A Real Life Episode of Black Mirror: Welcome to Electronic Visit Verification for Individuals with Disabilities

It is like the science fiction anthology television series called Black Mirror.  A show that targets the unanticipated consequences of new technologies.  It's generally a dark series with disturbing endings.  Except this time it's not science fiction.  It's real.  The nightmare is real.  A new term that every special needs parent in this country will come to know called Electronic Visit Verification (EVV).  A new federally mandated computer-based telephone program that electronically verifies service visits.

A law signed by President Obama in December 2016, with the disguise of bringing new efficiencies, cost savings, and care improvements to personal care and home healthcare sectors.  This law is known as the 21st Century Cures Act (Section 12006) and includes a wide ranger of measures one of which is the implement of Electronic Visit Verification (EVV) to manage personal care services to start no later than January 1, 2019 and all other home healthcare services by January of 2023.  Per Section 12006 (a)(4)(B) of the Cures Act reduction will not be made to the states that can demonstrate good faith efforts to comply with the technology and adopt it or if they encountered "unavoidable delay" with implementing the system.

Any state that is in non-compliance of EVV starting January of 2019, will lose 1% of Medicaid funding.  So States have an incentive to participate and comply.  In the 21st Century Cures Act provides up to 90 percent federal funding for development and implementation of an EVV system and contract, and up to 75 percent of federal funding for operation and maintenance of the system and software.  Funding is uniquely available to all states that operate their own EVV system or have a contractor (i.e. 3rd party businesses operate the system for them).  Colorado has already contracted with Sandata, an EVV software monitoring agency.

So how does EVV work exactly?  Now that's the dark Black Mirror plot.  It's a phone device that will have GPS, it also has video and sound capabilities.  It will track care provider time by a "check in" and a "check out."  Your location will be linked to a home caller ID with a home phone number, and will require Wi-Fi.   Your location will be monitored at all times.  It's a good sell.  They'll tell you all this:

It's non-invasive
It's not at all an invasion of privacy
It' does not go against HIPAA because it's monitoring all home health care in a home setting
It will reduce fraud and prevent providers for billing for time they aren't with the client
It will provide better client care because big brother is watching
It prevents inaccuracy and double billing
It makes sure the care provider is indeed following all stipulated care plans
It gives the State control over overlapping services and unauthorized services and audits of providers can be conducted remotely via submission of their original data

What they aren't telling you:
It has camera and microphone capabilities on software directly invading privacy and 4th amendment rights (in many software cases these features cannot be disabled for care plan visits and logged care, meaning you are recorded the entire time see a video here for demonstration and verify-ability
The excessive amount of money invested and cost in implementing EVV.
The NCIL (National Council of Independent Living) is opposed to this as discriminatory, an undermining of independent living and consumer direction, and and an invasion of privacy of those with disabilities receiving in home care and PCA services.
It is expensive, burdensome and less effective than traditional methods that are currently in place.
It involves random checks
It will restrict access for those with disabilities in the community since they are being monitored at home via GPS
This will drive providers to quit who wish to protect their privacy over providing care to those with disabilities leaving these individuals at a higher risk for institutionalization rather than being cared for in a home setting.
EVV systems put people on house arrest because they are not allowed to leave home as their attendants will not be paid otherwise
It could cause those with disabilities to lose their services if they are even so much a minute late to be scheduled at home for care
You will be tied to a phone if your battery suddenly dies there is no back up plan and you will go without documented services and provider will not be paid and potentially accused of fraud.
EVV will require voice and speech recognition and if a client has difficulties with speech could also be accused of fraud.
EVV may impose significant liability on States in the form of joint employment.  For instance in our state many parents are managed by home health care agencies and our wages are paid through Medicaid to provide in home care to our own children.  The State may be found to be a joint employer under the FSLA.  The new FLSA companionship rule provides: joint employers are required to pay overtime to personal care and home health workers. As a result, States are likely to encounter a significant financial liability for unpaid overtime costs.
EVV inevitably is going to lead to countless class action lawsuits and violates current laws
Personal data is required to be turned over and managed by 3rd party agencies on behalf of the State.  Meaning your social security number is handed over, your home phone number is handed over, your personal email is required, your voice and and in some cases facial recognition required. 

EVV stands to violates every "invasion of privacy" category that exists.  Modern Tort Law includes for categories that fall under the invasion of privacy. 

• Intrusion of solitude: physical or electronic intrusion into one's private quarters
• Public disclosure of private facts: the dissemination of truthful private information which a reasonable person would find objectionable
• False light: the publication of facts which place a person in a false light, even though the facts themselves may not be defamatory
• Appropriation: the unauthorized use of a person's name or likeness to obtain some benefits
  

Critical: " Intrusion upon seclusion occurs when a perpetrator intentionally intrudes, physically, electronically, or otherwise, upon the private space, solitude, or seclusion of a person, or the private affairs or concerns of a person, by use of the perpetrator's physical senses or by electronic device or devices to oversee or overhear the person's private affairs, or by some other form of investigation, examination, or observation intrude upon a person's private matters if the intrusion would be highly offensive to a reasonable person."

Sandata EVV phones one for each child with special needs that resides in the home provided by a family currently using the system.  Isn't that crazy - look at that!

All of this is going to impact our lives in a great way since I am Noah's in-home Certified Nursing Assistant and I am licensed to care for him in home.  A program designed and funded by Medicaid dollars to help keep children like Noah in a home setting and save the State money from needing to be institutionalized for daily care. Meaning that I will be housebound, I will lose all my privacy, Noah will lose his privacy and he deserves that even if he is disabled, his every move will be tracked and monitored.  All under some really fake umbrella of "reducing fraud."  We are the parents.  We are caring for for them on the front lines, there is no way for us to commit fraud as we're completing these tasks and reporting them by electronic signature and can can change nothing once our care plans have been submitted to the agency for verification of accuracy.  Our children would die otherwise if we weren't providing all the care in these care plans.  You are targeting parents who are on the front lines with their children and making things a million times more hard and complicated.  You are sending the message that our children need to monitored and protected against us.  You are an uninvited intrusion into our lives.  Our consent was never given, yet our rights not even considered with the immediate and fast and quiet implementation that our States are keeping very hush and doing their best to keep it off our field of vision.

I'm already participating in an electronic signature of care plans which is done through a health care agency plan however the terms of what we are doing now, compared to EVV are very different.  We are currently under a consumer directed plan, and not agency driven plan like EVV will be.  Under a consumer directed plan the client can go anywhere in the community (i.e. home, employment, to the grocery store, to get lunch etc.) under an Agency plan it's house arrest sometimes sprinkled with community approved sites if you've gotten prior permission.  But let's be clear you aren't likely leaving your home under an agency plan. Under consumer directed plan for instance a client can be out of the home while a caregiver is paid to assist with groceries and laundry.  You can't do that if you're under an agency directed plan that has a GPS on your every blink and requires you to be confined to home for every care plan and all services.  And does the government really need to know the intimate details of my son's incontinent care and bathing? Would you like the government to watch you pee or take a bath?  Would that sound appealing to you? Not to mention I homeschool his little brother - what about his brother's privacy rights?   It's not just Noah in the home.  I'm here, his brother is here, his dad is here.  We all have privacy rights too just because we happen to have a child that is severely disabled does not mean that any of our rights to privacy are automatically voided.

And I meanwhile the real perpetrators of fraud, the very caseworkers, non-profit community centered boards, CEO's and those managing tax payer dollars in Medicaid funded programs are dodging public audits to even show you where the money is all going.  In my state alone, a CCB caught with their hand in the cookie jar, with personal travel expenses, internet services, and Costco memberships, just to name a few.  You can familiarize yourself with that information by clicking this highlighted link and this highlighted link.

So ask yourself this.  Who is really causing fraud to occur.  And who should we really be looking at first?  I say we start at the top and demand a GPS of all caseworkers, what they are doing with their time get them to report where the money is going that doesn't come to our kids.  Because I'd like to know.  Would you like to know?  You should.  Your taxes should be going to the right place and not into the pockets of those managing Medicaid funding.  And if you want to know just how much Colorado is pouring into EVV rather than putting that towards the care of those with disabilities you can find that information here.

Fingers are certainly being pointed in the wrong direction.   Let's put a GPS on them and confine them in their homes.  That sounds just lovely doesn't it?  Turn about should be fair play right?  Let's see how this all feels if the shoe is on the other foot.   And that my friends would be the ultimate plot twist in this real life Black Mirror episode.  Let this GPS surveillance system be implemented for everyone nationwide and see how everyone likes it and let any and all content be submitted to the government to be used however they wish.

A quote that often comes up in the context of new technology and concerns about government surveillance is Benjamin Franklin's words:  "Those who would give up essential Liberty, to purchase a little temporary Safety, deserve neither Liberty nor Safety."

Love,




Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.