a project of
Preventing Organ
Transplantation Discrimination
Against People with Intellectual
and Developmental Disabilities
Samantha Crane, J.D.
Policy Brief and Toolkit: Organ
Transplantation and People with
Disabilities
Funded by Special Hope Foundation
http://autisticadvocacy.org/organs
History of Medical Discrimination against People with Disabilities
Sandra Jensen (1995) Amelia Rivera (2012)
Organ Transplantation Referral and Approval Process
Patient receives diagnosis
Primary care doctor or specialist refers patient to
transplant center for evaluation
Patient travels to transplant center
transplant center must approve or reject
Patient placed on national organ transplant
database
Automated database system locates an organ that matches the patient
Doctors assess whether patient is medically fit to travel to the transplant
center & undergo surgery
Transplant center performs transplant
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.
Whats changed since 1992?
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.
Lack of Transparency in Organ Transplant Process
Only 52% of people with I/DD who request referral to a specialist for evaluation receive a referral
1 out or 3 people who receive a referral are never evaluated
As a result, there is often no paper trail showing denial of organ transplant.
Source: 2004 National Work Group on Disability and Transplantation survey
Do Outcomes Justify Concern? Surveys of known transplant recipients show that people with intellectual and developmental disabilities can receive successful transplants:
Study Population Transplant
Type
Findings
Martens,
Jones, &
Reiss (2006)
Patients with
Intellectual
Disability
Kidney Three-year survival rate for people with ID was 90% - the
same as the nationwide overall survival rate for kidney
transplant recipients.
Ohta et al.
(2006)
Children with
Intellectual
Disability
Kidney (grafts) For all of the 25 children studied, kidney grafts were still
functioning 41 months after surgery.
Galante, Dib,
& Medina-
Pestana
(2010)
Patients with
Intellectual
Disability
Kidney (grafts) 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%.
Samelson-
Jones,
Mancini, &
Shapiro
(2012)
Patients with
Intellectual
Disability or
Brain Injury
Heart 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%).
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
Isnt that illegal?
Probably, yes! Under disability discrimination laws such as the Americans with Disabilities Act (ADA) and Rehabilitation Act, doctors must:
Not refuse to provide services to qualified people with disabilities;
Make reasonable modifications to their policies and procedures to enable people with disabilities to access services.
+ California and New Jersey explicitly ban disability-based discrimination in organ transplants
Consideration of Services and Supports as a Reasonable Modification
Clinicians should not refuse transplantation for reasons unrelated to the medical need or likely success of the transplant.
Clinicians should consider whether services and supports could help a transplant candidate comply with post-operative care
Compare to transplants for the general pediatric population: doctors consider familys ability to help child follow treatment plan
This requirement is included explicitly in New Jerseys anti-discrimination law!
Examples of Supports
Family, friends
Community support organizations
Medicaid-funded home and community-based services
School-provided nurse and health education services
Centers for Independent Living: peer support, referrals to service providers
Gaining Consent: Supported Decisionmaking
Doctors need informed consent before providing treatment.
Complex or high-stakes operations require higher standard.
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?
ASANs Toolkit: Promoting Access to Organ Transplants
Model Legislation
Know Your Rights Guide
Guide for Clinicians + List of Potential Supports
Guide for Advocates
http://autisticadvocacy.org/organs
Model Legislation
Prohibits consideration of disability without medical justification
Requires consideration of available supports
Authorizes consent through supported decisionmaking
Provides expedited complaint process
Follows structure of ADA
Guide for Advocates
Provides:
Advice on approaching state legislators to promote antidiscrimination legislation in their state
Information for use in approaching stakeholders, writing op-eds
References to other potential resources (including Know Your Rights guide and Guide for Clinicians)
Guide for Clinicians
Provides:
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
Know Your Rights Guide
Provides:
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?
Website:
www.autismnow.org
Information & Referral Call Center:
1-855-828-8476
PowerPoint/Recording:
Email Phuong ([email protected] ) to request additional materials!
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