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 (pnguyen@autismnow.org ) to request additional materials!