Feature Issue on Self Direction

I am a parent and guardian of Gabrielle Joy Austin, which is her English name. We just call her Wob, which comes from her indigenous name, which means Golden Eagle Woman.

Wob is 32, and lives with significant disabilities, including autism, and has challenging behaviors, including self-injury and injury to others. We’ve been self-directing for her services since 2004, though at times have had to use agencies to fill gaps. We’ve had agency workers who came for four hours and never returned. The maximum hourly rate we could pay has traditionally been very low, though lately it has increased. Even so, it’s still very hard to find staff.

In 2019, staffing was so difficult, we tried placement in a group home. She lost weight and barely was surviving, much less thriving. She lost many skills and abilities, went down to 108 pounds and was in and out of the hospital. She ended up in a nursing home, then was basically patient-dumped at an emergency room. Then we found another placement, but I felt they had no interest in being a team or working with me. They probably just saw me as criticizing, or that I didn’t know how to care for her.

With help from The Arc of Michigan, I learned about self-direction. They had a lot of good webinars, and connected me with one of their speakers, who helped me find advocates and resources that changed her life.

I found the Michigan Department of Health and Human Services’ Self-Direction Technical Requirement Implementation Guide , and I’m constantly Googling topics and rewatching those Arc webinars. I’ve been to self-direction conferences and joined a parent advisory group. We’re working hard to encourage strong local leadership in self-direction. We can do this.

Wob Austin at summer camp.

We're learning more about exercising our budget authority. If it’s in the individual’s plan and tied to a goal, we can flex some of the funding into what she needs most. Right now, I’m advocating for heated mats that melt the snow on the sidewalk. If I leave her unattended to shovel, she will turn the stove on or do something else that is potentially dangerous.

I didn't learn about all these things, really, until August 2021. That's when she returned home with the self-directed budget. Since then, she has had two wonderful caregivers, whom I originally knew through my mom, who knew them from when she worked as an in-home pediatric care nurse. They are incredibly skilled and just have that gift of caregiving.

Wob was the first person in our county to get a support broker, who is part of the care team and helps implement Wob’s plan. This is a complex and important role, and we’re on our fourth one. They need to know the system, the terminology, and they need to know about human resources. Just posting a job can be difficult because we’re a private residence. I just wish that the policies and the process could be better defined and more easily accessible.

And with the direct care crisis, it often feels as though nobody wants to do this work, or if they do, they want to work with someone they can take with them to the grocery store, who can talk, and who is non-aggressive. They want easy.

Still, if I had known before what I know now about self-direction, it would have saved my family a whole lot of trauma. Today, Wob does therapeutic horseback riding and other activities, and they are helping. She was recently able to purchase her first augmentative and alternative communication device. We’re making slow but steady progress.

Wob has two adult sisters, one of whom is already a standby guardian. They know their sister is counting on them for the future when I’m no longer around, but I don’t want them to have the whole responsibility for managing everything, which is why the support broker role is so important. I’m hopeful that by the time they are in this role, it will be easier.

It’s constant advocacy to fight for the services Wob gets, and knowledge is power. It took a lot of research and talking to allies and advocates to get where we are, and I know a lot of parents are too exhausted to know what to ask for. It’s been blood, sweat, and tears to get my daughter’s needs met. Self-direction shouldn’t be a well-kept secret.