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Tuesday 8 May 2007

Info Post
I will do more than simply post the links on this soon, but the news for now from the Washington Protection and Advocacy System (soon to be Disability Rights Washington - DRW):
Many people with disabilities have expressed great concern over the use of invasive medical procedures used to keep a young child with disabilities small. As reported at great length, parents of a six-year old girl named Ashley asked doctors at Seattle Children’s Hospital to give Ashley high doses of hormones, and remove her breast buds and uterus.

Pursuant to its PADD federal mandate, the Washington Protection and Advocacy System (WPAS) used its federally granted access authority to initiate an investigation into the use of the “Ashley Treatment.”

The investigation revealed that legal the rights of the child were violated when the hospital involved proceeded with the hysterctomy portion of the treatment without a court order first being obtained.

The hospital acknowledges its mistake and has agreed to implement many procedures to prevent similar legal violations from happening in the future.

Please read the WPAS Investigative Report Regarding the “Ashley Treatment” for more information about what happened to Ashley and how to prevent it from happening to other children with disabilities.

Update: Ashley X's parents respond to today's report:
Parents of Ashley X's Position on the Legal Findings on Hysterectomy

As the loving parents of Ashley X we support the vigilance of WPAS in their effort to protect the vulnerable members of our society.

In 2004 Ashley X was indeed given a hysterectomy without a court order. Prior to the surgery, we had consulted with a disability lawyer and learned that the state law, which is intended to protect the rights of the disabled to procreate, did not apply to Ashley's case since:

1- Given Ashley's developmental state and prognosis, which is well-documented by her doctors and was reported to the Ethics committee, voluntary procreation is not meaningful or applicable to her case and will never be.

2- Sterilization is not the intent of the Ashley Treatment but a byproduct of it

While we support laws protecting vulnerable people against involuntary sterilization, the law appears to be too broadly based to distinguish between people who are or can become capable of decision making and those who have a grave and unchanging medical condition such as Ashley, who will never become remotely capable of decision making. . Requiring a court order for all hysterectomies performed on all disabled persons regardless of medical condition, complexity, severity, or prognosis puts an onerous burden on already over-burdened families of children with medical conditions as serious as Ashley's.

As responsible and loving parents, deeply concerned for the wellbeing of our child, we provided a better quality of life to our Ashley, who is doing very well under our love and care. 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.

We appreciate your continued support, prayers, well wishes, and respect of our privacy.

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