Ashley, again,

Pure

Fiel a Verdad
Joined
Dec 20, 2001
Posts
15,135
Hospital admits breaking law.

Can't help it, this case, which again hit the papers, continues to haunt me.

May 8, 2007 at 10:00 a.m.

Jennifer Seymour,
Media Relations Manager,
Children’s Hospital (206) 987-5207

WPAS Finds Hospital That Performed “Ashley Treatment” Violated Law by Not Having Court Order Hospital Takes Full Responsibility and Implements New Safeguards

SEATTLE – An investigative report released today by the Washington Protection and Advocacy System* about the much-publicized “Ashley Treatment” finds that Children’s Hospital and Regional Medical Center, as a result of a communication breakdown, violated Washington state law in performing the hysterectomy portion of the “Ashley Treatment” on a 6-year old with a developmental disability without a court order authorizing the procedure. This resulted in violation of Ashley’s constitutional and common law rights.

WPAS, under its federal authority, initiated its investigation of the “Ashley Treatment” after publication of a medical journal article describing this “treatment”. Children’s Hospital has acknowledged that Washington law requires a court order for the sterilization of a child with a developmental disability and has entered into an agreement with the Washington Protection and Advocacy System (WPAS) to take corrective action to assure that the sterilization of a child with a development disability does not happen again without a court order.

Above and beyond the corrective action, Children’s Hospital is taking steps to protect the rights of their patients with developmental disabilities including appointing someone with a disability rights perspective to the Hospital’s Ethics Committee, and requiring a court order for procedures conducted for the purpose of growth attenuation including breast bud removal, hormone treatment, and other growth-limiting medical interventions when it involves a child with a developmental disability.

In 2004, Ashley’s parents sought medical treatment that would “keep [her] small” to prevent her from growing and developing sexually. The parents requested a treatment plan that included surgically removing Ashley’s uterus and breast buds, and administering high levels of hormones. In their blog,

Ashley’s parents claim that this collection of procedures would help Ashley by making her smaller and lighter, and therefore more comfortable when lying down, more easily repositioned by one person and create more opportunities to be included in family outings. After Ashley’s parents consulted with doctors at Children’s Hospital, an ethics committee was convened at the hospital to discuss whether the treatment options suggested by her parents were in Ashley’s best interests.

The committee’s opinion supported the recommended treatments and also noted that a court review would be required. Ashley’s parents sought legal counsel to advise them on the need for court approval of the hysterectomy and were advised by their attorney that no such order was needed.

Although her parents had a lawyer, no independent advocate was sought or provided to Ashley to protect her rights. “Hospital medical staff and administration interpreted this guidance from the parents’ attorney as adequate,” said Dr. David Fisher, medical director at Children’s Hospital. “It is clear in retrospect that a court order should have been obtained before proceeding with the surgery.” “We deeply regret that a court order was not obtained and that an independent third party was not sought to represent Ashley. We take full responsibility for the miscommunication between the ethics committee and the treating physicians,” said Fisher. “We have introduced new safeguards so that procedures requiring a court order will have one obtained before they begin.”

“Washington law specifically prohibits the sterilization of minors with developmental disabilities without zealous advocacy on their behalf and court approval and, in this instance, it did not happen,” said Mark Stroh, Washington Protection and Advocacy System (WPAS) executive director. “That said, we are grateful to Children’s Hospital for their cooperation with our investigation and their willingness to enter into an agreement that will help protect the rights of their future patients with developmental disabilities.”“Courts have also limited parental authority to consent to other types of medical treatment that are highly invasive and/or irreversible,” said David Carlson, Associate Director of Legal Advocacy.

“The other aspects of the ‘Ashley Treatment’ – surgical breast bud removal and high-dosage hormone treatments – should be subject to the same level of court review as those required for sterilization.”“The implementation of the “Ashley Treatment” also raises serious concerns about the continuing discrimination faced by people with disabilities – discrimination which is often based in stereotypes about their potential and value as individuals,” said Stroh.

“The news of the ‘Ashley Treatment’ shocked the disability community around the world. People concerned with the rights of individuals with disabilities still have a lot of questions about why this type of invasive and irreversible procedure would be performed on a six year-old,” said Curt Decker, National Disability Rights Network (NDRN) Executive Director. “We hope that the agreement between WPAS and Children’s Hospital will be the first step in resolving this issue and that the long term result will be an end to the use of the “Ashley Treatment”. I know the entire disability community will be carefully watching the implementation of this agreement.”

# # #

Washington Protection and Advocacy System (WPAS) is a private non-profit organization that protects the rights of people with disabilities statewide. The mission of WPAS is to advance the dignity, equality, and self-determination of people with disabilities. WPAS works to pursue justice on matters related to human and legal rights. * As part of a national trend with protection and advocacy agencies, WPAS is
 
It is a haunting story, indeed.

I am, first and foremost, an advocate of choice. When informed consent is not obtainable, things get all kinds of complicated.

I look at what was done to this girl, and I shudder. Then, I look at the child who was placed in an institution because he'd grown too big for his aging parents to transfer from bed to wheelchair -- and how he suffocated in a car because of staff neglect. Or the kid who choked to death because untrained staff gave him a food to which he was known to be allergic. Hardly an improvement in the quality of their lives, eh?

The solution, of course, is not to surgically alter these people -- but to establish sustainable systems of care that provide supports and services in the homes of their choosing. It's doable -- and it's doable at a lower cost than in institutional environments.
 
I have been hesitant to weigh in on this thread and the one before it.

I spent the year between undergraduate and graduate school working in the poorest county in New York State, at the profoundly mentally retarded home there (and yes, they called it that, before people get on my case about being un-PC).

I cleaned up piss, shit, puke, come, blood, spit, mucus, and combinations of the above that you would not have thought would ever come out of the human body. I spent hours feeding thickened formula to an achondroplastic dwarf with a mental IQ of a literal newborn baby, in a little round plastic spoon in baby portions so he wouldn't choke on it. I showered a blind woman with fits who liked to pinch, scratch, and kick like a horse. At only 100 lbs., I had to lift both the dwarves there (one 60 lbs, the other about 40) to clean them up and give them fresh diapers. You get the picture.

A lot of people applied to work there, because it was one of the best-paying jobs for people without a college education (I was an exception) in the county. All but two of the approximately twenty people that applied for a job there only stayed for less than a week, and one of the two that stayed longer than that left after a month.

Taking care of these people is hard work, and to some degree I can sympathize with the parents and the hospital who want to make their lives a little easier. I do not think they are inhuman monsters. There are a lot of times I thought it would be easier if these mentally retarded adults (all at least twenty years older than myself) were strapped down and left alone, rather than having to deal with them. I am honest enough to admit I thought that. Ashley's parents and medical care providers are not monsters, and if I thought what I did and got to go home each night, I can't imagine what dealing with that for twenty-four hours of your life would be like, what a toll it would take on you. Claiming that they want to do this to help Ashley's treatment strikes me as the truth, because I have dealt with people of her developmental level and know that it is an honest claim, when you do want to make them more "manageable".

However, to deny a person the ability to be a person - and yes, that includes sexual function - is barbaric. These mentally retarded folks were still people, even though their IQs ranged from infantile to about five years old. There were some of them that I liked, and there were some that were jerks and assholes (same thing with the people that took care of them, I should add). None of them were in a comatose state, but nonetheless, they were allowed to be their own people in whatever small way they could. Ashley too should be permitted this opportunity.

As was previously stated, this procedure is indeed invasive and irreversible, and that is where my support of the parents stops. By all means, make her care as easy and manageable as you can - but don't harm her in doing so.
 
I've never heard of such a "treatment". Reading the story gave me chills, but there is too little information for me to have a solid opinion on the treatment itself. The fact that the child had no advocate other than her parents kind of scares me. Mainly because I see the very real possibility of parents hearing one success story and having lived with a heavy amount of disappointment and possibly even hopelessness, any treatment with partial merit begins to look better than it may actually be. For that reason, I'm glad more is being done in regard to checks and balances. Still, Imp's mention of the need to refine and broaden the scope of services sems to me a place where more attention should be paid rather than crisping up legal wording and protocol.
 
There is no way to handle people like Ashley that will make everyone happy.

I'm on her parents side. Everything they've done was for her comfort.

I would opt to give her a hysterectomy, myself. Can you imagine what menses would be like for her?
 
However, to deny a person the ability to be a person - and yes, that includes sexual function - is barbaric. These mentally retarded folks were still people, even though their IQs ranged from infantile to about five years old. There were some of them that I liked, and there were some that were jerks and assholes (same thing with the people that took care of them, I should add). None of them were in a comatose state, but nonetheless, they were allowed to be their own people in whatever small way they could. Ashley too should be permitted this opportunity.

I think there are persons-with-defects, whose welfare, and yes others' difficulties have to be taken into account. We are not talking about a 'borderline' Down person who can look after herself, talk, plan, etc. Nothing should be done to him or her beyond BC pills, perhaps.

However, IF we assume you've got, say, a four year old mind and the body of a woman or man, that's sounds like trouble; indeed some end up pregnant, and it's not from experiencing love or even caring sex, it's from the driver of the disabled van (transportation) taking advantage. Then there's the abortion.

So I don't think 'comatose' should be the test, but, say, a reasonable ability to live in semi-assisted way, and physical ability to walk stand run shower bath, shit. Else no sex life, at least with other people. Just as there is no car driving, skiing, surfing, etc. Where there is purely a physical disability.
 
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I think I am best qualified to weigh in on this as my oldest Granddaughter is in a state where she will never be more intelligent than a 3 year old, plus she has several heart defects which plague her currently and will throughout her life.

She is currently taking drugs which will stop her from going through menses, in effect keeping her pre-pubescent for as long as she takes the drug. The drug has side effects, which have not manifested as yet.

Would I as her Grandfather, if it was up to me, allow her to be sterilized? I believe I would as she will never lead a productive life as we know it and the complications of becoming a woman would frighten her and just confuse her too much.

At some point she will have to be placed in a home or institution that will be able to care for her and that will sadden me. By that time I will be to old to even take care of myself or I would gladly take over the care of this little girl who just happens to be my favorite of all my grandchildren.
 
Zeb_Carter said:
I think I am best qualified to weigh in on this as my oldest Granddaughter is in a state where she will never be more intelligent than a 3 year old, plus she has several heart defects which plague her currently and will throughout her life.

She is currently taking drugs which will stop her from going through menses, in effect keeping her pre-pubescent for as long as she takes the drug. The drug has side effects, which have not manifested as yet.

Would I as her Grandfather, if it was up to me, allow her to be sterilized? I believe I would as she will never lead a productive life as we know it and the complications of becoming a woman would frighten her and just confuse her too much.

At some point she will have to be placed in a home or institution that will be able to care for her and that will sadden me. By that time I will be to old to even take care of myself or I would gladly take over the care of this little girl who just happens to be my favorite of all my grandchildren.
Thank you, Zeb. :rose:

I believe that these things should be decided on a one-at-a-time basis, and that the disabled community, which constantly battles issues of stereotyping, should refrain from making sweeping generalisations.
 
Stella_Omega said:
Thank you, Zeb. :rose:

I believe that these things should be decided on a one-at-a-time basis, and that the disabled community, which constantly battles issues of stereotyping, should refrain from making sweeping generalisations.
Thank you dear Stella. :rose:

P.S. Her name just happens to be Ashley and I love her dearly. :heart:
 
Thanks, Imp. That was just as chilling and heartrending as the first article.
 
thanks, imp

great link.

the issue of correctly identifying retardation is a vital one.

the author does skirt the issue of sex and puberty and impregnation. much of the 'ashley treatment' is address to these things, and the author does not really have a case for impregnation and childbearing, so far as i know.

IF all other issues would be addressed, I can see discussion of 'growth attenuation,' esp. where there is home care. BUT the auther righly cautions us against the pitfalls.
 
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