When government interprets the law, it often takes liberties that satisfy its own needs even if they aren't defined in legislation. This is done through guidance, protocols, regulations, and other avenues. Often, it's done to be helpful but occasionally the consequences can be tragic and, thus, unlawful.
An emerging example of congressional intent gone awry is the implementation of Electronic Visit Verification (EVV). Specifically, in the 21st-Century Cures Act passed in 2016, Section 12006 Electronic Visit Verification is very clear about what is required and that it is to be” minimally burdensome” it also requires that “it takes into account existing best practices and electronic visit verification in the state.”
The law requires that six data elements be collected during each visit of a personal care services worker, and they are:
1. type of service performed;
2. the individual receiving the services;
3. the date of the service;
4. the location of service delivery;
5. the individual providing the service and
6. the time the service begins and ends
As States began rolling out EVV systems they encountered fierce resistance from non-agency personal care services beneficiaries, so the Centers for Medicare and Medicaid Services (CMS) stepped in with guidance to states on how to implement EVV first in 2018 and then again in 2019. In the first guidance, there was no requirement that states had to use Global Positioning Systems (GPS) in the fourth requirement requiring location of service delivery.
California, which has approximately 400,000 personal care services beneficiaries was and continues to use a web-based portal that both individuals receiving the service and those providing them can log into and it meets all the data elements required by law. CMS didn't think so because it doesn’t use GPS for location; their portal simply has a drop-down menu that gives the options of home, community, or both. CMS failed the legal requirement to “take into account existing best practices.” In 2019 they issued additional guidance stating that “web-based” electronic timesheets using dual verification” are not permissible. California was declared non-compliant overnight.
The CMS 2019 guidance sealed the deal for requiring GPS and infringing on the privacy of over 4 million personal care services workers, and by default, beneficiaries with disabilities. In the disability community, California EVV is the gold standard because it captures the data required by Congress yet still allows for a manageable system and maximum consumer control without compromising our right to privacy.
EVV must become a lightning rod to spark a revolt against the constant ”medicalization” and loss of control and privacy in our lives. Independent living is being kicked to the curb by managed care titans, health insurance companies, pharmaceutical giants, and even our own government. If this slow but steady erosion of our civil rights is allowed to continue unchecked, we’ll be in too deep to crawl out. It is not uncommon for people with disabilities who were living independently in the community with personal care services prior to the requirements of EVV to be defaulting into nursing homes because we can’t find workers who agree to be tracked by satellite.
We celebrated the 31st anniversary of ADA last month yet our civil rights and independence are under siege. The Olmstead decision was made 22 years ago. How much sense does it make to fight to get out of a nursing home and live in the community only to find that you can't get workers to keep you out because they refuse to be tracked by satellite like a criminal. It seems like the legal community is sitting by idly and waiting for more casualties to mount before they rise to the level of a class action Olmstead lawsuit.
Stop waiting and start acting, our lives and independence are at stake. One person is one too many!