Incapacity rights advocates name for Ducey to prioritize individuals with disabilities in vaccine distribution

On Friday, February 26, the Arizona Center for Disability Law, along with various other disability rights organizations and members of the disability community, sent a letter to Governor Doug Ducey requesting a meeting to discuss access to vaccines with disability rights organizations Arizona Long Term Care System members and their caregivers, regardless of age or setting.

They also expressed their concerns and experiences about the inaccessibility of information and the lack of accommodation at the vaccination centers.

So far they have not received an answer.

This is the second letter from the ACDL and other organizations after an initial letter was sent to the Arizona Department of Health on December 14th regarding the fair distribution of the vaccine. This letter also received no reply.


The state recently changed the way the vaccine is distributed to classify it into age-based categories. This means that people with disabilities who do not live in group homes will have to wait even longer to receive the vaccine. People with disabilities are more likely to have underlying medical conditions that put them at higher risk of death from COVID-19.

In response to these two events, the coalition of organizations and members of the disability community held a press conference on Thursday March 4th asking the Arizona government to make vaccination a priority for people with disabilities.

The press conference was attended by many people from the community with different disabilities and backgrounds who spoke about their challenges and experiences in registering for an appointment and communication barriers.

“If people want to get the vaccine … there is nowhere to request communication shelter. It’s been an obstacle from the start, ”said Sherri Collins, executive director of the Arizona Commission on the Deaf and Hard of Hearing. “Imagine the communication barriers wearing a mask there. Can’t read lips, can’t communicate. This is the first encounter in everyday life. We are talking about access to information, registration and getting the vaccine. “

“There was no alternative communication. … There was a sign saying you should roll up your sleeves. If you are nonverbal or illiterate then how would you roll up your sleeve? It would be nice to have pictures, “said Sydney Ingle, an Arc Tempe member with autism.

CONNECTED: Arizona is moving to an age-based hybrid model for distributing coronavirus vaccinations

Speakers also discussed the frustrations of not having closed captions for briefing sessions and videos, extremely long waits on phone lines, and communication problems at vaccination sites.

“It was just a very frustrating experience to register for this vaccine. … Some other people have just given up within the Deaf community, “said Harvey Goodstein, a member of the ACDHH.

Another point that was raised with the extension of the eligibility to vaccinate to family members of people with disabilities. Members of the Differential Abled Mothers Empowerment Society (DAMES) spoke about how their children have faced myriad challenges and how their children are at high risk of infection and death from COVID-19. However, because some of their children are too young to receive the vaccine, they advocate that parents of children with disabilities should be eligible for the vaccine, as in other states

“We watched her [children’s] Therapists, relief providers and teachers were vaccinated and we waited for our turn, but we never received a call, ”said Michele Knowlten-Thorne, founder of DAMES. “There is a rift in the armor around our children. It’s us – we make our children vulnerable. If parents are not vaccinated, children are at risk. “

Ilyssa Tussing has a child with RYR1, a congenital muscle disease.

“I advocate giving parents of children with disabilities the opportunity to receive the vaccine because we are not asking to go to restaurants or the movies. We just want the opportunity to go to a grocery store, see our families, and even have therapists in our homes without the ability to bring a deadly virus to our children, ”Tussing said.

Sey In, an attorney for the ACDL, said they still hope the governor’s office and ADHD recognize the importance of addressing these challenges and working with disability rights organizations. However, they are also preparing for the possibility that they will not receive a response.

“Other states have filed complaints with the Civil Rights Office, so we are considering this and looking for other options,” In said.

Collins believes that if their team can have a seat at the table, they can offer their expertise so that everyone has access to the information and the vaccine.

Follow Udbhav Venkataraman on Twitter

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