self advocates becoming empowered webinar with autism now july 10, 2012

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Self-Advocacy Conference

www.sabeconference2012.org

http://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)


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.


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.



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.



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

http://goo.gl/PkqVa

http://www.ndrn.org/



“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




“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




“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




“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


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


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


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self advocates becoming empowered webinar with autism now july 10, 2012

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