For the past 21 years, I have spent most of my days caring for my son, who has autism. He has obsessive-compulsive disorder and is largely non-verbal. After washing and rewashing your hands countless times, resisting getting out of the shower, putting on and taking off your socks, getting it out the door each morning takes two to three hours.
If you’ve ever had a baby, you’ll remember the lack of sleep, the diapers, and the battles of will. Many parents of children with special needs continue in that mode, forever. I spend hours every day being their “social worker”: advocating, organizing and scheduling therapy and education, hanging up the phone for 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 nursing assistant care. I became his “CNA parent” to him. The payment was not enough to cover our bills, but I was grateful; At least I’d have health insurance again.
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For a long time I didn’t even realize I was a social worker; Now I avoid the more common term, “caretaker.” This job, like motherhood, literally supports all of society and makes all other jobs possible, but it is largely unseen and vastly undervalued. Every day, caregivers do the essential work that allows millions of people with disabilities and older adults to live in safety and dignity.
It is time for a major change in the way we respect, value, support and compensate those who provide care in our society.
Care workers are mostly women, mostly women of color, with a long history of being ignored. This stems directly from systemic sexism and racism. The line of thought is that women have always done this work “for free” and slaves did it “for free”, so why should we pay them properly now? Care work is seen as something that women do for free in their supposed role as “givers” in society and the family.
As the parent of a child who requires 24-hour care, I know firsthand how physically, emotionally, and mentally demanding care work is. We often deal with behavior and aggression issues that make even the most routine activity a struggle. Without proper mental health care or respite, the cost of health care workers is real.
I am also a careful consumer. When my son was first diagnosed, despite my advantages as an older, white, English-speaking, overeducated parent, navigating the system seemed impossible without support. Recently, it took me eight months to find a dentist who could give him general anesthesia to fill his cavities. To this day, I often struggle to find services from all types of caregivers because they are understaffed and have months-long waiting lists.
I am far from alone. in colorado, an estimated 12,000 adults with disabilities have caregivers for parents age 60 and older. There have always been parents who care for their disabled children, but we have never seriously considered a political response to what happens to these adult children when their parents are away.
A perfect storm is coming. As the percentage of people with disabilities keep growing — and the baby boomer generation is aging — demand is skyrocketing. Meanwhile, caregivers are leaving the profession en masse. The industry struggles to recruit and retain workerscreating a crisis level worker shortage.
Without bold action and great 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 say in the redesign of the system. Caregivers know what needs to change to provide jobs that prevent burnout: adequate pay, benefits, regular shifts, rest, mental health days, and salaried positions.
The reality is that each person, at some point in their life, will provide or need care. It is time we value care work as the essential work that it is.
Carrie Sonneborn of Lakewood is a leader and homestay provider with Colorado care workers unite.
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