No, really. That’s what happened in the House of Representatives today. I wish I were making this up.

Here is how it happened: Congressman Murphy (R-Pa. 18) has a big long bill, H.R. 2646, the “Helping Families in Mental Crisis Act,” that makes a lot of changes to our mental health system. Two days ago, an anonymous “amendment in the form of a substitution” to H.R.2646, was introduced in committee, and that amendment was passed today.

Unlike the original bill, the amended version – the version that was passed out of Committee – includes Section 207, which requires States to create a system for Electronic Visit Verification for all personal care services and home health services through Medicaid. The Federal Government will pay for 90% of the costs of creating, and 75% of the costs of operating, this system.

This amendment was stuck in at the last minute. It is a giveaway of Federal and State money – your tax dollars – to a few companies who provide EVV systems right now to the States which use them. Under this new law, every State must use them, which means that every State must contract with one of these companies to create an EVV system. Not only is this a disaster; it’s a naked giveaway of taxpayer money.

Why is this a disaster? Because EVV requires an attendant to answer the phone at random times in order to confirm that he is with the consumer and is providing personal care or home health services. If the attendant does not answer the phone, he or she does not get paid. In some cases, EVV goes further than that, requiring the attendant to write down each specific task that they performed and how long each task took, in order to be paid for their time.

Why is this a disaster for people with disabilities? It’s a disaster for a lot more reasons than I have time to get into, but here are a few:
– Some EVV systems require the attendant to call from a home telephone. This requirement means that consumers have to stay at home all day – a form of house arrest.

– Some EVV systems use geo-tracking to confirm that the attendant is indeed in the home of the consumer. Like the home telephone, this system requires people with disabilities to remain in their homes in order to receive services.

– Some EVV systems will randomly call the consumer’s cell phone. Although this allows the consumer to leave their house, it requires a them to always have their phone on, with them, and ready to hand to their attendant when a call comes in. Ever forget your phone at home? Ever run out of batteries? Ever in a place where it’s rude to talk on the phone? Sorry; that looks like Medicaid fraud and now your attendant won’t get paid. Oh, and if you don’t trust your attendant with your phone, which might also have sensitive information on it? Too bad. Hand it over or you’ll lose your services.

– Where EVV systems require the attendant to write down the tasks and minutes, that has the effect of placing the consumer under constant government surveillance. The State Medicaid program is going to know how often you went to the bathroom, and what you did while you were in there, every day of your life.

None of this even begins to mention the effect that an EVV system will have on attendants, whose work keeps our community alive and out of institutions. Our attendants are already dramatically underpaid, and under this law they are going to miss out on whole days of pay just because a consumer was on a conference call and didn’t want to hand her phone to her attendant when the verification call came in? This is going to kill attendant services.

These EVV systems are based on the ableist belief that disabled people just sit at home being waited on by attendants, that we have nothing better to do with our lives than see to it that Medicaid can check in on us. This belief is false: disabled people, including people who use attendant services, are ON THE MOVE. We are at work; we are attending and teaching classes; we are going the park and the mall and the movies; we are meeting with our elected representatives; we are running for office; we are playing sports; we are starting businesses. We are living our lives, and phone calls interrupting our lives at random times of day so that our attendants can verify that, yes, they are really here with us, are a form of discrimination. Nondisabled people wouldn’t put up with it. Why should we?

So just like that, the House Committee on Energy and Commerce unanimously voted for a law that will give away a bunch of Federal and State money to create a system that kills personal care and sends our community back into institutions. It wasn’t a considered decision. There was no debate about how this will affect the Disability Community or our attendants. This was a two-day old amendment, sneaking in under the radar of a Congress that does not care about our people. It is a disgrace.

Contact Adam Prizio