Jose Muniz prepares a COVID-19 vaccination at American research centers in Hollywood, Florida (Joe Raedle / Getty Images / TNS)
People with developmental disabilities are at a significantly higher risk of dying from COVID-19. However, whether or not people have access to vaccines depends on which state – or even which county – they live in.
Disability advocates say access has increased. As of December, only 10 states have targeted people with developmental disabilities specifically in their COVID-19 vaccine rollout plans, according to the American Network of Community Options and Resources (ANCOR), which represents disability service providers across the country.
To date, ANCOR has grown to at least 31 states.
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“We are very pleased that the number of states has improved,” said Donna Martin, director of state partnerships and special projects at ANCOR.
Martin stated that she had also heard from individual counties that had decided to give priority to people with developmental disabilities regardless of their state.
Research shows that people with developmental disabilities are three times more likely to die from COVID-19. Accordingly, disability advocates have been campaigning for months to ensure that this population has early access to life-saving vaccines. When the Centers for Disease Control and Prevention did not include people with developmental disabilities in their recommendations for priority groups, advocates had to take their case to individual states.
As a result, in some places like Tennessee, vaccines in the highest priority group have been made available to all adults with developmental disabilities who are unable to live independently. However, states like California and North Carolina have prioritized people with disabilities in favor of other groups, so proponents have had to struggle to regain faster access. California then reversed course under strong pressure from supporters.
Still, other states like Mississippi, Idaho, and Arkansas have “pretty much kept quiet” about people with developmental disabilities, Martin said.
Even in many places where people with developmental disabilities have priority, differences persist, with access to people in residential areas such as facilities and group homes, but not accommodation for those who live with family or in other community situations.
“It varies so widely from state to state, and even county to county, that we can’t really give a solid estimate of how it’s going,” said Martin. “My main concern is that many states have shifted to include people with IDD in their ‘priority groupings’, but that grouping tends to represent people with IDD in (long-term care) and / or group homes. The population is divided into subgroups – group home versus community – in which people at an equally increased risk of serious consequences do not have equal access to the vaccine. “
The Disability Health Research Center at Johns Hopkins University and the Center for Dignity in Healthcare for People with Disabilities at the Center for Excellence in Developmental Disabilities at the University of Cincinnati launched a new dashboard this month to keep track of where people with disabilities are prioritizing every state.
The tool, which is updated weekly, stops working when vaccines are available for people with disabilities in four different groups – in long-term care facilities such as nursing homes, individuals in other community settings such as group homes, people with chronic conditions, and other groups. Depending on the state, this last category may include those who receive direct community support, people with intellectual or developmental disabilities, or those who benefit from certain Medicaid programs.
Sabrina Epstein, a student at Johns Hopkins with Ehlers-Danlos Syndrome, came up with the idea of tracking vaccine prioritization in different states after it was difficult to determine when she would qualify.
“We want people using this tool to be able to determine if they or their family or friends are qualified for a vaccine in their state and to encourage them to lobby,” Epstein said.
Meanwhile, the National Council on Disability, a federal agency tasked with advising the President and Congress on disability issues, is urging governors to work to ensure that people with disabilities have better access no matter where they call home.
“As you know, people with disabilities are disproportionately affected by the COVID-19 virus,” wrote NCD Chairman Andrés Gallegos in a letter to New York Governor Andrew Cuomo in his capacity as chairman of the National Governors Association. “As the distribution and allocation of the vaccine continues, we urge you to emphasize to governors and health departments the need to establish a fairer framework in which people with disabilities with IDD, people with reduced mobility and people with underlying health conditions can enter Priority groups are included, regardless of their setting. “