Feature Issue on Self Direction

(Left to right) Andrew Whalen, Deb Kney, Scott Hopkins and Michelle White at the University of Rhode Island Advocates in Action RI’s disability awareness program, “This Is Us.”

After I spoke on a panel at the Self-Directed Support Conference, a woman stood up and said that when she was a teenager, she often babysat for a young boy with autism. She said it was hard sometimes because she didn’t know how to work with kids, particularly someone with a disability, and she learned a lot. She said it prepared her to be a parent, and she shared that she is now the parent of a young adult with autism. And then she said that boy she babysat was on the panel, and it was me!

Everybody, including me, was really surprised, and she thanked me for all I had taught her. She said my parents, if they were still living, would be very proud of how far I’ve come. In that moment, I felt proud of myself, and honored, too, that I had that kind of effect on someone. Her statement made a big impact on me. It made me feel appreciated, like I had actually helped her in preparing for life in the real world, for what the real world can throw at you sometimes. I talked to her afterwards and once she told me her name before she was married, I remembered her.

My relationship with RIPIN goes back a long time, too. My mother worked with Susan Donovan (now a senior program director at RIPIN). I’ve met a lot of people through working with another organization, Advocates in Action. Having a big network is important in self-direction because of the difficulties in finding staff.

After my mom died in 2016, my sisters and Advocates in Action helped me get started self-directing. We were a bit overwhelmed at first, and it’s still hard because of the shortage of workers.

I’ve had a couple of really good direct support professionals, and we found those through my sister’s personal network. They’ve moved on now, and even though I still qualify to have services at home, I don’t have anyone right now other than some help with transportation because it’s difficult to find people. My support broker helps advise me on how to do some things on my own. When I do trainings about self-direction, I don’t sugarcoat how difficult it is to find staff and I think people appreciate the fact that I’m upfront and honest about it.

My life wouldn’t be any easier or better at all if I got more traditional services. Something I’ve always talked about at Advocates in Action is the importance of flexibility. I look at the system and what providers can provide as being in one box, and if I want to get the most out of life, I’ve got to be able to think outside of that. With providers, there’s often not a whole lot of flexibility, so that’s one of the things I like most about self-direction.