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                    From Privileges to Rights:
People Labeled with Psychiatric Disabilities Speak for Themselves

                  National Council on Disability
                        January 20, 2000

                  National Council on Disability
                  1331 F Street, NW, Suite 1050
                      Washington, DC 20004

                        202-272-2004 Voice
                        202-272-2074 TTY
                        202-272-2022 Fax

  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/publications/publications.html).

     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


                         Acknowledgments

  The National Council on Disability (NCD) wishes to express its
  gratitude to Leye Chrzanowski, Mike Irvin, 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


                        Executive Summary

    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.


                            Chapter 1

                        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.

                  Public Policy 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.


                            Chapter 2

   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 employer of three
   years. But before she was eligible for long-term disability
  benefits, she was notified that her benefits would end. A few
    days later, her employment was terminated. She currently
 receives SSDI, but believes that she would not have been denied
    long-term disability benefits if her disability were not
  psychiatric. She has filed a lawsuit based on discriminatory
  treatment. This case is not an isolated example but is typical
  of long-term disability insurance practice of unequal benefits
          for psychiatric versus physical disabilities.

   People labeled with psychiatric disabilities who attempt to
  return to work face numerous hurdles. State-federal vocational
     rehabilitation (VR) programs, which are directed by the
  Rehabilitation Services Administration (RSA) and which deliver
   services through state and privately operated agencies that
 provide education or training, have not been notably successful
    in assisting people labeled with psychiatric disabilities.

             GAO did find that states purchased more
          services for clients with physical than with
            mental disabilities, more for clients with
            severe than with non-severe disabilities,
            and more for white clients than for black,
              Hispanic, or American Indian clients.
            (Vocational Rehabilitation: Evidence for
            Federal Program's Effectiveness Is Mixed,
                        GAO, August 1993)

   It appears little has changed in the ensuing years. Bernice
                  Loschen testified to NCD that:

          People labeled with psychiatric disabilities
          need to be given equal treatment services as
          everyone else, so they'll have a fair chance
            to get the advocacy help that they need to
          get a job, [the same] as any other client of
            [VR], as persons who use wheelchairs, who
           are blind, and who are deaf--and this isn't
            happening now. These persons deserve [the
            same] dignity and respect as anyone else
                     does. (Bernice Loschen)

 John Rio, of the Corporation for Supportive Housing in New York
  City, testified that new strategies are needed to place people
  labeled with psychiatric disabilities in worthwhile careers.

            Individuals with psychiatric disabilities
          have a right to employment opportunities and
            the services necessary to participate in
          America's workforce. While many areas of the
              country enjoy a healthier economy, our
          clients are not participating to the fullest
            extent possible. We think we need to see
            more involvement from the private sector,
             particularly in employer-based training
            strategies. These strategies are important
          because we need to help clients not just get
          an entry-level job but to start on a path of
            employment that will lead to livable wage
                       careers. (John Rio)

 Rio testified that seven years ago the National Advisory Mental
        Health Council, in coordination with the federal
  Interdepartmental Task Force on Homelessness and Severe Mental
Illness, held hearings in Chicago and published its findings and
    recommendations. He notes that although some improvements
occurred in the service delivery systems, most cases continue to
    "fall short of the mark." In fact, he stated, a number of
  recommendations resulting from those hearings still need to be
                      addressed, including:

    * greater coordination between federal, state, and local
        programs serving people labeled with psychiatric
                          disabilities;

      * expanding anti-stigma activities to dispel harmful
         misconceptions, especially among employers; and

   * creating a wide variety of permanent housing options with
   supportive services that include employment opportunities.

    Rio noted that the Balanced Budget Act of 1997 offered a
  provision for states to buy into Medicaid by adding a category
 for people with disabilities who are working. He says, however,
  only Oregon has successfully made this option available, "but
   not without great difficulty from the Health Care Financing
                     Administration (HCFA)."

He testified that he is encouraged, however, that nearly half of
SSA's 12 demonstration projects to test effective strategies for
    coordinating state workforce systems to help people with
    disabilities return to work and decrease their reliance on
  public supports have elected to focus their projects on people
  labeled with psychiatric disabilities, and stated further that
  other states should consider waiver-based work incentives that
    are not funded in the SSA demonstration projects. He did
                perceive a shortcoming, however.

            As you know, the key to these projects is
               likely to rest in waiver-based work
            incentives. And guess what? These waivers
              will need to be [approved by] HCFA. We
              expect this will be an extraordinary
            challenge for states...the states need a
             partner in HCFA that shares the goal of
            helping people with disabilities work or
              work more. This is a matter of public
                        policy. (John Rio)

      Many people reported that vocational outcomes are more
     successful in community programs that offer a number of
services, such as housing, training, and health care. An example
    is Next Step: Jobs, an employment initiative funded by the
Rockefeller Foundation in 1995, in which 21 nonprofit supportive
  housing agencies partnered with the Corporation for Supportive
  Housing in New York to increase the rates of employment among
   people in supportive housing who faced multiple barriers to
  employment. The project demonstrated that supportive housing
  offered a basic, critical ingredient for positive vocational
    outcomes--that is, continuous case management, permanent
  housing, and a culture supportive of working tenants. However,
  it is important to note that such a model is unacceptable to
  many people labeled with psychiatric disabilities who want to
  work but will not attend programs that require them to accept
                other services they do not want.

      In addition, the National Institute on Disability and
 Rehabilitation Research (NIDRR) has funded several studies that
 evaluate model employment programs, such as Outcomes and Career
  Achievements of Persons with Professional Qualifications Who
  Have Severe Psychiatric Disabilities: The Minnesota Mainstream
  Experience. In sharp contrast to the widely held belief that
people labeled with psychiatric disabilities cannot work, or can
  work only at menial jobs, there are a number of program models
  showing that people labeled with psychiatric disabilities can
   obtain and retain employment if they have the supports they
 want. It is essential that such supports are not "one size fits
     all," but are individually chosen according to what the
              individual in question finds helpful.

  Peer support is an important component of successful community
 reintegration; however, it is often unavailable. Several people
  testified that a lack of peer support for people labeled with
  psychiatric disabilities contributes to their isolation from
  other people labeled with psychiatric disabilities as well as
           other segments of the disability community.

            We need to find a way to have HCFA...fund
            the extraordinarily important consumer-run
           services which play a vital role in helping
             people to emerge from the mental health
            system and not remain a mental patient for
                      life. (Daniel Fisher)

                  Public Policy Recommendations

  It is crucial to ensure that people labeled with psychiatric
    disabilities have control over programs and services that
                      directly affect them.

  People labeled with psychiatric disabilities should be fairly
 represented on boards of all agencies and programs that provide
  services to this population and that receive federal funds. In
  addition, programs that serve all disabilities need to ensure
that consumer representation on their boards includes those with
                    psychiatric disabilities.

 Congress should establish an oversight group composed of people
    with disabilities--including significant numbers of people
    labeled with psychiatric disabilities--to advise SSA and
Congress on the effectiveness of SSA policies and procedures, as
well as the future of its various programs, including SSDI, SSI,
                     Medicare, and Medicaid.

 User-managed peer support programs controlled by people labeled
with psychiatric disabilities should be supported with increased
    federal funding. Public policy should encourage self-help
    approaches as the best way to promote self-determination.

   Medicare and Medicaid waivers should be expanded to support
peer-run programs. HCFA rules should be revised to provide broad
  latitude and financial incentives for such services, in line
  with self-determination approaches for those with physical and
                     cognitive disabilities.

   Congress should fund additional community-based programs to
    eliminate "warehousing" of people labeled with psychiatric
  disabilities in institutions. The fact that large numbers of
people labeled with psychiatric disabilities who want to live in
 the community are unable to do so because there is insufficient
  funding for community programs should be considered a policy
 failure. The institutional bias in funding must be addressed in
  ways that encourage community living and self-determination.

People labeled with psychiatric disabilities should be offered a
     menu of available services and programs to choose from,
    including mental health services, peer support, housing,
    vocational training, and employment. People labeled with
  psychiatric disabilities should be free to reject any or all
   services, and should be able to access those that they want
        without being required to participate in others.

    HUD 811 regulations already contain a prohibition against
  mandatory services for projects supported by these funds. This
    should be expanded to cover all federally funded housing
    programs, including local and private housing programs for
    people with disabilities that receive federal funds. The
    responsibilities of tenants with disabilities should be no
  greater than those of all other public housing tenants--paying
            rent, maintaining a clean home, and so on.

  HUD should increase affordable housing for people labeled with
psychiatric disabilities and combine all of its housing programs
    for people with disabilities--regardless of disability or
                    chronic health condition.

   Using a cross-disability approach to disability would offer
      efficient and equitable delivery of services. Finally,
  segregating people by their disabilities into specific housing
  and other federal programs is discriminatory, creates barriers
  to services, and divides the disability community, as well as
                 creating "disability ghettoes."

  Testimony consistently revealed that homelessness and the lack
    of affordable housing for people labeled with psychiatric
disabilities are major concerns, an indication that existing HUD
              funding levels do not meet the demand.

Congress, therefore, should increase HUD funding for integrated,
 community-based housing for people with disabilities to include
financial incentives for entities providing supportive services.

      While Homeless Assistance Programs (HAP) and Housing
   Opportunities for Persons with AIDS (HOPA), saw significant
  increases in funding, HUD's FY 2000 budget provides only $194
million for Section 811 housing for people with disabilities--no
          increase from HUD's FY 1999 or 1998 budgets.

   HUD should exert tighter oversight over the distribution of
 Section 8 vouchers and certificates to eliminate the backlog of
                   people waiting for housing.

  HUD should assign Section 8 voucher certificates to all people
   who leave institutions, residential facilities, and nursing
     homes, as well as people eligible for Medicaid home and
                    community-based waivers.

 This would eliminate some of the warehousing that was discussed
    in testimony and offer a safety net for people who are in
          transition from institutions to communities.

  HUD should establish a guaranteed loan program targeted at all
  people with disabilities so that they can own their own homes.

  Funding for such a program could be obtained by eliminating or
reducing HUD's 232 program, which provides low-interest loans to
     owners of nursing homes and assisted-living facilities.

      HUD should ensure that priority is given to qualified
    consumer-run disability organizations, such as independent
 living centers, to administer the agency's housing programs for
                    people with disabilities.

    On March 8, 1999, HUD announced the availability of $48.5
  million for new tenant-based rental subsidies for people with
        disabilities--including people with severe mental
   illnesses--through the Mainstream Housing Opportunities for
   Persons with Disabilities Program. For the first time, this
        funding was made available to nonprofit disability
   organizations, as well as to public housing agencies (PHAs)
  deemed qualified to administer the program. Qualified agencies
    operated and controlled by people with disabilities should
    administer housing programs for people with disabilities.
  Nonprofit organizations that are not controlled by people with
              disabilities should not be eligible.

Congress and the administration should continue to block further
  attempts to designate elderly-only housing and all attempts to
remove or reduce the anti-discrimination protections of the FHAA.

  Congress should authorize an independent evaluation of all HUD
  programs and services for people with disabilities, to ensure
    compliance with existing laws, as well as efficiency and
    accessibility of HUD operations and federally funded HUD
                      programs and services.

  The evaluation should include recommendations for improvements
            and equitable methods of service delivery.

        One of the few legal recourses left to victims of
     disability-based discrimination in housing is the FHAA.
   Excluding people labeled with psychiatric disabilities from
    housing is tantamount to endorsing discrimination based on
    stereotypes that would not be tolerated against any other
                    segment of the population.

  Therefore, HUD should launch a comprehensive and sophisticated
  nationwide audit to test and evaluate disability-based housing
 discrimination in urban, suburban, and rural communities around
  the nation, similar to the audit announced by HUD in November
     1998 to combat discrimination against other minorities.

    HUD should initiate an awareness and training program that
   educates people with disabilities, as well as local housing
 officials, landlords, and others receiving federal funds, about
    the protections afforded people with psychiatric and other
disabilities under the provisions of the FHAA. Recipients of HUD
  funds, including local housing authorities, should be required
 to attend mandatory training and demonstrate a minimum level of
   FHAA-disability-related competency and awareness before HUD
                   funds are released to them.

  Also, local independent living centers or similar client-run
    groups should be contracted to conduct voluntary awareness
  training for realtors, leasing agents, and others who do not
 receive federal funds but who would benefit from such training.

DOJ and HUD should enforce vigorously the provisions of both the
    Rehabilitation Act and FHAA, and aggressively pursue legal
  action in instances where people with disabilities are denied
  access to federally funded programs and services or encounter
 housing discrimination. These actions would send a message that
     the laws are strong and that discrimination will not be
                            tolerated.

   Increase a wide array of employment opportunities geared to
 utilize the interests, skills, talents, and expressed wishes of
          people labeled with psychiatric disabilities.

  The successful components of employment demonstration programs
 should be implemented while the identified weaknesses should be
    addressed. Information about successful programs should be
disseminated and shared among agencies, task forces, committees,
 and others concerned with employment of people with psychiatric
    disabilities, and directly with people with disabilities
                           themselves.

  HCFA should revise existing regulations to make it easier for
  states to apply for Medicaid waivers under the Balanced Budget
  Act of 1997 for people with disabilities who return to work.

  The employment experiences of people labeled with psychiatric
 disabilities and their interactions with training providers and
  the state-federal vocational rehabilitation systems should be
included in the development of any employment training programs.

  SSA should implement a disability determination policy that is
consistent and fair. Disability determination specialists should
  receive ongoing training on the new policies and how they may
      apply to people labeled with psychiatric disabilities.

 Congress should mandate that SSA and other federal agencies, as
  well as state, local, and private agencies receiving federal
  funds, review applications and other documents to ensure that
the information contained in them is applicable, accessible, and
  does not violate the rights of people labeled with psychiatric
                          disabilities.

    Congress should allocate additional funding to accelerate
implementation of SSA's disability redesign policy and eliminate
              the existing backlog in SSA appeals.

       Congress should enact legislation that ensures that
  welfare-to-work programs do not deny people with less severe
psychiatric disabilities access to income and other supports and
    should implement a policy that provides short-term income
                            supports.

     Congress should enact mental parity laws for short- and
    long-term public and private disability insurance plans.


                            Chapter 3

        Patients' Rights: Parity, Alternatives, Inclusion

 Because the mental health system has historically been designed
and implemented without the participation of people labeled with
  psychiatric disabilities, there are numerous examples of the
  ways in which the system does not meet people's self-defined
                              needs.

          People labeled with psychiatric disabilities
            should be at major policy decision- making
          meetings. We are excluded systematically, we
          don't have the rich lobbyists, we don't have
            the pipeline into Washington. The policy
          wonks are the ones that are making all these
            decisions about us and for us, and we need
           to find a way to get our people represented
             in a genuine, participatory fashion, in
                housing decisions, Social Security
            decisions, and HCFA health care decisions.
                         (Daniel Fisher)

     NCD heard a great deal of testimony concerning people's
   frustrations with a system that consistently forces them to
accept services they do not want while denying them access to or
          coverage for those things they find helpful.

           In order to recover, one needs to find peer
          support, and in order to do so, one needs to
          have alternative healing techniques, one has
           to have access to those kinds of people and
          treatments that one can control oneself, and
             not perpetually have to be dependent on
            medication and doctors, and a psychiatric
            system that does not necessarily have our
            best interests at heart. (Daniel Fisher)

    Parity in insurance coverage for psychiatric disabilities,
  meaning coverage equivalent to that for physical illness, has
  been promoted on the state and federal level as a major route
   toward improving access to mental health care. According to
  testimony, the most blatant discrimination may be found in the
very health care system that is intended to serve people labeled
  with psychiatric disabilities. A lack of mental health benefit
  parity prevents people labeled with psychiatric disabilities
from seeking and obtaining quality, affordable treatment, delays
   their recovery, and may even exacerbate their disabilities.

             It cost the insurance companies and the
            system a bundle, because my problems, in
              fact, were so multiplied rather than
            diminished by my entrance into the mental
            health system. (Mary Wimberger Auslander)

   While many people labeled with psychiatric disabilities are
  denied even basic treatment options, health care plans cover
  treatments for physical conditions with far fewer restrictions
  and exclusions. Joseph Glazer, president and CEO of the Mental
    Health Association in New York State, testified about the
      difficulties this causes for people seeking treatment.

           It would be unthinkable for our health care
            system to tell a person, "Yes, you need a
          kidney transplant, and there is actually one
          available right now. But we're going to make
          you wait six months, doing painful treatment
           and dialysis every day, even though we know
            that it will be cheaper and more effective
            in the long run to do the transplant now."
          It sounds absurd, but that happens to people
             living with mental illnesses every day.
                         (Joseph Glazer)

   Glazer further testified that the inherent structure of the
existing system, driven by providers and the insurance industry,
     is self-limiting because people cannot pursue their own
    wellness. He testified that barriers to the most effective
  treatments exist. For example, before some insurance companies
  will approve newer, more effective drugs, people labeled with
psychiatric disabilities are required to demonstrate that older,
    side-effect-laden pharmaceuticals are ineffective or cause
                        adverse reactions.

            For a person living with kidney disease,
          complete and thorough treatment is always an
             option. For a person living with mental
          illness, artificial restrictions are imposed
          nearly every step of the way. (Joseph Glazer)

  Disproportionately large copayments and deductibles for people
labeled with psychiatric disabilities pose barriers to voluntary
  treatment. For example, one person with major depression, as
     well as posttraumatic stress and borderline personality
  disorders, testified that she receives mental health benefits
  through her husband's employer. Although she cannot afford to
  stop her therapy or her medication, she reports the financial
  burden may soon leave her no other choice, since her existing
    mental health benefits are limited and her out-of-pocket
      expenses are high. She also cannot obtain affordable
 supplemental mental health insurance to help defray some of the
  cost of treatment. While a plethora of supplemental insurance
    plans exist to cover physical conditions, company policies
offering supplemental insurance for mental conditions are almost
   nonexistent. When supplemental health insurance policies do
cover mental health benefits, the annual limits may be as low as
  $500--much lower than supplemental benefits covering physical
                        health conditions.

          The lack of mental health parity laws add up
            to nothing less than societally sanctioned
                    torture. (Joseph Glazer)

  As a result of the limits imposed by restricted mental health
  benefits, people labeled with psychiatric disabilities cannot
   control their own lives, are denied the opportunity to make
  informed choices about treatment, and are forced into unwanted
                           treatments.

  There is, however, another side to the question of parity, one
  that has seldom been aired in the public policy discussions on
                           this issue.

            Another issue are the so-called insurance
           parity laws, which promote only one kind of
            parity. Parity means equality, and if we
             want to promote equality on the payment
            side, it's got to come hand-in-hand with
              equality on the rights side. So, any
            so-called parity laws are not really equal
            unless they say that the medical treatment
             should be offered on the same basis for
           these diagnoses as anything else, where you
            cannot be forced. A diagnosis of cancer or
          heart disease or anything else doesn't carry
              with it the power to commit and force
             treatment and neither should any mental
          health treatment, and if insurance parity as
            currently written goes into effect, it's
             just going to be a cover for a lot more
               forced treatment. (Judi Chamberlin)

            We believe that healing and recovery are
            possible only in an atmosphere in which we
             control our own lives and make free and
            informed choices about treatment. (Darby
                             Penney)

    The Mental Health Parity Act (MHPA) of 1996 (P.L. 104-204)
     required that, beginning in 1998, limited mental health
  parity--elimination of annual and lifetime dollar limits for
 mental health care--be made available for all U.S. group health
  plans that already offer mental health benefits and serve more
  than 50 employees. However, the law has flaws. The law exempts
      employers with 50 or fewer employees and those who can
 demonstrate an increase of 1 percent or greater in total annual
 health premium costs as a result of mental health parity. Under
  MHPA, the "sunset" provision mandates that the requirements of
  the law will cease to apply to benefits for services furnished
     by an employer on or after September 31, 2001. This law
 overrides the Employment Retirement Income Security Act (ERISA)
exclusions that had exempted from state-level parity legislation
  at least one-third of the population covered by self-insured
                            employers.

 According to testimony, one of New York State's largest managed
 care insurers responded to the parity law by simply eliminating
  dollar caps on mental health services and replacing them with
  annual and lifetime visit caps. A mental health administrator
 testified that this benefit limitation is additionally grievous
  to youths between the ages of 18 and 21, who are most commonly
diagnosed with schizophrenia and many forms of depression during
                    this time of their lives.

           They just did the math and circumvented the
                      law. (Joseph Glazer)

 But because the public policy debate on parity has not involved
people labeled with psychiatric disabilities in meaningful ways,
    the question of forced treatment has not been addressed in
 existing or proposed mental health parity laws. Using the cover
    of mental health parity to pay for treatments that are not
 sought or wanted by their recipients will simply make such laws
 a vehicle to further legitimize and fund involuntary treatment,
  which is incompatible with self-determination principles. In
  addition, mental health parity laws could lead to even greater
    medicalizing of people's problems, because they would fund
  drugs, electroshock, and hospitalization, when what is often
needed are such nonmedical services as improved housing and peer
                            support.

  States that have instituted parity laws are turning to managed
    mental health care to save money. According to Parity in
 Financing Mental Health Services: Managed Care Effects on Cost,
   Access, and Quality, a 1998 report by the National Advisory
  Mental Health Council (NAMHC), implementing parity in systems
already using managed care results in an increase of less than 1
  percent in total health care costs during a one-year period.
    NAMHC also reports that in systems not using managed care,
    introducing parity with managed care results in a 30 to 50
    percent reduction in total mental health costs. The report
 notes, however, that considerable variability has been observed
      in access and other measures of quality across managed
  behavioral health plans, raising concern about the quality and
 outcome of mental health care in some plans. In some instances,
  managed mental health services also have resulted in limited
   mental health access, decreased work performance, increased
  absenteeism, and greater use of medical services. Despite its
    cost-effectiveness, NAMHC reports that only 15 states had
            enacted mental health parity laws in 1998.

   It is important to note that this report, typical of public
      policy discussion in this area, does not even mention
    involuntary treatment, despite the emphasis put on forced
        treatment in much of the testimony heard by NCD.

                The results of a major survey of
          employer-provided health plans was published
            in 1998 by the Hay Group, an independent
            benefits consulting firm. The Hay Report
            showed a major decline in benefits in the
          past decade: Employer-provided mental health
              benefits decreased 54 percent, while
          benefits for general health decreased only 7
           percent. Even before this erosion occurred,
              mental health benefits made up only 6
            percent of total medical benefits paid by
              employers. Today, that has been cut in
          half--it is down to 3 percent. The number of
          plans restricting hospitalization for mental
           disorders increased by 20 percent. (Senator
          Paul Wellstone (D-MN), Congressional Record,
                        April 14, 1999.)

  On June 7, 1999, the U.S. Office of Personnel Management (OPM)
  notified all of its 285 participating health plans that they
   must offer full mental health and substance abuse parity to
    continue to participate. OPM surveys revealed that health
  benefit parity would add minimal cost to existing premiums and
              would increase employee productivity.

 Testimony also pointed to problems faced by people labeled with
    psychiatric disabilities when they return to work and need
    continued insurance coverage. At the time of the hearings,
    people labeled with psychiatric disabilities who received
   Medicaid lost those health benefits if they returned to the
  workforce, but benefits to Medicare recipients continued for
  three years after they returned to work. Medicare recipients
    also have restrictions placed on mental health benefits.
  Inpatient mental health benefits, for example, have a lifetime
    cap of 190 days. Beneficiaries also are responsible for 20
    percent of the inpatient hospital charge, as well as the
    deductible for each stay. Medicare coverage for outpatient
 mental health services is limited to 50 percent of the Medicare
     allowable charge; however, there is no lifetime cap for
  outpatient therapy. Medicaid mental health benefits vary from
                         state to state.

  The President signed into law the work incentives legislation
 that includes provisions that allow people to continue Medicaid
    and Medicare benefits for a period of six years after they
   return to work. An employer who offers health care benefits
should include mental health parity. Unless mental health parity
  legislation for voluntary treatment is enacted nationwide, at
    the end of six years many people labeled with psychiatric
 disabilities will face the same dilemma they face today--a lack
 of coverage for voluntary treatment and a disincentive to work.

  Furthermore, parity alone does not guarantee access to mental
  health care. With limited available health care dollars, many
  providers are turning to managed care organizations (MCOs) to
  provide cost-effective mental health services. Unfortunately,
  this move is often at the expense of, and detrimental to, the
  well-being of people labeled with psychiatric disabilities. As
  an example, an MCO may require "treatment" by a psychiatrist
    when a client needs and wants therapy or consulting by a
           non-psychiatric mental health professional.

  Arthur Springer developed an anxiety disorder secondary to his
  physical disability, but he did not obtain competent treatment
  for his psychiatric disability until six years later, and only
  after numerous agencies denied him or created insurmountable
barriers. He testified that the long process aggravated both his
physical and his mental health conditions, and is concerned that
  it will become more difficult for others to obtain preventive
  services if Medicaid continues to shift to compulsory managed
                              care.

              I have been in two widely publicized
           Medicaid managed care plans since 1991, and
            it is because of that personal experience,
             corroborated over and over again by the
          experiences of many other people that I have
             met, that I am against managed care for
             people with chronic, disabling, or rare
          conditions, until the federal government and
            the health insurance and HMO industry can
            explain to me how managed care is safe and
          effective for me and all others like me. The
              second issue is the deeply disturbing
            doctrine of so-called special needs as a
              rationale for preferential status and
           services in Medicaid managed care for a few
            providers. In New York, the state and HCFA
            propose to create so-called special needs
            plans for people with HIV/AIDS and serious
              and persistent mental illness. No one
             disagrees with the idea that both these
              groups need a variety of services from
           people who are qualified to serve them. The
              issue is the government's refusal to
           guarantee equitable services, proportionate
            to need, for all other Medicaid recipients
             with acute, chronic, disabling, or rare
          conditions that require something other than
            so-called primary care. (Arthur Springer)

           The most eye-opening discrimination is that
          found in the very health care system that is
           intended to serve people living with mental
            illnesses. The inherent structure of our
               system, driven by providers and the
            insurance industry, starts by steering us
           away from nonmedical options for treatment.
           By design, it is self-limiting in the kinds
          of things people can pursue in seeking their
            own wellness. In practice, under managed
              care, it has become even more limited,
            particularly on the mental health side of
              the managed cost ledger. We know that
           restrictions on access to the best and most
            successful medications is practiced, based
              on cost, and that benefits for nondrug
              therapies are greatly limited. (Joseph
                             Glazer)

    The director of the Mental Health Legal Advisors Committee
 (MHLAC), an agency of the Massachusetts Supreme Judicial Court,
 testified that more states are contracting with private MCOs to
    provide Medicaid services because of financial incentives
   inherent in a for-profit, capitated, closed-network system.

           In Massachusetts, services are cut based on
          financial, not clinical, considerations. The
            amount of therapy each individual receives
            has been slashed, and greater reliance has
                been placed on medication services
          (medications are not paid for by the managed
              care company). A 15-minute medication
           session once a month is much less expensive
                than weekly therapy. (Frank Laski)

    Laski further testified that the quality of care is also
    affected since managed care has put financial pressures on
providers, who have cut staffing or employed less educated staff
                  and foregone staff training.

            Hurried interaction and even human rights
           abuses are facilitated by a system with too
          few staff who can take the time to listen to
           a client's needs and respond appropriately.
                          (Frank Laski)

  According to MHLAC, although some providers in closed, managed
 care networks would like to, they cannot directly or indirectly
  criticize the treatment decisions made by MCOs. If providers
    disagree with the treatment decisions imposed by MCOs, few
  appeal because they fear retribution, in the form of cuts in
  referrals or other limitations on services. Providers also are
cautious about recommending too many services for their clients.

             Under a managed care system, it is very
          difficult--very, very difficult--for persons
          with mental illness to look to clinicians or
            others who are caring for them to be their
            advocates for their service needs, because
          they're caught up in the same issues. (Frank
                              Laski)

    Unfortunately, many MCOs are operating with little or no
   oversight. Testimony from Laski illustrated the problems in
    Massachusetts, one of the states that has gone furthest in
 turning Medicaid-funded mental health services over to MCOs. He
  testified that Massachusetts has been unwilling or unable to
  effectively monitor the impact of privately managed care. One
  MCO operating in Massachusetts, for example, received an award
  for keeping seven-day recidivism rates at or below 5 percent.
  MHLAC reports further investigation revealed that recidivism
 rates were not measured by readmissions for the same diagnosis,
    and doctors admitted changing diagnoses to reflect lower
                        recidivism rates.

          In this age of public scrutiny as to how tax
             dollars are spent, it is befuddling how
             little the Commonwealth knows about the
            performance of its Medicare contractors.
                          (Frank Laski)

  Laski referred to an independent study of the privatization of
  Massachusetts Medicaid mental health management performed in
  1993 in Massachusetts that failed to fully address such basic
  issues as access to services. The absence of this information
 precipitated the Massachusetts legislature to require quarterly
  reports from the state's Division of Medical Assistance (DMA).
      However, no consumer satisfaction survey has ever been
    performed. MHLAC also reports that the Commonwealth had to
   increase bonuses because it reduced the amount of money the
            company could retain if it cut services.

            The result is that services continue to be
            cut--no private company would risk loss or
            forego the opportunity to make two million
          dollars--and the Commonwealth awards the MCO
            for performing already promised services.
                          (Frank Laski)

 Glen Liebman, the executive director of New York State National
  Alliance for the Mentally Ill, testified that he consistently
  hears from members of his organization that Medicaid managed
  care plans lack coordination and accountability. His greatest
  fear is that many of these "special needs" plans "cherry-pick"
 by only treating healthier people and dropping people with more
                        severe conditions.

 Ann Mathes testified that fighting for benefits adds additional
      stress to the lives of people labeled with psychiatric
  disabilities. She was surprised when the Medicare carrier for
 Minnesota changed its policy and informed her psychologist that
   services exceeding 20 sessions during 1997 would be denied.
  After much stress and many letters and telephone calls to the
    local Medicare carrier and HCFA, her therapy sessions were
                        finally covered.

   Mary Wimberger Auslander, a psychiatric survivor and mental
    health professional, testified that she was involuntarily
    committed to institutions for seven or eight months over a
  period of nine years. These intermittent hospitalizations only
 lasted as long as her insurance benefits covered them, and were
 both expensive and ineffective. As a result, she testified that
    the months in the institutions cost her at least an entire
                       decade of her life.

           I learned primarily that the last place you
             can go to have a nervous breakdown is a
          psychiatric ward. (Mary Wimberger Auslander)

Auslander also testified that because our society has a complete
    lack of tolerance for difference and staunchly denies the
   effects of poverty, the mental health system has become the
  repository for the victims of these attitudes. She also stated
  that as long as such attitudes prevail and their shortcomings
    and the consequences are ignored, a coercive, destructive,
  discriminatory, and lethal system of mental health care will
continue. She testified that although more humane treatments are
  coming to the fore, the use of electroconvulsive therapy (ECT)
is increasing because it is one of the treatments some insurance
                    companies will reimburse.

   Sharon Frieler, a member of the South Dakota PAIMI advisory
    council, testified about the effect on her cousin of ECT
                            treatment.

            My own cousin in Nebraska underwent many,
             many different treatments of ECT over a
            period of time. And what happens, in many
            cases, you lose parts of your life, your
               memories. And today, after years of
          treatments and being with psychiatrists, she
          is still depressed. She is still looking for
                those lost years. (Sharon Frieler)

 Further, ECT continues to be given against the expressed wishes
                         of individuals.

          The Center for Mental Health Services of the
              Federal Government did a review on the
              subject of electroshock human rights
            violations. It acknowledges that there are
            instances of illegal, forced electroshock
          against the expressed wishes of the subject.
           And we feel that's a real litmus test about
            empowerment. If the Federal Government is
            for empowerment of people with psychiatric
            labels, it will ban forced electroshock.
                          (David Oaks)

 One method of increasing self-determination in psychiatric care
  is the use of advance directives (sometimes known as "living
  wills"). Through an advance directive, people can specify in
  advance what kinds of care they want, or don't want, at some
   future time in which they may be deemed incompetent to make
  treatment decisions. While originally envisioned as applying
   primarily to end-of-life care, advance directives also have
  applicability to people labeled with psychiatric disabilities,
who are usually legally competent but who may experience periods
  when they are considered not to be. Xenia Williams, a mental
  health advocate from Vermont, testified concerning the use of
  advance directives for psychiatric care and the problems that
she had experienced in attempting to implement the provisions of
    an advance directive in which she was named the substitute
                         decision maker.

            Since 1995, I have been an agent under a
          durable power of attorney for health care in
            the state of Vermont for [my friend]. She
            has not had her durable power of attorney
            honored by Vermont State Hospital or the
              Brattleborough Retreat, both of which
           receive federal monies. This is contrary to
            the Vermont statute for durable powers of
            attorney for health care and the federal
            Patients' Self-Determination Act, and it's
            discriminatory under ADA. People labeled
            with psychiatric disabilities should have
          their advance directives respected, the same
            as people who have lost capacity to make
          their own health care decisions because they
            were in a car crash and are in a coma. If
          you execute an advance directive, you should
            have the same rights to have it honored if
              your loss of capacity to make your own
            decisions is due to psychiatric situations
              as well as for other reasons of losing
           capacity. I'm a co-plaintiff with my friend
          in a lawsuit against Vermont State Hospital,
            to try to get enforcement of her advance
              directive. She has been discriminated
          against in being barred from having visitors
            at times. I have not been consulted about
            her care. They won't consult me; they just
            throw her back in the hospital, and then
            they feed her all kinds of drugs that are
            not good for her. They won't respect her
           wishes about which drugs she wants to take,
             and when, and other things that greatly
            affect her care. So, she's not getting her
            rights respected there. (Xenia Williams)

Advance directives cannot necessarily prevent the administration
 of treatments people may choose not to have. A person may write
      an advance directive explicitly rejecting any form of
psychiatric treatment, yet in every state such an individual can
                still be involuntarily committed.

  People labeled with psychiatric disabilities often have other
    health problems that, when ignored, can lead to permanent
    disability and even death. William Brooks, the supervising
 attorney of the Mental Disability Law Clinic at Toro Law Center
  on Long Island, testified about an elderly woman who was left
unattended in the bathroom of a state institution. When she fell
  off the toilet, the attendants did not believe that she was in
pain, hoisted her up, and put her back into bed. After crying in
    pain all night, she was finally moved to a general medical
  hospital where an X ray revealed a broken hip. Since then, she
                  has lost her ability to walk.

Anna Clege, a licensed practical nurse with 18 years of surgical
experience and a native of Haiti, did not survive her stay in an
    institution. For Clege, language posed one barrier to her
  treatment. But a more dangerous barrier resulted in her death:
  Medical personnel ignored her physical symptoms. According to
  testimony from her sister, no one could communicate with Clege
    because no one on staff spoke her native language. On the
 morning following her admission, after staff heard a loud crash
  coming from her room, they found Clege on the floor. Although
   she was nonresponsive, lacked a radial pulse, and her blood
  pressure was inaudible, staff took no emergency measures. In
 fact, it was not until almost one hour after she collapsed that
  an EKG was administered and revealed that Clege had suffered a
    heart attack. Then, one hour and 10 minutes after she had
     collapsed, Clege was finally moved to medical emergency
            services, where she died 27 minutes later.

             In her community, in addition to giving
            professional services, she always showed
          great generosity and hospitality to the ones
          in need. Our beloved sister was always there
              for all of us in our family. Her death
          created a tremendous hole in our family that
                leaves us with a lot of anger and
                    frustration. (Marie Clege)

                  Public Policy Recommendations

Congress should enact legislation that provides health insurance
  parity for voluntary mental health services for people labeled
 with psychiatric disabilities to the same extent that voluntary
  physical health treatment is provided. Involuntary treatment
  should not be covered in insurance parity legislation, since
    insurance coverage for physical health conditions does not
      mandate involuntary treatment. Legislation also should
              incorporate the following provisions:

  * Prohibit limits on the number of covered hospital days and
                        outpatient visits.

  * Eliminate copayments, coinsurance, and deductibles that are
   inconsistent with physical health portions of all policies.

  * Eliminate provisions in Employee Retirement Income Security
    Act of 1974 that protect managed care organizations from
                            liability.

    * Amend the Mental Health Parity Act of 1996 to eliminate
    coverage for involuntary care and to eliminate the sunset
                            provision.

    * Eliminate the 50-employee threshold in the Mental Health
                       Parity Act of 1996.

    * Establish time limits for processing appeals of denied
                             claims.

    * Prohibit all forms of capitation and risk-sharing that
      induce managed care organizations and providers to cut
                            services.

    * Prohibit discrimination in supplemental health insurance
                            policies.

Institute closer oversight and monitoring of MCOs, Medicare, and
                            Medicaid.

  Congress should pursue legislative initiatives and regulatory
      changes that provide closer monitoring of MCOs. These
    initiatives should include uniform methods for maintaining
expenditure data so that managed care company performance can be
compared over time and between companies. Expenditures and other
      critical data should be made available to the public.

  Congress should initiate independent evaluations of privately
    managed care that analyze the number of persons using each
service and the amount of services each person receives--as well
    as analysis of administrative versus service expenditures,
          expenditure trends, and consumer satisfaction.

  Congress should fund research to monitor the impact of MCOs in
  Medicare and Medicaid mental health plans and the relationship
  between public and private mental health systems under diverse
                        types of funding.

 HCFA should exercise greater oversight and stricter enforcement
        of existing regulations to ensure coordination and
  accountability by its Medicare and Medicaid providers, as well
 as equity in the Medicaid program by eliminating discriminatory
      "special needs" plans that penalize people with severe
              disabilities and chronic conditions.

            Proactive protection of patients' rights.

  Congress should conduct public hearings on the experiences of
    people labeled with psychiatric disabilities with existing
                           treatments.

  Congress should enact a comprehensive patients' bill of rights
      that protects patients in all areas of health care but
 especially addresses the specific issues of people labeled with
                    psychiatric disabilities.

   Congress should mandate that, prior to receiving treatment,
patients' advance directives are adhered to and informed consent
 forms clearly state due process rights in understandable terms.

      Congress also should mandate that people labeled with
      psychiatric disabilities receive complete and current
information concerning their diagnosis, treatment, and prognosis
 in terms that they can understand, and that these documents are
  signed without coercion prior to receiving any treatment for a
   psychiatric condition at any facility that receives federal
                              funds.

 Congress also should establish a mandatory reporting system for
 this process and impose stiff penalties on facilities that fail
                to comply with these provisions.

  Congress should further mandate that services be provided in a
 culturally competent manner that respects the ethnic and racial
  backgrounds of people labeled with psychiatric disabilities.

    Considering the number of people labeled with psychiatric
      disabilities, current research funding for psychiatric
  conditions is inadequate. Significantly more federal research
dollars are spent on health conditions that affect fewer people,
  due in part to powerful lobbying groups that exert significant
     influence over how federal research money is allocated.

     Congress should allocate funding for research into safe
    alternative treatments for people labeled with psychiatric
  disabilities and ensure that people labeled with psychiatric
  disabilities are included in any review boards or policymaking
              decisions that result from research.

  Congress also should fund a nationwide study on the status of
               mental health in the United States.

With the relaxing of FDA approval for new drugs, many drugs have
    received approval and have later been recalled by the FDA
 because of adverse reactions. In addition, much of today's drug
testing is performed on adult male research subjects; therefore,
 it is difficult to determine the effects of such drugs on women
and children. Drug testing standards should be revised to ensure
    that new drugs on the market are safe for use by women and
                children, minorities, and others.

DOJ should enforce existing provisions of ADA to remove barriers
  that prevent people labeled with psychiatric disabilities from
  communicating with their physicians, therapists, and service
                            providers.

 Congress should amend Medicaid and Medicare laws to ensure that
  health care professionals can communicate in a language that
                    their clients understand.

 Emergency medical training should be required for all staff who
    have direct contact with people labeled with psychiatric
disabilities in institutions, residential treatment centers, and
             group homes that receive federal funds.

  Medical and psychiatric personnel should receive training in
  addressing both physical and psychiatric conditions in people
                        with disabilities.

The lack of culturally competent mental health services was also
 addressed by Sharon Frieler, a member of the South Dakota PAIMI
                        advisory council.

          The reality is not having readily available,
           culturally sensitive mental health services
              for the Native American, the largest
           minority group in our state. The reality is
            stigma that is exceptionally difficult to
           deal with, in an environment where the leas
            t bit of attention drawn to yourself, or
            forced up, let alone being associated with
            particular programs, will single you out,
            and say, "You are crazy." So, please don't
            lose the sense of these shared experiences
          you've heard here today. Deliberate on them.
           Think before you make your recommendations.
                        (Sharon Frieler)


                            Chapter 4

                        Criminal Justice

      Neither law enforcement agencies nor the judicial and
   correctional systems have programs and policies in place to
 address the particular needs of people labeled with psychiatric
  disabilities while at the same time ensuring that they receive
  equal justice under law. When they are the victims of crime,
     testimony revealed that people labeled with psychiatric
 disabilities cannot rely on law enforcement agencies to protect
  them. The judicial system also fails them. Studies have found
 that rates of incarceration for people labeled with psychiatric
    disabilities are almost double the comparable rates in the
    general population. While it is often assumed that people
labeled with psychiatric disabilities are in prison because they
  are particularly violent and dangerous, in fact, large numbers
  of prisoners with psychiatric disabilities are in prison for
    crimes that would not normally result in incarceration for
 nondisabled people. Inmates with psychiatric disabilities serve
  longer sentences than other prisoners and are less likely to
receive voluntary treatment for their disabilities. Treatment in
    penal settings almost always consists of drugs, most often
  without any meaningful informed consent. In fact, imprisonment
   may actually exacerbate the symptoms of people labeled with
                    psychiatric disabilities.

            Law enforcement personnel often presume us
           to be without credibility in our complaints
             but assume us dangerous when complained
            against. Either way, our lives are held at
                very little worth. (Laura Ziegler)

      The Police Executive Research Forum (PERF), a national
    organization composed of chief executives from municipal,
  county, and state law enforcement agencies, offers a training
  curriculum and model policy that addresses police response to
  people labeled with psychiatric disabilities. PERF's trainer's
    guide, Police Response to People with Mental Illness, also
 covers the ADA and community policing approaches, including the
  voluntary and involuntary commitment process, arresting, and
 interviewing people with mental illness. However, as is typical
   of such training procedures, these materials were developed
without input from people labeled with psychiatric disabilities.
   The training guide notes, "It is not the role of the police
    officer to make the determination that a person should be
   committed." Testimony revealed, however, that police do not
                  always adhere to this policy.

           One woman described being locked out by her
            landlord. When she called the police, he
            told them, "It's just some nut who didn't
              pay her rent." And they took her to a
                psychiatric ward. (Laura Ziegler)

When a person with a psychiatric disability is a victim of crime
    or has witnessed a crime, police should provide the same
       services they provide to all victims and witnesses.
  Unfortunately, this is not the case, according to Ziegler, a
  person with a psychiatric disability who has worked as a legal
advocate in several states. She testified that the management of
   a building where she lived routinely broke into and entered
  apartments of tenants, many of whom had psychiatric histories.
  When she complained at the local precinct, she testified that
  the police clearly did not consider this an issue, since the
   perpetrator was a mental health agency and the victims were
people labeled with psychiatric disabilities, who were not to be
believed. When she consulted a legal agency, she was told it was
    a "gray area." She says the law is clear, but invoking the
disability of the victims somehow made it gray. As a result, she
 says, people labeled with psychiatric disabilities who lived on
  this New York City block, which served as a crack and heroin
    supermarket and where occasional gunfire could be heard at
night, could not expect the ordinary level of control and safety
                  that comes with a locked door.

   The PERF training model confirms that police are frequently
   unclear about the rights of people labeled with psychiatric
                          disabilities:

            Frequently, officers believe that only two
              dispositions are available: arrest or
            involuntary emergency evaluation. Although
           these are two formal dispositions, a number
          of informal dispositions also exist. (Police
             Response to People with Mental Illness)

  Ziegler recalled another incident in which one of her clients,
  who lived in an apartment run by a mental health agency, was
  attacked by a man who had threatened to kill her (the client)
  with a knife. He was not charged with any crime, an example of
 how people labeled with psychiatric disabilities are frequently
 victimized both by criminals and by the criminal justice system
    that is supposed to protect them. When this same client,
 however, objected to the policy of the building's management of
  entering her apartment without her permission and stated that
    someone would get "knocked on their ass" the next time it
 happened, a staff person arranged for her to be psychiatrically
              committed because she was "violent."

   Ziegler also testified about a family who called the police
 because they thought their son was having a psychiatric crisis.

             When the police came, he was hit with a
            Tazer gun by an officer. What was he doing
            that invoked this response? He was crying.
                         (Laura Ziegler)

 Betsy Pansa testified that when she called police to report her
keys stolen, the policeman refused to take a report and made fun
of her. When she asked him to leave her home, she was handcuffed
 and transported in the police car for a psychiatric evaluation.

  Luz Marquez, associate director for outreach at the New York
  State Coalition Against Sexual Assault, testified that victims
 with disabilities are subject to unfair reporting requirements.

           There is a New York state law that requires
            people who have cognitive disabilities to
              have a third person witness the actual
                      assault. (Luz Marquez)

Ziegler graphically depicted the vulnerability of people labeled
          with psychiatric disabilities in institutions.

           When I was an advocate with the Long Island
            Protection and Advocacy Office, a client
            institutionalized at a state psychiatric
          center quoted a staff person as telling her,
            "You can't dial 911 in here." What would
           have happened if she had? The county police
           told me a staff person's verification would
              be required if a complaint came from a
            psychiatric ward. They did not explain how
            this would work if the alleged perpetrator
           was a staff person. On another occasion, at
                a conference on sexual assault and
            retraumatization, I questioned a panelist
          from the Queens D.A.'s office as to how they
           responded to complaints of a sexual assault
            emanating from DD or psychiatric centers.
             She replied that she couldn't answer my
               question because they didn't have a
             psychiatrist on the panel. This kind of
            discriminatory law enforcement effectively
             denies basic security to people who are
           extremely vulnerable to crimes of violence,
                including violence that is called
                  "treatment." (Laura Ziegler)

 Roy Neville, the president of the Alliance for the Mentally Ill
  of Schenectady, testified that jails and prison, rather than
 hospitals, are the new institutions for caring for mentally ill
                            persons.

          Bail is available to mentally ill defendants
              less often than other defendants. More
          mentally ill defendants spend longer in jail
          detention than other prisoners. Mentally ill
            prisoners spend a larger portion of their
           sentence in prison than other prisoners, on
            average. They are more often denied parole
                  than the others. (Roy Neville)

 The Center for Mental Health Services (CMHS) reports "the sheer
 magnitude of people with serious psychiatric disorders in jails
is staggering." In July 1998, the Department of Justice's Bureau
  of Justice Statistics (BJS) reported that an estimated 284,800
    mentally ill offenders were held in the nation's state and
  federal prisons and local jails in mid-1998. Another 547,800
     mentally ill people were on probation in the community.

  CMHS reports that on an average day, 9 percent of men and 18.5
 percent of women entering local jails have a history of serious
mental illness--rates two to three times higher than the general
   population. An estimated 700,000 new admissions annually to
   jails are individuals with acute and severe mental illness,
    compared with 731,510 people who are admitted annually to
                inpatient psychiatric facilities.

            The local jail persistently remains one of
           the community settings where people labeled
              with psychiatric disabilities reside,
           however briefly, during the course of their
            long illness. Most often, these are people
          whose only crimes are minor offenses--public
            nuisances associated with homelessness (in
           Los Angeles, over 70 percent of people with
              mental illness have been arrested), or
              confusion, often mistaken for public
           drunkenness. (Mental Health, United States,
                           1998, CMHS)

CMHS estimates the prevalence of serious mental illness (SMI) to
  be as high as 57 percent among the 1.1 million adult residents
  of correctional institutions. In some communities, arrests may
  constitute "mercy bookings" to remove people from the streets
because the mental health services they need are inaccessible or
  unavailable because of scarce resources. Whether the people so
      arrested consider it an act of mercy is questionable.

  BJS's Mental Health and Treatment of Inmates and Probationers
 reports that, on average, inmates with psychiatric disabilities
 were expected to serve 103 months in state prisons before their
          release--15 months longer than other inmates.

  The trauma of incarceration, regardless of the length of time,
    may exacerbate their symptoms and put people labeled with
 psychiatric disabilities at risk for suicide. Between 75 and 95
percent of people who commit suicide in jails or in prisons have
a mental disability, according to information provided in Mental
                  Health, United States, 1998.

            In criminal courts, mentally ill persons
           don't receive fair treatment in this era of
           "let's get tough on crime." They receive an
               uneven defense in court from public
             defenders who may not understand mental
            illness...and are too overworked to deal
            with each case sufficiently. Plea bargains
            and trials result in jail and prison terms
            more severe on the average than for other
                    defendants. (Roy Neville)

  In correctional facilities, services differ from locality to
 locality. In 1997, for example, the Cook County, Illinois, jail
 provided services to only 37 percent of men and 23.5 percent of
     women who needed them. Such services usually consist of
  administration of psychiatric drugs rather than counseling or
                            therapy.

  Cliff Zucker, the executive director of Disability Advocates,
  Inc., an Albany, New York, P&A organization, cited the example
  of a prisoner who went for days without treatment because his
  medical records did not accompany him when he was transferred
      from one correctional facility to another. It took the
      intervention of the P&A before the inmate received his
 medication. In the past, prisoners with mental illness received
  help from prisoners' legal services, but federal funding was
                  eliminated for this program.

The problems in the criminal justice system need to be addressed
 systematically in ways that include the views of people labeled
  with psychiatric disabilities and their advocates. Excluding
  these viewpoints will perpetuate many of the mistakes of the
                              past.

                  Public Policy Recommendations

  Institute mandatory training for all personnel who work in law
enforcement; the judicial, penal, parole, and probation systems;
  and victim assistance programs on the requirements of ADA and
  other laws that protect the civil and human rights of people
              labeled with psychiatric disabilities.

  Mandatory training should be required for all law enforcement,
  criminal justice, and correctional personnel, including prison
   guards and probation officers, as well as people working in
 victim assistance programs. Training should be coordinated with
  PERF, DOJ's Office of Victims of Crime, and the National GAINS
                             Center.

  The latter, established in September 1995, provides technical
    assistance to states, localities, and criminal justice and
 provider organizations that are in the process of developing or
  implementing services to people with co-occurring psychiatric
 disabilities and substance abuse disorders at all stages of the
 justice system--law enforcement, jails, prisons, probation, and
                             parole.

  DOJ should ensure that these organizations remove all physical
and attitudinal barriers and that the programs are accessible to
          people labeled with psychiatric disabilities.

 People labeled with psychiatric disabilities should be included
   in all policy and program development, decision making, and
    service delivery from the time of the crime through case
                     disposition and beyond.

In addition, people labeled with psychiatric disabilities should
  be recruited and trained to become volunteers and paid staff
members in criminal justice programs, especially in system-based
              or private victim assistance programs.

 Increase involvement in protecting the rights of people labeled
  with psychiatric disabilities who are defendants in courts and
         inmates of state and local corrections systems.

    People labeled with psychiatric disabilities should be an
  integral part of all policymaking that addresses prevention of
  crimes by people labeled with psychiatric disabilities and how
              to best meet the needs of offenders.


                            Chapter 5

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

  While only a few witnesses addressed the question of children
  with psychiatric disabilities, it is clear from testimony that
   many of the same problems affecting the adult mental health
 system carry over into the children's system as well. Witnesses
    testified to a lack of parental involvement in treatment
     decisions; the requirement that, in many cases, parents
  relinquish custody to the state in order to obtain services;
    poor interface between the educational and mental health
systems; problems with obtaining and retaining SSI benefits; and
                  a host of other difficulties.

The National Institute of Mental Health (NIMH) reports that 1 in
10 children and adolescents have an emotional disturbance severe
  enough to cause some level of impairment. In 1996, suicide was
 the third leading cause of death among 15- to 24-year-olds, and
  the fourth leading cause of death in 10- to 14-year-olds. (It
 should be noted that "severe emotional disturbance" is the term
  used by the Federal Government for those under 18; people over
              18 are designated as "mentally ill.")

The number of children receiving services in private residential
  treatment facilities more than doubled between 1969 and 1994.
 Children with psychiatric disabilities are more likely than all
other children with disabilities to receive educational services
  in residential settings or separate classrooms. They fail more
   courses, earn lower grade point averages, miss more days of
 school, and are retained at grade more than students with other
disabilities. Fifty-five percent leave school before graduating.

    Because eligibility for Medicaid and other public health
    programs differs from state to state, many children with
psychiatric disabilities never receive appropriate treatment. In
     response, some parents even relinquish custody of their
  children, hoping that as wards of the state, they will receive
  better services and treatment. But frequently, treatment for
        these children--and all children with psychiatric
    disabilities--is provided in state and privately operated
  institutions, or even juvenile correctional facilities, where
they may endure pain, abuse, and torture. The recent emphasis on
 sending juvenile offenders to "boot camp" programs has resulted
    in several underpublicized deaths in the past year alone.

  BJS reports that offenders with severe emotional disorders who
were incarcerated or on probation reported higher rates of prior
  physical and sexual abuse and higher rates of alcohol and drug
  abuse by a parent or guardian while they were growing up. More
  than 40 percent of inmates with psychiatric disabilities said
their parents had abused alcohol or drugs. More than half said a
   parent, brother, or sister had also been in prison or jail.

    At school and in their communities, children with severe
emotional disturbance suffer the anguish and pain that come with
the stigma of living with a psychiatric disability. For a child,
                this can be especially damaging.

  Families of children with severe emotional disturbances often
 lack the financial resources to provide adequate treatment, and
for parents with their own psychiatric disabilities, this can be
    even more difficult. Susan Mikolik testified that she, her
       husband, and two of their children have psychiatric
  disabilities. Both she and her husband are professionals who
            work full-time. However, Mikolik states:

           The impact that this overwhelming volume of
               afflictions creates on our family's
           functioning is devastating. The two primary
           areas that create additional burdens for us
           to deal with are financial/insurance issues
                and school issues. (Susan Mikolik)

    Mikolik also testified that although her son is medically
    qualified, he has been denied SSI benefits because of the
  family's income, since the formula for calculating assets does
  not include expenses, which can at times amount to $500 a week
            for psychiatric treatment for her family.

      Carol Wilson of Family Voices, a national grassroots
   organization that speaks on behalf of children with special
    health care needs, and the parent of a child with severe
   emotional disturbances, testified that children with severe
  emotional disturbances were unfairly singled out when stricter
eligibility criteria were required for SSI benefits for children
                        with disabilities.

            Children receiving SSI and Medicaid were
           cut, and all benefits ceased, and the large
           portion of those were children with serious
           emotional disturbances, because there's not
              a test you can run at a local hospital
            that's going to show you what this child
                       has. (Carol Wilson)

 The Personal Responsibility and Work Opportunity Reconciliation
    Act of 1996, commonly referred to as Welfare Reform, made
  eligibility for childhood SSI more restrictive. After the law
    was enacted, SSA reviewed the existing eligibility of some
    288,000 children against the new standards. In response to
  numerous complaints that children would be hurt by these cuts,
  SSA reduced the number of cases it would review and agreed to
                  reevaluate the entire process.

  SSA estimates that approximately 100,000 children eventually
  will lose SSI benefits as a result of Welfare Reform. Although
many children lost SSI, the Balanced Budget Act of 1997 included
  a provision that ensured that those children would continue to
                  remain eligible for Medicaid.

            The issues that you've heard today about
               managed care taking over, insurance
              discrimination [is] a big part of it.
          Managed care [is] taking over. Medicaid is a
              concern because managed care does not
          understand the early and periodic screening,
          diagnosis, and treatment portion, which is a
            mandatory Medicaid provision for children,
           and that these services must be provided if
           they're medically necessary. (Carol Wilson)

    Wilson contends that MCOs do not understand how Medicaid
 provisions apply to children with psychiatric disabilities. The
 result is a very fragmented delivery of treatment, and children
  with psychiatric disabilities frequently do not receive what
                            they need.

  Wilson testified, and studies confirm, that, overall, children
have lost insurance at a much higher rate than adults. To offset
  this, the Balanced Budget Act of 1997 also created the State
  Children's Health Insurance Program (SCHIP) under Title XXI of
 the Social Security Act. SCHIP enables all states, the District
 of Columbia, and five territories to initiate and expand health
 insurance coverage for uninsured children. In FY 1998, Congress
            allocated $4.275 billion for the program.

             Unfortunately, not one single state has
            implemented mental health parity in their
            state children's health insurance program.
           And that's a concern. What happens? What is
            the result? Families such as mine are told
           to give up custody of their children to the
            states in order to receive mental health
           treatments and services, and those services
            usually aren't provided. The children are
            put in foster care; they fall through the
            cracks. The other option presented is to
          declare your child an ungovernable child and
              have them put in the juvenile justice
                      system. (Carol Wilson)

 According to the GAO, as of April 1, 1999, HCFA had approved 51
  state plans for SCHIP; 2 were under review; and 3 had not been
    submitted. Some 982,000 children were enrolled in the new
    program. Under SCHIP, a state has the choice of expanding
  Medicaid; establishing a separate stand-alone program that can
  include cost-sharing and allows the state to adopt a benefit
 package that meets one of several employer-based benchmarks; or
combining these two approaches. To date, most states have chosen
                to expand their Medicaid programs.

 For its report, GAO sampled 15 states. In eight states with the
 SCHIP stand-alone component, mental health, prescription drugs,
   vision, hearing, and dental coverage were optional benefits
that, with the exception of prescription drugs, placed limits on
  the duration of treatment allowed or on the amount of services
 covered. In those eight states, optional mental health benefits
  place limits on the number of days for inpatient treatment and
                the number of outpatient visits.

            For the majority of children, such benefit
             limitations are not likely to result in
          inadequate diagnosis and treatment. Children
          with special needs, however, may not receive
              the full range of services that their
          conditions might warrant. (Children's Health
             Insurance Program: State Implementation
             Approaches Are Evolving, GAO May 1999.)

  Susan Mikolik testified that school issues for families with
  young children with psychiatric disabilities "are tremendous."
  She asserted that children with severe emotional disturbance
  (SED) and those with severe behavior handicaps (SBH) are being
  placed in combined classes to save money. Mikolik acknowledges
that some children may carry dual diagnoses, but she believes it
  is inappropriate to place a SED child--with little or no SBH
   tendencies--into an SBH class. She states that all children
falling into this category are not receiving a free, appropriate
              public education as required by law.

    The 20th Annual Report to Congress submitted by the U.S.
    Department of Education in 1998 reports that some 447,426
  children with emotional disturbances ages six and older were
  served under the Individuals with Disabilities Education Act
(IDEA) during the 1996-97 school year. Over the past five years,
 the overall number of children served under IDEA has increased,
 but the number of certified special education teachers has not.
   Convincing evidence now exists that there is a substantial,
 chronic national shortage of special education teachers who are
               fully certified in their positions.

   The IDEA Amendments of 1997 strengthened IDEA to include an
    appropriate evaluation, development of an individualized
    education program (IEP), education provided in the least
 restrictive environment (LRE), parent and student participation
  in decision making, and procedural safeguards to protect the
rights of parents and their child with a disability. The law now
 specifically requires that a free, appropriate public education
  also must be made available to children who are suspended or
                            expelled.

  According to The 20th Annual Report, the majority of students
  with emotional disturbances, however, continue to be served in
 separate classes from other students. Even when they are placed
    in regular classes, research suggests that many of these
    students and their teachers do not currently receive the
               supports that they need to succeed.

   Testimony revealed that their issues are generally ignored,
because children with psychiatric disabilities are dealt with as
    discipline problems. When treatment and services are not
      available, some parents are left with no choice but to
        relinquish custody of their children to the state.

 In 1994, SAMHSA reports that 26,493 children received treatment
  at residential centers for emotionally disturbed children--a
    number that more than doubled since 1969, when only 13,489
children were treated in such facilities. In fact, Department of
 Education data, based on a December 1, 1995, survey and updated
  on September 1, 1997, indicated that children with emotional
  disturbances were almost twice as likely to receive services
 under IDEA in public or private residential facilities than any
            other group of children with disabilities.

  Once institutionalized, children with psychiatric disabilities
 are subjected to the same abuses as their adult peers. Isolated
   in institutions, children are unwilling or unable to report
abuse, and in some instances the staff may cover up incidents as
                      previously reported.

  If children don't receive treatment in residential facilities,
    they may end up in jail. As many as 14,904 received IDEA
  services in correctional facilities during the 1995-96 school
    year. Wilson asserts that approximately 60 percent of the
  children in the juvenile justice system have serious emotional
    disturbances but do not receive adequate treatment. Some
 children who enter a juvenile correctional facility never leave
        alive, as has happened in some boot camp programs.

     According to a report in the May 21, 1999, issue of The
  Washington Post, 16-year-old Wallace Wesley Dandridge, who was
 described in the article as "an emotionally turbulent, mentally
    retarded youth," was found in respiratory distress, lying
 face-down on a steel bunk in his cell at the Oak Ridge Juvenile
  Correctional Center in suburban Richmond, Virginia. His hands
   were in standard-issue leather restraints and his pulse was
nearly gone when a state trooper arrived to charge the young man
      with assaulting an officer at the juvenile facility.
 Unfortunately, an emergency tracheotomy that failed to save his
  life also may have destroyed any evidence that he was possibly
                      choked or strangled.

    On a happier note, Carol Wilson's son obtained employment
    through vocational rehabilitation and has been out of the
  hospital for 11 months, which is the longest time he has ever
          been able to stay out in the past four years.

          He's happy, he's in the community, and he is
          doing well. But it was a hard-fought battle,
            and 86 percent of the children in my state
            aren't receiving any services. We have to
             look at these children. Putting them in
             juvenile justice is not the answer. And
           parents giving up custody of their children
            is not an answer. It's a violation of my
            civil rights that I have to give my child
            away because he has a disability. (Carol
                             Wilson)

                  Public Policy Recommendations

Many children are given drugs that have serious and long-lasting
 damaging side effects, including other types of mental illness.
 Safer treatments must be developed. Particular attention should
   be paid to dramatic increases in the past five years in the
  number of children given Ritalin and other stimulant drugs for
                        "hyperactivity."

Ensure that SSA's clinical study directed at evaluating the most
    effective approach for assessing functioning in some SSI
 children applicants addresses the unique needs of children with
  severe emotional disturbances. SSA benefit eligibility rules
should be amended to include all extenuating financial and other
 circumstances that may have an impact on a determination of SSI
benefits involving people labeled with psychiatric disabilities.

    HCFA should enforce Medicaid's existing early and periodic
   screening, diagnosis, and treatment provisions. HCFA should
issue a policy statement to state Medicaid officials emphasizing
that Medicaid provisions apply to children with severe emotional
    disturbances, and that denial or failure to provide these
        services will result in loss of Medicaid funding.

      In coordination with the Health Resources and Services
  Administration and other federal agencies, HCFA should closely
   monitor SCHIP to ensure that children with severe emotional
disturbances are receiving services through the program. Federal
  funding should be withheld from states that exclude or limit
                  SCHIP mental health services.

 The hearings should identify barriers to treatment, explore how
  children are used in research, and why so many children with
 severe emotional disturbances are receiving services under IDEA
        in separate classes or in residential facilities.

   The U.S. Department of Education should monitor and enforce
existing provisions of IDEA and ensure that children with severe
emotional disturbances are receiving their education in the most
                appropriate, integrated settings.

 Congress should fund aggressive education and outreach programs
 about the rights of children with severe emotional disturbances
  under IDEA, other laws, and available services and resources.
  Congress should earmark funds for additional fully certified
     special education teachers to eliminate the current and
                       projected shortage.

    Federally funded programs providing treatment and services
    should require parents and/or caretakers to sign informed
    consent forms that clearly state the available treatment,
  potential risks, and alternatives. Stiff penalties should be
  levied against service providers who use coercion or provide
inaccurate information or fail to obtain signed informed consent
                              forms.

Congress should appropriate funding for additional psychologists
 and social workers to work in schools with children with severe
emotional disturbances. Services provided in schools also should
   be expanded to include early intervention and treatment for
children at risk and to provide appropriate services to children
  with severe emotional disturbances and/or substance abuse and
  behavioral problems. This funding could also provide in-school
      peer support groups for children with severe emotional
     disturbances and those recovering from substance abuse.

      Congress should appropriate funding for community- and
     home-based treatment for children with severe emotional
                 disturbances and their parents.

  Multi-systemic therapy (MST), for example, is a mental health
  service that focuses on changing how youth function in their
natural settings--at home, in school, and in their neighborhood.
    It is designed to promote positive social behavior while
    decreasing negative behaviors, including delinquency and
  substance abuse. Therapists work in the home to strengthen the
 ability of parents or caretakers to raise children with complex
  problems. In a series of random trials, NIMH reports that MTS
has proven effective in reducing long-term rates of rearrests by
         serious juvenile offenders by 20 to 70 percent.


                            Chapter 6

            A Zillion Forms and Still No Civil Rights

  People labeled with psychiatric disabilities have little or no
    control over existing federal programs and policies that
   directly affect their lives, because their opinions are not
   valued or are ignored. For example, the June 7, 1999, White
    House Conference on Mental Health was dominated by people
 without psychiatric disabilities, nonconsumer-controlled mental
health organizations, and the pharmaceutical industry. By virtue
      of their exclusion, the voices of people labeled with
psychiatric disabilities were silenced when they should have had
 the most impact, especially when national attention was focused
              on policy that directly affects them.

           I admire my peers who struggle valiantly to
              recover what they have lost, to resume
             normal lives in the face of psychiatric
               labeling. Their very being has been
            invalidated by psychiatric diagnosis. In
           many cases, their physical existence is now
           dependent upon the mental illness industry.
                          (Angela Cerio)

            I believe that the label of mental illness
          is the beginning of human rights violations.
                        (Debbie Whittle)

  George Ebert, an advocate with the Mental Patients Liberation
    Alliance in Syracuse, New York, testified that when he was
  labeled a paranoid schizophrenic, "It gave them the right to
    actually disable me with involuntary confinement--solitary
      confinement, forced drugging, and shock treatments."

 Daniel Fisher, a psychiatrist, testified that some states, such
  as Massachusetts, had to pass legislation to ensure the human
      rights of people in institutions who are labeled with
psychiatric disabilities, such as the right to make a phone call
  or have visitors, legislation that would not be necessary if
 people labeled with psychiatric disabilities did not lose their
  ordinary citizenship rights. It is important to note that both
in institutions and in community facilities, rights are referred
 to as "privileges" that must be earned, generally by compliance
    with treatment. Such so-called "privileges" as using the
  telephone or having access to fresh air must be recognized as
   basic rights that may not be infringed. Just as it would be
  intolerable and unacceptable for people to lose their rights
  when they enter a hospital for medical treatment or surgery,
  such policies should be similarly unacceptable in psychiatric
                           facilities.

  Many of the federal programs available to people labeled with
  psychiatric disabilities work against self-determination and
wellness. All people with disabilities who want to return to the
workforce face barriers--many of them were addressed in Removing
    Barriers to Work, NCD's 1997 report. People labeled with
    psychiatric disabilities, however, encounter some unique
  barriers, and the stigma associated with their disabilities is
 the most egregious. Testimony revealed that many people labeled
    with psychiatric disabilities also are homeless and cannot
access vocational services, and that people who are employed and
        acquire psychiatric disabilities often are refused
  accommodations. Worse, a provision in one federal law allows
  some people labeled with psychiatric disabilities to work for
      little or no compensation, when such work is part of a
                      "therapeutic program."

               Patients are routinely coerced into
              forfeiting their rights in the name of
            treatment, and, in general, the system is
            structured to render consent meaningless.
              The hospital has a canteen overseen by
           therapeutic activity staff that sells light
            meals and beverages. If it was recommended
            that you work there, you could not refuse.
            Refusing to participate in any treatment
              recommendation immediately halted your
            privileges, including passes. We were not
          paid for working at the canteen, although it
            made money. It was considered hostile to
             mention the similarity between this and
              indentured servitude. (Diana Rickard)

  When people labeled with psychiatric disabilities attempt to
    work and apply for employment, they frequently encounter
 discrimination or are offered low-paying positions even if they
 have extensive work histories at responsible jobs. Further, SSA
    regulations limit the number of hours they can work before
              losing benefits and medical coverage.

              The truth is that my success is not a
           miracle but a lot of hard work--harder than
          it needs to be. The work incentives in place
             now rarely produce a person like me. My
            brothers and sisters struggle daily. They
            want to be productive, but they're stuck.
            Why? Because no one knows how to gradually
              get out of the system. (Vicki Smith)

  Bernice Loschen testified about another barrier facing people
labeled with psychiatric disabilities when they seek employment.

              Because when you work, if you have a
            co-pay...you have to pay a co-pay on your
           medicines. You don't make enough to pay for
          your medicines. You don't make enough to pay
            for your medical care. (Bernice Loschen)

    Effective July 1, 1999, people with some disabilities who
    receive SSDI now can earn as much as $700 without losing
benefits. This is the first increase in 10 years. But people who
  are blind can earn as much as $1,100 each month before losing
their benefits. Several people testified that this inequality is
                             unfair.

              Return-to-work and employment programs
            contain disincentives that force persons
            willing to work to remain on entitlement
                    programs. (Sharon Frieler)

People who receive SSI are penalized for anything that they earn
  over $65 in one month. NCD heard numerous calls for reforms of
  SSA and welfare regulations to promote, enhance, and support
            employment for people with disabilities.

Lucy Kim, the administrative coordinator at the Center for Urban
    Community Services in New York, who herself successfully
   transitioned from SSI/SSDI to work, recommended that health
  benefits continue until an individual obtains employment that
  provides full medical coverage, adding that the length of time
  could vary, depending on how long it takes to acquire medical
  benefits. Kim also recommended that employment and vocational
services be conveniently located in shelters and community-based
 programs where other services are provided, noting that she was
  inspired to seek employment by a sign she read in a homeless
shelter. She also testified that day treatment should focus more
    on employment and meaningful activity, and noted the many
      barriers that prevent people labeled with psychiatric
        disabilities from returning to work successfully.

           The internal obstacles are low self-esteem,
          lack of work experience, fear of maintaining
              psychiatric stability while under an
            enormous amount of stress starting a new
            job, and fear of losing benefits. Some of
           the external obstacles are losing Medicaid,
           which enabled me to function. And, I had to
          lie, basically, to keep my Medicaid benefits
          in the transitional period. And also, I feel
              the SSI two-for-one earning scale is a
                    disincentive. (Lucy Kim)

   People who are both homeless and mentally ill face numerous
  barriers in obtaining services that help them obtain permanent
    housing and work. The Task Force on Homelessness described
            barriers to services in its 1992 report:

            People who are severely mentally ill and
          homeless require an extremely broad array of
            resources and services--including housing,
            food, clothing, health and mental health
            care, treatment of alcohol and other drug
              abuse, and psychosocial and vocational
           rehabi litation. Yet in more communities of
                any size, they must negotiate an
          extraordinarily complex and disconnected set
            of bureaucracies to obtain access to these
            services. (Outcasts on Main Street: Report
            of the Federal Task Force on Homelessness
             and Severe Mental Illness, DHHS, 1992.)

      The Task Force recommends that service providers break
 traditional molds of providing services by meeting and engaging
    homeless people on their own terms and on their own turf.

  Despite the many barriers, however, some people persevere and
                            succeed.

           I filled out a zillion forms, and so did my
            boss, and so did my former mental health
              providers, but I'm completely off the
            system, and glad to be. (Xenia Williams)

   Ellen Lawson, a P&A attorney in Buffalo, testified that the
  current body of work incentives and other rules governing how
  employment affects Social Security benefits is so complex that
very few SSA personnel truly understand them. Lawson recommended
rules that are easier for SSA personnel to administer and easily
    understood by recipients and service providers. She also
  suggested that Social Security and SSI rules be made uniform.

           There should be a parallel set of rules for
             both Social Security and SSI. Often, in
          reading through the provisions, I wonder why
            there are such profound differences, and
           that provisions are so much more liberal in
          some cases for SSI, a poverty-based program.
          The rules should apply equally regardless of
           disability, apply equally to applicants and
           recipients, and apply equally regardless of
            what state a person resides in. Uniformity
               would eliminate much of the current
                    complexity. (Ellen Lawson)

  One advocate questioned why only 243 Plans for Achieving Self
  Sufficiency (PASS), a Social Security work incentive program,
were written in the entire country in 1997. A PASS allows people
  with disabilities who are SSI recipients to set aside income
  and/or resources for a specified period of time to achieve a
    work goal. Because writing a plan is so complex, and many
 providers and Social Security workers are unfamiliar with them,
PASS remains an extremely underutilized method of helping people
                         return to work.

Discrimination in hiring against people labeled with psychiatric
  disabilities continues to be a pervasive problem. On June 4,
 1999, President Clinton directed OPM to ensure that the Federal
    Government has the same hiring and promotion standards for
    people labeled with psychiatric disabilities as it has for
  people with other disabilities. Although this directive was a
   step in the right direction, it does not guarantee that the
  numbers of people labeled with psychiatric disabilities in the
 federal workforce will increase. In general, federal employment
    of people with disabilities has never achieved employment
                           objectives.

  Section 501 of the Rehabilitation Act of 1973 (P.L. 93-112, as
  amended by P.L. 99-5061) requires agencies, departments, and
    instrumentalities of the executive branch of the Federal
    Government to submit to the Equal Employment Opportunity
 Commission (EEOC) annual accomplishment reports and affirmative
    action program plan updates for the hiring, placement, and
 advancement of people with disabilities. The Federal Government
  defines targeted disabilities as "deafness, blindness, missing
  extremities, partial paralysis, convulsive disorders, mental
   retardation, mental illness, and distortion of limbs and/or
    spine." In FY 1997, EEOC reports that people with severe
 disabilities represented only 1.16 percent of the total federal
    workforce--a figure far below the estimated 5.95 percent
    availability of people in the United States with targeted
  disabilities who were of workforce age and seeking employment.

Pam Olson, a mental health professional who also has experienced
  recurrent mental illness, testified that she naively expected
ADA to protect her when she became ill. At the time she informed
  her employer about her depression, she had more than 20 years
 experience as a school psychologist and a classroom teacher and
  had always received positive evaluations. Olson testified that
she allowed her employer to contact her therapist, assuming this
  would help her obtain the accommodations she needed. Instead,
 she was subjected to harassment, falsely accused of dishonesty,
  stalking, and intimidating others--none of which occurred. Her
 employer had rated her unsatisfactory in many areas, which were
                actually symptoms of her illness.

  When her internal complaints of discrimination were ignored,
 Olsen filed suit in 1995. The court determined that she was not
 disabled and that she did not qualify for protection under ADA,
    because she was still able to perform her job--despite her
  unsatisfactory rating. The court also determined that ADA did
  not apply, because she could perform other jobs in a number of
other areas. She states ADA provides little to no protection for
  those with psychiatric conditions, and that employers and the
               courts are unfamiliar with the law.

             I believe the courts, at this time, are
                  perpetuating the stigmas and
            misunderstandings of mental illness rather
            than combating them. The burden of proof
           that must be met to prove mental disability
           under ADA sets an impossible standard. (Pam
                              Olson)

  There is also a continuing problem of people who are forced to
   work with little or no compensation. In all 50 states, many
 institutions use patient workers to perform tasks for no salary
  or at a salary below the minimum wage. Sheltered workshops in
  the community also routinely pay less than minimum wage. The
  Fair Labor Standards Act (FLSA) simply requires an employer to
obtain a subminimum wage certificate from the regional office of
 the U.S. Department of Labor (DOL) Wage and Hour Division. Data
 obtained from DOL on June 21, 1999, reveal that some 511 public
  and private institutions obtained certificates to use 27,395
  people as patient workers--a marked increase since 1996, when
only 374 institutions used 14,482 patient workers. This increase
  may be attributed to the fact that institutions no longer are
  required to report the total number of hours worked by patient
workers, or financial information such as wages. As a result, it
        is difficult for DOL to monitor FLSA violations.

 Sheltered workshops, transitional employment programs, programs
that use job coaches, and similar programs commonly treat people
  labeled with psychiatric disabilities differently from other
    workers, particularly in the area of wages. Real work, in
     integrated settings with the same wages and benefits as
nondisabled workers, remains tantalizingly out of reach for many
            participants in "work readiness" programs.

  Perhaps the most egregious violations against people labeled
with psychiatric disabilities occur in the area of civil rights.
  Despite the provisions of ADA and other civil rights laws and
    the protections afforded under the due process and equal
  protection clauses of the U.S. Constitution, people testifying
  describe incident after incident in which the civil rights of
  people labeled with psychiatric disabilities were repeatedly
                    violated or disregarded.

            Right now, in this country and virtually
            every country in the world...by virtue of
            our diagnosis, by virtue of our label, we
          don't have the same rights that other people
              have. We can be put into institutions
            because a doctor says we need to be there.
                There's usually some sort of court
            procedure, but it's not real due process.
              And until that changes, we're going to
           continue to be second-class citizens. (Judi
                           Chamberlin)

Several laws address various aspects of civil rights protections
     for people labeled with psychiatric disabilities. CRIPA
  authorizes the U.S. Attorney General to investigate conditions
  of confinement at state and local government institutions such
     as prisons, jails, pretrial detention centers, juvenile
correctional facilities, and publicly operated nursing homes, as
      well as institutions for people with psychiatric and
 developmental disabilities. This law covers systemic conditions
    that could seriously jeopardize the health and safety of
residents in institutions. Isolated incidents of abuse cannot be
                    investigated under CRIPA.

The Developmental Disabilities Assistance and Bill of Rights Act
    of 1975 (the DD Act) and the Protection and Advocacy for
  Mentally Ill Individuals Act of 1986 (PAIMI) were enacted to
  protect the human and civil rights of people with disabilities
 in institutions. The DD Act and PAIMI provide a congressionally
mandated nationwide network of protection and advocacy services.
  In 1994, Congress provided full funding for the Protection and
    Advocacy for Individual Rights (PAIR) program, which was
  established in 1978 but never funded under the Rehabilitation
  Act. The PAIR program provides P&A services to all people with
  disabilities who are not in institutions. However, many PAIMI
  programs have not aggressively pursued their original mandate.
    One such program, for example, claimed to have "served" 66
  persons in a six-month period (the mere providing of a program
  brochure being counted as providing a service). The level of
  activism of P&A programs continues to vary dramatically among
                           the states.

  Unlike other Americans, many people labeled with psychiatric
 disabilities are denied their civil rights because federal laws
 fail to protect them. Involuntary commitment to a mental health
  facility can be ordered by a court, a physician, or a legally
 authorized mental health practitioner, depending on local laws,
  which vary from jurisdiction to jurisdiction. Police are often
      called upon to pick up people labeled with psychiatric
  disabilities for involuntary commitment. This is seen by many
   people labeled with psychiatric disabilities as a denial of
                 their basic citizenship rights.

           I knew she and I did not live in the United
              States, and we're not citizens of that
           country. We lived in the gray area where we
            could be arrested and incarcerated in all
          but name for being dangerous. (Laura Ziegler)

          Because of a few dramatic episodes sometimes
              involving persons with a psychiatric
            diagnosis, all of us who have a diagnosis
              are made to face forfeit of our civil
                    liberties. (Joseph Walsh)

    Joe Young testified that when one of his institutionalized
    clients called 911 for help, he was promptly moved from a
    cottage and full grounds privileges into a locked ward and
involuntarily administered Lithium. When deaths and incidents of
  abuse occur in institutions, P&A organizations have difficulty
    accessing records about the incidents. Essentially, many
  institutions self-investigate crimes and may even compromise
      evidence that could be used in criminal proceedings.

            These are some of the reasons that these
            institutions have to be monitored, and the
            Federal Government should stop subsidizing
            the unnecessary confinement of persons in
                  the institutions. (Joe Young)

  According to information provided by DOJ, as of June 15, 1999,
 DOJ's Special Litigation Section is investigating mental health
  services in 65 health care and correctional facilities. It is
  also monitoring remedial settlements involving mental health
    services in 128 health care and correction facilities and
  hundreds of community placements from facilities under court
 orders. DOJ states that since 1993 the Section has investigated
  mental health services and monitored remedial settlements to
    improve mental health services in over 300 health care and
 correctional facilities in more than 42 states, the District of
 Columbia, the Commonwealth of Puerto Rico, and the Territory of
                              Guam.

    As a result of the Section's efforts, tens of thousands of
persons with mental illness are now receiving adequate services.
  (Special Litigation Section, U.S. Department of Justice, June
                            25, 1999.)

     Nonetheless, NCD heard again and again how helpless and
          powerless people felt in treatment settings.

               Patients are routinely coerced into
              forfeiting their rights in the name of
            treatment and, in general, the system is
            structured to render consent meaningless.
                         (Diana Rickard)

  Walsh testified that inpatient commitment in New York State is
  achieved with the systematic participation of New York State
              Mental Hygiene Legal Services (MHLS).

              MHLS, originally intended as a legal
           advocacy service, has become a rubber stamp
               for doctors' orders for involuntary
            commitment. First, the doctor requests a
            judge to impose an involuntary commitment
              order. Invariably, a judge grants the
          doctor's request. When advocacy is requested
          by the subject of the commitment order, MHLS
              responds that they cannot or will not
          challenge the judge's order. The judge won't
            challenge the doctor; MHLS won't challenge
            the judge. Doctors' orders for commitment
          [are] facilitated with the appearance of due
           process. The state has therefore created an
             apparatus to create the illusion of due
                     process. (Joseph Walsh)

    Like other elements of the mental health system, advocacy
   services and rights protection are also implemented without
      major participation by people labeled with psychiatric
    disabilities themselves, leading to an often paternalistic
  attitude of "best interests" rather than paying attention to
    what people want for themselves. Advocacy services need to
          become accountable to the people they serve.

Virtually nothing has been done at the local or federal level to
      protect people with disabilities who are victimized in
              institutions and in their communities.

           Until recently, the crime victims' movement
            has not worked systematically to identify
          issues and challenges involved in responding
                more effectively to victims with
           disabilities. Improving service delivery to
              people with disabilities must become a
           priority, because the crime victims' rights
             movement is founded on the premise that
             every crime victim deserves fundamental
          justice and comprehensive, quality services.
            (U.S. DOJ Office for Victims of Crime, OVC
          Bulletin: Working with Victims of Crime with
                  Disabilities, September 1998.)

  The OVC Bulletin cites a survey by Dick Sobsey, R.N., Ed.D.,
indicating that 48.1 percent of the perpetrators of sexual abuse
   against people with disabilities had gained access to their
  victims through disability services. OVC Bulletin notes that
     people who are victimized are vulnerable to exacerbated
 suffering. Also, most victims will experience a sense of shock,
 disbelief, or denial that the crime occurred, often followed by
  cataclysmic emotions, including fear, anger, confusion, guilt,
  humiliation, and grief. People with disabilities, however, may
    have intensified reactions because they may already feel
    stigmatized and often have low self-esteem due to societal
                            attitudes.

   Unlike most OVC Bulletins focusing on special categories of
 victims, Working with Victims of Crime with Disabilities offers
      no authoritative "census" describing the numbers and
      characteristics of the victim population under review,
    because--again--no authoritative data currently exist. The
  Bulletin does cite several studies, including one published in
    the American Journal of Psychiatry, that revealed that 81
    percent of psychiatric inpatients had been physically or
  sexually assaulted at some point in their lives. The Colorado
   Department of Health estimates that upward of 85 percent of
    women with disabilities are victims of domestic abuse, in
  comparison with, on average, 25 to 50 percent of the general
population. These statistics, which have been replicated in many
  states, call into question the "brain disease" model of mental
illness, indicating that trauma, not disordered brain chemistry,
                explains many emotional reactions.

Tina Minckowitz, a representative of the Brooklyn Mental Hygiene
  Court Monitoring Project, expressed concern that due process
hearings prior to involuntary commitment do not protect people's
                             rights.

              In New York, as in probably most other
            states now, they have to--they're supposed
            to--go through a court hearing before they
           can drug you by force, unless they consider
          it an emergency. And basically 90 percent of
              the time--99 percent of the time--the
           psychia trists get to do what they want. So
                the hearings are not giving people
            protection against forced drugging. (Tina
                           Minckowitz)

Minckowitz testified that emergency forced drugging is extremely
abused and that people are force-drugged in institutions because
  they speak up for their rights or because they speak up when
        they see another patient or inmate being abused.

  According to testimony, funding and resource limitations are
 leaving vulnerable people labeled with psychiatric disabilities
 unprotected. Lawson, who has worked in the PAIMI program for 12
    years, testified that more people are eligible for PAIMI
    services, but current funding levels prohibit this. As a
part-time attorney who is assisted by two other part-time staff,
      she must cover a 15-county region in western New York,
 encompassing two cities and a number of rural areas. Because of
   such staffing and funding limitations, Lawson stated that a
   three-hour drive to interview one client is not unusual. If
 funding were higher, she testified, they could move quickly and
       expediently to protect the rights of their clients.

  Psychiatrist and psychiatric survivor Daniel Fisher testified
  that the label of mental illness should not deprive people of
            their fundamental constitutional rights.

          What happens in a country, as it happened in
          Nazi Germany, when people who are labeled as
            fundamentally different and flawed, as our
            biological psychiatry model does, the next
              step can be the deprivation of rights,
          forced treatment, and gradual extermination.
              I hope that we recognize that it could
            happen in any country. We should make sure
           that there's due process of law protection,
            so if somebody is hospitalized or in the
             psychiatric system, they have access to
                legal advocates. (Daniel Fisher)

People labeled with psychiatric disabilities can be subjected to
     research with little legal oversight. Written testimony
 submitted by Cliff Zucker, the executive director of Disability
  Advocates, Incorporated (DAI), which provides P&A services for
    persons with psychiatric disabilities in New York State,
  outlined his agency's court challenges to nontherapeutic and
  risky experiments conducted in state psychiatric facilities on
 those incapable of giving informed consent. The result has been
  an invalidation by the courts of research regulations of the
state Office of Mental Health and a move by the state Department
    of Health to convene an advisory committee to devise new
    guidelines for non-federally funded psychiatric research.

  Zucker reported that institutional review boards (IRBs) that
  oversee and approve medical experiments are under pressure to
    sanction risky research on those who cannot give informed
  consent and that it is unlikely that many who fully understand
  the risks would agree to participate without seeing a direct,
                    personal medical benefit.

            Leading psychiatrists and a high-ranking
           official at the state Psychiatric Institute
            in Manhattan, the state clearinghouse for
           drug research on kids and adults, have been
          lining their pockets with hefty drug-company
            speaking fees, consulting deals, board m
            emberships, and subsidized international
            trips, state records show. Two members of
            the Psychiatric Institute in-house panel
             directly responsible for protecting the
              rights of mentally ill patients have
            financial ties to drug mega-firms like Eli
            Lilly, Glaxo Wellcome, and Bristol-Myers
          Squibb. The drug makers, while enriching the
            psychiatrists, are also picking up the tab
            for research at the Psychiatric Institute,
               where their products are tested for
            treatment of such ailments as depression,
                hyperactivity, and schizophrenia.
          Drug-company-funded studies are often led by
           the same researchers who have private money
            deals with the firms. (Analyze This: Docs
            Get Drug Company $$ by Gregg Birnbaum and
          Douglas Montero, The New York Post, February
                            28, 1999.)

 Zucker also cautioned that people from minority communities are
   especially vulnerable to becoming research subjects. In the
 infamous experiments conducted in New York, in which young boys
    were given doses of fenfluramine, a procedure without any
potential therapeutic benefit, he notes that all of the subjects
        were either African Americans or Latino Americans.

  The understaffed and underfunded federal Office of Protection
 from Research Risks (OPRR) at the U.S. Department of Health and
  Human Services investigates federally funded research programs
 involving human research subjects to ensure compliance with the
 Federal Policy for the Protection of Human Subjects (also known
  as the Common Rule). However, the Common Rule only applies to
  subjects in research regulated by the FDA and to subjects in
  research sponsored by some federal other agencies. Privately
 funded research is not covered by the Common Rule, so there are
no protections for human beings who participate in this research.

   Joseph Glazer, of the Mental Health Association in New York
  State, summarized discrimination against people labeled with
psychiatric disabilities and violations of their civil liberties.

            Having laws on the books that say people
                 can't vote if they are mentally
                incompetent--or, in some states,
            "lunatics"--is discrimination. Having laws
           on the books that say a diagnosis of mental
            illness is sufficient grounds to take your
            children away in a family court proceeding
             is discrimination. Having laws sweeping
            across the country that say that it's okay
            to put violent sexual predators in state
              psychiatric hospitals with vulnerable
           people, who have in many cases already been
                victimized by such predators, is
                 discrimination. (Joseph Glazer)

    Glazer concluded that mental health advocates must fight
             discrimination everywhere they find it.

  Ziegler testified graphically as to the way in which the lives
  of people labeled with psychiatric disabilities are devalued.

              A friend of my family had a child with
              Prader-Willi syndrome [which causes an
              uncontrollable desire to eat] who was
          institutionalized. She was struck and killed
              by a car while crossing [a highway] in
            search of food. When I asked him how his
           damages actio n was progressing, he said it
          wasn't. He said all the lawyers had told him
            that her life had no value. That was the
            term the Nazis used to justify the killing
            of people with disabilities. It seems we
            have not come very far after all. (Laura
                            Ziegler)

  Debbie Whittle testified to the power of perception and labels
  in defining the reality and experience of people labeled with
    psychiatric disabilities. She grew up in a family with two
 active alcoholics--a chaotic, unstable, unsafe environment that
 was marked by abuse and neglect. As a teenager, she experienced
  incest for several years and at age 17 left home, thinking she
  could just simply walk away and create a new life for herself.
  She did not realize, however, that the abuse and neglect had
 traumatized her so badly that she had disconnected from her own
  body, knowledge, wisdom, truth, and her capacity to self-heal.

            There is a high correlation between trauma
              histories and the experience of being
             psychiatrically labeled. There are some
            common responses to trauma. It is common,
            when experiencing trauma, for a person to
          become numb, leave their body. Disassociate.
              It is incredible to me that these very
           coping strategies that kept folks alive are
            then called a disorder. It is absolutely
              amazing to me that our psyche has the
          ability to have us leave our bodies when our
          bodies are being tortured. That seems rather
             sane to me. Who would choose to stay in
            their body and experience that? And then,
             the first thing that happens when those
                folks show up for help is, they're
               called--they're told that they have
           disassociative disorder, instead of saying,
            "You have this wonderful capacity that has
           kept you sane and whole and alive." I would
           just like to suggest that we move away from
           a pathology-based mental health system that
             seems kind of like an oxymoron to me. I
           believe that the label of mental illness is
            the beginning of human rights violations.
          Healing is hard enough work without it being
                  pathologized. (Debbie Whittle)

   ADA has been of only limited benefit to people labeled with
 psychiatric disabilities. Although all people with disabilities
   have experienced some backlash as a result of ADA (which is
  viewed by some not as a civil rights law but as an entitlement
 law), in general, some progress has been made over the past few
  years. However, people labeled with psychiatric disabilities
have seen little improvement. In fact, widely publicized reports
      of violent crimes by people labeled with psychiatric
    disabilities, although they are statistically rare, have
    precipitated stronger and more prevalent prejudice, which
 extends to the vast majority of people labeled with psychiatric
        disabilities who are nonviolent and law-abiding.

    Negative stereotypes about people labeled with psychiatric
     disabilities are widely perpetuated by the media, which
    frequently seize on crimes involving people labeled with
   psychiatric disabilities and overreact. Unfortunately, such
  media reports harm and stigmatize the millions of other people
 labeled with psychiatric disabilities who do not commit crimes.

          Because of a few dramatic episodes sometimes
              involving persons with a psychiatric
            diagnosis, all of us who have a diagnosis
            are made to face forfeiture of our civil
                    liberties. (Joseph Walsh)

  Patrick Smellie's research for his report on the news media's
  coverage of mental illness revealed crime reporters fall into
      the trap of ignorance in portraying suspects. Feeding
    Stereotypes was published in the March/April 1999 issue of
      Quill, the publication of the Society of Professional
  Journalists. Although Smellie found mainstream American news
 reports involving mental illness restrained compared with those
  in Australia and Britain, he cautions that he is not endorsing
                the American news media coverage.

           Rather, it suggests something subtler: that
           the relentless framing of mental illness in
            the context of violence and criminality is
            amplifying, sustaining, and legitimizing a
           largely false picture of mental ill-health.
                (Mental Illness Coverage: Feeding
              Stereotypes by Patrick Smellie, Quill,
                        March/April 1999.)

  George Ebert of the Mental Patients Liberation Alliance in New
  York State echoed the opinions of most people who testified.

              I would just like to offer our working
            platform. The first point is that we speak
            for ourselves. Next is, we seek an end to
            forced treatment of any kind. We seek full
           access to community support, advocates, and
          legal assistants in all involvement with the
           mental health system. We call for access to
            holistic alternatives to the medical model
           monopoly of mental health services. We seek
            an end to destructive psychiatric labels,
              and we demand accountability from the
                psychiatric system. (George Ebert)

                  Public Policy Recommendations

                  Reinventing Social Security.

   Simplify SSA disability regulations. SSA's redesign process
    should include uniform standards for SSI and SSDI program
    disability determinations, work incentives, and equitable
earning amounts during trial work periods, regardless of program
                    eligibility or disability.

SSA should provide ongoing training for its agency personnel, as
  well as beneficiaries and service providers, on available work
     incentive programs, including how to write a PASS plan.

   Social Security establishes earnings limits for people with
  disabilities, except for people with visual impairments whose
  earnings limits are established by law, and at a much higher
  rate than for other people with disabilities. When federal law
          permits such discrimination, it is egregious.

  Congress should enact legislation that makes earnings limits
                equal--regardless of disability.

HCFA should revise existing regulations to simplify the Medicaid
              waiver application process for states.

 Many people indicate that a lack of affordable health care is a
            major disincentive to returning to work.

 Federal law should be changed to allow continuation of Medicaid
        and Medicare coverage until equal or better health
      benefits--including voluntary mental health parity and
  prescription drug coverage--are available through an employer.

The Federal Government should ensure greater coordination at the
 federal, state, and local levels in the delivery of services to
          people labeled with psychiatric disabilities.

  Congress should amend the FLSA and eliminate the provision for
   patient workers and other provisions that allow people with
    disabilities to work without compensation or at below the
                          minimum wage.

DOL should revise applications for certificates of exemption and
all other reporting documents to request such information as the
  number of hours each individual worked, number of people who
        worked, and the hourly wage paid to each person.

    Without this information it is impossible to monitor these
                            programs.

Information about successful model employment programs should be
  quickly disseminated and shared among agencies, task forces,
    committees, and others concerned with employment of people
              labeled with psychiatric disabilities.

    In addition, Congress should fund additional demonstration
   projects that investigate employment of people labeled with
                    psychiatric disabilities.

The Federal Government should strive to be the model employer of
  people with disabilities. Congress should investigate why the
  Federal Government has consistently failed to recruit, retain,
            and promote more people with disabilities.

  This investigation should identify existing barriers and make
  recommendations on the employment and promotion of people with
     disabilities in all branches of the Federal Government,
  including Congress. Federal forms should be screened to ensure
  that questions pertaining to psychiatric disabilities do not
                      violate existing laws.

 EEOC should penalize federal agencies that discriminate or fail
     to comply with existing provisions of all federal laws,
    including reporting requirements. Congress should increase
 funding for EEOC and DOJ ADA-related training for employers and
                      the judicial system.

  ADA employment-related technical assistance and training for
  employers and also the judicial system are essential to ensure
    that people labeled with psychiatric disabilities are not
    discriminated against in the workplace or when they take
                  employment cases to the court.

          Human research subjects should be protected.

The National Animal Welfare Act of 1966 protects animals who are
  used in research, but no federal law extends those same rights
to people who are decisionally incapacitated. In early 1999, the
   National Institute of Mental Health halted several research
   projects because they failed to give adequate protection to
                      their human subjects.

Congress should enact strong federal laws that protect all human
  research subjects--especially people who are incapacitated and
   children--involved in federally as well as privately funded
  research. These laws should require, prior to participation in
    research programs, signed informed consent forms that are
obtained without coercion and clearly state any possible adverse
events that could result from participation in the research. The
law should provide strict penalties for research facilities that
                         fail to comply.

   Protect the civil rights of people labeled with psychiatric
                          disabilities.

Congressional hearings should be held on civil rights violations
      against people labeled with psychiatric disabilities.

  Prosecute persons, institutions, or entities that violate due
   process, durable power of attorney, advance directives, and
    informed consent rights of people labeled with psychiatric
                          disabilities.

  Vigorous federal enforcement of civil rights laws such as ADA
  and other laws that protect the rights of people labeled with
              psychiatric disabilities is essential.

    In addition, Congress should increase funding for federal
    technical assistance programs and to ensure enforcement of
                          existing laws.

  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 civil rights of people with disabilities.
  With the elimination of state funding for prison legal service
  agencies, it is essential that P&A services are available to
  people labeled with psychiatric disabilities in correctional
 facilities. However, P&A organizations must be held accountable
 to their constituencies and meaningfully involve people labeled
  with psychiatric disabilities in programs and policymaking and
        as paid staff, including in management positions.

    Establish local, accessible, 24-hour emergency assistance
    networks for people labeled with psychiatric disabilities.

Such networks could be operated using existing victim assistance
  programs that have trained staff and volunteers or that have
 significant numbers of people with a variety of disabilities on
                     staff or as volunteers.

    People labeled with psychiatric disabilities should not be
   denied their constitutional right to vote simply because of
    their disability or the type of facility in which they are
                      receiving treatment.

  Therefore, Congress should enact a federal law protecting the
  voting rights of people labeled with psychiatric disabilities.

   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.

      Currently, federal funding for psychiatric research is
     concentrated almost entirely on medical and biochemical
approaches. Only a tiny fraction of research funding is directed
 toward programs of community support, and even less is directed
    toward peer support and other self-help approaches. This
    imbalance is only one of the reasons that such approaches
  receive less funding and are often funded only as time-limited
  demonstration projects, despite their considerable record of
  success and despite the fact that they tend to be favored by
    people labeled with psychiatric disabilities themselves.

 Further, Congress should amend statutes regarding the review of
    grant applications for psychiatric research to ensure that
  people labeled with psychiatric disabilities are included in
              meaningful ways in the review process.

  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.

  The successful components of employment demonstration programs
    should be implemented while identified weakness should be
strengthened. Also, information about successful programs should
     be disseminated and shared among agencies, task forces,
    committees, and others concerned with employment of people
              labeled with psychiatric disabilities.

  HCFA should revise existing regulations to make it easier for
  states to apply for Medicaid waivers under the Balanced Budget
  Act of 1997 for people with disabilities who return to work.

People labeled with psychiatric disabilities must be included in
    significant numbers in the planning, implementation, and
     evaluation of employment programs. It is essential that
     employment and training programs span the full range of
 employment options, rather than segregating people labeled with
     psychiatric disabilities in low-wage positions with few
   opportunities for advancement, or in segregated "make-work"
                            programs.

Currently, many people labeled with psychiatric disabilities who
    already have advanced degrees or considerable high-level
employment experience are actively discouraged from returning to
  their previous type and level of employment, and are shunted
    into programs far below their level of interest or skill.


                          In Conclusion

Americans with psychiatric disabilities believe--and this report
 confirms--that they are denied the self-determination necessary
      to control their own lives. Currently, politically and
 financially powerful forces oppose any consumer/survivor change
  to the existing mental health system. However, the system must
change, and America must respond. Deprivation of human and civil
 rights cannot be tolerated in a country that was founded on the
  premise that everyone is created equal. The term "liberty and
   justice for all" must be underscored and applied for people
              labeled with psychiatric disabilities.


                            Glossary

                ACT--assertive community treatment

              ADA--Americans with Disabilities Act

CMHS--the Center for Mental Health Services is the bureau within
  SAMHSA that most directly deals with consumer-run services and
                            programs

  Consumer--a person who has used or still may be using mental
    health services, including medication, and who generally
             identifies her/himself with a diagnosis

  CRIPA--Civil Rights of Institutionalized Persons Act of 1980

             CSH--Corporation for Supportive Housing

             DAI--Disability Advocates, Incorporated

DD Act--Developmental Disabilities Assistance and Bill of Rights
                           Act of 1975

               DMA--Division of Medical Assistance

                    DOJ--Department of Justice

                    DOL--Department of Labor

        ECT--electroconvulsive therapy (shock treatment)

          EEOC--Equal Employment Opportunity Commission

        ERISA--Employment Retirement Income Security Act

                FDA--Food and Drug Administration

                FHAA--Fair Housing Amendments Act

                  FLSA--Fair Labor Standards Act

                  GAO--General Accounting Office

                HAP--Homeless Assistance Programs

            HCFA--Health Care Financing Administration

        HOPA--Housing Opportunities for Persons with AIDS

        HUD--Department of Housing and Urban Development

        IDEA--Individuals with Disabilities Education Act

              IEP--individualized education program

IOC--involuntary outpatient commitment, a legal process by which
 persons may be forced to accept treatment against their will in
     the community, most often through the use of medication

                 IRB--institutional review board

                LRE--least restrictive environment

                  MCO--managed care organization

          MHLAC--Mental Health Legal Advisors Committee

               MHLS--Mental Hygiene Legal Services

              MHPA--Mental Health Parity Act of 1996

          NAMHC--National Advisory Mental Health Council

          NAMI--National Alliance for the Mentally Ill

               NCD--National Council on Disability

    NEC--National Empowerment Center--a CMHS-funded technical
  assistance center, providing information and referral services
                    to consumers and survivors

    NIDRR--National Institute on Disability and Rehabilitation
                            Research

                    NIMBY--not in my back yard

 NIMH--National Institute of Mental Health, the institute within
    the National Institutes of Health charged with conducting
          research related to medical model treatments

                    NSH--Napa State Hospital

               OPM--Office of Personnel Management

          OPRR--Office of Protection from Research Risks

                  P&A--protection and advocacy

    PAIMI--protection and advocacy for individuals with mental
                             illness

                        Parity--equality

            PASS--Plans for Achieving Self-Sufficiency

              PERF--Police Executive Research Forum

                    PHA--public housing agency

           RSA--Rehabilitation Services Administration

Restraint--a process in which patients are physically restrained
  with mechanical devices in order to make them immobile; some
     people include the use of drugs, terming this "chemical
                            restraint"

SAMHSA--within the U.S. Department of Health and Human Services,
  the Substance Abuse and Mental Health Services Administration
    administers programs that deliver services, do research or
   service delivery, support technical assistance programs for
                  consumer-directed activities

                  SBH--severe behavior handicaps

 SCHIP--State Children's Health Insurance Program Seclusion--the
   removal of a person in a psychiatric facility to a private,
generally locked, space, often without clothing, access to food,
                or access to bathroom facilities

                SED--severe emotional disturbance

                   SMI--serious mental illness

                SSI--Supplemental Security Income

             SSDI--Social Security Disability Income

 Survivor--a person who has experienced the mental health system
      and generally has negative experiences or impressions;
 psychiatric survivors believe they have not only survived their
  original emotional distress but also the "help" they received

                  TAC--Treatment Advocacy Center

                  VR--vocational rehabilitation


                            Appendix

          Mission of the National Council on Disability

                      Overview and Purpose

  NCD is an independent federal agency with 15 members appointed
 by the President of the United States and confirmed by the U.S.
                             Senate.

  The overall purpose of NCD is to promote policies, programs,
  practices, and procedures that guarantee equal opportunity for
  all individuals with disabilities, regardless of the nature or
   severity of the disability; and to empower individuals with
  disabilities to achieve economic self-sufficiency, independent
    living, and inclusion and integration into all aspects of
                            society.

                         Specific Duties

  The current statutory mandate of NCD includes the following:

  * Reviewing and evaluating, on a continuing basis, policies,
    programs, practices, and procedures concerning individuals
        with disabilities conducted or assisted by federal
   departments and agencies, including programs established or
    assisted under the Rehabilitation Act of 1973, as amended,
   or under the Developmental Disabilities Assistance and Bill
      of Rights Act; as well as all statutes and regulations
   pertaining to federal programs that assist such individuals
    with disabilities, in order to assess the effectiveness of
    such policies, programs, practices, procedures, statutes,
    and regulations in meeting the needs of individuals with
                          disabilities.

    * Reviewing and evaluating, on a continuing basis, new and
  emerging disability policy issues affecting individuals with
   disabilities at the federal, state, and local levels and in
   the private sector, including the need for and coordination
    of adult services, access to personal assistance services,
     school reform efforts and the impact of such efforts on
    individuals with disabilities, access to health care, and
    policies that act as disincentives for individuals to seek
                      and retain employment.

    * Making recommendations to the President, Congress, the
      secretary of education, the director of the National
    Institute on Disability and Rehabilitation Research, and
    other officials of federal agencies about ways to better
      promote equal opportunity, economic self-sufficiency,
    independent living, and inclusion and integration into all
       aspects of society for Americans with disabilities.

    * Providing Congress, on a continuing basis, with advice,
    recommendations, legislative proposals, and any additional
       information that NCD or Congress deems appropriate.

        * Gathering information about the implementation,
  effectiveness, and impact of the Americans with Disabilities
              Act of 1990 (42 U.S.C. 12101 et seq.).

   * Advising the President, Congress, the commissioner of the
      Rehabilitation Services Administration, the assistant
   secretary for Special Education and Rehabilitative Services
   within the Department of Education, and the director of the
  National Institute on Disability and Rehabilitation Research
    on the development of the programs to be carried out under
           the Rehabilitation Act of 1973, as amended.

    * Providing advice to the commissioner with respect to the
       policies and conduct of the Rehabilitation Services
                         Administration.

    * Making recommendations to the director of the National
   Institute on Disability and Rehabilitation Research on ways
      to improve research; service; administration, and the
    collection, dissemination, and implementation of research
          findings affecting persons with disabilities.

  * Providing advice regarding priorities for the activities of
       the Interagency Disability Coordinating Council and
        reviewing the recommendations of this council for
    legislative and administrative changes to ensure that such
      recommendations are consistent with NCD's purpose of
        promoting the full integration, independence, and
          productivity of individuals with disabilities.

   * Preparing and submitting to the President and Congress an
   annual report titled National Disability Policy: A Progress
                            Report.

                          International

In 1995, NCD was designated by the Department of State to be the
 U.S. government's official contact point for disability issues.
  Specifically, NCD interacts with the special rapporteur of the
  United Nations Commission for Social Development on disability
                            matters.

             Consumers Served and Current Activities

  While many government agencies deal with issues and programs
   affecting people with disabilities, NCD is the only federal
      agency charged with addressing, analyzing, and making
  recommendations on issues of public policy that affect people
 with disabilities regardless of age, disability type, perceived
    employment potential, economic need, specific functional
 ability, status as a veteran, or other individual circumstance.
 NCD recognizes its unique opportunity to facilitate independent
 living, community integration, and employment opportunities for
people with disabilities by ensuring an informed and coordinated
approach to addressing the concerns of persons with disabilities
    and eliminating barriers to their active participation in
                    community and family life.

    NCD plays a major role in developing disability policy in
    America. In fact, it was NCD that originally proposed what
  eventually became the Americans with Disabilities Act (ADA).
  NCD's present list of key issues includes improving personal
  assistance services, promoting health care reform, including
  students with disabilities in high-quality programs in typical
  neighborhood schools, promoting equal employment and community
  housing opportunities, monitoring the implementation of ADA,
  improving assistive technology, and ensuring that persons with
      disabilities who are members of minority groups fully
                     participate in society.

                        Statutory History

    NCD was initially established in 1978 as an advisory board
   within the Department of Education (Public Law 95-602). The
    Rehabilitation Act Amendments of 1984 (Public Law 98-221)
           transformed NCD into an independent agency.

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