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In this webinar, the protection of the civil and human rights of individuals with autism and other developmental disabilities is the main focus. Speakers from the National Disability Rights Network (NDRN), Disability Rights Washington, Not Dead Yet, and Self Advocates Becoming Empowered come together to talk about issues that violate human rights and what can be done to help.
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Today’s Webinar Brought To You By
Self-Advocates Becoming Empowered
Join Us At The National
Self-Advocacy Conference
www.sabeconference2012.org
What Is This World Coming To?
The Use of Medical Procedures that
Violate Civil Rights
In April, Dr. Phil did a show called Deadly Consequences: Mercy or
Murder. It presented the idea that parents should be able to euthanize
their children who have intellectual disabilities.
In May, a report documented cases where basics like food, water and
medication were denied to people with disabilities who had minor illnesses.
In one instance, the report found that a 13-year-old boy with a
developmental disability was denied antibiotics to treat pneumonia and
ultimately died. The report, Devaluing People with Disabilities: Medical
Procedures that Violate Civil Rights, is written by National Disability
Rights Network (NDRN) and Disability Rights Washington. It looks at
instances where parents have used procedures to prevent puberty in their
children with disabilities. Curt Decker, executive director of NDRN said:
“The thought of doctors and guardians, together, deciding to remove the
body parts and stunt the growth of a child based on assumptions about
their awareness and quality of life is shocking and disgusting.”
NOT DEAD YET
Diane Coleman, JD, President/CEO
497 State Street
Rochester, New York 14608
(585) 697-1640
www.notdeadyet.org
Diane Coleman is the President of Not
Dead Yet, a national disability rights group
which she founded in 1996 to give voice to
disability rights opposition to legalization of
assisted suicide and euthanasia. She is a well-
known writer and speaker on assisted suicide
and euthanasia, and has appeared on national
television news broadcasts for Nightline, CNN, ABC, CBS, MSNBC and
others, as well as National Public Radio. She co-authored court cases
filed in the U.S. Supreme Court and various state courts on behalf of
Not Dead Yet and other national disability organizations on the topics of
assisted suicide and surrogate health care decision making. Ms.
Coleman is a person with neuromuscular disabilities who has used a
motorized wheelchair since the age of eleven.
Dr. Phil Show: Murder or Mercy?
Showed video of two adults with intellectual disabilities who don’t talk and are pushed around in wheelchairs in an institution.
Showed video of mother visiting them, which she said she did once every two months.
Showed photos when they were young children and able to walk.
Mother said that she believes they would not want to live and that it would be merciful to kill them by giving them a shot of deadly drugs.
Dr. Phil Show: Issues
Why did the mother put her two disabled
children in an institution?
What, if any, supports are these two adults
given to allow them to communicate their
wishes?
Would the law allow the mother to take away
the feeding tube that allows each of her adult
children to get food?
Should the law allow the mother to tell
doctors to give her children drugs to kill
them?
Dr. Phil Show: Kevorkian’s lawyer
Jack Kevorkian was the famous assisted
suicide advocate who eventually went to jail.
He said he assisted about 130 people to die.
Kevorkian’s lawyer was on the Dr. Phil Show
and said that the mother could take away her
children’s tube feeding.
We know cases of this happening, but usually
it is private, so we don’t know how many
cases there are.
Can mother take away food & water?
U.S. Supreme Court 1990 Cruzan
decision –
Parent or “surrogate” may decide to
withdraw medical treatment
Food & water by tube = medical
treatment that can be withdrawn in
some situations
State law determines the situations in
which this is allowed (so far)
Can mother take away food & water?
In some places, this is happening, but there’s a
struggle between:
State laws about parent decisions for disabled
people about health care treatments
Versus
Disabled people’s rights under the Constitution,
the ADA, etc.
Can mother take away food & water?
What if the children were not disabled?
– taking away food and water is called
child neglect and is a crime.
Why is it different for people with
disabilities? – because we are
devalued, we are treated as second
class citizens, as though we have no
rights because we need medical care or
other supports.
What can we do to stop this?
Share information about this issue
Work with a legal advocacy
organization to help you choose
someone you trust to make health
care decisions for you if you are in a
situation where you can’t
Help your friends do the same thing
Advocate for better laws
Study Finds Medical Procedures Violating
the Civil Rights of People with Disabilities
In a first of its kind study, the
National Disability Rights
Network (NDRN) determined
that performing certain
medical procedures or
withholding life sustaining
treatment in non-terminal
situations without judicial
review violates the civil rights
of people with disabilities.
Study Finds Medical Procedures Violating
the Civil Rights of People with Disabilities
Today’s Speaker:
David Carlson
Disability Rights Washington David is the Associate Director of Legal Advocacy for Disability
Rights Washington ("DRW"). David advocates for the rights of
people with disabilities. David is co-author of Devaluing People
with Disabilities: Medical Procedures that Violate Civil Rights,
a report released by National Disability Rights Network and
Disability Rights Washington. Additionally, he co-authored a report
on the legal rights implicated by the hormone and surgical
procedures used in the "Ashley Treatment" to keep a six year old
girl from growing, which received the National TASC Advocacy
Award in 2007.
Study Finds Medical Procedures Violating
the Civil Rights of People with Disabilities
Today’s Speaker: Cindy Smith Cindy joined the staff of National Disability Rights Network in March
2010. Prior to joining NDRN, she spent almost two years as the
public policy specialist at Children and Adults with Attention
Deficit/Hyperactivity Disorder. In 2005, Cindy graduated from the
Syracuse University with a J.D., M.S. in Cultural Foundations in
Education, and C.A.S. in Disability Studies. Cindy has also
completed her coursework for a Ph.D. in Special Education at
Syracuse University. During law school, Cindy interned at Legal
Services of Central New York and Equip for Equality. She has also
worked as an adjunct professor teaching an education law course
and as a researcher at university based centers conducting applied
social policy and legal research on employment, education and
community integration issues.
Devaluing People with Disabilities
Medical Procedures that Violate Civil Rights
“Five years ago, news broke worldwide that a six-year-old child
with developmental and physical disabilities, Ashley, was given
growth attenuation treatment via estrogen and had her uterus and
breast buds removed.”
“Supporters of the treatment claim that this is the most personal of
family decisions and there is no need for external judicial review of
the decisions made by the family. “
“People with disabilities and advocates in the disability rights
movement, however, assert that all individuals, regardless of their
disability status, have individual rights that cannot be ignored.
Decisions like those made in this case are the most personal of
“personal rights,” not “family rights.”
http://goo.gl/PkqVa or www.ndrn.org
Devaluing People with Disabilities
Medical Procedures that Violate Civil Rights
“The Disability Rights Washington investigation resulted
in an agreement with the hospital where the procedure
was performed where the hospital acknowledged that
Ashley’s rights had been violated and agreed to a
number of required safeguards for children with
disabilities, including a requirement for a court order if
such procedures were considered in the future, and the
inclusion of a person who has a disability, or an
understanding of disability from a civil rights
perspective, on their ethics committee.”
http://goo.gl/PkqVa or www.ndrn.org
Devaluing People with Disabilities
Medical Procedures that Violate Civil Rights
“In many of these discussions, the rights of children
were blended with the rights of their parents. However,
when a parent seeks to permanently and potentially
unnecessarily alter a child’s body through invasive and
irreversible procedures, this blended view of rights is
inappropriate, as a potential or actual conflict of interest
may exist. In these situations, it is imperative that the
child’s rights be untangled from those of their parents.
When the child in question has a disability, the
questions become even more complex.”
http://goo.gl/PkqVa or www.ndrn.org
Devaluing People with Disabilities
Medical Procedures that Violate Civil Rights
“The United States has a shameful history of how it has treated
children and adults with disabilities dating back more than one
hundred years and continuing today.”
“In fact, there are times, as this report will describe where
physicians recommend and family or other surrogate decision
makers decide to not provide a needed transplant, to withhold
medical treatment including hydration and nutrition of individuals
without a terminal condition, or to sterilize people all on the basis of
their disabilities. Applied in these ways, medical decision making
and procedures are discriminatory and deny basic constitutional
rights to individuals with disabilities including the rights to liberty,
privacy, and other statutory and common law rights.“
http://goo.gl/PkqVa or www.ndrn.org
Devaluing People with Disabilities
Medical Procedures that Violate Civil Rights
“The report … describes the vital role that the legal system has in
ensuring that the civil and human rights of individuals with
disabilities are protected. “
“The report discusses how the deprivation of these rights is harm
within and of itself and that all individuals have substantive rights
regardless of the severity of their disability. It goes on to outline
how discrimination inherently causes harm to both the person who
experiences the discriminatory conduct and society as a whole.
Finally, the report presents a series of recommendations for how
the legal and medical systems at the local, state, and national level,
including protection and advocacy agencies, ethics committees,
institutional review boards, and the courts can perform critical
“watchdog” functions to ensure that the human and civil rights of
individuals with disabilities are protected.”
http://goo.gl/PkqVa or www.ndrn.org
Can you share a couple of the stories that
are in the report?
Story From Wisconsin
“A thirteen year old child who lived in a group home in Wisconsin
died when his parents and doctors agreed to not treat him for a
cold. Although, he had developmental and physical disabilities, he
was not terminally ill or in a persistent vegetative state. The people
who provided daily support to him at the group home took him to
the doctor when he caught a cold, and the doctor prescribed an
antibiotic. Once the parents discovered the group home provider
had sought treatment for the child’s cold, they informed the provider
that they had an arrangement with the child’s primary physician
and they were in agreement that the next time he got sick, they
would let the infection progress into pneumonia and then not treat
the pneumonia, so that the child would die.”
http://goo.gl/PkqVa or www.ndrn.org
Additional Questions Discussed on Webinar
David Carlson and Cindy Smith answered the
following questions:
Can you describe what specific civil rights are being
violated?
What steps can a person take if they are being
denied medical treatment because they have a
disability?
What could a self-advocacy group do to take a stand
on these issues?
What resources should we explore to learn more
about this issue?
http://goo.gl/PkqVa or www.ndrn.org
Continue the discussion through our FORUMS! You will receive an email shortly with a link to our discussion board. The PowerPoint and recording will also be provided in this email. Email Phuong
(pnguyen@autismnow.org ) if you experience any issues.
Website: www.autismnow.org
Information & Referral Call Center:
1-855-828-8476
Next Webinar: Tuesday, July 17, 2012, 2:00-3:00 PM, EDT
Personal Space While Sharing a Space
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