A few months ago, I learned of the heart-wrenching experience of Chrissy and Joe Rivera and their daughter Amelia who was denied the opportunity to receive a life-saving kidney transplant because she, as her doctor explained at the time, was “mentally retarded.” After the vociferous outcry from disability advocates across the nation (myself included), the hospital apologized to the Riveras and today, Amelia Rivera is under consideration again for a transplant.
Tragically, cases like these rarely occur in isolation. From my own experience at Special Olympics, I know people with intellectual disabilities are routinely denied access to life-saving healthcare because of their disability. The Rivera’s experience in Philadelphia demonstrates these instances occur in even the most sophisticated medical facilities.
That’s why I was so pleased to welcome the visit of Leon Rodriguez and Juliet Choi from the U.S. Department of Health and Human Services Office of Civil Rights to our office recently. They both pledged to look anew at the possibility that health care providers may be violating the Americans with Disabilities Act (ADA) in the ways in which they care for or fail to care for people with intellectual disabilities. Our mission in Special Olympics to share the gifts of our athletes and to invite others to join in creating communities of welcome and acceptance for all. They agreed with what our volunteers have been saying for over a decade: that oft-ignored cases of subtle discrimination are pervasive, that healthcare professionals are often biased in their care, and that the kind discrimination prohibited by law might well be active in practice. Needless to say, the attention of senior members of government to these issues is welcome.
As we celebrate the Riveras’ determination to get their daughter the healthcare she deserves, I urge our athletes and families and volunteers and friends to continue to raise their voices and prevent further discrimination from happening. And I’m grateful for leaders at the DHHS for joining all of us in pursuit of the full promise of the ADA and the law.