Quality Trust supports many Latino American youth and adults with developmental disabilities in our advocacy work. Our bi-lingual advocate, Elver Ariza-Silva supported a 21-year-old man with Down syndrome who lived with his mother, sister and two young cousins. He had been involved in an exercise program and attended a day program, but the programs closed during the pandemic. He was obese and had other health conditions that put him at risk for poor health care outcomes from COVID-19. Near the beginning of the COVID-19 pandemic, the mother, who is the sole breadwinner continued to commute via bus to work as a custodian. However, when he became ill, his mother was reluctant to seek medical assistance. She called Ariza-Silva who advised her to call 911 or take her son to the hospital, but she refused. Ariza -Silva contacted this young man’s service coordinator who again shared the importance of getting medical attention as soon as possible. As a result of this advocacy, the mother did call 911 and her son was transported to the hospital with COVID-19 – but precious days in which he could have received medical treatment were already lost… His condition declined, and he was placed on a ventilator. The bi-lingual advocate maintained daily telephone contact, acting as a health care advocate and an interpreter between the medical staff and family. Initially, the mother was not allowed to support her son in the hospital, because it had imposed a general ban on visitors. Working with QT’s Legal Director, Ariza-Silva advocated for an exception, so that the mother could be with her son as an accommodation for his disability. After hours of negotiation, the Mother was finally able to see and comfort her son. Sadly, less than 10 hours after the visit, he passed away. Had his mother fully understood the health implications of COVID-19, she may have sought medical attention sooner and the outcome could possibly have been different. Our advocacy with families is critical to provide the support they need to fully understand information and make the best decisions for their loved one with a disability.

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