REMINDER: AUGUST is a great time to meet with your U.S.
Representative in his/her District office near your home to seek
support for H.R. 3995. Call to make an appointment today.
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VOR Weekly E-Mail Update
July 11, 2008
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TABLE OF CONTENTS
1. July 22 is Fragile X Awareness Day – About Fragile X
2. Book Review: Wrong Prescription - How the emptying of
state-run mental hospitals produced a social disaster
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1. July 22 is Fragile X Awareness Day – About Fragile X
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JULY 22, 2008 IS FRAGILE X AWARENESS DAY
Source: National
Fragile X Association
Fragile X Syndrome (FXS), the most common cause of inherited
mental impairment. This impairment can range from learning
disabilities to more severe mental retardation. FXS is the most
common known cause of autism or "autistic-like" behaviors.
Symptoms also can include characteristic physical and behavioral
features and delays in speech and language development.
Fragile X is a family of genetic conditions, which can impact
individuals and families in a wide variety of ways. These
genetic conditions are related in that they are all caused by
gene changes in the same gene, called the FMR1 gene. Some
individuals experience significant challenges because of the
effects of fragile X, while the impact on others is so minor
that they will never be diagnosed.
Males and females exhibit quite different physical, cognitive,
behavioral, sensory, speech and language impacts of fragile X
syndrome. In general, females with fragile X either do not have
the characteristics seen in males, or the characteristics show
up in a milder form.
The difference is probably due to the fact that females have two
X chromosomes instead of the one that males carry. As a result,
females who have fragile X, have two sets of instructions for
making FMRP (fragile X mental retardation protein), one that
works and one that doesn't. Males with fragile X have only one X
chromosome with its nonfunctioning FMR1 (fragile X mental
retardation 1) gene. It appears that females are able to produce
enough of the FMRP to fill most of the body's needs, but not
all.
Fragile X can be passed on in a family by individuals who have
no apparent signs of this genetic condition. In some families a
number of family members appear to be affected, whereas in other
families a newly diagnosed individual may be the first family
member to exhibit symptoms.
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2. Book Review: Wrong Prescription - How the emptying of
state-run mental hospitals produced a social disaster
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By PAUL MCHUGH
June 14, 2008; Page W10
Wall Street Journal
About the author: Dr. McHugh is a University Distinguished
Service Professor of Psychiatry at Johns Hopkins University. His
book "Try to Remember: Psychiatry's Clash Over Memory, Meaning,
and Mind" will be published in October.
The Book: The Insanity Offense, By E. Fuller Torrey, Norton,
265 pages, $24.95
Summary: This book looks at the deinstitutionalization of
the mentally ill, an experiment that also failed.
There are times and situations that call for prophets. Not
fortunetellers or soothsayers, but biblical prophets like Amos
or Jeremiah who furiously proclaim the old truths, puncture our
pretensions and predict from current tribulations worse to come
if what lies deeper than sin -- idolatrous worship of false gods
-- continues. E. Fuller Torrey, a psychiatrist who cares for
patients with schizophrenia and manic-depression, is to my mind
the doctor nearest in character to an ancient Hebrew prophet.
In "The Insanity Offense," he describes the grim consequences --
in death, violence and suffering -- of laws that, beginning in
the late 1960s, released the seriously mentally ill from the
oversight of state mental-health services and permitted them to
wander away from the treatment and protection they desperately
needed. Dr. Torrey identifies an unholy alliance of rash
conservatives seeking to save public money by abandoning a
traditional state obligation and self-righteous liberals
defining the neglect of these patients as "defending their civil
rights." We need prophets to confront such alliances -- anything
less will fail -- and in this splendid book we hear one.
"The Insanity Offense" is "about one of the great social
disasters of recent American history," Dr. Torrey writes. "It
began within the lifetime of many of us, is continuing, and
today affects approximately 400,000 individuals and their
families. In the annals of twentieth-century American history,
it should be included among the greatest calamities."
Some of the background should be familiar. From the mid-19th
century right up until the 1960s, state governments accepted
responsibility for the care and treatment of the seriously
mentally ill. This arrangement came about because in the 1840s
such civic crusaders as Dorothea Dix (in what may be the first
piece of social research ever conducted in America) revealed the
special ordeal of delusional and distressed mental patients:
They tended to lose their way in life and, because of their
unpredictable and occasionally violent propensities, filled the
country's jails, workhouses and shelters, where they often
suffered ugly mistreatment. Dix reported to the Massachusetts
legislature in 1843 on "the present state of Insane Persons
confined within this Commonwealth, in cages, cellars, stalls,
pens! Chained, naked, beaten with rods, and lashed into
obedience!"
The state mental-hospital system was founded to care for these
patients. Though psychiatrists before the mid-20th century could
offer them little more than shelter and protection, even that
modest level of care was far from inconsequential: It kept the
patients and the community from harm. State mental hospitals
stood as beacons of a public obligation.
By the 1950s, though, these hospitals had become overcrowded and
were themselves prompting calls for reform. It was a missed
opportunity: Much could have been accomplished if psychiatric
leaders at the time had moved quickly to repair a failing system
and to educate the public about serious mental illness. The
discovery of "anti-psychotic" phenothiazines and
"anti-depressants" meant that the symptoms of these patients
could be greatly relieved and their dangerous behavior much
reduced if such medications were used properly. Steps could have
been taken to address the concerns of the growing civil-rights
movement and ensure that long-confined patients were not victims
of neglect. And the increasing zeal for fiscal restraint and tax
reform in state government should have been met head-on with a
frank discussion about the costs and benefits of shouldering
responsibility for some of our most vulnerable citizens.
Instead, psychiatric leaders at the time offered little or no
defense. Worst of all, they failed to explain why state
responsibility should continue, no matter what changed in the
settings for patient services, so that the mentally ill would be
monitored and not slip from sight. Patients with schizophrenia
and manic-depression, it should have been explained, often lack
any sense of their own mental disorders and so need regular
supervision to sustain their treatment.
Why the psychiatric establishment failed to meet these
challenges is not obvious. Many doctors wilted before criticism
of state-hospital services and mustered weak arguments to defend
them. Many others at the time were absorbed in the psychotherapy
of patients with milder mental disorders and had little interest
in the seriously mentally ill, whose care they were happy to
leave to the state and others. As a result, laws were passed in
the late 1960s with the direct intent of emptying state
hospitals, releasing the patients and saving money --
consequences be damned.
The new laws deprived psychiatrists of the authority to hold
patients under surveillance. In the past, psychiatrists could
keep patients in a hospital if they were "of such mental
condition . . . [as being] in need of supervision, treatment,
care, or restraint." Now patients could not be held unless
"immediately" or "imminently" dangerous to themselves or others.
The harrowing effects were evident almost immediately, and Dr.
Torrey recounts them in vivid detail in "The Insanity Offense."
First he offers plenty of statistics to indicate the state of
the problem as it exists today -- citing, for instance, the
number of seriously mentally ill who are in prison (218,000) or
homeless (175,000) at any given time. But just as "numbers are
too abstract" to convey the magnitude of a large-scale tragedy
such as an earthquake or flood, he says, the true horror that
resulted from the "deinstitutionalization" of the seriously
mentally ill is best conveyed by individual stories.
Dr. Torrey recounts murder after murder by mentally ill
patients, each of whom was actively avoiding treatment. We learn
about William Bruce, who was diagnosed with schizophrenia and
hospitalized but refused to take his medication. His mother
"tried to get help everywhere," a friend related, but "at each
phase she was turned away because he never hurt anyone." Bruce
bludgeoned his mother to death in 2006 and slit her throat.
The most awful example was the murder last year of 32 students
and faculty at Virginia Tech by Cho Seung-Hui, a 23-year-old
student who had been court-identified as in need of treatment
but allowed by the college to attend classes because the school
would not treat mentally ill students -- even those suffering
from schizophrenia -- unless the students requested it. Mr. Cho
could not be involuntarily committed because he was not an
"imminent danger" to himself or others and was not
"substantially unable to care for himself." As Dr. Torrey
writes: "This is one of the most stringent state commitment
statutes in the United States and another example of how changes
in mental illness laws in the 1970s and 1980s continue to have
real consequences."
Given the difficulty of committing the seriously mentally ill
for involuntary treatment, our jails and prisons have become de
facto mental institutions. Dr. Torrey's data indicate that more
than 30% of inmates are mentally ill. He also describes the
abuse they suffer in these brutal environments and the increase
in suicides by mentally ill prisoners. The hellish scenes
described by Dorothea Dix in 1843 have returned -- with a
vengeance, given the huge increase in the American population
since the mid-19th century.
What is to be done? "The Insanity Offense" calls for a restoring
of some central state responsibility for these patients in ways
that would permit monitoring them regularly, keeping them on
their medications and insisting on a protected-care setting if
they relapse. It is not necessary to reopen all the old state
hospitals: The programs that are needed could be carried out in
clinic offices with backup, shorter-stay hospital beds.
Dr. Torrey points to successes in a few states. He particularly
endorses a program in Wisconsin that provides outpatient
tracking and regular medication treatment along with resources
for ready involuntary commitments when either treatment fails or
the patient becomes unable to control behavioral outbursts.
The issue is whether the public can be rallied to support these
reforms. One obstacle: Legions of lawyers are opposed to such
changes, claiming that they are infringements on "civil
liberty." More than a few such lawyers are heard to proclaim
that the violence and murder committed by mentally ill people
are "the price we must pay for democracy." Here is idolatry of
the most blatant kind -- with human sacrifice, no less -- and
hence our need for the fury of a prophet.
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Tamie Hopp
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