But First, Do No Harm

Twice in the last month, Wendy English has been in the news. Articles in both The Record and The Star-Ledger have detailed Ms. English’s struggle as she prepares to change developmental centers from Woodbridge to New Lisbon. Ms. English is a highly-functional person with both physical and psychological disabilities. In many ways, her story is an advocate’s nightmare.


For well over fifty years, advocates for the disabled have campaigned to close institutions. And, replace them with what? Prisons, that’s what.  It’s the law of unintentional consequences run amok. USA Today recently ran a four-part series about how persons with mental illness are overwhelming police departments around the country (see link at end of column). As institutions around the country have closed, community resources for those with mental illness have not matched the number of persons with mental illness released into society. Without proper funding of community-based alternatives, the needs of these people are often shifted to the criminal justice system.


Since the Olmstead decision of 1999, advocates for people with disabilities have continued to push for the elimination of institutions. Governments have eliminated the institutions without shifting the funding of the institutions to community-based services. Another example: in a recent New York Times article, it was stated that the inmates in New York City’s Riker’s Island prison most assaulted by guards and put into solitary confinement are those with mental illness.


Finally, there’s Wendy, who while not in prison, is being forced to make hard choices by New Jersey’s closures of its remaining developmental disability centers. Totowa closed this past June, and Woodbridge is scheduled to close by the end of the year, leaving people like Wendy with multiple needs to be forced to change living situations that have served them well for years.


Advocates have written that Wendy never knew of life outside of an institution, so therefore, how can she know the benefits of living in a group home or non-institutionalized setting? Wendy had a life at Woodbridge, and was comfortable there. She had many friends and also a job working at Woodbridge. All of the things that Wendy had going for her, friends, a job, a comfortable environment, are things that we, the advocates, would support, were she in a community-based setting.  Does being in an institution make Wendy’s decisions about her life any less valid? More importantly, are any of us, either as agencies or advocates, willing to take on the cost of providing care for Wendy without government support?  Until we are, we should step very lightly as to our criticisms of her views.


In no way does this mean that I am against the closing of institutions. I am all for it, provided that those who function well there are given suitable alternatives. Any advocate who argues against Wendy English risks being seen as unkind and uncaring by the non-disabled world. If they are seen that way it will make their advocacy for other issues less effective.


How should we approach this problem? First, we should realize that this is probably the last generation that will want institutionalized care in any form. As advocates, we have done a great job of diverting new cases from mental institutions. This then becomes a generational issue. As the older generation, who prefers – and yes, needs – institutionalized care ages out and dies, the younger generations of people with disabilities will either be cared for by their families  and/or, hopefully, diverted to community-based services.


Just because there is a law saying that states have to provide services in a community-based setting, doesn’t make it so. As advocates, our responsibilities to both current and future generations, are to continue fighting for full Olmstead funding, not the half-assed hodge-podge that state and federal governments have created since 1999.


By accomplishing that, we will truly begin to guarantee a complete life in their communities for people with both physical and psychiatric disabilities. If we do not achieve this goal, then those of us who need help the most will be helped the least. They are already imprisoned by their mental illness. Let’s not make it worse by consigning them to the societal dustbin of actual prison.





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