Advocacy: The Push and Pull of Psychiatrists

Abstract

In the area of mental illness, advocacy has been neither a unitary concept nor a simple activity. The methods by which individuals and groups advocate in general are many and have been largely consistent through American history (after accounting for changes in technology). Methods of advocacy by those treating, suffering from, or caring about mental illness show a distinct evolution:

Appendix: Historical appendix

Advocacy timeline
1842	Elizabeth T. Stone publishes, A Sketch of the Life of Elizabeth T. Stone describing the deprivation of her liberty when hospitalized at McLean Asylum
1844	Thirteen superintendents (from the then existing 24 public and private mental hospitals) meet in Philadelphia and form The Association of Medical Superintendents of American Institutions for the Insane. In 1921, the association changed its name to The American Psychiatric Association (APA)
1849	Dorothea Dix visits the East Cambridge, Massachusetts jail and finds insane prisoners confined under inhumane conditions
1851–1860	Patients of Utica State Lunatic Asylum publish a periodical, OPAL
1866	Elizabeth Packard publishes her first book Martial Power Exemplified; 3 years earlier, she founded the Anti-Insane Asylum Society (Illinois)
1880	Formation of the National Association for the Protection of the Insane. The reasons for this Association included: increase in the types of diseases of the nervous system; increase in the incidence of insanity; “the peculiar helplessness of the insane”; help bring about central government supervision in all states; raising the standard of treatment in and out of asylums; and obtain and diffuse knowledge about insanity
1892	Charlotte Perkins Gilman publishes The Yellow Wallpaper, a fictionalized account of her treatment by S. Weir Mitchell’s rest cure
1908	Clifford Beers publishes his autobiography, A Mind That Found Itself. In 1919, with funding from the Commonwealth Fund and the Rockefeller Foundation, Beers forms the International Committee for Mental Hygiene (ICMH), the forerunner of the World Federation for Mental Health (WFMH) (1948)
1909	Beers founds the National Committee for Mental Hygiene, renamed Mental Health Association in 1976, National Mental Health Association in 1980, and Mental Health America in 2006
1930	May 5–10. First International Congress on Mental Hygiene (Washington, DC)
1935	June 10 is considered the founding date of Alcoholics Anonymous (AA)
1937	Recovery, Inc. is founded by Neuropsychiatrist, Abraham Low (Chicago)
Mid 1940s	Patients at Rockland State Hospital (NY) form We Are Not Alone which morphs into Fountain House
1946	Mary Jane Ward publishes The Snake Pit
1948	Albert Deutsch publishes The Shame of the States (Mental illness and social policy: the American experience) describing conditions in state mental hospitals
1949	Passage of the National Mental Health Act (PL 79-87) leads to the establishment of the National Institute of Mental Health (NIMH) as one component of the National Institute of Health
1951	NIMH publishes The Draft Act Governing Hospitalization of the Mentally Ill
1952	The APA publishes its first Diagnostic and Statistical Manual of Mental Diseases (DSM I)
1955	Formation of the Joint Commission on Mental Illness and Health
1956	Inception of the Social Security Disability Insurance (SSDI) program Passage of the Health Amendments Act of 1956 (PL 84-911) paves the way for the passage of comprehensive community mental health center legislation
1960	Thomas Szasz publishes “The Myth of Mental Illness” in the American Psychologist. A year later he publishes a book with the same title
1961	Erving Goffman publishes Asylums: Essays on the Social Situation of Mental Patients and Other Inmates
	A US Senate investigates and publishes its findings on Constitutional Rights of the Mentally Ill
1962	Ken Kesey publishes One Flew Over the Cuckoo’s Nest
1963	Mental Retardation Facilities and Community Mental Health Centers Construction Act of 1963 (PL 88-164). Bill contains funding for constructing community mental health center (CMHCs), but no funds for staffing them
1964	Dixon v. Weinberger (District Court of the District of Columbia) finds patients at St. Elizabeth’s Hospital have a statutory right to treatment and that those involuntarily committed must be placed in the least restrictive setting consistent with suitable treatment
1965	Medicare legislation is passed. It includes limited coverage for patients receiving active treatment in state hospitals in addition to those in general hospitals
1966	The Social Security Amendments of 1965 (PL 89-97) adds Title XIX, Medicaid, to the Social Security Act
	Lake v. Cameron. An individual cannot be committed until hospital officials determined there is no less restrictive facility available to care for that individual
	Rouse v. Cameron. Criminal defendant who is acquitted by reason of insanity and involuntarily committed to a psychiatric hospital has a legally enforceable right to adequate and suitable treatment
1970	Insane Liberation Front is formed by Dorothy Weiner, Tom Wittick, and others (OR)
	April. The first issue of The Radical Therapist is published
	Wyatt v. Stickney. Three fundamental conditions are necessary for adequate and effective treatment in public psychiatric hospitals: a humane psychological and physical environment, enough qualified staff to administer adequate treatment and individualized treatment plans
1971	Mental Patient Liberation Project (New York) is founded with one of its creators being well known advocate, Howie the Harp (Howard Geld). The Mental Patients Liberation Front is founded in Boston
	Mental Patients’ Association is founded in Vancouver, Canada. Almost immediately MPA begins operating a drop-in center and community residence. The USA lagged beyond the Canadian consumer-run services model by 5–10 years
	Soteria Research Project, founded by psychiatrist Loren Mosher opens its first house. Soteria is an early model of client-centered, recovery-based treatment with minimal use of antipsychotic medications
1972	A group of former mental patients circulate a newsletter, Madness Network News
	Bruce Ennis, a staff attorney with the ACLU (NY) publishes, Prisoners of Psychiatry exposing extralegal uses of psychiatry
	Founding of the Mental Health Law Project, subsequently known as of 1993 as the Judge David L. Bazelon Center for Mental Health Law, aka Bazelon Center
	Lessard v. Schmidt. Persons facing involuntary civil commitment are guaranteed the full array of procedural safeguards formerly guaranteed only to individuals charged with a crime
	A US district court judge in the District of Columbia orders an outpatient commitment
1973	An APA Committee passes a resolution that homosexuality per se should not be considered a psychiatric disorder
	First conference on Human Rights and Psychiatric Oppression
	The North American Conference for Human Rights and Against Psychiatric Oppression holds its first Annual Meeting
	Souder v. Brennan. Patient-workers are entitled to minimum wages and overtime compensation, thus ending most state hospital work programs
1974	The book The Madness Network News Reader is published by former mental patients and anti-psychiatry activists
1975	Donaldson v. O’Connor. A person who is involuntarily civilly committed to a psychiatric hospital has a constitutional right “to such treatment as will help him be cured or to improve his mental condition”
	Roger v. Okin. The first class-action suit on the right to refuse treatment
1977	Mental Patients’ Rights Association founded by Sally Zinman (Florida)
	NIMH initiates the Community Support Programs (CSP) to address problems created by poorly executed removal of long-term state hospital patients from their institutions. NIMH awards contracts to 16 states under CSP
	President Carter signs an executive order creating the President’s Commission on Mental Health
	The General Accounting Office publishes the first governmental study of the problems of deinstitutionalization, called Returning the Mentally Disabled to the Community: Government Needs to Do More
1978	Judy Chamberlin publishes On Our Own: Patient Controlled Alternatives to the Mental Health System
	President Carter’s Commission on Mental Health publishes Report to the President
	Leonard Roy Frank edits and publishes The History of Shock Treatment
	First CSP Learning Conference
1979	September. Almost 300 people attended a conference on advocacy for persons with chronic mental illness sponsored by the Dane County Alliance for the Mentally Ill and the University of Wisconsin-Extension in Madison, WI. This conference spurns the birth of the National Alliance on Mental Illness (NAMI)
	Community Support System (CSS) is formed growing out of a series of meetings at NIMH. Components of a CSS were identified as treatment, rehabilitation, case management, basic support, enrichment, crisis intervention, self-help, and rights protection
	Addington v. Texas. The minimum standard of proof to be met in civil commitment hearings is “clear and convincing evidence”
1980	“Phoenix Rising: The Voice of the Psychiatrized” began publication by former psychiatric inpatients (Canada)
	Suzuki v. Yuen. Involuntary civil commitment solely on the grounds of danger to property is unconstitutional
	The Civil Rights of Institutionalized Persons Act allows the federal government to initiate actions against states whose public institutions-such as hospitals, prisons, nursing homes and jails-deny residents their constitutional rights
	The Social Security Amendments of 1980 (PL 96-265) mandate review of all Social Security Disability Insurance (SSDI) beneficiaries, except those determined to be permanently disabled, once every 3 years
	The Mental Health Systems Act, the major accomplishment in mental health of the Carter administration, creates a comprehensive federal-state effort to care for persons with mental illness
	Surgeon General Julius B. Richmond, M.D., releases Toward a National Plan for the Chronically Mentally Ill
1981	Pennhurst State School and Hospital v. Halderman. Court denies that a federal statute had established a right to treatment for persons with developmental disabilities
	US Supreme Court rules inpatients of public psychiatric institutions are not eligible for Supplemental Security Income (SSI) payments granted to persons with mental illness
	The Omnibus Budget Reconciliation Act (OBRA) of 1981 eviscerates the Mental Health Systems Act. The Act lumps together all remaining categorical mental health programs into a huge block grant
1982	Founding of the Carter Center
	Mills v. Rogers. US Supreme Court does not decide on a constitutional right to treatment
	Youngberg v. Romeo. A person in an institution has a constitutionally guaranteed “right to personal security,” “a right to freedom from bodily restraint,” and the right to receive “such training as an appropriate professional would consider reasonable to ensure his safety and to facilitate his ability to function free from bodily restraints.” The effect is to narrowly define any constitutional “right to treatment”
	May 14–18. At the tenth annual International Conference on Human Rights and Psychiatric Oppression (Toronto, Canada) participants promulgated a set of 30 principles
	November 2. Berkeley, CA voters pass a referendum banning electroconvulsive therapy within the city
1983	May. The California Department of Mental Health, through its Community Support System Project, funds the development of the Consumer Steering Committee
	Academic Consortium is founded to advocate for expanded federal research dollars for mental illness
1984	The Disability Benefit Reform Act of 1984 requires the Social Security Administration to develop new health criteria for disability determination
1985	NAMI forms a subgroup called NAMI Client Council, renamed NAMI Consumer Council
	April. A consent decree is signed in a Maryland case, Coe v. Hughes that establishes that indigent patients in the 12 public inpatient psychiatric facilities have a right to access to the judicial system
	June. The First National Mental Health Consumers’ Conference is held in Baltimore, MD
	Formation of the National Depressive and Manic Depressive Association (NDMDA), subsequently the Depressive and Bipolar Support Alliance (DBSA), a patient-directed national organization focused on advocacy, outreach, and education
	American Association of Community Psychiatrists (AACP) is founded. The mission of AACP is to encourage, equip, and empower community and public psychiatrists to develop and implement policies and high-quality practices that promote individuals, family, and community resilience and recovery
	US Senate Subcommittee on the Handicapped issues a report of its investigation of conditions in psychiatric institutions, documenting lack of treatment, abuse, neglect, exploitation, deplorable living conditions throughout the USA. The Subcommittee chair proclaims, “Protection for these frailest of our society exists largely on paper”
1986	National Mental Health Consumers’ Self-Help Clearing House is founded by Joseph Rogers
	Public Law 99-319 creates a protection and advocacy system for persons with mental illness
	The State Comprehensive Mental Health Services Plan Act (PL99-660) calls on each state to prepare a detailed plan for the care of persons with severe mental illnesses. The plan’s development was to include participation by consumers, families, and advocates
1987	Board of Nassau County v. Arline. “Society’s accumulated myths and fears about disease are as handicapping as the physical limitations”
1988	Formation of Support Coalition International, which subsequently became Mind Freedom
	Shrink-Resistant: The Struggle Against Psychiatry in Canada, edited by Don Weitz and Bonnie Burstow, is published
1989	November 23–26. Canada’s first national conference for survivors of psychiatric “services” is attended by about 200 psychiatric survivors
1990	Spring/Summer. The Journal of Mind and Behavior publishes an issue, “Challenging the therapeutic state; critical perspectives on psychiatry and the mental health system” with contributor including Phyllis Chesler, Andrew Scull, Peter Breggin, Leonard Frank, Judi Chamberlin, and Thomas Szasz
	Medicaid expands to include a case management option and redefines rehabilitation to include psychiatric rehabilitation services
	The Americans with Disabilities Act (ADA) is enacted to eliminate discrimination against disabled persons. Title II says, “No qualified individual with a disability, shall, by reason of such disability, be excluded from participation in or be denied the benefits of the services, programs, or activities of a public entity, or be subjected to discrimination by any such entity”
1991	Formation of the World Federation of Psychiatric Users (WFPU), later to become the World Network of Users and Survivors of Psychiatry (WNUSP) (International), now a consultant organization to the United Nations
	United Nations adopts Principles for the Protection of Persons with Mental Illness and the Improvement of Mental Health Care
	The Inspector General of the General Accounting Office concludes that NIMH needs to address the findings of “blatant” noncompliance among a fourth of the CMHCs reviewed in the scope and volume of services provided to those unable to pay for them
	The Patient Self-Determination Act, part of the Omnibus Budget and Reconciliation Act of 1990, requires healthcare facilities that receive Medicare and Medicaid funding to provide information to adult patients about their right to make their own healthcare decisions, including the right to accept or refuse treatment and to execute advance directives about medical care
1992	Center for Mental Health Services (CMHS) is formed within the Substance Abuse and Mental Health Services Administration (SAMHSA)
	National Empowerment Center is formed by cofounders Daniel B. Fisher, M.D., Ph.D. and Patricia E. Deegan, Ph.D., both of whom were diagnosed with schizophrenia
	A group of consumers, who are also researchers, initiate the Consumer/Survivor Research and Policy Workgroup. This group works to redefine the national mental health agenda through collaboration with mental health professionals and policy makers
1996	The Domenici-Wellstone Illness Parity Amendment means that businesses with more than 50 employees will have to offer health insurance plans with equal annual and lifetime limits for mental and physical illnesses
	Public Law 104-21 prohibits payment of SSDI and SSI benefits to persons whose disability is based on drug addiction or alcoholism
1997	Kansas v. Hendricks. Sex offenders can be civilly committed
	Charles Q. v. Houston (Pennsylvania). State psychiatric hospital patients with the dual diagnoses of mental illness and mental retardation can be served in the community
1988	Kathleen S. v. Department of Public Welfare (Pennsylvania). Under the ADA, former patients of the former Haverford State Hospital have a right to placement in the most integrated setting appropriate for their needs
1999	December. Release of the first Surgeon General’s report on mental health
	Olmstead v. L.C. and E.W. The ADA requires states to provide community placement for persons with mental disabilities if the state’s treatment professionals have determined it is appropriate, if it is not opposed by the individuals affected, and if it can reasonably be provided considering state resources and the needs of other disabled persons
	First White House Conference on Mental Health
2000	Ticket to Work and Work Improvement Act increases level of income disabled persons can earn before losing Medicaid and extends period of time an individual can work and continue to receive Medicare
	President Clinton signs a bill authorizing $10 million for mental health courts over four years
2001	February 1. President George W. Bush announces the New Freedom Initiative, a broad plan to provide $5 billion over five years to help Americans with disabilities become better integrated into communities and workplaces
	Released as a supplement to the 1999 report, the Surgeon General’s report, Mental Health: Culture, Race and Ethnicity documents a disproportionately high burden of disability from mental illness among African Americans, American Indians, Asian Americans, and Hispanic Americans
2002	Toyota Motor Manufacturing, Kentucky, Inc. v. Williams. ADA must be strictly interpreted to limit the number of people who can qualify as disabled
	November. Release of the Interim Report of the President’s New Freedom Commission on Mental Health. Report highlights five areas 1.Fragmentation and gaps in care for children 2.Same for adults 3.High unemployment and disability for people with mental illness 4.Older adults with mental illness are not receiving treatment 5.Mental health and suicide prevention are not national priorities
2003	Formation of the Coalition Against Psychiatric Assault (CAPA), a Toronto (Canada)-based organization whose members are “committed to dismantling the psychiatric system”, “see the very concept of mental illness as flawed,” and “oppose the violation of human rights which is endemic to psychiatry”
	May: President’s New Freedom Commission submits Achieving the Promise: Transforming Mental Health Care. Released by the White House in July, the report suggests six goals and recommendations for a transformed mental health system 1.Americans understand that mental health is essential to overall health 2.Mental health care is consumer- and family-driven 3.Disparities in mental health services are eliminated 4.Early mental health screening, assessment, and referral are common practice 5.Excellent mental health care is delivered and research is accelerated, and 6.Technology is used to access mental health care and information Passage of Medicare Prescription Drug, Improvement and Modernization Act of 2003 introduces Medicare Part D with an implementation date of 2006
2005	APA honors Dorothea Dix with its first Posthumous Fellowship
	APA launches HealthyMinds.org, a consumer-oriented website to educate the public about mental health resources and treatment
	Institute of Medicine (IOM) publishes, Improving the Quality of Health Care for Mental and Substance-Use Conditions: Quality Chasm Series
2006	NAMI publishes, Grading the States: A Report Card on America’s Health Care System for Seniors Mental Illness. Nationally, the grade was D. No state received an A and only five states obtained a B
	From Study to Action: A Strategic Plan for Transformation of Mental Health Care sets out models for understanding and organizing transformative systems change
	Roadmap to Seclusion and Restraint Free Mental Health Services emphasizes culture change within organizations as the fundamental change to reducing restrictive interventions
	DBSA publishes a workbook to help individuals set goals for their recovery: Next Steps: Getting the Treatment You Need to Reach Real Recovery
	Mental health consumer-survivors form a national coalition of organizations run by consumers, representing 28 states and the District of Columbia, to ensure they have a major role in the development and implementation of national and state policies
2008	March 5. US House of Representatives passes H.R. 1424, the Paul Wellstone Mental Health and Addiction Equity Act. This legislation expands the 1996 Mental Health Parity Act. The Senate had previously passed S.558, Mental Health Parity Act of 2007
	May 3. Enactment by the United Nations of “The Convention of the Rights of Persons with Disabilities”
	July 9. US Senate joins US House of Representatives in voting to end discriminatory copay for psychiatric outpatient visits by passing the Medicare Improvements for Patients and Providers Act. Coinsurance differential to be phased out by 2014
	October 3. President Obama signs the Paul Wellstone and Pete Domenici Mental Health and Addiction Equity Act of 2008. The effective date of the law is January 1, 2010
	US Congress overturns Supreme Court decisions that narrowed the applicability of the ADA by the ADA Amendments Act
	President Bush signs the Genetic Information Nondiscrimination Act of 2008 which prohibits discrimination by insurers and employers due to genetic makeup or family history
	SAMHSA publishes, Self Disclosure and Its Impact on People Who Receive Mental Health Services
2010	March 1. The decision in DAI v. Patterson means that the 4,000 residents of New York State adult homes of 120 or more beds are qualified to live in supported housing. NYS is ordered to create 1500 supported housing units per year for 3 years. The state must employ peer bridgers to assist in the process
	March 23. President Obama signs the Patient Protection and Affordable Care Act with an implementation time line from 2010 to 2014