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Sent: Friday, March 22, 2002 3:15 PM
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Subject: TX Case on Disabled Children's Right to Life

JUSTICE FOR ALL -- A Free Service of the
American Association of People with Disabilities
www.aapd-dc.org     www.jfanow.org

"TX Court Case on Right to Life of Disabled Children"

Bob Kafka of Texas ADAPT <[log in to unmask]> shares the
following summary of an upcoming Texas Supreme Court Case,
Sidney Ainsley Miller, et al v. HCA, Inc.  The case is
about whether Sidney Miller should have been allowed to die
by withholding medical treatment.  Sidney's parents sued
the hospital for providing standard care that enabled
Sidney to survive, arguing that their child represented
"wrongful life."

Twenty years ago, the case of Phillip Becker drew national
attention as parents of a child with Down's Syndrome chose
to let their baby starve to death instead of providing a
life-saving medical treatment.  The courts upheld the parents'
decision to laid their son die.  Conservative columnist
George Will wrote: "The freedom to kill inconvenient life
is being extended beyond fetal life to categories of
infants such as Down's syndrome babies." "My aim is to
stress this," he said elsewhere: "the idea that the value
of human life varies with intelligence is an idea at war
with our civilization's core belief in the intrinsic and
equal value of lives."

An Op-Ed by Colleen Horton follows, about her experience with a
child similar in age to Sidney Miller.

Jonathan Young, JFA Editor

===============================

Summary of the Issues Addressed
in the Amici Curaei on Texas Supreme Court Case No. 01-0079
Sidney Ainsley Miller, et al v. HCA, Inc.

National Groups:  Not Dead Yet, ADAPT, The Arc of the
United States, United Cerebral Palsy Associations, TASH,
American Association of People with Disabilities, World
Institute on Disability, Center for Self-Determination,
Center for Housing and New Community Economics, Advancing
Independence: Modernizing Medicare and Medicaid

Texas Groups: The Arc of Texas, United Cerebral Palsy
Association of Texas,  Texas Advocates Supporting Kids with
Disabilities, Coalition of Texans with Disabilities, Texas
Association of Centers for Independent Living, Texas Civil
Rights Project, Houston Center for Independent Living,
Brazoria Country for Independent Living, ABLE Center for
Independent Living, Austin Resource Center for Independent
Living, VOLAR.

This case is about:

* Disability discrimination -- not medical malpractice, law
of negligence, advance directives or validity of consent;

* Whether Sidney Miller, as a child with possible
disabilities, had the right to live and should be living
today;

* Whether medical treatment can be withheld from a
premature infant at birth SOLELY because the infant may be
or become disabled;

* Effect on thousands of newborns who are regarded as
having or have disabilities;

* Effect on how society values millions of people with
disabilities like Sidney Miller; and

* A medical and parental assessment of a newborn's
potential quality of life biased by the perspective of a
society that devalues the worth of children and adults with
significant disabilities.

* This case is about discrimination based on disability.


Four major areas of focus in the brief:

1. Medical treatment discrimination against children with
disabilities is widespread.

2. Child Abuse Prevention and Treatment Act would have been
violated if hospital had withheld appropriate medical
treatment.

3. American Medical Assn's ethical requirements would have
been violated if hospital had withheld appropriate medical
treatment.

4.  Section 504 of the Rehabilitation Act of 1973 would
have been violated if hospital had withheld appropriate
medical treatment.

For more information: Bob Kafka   512/431-4085 or 512/442-
0252
For legal info on amici brief:  Steve Gold     215/627-7100
For legal info on case:  John Serpe, Richard Sheehy, and
Mark Bono 713/951-1000


CONCLUSION

        The amici strongly urge this Court affirm the
appellate court decision and signal, as forcefully and
clearly as possible, that disabled children's lives are as
valuable as nondisabled children's lives.  This Court must
hold that all appropriate and necessary medical treatment
available to nondisabled children must also be provided on
an equal basis to children born with potential or actual
disabilities.

        For children without disabilities, the rights of
parental consent are not absolute.  The amici ask for equal
protection of newborns and infants with disabilities under
the Child Abuse Prevention Act and Section 504 of the
Rehabilitation Act of 1973.

        The amici represent hundreds of thousands of
individuals with disabilities and parents of children with
disabilities who have direct personal experience with the
complex relationship and tensions that exist between
physicians and parents when newborns have or may have a
disability.  Society's stigma of persons with disabilities
frequently results in physicians making low quality-of-life
predictions that are erroneous and assessments that often
result in decisions to withhold medically indicated and
appropriate treatment.

        Most adults with disabilities, including those who
have had a disability since birth, choose life and have
quality in their lives.  Most parents of children with
disabilities value and believe their children's lives have
quality.

        The amici want this Court to hear from children and
adults with disabilities who received the medical treatment
they needed to survive.  In fact, it should be obvious that
a more authoritative source could not be found.  We offer
our perspective as people with disabilities and family
members to this Honorable Court.

        The amici are living evidence that disability has
value in our society. We wish to assert in the strongest
possible terms our disagreement with a "wrongful life" rule
of law and our rejection of society's prevalent judgment of
our lives, "better dead than disabled."

        We represent people with disabilities of all ages and
families of children with disabilities, throughout Texas
and across the nation, and we call upon this Court to
unequivocally affirm the equal value of our lives under the
law.

====================

NO SUCH THING AS "WRONGFUL LIFE"

"WRONGFUL LIFE."

If every there was an oxymoron, this has to be it.

On April 3rd, the Texas Supreme Court will review a Texas
Appeals Court decision  (Sidney Ainsley Miller vs. HCA -
No. 01-0079) involving a claim that the life of an eleven-
year-old girl named Sidney Miller is "wrong."   The
original complaint alleges that  the hospital that cared
for Sidney when she was born and kept her alive should not
have followed accepted medical protocol based on the fact
that Sidney had the potential for developing disabilities.

What is so appalling about this is that "wrongful" is based
on the fact that Sidney has disabilities.  How this
translates is that children with disabilities, including my
eleven-year-old daughter, aren't worth saving, aren't worth
what children without disabilities are worth.  How can this
be?  What has happened to us as a society that we are
actually attempting to define the value of a child's life,
and by that definition decide whether a child is allowed to
live or die.  When did we become so arrogant that the
right of a child to receive standard medical care, the
right of a child to live, is based on the possibility that
he or she may have a disability and the challenges those
disabilities may present.

Sorry folks, but life isn't about perfectionism and it
isn't about convenience.  The staff at the hospital that
cared for Sidney when she was born did not take
"extraordinary measures" to save her life.  They simply
provided her the care that they would provide any premature
infant.  They didn't discriminate based on a potential for
disability.

Sidney was born alive and viable.  It wasn't until almost
two weeks after her birth that she had a brain hemorrhage
that caused her disabilities.  There is no claim of
malpractice, no claim of negligence - the hospital has been
sued for providing the initial care that kept Sidney alive.
If the Appeals Court decision to reverse the District Court
award of almost $50 million to the parents for "wrongful
life" is not upheld, hospitals will be in a very
precarious position.  If they provide care according to
normally accepted standards, they risk "wrongful life"
suits.  If they fail to respond and do not provide
treatment, they risk malpractice.  They simply can't win.
Nor do their patients - children with disabilities.

There's much more to this, however, than the legal battle
and the multi-million dollar award.  It's about what we
value and respect.  It's about the slippery slope that this
would create.  It's about allowing arbitrary decisions
about which child gets to live and which child will die.
What kind of society have we become when we begin measuring
the value of the life of a child by what could happen in
the future?

Yes, raising a child with disabilities is very different
and often more challenging and more costly than caring for
a child without disabilities.  The value of my daughter's
life, however, should in no way be diminished because of
the challenges her disabilities present.  The gifts she
brings to this world should be treasured and her life
should be celebrated.  There are literally hundreds of
thousands of children with disabilities in Texas.  The
decision of the Texas Supreme Court will not simply be a
reflection on Sidney's life, it will reveal how we value
the lives of all of our children with disabilities.  Don't
ever try to tell me that my daughter's life is "wrong."

Colleen Horton
Children's Policy Specialist
Texas Center for Disability Studies
University of Texas at Austin

###

=====================

There's strength in numbers!  Be a part of a national
coalition of people with disabilities and join AAPD today.
www.aapd-dc.org


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