Preventing Organ Transplantation Discrimination Against People with Intellectual and Developmental Disabilities

Samantha Crane, J.D.

a project of

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

Doctors assess whether patient is medically fit to travel to the transplant center & undergo surgery

Automated database system locates an organ that “matches” the patient

Patient placed on national organ transplant database

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: 314–323.

What’s 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
Martens, Jones, & Reiss (2006) Ohta et al. (2006)
Galante, Dib, & MedinaPestana (2010) SamelsonJones, Mancini, & Shapiro (2012)

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 can’t 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

“Isn’t 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 family’s ability to help child follow treatment plan

This requirement is included explicitly in New Jersey’s 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 minor’s behalf.

Questions?

ASAN’s Toolkit: Promoting Access to Organ Transplants

• 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

• Follows structure of ADA
http://autisticadvocacy.org/organs

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!

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