Nurse Karen Schwartz offered some words of encouragement to Dominique Freeman, left, who has Down syndrome and is terrified of needles.

 Steve Freeman

Overlooked, vulnerable and feeling forgotten.

For some people with disabilities, getting the COVID-19 vaccine has been a long wait, a logistical nightmare or both.

β€œIt’s set up to cater to people who are able-bodied, who are tech-savvy and who know how to search many different websites,” said Sey In, a staff attorney with the Arizona Center for Disability Law. β€œPeople are experiencing difficulties.”

Some of the problems In said he’s been hearing about include:

  • The websites to sign up are not user-friendly or compatible with certain accessibility software.
  • Accommodations at shot sites are not automatic.
  • There are not enough auxiliary aids and services available such as large print materials or

American Sign Language

  • interpreters.

South Tucson resident Johanna Weisberg was anxious about accessing the shot for her husband, Germaine Moore, who has cerebral palsy and is blind. Weisberg said their challenge wasn’t unfriendly technology but waiting for him to become eligible, and staying safe in the meantime.

There was a push β€” when vaccines first became available in December β€” to include people with disabilities in the first eligible category, 1B, because many are highly vulnerable to the virus, said Dr. Will Humble, executive director of the Arizona Public Health Association and former state health director.

That didn’t happen.

It’s only been recently, nearly four months later, that people with disabilities have started feeling more hopeful about getting the vaccine, said Jon Meyers, executive director of the Arc of Arizona, a statewide advocacy group.

When the state-run sites opened up shots March 24 to everyone 16 and older, instead of allowing people with disabilities to get shots first as part of the 1C eligibility group, people felt overlooked.

β€œThey were thrown into this mass of 5 million or so people,” he said, β€œand they had to compete for spots right when they were about to get some sort of prioritization.”

Weisberg said she kept close watch on the rollout and kept hoping for their chance. β€œBut every time there was a change,” she said, β€œit was age-based.”

That changed in late March when Pima County’s vaccination sites deviated from the state’s updated protocols and instead opened it up to people 16 and older based on vulnerability. That included anyone living with a disability.

The Weisbergs were elated when a flyer on their doorstep announced a mobile β€œpop-up” clinic was coming to their neighborhood.

The shots, which they both received in late March, were brought to them through a collaboration between La Frontera Center, a social services provider, as well as the Pima County Health Department and Premier Medical Group.

β€œWe Wish it had happened sooner”

Advocates say pop-up sites like the one offered in the Weisbergs’ community in late March are one of the best solutions for people with disabilities who are having trouble with scheduling or getting to a shot site.

That idea was one of several discussed during an online informational session recently hosted by the Arizona Developmental Disabilities Network. More than 100 people joined, and these are some of the stories shared by people seeking help and advice:

  • A mother who needs to help her adult son, who has autism, prepare for the shot by doing several minutes of deep-breathing exercises with him right before the needle goes in.
  • A woman who is deaf had to reschedule her shot because no one on site for her first appointment knew American Sign Language.
  • A man who cannot get the shot in his arm because he doesn’t have enough muscle mass there to tolerate a needle.

Desert Survivors Nursery in Tucson is a non-profit organization that employs adults with intellectual and developmental disabilities.

Their experiences illustrate how people with disabilities, or loved ones advocating for them, must adapt in ways others don’t have to consider.

Several people on the call said the state and county computer programs were troublesome if not impossible for them to use. Many were instead trying to schedule by telephone.

What they are experiencing is not unusual.

Research by Kaiser Health News found websites providing vaccine registration options and COVID-19 information often violate disability rights laws and delay people with disabilities from accessing the vaccine.

Kaiser asked WebAIM, a nonprofit focused on web accessibility, to check 94 websites from 50 states and the District of Columbia. Accessibility issues were found in nearly all of them.

Another challenge is a lack of straightforward language a person with cognitive disabilities can easily understand, said Jamie Neidorf, who is with Tucson’s Direct Advocacy and Resource Center. The assumption is that everyone has someone who can help them, she said, β€œbut that’s not true.”

More outreach is starting, however.

Since vaccinations were made available to all Arizonans 16 and older late last month, the state’s Division of Developmental Disabilities has contacted more than 11,000 members who had not yet received a first dose of the vaccine. It did so to share the criteria, to provide help if members cannot navigate the state’s website or need to schedule by phone, and to see about transportation needs.

The state has also provided vaccine for a clinic being held at the Ability360 Center on Saturday and Sunday, April 10-11, in Phoenix for people with disabilities living in that area. Appointments are required and, as of Friday, April 9, only 80 of the 2,000 spots were still open.

β€œFingers crossed that this will prove that there is a need for events like this around the state,” said Meyers of Arc of Arizona. β€œThis has been a long time coming, and we wish it had happened much sooner.”

β€œHospitalization was traumatic enough”

For Steve and Kathy Freeman, the challenge was getting their 24-year-old daughter, Dominique, who has Down syndrome, to allow the shot when it recently became available to her.

She is terrified of needles, especially after spending two weeks in the hospital dangerously sick with COVID-19 and on a ventilator.

The Freemans were able to get Dominique the shot last weekend at the University of Arizona’s state site but only with the help of a registered nurse named Karen Schwartz, who is a nurse lead for the UA site.

Kathy Freeman said they gave Dominique a mild sedative before driving over, but their plan almost failed.

β€œShe woke right up when they wiped her arm with the alcohol wipe,” Freeman said. Luckily, Schwartz was there to offer some kind words and encouragement.

β€œNurse Karen came to the rescue,” Freeman said, β€œand it was a success.”

The entire Freeman family got sick with COVID-19 back in December. Steve Freeman was in the hospital for a few days because of low oxygen, and so was their other daughter, Alexis.

The sisters were across the hall from each other at St. Joseph’s Hospital, but Dominique was much sicker. The Centers for Disease Control and Prevention lists Down syndrome as a high-risk condition when it comes to COVID-19.

β€œIt’s been so traumatic for her,” Kathy Freeman said of Dominique. β€œHer hospitalization was traumatic enough without us adding to it (with the shot).”

The entire Freeman family got sick with COVID-19 in December. Steve, right, and daughter Dominique, center, were hospitalized. β€œIt’s been so traumatic for her,” says Kathy of her 24-year-old daughter, who has Down syndrome. Getting her vaccinated presented another challenge.

In late March, Sandy Roberson and her 28-year-old son, Alan, waited in line for a Johnson & Johnson shot at a mobile clinic, but the shots ran out before they got a chance.

Roberson said getting the vaccine for Alan, who has autism, has been a bit of a difficult decision. She’s afraid about how his body might react, but she’s even more afraid of having him get COVID-19.

On April 1, Alan got the shot at Tucson Medical Center’s Rincon Health Campus on East Drexel Road, and his mom is relieved.

Alan has been home constantly throughout the pandemic, she said, and it’s not good for him.

Alan Roberson, who has autism, gets a shot of the Johnson & Johnson vaccine at Tucson Medical Center’s Rincon Health Campus.

β€œI’ve got to get him back out there,” she said, β€œand have him work at trying to do relationships and friendships.”

β€œNo time to waste”

There are about 9,000 Pima County residents with disabilities enrolled in the Arizona Long Term Care System, county data show, with another 10,000 or so outside that system.

Clinics are being planned for people who are blind or visually impaired, as well as those who are deaf or hearing-impaired, said Dr. Theresa Cullen, the county’s medical director. The county does not disclose the dates of these events because they are not open to the public.

Cullen said health officials are also trying to reach more people who are homebound and plan to use the one-dose Johnson & Johnson so just one visit is needed.

There is a link on the county Health Department’s web page for vaccine registration for homebound individuals, said Susan Graham, an administrative specialist with the department. She said people can also call the county’s help line to get help with registration.

So far, Pima County has administered more than 13,500 shots at 34 mobile clinics and there are more currently scheduled. The goal is to hold two or three mobile clinics each week. The county is also working to provide more transportation assistance to people who need it, Graham said.

In, of the Center for Disability Law, encouraged people who need accommodations to contact the government agency providing the shot to tell them what they need.

The Arizona Department of Economic Security is partnering with the Arizona Department of Health Services to reserve appointments at state-run vaccination sites for people with developmental disabilities. Those who are eligible will receive communication informing them of available appointment slots.

Consistently left behind

One of the things that frustrates people with disabilities and their advocates: The sites were designed in a hurry and people with disabilities are just starting to be accommodated.

β€œThe bottom line is people with disabilities are always left out,” said Michael Hingson, a national disabilities advocate.

Hingson, who has been blind since birth, became well known after he escaped the north tower of the World Trade Center during the Sept. 11, 2001, terrorist attack. His former guide dog, Roselle, was by his side as they walked down 78 flights.

The state’s vaccination site has been updated with NVDA, which stands for NonVisual Desktop Access, on both Chrome and Firefox, said Steve Elliott, spokesman for the Arizona Department of Health Services. The state agency is still working to get Windows Narrator working as well. In Pima County, the state runs one site, at the UA.

β€œWe work with our vaccination site partners to provide ASL interpreters and other support for individuals with disabilities,” said Holly Poynter, a spokeswoman with ADHS. β€œOur state vaccination sites have protocols in place to serve individuals who are deaf or hard of hearing including written communication materials to replace verbal communication when needed.”

If there is a vaccine site that’s not accessible, Hingson said the company he works for will provide programming free of charge. Hingson is the chief vision officer at AccessiBe, which provides web accessibility for people with disabilities.

β€œThere’s no reason that websites should not be accessible today,” he said, adding that more than 20% of people in the country have a disability. β€œIt’s a great time to hurry up and do it. There’s no time to waste.”

β€œNot enough energy” to fight infection

Michelle Bartlett’s 20-year-old son, Jacob, has Wolf-Hirschhorn syndrome as well as cerebral palsy, epilepsy, autism and mitochondrial disease.

β€œWe’ve pretty much been at home since the pandemic started and are not able to take him out,” said Bartlett, who explained that especially due to the mitochondrial disease, her son would β€œnot have enough energy in his cells” to fight off an infection like COVID-19.

People with a combination of disabilities like Jacob’s are three times as likely to have a severe response to COVID-19, she said, but his time to get the shot just became available.

β€œEvery state has done the same thing, offering shots based on age,” she said. β€œIt’s frustrating.”

That changed when the county recently opened up shots at its sites to those 16 and older with certain medical conditions. (Subsequently, it made another change, and appointments are now available to any country resident 16 and older).

In late March, after securing an appointment, Bartlett and Jacob headed to Tucson Medical Center to get his shot, but it didn’t work out because only the Moderna vaccine was being offered. Bartlett said they’d been advised to get Pfizer because it would be easier on Jacob’s system.

Back to the phone calls.

On March 31, they got a spot and headed over quickly to get Jacob his first dose of Pfizer.

Bartlett said she received her vaccine in January because she works a few hours a week as an attendant with United Cerebral Palsy, and her husband got his already as a retired member of the military.

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Contact reporter Patty Machelor at pmachelor@tucson.com or 806-7754.

On Twitter: @pattymachstar