The pandemic hit people in the Intellectual and Developmental Disabilities community with many challenges and left an already marginalized group even more vulnerable. Prioritization of vaccination in this group is crucial, but Arizona’s vaccination plan for this community has been variable based on where one lives.
The definition of IDD can vary based on the organization. Intellectual disabilities are characterized by problems with intellectual functioning such as the ability to read, learn, problem-solve and adapt to social situations. Developmental Disabilities can is a huge umbrella term encompassing both physical and mental life long disabilities. Some examples include Cerebral Palsy, Autism Spectrum Disorder and Down Syndrome.
In Arizona, people in the IDD community can live in a variety of settings including living by themselves, with their families, in a developmental home, group homes, skilled nursing facilities and others. In a developmental home, a family that has a licensed caregiver can care for up to three people with disabilities. Group homes are licensed residential facilities that can provide room and board for up to six residents. Each individual may receive support with daily activities from a direct support professional based on their individual needs. Click here for a more exhaustive list.
The Arizona Department of Developmental Disabilities shows that out of the 45,000 people receiving services from the DDD, nearly 40,000 people live in a family setting or independently, while 5,000 live in licensed facilities.
Adults with disabilities may be two to three times more likely to have underlying medical conditions like heart disease, cancer or diabetes. These put them at a higher risk of experiencing the more serious effects of COVID-19. Multiple studies show that people receiving IDD services who were infected by COVID-19 experience higher fatality rates compared to those who are not. The Centers for Disease Control and Prevention has determined that people with Down Syndrome have an increased risk of experiencing severe illness from the virus.
Currently, the only mention of people with IDD in the Arizona Department of Health Services distribution plan is people and staff residing in DDD licensed group homes. They are to receive the vaccine in Phase 1A. This is important because people residing in congregate settings like group homes are more likely to get infected due to the higher number of people entering and exiting the facilities throughout the day.
Group homes, like long term care facilities and nursing homes for seniors, had the option of partnering with pharmacies like CVS and Walgreens to set up a clinic at the group homes to directly deliver the vaccine.
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Trevor Bryson, the Tucson district director of Aires LLC — a provider for people within the IDD community — spoke in greater detail about this process. They decided to partner with Walgreens. The company submitted some initial surveys and registered their clients and direct support professionals, obtaining legal guardian consent for some of the clients.
Even though group homes are considered to be long term care facilities, they are different from facilities like nursing homes. In Tucson alone, Aires LLC has over 30 group homes and independent living arrangements.
“We were able to coordinate with Walgreens to schedule clinic days so that people could come to one centralized location as opposed to having Walgreens go to these different places,” Bryson said. “We chose to set it up in our Day Treatment Center, which was closed due to the community spread in Arizona.”
Bryson said that they received the Moderna vaccine. Working with the Walgreens' representative, they worked together to set up the clinic with a registration and screening area, a place to administer the vaccine, and a waiting area to monitor for potential adverse reactions afterward.
“We had 70% of our residents and 30% of our staff come in. They were scheduled in time slots,” Bryson said. “For the first 20-30 minutes, it was just getting into the routine of how it was all to run … . After those 20-30 minutes, it ran pretty smoothly. It seemed that Walgreens was pretty efficient.”
They also registered the direct support professionals working in the homes of members of the community to receive the vaccine. The Tucson location Aires LLC has two more clinic dates set in February and March.
While vaccinating the group home population is really important, it only accounts for 5,000 of the 45,000 people living with IDD in Arizona. People not living in congregate settings are equally vulnerable to the severe effects of COVID-19.
Jon Meyers, the executive director of the Arc of Arizona — a Disability Advocacy organization — says that the distribution guidelines for the rest of the IDD community has been inconsistent and argues the distinction between congregate and non-congregate settings does not make sense.
“We’ve divided a group of people who have everything else in common just based on where they live … they all come into contact with other people, they all come into contact with provider staff or medical professionals or people in the community,” Meyers said. “Yet just because they can live in a group home they can get the vaccine.”
Although Arizona has a general, phased plan for vaccine distribution, each county is executing the plan based on its own circumstances. And except for group homes, there is no explicit mention of the IDD community in the plan.
For example, a person with Down Syndrome living in a group home is part of the Phase 1A. If they live in Pima County, they are eligible to get vaccinated in Phase 1B, but if they live in Maricopa county, they must wait until Phase 1C. In other counties, they might not even be in Phase 1.
The Arc of Arizona along with a coalition of other disability advocacy organizations are severely concerned about the lack of explicit, consistent prioritization of people in the IDD community across counties. They are advocating for all people with IDD to be explicitly included in the Phase 1B or even 1A category for the entire state.
Especially in light of the newer, more contagious and virulent strains of COVID-19, the coalition has been advocating for everyone in this community to get access to the vaccine before it is too late.
“We’ve been told by the DDD and ADHS that Phase 1B could be ongoing for several months before 1C starts. Even if people with IDD get included in 1C, it could be April before they are eligible to get their shots,” Meyers said. “We want them moved up to the categories that are currently being served so they are protected as soon as possible.”
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