From Privileges to Rights:
People Labeled with Psychiatric Disabilities Speak for Themselves
National Council on Disability
January 20, 2000
National Council on Disability
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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 Ervin, and Judi
Chamberlin for their assistance in drafting this report. NCD also
wishes to thank those who testified at the Albany, New York, hearing
on November 20, 1998, as well as those who submitted written and
other forms of testimony.
For many people, testifying and submitting testimony
was an act of real courage. NCD recognizes and acknowledges this
fact.
This report is based on their testimony.
Table of Contents
Acknowledgments
Executive Summary
Chapter 1
When Helping Hurts
Public Policy Recommendations
Chapter 2
Creating New Lives: Independent
Housing, Economic Supports, Meaningful Work
Public Policy Recommendations
Chapter 3
Patients' Rights: Parity, Alternatives,
Inclusion
Public Policy Recommendations
Chapter 4
Criminal Justice
Public Policy Recommendations
Chapter 5
I Had to Give My Child Away
Because She Has a Disability
Public Policy Recommendations
Chapter 6
A Zillion Forms and Still No
Civil Rights
Public Policy Recommendations
In Conclusion
Glossary
Appendix
Mission of the National Council
on Disability
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. |