Home care being reframed as infrastructure is the most revolutionary development in personal assistance since ADAPT bullied the bully Newt Gingrich, then speaker of the U.S. House, into supporting Our Homes Not Nursing Homes back in ’96.

I was with ADAPT that day. We’d hectored Gingrich from Atlanta to Washington, D.C., until he agreed in writing, on a cocktail napkin, to the outline of what eventually became a slate of policy changes over the next decade. This was two years before the landmark 1999 Olmstead Supreme Court decision that found people with disabilities have a right to live in the least restrictive settings — again, Our Homes Not Nursing Homes — and almost a decade before Money Follows the Person became a thing.

Since then, the disability community has put its collective shoulder to the policy wheel to redirect funds that stream to nursing facilities and other institutions into people’s own homes instead. Most states have Medicaid waivers now that keep that fund diversion flowing.

Our community has been so successful that home care is in high demand across our nation. Unfortunately, that demand can’t be met the way those programs are structured right now. People are reporting terrible problems finding workers to fill their hours, for one thing.

It’s the Economy, Sweetheart

T.K. Small is director of policy at Concepts of Independence, Inc. He’s also a wheelchair user with spinal muscular atrophy who uses personal assistance and has put thought into the worker shortage. “It’s partly the added unemployment benefits and other pandemic relief things,” he says. “Here in New York City, they suspended all landlord-tenant proceedings. With the added unemployment and not being under the gun to pay your rent, you can probably survive.”

Also, New York State tweaked its minimum wage to help the lowest earners, which is great but may have suppressed the labor market for home care positions. “Before that rule change, home care work was paid at roughly 150% of the minimum wage rate and at that rate we were either equal to or above fast-food workers,” says Small. “Then they put in the new rule the following year to change the rate of home care workers but not all at once. It’s spread out over a three-year period. Now my workers start at $16 during the week but they’re paid about the same rate as fast-food workers, so basically it’s a minimum wage job. There are lots of employers who pay more than that — at Amazon, very few jobs start out at $16 in New York City — so it’s rough.”

That hourly wage wildly fluctuates depending upon the region. In Texas, the average rate is $10.45 and in Pennsylvania, it’s $12.75, but this difference usually also reflects cost of living and other factors. Nationally the average hourly rate for a home care worker is $13.02, which is comparable to many other entry-level jobs and certainly explains the massive churn in the industry — the 2019 turnover rate was 64%. Who can afford to stay at an entry-level wage their entire career? 

Often participants supplement their workers’ salaries. “The Consumer Directed Personal Assistance Association of New York State did a survey in 2020 and 26% of folks are adding to the wages even though that’s technically illegal,” says Small. “But the vast majority of people who rely on home-based care and services can’t supplement the wages.”

Also, frets Small, what happens if the programs keep expanding? “It feels like we’re putting more and more people into the boat and at some point, the boat may sink. I don’t know that I completely trust the politicians to make the right decision about who gets put into the boat,” he says. “Is it possible that the boat may go down? Unless you rebuild the boat immediately on the ocean they have to be very careful about how they do that.”

Politicians of all stripes are famous for not being careful. But something must change or the progress we’ve made in people leaving nursing homes for their own homes may be undone.

Pandemic-Driven Changes

The pandemic taught us that as a nation we’re collectively a bunch of classist fools since it took not knowing if we’d be able to buy groceries to realize that grocery store workers are essential to our food supply. And the list of who’s essential most definitely includes those who provide personal assistance for people with disabilities. America sees that now. Without home care, jobs are lost and unbearable pressure may be put on families. But we’ve never paid much attention as a society, any more than we might the person bagging our groceries.

That may be about to change as President Biden is using his podium to educate America on the importance of understanding home care as part of what he calls “human infrastructure.”

“The American Jobs Plan is going to help in big ways,” said Biden during a March 31 speech on infrastructure. “It’s going to extend access to quality, affordable home or community-based care. … Think of home care workers going into homes of seniors and people with disabilities, cooking meals, helping them get around their homes and helping them be able to live more independently.”

Biden needs 60 votes for his plan to pass and avoid a filibuster. Although Republican senators are balking at expanding “human infrastructure” — home care, childcare, Medicare expansion, etc. — it looks like enough of them will back brick-and-mortar infrastructure for that part to pass on its own. Rather than abandon human infrastructure in return for roads and bridges, Biden plans to package it into a filibuster-proof budget reconciliation bill.

Let’s hope it goes according to plan. Even if it doesn’t, Biden’s reframing home care as infrastructure — as crucial to our national well-being as bridges and roads — has changed the conversation. The question is no longer, “How can we get policymakers to recognize the importance of home care?” Now it’s, “How can we get policymakers to pony up enough funds to keep our home care system afloat and make it better?”

Listen to how advocates are starting to talk:

“Right now, we don’t have the infrastructure for aging services that we need, and the systems that we do have are crumbling,” said Katie Smith Sloan, president and CEO of LeadingAge, during Biden’s news conference. “The COVID-19 pandemic made clear the tragic human consequences that can happen when our systems are weak from significant shortages of staff to provide care to chronic underfunding of all kinds of services. But make no mistake, the need to renew and revitalize our aging services infrastructure existed even before the horrific last year.”

And Rep. Steve Horford used the language of infrastructure in an article he wrote for The Hill to make the case for inclusion of home care in Biden’s job bill:

“This isn’t just a family or private issue — our lack of care infrastructure hurts our entire economy,” he wrote. “Investing in home care workers and our care infrastructure is critical to recovering from the COVID-19 pandemic and charting a safer and brighter future for our families. By 2028, our country will need to fill 4.7 million home care jobs to meet rising demand, but we cannot do that sustainably or ethically when one in six home care workers live in poverty. Investing in those who care for us is a huge step to create an inclusive, equitable economy that works for everyone — where all working people have a fair shot at opportunity, with no exceptions.”

We’re Going to Win

We no longer have to prove the merits of Our Homes Not Nursing Homes, like we did in the ’90s. Back then we protested for Medicaid waivers and petitioned the Supreme Court to recognize our constitutional right to live where we wanted. Now we’re fighting for funds to improve the home care infrastructure, which is part of the essential grid of systems that keep our nation competitive.

And we’re going to win this fight.

Consider that despite the best efforts of our community’s advocates we never actually got a law passed that requires states to provide home care. But we changed the conversation in such a big way that now there’s a plethora of waivers and programs in most states. And we still may get that law, as on March 16, Rep. Debbie Dingell and Senators Maggie Hassan, Bob Casey and Sherrod Brown released draft legislation, the HCBS Act, to mandate that Medicaid provide personal assistance as a right, not a waiver.

Such a law is necessary to ensure every American has access to personal assistance no matter what state they live in. Yet regardless of whether we get a law passed, we no longer need to prove the value of home-based care — there’s widespread societal agreement on that. Now we have an infrastructure to protect and improve, and the language to make that case.