National Council on Disability
January 20, 2000

National Council on Disability
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This report is also available in braille and large print, on diskette and audiocassette, and on the Internet at the National Council on Disability's award-winning Web page (http://www.ncd.gov/newsroom/publications/publications.htm).

The views contained in this document do not necessarily represent those of the Administration because this document has not been subjected to the A-19 Executive Branch review process.

Letter of Transmittal

January 20, 2000

The President
The White House
Washington, DC 20500

Dear Mr. President:

I am pleased to submit the National Council on Disability's (NCD) report From Privileges to Rights: People Labeled with Psychiatric Disabilities Speak for Themselves, which is based on the testimony of people with psychiatric disabilities who testified at an NCD hearing in 1998.

All the recommendations in this report emphasize the basic principle that people with psychiatric disabilities are, first and foremost, citizens who have the right to expect that they will be treated according to the principles of law that apply to all other citizens. All laws and policies that restrict the rights of people with psychiatric disabilities simply because of their disabilities are inharmonious with basic principles of law and justice, as well as with such landmark civil rights laws as the Americans with Disabilities Act.

We call on you, Mr. President and Congress, to address the problems described in this report, particularly by ensuring that people with psychiatric disabilities themselves are involved in a major way in making the policy changes that will enable them to claim their full citizenship rights.

We look forward to the day when the label of psychiatric disability has no more effect on people's rights than does the existence of any other disability label. Until that day, NCD believes that people with psychiatric disabilities will remain among the most underprivileged and disadvantaged of American citizens.

Sincerely,

Marca Bristo
Chairperson

(The same letter of transmittal was sent to the President Pro Tempore of the U.S. Senate and the Speaker of the U.S. House of Representatives.)

NCD MEMBERS AND STAFF

Members

Marca Bristo, Chairperson
Kate P. Wolters, First Vice Chairperson
Hughey Walker, Second Vice Chairperson

Yerker Andersson, Ph.D.
Dave N. Brown
John D. Kemp
Audrey McCrimon
Gina McDonald
Bonnie O'Day, Ph.D.
Lilliam Rangel-Diaz
Debra Robinson
Shirley W. Ryan
Michael B. Unhjem
Rae E. Unzicker
Ela Yazzie-King

Staff

Ethel D. Briggs, Executive Director
Mark S. Quigley, Public Affairs Specialist
Kathleen A. Blank, Attorney/Program Specialist
Geraldine Drake Hawkins, Ph.D., Program Specialist
Susan Madison, Fellow
Allan W. Holland, Accountant
Brenda Bratton, Executive Secretary
Stacey S. Brown, Staff Assistant

Report Project Team

Rae E. Unzicker
Kate P. Wolters
Debra Robinson

The National Council on Disability (NCD) wishes to express its gratitude to Leye Chrzanowski, Mike Ervin, and Judi Chamberlin for their assistance in drafting this report. NCD also wishes to thank those who testified at the Albany, New York, hearing on November 20, 1998, as well as those who submitted written and other forms of testimony.

For many people, testifying and submitting testimony was an act of real courage. NCD recognizes and acknowledges this fact.

This report is based on their testimony.

Table of Contents

Acknowledgments

Executive Summary

Chapter 1

When Helping Hurts
Public Policy Recommendations

Chapter 2

Creating New Lives: Independent Housing, Economic Supports, Meaningful Work
Public Policy Recommendations

Chapter 3

Patients' Rights: Parity, Alternatives, Inclusion
Public Policy Recommendations

Chapter 4

Criminal Justice
Public Policy Recommendations

Chapter 5

I Had to Give My Child Away Because She Has a Disability
Public Policy Recommendations

Chapter 6

A Zillion Forms and Still No Civil Rights
Public Policy Recommendations

In Conclusion

Glossary

Appendix

Mission of the National Council on Disability

The National Council on Disability (NCD) is an independent federal agency mandated to make recommendations to the President and Congress on disability issues. NCD generally does its work in a cross-disability manner, emphasizing that people with disabilities should be the ones who make the major decisions about their lives. NCD endorses and supports the principles of independent living, which has achieved the success it has because it is rooted in two unwavering principles: self-determination and consumer direction.

People with psychiatric disabilities are routinely deprived of their rights in a way no other disability group has been. In order to learn more about the problems of psychiatric disability, NCD conducted a hearing specifically on this topic. At the hearing, held in Albany, New York, in November 1998, NCD heard testimony from mental health professionals, lawyers, advocates, and relatives of people with psychiatric disabilities. However, unlike most investigations on the topic of psychiatric disability, the primary participants in this hearing were people with psychiatric disabilities themselves, who testified passionately and eloquently both about the mistreatment they had experienced or witnessed, and their proposals for real and viable change. NCD heard testimony graphically describing how people with psychiatric disabilities have been beaten, shocked, isolated, incarcerated, restricted, raped, deprived of food and bathroom privileges, and physically and psychologically abused in institutions and in their communities. The testimony pointed to the inescapable fact that people with psychiatric disabilities are systematically and routinely deprived of their rights, and treated as less than full citizens or full human beings.

Forced treatment and abuse aren't synonymous with healing. When persons are admitted in a general hospital for any other problems--stroke, cancer, broken hip, X rays, tests--these persons wouldn't dream of allowing the doctors, nurses, or nursing aides to l ock them up, shock them up, tie them up, or drug them up, and the staff wouldn't do it to them. Those patients are treated with compassion, caring, respect, and dignity, and persons who have serious enough emotional/mental problems need to be treated the same. (Bernice E. Loschen)

Finally, it is important to realize how cruelly this system preys on the worst fears and vulnerabilities of people in crisis. They isolate you from the rest of the world, and they become your only reference point. When they accuse someone of being treatment resistant, they are accusing them of not wanting to change their lives. I was told that this was the end of the line for me. If this didn't work, nothing would, and if I left, I would very likely kill myself. During the entire length of my treatment, they did nothing constructive for me, and they hurt me deeply. (Diana Rickard)

Joe Young of the New Jersey P&A testified about abuses he has witnessed in mental institutions.

Among the more egregious concerns: the administration of medication, often without consulting the resident, likely without informed consent, frequently with limited understanding of the likely effect on this particular individual, including possible long-term side effects, and often for reasons of control rather than treatment; the absence not just of regular effective treatment programs, but of any purposeful activity (residents can still be seen sleeping in hallways and in the dayroom when bedrooms are locked); the arbitrary (and often dangerous) application of restraints, seclusion, and isolation; and the continued warehousing of individuals for months, if not years, after the expiration of any determination of [danger]. (Joe Young)

Diana Rickard testified about the degrading extent of the denial of basic human rights while she was institutionalized. The unit structure is based on privileges and punishments, which are referred to as consequences, since they maintain these are not punitive. [The structure] will not allow any kind of privacy whatsoever, and everything is a potential treatment issue, including nail-biting and not making one's bed. They maintain control through humiliation and fear of humiliation. (Diana Rickard)

NCD heard many reports of the routine use and overuse of psychiatric drugs, often against people's will.

When I was in a psychiatric facility, because I questioned conditions, I was dragged into solitary confinement and held down on a bare mattress, forcibly injected with powerful psychiatric drugs, and held in solitary confinement. And I found since then that this is routine, that this is happening all over the--all over the psychiatric system. Usually forced psychiatric drugging occurs behind institutional walls, but in the last few years coerced drugging is now out in the community. Thirty-six U.S. states and the District of Columbia have involuntary outpatient commitment laws, which allow people to be court ordered to take their psychiatric drugs against their expressed wishes, even if they're living at home. (David Oaks)

Even though most people with psychiatric disabilities are capable of participating in the decisions affecting their own care, they are often subjected to forced treatment. Given appropriate supports and full protection of their civil rights, the great majority of people with psychiatric disabilities are quite able not only to participate in their own health care but to become fully productive and creative members of mainstream society. But those simple supports and protections are rarely provided. Millions of people with psychiatric disabilities exist as virtual outcasts. This massive discrimination costs our nation uncounted billions of dollars in obsolete services and lost productivity. More important, in the land of liberty and justice for all, it is morally intolerable. (Justin Dart, April 20, 1999)

Based on the testimony it received, NCD has concluded that the manner in which American society treats people with psychiatric disabilities constitutes a national emergency and a national disgrace. Because people with psychiatric disabilities are routinely deprived of their most fundamental rights, NCD believes that drastic change is necessary in a number of systems that deal with this population. Changes must be made not only in the mental health system, but in the criminal and civil justice systems, housing, income supports, education, job training, and many others, so that people with psychiatric disabilities are guaranteed their fundamental rights as American citizens.

NCD has also concluded that one of the reasons public policy concerning psychiatric disability is so different from that concerning other disabilities is the systematic exclusion of people with psychiatric disabilities from policymaking. It is rare that people with psychiatric disabilities are heard in public-policy forums, and when they are, it is usually in token numbers. NCD's hearing was unique because it focused its attention on the direct experiences of people with psychiatric disabilities themselves, and their calls for fundamental change.

The foremost change that is needed, as referred to by speaker after speaker, is the elimination of coercion from the provision of mental health services. Involuntary commitment and forced treatment, which often go unquestioned in discussions of mental health policy, were described again and again as being among the most painful and difficult experiences of people's lives. In addition, coercion was repeatedly noted as being a barrier to seeking out voluntary treatment, since people knew that once they entered the treatment system they could be coerced or involuntarily committed at any point. At a time when American citizens are being urged to do away with the stigma of mental illness and to voluntarily seek treatment for emotional difficulties, it becomes particularly important to ensure that people are able to do so without surrendering their fundamental rights.

Therefore, NCD recommends that the use of involuntary treatments, such as forced drugging and inpatient and outpatient commitment laws, should be viewed as inherently suspect and as incompatible with the principles of self-determination. Public policy should be directed toward establishing a totally voluntary mental health system.

NCD also recommends that aversive treatments, which involve the infliction of pain or the restriction of movement for purposes of changing behavior, should be banned, since they are also incompatible with self-determination principles. Practices that would often be illegal if administered to people without disabilities are routinely used on people with psychiatric disabilities in the name of "treatment." Such practices should shock the consciences of all Americans.

All of the recommendations in NCD's report follow the same basic principles: that people with psychiatric disabilities are, first and foremost, citizens who have the right to expect that they will be treated according to the principles of law that apply to all other citizens. All laws and policies that restrict the rights of people with psychiatric disabilities solely because of their disabilities are at odds with basic principles of law and justice, as well as with such landmark civil rights laws as the Americans with Disabilities Act (ADA).

NCD calls on the President and Congress to address the problems described in its report, particularly by ensuring that people with psychiatric disabilities themselves are involved in a major way in making the policy changes that will enable them to claim their full citizenship rights. NCD also calls on the media to address the problems described herein, and to avoid the negative stereotyping that has often typified public discussions of mental illness.

NCD looks forward to the day when the label of psychiatric disability has no more effect on people's rights than does any other disability label. Until that day, NCD believes that people with psychiatric disabilities will remain among the most underprivileged and disadvantaged of American citizens.

The recommendations that follow center on the importance of self-determination, dignity, and choice as the cornerstone of public policy for people in this highly disempowered population. As Congress stated when it passed ADA, disability is a natural part of the human experience that in no way should limit the ability of people to make choices, pursue meaningful careers, live independently, and participate fully in all aspects of American society. NCD believes that these recommendations, if implemented, would help to ensure that the public policy goals articulated in ADA become a reality for people labeled with psychiatric disabilities in the United States.

Core Recommendations

Therefore, NCD has developed 10 core recommendations in this report. These policy recommendations should be viewed from the context of the larger report, which follows. These deeply held core beliefs form, however, a dynamic backdrop to highlight the human and civil rights of people who have experienced the mental health system, people who should be viewed as the true experts on their experiences, beliefs, and values, which should be used as a guiding force for changing public policy related to these issues in America.

1. Laws that allow the use of involuntary treatments such as forced drugging and inpatient and outpatient commitment should be viewed as inherently suspect, because they are incompatible with the principle of self-determination. Public policy needs to move in the direction of a totally voluntary community-based mental health system that safeguards human dignity and respects individual autonomy.

2. People labeled with psychiatric disabilities should have a major role in the direction and control of programs and services designed for their benefit. This central role must be played by people labeled with psychiatric disabilities themselves, and should not be confused with the roles that family members, professional advocates, and others often play when "consumer" input is sought.

3. Mental health treatment should be about healing, not punishment. Accordingly, the use of aversive treatments, including physical and chemical restraints, seclusion, and similar techniques that restrict freedom of movement, should be banned. Also, public policy should move toward the elimination of electro-convulsive therapy and psycho surgery as unproven and inherently inhumane procedures. Effective humane alternatives to these techniques exist now and should be promoted.

4. Federal research and demonstration resources should place a higher priority on the development of culturally appropriate alternatives to the medical and biochemical approaches to treatment of people labeled with psychiatric disabilities, including self-help, peer support, and other consumer/survivor-driven alternatives to the traditional mental health system.

5. Eligibility for services in the community should never be contingent on participation in treatment programs. People labeled with psychiatric disabilities should be able to select from a menu of independently available services and programs, including mental health services, housing, vocational training, and job placement, and should be free to reject any service or program. Moreover, in part in response to the Supreme Court's decision in Olmstead v. L C., State and federal governments should work with people labeled with psychiatric disabilities and others receiving publicly-funded care in institutions to expand culturally appropriate home- and community-based supports so that people are able to leave institutional care and, if they choose, access an effective, flexible, consumer/survivor-driven system of supports and services in the community.

6. Employment and training and vocational rehabilitation programs must account for the wide range of abilities, skills, knowledge, and experience of people labeled with psychiatric disabilities by administering programs that are highly individualized and responsive to the abilities, preferences, and personal goals of program participants.

7. Federal income support programs like Supplemental Security Income and Social Security Disability Insurance should provide flexible and work-friendly support options so that people with episodic or unpredictable disabilities are not required to participate in the current "all or nothing" federal disability benefit system, often at the expense of pursuing their employment goals.

8. To assure that parity laws do not make it easier to force people into accepting "treatments" they do not want, it is critical that these laws define parity only in terms of voluntary treatments and services.

9. Government civil rights enforcement agencies and publicly-funded advocacy organizations should work more closely together and with adequate funding to implement effectively critical existing laws like the Americans with Disabilities Act, Fair Housing Act, Civil Rights of Institutionalized Persons Act, Protection and Advocacy for Individuals with Mental Illness Act, and Individuals with Disabilities Education Act, giving people labeled with psychiatric disabilities a central role in setting the priorities for enforcement and implementation of these laws.

10. Federal, state, and local governments, including education, health care, social services, juvenile justice, and civil rights enforcement agencies, must work together to reduce the placement of children and young adults with disabilities, particularly those labeled seriously emotionally disturbed, in correctional facilities and other segregated settings. These placements are often harmful, inconsistent with the federally-protected right to a free and appropriate public education, and unnecessary if timely, coordinated, family-centered supports and services are made available in mainstream settings.

When Helping Hurts

The independent living movement for people with physical disabilities in the United States and abroad has achieved the success it has because it is rooted in two unwavering principles: self-determination and consumer direction. This great civil rights movement has challenged the old assumptions of the medical model--dependency and incompetence--that were used to justify exclusion. The independent living movement requires that people with disabilities must have maximum control of their lives.

An indispensable element of self-determination is the concept of consumer direction. Since people with disabilities are the experts on which social priorities hinder or enhance their own progress, the disability rights movement advocates that people with disabilities should control the organizations that serve and/or represent them. To ensure complete autonomy over their lives, people with disabilities should have ultimate control in allocating resources that support their independence.

The independent living movement has also challenged the role of the medical profession in controlling the lives of people with disabilities. For too long, medical professionals have assumed the right to make decisions for people with disabilities that go far beyond questions of medical treatment. People with disabilities have demanded that they be partners with medical professionals concerning their medical care, and that doctors and others should not be involved in deciding nonmedical aspects of their lives, such as where and how they live or work.

In addition to medical professions, many other individuals and groups have claimed the right to make decisions on behalf of people with disabilities. Family members, educators, legislators, and members of various helping professions have been among the groups that claimed they knew what people with disabilities wanted and needed. The growth of the independent living movement is based on the overriding concept that it is people with disabilities themselves who must make the decisions about how to live, just as other citizens do.

The wisdom of the philosophy of consumer control is now so widely accepted that federal funding of independent living centers is tied to the requirement that their decision-making boards be composed of a majority of people with disabilities. However, even with the significant strides the independent living movement has made, people with disabilities still do not control most of the organizations that provide services to them.

Our nation has declared with resounding statements, particularly the Americans with Disabilities Act (ADA), that the humanity of people with disabilities is to be respected and defended and that they, like all Americans, deserve the freedom and support to go as far as their desires and abilities will take them. Sadly, our nation has forsaken such ideals for people with psychiatric disabilities. The disability rights and independent living movements have in most cases failed to defend with equal passion the rights and humanity of people with psychiatric disabilities. While discrimination and abuse toward people with physical disabilities stirs indignation, at the same time we barely notice that people with psychiatric disabilities endure both on a daily basis. Unfortunately, like most Americans, the disability rights and independent living movements are still too quick to accept powerful demonizing stereotypes that people with psychiatric disabilities are crazy, dangerous, stupid, and evil. Recognizing and eliminating these prejudices will empower people with psychiatric disabilities to achieve the same self-determination now available to many of their peers with physical disabilities, and to build a strong, unified cross-disability movement.

Misconceptions about dangerousness are among the justifications that allow the maltreatment and abuse of people with psychiatric disabilities. With the exception of people with psychiatric disabilities themselves, few people question such routine practices as involuntary commitment, forced drugging, segregation both in institutions and community programs, and the routine use of restraint and seclusion. In order to learn more about the problems of psychiatric disability, the National Council on Disability (NCD) conducted a hearing specifically on this topic. At the hearing, held in Albany, New York, in November 1998, NCD heard testimony from mental health professionals, lawyers, advocates, and relatives of people with psychiatric disabilities. However, unlike most investigations on the topic of psychiatric disability, the primary participants in this hearing were people with psychiatric disabilities themselves, who testified passionately and eloquently both about the mistreatment they had experienced or witnessed, and their proposals for real and viable change. NCD heard testimony graphically describing how people with psychiatric disabilities have been beaten, shocked, isolated, incarcerated, restricted, raped, deprived of access to food and bathroom facilities, and physically and psychologically abused in institutions and in their communities. The testimony pointed to the inescapable fact that people with psychiatric disabilities are systematically and routinely deprived of their rights and treated as less than full citizens or full human beings.

People with psychiatric disabilities are the only Americans who can have their freedom taken away and be institutionalized or incarcerated without being convicted of a crime and with minimal or no respect for their due process rights. They are the only Americans who can routinely be forced to submit to medical treatments against their will. When people with psychiatric disabilities die in facilities that are supposed to serve and protect them, their deaths are rarely investigated, and even when they are, criminal charges are rarely filed. This not happening in some Third World country. This is happening every day in the United States, and such practices are generally ignored or defended by mental health professionals, political leadership, and the media.

Involuntary treatment is extremely rare outside the psychiatric system, allowable only in such cases as unconsciousness or the inability to communicate. People with psychiatric disabilities, on the other hand, even when they vigorously protest treatments they do not want, are routinely subjected to them anyway, on the justification that they "lack insight" or are unable to recognize their need for treatment because of their "mental illness." In practice, "lack of insight" becomes disagreement with the treating professional, and people who disagree are labeled "noncompliant" or "uncooperative with treatment." After years of contact with a system that routinely does not recognize their preferences or desires, many people with psychiatric disabilities become resigned to their fate and cease to protest openly. Although this is described in the psychiatric literature as "compliance," it is actually learned helplessness (also known as "internalized oppression") that is incompatible with hope and with the possibility of recovery.

Traditionally, involuntary commitment has involved the loss of liberty and confinement in a facility. However, more recently the concept of involuntary outpatient commitment (IOC) has become more widespread. IOC laws have been passed in nearly two-thirds of the states, and similar legislation has been introduced in Congress. IOC involves court-ordered treatment (almost always medication) for people who do not meet the standards for inpatient commitment (physical dangerousness to self or others). With more states enacting IOC laws, more people with psychiatric disabilities are being forced to take medications and treatments that can be painful and debilitating. At the same time, the desire of many people labeled with psychiatric disabilities for voluntary services that affect their real-life needs (such as housing, job training, and social support) seldom receive adequate funding. One of the consequences of IOC laws is that they often take money from voluntary programs that promote independence and redirect it toward ever more restrictive and punitive programs.

Antiquated public policy priorities based on the medical model play key roles in perpetuating these injustices. These policies have been shaped without any meaningful participation by people labeled with psychiatric disabilities. America must listen to the eloquent voices of people who live with psychiatric disabilities, and accept them as the real experts who can create humane and empowering public policies dedicated to the ideals of independent living--self-determination and consumer direction. We are locked up without due process and without knowing how long our sentence will be....We become physically disabled by the so-called treatments we are given, such as brain-damaging electroshock and psychiatric drugs. We are the scapegoats of the society....If people can say it is our fault and we are the defective ones, then they don't have to face the issues that are happening in society that are oppressing people. (Janet Foner)

Americans with disabilities commonly confront violations of their civil rights. But the deeply entrenched prejudice, violence, and maltreatment perpetrated against people labeled with psychiatric disabilities extend beyond the realm of civil rights. Again and again, NCD heard moving and powerful testimony describing the deprivation of basic human rights in the name of treatment.

I spent 15 consecutive months on Unit 5 North. This was the single most traumatic experience of my life. The treatment consisted of an unrelenting, 24-hour-a-day attack on my personal autonomy and self-esteem, which I believe only exacerbated my symptoms. (Diana Rickard)

PAIMI's Challenge

Anyone with a psychiatric disability, in fact anyone deemed by a mental health professional or police officer with little or no training to have such a disability, can be legally deprived of their freedom simply with an order from a judge, law officer, or medical professional. The due process procedures to challenge those decisions, and the laws and agencies that are supposed to protect and defend the legal rights of people affected by such orders, are often inadequate, ineffective, underfunded, inaccessible, or disregarded. Even when people are entitled to hearings, these are usually brief, and representation by counsel is often inadequate or nonexistent. The Protection and Advocacy for Individuals with Mental Illness (PAIMI) program of the federally funded Protection and Advocacy (P&A) system is underfunded and inadequate because of statutory limitations to protect people labeled with psychiatric disabilities from abuse and neglect. Further, the PAIMI program itself, in common with other elements of the services system for people labeled with psychiatric disabilities, has little input from the people it is supposed to serve, nor do many agencies reach out to people in recovery to seek their input.

Once the system fails them and they are defined as "mentally ill," people labeled with psychiatric disabilities are isolated from and ignored by society. Joe Young, a legal advocate from New Jersey Protection and Advocacy, testified on the conditions he has observed in institutions:

During the four years that NJP&A has sought to monitor the conditions in the state-run psychiatric hospitals, we have witnessed distressing, but I am certain not unusual, conditions that few, if any, of us would subject ourselves to voluntarily.

Such conditions are not unique to New Jersey. When Marc Keifer entered East Bay Hospital in Richmond, California, on the evening of February 1, 1993, he was a physically healthy 38-year-old man. Less than two days later, Keifer, who carried a diagnosis of paranoid schizophrenia, died alone in an isolation room after he was restrained to a bed with leather straps, belts, and cuffs for 18 hours. A protection and advocacy investigation determined that Keifer likely died from "the undiagnosed and untreated medical condition of anticholinergic toxicity from psychiatric medications, as well as a prolonged period of improperly monitored seclusion and restraint." Such deaths are, unfortunately, not rare.

Because protection and advocacy agencies lack adequate funding and resources, many people are left helpless and defenseless, as the public affairs manager of a California protection and advocacy agency testified:

I am very sad to say that this [investigational] unit is always extremely busy and cannot keep up with all the requests we receive to investigate individual cases of abuse and neglect of people with disabilities in California hospitals and institutions. (Stacie Hiramoto)

P&As responded to 34,000 complaints regarding abuse and neglect in 1998, and have conducted 5,000 death investigations over the past 20 years. Cases that come to the attention of P&As represent merely the tip of the iceberg. The American Journal of Psychiatry reported that as many as 81 percent of women with psychiatric disabilities have been physically or sexually abused in institutions. In the general population, some 1,000 rapes occur each day, but only 300 of them are reported, according to the U.S. Office of Victims Assistance at the U.S. Department of Justice (DOJ). Likewise, the numbers of abuse and neglect complaints P&As responded to may be vastly understated as the majority of these incidents perpetrated against people with disabilities also are never reported.

Based on my 20 years of work with the Commission, I believe too many consumer complaints or suspicions of abuse are buried with the body. (Thomas R. Harmon, director of medical review and investigations, New York State Commission on Quality of Care)

An attorney testified that the statutory eligibility criteria for PAIMI services are too narrowly drawn. (PAIMI services are available to people labeled with psychiatric disabilities who are in institutions; or in the process of being admitted to or transported to one; or who are in a detention facility, jail, or prison; or with respect to matters that took place within 90 days of discharge from such facilities.) Since 1986, when the PAIMI law was enacted, there have been profound changes in the mental health delivery system that are not reflected in existing legislation. Nowadays, when many people labeled with psychiatric disabilities are subjected to outpatient programs that severely curtain their rights, the PAIMI's statutory limitations leave these people without the availability of legal advocacy. Several years ago, funding of legal services programs for low-income people, including people with disabilities, was severely restricted. People testifying indicated concern that P&A organizations will be similarly cut.

I wanted to urge you to advocate to preserve that system, to expand the system, and also to ensure that it does not fall prey to the kind of destructive limitations...that have happened to the federal legal services program. Those sorts of restrictions, if placed on the P&A system, would absolutely devastate the effectiveness. (Cliff Zucker)

Merely increasing the funding for PAIMI programs is not enough. Vigorous efforts must be made to ensure that PAIMIs are responsive to the people they serve. Current federal law requires that people labeled with psychiatric disabilities or their relatives be a majority on PAIMI advisory councils, but there is no similar requirement for their governing boards. While some advisory councils are heavily involved in oversight of the PAIMI program, others have minimal roles and may serve as a mere rubber stamp.

Further, there is an inherent conflict of interest in having federal oversight of the PAIMI program located in the Center for Mental Health Services (CMHS), which is an organization primarily concerned with service delivery and not with legal or rights issues. It would make far more sense to locate federal oversight of PAIMI programs in the Office of Civil Rights of the Department of Health and Human Services, or in the Department of Justice.

Even under the watchful eye of DOJ, people die from abuse and neglect in institutions. Since 1990, DOJ has been scrutinizing Virginia's state mental hospital system, which encompasses 15 facilities that house some 3,800 people. In 1994, after the deaths of three people in one year at the Northern Virginia Mental Health Institute, DOJ initiated an investigation, and in 1996 sued the Institute and two other Virginia facilities because of inadequate care. In 1997, DOJ reached a settlement with the Institute after it agreed to make the required improvements. But in 1998, two more people died. John N. Follansbee, the former medical director of the facility, reported in the June 12, 1999, edition of The Washington Post that the facility is not likely to meet the improvement goals set by DOJ.

The Fall 1997 issue of a Sacramento, California, P&A newsletter reports that a woman died at the Butte County Inpatient Psychiatric Health Facility when she suffered third-degree burns over 80 percent of her body while showering with hot water. Although California regulations covered hot water temperatures in other health facilities, they did not cover the water temperature in psychiatric hospitals. This is just one more example of how people labeled with psychiatric disabilities are denied equal protection of law.

An advocate from the New York State Commission for Quality of Care testified that: Each year the commission receives, reviews, and, where necessary, directly investigates about 7,000 reports of abuse and over 2,000 reports of consumer deaths....We have investigated over 200 deaths where restraint or seclusion was a factor....In our casew ork, we've seen people die or be abused in restraint because a simple request for a second cup of coffee was denied; or a request for a sweater on a very cold day was ignored by staff. (Thomas R. Harmon)

One sexual abuse survivor, who was forcibly restrained while in a mental institution, continues to relive the horror through nightmares. In her testimony about the traumatizing incident, she stated:

Eight men jumped on top of me and wrestled me to the floor. They held me face-down on the floor, restrained me, and then shot me up [with] Thorazine. I then waited in restraints for hours until they thought my behavior was appropriate to be released. I remember begging with them like a dog to release me. I was totally powerless and at their mercy. (Marcie Kelley)

For someone who has survived sexual abuse or who is a victim of rape, restraints are especially abusive and traumatizing. However, many mental health professionals may not recognize this danger. Victim Empowerment: Bridging the Systems--Mental Health and Victim Service Providers, a resource manual produced with a grant from DOJ's Office for Victims of Crime, reports that, historically, mental health counselors, psychologists, and psychiatrists have not received extensive training in victimization issues. At the Erie County Rape Crisis Center in Pennsylvania, for example, approximately 25 percent of clients who were victims of sexual assault/abuse or other crimes were also receiving services at one or more mental health programs.

A 1997 report by the California P&A describes a pattern of improper seclusion and restraint use from 1994 to 1996 at Napa State Hospital (NSH), one of four state hospitals operated by the California Department of Mental Health. Incidents included:

• the death of a deaf man with a physical disability who was improperly restrained in a chair;
  
  
• the unlawful restraint of two children with hearing impairments in their beds; and
  
  
• the seclusion of a child with a hearing impairment in a closet full of soiled linens.

For more than a year and a half, one unit at the hospital repeatedly secluded patients. When the abuse was finally reported by a staff member, the shift leader successfully encouraged other staff to engage in a cover-up, and to lie to management and Napa State Hospital's (NSH's) senior special investigator during the institution's initial internal investigation. P&A investigators also determined that the facility's primary law enforcement officer responsible for investigating the alleged abuse failed to conduct a minimally adequate investigation into the seclusion practices on the unit. The report concluded that both felonies and misdemeanors, including assault, battery, false imprisonment, criminal conspiracy, child endangerment, and corporal punishment of a child may have been committed by NSH employees. But no criminal charges were filed.

Testimony also revealed that the quality of mental and medical services available to people labeled with psychiatric disabilities is questionable. In fact, many consumers complained that the most commonly offered treatments, such as powerful medications with adverse side effects, actually deter and frighten people labeled with psychiatric disabilities away from seeking treatment.

The so-called side effects of many psychiatric drugs are far more noticeable than the so-called main effects. And these drugs have the potential to cause serious physical illness and even death. So, it's very logical that many people would refuse them. (Judi Chamberlin)

I just want to mention a few of the real hazards of psychiatric drugging. The neuroleptics like Thorazine, Haldol, Mellaril, Navane--all those I was on--and now there's also Closapine and Resperdal. All of these drugs can sometimes kill. Now, a lot of our members choose to take these drugs of their own will, and that's their choice. But coercion and force are just plain wrong. In the long run, psychiatric drugs can cause persistent brain changes, making it very, very difficult to withdraw. With the neuroleptics, it peaks at three months after quitting, you can feel crazier, so-called, than you did before you started. This is a brain disability caused by the drug, keeping these people on for life. (David Oaks)

Many of the prescription drugs used in treatment programs do have devastating side effects. Particularly in programs that treat people by force, there are few, if any, opportunities for informed consent, discussion of alternatives, or the right to refuse treatment.

Because of the number of adverse drug experiences received from health professionals and consumers, Zoloft, a frequently prescribed antidepressant, is listed as one of the top 10 ranked suspect drugs in the FDA's 1996 Adverse Drug Experience Report. And Zoloft is only one of a multitude of drugs, all with their own sets of side effects, commonly prescribed to people labeled with psychiatric disabilities.

Much of the testimony concerned people's experiences in institutions with "treatments" that involve the administering of powerful psychiatric medications, electroconvulsive therapy, restraints, calming blankets, and isolation that were administered by their "caregivers." The fact that so many people came forward to talk about these experiences is one more indication of the ways in which such information has been excluded from the development of public policy, because NCD, unlike many other forums, specifically encouraged testimony by people labeled with psychiatric disabilities themselves.

Mental health service provider Marcie Kelley has personally experienced the adverse effects of restraints.

As a survivor of sexual abuse, I personally have found the use of restraints on me more traumatizing than being sexually abused. Being put in restraints is a much longer, traumatic ordeal than being raped. (Marcie Kelley)

In 1997 the Journal of the American Geriatric Society reported that physical restraints used on humans cause severe stress, high rates of serious accidents--including death by asphyxiation--functional decline, psychological distress, increased agitation, circulation impairment, skin breakdown, increased incontinence, decreased mobility, and even irreversible brain damage in postmenopausal women with low estrogen levels. Yet such methods continue to be used in programs for people with disabilities and are defended by many professionals as legitimate treatments. Susan Stefan, J.D., a professor of law at the University of Florida, has conducted extensive research among people with psychiatric disabilities.

I have interviewed many, many people with psychiatric disabilities, and sent a survey to thousands of people, literally, and received hundreds of surveys back, and what the surveys are saying and what the interviews are saying are that people are dying, being injured, and sexually assaulted in institutions. They're being ignored and overmedicated. They're dying and being damaged in restraints. When I tried to relate the individual stories that I was getting to the research and data out in the field, what I discovered is that there is no research, or that it is terribly, terribly difficult to put together, or that it is virtually useless. The voices of people with psychiatric disabilities are silenced. Their stories are dismissed as anecdotal, because of choices we [researchers] make about what information must be gathered and what information may be systematically ignored. (Susan Stefan, J.D.)

Professor Stefan testified that restraints are a crutch for understaffed units and untrained staff, and referred to one study that attributed the near absence of violence on a psychiatric unit to never using restraint or seclusion. She also stated that it is difficult to determine the cause of death and the number of people who die in psychiatric institutions and other psychiatric residential settings because coroners' reports--except for obvious suicides--typically list the cause of death as cardiac arrest, which is questionable since many of the people who die are relatively young and have no previous history of cardiac problems.

In 1994, a 47-year-old grandmother of four was placed face-down in five-point restraints at John George Psychiatric Pavilion in San Leandro, California. Despite her claims that she could not breathe, she remained restrained face-down. Staff left her unattended and locked the door of the seclusion room. When staff returned ten minutes later, she was unresponsive and not breathing. Efforts to resuscitate her failed. The coroner determined that the cause of death was suffocation from being restrained face-down. This was the eighth seclusion or restraint death that the P&A had investigated in three years.

Restraints seemed to be overutilized when psychiatric hospitals are understaffed and do not have time to deal with crisis situations in a civilized manner. I urge the federal government to put stricter regulations in place for the use of restraints, to investigate this form of what I consider to be torture...and to hold hospitals accountable for the murders they commit when using restraints. (Marcie Kelley)

Kelley also commented on Deadly Restraints, a series of articles published in The Hartford Courant from October 10-15, 1998, investigating the illegal use of restraints and other aversive therapies.

Recent reports by the Courant indicate that between 50 and 150 deaths occur every year across the country due to patients being restrained. This statistic is drastically underestimated, since many deaths from restraints go unreported or are covered up by hospital staff. (Marcie Kelley)

Unfortunately, medical examiners rarely connect the circumstances of a death to restraints illegally used by hospital staff, which further complicates investigation and prosecution. As a result of the Courant's series, Congress held hearings and legislation was introduced on the use of restraints. The Health Care Financing Administration (HCFA) recently announced new patient protection standards as a condition for participating in the Medicare and Medicaid programs. Psychiatric hospitals are covered by the new standards, which include the right to be free from restraints and seclusion in any form when used as a means of coercion, discipline, convenience, or retaliation. Nonetheless, if past history is any indication, restraints will continue to be used whenever staff members decide they are necessary, and patients will continue to have little recourse, since restraints are still considered a legitimate form of treatment.

The HCFA has regulations restricting restraint use in intermediate care facilities for people with developmental disabilities and in nursing homes, but in testimony before Congress, William J. Scanlon, the director of the General Accounting Office's (GAO) Health Financing and Public Health Issues within the Health, Education, and Human Services Division, reported that despite such regulations, more than one in four nursing homes nationwide have serious and often repeated deficiencies that result in immediate jeopardy and harm to residents.

In brief, we found that neither complaint investigations nor enforcement practices are being used effectively to ensure adequate care for nursing home residents. As a result, allegations or incidents of serious problems, such as inadequate prevention of p ressure sores, failure to prevent accidents, and failure to assess residents' needs and provide appropriate care, often go uninvestigated and uncorrected. Our work in selected states reveals that, for serious complaints alleging harm to residents, the com bination of inadequate state practices and limited HCFA guidance and oversight have resulted in policies or practices that may limit the number of complaints filed; serious complaints alleging harmful situations not being investigated promptly; and incomplete reporting on nursing homes' compliance history. (Congressional testimony of William Scanlon, March 22, 1999, Nursing Homes: Stronger Complaint and Enforcement Needed to Better Assure Adequate Care, GAO/T-HEHS-99-89, March 22, 1999)

If such abuses can go on in facilities where regulation supposedly exists, it is clear that the lesser regulation of psychiatric facilities results in even more abuse and neglect than exists in nursing homes.Problems with overdrugging and restraints were not the only issues raised by the hearing. Other attendees testified about the devastating effects of electroconvulsive therapy (ECT). Sharon Frieler, a person with a psychiatric disability and a member of a PAIMI advisory council, spoke of witnessing the toll ECT had taken on others.

You lose parts of your life, your memories. I, myself, personally, am against ECT treatments because it is only a band-aid for the person's problems. In many cases, it destroys parts of your life; it does not enhance life. (Sharon Frieler)

In March 1998, the U.S. Department of Health and Human Services released the Electroconvulsive Therapy Background Paper prepared by Research-Able, Inc., a Vienna, Virginia, contractor for the U.S. Center for Mental Health Services (CMHS), a component of the Substance Abuse and Mental Health Services Administration (SAMHSA). This 17-page background paper commissioned by CMHS summarized current knowledge, consumer and public views, relevant laws, and research priorities regarding ETC. The report indicated that 43 states regulate the use of ECT, but despite these state laws, "physicians and facilities comply neither with the letter nor the spirit of the laws, nor with professional guidelines." As is typical, people with direct experience of ECT had little opportunity to develop or comment on the report; if they had been given the opportunity for meaningful input, the report would have been far different. Few subjects within psychiatry arouse such controversy as ECT; the NCD hearing was one of the few opportunities shock recipients have had to testify publicly to a government body about their experiences.

Again and again, NCD heard testimony that graphically illustrated the overall loss of rights experienced by people labeled with psychiatric disabilities. The Wisconsin Coalition for Advocacy, for example, conducted in-depth interviews at a psychiatric hospital in Madison and uncovered:

• coercion to obtain patients' consent;
  
  
• failure to honor the requests of people who refused treatment;
  
  
• failure to provide patients with sufficient information about the procedure to allow them to make an informed decision; and
  
  
• absence of consent for a procedure to treat people who were mentally unable to give consent.

Forced drugging both inside and outside institutions was the source of some of the most painful memories for many speakers. Steven Schwartz, J.D., the director of the Center for Public Representation in Massachusetts, urged careful scrutiny of the efficacy and advisability of the increased and widespread use of outpatient civil commitment and forced treatment. He noted that involuntary treatment laws are in response to the handful of individuals with mental disabilities who have committed acts of violence.

Forced drugging does not occur only within the confines of institutions. Many people testified that involuntary outpatient commitment (IOC) or assertive community treatment (ACT) programs make it possible for people labeled with psychiatric disabilities living in community settings to be required by courts to take medications or risk being institutionalized. According to testimony, some 36 states and the District of Columbia have enacted outpatient commitment laws. The overwhelming majority of those who testified are against such forced treatment.

Joseph Walsh, the coordinator for the Broom County, Recipient Affairs Office in Binghampton, New York, testified that IOC is due to the hysterical reaction to a few very dramatic and highly publicized incidents. Negative media reports incite public fear of and retribution for millions of people labeled with psychiatric disabilities who are law-abiding citizens. Walsh stated that anyone in New York with a psychiatric diagnosis is faced with the prospect of compliance with a judge's order, at the behest of a psychiatrist, to take their medicine, or else.

Nor was he the only person to testify as to the negative effects of IOC:

Society is so invested in its search for magic bullet pharmaceuticals that it ignores the innate ability of the individual to effect their own recovery from psychological distress. (Angela M. Cerio)

In contrast, written testimony provided by Mary T. Zdanowicz, Esq., the executive director of the Treatment Advocacy Center (TAC), expressed concern that laws enacted "to prevent the use of assisted treatment unless individuals present an imminent danger to themselves or others" have a deadly outcome that is evident in media headlines about "violent episodes involving individuals with untreated psychiatric disabilities." In fact, TAC has compiled a database of 400 such incidents. TAC promotes programs for assertive community treatment programs and a repeal of the Medicaid Institutions for Mental Illness exclusion, which prevents Medicaid reimbursement for people between the ages of 21 and 64 who are otherwise eligible for inpatient treatment if a facility has 16 or more beds.

TAC's written testimony endorsing the use of assertive community treatment programs also urged that federal funding priorities be rearranged to encourage states to use commitment standards based on severity of psychiatric disability rather than threat of dangerousness, and to implement outpatient commitment laws. Rael Jean Isaac, who co-authored Toward Rational Commitment Laws with D. J. Jaffe, a board member of the National Alliance for the Mentally Ill (NAMI), wrote, "I strongly support involuntary intervention in the case of individuals too sick to know they are sick--which comprises a large portion of the seriously mentally ill."

One mental health administrator described TAC as a well-funded organization that uses double-speak, such as referring to outpatient commitment as "assisted treatment," to appeal to the public's ignorance about people with psychiatric labels.

[TAC] argues that people who reject mental health services are too "sick" to have "insight" into our conditions, and thus must be forced to accept treatment. For many people [with psychiatric disabilities], rejecting these services is a rational reaction to their negative experiences in the mental health system. (Darby Penney)

Steven Schwartz, J.D., of the Center for Public Representation framed his argument against forced treatment in these terms:

Massive deprivations of liberty to possibly prevent a small number of incidents should not be countenanced under our system. Legislatures in states that have rejected abandoning civil liberties in the name of treatment, the softening of civil commitment s tandards, and the imposition of more forced treatment are under pressure to enact laws that make forced treatment easier. There is substantial literature from which to argue forced treatment does not work. (Steven Schwartz, J.D.)

The overwhelming amount of testimony concerned the harmfulness of involuntary interventions on people's sense of dignity and self-worth, and, further, contended that such interventions were seldom helpful in assisting people either with their immediate problems or with their long-range ability to improve their lives. NCD heard numerous eloquent pleas for services that were responsive and respectful, and which allowed recipients the same rights and freedoms other citizens take for granted. It is important to keep in mind that the hearing was one of the rare opportunities for people labeled with psychiatric disabilities themselves to be the major voice in a government-sponsored inquiry into mental health issues. It is common for mental health policy discussions never to mention words such as "involuntariness" or "force," because these topics are seldom addressed except by people who have suffered because of them. In fact, there seems to be a tacit acceptance among policymakers and the media that people labeled with psychiatric disabilities "need" to be forced "for their own good," and the question of whether such force belongs in a system of medical treatment rarely is systematically examined.

I'm executive director of the National Empowerment Center, a board-certified psychiatrist, and a person with a history of a psychiatric disability. I want to point out, first of all, the importance of people having choice and having a say in voluntary se rvices. As a person who recovered from schizophrenia, I find that the most important elements are having a trusting relationship with somebody who cares about you and can understand you and get to know you, and make it worthwhile for you to return to the community and to some productive role. It's also important that people have resources, have education, jobs, and that these not be under coercive conditions. (Daniel Fisher)

The independent living movement's demand for self-determination in crafting policy and making decisions on all levels was also frequently echoed.

It's just really important to be recognized as another group that is demanding the same thing that people with physical disabilities are asking for, that racial minorities and ethnic minorities and sexual minorities are asking for, and it's the right to speak for ourselves, to represent our own interests, and to be regarded as credible experts on what it is that we need. (Judi Chamberlin)

The first point is that we speak for ourselves. (David Oaks)

The overwhelming majority of those testifying were against forced treatment. They echoed feelings of abandonment, helplessness, and vulnerability, and called for a total ban of all involuntary treatment and outpatient commitment laws. They also related many stories showing that involuntary treatments are often used when people are not dangerous to themselves or others but only bothersome to relatives or neighbors.

But the popularity of outpatient commitment and other laws that force treatments on people labeled with psychiatric disabilities both inside and outside institutions shows a growing hostility toward these very real sentiments. It is essential that Congress and policymakers hear from those who are victimized and view the need for such laws with deep skepticism. Quite often, forced treatments are the easy way out. They debilitate people who want to enjoy life and who can be productive if the time is taken to work with them to design proper treatment courses, which usually include assistance with housing, income supports, and other real-life needs. Forced treatments should have to meet a heavy burden of proof that they are indeed the absolute last resort. They represent the worst violations of the right to self-determination.

Self-determination is vital for more than just symbolic reasons. Detached, ivory tower policymaking based on input from experts, and that excludes participation from people labeled with psychiatric disabilities themselves, results in wasteful and ineffective one-size-fits-all public policy that doesn't efficiently meet the needs of those it is intended to serve.

NCD has developed and endorsed a wide array of public policy resolutions and recommendations. Most of them relate to the 10 core recommendations. Much of the body of the larger report lead to the development of those 10 critical recommendations.

Government civil rights enforcement agencies and publicly funded advocacy organizations should work more closely together and with adequate funding to implement effectively critical existing laws such as the Americans with Disabilities Act, Fair Housing Act, Civil Rights of Institutionalized Persons Act, Protection and Advocacy for Individuals with Mental Illness Act, and Individuals with Disabilities Education Act, giving people labeled with psychiatric disabilities a central role in setting the priorities for enforcement and implementation of these laws.

Congress should increase DOJ funding to investigate and monitor institutions under the provisions of the Civil Rights of Institutionalized Persons Act of 1980 (CRIPA). When a pattern of abuse and patient rights violations occur, DOJ should promptly investigate and, if warranted, prosecute. Negotiated agreements to improve conditions are worthless if the provisions of such agreements are not monitored to ensure compliance.

Congress should expand the scope of jurisdiction of protection and advocacy organizations and increase and maintain sufficient funding for P&As. P&As have a congressional mandate to investigate incidents of abuse and neglect; however, P&As often have difficulty accessing facilities or records, despite their mandate. Congress should also mandate that people labeled with psychiatric disabilities sit in representative numbers on the governing boards of P&A agencies, not just on advisory councils. The number of people labeled with psychiatric disabilities should be proportionate to the amount of funding for the PAIMI program within the overall P&A budget.

Incidents of deaths, abuse, and other crimes occurring in institutions should be quickly investigated by local police and expert criminal investigators who are independent of institutions. In-house investigations conducted by inexperienced personnel can compromise future criminal and civil litigation.

With the elimination of state funding for prison legal service agencies, it is essential that protection and advocacy services are available to people labeled with psychiatric disabilities in correctional facilities. Congress should increase funding for protection and advocacy organizations to accommodate the increased workload. Current funding levels do not adequately cover enforcement of laws that protect the rights of people with disabilities.

In March 1999, when he introduced H.R. 1313, the Patient Freedom From Restraint Act, Representative Pete Stark (D-CA) said:

Documentation of these cases is an essential mechanism for protecting the rights and liberties of the patients.

People testifying who were subjected to aversive treatments, as well as advocates, attorneys, and others, were so compelling and united on this issue that they command credibility. Congress should ban restraints and other "therapies" such as wet/cold therapy and calming blankets that restrict people's freedom of movement, by linking their use to withholding Medicaid and Medicare reimbursement to providers using such methods unless their efficacy can be proven through independent research in which people labeled with psychiatric disabilities play a major role. The culture surrounding the use of restraints, isolation, and other aversive therapies must change. Staff should view these methods as treatment failures. Evidence demonstrates that use of restraints and seclusion can be drastically reduced and replaced by effective alternatives when there is a management commitment to do so. Simply restricting the use of restraints may not be sufficient, as systems may simply move to different forms of restraint (such as chemical restraints) or continue their use "informally."

Even proponents of electroconvulsive therapy (ECT or shock treatment) admit that it is a highly controversial procedure. Many of those who have been subjected to it consider it to have been extremely physically and emotionally damaging, and many believe that it has had long-lasting adverse effects, particularly on memory. The stories of those who testified as to the harmfulness of ECT in their own lives were heart-rending, especially since many witnesses were given the procedure without full informed consent, including information about the risks of long-term memory loss.

Nonetheless, neither congressional hearings nor other government proceedings have ever heard from shock survivors and other opponents of shock in representative numbers. More often, the proponents of shock have either authored the reports or had major involvement in writing them, often without disclosing conflicts of interest (such as financial involvement with the manufacturers of shock machines), while opponents of shock treatment have been excluded from the process.

The principles of self-determination dictate that recipients of mental health services should play a major role in the deliberations concerning every issue that impacts their lives.

Creating New Lives: Independent Housing, Economic Supports, Meaningful Work

The success of the independent living movement in America is due to the authentic resonance of a philosophy of self-determination, in which people with disabilities find strength, support, inspiration, and expertise among their peers. People labeled with psychiatric disabilities place an equally high value on self-determination and interaction with their peers; however, they rarely achieve either.

We want to be able to decide for ourselves where we live, how we spend our time, and if we decide that we need some kind of help or assistance in our lives, it should be up to us to say...what kind of assistance we need. And very often...what people desire is not psychiatric assistance but peer support--help from other people who have gone through the same kinds of experience that they have, and who have a gut-level knowledge of what it's like. (Judi Chamberlin)

A one-day census of inpatient clients conducted by SAMHSA in 1994 reports 236,110 people labeled with psychiatric disabilities were receiving 24-hour hospital and residential treatment--a marked decrease from the 471,452 people who received services at similar facilities in 1969, when deinstitutionalization of people labeled with psychiatric disabilities first began. Unfortunately, during the following decades, as more and more people labeled with psychiatric disabilities left institutions or remained in their communities, federal, state, and local governments failed and continue to fail to provide the needed community-based services, and virtually all of the community services that were provided continued the paternalistic practices of the large institutions they replaced.

Mental Health, United States, 1998, published by the Center for Mental Health Services (CMHS), estimates between 10 and 13 million people in the entire U.S. adult population had a serious mental illness in 1990--the last year such data were collected. (These numbers do not reflect people who were homeless or institutionalized.) Despite such large numbers of people labeled with psychiatric disabilities, the GAO reports that in fiscal year 1996, SAMHSA block grants to state and local governments totaled only $275 million for mental health services (the vast majority of mental health services funding comes from state and country governments). State and federal funding shortfalls have created gaps and shortages in treatment, housing, and vocational and other services. Further, only a tiny fraction of these funds has gone toward consumer-controlled, peer-run services.

Because of the very real stigma of a psychiatric label and the discrimination encountered by people labeled with psychiatric disabilities, many people with psychiatric diagnoses prefer to hide their status wherever possible. Simply by virtue of their diagnosis or label, people labeled with psychiatric disabilities are perceived as second-class citizens, murderers, people to be feared, people too incompetent to make their own decisions, malingerers, and many other stereotypes.

The single greatest need in search of redress is the prejudice and discrimination suffered by people living with mental illnesses. We are discovering that prejudice and discrimination exist everywhere. They exist in the general society, in our system of medical care, justice, and prison systems; even in our electoral system. (Joseph Glazer)

One of the things I've heard the most from consumers is, "We don't want to be schizophrenic or borderline or whatever. That is a diagnosis. That's not me. I am a human being. I don't want to be identified as a borderline." (Dennis Morrisey)

In reality, people with mental disabilities are no more violent than the average citizen. The MacArthur Violence Risk Assessment Study, released in 1998, found that, in the absence of alcohol or substance abuse, people with mental disabilities are "no more likely to be violent than were other people living in their neighborhoods." Said John Monahan, one of the study's authors: "The best epidemiological evidence indicates that major mental disorder accounts for, at most, 3 percent of the violence in American society." (Treatment by Force Is an Attack on Rights Perspective by Sally Zinman, executive director of the California Network of Mental Health Clients, San Jose Mercury News, June 20, 1999.)

Debbie Whittle is an example of someone who sought treatment from private sources and never received a label.

I experienced early trauma, to which I had a set of coping strategies, including disassociation, fantasizing, self-blame, self-hatred. I was afraid of confrontation and rage. I had difficulty expressing anger, yet I cried very easily. I had very low self-esteem, although I looked pretty good and fairly competent on the outside....I never knew what that diagnosis was, if there was one. That is so important. I can't stress that enough. I was never told that my coping strategies were bad or wrong. I was never given the feeling that my attempts to seek help were because there was something wrong with me.

Whittle reiterates the important distinction of living without a psychiatric label and obtaining help from outside the public health system.

What does this story have to do with a hearing on psychiatric disabilities? Everything. Although I consider myself a trauma survivor, I do not consider myself a psychiatric survivor. Why? Because no one ever labeled me that way. I can't help but wonder how different my story would be if I had presented myself to a mental health center. My history is not that different from the majority of folks with psychiatric labels. I can't help but wonder how different most of their stories would be if they had never received a psychiatric label, but were given a chance to heal their losses and traumas without the shame of pathology. (Debbie Whittle)

The lack of self-determination for people labeled with psychiatric disabilities is most apparent in the area of treatment, because unlike a person with cancer, an individual with a psychiatric disability is rarely offered treatment choices. Instead, treatment decisions are made by psychiatrists, social workers, family members, or others without their knowledge or their consent, and they can be deprived of their civil rights at a moment's notice should they not accept the offered treatment "voluntarily."

As long as we have involuntary commitment laws and forced treatment laws, we are not free citizens. It's really a form of legalized discrimination, and I see that these laws are ultimately incompatible with the Americans with Disabilities Act. (Judi Chamberlin)

Many people testified that forced involuntary treatments, in addition to depriving individuals of their rights, also caused physical and mental injuries, and even death. Although one advocate and survivor, Darby Penney, last received involuntary drug treatment in an institution more than 20 years ago, she says it still has an impact on her life. Today, she is very conscious of not doing anything that others would consider "crazy enough to lock me up." She says the psychiatric drugs she received left her with physical disabilities.

According to testimony, people labeled with psychiatric disabilities may be held financially liable for their forced treatment, when insurance refuses to cover it or when they lack insurance.

Penney testified that it is illogical for a system with limited and dwindling resources to force people into treatment. She stated that forcing services on people who do not want them takes scarce resources away from people who do, and reported on an evaluation conducted at Bellevue Hospital in New York City, which indicated that there is no difference in outcomes between people who were subjected to outpatient commitment and control groups.

If the programs are good, people will come. It's possible for states to make people offers that they won't refuse on a voluntary basis. In Massachusetts, we have no outpatient commitment. We have no involuntary care in our community and are able to provide the care, particularly when the states are willing to invest in the support services, on that voluntary basis, in a way that consumers and psychiatric survivors are willing to participate. (Steven Schwartz, J.D.)

Because people labeled with psychiatric disabilities encounter shortages of voluntary treatment options, a lack of affordable housing, and insufficient or inappropriate community-based services, many remain in hospitals or jails, or are homeless. John Rio, a housing advocate from the Corporation for Supportive Housing (CSH) in Manhattan, New York, testified:

One of the things, from my experiences in the field of mental health, is that a lot of people are in hospitals and in jails and held there unnecessarily, or released into the community without adequate community-based services. At CSH, we think that integrated services can be provided through supportive housing; and one strategy is to try to...pose a solution to this kind of a problem. Unfortunately, we don't have enough, and we need more help with changing policies that support the growth of supportive housing and integrated community services. (John Rio)

People in institutions are particularly vulnerable. They are isolated from peer support networks and also from legal advocates.

They isolate you and they become your only reference point. (Diana Rickard)

Once people are institutionalized, they may remain in there long after treatment has ended and they are ready for discharge. For example, testimony revealed that in New Jersey, of the approximately 2,000 people institutionalized in five state-run psychiatric hospitals, about 45 to 50 percent of them have been determined to no longer meet any standard of dangerousness, but they continue to be confined because not enough community services are available.

In June 1999, the Supreme Court issued an important decision in Olmstead v. L.C., which tested the strength of Title II of ADA. The case concerned two women with psychiatric disabilities who asked to receive services in their communities instead of institutions. The Court ruled that when a professional determines that a person with a disability can live in the community effectively, he or she must be offered this choice. To do otherwise is discrimination. There are several caveats in the Court's decision, however. Individuals cannot self-determine where they receive services, and they can receive community-based services only if such alternatives exist. Currently, adequate community-based alternatives simply do not exist in sufficient numbers to allow all people who might qualify under the Olmstead rationale to leave institutions. This problem may be exacerbated in the future since some states have submitted lawsuits challenging Congress's legal authority to mandate that states comply with Title II of ADA.

A lack of affordable housing is another barrier to the community integration of people labeled with psychiatric disabilities. A federal law some people cited as exacerbating the shortage of housing for people labeled with psychiatric disabilities was the Housing and Community Development Act of 1992. Among other things, this law allows public housing authorities to designate for use exclusively by elderly people units that were previously available to both elderly people and to younger people with disabilities. Thus, younger persons with disabilities are no longer eligible to move into these federally funded buildings. Roy Neville, a housing advocate, testified:

Mentally ill people got cut out of apartments and public housing projects that the elderly want for their own. That's discrimination. (Roy Neville)

Neville testified that HUD has attempted to compensate for these cuts by increasing the number of rent supplement programs that provide vouchers and certificates for people with disabilities to obtain housing, but notes:

The public housing agencies don't apply for [these programs], because the application process is too complex. (Roy Neville)

Impact of Designated Public Housing on Persons With Disabilities, a 1998 GAO report, however, concluded that the 1992 law has "had little impact" on the availability of public housing for people with disabilities. But it also noted:

It is too soon to determine the extent to which the Section 8 rental certificates and vouchers set aside for persons with disabilities have helped meet this population's needs. (Impact of Designated Public Housing on Persons With Disabilities, GAO/RCED-98-160, June 1998)

At the time of the GAO review, an Anaheim, California, housing authority had not yet issued any of the 150 vouchers it had received from a mainstream housing program. The housing authority indicated that it expected that all 150 vouchers eventually would be used, however, and it planned to apply for more vouchers since it had 1,500 persons with disabilities on its waiting list. Apparently, this problem extends beyond Anaheim, as Neville testified:

Last summer, over 7,000 Section 8 new certificates and vouchers for people with disabilities were available to communities in New York State, but public housing authorities [failed] to apply for them. We need incentives to make these units available. (Roy Neville)

Ruth Lowenkran, a legal advocate for the Disability Law Center in Albany, noted that other forces are at work to weaken the protections of the Fair Housing Amendments Act of 1988 (FHAA):

There are constant pushes in Congress to eviscerate the protections of the Fair Housing Act, and to narrow the scope of persons protected, and narrow it [to] eliminate the protections for persons with psychiatric disabilities. (Ruth Lowenkran)

An example is H.R. 3206, the Fair Housing Amendments Act of 1998, which, if enacted, would have repealed civil rights protections for people with disabilities and subjected them to renewed discrimination by zoning officials and hostile neighbors. The bill also would have permitted local governments to completely zone out group homes and other community living arrangements. Disability advocates succeeded in fending off this threat. However, there was much testimony indicating that this is a constant battle.

The executive director of the New York State Alliance for the Mentally Ill, Glen Liebman, testified that his organization surveyed its membership on housing. It found that the majority of adult children living with their parents wanted to leave home, but there were no housing options available for them.

We have 143,000 people in New York state with a serious mental illness who use some kind of mental health services. Out of that number, there are 20,000 in some kind of state-supported housing, there are about 6,500 people in state psychiatric hospital beds, and another 11,000 in adult homes. Even if you acknowledge that there are 10,000 people with mental illness in the shelter system, this still means that less than a third of mental health recipients are in housing outside the family. (Glen Liebman)

One result of the lack of affordable housing is the prevalence of homelessness among people labeled with psychiatric disabilities.

Where's everyone else? The bottom line is, either they're living still at home with their family, they're in prison, they're homeless, or they're in a shelter. (Glen Liebman)

The National Resource Center on Homelessness and Mental Illness reports an estimated 600,000 people are homeless in the United States on any given night. Approximately 200,000 of these individuals have serious mental illnesses, such as schizophrenia, bipolar disorder, or major depression, and at least 50 percent of homeless people with serious mental illnesses also abuse alcohol, drugs, or both. Lucy Kim, who is now the administrative coordinator for the Center for Urban Community Services, received Social Security benefits for seven years and testified about her periods of homelessness during that time.

Two of...the seven years, this last span that I was disabled, were spent living in a welfare hotel. And, during that time, I experienced depression, apathy, fear, substance abuse. (Lucy Kim)

Several factors are cited as the primary contributors to homelessness in people labeled with psychiatric disabilities, but blatant discrimination is the most prevalent. Testimony consistently revealed that people labeled with psychiatric disabilities are treated separately and unequally.

In Schenectady, a tenant was being forced out because he made noise in his apartment, and his behavior bothered another tenant. (Roy Neville)

People with mental disabilities are being scapegoated as violent, dangerous [people who] shouldn't be allowed to live in integrated settings with other people. Again, [that is] in spite of the fact that statistically, we're no more likely to commit crimes than anyone else. (Judi Chamberlin)

Also, many people labeled with psychiatric disabilities are institutionalized simply because crisis centers, homeless programs, and emergency shelters are inaccessible or ill-equipped to deal with them. Further, they find it difficult to access permanent housing because of pervasive discrimination. Even with the current FHAA protections in place, landlords and local officials either are unfamiliar with the antidiscrimination provisions of the law as they apply to people labeled with psychiatric disabilities, or they simply ignore them.

Currently the provisions of the federal Fair Housing Amendments Act of 1988 provide good protection against housing discrimination for people with disabilities. Unfortunately, many local jurisdictions and local governments are unaware of this law or are t rying to overturn it. (Stacie Hiramoto)

Testimony also revealed that mandatory participation in programs and services, such as substance abuse programs or more often "medication compliance," is frequently required by people labeled with psychiatric disabilities as a condition to obtain housing or other services.

There should be an unbundling of treatment from housing. Many people choose homelessness rather than submit to psychiatric treatment in enforced spaces. (Daniel Fisher)

The confusing array of government programs is difficult for people labeled with psychiatric disabilities to navigate. In 1996, the GAO reported that all people with disabilities received services through 130 different programs, 19 federal agencies, and a multitude of public and private agencies at the state and local levels, all with varying eligibility criteria.

People labeled with psychiatric disabilities can receive benefits from a variety of federal, state, and private programs such as Medicaid, Medicare, Social Security Disability Income (SSDI), Supplemental Security Income (SSI), various veterans benefit programs, food stamps, workers' compensation, unemployment insurance, private disability insurance, and others.

In many existing federally funded income support programs, eligibility requirements differ. An individual may be eligible for services from one program and ineligible for another, simply because a different definition of disability is applied or because the individual carries a dual diagnosis. As a result, individuals are required to endure a series of application processes.

One of the most contentious aspects of disability research is also the most basic--the definition of disability. Different federal programs use different operational definitions of disability, as do researchers, advocacy groups, and other interested parties. (People with Disabilities: Federal Programs Could Work Together More Efficiently to Promote Employment, GAO/HEHS-96-126)

Testimony also revealed that eligibility criteria are frequently confusing and more stringent for people labeled with psychiatric disabilities than for people with other disabilities. As of December 1997, some 1.1 million people received SSDI benefits, and another 1.2 million received SSI benefits for mental disorders. However, testimony revealed that when people labeled with psychiatric disabilities apply for SSDI or SSI benefits, they face frequent denials, long waits, or stressful appeals. They also encounter a higher rate of denial for initial benefits. In 1997, GAO reported that 39 percent of people with mental illness were initially denied Social Security benefits--a much higher percentage than for other people with disabilities.

Jessica Wolfe testified that her initial claim for Social Security benefits was denied, and she has waited two years for an appeal hearing. Meanwhile, she has no money for therapy, has depleted the family's savings, and she buys food with credit cards.

I understand that there will be a psychological evaluator at the hearing to give testimony about whether my symptoms are severe enough to prevent me from working [at] any job. You know something? According to them it doesn't matter that I cannot make a living....My best hope is getting SSDI, and I am scared I will not get it. (Jessica Wolfe)

As my consumers and my people get to the point where their mental illness prevents them from working, the first hurdle they face is that the applications that they have to fill out for disability and SSI have nothing to do with mental illness. (Dennis Morrisey)

According to GAO, differences in assessments of functional capacity, different procedures, and weaknesses in quality reviews contributed to the Social Security Administration's (SSA) inconsistent decisions. In 1994, SSA began implementation of a disability redesign process that, among other things, will eventually streamline the claims and appeals process. It is expected to be fully implemented in FY 2001.

Roy Neville expressed concern that many people who have psychiatric disabilities but do not have a long-standing diagnosis of severe mental illness are ineligible for SSI or have been dropped from SSI rolls, and are left without financial or other supports.

These people drop out of the safety net...and [are] made to get into the welfare-to-work requirements. They're being cut out of food stamps and child care, job training, and emergency food. And some of them are mothers with children. The number of poor people who visit food pantries in New York is rising rapidly. And there needs to be a safety net for these people who have mental disabilities in the welfare-to-work program. (Roy Neville)

Employer-sponsored short- and long-term disability insurance plans frequently discriminate against people labeled with psychiatric disabilities. NCD heard testimony from a former employee of a Fortune 500 company who received almost six months of short-term disability payments from her