Maine Developmental Disabilities Council

Maine's Vaccination Plan: Leaving Many Behind

by Nancy Cronin, MDDC Executive Director

Cartoon of person reaching up towards hand holding a vial of COVID-19 vaccine

When I read that vaccination access in Maine would be allotted by age group, I understood how this approach could be viewed as equitable.  Then I envisioned people all poised above their computer keyboards waiting to schedule their shot - in the same way that people crowd the internet the moment tickets for a popular concert are about to go on sale, hoping that their clicky fingers would be fast enough to get that golden ticket. 

That is anything but equitable.  That is public health by lottery.  Yes, there is a phone number to call, but once they have registered, the individual is told not to call back, that they will receive a call when their appointment is available.  I watched my 84-year-old mother call that number over and over again.  When the appointment call happened, she couldn’t get to the phone before they left a message.  Then she had to call again and the cycle of waiting went on.  Like the online process, the phone method leaves the patient hoping that they will be lucky but essentially blind to their actual access to an appointment. 

It was only when I, a 50-year-old professional, by chance heard about extra shots in Bangor and immediately hopped on the internet that I was able to score my mother a slot.  I then took two days off from work to drive her several hours there and back.  We were lucky - I have a job that gives me the flexibility to take time off and I was able to hover around that computer.  I hear that those shots were all accounted for a couple hours later… We scored!

How many 70+ people have still not had the opportunity to access a lucky click or connection to score the vaccine?  Why have they not been able to access this life-saving medicine?  Because the system is biased towards people who have access to time and endurance to keep pushing their place in line, access to the technology, technological literacy, and access to regular transportation.  This is not equal across the board for 70+ people.  So, as we wait for those 60+ to take their turn, the 70+ who have not been able to access will likely have to wait until the mob of technologically savvy 60+, and then 50+, 40+, 30+, 20+ all take their turns, before they have a chance to access the vaccine - until someone notices that they haven’t yet gotten a shot and have the will and ability to help.

I never thought Darwin’s “survival of the fittest” directly correlated to public health policy, but that does appear to be the way of this process to vaccinate the masses.  Let the strongest, most able, most connected get the shot first.  Those who are less connected, and likely more vulnerable, will have to continue to segregate from their community and continue to spin the slot machine hoping not to come up with a lemon, or in this case a particle of COVID-19.  There is no depth in this age vaccination roll-out policy, no failsafe to ensure that those at highest risk, but not connected technologically or through congregate care housing, are able to access the lifesaving shot.

Who are those at highest risk?  Clearly, advancing age is a very significant risk factor for dying from COVID-19.  Yet this policy in practice misses the complexity of the realities of access.  As of writing this blog, there are no systemic protections to ensure that the 85-year-old woman who has no family to advocate for her and is not living in or connected to a congregate living setting will actually be able to access the shot.  From what I can see, there is no plan for actively reaching out to all Medicare-eligible-aged individuals to ensure they have access.  The system is relying on the elderly who do not have connections with the system to have technological access, but the floodgates of people who do have technological access can easily push those who do not aside.

And is it just the elderly who are the most at risk?  Absolutely not.  Individuals with disabilities such as Down Syndrome, Cerebral Palsy, Multiple Sclerosis, and other complex low-incidence disabilities have been forgotten and potentially discarded by this policy.  Left to wait for their age to come is fair, right?  If we are looking at science-driven policy - not at all.  For example, regardless of their age, people with Down Syndrome are over 3x more likely to die from COVID-19 than the general population.  Policymakers might reply that we have not seen people with Developmental Disabilities die at higher rates in Maine, but we haven’t been collecting data on anyone with Developmental Disabilities UNLESS they live in a congregate care setting. 

To be fair, people who live in congregate care settings have gotten the vaccine because the State did recognize the risks.  Unfortunately for people with disabilities, many have fought hard for the right to NOT live in a congregate care setting but to live in the community.  The people who have fought for freedom are being given an untenable choice of access to the community at significantly higher risk.  So, in response, they remain isolated, alone and without access to that very community.  This age-based vaccination plan ignores both their higher risk of death or serious injury from COVID-19 and their civil rights to the same access to the community they fought so dearly for.  This plan is akin to the analogy of the building with stairs - a person asks to have a ramp built so they may enter but the owner says no, they will have to wait - even though a ramp would allow access for everyone.  The 30-year-old with Down Syndrome now must wait until April 19 – but will they be at the same starting line for access as all the other 30-year-olds wanting to get the vaccine?  Will they have the same technological access?  Maybe not, just more stairs then - that individual with a disability joining the thousands of others sitting on the pavement staring at the stairs asking for a ramp.

Another group left behind with this policy are caregivers of children who are very medically compromised and as children, unable to get the vaccine.  Their parents live afraid daily that the pathogen could come home with them and, while the parent would likely survive, it is much less likely that their child would.

There is a famous moment in history called the 1889 Oklahoma Land Rush.  On one particular day, those who wished to vie for a stake at a homestead, 100 acres of land, could line up and race to their new claim.  The pictures that I have seen are of lines of men with cowboy hats on horses ready for the gunshot to start the race and give them a chance to be a landowner.  That was clearly fair policy as well, right?  Even Irish immigrants could join in and vie for their chance.  Well, it was fair if you owned a horse, knew how to ride well, could get to Oklahoma on the date, were a male eligible to own land, and were white.  If you were not in those categories, it was far from fair.

The State of Maine’s policy for COVID vaccine distribution is not that different from the Oklahoma Land Rush of 1889.  The people with connections, the will to get the vaccine, and strong technological access will be ready the moment their age group is allowed to register.  They will be staring at their computer screens en masse, waiting to click, just as those men on horses were waiting for the gunshot to charge to their safety and future.  When dealing with a deadly pandemic, I would have thought the distribution method of survival of the fittest would have been updated since 1889, but it doesn’t appear to be the case.  Perhaps Darwin’s theories do resonate in today’s public health policy in Maine? 

I know the signs of healthy child development.
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Maine Developmental Disabilities Council
225 Western Avenue, Suite 4
Augusta, ME 04330
Phones: 207-287-42131-800-244-3990