A quiet genocide of the disabled in America

A black and white picture of stacks and stacks of paper and files. I borrowed this image from www.therollingindian.com.

I’m finding out about more rules, regulations, and denials coming down the pipe for disabled individuals who receive personal care assistance funding from Medicaid programs around the nation. Trump supporters will say, “nothing has passed yet, this isn’t Trump’s doing, it’s too early.” I call bullshit. Why?

It’s important to realize that Trump and his administration have made it perfectly clear that the most vulnerable Americans — starting with the disabled — are not among his top priorities because…dare I say it — we made his life a living hell while he was running for President. And no one should ever, ever cross him or else. Now, thanks to his election, insurance companies, state-funded programs, and anyone in charge of moving policy that helps the most vulnerable are bracing for major changes. Many are leaving their positions or fall into a state of paperwork paralysis.

Insurance companies deny procedures, equipment, and medicine because they know that by the time consumers get through an appeal process, their Obamacare or the patient, whichever comes first, will be dead and gone.

State-funded PCA waiver programs are happy to implement “cost saving” new rules, like adding on a 3.5-hour mandated training for new personal care attendants who work for $9.50/hour with no benefits before they are hired. It’s like asking a person who is about to apply for a job at McDonald’s to go to a 3.5 hour, UNPAID, training BEFORE filling out an application.

Or, my favorite, Electronic Visit Verification rules that mandate a PCA and clients get geo-tracked to ensure that they are signing in and out at the exact time stated on their already scrutinized time sheets (sounds a little like house arrest to me). While these moves wouldn’t have gotten a lot of backing before Trump was in office, now, conservative agencies can start pulling this crap because they know that they have the upper-hand and backing from Tom Price, Health and Human Services Secretary, to do so. When people like myself face this kind of undue burden, we can’t find help. When we can’t find help, we either end up in a nursing home or we die.

A friend was called TODAY and told that the PCA care that she’s been eligible to receive for DECADES is poof! gone. When she attempts to find answers, the bureaucrats she talked to pre-Trump are suddenly “retired,” “on leave,” “working for the private sector.” She literally texted, “I have no idea how I’m going to get to bed tonight.” After a long conversation, she said that she could borrow from her retirement for the time being until she goes broke and then potentially do a GoFundMe to get by for a bit longer. My friend can’t afford to pay $30,000 out-of-pocket per year for her care, so it’s a matter of time before she’ll be bankrupt.

Also, today, my state vocational rehab counselor announced that he will be leaving his position in a week. This is the third counselor I’ve had in a year. What does this mean? This means that my case will be set to the side for another three to four months while his position is filled by another person who will realize probably within days that she will be buried in paperwork and administrative rules before she can even start to help people. This means that my adaptive van, which is having electrical and computer issues, will take longer to get addressed, and the potential for me to become stranded without transportation to my job sits at much higher risk.

Yes, people with disabilities need to fight, but it’s also important for every person, disabled or not, to clearly understand that this fight is against an ingrained philosophy and belief that the disabled are not WORTH the investment of time, money, and influence; a philosophy that Donald Trump and most Republicans (not all) vehemently and systematically follow each day they hold office.

Mark my words: A quiet and ever-so-subtle genocide of disabled Americans started on November 8, 2016, and those who voted for this monster and his minions better take a long hard look at their crimes against humanity.

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