People with severe disabilities like Ed Roberts founded the Independent Living Movement. Ed was assisted by personal care attendants for most of his life and neither he nor his attendants were subjected to technical surveillance and prohibitive policies that monitored their every move. Consumer directed used to be an utterly simple and deeply humane program that fostered living and letting live. In fact, it was precisely because he enjoyed the unhindered freedom to move and function that he accomplished all that he aimed for himself and us, his brethren, in the Independent Living Movement. His revolutionary Independent Living way of life was based on the notion that we may not be able to do many physical things for ourselves due to our disabilities but that we are still able to accomplish them with the use of assistive technology and the unhindered help of personal care assistants who respect our wishes and preferences in how to do things our way, when and how in the secure privacy of our home. The original consumer directed  was a very delicate and symbiotic relationship of respect and trust between us as personal care recipients and our personal care providers. The secure and private set up of that relationship is another form of the God-given right to life, liberty and the pursuit of happiness enshrined in the US Constitution, very much like a wheelchair is to one who cannot walk.

Consumer directed care is not like a business arrangement between animal handlers and a herd of cattle who have to be taken care of, an arrangement that businesses can manipulate with as much technology and control as they want. Yes, providing essential personal care services to human beings calls for funding the way we answer with food the problem of human hunger. But It does not give the government the right to violate our humanity and control and herd us like captive cattle. The outrageous insistence of government to force EVV on us or else is just truly sinister. Will this be another cottage industry to the home care and IT industries?

The Consumer Direct Program is only funded with Medicaid  dollars to make sure that disabled people don’t die, starve or suffer neglect because there is no one to feed, bathe and take care of them. The use of government funds to provide the personal assistance services should not force the loss of our civil liberties the way this intrusive EVV system exacts from the severely disabled who have no choice but to rely on personal care services. I’m sure that Taxpayers who fund the consumer direct  program would strongly oppose the use of invasive technologies that stifle the very basic freedoms that threaten their future when perhaps they themselves have to use the program.