For the past 21 years, I have spent most of my day caring for my autistic son. He has obsessive-compulsive disorder and is primarily non-verbal. After washing and rewashing my hands many times, I resist getting out of the shower, take off my socks, and it takes a couple of hours to get out of the door every morning.
If you have a baby, you will remember sleep deprivation, diapers, and the fight of will. Many parents of children with special needs will continue to be in that mode forever. I spend hours every day as his “caseworker”. That is, advocating, organizing, and scheduling treatments and school education, and calling for services. It’s a full-time job.
With his diagnosis, it was difficult to maintain my professional career and my income plummeted. When my son was 5 years old, he was qualified for Certified Nursing Assistant Care. I became his “parent CNA”. The salary wasn’t enough to cover our bill, but I was grateful. At least I will get health insurance again.
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For a long time I wasn’t even aware that I was a certified care worker. I am now avoiding the more general term “caregiver”. This work, like motherhood, literally supports society as a whole and enables all other work, but it is almost invisible and highly underestimated. Every day, certified care workers do important work to ensure that millions of people with disabilities and the elderly can live safely and with dignity.
Now is the time to make a big difference in the way we respect, value, support and compensate the people who provide care in our society.
Certified care workers are mostly women, mostly colored women, and have a long history of being overlooked. This is directly due to systemic and racist discrimination. The idea is that women always do this job “free” and slaves do this job “free”, but why do we need to pay properly now? Care work is considered to be done free of charge, as women are presumed to play a “donor” role in society and their families.
As a parent of a child who needs 24-hour care, I know first-hand how demanding care work is physically, mentally and mentally. We often deal with behavioral problems and aggression that struggle with the most routine activities. Without proper mental health care and rest, the health sacrifice of certified workers is a reality.
I am also a care consumer. Navigating the system is impossible without support, despite my advantages of being an older parent, Caucasian, English-speaking, and highly educated when my son was first diagnosed I felt it. Recently, it took me eight months to find a dentist who could do general anesthesia to fill the cavities. To date, I often fight to find services from care workers of all kinds. They are understaffed and have a waiting list for several months.
I’m not alone. In Colorado, an estimated 12,000 adults with disabilities have certified care workers for parents over the age of 60. There are always parents who take care of children with disabilities, but parents have never seriously considered policy responses to what happens to these adult children. It’s gone.
The perfect storm is brewed. Demand is skyrocketing as the proportion of people with disabilities continues to grow and the baby boomers grow older. Meanwhile, many certified care workers have left their profession. The industry is struggling to hire and retain workers, creating a crisis-level worker shortage.
Without bold action and large investments, this downward spiral will continue. The conditions that cause burnout and workers to leave the field need to be changed. To do so, certified care workers need to have a say and decision-making power in system redesign. Certified care workers know what needs to be changed to provide a job to avoid burnout: proper wages, profits, regular shifts, rest, mental health days, and salary positions.
In reality, everyone provides or needs care at some point in their lives. Now is the time to value care work as an essential job.
Carrie Sonneborn of Lakewood is a host home provider and Colorado care workers unite..
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