…People with disabilities have a constitutional right to live in our own homes and communities and make decisions about our lives, established in the Supreme Court ruling Olmstead v. LC. But now that right is under attack from an unexpected source. In 2016, Congress passed the 21st Century Cures Act. It was designed to streamline the approval of new medications and medical devices, but they slipped in another policy change many people didn’t know about. It’s called electronic visit verification (EVV). It requires all Medicaid funded personal care programs to implement a system for verifying a PCA’s identity and the date, time and location where personal care services were provided. If states fail to implement EVV by 2019, they lose up to 1 percent of Medicaid funding.
Many disabled people require care providers to help them perform daily tasks outside the home, like going to dr appts, grocery shopping, work, etc. When considering this topic, remember that “disabled” is a broad label, and some very physically disabled people still work. Think of Stephen Hawking. He works but obviously also requires multiple personal care assistants through his day to help with basic life activities.
In 2016, congress passed a bill requiring electronic visit verification for all disabled people on Medicare using personal care assistants. This was aggressively lobbied for by companies who would be implementing the tracking systems.
- Disabled people are being issued smartphones which they must take with them everywhere, subjecting them to constant surveillance.
- The devices are being monitored by a contractor and GPS track the disabled person’s movements at all times.
- If the disabled person is more than 1000 feet from an “approved address” (usually only the person’s home) when assistance services are being rendered, the system automatically flags it as an exception and it must be reviewed by a human.
- This essentially traps the disabled person in their home (imagine all the places you go in a month more than 1000 feet from your home and adding them as “approved addresses”…meeting a friend at a new coffee shop? EXCEPTION…going to a new doctor? EXCEPTION…etc)
- The system also tracks the personal care providers.
- The law requires all Medicaid funded personal care programs to implement a system for verifying a PCA’s (personal care assistant’s) identity and the date, time and location where personal care services were provided.
- If states fail to implement EVV by 2019, they lose up to 1 percent of Medicaid funding.
This funnels a great deal of money away from patient care and into tracking systems. Additionally, it is a gross invasion of privacy for both the disabled person and their care providers. And it sets a disturbing precedent for society at large with respect to expectations of privacy.