A head shot of a young woman with Down syndrome, smiling.

Equal Lives, Equal Rights: Challenging Organ Transplant Discrimination Against People With Disabilities

/in , , /by The Arc

Over 100,000 individuals in the United States are waiting for an organ transplant, including many people with intellectual and developmental disabilities (IDD). Thousands of people die each year waiting for a transplant. Unfortunately, many people with IDD get rejected at such high rates that it has become an ethical medical issue.1 For example, a study showed that individuals with IDD were 62% less likely to receive a kidney transplant.2

The National Council on Disability released a report about organ transplant discrimination. The report shared beliefs that some medical professionals had about people with disabilities. Some doctors believe that those with IDD would not be able to comply with postoperative care. Other doctors believe that disability impacts the likelihood of having a successful transplant.3 However, research has shown that these are myths. Many studies show that transplant outcomes for people with disabilities are not worse than those who do not have disabilities.4

Thankfully, some professionals understand that having a disability does not mean a person should be less eligible for an organ transplant. Thanks to organ donations, people like Charlotte Woodward can survive and live fulfilling lives!

A head shot of a young woman with Down syndrome, smiling.Charlotte is an advocate with Down syndrome who was born with a congenital heart defect. She had to undergo multiple surgeries as a child and finally received a heart transplant in 2012. The journey to get her heart transplant had its challenges, but she used her experience to fight to make sure everyone had access to organ transplants. To make this a reality, Charlotte spoke with policymakers about creating a bill about organ transplant discrimination. Members of Congress created the Charlotte Woodward Organ Transplant Discrimination Prevention Act. This bill would prohibit health care entities from denying a person access to a transplant due to their disability.

For decades, The Arc has supported legislation, regulations, and policies that address organ transplant discrimination. Charlotte’s bill’s introduction in Congress was successful. The Arc will continue to advocate that organ transplant discrimination is wrong and needs to end.

Charlotte is also a member of The Arc’s National Council of Self-Advocates. Charlotte offers this advice for other self-advocates who are tirelessly working to advance legislation: “Never give up. If you don’t speak up for yourself and don’t demand what you want and need, you’re not going to get it.”

If you are a self-advocate looking for effective advocacy tips, join our National Council of Self-Advocates.

 

 

 

1 https://www.washingtonpost.com/national/health-science/people-with-autism-intellectual-disabilities-fight-bias-in-transplants/2017/03/04/756ff5b8-feb2-11e6-8f41-ea6ed597e4ca_story.html

2 https://jamanetwork.com/journals/jamasurgery/fullarticle/2801511

3 https://www.ncd.gov/assets/uploads/reports/2019/ncd_organ_transplant_508.pdf

4 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9932938/

A woman in a wheelchair is holding a tablet and showing it to a man seated next to her who is holding a clipboard. They are in a work setting.

How and Why to Celebrate National Disability Employment Awareness Month

/in /by The Arc

A woman in a wheelchair is holding a tablet and showing it to a man seated next to her who is holding a clipboard. They are in a work setting.Each October, during National Disability Employment Awareness Month (NDEAM), we celebrate the contributions, achievements, and potential of people with disabilities in the workplace.

Employees with disabilities are dependable, loyal, and eager to learn—and research shows that their inclusion in the workforce improves overall employee retention rate and morale. However, people with disabilities have been marginalized and misunderstood for generations, and up to 85% of people with intellectual and developmental disabilities (IDD) remain unemployed.

How to Celebrate NDEAM in October (And Year-Round)

Here are a few ways you can observe and celebrate National Disability Employment Awareness Month.

Learn about the value of people with disabilities in the workforce.

Share your disability employment story and help someone share theirs.

The Arc has many disability employment success stories from both employees and employers. Read them and share them with your networks.

If you have a friend, family member, coworker, or neighbor with a disability who is employed, encourage them to share their story. Let’s help more people understand the value that people with disabilities bring to the workforce. Share your stories on social media using #NDEAM or even reach out to your local news. Be sure to join The Arc’s celebration by following us on Facebook, Instagram, X (formerly Twitter), and LinkedIn and engaging with stories from the people we serve.

Look at your company’s disability hiring practices.

  • If you’re not actively hiring people with disabilities, here’s a tip sheet to help you get started.
  • Review your company’s policies and processes to make sure they are inclusive and comply with the Americans with Disabilities Act.
  • Train managers and supervisors to make sure they understand implicit bias and their role in fostering an inclusive workplace.
  • Post about NDEAM in your newsletter, on your website, or on social media to help increase awareness.
  • Participate in Disability Mentoring Day, which takes place on the third Wednesday in October.

Donate to organizations that actively promote workforce inclusion for people with disabilities.

The Arc has been fighting for the inclusion of people with IDD, such as autism, Down syndrome, and cerebral palsy, in all stages of life. This starts with education advocacy and resources, which is the foundation for meaningful opportunities, and continues into employment access. Support our work!

Is There a Theme for NDEAM in 2024?

Each year, the U.S. Department of Labor’s Office of Disability Employment Policy selects a theme for National Disability Employment Awareness Month. The 2024 NDEAM theme is “Access to Good Jobs for All” to affirm that disabled workers must have access to good jobs, every month of every year.