With Medicaid and Health Care Under Attack, Home Care for the Aging Faces Crisis

Many will take to the streets to protest Trump’s budget proposal this summer, which threatens to slash everything from solar panels to school lunches, but the deepest cuts will be felt deep in our neighborhoods — in the living rooms of aging grandparents and neighbors using wheelchairs, for whom chronic everyday struggles are about to spiral into an acute crisis. Seniors and people with disabilities are two fast-growing but often overlooked groups that are facing an economic cliff if Trump and Republicans push through plans to gut Medicaid.

Health care for the most vulnerable people in the country faces unprecedented cuts under Trump’s proposed Medicaid cutbacks, along with the Republicans’ Obamacare repeal legislation — both of which would deprive poor and middle-class households of hundreds of billions in health funds over a decade. In addition to endangering the survival of thousands of elderly and disabled Americans, the cuts threaten to upend a revolution in care now unfolding nationwide.

One of the bright spots of innovation in Medicaid in recent years has been the rise of a community-based home care system that provides personal attendants and health aides to households, delivering basic health and social services and household help for people relying on aid to live independently. Today, with hundreds of thousands of care workers, California is a weathervane for this rising health care sector.

According to research by the Labor Center of the University of California, Los Angeles, even prior to Trump’s budget plans, California families have struggled to pay for the growing cost of in-home health services, despite California’s relatively robust home health care structure, while caregivers struggle with unlivable wages.

In some cases, those two groups overlap, with many family members receiving some payment to act as caregivers within the Medicaid-financed framework.

Whether employing outside help or supporting a relative caregiver, long-term in-home support enables seniors and people with disabilities to remain in their communities, near family and friends, while providing cohesion in intergenerational neighborhoods as the baby boom population climbs.

The system’s added benefit is a dramatic reduction in the long-term costs of care, likely the result of investing in preventative health maintenance, rather than having to hospitalize people after encountering a medical crisis. Add to this the economic benefits of keeping residents securely housed in the communities where they have typically been living as workers, parents and taxpayers for most of their lives. Currently more than two-thirds of seniors over the age of 65 face three or more years of long-term care over the duration of their lives, and it’s both inhumane and unnecessary to move them all into institutions.

As one 73-year old interviewee put it, while receiving care at home, “I am not able to do a lot of everyday things, but I’m trying to hold on to as much of my personality as I can.”

But what about the workers making it possible for people to hold onto normalcy as they age? The growing low-wage workforce of home caregivers is mostly composed of women of color, who toil for long hours under high levels of physical and emotional stress. The job generally pays unconscionably low wages, which drive the sector’s extraordinary turnover rates. This turnover disrupts not only health care routines but also deep relationships of intimacy in many homes.

According to UCLA researchers, who surveyed hundreds of home care clients (program participants who employ personal care services either for themselves or for a family member) about 6 in 10 respondents said government support for their home care services “falls short of their needs,” and about 1 in 5 must supplement public subsidies by paying wages directly to home aides. About 40 percent of those surveyed pay out of pocket, and many lack another source of personal funding like a retirement pension. About a third of these households earn less than $25,000 a year. In an expensive state like California, that might mean families are employing a low-wage home caregiver while struggling to make rent themselves.

Nationwide, employing a year-round long-term senior caregiver or health attendant costs some $40,000 on average on top of other health care needs. But while the services can drive up the cost of living by $160 per day, this care amounts to only about half the price of living in a nursing home.

Medicare and Medicaid funding helped cover most of the people employing home care services, along with other payments like veterans benefits. However, with the proposed repeal of the Affordable Care Act poised to shove more costs onto California’s already-stretched Medicaid (known as MediCal) program, Californians may see Medicaid spending explode by $6 billion in 2020, rising to $24 billion in 2027. According to the Congressional Budget Office, across the country Medicaid defunding would disproportionately hit “older people with lower income,” especially those between 50 and 64 years old — that is, people just about to enter the phase of life when most people will need long-term care at some point.

Yet demand for home care is swelling across California and nationwide, with some 10,000 people turning 65 each day. The crisis reflects a costly paradox in the home care economy: while the sector is set to grow at quintuple the rate of the national workforce between 2012 and 2022, the job just doesn’t pay enough to live on. Aides earn an average of about $10 an hour, less than $1,700 a month — on par with frontline retail and fast food workers.

Moreover, many caregivers work only part time, so annual earnings are roughly just $13,000. In each state, home care aides, many of them family breadwinners, earn only about half the local annual living wage, leaving about 60 percent of the labor force scraping by on some form of public assistance, which often includes the same precarious fund behind their substandard pay scale, Medicaid.

The poverty wages are partially the result of an outmoded exemption in federal labor law that exempts many in-home health aides from minimum wage protections. Earlier attempts by Obama to expand federal wage protections to home care workers were halted in court by an industry lawsuit, and reform efforts have been sidelined under the Trump administration.

But beyond regulatory issues, the challenge is how the health care system responds to multifaceted community needs. The home care crisis reflects deeper social deficits, global and local. In coastal immigrant neighborhoods, for example, culturally competent care for non-English-speaking elders can be a challenge. Meanwhile in Minnesota, seniors are increasingly concentrated in rural communities, while health services and younger workers cluster in metro areas, leaving underserved communities unable to attract, train and support a qualified care workforce.

California home care workers do relatively well in some ways. They earn a bit more than the national average, in part thanks to relatively high rates of union representation through AFSCME and SEIU, which organized in the 1990s to make home care a major driver in the labor movement. California’s home care workforce is more stable, too, because most caregivers are also family members, which is a factor linked to lower turnover rates.

But there’s a long way to go for the people working round the clock in a job often dismissed as a form of elder “babysitting.”

Take Lisa Scott, an El Dorado-based home care provider and a member of California’s AFSCME domestic workers union. While Scott’s union contract provides some economic security, including overtime pay, her wages still hover at just $10.40 an hour.

“In the past, I went to food banks for my own groceries, and it was also tough … to afford the gas I needed to drive to each of my clients’ houses,” she noted at a recent media conference. Yet, with what little she has to spare, she helps out the three elderly women in her care, buying a little extra food or the occasional movie ticket to “get them out of the house.” Despite the hardships, she says, “I love it. I even changed careers to become a caregiver.” Scott still works nearly 60 hours a week even though she’s now a grandmother herself.

Those who receive care are often equally appreciative of the people that help them live day to day. Melissa Crisp-Cooper, a Bay Area-based disability rights activist, faces a dilemma of struggling to do right by her caregivers.

“Good attendants can be hard to find,” she said. Crisp-Cooper, who uses a wheelchair, notes, “The high rate of turnover disrupts my life…. Over the years I’ve had to figure out how to hire people and set expectations and personal boundaries [which can be] especially difficult because I don’t control how much they are paid…. Someday I hope that we as a society are able to give our attendants the compensation and benefits they deserve.”

That day may not come soon, given Trump and Congress’s regressive budget programs. According to UCLA Labor Center researcher Lucero Herrera, “These cuts are taking us in the wrong direction…. [We] need to further invest, not disinvest, in home care…. But now states and advocates must backtrack to maintain the services they have.” If Medicaid is slashed, even states like California with relatively robust senior and disability care infrastructures “most likely will end up with reduced coverage or eligibility for their constituents.”

Going forward, the report recommends that California get ahead of the care crisis through cooperation between communities, workers and social agencies: on the consumer side, households could boost pay for caregivers with subsidies from tax credits, for example. To empower labor, local governments could provide a legal framework for privately employed home care workers to engage in “collective bargaining at a neighborhood or city-level” and negotiate contracts with private employers, as the state’s unionized workers can.

Aligning home care wages with the social and spiritual investment caregivers pour into their jobs is a key health care challenge of the 21st century — testing our ideas of what kind of care our elders genuinely deserve.

As Trump and Congress move to claw public health finances backward, Scott’s co-union member Terry Walker-Dampier fears what a Medicaid cut would mean for her own health, and how that might affect her career, now that her chronic back problems have caught up with her after a quarter-century working as a caregiver.

“During the day,” she testified earlier this year at a packed town hall, “nobody knew I had the pain because I always do my work with a smile on my face. A few years ago I was so tired of this pain that I thought to myself, I’m going to take my own life.” And with Congress threatening to push her off her Obamacare plan, and many home care recipients across the state facing the same threat, she could have been speaking for both sides of the system when she said, “I’m pleading for us all as a whole, because we’re all human beings and we all need affordable health care. We all want to live with peace of mind, and we shouldn’t have to choose between medical care and putting food on the table.”

The home care gap reflects the moral hollow at the core of Trump’s social agenda: blaming poverty on poor people, and blaming people who need help dealing with aging or disability for their own vulnerability. The president’s budget outlook for the health system leaves the true value of care out of the equation.