The Anna Westin Act vs. the Recovery Model, and why eating disorder clinicians need to take off their blinders and catch up to strengths-based, peer-support approaches used with all other severe mental illnesses

The recovery model approach to treatment is a holistic, strengths-based -rather than deficit-based – approach which treats people with dignity, in their communities, and recognizes that people with severe mental disorders want and can return to being full, functioning members of society when provided access to resources such as supportive housing (for example, “sober living communities”), outpatient therapy, employment assistance, and consumer- or peer-run programs.

Rehabilitative care recognizes that recovery is an ongoing process, defined differently by everyone, and that many individuals can still thrive despite the presence of ongoing but non-disabling symptoms.

The need to move individuals with all forms of severe mental illness out of treatment facilities and into recovery models of care is exactly what the Bazelon Center litigates for.

“With every other [psychiatric] disability residential treatment doesn’t appear to be effective,” Burnim said, referring to the research to date. “Segregating people in facilities doesn’t work… I don’t know why the movement of de-institutionalization hasn’t happened in the eating disorder world. But with all other mental disabilities consumers and advocacy groups have come together to say individuals should be given the opportunity to stay and be treated in their own home… If you want to help people get better you need to treat them in their own environment by helping them learn to better navigate their own world.”

I asked Burnim about the “medical risk” or “self harm” argument treatment providers and parent groups often use to justify residential or inpatient treatment.

“The argument that somehow eating disorders are ‘different’ – a lot of people have tried to say that” for other mental disorders as well, Burnim replied. “But you have many disorders which also come with self-harm or life-threatening behaviors – such as schizophrenia or bipolar disorder. Our position is that that’s part of how the industry maintains their status quo – by saying ‘This disorder is different, so whatever trends are occurring in the disability world don’t apply to us.’”

I believe attempting to funnel more and more individuals with severe eating disorders into residential treatment — by marketing it as the gold standard treatment when it is anything but, and universalizing coverage of it — the industry is verging on violating our American with Disabilities Act (ADA) and Olmstead* rights by leading us into cycles of institutionalization which end in either death or permanent decline. My time cycling in and out of a system I was told would save me lasted more than a decade – as most of you know – and I’m much worse off today than before I entered that maze.

Bazelon’s Web site includes literature on how mental health facilities which look like caring treatment “homes” are often institutions in disguise:

“The physical location of a living setting in the community, its private ownership, or the absence of characteristics generally associated with a hospital do not guarantee that residents with mental disabilities are free of the discrimination and segregation prohibited by the ADA,” reads Bazelon’s statement on the community integration mandate. “Many individuals with mental disabilities are unnecessarily segregated in institutions such as nursing homes, board and care homes, and residential treatment centers that are physically located in the community… Facilities that may have the physical appearance of a home but, in fact, are quite isolated from mainstream community life.3

Individuals with severe and enduring eating disorders – and their families – are easy prey for for-profit treatment programs because we are weak in body, desperate, and aren’t told that what occurs behind the locked doors of a residential center may not be science-based, nor that we’ll most likely end up knocking on the doors of other centers later, because each prior program failed us. When you write your legislator, demand that if more money is going to be pumped into perpetuating and expanding the “residential treatment industrial complex,” that money also be devoted to researching and developing community-based, rehabilitative services for treating severe eating disorders on a par to which they already exist for other forms of severe mental illness today.

That is the type of parity I want to see. And researchers specializing in finding more effective treatment solutions for severe eating disorders agree.

In the July issue of Journal of Eating Disorders, in an editorial demanding a new treatment paradigm be applied to “severe and enduring anorexia” (SE-AN), Dr. Stephen Touyz and Phillipa Hay called on researchers and health care providers to start providing recovery or rehabilitative models for this population:

“Those living with a chronic illness, especially one as debilitating as SE-AN, are entitled to dream of a better tomorrow and to feel understood not only by the medical profession but by the world at large… Patients with SE-AN can no longer be ignored for they have suffered for far too long, having to contend with an abysmal quality of life devoid of any hope of an effective treatment on the horizon… The time has now arrived to take the bold step in reconceptualizing illness severity in anorexia nervosa especially since there is a growing recognition that the factors that may contribute towards its onset are not necessarily the same as the ones that may perpetuate it…. On measures such as quality of life, those with SE-AN have been found to be equal in impairment to those with severe depressive disorder as well as schizophrenia. Such factors provide a compelling argument as to why a rehabilitation model of care, not too dissimilar to the ones advocated for those with schizophrenia, needs to be considered for those with a persistent eating disorder, including highly specialized acute care when the need arises.4

*The Olmstead case was a 1995 Supreme Court ruling which affirmed that the ADA prohibits the segregation of individuals with physical and psychiatric disabilities. “Needlessly isolating such individuals, the Court wrote, is a form of discrimination based on disability—discrimination that perpetuates unwarranted assumptions about their capabilities and their worthiness to participate in community life. The Court found that institutional confinement deprives people of what is valued most in life: family relations, social contacts, work, educational advancement and cultural enrichment. In interpreting the ADA, the Court relied on the ‘integration mandate’—a regulation issued by the U.S. Department of Justice requiring public entities to ‘administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities.’[28 C.F.R.§ 35.130(d)]. The Court also relied on a regulation requiring public entities to make ‘reasonable modifications’ to avoid discrimination on the basis of disability,” summarized Bazelon5.

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