Feature Issue on Self Direction

I’m a training leader for case managers in new self-direction programs or for support brokers, participants, and families who are new to self-direction. Being a case manager means assuming the participant is capable and is the boss. What the participant wants is what goes.

The author, at a movie theater with friends Mike and Nancy.

As someone with spinal muscular dystrophy, I’ve directed my own 24/7 care for about 25 years, since finishing college. I had caregivers through a traditional provider agency during college, with natural supports from roommates, but today my support needs are greater.

My first job was at an independent living center, where I interviewed and hired new caregivers. I learned a lot that I could later apply to hiring my own staff. I adapted their questions and learned how to check references and conduct interviews. When I hire someone, I make sure to check backgrounds and social media. You can learn a lot about someone from their social media. It took a long time and a lot of trial and error, but I hope I learned how to be a good employer. I had some supervisors who were not great employers, honestly, so I knew what not to do, too. I had an amazing supervisor at my last job and also with Applied Self-Direction, so I learned what kind of boss I wanted to be. I wanted to make my employees feel as valued and respected as my current boss does.

I once had a weekend caregiver who always had a list of places she wanted to go and changed the thermostat to meet her needs, without asking me. I am more than willing to work with people, and I’m up for going to new places or running errands that my caregivers need to do. With this person, however, it was her weekend to do things, and I just came along for the ride. We eventually talked about the fact that she was coming to my home, to help me live my life.

In Wisconsin, the highest hourly pay rate for personal care is about $18.83 per hour. Let’s be real; people do not want to do strenuous work for pay this low. Luckily, right now I’m fully staffed with great people. I just seem to find those unicorns in the world. One thing that helps is that because I have 24-hour care, I can block hours so that someone can work 40 hours over two days and then pick up a second job or be off the rest of the week. I try to make the job fun, too, by going out shopping or to restaurants or to a concert.

I’ve evolved my interview questions, which heads off some problems. I remind people that this is my home, and I need their assistance to live my life, not theirs. I say I’ll make every accommodation I can, and we can work together as a team, but it’s still my life. To learn if someone will be a good match, I might ask, “What would you do if I asked you to give me ice cream for dinner?” I am looking for people to say, “Give you the ice cream.” I don’t want people who say, “I would try to get you to eat something healthier first.” I ask them, “Would you do that to your friend or mom?” I want people who understand I make my own decisions. I do not need my caregivers second guessing me. Honestly, if I am having a bad enough day that I am having ice cream for dinner, you better give me the ice cream, because you might not like my answer if you try to get me to eat something else.

Besides managing a support staff and working at Applied Self-Direction, I also own a business called EmpoweringU. As a support broker with Wisconsin’s IRIS (Include, Respect, I Self-Direct) program who has a degree in human resources, I teach classes on self-direction, including how to find and manage workers, how to be a good supervisor, and all those things that no one teaches you. I discuss appropriate language and handling tricky situations. We empower people to understand they deserve the best life possible. Disabled people too often settle for what they have, because they think that’s all they can get. We are programmed to be thankful and not complain. That’s ridiculous! If the support person is scary or intimidating, they aren’t a good match. Even if you don’t find a best friend, you can find a better match.

When I used an agency during college, I had an 8 a.m. class, and the only time they could send someone to help me get ready was 5:30 a.m. I had to be up and ready by 6:30, just sitting there waiting, so I skipped that class a lot. Also, agency caregivers weren’t allowed to drive me, so I had to ask friends. I have amazing friends, but self-direction has been important because when you keep asking friends for things, you feel like a burden, and it chips away at that authentic relationship. Now, at dinner with a friend and a caregiver, my friend can just be my friend.

One of the secrets to having great working relationships in self-direction is treating staff as friends. It has to be a two-way street. Yes, people are here to take care of me, but as a good boss, I also care about them as people, and I value them. I have to make sure to show that! I’m a chatterbox, and when somebody comes in acting a little quiet, I try to draw them out, and I usually can. If it’s just a bad day, that’s cool, but in general I try to make it a good experience. I still have friends I get together with who used to work for me as caregivers. I have doctors, nurses, and therapists all as caregivers for me, so I must be doing something right.

Self-direction is the best thing I have ever done in my life, but also one of the most challenging. It takes a lot of time and effort. But I have to say, all of the challenges are worth it! Self-direction helps me not only survive but thrive.