Recently we were contacted by the County Office of Mental Health and Developmental Disabilities and asked to advocate on behalf of a young gentleman with Prader Willi Syndrome. Prader Willi is a syndrome where you cannot control the consumption of food. If no intervention is provided, individuals with Prader Willi die because of weight related health issues. The county explained to us that the mother was unwilling and unable to control her son’s food intake, and as a result regular emergency placements in health care facilities were arranged to control his eating and weight gain. We were asked if we were interested in becoming guardian for this individual. We are very reluctant to assume guardianship for a person with developmental disabilities unless there is no other option. Guardianship removes many rights from the person that needs to be adjudicated incompetent. As a result of our advocacy work, the individual has been placed in a residential program that is successfully monitoring this gentlemen’s food intake. If the mother continues to intervene in a way that places her son’s life in jeopardy, we will need to reconsider assuming guardianship. These situations are extremely difficult because of our strong belief in individual rights and our strong belief that in almost all cases parents are better able to make choices for their children than the system, the governmental agencies, service providers or advocates.
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