Jandos Rothstein
Alice (not her full name) has been a direct-support professional for 12 years. Direct-support professionals are paid caregivers who support disabled people, particularly those with intellectual and developmental disabilities. Alice describes herself as “Hispanic, originally from Texas,” and she currently lives in Ohio. By her own reckoning, since the pandemic began, she has been working 80 hours a week, helping her clients use the bathroom, shower, and otherwise go about their daily lives. “I have to cover hours that are not covered by other staff,” she explained over instant messaging. Alice makes $11.75 an hour, but gets paid time and a half for overtime, at least. She has also been receiving “hero pay,” which is just a couple of extra dollars per hour. She doesn’t know how long that will last. When asked about unionization, Alice replied, “I don’t know what that is.”
Alice’s experience is shockingly typical. According to a recent report from the ANCOR Foundation and United Cerebral Palsy, 43.8 percent of all direct-support staff quit within a year. In every interview conducted for this piece, it seems that this problem has only worsened in the pandemic. As schools closed and coronavirus spread, workers scrambled to organize adequate child care, or were afraid of contracting the virus and sickening their own vulnerable family members. Care work is intimate. It’s not a job where one can reasonably keep social distance. Already high, attrition seems to have only accelerated.
The median hourly wage for direct-support workers was $12.09 in 2017, and it rarely moves much. While that is above the federal minimum wage, the work is hard, and the hours are long. State Medicaid programs dictate reimbursement rates—the amount of money a provider can request from the state in exchange for delivering a service. Ari Ne’eman, senior research associate at the Harvard Law School Project on Disability, explains, “States are very reluctant to take on direct spending obligations, so [direct-support workers’] pay generally rises very slowly, even as other industries increase wages to respond to market conditions.” As a result, hourly wages for direct-support workers don’t increase enough from year to year to keep up with inflation in many states. In addition, most direct-support workers do not have paid leave. Ne’eman points out, “Direct-support work becomes employment of last resort.”
As reported by Rachel M. Cohen last year, more than 500,000 home care workers have been unionized through the Service Employees International Union, which represents approximately 1.9 million workers in the United States and Canada. But unionization is still not widespread in the industry. According to the Bureau of Labor Statistics, there were over 1.4 million home care workers, according to the most recent report from 2015.
Professor Evelyn Nakano Glenn has written extensively on the sociology of care work, most recently in her book Forced to Care, which explores the way caregiving is often coercive in our society. In particular, she focuses on the ways that race and gender are inextricably connected with how we conceive of care work. “In some ways, care work is being seen as unskilled because it is something that women know how to do naturally,” Nakano Glenn noted in an interview with the University of Minnesota’s Gender Policy Report. “Very often, the care worker is praised for going above and beyond what the requirements are by investing in that work emotionally.” At once, care work is both priceless and somehow beyond monetary value.
As Nakano Glenn notes in Forced to Care, there is also a racial element to how we conceive of care work. “[Employers] view women from the global south as coming from traditional cultures in which families honor and take care of the elderly. Employers feel that they are more likely to work without complaining and show proper deference,” Nakano Glenn writes. “If caring is viewed as a cultural trait or a natural attribute of women from Latin America, Africa, and Asia, then their labor can be seen as effortless and not real work.” By extension, poor pay and long and uncompensated hours are viewed as natural too.
In her old age, Evelyn Coke, a Jamaican immigrant and home health aide, had become disabled herself. She needed dialysis three times a week and used a wheelchair. During her career, she was not compensated at the minimum wage, and she did not receive overtime. She sued, but in Long Island Care at Home v. Coke (2007), the Supreme Court ruled that she was not entitled to back wages, because home health care workers were still exempt from the protections of the Fair Labor Standards Act extended to most other categories of employment.
The judgment against Coke was unanimous, and included Justice Ruth Bader Ginsburg, who is remembered as a champion for women’s rights. The court opinion, authored by Justice Stephen Breyer, raised concerns that higher home care costs would lead to higher rates of institutionalization for disabled people. Ironically, disability organizations have long advocated for higher wages for caregivers, on the grounds that it would improve quality of care. The desire to keep costs low is, primarily, in the interests of the private caregiving agencies and their profit margins, as well as budget-hawk lawmakers.
SINCE THE START of the pandemic, the federal government has done little to support caregivers. When he isn’t rambling about television ratings or baselessly speculating about voter fraud, President Trump occasionally makes comments about “protecting seniors,” seemingly forgetting the existence of millions of vulnerable and disabled Americans under the age of 65 who need care. This gaping oversight has, unfortunately, been reflected in federal policy. The Department of Health and Human Services announced millions in no-strings-attached provider relief funds earlier this year, but only for nursing homes. The 2.5 million disabled Americans receiving services in their own homes and group homes are out of luck, and the agencies and advocates that support them are bracing for budget cuts and disaster.
Expected state and local austerity could bite even harder. “The way the Medicaid law is written, the first place to cut comes from optional programs, and [home care is] optional,” says Nicole Jorwic, senior director of public policy for The Arc of the United States, a leading nonprofit serving people with intellectual and developmental disabilities. Medicaid is required to provide nursing home care, but it is not required to provide any alternatives. Essentially, all non-medical home care is optional, legally speaking. Medicaid is generally the second-largest line item on any state budget, after education spending. When budget shortfalls loom, Medicaid is one of the first places state policymakers look to make cuts. The majority of adults who need long-term services and supports live in the community, according to AARP. If cuts are administered, millions of Americans could soon have to choose between nursing homes and no state support at all.
This was nearly the case after the Great Recession. The 2009 American Recovery and Reinvestment Act provided dedicated funding for states that averted cuts to home and community-based services—assistance disabled Americans rely on to do everyday, basic tasks at home like dressing and showering. So far, legislative efforts during the pandemic have failed to provide similar relief, despite pressure from advocates. Jorwic paints a grim picture: “It’s pretty safe to say that people with disabilities and caregivers have been ignored by Congress.”
For paid caregivers, unpaid caregivers, and community advocates, one key point of contention has been the legal definition of “caregiver” itself, which may not include caregiving outside the immediate family. “There’s some paid leave provisions in some of the relief packages,” Jorwic said, “but they haven’t been broad enough to cover, for example, grandparents or siblings that may need to take time off work” to care for disabled family members.
Paid leave for caregiving was most prominently featured in the Families First Coronavirus Response Act, but “the text of the law said school closures and child care centers,” explained Kathleen Romig, a senior policy analyst at the Center on Budget and Policy Priorities. “It did not allow for adults who have caregiving needs,” meaning care for disabled adults and seniors.
Another contentious definition: the meaning of “essential,” as in essential workers. Initially, most states did not include home health and disability support services in that definition, and in some states, that is still the case. That means many professionals did not have access to personal protective equipment, or PPE. The Arc of New Jersey, for example, operates 20 local county chapters, which provide direct services for the entire state. In March, they struggled to find PPE to protect their employees and the disabled people they serve. “Part of the difficulty is that we weren’t viewed as a medical facility,” explained Celine Fortin, associate executive director. “PPE was being held for essential health care workers, and we didn’t meet the official definition of essential health care worker.” It took months to secure necessary supplies.
Professional caregivers in New Jersey are still not considered essential in a legal sense, according to Fortin, but it has become easier to acquire PPE. “I think the biggest supply really came from the tenacity of the people who work for The Arc, making phone calls, going online, tapping into every person and resource they could think of,” she said. In particular, she praised a FEMA program that partially reimbursed some expenses. “Coming up with the money to pay for all of this is pretty difficult, but we’re doing the best we can, and we have to have this equipment,” Fortin told me.
UNPAID CAREGIVERS HAVE also struggled during the pandemic, with little to no assistance. Sarah Coletti lives in Massachusetts and describes herself as a “retired software developer, mother, and daughter.” In April, her father, who has Alzheimer’s, was moved to the hospice unit at a VA hospital. Due to the virus, he hasn’t been allowed to have visitors. Coletti hasn’t seen him in months, except for video calls. In May, her mother died. Coletti suspects the cause was coronavirus, despite a negative test. “Everyone who was closely involved with her care wound up getting COVID,” she explained over the phone. And through everything, Coletti and her husband have been providing round-the-clock care for their son, Adam.
Adam is 31 and has a developmental disability. He likes music and making noise, particularly by tapping on or shaking things, but he does not speak. He also loves being around other people. “In ordinary times, he’s very social,” Coletti told me. For the past nine years, Adam has lived in a group home and attended an adult day program. The group home was already having difficulty filling shifts and retaining staff before the pandemic, and Adam needs a substantial amount of support. In March, the state of Massachusetts closed all day programming for disabled people, along with schools, state parks, and other public services. Around the same time, the group home stopped allowing visits. “You can’t put somebody who’s nonverbal in a house and not be able to visit them,” Coletti explained. “[Adam] can’t make a phone call and say, ‘I think I have athlete’s foot,’ or whatever. Minor things don’t necessarily get caught by [staff].”
Coletti was also concerned about what would happen if Adam ended up in the hospital alone. Because Adam does not speak, it can be difficult for unfamiliar doctors and nurses to understand him. “Whenever he’s been in the hospital, we’ve just arranged to be there with him, so we could interpret,” Coletti said. So despite already providing care for her elderly parents, Coletti and her husband decided to move Adam home to care for him. They have been doing everything direct-support staff normally do, but without any pay.
Adam’s world has shrunk significantly since the start of the pandemic. Like many people with intellectual and developmental disabilities, he struggles to wear a mask, being sensitive to touch on his face and head. “He keeps a bandana in his teeth, which doesn’t work like a mask, but at least when we’re taking a walk people don’t freak out,” Coletti told me. There are many activities Adam is now excluded from; he can’t go with his parents to run errands like he used to. “[Adam] used to love to go grocery shopping, but now we don’t do that.”
Coletti is adamant about the importance of increasing direct-support worker pay. Many of Adam’s support workers have multiple jobs; just working as a direct-support professional often isn’t enough to cover the bills. “The pay scale for direct-service professionals should allow them to work one job and be good at it,” Coletti said. She also stressed the importance of paid sick leave. “[Group homes] are so short-staffed that if somebody’s calling out sick, it throws everything out of whack. So people who are dedicated don’t do it. They don’t call out sick when they’re sick.”
When budget shortfalls loom, Medicaid is one of the first places state policymakers look to make cuts. Millions of Americans could soon have to choose between nursing homes and no state support at all.
Some states, including Massachusetts, provide some financial support for family members who provide care at home. Coletti praised the program, which her family was enrolled in before Adam moved into the group home. But the program is not technically available to her family right now, because in order to access it, Adam would need to give up his spot in the group home. Waiting lists are years long, and there’s no guarantee he’d be able to go back. Adam seems to prefer living in his group home, and the transition back to living with his parents has been difficult. “He’s normally a pretty happy guy, but he got unhappy after about two months of hanging out with Mom and Dad,” Coletti said.
When there isn’t a pandemic, respite care is an important service for family caregivers, in which paid caregivers provide care for a short period of time. Caregiving is work, and even the most devoted and loving family caregivers need breaks. “We could really use some respite care,” Coletti told me, then paused. “We’re probably too nervous to accept it, even if it existed, but it doesn’t exist,” she said.
Adam’s day program recently reopened with some modifications, and while Adam is still living at home, this has given Coletti the opportunity to have some time for herself. “I was feeling really ragged, but now that I get in a couple hours [of sleep] every day, now that I’m starting to exercise again, I’m starting to feel better, and I’m better at caregiving when I’m feeling better,” she said. Adam is happier to have a small sliver of normalcy back too. “My son is very particular and develops strong relationships with certain people,” she said. “More of the staff that he was used to have come back, and his favorite people have come back. And now, he’s much happier.”
The future is uncertain. The pandemic isn’t over, and a second wave is looming as we head into winter. State budget cuts are looming, too. If Congress doesn’t act, if Congress doesn’t secure relief funding for Medicaid home and community-based services, if care workers are not deemed “essential,” and if the needs of Adam and the people who care for him, paid and unpaid, are ignored, some of the most marginalized members of our society will suffer in silence.
