Self Advocacy and Senator Riegle

Dohn Hoyle, Partners in Policymaking Faculty Member, Activist and Organizer
26. Self Advocacy and Senator Riegle
Now we're in the same thing here. Let me go back a little bit further. There was a point at which when we were looking for Medicaid reform, our senator was on the finance committee with Lloyd Bentsen and so on and so forth. And among the things we did was bring in legislators to see what people were doing and what was going on. And the reason I'm bringing this up is because your "Parallels In Time" has a videotape of Becky.
It turns out Senator Riegle from Michigan's staff, and Senator Rieglel to start with had lunch with Becky. At the time Becky was working at a Taco Bell. Becky's pretty significantly impaired and legally blind in addition to her other impairments. But, they accommodated her, she used to mix all the sauces at Taco Bell when they did it at local establishments. And now they come in packets and they all get distributed by the MegaCorp or whatever. But back then they had to mix them and they used heavy black tape to find the levels that she needed to put different things in to mix the stuff.
And when Becky learned she was gonna have lunch with a US Senator, she insisted on wearing her uniform, 'cause she was so proud that she worked at Taco Bell. So the senator got to have lunch with a (chuckles) Taco Bell employee and myself, and staff. And somebody, manager of the Taco Bell. So when the attempt at changing Medicaid reforming Medicaid, clearly it wasn't going to pass. Senator Riegle got Senator Bentsen to put in instead something called the CSLA, Community Living Supported Arrangements or amendments. I don't remember now, it's too long ago.
And in Michigan, The Arc, and the DD Council were given authority to try to have some hearings and write this up. People at the Howell Group attended every hearing and gave testimony about percent among these other things. But, that was all ignored. And so Michigan's application for these being one of these seven states that gets a good size hunk of money to pilot something because Bentsen didn't wanna reform Medicaid. And this is a soft offer to my Senator. So we were in line for one of those.
When you do something like this at the federal level, usually one of your legislators, a congressperson, or senator takes the lead on it. Well, clearly Senator Riegle took the lead on this. And so they said, "Okay, well good, we're all in line for this. Here's our proposal." Et cetera. And among other things that we were gonna do is they were gonna have parents monitoring people living in these separate, living in their own places, et cetera, et cetera. And to those of us in the Howell Group, we wanted people to support their sons at living apart them not monitoring them. Anyway, and to skip person-centered planning and everything else.
So I got a call from the head of United Cerebral Palsy in Michigan and he said, "Oh my God, what did you do?" I said, "What?" Well they got a call from the DD Council and then from The Arc saying, do something about H-O-Y-L-E, about me. And then they asked "why?" Well, Riegle says this doesn't have the approval of of the advocate in Ann Arbor. This is where I'm from. And so he's not going ahead with this proposal. So they had to change it. Now I got nasty calls then from the DD council, and from The Arc, and then from the department, from one person who was responsible for for farming it out to them to write it.
But the director finally called and said, "I hear we need you." And so those people had to sit there while I told them what needed to be in the proposal was a nice moment for me. I shared it with the Howell Group because they were responsible, they clearly were responsible. And so we ended up with person-centered planning now in this CSLA pilot and so on and so forth. And so anything that ultimately came, came through that process and parents were not monitoring their kids.