From the May-June 2020 issue of News & Letters

by Suzanne Rose

April Dunn.

April Dunn was born with Fetal Alcohol Syndrome and Cerebral Palsy. She was an honor roll student in high school, but she was not able to pass the standardized test needed for graduation. She became a tireless advocate for schools to offer alternative ways for students with disabilities to get a diploma. She met with Louisiana legislators and testified in committees. The bill she advocated, Act 833, passed in both chambers of the Louisiana Legislature. Because of her efforts, people with disabilities can qualify for diplomas. Unfortunately, April died in March from COVID-19. She was 33 years old.

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Workers and the disabled adults they care for in group homes are not able to get the medical equipment they need to avoid COVID-19 and to care for those who have it. One CNA was told by an administrator not to “push so hard for these things” because the people in the home were “close to taking their last breath anyway.” In addition, some of these homes have been slow to inform family members that their loved ones have the virus or even that they have died from it!

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Adults with disabilities are worried that because of COVID-19 their lives will not be saved if they get the virus. Lucy Watts fears she would not be put on a ventilator because she has life-limiting conditions and requires 24-hour care. She is 26 years old. She said, “Life is devalued on the basis of my disabilities and needs rather than my life and the difference I have made in the world. I’m filled with anger, hurt and fear, and I want to fight back.”

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Pediatricians all over the country are considering denying organ transplants to kids with disabilities, even when they are likely to provide significant health benefits. The American Academy of Pediatrics is urging doctors to make “fair” decisions. They warn that to deny organ transplants to kids with disabilities is discriminatory and possibly illegal.