Advocates Worry NC’s Vaccine Plan Bumps Those With Intellectual And Developmental Disabilities
Andy Strunck of Monroe won’t wear a mask. Not because the 30-year-old is trying to make a political statement but because he has autism and struggles with communication.
“He has sensory issues which prevent him from often going certain places, wearing certain articles of clothing, and definitely wearing a mask,” said Ruth Singer-Strunck, Andy’s mother.
Andy’s 21-year-old sister, Hannah, also has autism. She does wear a mask and is currently finishing high school virtually.
“She really didn’t understand it and she really still doesn’t understand it,” Singer-Strunck said. “She has minimal communication abilities so communicating through Zoom is not her strength even though she loves the computer. Trying to explain this to either one of the children is incredibly difficult.”
Singer-Strunck said a handful of caregivers rotate in and out of her house to help her and her husband take care of Andy and Hannah. She worries that the caregivers, who often work with more than one family, will contract COVID-19 and spread it to her kids. Andy and Hannah struggle to communicate verbally, which Singer-Strunck said makes it especially difficult to determine whether they have symptoms.
“I am so trepidatious of that exposure coming into this house and them getting really seriously critically ill," Singer-Strunck said. "It keeps me awake at night."
People with intellectual disabilities or developmental disabilities like autism have been disproportionately affected by the coronavirus pandemic. They are at higher risk of dying from COVID-19 and many have suffered because of increased social isolation. Yet they are among the last groups to get vaccinated under North Carolina’s new vaccine plan.
In the state’s initial 148-page vaccine plan, released in October, people with chronic conditions that make them more likely to become seriously ill with COVID-19 could be vaccinated under what was then called Phase 2. Under the simplified plan, issued in January, those people were bumped to Group 4. The state and federal governments have been vaccinating some people with intellectual and developmental disabilities but only if they live in long-term care facilities like group homes.
“North Carolina moves through vaccination phases by aligning to federal priorities,” Kelly Haight Connor, a spokesperson for the state’s Department of Health and Human Services, said in an email. “We are aligning with the Centers for Disease Control and Prevention Advisory Committee on Immunization Practices in terms of priority order.”
Melinda Plue with The Arc of North Carolina, an organization that advocates for and offers services to people with intellectual and developmental disabilities, called the state’s vaccine plan change “completely unfair.” She understands doses are limited but wants people with intellectual and developmental disabilities to at least be allowed to schedule future appointments.
“We know it’s not gonna happen overnight,” Plue said. “But right now, people aren’t even going to be allowed to make an appointment for months. We can’t wait.”
Those with intellectual and developmental disabilities are three times more likely to die from COVID-19, according to an analysis by FAIR Health of nearly 468,000 privately insured patients.
A study in the United Kingdom found that people with Down syndrome, one of the major known causes of intellectual disability, are five times more likely than the general population to be hospitalized from COVID-19 and 10 times more likely to die from the disease.
North Carolina is currently vaccinating people in groups 1 and 2: health care workers, people who live or work in long-term care facilities like nursing homes and people ages 65 and older. Next, it will move to group 3: frontline essential workers. Connor, the DHHS spokesperson, said frontline essential workers include “a high proportion of people with high-risk chronic conditions who have a high risk of exposure.”