The Treatment Advocacy Center is celebrating its five year
anniversary! This special issue of Catalyst launches our new look with a
snapshot of the past five years � in the legislatures, in the courts, in
research, and in homes across America. This issue is dedicated to all those who
are suffering and their advocates, people who are passionate about reform, who
refuse to give up, who fight the status quo. People like you.
Feel free to print out a PDF
copy of this newsletter for easier reading or to share at a conference or
event.
In this issue:
Why TAC exists: Looking back five years
by Treatment Advocacy Center President E. Fuller Torrey, M.D.
Five years ago, Mr. and Mrs. Theodore Stanley asked me
whether anything could be done to help the large number of individuals with
severe psychiatric disorders who were living on the streets, incarcerated in
jails, and regularly being victimized. I answered that the treatment system was
broken, in part because misguided civil libertarians had turned brain diseases
into a civil rights issue. Individuals with severe psychiatric disorders had
essentially been kidnapped by lawyers.
The Stanleys then generously agreed to partially fund a
modest effort to improve the treatment system that emerged as the Treatment
Advocacy Center. Friends and colleagues said that it would be a quixotic fight
for five reasons: civil libertarian lawyers were well funded, antipsychiatry
groups would oppose us, theoretical allies would not join us because we were
not �politically correct,� state legislators would not listen, and supporters
would not donate the matching funds we needed to survive.
Five years later, it is clear that my friends were correct
regarding the first three reasons but wrong on the last two. State legislators
have listened, and this has resulted in important changes
in treatment laws in California, Idaho, Illinois, Maryland, Minnesota, Montana,
Nevada, New York, North Dakota, South Dakota, Utah, Washington, West Virginia,
Wisconsin, and Wyoming. Many of the individuals Mr. and Mrs. Stanley wished to
help are receiving treatment today because of changes in state laws brought
about by TAC�s efforts.
Supporters have also been extraordinarily generous in
donating the matching funds we need to survive, and TAC has even modestly grown
in size. These donations are often accompanied by passionate letters of
support, making it clear that we are not alone in this fight.
Personally, helping to start TAC has been one of the most
satisfying things I have done in my life. Until we find the causes and
definitive treatments for schizophrenia and bipolar disorder, we have an
obligation to those who are suffering to try to improve their lives. Except for
biological chance, any one of us might today be there, living on the streets or
in jail. TAC is the only organization willing to take on this fight, and I am
very proud to be part of it.
And we are just getting warmed up.
There have been many legislative successes in the last five
years - but there is still much work to be done. Today, nine states
(Connecticut, Florida, Maine, Maryland, Massachusetts, Nevada, New Jersey, New
Mexico, Tennessee) still offer NO option for assisted outpatient treatment. And
about half of states require dangerousness before the courts can intervene. So
even as we celebrate successes like these, work continues.
|
State |
Date Passed |
Description |
|
Wyoming |
March 1999 |
Revised treatment standard, now considers probability of
destabilization. |
|
Nevada |
May 1999 |
Now considers past treatment history to determine
probability of harm. |
|
New York |
August 1999 |
Kendra�s Law - assisted outpatient treatment; revised
treatment standard. |
|
South Dakota |
February 2000 |
Revised treatment standard, considers past treatment
history. |
|
Ontario |
June 2000 |
Brian�s Law - allows community treatment orders. |
|
Washington |
April 2001 |
Requires great weight be given to evidence of prior
history of pattern of decompensation and discontinuation of treatment. |
|
Montana |
April 2001 |
Clarifies assisted outpatient treatment and other
provisions. |
|
West Virginia |
May 2001 |
Revised treatment standard; voluntary treatment agreement;
consideration of previous history. |
|
Wisconsin |
September 2001 |
Maintained progressive treatment standard beyond sunset
date. |
|
California |
October 2001 |
Consideration of prior history and mandated consideration
of family member testimony. |
|
Minnesota |
June 2001 |
Revised treatment standard, need treatment to prevent
deterioration. |
|
Idaho |
March 2002 |
Revised treatment standard modifies �gravely disabled�
from �essential needs� to �basic needs.� |
|
California |
September 2002 |
Laura�s Law - assisted outpatient treatment; revised
treatment standard. |
|
Utah |
March 2003 |
Revised treatment standard. Danger no longer need be
�immediate� and includes the substantial risk of �protracted loss or
impairment of the function of ... mental faculty.� Considers historical
information. |
|
North Dakota |
April 2003 |
Revised treatment standard. |
|
Maryland |
May 2003 |
Modifies emergency evaluation criteria, �imminent�
dangerousness no longer required. |
|
Illinois |
Summer 2003 |
Revised treatment standard, includes consideration of
prior history. |
�����������������
People often ask us how to change their state�s treatment
law. Our publications and website offer many tips and ideas. But we thought
that for this special anniversary edition of Catalyst [subscribe here], we would
call on the real experts - some of the many people across the country who have
been instrumental in successfully changing their state laws.
Every state and situation is different. Sometimes these
stories offer conflicting advice � for instance, one person suggests
commissions are useless, another recounts how a commission in his state made
all the difference. Other basic tenets seem to hold true in all cases � like
preparing materials in advance and not being shy about talking to the media.
Today, advocates across the nation are fighting battles from
their statehouses to their courthouses to secure better laws for people who are
the most ill. Learning from one another�s experiences, good and bad, can be a
powerful way to accelerate change.
A scholar and psychiatrist: Things I have learned in changing civil commitment laws
by Darold Treffert, M.D.
Dr. Treffert, a Wisconsin psychiatrist, has been a tireless
advocate for reform of his state�s treatment law. He coined the term �dying
with their rights on� and was among the first to begin cataloguing preventable
tragedies � his vision inspired TAC�s database at /ep.asp.
His work in passing a landmark law in Wisconsin has reverberated through the
nation. Here he offers advice on what worked in his legislative battles.
Civil libertarians hate them because they clutter up, with
glaring and irrefutable reality, what they would prefer to be philosophical debates
about free will, police powers and parens patriae. Legislators understand, and
relate to such �anecdotes� (as opponents dismissively refer to them) because
they put a real, live face and human price on the tragedies that ensue from
non-action. Witness [New York�s] Kendra�s Law, [California�s]
Laura�s
Law, and others that have emerged after (regrettably) some tragedy. In
Wisconsin, the Onalaska shootings of a priest and three parishioners by an
obviously ill man whose family had vainly tried to help before that tragedy was
persuasive evidence for change. Such instances provide compelling, real-life
(and death) evidence of need for thoughtful deliberation, and then, change.
Professionals can certainly use their expertise to help
define and explain the problem, and even help craft remedies. But in the
legislative arena where these battles are fought, letters, testimony and phone
calls from families and friends, and concerned groups like NAMI, trying to
exercise a simple �right to be rescued� over a �right to be sick� for persons
they care deeply about, are more persuasive and influential than professional
testimony alone. The most effective strategy is a combined effort of families,
friends and a concerned public with knowledgeable, down to earth, articulate,
and equally concerned professionals.
�Warehouses,� �One Flew over the Cuckoo�s Nest,� �locking
people up,� and other outdated stereotypes about psychiatric facilities and
treatment continue to exist, and be promoted, by opponents of civil commitment
reform in spite of overwhelming evidence to the contrary regarding modern-day
treatment and programs, the vast majority of which are out-patient, not
in-patient, and short-term, not long-term.
Like the wheels of justice, the wheels of legislative change
grind slowly also. It was 12 years, and several legislative sessions, before
[Wisconsin�s progressive treatment standard] the �Fifth Standard� finally
became law in 1996. But even that long delay was not wasted time in that during
those years hearings and other publicity and discussions took place that gave
the issues involved necessary visibility and debate. In that interim, other
innovations occurred beyond enacting the law itself, such as settlement
agreements, and improved local programming for chronic mentally ill persons.
But such delays entail multiple meetings, waiting your turn at lengthy
hearings, enduring stereotyping and a willingness to compromise to accomplish
significant changes. But it is well worth the effort once successfully completed.
A mother and first-time advocate: What I learned when we took on the legislature � and won
by Sheree Spear
Sheree Spear had never set foot inside a capitol building
and knew little of the legislative process. What began in November 2002 as a
one-person, dining room table, letter-writing campaign ended eight months later
in a bill with the Governor�s signature. A tenacious first-time advocate, here
she shares some lessons she learned.
Getting this law passed was one of the most stressful,
challenging, and rewarding experiences I�ve had.
My passion for changing North Dakota�s treatment law
came from my inability to get my son in for even a 24-hour psychiatric
evaluation when we could all see he was suicidal, paranoid, and delusional. We
were repeatedly told we couldn�t get him help because we couldn�t prove he was
dangerous.
My passion
also comes from seeing the inner pain my son lived with. And from watching how
the paranoid ideations prevented him from voluntarily accepting the very
treatment that would free him. Here�s how he describes the experience of having
schizophrenia and not getting proper treatment:�I know now that there is a
heaven and a hell. And they are here on earth. Because what is constant pain
and suffering? That�s hell. That�s where I�m at. And I can see heaven here,
just as clearly as I can see you sitting there. And I watch other people living
in it. But I can�t get there.�
Many
people will not care about the issue unless they first hear personal stories.
Early on, a legislator opposed to our bill set up what turned out to be an
informal hearing. I thought I was meeting with two or three people, but when I
walked in, nine legislators were seated around the table and opposition groups
had been invited and sat against the wall.
I was asked to �immediately get to the exact words in the
law I wanted changed.� Instead, I said, �Before I get into specific language,
I�d like to make a 1-2 minute opening statement.� I knew they would split hairs
and not care about why the law needed to be changed unless they heard personal
stories first.
It helped me to have a 2-minute, memorized, compelling,
logical spiel that condensed: a personal story, the extensive legal research
supporting the change, national trends and tragedies, and names of supportive
groups. Why 2 minutes? That is about the most time I could expect from a
legislator passing by on their way into or out of session.
I created a visual map of the commitment process that was
effective in quickly showing that the proposed language would not change the
process in any way. The many safeguards in place to protect people�s rights
would not be compromised. I learned that opponents would try to kill a bill
simply by creating enough doubt. If they could do that, they wouldn�t even need
to supply concrete reasoning for their position. To counter that, I explained
the current commitment process and criteria for involuntary treatment and how
these create a gap in the law that results in tragedies.
It turned out that educating people was my primary job and
one of the most significant keys to gaining support.
You don�t have to create everything from scratch. The
extensive legal research the
Treatment Advocacy Center provided was the solid footing supporters needed to
confidently attach their name and reputation to the bill. The personal stories
are needed, but they are not enough.
Legislators need to know proposed legislation has been thoroughly
examined from every aspect, including issues of civil rights, due process, and
constitutionality. What other states are doing and why is critical information.
I never wanted this to be �Sheree�s bill�, even though
moving it forward was my personal project. I sincerely wanted stakeholders
across the state, in all areas, to have input. I made that clear in all my
meetings - from presentations to the Police Chief�s Association and the
Sheriff�s Association to one-on-one meetings with states attorneys, mental
health workers, consumers, and family members. Their input made the resulting
bill better.
While still in the early, letter-writing stage, my
boss offered to do anything to help me. I said, �Well, do you know anyone who
is really powerful?� He looked at me awhile and then said, �You are the most
powerful person I know.�
I was stunned. It was so profound and totally challenged my
perspective. I not only remembered his words through this tough process, but
will remember them for life.
I believe the informal hearing I mentioned earlier was an
attempt at intimidation and an effort to kill the bill before it ever got off
the ground. Instead of the intended affect, here�s what I thought afterward: In
this situation, these people have the power and I don�t. But that kind of power
can come and go. My passion will outlast their power.
Probably the most important thing I learned is that personal
passion, directed constructively, is very powerful indeed.
A legislator with a personal stake: Lessons learned in reforming Minnesota law
by Mindy Greiling
Minnesota State Representative Mindy Greiling�s personal
experiences led her to sponsor SF179,
which removed the requirement that danger be �imminent� for emergency response,
and improved the standard for treatment so that a person�s deteriorating
psychiatric condition could be considered. The law also allows lengthened
hospital stays to stabilize a person�s condition as well as timely intervention
with medication. The new law became effective July 2002. She shared some
strategies that worked in Minnesota.
They have first-hand experience and are strongly motivated.
When our son ran into Minnesota�s restrictive civil commitment laws, I was as
enraged as a mother bear whose young is threatened � and terribly fortunate to
be a state legislator myself.
After our family story appeared on the front page of both
Twin Cities newspapers, I was deluged with calls and visits from such folks,
including capitol insiders. Former Senator John Milton became a soulmate in
this battle. I started a database and used it for the duration. Definitely work
bipartisanly.
A key ally was Dr. Charles Schulz, Chair of our University
of Minnesota Department of Psychiatry. He pointed out that treatment lags
result in poorer responses, and that even the most ideal treatments cannot help
if the patient isn�t there.
I was usually able to connect with them more successfully
than folks in Minnesota and received terrific materials. Their Model Law booklet quelled many
foes� best arguments.
Ours consisted of: AFSCME, League of Women Voters, the
Medical Association, Psychiatric Society, National Alliance for the Mentally
Ill, and the State Advisory Council on Mental Health. We neutralized many other
groups, some who originally opposed us.
Mainstream public opinion is with us. We were blessed with
an incredible editorial writer, Kate Stanley, who penned a plethora of
supportive columns in the Minneapolis Star Tribune. She more than earned an
award for her efforts, presented by NAMI at last year�s national convention.
Opponents will be back to try to gut your changes and also
impede implementation.
An advocate: What worked in New York in passing Kendra�s Law
by D.J. Jaffe
D.J. Jaffe, a family member and a board member of the
Treatment Advocacy Center, was instrumental in the passage of Kendra�s Law,
which has proven extraordinarily successful
since it went into effect November 1999.
Laws do not change to provide more humane care for people
with brain disorders. Laws change when the public becomes concerned about their
own safety. While it is true that assisted treatment helps consumers, it is
also true that it keeps the public safer. An act of violence, however horrible,
is an opportunity to jump start reform. Nobody is saying this is right, but it
is true. So you have to be prepared to
use tragedies to educate.
Fact sheets
and newspaper clippings let you put together professional looking kits to
quickly send to the media, legislators and others. One of our fact sheets
listed states that had the law we were trying to enact. Another debunked false information spread
by others. We also had fact sheets on schizophrenia,
lack of insight, violence, efficacy of treatment and
others. We also used newspaper clippings, including �Uncivil Liberties,� and editorials and op-eds
that supported our cause.
The strongest governmental supporters are likely to be those
charged with criminal justice, rather than mental health care. They understand
the consequences of the failure to provide care and how that affects quality of
life issues and crime.
Because laws change in reaction to violence, it is useful to
have the perpetrators and victims of crime on your side. The New York bill
would not have passed without the Webdale, Stevens, and Rivera families, all of
whom were affected by acts of violence by people with mental illnesses.
Spend a lot of time and energy with reporters and editorial
writers. When a tragedy occurs instantly reach out to reporters so their
reporting includes how this law could prevent tragedy. A story is likely to
play out over several days, so don�t think you missed the boat if you weren�t
in the first story.
Do not form a committee or a working coalition. It will suck
up time better spent talking to legislators and the media, who can effect the
change you want. But do create a list of �Supporting
Organizations� that makes others realize the widespread support reform has
and how mainstream it is. In addition to your NAMI affiliate, your list might
include bar, community, sheriff, police, nurse, health care, and other
associations.
It is important to communicate that there is very little
opposition to reform. Continue to remind the public how small and fringe the
opposition is and how large and mainstream the support is.
Local NAMI organizations and individuals were willing and
enthusiastic supporters in New York. Make sure to recognize all the local NAMIs
that support you, not just the state and national NAMI. Use local members to do
the grassroots work, like letter writing.
E-mail is a great way to keep people informed and involved.
Start an e-mail list of reformers. But remember those who don�t have e-mail,
either by using fax or regular (�snail�) mail. Faxes are efficient.
TAC can help with this. Contact editorial writers and ask
for their support. In New York, we got Kendra�s Law endorsed by the
conservative Daily News and New York Post and the liberal New York Times and
Newsday. [Editor�s note: See sample opeds and editorials online at
, in the �General
Resources� section.]
A grieving mother: Passion, persistence, and pals helped
turn tragedy into activism
by Pat Webdale
Kendra�s Law is named in memory of Kendra Webdale. In
January 1999, the 32-year-old Buffalo native was killed after being pushed into
the path of a New York City subway train by Andrew Goldstein, a man with severe
mental illness who had a history of noncompliance with treatment. Kendra�s
family was instrumental in the passage of this law, advocating tirelessly for
reform. Here, Pat Webdale offers some things she learned throughout the
difficult battle for passage.
My daughter Kendra was pushed off of a subway platform into
the path of an oncoming train on January 3, 1999. Her assailant was diagnosed
with schizophrenia and was not taking his medicine. I vowed to do something to
help prevent future tragedies.
Kendra�s death was high profile, one of 11 million subway
riders trying to make her way in a big city. Would a law named in her honor
bring peace to another family?
Know your subject
We hooked up with the experts, the people at the Treatment
Advocacy Center and NAMI. My daughters purchased Out of the Shadows and
Surviving Schizophrenia by TAC president Dr. E. Fuller Torrey. We read about
the loss of a family member to mental illness and about the system; navigating,
negotiating, the throwing up of hands in total disillusionment at its
inadequacies. The mentally ill had to live on the street, be thrown in jail or
become dangerous to self or others in order to receive treatment.
Watch for opportunities
Only five days after Kendra died, I wrote a letter to Eliot
Spitzer, the Attorney General of New York State, challenging procedures in
which his office would no longer review OMH discharges. New York was under fire
after Judith Scanlon, a psychiatric nurse and intensive case manager, had been
murdered by her client while making an unaccompanied home visit. My daughter
Krista sent a letter to Governor Pataki, saying, in part: �When Mrs. Scanlon
started her psychiatric nursing career, the Buffalo Psyche Center had 3,000
beds and today there are 260 beds. We are releasing far too many patients into
unsupervised environments where they are unable to function.�
The attorney general was about to introduce an assisted
outpatient treatment bill to help people with serious brain disorders to obtain
treatment. He suggested the law be named to honor Kendra.
Ask questions
Suzanne, a mental health professional, questioned the bill �
would it work? She opposed putting Kendra�s name on a law that would have no
teeth. In response, the attorney general allowed her to work closely with his
office as the bill was drafted.
Be persistent
We traveled to Albany seven times and met with the attorney
general three times in Buffalo. We endured traffic jams, getting lost, bad
meals, late nights and unkempt hotels.
We called and wrote personal letters to the senate, the
assembly and the governor almost daily. I spoke to the NAMI board of New York,
to ask for its support for assisted outpatient treatment.
Be creative
We approached the matter with a bipartisan attitude. Copyboy
donated 1,000 business cards with Kendra�s picture on it to be distributed
statewide � the cards read �Pass Kendra�s Law� with phone numbers of strategic
legislators.
Be passionate � and compassionate
Kendra is grieved everyday and we understand that the
mentally ill are also grieved and lost to their families. Other passionate
people were definitely a huge help � for instance, all the people who made
phone calls, who knows how many of them had a mentally ill family member?
Since it was passed, Kendra�s Law has had a proven
track record and has changed the system in substantial ways in New York. We are
confident that our passionate crusade is saving and improving lives.
|
KENDRA�S LAW SAVES LIVES AND MONEY In a little less than three years after implementation,
2,433 people received assisted outpatient treatment (AOT) orders. After six
months in AOT, the incidence of hospitalization, homelessness, arrest, and
incarceration had all declined significantly from their pre-AOT levels. In
fact, of those in the program: -������� 77% fewer
experienced hospitalization; -������� 85% fewer
experienced homelessness; -������� 83% fewer
were arrested; and -������� 85% fewer
were incarcerated. There were also significant reductions in harmful
behaviors among participants, such as harm to self (45% reduction) and harm
to others (44% reduction). New York's State Office of Mental Health, An Interim Report on the Status of Assisted Outpatient Treatment, Jan. 1, 2003. |
by Tom Rodd, Senior Law Clerk, West Virginia Supreme Court
of Appeals
In 1999, the West Virginia Supreme Court of Appeals formed a
Mental Hygiene Reform Commission to look at West Virginia�s laws and procedures
governing involuntary hospitalization. A number of the Commission�s recommended
improvements were contained in Senate Bill 193, which went into effect July
2001. Tom Rodd and his boss, Supreme Court Justice Larry Starcher, continue to
push the legislature for a law like New York�s Kendra�s Law, a law that would,
as Tom said in a recent newspaper editorial, �explicitly authorize some of our
state�s mental-hygiene commissioners, using full due process, to require people
to take medications, especially when their repeated noncompliance with
prescribed medication has led to repeated involuntary hospitalizations based on
their dangerousness to self or others.� Tom highlights some things they have
learned so far.
In West Virginia, the State Supreme Court of Appeals
administers a system of �mental hygiene� commissioners who must hold a hearing
to authorize all involuntary hospitalizations for treatment of mental illness
and addiction. In 1999, the court convened a Mental Hygiene Reform Commission
to consider improvements to our system. We held hearings statewide and brought
together stakeholders for a series of meetings and discussions. The Commission
issued a report, which is on the web at http://www.state.wv.us/wvsca/mentalhyg/finalmh.pdf.
We found it relatively easy to get consensus on the need to
clarify the legal standard used for commitment decisions to include �need for
treatment,� and also to improve flexibility in the system � and with this
consensus, our statutes were successfully modified in this regard. There was
also support in the Commission process for removing the need to always have a
hearing, and for authorizing court orders that explicitly require people to get
outpatient treatment. But there was also opposition to these proposals, so they
did not succeed legislatively. We did achieve consensus and modify the law to
let court officers approve �voluntary treatment agreements,� and to allow
release from a hospital upon the condition of complying with treatment. These
options, if utilized, can help more people get effective outpatient treatment,
as well as ease the process of hospitalization when necessary.
The Commission process was challenging and engaging. The
enhanced statewide understanding of the issues, and the statutory changes that
flowed from the process, were real accomplishments. But in order to get
effective, least-restrictive and community-based treatment to people who need
it, we clearly need more changes in our law. Several factors combine to impede
the progress of change in this area. State medical authorities fear that
streamlining procedures, combined with the �need for treatment� standard and
the supervision and monitoring inherent in orders relating to outpatient
treatment, will add burdens to a state mental illness treatment system that is
already financially overloaded. Also, those who oppose all forms and degrees of
compulsion in treating mental illness tend to oppose change, as do those who
are accustomed to and/or have vested interests in current structures and
procedures.
The deliberate, �let�s reason together� consensus approach
of the Commission process may have reached its limits of effectiveness. Further
change may be sparked by tragedies. Just last month, here in Charleston (our
state capitol), a man who has a chronic mental illness and problems taking
prescribed medicine killed his mother/caretaker, a 58-year-old librarian.
Hopefully recognition of the flaws in the system � that contribute to this sort
of incident � will lead to the additional changes in the law that are
necessary, and in the long run, inevitable.
A national leader and advocate: Tenacity prevails: Never give up
by Carla Jacobs
California law kept Carla Jacobs and her husband, Brian,
from getting mental health intervention for Brian�s sister, despite the fact
that she did not believe she was ill. The struggle came to a terrible end when
Brian�s mother was killed by her delusional daughter. Carla�s grief led her to
become one of the nation�s most effective advocates for changing treatment
laws.
For four years, Carla supported the efforts of California
Assemblymember Helen Thomson, a former psychiatric nurse, who introduced a
string of reform measures that culminated in the passage of Laura�s Law
(AB 1421).
Helen Thomson introduced a string of reform bills over three
years. At first, it was discouraging to have to keep coming back, but then we
discovered that with each subsequent bill, people were more informed about
mental illnesses, more understanding of the need to help people who lack
insight, more aware of how this bill would not compromise civil rights but
would, in fact, protect them. When AB 1800 � our first attempt � did not become
law, we realized that the bill had made a tremendous impact not only as an
education tool but on the advocates who supported it � we learned that we could
galvanize the media, legislators, and public officials behind common-sense
proposals.
The second time we introduced a bill in California, the
legislature passed AB 1424, requiring courts making commitment determinations
to consider past psychiatric history and family input. Unbelievably, most
courts had previously refused to examine such evidence. This was a tremendous
improvement on current law and helped many people � but it was far short of our
ultimate goal of complete reform. We celebrated, then woke up the next morning
to try again, knowing the law was a little better. Today, with Laura�s Law on
the books, the battle continues � this time to get counties to implement it and
people to use it.
Registering support for a bill requires little effort. A
sheet of letterhead, a stamped envelope, and a few sentences including the bill
number are all it takes. Yet a supporter list can be an exceptional asset for a
proposed measure. We ended up with almost 80 organizations
supporting our reform effort.
In the course of our efforts in California, we encountered
many situations where a hearing time was changed or location moved, or a
hearing delayed because of some technical glitch � in one instance, the Senate
actually left a week early for its summer recess, leaving our bill high and
dry. These can seem like logistical points only, but delays offer additional
opportunities to lobby, write letters, make calls, or add supporters. And
missing information on a hearing time or location changing might mean witnesses
go to the wrong place and their testimony is never heard. So make sure someone
is watching not only the clock, but also the calendar.
It is critical to write letters to legislators sharing
personal stories and urging support. (In our final push, more than 1,000
individual registered their support for AB 1421, over three times those
opposed.) But there is still more writing to do.
After each meeting, hearing, phone call, or accidental
conversation in the hallway, send a thank-you note. Thank the people who
support you and give them more reason to do so. Thank the people who are
opposed for caring enough to listen, then explain why they should change their
mind. Don�t be disparaging of people who are against reform, just assume that
they need more information. Legislators need to know how closely their
constituents follow these reform measures.
Remember the bill you are supporting today will not be the last one
vital to people with mental illness.
THE COURTS
Five years with hope: Thirty years of despair
by Treatment Advocacy Center Executive Director Mary T.
Zdanowicz
A quarter century after a federal court in Wisconsin
overturned her civil commitment to outpatient treatment, the Milwaukee Journal
Sentinel reported that Alberta Lessard �is not happy with the legacy of her
lawsuit. She thinks life has gotten worse, not better, for the mentally ill
since her lawsuit began in October 1971.� In the five years that the Treatment
Advocacy Center has been in existence, we have seen indications that the courts
have a much better understanding of the realities of severe mental illnesses,
but we also know that our work is far from done.
We have come a long way since Lessard v. Schmidt1, the 1972 case that introduced the concept of imminent
danger as a prerequisite to assisted treatment. Each year, we have had
encouraging indications from court decisions.
1998
Utah court: Treatment is not punishment, intervention before danger is
humane
While the Lessard court interpreted danger strictly as an
�extreme likelihood that if the person is not confined he will do immediate
harm to himself or others,�2 twenty-six years
later, a federal court in Utah issued an important decision favoring
needs-based treatment for those suffering from severe mental illnesses in
Jurasek v. Utah State Hospital3. The court
ruled that a state psychiatric hospital could order involuntarily treatment for
a mentally ill patient who was �gravely disabled� and incompetent to make
medical decisions. �Gravely disabled� as defined in the Utah policy includes a
person who suffers from a mental disorder who �manifests, or will manifest,
severe deterioration in routine function evidenced by repeated and escalating
loss of cognitive or volitional control over his or her actions and is not
receiving such care as is essential for his or her health or safety�4. The court found that this definition incorporates the
concept of �danger to self� and therefore is consistent with prior U.S. Supreme
Court decisions authorizing administration of medication over objection for
individuals who �pose a likelihood of serious harm� to themselves or others.5 The Utah court also clarified that an individual who
�lacked the ability to engage in a rational decision making process regarding
the acceptance of mental treatment� was legally incompetent to make medical
decisions on his own behalf.6 The Utah decision
supports early treatment intervention for an individual who does not recognize
that they need treatment and whose condition will deteriorate to a harmful
state without treatment.
Perhaps
one of the most significant and encouraging aspects of the decision is that the
court explicitly states that it is based on �the fact that treatment with
psychotropic drugs is not punishment.�7 This
may be an indication that courts are beginning to recognize that it is more
humane to alleviate devastating symptoms of these illnesses by administering
treatment than to withhold medication from a person who is refusing because
they lack insight into their illness and therefore lack the capacity to make an
informed decision.
1999 U.S.
Supreme Court: Warns against massive deinstitutionalization, lack of treatment
leads to peril
In Olmstead v. L.C. ex rel.
Zimring8, the U.S. Supreme Court decided a case
concerning a state�s obligation to provide community mental health treatment to
people institutionalized with severe mental illnesses. Although the Court
imposed certain qualifiers on a state�s responsibility in this regard, it also
made clear the decision was not a call for massive deinstitutionalization.
�[T]he ADA is not reasonably read to impel States to phase out institutions,
placing patients in need of close care at risk.�9�� In his concurring opinion in Olmstead,
Justice Kennedy quoted TAC president Dr. E. Fuller Torrey:
For a substantial minority �
deinstitutionalization has been a psychiatric Titanic. Their lives are
virtually devoid of �dignity� or �integrity of body, mind and spirit.�
�Self-determination� often means merely that the person has a choice of soup
kitchens. The �least restrictive setting� frequently turns out to be a
cardboard box, a jail cell, or a terror-filled existence plagued by both real
and imaginary enemies.10
Justice Kennedy, in his own words, displayed how deeply he
understands the dilemma of untreated mental illness:
��������
It must be remembered that for the
person with severe mental illness who has no treatment, the most dreaded of
confinements can be the imprisonment inflicted by his own mind, which shuts
reality out and subjects him to the torment of voices and images beyond our own
powers to describe. �
��������
It is a common phenomenon that a
patient functions well with medication, yet, because of the mental illness
itself, lacks the discipline or capacity to follow the regime the medication
requires.11
This landmark case was especially extraordinary because this
U.S. Supreme Court justice recognized that severe mental illnesses are
themselves confining.
The judicial response to Kendra�s Law in New York has
provided some of the most encouraging evidence that the judiciary has a
profound understanding of the realities of untreated mental illnesses. Kendra�s
Law was enacted in 1999 after a man with untreated schizophrenia pushed
32-year-old Kendra Webdale to her death in front of a subway train. It allows
court-ordered outpatient treatment for individuals with a history of treatment
noncompliance and revolving door syndrome.
The court upheld Kendra�s Law in the first of several
unsuccessful challenges in the case In re Urcuyo12,
saying:
Kendra�s Law is a means by which
patients who have such a history can be discharged to the community with the
supervision and assistance they need to avoid decompensation and
rehospitalization.�13
Kendra�s Law provides the means by which society does not
have to sit idly by and watch the continuous cycle of decompensation,
dangerousness and hospitalization. Moreover, Kendra�s Law is narrowly tailored
to achieve these goals within the framework of the involuntary and emergency
commitment procedures of the Mental Hygiene Law.14
Another trial court reached similar conclusions in another
unsuccessful challenge to Kendra�s Law in In re Martin15.
The judge in the Martin case noted that:
��������
Kendra�s Law is a response by the Legislature to a tragic situation which had its origins in a serious void in New York�s system of caring for the mentally ill. That void arose from the fact that certain patients, who no longer posed a danger to themselves or others while in hospital and accepting medication and treatment, stopped taking their medication upon release. Thereupon, these patients would once again constitute a danger to themselves or others, sometimes with tragic results.
2002
Wisconsin: Courts can and should intervene when recidivists lack insight and
need treatment
Perhaps the most far-reaching decision came in July 2002
from the Wisconsin Supreme Court, the state where the Lessard case originated
thirty years earlier. In re Dennis H.16
involved a challenge to Wisconsin�s so-called �fifth standard� for assisted treatment,
which is among the most progressive, need-based treatment standard in the
country. The fifth standard allows a person to be placed in treatment when if
left untreated, he or she will �lack services necessary for his or her health
or safety and suffer severe mental, emotional or physical harm that will result
in the loss of the individual�s ability to function independently in the
community or the loss of cognitive or volitional control over his or her
thoughts or actions.�17
The court not only unanimously upheld the standard, it
demonstrated just how much courts have learned in the 30 years since the
decision Alberta Lessard laments today. The court wrote:
��������
Mentally ill persons who meet the
fifth standard�s definition are clearly dangerous to themselves because their
incapacity to make informed medication or treatment decisions makes them more
vulnerable to severely harmful deterioration than those who are competent to
make such decisions. The state has a strong interest in providing care and
treatment before that incapacity results in a loss of ability to function.18
��������
The fifth standard�s focus is on
dangerousness to self�dangerousness of a particularly insidious nature because
it is chronic and cyclical (measured by treatment history and recent acts or
omissions), and brought on by mental illness that produces an incapacity to
make medication or treatment decisions as well as a substantial probability of
an incapacity to care for oneself.19
��������
Moreover, by requiring
dangerousness to be evidenced by a person�s treatment history along with his or
her recent acts or omissions, the fifth standard focuses on those who have been
in treatment before and yet remain at risk of severe harm, i.e., those who are
chronically mentally ill and drop out of therapy or discontinue medication,
giving rise to a substantial probability of a deterioration in condition to the
point of inability to function independently or control thoughts or actions.20
The fifth standard applies to
mentally ill persons whose mental illness renders them incapable of making
informed medication decisions and makes it substantially probable that, without
treatment, disability or deterioration will result, bringing on a loss of
ability to provide self-care or control thoughts or actions. It allows the
state to intervene with care and treatment before the deterioration reaches an
acute stage, thereby preventing the otherwise substantially probable and
harmful loss of ability to function independently or loss of cognitive or
volitional control. There is a rational basis for distinguishing between a
mentally ill person who retains the capacity to make an informed decision about
medication or treatment and one who lacks such capacity. The latter is
helpless, by virtue of an inability to choose medication or treatment, to avoid
the harm associated with the deteriorating condition.21
As if to remind us that we must remain vigilant, in 2003 the
Oregon Court of Appeals overturned a commitment order for a woman with
untreated bipolar disorder who rode her bicycle naked in near freezing weather.
Terri Webb�s attorney�s argued In Re Webb22,
that she rode naked to educate people about legalizing public nudity, that cold
weather did not bother her, and that she was not afraid of being assaulted
while riding naked. Because she had never been assaulted while riding naked and
it was not clear whether she rode long enough in the cold to suffer exposure,
the appeals court did not agree with the trial court that she put herself in
danger23. The danger was not real or
immediate enough for the court. If some day Ms. Webb finally gets the treatment
she needs, she may discover that she feels the same about her appeal as Alberta
Lessard. This case imperils the thousands who will not get the treatment they
so obviously need until informed courts are more prevalent.
There is evidence, in these cases and others, that the trend
in courts is toward humane understanding of the effects of a severe mental
illness not only� on the general community,
but most importantly, on the people who are ill.
1 Lessard v. Schmidt, 349 F.Supp. 1078,
(E.D.Wis.1972), vacated and remanded on other grounds, 421 U.S. 957, 95 S.Ct.
1943, 44 L.Ed.2d 445 (1975), reinstated 413 F.Supp. 1318 (E.D.Wis.1976)
2 Lesard, 349 F.Supp. at 1093.
3 Jurasek v. Utah State Hospital, 158 F. 3d 506 (10th
Cir. 1998).
4 Id. at 511.
5 Id. at 512.�
6 Id. at 513.
7 Id. at 511.
8 Olmstead v. L.C. ex rel. Zimring, 527 U.S. 581
(1999).
9 Id. at 604.
10 Id. at 609 (Kennedy, J.,
concurring in the judgment).
11 Id.
12 In re Urcuyo, 714 N.Y.S.2d 862
(N.Y. Sup. Ct. 2000),
13 In re Urcuyo, 714 N.Y.S.2d 862,
872 (N.Y. Sup. Ct. 2000).
14 Id. at 873.
15 In re Martin, N.Y. L.J., Jan 9,
2001, at 25 (N.Y. Sup. Ct., 2001).
16 In re Dennis H., 647 N.W.2d 851
(2002).
17 Wis. Stat. � 51.20(1)(a)2.e
(1995).
18 In re Dennis H., 647 N.W.2d at
862.
19 Id. at 860.
20 Id. at 863.
21 Id. at 861-2.
22 In Re Webb, 63 P.3d 1258 (Or. Ct.
App. 2003).
23 Id. at 1261.
Studies bolster efforts to educate and legislate
Studies and data from states using assisted outpatient
treatment (AOT) prove that AOT is effective in reducing the duration and
incidents of hospitalization, homelessness, arrests and incarcerations,
victimization, and violent episodes. AOT also increases treatment compliance
and promotes long-term voluntary compliance.
A report
by the New York Office of Mental Health on the first three years of
implementation of Kendra's Law indicated that of those participating, 77
percent fewer experienced hospitalization (87% versus 20%). In a North Carolina
study, long-term AOT reduced hospital admissions by 57 percent and length of
hospital stay by 20 days compared to individuals without court-ordered
treatment. The results were even more dramatic for individuals with
schizophrenia and other psychotic disorders for whom long-term AOT reduced
hospital admissions by 72 percent and length of hospital stay by 28 days
compared to individuals without court-ordered treatment.
In New York, the number of people experiencing homelessness
was reduced by 85 percent, from 21 percent of participants prior to the onset
of a court order, to 3 percent after being in the program.
Arrests for those Kendra�s Law�s participants were reduced
by 83 percent, plummeting from 30 percent prior to the onset of a court order
to only 5 percent after participating in the program. A North Carolina study
found that for individuals who had a history of multiple hospital admissions
combined with arrests and/or violence in the prior year, long-term assisted
outpatient treatment reduced the risk of arrest by 74 percent. The predicted
risk of being arrested for individuals in long-term AOT was 12 percent,
compared with 47 percent for those who had no AOT.
For those in the first three years of Kendra�s Law in New York , data indicate that incidents of harm to others was reduced by 44 percent. The North Carolina study found that long-term AOT combined with routine outpatient services (three or more outpatient visits per month) was significantly more