ASAN Issues Report on Organ Transplants and People with Disabilities

This past week, the Autistic Self Advocacy Network issued a report on organ transplants and people with intellectual or developmental disabilities.  You can find the report here.  The recommendations include:

FIRST, states should follow California’s example and pass legislation explicitly clarifying legal protections against discrimination for people with disabilities seeking organ transplants. Sugh legislation should explicitly include the following points:
a) a prohibition against discriminating against people with disabilities that are not medically relevant to the transplantation process; b) clarification that support services should be considered when assessing the ability of a transplantation candidate to comply with postoperative procedures, and c) the scope of services and health care interactions relevant to the law, including referrals, evaluation and recommendation for access to the transplantation list.

SECOND, HHS should seriously consider issuing guidance to the field explicitly clarifying the applicability of the ADA and Section 504 to organ transplantation settings, indicating examples of acceptable and unacceptable criteria for evaluation and clarifying that non-medically relevant conditions, including I/DD, should not be held against an individual in seeking access to organ transplantation. * * *.

THIRD, both policymakers and national leaders in the I/DD community should consider measures to elevate the priority of services designed to assist people with I/DD in postoperative care management. * * *.

FOURTH, the I/DD community must learn to effectively defend its interests in the bioethics realm. * * *. Possible measures include the establishment of a journal focusing on these issues from a disability rights perspective, additional support to the publication efforts of researchers and academics friendly to the disability rights perspective, the organizing of a conference on disability rights priorities in bioethics to allow for coordination and discussion between activists and academics and a wide variety of other social change strategies. * * *.

FIFTH, additional resources must be given to providing people with I/DD and their families with advocacy services to fight discrimination when it becomes apparent. * * *. Congress should allocate additional fiscal resources to Protection and Advocacy agencies to monitor hospitals, medical establishments and other medical entities, train provider groups, and investigate potential violations of the civil and human rights of individuals with disabilities in regards to due process protections within health care settings.