Light at the End of That West Virginia Tunnel

Light at the End of That West Virginia Tunnel

I’m lucky that my whole family received our first round of the Covid-19 vaccine a couple of weeks ago.  We got it through a little bit of luck.  Dave, my direct support professional, is considered in group 1A according to the DHHS guidelines (which are different from state to state and appear to be changing in my own state from week to week).  After waiting for two weeks from coming back from quarantining due to exposure with someone who tested positive, and two weeks after a negative test result, he decided to schedule an appointment with his doctor to receive the vaccine.  He was put on a waiting list there and decided to log onto the NC DHHS website, which led him to Forsyth County’s DHHS website.  There, he answered the required questions and was sent to another screen to schedule his appointment.  He chose a time later in the afternoon, and he immediately received a confirmation email and was set. 

Immediately after scheduling his appointment, he went back on to possibly schedule mine.  He marked me down as being in the health care field during the questionnaire, but not on the front line.  He enumerated all the disability boards that I’m a part of and answered all the health-related questions about me.  It once again brought up the scheduling screen, and he put me down for a time after his.  I immediately received a confirmation email and was set to receive my vaccine as well. 

Since my mother is a nurse,  and my stepfather, David, is over 65, they are higher up on the list.  Dave followed the same procedure he did for him and me and scheduled my mother and David’s vaccine as well and for the same time. 

Our vaccine location was at the local fairgrounds.  We pulled up and looked for the people who seemed to be official.  They told us we could sit, and they would be calling our group together.  We showed up a little earlier than anticipated, and they didn’t make us wait long at all.  They were very accommodating, they provided David with a wheelchair, and they gave us a place to sit.  When it was our time, we showed our IDs, had our temperatures taken, and filled out another questionnaire (basically the same one we filled out on the DHHS website).  They ushered us to another location, where they sat us all down and gave us our shot.  It took less than 1 minute to gather our information, get the shot and put a band-aid on.  We had to wait around 15 minutes in case any adverse reactions occurred.  They scheduled our next shot appointment and gave us a packet of information about the type of shot we received, which was the Moderna one. 

I wish I didn’t feel so lucky.  It shouldn’t be a matter of who has good fortune or not.  There should have been better planning on every level and more coordination between the Trump and Biden administrations to ensure the ball wasn’t and won’t be dropped.  As it stands now, the priority given towards the classification of who should be getting the vaccine first keeps changing.  When I took mine, I was higher on the list than I am now, which makes no sense.  People with disabilities are still amongst the higher-risk individuals.  It’s a strange situation.  If I had been in a congregate-care facility or group home, which I admit is risky, I would have been among one of the first people to receive the shot.  But just because I live in a house with my family, I was placed lower on the list.  If you think about it, the risk is not that much different because I still have people come into my house for necessary in-home care and have people coming into my home every day to help my family and me.

The state could have looked into the list of those who receive and those on the waiting list to receive home or community-based services and directly contacted us.  Or maybe have someone come by to administer the shot or check up on us to see if we wanted it.  There’s an excellent example of a similar solution working in West Virginia, in which they are using local pharmacies to provide the vaccine.  “West Virginia has fewer than 150 CVS and Walgreens pharmacies, and these are clustered in larger towns.” They do have “more than 250 independent, community-based pharmacy sites – in rural populations.”  The state partnered with the independent pharmacies, “which often carry the names of owners who were born and raised in that community, are people whom residents know, and who know the residents.”

Now, the Biden administration is trying to implement that model across the country.  It’s very troubling to me that people with disabilities seem to be lower on the list.  The trend seems to be going in opposition to my thinking and placing us further down in priority.   We’ve been fighting throughout the pandemic to justify our lives and convince others that we are still deserving of social equity. 

Early in the pandemic, many states got in trouble with the federal government because of how they prioritized medical treatments based on a judgment in the value of the patient’s worth and life expectancy.  I thought we were winning that argument, as the federal government told the states not to make those arbitrary judgments about a person’s worth.  But right now, it seems we have circled back around to the same thought process.  According to CNN recently, there was a report of a study that “more than 82% of American doctors say they believe patients with significant disabilities have a worse quality of life than people who don’t have disabilities…Those negative perceptions can have big impacts on the quality of care patients with disabilities receive.”

I’ll admit.  I do not have the master plan, nor do I claim that one’s person’s life is superior to another’s.  I sincerely hope to address the vaccine issue expeditiously and in a much more humane and socially just fashion.  It’s also worth it to address that I’m also aware of the vaccines’ efficacy rate and respect the fact that not everyone wants to get it.  Hopefully, we will achieve some form of herd immunity, get back to life in the “new normal,” and start complaining about new life issues. 

That’s how I roll… with a mask and hand sanitizer.