Statement on Allowing A Parent / Caregiver of A Person with An Intellectual / Developmental Disability Access to Hospitals

The Arc of North Carolina continues to receive emails and phone calls from parents and caregivers of people with intellectual/developmental disabilities (I/DD) who have been admitted to the hospital and are being denied access due to COVID restrictions.

In response, we drafted a letter stating parents and caregivers of a person with I/DD has the legal right under the Americans with Disabilities Act to have a parent or caregiver with them while they are in a medical setting. The letter was sent to parents and caregivers who were being denied access to give to hospital administrators. Many hospitals continued to deny access.

The Arc of North Carolina supports and agrees with the North Carolina Department of Health and Human Services and the North Carolina Healthcare Association in asking the general public not to come into a hospital. We understand their concern to keep patients and hospital staff healthy.

Recently, we were contacted and asked to help a family in crisis. “Joe” is 22 years old, diagnosed with autism, Down syndrome, and is non-speaking, tested positive for COVID-19 and was recuperating at home. The parent became concerned when Joe’s breathing became labored and took him to a hospital emergency room. Joe was given oxygen and was feeling better. The hospital admitted him to the ICU to keep him under observation. The parent was told that they would not be allowed to stay with Joe and that they needed to leave.

We know that this is difficult for family members who have a loved one in the hospital and cannot be with them. The difference in this situation is that people with I/DD may need caregiver support to communicate, understand, or make decisions about treatment; the absence of this support may put them at further risk of illness and complications. These are necessary and reasonable accommodations for someone with cognitive impairments. Having a parent or caregiver present allows them to better understand the plan for medical care and treatment. They can work with the person with I/DD to make decisions that are in their best interest and help to support hospital staff. A parent or caregiver is often the best historian for prior medical treatments, conditions, and medications which can help hospital staff know what diet, medical care, or treatment works best.

The Arc of North Carolina is requesting hospital staff and hospital administrators to allow one family member or caregiver to be with a person with I/DD during hospitalization. Our staff is happy to work with hospital staff to be a resource. We want to work with hospitals to ensure that this does not continue to happen.