I was 18 years old, driving home from Toronto with friends I met playing college soccer. It was a rainy morning. We hydroplaned into a concrete highway barrier. One of my teammates died, and three others were injured. I was left paralyzed from the chest down.
I had just started attending college and had only a taste of the independence I had wanted for so long. Suddenly, I was more dependent than ever on the people around me.
That was 21 years ago. I still rely on a wheelchair, and I’ve lost most of my hand function and fine motor skills. I feel fortunate every day that I have access to quality, reliable home-based health care. Because of my caregiving team, I’m able to live the life today that I imagined before my accident.
I’m married. I have a son. I have a house and two dogs. I’m able to work full time, provide health insurance for my family and plan for my future by contributing to a 401(k). I was also able to purchase a van that I can drive from my wheelchair. I am able to be the mom I always wanted to be to my 8-year-old son.
Each morning, a home care worker helps me to transfer out of bed, take a shower, use the bathroom and get dressed. She then helps me get into my wheelchair for the day. My caregiver also helps with laundry, dishes and light cleaning. If I have any appointments that require that I get out of my chair, she accompanies me. At the end of each day, I need assistance getting into bed and getting comfortable for the night. All of this accounts for many hours of care each day. There’s no question that without this help, I’d end up without a job and in a facility.
Maine has a significant shortage of caregivers, so people with disabilities and seniors often find that they cannot access the care they need. In addition, the industry is underfunded and understaffed. The Biden administration’s American Jobs Plan would invest $400 billion in the caregiving industry to increase the pay, benefits and training of home care workers.
It would also ensure that every caregiver has the right to choose to join a union to have a voice in their profession. This week, Biden met again with Sen. Shelley Moore Capito and other Republican leaders, who refuse to support a bill that funds the care economy. They claim it strays from what they consider “traditional” infrastructure.
However, caregivers provide a foundation for this country. When home care workers have economic stability, people with disabilities do, too. Without my caregivers, I would face financial devastation and would have to sell my completely wheelchair-accessible home. And I would put stress on every single relationship in my life by relying on those closest to me for daily care and support — although at the same time my needs would never be fully met.
I’m able to employ caregivers who I know can meet my needs in my home. I’ve always enjoyed their company and had great relationships with them.
I urge Sens. Angus King and Susan Collins to listen to people like me with disabilities who support this plan. We are the best experts on what we need to be productive citizens within our communities, families and our workplaces. Investing in the caregiving industry keeps those of us in the disability community from having to give up our independence. The American Jobs Plan will invest in the care that Mainers need right now.
Because of access to skilled, capable in-home care, a woman who decades ago lost the use of half her body can drive her kid to soccer practice. Even when lives are upended, like mine was after my accident all those years ago, home care workers help make the seemingly impossible, possible.
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