For the last 21 years, I have spent the majority of my days providing care for my son, who has autism. He has obsessive-compulsive disorder and is largely nonverbal. After washing and rewashing his hands countless times, resisting getting out of the shower, taking socks on and off, getting him out the door each morning takes two to three hours.
If you’ve ever had an infant, you’ll recall the sleep deprivation, diapers and battles of will. Many parents of children with special needs continue in that mode, forever. I spend hours each day being his “case worker”: advocating, organizing and scheduling therapies and schooling, hanging on the phone in search of services. It’s a full-time job.
With his diagnosis, my professional career was difficult to maintain and my income plummeted. When my son was 5 years old, he qualified for certified nurse assistant care. I became his “CNA parent.” The pay wasn’t enough to cover our bills but I felt grateful; at least I’d have health insurance again.
For a long time I didn’t even realize that I was a care worker; I now avoid the more common term, “caregiver.” This work, like motherhood, literally underpins all of society and makes all other work possible, yet is largely unseen and vastly undervalued. Every single day, care workers do the essential work that allows millions of people with disabilities and older adults to live safely and with dignity.
It is time for a major shift in how we respect, value, support and compensate those providing care in our society.
Care workers are largely women—mostly women of color—with a long history of being overlooked. This stems directly from systemic sexism and racism. The line of thinking goes, women have always done this work “for free” and enslaved people did this work “for free,” so why should we pay them adequately now? Care work is seen as something women do for free in their presumed role of “givers” in society and the family.
As the parent of a child who requires round-the-clock care, I know firsthand how physically, emotionally and mentally demanding care work is. We often deal with behavioral issues and aggression that makes the most routine activity a struggle. Without proper mental health care or respite, the toll on care workers’ health is real.
I am also a care consumer. When my son was first diagnosed, despite my advantages of being an older parent, white, English-speaking and overeducated, navigating the system felt impossible without support. Recently, it took me eight months to find a dentist who could provide general anesthesia in order to fill his cavities. To this day, I often battle to find services from all kinds of care workers because they are understaffed, with monthslong waiting lists.
I’m far from alone. In Colorado, an estimated 12,000 adults with disabilities have parent care workers over the age of 60. There have always been parents caring for their disabled children, but we’ve never seriously considered a policy response to what happens to these adult children when their parents are gone.
A perfect storm is brewing. As the percent of people with disabilities continue to grow — and the baby boomer generation ages — demand is skyrocketing. Meanwhile, care workers are leaving the profession in droves. The industry struggles to recruit and retain workerscreating a crisis-level worker shortage.
Without bold action and major investment, this downward spiral will continue. We have to change the conditions that lead to burnout and workers leaving the field. To do that, care workers must have a voice and decision-making power in redesigning the system. Care workers know what needs to change to provide jobs that avoid burnout: adequate pay, benefits, regular shifts, respite, mental health days, and salaried positions.
The reality is every person, at some point in their life, will either provide care or need care. It is time we value care work like the essential work it is.
Carrie Sonneborn, of Lakewood, is a host home provider and leader with Colorado Care Workers Unite.
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