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Report: ‘Ashley Treatment’ Violates Disability Rights


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A first-of-its-kind report is casting a harsh light on what’s believed to be a growing practice of parents utilizing controversial medical treatments to physically alter people with disabilities.

The report released Tuesday examines cases where parents have used procedures to prevent puberty or make other significant changes to their children with disabilities. The study also looked at instances where life-saving medical treatment has been withheld from those with disabilities.

“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,” said Curt Decker, executive director of the National Disability Rights Network, an umbrella group for the protection and advocacy organizations in each state which produced the report.

Decker’s group documented cases where basics like food and water were denied to those 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.

Officials at the the National Disability Rights Network say their concern was prompted by the so-called “Ashley treatment.” The approach includes hormone therapy and surgery to keep children physically small and prevent sexual maturity. It is named for a Seattle-area girl with severe disabilities who was the first-known person to undergo the procedure.

There has been significant debate about the ethics of the treatment since Ashley’s case was made public in 2006. The girl’s parents argued that because of her mental and physical deficits their daughter would be most comfortable and less vulnerable if she remained the size of a child.

Many disability advocacy groups have criticized the approach, however, as violating Ashley’s rights.

Nonetheless, use of the treatment is believed to be on the rise and the current report includes the stories of two others who have undergone the “Ashley treatment” in recent years.

The National Disability Rights Network is encouraging greater oversight of procedures like the “Ashley treatment” and the withholding of medical care for people with disabilities.

“Every person is born with civil and human rights and an inherent dignity,” said Decker who is behind the report. “The reality that this is happening in the United States is anathema to the core values that we as Americans say we hold. That it is happening to those unable to use their own voice is even worse.”

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Comments (13 Responses)

  1. Stephanie Volpe says:

    Every person and child deserve to have the same medical care and go through life just like any typical person. To force a child not to go through puberty or to withhold treatment conveys that they are less ‘deserving of ….’

  2. Tim says:

    This is horrifying!

    Those responsible for withholding treatment from the 13-year old who died should be criminally prosecuted. Physicians or other medical professionals who provide the “Ashley Treatment” should be professionally censured, as such treatment certainly violates the fundamental right of patients and is a breach of the professionals’ Code of Ethics. By definition, “treatment” is an intervention in response to health problem. What health problem does the “Ashley Treatment” address other than normal human development? It seems to me this is much more for the benefit of parents or other caregivers than it is for the individuals involved.

  3. Denise Shoaf says:

    All human life has value and inherent dignity. To think otherwise is a crime.

  4. CJ says:

    Dr. Phil had a parent on who thought that she should have the right to murder her 2 kids who have developmental disabilities. Mind you, the word murder was not used, but that is what they were talking about. He gave her a lot of time on the stage to talk about her point and gave a dissenting mother about a minute to speak from her chair in the audience. Near the end of the segment he asked the audience how many people supported the wanna-be murderer’s point of view. Most people raised their hands. We have our work cut out for us.

  5. Jackie says:

    It is sad that people are so selfish that they could even think of altering another persons body for any reason, let alone abdicating that because someone is disabled murdering them because of this would be acceptable. It a sick statement to the mind set of our society of today, After all not all disabled people became disabled because of a birth defect, think about how many people become disabled due to a traumatic life altering event later in life…..

  6. vmgillen says:

    Forget the AMA – I’ve given up on the medical profession as a whole – though there are many excellent individual professionals. Many of the problems persons with disabilities face are constructed by medical professionals. No, my friends, we are looking at violations of the 14th amendment. And please, be very, very careful when speaking about this issue. There is a big difference between withholding antibiotics and insisting on life-sustaining treatments – which can be nothing more than torture to secure a short medical prolongation in the face of a foregone conclusion (check some of the case law on this – it ranks right up there with Ashley’s case for creepy-disgusting wrongness.) D. Shoaf: you’ve hit the nail on the head.

  7. ann masotti says:

    This is disgusting and outrageous….a similar situation ocurred recently in Philadelphia where a Downs’ Syndrome child was denied a kidney for a transplant….a petition was posted, and subsequently, the hospital/physicians saw the light….I urge more petitions to be used to fight this horrible evil of “playing God” with human life… smacks of Nazi Germany where the “flawed” were considered expedient…..go to and “go for it”!!!!

  8. Patty says:

    As the mother of an 8 year old daughter who has significant developmental delays (she functions on the 6 – 12 month level) I would LOVE to be able to keep her from going into puberty. I will be the one responsible for cleaning her every month when she has her period. She is the one that will possibly suffer from
    menstrual cramps, If I could keep just this tiny bit of suffering out of her life, I would do it in a heart beat as would many of my friends. At some point she will have to go into some sort of institutionalized setting as my husband and I are not going to live forever. The though of some freak or pervert raping her just nauseates me. There are 2 sides to every story.

  9. hdemic says:

    It is for the caregiver. My girl is almost 18. 75lbs and approx 4ft10in. I am very blessed for her small size. She has all of her girly parts and started her periods on time. I can barely lift her. For all of you people who don’t want to wipe butts day end and day out. See to positioning, exersises,socializing. fight with schools, medical, no dentist,fight every day of your life for your childs basic rights shut up. I will gladely take the less of two evils to keep my child with me. At this time society does not support livin with the family. I have worked in the hosp for 30yrs and time again I have seen persons with open bedsores and webbed toes from nursing homes with no one to fight for them. And there is a big difference medically. Are you doing something for her or are you doing something to them. and withholding something is totally different than making a quality of life available. Also this is for very disabled-not able to communicate even with technology, unable to move. High risk for breakdown.
    For those of you I yelled at it would be good if you would walk up to a disabled person and say a big HI
    Mom of disabled young adult

  10. Thomas C. Weiss says:

    Supporters of the Ashley treatment should find themselves staring into the mirror on a daily basis, pondering every single imperfection they find in themselves, and pursuing everything from salon treatments to plastic surgery. Heaven forbid they should ever experience diabetes, a car accident, or something similar – after all, from their perspective things such as organ transplantation or even assisted suicide would suit them adequately.

    Perish the thought such Ashley treatment supporters should ever experience a form of disability where they lose their voice, or the ability to make independent decisions. Such an experience would find them in the hands of family members who have been persuaded by their philosophies for years; yikes.

  11. Jessica says:

    My son has autism and is physically aggressive. He throws things, attacks me with fists, intentionally head butts me, kicks my throat when I change him, and bites my thighs when I am standing up and he is angry. If he does not get the therapy he needs (recent autism insurance legislation was passed…but the details are skill unknown about securing therapists) then he could become an adult who does those things to me. I weigh in at 110 lbs and 5’2, his father is 6’0 and 230 lbs. My son is 2 1/2 and is already 3” tall and 33 lbs…what will happen if he gets too big and I can’t control him? I would never consider stunting his growth though.

  12. Catherine says:

    to Patty: as someone who has a 14 yr old daughter (with a significant disability) who menstruates, your fears about managing her period are a little exagerated. It’s not incredibley difficult, but my daughter was upset about the blood and she’s now on a monthly pill (that MANY other teenage girls and young women take) so she only has 2-4 periods a year.

    If she is in an institution, a freak or pervert who decides to abuse her is not going to care if your child menstruates or is physically smaller than a grown woman.

    One of the best ways to protect our kids from abuse is for more people to know them, for more “typical” people to be in their lives and care about them. Segregation makes our kids more vulernable, not less. For that reason alone I will work for community integration and community living supports that will keep her out of an institution when I’m gone.

  13. David says:

    Those against this treatment should walk a few miles in the shoes of the parents of the children this procedure is being considered for. The basis of the desire is love. The ability to care for their child in their home and not send them to a nursing facility for care. With all the rights in the world, how about the right to be cared for by loved ones at home! This procedure can make that possible for families.

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