The Client Voice
Dave Hosseini, Executive Director, Consumer Self Help, Sacramento, CA
invited presentation prepared for Mental Health and Public Policy Symposium: Coping with Mental Illness and crafting Public Policy, January 12, 2002, U C Berkeley
I am very happy to be here today at this important symposium and I would like to thank all those who have made my remarks to you today possible. I must also point out though that until this week there not only was there no representation from the viewpoint of the largest group of consumers, the California Network of Mental Heath Clients, in the state, there was also no representation from the largest group of non profit mental health social rehabilitation providers in the state , the California Association of Social Rehabilitation Agencies. Both CalNet, the oldest consumer run advocacy organization in the country, founded in 1983, and CASRA. a consortium of 38 agencies, are at the forefront of the day to day trials, tribulations and treatment strategies that are working everyday across the state. Both organizations have been included in all of the great public policy advances that we have made in California mental health in the last twenty five years and it is imperative that policy makers listen to the people who best know the subject matter at hand. It is my opinion that the group who should have the most impact on policy makers are those who have used the services we speak about themselves, those who have come together an organized fashion to influence, improve and make more humane the services that the mental health community provides. While I am the Chair of the Public Policy division of the California Association of Social Rehabilitation Agencies, I am most proud to be a member of the California Network of Mental Health Clients.
Today in coming here you saw signs that say `Nothing About Us Without Us and shirts like this one which say `those who cannot remember the past are condemned to repeat it. I ask that any of you who have anything to do with policy or setting up conferences like this one, remember in the future to include from the start those groups of individuals who have the most to gain or loose from the policies you devise and the information you provide to the public.
So I come to you today representing both the consumer community and the social rehabilitation practitioners who live and work in the mental health arena everyday around the state and I must report to you that for the last three years we have been a community under siege. We have been a community under siege by ideas in various bills, so far not successful,, in the legislature which have sought to turn back the clock in mental health care and which have ignored the best practices and principles that we have come to know over the last thirty years in mental health care delivery.
Opposition to these ideas has unified a diverse group of persons with interest in the mental health community. I have already mentioned the California Network of Mental health Clients and the California Association of Social Rehabilitation Agencies but you can add to that list the California Mental Health Directors Association, the California Council of Local Mental Health Agencies , the California Psychological Association, the National Association of Social Workers ,and the California Mental Health Planning Council, whose members are appointed by the governor to advise on mental health policy, also you can add Protection and Advocacy and the California Association of Mental Health Patient Rights Advocates - also please know for a fact that neither the recent Rand Report nor the recent Little Hoover Commission Report in any way recommended, suggested or encouraged implantation of these ideas - all of us have united in opposition to the ideas currently contained in AB1421. This has been a costly battle for the mental health community - funding opportunities in good economic times were lost, energy was expended that could have been put to use building upon what we know works in mental health care - the ideas in 1421 are divisive, ill advised, poorly thought out, harmful, unproven, disrespectful , dangerous to any type of therapeutic relationship, and frightening to those who do remember the past and who do not want it to be repeated - to those who can influence public policy in this state I know I speak on behalf of many others, when I say help us end this siege, help us put these bad ideas to rest, help us move forward and replicate the programs and ideas that we know do work ... help us, please help us, to end this siege this year.
We have work to do. First, we must do all we can to fight against what some call stigma but what is really plain and simple discrimination. Like all discrimination, discrimination against mental health clients is a product of history and a child of the unholy marriage of ignorance and fear. This ignorance and fear is a longstanding historical blemish which predates the founding of our country, but which has resulted in centuries of needless suffering ,and the shattering of lives not by an illness, but by treatments so rooted in a historical and cultural bias that the so called treatments are more harmful than the illness they seek to relieve .
Insulin coma therapy, ice baths, massive electro shock therapy, isolation, institutionalization, criminalization, the need that some in society have had to put away, to control, to constrain, to coerce, to seclude, to blindly traumatize, those with mental illness are a direct result of the historical bias which even today works against the establishment of courses of treatments which are humane and respectful. The ideas in AB 1421 are a direct outgrowth of this unreasonable learned fear and ignorance which at times clouds the judgement of anyone, including myself, who works in this field . The fact that supporters of the bill attempted to exploit the proven myth that mentally ill persons are dangerous to promote the bill is reprehensible and tragic.
The Surgeon General's Report of 1999 states that stigma, again I prefer to call it what it is which is discrimination, is "the most formidable obstacle to future progress in the arena of mental illness and health ... it is manifested by distrust, stereotyping, fear, embarrassment, anger and or avoidance. Stigma or discrimination," says the report, "leads others to avoid living, socializing or working with, renting to, or employing people with mental disorders, . .. it reduces patients' access to resources and opportunities and leads to low self esteem, isolation and hopelessness. It deters the public from seeking, and wanting to pay for care. In its most overt and egregious form stigma results in discrimination and abuse. More tragically," says the report, "it deprives people of their dignity and interferes with their full participation in society."
Any legislation which attempts to perpetuate stigma in order to gain passage is for that fact alone not worthy of consideration.
If what the Surgeon General's Report says is true, and I believe it is, it is incumbent on policy makers to design policies which provide antidotes to processes which deprive people of their dignity and self worth. There are such programs in California today - and they can be found throughout the state - they include voluntary daytime drop-in centers, supported living programs, voluntary crisis residential programs and innovative outreach programs such as those created by AB 34 - and all of those concepts are enhanced when they utilize the expertise and unique experience of mental health consumers themselves as employees. The AB 34 programs which have had a tremendous impact are not the first time that California policy makers tried to reach out to the homeless mentally ill - in the late 80's the Bronzan bill created similar programs around the state and I was coordinator of one in a small county near Sacramento. My job was to walk the riverbanks and alleys to meet people and to talk with them and to offer them housing on the spot which we had adjacent to a small daytime drop in center. Most of the people we met then could probably have been 5150'd as gravely disabled - current law does wisely allow a wide degree of latitude in the area of grave disability; had we gone for involuntary commitment, done that, most of those people would have run after their release. Instead, we met people with careful, thoughtful and deliberate resolve offering practical items like food and clothing to those who were too suspicions to take our offer of imitate shelter. In one case outreach occurred with one individual for over two years before she was willing to avail herself of the day center or other treatment - today roughly 15 years later that person and several others are still a part of the day center community, living in their own housing and enjoying a degree of recovery that few at the time would have thought possible ... my point here is that in the Bronzan programs, as in the AB 34 programs, careful, deliberate, and respectful outreach does provide a vehicle for persons to aim themselves toward a recovery community. Unfortunately the Bronzan programs were lost to the budgetary chaos of the early 90's but the benefit of those programs is still being felt today and I believe that it will take several years before the full impact of the AB 34 programs becomes known. The downward spiral of hopelessness and despair that leads to homelessness does not occur in a year or two and the remedy also cannot be expected to fully take effect in a few short years.
Does the outreach of AB 34 reach everyone? No it does not. Does any type of treatment succeed with every person? Of course not. In every human endeavor though there are standards and practices that have been learned about that endeavor and in the endeavor of serving those with mental illness we have learned that to be successful programs must offer choice and an opportunity to demonstrate recovery. Schemes like 1421 take away that opportunity, create a separate class of the permanently ill and emphasize not personal respect, but inadequacy and rely on giving credence to the misconceptions that are inherent in historical stigma and discrimination; in other words treatment must emphasize respect, dignity and self worth - any treatment or course of action which fails in this regard will cause more harm than any good. We must always remember the axiom first do no harm.
While I have talked in general about the treatment strategies offered in good social rehabilitation programs time does not allow me to tell you many of the specifics of the programs so I have thought of how I can best summarize what happens and what I have come up with may appear at first to be simplistic and nonscientific but it is in actuality complex and powerful - I believe that what happens in the best of programs can best be described as a kind of love -it is an affirmative demonstration of acceptance, caring, concern, encouragement and hope and most of all listening and hearing the needs, hopes, aspirations and, importantly, the fears of the persons using the programs.
The question comes up then how do you craft love in public policy -some may say it's too idealistic, too pie in the sky, not substantial but isnt idealism and hope and yes a desire to give love, the reason why everyone is in this room, the reason why most if not all of you share an interest in this topic? Remember that idealism in yourself. Remember the ability to hope. I believe that if policies are crafted which look at the successful models we now have, if policies are crafted which emphasize listening and hearing what people who have and are using services have to say, that we will go a long way toward improving mental health care in California. Finally I know that together, we can make a difference but in order to move forward together, the contentious ideas put forth in AB 1421 must be put to rest - someday I know they will be because they are the antithesis not only of what we know about mental health care, but also of the direction that the human condition is moving toward ... but let's not wait, let's do it now - those ideas have had their day and they have been examined, debated, and thoroughly rejected by so many of the true experts in this field. I ask you to please put those bad ideas to rest, let us end this sad chapter in the history of mental health in California and let us move forward together toward a new day of understanding, hope , and empowerment and true recovery.