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Medicaid law forcing caregivers to be tracked by GPS inspires privacy backlash from Colorado’s disabled community

The aim is to reduce Medicaid fraud by requiring therapists, respite workers and nurses to log in and verify their location when they visit someone’s home to provide care. But backlash, especially from the parents of children with disabilities, has been fierce.

The Sandata app uses the location function to track in-home service providers. New federal law aimed at reducing Medicaid fraud will require workers to digitally log in to verify their location. (Eric Lubbers, The Colorado Sun)
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“We’re disabled, not criminals!” shouts one petition. 

In impassioned, monthly conversations over the last year, members of Colorado’s disabilities community have implored state officials to temper a new federal requirement to track caregivers via GPS. 

The point of the federal law is to reduce Medicaid fraud by requiring therapists, respite workers and nurses to log in and verify their location when they visit someone’s home to provide care. But backlash in Colorado and nationwide, especially from the parents of children with disabilities, has been fierce.

The law requires Medicaid, the government insurance program for people who are low-income or have disabilities, to use Electronic Visit Verification, or EVV. It was set to take effect in January, but Colorado received an extension so officials at the state Medicaid department could work through how best to enforce the federal mandate.

The top item on Colorado’s agenda is to figure out how to exempt live-in caregivers — the most outspoken critics of electronic verification. 

For children with disabilities, their official caregivers are often their parents.

Colorado Springs residents Jim and Pattie Ruwwe have two children with severe disabilities who keep them busy from 5 a.m. until bedtime — bathing, diaper-changing and feeding through G-tubes. 

The kids receive Medicaid funding, and instead of hiring outside help, their mom is the children’s official caregiver. Pattie is paid an hourly wage as an employee for a service agency that contracts with Medicaid. 

Under the new rules, Pattie would have to log in to a GPS-tracking system at multiple points throughout the day — every time she completes any child care task in her home. Pattie already does mountains of daily bookkeeping to account for her time, the family said, but the new rules would require her to digitally check in to prove she is at her house caring for the children.

“My gripe is that it puts the focus not on caring for the child — it’s focusing on logging in and out at the right time,” said Jim Ruwwe, one of the parents who have attended various stakeholder meetings during the last year organized by the state Department of Health Care Policy and Financing. “We are here taking care of the kids because, guess what? They live with us!”

Under the current system, Pattie typically logs in once a day and checks off all of the nurse-required tasks she has completed. On days when she’s exhausted, or when one of the kids is having a meltdown, she can postpone the paperwork until the next day. 

The Ruwwes rarely leave home, but if they visit the park or go to a doctor’s appointment, they would have to bring their iPad so the Medicaid system could verify their location. 

The Ruwwes and other similar families are likely to end up exempt from the federal requirement by the time Colorado rolls out its system late next summer. But here is the catch: the agencies that employ caregivers, including moms like Pattie, could still impose that requirement on their employees. 

After months of meetings, the state Medicaid department is acutely aware of the concerns about electronic verification, especially those from the disabilities community, said Colin Laughlin, the department’s benefits and services management division director.

Electronic verification “is not a new concept by any means,” said Laughlin, noting that some of Colorado’s in-home service agencies have used it for their employees for years, before it was the subject of federal law.

The EVV requirement is part of the Cures Act, which was passed by Congress three years ago. The electronic verification section constitutes three pages of a 312-page act intended to speed up development of medical products. 

Guidance from the federal law and the Centers for Medicare and Medicaid has been vague, but the federal agency made clear last summer that it is up to states to decide whether to exempt live-in caregivers. 

“We’ve really tried to be as flexible as possible,” Laughlin said. 

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About 38 providers — out of about 1,500 statewide — began using the EVV system in September to test it out ahead of full compliance late next summer. “We want a really long runway for people to figure this out,” Laughlin said. “If we were to flip a switch right now it would not work as intended.

“It’s certainly going to be a crazy couple of months.” 

When there is human error, or a problem with connectivity, particularly in rural parts of Colorado, caregivers or therapists will be able to call in to the system later to explain the problem and avoid losing payment, he said.

The state system — which is free for providers to use — does not “track” a person’s routes and follow them throughout the day, Laughlin said. It captures a time-stamped location when the service begins and when it ends. 

Also, the data collected is secure and kept in compliance with federal laws requiring privacy of medical information, he said.

“It may not have been the most popular thing in the world,” but the state is working through the law with as much flexibility as allowed, Laughlin said.

The EVV requirement was such a last-minute addition to the federal act that the disabilities community was hardly paying attention, said Alison Barkoff, director of advocacy at the Center for Public Representation, a national disability rights organization. 

The new rule received almost no attention for more than a year, when the federal Centers for Medicare and Medicaid Services released guidelines on how electronic verification would work. 

“When the guidelines came out, it was ‘Oh my goodness, this is huge and this is really concerning,’” Barkoff said. 

Under the law, the technology must capture the precise time and date the service begins and ends and the location of where it’s taking place. States that do not implement the law will face a reduction in federal funding.

The state legislature set aside funding in 2017 so the Medicaid department could set up an electronic verification system. The cost of implementation is about $1.46 million, with most of that coming from federal funds. Colorado hired Sandata, a New York-based technology company, to build the system. 

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The Colorado Cross-Disability Coalition, which opposes the law, is particularly concerned about rural parts of the state where internet access is spotty. It’s also worried that Colorado will lose some of its in-home service providers because they are uncomfortable with the “government having direct access to their location,” said Jose Torres-Vega, the coalition’s information technology manager.

Those concerns will remain even if the state exempts in-home caregivers, he said.

Stacy Warden, who has an 11-year-old son named Noah with cerebral palsy, is concerned that therapists and others who come to her home to help care for her son will no longer want the job thanks to the new requirements. One of her son’s caregivers is his grandmother, who serves as a respite provider a few hours at a time. 

Warden worries her mom would not want to take Noah out for dinner because “they are GPS-ing and he’s not home,” she said. 

“It’s super creepy,” said Warden, who has tried to contact Colorado’s U.S. representatives and senators for help. “We feel it’s a huge invasion of our privacy. And our fear is that Sandata is capturing way more information than we know about.”

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