Yesterday morning I got a call from my son’s Endocrinologist’s office. The blood work that I had postponed due to stay at home orders nearly a month ago still hasn’t been done, and with the recent changes in his thyroid medication, the blood tests are necessary follow up. I spent the day making phone calls and seeking creative solutions.
My son is one of “the vulnerable” that is in need of long-term protection from the Coronavirus. Though reports are few, it appears that people with Down syndrome are more susceptible to severe effects from the virus, and with his array of complex medical conditions he is at high risk. My biggest responsibility is keeping my family safe from this illness, and until I hear otherwise, my method of doing so will be staying at home with them.
Yesterday’s challenge was one of many that will arise as we balance maintaining routine medical care while avoiding outside contact to the greatest extent possible. This episode came with a relatively easy and happy ending in which his blood tests will be obtained by a home health care agency. However, there are many other situations that take more than just a day or two of making phone calls to resolve.
“Often, too often, people with disabilities are an afterthought, even under ordinary circumstances.”
I’ve become accustomed to life with many uphill battles, and I take them on willingly in order to enhance the lives of my children to the greatest extent possible. I also recognize that the world won’t stop for people with disabilities and medical conditions, nor do I expect it to. But as we move forward I’m leery. Often, too often, people with disabilities are an afterthought, even under ordinary circumstances. I’m concerned that the effort to move forward and return to normal and just “protect the vulnerable” will end up being a situation in which the people most susceptible to serious complications of Covid-19 are expected to stay home as long as it takes. While I’m committed to doing whatever it takes to keep my children safe, I’m equally committed to fighting for the help we will need to manage a long-term shelter in place scenario.
While family and friends are the first lines of support for many who need to use maximum precaution for a prolonged duration, there must also be an enhanced social safety net in place as the months drag on. In addition to the challenges that this population normally faces, the need for a prolonged shelter in place will stretch resources to their limits and place a population that already has many vulnerable members at increased risk of abuse, neglect, food scarcity, mental health crises, medical complications, educational breakdown and more.
As we grapple with the many challenges of managing the Coronavirus pandemic, I ask that you join me in contacting your politicians on a local, state and national level, as well as community agencies, medical systems and more in order to create a safety net of support for people most at risk with Covid-19.
Alethea Mshar is a Special Needs Mom and Blogger.
Read her blog, Ben’s Writing, Running Mom
Follow her on Facebook
