EVV violates privacy, sets up the consumer, the (Medicaid) recipient, and the agency for problems and hacking of cell phone networks housing private patient information. And EVV, I suspect is absolutely a HIPAA violation.

The 21st Century Cures Act does NOT define "location". The VA legislature took it upon themselves to not only add a GPS tracking mandate to EVV but also biometrics. The view of those of us who protect our disabled family members and their privacy is that this is outrageous. The mandate is counterproductive and counterintuitive particularly for caregivers who provide care within the family structure. 

Let's look at the implemented mechanism (Public Partnerships) employs and mandates attendants use. The Time4Care app does NOT work - for IOS devices (a large if not dominant part of the cell phone market). 

I have contacted Public Partnerships (PP) more than 60 times over the last 3 months (by email and phone) because of their non-working app. I had a lengthy discussion with their technical help desk. Please also note that I contacted PP many times when they NEVER alerted me to the fact they even had a help desk. There is no help desk number on their website and it appears they don't often explain to the consumer that there is a help desk. 

Time and time again I have asked for a superior to contact me and intervene.  At one point I was told my concerns had been escalated although no one followed up with me. Another time I did speak with a supervisor who promised a follow up so I could send Public Partnerships screenshots of what was happening to our IOS devices. She never sent me her contact information.

Right after the discovery of a technical support help line (December 2, 2019) I spoke with  supervisor  Maria J – who me with the tech help line number 833-204-904

The person I spoke to was “Rob” in a center in AZ.  I asked many questions. "Rob" told me the app corrupts data, he also said, “...It wasn’t developed on a robust platform”  like apps the government uses to secure data.  He might as well have followed his thought that our consumers with disabilities are really just second class citizenry that doesn't really warrant the type of care and protections that securing privacy information warrants from the apps used by the government or in the healthcare industry that are secure. 

Time4care was NOT developed to be EVV compliant – it was developed (according to their tech people) for time entry only and the EVV mandate an after-thought "Rob from Public Partnerships in their AZ center" also told me the app (Time4Care) it was NOT developed to handle IOS systems. 

iPhone which is the #1 smartphone in U.S. market share. Of these, approximately 40 % of users, use an iPhone in the US

Public Partnerships help desk representative "Rob from the AZ center)" told me that they are aware of the problems but that THERE ARE NO PLANS TO FIX THESE ISSUES.
My attendants have to edit times DAILY because the APP (Time4Care) does NOT keep accurate times. Yet, each time and with EACH EDIT  to correct the times and manually fix the times (the app doesn’t track) there is a message threatening services for my neurologically disabled daughter. 

Public Partnership "Rob in the AZ Center" on or around December 2, 2019 let me know there are solutions to their ill-conceived application. He provided two in fact – 1.) we can uninstall and reinstall the app daily or weekly (however that has never worked for us) OR we can use a maintenance third party app to clean the phone files. We can just download some unknown app to clear what "Rob from the AZ Center" referred to as "corrupted data".  Rob then said he couldn’t suggest such an app because unless it was approved by the state, we just have to Google it and take our chances with further IOS problems.

This is absurd and ridiculous by any measure of common sense but beyond this, the mindset is of individuals with disabilities as 2nd Class Citizens who don't warrant protection and privacy. 

Further Thoughts on EVV and the Effect on the Community

EVV threatens decades of the work to create a more independent type of living situation for our daughter and for us – her family. EVV has no place in Personal Care Services or Consumer-Directed Services, or in waiver programs that offer consumer directed-like options. While some states refer to their programs by differing names, consumer directed programs provide our daughter with: choice of service provider; location of service (home or community); scheduling responsibilities; and consumer control. For our daughter this is a life-saving situation keeping her toxic stressors low and allowing us (her family who loves her) a situation where we can keep her safely in her home.

EVV in all forms erodes our rights to provide appropriate care by eliminating the ability for us as her guardians to direct care at her own volition and support her plethora of needs. Her care isn’t just a “preference” it is statutory to her well-being.

EVV does not empower her as a person with a disability, but instead holds us back. When we adopted her she was stripped of her rights, dignity, privacy, and independence. We changed all that for her BUT EVV once again threatens her rights.

The federal EVV mandate, was not created because of the need to eliminate fraud in Medicaid personal care services. EVV is a massive financial giveaway to technology vendors of EVV systems. Our first priority is to care for our daughter, this means if I am up with her in the middle of the night, or if she has a seizure, or an aggressive behavioral trauma response, we do not have the time or inclination to grab a cell phone, log in, to clock in. This is ridiculous for most but more so when the caregivers ALL live with the recipient of services at home.

Virginia also violates our daughter’s dignity and human rights through the use of Global Positioning Systems (GPS) and biometrics. This type of monitoring is a direct and excessive violation of the privacy and potential safety of individuals living with disabilities and more than likely a HIPAA violation.

Given the growing frequency and size of private data breaches, consumers are or will be required to tolerate additional intrusions and burdens under EVV, just to receive the life-sustaining care on which we rely to allow her to live independently with us and avoid institutionalization.  Our daughter is an immigrant who became an American Citizen when we touched down in LAX from China in 2001. Yet she is often treated like a second-class citizen. It took a year, $1100 and the help of the Honorable Tim Kaine’s office and intervention for us to get her certificate of citizenship which should have been presented automatically like all international adoptees that enter on the correct IR3 Visa. We feel threatened by the current immigrant climate and this EVV action is just one more hurdle put in our path.

As an American citizen Bekah is guaranteed Constitutional protection from these types of privacy intrusions, and as her mother and legal guardian I demand that she and other Americans with disabilities have equal protection under the law. I know Dr. Northam as pediatric neurosurgeon, cares about those who due to neurological damage, cannot fair for themselves.

GPS and biometrics have a chilling effect on the independent providers and the entire personal care assistant network. It is almost impossible for employers of record (EOR) who are often family members to find adequate attendants. EVV further shrinks the chronically inadequate pool of available employees.

Attendants work for minimum wage, often under stressful behavioral conditions. Attendants are reluctant to be geo-located during their work day, to be biometrically identified, or to take a job requiring technology skills without increased compensation. Quality care is what is at risk here.  Some employees are cautioning consumers they will leave once subjected to EVV.

Potential workers are going elsewhere when they learn that GPS or biometrics are required. Individuals with disabilities across the country are facing increased provider shortages because states are not prohibited from utilizing GPS and biometric features under EVV.

People with disabilities have a right to transparency and access to any private data collected. The EVV industry is not forthcoming about the type of data it collects and stores. Data compromise and loss prevention plans must include immediate notification of any breaches to consumers and providers. Threats to identity protection and digital privacy should be given the highest accountability priority.

People with disabilities have the right to control their lives.

If individuals are to make informed decisions, it’s imperative that states create and implement comprehensive outreach and education to consumers and providers about EVV choice options, such as web portals.