Imagine feeling like you have a monitor strapped to your ankle because you need to use Medicaid services to care for your medically fragile child. Imagine being forced to keep a device in your home that puts you under surveillance because you have a disability and require a personal care attendant. This is now the reality for tens of thousands, soon to be millions of people in the United States.
“So what?” you might think at first. “Everyone’s being tracked.” We may choose phones and technology that track us. However, we can control the settings, and turn off location services or not use apps that invade our privacy. What if you had no choice but to be tracked and you didn’t have any control of the settings? What if your independence was the subject of government scrutiny?
The 21st Century Cures Act was passed in 2016. This law provided lots of money for research for rare conditions, the opioid crisis and mental health care. It also contained a small section that stated the government must utilize electronic visit verification for people with disabilities and their caregivers who receive personal care services through Medicaid. This law has been interpreted many different ways by the Center for Medicare and Medicaid Services (CMS). Their interpretations of the law keep changing the more time that passes.
Electronic visit verification uses a smartphone or 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. If a caregiver is not in the “expected” location (a person’s home) when clocking in or out, some systems flag the visit for further scrutiny, thus interfering with the disabled client’s freedom to go out in the community and travel.
Disability advocates from around the nation have been fighting this law since before it even passed. Meanwhile technology vendors have invested time in misrepresenting the law’s terms, ideas and values. What was simply meant to be a time clock has turned into a gross invasion of privacy in some states, including and especially the state of Ohio, where I live.
Many families once believed EVV would be a good thing. They thought it would be a way to track their providers’ hours and reduce the paperwork that is required. It hasn’t done either for anyone in Ohio. It has left people in fear of losing care, caused many people to lose good providers and has put people at risk of being institutionalized.
Many home health aides working in the field are not technically savvy; they may have limited education or may not be fluent in English. They can’t be expected to learn how to use this technology overnight. In addition, these devices and systems take away from the quality care that can be given by aides and nurses. EVV is far more than a time clock; it puts a person under surveillance in a way that goes beyond clocking in and out for a shift.
Ohio was the first state to activate GPS, geofencing and biometrics in their EVV systems. The situation in Ohio is more complex than any other state. They offer four options for EVV but don’t advertise them. In fact, it is difficult to be able to use an alternative EVV method. State Medicaid officials are working very hard to force people to use the GPS tracking device despite the Ohio Administrative Code’s wording of the law, and failing to tell consumers they have other options. Case managers are being poorly trained and are even unaware of the information available to them on the Ohio Medicaid website. It shouldn’t be the consumer’s job to educate their case managers, it should be the state’s job to properly train them.
From poor training to ADA violations and discrimination, Ohio has massive issues. Consumers who have cognitive disabilities, hearing impairments or visual impairments struggle to verify services under the new EVV systems. People who receive care are required to voice verify, with no alternatives offered if they cannot speak or hear the prompts over the phone. They can have a family member verify for them, but what if they live alone or no one else is there when caregivers are clocking in and out? Their caregivers could be denied payment if the consumer or a family member cannot voice verify. The only people exempt from the voice verification process are those who have their waiver provided through the Ohio Board of Developmental Disabilities — but that waiver does not cover everyone who is unable to voice verify.
Ohio Medicaid has gone as far as deceiving consumers, providers and families about what EVV actually is. After advocates pressed them in Phase I they they finally acknowledged the microphone does in fact work on the device. They claim it only works during voice verification for clocking in and out. They still deny the fact that voice verification is a biometric and the cameras on the device do work.
Many consumers and providers around the state are concerned about their privacy. Michael Stanley, a consumer from Ohio states, “my EVV device doesn’t always work and I was in shock when I found out these devices were more complicated than described in the Medicaid letter sent to me before receiving the device.”
Stanley is concerned about his privacy like many other Ohioans. He doesn’t want his conversations and activities to be available for government scrutiny. He puts his device in the refrigerator when it is not in use.
Many other people around Ohio believe EVV is a gross invasion of privacy. One care provider from Southern Ohio (who wishes to remain anonymous to respect the privacy of her client) is deeply concerned about the impact of EVV on her client’s well-being. EVV has caused her client so much harm psychologically and emotionally that her client has had to be hospitalized for mental health reasons. The provider is now using an EVV app on her own phone to try to help problem solve. When I showed her the permissions for the app, it made her very concerned about the app company being able to access other information on her phone, such as her bank account.
Ohio Medicaid hasn’t been clear on how the device works, and it’s like pulling teeth to get clear information on alternative methods of electronic visit verification that don’t involve GPS and biometrics. Some consumers are battling to get their method of choice put into their service plans. Some case managers and SSAs have ignored their clients despite numerous emails and phone calls. We believe some of this is because of the lack of training about EVV. One mother from Cleveland, Ohio has made several attempts to get telephonic verification written in her son’s care plan, but has had no response from her case manager under Caresource.
I have had some struggles of my own with EVV. Despite Medicaid’s claims to have trained case managers, my case manager didn’t know how to put the EVV system I requested in the care plan or where to put it. I had to give him word-for-word instructions for what to put in my care plan. I chose manual visit verification because it does not violate my privacy with GPS or biometrics. My providers were supposed to be compliance by August 5, 2019. We are over a week late and they still can’t get access to manual visit verification or any other alternative method because of challenges working with Ohio Medicaid and Sandata Technologies.
In addition, I found it problematic when the manual visit verification portal was asking my aides to enter my Social Security number. Requiring my Social Security number puts me at risk for identity theft if they were to have a data breach. I think my Medicaid number should be enough to verify my visits.
People are trying to be in compliance with a system they are forced to use. It is leaving providers worried about their pay, consumers worried about the loss of care, affecting how people receive their care and violating their rights to privacy.
President Trump signed a bill last year that delayed EVV for one year. This time gave technology vendors the opportunity to develop more advanced programs, add surveillance to EVV and form the National EVV Association. This also gave them time to convince CMS of a different interpretation of the law than the one given in the first two years after its passage.
I have reached out to Disability Rights Ohio for help with these issues. I encourage others in my position to do the same. Disability Rights Ohio hasn’t made any statements since their 2018 letters to Ohio Medicaid about electronic visit verification, but they continue to collect stories about the impact.
The National Council on Independent Living has released a survey for consumers, providers and families to fill out about their experience with EVV. NCIL has formed a task force and steering committee with members from all across the United States to work on issues around EVV. They want to hear stories about the effect EVV is having on people.
I am involved in advocacy efforts on many levels. Stop EVV, a grassroots organization I founded with Kendra Scalia from New York is also taking feedback from people on their experiences. We have been engaged with stakeholders across the country on this pressing issue.
Stop EVV encourages people to get involved with advocacy around their individual states. There is a public Facebook group for anyone that wants to know more about EVV or have discussion with others about it.
We also encourage people to sign our national petition to help stop GPS tracking, biometrics and EVV. We have over 5,000 signatures and a long way to go.
Ohioans are not alone with EVV. CMS just released new guidelines about EVV that make matters worse. Since CMS has left the guidance for EVV wide open, every state has a different model for EVV. This is going to be a national nightmare eventually. We already have a critical shortage of home care workers. It will only get worse with EVV. We need anyone who can to stand up for people with disabilities and their caregivers, and speak up about this crisis in home care.