State’s new anti-fraud devices have the disabled worried about snooping

Providers’ comings and goings are recorded — even when they accompany clients to the store.

New technology used by the state to cut down on Medicaid fraud has disabled Ohioans complaining about a violation of their privacy.

Ohio Medicaid's Electronic Visit Verification system was launched Jan. 8 as the state's answer to a new federal provision in the 21st Century Cures Act. The law requires each state to implement a system for verifying when and where certain home health workers — including personal care attendants who help the disabled live independently — provide Medicaid-covered services.

But the EVV system’s smart-phone-like devices, which include Global Positioning System monitoring capability, have advocates and the disabled crying foul. Aides log their comings and goings into the devices, which stay with the Medicaid client at all times — even, for example, when a provider accompanies them to the grocery store. Each device has a camera, a microphone and GPS tracking.

"Electronic visit verification seems to operate under the assumption that people with disabilities have a very limited existence," Karin Willison, disability editor at digital health blog site The Mighty, said in a recent blog post. "The government should not have the right to know where I am at all times just because I have a disability… 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."

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Stephanie Milas of Tipp City said the device she was given shut down after about 15 minutes and her providers had to spend time each visit with tech support trying to get the unit to work. She’s opted to use a different system where visits are verified by phone.

Milas, who has spinal muscular atrophy and gets round-the-clock care through Medicaid, said she is most upset about the monitoring capabilities.

“It’s a violation of my civil rights,” she said.

Costly problem

The federal Cures Act, passed in 2016, is meant to streamline the approval of new medications and medical devices. But an anti-fraud measure was also included, requiring each state to implement an EVV system for personal care services by January of 2019 and for home health care services by 2023.

Any state that fails to comply with the federal regulations is subject to a reduction in Medicaid funding, according to Ohio Medicaid spokeswoman Brittany Warner.

The EVV system is intended to cut down on Medicaid billing fraud through a system that electronically records when providers come and go. Logging visits that don’t happen or fudging on times is a costly problem in Ohio and throughout the country.

Home health is a target for the state’s anti-fraud efforts. Of the 474 investigations opened by the Ohio Medicaid Fraud Control Unit in fiscal year 2017, more than half involved personal care attendants or home health agencies.

The Medicaid fraud unit recovered more than $38 million in restitution and civil penalties from those convicted of fraud last year.

Ohio's EVV system is administered by the New York-based company Sandata through a seven-year, $66.5 million contract.

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Complaints soon began pouring in, including that the devices did not work properly and the wrong patient’s information was accessible through the online portal. Some clients wondered if the device’s cameras and microphones were recording inside their homes.

Ohio Medicaid said the cameras are not functional and nothing is being recorded.

A spokesman for Sandata referred all questions to Ohio Medicaid.

Warner said her department and the company are working to address issues like slow logins and malfunctioning devices and call centers have increased their staffing to help providers with login problems. During the first six months of the program, providers and individuals will not be penalized if data is not properly logged, she said.

More than 95,000 visits were logged statewide between Jan. 8 and Jan. 26, Warner said.

‘Hardly a time clock’

Advocates for the disabled said they do not have a problem with increased accountability for providers to avoid fraud, and many said they would not object to a smartphone app where providers are required to record visits in real time.

But the EVV devices, they say, introduce too many privacy issues.

“This is hardly a time clock,” Alicia Hopkins, a Medicaid client and advocate in Stow, Ohio, said of the camera, microphone and GPS tracking capabilities. She started a petition asking Attorney General Mike DeWine and Gov. John Kasich to halt the implementation of the EVV devices.

“We are disabled but we are not criminals and shouldn’t be treated as such,” she says in the petition, which includes a logo that says BIG BROTHER IS WATCHING YOU. As of last week, the petition included 2,992 names.

Ohio plans to issue an EVV device to anyone using certain Medicaid services, including home health aides, private duty nursing, personal care aides or home care attendants. Some people are included in later phases of the roll-out and haven’t yet gotten one.

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According to the Ohio Medicaid website, clients must keep the device charged in their home. The provider must sign in as they arrive for their visit and sign out when they leave. The client then verifies whether the information is correct.

The same ritual must be followed for clients who have services that begin or end outside of the home, such as needing help to attend school, go to work or to go shopping. Willison, who lives in Indiana but is documenting the rollout of Ohio’s program, said she would object to a device that has a record of wherever she goes.

“I can’t go anywhere for more than a few hours without a (personal care assistant), and I lead a busy, active life,” she said.

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‘I don’t want to live in a nursing home’

Some disability advocates are afraid the system will cause more providers to quit — exacerbating a turnover problem that is already troublesome in the home health care field.

Milas’s mom, Carrie Botticher, said the time-keeping process is laborious and takes time away from what the providers are there to do: care for their clients.

“It’s one more thing that has created tension for people who are independent providers,” said Michael Kirkman, executive director of Disability Rights Ohio. “A lot of them are feeling like they can’t do this work anymore.”

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Hopkins, who has a nervous system disorder known as Dysautonomia and uses a wheelchair, said turnover gets too bad, people like her won’t get the services they need at home.

“Without the care I could end up in a nursing home,” she said. “I don’t want to live in a nursing home.”

‘Poor job of messaging’

Disability Rights Ohio sent multiple letters to the state last year expressing concerns about the EVV system. Among the complaints: Disabled Ohioans weren’t consulted.

“Nowhere is the client mentioned,” Kirkman said of the federal law mandating EVV.

The group is investigating reports that some cameras have been activated. Ohio, it says, is the only state that uses geo-locating technology in its EVV system.

The groups also say Ohio did a poor job of messaging to the disability community. Providers were trained on how to use the EVV devices, they say, but many clients were not. Some clients say they only found out about the change when they received a letter in the mail just days before the device arrived on their doorstep.

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Maria Matzik, community outreach specialist at the Dayton Access Center for Independent Living, said Medicaid officials told her they sent out letters during the first week of December, roughly a month before the system went live.

Ohio Medicaid said it would welcome input from individuals at its upcoming stakeholder meetings. To get access to the web conference sessions contact Julie Evers at or 614-752-3618.

Some individuals have struggled to operate the system because of their disability.

Renee Toth of Kent worries about her 13-year-old son Johnny. He’s non-verbal and can’t physically write his signature. Confirming that his aides have checked in and out on the device or on the phone isn’t possible for him. And if his providers switch shifts while he is at school or in an extracurricular activity, his mom isn’t always available to step in. Some shift changes for those who need round-the-clock care also come in the middle of the night, advocates point out, which might require waking a client up to verify that a new provider has arrived.

The privacy issues also worry Toth.

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“They clearly did not think this through well,” she said.

Medicaid’s guide to EVV says any time a client can’t verify a visit via the device, they can use a telephone or a paper log as a backup.

Warner said the GPS function is used only to ensure that people receive the medical services they need.

“The device only logs the location coordinates at the precise times a provider logs the beginning of the visit and the end of services,” she said. “No other location information or data is received.”


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