Utahns With Disabilities Worried About Access To COVID Vaccines

SALT LAKE CITY, Utah – Utah is working to vaccinate people who are at high risk of contracting COVID-19, starting with first responders, teachers and the elderly.

But many worry there’s a group facing severe consequences that is not yet a priority. People with disabilities, as well as their families, are wondering when they may be able to have a little vaccine security.

“A lot of these professional organizations, they’re able to vaccinate their employees. But those of us who have to get by, so to speak, it is a kind of scary situation not knowing who people have been around,” said Lopeti Penima’ani Penman, who is a disability rights advocate and has a disability himself.

He lives alone but has a network of family and friends who help him with various things a few times a week, a network that has had to shrink because of COVID-19.

“I don’t have as many people to call upon when needed,” he said. “This help is invaluable. It’s absolutely invaluable for me.”

He said at one point, his sister and her family had to quarantine because they were sick, even further limiting the people he could call on for help.

While some people with disabilities need care from licensed home health care providers, many people rely on unlicensed care providers, even friends and family for help with things like dressing, showering, preparing meals and transportation.

Work that is necessary but not medical in nature. Because most insurances will not cover non-medical care, people often rely on non-licensed caregivers paid through Medicaid and unpaid family members.

Right now, Utah does not have plans to vaccinate non-licensed caregivers to disabled and elderly people, unless they themselves fall into another group that has been prioritized for vaccines.

Tina Persels takes care of her adult son Adam, who has multiple disabilities. Ron Faerber helps to take care of his daughter with multiple disabilities, his wife with multiple sclerosis and his elderly mother. Both said pre-pandemic, they had lots of support staff coming in from nurses to therapists.

But much of that has stopped.

“The day we began isolation, we stopped everyone from coming in our front door,” said Persels. “We have no choice, you know, we have to keep him as safe as possible.”

Because Faerber cares for so many of his family members, he said he was told he may be able to get a vaccine sooner. But that doesn’t ease his mind completely.

“Well, what about my wife, daughter and my mother and they said, ‘They’ll have to wait,’” he said. “And I’m thinking, ‘OK, if I can get a vaccine that protects me, but I can still catch the virus not get fatally sick from it, but I can still pass it on to my family members who I dearly love.’”

Some people with disabilities under age 70 may be vaccinated in the next phase of vaccines, but officials with the Utah Department of Health bave yet to announce who exactly qualifies.

Officials with the Centers for Disease Control have a list of 11 medical conditions that they qualify as underlying conditions, but disability advocates and even the CDC acknowledged that it’s not everyone at risk of severe illness.

The Disability Law Center sent the state of Utah a letter in December asking that intellectually disabled people and people with developmental disabilities be prioritized for the vaccine. Nate Crippes said they have not heard back from the state, but they are hopeful these folks will be included in vaccine rollout soon.

He said he wants to make sure the disability community is not forgotten as life returns to some semblance of normalcy.

“I don’t see how we can just say they have to stay at home while the rest of us don’t,” Crippes said.