Hospital broke law in treating stunted girl

Source: Associated Press

SEATTLE (AP) - A Seattle hospital acknowledged breaking state law when doctors performed a hysterectomy on a severely developmentally disabled girl whose parents have pursued medical treatments to stunt her growth, making her easier to care for.

Sterilization surgeries must not be performed on children without a court order, Children's Hospital and Regional Medical Center said Tuesday after an investigation by Washington Protection and Advocacy System. The hospital also agreed to appoint "someone with a disability rights perspective" to its ethics committee.

Doctors performed the experimental surgeries in 2004, removing the girl's uterus and breast buds. The girl, identified only as "Ashley," was 6 years old at the time. The hospital's ethics committee supported the treatment, which included hormone therapy, but noted before the surgeries that court review would be required.

A lawyer for the girl's parents disagreed, saying the state law did not apply in Ashley's case, and the hospital performed the procedures without court permission. Ashley was diagnosed with severe brain damage shortly after birth, and her condition has left her in an infant state, unable to sit up, roll over, hold a toy or walk or talk.


Read more: http://www.komotv.com/news/7394011.html

Eventually she would have been too much to take care of, and left to languish in state care. They are trying to keep her with them. I think that is great.
It's a quality of life issue.

The child was profoundly compromised. They wanted to keep her at home, not end up leaving her in a warehouse where she might be subject to abuse or neglect.

have to care for her 24 hrs a day.

There are no right answers sometimes, and the families MUST be left to make these decisions themselves.

This young lady was never going to have children. They made the best decision for them. That is all I have to know to know it isn't any of my fucking business what these poor people have had to decide to cope with a burden worthy of Job.

I'm seeing a couple of posters framing this as a choice between the radical, invasive surgery (do we amputate the limbs of people who are paralyzed?) and life in a state institution. In fact, since the Olmstead decision that affirmed the civil right of people with disabilities to live in the community, most states are moving away from institutions toward home and community-based services. Ashley would certainly have qualified for such services -- in Illinois, by the way; the family went to the Seattle hospital only because no one else would do it. The family has this weird thing about not trusting outside caregivers. There's some bizarre dynamic going on there. I mean, they call her their "pillow angel"?! Yikes! Plenty of adults with disabilities, including significant disabilities such as Ashley's, do perfectly well outside of institutions with the proper community supports. So could Ashley have, if only she had been allowed to grow up.

outside an institution. Don't you get it - she's "in an infant state, unable to sit up, roll over, hold a toy or walk or talk". Jeesh!

Obviously her life is radically different than our own. The question is, would it be better spent in her own home, or in an institution (they haven't changed all that much since Willowbrook)?

Actually, the family and I have come to the same conclusion: her own home. Where we differ is in the means used to keep her there. I, and the disability rights community generally, say community supports; the family and this hospital say invasive surgery that wasn't medically indicated. Now the court has found a flaw in their method. This is why we have protection and advocacy agencies in the first place (every state has one; the National Disabiltiy Rights network mentioned is their trade association).

The oversight and regulations for the care of the developmentally disabled have evolved dramatically! I've been doing this work for half my life, so I've witnessed this. Most states have moved away from the institution model and now have community based homes and services. I'm now a Social Worker in the field and part of my job is to protect the rights of the disabled. You'd be surprised at how heavely regulated this field is. In New York State there's even a Willowbrook decree to provide even more oversight to folks who once lived at Willowbrook.

As I said below, my cousin is in her 30s and her brother,who is even more severely disabled is even older. They've not been in an institution for many years now but with their parents aging it's probably inevitable. I'm glad to read that things have changed for the better.

but this seems an impossible burden on one family and if they felt keeping her at home was their best option, I don't blame them for doing what they did. But if she doesn't belong in an institution I can't think who does. Most people would put their elderly parents in an institution long before they reached this state and no one would blame them.

They're dangerous, soulless places. There's no way to "improve" them except to tear them down and build hybrid car dealerships or something on the sites. People with disabilities have the right, affirmed by the Rehnquist Court, no less, to live in the same communities as everyone else.

As to the burden on the family, well, what we do need to improve is the level of support available.

in the same community as everyone else unless her family cares for her?
She can't support herself.

under what is known as a "Medicaid waiver". Every state except AZ has at least one waiver.

Unless they move into the home w/ the family and are available around-the-clock, the family still bears the brunt the responsibility in assisting this girl with day-to-day living and decision-making regarding her care. They should be responsible for making decisions that will improve their ability to care for her.

Most states have moved away from the institutional model in caring for the disabled. I work in New York State so I can only speak for the services here. There are Individual Residential Alternatives, a group home with usually 5 individuals who's needs are similiar and staffed 24/7 with clinical services built in. It's funding comes from the state, federal government or private donations depending on who runs it, as well as a portion of the individuals benefit income (SSI, SSA, etc), that a disabled child or adult would qualify for.

Home and community services are a joke I wouldn't wish on my worst enemy. Paid for by for profit insurance companies, they have every incentive to cut costs whereever possible and have no problem doing so. The people get custodial care, inadequate custodial care. There may be some lip service and a few dollars thrown at rehab, but it is never sufficient to make any significant difference, The State is interested in SAYING they provide this that and the other service, but not in actually providing an effective service.

HI is trying to move in that direction (this is why you do not elect a repuke governor, no matter how badly you want change!); it's been held up mainly by their own incompetence in terms of obtaining Federal approval!

As a colleague of mine who has a daughter with DD, a former Pittsburgher in fact, put it, "Managed care is for the well." :grr:

...back when he was Governor of California.

Reagan wanted to save money, the ACLU wanted patients' civil liberties preserved, mental health advocates wanted institutions replaced with a network of community-based halfway houses.

The mentally ill are now perfectly at liberty to sleep under bridges and in alleys, talking to their demons and trying to quell them with booze and street drugs. When they can't maintain, they end up in prison, which is by default now the biggest "mental health facility" in the nation. There are precious few halfway houses.

My first mother in law -- a state psychologist and Republican -- went to her grave in 1978 despising Reagan for what he did. She knew all about the flaws and abuses of the old system, but at their best they were "asylums", places of refuge.

BE CAREFUL WHAT YOU WISH FOR. You better be sure that safety net is made of steel.

Not every family is capable of taking care of a disabled adult 24/7. Parents will age and themselves need care. In recent years when a batch of bad group homes closed all at once, Los Angeles-area families were left scrambling to provide alternatives.

That's all; just please be careful not to throw the baby out with the bathwater.

Hekate

Place the blame where it belongs, on the repukes. Come to think of it, that's a formula that will pretty much work with any issue. :-)

Parents will age and themselves need care.

No argument here. The "aging caregiver problem" is something we deal with in the field all the time. Why, though, are family members rather than professionals expected to be the caregivers?

...to give credit where credit is due.

Hekate

Real world calling here. Because in many (most?) states it is the parents to whom the bulk of the care falls.

With a disabled child of my own, I am terrified of leaving her to the institutional mercies of Adult Foster Care.

You cannot buy security, stability, concern, or even competence. You can pray that when you are dead and your child is not, that someone somewhere gives a damn, and she doesn't end up raped, pregnant, abused or murdered. But unless someone keeps a wary eye on the situation, you and your child are in danger of being screwed, repeatedly.

My child will always be childlike. If she matures beyond the emotional age of 13, which she finally reached at the age of 24, I will be grateful. But the odds are not good, and the Medicaid is being cut every time anyone wants another war or occupation, or golden parachute.

Don't you dare lecture anyone about something you don't have to live with.

To paraphrase the immortal Alberto Gonzales, "Not that I recall." :-) HCBS is supposed to bring people into your home so that you don't end up shouldering the whole burden by yourself. Of course, it doesn't always work that way...

and the Medicaid is being cut every time anyone wants another war or occupation, or golden parachute.

...and that's why, because we're the lowest priority for the greedy warmongering repukes. Reason #8,327 why they have to go. Now.

Community based services. I total crock for all, especially the seriously disabled. This girl will be cared for by people who love her in a caring way. Let's not confuse the way we wish things were with the way they are.

I've worked in the field of mental retardation and developemental disabilities for 28 years and what these parents did was unprecidented. They've surgically altered their child so she will never become an adult. And the reasons they give are to make it easier to care for her. May-be they should have given her a colostmy too so they wouldn't have to change her diaper.

I don't want to sound indifferent to the plight of these parents, taking care of a disabled child is very hard. I know parents who do this everyday and would never dream of putting their child through all this elective surgery, just so they could make it easier on themselves.

This little girl had no say in the matter, she can't give consent and her parents have decided for her, she can never grow up. Some may say she's too disabled for it to matter to her. But she's a human being with certain rights. I know some people may compare this to Terry Schiavo, but the cases bear no similarity. This little girl is not brain dead, she's mentally retarded and there's a difference. In my experience I've found no matter how disabled an individual is, they still have feelings, know what love is, can experience joy, sadness.

There are many organizations and supports out there for parents of disabled children, no parent should have to resort to such drastic measures. This is a heartbreaking case.

I am curious, though, from a biological perspective if this child will never grow up, does that mean it will take her much longer to grow old? In the long run, the parents may have sentenced her to a far longer life in an institution than they could have ever imagined.

When I said never grow up, I meant her body will never mature to adulthood. That doesn't mean she won't age. Given the extent of her disabilities, she probably already has many ongoing medical issues and I would think with the surgery she had to prevent her body from normal growth and maturation this would be an added assualt on her tiny little body.

This case is so sad!

to die and things occur in a systematic fashion in order to reach that point. Disrupting the clock could allow an organism to live beyond its original planned death by depriving the organism of certain cues as to "what to do when." Some cancers occur in this fashion. Their cell death mechanisms are turned off. The cells do not age and they do not die. This is what makes me wonder what the long term consequences of removing a part of the body's "plan" will be. I guess time will tell...

It's kind of like the parents who had a whole bunch of plastic surgery done on their Downs Syndrome child so he would appear more "normal."

This reminds me of what the Nazis did to the mentally retarded. Or the people in history that had them sterilized without their consent. There are really good reasons that this kind of stuff should be controlled by the courts.

I have a very severely mentally retarded cousin and she had a total hysterectomy before puberty. Granted, she's in her 30s now so laws may be radically different and very possibly I'm way off base but supposedly it was that she is so highly anxious they were afraid menstruating would freak her out. Personally, I've always believed it's because living in an institution puts her at a high risk for being sexually assaulted. I hate to be so cynical and I hope that things are changing for the better but I think it's deplorable the way mentally handicapped people are treated like subhumans without personal rights.

It's not like the vagina and anus are being sewed shut--the uterus and possibly ovaries are removed. The removal of reproductive organs does not in any way reduce someone's risk of being sexually assaulted--in or out of an institution. All it does is remove the risk of pregnancy (which may or may not occur depending on the chromosomal abnormalities that may be inherent in her disorder).

That part of the argument (along with pretty much every other aspect of these parent's basis for the surgery) makes NO sense at all.

which is why I think it's deplorable. It doesn't do a damned thing to eliminate the problem it just hushes it up and makes it easier to hide. My point was that it's not done for the good of the patient AT ALL. It's done so that there's no messy pregnancy to deal with. Even aside from the risk of sexual abuse for the most helpless of patients, mentally handicapped people who go through puberty don't magically loose their sexuality. There's also the possibility of consentual (but not really consentual) sex. It's nothing more than involuntary sterilization for the convenience of caregivers.

We know for a fact that involuntary sterilzation used to be commonplace. I think it's still widely practiced but they call it something else. Again, all the mentally handicapped people I know are 30+ so maybe things really have changed an awful lot but think it's probably still more common than one would imagine.

Does that make more sense?

deal with...

Imagine having a severely retarded child.

Imagine you grow to old to care for this child...so the child (now a woman) is placed in an institution.

You are living in a nursing home and you find out that someone apparently molested and impregnated your daughter.

You now have to make a decision...should you abort your grandchild? Who will raise this child? What if this child is as severely handicapped as its mother.....

You know...that might be more than some folks can bear...and I can understand that.

who is to say that she would have never been helped to a more normal life.

I just pretty much posted the same thing in reply to another poster---but I'd like to know how the removal of the uterus will, in any way, prevent this girl from being sexually abused if she were to be put in a group home or "institution".

At the most--the MOST--it would just prevent pregnancy---a pregnancy that may or may not even occur depending on the chromosomal abnormalities that may be involved in why she is in the state she's in.

One of the points of the parent's argument, and the argument of many here that support this HIGHLY unethical procedure is that it was done to prevent her from being sexually abused if she were placed in a setting other than her parent's home---HOW? THere are thousands--nay--MILLIONS of women in this country and around the world who have no uteruses (uteri?) that are subjected to rape and sexual abuse. There are MILLIONS of elderly men AND women in nursing homes who are sexually abused---certainly an 85 year old woman has no functional reproductive system---and yet that doesn't stop THEM from being abused.

Also, how does the removal of "breast buds" reduce or negate the risk of sexual abuse as well?

It's not like they sewed up her vagina and anus when they got the hysterectomy---she still has a vagina, and she still has an anus---therefore, the reason behind the surgery is moot---unless there is just something in human anatomy and physiology that I'm missing and that my numerous professors forgot to teach us in college and nursing school.....

Of course that does not guarantee she wouldn't be sexually abused. But it's likely reduces her chances of being sexually abused, if she is placed into the institution.

Wouldn't making her permanently "child like" make her MORE vulnerable in the eyes of those that prey upon the most vulnerable amongst us? She's already pretty vulnerable as it is--can't sit up, can't roll over, etc--pretty much an infantile state with regards to control of abdominal and back muscles.

I'm sorry, but as a clinician who works with people of all stripes and developmental levels, I just am not seeing the logic behind their decision. I mean, it's not as if pedophiles and those who prey upon the 'child like' don't work in institutions.....

On edit---

The uterus doesn't even emit hormones---so how would removal of the uterus keep her in a permanent, childlike state? If they wanted to keep her a small "pillow angel", they would have had to remove the pituitary gland which is the gland which secretes growth hormone, the hormone responsible for human growth.

Even removal of the ovaries would have prevented the production of estrogen---a hormone that does have some developmental growth properties---but more along the lines of sexual growth and physiological development--not "size" growth and development.

her from menstruating. I am not sure if that would also stunt growth.
I imagine Drs. who performed these procedures would know better why the procedures would stunt her growth.

Well, I'm sure that's news to all the molested children out there. Jayzus H.

who sees absolutely no logical point being made with regards to no menstruation = no sexual abuse....

We agree, I see now.

Somehow it must make sense to them.
And since they found the Drs. to carry it out somehow it made sense to the Drs. too.

It makes it even sicker.

And you are repeating their illogical arguments for why the surgery was performed and you are doing so, obviously, without understanding the very basic principles behind human growth and development and how neither a uterus or breast play any part it them.


You also suggest at least twice in this thread that no uterus and no breast = less risk of sexual abuse, yet cannot provide a logical argument behind that fact. If no uterus & no breasts = no sexual abuse, then no woman who is post menopausal or post-hysterectomy would be abused. No woman with underdeveloped breasts would be sexually abused. No child who has not reached menarche would be sexually abused. Obviously these facts fly in the face of the logic you are supporting in this thread.

I would suggest that someone should have a basic modicum of facts before they support and parrot these parents arguments--they are illogical and not based on any basic understanding of the basic, high-school level facts of human biology, anatomy, and physiology.

these procedures. If these procedures aren't going to accomplish anything, do explain why the Drs., who spend years studying human biology, anatomy and physiology, agreed to do them?
How many years did you spend studying human biology, anatomy and physiology, by the way?

And I have spent a total of 6 years in college studying anatomy, physiology, biology, biochemistry, and chemistry (as well as a host of other classes) in relation to my final degree in nursing. In addition to college-level classes which I not only passed individually but also left school with an overall GPA of 3.7. Not only did I excel at my individual classes and graduate amongst the top of my graduating class, but I am a practicing RN and as a requirement of my job (although not a requirement of my nursing license granted by the state of Washington), I continuously take continuing education classes at my place of employment and with various institutions of higher learning in my area.

Before I worked as an RN, I worked at a cancer research center in Seattle and took around 132 didactic hours of education directly regarding ethical considerations in nursing and medicine and how they relate to the most vulnerable of our society--the unborn, the pregnant, prisoners, the mentally and physically handicapped, the child, the adolescent, the adult, and the elderly. I specifically spent numerous hours dedicated to coursework related to ethical and legal considerations of institutionalized individuals--the young and the old--prisons, orphanages, foster homes, and nursing homes just to name a few.

As for why the doctors did this--I have no idea. It is evident that what they did was unethical and they did not follow proper protocols when they not only considered but also when they performed the surgery. They admit that they did not follow their own protocols with regards to consulting with an ethics committee to investigate the family, the patient, and the true motivations and reasonings behind the need/desire for this surgery. Also, University of Washington was the only hospital that would perform this surgery because all other hospitals visited by the parents REFUSED on ethical grounds--the other hospitals FOLLOWED protocols in effect for such cases--where the rights of the parents must absolutely be weighed against the rights of the child or dependent adult.

ethics committee, why does it say "hospital's ethics committee supported the treatment, which included hormone therapy, but noted before the surgeries that court review would be required."

That means that the hospital ethics committee came back with a decision that was opposed to what hospitals are supposed to do. This is what Heddi is trying to tell you,

Just because an ethics committee makes a decision, that doesn't mean it is necessarily ethical. Sounds odd to say, but it's true. And I trust an RN on these kinds of things. They typically know more than the rest of the damned hospital about most things.

And apparently those doctors did, too.

and unable to participate in their care. These measures will allow them to keep her at home for much longer for family to care for her. The family apparently trusts each other not to abuse her sexually.

I've taken care of total-care patients. It's exhausting work, and alot of it has to do with their size, weight, etc.

But I see your points, it's just that the rationale wasn't explained.

Colds, flu, etc in an immobile person can create life-threatening pulmonary infections, etc. She may also get a DNR order after she reaches a certain age.

very difficult to manage-physically.

And, no, it will not stop abuse.

at all. none. The uterus is an organ. It does not produce or excrete hormones that are related to human growth and development in any way. None. It is not an endocrine OR exocrine gland.

That is just the basic fact of human anatomy and physiology.

And they also removed her appendix, because she cannot communicate pain.

The entire story is both sad and horrific, and I wonder what will happen to Ashley when, as is inevitable, her parents pass away.

she will be made a ward of the state and ultimately placed in an institutional-type setting--it may not be a quote-unquote 'institution' but perhaps a group home or nursing home type situation (which is often considered to be 'institutional' depending on the literature and the author).

It is distressing that the University of Washington was so complicit in this unethical surgery. I cannot imagine what their punishment will be (punishment for the hospital, I mean). Because UW is also a research facility, they are under much higher scruitiny than the regular run-of-the-mill community hospital. I imagine that many of their research grants and federal/state grants will dry up as a result of this---how can research grants be given with a clear conscience when it is evident that such a basic protocol--consulting the ethics committee--is so brazenly overlooked in this case. Were I a researcher, I would have serious doubts as to what other ethics UW is willing to 'overlook', and would most likely be looking at another research / educational facility to meet my needs.

It says "The hospital's ethics committee supported the treatment, which included hormone therapy, but noted before the surgeries that court review would be required."
So they did consult an ethics committee.

it prevents the one hugely obvious consequence (pregnancy) of abuse. Instead of actually doing something to prevent abuse they're doing something to prevent evidence of abuse. THAT is why it's deplorable. Can you see the twisted logic there?

I'd like to note that I'm not specifically referring to the girl referred to in the OP, I'm talking about mentally handicapped women in general.

needing special equipment (lifts, etc) that help the caregivers and prevent back injuries to them. Keeping her at home with family might be the best way to prevent molestation.

Menstruation is only one aspect, but after taking care of the toileting needs of my autistic son until he was almost seven, it is a huge relief to remove even one task that might have to be performed six times a day, five or six days a month.

Removal of the breast buds will help control her discomfort and prevent infection (skin care problems from having pendulous breasts) and prevent breast cancer, which runs in her family. (this info was in a previous article)

The less active you are, the worse cramps tend to be - imagine someone with the mental capacity of an infant having to suffer through severe cramps (not being able to communicate pain, doesn't mean you don't feel it) or the other discomforts that can come with your periods.

These parents did not act rashly and I believe they did what they think was best for Ashley.

are concerned about...

I read an article about this and the parents are concerned that if one point they are unable to care for her and she ends up in an institution they did not want her to remain fertile...so that if she were abused she would not get pregnant.

Additionally in her state having a period every month might be traumatic to her (that is the parent's opinion).

.........Ashley's doctors touched of a highly charged ethical debate when they wrote about her treatment in October's Archives of Pediatrics & Adolescent Medicine. Some critics decried the parents' actions as perverse and akin to eugenics. Her parents maintained that keeping her small would make her more comfortable and allow them to move her more easily and take better care of her.

On their blog Tuesday, Ashley's parents praised the vigilance of the advocacy group that investigated the case. But they also said they hoped requiring court orders in such cases would not create obstacles for parents seeking the best care for their disabled children.

"As responsible and loving parents, deeply concerned for the well-being of our child, we provided a better quality of life to our Ashley, who is doing very well under our love and care," they wrote. "We hope that other families of the many children like Ashley will likewise be able to care for and benefit their children without undue obstacles."

"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 6-year-old," said Curt Decker, National Disability Rights Network 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."

---

On the Net:

Washington Protection and Advocacy System

Ashley's parents' blog

Archives of Pediatrics & Adolescent Medicine

http://archpedi.ama-assn.org/cgi/content/short/160/10/1013

Attenuating Growth in Children With Profound Developmental Disability

A New Approach to an Old Dilemma

Daniel F. Gunther, MD, MA; Douglas S. Diekema, MD, MPH

Arch Pediatr Adolesc Med. 2006;160:1013-1017.

Caring for children with profound developmental disabilities can be difficult and demanding. For nonambulatory children with severe, combined neurologic and cognitive impairment, all the necessities of life must be provided by caregivers, usually parents, and these tasks become more difficult as the child grows to adolescence and adulthood. Many parents would like to continue caring for their child with special needs at home but find it difficult to do so as the child increases in size. If growth could be permanently arrested while the child was still small, both child and parent would likely benefit because this would facilitate the option of continued care in the home. Treatment of the child with high-dose estrogen, initiated at an early age, could provide this option. High-dose estrogen both inhibits growth and rapidly advances maturation of the epiphyseal growth plates, bringing about permanent attenuation in size after a relatively short period of treatment. We present a case report and discuss the medical and ethical considerations of such an intervention strategy. We suggest that after proper screening and informed consent, growth-attenuation therapy should be a therapeutic option available to these children should their parents request it.


Author Affiliations: Division of Pediatric Endocrinology (Dr Gunther) and Center for Pediatric Bioethics (Dr Diekema), Department of Pediatrics, Children's Hospital and Regional Medical Center, University of Washington School of Medicine, Seattle.


RELATED ARTICLE

Growth Attenuation: A Diminutive Solution to a Daunting Problem
Jeffrey P. Brosco and Chris Feudtner
Arch Pediatr Adolesc Med. 2006;160:1077-1078.
EXTRACT | FULL TEXT


THIS ARTICLE HAS BEEN CITED BY OTHER ARTICLES

Growth Attenuation: Unjustifiable Non-therapy
Bersani
Arch Pediatr Adolesc Med 2007;161:520-521.
FULL TEXT ........more........

I posted some other nursing considerations in caring for a person that is completely disabled.

It is very hard difficult,physical work caring for someone who is bedridden and unable to participate in their own care. There are many considerations, such as preventing bed sores, keeping skin clean and dry after elimination, protecting the caregivers from back injury during caregiving.

...Not many parents would be able to handle something like this. I look at my situation, caring for my son who has Down Syndrome, and feel very lucky. He has a solid chance, but unfortunately, Ashley doesn't and being cared for by her parents does seem like a much better option.

I can't say what I would do because I have not had to walk down this path...

However I can understand why the parents did what they did.

I like to think of historical perspectives regarding issues like this...

In ancient times it was not uncommon to "euthanize" children who were severely handicapped if they survived their birth..
Over 100 years ago she would have been locked away in a family attic or in an institution...and no one would talk about her...
Today...people are more accepting and her parents can care for her at home...the shame of having a handicapped child is gone..(this is a good thing!)...but they are trying their best to make it easier to care for her and to make things better for her... I just can't imagine that I have any right to pass judgement upon these folks.

The parents and doctors did what they thought was best for this particular child. What's best for her may not apply to others; what's best for others may not apply to her. These particular circumstances are fortunately very rare. We may want to ensure that such procedures are reviewed, but then who selects the reviewers? Our inclination is to trust the primary caregivers to have the child's best interests in mind. There are a dozen what-if questions that could be posed about such cases, but I will not ask them lest this thread descend into a flame fest.

So much lighter and she'd act her age.

Sorry but, I think this person who can't live on her own or understand her surroundings, and never will be able to, should have her soul freed.

The desire to keep the girl's body prepubescent and small, the desire to keep her infertile, the desire to keep other caregivers out of the equation? Kinda screams pervert to me. :shrug:

Why would anyone want her fertile?
Geez.

It's all the other stuff that gives that creepy pervert vibe to the whole thing.

These parents have two other children who are developing normally. It got to be extremely difficult to care for a child that severely disabled.

I still think the whole thing is creepy as all hell.

I just don't see how justice can be applied here. Personally, and from what little I know from the article, the parents did right. It must have been a truly difficult decision.
I hope this does not go to court but there always may be some opportunistic a_____e who may want to make a name for themselves.

using the same reasoning (and it would be "easier" to "care" for me if I was smaller)...

Disabled people have rights. These rights are the same as every other human's rights. One of those rights is not to be physically mutilated for the convenience of others.

Caregivers -- yes, even parents-- are often the source of abuse and denial of rights. In fact much abuse of disabled persons occurs at the hands of their family (disabled kids are abused by family members more often than nondisabled kids are, and we all know the frequency of child abuse is bad enough as is). This abuse takes many forms other than straightforward beatings and isolation. Among the myriad forms of abuse directed at disabled people are both denial of essential medical care, and unnecessary and dangerous medical care.

Yep, doctors too are a source of abuse. Take a look at the kinds of things that were done by doctors to disabled people "legally" before protections started to be put into place. Take a look at some of the kind of crap that doctors are still being hauled to court over (such as the multiple cases where MDs have killed autistic children with highly dangerous, discredited treatments such as chelation).

That's why what happened to Ashley is a civil rights issue, not the exclusive concerns of the "family". That's why disability rights and civil rights activists fought so hard to put in place the very restrictions that were flaunted in the Ashley X case.

Do you think parents have an unfettered right to do anything they want to their nondisabled children? Or is it only those of us who are disabled who should be denied the protection of the courts against child abuse?