When the pandemic hit, hospitals restricted access to visitors, companions, and caregivers accompanying patients, as a way of mitigating the spread of the virus and protecting the vulnerable within its walls. For most patients without communication disabilities, this wasn’t an issue of life or death, but for Timothy Dempsey it meant there was no one to advocate for his medical needs, recognize his seizures, or read his face and body language when something was wrong.
Timothy is a 45-year-old man with Lennox-Gastaut Syndrome, epilepsy, intellectual disability, and Cerebral Palsy. His sister Robin is his guardian, and she and her family care for him in their home, attend to his every need, and most significantly, they understand his non-traditional form of communication.
Timothy is no stranger to hospital Emergency Rooms, as he aspirates often, but in March 2020, his experience was very different. Upon entering the hospital, Robin expressed her concerns and all the reasons necessary for her to stay with her brother, and initially, nurses allowed her to remain by his side. Later though, even though he is unable to speak or care for himself, the hospital’s Chief Officer denied the accommodations for Timothy and asked Robin to leave the premises.
Robin grew increasingly concerned, as her past experiences in the hospital with Timothy told her the doctors often missed his medical episodes and failed to keep up with his medications. Her calls to check on him were limited so she could not ensure the doctors addressed his needs properly. There was no doubt in her mind that his civil rights were being violated, as well as his health jeopardized because the hospital failed to recognize her as his legal guardian, just as they would have if he were a minor.
Robin reached out to Disability Rights New Jersey and asked us to intervene on Timothy’s behalf, advocating for his right to keep his guardian by his side, just as she had done on so many other occasions at the hospital.
As COVID-19 began to spread feverishly across our region and hospitals began taking protective measures into their own hands, Disability Rights NJ took swift action to ensure that the civil rights of people with disabilities were protected. We brought our concerns to the Department of Health, in particular that hospital policies which restricted all visitations violate the rights of individuals with disabilities who need communication or behavioral supports as a reasonable accommodation under the Americans with Disabilities Act, Section 504 of the Rehabilitation Act, and provisions of the Affordable Care Act. After researching similar policies from other states, we provided the Department with specific language to assist in its adoptions of a uniform hospital visitation policy that ensured the civil rights of people with disabilities. Along with other stakeholders, our advocacy led the Department to issue a final hospital visitation policy that met our concerns and protected people with disabilities.
Under the Department of Health’s new hospital guidelines pertaining to support persons for patients with a disability , Timothy was no longer alone, as Robin was able to stay with him in his room during emergency hospitalizations. Timothy is back with his family, enjoying strolls together in the sunshine.
This advocacy work proved to make a great difference, not just for Timothy, but countless others during the pandemic.