Vaccine eligible, but vaccine is inaccessible
People with disabilities already face several hurdles; some providers unaware of guidelines
Mary Ann Tellock’s doctor didn’t believe her when she told him that her son was eligible for the COVID-19 vaccine.
Jason Tellock is 28 and has been diagnosed with roughly 30 conditions, including autism, an autoimmune disorder, diabetes and mild brain damage. He and Tellock, 70, live in Hortonville. Since he left his job at Lakeside Packaging due to COVID-19 concerns, she has become his “playmate, best friend, mother and security blanket.”
He’d become eligible on March 1 when the state health department opened up the shots to people enrolled in Medicaid long
term care programs, which include government programs for adults with disabilities like Family Care and IRIS.
But many vaccine providers didn’t get that message. When the Wisconsin Department of Health Services announced who’d be newly eligible, they pushed for teachers to be first in line to help schools reopen in person. And people over 65 who hadn’t gotten the shot yet were also to be prioritized.
It left Jason’s family and others in his situation unsure where they stood — another hurdle for a population that already faces others to get the vaccine. A DHS spokeswoman did not respond to a request for comment on the matter.
Health officials later corrected the message, but advocates say too many barriers still stand in the way for Wisconsinites with disabilities, such as transportation, overreliance on phone apps and computers for making appointments and not allowing family members to accompany loved ones during vaccinations.
They are pushing the state to do more to make the process easier as vaccinations are opened up to more people. The hurdles were obvious to Tellock as she had to Google DHS’ criteria and show it to her doctor for proof.
When she’d check online for appointments at local pharmacies, which she scoured daily, there was no box to check to show Jason was eligible because of the IRIS program. Because he was younger than 65 and not a health care worker, it looked as though he wasn’t eligible at all.
Last Thursday, Jason got his first dose at a Pick ‘n Save in Green Bay with the help of Tellock’s daughter, who was able to book him an appointment from her home in Nashville. The family is hopeful that he’ll be able to attend a summer camp for people with autism in Clintonville at the end of June.
DHS priority instructions are confusing some providers, advocates say
Mitch Hagopian, an attorney for Disability Rights Wisconsin, was a member of the state committee deciding which groups would be next to get the vaccine.
In their discussions, he pushed to have people in Medicaid long-term care programs be among the first non-elderly Wisconsinites to be next in line.
Not all people with disabilities are more at risk of serious illness and death from COVID-19, but they are more likely to have conditions like heart disease, diabetes, cancer or a weakened immune system, according to the Centers for Disease Control and Prevention.
Hagopian got what he asked for, but with a confusing message: Teachers, as well as older people who hadn’t yet been vaccinated, were “first in line” among people in that next group.
“What it means for others is they will not be first in line,” DHS deputy secretary Julie Willems Van Dijk told reporters in a media briefing Feb. 23. “Teachers and educators and child care workers will be front in line, and as people who are (65 and older) start to complete their vaccine series, that will create more space in communities across the state for those other essential workers ... to also queue up in line.”
On March 1, when people in Medicaid long-term care programs were set to become eligible, the department’s website said people in those programs could anticipate getting vaccinated in April and May.
In a letter to DHS Secretary Karen Timberlake, Disability Rights Wisconsin executive director Lea Kitz wrote that the agency’s “surprise decision” to create a priority list for those in group 1B had clouded its message to families that people in Family Care and IRIS programs could start signing up for vaccines right away.
DHS officials have clarified that although they’re aiming to get teachers inoculated quickly, anyone who’s currently eligible can make an appointment right away.
Until last week, the city of Milwaukee was only offering appointments to educators and child care workers, which Hagopian said he thinks they felt they had to do based on DHS’ announced priorities. Milwaukee health officials did not immediately respond to a request for comment.
“We are not asking for special prioritization — just not to be excluded,” Hagopian wrote in an email.
That was the worry for Sue Detienne, who spent weeks trying to secure vaccine appointments for her son Andy and daughter-in-law Beth. Beth has Williams syndrome, Andy has Down syndrome — which makes him more likely to die of COVID-19 than those in the general population — and both are diabetic.
The pandemic has made the couple more dependent on Detienne and her husband, she said. Special Olympics activities have been scaled back, Beth was briefly furloughed from her job in food service at Lawrence University in Appleton, and they’ve missed visiting with extended family.
Detienne estimates she made 100 calls, emails and other inquiries to try to secure them vaccine appointments before finding success at an independent pharmacy in Green Bay last week.
She said she got a different answer from each place she’s tried, and many of them didn’t immediately consider Andy and Beth eligible, even though they were.
“I understand waiting your turn,” Detienne said. “But their turn isn’t going to come up if there’s no box to check.”
Hospital rules, technology challenges are extra barriers for some
Erin Schultz and her colleagues qualified for the COVID-19 vaccine as soon as it opened to frontline health care workers. But she only recently was able to track down appointments for them.
Schultz leads SOAR Fox Cities, a nonprofit that provides programs and services for people with developmental disabilities. If it took so much effort to secure the vaccine for herself and her employees, she wondered, how much more challenging would it be for the people they serve?
“It’s difficult for me, and I’m neurotypical. I don’t live with a disability,” Schultz said. “Our participants and families who have additional barriers are struggling.”
She was glad to hear Andy and Beth could score appointments, but frustrated they had to travel to Green Bay to do so. Most families she spoke with who were struggling to get appointments, she said, had to travel outside the Fox Cities — one was looking as far as Dane County.
“(Andy and Beth) are lucky to have that level of mobility; the majority of our folks don’t,” Schultz said.
Another challenge, she said, is that hospitals’ strict visitor policies sometimes won’t allow a caregiver inside to help the person feel comfortable getting the shot. During the pandemic, many health systems have limited patients to just one visitor or asked that the patient come alone.
Many SOAR Fox Cities participants struggle to communicate verbally, Schultz said, and some aren’t able to walk independently. More than that, though, it’s a safety issue.
“If the participant is not with someone who knows them and is able to translate for them, they can’t adequately tell the professional what care they need and what they’re going through,” she said. “It adds a whole other layer of anxiety and uncertainty to being in that hospital setting.”
In some of those situations, she said, people have simply abandoned their appointments knowing their family member couldn’t go it alone.
That was an issue long before the vaccines arrived, Hagopian said. His office has intervened in a number of similar cases.
Transportation can also be a challenge, said Beth Swedeen, executive director of the Wisconsin Board for People with Developmental Disabilities. People in Medicaid long-term care programs qualify for non-emergency medical transportation services and can schedule a ride the same day as their appointment, she said, which has been helpful.
Still, not everyone has the time or resources. A fellow board member of hers who lives in a rural part of the state has yet to get his shot because the closest vaccinator is 30 miles away, and he hasn’t been able to line up a person to drive him.
Finally, there’s technology: While most clinics and health departments have eventually offered a phone number for people to call to make appointments, major health systems are still urging people to communicate about appointments virtually.
One parent Schultz spoke with was told there was no other option to make a vaccine appointment for her child outside of using an app.
“She was like, ‘Well, we don’t have it. What do you want me to do?’ ” Schultz recalled.
In push for equitable distribution, don’t forget ability and disability, advocates say
“I understand waiting your turn. But their turn isn’t going to come up if there’s no box to check.” Sue Detienne spent weeks trying to secure vaccine appointments for her son Andy (Downs syndrome, diabetes) and daughter-in-law Beth (Williams syndrome, diabetes)
As vaccine rollout moves forward, disability advocates will continue to watch for inequities, particularly as eligibility begins to open up to younger people.
Hagopian is worried about people falling through the cracks.
“From a logistical perspective, it’s easier if you can go someplace and vaccinate everyone at the same time. That’s a way easier proposition than trying to find 50,000 younger people with disabilities, some of whom who have intellectual disabilities, living on their own or in small group homes,” he said. “There just isn’t a mechanism to do that efficiently. The burden is on the person themselves.”
Swedeen said that, right now, the eligible person has to do the work to track down a shot, but she’s hopeful that could change in the next few weeks as more vaccine becomes available and messaging for people with disabilities gets clearer.
State health officials say they are meeting regularly with people with disabilities to take their recommendations for how the process could be improved.
DHS deputy secretary Julie Willems Van Dijk said the agency is working with its local partners to try to offer “vaccine navigators,” who, like other health care navigators for people with disabilities, would let them know they’re eligible and help them find an appointment.
Schultz said she hopes that hospitals, health officials, pharmacies and other community partners working to get everyone vaccinated can understand that a “one size fits all” approach won’t work for many people, including people with disabilities.
“We’ve had so many discussions about equity and inclusion as of late,” Schultz said. “I think it’s frustrating that when people are looking at those definitions they’re not including ability or disability. It’s a huge portion of our population that aren’t being included.”
For a plain-language guide to the COVID-19 vaccines from the Wisconsin Board for People with Developmental Disabilities, visit wi-bpdd.org/index.php/vaccine-information.