[Editor’s Note:  Cathy Ludlum submitted this response to the IOM Committee’s online survey on Oct. 31, before the Nov. 1 deadline, so this is a belated sharing of her excellent input.  Let’s hope they pay attention as they prepare their final report that is due in 2014.] Question: If you are an individual living with … Continue reading Cathy Ludlum of Second Thoughts CT Responds to IOM Committee on Approaching Death →

This week, November 11, the Board of Directors of the Organ Procurement and Transplantation Network (OPTN) adopted a policy that removed two major threats to people with disabilities posed by previous proposals.  This is the key paragraph: 2.8  Requirements for Controlled Donation after Circulatory Death (DCD) Protocols Introduction:  Donation after Circulatory Death (DCD) describes the … Continue reading Disability Rights Victory in Organ Procurement Protocols – Persistence Pays Off →

[Editor’s Note:  In my full written comments on POLST submitted to the IOM Committee in July, I mentioned, “One advocate I know suggested that we need a disability educational campaign called ‘We Love Our Tubes’ or ‘Tube Pride.’”  That advocate was John Kelly.  Here, he tells more of his story to the Committee, responding to Question … Continue reading John Kelly’s Response to IOM Online Survey or “We Love Our Tubes!” →