Does The Federal Government Want To Spy On Disabled People? #StopEVV
Dear Representative DeGette and Representative Upton,
Hello, I am writing to you as a proudly disabled American who receives home health aide services, in regard to EVV or Electronic Visitation Verification devices.
To be honest, I am highly perplexed as to why the government feels EVV is even necessary?
Currently, my PCAs (personal care attendants) clock in and out for their shifts, via the use of my phone. They are not able to clock out or clock in, unless I give them access to my phone. It's a system that works, so why would the federal government even pursue another system? How is a new system to the benefit of the disabled and/or elderly consumer? Of all the issues that need immediate attention and tweaking, this is not one of them.
When I heard about the shockingly invasive variations of EVV, I was stunned. That some EVV devices have the potential to listen in on our conversations, to record audio and video of what is happening in our homes. And what is worse - GPS, with the ability to track a consumer travels (if applicable) and location. How is that not an absolute invasion of our privacy?
I am aware that this is federally mandated, and that any state who refuses to implement EVV, will lose some of their medicaid funding. That said, the states do have the option to choose the most basic and least invasive system, so why are these big brother-esq versions even a possibility?
I am currently mostly bed bound, but in the process of trying to get a proper motorized wheelchair, so I may once again live an active life. What would happen if I was forced to have the most invasive form of EVV on my phone? I have a PCA with me for 8 hours a day. Would people then be able to listen in on my conversations when I meet up my friends? My family? Would people then be able to listen in when I attend community and/or activist meetings? To doctor appointments?
Do you know which part of the population is monitored to this extent? People who have committed crimes and have an ankle bracelet that has the capacity (in many cases) to track their location and to listen in on their conversations. Why is the government treating disabled and/or elderly consumers like they are criminals with monitoring ankle bracelets? What is our crime? Being disabled? Being elderly? Needing help?
I understand that the implementing of EVV to American homes is part of The Cures Act which "would provide funding for research into cures for several life-threatening diseases." but how about while we search for cures, we not ignore the consumer's quality of life? So often, people focus on a cure but rarely bother to ask the consumer : what would be helpful to you? What would make your life easier? I can tell you that if the government were to ask, not one single person would reply: EVV.
This is no ethical way to treat innocent people and I hope you will really think about the comments you are getting and do the right thing.
[image of a woman. behind her is a bunch of 1′s and 0′s (code)] *************************************************************************************** For information on EVV and how you can get involved, check out #StopEVV on twitter. This letter was written in response to a call for comments https://twitter.com/kendra_scalia/status/1205710773743427584