Ashley Treatment- Update

The Roving Activist has an update on her blog on the Ashley X issue. Some ADAPT activists protested a presentation by the Head of the Seattle Children's Hospital's Institutional Review Board (which makes decisions on medical research and experimentation).

Ashley X Update

The Federal Government has finally weighed in on the Ashley Treatment issue. Read on and see what you think....
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HHS Response Regarding the "Ashley Treatment"

Dear Readers,

The letter that follows is from the U.S. Department of Health
and Human Services and comes in response to a letter of concern
written by Kelly Buckland and John Lancaster of the National
Council on Independent Living regarding the growth attenuation
treatment, breast bud removal, and hysterectomy of "Ashley" a
nine year-old girl from Washington.

To read more about Ashley and the so-called "Ashley Treatment,"
visit AAPD's website at:
http://www.aapd.com/News/bioethics/indexbioethics.php
________________________________________________________________

Department of Health & Human Services

May 30, 2007

Kelly Buckland, President
John Lancaster, Executive Director
National Council on Independent Living
1710 Rhode Island Avenue, NW, 5th Floor
Washington, D.C. 20036

Dear Mr. Buckland and Mr. Lancaster:

Administration for Children and Families
Office of the Assistant Secretary, Suite 600
370 L'Enfant Promenade, S.W.
Washington, D.C. 20447

Secretary Leavitt has asked me to thank you for your letter
expressing concern about the disabled nine-year-old child known as
Ashley X. We agree that the well-being of children with
disabilities is of paramount importance.

Secretary Leavitt uses a 500-Day Plan as a management tool to
guide our Department's energies in fulfilling the President's
vision of a healthier and more hopeful America. In that plan, the
Secretary has a section called "Protect Life, Family, and Human
Dignity," which includes priorities that "Children are protected
from abuse and neglect" and "Seniors and persons with disabilities
are cared for with dignity and respect." Children with
developmental disabilities, including Ashley, are human beings
with inherent human dignity, and they are due all the rights and
respect that come with that status.

That is why the Department of Health and Human Services, through
the Administration on Developmental Disabilities within the
Administration for Children and Families, funds 57 protection and
advocacy (P&A) systems in the states and territories to protect
the civil and human rights of individuals with developmental
disabilities. The Washington Protection and Advocacy System opened
an investigation in January 2007 into the "Ashley Treatment"
interventions and the role of Seattle's Children's Hospital. On
Tuesday, May 8, 2007, the P&A released the findings of that
investigation. You may view the findings and entire report on the
Washington P&A website:
www.disabilityrightswa.org/news-1/ashley-treatment-investigation

I hope this information is helpful to you. Please call me if I can
be of further assistance.

Sincerely,

Daniel C. Schneider
Acting Assistant Secretary for Children and Families

Source: U.S. Department of Health and Human Services
________________________________________________________________

For more news issues, see:
http://www.aapd.com/docs/news.php


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Margaret Mead once said that it only takes a few people to change the world. That is so true, today and everyday. It is applicable in this situation, as a few diligent disability advocates have been following this story, investigating the legality of the situation, and have put a few people's feel to the fire.

Maybe the next time someone gets an idea like 'the Ashley Treatment' they will hestitate, and think twice...

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The Washington Protection and Advocacy System (soon to be Disability Rights Washington - DRW), opened an investigation in January 2007 into the "Ashley Treatment" interventions and the role of Seattle's Children's Hospital. Today, they released their findings of that investigation.

The view the full report, complete with appendix items, please visit our website www.DisabilityRightsWA.org .

You should know:

1. Children's Hospital violated Washington state law in performing the hysterectomy portion of the "Ashley Treatment " which resulted in the violation of Ashley's constitutional and common law rights;

2. The Hospital has acknowledged the violation and accepted full responsibility;

3. The Hospital has entered into an enforceable, written five (5) year agreement with WPAS to take corrective action and other proactive steps; and

4, We have included a list of next steps in the Executive Summary that we hope will be a part of a nationwide collaborative effort of the disability community that will result in Ashley being the last person to receive "treatment" named for her.

Seattle Children's Hospital acknowledged the following in our five (5) year, enforceable agreement:

"Children’s has received and reviewed the WPAS report on Ashley and the treatment she received. In general, Children’s accepts the WPAS report. Specifically, Children’s agrees with the finding in the report that Ashley’s sterilization proceeded without a court order in violation of Washington State law, resulting in violation of Ashley’s constitutional and common law rights. Children’s deeply regrets its failure to assure court review and a court order prior to allowing performance of the sterilization and is dedicated to assuring full compliance with the law in any future case."

Some of you may think having a court order is a procedural matter easily overcome. That is not the case. We encourage you to carefully read the legal requirements section of our report to gain a full understanding of this critical safeguard of the rights of children for whom this treatment may be proposed.

If you are wondering about the applicable law in your state the first appendix section includes contacts from many states who have agreed to share their knowledge of the law in their states.

Let us know if you have any questions.

Mark Stroh, Executive Director
Washington Protection & Advocacy System*
315 - 5th Ave South, Suite 850
Seattle, WA 98104
mstroh@wpas-rights.org
ph: (206) 324-1521 / 800-562-2702
tty: (206) 957-0728
fax: (206) 957-0729

Ashley Hearing & Emilio Gonzales Decision- 9am tomorrow May 8th

Below, you will find several important updates, including events occurring TOMORROW, Tuesday, May 8th, regarding both Emilio Gonzales in Austin, TX and Ashley X in Seattle, WA. The first update and call to action is in reference to a 9am hearing for Emilio that takes place tomorrow morning. The second is in regard to a report due to be released tomorrow by the Washington Protection and Advocacy System that reveals how the Seattle Childrens Hospital broke the law when it performed Ashleys hysterectomy.
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The following update and call to action comes to AAPD from Bob Kafka (Not Dead Yet of Texas, ADAPT
Advocates: The life and death struggle of Emilio is now in the hands of the Court.

There will be a hearing on Tuesday, May 8th at 9am, CourtHouse, Room 201 (Between 11th and 12th St just west of Gualadupe) Austin, Texas. The legal issues are complex but it is believed if Emilio had a tracheotomy he could leave the hospital and be with his mother and die in a more dignified setting. If you are on a respirator or your child is, please come to the Court House and show that living on a respirator in the community is possible.

If you support the rights of people with significant disabilities please attend this hearing. This is a human and disability rights issue. Doctors should not be able to override our expressed wishes. Ironically the Catholic Church (Sisters of Charity run the hospital) and the Austin Bishop are supporting the killing of Emiliio. Orwellian speak has made them describe treatment of Emilio as "prolonging dying" rather than what it is "infanticide."Protecting the zygote seems more important than protection of the life of a 17 month child. Doctors are not infallible and should not play _ _ _ !

Please come to the Court House on Tuesday and support Emilio.
SOURCE: NOT DEAD YET of Texas ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The following update comes to AAPD from Amber Smock of Feminist Response in Disability Activism (FRIDA)

Thanks to Steve Drake of Not Dead Yet, FRIDA has learned that the Washington Protection and Advocacy System found that Seattle Children's Hospital failed to secure a court order for Ashley X's hysterectomy. (Please read below for the full announcement.) The report will be released on Tuesday. FRIDA thanks the WPAS for their exposure of this systemic breakdown. We encourage anyone who may be in the area on Tuesday to go to Seattle Children's for the report release at 10 am PST to represent for our community.FRIDA
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Thursday, May 03, 2007

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

SEATTLE, WA - An investigative report released today by the Washington Protection and Advocacy System* (WPAS) 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. This resulted in a violation of Ashley's constitutional and common law rights. 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 additional steps to protect the rights of their patients with developmental disabilities.

WHAT: Release of WPAS' Investigation Report into "Ashley's Treatment" & Discussion of the Children's Hospital Response***also available to interview are disability advocates, parents of children with disabilities, and hospital officials***

WHO: David Carlson, WPAS Associate Director of Legal Advocacy;
Deborah A. Dorfman, WPAS Dir. of Legal Advocacy and Assoc.Executive Director;
Dr. David Fisher, Children's Hospital Medical Director;
Gail Lainhart-Rivas, Parent;
Corinna Lang Fale, SelfAdvocate;
and Curt Decker, Executive Director National DisabilityRights Network (NDRN) based in Washington, DC.

WHEN: 10:00 a.m. PST - Tuesday, May 8, 2007

WHERE: Auditorium, Seattle Children's Hospital and Regional Medical Center, 4800 Sand Point Way NE Seattle WA 98105
Park in Giraffe garage and check-in at Giraffe entrance
For the Main Campus directions, visit:www.seattlechildrens.org/home/about_childrens/maps_directions/

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 advocacyagencies, WPAS is changing its name to Disability Rights Washington effective June 1, 2007.315 - Fifth Avenue South, Suite 850* Seattle, WA 98104tel: (206) 324-1521 * tty: (206) 957-0728 * fax: (206) 957-0729wpas@wpas-rights.org * www.wpas-rights.orgSource: FRIDA, Not Dead Yet

The Ashley Treatment and Bioethics

This is an interesting article, looking at the discussion around Ashley Treatment, and its ramification for journalism. As an American, we dropped the ball on this one-- the Brits are the ones who put it into the public forum, giving it light and air. However, the American activist community has been diligent in keeping this on the radar, and holding decision makers in the medical professions responsible for devaluation of lives of people with disabilities.

We need to make sure journalist keep to their professional obligations of the public's right to know...

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After Ashley: Covering Children with Severe Disabilities
By Leann FrolaNaughton Fellow

The beginning of 2007 brought a new face to our TVs, computers and print media: Ashley. The 9-year-old who will never grow up. Ashley is developmentally and physically disabled. She has static encephalopathy [PDF], a condition that is the result of severe brain damage that will not improve. At her parents' request, doctors removed her uterus and breast tissue and gave her hormones to keep her small. Her parents say she will be easier to care for that way. As coverage continued, the debate grew fiercer and the sides more polarized with this basic question: Was it right to stunt her growth? But now the flurry of coverage has slowed. So I wondered -- how can journalists use what's been said to broaden the discussion about children with disabilities like Ashley's? What follow-ups could be written? How do we dig deeper than Ashley?

To find some answers, I turned to Arthur Caplan, Ph.D. He is the director of the Center for Bioethics at the University of Pennsylvania and a member of Poynter's national advisory board.

RELATED RESOURCES
"Enabling Coverage of Disability"By Susan LoTempio Ashley's blog, created by her parents

"Parents' Plan to Stunt Girl's Growth Sparks Debate"By Joseph Shapiro

" Is 'Peter Pan' treatment a moral choice?"By Arthur Caplan

In the following Q&A, Caplan shares what he thinks journalists have been missing and where to go from here. How do we go beyond what's already been covered about Ashley? I think Ashley's an interesting case. The policy questions are some of the things we need to be focused on, not just the odd or freakish nature of, "Is it right to keep somebody small?" Is what's right for this family right for other families? What's the context? Is this a trend or just the weird, odd story of the week?Families often can't get any home-care aid, but they wouldn't send their kid to a horrible institution. So a journalist could just ask around locally, what's going on? What might be causing the lack of home-care help for those with severely disabled kids? Is it a lack of money, lack of resources, lack of knowledge about how to access resources, or what? What needs to be done so that these families do get more assistance? And what happens to kids like Ashley if their parents abandon them or when the parents are too old to be able to care for them?

Journalism is attracted to wonderful stories and human interest, and that's what the Ashley story has. But it shouldn't be just that. Your second-day story should be these policy stories. Otherwise, there's a risk of turning the Ashley case into a kind of voyeurism.What else hasn't been covered? This is a good example where there's all kinds of voices that haven't been heard from yet. There are various disability groups that have positions on what was done to Ashley. Most of them don't like it -- independent-living groups, disability organizations ... I haven't seen many voices from the disabled community on this case.

All kinds of professional societies -- not the same as the patient-advocacy groups -- they're people who are going to make a living studying something as opposed to having that condition. I didn't see much from them. What does the AMA (American Medical Association) think or NAMI (National Alliance on Mental Illness) about all this? Then there are different caregiver groups, some of which deal with severely disabled children or elderly patients -- people who've had strokes or aneurysms. It'd be interesting to hear what they have to say.

Another issue that did not get much attention: What's the simplest way to keep somebody small? Just don't feed them as much. Caloric restriction is a way a lot of people have dealt with the problem Ashley's facing. Then there's a fine line between keeping people well nourished and starving them.I haven't seen one word about caloric restriction, which means journalists haven't been digging that deep.So that tells me that when people run into these kinds of stories, they tend to be completely dominated by the people who are blogging and by the charms or failings of the particular family. But there's not a lot of context given in that kind of coverage: Have other families dealt with this? What do disabled people think about this? What do doctors and experts think about this? What is the cheapest place to care for an Ashley? What if the parents abuse her if she is at home -- will anyone know?

So it's been a very narrow slice on the Ashley case.There's also some other things that've been said. The parents want to keep her home. Keep her home from what? An institution? What I'm getting at there is, are institutions for kids like Ashley horrible? Wonderful? Fine? Cesspools? Snake pits? You know, what are they? Do they vary from state to state?It's a hard question to ask, but it's one a good, enterprising journalist would ask: Is it better to keep her at home? And what are the institutional options that are out there? What's out there for taking care of severely disabled kids like Ashley?What's at cost? Do we want someone like Ashley to stay home because it'll cost the rest of us a whole lot of money? Is it cheaper if her parents are willing to take this on? What's the financial side of all that anyway? I haven't seen anybody raise one word about money. Conversely, or related to this, when the parents of kids like Ashley [die], who takes care of them then? Does it matter if they're smaller? In other words, there's another issue out here. Are these kids going to be just kept small while their parents are there? But what happens to them when their parents are gone? What happens to them?The parents, one of the things they said, they didn't want her to have breasts. How often are people who are in institutions attacked? If it is the case, that might be worth a little investigative story -- is it right to worry about it? Is it really the case that patients are assaulted by their caregivers? Do they screen people for sexual crimes?

So future coverage ideas:

a.. Look into the status of home care and institutional care for the severely disabled.
a.. Look into the financial burdens families face who try to care for a child at home.
a.. Look at the impact of having a severely disabled child on marriages and on siblings.

What do you think of the coverage so far? What's been done well? What needs work?I think the core debate over her has been well-covered -- the pros and cons. We got both sides of the ethics of the procedure. I think people have a good idea of why the parents did what they did. I think their story has been told pretty well. I don't think it's entirely clear what was done to her -- with hormones and things.

It's not that journalists didn't try, it's just you really gotta stay with that one.I think the coverage was also pretty good of the thoughtfulness of the parents. Journalists acknowledged it was hard for them to present and were sympathetic to that idea that it's tough to tell your personal story of life with a disabled kid. But they might have ignored that question of what's the best place for a severely disabled kid to be. That's the tougher question to ask.

How do you cover the complexities of a story like this one while still making the information understandable?I don't think that's so hard here. I think people get it. Here you're asking about institutional care -- what do other people who are disabled think about it. I don't think this is a technical thing.

How does running photos and videos of Ashley and her family affect the story and readers' reactions to it?It generates enormous sympathy. It's skewing the case that way. Anytime you've got picture access of the little girl, people are going to identify with that little girl -- more sympathy for the idea of keeping Ashley small. She looks cute, she's appealing. I think you have to [compensate] for that in the text -- making those who hate what was done to her heard. That's the balance that wasn't made. Not people who are caregivers -- real people with disabilities. Most of them don't agree with what they did to Ashley, just looking at e-mails from my columns. I got a fair number of people who don't like what's going on with her, and they tended to be disabled.

People who supported the family tended to be parents. It was strongly divided that way. Ashley's parents blog about their daughter's condition and their decision to keep her small. How influential were blogs in disseminating information about Ashley? How did audience interaction affect the story?They certainly made a difference on the story. There's a huge amount of blogging going on. But more than other stories, I don't know. They have a very big impact to drawing attention to the story, and seeing people debate it. It got a lot of people to vent their opinions ... and a lot of positive impact. Just people talking back and forth on what they thought.I think most people got their facts out of the news, then they just used the blogs to vent an opinion. I don't think they learned about it from blogs.How can journalists avoid exploiting or giving the appearance of exploiting someone like Ashley -- a developmentally and physically disabled child?She's completely incompetent. You really can't get away from some element of exploitation. That's just going to be a part of that story. A 9-year-old, severely disabled girl who can't give permission ... there's no other way to get around it. You start talking about getting more pictures, more balance, but no, I think you're just stuck. You're going to take advantage of her, and that's just how it is. And I don't think people were put off by it. I think people were pretty tasteful and respectful about writing about it.

What advice do you have for journalists covering a story like Ashley's who have a strong opinion about it?Drop the strong opinion. This is a very complicated issue, and you cannot bring any ethical or ideological baggage to it.You've written a column for MSNBC.com about Ashley, saying that you do not agree with her parents' decision to prevent her from growing. To what extent would you encourage other journalists who might not have your bioethical background to also write opinion pieces? I would encourage them. Once they learn about the story, they can surely make sound arguments pro or con, and this is a subject that is so new that it can greatly benefit from debate.Where can journalists covering Ashley and related stories turn for resources?Lots of places, but a good start are children's hospitals, state departments of disability, parent groups at public schools, and clergy who may have counseled families with severely disabled kids.Taking a step back to bioethics in general, what issues do you see brewing for 2007 that journalists should be aware of and plan ahead for?Watch out for the possibility of another face transplant this year. And keep an eye on avian flu -- that story will be coming back again.