On Monday January 26, the Autistic Self Advocacy Network, Not Dead Yet, and 13 other disability rights organizations filed a second amicus brief in a case defending the rights of people with disabilities to basic medical care.
Disability Rights Wisconsin filed the initial lawsuit, Disability Rights Wisconsin v. University of Wisconsin Hospital Centers et al., in 2009 after one thirteen-year-old died and one adult – both of whom had illnesses that were easily treatable – were denied care for treatable illnesses like pneumonia. University of Wisconsin Hospital physicians had advised families to withdraw antibiotics, nutrition, and hydration, citing their patients’ supposedly low quality of life as individuals with disabilities. When the teenager’s regular caregivers objected to withdrawing treatment, UWHC physicians allegedly encouraged the family to have him transferred to the University of Wisconsin Hospital, where he was taken off of antibiotics, nutrition, and hydration, and transferred to hospice care. He died the next day. In both cases, doctors had made assumptions about their patients’ “quality of life” without speaking to them or to the people they spent the most time with. They also had failed to seek approval from a court or hospital ethics committee.
“If these people hadn’t had developmental disabilities, there is no question that they would have been given this basic medical care,” said ASAN’s Director of Public Policy, Samantha Crane, who authored the brief. “Instead, these doctors used acute illnesses as an opportunity to take away the medications, food, and water that their patients needed to live. This essentially amounts to opportunistic euthanasia of people with disabilities.”
ASAN’s amicus brief was authored in collaboration with Not Dead Yet, a disability rights organization that advocates against legalization of assisted suicide, euthanasia, and non-voluntary denial of lifesaving treatment for people with disabilities. The brief argues that UWHC’s policies are emblematic of pervasive, nationwide medical discrimination against people with disabilities and that legal protections are necessary to protect vulnerable individuals from deadly denials of care.
“The concern that many of us with lifelong severe disabilities have is that children with disabilities are not receiving the same legal protection as nondisabled children,” said Diane Coleman, Not Dead Yet’s President and CEO. “A disabled child with parents who prefer to withhold medical care that would save the child, or who succumb to pressure from hospital doctors to withhold care, should not be permitted to deprive their child of a future just because the parents and doctor harbor common prejudices against life with disability.”
The Wisconsin Court of Appeals had rejected Disability Rights Wisconsin’s claim that UWHC doctors had violated patients’ rights under the constitutions of either Wisconsin or the United States, leading to this appeal to the Wisconsin Supreme Court. ASAN had filed an amicus brief with the Appeals Court in May. Under Wisconsin law, the Court can decide whether or not to accept the appeal for review.
Under Wisconsin law, parents of nondisabled children are required to provide medical care when necessary to save the child’s life. In 2013, the Wisconsin Supreme Court upheld the homicide convictions of parents who had failed to seek medical attention for their child, who died of untreated diabetes.
UWHC Ethics Committee Chair Norman Fost, who is also a defendant in the lawsuit, has taken multiple controversial positions on the rights of children with disabilities, including his defense of the use of electric shocks to modify the behavior of children and adults with disabilities and his support of the “Ashley Treatment,” which involves removing the reproductive organs and artificially stunting the growth of children with developmental disabilities.
ADAPT, American Association of People with Disabilities, American Council of the Blind, Association of Programs for Rural Independent Living, Autism Women’s Network, Bazelon Center for Mental Health Law, National Association of the Deaf, National Council on Independent Living, National Disability Rights Network, Quality Trust for Individuals With Disabilities, United Spinal Association, and the Wisconsin Board for People With Developmental Disabilities also joined the amicus brief.