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Opinion: Home care workers deserve higher pay 

Jeneva Stone is a member of Caring Across Maryland, a coalition of patients, loved ones and care workers advocating for quality long-term care programs and investment in the care workforce. She and her son, Rob, are also members of several other disability rights and health care advocacy groups, including Little Lobbyists, the Self-Directed Advocacy Network of Maryland, and others. Photo by Rah Foard, courtesy of Jeneva Stone.

By Jeneva Stone

The writer is a member of Caring Across Maryland, a coalition of patients, loved ones and care workers advocating for quality long-term care programs and investment in the care workforce.

My son Rob Stone, age 25, an artist and advocate, has disabilities and complex medical needs. Rob takes classes, plays baseball, and enjoys the occasional glass of whiskey. He lives at home, where he belongs, with the help of Medicaid’s Home and Community-Based Services. Receiving care at home allows him to stay with his family and remain part of his community. He’s part of a growing segment of our disability and aging population who wish to receive care at home.

But the future for people like Rob — and their families — is jeopardized by the home care worker staffing crisis. Low pay and lack of benefits are causing many workers to leave the caregiving profession to take soulless jobs at warehouses and fast-food restaurants. Many love the caregiving profession but feel like they have no other choice because they cannot support their families with their wages. This exodus hurts the quality of care for Rob and others and puts enormous pressure on families like mine.

As a caregiver myself, I understand all too well the economic pressures that Maryland’s home

care workforce faces. I also understand feeling demeaned and undervalued, because the State of Maryland has treated my unpaid contributions to Rob’s care with disrespect. It isn’t just the pandemic; this situation has gone on for decades.

Fifteen years ago, I tried to re-enter the workforce after years as Rob’s primary caregiver. For several years, I worked part-time, but the residential service agency we hired couldn’t keep staff in place. They paid only $10-11 per hour to care for a boy with mobility, communication, and health needs. At one point the turnover rate was every two weeks, and we had long gaps without workers.

It was nightmarish for me to try to work while dealing with the constant upheaval in Rob’s care. I changed the days I came into the office or worked from home, but there was no easy solution. Eventually, my job was cut, and my boss said it was because it was clear I couldn’t transition to full-time work. And he was right. I couldn’t be reliable because the workforce that supported me was so unreliable.

This is the domino effect I’ve heard from other women, both family caregivers and home care workers, who have testified on home care issues during this legislative session in Annapolis. We women are expected to do it all and not complain that we can’t make ends meet, let alone worry about our own health. When home care workers struggle to cobble together a living, family members like me who rely on them also struggle to cobble together a living. My family has lost nearly a million dollars in income over the 25 years of Rob’s life.

The General Assembly is currently considering several bills to raise wages for home care and nursing home workers by investing in our long-term care system through higher Medicaid reimbursement rates and ensuring that a fair portion goes directly to direct care worker wages.

Raising caregiver wages is absolutely necessary to fix the staffing crisis. Low wages trap home care workers, who are mostly women of color, in poverty.

Retaining home care workers will enable our disabled and elderly loved ones to be cared for in their homes. Raising wages will also reduce the turnover in nursing homes that impacts quality of care and threatens the lives of our seniors.

When I hear legislators and state regulators dismiss these bills, I hear only talk about costs and reluctance to collect much needed data on home care agencies. If we improve home care services, our entire economy benefits.

I’ve been living with a broken home care system in Maryland for over two decades. In my experience, home care has always been an afterthought in our state. It’s time that changed.

Will the legislature ever consider the fact that my life, the lives of the home care workers who care for Rob, and Rob’s own life have value? Or will the legislature wait until they or their loved one experiences their health deteriorating enough to have to rely on a care team to finally make a change? And by then, will it be too late? Care simply cannot wait.


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Opinion: Home care workers deserve higher pay