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Pennsylvania Mother fights for Disabled Son's Right to Medical Care
 

Pennsylvania Mother fights for Disabled Son's Right to Medical Care

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A Pennsylvania woman whose autistic adult son was not recommended for a heart transplant because of his psychiatric issues and autism wants to ensure that others with disabilities are not passed over ...

A Pennsylvania woman whose autistic adult son was not recommended for a heart transplant because of his psychiatric issues and autism wants to ensure that others with disabilities are not passed over without careful consideration.

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    Pennsylvania Mother fights for Disabled Son's Right to Medical Care Pennsylvania Mother fights for Disabled Son's Right to Medical Care Presentation Transcript

    • Pennsylvania Mother fights for Disabled Sons Right to Medical Care http://www.facebook.com/pages/Proud-to-be-from-Pennsylvania/272645216184951
    • Summary: A Pennsylvania woman whoseautistic adult son was not recommended fora heart transplant because of his psychiatric issues and autism wants to ensure thatothers with disabilities are not passed over without careful consideration. http://www.facebook.com/pages/Proud-to-be-from-Pennsylvania/272645216184951
    • (August 22, 2012) – The rights of the disabled to receive equal access to medical care have been spotlighted by a Pennsylvania case in which a 23 year old man was denied a heart transplant from the Hospital of theUniversity of Pennsylvania last summer over concerns about his “psychiatric issues” and “autism,” among other factors. http://www.facebook.com/pages/Proud-to-be-from-Pennsylvania/272645216184951
    • Paul Corby was born with left ventricular noncompaction, a condition in which a damaged left ventricle makes it impossible for his heart to pump the right amount of blood. He and his family learned about the condition in 2008, and last year Paul was told he would need a heart transplant in order to survive. http://www.facebook.com/pages/Proud-to-be-from-Pennsylvania/272645216184951
    • In Pauls case, however, the situation was complicated by the fact that he has been diagnosed with Pervasive Developmental Disorder. PDD is a group of five disorders characterized by delays in the development of multiple basic functions which affect interpersonal socialization and communication. The most common PDD is called Pervasive-developmental-disorder-not otherwise specified (PDD-NOS) and includes atypical autism. The other four Pervasive Developmental Disorders are Autism; Asperger syndrome; Rett syndrome; and Childhood disintegrative disorder. http://www.facebook.com/pages/Proud-to-be-from-Pennsylvania/272645216184951
    • Although Paul is able-bodied and high-functioning, the Hospital of the University of Pennsylvania declined to put his name on the hearttransplant list. A letter from the hospital said that the denial was made “given his psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effect of steroids on behavior." http://www.facebook.com/pages/Proud-to-be-from-Pennsylvania/272645216184951
    • Karen Corby, Pauls mother, was taken aback by the hospitals decision andhas started an online petition at http://www.change.org/petitions/help-my-autistic-son-get-a-life-saving-heart-transplant to ask that her son be able to receive the transplant that is necessary for his survival. So far the petition has gained more than 250,000 signatures in support and has started a debate about the ethics of using autism as a disqualifying condition for medical procedures. http://www.facebook.com/pages/Proud-to-be-from-Pennsylvania/272645216184951
    • While the University of Pennsylvania Health System is unable to discuss individual patients cases and so cannot specifically comment on Paulssituation, a recent statement issued by spokeswoman Susan Phillips notedthat “when individuals are referred for transplant consideration at Penn or any other certified transplant center, all aspects of their medical status would be reviewed.” http://www.facebook.com/pages/Proud-to-be-from-Pennsylvania/272645216184951
    • “This includes the current health status and post-transplant prognosis of therecipient, the impact of other existing health problems on the success of the surgery itself and over the longer term, as well as the potential interaction between a patient’s existing drug therapies and the drugs that would be necessary to stop transplant rejection.” http://www.facebook.com/pages/Proud-to-be-from-Pennsylvania/272645216184951
    • So far there has been no word from the hospital as to whether itwould reconsider its decision to deny Paul a heart transplant in spiteof the outpouring of public support for his mothers petition, which has also gained attention from advocacy and support groups for those with autism and other cognitive disabilities. http://www.facebook.com/pages/Proud-to-be-from-Pennsylvania/272645216184951
    • In addition to Karen Corbys petition site, a number of other websites are helping to spread awareness about the discrimination that people with developmental disabilities may face in regard to receiving medical treatment. Among these is http://www.facebook.com/pages/Proud-to- be-from-Pennsylvania/272645216184951 ,a Facebook fanpage that offers an online community where people can share their thoughts and comments about the latest Pennsylvania news and events. http://www.facebook.com/pages/Proud-to-be-from-Pennsylvania/272645216184951
    • "We feel it is very important to get the news out about Pauls situation and the role developmental disabilities should have in determining a persons medical treatment," notes page administrator S.S. Ober-Lehn. "And Facebooks international appeal makes the Proud to be fromPennsylvania fanpage a natural place for anyone who is concerned about this situation to come together to discuss this complex issue and help spread awareness about it." http://www.facebook.com/pages/Proud-to-be-from-Pennsylvania/272645216184951
    • To find out more about current news and events in Pennsylvania, please visit http://www.facebook.com/pages/Proud-to-be-from- Pennsylvania/272645216184951 http://www.facebook.com/pages/Proud-to-be-from-Pennsylvania/272645216184951