Professional Documents
Culture Documents
a project of
Policy Brief and Toolkit: Organ Transplantation and People with Disabilities
Funded by Special Hope Foundation
http://autisticadvocacy.org/organs
Primary care doctor or specialist refers patient to transplant center for evaluation
Doctors assess whether patient is medically fit to travel to the transplant center & undergo surgery
Post-operative care: patient must follow intensive, lifelong medication regimen to ensure transplant success
Survey of Transplant Centers: would you perform a heart transplant for someone with ID?
Source: Levenson JL, Olbrisch ME. Psychosocial evaluation of organ transplant candidates: A comparative survey of process, criteria, and outcomes in heart, liver, and kidney transplantation. Psychosomatics 1992: 34: 314323.
As of 2008, 85% of transplant centers still said they considered neurodevelopmental disability as a factor in deciding whether to approve a transplant.
Heart transplant centers are more likely to consider disability as a factor than kidney transplant centers. No transplant center reported formal or uniform standards for considering disability status decisions may be subjective.
Population
Patients with Intellectual Disability Children with Intellectual Disability Patients with Intellectual Disability
Patients with Intellectual Disability or Brain Injury
Transplant Type
Kidney
Findings
Three-year survival rate for people with ID was 90% - the same as the nationwide overall survival rate for kidney transplant recipients. For all of the 25 children studied, kidney grafts were still functioning 41 months after surgery.
5-year graft survival rate for 16 patients with ID was identical to rate for matched patients without ID, and adherence to medical recommendations was 100%. Four of five patients surveyed were still alive up to 16 years after transplant. One in five (20%) had a poor outcome as a result of non-adherence to treatment, which is comparable to the average rate of non-adherence to post-transplant medications among nondisabled people (23%).
Kidney (grafts)
Kidney (grafts)
Heart
Causes of Discrimination
Belief that people with disabilities cant manage post-operative care; lack of awareness of available supports Belief that people with disabilities are less worthy recipients of the limited supply of transplantable organs Belief that people with disabilities cannot consent to transplant
Examples of Supports
Family, friends
Supported decisionmaking allowing a person to use assistance in understanding options and making choices helps people with disabilities access lifesaving care even if they do not have a guardian.
In many cases, the candidate is a minor in that situation, parents can consent on the minors behalf.
Questions?
Model Legislation Know Your Rights Guide Guide for Clinicians + List of Potential Supports Guide for Advocates
Model Legislation
Prohibits consideration of disability without medical justification Requires consideration of available supports Authorizes consent through supported decisionmaking Provides expedited complaint process
References to other potential resources (including Know Your Rights guide and Guide for Clinicians)
Background on ID/DD and case studies of people with ID/DD who have undergone transplants
Accessible explanations of applicable laws Examples of supports that may be used for post-operative treatment adherence and supported decisionmaking
Information on ways that people with ID/DD can, with support, successfully undergo organ transplants
Accessible explanations of applicable laws Information on how to self-advocate within medical contexts Information on how to file administrative complaints and/or find an attorney
Questions?
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