The rollout of the coronavirus vaccine has received justified criticism for its inefficiency. One area of concern for those with Down syndrome and their caregivers are how their home state’s plan prioritizes them for receiving the vaccine.
As detailed in the series of posts on the coronavirus, it has been known from the start that individuals with Down syndrome would be at greater risk if they became infected with COVID-19. Multiple studies found that, indeed, they are at one of the highest risks for death from the virus.
Yet, when the Centers for Disease Control issued its recommendations for administering the vaccine in phases, “Down syndrome” was in the last group of the first phase, i.e. 1C, following 1A and 1B.
Many states are following those recommendations. However, many are placing Down syndrome into a higher priority phase.
Ohio may have been the first state in the nation to move “Down syndrome” up to Phase 1B. In the surrounding states of my home state of Kentucky, several others have followed suit. Indiana, Illinois, and Tennessee either have moved those with Down syndrome up in the priorities for getting the vaccine or included their caregivers in 1C. Missouri has prioritized those with Down syndrome ahead of teachers, childcare workers, and others listed as “essential workers” by the CDC. And, West Viriginia‘s rollout of the vaccine has had the most success in getting the most people vaccinated, percentage-wise, of all states.
In Kentucky, while those with Down syndrome remain in 1C, many caregivers to loved ones with Down syndrome have been able to get the vaccine. Through guidance issued by the Division of Medicaid Services, those caregivers to individuals with Down syndrome on one of Kentucky’s Medicaid waivers are considered “health care workers,” putting them in 1A.
But, in other states, advocates for those with Down syndrome are having to try to convince their state vaccine plans to properly prioritize individuals with Down syndrome and their caregivers.
In Georgia, ironically where the CDC is headquartered, after following the recommended 1A phase for essential health workers and those in long term care facilities, its plan then prioritizes all Georgians 65 and older ahead of even essential non-healthcare workers and those with Down syndrome. Though also home to one of the national Down syndrome advocacy organizations, people with Down syndrome in Georgia have yet to be included in a higher priority phase.
So, I am curious how your state is doing when it comes to prioritizing those with Down syndrome and their caregivers?
UPDATE: Less than 24 hours after this post went up, the incomparable Amy Allison from the Down Syndrome Guild of Kansas City alerted me to the very helpful “Vaccine Priority At A Glance” from the American Network of Community Options & Resources (ANCOR), pasted above. This chart is updated regularly and can be checked at this link. ANCOR’s more detailed analysis of each state plan, referenced in the chart, can be accessed here.
UPDATE: The Johns Hopkins Disability Health Research Center and the Center for Dignity in Healthcare for People with Disabilities (of which I am a committee member) has created a dashboard tracking how individuals with disabilities are prioritized by each state’s vaccine plan. The dashboard is available at this link.
Please share in the comments how your state is prioritizing those with Down syndrome and their caregivers. As this post goes to press, it is being reported that Georgia may be moving those with IDD up and their caregivers.
After much advocacy with a joint letter from advocacy organizations, social media campaigns, reaching out to state leaders, and media coverage, Georgia state leaders have finally said they will move people with ID/DD and their caregivers up in priority alongside teachers in 1B. It was a frustrating few weeks as we received no response, but this is happy news! Please email me at stephaniem@canisterco.com if you want any templates for what we did <3
Our Down Syndrome adults aren’t included until 1C, which isn’t expected to begin until May. Our kids need these vaccines before everyone else. They are 10x more likely to die from covid. They should’ve been included in 1A with institutions and group homes, not skipped because they still live at home. Michigan isn’t doing the right thing by putting them so far down the groups for vaccines.