Susie Angel and Sandy White were a dynamic duo in Austin, Texas. Angel was an accomplished disability advocate, editor, organizer and dancer; White was her best friend and personal care aide who helped Angel and her life partner, Juan Munoz — both wheelchair users with cerebral palsy — stay healthy and active in their own home. “We had an awesome relationship,” Munoz says.

Then the unthinkable happened. One night in June 2022, White, 60, suffered a heart attack and died in her sleep. Though shaken by loss, Munoz, 52, immediately began caring for Angel, 53, by himself. He transferred her in and out of bed, helped with washing and dressing, made meals, managed medications, housekeeping, shopping and transport. “I could make it alone if I need to,” Munoz says. “Susie needed 24/7 service.”

Angel and Munoz began a frantic search for a new personal care aide. They could be hopeful, with an advantage over most, because Angel worked for years at the Coalition for Texans with Disabilities, an advocacy nonprofit with extensive ties in the area. CTD mobilized its full network of resources to find a PCA. But their hopes panned out to nothing. “We couldn’t find anyone,” says Dennis Borel, CTD’s executive director. “Forty-two different home health agencies … and not one had a single attendant that they could send to help our co-worker.”

As hard as Munoz tried, caring for Angel soon overwhelmed him. Reluctantly, he placed her in respite care for a two-week stay. “I didn’t want to put her in the nursing home, but I was exhausted,” he says. “She never came home after the nursing home.” Within a week she began choking on food and got a feeding tube, followed by three successive hospitalizations and pneumonia from which she never recovered. Angel passed away on Aug. 20, 73 days after White. “If we had an attendant, she would be here with us, I think, a couple more years,” Munoz says. “After losing Susie and Sandy … it was very hard.”

Borel acknowledges that his longtime colleague had complex health issues, including a doctor’s estimate in May that cancer could take Angel’s life in five years’ time and a lung tumor that proved too difficult to biopsy. But he is convinced that the lack of available home care hastened her death. “Even our organization, with all our connections, we couldn’t make it happen,” he says in a voice that still trembles with a mix of anger and grief. “What chance do other folks have?”

A nationwide shortage of PCAs threatens millions of disabled people and seniors who rely on services. These workers are essential to the right of disabled people to live in their own communities and avoid institutions. And while demand for their services grows, PCAs earn few if any benefits or chances for advancement, and most importantly, receive chronically low, uncompetitive pay. For workers, the pay is so poor that it often leads to poverty, burnout and quitting. For those relying on services, it is harder and harder to fill care-hours, stoking fears and uncertainty, health setbacks, or even loss of their homes or lives. Conversations with disabled people, workers, advocates and experts provide snapshots of a life-sustaining system under extreme stress.

The Forgotten Workforce

Susie Angel was also prescient. Part of her advocacy work was to push for higher PCA pay. She invited reporters into her home to show how her well-being and productivity hinged on access to home-based services and on better pay for White and other care providers. Texas legislators have set the base wage paid by Medicaid to PCAs at $8.11 per hour. Though often boosted to a median of $10.82 by the agencies and providers who hire them, the pay for PCAs in Texas ranks among the lowest in the nation, according to the public-health policy organization PHI. “People are not willing to work for these wages anymore, and it’s been that way for a while,” Borel says. “Eight dollars and 11 cents is not competitive, and the workforce is evaporating.”

What’s happening in Texas is also happening across the country, as the wages of 2.6 million care workers are outpaced by other service jobs requiring less training. While Starbucks and Amazon average $17 and $19, respectively, plus health coverage, the average wage for PCAs and home health aides stands at $14.07 per hour, according to the Bureau of Labor Statistics. Nearly 19% of PCAs live below the poverty threshold, and more than half receive some form of public aid.

A longtime advocate summed up the situation succinctly: “Regardless of where you are, it’s more difficult to fill these caregiving jobs, because other jobs in the area are paying more that are much less emotionally taxing and that have opportunities for growth. It doesn’t matter if you’re in Portland or if you’re in central Illinois, the wages down the street are still going to be higher than whatever the home care wages are. The (home care) workforce crisis was in a crisis for decades before the pandemic. We’re at a point where it’s getting to catastrophic levels.”

It’s Very Hard to Find Help

Speaking on the phone on a late-January day, Ken and JoAnn (last names withheld) sound on edge. In the morning came news that President Joe Biden would declare an end to the COVID-19 public health emergency on May 11. To many it was only a passing item, but to Ken and JoAnn, the news meant they may lose a provision that helps keep Ken at home and a roof over their heads.

Ken, 62, and JoAnn, 64, are married and live in rural northeast Pennsylvania, 90 miles north of Philadelphia. JoAnn is a physical therapist with 40 years’ expertise, and Ken an energetic C5-6 incomplete quadriplegic who has worked and led an active life since his injury in 1979. Their lives changed in 2019 when Ken endured two heart attacks, a number of follow-up surgeries and procedures, and a long rehab. When he was discharged home after eight months, he relied on an array of medical devices: an oxygen concentrator, humidity condensers, nebulizer and more. For the first time, he needed home care.

A recent study by the city university of New York estimates that 17% of home care jobs are currently unfilled, and demand is growing.

Finding that care proved to be a problem. At one point they called 16 different agencies and turned up only one nurse — who didn’t show up. The first nurse who did arrive at their home worked until break time, and never came back. Ken felt “blessed” when they finally found a competent nurse. Then the pandemic hit and changed the landscape again. With school-aged children at home, the nurse had to quit. Since JoAnn’s work was in home health, she too was laid off. She learned how to take care of Ken, and after three months, had weaned him off the ventilator.

For a limited time, JoAnn was able to collect unemployment insurance. When they couldn’t find the home care workers they needed, she gave up her job entirely, sacrificing her salary and health care benefits so she could keep providing care. Ken also qualified for a few months of unemployment. Just as his unemployment benefits were running out, JoAnn was approved as his paid spousal caregiver under a pandemic-era emergency Medicaid waiver. They’ve somehow hopped from stone to stone, managing to survive, but now they’re looking for the next stone because the Medicaid waiver they’ve relied on will most likely end May 11. All along, they’ve been burning through their personal assets. “We’re in trouble of losing everything we worked for — our home, everything,” Ken says, “because the money ran out quick.”

With paid caregiving coming to an end, JoAnn wonders if she should return to work. “It’s going to be very difficult to find the help he needs,” she says. They can’t afford private nurses at $80 per hour, and besides, respiratory nurses won’t make house calls to so-called “low maintenance” patients like Ken who no longer use a ventilator. Ken chuckles. “It’s nice hearing I’m low maintenance,” he says before he takes an oxygen break.

In the meantime, their home mortgage has been in and out of forbearance, and they’ve had mixed results getting financial help to cover their winter utilities. Ken has written to their representatives at all levels of government, plus departments, agencies and caseworkers, trying to make something happen, and making sure they see there’s a dire situation now in home care.

From Really Stressful to Incredibly Frustrating

It was only after moving to Rochester, New York, in 2016 that Ericka Miller learned how home- and community-based services could make her life better. In Florida she had struggled with her health, but enrolling for home care services was difficult.

“Honestly, the best decision I ever made was signing up for it,” says Miller, who is 36 and has spina bifida. “It really changed what my life looked like for the better.” No longer did she have to struggle with cooking from her wheelchair in a galley kitchen, or with wheeling laundry to machines located outside of her two-bedroom apartment. Now she had reliable access to transportation to and from her full-time job.

But the pandemic exposed the fragility of her situation. She went from two PCAs down to one, and eventually, without a word, that one stopped showing up as well. For about three months, she had no one at all. She came down with what she suspects was undiagnosed COVID-19 and got so dizzy and weak she couldn’t transfer from bed to eat or go to the bathroom. “That was a really stressful few months,” she says. One of her friends, Wilfredo Rodriguez, traveled from Florida to help her as a temporary caregiver. Rodriguez, 35, ended up staying as her live-in PCA.

In February 2022, Miller’s fiancé, Parker Glick, moved in. Glick, 34, uses a chair due to arthrogryposis that limits his arm and leg movement, and needs assistance for several daily activities including transportation to get to his full-time job as a disability rights advocate. Rodriguez became the PCA for both of them, doing the work of two or three attendants.

Combined, Miller and Glick are allotted 77 weekly hours of attendant care, higher than the limit Rodriguez can work, so Glick says that he and Miller “gently undercut” the number of service-hours they need. But not claiming their full number of approved hours leads to a Catch-22: “If we do not get those covered by people, then the state can return and say, well, since you’re not using them, then … you don’t need them next year,” Glick says. “They don’t know that out of the kindness of our attendant’s heart, who also happens to be our friend, those hours are in fact being covered but they shouldn’t be.” It’s a situation that could be fixed by hiring a second PCA, which would give Rodriguez some time off, and give them a backup to avoid nightmares like what Miller went through before. But after nine months, they’re still looking.

At the moment, the household is in transition. Rodriguez has found a place of his own in town, 15 minutes away. It is good news and anxious news. Now all three will rely on the public transit system to get Rodriguez back and forth — and get Miller and Glick to their jobs. Transit timetables do not match up to the early morning hours the couple needs in order to get started on time, or with their need on weekends when transit service is limited. “It’s not really just like one thing we can point at, but it’s how all of these systems work together,” Miller says. “It’s incredibly frustrating.”

A Roulette Wheel of Attendants

Across the country in Sierra Madre, California, 13 miles northeast of Los Angeles, Lara Minges, 47, is a social worker and advocate at Hand in Hand, a multistate group organizing people like herself who hire PCAs or other home workers. Minges relies on round-the-clock availability of care due to dysautonomia and cerebral palsy. Her mother was her main attendant until she passed away from pancreatic cancer three years ago. What Minges found afterward was inadequate care and in one case even ill treatment from PCAs.

Luckily, her nephew was able to fly from New Hampshire to her aid. He signed up through the state’s in-home supportive services program to become her PCA and help her through the long process of healing a broken back. He wound up staying for 13 months, leaving in October 2022. “A lot of us just don’t have backup attendant care … and that’s dangerous, especially if we don’t have family, because family usually pitches in,” she says. “But if you don’t have other family … your option is you often end up in the hospital.”

Before her nephew departed, Minges enlisted the help of a friend and together they screened and/or interviewed 15 people for a suitable replacement. She also had to offer a substantial benefit: free room and board, which in Los Angeles County she estimates is worth $2,500-$3,400 per month. In her three-bedroom home, Minges houses her new PCA in one bedroom, and offers the third bedroom to a weekend PCA provided through the state’s Department of Developmental Services — a position that has been rotating between workers. Minges points out that most people who need services can’t offer a housing benefit like hers.

Six weeks in, she is “OK” with the new setup but still adjusting to the instability of rotating weekend attendants. She has had seven people in three weeks. High turnover is a job-quality indicator and a chronic problem among care workers in general. At times Minges feels vulnerable in her own home. She cannot transfer on her own or use Hoyer-type carrier lifts due to blood pressure issues. When a weekend PCA shows up who cannot transfer her accordingly, she is stuck in bed.

Publicly funded aides earn $16 per hour in Los Angeles County, but the average living wage in California for a single adult with no children is $21.82, according to the Massachusetts Institute of Technology Living Wage Calculator. “Recruiting a sufficient number of caregivers will be difficult because the job pays minimum or near-minimum wage, below a living wage in even the state’s most affordable counties,” states a report by the California State Auditor. The report says that 40,000 Californians every month do not receive the home care services they qualify for — a number that is growing.

A Silver Lining

As a disability rights attorney and person with a vision impairment himself, Thomas Earle has advocated and helped others to get home- and community-based services for three decades. He is chief executive officer of Liberty Resources Inc., the Philadelphia-area center for independent living, and his deep knowledge comes through as he describes a failing service system. But his voice is energetic, not despairing, because he knows a tide has turned. We would not be at this place, he says, without making major progress in turning around thinking on long-term care.

The home workers shortage “really is a problem that is the fruit of the past two decades of hard advocacy to convince the federal and state governments to spend more Medicaid dollars in community-based settings,” he says. “As that shift happened, … the demand for direct care workers in the community has grown significantly.” PHI tracks the trend: Every year since 2013, home-based services has made up a growing majority of Medicaid long-term care spending, while the share for institutions has trended down (see sidebar). Related to this, from 2008 to 2018, the number of PCA jobs jumped from about 900,000 to almost 2,260,000.

“We have not seen an equivalent shift necessarily in the wages, health care benefits, paid time off, overtime and pension contributions … for a very demanding job,” Earle says. “These are all common benefits of employment that American workers are accustomed to receiving. … Our federal and state governments have failed to catch up to what is necessary to make these jobs attractive to the workforce that’s needed.”

Biden’s Better Care Better Jobs Act would have invested a record $400 billion in stronger pay and supports for home care workers and users, but it failed to get through Congress. Now with a new Congress, activists will look for smaller bills that might gain bipartisan approval. A good example is the extension of the Money Follows the Person program through 2027, which was tacked onto the year-end $1.7 trillion Omnibus Spending Bill. MFP has helped 107,000 people in 43 states transition out of institutions and back into their communities.

But with Congress divided, changes at the state level may be more promising. United Spinal Association’s new Care Support Working Group is prioritizing its efforts here (see ‘Fired Up’ below). “How we really want to utilize our working group the most is helping craft items for our chapters to pursue in their own states and in their own communities,” says Steve Lieberman, United Spinal’s director of advocacy and policy.

In New York State, thousands of “Fair Pay for Home Care” activists won a $3 raise over two years, and pay that will stay at least $3 above minimum wage. Now activists are pushing for their original goal of 150% of minimum wage, and a range of work benefits like flexible hours, better supervision, and a career ladder for advancement so it’s not a dead-end job. Likewise in Texas, CTD and other groups are pushing a newly convened legislature to hike wages, and peg those wages in some way to the cost of living. CTD says costs would be offset by a number of savings, like turning away from institutional care, which according to the state, costs 227% more than yearly home services.

Despite the popularity of home-based services among people with disabilities and seniors, governments continue funding institutions. “These are political decisions, and they are getting lobbied from industry,” Earle says. “Changing institutional care is like turning the Titanic. … We need to make policymakers understand.”

The needs going forward are dizzying. From 2020 to 2030, the total home care workforce, including home health aides and nursing assistants, will grow by almost 1 million new jobs, but they will have to fill 4.9 million openings due to workers leaving for other jobs or retiring. Likewise, the number of adults aged 65 and older is expected to nearly double from 49.2 million in 2016 to 94.7 million in 2060. In other words, the problem is not going away. In the future, the need will be even greater.

Resources

• Coalition of Texans with Disabilities, publisher of Crushing the Workforce 2.0,
• Hand in Hand, Domestic Employers Network
• Making Their Days Happen: Paid Personal Assistance Services Supporting People with Disability Living in Their Homes and Communities (see Review above)
• PHI, publisher of Caring for the Future
• United Spinal Association

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