PATIENT PERSPECTIVE
The Impact of COVID on People with Disabilities A need for proactive planning BY JOAN WILSHIRE, MPA
P
eople with disabilities, or who have chronic medical conditions, or both, have faced increased and not surprisingly undocumented hardships during the COVID pandemic. Fear and uncertainty are two words that may best describe the feelings it has caused in many people among the disability community. Even though we see the death rates going down and mask mandates being eliminated by most states, the pandemic has not ended yet. The fear and uncertainty leads to further isolation for many in this community. This continued isolation may result in people with disabilities becoming more disabled. In all honesty, a secret killer of this pandemic could well be the isolation of people with disabilities.
The fear is real Even with vaccinations, booster shots and new antivirals coming out there is still much fear within the disability community. It’s an invisible threat, since we don’t know who is infected or who is contagious. We don’t know how the COVID infection will affect us, or how long it will last. People with disabilities have been hiding for the last two years; it’s like playing a game of hide and seek with the coronavirus. As the isolation continues, it is not surprising for
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MAY 2022 MINNESOTA PHYSICIAN
people with disabilities and/or with chronic medical conditions to fear being left behind. Historically, people with disabilities have been left behind during natural disasters like floods, tornadoes, hurricanes and pandemics. They have come to expect it. A prime example of being left behind is the vaccination priority guideline developed last year. People with disabilities who have chronic medical conditions were not necessarily high on the list because priorities were based on age. The vaccination priorities seemed to say that people with disabilities were an afterthought and nobody ever wants to be an afterthought. You can really see what it is like to be an afterthought when there’s been little consideration for you, there’s no protocol for you and no way for you to have a voice in the process either. I was not eligible to get my first vaccination shot until April 1. In the room where I sat waiting for the injection, several people were using oxygen, some were in power wheelchairs and others were using canes or walkers. Why weren’t all of us on the priority list? At the beginning of the pandemic, people with disabilities worried “would my life as a person with a disability be deemed valuable enough to live” if there is a shortage of resources? Some people with disabilities are dependent on ventilators to live. If ventilators are scarce, are we going to have to give up a ventilator to provide for COVID ICUs? People with disabilities and chronic medical conditions, are affected in many additional ways, such as restricted breathing and speech, when complying with mask requirements. Virtual doctor visits might not be appropriate but health care centers and clinics were closed to in-person visits, accessible transportation was limited by driver shortages, and many COVID testing sites had limited accessibility.
Proactive planning The biggest issue I’ve seen during the pandemic is the lack of proactive planning by the medical community for people with disabilities. People with disabilities who also have chronic medical conditions and test positive for COVID, need to have a proactive plan set up by their physicians because they are at higher risk. Having a plan gives the person some sense of control and protection if diagnosed with COVID. I was fortunate in that my infectious disease physician created a plan for me around what to do if I were to test positive for COVID. I immediately will contact her office to have a prescription for one of the antiviral medications sent to me. The plan gives me a little peace of mind in that at least there has been a discussion of what I need to do in this scenario. Trust me, when I enter a hospital with my variety of medical issues I present a challenge to figure out what should be done immediately. Another big concern is not being allowed to have anyone with me to advocate for my treatment plan. The physician’s plan should be available and implemented immediately. I have been living with MS for many decades. I always have been careful during flu season to avoid the latest influenza and I have been pretty lucky avoiding COVID. I order my groceries, clothes and other household necessities on line. I have had virtual doctor appointments
