On December 13, 2016, President Obama signed the 21st Century Cures Act into law. This comprehensive law aims to speed up drug approvals, fund research, and purportedly help people with psychiatric disabilities through the provision of increased mental health services. Although lauded by many Democrats, Republicans, and stakeholder groups, the act was opposed by some in the disability community, myself included.
I am particularly troubled by a provision that has not received much attention: the requirement that states begin effectively geo-tracking people with disabilities who use personal care services through Electronic Visitation Verification (EVV) systems.
I have spent the past seven months gravely concerned for my future. With the imminent repeal of the Affordable Care Act (ACA) and the subsequent massive cuts to Medicaid, my ability to receive the necessary supports to live and work in my community is at great risk. EVV will place me further at harm.
EVV is an electronic tool used to monitor personal care assistants (PCAs) and home health-care workers. The 21st Century Cures Act mandates that states implement EVV systems by 2019 for PCAs and 2023 for home health-care agencies. States who do not comply will face cuts to Medicaid funding by the federal government. The looming health-care reform bill has no specific bearing on 21st Century Cures Act. That said, any cuts to Medicaid will very likely result in cuts to home- and community-based services, which pay for PCAs.
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In accordance with the 21st Century Cures Act, PCAs and home health-care workers will be required to utilize EVV systems to enter the activities they perform, the name of the person for whom they provided services, the date and the time they clock in and out, and the location where they provided services. This data is to be tracked via cellphone, tablets, or landline phones, and includes a GPS component that geo-tracks the care provider—and, by extension, the person with a disability receiving the services. To date, roughly ten states have implemented EVV, and many more states are in the process of doing so.
I live in Massachusetts, a state that expects to fully implement EVV requirements by 2018. I rely on PCA services to assist with all activities of daily life and have grave concerns about what EVV will mean for me and my livelihood. I have been a PCA consumer for more than 20 years, without issue. Because of my PCAs, I have had a very fulfilling and successful life. I am truly appreciative of the PCA program, especially its consumer-directed nature.
PCA services grew out of the independent living movement, which began in the 1960s. Rather than warehouse people with disabilities in state institutions and nursing homes, advocates pushed for services that enabled disabled people to live and work in their communities. Under the consumer-directed model, people with disabilities are the employer and oversee their care and employees. This is the cornerstone of independent living. Personally, I choose when and where my PCAs work. This includes having them assist me by running errands, meeting me in different locations, and sometimes being at my home without me to clean and do laundry. I also travel with my PCAs for work and leisure.
EVV completely undermines this consumer-directed model. Both the PCA and consumer have to check in. This assumes that people with disabilities are always home. Moreover, sometimes PCAs assist us without us present. What if they are running errands? What happens if I am not home and need them elsewhere? What if I am traveling—can I “check in” my PCA from out of state or even out of the country?
I truly believe EVV is a frightening step: It diminishes my capacity to be viewed by PCAs as the employer. The EVV will perpetuate the perception that the state, not I, am the employer. Without the employee-employer relationship, my care will be at risk. Indeed, EVV flies in the face of the independent living philosophy and will greatly weaken PCA services.
Moreover, EVV violates my privacy rights guaranteed by the U.S. Constitution. Generally, the government cannot track the location of private citizens without approval by the court and a showing of cause. But EVV will require PCAs to check in and out using GPS software. PCA consumers would also need to check their PCAs in and out using the same GPS software. The checking in and out by PCAs and consumers will allow the government to know the exact location of the PCA and consumer. In other words, the government will be surveilling PCAs and PCA consumers.
While I acknowledge that employees may legally be monitored by their employer, that does not permit the government to surveil private citizens, such as PCA consumers—or, for that matter, PCAs themselves. Even though Medicaid pays for PCAs, under the PCA program, the consumer, not the state, is considered the employer. Hence, it seems to me that the government cannot legally surveil PCAs. Moreover, the government cannot lawfully surveil PCA consumers because we are private citizens.
Why should the government be allowed to know where I am at all times simply because I have a disability and rely on PCA services?
Further, EVV is purportedly being implemented to deter fraud, but it may not do so. Across the country, millions of people with disabilities receive long-term services and support, such as PCA services. While I am sure there have been instances of fraud, I cannot imagine that the number is very high throughout the country. In 2016, for example, five people were charged with PCA fraud in Massachusetts. That fraud was the result of billing MassHealth for services that were not provided, double billing for PCA and adult foster care services, and charging for home care when a patient was hospitalized; while EVV could have prevented some of that, it is not worth compromising the privacy of many individuals for the sake of a few cases, and there is almost certainly a more cost-effective option. In Massachusetts, we undergo yearly evaluations where we are assessed and authorized a set number of PCA hours based on our needs. We are not permitted to use more than the authorized hours without prior approval, meaning the number of PCA hours being billed has already been authorized by Medicaid.
I absolutely believe fraud must be deterred. We must stop those who abuse the system by billing for hours not allowed. However, this should be done by better oversight, auditing, and strengthening the authorization process, and through increased monitoring and better education for PCA consumers. If people are “gaming the system,” EVV will not stop it—based on the few existing fraud instances, they will likely find a workaround. Hence, resources should be directed toward measures that will actually work while not harming the consumer-directed nature of the PCA program.
EVV is based on an assumption that most people with disabilities are abusing the system, which is clearly untrue. EVV penalizes PCAs and consumers by treating us as criminals. It is akin to ankle bracelets. The only thing I am guilty of is having a disability, and I should not be demeaned because of that. I pay into Medicaid for PCA services and should not be penalized for accessing what I need to live in the community.
Finally, I believe that the EVV system will limit my ability to hire PCAs. As more and more administrative requirements are placed on PCAs and consumers, it will be increasingly difficult to hire and retain them. Pay for PCASs through Medicaid is already very low; most PCAs are low-income women of color, and this will disproportionately affect them. In short, most people will not work for low pay while being tracked by GPS. Personally, I am concerned that many of my PCAs will resign if EVV is implemented and they are required to use GPS software. If the government is truly committed to the PCA program and having people with disabilities integrated in their communities, the government must stop imposing unnecessary burdens, such as EVV, which only weaken the program.
In the 1999 Olmstead v. L.C. decision, the U.S. Supreme Court upheld the rights of people with disabilities to live in their communities and ruled that unjustified segregation violated the Americans with Disabilities Act. To that end, states are required to provide the necessary supports to enable us to live in the community. Curtailments to community-based services, such as EVV, undermine the letter and spirit of the law. According to the National Council on Independent Living, the 21st Century Cures Act “promotes institutionalization, still increases funding for involuntary outpatient commitment, and influences new HIPAA rules to lessen privacy for people with psychiatric disabilities.” I believe that these restrictions will likely lead to the unnecessary institutionalization of many people like me.
But this can be stopped. Proponents of the ACA must stand up to those in Congress who seek to hurt Americans by taking away our access to health-care services and supports. Meanwhile, members of Congress should move swiftly to repeal the EVV mandates of the 21st Century Cures Act—something most probably do not even know was part of the law.