On January 26, 2015, the advocacy group Autistic Self Advocacy Network (“ASAN”), along with twelve other disability rights organizations, filed a second amicus brief defending the rights of individuals with disabilities and their access to basic medical care.
In 2009, the organization Disability Rights Wisconsin filed Disability Rights Wisconsin v. University of Wisconsin Hospital Centers et al. The facts in that lawsuit involved a thirteen-year-old boy and one seventy-two-year-old elderly woman, both diagnosed with developmental disabilities. Both individuals developed pneumonia, which is an easily treatable illness. However, both individuals were denied care to treat their illnesses. In addition, physicians employed by the University of Wisconsin Hospital advised the parents and families of these two individuals to discontinue treatment because their “quality of life [was] so poor.” It is important to note that neither of these individuals were diagnosed with a terminal illness. Neither one of these individuals were in a persistent vegetative state. The parents and families of these two individuals relied on the advice of the treating physicians and discontinued treatment. In doing so, the families discontinued the antibiotics the patients were receiving, as well as the basic necessities for life like hydration and nutrition.
In the case of the thirteen-year-old, the nursing staff, who were the child’s primary caregivers, in the facility objected on ethical grounds and refused to follow this plan of care. The treating physicians then allegedly recommended transferring the child to the University of Wisconsin Hospital. This recommendation was made for the express purpose of discontinuing treatment. The child’s family agreed to the physicians’ recommendation and the child was transferred shortly thereafter. Upon admission, the administration of antibiotics was discontinued, as well as necessary nutrition and hydration. The child was subsequently transferred to hospice care, again without a terminal diagnosis. Within twenty-four hours of being in hospice care, the child “dehydrated, ill, and dosed with morphine – stopped breathing and died.”
In the seventy-two-year-old elderly woman’s case, the physicians made a similar recommendation when she fell ill with pneumonia. The plan of care was to discontinue routine antibiotic treatment. Fortunately, the woman began to recover on her own and the woman’s family elected to continue treatment. Despite her recovery, the physician’s recommendation was still to transfer her into hospice care even though she did not have a terminal illness.
The implication in both cases is that the physicians made life or death determinations about the patients’ “quality of life” without attempting to communicate with the patients or with the patient’s caregivers. Moreover, they failed to consult with the hospital’s ethics committee and did not obtain approval from a court prior to making a decision. “If these people hadn’t had developmental disabilities, there is no question that they would have been given this basic medical care,” stated Samantha Crane, Esquire, Director of Public Policy for ASAN, author of the second brief filed in this case. “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.”
Disability Rights Wisconsin contends that University of Wisconsin Hospital and Clinics (“UWHC”) policies are representative of prevalent, nationwide medical discrimination and disability bias. The brief advocates for legal protections to protect vulnerable individuals from potentially fatal denials of basic medical 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,” stated Ms. Diane Coleman, President and Chief Executive Officer (“CEO”) of the organization, Not Dead Yet. “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 a disability.”
The Wisconsin Court of Appeals denied Disability Rights Wisconsin’s claim that the UWHC physicians infringed on their patients’ rights under the United States Constitution and/or the Wisconsin Constitution, which resulted in an appeal to the Wisconsin Supreme Court. In May 2014, ASAN filed an amicus brief with the Appeals Court.
Under Wisconsin law, parents of nondisabled children must provide lifesaving medical care to their children. In 2013, there was a Wisconsin Supreme Court case where the court upheld homicide convictions for parents who did not obtain medical treatment for their child. As a result of the parents’ refusal to obtain medical care for their child, the child died due to untreated diabetes.
Another defendant in the lawsuit is Mr. Norman Fost, UWHC Ethics Committee Chair. Mr. Fost had a history of taking controversial positions regarding the rights of disabled children. Some of those positions include his support of the use of electroconvulsive therapy for the purpose of modifying the behavior of disabled children and adults. Mr. Fost also supports the controversial “Ashley Treatment.” The “Ashley Treatment” is a procedure where the reproductive organs are removed in order to artificially inhibit the growth of children with developmental disabilities.
Discrimination in the provision of basic medical care to individuals diagnosed with Autism Spectrum Disorder (“ASD”) must be stopped. This discrimination must end not only for ethical and social justice reasons but also due to the strain placed on health care costs if left unaddressed. Possible solutions to this issue include insurance reform and behavioral intervention early in the child’s life with the goal of reducing medical costs later in the child’s life. Another solution is encouraging parents of children with ASD to establish a tax-free savings account to cover any medical expenses not covered by insurance. To get a better understanding of the issue at hand, a base knowledge of what Autism Spectrum Disorder entails is necessary. Part I of this paper explains what ASD entails, as well as the current statistics of its prevalence. Part II outlines a brief history of autism to show possible reasons for the prejudice and discrimination of this population. Part III delves into proposed solutions to the above-mentioned issues including mandating insurance coverage for people with autism with California as a model. Part IV outlines the current insurance coverage options for individuals with autism. Part IV also details the progress made under the Affordable Care Act, as well as a Florida application of the Achieving a Better Life Experience (“ABLE”) Act.