Impact Feature Issue on Self-Determination and Supported Decision-Making for People with Intellectual, Developmental, and Other Disabilities

This interview with Brad Linnenkamp highlights the experiences of one self-advocate who practices Supported Decision-Making in his life. Supported Decision-Making is a process that involves people getting the supports they need to be involved in decisions about their lives. Using Supported Decision-Making is key to becoming more self-determined. Brad’s conversation with interviewer Evan Dean highlights two important aspects of Supported Decision-Making: Managing the risks of decisions, and developing a trusted support team. 

Brad’s first job was in a sheltered workshop, but the job was not meaningful to him, and he wanted to develop friendships outside the workshop. After much consideration and conversation with trusted advisors, Brad decided to leave the workshop and give up his HCBS services. He has worked in competitive employment since that day, including 20 years at the Self-Advocacy Coalition of Kansas, where he advocated for state policy and mentored others with intellectual disability on ways they can be self-determined in their lives. Today, Brad works as the Community Liaison at Kansas University Center on Developmental Disability (KUCDD), a University Center for Excellence in Developmental Disabilities. He has lived a self-determined life. His story provides valuable insight for other self-advocates, as well as family members and professionals, into how to create the supports needed for decision-making that promotes self-determination. 

What does being self-determined look like in your life?

For me it is being able to make decisions based on the things that I feel are necessary for me to do on an everyday basis, and not being afraid of having other people tell me what to do or influence my decisions. I know that people sometimes worry that I will make bad decisions, and I am just saying that people have a right to make up their own minds and do what they want. The other thing I want to say is that I just hope that people will learn from their mistakes. I think making bad decisions and learning from your mistakes is something that we all do that helps us all become more self-determined. 

What is an example of a mistake that you've made and how you learn from it?

A few years ago I got caught up in a subscription for magazines on the phone. I have trouble saying no to people. The people on the phone were pushy and that led to me signing up for magazines that I really didn't want. And once you get into that web, as I like to say, it is hard to stop the subscriptions. I had to ask for help in seeing if I could even get some of my money back. I didn't get it all back, but I got most of it back.

Who did you ask for help?

Michelle [a personal care attendant (PCA)] has been working with me the longest and is also a good friend. She helped me try to get my money back. We had to go through some hoops to get it done, but eventually it stopped. That's a great example.

What do you do differently now because of this experience?  

I still keep their [the magazine subscription company] phone number in my phone so I know to just ignore it when they keep calling. I've gotten myself in trouble a couple times over the phone and it's easy to do, and so I've learned just don't answer the phone, especially if it says restricted. Or I look at the area codes. 

What types of decisions do you ask for support with?

Some of it is financial because if I get a bill for something and then somebody comes in and says, “Did you pay that already?,” like a credit card bill, sometimes I forget if I paid it when I don’t tell them right away. So it kinda gets confusing. So right now what I do is, whenever there's a bill, I call the person that helps me with that and just give her a heads up that I already paid it so that she knows. 

So, the person that helps you with your financial stuff, she helps you keep on track? 

Yeah. That way she doesn’t come in and duplicate paying something when I've already done it. I have an issue at times forgetting that I've already paid a bill if I don’t tell someone. Most of my bills are paid direct online. I know how to manage dates and all that stuff. But with my cable bill, sometimes they say I have a credit one month and then sometimes it's something different the next month. We go in and do that bill kind of manually and change the amount for month to month. For my credit card bill, sometimes we look at what my income is and we change it from time to time depending on when my money comes in. 

How did you determine the person who helps you?

I think it was just because Michelle [my PCA and trusted supporter] started doing it [helping with the bills] and said she would help me with my financials as well. The other people [his trusted supporters] just didn't have the same amount of time to work with me so we just decided to let Michelle help me out with the bills when needed. I've had some repair work done around my house and had plumbing and water issues. Even though I own my own home, I live in an apartment complex and the rest of the units are rental apartments, so I've had issues with plumbing with my upstairs neighbor. I just needed to make sure that I got to talk to the insurance adjuster and get the people that I want to do the work lined up, and she helped me with that. It's nice having somebody there to help me decide what repairs needed to be done even though it was obvious what needed to be done because of the water damage. I know a handyman and a mechanic. I’ve been going to them for a long time. They have always treated me well and don’t overcharge me or anything, so that's great.  

Related to that, I think a big concern with Supported Decision-Making is that a person will be taken advantage of.  Have you had experiences where you were taken advantage of by someone who was helping you make decisions?

It took me a second to think of one. I had to think back a ways to when I first moved to Lawrence - before I could direct my own services.  I had a personal care attendant who would come and work for me, but she also wanted me to buy her cigarettes. I ended up having to fire her. That’s a perfect example of being taken advantage of.

How did you come to the decision to fire her? 

That was a time when I had a hard time saying no to people. It would be different today because of what I've learned over the years.  People with intellectual disability – and all people in general - are afraid to be retaliated against if you do something. So that was my big issue. I had some of my coworkers at the time who I would talk to and tell them the situation. I told them I was buying her cigarettes. They would tell me, “You need to stop that.” But it's really hard to do when you're not right there and it took me a little bit. It’s difficult when you're making those type of decisions and you haven't had a lot of experience. 

I ended up telling her [the personal care attendant], “This isn't right. I'm not your cigarette provider.”  So that was financial exploitation. I knew what I needed to do to [fire the employee], but I was glad I was able to talk to somebody first. I actually think the one thing I wanted to make sure of was that if I told somebody and she retaliated, at least somebody else knew about the issue and then they could help me get out of it, so to speak. If I knew then what I know now, then I would have done it totally differently. But you don't learn until you're actually in it. If you asked me to handle that situation now, it would have never happened to begin with.

That’s another good example of making a mistake and learning from it. 

That's my biggest thing. We have some material that we used at work on rights and responsibilities. One of them was, “You have the right to make mistakes and the responsibility to learn something from them.” 

One thing that I think is cool is that Michelle is helping me make day-to-day decisions and then I have other supporters who are co-workers and friends who are there to bounce ideas off. All of those people help me with my decisions. I can bounce ideas off them and get their feedback, but I end up making the final decision for myself. The one thing that I learned especially since I got to know Issac [this is a pseudonym] - he was struggling with family stuff and so he started talking to me and I'd give him support, and say, “You'll be okay. Just decide what you want to do.” And so he's done the same for me. When I moved to Arizona for awhile because I have family out there and was trying to get my feet under me, I was having a rough time getting adjusted to living out there. Issac was the one that I would talk to a lot on the phone. He would listen – and I needed someone to listen to me. 

That’s a great example of how a friendship develops.

Also Issac traveled with me to a couple conferences recently.  He went as my personal care attendant as well as my friend. I asked him what he wanted me to pay, and he said he would do it for nothing because we are friends. So that's cool. Plus we hang out and watch sports when we are off work, too.

How did you decide who to include in your group of supporters?

I think the way that I make that decision is thinking about, “What did they do for me?”   There are a lot of decisions that we make that you're going to have to do more than once, like transportation. Do you ever get the feeling that sometimes there are certain questions that you get to ask certain people and then there's other questions that if you ask another person you know they might not be receptive to it?  

I think that's how I make my decisions – just by looking at the reaction [from someone] and [observing] how they respond when I ask specific questions. I think part of it is a feeling I get. I use my sense of humor a lot to get me through a lot of things and I like it when people understand my sense of humor and don’t get offended. So, it's kind of like you get a feel for the person and whether they are resistant and don't want to do anything for you or they come up with excuses about not doing something. I really get a good sign as to what type of people to have around me by how they react to what I want or what I ask for.

That sounds a lot like how I determine my friends. I liked what you said about one of those key pieces being your history with the person.  It's not like “OK, today I'm going to decide that these are the people that are going to support me.” It’s all based on your history making decisions and with them.

For my inner circle or my group of people that I really trust, I like keeping it small because I don’t like a bunch of people knowing my business on a day-to-day basis. Because then what usually happens is people start talking either good or bad about you. Sometimes it's better to keep it [the group of friends and supporters] nice and tight. I understand that some people may like having as many people in their daily life as they can, but I only want a few people because some of the stuff is personal.  

What advice do you have for parents who want to support their children to be self-determined and build supports for decision-making?

I mentioned this earlier and it doesn't happen a whole lot, or it should happen more often than it does: Allow people to fail. That's an important thing. You have got to allow your children to experience the good and the bad of everyday life because we all go through it, and if you have somebody always there to clean it up what does that teach you? My parents expected me to do my best. They were there to help me but they weren't there just watching every move I made. I have a cool story that I like to say.  My mom is from a family of eight girls and one boy and one day I remember her telling me a story that my aunts and uncles always thought they [my parents] were rude because they didn't like how my parents were raising me. They [my aunts and uncles] felt like my parents should just step in and help with every situation and all that. But my folks kind of sat back and just let me learn on my own. If I struggled with something or they didn't feel like I was safe, of course they would step in and help. I am so thankful for how they raised me because it made me look at life like, alright there's always been low expectations for people with intellectual and developmental disabilities or all disabilities in general. We have to change people’s thinking and expect people to have higher expectations even if they [their children] do have some sort of learning disability, which I was  diagnosed with in high school. We must change that mindset – we're not here just to be taken care of. We need to be able to use our own voice and we need to stand up for ourselves. Nobody's perfect and there will be bumps in the road, but that's just a fact of life.