In a first of its kind study, the National Disability Rights Network (NDRN) determined that performing certain medical procedures or withholding life sustaining treatment in non-terminal situations without judicial review violates the civil rights of people with disabilities.
The initial catalyst for the report is the so-called Ashley Treatment which received worldwide attention 5 years ago. Ashley was a six-year-old child with developmental and physical disabilities whose growth was stopped through estrogen treatments and whose uterus and breast buds were removed. The intent of this treatment was to keep her permanently small and child-like. NDRN believes this practice is spreading worldwide.
“The thought of doctors and guardians, together, deciding to remove the body parts and stunt the growth of a child based on assumptions about their awareness and quality of life is shocking and disgusting,” said NDRN’s executive director, Curt Decker
Further investigations by the nation’s federally mandated Protection and Advocacy agencies, which NDRN represents in Washington, DC, have uncovered other cases in which medical treatment and even basic food and water are being denied to individuals with disabilities during minor illnesses with the intent of letting the illness progress until death.
“In one case, the parents of a 13-year-old boy with a developmental disability refused to allow him access to antibiotics so that the cold he had would progress to pneumonia. They got their wish and the boy died,” said Decker.
“Every person is born with civil and human rights and an inherent dignity,” continued Decker. “The reality that this is happening in the United States is anathema to the core values that we as Americans say we hold. That it is happening to those unable to use their own voice is even worse. This report is meant to start the conversation about how society can and should make medical decisions that uphold the constitutional rights of all people with disabilities.”
The report, Devaluing People with Disabilities: Medical Procedures that Violate Civil Rights, puts individuals with disabilities at the center of discourse. It reviews the facts of Ashley X, as a case study and presents a continuum of similar experiences and treatment of individuals with disabilities within a context of medical decision making that devalues them as people and discriminates against them based on their disability.
The report explores the conflict of interest that medical decision making may present between a parent and their child. It describes the vital role that the legal and judicial systems have in ensuring that the civil and human rights of individuals with disabilities are protected regardless of their severity and in contrast to opinions regularly expressed in the medical and ethics community.
Finally, the report presents a series of recommendations for how the legal and medical systems at a local, state and national level, including protection and advocacy agencies, ethics committees, institutional review boards, and the courts can perform critical “watch-dog” functions to ensure that the human and civil rights of persons with disabilities are protected.
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The National Disability Rights Network (NDRN) is the nonprofit membership organization for the federally mandated Protection and Advocacy (P&A) Systems and the Client Assistance Programs (CAP) for individuals with disabilities. Collectively, the Network is the largest provider of legally based advocacy services to people with disabilities in the United States.