A Salem gate. My sister and I stand at one today. A new agency came and did an intake (it was at one, not eleven as my sister said, but it was okay. I was able to stay). With this agency, she won’t have to be “the boss”. Being the boss would have required that she access a state-kept data base of PCAs, make calls, set up interviews, then submit all the papers of employment. After that, she’d be responsible for preparing and submitting time sheets twice monthly. The intense challenge of filling out time sheets is one reason the other PCA walked out (I do my own).

The employer model of providing support for the disabled can be empowering. But not when your disabilities include ADHD, severely impaired executive function and radically restricted movement.

But! This agency tends not to hire relatives. I’d have to approach the various vendors, see what their protocols are, possibly attend trainings. I don’t really want to. It might just be time to walk through this gate and see how we might be able to re-work things.

Will it suck to be attending to a spectrum of need without getting paid for it? Probably. But we’re not talking about a lot of money here and I’m curious to find out whether this change might bring benefit not just to my sister but also to me.

It rained on the drive home and it took a full hour. I chanted all the way. The phrase that came between the syllables was a new one. Very basic. Very on target. “I have a right to my existence”.

When I texted my husband later, I meant to report that I had chanted all the way home. But auto correct wrote this: “I changed all the way home”.

And by God. It was true.