Published: 10/3/2021 8:00:05 AM
People say that raising a child takes a village. Well, my daughter Mya needs a village, but we can’t find one. I have been trying to arrange home care for her for years, but there is no sign that she will receive care any time soon.
Mya has severe autism. At 18 years of age, she requires 24/7 care. She started getting seizures a few years ago and can never be left alone. She needs help with most things, from using the bathroom to feeding herself.
I adopted Mya when she was two years old. The social workers caring for her at the time told me that she would never walk and would be in a long-term care facility by the time she was seven years old. I knew that taking in Mya as a single parent would be a challenge, but when I met her and saw how much her beautiful, beaming smile lit up her face, I felt an obligation to make sure she got the best care possible.
Mya has far exceeded their predictions. Not only can she walk, but she attends school five days a week. Mya has difficulty completing a sentence, but she loves to communicate with music. She can sing all the lyrics to Bryan Adams’s old hit song, Summer of ‘69.
I love caring for Mya, but being her primary caregiver 24 hours a day takes its toll. Respite care from home caregivers would allow me to take a small break, if only for a few hours a week. Mya has been on the list to receive in-home care for years and our local agency has even approved us for 10 hours of care a week. But Mya would need someone on a consistent, reliable basis, without interruption to her routine. And there are simply not enough workers to make that happen. The average home care worker in this country makes just $17,200 a year. That’s not enough to live on, so workers are leaving the profession.
A solution to this problem is being discussed in Washington. President Biden has a proposed care plan that would help expand access to home care nationwide. This is a part of his Build Back Better plan, and it would do just that, invest in better training, pay and benefits for caregivers to make the industry a sustainable career path for care workers. This would create thousands of jobs, enable mothers to get their jobs back on track and save taxpayer money in the long run.
I lost my job in print design right before the COVID lockdown. I am lucky to have a dedicated husband who works overtime to support us, but we do miss the income and benefits I brought in through my last job.
I’ve been trying to continue my career, but my options have been limited. I had to spend most of last year trying to help Mya to learn remotely. Even now that her school is in-person again, I still have to be home when she gets back in the early afternoon. Several times already this year, COVID outbreaks have sent Mya home for weeks at a time.
My story is similar to that of millions of women in this country whose careers have been cut short by the call to care for loved ones with special medical needs. I know of many mothers in my community who have been unable to access home care or daycare services for their children. I’ve been doing what I can by offering to care for their kids while they work.
Over the years, I’ve spent hundreds of hours filling out paperwork just to keep Mya on the waitlist so that she has a chance at getting in-home care. Biden’s care plan would be a lifeline for families like mine, and Congress needs to pass it. If they do, I’d be able to take a break from being Mya’s full-time caregiver and could possibly even re-enter the workforce.
Until our system of care is reformed, my daughter and many children like her will continue to look for that proverbial village, and continue to go without care.
(Sherry Pratt lives in Concord with her daughter and husband.)
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