How This 'Anti-Fraud' Device Violates the Rights of People With Disabilities
With advances in technology, doctors are moving to e-visits and tele-health visits. The scope of medicine is changing. The home care industry has now adopted a new method of documenting work hours — electronic visit verification. Electronic visit verification uses a smartphone-type device to record the dates and times personal care attendants visit Medicaid recipients; some systems use GPS tracking and store biometric data from caregivers and people with disabilities. Some think it’s an invasion of privacy, while others view it as an anti-fraud measure.
These changes aren’t easy for many seniors and people with disabilities, especially those with auditory, cognitive and visual disabilities. While the paper and pen method of filling out timesheets worked for many, this new technology discriminates against people with different types of disabilities. Disability rights groups and advocates around the nation are now speaking out about the problems with electronic visit verification.
Electronic visit verification was passed as part of the 21st Century Cures Act in 2016 — a bill created to fund information technology companies, medical device manufacturers and pharmaceutical companies. This bill promoted many advances in healthcare, primarily mental health. However, it also included a provision that requires all states to have electronic visit verification in place for Medicaid home care services by 2019.
Testimony and statistics around this bill included stories about issues that are impossible for electronic visit verification to solve. This tool is like a time clock for providers. It cannot fix issues with provider theft, poor quality of care, and other challenges to care. While these were some of the examples of how electronic visit verification would supposedly fix the problems with home care, the only thing EVV can actually do is keep track of whether a provider is present when they are claiming to have worked.
Fraud statistics cited in hearings for the 21st Century Cures Act were later found to be invalid. The GAO report of fraud statistics from the Centers for Medicare and Medicare services only had reports from 35 out of 50 states, and did not include managed care.
I believe this law was passed based on assumptions, rather than the needs of the community that is forced to use the new systems. The law has guidelines for implementation, but many states have chosen to ignore the requirements. Disability rights activists from around the nation are advocating for a fair input process with stakeholders. In some states, including Ohio, the first notification of EVV was a letter in the mail less than three weeks before implementation, or a device showing up on their doorstep. There was a stakeholder process; however Ohio chose to exclude people receiving personal care services from this process, which violates the federal guidelines for implementation.
Disability Rights Ohio made a public comment in September 2017. After a push from families, consumers, and disability advocates in December and January, DRO sent two letters to the Ohio Department of Medicaid asking them to halt the implementation of electronic visit verification. They cited many privacy concerns, loss of providers, and challenges to the EVV implementation process. Ohio still went forward with implementation on January 8, 2018 as planned.
The 21st Century Cures Act states, “the implementation process must be ‘minimally burdensome’ as well as the process for implementation must include a fair input process with beneficiaries, family caregivers and stakeholders.” It remains in question why Ohio chose to exclude beneficiaries and family members from the EVV stakeholder process.
In other states such as California, disability advocates are pushing for a fair stakeholder process. Some have asked for listening sessions for the public. In Massachusetts they held listening sessions. It created an uproar from the public. This allowed for a temporary stay of EVV implementation. Advocates in California are hoping they can have the same thing happen in their state. SEIU and UDW, unions of health care workers in California, have also opposed electronic visit verification.
Many people are opposed to electronic visit verification due to privacy issues, health concerns, and the barriers EVV creates within home care. Many consumers receive services outside their homes and believe EVV is similar to an ankle monitor someone might wear on parole. The device used in Ohio looks like a military grade cell phone. It has a two-sided camera, GPS, and a microphone. While the Ohio Department of Medicaid claims that the cameras are not active, many consumers have proved otherwise. One mother posted a video of her EVV device snapping a photo of her. Some consumers have also reported agencies asking consumers to take photos with the devices. Some agencies are adding clauses to the paperwork that allow for them to record or film care due to technology changes with electronic visit verification.
The GPS is used when a provider signs in and out for each shift. The device requires an exception to be added each time the consumer is more than 1000 feet from their residence. This has created challenges for those who receive services outside of their home. People are in an uproar because they don’t think the state should have the right to know their every move. Ohio Department of Medicaid claims the GPS only works when the provider signs in and out. Some still have their doubts.
At first, the state claimed the microphone was not active. However, since the device requires voice verification for services, it was found that it is activated. Consumers have raised concerns about the inability to voice verify services. With minors and families where there are parent providers, there isn’t always a second person to verify services who can be available when there are shift changes. This has put a strain on families where one parent works outside the home. It’s also put a strain on consumers who live alone and are unable to voice verify in the system due to inability to speak, auditory, cognitive and/or visual disabilities. Any program that receives federal funding must comply with the Americans With Disabilities Act. No form of electronic visit verification currently in use complies.
Some states have looked at biometrics in the use of electronic visit verification. Each state has varying laws around biometrics. Families have concerns about the use of biometrics with underage service recipients, and adults are concerned about the privacy of their data. Considering that minors cannot verify services, it would force another family member to have their data put into a system that might be at risk for data breaches. Health information has already been compromised via electronic visit verification in Ohio. Families reported on social media that they had access to strangers’ health information and contact information on the Sandata portal. During the first month of electronic visit verification in Ohio, many providers spent an average of two to four hours on hold trying to get help with the EVV system. It hasn’t been easy for many.
When the 21st Cures Act was going through hearings for electronic visit verification, many of the rules of HIPAA changed. While disability rights advocates are trying to find a way to stop electronic visit verification, there are challenges due to the fact that HIPAA changed to adapt to the legislation. The National Council for Independent Living opposed electronic visit verification before the law was even passed. They collected stories from people around the nation who have been impacted by EVV. They recently formed a national task force to continue to fight the battle against EVV.
I helped found the grassroots organization Stop EVV. People from around the nation have built a community to discuss and oppose electronic visit verification. The organization has worked hard to educate the public about EVV and also organize advocates to take further action in advocating and opposing the use of electronic visit verification in home care.
Several news outlets have also covered electronic visit verification. In Ohio the Dayton Daily News and the Columbus Dispatch both reported on it, and it has been a hot topic on social media. The Mighty has previously covered the issues surrounding electronic visit verification, and also featured a story from a mother whose movements are now tracked because she cares for her young daughter with disabilities.
The following petitions are active — please sign if you oppose the use of electronic visit verification.
Helpful Resources
CMS Power Point Presentation on Electronic Visit Verification
Citizens Against EVV Facebook Group — join the fight
Advocates around the nation have decided they are going to do whatever it takes to oppose electronic visit verification on both the state and national level. Are you with us?
Alicia Hopkins is an author, artist and disabled advocate from Ohio. She has four books. She has been published on numerous platforms for art and poetry around accessibility in the arts, electronic visit verification and the caregiver crisis in Ohio. She has painted 25 feet of art on the Ohio Direct Support Crisis over the last two years. She uses her art to engage in public testimony and advocacy.
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