurious behaviors. Yet there still remains a very small, vocal minority lobbying for ECT to be banned—either because they suffered side effects from it, or perhaps it didn’t work for them or for a loved one, or even because, although they’ve never had it, it just sounds scary.
ECT is a significant intervention used on desperately ill patients who have not responded to less-invasive therapies. It can have side effects (the most common are headache and nausea, but short-term memory loss around the acute course of treatment is not uncommon), and it doesn’t work for everybody (although studies show it works for most people—about 80 percent of catatonic or depressed patients). In this way, it is similar to other major medical procedures, like chemotherapy or bypass surgery. But can you imagine anyone making the argument that either of these procedures should be banned because they caused side effects or failed to save the life of a family member?
Once Jonah stabilized, and my advocacy shifted to services for the severely autistic, I realized this logic defined many of the debates I found myself in. Mildly affected self-advocates, who would never need the intensive supports provided by larger residential settings, sheltered workshops, and disability-specific day programs, fought to close them. It wasn’t enough to offer more options, like supported employment and individual apartments. Even as these “integrated” models became the default mode of service delivery, advocates pressured (and keep pressuring) states to close alternative settings they deem “isolating” and “segregating”—despite vociferous protests from intellectually and developmentally disabled clients and their families.
In this country, there needs to be virtually incontrovertible evidence that something is harmful before it is banned—and often, that isn’t even enough, as in the case of cigarettes, for example. ECT, in contrast, has a strong evidence base reflecting decades of research from hospitals around the world.
As for service models, although self-advocates claim that research favors smaller, inclusive settings, the few studies that have been done are so poorly designed—typically not controlling for challenging behavior, for example—that David Mandell, Director of the Center for Mental Health Policy and Services Research at the University of Pennsylvania, summarized (in an editorial I’ve quoted so many times that many of you can probably recite this with me), “Our decision-making regarding which types of placements to pay for and prioritize is based on values rather than data.”
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Historically, disability advocates (many of whom were parents, going back to the mid-20th-century founding of groups focused on cerebral palsy, muscular dystrophy, and intellectual disability) have fought for expanded options, because the one-size-fits-all model of institutionalization was neither preferred nor appropriate for many disabled individuals. In fact, the Supreme Court Olmstead decision—mysteriously yet consistently cited as an “inclusion mandate” by many advocates—is actually an expansion mandate, affirming the right to live in community-based settings, but explicitly preserving institutional levels of care.
Justice Anthony Kennedy warned, in a concurring opinion I also keep finding myself referencing, that “it would be unreasonable, it would be a tragic event, then, were the Americans with Disabilities Act of 1990 to be interpreted so that States had some incentive, for fear of litigation, to drive those in need of medical care and treatment out of appropriate care and into settings with too little assistance and supervision.”
Today, the dominant voices in the Disability Rights fight instead to constrict options, based on nothing more compelling than ideological incompatibility. What too often goes unarticulated is that this insistence on a new, one-size-fits-all model of inclusion or bust is just as paternalistic as the push for institutionalization it replaced. READ THE FULL ARTICLE AT PSYCHOLOGY TODAY HERE.