Despite High Risk, Access To COVID-19 Vaccines Uneven For Those With IDD
People with developmental disabilities are at significantly greater risk of dying from COVID-19, but whether or not individuals have access to vaccines is coming down to which state — or even which county — they live in.
Disability advocates say that access has increased. As of December, just 10 states specifically addressed people with developmental disabilities in their COVID-19 vaccine rollout plans, according to the American Network of Community Options and Resources, or ANCOR, which represents disability service providers across the nation.
To date, ANCOR said that has grown to at least 31 states.
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“We are really pleased that there has been an improvement in the number of states,” said Donna Martin, director for state partnerships and special projects at ANCOR.
Martin indicated that she’s also heard of individual counties that have elected to prioritize people with developmental disabilities independent of their state.
Research shows that people with developmental disabilities face a three times higher risk of dying from COVID-19. Accordingly, disability advocates have been pushing for months to ensure that this population receives early access to life-saving vaccines. But, when the Centers for Disease Control and Prevention failed to specify those with developmental disabilities in its recommendations for priority groups, advocates were left to plead their case with individual states.
As a result, in some places like Tennessee, vaccines were made available in the highest priority group to all adults with developmental disabilities who are unable to live independently. However, states like California and North Carolina moved people with disabilities down on their priority lists in favor of other groups, leaving advocates to fight to regain quicker access. California subsequently reversed course under intense pressure from advocates.
Still, other states like Mississippi, Idaho and Arkansas “have been pretty silent” about people with developmental disabilities, Martin said.
Disparities remain even in many places where individuals with developmental disabilities are being prioritized, with access given to those in residential settings like institutions and group homes, but no accommodation for those living with family or in other community-based situations.
“There is such great variability from state to state and even county to county that we cannot really provide a solid assessment of how it is going,” Martin said. “My prevailing concern is that while many states have shifted to include people with IDD in their ‘priority groupings,’ this grouping tends to represent people with IDD in (long-term care) and/or group homes. The population is divided into subsets — group home versus community — wherein people with equally elevated risk of severe outcomes do not have equal access to the vaccine.”
With such inconsistency across state lines, Johns Hopkins University’s Disability Health Research Center and the Center for Dignity in Healthcare for People with Disabilities at the University of Cincinnati Center for Excellence in Developmental Disabilities launched a new dashboard this month to track where people with disabilities fall in each state’s prioritization.
The tool, which is being updated weekly, breaks down when vaccines are available to people with disabilities in four different groups — those in long-term care settings like nursing homes, individuals in other congregate settings such as group homes, people with chronic conditions and other groups. Depending on the state, this last category can include those receiving direct support in the community, people with intellectual or developmental disabilities or those who benefit from certain Medicaid programs.
Sabrina Epstein, a student at Johns Hopkins who has Ehlers-Danlos Syndrome, came up with the idea to track vaccine prioritization across states after finding it difficult to determine when she would qualify.
“We want people to be able to use this tool to identify if they or their family or friends qualify for a vaccine in their state and to advance advocacy efforts,” Epstein said.
Meanwhile, the National Council on Disability, a federal agency charged with advising the president and Congress on disability issues, is pressing governors to step up and ensure that people with disabilities have better access, no matter where they call home.
“As you are aware, persons with disabilities are disproportionately affected by the COVID–19 virus,” NCD Chairman Andrés Gallegos wrote in a letter this month to New York Gov. Andrew Cuomo in his capacity as chair of the National Governors Association. “As the distribution and allocations of the vaccine continues, we urge you to emphasize to governors and health departments that more equitable frameworks must be determined that incorporates persons with disabilities with IDD, those with limited mobility, and those with underlying health conditions in priority groups, regardless of their setting.”