For the past twenty years, I have been involved with mental health services as a counsel to the governor of New York, as the head of the oversight agency, as the administrator of the protection and advocacy system for New York, and as a court monitor and expert witness in class action lawsuits in several states. For all of that time, the mental health community has been fragmented and as lacking in cohesion as the mental health system itself. Institutional providers disparage the work of community agencies that reject challenging clients; community agencies dismiss the role that institutions have played and continue to play; state agencies and local governments squabble over which of them is evading responsibility for the care of vulnerable citizens; private providers and governmental providers argue over the relative value of their services; families decry the unresponsiveness of service providers in an hour of need and urge easier access to services; primary consumers rail against the pervasive coercion of the mental health system and give compelling testimony of the harm they have suffered at its hands. And so on.
From my vantage point, there is a kernel of legitimacy to all of these claims, but the vehemence with which they are pressed emphasizes the disagreements and dissonance among the various constituency groups and gives scant voice to areas of agreement. Legislators and policy makers, who respond most effectively when they hear constituency groups speak with one voice, instead hear a Tower of Babel.
This point came to me powerfully two weeks ago while attending a conference in New York City on "The Carey Years" that reviewed the governorship of Hugh L. Carey from 1975-1982. A member of the audience at a panel discussion on human services noted that one of Governor Carey's most notable accomplishments was signing the Willowbrook Consent Decree, which ended litigation over the wretched conditions in an institution that once housed more than 5,000 people with mental retardation. In the ensuing years, the state transformed the service system for mental retardation, spending tens of millions of dollars to replace institutions with an array of community residences and day programs. Why, he asked, had the Governor not done the same for the mentally ill?
A panelist responded that early in his administration Governor Carey had appointed a widely representative 36-member task force to advise him on mental health issues. But instead of speaking with a single voice, he said (with some exaggeration, I suspect) the task force came back with 36 opinions, ensuring that nothing would be done.
(T)here is no dearth of profound challenges that could keep us all constructively occupied in improving a shameful history of treatment of persons with mental illness.
If there is a single overarching challenge for the future of the American mental health care system, it is to learn to build consensus where there are broad areas of agreement about what needs to be done and to rid ourselves of the bad habit of focusing upon and magnifying the areas where there is disagreement.
Despite the modest progress that has been made in recent years, there is much that is fundamentally wrong with mental health services in most parts of this country. A few of the most glaring include:
•Thousands of citizens are locked away in psychiatric institutions long after there is any demonstrable clinical need for hospitalization, even in the opinion of the hospital staff. They live in conditions of daily indignity that robs them of privacy and a sense of personal identity and segregates them from the rest of society, often with little constructive activity. Many spend weeks and months with less access to the outdoors for fresh air and exercise than is afforded to convicted criminals in prisons. Scientific advances in the treatment of persons with mental illness are painfully slow in trickling down to the institutions that confine them.
•Thousands more, who have been discharged from psychiatric institutions, live in conditions of unspeakable neglect in boarding homes, shelters, or in the streets of our communities.
•Despite the billions of dollars spent annually on mental health services, both consumers and families often find services unavailable in a time of need or unresponsive to their concerns.
•Patients with mental illness are unique among all patients in lacking the protection of informed consent to treatment, and they are the only group of citizens who can be volunteered by others for participation in experimental treatment that is of no direct benefit to them.
•While there is broad acceptance of the principle of patient participation in treatment planning and of the value of family involvement, practices are often widely at odds with this.
My point is not that any or all of the proceeding problems are the ones around which all the mental health constituencies should galvanize their advocacy efforts (although that would not be a bad idea). Rather, it is that there is no dearth of profound challenges that could keep us all constructively occupied in improving a shameful history of treatment of persons with mental illness. The key to effective advocacy is for all of us to learn to speak in harmony rather than in dissonant voices. This may require that we each truly listen to one another's points of view about potential solutions and be willing to forego the "solos" for a stronger chorus of effective advocacy. When we have done so, we will be able to accomplish dramatic changes. The recent passage in New York of a community reinvestment law that transfers a portion of the funds saved by closing institutions to localities for community services and that targets another portion for the care of the homeless mentally ill is an example of what cohesive advocacy efforts can achieve when the many voices speak as one.
E pluribus unum.
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