One of the primary motivations behind including EVV in the 21st-Century Cures act was based on the myth that there's rampant fraud in the personal care services program nationally. The Congressional Budget Office (CBO) in 2016 projected that $ 290 million would be saved over 10 years if EVV was included in the bill and this projected savings was a “pay for”. It is widely reported that the EVV industry was lobbying for its inclusion with the position that EVV is the best way to stop fraud, waste, and abuse in personal care services (PCS). It's more than a coincidence that it would also launch a requirement to purchase and maintain their software in practically every state.

Despite national disability and privacy organizations vigorously protesting EVV, the bill passed and included it. However, the law simply requires that location is one of the data elements that needs to be gathered and reported by states. It doesn’t specify or mention the use of Global Positioning Systems (GPS) or biometrics like facial or voice recognition.

It was CMS that required its use through guidance. The EVV industry was already selling their monitoring systems of personal care services workers to state Medicaid agencies with the promise that they would meet CMS guidance and, if used, would be complying and not trigger Federal Medicaid Assistance Percentage (FMAP) penalties imposed by the legislation for noncompliant states.

Disability rights advocates, unions, state Medicaid agencies, disability trade organizations, personal care services workers and many more affected people were stunned. In the case of California’s IHSS program, the largest self directed (the disabled person is the employer, not an agency) program in the country with 400,000 disabled personal care services consumer employers who were successfully using a web-based portal reporting system prior to Cures, it meant that the state had to discontinue this very effective tool to comply and to not be penalized with cuts in FMAP.

Once issued, this CMS guidance forced people with disabilities and their personal care services workers to give up their right to privacy. The EVV industry sells states canned programs that use GPS and biometrics that track the physical location of the workers and by default the people with disabilities who employ them. EVV is the only federal program that tracks recipients of service; the other being the Bureau of Prisons home confinement program.

“EVV is the only federal program that tracks recipients of service; the other being the Bureau of Prisons home confinement program”

An unintended consequence has been a severe exacerbation of the personal care services workforce shortage. EVV systems are subject to state modifications and developed to easily incorporate them and has resulted in onerous and unnecessary practices in several states that make it extremely difficult to navigate and use location requirements daily. Some states use “geofencing” that sets boundaries that disabled consumer employers are restricted to outside of the home and if their personal care services worker’s GPS marker is detected beyond the preset boundaries, it triggers an “exception” that then leads to a review process by the state/ vendor that often holds up payment to the worker. It's easy to understand why workers are reluctant to join this workforce and generally be paid less than fast food chains and get benefits that are not offered by PCS and not be subject to surveillance.

As EVV continues to go live in the states, an alarming number of problems reported by self-directed PCS consumer employers are arising that undermine control of their employees and make it practically impossible to recruit qualified workers to meet their needs. Thousands of people with disabilities across the country are being forced to manage their personal care with significantly less assistance than they actually need due to the imposed restrictions and worker shortages caused by EVV. Many are forced back into nursing homes which is a civil rights violation under the ADA Olmstead decision.

This poor public policy is because of the alleged fraud, waste and abuse projected in the original EVV section of the 21st-Century Cures Act. In 2022 Applied Self Direction, a non-partisan technical assistance organization analyzed General Accounting Office (GAO) data reported by National Medicaid Fraud Control Units (MFCU) and found that the actual numbers in the self-directed PCS programs are at an annual rate of .0002% of fraud convictions that totals $6,065,610.The federal annual Medicaid expenditures for self directed programs is approximately $100 billion. The incidence of fraud, waste and abuse in self-directed PCS is negligible and is far exceeded by the amount of Medicaid HCBS money spent on EVV systems purchases and maintenance. For example, in Texas, from FY 2017 to FY 2021 the state spent just over $1.3 billion to implement EVV. This information was obtained through a FOIA request, and the shocking amount of money spent to date is a bellwether of what has been spent in the 35 other states that have implemented EVV. Suffice it to say, the EVV industry that provides the software, training and maintenance paid for by Medicaid is thriving and policymakers must address the very clear data that shows the expense of EVV far outweighs any benefits derived.

“The incidence of fraud, waste and abuse in self-directed PCS is negligible  and is far exceeded by the amount of Medicaid HCBS money spent on  EVV systems purchases and maintenance”

PCS employers and workers and their allies realized that the only way they could beat back the dangerous effects of the 21st-Century Cures act was to push for legislative change in Cures 2.0 filed by representatives DeGette and Upton in 2021. As a result, section 409 prohibits the use of GPS and biometrics in PCS. It's important to understand that PCS includes home care agencies as well as self-directed programs. Home care agencies have been using GPS and biometrics as part of their business model for many years prior to the original 2016 legislation. Agencies that employ PCS workers want to continue monitoring their employees, but the vast majority of self-directed PCS consumer employers do not.

The power and influence of the home care industry could kill the EVV protections that self-directed consumer employers have fought hard for over the past five years. Anticipating this, four national organizations led by the National EVV Consumer Employer Coalition and ADvancing States met several times to reach consensus on compromise legislative language in Cures 2.0 that separated self-directed PCS from home care agencies. The language gives states the flexibility they need to properly implement EVV but prohibits the use of GPS and biometrics in self-directed PCS programs. Thus, home care would not be subject to this provision and can continue using employee surveillance.

The hope is that both groups can work together to forge a good faith relationship that will embrace the compromise legislation and encourage the congressional Energy & Commerce Committee to adopt it. It's a sensible solution that allows for the protection of privacy and consumer employer choice and hopefully blunts the effects of worker shortages for self directed programs and, concurrently, provides for the continued use of GPS and biometrics in the home care industry.

The most important outcome that outweighs any differences is that both groups can continue to work together to keep people with disabilities and elders out of nursing homes and living with dignity in the community. The success of not only this bill but future legislation and policies and programs hinges on how well the disability and elder communities and the programs that serve them can find common ground to keep and maintain independent living and aging in place values on the forefront.