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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 wellknown 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 dont 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: Kevorkians lawyer

Jack Kevorkian was the famous assisted

suicide advocate who eventually went to jail. He said he assisted about 130 people to die. Kevorkians lawyer was on the Dr. Phil Show and said that the mother could take away her childrens tube feeding. We know cases of this happening, but usually it is private, so we dont 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 theres a struggle between: State laws about parent decisions for disabled people about health care treatments Versus Disabled peoples 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 cant 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
Todays 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
Todays 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 Ashleys 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 childs 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 childs 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 childs cold, they informed the provider that they had an arrangement with the childs 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.
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