‘We don’t deserve this’: new app locations US caregivers underneath digital surveillance | US information

For years, LeDanté Walker set aside what little extra cash he could find so no matter the issue with his health insurance coverage, his caregiver was always taken care of.

Walker, who sustained a spinal cord injury when he was ejected from the back seat of a car in a 1997 accident, relies on a home care worker for many day-to-day functions, from moving from his bed to his wheelchair every morning, to helping him shower, get dressed, go to the bathroom and prepare meals.

But earlier this year, Walker abruptly had to dip deeper into his rainy day fund than ever before, after his caregiver’s paychecks fell $900 short of what she was owed. Walker offered her every spare dime he had saved, preferring to pay out-of-pocket to maintain the freedom and stability his worker provided than see her left in a financial lurch.

“I want to be independent,” he says. “That’s my right.”

The missing wages were caused by flaws in a new digital tool called electronic visit verification (EVV), an app downloaded to a home care worker’s smartphone that tracks their daily work output, physical location and hours.

Tech companies and lawmakers promise that EVV will increase efficiency and accountability in home care and will reduce fraud, waste and abuse in government-funded programs. But the tool has been a catastrophe for many in Arkansas, like Walker, and thousands of others across the nation. Advocacy groups and people with disabilities warned from the start that EVV systems would erode clients’ autonomy, make home care more difficult and threaten the progress of the disability rights and independent living movements.

At the heart of these disagreements are clients and workers – often women of color or immigrants – who feel as if they are constantly surveilled and under suspicion.

The Obama administration passed legislation requiring that EVV be implemented to manage all in-home personal care services paid for by Medicaid, the program that helps poor and working families in the US with healthcare costs. And on 1 April, under a federal deadline to implement or lose a percentage of its Medicaid funding, Arkansas rolled out EVV for self-directed clients like Walker who manage their care workers directly rather than go through a home healthcare agency. Most other states are also currently unveiling EVV systems.

According to Walker and dozens of other program participants in Arkansas, the implementation has been a disaster. Walker didn’t get official notification of the state’s digital transformation until four days before the EVV rollout. He called and texted his support coordinator, but she wasn’t answering. He was eventually guided to a training video on YouTube aimed at home healthcare agencies, not self-directed clients like him. It didn’t answer his questions.

Walker spent hundreds of dollars to purchase an extra cell phone for his home care worker, who asked not to be named in this story. She downloaded the state’s EVV app, called AuthentiCare, and began to use it. But it was frequently glitchy. Her 13-26 April timesheet was denied for “insufficient funds,” which made no sense to Walker, who carefully reconciles his worker’s schedule with the care hours the state allows him.

She was out $900 for two weeks’ work. Walker’s cash helped her keep groceries in the fridge and the lights on in her house, but it wouldn’t last long.

“It was chaos,” Walker says.

He adjusts his mask and pushes his waist-length dreadlocks out of his face. “I’ll be okay, because I worked out a system with my caregiver,” he says. But there are more than 2,000 people like him who receive self-directed services through ARChoices, a waiver program intended to help disabled and older Arkansans receive Medicaid-funded care in their own homes. He knows that few of them have the resources to underwrite their home care workers’ paychecks.

“We’ve been together 10-plus years,” Walker says. “If we were new, she’d be gone.”

LeDanté Walker: ‘They need to listen to people with disabilities. Ask. The. People.’ Photograph: Rory Doyle/The Guardian

The care crisis is especially acute in Arkansas. Pay here is notoriously low: after a decade, Walker’s caregiver still makes just $12.08 an hour, barely more than Arkansas’ $11 minimum wage. The cost of in-home care in Arkansas is 17% lower than the national average, in part because of low pay and high turnover. If Palco, the contractor that provides financial management services for self-directed clients in Arkansas, doesn’t pay his worker regularly, Walker knows, she might find work elsewhere through an agency or leave the industry altogether.

In a 18 June joint statement, Palco and Arkansas DHS conceded: “When we went live April 1 with the EVV system for self-direction clients, there were more issues than we anticipated.”

But self-directed clients and their advocates have been warning that the roll-out would fail for years. The state and its contractor, they say, were just not listening.

As far back as April 2019, Brenda Stinebuck, the executive director of Spa Area Independent Living Services, worried that the system would be a catastrophe. Arkansas did not include self-directed clients or live-in caregivers in pilot testing. DHS had no communication about EVV with her office. “The ability to direct your own care is getting harder and harder and harder,” she said at the time.

‘She’s with me 24/7. I don’t get overtime’

The move to EVV has also made the jobs of family and live-in caregivers more difficult.

Nancy Morell, 60, rises at 4am every day to bring her older sister Carolyn her coffee, bathe her, dry her hair and dress her. She sets her up to watch TV in the living room, with its broad windows overlooking the Ozark mountains outside Eureka Springs. Carolyn, who has cerebral palsy, can’t talk or move much, but they’ve found other ways to communicate.

Morell, a slender woman with shoulder-length blonde hair, is a natural planner, running a complicated multigenerational household with grace and focus. She does Carolyn’s shopping and laundry, prepares her meals, carries her to the bathroom and shifts her between a beanbag, recliner and sofa to keep her comfortable. In good weather, she takes her to the back porch and they watch the hummingbird feeders together. She trims Carolyn’s nails, puts on her deodorant and lotion, and takes care of any other personal needs that come up before her sister goes to bed – she shares a room with her 85-year-old mother– at about 8pm.

Morell attends Carolyn 16 hours a day, seven days a week – and she’s always available if there is an emergency in the night. “She’s with me 24/7. I don’t get overtime,” Morell said. Even so, the Arkansas department of human services (DHS) has determined that Carolyn’s needs can be met with 8 hours of care a day, so Morell is paid about $550 a week after taxes.

Before the EVV rollout, Morell attended one of only two trainings offered by Palco. She downloaded the 43-page manual. She watched the YouTube video.

She’s with me 24/7. I don’t get overtimeNancy Morell

Despite all her efforts, Morell couldn’t access the system for two weeks. When she finally succeeded, her paycheck was three weeks late. She logged on to the website to find out why it was delayed, and saw the system had red-flagged all 16 of her shifts. In the 13 years she’s worked for her sister, she’s had just two shifts red-flagged by Palco, and the problems had been quickly resolved. Now, like Walker, she couldn’t get through to a support coordinator on the phone.

But for Morell, the real problem is that EVV’s inflexibility adds new and seemingly arbitrary responsibilities to an already demanding job. Morell has to clock in and out of the app as often as four times a day, and on a fixed schedule, even though Carolyn gets care whenever she needs it, not at predetermined times. She sets alarms on her phone, terrified she’ll miss a clock-in because she is preparing meals or helping Carolyn to the bathroom. Her mother, who is Carolyn’s legal representative, has to sign the app at the end of every day.

The 2016 federal law that paved the way for EVV – the 21st Century Cures Act – requires that the systems be “minimally burdensome.” But Arkansas, like many other states, appears to have implemented an approach with burdens galore.

As Morell wrote in an 11 June letter to Arkansas DHS: “What took a total of 15 seconds – to sign a timesheet and submit to Palco – now takes many hours; hours that should be given to the client for care.”

EVV vendors promise their solutions will save states money by cutting down on what they claim is pervasive fraud and waste. A 2016 federal report claimed that EVV use across the country would eventually lead to $290m in cost savings over a ten year period, in part by reducing improper billing.

But in practice there is little evidence to suggest fraud is either widespread or significant. Only seven people were charged with fraud in self-directed personal care services in Arkansas in 2020, out of a workforce of more than 4,500, according to data collected by Applied Self-Direction, a Boston-based consultancy. The state secured three convictions, recovering $1,930 total – $643 per case. The EVV system has cost the state $5.7m so far.

And its human costs continue to mount.

Recent complaints to Arkansas’s DHS, acquired through a public records request, illustrate the life-altering consequences of the widespread delays in payment. DHS made the following note about a voicemail the agency received from a home care worker: “She said she cannot buy groceries, her utilities are being shut off and she has an eviction notice.”

In their statement, Palco and the Arkansas DHS say that “the EVV system is working and caregivers are getting paid. There is a very low error rate for submitted claims – just 2 percent.” Since Palco processes approximately 25,000 claims every two weeks, a 2% error rate affects the lives of 500 caregivers each pay period. And a single missed paycheck can quickly spell catastrophe for a low-wage worker.

“There are, to this day, still beneficiaries trying to get their caregivers paid back to early April,” said Trevor Hawkins, staff attorney at Legal Aid of Arkansas, in an email. “There were no accommodations made to cover them while the bugs were worked out.”

Digital timesheet or ankle monitor?

For some, the new system feels like being under house arrest. The EVV app incorporates GPS to verify a home care worker’s location and a feature called “geofencing”. It establishes a maximum distance around a client’s home inside which a care worker is allowed to clock in or out without getting flagged as noncompliant.

“The metal building down there, we know we can go that far,” says Melissa Harville, 46, standing near her front porch in rural Greenbrier, about 40 miles north of Little Rock. “And to the end of the driveway.”

Harville used the EVV app to map out how far away from her home she is allowed to go without triggering an “unauthorized location” alert that will have to be resolved by her agency before she can be paid. In May, Harville and her partner Kevin Hoover, 57, were sitting outside their simple log home as bees buzzed loudly in the early summer sun. She was pointing out the boundaries of what the couple characterize as an invisible dog fence for humans. “It’s like living in a box,” she says.

EVV has eroded both her and Hoover’s autonomy.

LeDanté Walker uses his electronic visit verification app at his home in Hot Springs. Photograph: Rory Doyle/The Guardian

Before the home care agency she works for started using the AuthentiCare app in November 2020, she and Hoover, who has used a manual wheelchair since he lost the use of his legs in 2009, were always on the go. She could take him to therapy, grocery shopping, to see friends. “And now we can’t. You have to be at home to clock in and clock out,” Harville says.

The intentions behind using GPS to verify a home care worker’s location might be to keep workers accountable and clients safe, but the implications are digital borders that undermine the philosophy behind independent living, advocates say.

For more than six decades, disability activists have asserted the right to autonomy over one’s life and the ability to live, work and receive services within the broader community. Geo-fencing in EVV is built on a premise that contradicts this: it assumes that people like Kevin Hoover, who loves to fish, work on cars and play music with his friends, are homebound, not living active and vibrant lives.

The state and Palco say that federal law requires them to log the location at which services are provided, and that the exception notices that caregivers and agencies perceive as errors are simply “informational geofencing messages” and “do not mean that time outside of the home will not be paid.”

But the National Council on Independent Living conducted a survey of home care recipients and their care providers across 36 states in 2020, and found that one-third of respondents said that they “stay at home more often than prior to EVV use, due to fear that geofencing limitations will flag a visit as fraud or cause delay in or loss of provider wages.”

What’s more, because workers and clients tend to be nearby when care services are delivered, “what EVV is doing is unintentionally tracking the recipient of care,” says Kendra Scalia, director of policy for the grassroots campaign Stop EVV.

Karin Willison, disability editor at the digital health blog The Mighty, has argued that “electronic visit verification is the equivalent of putting an ankle monitor on people with disabilities and telling us where we can and can’t go.”

‘We don’t deserve this’

The EVV rollout tells a wider story about misplaced priorities. State Medicaid programs face perennial pressures to patch budget deficits by restricting eligibility, slashing benefits and suppressing worker wages.

In this environment, tech solutions that promise cost savings appear appealing. But the human costs of EVV, whether financial or personal, may well exceed any gains in efficiency.

The Bureau of Labor Statistics projects that home health and personal care aides will be among the fastest growing occupations in the coming years. But on top of low wages, these jobs typically do not come with standard workplace benefits like health insurance, paid sick leave, vacation or disability insurance. This leads to chronic labor shortages, which will only be worsened if care workers feel forced to abandon the profession because of delayed paychecks and digital surveillance.

“Just stop,” says Nancy Morell, the woman who cares for her sister in Eureka Springs. “That app on your phone? It doesn’t guarantee that the work is being done any more than a paper timesheet does. Go back to the way it was before. That will attract people back into the job they signed up for. This job takes people with heart. We don’t deserve this.”

‘They need to listen to people with disabilities’

From the start, disability and labor advocates have been vocal about their concerns, providing input on ways to design systems that are less onerous and invasive. In California, the labor union United Domestic Workers and Disability Rights California collaborated with clients, workers and state officials to design an in-house web portal that did not collect GPS data or require workers to log their hours in real-time.

However, the federal government said that this system would not be compliant, stating that web-based timesheets alone do not provide auditable confirmation of data submitted.

Palco and the Arkansas DHS insist that EVV is inescapable.

But the federal mandate is not inflexible. The state of Virginia chose to exempt live-in caregivers from EVV requirements entirely. Geofencing is optional, as well.

To LeDanté Walker, the lack of consultation with the affected communities feels like contempt. “They need to listen to people with disabilities,” he says. “Ask. The. People.”

This article was supported by the Economic Hardship Reporting Project.