I have had the good fortune over most of the past two decades to participate in the vast effort made by the Mental Health Association movement to make life better for people with mental illness, especially those who are disabled and rejected by society.
There are two tremendously important symbols of the Mental Health Association. One is a bell modeled on the Liberty Bell. Historically, it was used as the logo of Mental Health Associations everywhere. But it is more than a logo. Years ago, the national MHA forged a real bell from “shackles and chains” that had been used to restrain people with mental illnesses in institutions.
This is what we have come from—a time when people with serious mental illnesses were housed in “asylums” and “hospitals” not worthy of their names, places where terrifying restraints, where harsh treatments that we now know to be little more than tortures, and where physical, verbal, and sexual abuse were day-to-day facts of life.
The bell symbolizes the rights of people with psychiatric disabilities—their right to be recognized as human beings, their right to be treated with dignity and respect, and their right to liberty. It also symbolizes hope—hope for a decent quality of life, hope for satisfying and meaningful lives, and hope to overcome the horrors of acute madness, which have plagued the human species from its very beginnings.
The second symbol of the Mental Health Association movement is its founder, Clifford Beers, a man who spent three terrible years in mental hospitals in the first decade of the 20th century, a man who suffered frequent abuse by the people who were supposed to care for him, a man who developed a grandiose dream while in the hospital to create a national and international movement to humanize the treatment of people with mental illness, and a man who realized his dream when he finally was able to leave the hospital and return to life in the community.
Beers is the best possible symbol of the potential of people with mental illness and of the hope for recovery. He is a symbol as well of the power of advocacy and of the obligation we have as human beings to reject abuse and neglect of those who are mentally ill, to reject warehousing them in institutions and denying them a life in the community, and to insist on their acceptance in the communities where they choose to live.
Symbols, of course, are not actualities. High moral feelings are not achievements. And so we have to ask, what has become of the vision that Beers spun out in the first four decades of the 20th Century?
The answer is that there has been remarkable achievement. Yes, there is much left to be done, but we can still take pride in what the field of mental health accomplished in the second half of the 20th century—after Beers had died.
Sadly, he died in a psychiatric hospital (fortunately a good one) in the early 1940s during a period when people with mental illness in state hospitals suffered some of the worst abuses in the history of the United States because of the Depression and World War II.
It brings to mind a poem by Robert Frost called “Death of The Hired Man” about a man who, having nowhere else to go at the end of his life, returns to a farm where he had once worked. He is described as a man who “has nothing to look backward to with pride and nothing to look forward to with hope.” And he was not welcomed.
Beers returned at the end of his life to a hospital that took him in with great respect for his remarkable achievements. Unlike the hired hand, Beers had much to look backward to with pride and much to look forward to with hope, not for himself but for the field he had helped to shape.
We too can look back with pride and forward with hope. Since the middle of the 20th century, the mental health system has been transformed, much in the image Beers envisioned, from an institution-based system to a community-based system. We should be proud of that fundamental transformation, and we should be careful not to diminish the magnitude of this achievement even as we confront a myriad of major challenges to improve life for children whose growing up is interrupted and distorted by serious emotional disturbances, for adults trying to build lives for themselves despite psychiatric disabilities, and for older adults who frequently face emotional and cognitive barriers to aging well. We should not lose our sense of pride in what we have achieved even as we pursue major structural change so as to become what is strangely called “patient-centered” and “recovery oriented.” (Imagine how mysterious those terms are to people outside our field.) We should not lose our pride even as we reshape our conception of what a mental HEALTH system should be¸ from a system that is just about mental illness to a system that also helps people to be mentally and physically healthy and to live well.
Think of what we have accomplished. We have made it possible for hundreds of thousands of people with mental illnesses who at one time would have been institutionalized to live where they prefer to live—in the community.
But wait. The critics ask: how many are homeless, how many are in prison, how many are in nursing homes or adult homes?
We need to answer. And mental health policy will have to be transformed again to end warehousing in shelters and the use of jails and prisons and nursing and adult homes as substitutes for asylums. More and more people must be enabled to live decent lives in communities of their choice.
But it is still true and important that many people with serious mental illnesses are living outside of institutions, have access to decent care, and are pursuing lives that they find satisfying and meaningful.
That, as you know, did not happen at the beginning of the transformation from institution-based to community-based care. Deinstitutionalization—the first phase of communitizing mental health—was done poorly. Excessive optimism about the healing powers of medication and of simply being out of institutions led to a failure to put services in place that people with psychiatric disabilities need.
During the most aggressive period of deinstitutionalization, from 1968 to 1973 when the population of New York’s state hospitals dropped from 80,000 to 40,000, people leaving did not become homeless. That happened later. But those who could not manage on their own and who did not return to their families lived in squalid and often dangerous single room occupancy hotels and in adult homes—many (but not all) as scandalous then as they were recurrently revealed to be over subsequent decades. Little treatment was available in the community for people discharged from state hospitals, and what was available was generally of very poor quality.
In 1978 the concept of community support was introduced. It was a simple idea. People with serious and persistent mental illness need support to lead safe, tolerable lives in the community. They need housing, and they need rehabilitation and case management as well as good outpatient treatment and access to brief inpatient care in their local communities.
This is still the fundamental vision of mental health policy in America, and it has driven tremendous positive changes over the past 32 years. In New York State alone there are about 30,000 units of housing where none existed before. There are hundreds of rehabilitation programs. There has also been vast expansion of outpatient services, not only clinics but also day programs of various kinds. Assertive community treatment and case management have become key elements of the system. Local inpatient capacity has also grown as the capacity of state hospitals has been reduced. The state hospitals that are left are far better places than they used to be because of major capital investments and a commitment to quality that began in the 1980s.
And, very importantly, people who use mental health services and their families now play important roles in the planning, design, and delivery of services.
During the early 1980s, children and adolescents with serious emotional disturbance began to get the attention they deserve. Child mental health leaders were appointed in governmental agencies. Plans were developed. A new vision emerged of comprehensive service networks providing access to needed clinical services, bringing together the diverse child-serving systems, and involving families as respected resources rather that as blamed causes of their children’s disorders.
Over the past 25 years there has been significant service expansion for kids, including not only outpatient clinics but also school-based services, home and community-based waivers, case management, therapeutic foster care, much improved residential treatment, and more.
While the public mental health system was growing, so was the private sector. Thanks to ongoing advocacy as well as changes in professional standards and expectations, health insurance expanded to cover inpatient and then outpatient mental health services. Employee assistance and similar programs also sprouted up in the workplace. The result was a vast increase in the number of people who get treatment.
About 20 years ago advocacy for health insurance coverage of mental health moved from mere coverage to equal coverage of mental and physical health services—parity. This culminated in the last few years with the passage of Timothy’s Law in NYS and federal parity legislation, which—to our great relief—was retained and improved in federal health care reform.
Over the past half-century, there has also been tremendous investment in mental health research. Even though it has not produced the breakthrough we keep seeming on the verge of, it has resulted in significant improvements in treatment and rehabilitation technology and determination to translate research into practice in both the private and the public sectors. As a result, services are better and more effective than ever in history.
So the system is unquestionably better, but as Richard Franks and Sherry Glied put it in the title of their very important book evaluating the first 50 years of community mental health, Better But Not Well. There are many needs still to be met, many changes still to be made, many fundamental concepts of mental health policy still to be challenged and reformulated. In the next issue of Mental Health News I will write about the hard work still to be done, but for now I will say again that we should look back with pride on the progress the field of mental health has made over the past half century even as we look forward with hope to improvements yet to come.
Michael Friedman recently retired as Director of the Center for Policy, Advocacy, and Education of The Mental Health Association of NYC. The statement above was adapted from his policy address at the first annual MHA Mental Health Policy Lecture. Mr. Friedman can be reached at firstname.lastname@example.org.