ARIZONA, USA — Advocates for those with disabilities expressed their concern and frustration Thursday about the vaccine distribution phases.
They say their attempts to get the Governor’s Office to recognize the disabled community as a high-need group, have gone unanswered.
For many of those with disabilities, who do not live in nursing or care homes, the wait to get a vaccine is a matter of life and death.
Louis Hopkins suffers from Myotonic Dystrophy, a genetic disorder that causes progressive muscle weakness, including in respiratory muscles. Hopkins relies on a constant stream of oxygen to survive.
“You know, if he lived in a group home or if he lived in a nursing facility, he would have already been vaccinated," said Catherine Hopkins, Louis’ mother.
Catherine is the sole provider for 46-year-old Louis. Since he lives with her, he did not qualify for the 1B vaccine category like individuals living in assisted care, despite his serious respiratory struggles.
Myotonic Dystrophy claimed the life of Louis’ older brother, Paul, who died of respiratory failure from the disease. Catherine is afraid of losing Louis to the same thing as a consequence of possible COVID-19 exposure.
“He wouldn’t make it,” she said. “He would not make it. Especially since it attacks the respiratory system.”
Advocates have also brought up concerns with the lack of assistance available for people with any kind of hearing impairment, including deafness.
“I can tell you my first vaccine experience was chaos,” said Sherri Collins, the Executive Director for Arizona Commission for the Deaf and the Hard of Hearing.
“It was at night and I must have encountered about 12 different people through the entire process. Not one person offered to communicate in writing. I had nothing. Luckily, my husband was with me and he was able to assist or facilitate the communication.”
Access to American Sign Language interpreters is vital for the hearing impaired, according to Collins.
She pointed to a Federal Emergency Management Administration model as an example of how the state should plan their communications.
“FEMA had a checklist for the vaccine for people with disabilities,” said Collins. “For our community who are deaf or hard of hearing or deaf-blind, our biggest concern is communication access and access to information from the beginning of the COVID-19 pandemic to now, the vaccine rollout.”
Collins also points to issues with the registration website, saying it lacks an option for communication accommodation or any other disability accommodation option.
Sey In said she understands that the disability community is large and diverse in their needs, but said that, so far, the state government has turned its back on one of the most vulnerable segments of Arizona’s population.
“We’re just really concerned, given the limited quantity of vaccines, and given the persistent effort that we’ve made and having no feedback whatsoever,” In said.
Moving forward, the advocates hope the state’s government will include people with disabilities in its planning of communication and vaccination efforts.
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