More on Ashley: No Due Process

Now the federally authorized Washington Protection and Advocacy System (WPAS), a state organization to prevent abuse of the disabled has investigated the Ashley case and have come out with their conclusion. Here is an excerpt from the Executive Summary as released by WPAS. Seems clear cut.. or is it? Please also read another view in an Addendum to my blog which follows the WPAS document. Also you may want to go to this link for my original posting in Jan. 2007 about the Ashley case. ..Maurice.



Executive Summary
• The Washington Protection and Advocacy System (WPAS) is the federally
mandated protection and advocacy (P&A) agency for the state of
Washington. The P&As, which exist in every state and territory, are
“watchdog” agencies with legal authority under federal statutes to
investigate allegations of abuse and neglect of persons with disabilities and
to advocate for their legal and human rights.
• Pursuant to its federal authority, WPAS initiated its investigation of what
happened to Ashley in regards to her “Ashley Treatment” after publication of
a medical journal article describing the medical interventions provided to a
young child with developmental disabilities and suggesting it might be
appropriate for others. WPAS also received numerous complaints after
widespread media coverage of the situation.
• Ashley is a girl with developmental disabilities who was six years old at the
time the interventions began. The intervention included surgical removal of
her uterus and breast buds, as well as high-dosage hormone therapy to limit
her growth and physical sexual development.
• The Washington Supreme Court has ruled that when a parent or anyone
else seeks to sterilize an incompetent individual with a developmental
disability, the individual must be afforded due process and a multi-factored
test must be proven by clear and convincing evidence before a court can
authorize the sterilization.
• The “Ashley Treatment” was conducted by physicians at Children’s Hospital,
at the request of Ashley’s parents and after review by the Hospital’s Ethics
Committee. There was, however, no court order sought or obtained before
the sterilization portion of the “Ashley Treatment” was performed.
• FINDINGS: The sterilization portion of the “Ashley Treatment” was
conducted in violation of Washington State law, resulting in violation of
Ashley’s constitutional and common law rights.
o The Washington Supreme Court has held that a court order is
required when parents seek to sterilize their minor or adult children
with developmental disabilities, and that the individual must be
zealously represented by a disinterested third party in an adversarial
proceeding to determine whether the sterilization is in the individual’s
best interests.
o Courts have also limited parental authority to consent to other types
of medical interventions that are highly invasive and/or irreversible,
particularly when the interest of the parent may not be identical to the
interest of the child. Thus, the other aspects of the “Ashley
Treatment” – surgical breast bud removal and hormone treatments –
should also require independent court evaluation and sanction before
being performed on any person with a developmental disability.
o The implementation of the “Ashley Treatment” also raises
discrimination issues because, if not for the individual’s
developmental disabilities, the interventions would not be sought.
Such discrimination against individuals because of their disabilities is
expressly forbidden by state and federal law.
• The violations appear to have occurred as a result of:
o a lack of policies at Children’s Hospital regarding the
sterilization of minors with developmental disabilities;
o an opinion of Ashley’s parents’ counsel that no court order
was required. This legal opinion was not supported by
Washington law;
o reliance upon that opinion by doctors at Children’s Hospital
and the mistaken belief that the opinion of Ashley’s parents’
counsel constituted a “court review;” and
o insufficient internal controls at Children’s Hospital to ensure
that Ashley’s independent legal interests were protected.
• As a result of the WPAS investigation, Children’s Hospital has agreed to
take the following corrective actions:
o Develop and implement a policy to prohibit sterilizations of persons
with developmental disabilities without a court order. The policy will
assure that all appeal periods and appeals, if any, are exhausted
before any procedures are performed;
o Improve internal controls and oversight to insure that no sterilizations
can take place without the necessary court order; and
o Give notice to WPAS of requested sterilization of persons with
developmental disabilities so that it can continue to act as a
watchdog on behalf of individuals with disabilities.
• Additionally, Children’s Hospital has also agreed to take the following
additional steps to protect the rights of children with developmental
disabilities for whom the “Ashley Treatment” or other growth-limiting
interventions are sought:
o Develop and implement a policy to prohibit growth-limiting medical
interventions on persons with developmental disabilities without a
court order. The policy will ensure that all appeal periods and
appeals, if any, are exhausted before any procedures are performed;
o Give notice to WPAS of requested “Ashley Treatment” and other
growth-limiting interventions of persons with developmental
disabilities so that it can continue to act as a watchdog on behalf of
individuals with disabilities; and improve internal controls and
oversight to assure that no such procedures can take place without
the necessary court order. To the extent that it is medically viable, the
policy will include provisions to monitor the prescriptions for high
dosages of hormones that the Hospital’s pharmacy has been asked
to fill; and
o Include a disability rights advocate on the Hospital’s Ethics
Committee. The Committee will also bring in experts in particular
relevant areas as it relates to medical care and interventions for
individuals with developmental disabilities, as appropriate.
• NEXT STEPS: In order to continue advocating for the rights of people with
developmental disabilities for whom sterilization or growth-limiting
interventions may be contemplated, WPAS will:
o work with Children’s Hospital in ways identified in Section V of this
Report and monitor the implementation of the Agreement between
Children’s and WPAS;
o conduct outreach to courts and guardians ad litem to advise them of
WPAS’s availability to provide technical assistance to guardians ad
litem and/or representation for children with disabilities for whom a
court order is being sought to perform a sterilization, the “Ashley
Treatment,” or other growth-limiting medical interventions;
o provide technical assistance to other P&As and disability rights
related organizations throughout the country who wish to address
issues related to sterilization, the “Ashley Treatment,” or other
growth-limiting interventions for children with disabilities, and conduct
activities similar to those WPAS is doing in Washington State;
o participate in opportunities to educate the public on legal and other
issues related to sterilization, the “Ashley Treatment,” or other
growth-limiting interventions for children with disabilities, from the
perspective of the disability community;
o promote the availability of WPAS’s advocacy services to obtain
assistive technology to facilitate mobility and ease of providing
personal care where funding is required by law; and
o widely disseminate this report to various organizations and agencies
in an attempt to draw attention to the need to take proactive
measures to protect individuals with developmental disabilities.
WPAS will also collaborate with our partners in the disability
community to:
o identify and promote the best candidates who have a “disability
perspective” for participation in hospital ethics committees around the
state;
o conduct outreach to hospitals throughout the state to encourage
them to adopt policies similar to the ones being developed for
Children’s;
o develop a strategy for reaching and educating doctors who may be
considering providing high doses of hormones for the purpose of
growth attenuation of individuals with developmental disabilities on
an outpatient basis in their offices and without the involvement of any
hospital;
o create and disseminate educational materials and make
presentations to train doctors, medical students, members of hospital
ethics committees, judges, guardians ad litem, lawyers, law students,
people with disabilities and parents of people with disabilities on legal
and other issues related to sterilization, the “Ashley Treatment,” and
other growth-limiting medical interventions for children with
developmental disabilities from the perspective of members of the
disability community;
o work with agencies involved in certification, accreditation, and
licensing of hospitals and health care providers to assure that
standards, criteria and requirements related to the provision of
sterilization, the “Ashley Treatment,” and other growth-limiting
medical interventions for children with disabilities are clear,
consistent with the law, and communicated to those who need to
know;
o work with health insurance companies operating in Washington State
and around the country to assure that their policies for reimbursing
costs of the “Ashley Treatment” and other growth-limiting medical
interventions for individuals with developmental disabilities are clear,
consistent with the law, and communicated to those who need to
know;
o work with the disability community in Washington State and around
the country to identify and advocate other ways to restrict the
performance of the “Ashley Treatment” and related growth-limiting
medical interventions for children with disabilities to the furthest
extent possible;
o to the extent necessary, seek the means necessary to accomplish
the above in a timely manner; and
o work with people on every side of the debate to join together to
improve the services and supports for children with disabilities and
their families.
To view the complete Investigative Report Regarding the “Ashley Treatment”,
please see www.DisabilityRightsWA.org. To receive this document in an
alternative format, please contact DRW Administrator Jessica McDaneld at
206-324-1521 or TTY 206-957-0728.

ADDENDUM TO THIS BLOG 5-11-2007: Two days ago, Douglas S. Diekema MD from the Department of Pediatrics, Children's Hospital and Regional Medical Center,
Seattle, WA wrote the following post to a bioethics listserv. In order to provide another view and further details of the Ashley issue, I am posting Dr. Diekema's writings here with his specific permission. ..Maurice.


"There seems to be some misinformation regarding the findings of the WPAS
investigation in the Ashley case. Read the documents related to the WPAS investigation. Both the report and the accompanying
ethics committee minutes recognize that the ethics committee made the
determination that the procedures being requested by Ashley's parents appeared to be ethically acceptable, but that we could
not speak to whether a hysterectomy would be legal given CASE law in Washington
State and the family was told to seek a court order. The problem occurred because the family sought an opinion from a
disability rights lawyer (who himself has a disabled child) who felt that the
facts were sufficiently different from the case law that a court order was not required. The surgeon and
medical director,
when confronted with the lawyer's letter and not being lawyers themselves, made
the assumption that
this was sufficient--a mistake I think someone who is a lawyer could very easily
make. Bear in mind,
that since this is case law, you can't just look at the Revised Code of
Washington to get the answer to this question.

The WPAS report does NOT extend to determining whether the treatment of Ashley
was ethical or not (and in fact the investigation did not include any discussion with members of the ethics committee), but
only provides the opinion of WPAS as to whether any law (in this case case law)
was violated.

I agree that placing advocates on ethics committees is a very bad idea. The WPAS
report specifically refers to disability rights advocates, rather than someone with a disability perspective or someone with
a disability. There is a difference, since advocates frequently come with a
predetermined agenda.

Finally, perhaps the most disturbing part of the report is that in the opinion
of WPAS, treatments that are highly invasive or irreversible require a court order in a developmentally disabled child before they
are performed (this includes growth attenuation). By that reasoning, however, I
would also think it should include growth hormone treatment of children with Turner's syndrome (given to make them taller) and osteotomies and tendon releases (invasive and irreversible) and lots of other procedures (tracheostomies and g-tubes are certainly invasive). That's starting to look like a lot of court orders and sends a message of incredible disrespect to the parents of these kids.

Doug

Douglas S. Diekema MD, MPH
Treuman Katz Center for Pediatric Bioethics
Department of Pediatrics
Children's Hospital and Regional Medical Center
Seattle, WA"