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Advocates urging state to add those with intellectual, developmental disabilities to COVID vaccine priority list

In a Dec. 22 letter to state officials, 26 organizations asked for “specific consideration of people with intellectual and developmental disabilities and other disabilities who have been found to have significantly increased risk of death following infection with COVID-19.”
Quincy vaccine
Quincy Malecki receives a COVID-19 vaccination at Imagine!’s Mark Emery Foothills Group Home on Thursday. Imagine! began receiving vaccinations for group home staff members and residents on Thursday, but advocates are calling for those with intellectual and developmental disabilities not living in group homes to be prioritized for vaccines.

As state and local health officials work to provide COVID-19 inoculations to those included in the first stage of Colorado’s vaccine rollout, advocates are calling for people with intellectual and developmental disabilities to be prioritized in future phases.

In a Dec. 22 letter to Gov. Jared Polis, the Governor’s Medical Advisory Group Subcommittee and the Governor’s Expert Emergency Epidemic Response Committee, 26 organizations asked for “specific consideration of people with intellectual and developmental disabilities and other disabilities who have been found to have significantly increased risk of death following infection with COVID-19.”

And while state officials will wait to see what directives the Biden administration will issue regarding vaccination priorities, Ailsa Wonnacott, executive director of the Association for Community Living, said she and other advocates plan to keep “squeaking the wheel” to draw attention to the issue. 

“Right now the most important thing is to make sure we don’t lose sight of those with IDD that are so incredibly vulnerable,” said Wonnacott, whose advocacy organization for individuals with intellectual and developmental disabilities was founded in Boulder in 1962 and recently moved to Longmont.

“We’re trying to be the squeaky wheel,” she said, adding she knows health officials options are limited in how they can change the vaccine priority schedule. “My responsibility is to let you know about this; your responsibility as a public health department is to listen.” 

The state is still in Phase 1 of its vaccine rollout and Phase 2 is not expected to begin for months, according to the Colorado Department of Public Health and Environment. As part of Phase 1B, priority right now is being given to people 70 and older, who also have been found to be more likely to die from COVID. CDPHE in an email said 78% of Colorado’s COVID-19 deaths were among people older than 70.

“Our vaccination plan is designed to save as many lives as possible and put an end to the emergency caused by the pandemic as quickly as possible. … We are routinely evaluating our vaccine distribution plan and adjusting to ensure an equitable and efficient rollout,” the state health department stated in its email. “We could make additional changes as more data and additional federal guidance becomes available.” 

The vaccination timeline is dependent on the supply chain and CDPHE stated it hopes in March to start vaccinating frontline essential workers, who also are part of Phase 1B. “Phase 2 vaccination will follow, but the timeline for that is not definitive,” it stated.

Citing research by FAIR Health, West Health and the John Hopkins University School of Medicine that found people with intellectual disabilities and developmental disorders are at increased risk of death following COVID-19 infection, the advocates’ letter urges state officials to ensure they are specifically prioritized in Phase 2 of distribution.

“Once you’ve had the vaccine, you get some protection,” Wonnacott said. “We really want to get those most vulnerable people vaccinated as quickly as possible so even if they get COVID, they won’t die from it.”

Individuals with intellectual and developmental disabilities are at higher risk for COVID for a number of reasons, including underlying health conditions and living in congregant settings such as group homes, said Rebecca Novinger, CEO of Imagine!, which provides support and services to people with developmental, cognitive, and physical challenges in Boulder and Broomfield counties.

Those living in group homes are included in the first phase of the state’s vaccination plan and Imagine! this week celebrated residents of its facilities receiving their first shots. However, individuals with IDD that don’t live in such homes and their families also rely on services they might not be able to or feel comfortable accessing right now, Novinger said. 

Some children and even adults with IDD have high needs and require 24/7 care, which means parents are working around the clock in a “hyper quarantined state,”  she said. Pre-COVID, parents could rely on respite care or babysitters or just sending kids to school to protect their well-being, but because of the pandemic “all of that stopped,” Novinger said. 

“All of the families we serve haven’t been able to bring in those additional resources and they are feeling the effects of 11 months of being locked down at home,” she said, adding that it is important for parents of children with IDD to also be prioritized for vaccination. 

Wonnacott said she knows of one family that hasn’t had face-to-face interaction with a service provider for more than three months. “They’re the people who are waiting for the vaccine. But mom, 68, and son, 32, are not going to get a vaccine anytime soon.”

Economic and social factors such as being more likely to be employed in service industry and production jobs with fewer remote work options and reliance on public transportation also contribute to the risk of exposure for adults with IDD, Novinger said.

Adults and teens with IDD also might be more isolated during the pandemic for a number of reasons such as access to or ability to use technology, Novinger and Wonnacott said. 

While Novinger said not everyone with IDD is struggling with technology access or functionality, Wonnacott said, “we’ve found that, across the board, people with developmental disabilities are on the wrong side of the digital divide. At some point this is going to become a big problem.” 

Despite the challenges posed by COVID to the individuals and families the nonprofit serves, Imagine! public relations director Fred Hobbs said there have been bright spots.

“It’s important to note that Imagine! is uniquely positioned in that our services are all about being a part of the community. When COVID hit and that all changed, it was quite a challenge,” he said. “Some challenges remain, but I’m very proud of our organization, especially our staff, for the way they were able to quickly adjust and make it work. … Our community has been very helpful not only through the pandemic, but also as we’ve tried to advocate that our particular population get some (vaccine) prioritization.”

And while Boulder County Public Health cannot deviate from the state’s phased rollout, it has heard the calls for those most at risk to be vaccinated as quickly as possible.

“We would love to be able to get everyone vaccinated who wants a vaccine, especially people who might be at higher risk,” communications specialist Mike Stratton said in an email. “There are two constraints. The first is that everyone providing vaccines to the public needs to follow the state's prioritization list, which doesn't currently specify people with IDD. The bigger issue is really the lack of vaccine supply. Currently all providers in the county receive about 3,000 doses a week, and there are about 266,000 adults in the county. Until the supply increases it will take a while to get everyone vaccinated.”

As she and other advocates await word on timing of vaccines and prioritizing the populations they serve, Wonnacott said, “I hope that the advocacy movement that is supporting other marginalized people is working as hard as the IDD movement. I’ve seen people at the local and state level doing all kinds of miraculous work.”