Families of people with disabilities eagerly await COVID-19 vaccine

The pandemic is taking a toll on people with disabilities in Wisconsin. In a matter of weeks, many should become eligible for vaccination.

Twenty-one-year-old Matthew in Brookfield is considered ‘high-risk’ for the coronavirus. His mom, Sarah Knowles, wants him vaccinated as soon as possible.

"It's a chance that we might get back to some degree of normality," said Knowles.

Sarah Knowles

Matthew has cerebral palsy and an intellectual disability. For those reasons, Knowles says her son can’t communicate when he’s feeling ill.

"There can be a delay in treatment," said Knowles. "Even a simple cold, we don’t know until it’s a full-blown cold."

Matthew will be the last person in his household to become eligible for vaccination. Both of his parents received their first doses in Phase 1a because they are Matthew’s caregivers through the IRIS program.

"Matthew is the highest risk and he's the only one who hasn't been able to get a vaccine," said Knowles. "We are concerned that we’re waiting until at least March 1st."

Matthew is in line for vaccination after people age 65 and older in Phase 1b, along with others "enrolled in Medicaid long-term care programs" like Family Care, and 16 to 21-year-olds in the Children’s Long-Term Support Waiver Program and Katie Beckett Program.

"I think the state is doing the best it can to get the vaccine out to people as fast as it can," said Mitch Hagopian, of Disability Rights Wisconsin. "I just urge people to be patient."

Hagopian is part of a state subcommittee on vaccine allocation. Weeks ago, that subcommittee clarified that Phase 1a does include home caregivers like Matthew’s parents, along with other frontline healthcare workers, after many called to voice concerns.

"They were trying to register for the vaccine and they were being told they weren't eligible for it," said Hagopian.

Mitch Hagopian

The pandemic has been difficult for people with disabilities and their families. Many rely on services that are being compromised.

"We're hearing stories from people who are becoming so depressed they're contemplating suicide," said Hagopian.

Committee members who decide which groups receive a vaccine have to weigh community mortality rates with how to keep the economy running.

"We have to balance that, recognizing there's no way to do it perfectly. We did the best we could," said Hagopian.

Hagopian says caregivers got vaccines early on because their patients rely on them and many see multiple patients in a single day.

Matthew’s mom understands the challenges but wishes his doctor could decide when her son gets vaccinated.

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"It's difficult to know what order people should be in," said Knowles.

There are about 700,000 Wisconsinites age 65 and older now eligible for the vaccine. Those anticipated to qualify next also include grocery store employees, educators, child care providers, 911 operators, bus drivers, food production workers and those in group living facilities.

Helpful link: COVID-19: Vaccine Phases and Eligibility | Wisconsin Department of Health Services

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