Ari Ne’eman has a long essay on the Huffington Post on health care reform and the concerns of the disability community. Ari is the founding President of the Autistic Self-Advocacy Network (ASAN). He is also – full disclosure alert – a friend and colleague of mine – although we have yet to meet face-to-face.
The following are excerpts from his essay, “Health Care Reform and the Disability Community“:
As we speak, Congress is deliberating on vast and important changes to the system of health care in the United States. This issue is one of crucial importance to all Americans, but of particular interest to those Americans who interact with public health insurance more than almost any other group — people with disabilities. Ranging from veterans with disabilities who receive care through the Veteran’s Administration health care system to the many low-income disabled adults who are eligible for Medicaid, the disability community interacts with the public health care infrastructure in the United States in a wide variety of ways. As we consider how to reform, streamline and expand that infrastructure through any of a variety of means, it is incumbent upon us to remember the key issues for making sure that health care reform doesn’t leave disabled adults and youth behind.
He goes on to list four key issues in health care reform that relate to the disability community. Here is part of item 4:
Stop discrimination in the provision of care: Too often, people with disabilities are denied necessary — sometimes even life-saving — medical care because of assumptions that non-disabled people make about our quality of life. For many people, disability is still considered a fate worse than death instead of a part of the human experience. As a result, it has been disabled people who are pushed over the side first when resources become scarce. As recently as last year, a task force including doctors from the Centers for Disease Control and Prevention, the Department of Homeland Security and the Department of Health and Human Services issued guidelines stating that, in the event of a flu pandemic or similar emergency, people with intellectual disabilities as well as those with chronic health conditions may be excluded from care.
The eugenic impulse that views people with disabilities as “burdens on society” or “life unworthy of life” is still regrettably alive and well within our health care system. Just last week, Disability Rights Wisconsin, the state’s protection and advocacy system for people with disabilities, filed suit against the University of Wisconsin hospital as a result of their decision to withhold medication and basic nourishment from two patients with intellectual disabilities who had pneumonia. These individuals were not in a persistent vegetative state, were not dying and one even asked for food. The decision to refuse anti-biotics, nutrition and fluids for a treatable medical condition was made by hospital officials based on their determination of “quality of life” for the individuals in question. Health care reform must include non-discrimination protections that prevent these types of atrocities by health care providers.
You can read the rest of his analysis here. –Stephen Drake