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For people with Down syndrome, family members, caregivers and professionals.
June 2020 | Adult Down Syndrome Center - Resource List
UPDATED JUNE 2020: On June 9, the Office for Civil Rights (OCR) at the U.S. Department of Health and Human Services (HHS) announced that it had reached a resolution on the first federal complaints regarding "no visitor" policies at hospitals, outpatient clinics, and outpatient surgical facilities. According to the Center for Public Representation (CPR), the resolution makes it clear that "federal law requires hospitals and the state agencies overseeing them to modify policies to ensure patients with disabilities can safely access the in-person supports needed to benefit from medical care during the COVID-19 pandemic."
More information and resources can be found in the Hospital Visitor Policies section on this page of the CPR's website. A COVID-19 resource developed by a consortium of Down syndrome organizations summarizes the policies on page 18 of this resource and shares recommendations for who to contact if you or a loved one experiences discriminatory care. A video and booklet were created by the Green Mountain Self-Advocates and the Autistic Self-Advocacy Network to help self-advocates understand the resolution.
The Illinois Department of Public Health has also issued a statement that health care facilities (including hospitals) should allow patients with intellectual and/or developmental disabilities to be accompanied by a support person determined to be essential to their care.
To see all our resources on COVID-19, please visit this link.
We offer a variety of resources for people with Down syndrome, their families and caregivers and the professionals who care for and work with them. Search our collection of articles, webinars, videos, and other educational materials.
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Please note: The information on this site is for educational purposes only and is not intended to serve as a substitute for a medical, psychiatric, mental health, or behavioral evaluation, diagnosis, or treatment plan by a qualified professional. We recommend you review the educational material with your health providers regarding the specifics of your health care needs.