The United States government wants to track my movements. They want to know where I go, what I do, and who is with me every day. They’re setting up databases to track people like me right now. When they give the order, I’ll have to carry a special device, and I won’t be able to leave my home without notifying a government contractor.
I’m not a conspiracy theorist. I haven’t been arrested or committed a crime. A little-known provision of a 2016 law that goes into effect within the next two years threatens to steal the hard-won independence of millions of people with disabilities like me. It’s called electronic visit verification, and it’s even worse than it sounds.
I have cerebral palsy and use a power wheelchair, but I don’t let my disability limit me from living an active life. I live in my own home, I’m employed as Disability Editor here at The Mighty and regularly travel to conferences all over the United States speaking about disability issues. I’m also a travel blogger — that’s a job, not just a hobby — and I write about my experiences taking road trips across the country.
To live independently, I have personal care attendants (PCA) who assist me with getting out of bed, dressing, using the bathroom, cooking, house cleaning, shopping, driving and just about everything else. My PCA care costs about $4,000 per month, and no private insurance offers coverage for it. I have no choice but to be on Medicaid, and am in a self-directed Medicaid waiverprogram, in which people with disabilities control our own care. We hire our own personal care attendants, set the days and times they work, where they work and how they assist us.