NCIL Condemns Abuse of Ashley X

March 27, 2007

The Honorable Michael Leavitt, Secretary
U.S. Department of Health and Human Services
200 Independence Avenue, S.W.
Washington, D.C. 20201
Sent via Facsimile: (202) 690-7203

Dear Secretary Leavitt:

I am writing on behalf of the National Council on Independent Living (NCIL) to express our grave concerns about the mistreatment and abuse of the nine year-old girl, known as Ashley X, whose parents stopped her growth at age six using an experimental procedure removing her uterus, appendix, and breasts buds, then treating her with high doses of estrogen to stunt her growth– for their own convenience. This case illustrates a blatant disregard for human life. It also highlights the increasing need for community-based long-term services and supports for children and adults with disabilities and their families. We urge you to reverse the trend of flat funding for programs that not only enable Americans with disabilities to live full, productive lives in their community, but also provide information, referral, and direct services to parents of children with disabilities.

The NCIL is the oldest cross-disability, national grassroots organization run by and for people with disabilities. NCIL's membership includes centers for independent living, statewide independent living councils, people with disabilities, and other disability rights organizations. As a membership organization, NCIL advances independent living and the rights of people with disabilities through consumer-driven advocacy. NCIL envisions a world in which people with disabilities are valued equally and participate fully.

We question the ethics of Seattle Children’s Hospital medical staff and the hospital’s ethics committee that found it appropriate to mutilate a child with a disability rather than offer her parents information about services in their community that would provide health and mental health services for Ashley and her parents, respite care to family caregivers, and a range of other services that would have helped to increase the quality of life for Ashley and her family. From descriptions in the press and on her parents’ Web site, Ashley appears to be treated as a family doll. Worse yet, her parents describe her as their pillow angel.

For nearly fifty years, disability rights groups and the Independent Living movement have fought for an equally accessible society for people with disabilities. We have fought for community-based services rather than institutions, independence rather than dependence. These measures help save government funds by giving people what they want: to live in their home. Personal care attendant services and assistive technology are among but a few resources Ashley’s parents and doctors should have considered before taking these drastic and devastating measures.

We also ask that the U.S. Department of Health and Human Services investigate the lack of action by child protective services and others mandated to prevent child abuse. Children with disabilities ought to be afforded the save level of protection as children without disabilities. For this reason, NCIL encourages collaboration between the child maltreatment and disability communities, and increased public education about the increased risks children with disabilities face.

Ashley X’s parents cited the cost of caregiving as one of the many reasons why they chose to conduct this experimental procedure on their then 6 year-old daughter. We urge you to work with Congressional appropriators to argue for increased funding for Medicaid, Medicare, and Independent Living, among other programs that are designed specifically to help Americans remain healthy and productive.

Thank you for your consideration. If you have any questions, please do not hesitate to contact Deb Cotter, of my staff. Deb can be reached at Deb@ncil.org or (202) 207-0334.

John Lancaster                                            Kelly Buckland
Executive Director                                        President