A Brief History of Mental Health Advocacy
In the first decade of the 20th century, Clifford Beers, the founder of the Mental Health Association movement, articulated the vision that nearly 50 years later became the core mental health policy of the United States. From his own dreadful experiences as a patient in several psychiatric hospitals came a commitment to devote his life to humanizing the conditions in mental hospitals, to preventing the need for hospitalization, and to preventing mental illness and its disabling consequences.
He believed that many people with mental illnesses were treated badly because of stigma and ignorance and sought to build national and international organizations through which myths could be dispelled and progressive public policies championed. With the shift from institution-based to community-based mental health policy in the mid-1950's, Beers' vision became the driving force of public mental health policy in the United States.
While deinstitutionalization, the first wave of community mental health, was of great benefit to people who were able to have better lives outside the hospital, it was a disaster for a great many people who were essentially abandoned in the community without the services and supports that they needed. As a result, they lived in terrible conditions and without adequate treatment or became the responsibility of their families, who simply refused to let family members live in danger and squalor.
In the late 1970's, about 10 years after the most aggressive period of deinstitutionalization began, a community support policy was instituted in The United States. This policy shift resulted in a significant expansion of services in the community for adults with serious and persistent mental illnesses including housing, outpatient services, acute inpatient services in general hospitals, crisis services, rehabilitation, case management, and peer support. Many people who would have been living either in State hospitals or in terrible conditions 25 years ago are now leading lives in the community which are far more satisfying than the lives they would have had without the Community Support Program.
Inadequacies of the Current Mental Health System
Despite the improvements that have emerged because of the Community Support Program, there are a number of notable inadequacies with the current mental health system.
Adults with Serious Mental Illnesses
- A substantial number of people with recurrent, serious mental illnesses reject, or cannot use, traditional mental health services.
- Some people who avoid treatment manage quite well without it, but many end up in crisis and then experience long hospitalizations. An increasing number of them are now in jails and prisons, generally for minor offenses. A very few commit acts of violence which make the headlines that dominate public debate about mental health policy. Many of these episodes of inappropriate treatment and human tragedy could be averted if relevant and responsive community services were available.
- A substantial number of people with serious mental illnesses have been "transinstitionalized" to large congregate care facilities for poor people, who are believed to be unable to live independently in the community. (In New York State they are called "Adult Homes.")
- These facilities generally provide poor care, sometimes scandalously poor. In addition they become dead-ends for people who may be able to live more independently in the community if appropriate housing, services, and supports were available.
- There is not enough appropriate housing for people with serious mental illnesses, who often need help finding and paying for decent places to live and who often also need a variety of supports to be able to live in the community.
- Lack of housing results in homelessness, in living in squalor and danger, in excessive reliance on inappropriate institutions of various kinds and in family burden.
- Despite decades of talk about providing integrated treatment services for people who are mentally ill and abuse substances and other co-occurring disorders, such services are not widely available.
- Mental health services for adults with serious mental illnesses and their families are often not based on practice models for which there is research support because many mental health professionals are inadequately trained in state-of-the-art models and because regulatory and financing structures are frequently based on outmoded treatment models.
- Even when they get decent care and treatment, most people with serious psychiatric disabilities are not employed despite their desire to work and despite the existence of a rehabilitative technology that could help them to get and keep jobs. Unfortunately rehabilitative opportunities are not widely enough available.
- Services provided by people with mental illnesses for their peers, while growing, remain limited and tenuous despite successful experiences throughout the country.
- There has never been adequate support for families of adults with serious mental illnesses even though they provide a large amount of care for their family members.
- As the current generation of parents providing care for their family members with psychiatric disabilities becomes too old to provide care and eventually dies, a resource on which our society depends informally will be lost.
- Many adults with mental illnesses, whether mild or severe, cannot get access to mental health services in the private sector because of inadequate insurance coverage and because mental health professionals, in both the public and the private sector, are simply not available in some parts of the country.
Children and Adolescents with Serious Emotional Disturbances
Children and adolescents with serious emotional disturbances frequently do not get mental health services or do not get the mental health services that would best meet there needs.
- There are not enough mental health services for children and adolescents in the public mental health system.
- Many children and adolescents with emotional disturbances cannot get access to mental health services in the private sector because of inadequate insurance coverage and because there is a shortage of mental health professionals for children and adolescents.
- Mental health services for children and adolescents are often not based on practice models for which there is research support because many mental health professionals are inadequately trained in state-of-the-art models and because regulatory and financing structures are frequently based on outmoded treatment models.
- Outpatient services generally are not flexible enough with regard to time, place and nature of services provided. In addition they generally are not responsive enough to crises in the lives of emotionally disturbed children and their families.
- Inpatient services and residential treatment, which are critical elements of a comprehensive mental health system for children and adolescents, are over-utilized because of the absence of a comprehensive system of community-based services which provides a full continuum of services.
- Involvement of families in the treatment of their children and support for these families or caretakers is not nearly as widespread as it should be.
- Children with serious emotional disturbances often are served in several child-serving systems. Little progress has been made in the effort to integrate child-serving systems.
Quality of Care and Treatment
Despite remarkable improvements in the effectiveness of treatment over the past twenty years and a dramatic shift in attitude among the best practitioners towards recipients of services and their families, serious problems with the quality of care remain.
- A human resources crisis has emerged due to low salaries for mental health workers. Recruitment and retention of well-qualified staff has become exceedingly difficult resulting in serious problems maintaining minimally adequate staffing levels and in providing continuity of care.
- Many providers are not adequately trained in new treatment methods and/or in the need for respect and humanity regarding people with serious mental illnesses and their families.
- Research has not yet provided the dramatic breakthroughs in treatment which have been the central hope for mental health, even though there have been important strides made.
- There have been continuing revelations about inappropriate use of restraint and seclusion, raising new concerns about patient abuse.
Readiness for Demographic Shifts
The mental health system generally has not been preparing for dramatic demographic shifts which will take place within the next two decades-especially the growth of older adults (the "baby boom generation") and the growth of cultural minorities.
- As the number of older adults grows, so will the number of older adults with significant mental health problems. They will be more likely to seek out and use mental health services than the current generation of older adults. Nevertheless, meeting the need for more mental health services for this population is not generally included in plans for new mental health services.
- Minority and immigrant populations are also growing rapidly, and minorities may become the majority of the American population within the next quarter century. Lack of widespread cultural competence will become an ever-greater problem as minority populations grow.