America Faces A Severe Caregiver Shortage, As This Grad Student Learned Firsthand

A case study in how the pandemic has affected people with disabilities — and what could be done about it.

It’s hard to imagine a university student in America who was more excited about this fall’s return of classroom learning than Justin Martin, who is starting the second year of a master’s program at Vanderbilt.

Martin, 25, is studying education and hopes to become a high school English teacher. It’s a dream that many have doubted Martin can achieve because he has cerebral palsy, making it impossible for him to walk or handle many daily activities on his own. But with the help of round-the-clock caregivers, Martin got through undergraduate studies at Kenyon College in Ohio ― living in the dorms, joining a student improv group and eventually graduating with honors.

After making the best of a remote first year at Vanderbilt, he was eager finally to meet his classmates in person. But when classes started in late August, Martin was not there physically ― or virtually.

He couldn’t find caregivers in Tennessee, despite weeks of intensive searching. When he informed Vanderbilt and petitioned to take his classes online while living with his family in Ohio, administrators instead offered a separate program of one-on-one virtual learning. It was, a school official told him in a letter, “the very best we can do.”

Martin didn’t agree and eventually Vanderbilt administrators changed their minds. He thinks appeals from supportive faculty and staff, or maybe inquiries about his situation from HuffPost, might have helped. Either way, he is remotely learning with his classmates now and happy that the university reconsidered its position.

But Martin worries about other students with disabilities, whether at Vanderbilt or other institutions, who might not have allies to plead their cases. And he worries about the disabled people all over America who can’t find caregivers, because the shortage he encountered in Tennessee is actually national ― a problem that existed before COVID-19 but has, by all accounts, gotten much worse since.

It so happens the federal government could address that shortage soon. A key piece of the “human infrastructure” legislation that Democrats want to pass this fall would dramatically increase federal spending on caregiving, in ways designed to make the workforce larger and more stable. But convincing Congress to spend what it takes to fund that initiative, like convincing universities to make sure disabled students can participate fully in class, will not be easy.

A Crisis Decades In The Making

Martin knows all about politics and how everyday people can affect it. I first got to know him in 2017, during the debate over repealing the Affordable Care Act. Part of the legislation that Republicans were trying to pass back then would have cut funding for Medicaid, the joint federal-state program that is the primary financier of home care services and community supports for people with disabilities.

For Martin, those services include aides who help him with daily tasks like meal preparation and bathing, as well as transportation ― basically, everything that allowed him to live and study at Kenyon. And he was eager to speak out about the potential impact of cuts to those programs. “It’s almost incomprehensible what my life would look like without these services,” he told me at the time, “because there would be no ‘my life’ without these services.”

The legislation failed, in part because disability advocates did such an effective job of generating outrage. Their protests on Capitol Hill were among the most widely publicized events of that debate. But even as disability advocates were fighting to protect existing programs, they were warning that those programs were insufficient ― and that, in particular, there were already too many people out there who couldn’t find caregivers because of shortages.

“I promise you, there was no stone that we left unturned — literally hundreds of hours on phone calls and emails.”

- Justin Martin, Vanderbilt graduate student on his search for care providers

Low pay is a big reason why. As of 2019, the median hourly wage for home care workers in the U.S. was $11.52, according to the think tank and advocacy group PHI. That, plus unpredictable hours and a lack of benefits, explains why 1 in 5 home care workers have incomes below the poverty level and more than half are on some form of public assistance.

The historic reason for paying these workers so low is tied to who these workers are: women, and disproportionately women of color, who worked for little or no pay because they had so few other options. But nowadays they have more alternatives, which means fewer are willing to work for so little money. Meanwhile, caregiving services are in more demand than ever, thanks to a population that is aging and living longer with disability.

In a functioning market, the problem would solve itself: Wages would rise in order to attract and then retain a larger caregiving workforce. But most individual families can’t afford to pay for care on their own, and Medicaid’s funding for the services has been limited, with neither the federal government nor the states providing the money it would take to make caregiving a financially stable occupation.

For years, experts have been warning that more severe shortages were imminent. In 2019, PHI predicted that the nation would have to fill 7.4 million caregiving jobs in the coming decade, mostly because so many people in the field were likely to leave it.

The Effects Of The Pandemic

And that was before the pandemic, which made care work especially hazardous because of the close personal contact it required. In many states, they didn’t get priority for protective supplies or qualify for higher pay because, amazingly, officials didn’t designate them “essential workers.” Home care workers were also dealing with the same challenges as other low-wage workers, like a dependence on public transportation and inability to arrange care of their own loved ones.

Facing these circumstances, many care providers dropped out of the workforce and are in no rush to come back now. And although agencies are starting to offer higher pay, sometimes taking advantage of COVID-19 relief money that states have made available, experts and advocates say it hasn’t been enough to fill the gaps.

The word ‘shortage’ or even ‘crisis’ doesn’t really do it justice,” says Nicole Jorwic, senior director for public policy at The Arc, an advocacy group for people with intellectual and developmental disabilities. “It’s a problem in every city, county and state.”

Martin and his family learned that firsthand over the summer, once it became clear Vanderbilt was restarting full, in-person learning. When he was younger, they sometimes struggled to find providers. But in the end they were able to get the support they needed so that both his father (a truck driver) and his mother (a nonprofit grant writer) could keep working and so that Martin could attend Kenyon.

“The word ‘shortage’ or even ‘crisis’ doesn’t really do it justice. It’s a problem in every city, county and state.”

- Nicole Jorwic, The Arc, on the struggle to find home care workers

This time, they had no such luck. After working laboriously through a long list of providers, they could find just one caregiver who was able to provide just one overnight shift a week. And that one provider later had to back out. They talked about having one or both of Martin’s parents quit work and move to Nashville with him, but that wasn’t tenable either. There was just no way for Martin to attend grad school in person.

“I promise you, there was no stone that we left unturned ― literally hundreds of hours on phone calls and emails,” Martin said. “I wanted this so badly, I’ve wanted nothing more for years than to just leave Ohio for a while. If there was a way to make this work, we would have made this work.”

Martin’s experience was by no means unique. Stories of people with disabilities struggling to find care providers have generated headlines across the country, everywhere from New Jersey to Montana.

Over the summer, a coalition of disability organizations in Ohio surveyed members about the challenges they were facing. It was not a scientific poll, but they were inundated with responses from people reporting they couldn’t find home health aides and other support staff ― or were afraid of losing the ones they had.

Among the responses:

“Had trouble finding one before, really bad now.”

“Individuals are not comfortable picking up new cases and PPE was not available, or provided, early on.”

“They don’t get paid enough and if their car goes down they can’t fix it.”

“The agency can’t find any ... the staff have to overwork themselves.”

A Promise Of Help From Washington

The proposed legislation to shore up home and community care is the Better Care Better Jobs Act, co-sponsored by Sen. Bob Casey (D-Pa.) and Rep. Debbie Dingell (D-Mich.).

It envisions increasing the federal Medicaid funding available for home and community services by roughly $400 billion over 10 years. That would be enough to increase funding for such services by one-third, according to an analysis from the Henry J. Kaiser Family Foundation.

With that kind of money, advocates say, states could expand their programs to cover more families, wiping out waiting lists many of them have because funds are currently so limited. But to get those federal dollars, states would have to agree to a number of conditions ― among them, raising pay for the workers in order to enlarge the labor force.

“It’s the single greatest opportunity we’ve had in generations to establish the kind of policies and programs we need.”

- Ai-jen Poo, National Domestic Workers Alliance, on legislation to shore up caregiving

The legislation would not address all of the problems that make it difficult for people with disabilities to get the support they need, and there’s no guarantee states would take the money. Conservatives have attacked it as an attempt to prop up unions representing home care workers, rather than an attempt to help people with disabilities.

Advocates reject that argument, saying the interests of those giving the care and those who receive it are aligned. And while advocates don’t think the bill would be a panacea, they are confident that the investment alone would make a big difference. Ai-jen Poo, president of the National Domestic Workers Alliance, has called the bill “the single greatest opportunity we’ve had in generations to establish the kind of policies and programs we need.”

The Alliance is part of the Care Can’t Wait coalition of labor and disability rights organizations promoting the legislation. Their support is a big reason the proposal has gotten as far as it has, with President Joe Biden including it as part of the domestic agenda he wants Congress to pass this fall.

But getting even a significant chunk of the proposed $400 billion into the final legislation may be difficult, because Democrats are trying to finance so many initiatives even as they face pressure from their more conservative party members, like West Virginia Sen. Joe Manchin, to downsize the entire package. And so advocates have to keep pushing ― and fighting.

A Political Struggle That’s Personal

Of course, victories in the struggle for disability rights and acces have never come easily ― in politics or in the private sector. That’s actually one reason Martin was excited to attend Vanderbilt: Part of the education school’s mission is to promote teaching that is responsive to the needs of traditionally marginalized communities. It’s also why he was surprised they resisted his request to Zoom into class when he couldn’t be there in person.

The decision was particularly distressing, Martin said, because the second-year curriculum focuses on student teaching and then discussing experiences with classmates. “It’s stressful, it’s wonderful, it’s scary,” Martin said. “Sometimes you need to turn to someone else who’s in the trench and go, ‘Is this idea going to work? Should I be doing this?’ or, ‘This happened. Has this situation happened to you in your placement? What did you do?’”

When Vanderbilt initially turned down Martin’s request, the dean, Camilla Benbow, explained in a letter that the university had decided against allowing online learning for anybody, because it had proven so inferior during the pandemic. “Please know that you are not the only one who has asked to be a remote student and their request declined,” Benbow wrote in the letter. She also mentioned that the university had increased Martin’s scholarship, in the hopes some extra money might help with caregivers.

“I understand that you are not satisfied or happy with the solution,” Benbow said at the end. “It is, however, the very best we can do for you under these circumstances.”

Martin saw things very differently.

“If we did this in a physical classroom, it’d be the equivalent of setting me up in a broom closet down the hall and checking in on me every few days while the actual class went on elsewhere,” he said. “It’s classic separate but equal … an absolutely indefensible position from a place that supposedly leads the nation in special education.”

When HuffPost reached out to Benbow and to Vanderbilt officials, they declined to comment on the situation specifically, saying it was policy not to discuss such things publicly. But the university provided a statement, saying that it was committed to making sure all students “could fully take part” in university life, even amid the difficult challenges of COVID-19.

“We are dedicated to the ongoing work of ensuring that all members of the Vanderbilt community feel supported and both seen and heard on our campus,” the statement said, “and continue to make training available to students, faculty and staff to address campus culture and to help our community members enhance their ability to respond to difference with respect and understanding.”

A day later, they let Martin know he could join remotely after all. At one of his first classes, one of the topics of discussion was “individual education plans,”or IEPs, for children with disabilities. A classmate of Martin’s had encountered one in their first week of student teaching.

Martin weighed in with his own experience, from back when he was in school. That kind of exchange was a big reason why he felt it was so important to be in class ― so that he could interact with fellow students, offering insights they might not get otherwise, just as they can for him.

“I think we have a moral and legal obligation as a country, to open the doors of education to as many people as we conceivably can,” he said. “I think that times of crisis can sometimes make both people and institutions and nations forget their values. But times of crisis can also remind us of what our values are.”