Electronic Visit Verification (EVV) requirements were passed into federal law as part of the 21st Century Cures Act (‘Cures Act’) of 2016. The Cures Act requires the implementation of EVV to monitor all personal care services (PCS) and home health care services (HHCS) funded by Medicaid.
States were initially tasked to ensure that all state Medicaid and waiver PCS provided in the home comply with EVV guidelines by January 2019. Recent federal legislation extended this deadline to January 2020. Because many people with disabilities rely on these services to live independently in our homes and communities, the disability community is negatively impacted in a variety of ways by EVV policies and mandates.
The National Council on Independent Living (NCIL) believes that people with disabilities have the right to be integrated in society and control our own lives. EVV systems undermine the intent and integrity of the Independent Living Model and personal care services, including Consumer-Directed Services (CDS). EVV systems threaten the privacy of countless Americans with disabilities who would otherwise be free of intrusive governmental monitoring.
NCIL advocates for the leadership of people with disabilities in all policy discussions and decisions that impact our lives. The expertise and active engagement of people with disabilities is critical in all EVV development, implementation, and evaluation.
EVV VIOLATES CIVIL RIGHTS
Right to privacy
EVV is based on false stereotypes that people with disabilities and seniors are helpless and homebound, unable to have control over our own lives. EVV was designed to be implemented through a medical model: a one-size-fits-all approach in which individuals are “patients” and which leaves little room for individual consumer choice. EVV was designed based on outdated, ableist assumptions and is implemented by traditional home care agencies with standardized procedures and routines to which consumers must conform in order to receive services.
Forcing recipients of personal care services and consumer-directed services into the EVV “patient model” takes away our ability to live autonomous lives and experience constitutionally guaranteed freedoms that non-disabled individuals take for granted. EVV forces us and our care workers to have our movements, whereabouts, and very personal activities monitored and data
collected by state agencies – solely due to a lived experience with disability that requires personal care assistance.
The punitive proposition that Americans with disabilities and the caring providers who work with us must be surveilled by EVV is ethically untenable and socially archaic. It reverses gains of the Independent Living Movement, turning back to the default of unnecessary institutionalization, and strips Americans of their Constitutional rights to personal privacy.
The Americans with Disabilities Act (ADA) and the Supreme Court’s Olmstead ruling mandate that Americans with significant disabilities should receive services in a way that enables us to live in the community in the “most integrated setting”.
There is long history of a critical shortage of personal care providers in the home care industry.1 With stagnant and, in many states, declining wages over the past decade, independent providers such as personal care assistants (PCAs) are continually expected to do more with less time, less pay and less education than their traditional agency counterparts. The additional requirements of EVV will further erode the ability of PCAs to do the critical work of providing personal care.
These workers have voiced concern about their ability to continue to provide a high level of care while also using electronic monitoring systems (EVV), especially in health emergencies or illness. This will cause many PCAs to leave the field completely. There are already increasing reports of PCAs abandoning this line of work as EVV is implemented across the nation, leaving the struggling PCA industry, and more importantly, people with disabilities in an even more dire state.
With decreasing availability of PCAs and chronically inadequate wages, more consumers with disabilities will be pushed into nursing facilities, which take away our dignity, and cost much more in Medicaid dollars. State governments must accept the responsibility of these ramifications as they knowingly pursue EVV in the face of a provider availability crisis.
Forcing individuals out of the community and into nursing facilities by not addressing the provider shortage is irresponsible; further exacerbating this provider crisis via mandatory EVV is discriminatory under federal laws. The ability to live integrated in the community is a civil right for people with disabilities under the ADA and the Olmstead decision. Our civil rights are violated by the collateral damage of EVV.
De facto surcharges – the hidden costs to consumers
Medicaid beneficiaries are among the poorest Americans. To be eligible for Medicaid and personal care services, consumers must meet severe income and resource limits. Income usually cannot exceed nominal amounts, typically around $1,000 per month total, depending on the state. Consumer resources or assets generally cannot exceed a cumulative value of $2,000.
Nonetheless, all proposed EVV systems require the consumer to spend part of our meager resources to regularly access, maintain and pay for secondary services. These may include a smart phone purchase, cellular data plan, Internet connection, landline telephone connection, electric utilities for charging devices, et cetera.