Like so many other people, I’ve had my life shaken up by COVID-19. It’s been an adjustment, but one I am glad to make.
In recent weeks, I have been working up to seven days a week, by choice, as a direct care worker. This includes FaceTime sessions with some families and in-person visits with others. I work for an international nonprofit group with operations in Madison, Wisconsin, and have private arrangements with other clients.
There needs to be a greater measure of public support for families who have additional needs during times of crisis.
I love the work I do and the people I serve — in my case, children with autism spectrum disorders and their guardians. I know the same is true for other direct care workers, who numbered more than two million nationally in a 2018 count. They work with people who are elderly, living with disabilities, or have chronic conditions.
The urgency of the moment has magnified the importance of this work. For many families across America, the outbreak of COVID-19 has created a heightened level of disruption and stress. Direct care workers have become a lifeline.
One parent told me that the only time she’s able to sleep is when I’m with her daughter. Sometimes, she also uses this time to do work remotely.
Her daughter loves going outdoors and visiting new places, which helps her release energy and manage her temper. The decrease in these activities caused by the pandemic as well as changes to her schedule has made her extremely volatile, prone to somewhat violent outbursts and profanity. Given her age and height, it’s not a problem that can be ignored.
Another parent recently pulled me aside and murmured, “You have no idea how helpful it is to us that you’re here right now.”
His son is nonverbal, and I interpret his needs through various cues and my knowledge of his daily schedule. He needs a plethora of medications and very specific foods; behaviors as innocuous as a phone ringing can upset him for long periods of time.
Every parent I work for is trying to provide the best care they can for their child during these times, and it’s my job to help. But the COVID-19 pandemic is making a difficult situation even more challenging.
Families who once sent their children with developmental disabilities to schools or special education programs no longer can. As parents and children alike do their part to slow down transmission rates, many of them are struggling.
There needs to be a greater measure of public support for families who have additional needs during times of crisis. I know the families I work with; they will stop at nothing to get proper care for their children, and sacrifice everything they can to make that happen. But eventually it boils down to hours in a day, and bills to pay.
We need to significantly hike the poverty-level wages that most direct care providers are paid, which would help to reduce the industry’s high turnover rate, keeping experienced workers on board. We must also do more to create a system where families aren’t left behind during times of crisis, where guardians have access to direct care workers and financial support should they have to take time off themselves to provide care during times of need.
For now though, I will work tomorrow, and every day after that, until my families tell me they have it covered.