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 21 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.
Many hospitals have enacted "No Visitor" policies that prevent patients in the hospital from having family members or caregivers visit them in the hospital. Visitor policies are developed by each individual hospital or hospital system. Thus, visitor policies vary from hospital to hospital. The "No Visitor" policies have been implemented to try to reduce the number of people exposed to COVID-19. These policies are challenging for patients and their loved ones, especially patients with intellectual and developmental disabilities who may have difficulty communicating their needs or understanding and coping with care plans and treatments.
The National Down Syndrome Society has developed a document that provides guidance for the situation in which an individual with Down syndrome has been hospitalized and the hospital will not allow anyone to visit them. It can be viewed at this link. We encourage you to review their document if you are facing that situation. The American Academy of Developmental Medicine & Dentistry has issued a statement encouraging hospitals to "provide reasonable accommodations in accord with the Americans with Disabilities Act in their visitor policies." The full statement can be found at this link. They have also started a petition to the U.S. Department of Health and Human Services. You can view and sign the petition at this link.
The Adult Down Syndrome Center is on the campus of Advocate Lutheran General Hospital. The current visitor policy of the hospital allows one support person who passes a health screening to be with patients with intellectual and/or developmental disabilities, and patients with cognitive disabilities, including dementia, for whom a support person is determined to be medically necessary.