By JESSICA BENHAM AND CHRIS DELUZIO
Published in the Pittsburgh Post-Gazette on January 13, 2022
Pennsylvania families are suffering because our government is failing people with disabilities and the loved ones who care for them. People can’t find caregivers, families are filling the void at great personal cost and care workers can’t get by on lousy pay. This is a disaster not only for those who need care and aren’t getting it, but also for their families and the caregivers who do this necessary and noble work while struggling to get by. It’s a problem that Harrisburg and Washington cannot keep ignoring.
This is not just a Republican or Democratic problem, nor is it just an urban, rural or suburban one: People all over the Commonwealth are in crisis. And the COVID-19 pandemic has exacerbated the shortage of the essential workers providing care to people with disabilities. Many have waited for years for state funding for home care services, yet they may find no caregiver available after that long wait. And with pay for workers across our economy finally rising after years of skyrocketing inequality, now is the time for more public investment in the low-wage care economy.
The essential workers who care for people with disabilities often help with many core, everyday tasks: eating, socializing, hygiene. Their work is difficult, stressful and demanding. Yet their pay does not reflect those costs or the importance of the work to those they serve: The typical home care worker earns barely more than $18,000 a year. The Commonwealth has stubbornly kept Medicaid reimbursement rates low, and workers rarely have a meaningful chance to form or join a union.
It is no surprise that there is a shortage of these workers. As of this fall, according to a Pennsylvania official, there were more than 12,000 people with disabilities on state waitlists for Medicaid waiver funding for care. Even if someone makes it off the multi-year waitlist, providers may not have any care workers to offer. This dysfunction has left families scrambling to find care, with many being forced to leave the workforce to provide it themselves.
In Harrisburg, the majority party has chosen to lock away federal American Rescue Plan funding in a rainy day fund instead of using the money to benefit those who need it most today. Some of those federal dollars could have been used to fund additional waiver slots and increase wages for care workers, allowing individuals with disabilities to receive care in home- and community-based settings. In addition to the many other benefits of receiving care outside of an institutional setting, home care also has the benefit of reducing the spread of COVID-19 that we saw in state centers in Pennsylvania.
It doesn’t have to be this way. Our state government could fight for the civil rights of people with disabilities and for the rights of those who care for them. State House Democrats are fighting to pass legislation that increases the wages of care workers and to direct additional funding to our Medicaid waiver programs, decreasing (and eventually eliminating) lengthy waiting lists.
And in Washington, President Biden and Congressional Democrats are fighting hard to deliver robust funding to tackle the care crisis. The Build Back Better plan, which the House passed in November, includes $150 billion in care funding, the largest investment in the care economy in decades. These funds, which would improve Medicaid coverage for both community- and home-based care, would help to shorten waitlists. They would also raise pay for caregivers, helping those workers to earn a decent living and thus enticing more people to fill these needed jobs.
Yet corporate-backed politicians have thus far blocked people from getting the federal relief they so desperately need. But we think our government and economy ought to offer folks the basic dignity that quality care can provide — regardless of how rich you are.
Our society should not turn a blind eye to this crisis. The problems in the care economy are not going away. If anything, they are going to get worse as Pennsylvanians age and will increasingly need the support of care workers. We’ll be fighting to make sure our government does right by people with disabilities, families and care workers alike.
Rep. Jessica Benham is a Democrat who represents Allegheny County (36th District) in the Pennsylvania House of Representatives; Chris Deluzio is a Democratic candidate for the U.S. Congress in Pennsylvania’s 17th district.