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March 19, 2007 Governor Rick Perry Dear Governor Perry, The American Association of People with Disabilities (AAPD), the largest national nonprofit cross-disability member organization in the United States, writes to urge you to act immediately to protect young Emilio Gonzales by ensuring that his treatment continues at the Children’s Hospital of Austin until he can be safely transferred to another facility that is prepared to take responsibility for his care and treatment. Continuation of his care represents respect and protection of this vulnerable child’s physical integrity on an equal basis with others. AAPD urges you to intervene on behalf of Emilio Gonzales and stop the 10-day countdown the hospital has begun, after which time the hospital will discontinue critical treatments necessary to preserve his life. In 2005, AAPD and 42 other disability organizations prepared and endorsed a “Statement of common principles on life-sustaining care and treatment of people with disabilities.” In that statement, we note that children with significant disabilities “have been especially vulnerable to violations of their fundamental rights, including the denial of access to life-sustaining care and treatment, such as routine medical treatment and food and fluids.” We also note that “[w]hen doubt exists as to whether to provide life-sustaining care and treatment a presumption must always be made in favor of providing such care and treatment.” Paternalism and prejudice have played significant roles in the healthcare experiences of people with disabilities for decades and the freedom to make medical choices is a liberty that people with disabilities have historically been denied. AAPD believes that Catarina Gonzales is in the best position to make decisions regarding the care her son should receive and that no doctor or hospital ethics board should be permitted to override those decisions, especially when the hospital seeks to end Emilio’s life against his mother’s wishes. AAPD strongly believes that if any bias is to exist in such medical contexts, it should exist in favor of the preservation of life rather than the abbreviation of it. The humanity in healthcare, not the costs of it, should drive these decisions. Economics-based logic in the provision of healthcare often plays out in a way that harms the most vulnerable patients. AAPD is concerned about the precedent that this case would represent and its contribution to a national growth of “futile care” laws and policies. AAPD calls on you to show strong leadership in this matter by intervening on behalf of Emilio Gonzales before the hospital’s 10-day time limit is reached on March 23rd. Respectfully, Andrew J. Imparato
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