The U.S. Capitol. (Drew Angerer/Getty Images)
By Kimberly Crawley
I’m a single mom.
My son Isaac spent 11 of his first 13 months in a hospital ICU. By his first birthday, he had undergone more than a dozen surgeries that aimed to give him a functioning esophagus. At just 14 months old, he had reached his $2 million lifetime max in health benefits.
Fortunately, I was able to switch him over to my insurance. And after the Affordable Care Act passed, we no longer faced lifetime health insurance caps.
But I still worry about Isaac’s health care, although for a very different reason: From one day to the next, I never know whether a trained home care worker will be available to care for him at night.
Across the country, there’s a shortage of home care workers. Salaries are too low for these caregivers, and they rarely are offered sick leave or vacation or health benefits.
Until recently, Isaac used a tracheostomy tube to breathe. Just this month, we received some welcome news from his doctor: After 12 long years, my son would no longer need a breathing tube. I’ve never been happier, and neither has Isaac.
Isaac still uses a feeding tube, however. And if his tracheostomy were to become blocked or dislodged, his life could be at risk. So a health nurse staffs our home 16 hours each week, to help keep him healthy and safe.
But that’s only if we can actually find someone. Every Friday, I call a nursing agency to see if someone is available to care for Isaac during the following week. Too often, their answer is no.
A welcome change could be on the horizon for caregivers and those of us who depend on them. The Biden administration wants to improve and expand home- and community-based services for older Americans and people with disabilities by investing $400 billion in the home care industry.
This funding could help ensure more people like my son get access to the care they need at home. Families struggled to find caregivers before the pandemic, and it’s even more challenging now.
Caregivers are an essential part of our lives but every day across this country, families like mine are left to shoulder the responsibility of caring for a loved one when we can’t find or afford the help we need.
If not for home care workers, I couldn’t work as a high school math teacher because it would be impossible to care for Isaac all night and to hold down my job during the day. And if I couldn’t work, my family — Isaac, his younger brother and I — would lose everything. Home care workers literally allow me to keep a roof over our heads.—
If caregivers were paid more, if they had benefits like affordable health care and sick time, they might choose to remain in the profession longer. If there were better job training options, they might find a path to greater fulfillment at work and possibilities for career advancement. Sadly, that’s not the case. Turnover is high, and the demand for their work far exceeds their numbers.
Isaac is now finishing the fifth grade. Over the course of his 12 years, he has undergone over 30 surgeries — more than two per year, on average. But he’s a happy kid who enjoys playing outside with his neighborhood friends and riding his bike with his brother.
We need to improve and strengthen the systems of care within the home to support families like mine. We work hard and we want to see our children thrive at school and in our communities.
That starts with better wages, training, and benefits for the caregivers trusted to care for children like mine. President Biden’s jobs plan is designed to do just that. It’s time for Congress to help the people who support my son to lead a normal life and allow me to work every day.
Kimberly Crawley and her son Isaac are members of Little Lobbyists, a non-partisan, non-profit group advocating on behalf of children with disabilities and complex medical needs. They live in Ashburn.
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