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

Heidi Cartier lives a fulfilling life, enjoying her work, friends, family, and connections within the East Grand Forks, Minnesota, community. This outcome was far from guaranteed and requires a lot of work to maintain. Heidi has overcome several barriers along the way, thanks to her perseverance and ability to navigate support from family, friends, and disability service providers. Those support systems work well for Heidi because of her knowledge of and skills in applying self-determination, assertive communication, and decision making. These are foundational pieces of the self-advocacy movement, which Heidi has been engaged in for 15 years. In this interview from summer 2019, Heidi shared with Patrick Mitchell some of her personal journey.

​Patrick: How would you describe yourself?

Heidi: I am a confident self-advocate. I’m very independent and good at speaking up for myself. I value relationships with my family and friends. I’m active in my community and for the most part am living the life that I want. 

​​​Patrick: What are some things that have helped you get to where you are now?

Heidi: My attitude and skills in self-advocacy have helped me. I know my rights and I stand up for myself. I have a great job, friends, and connections in my community. 

Patrick: How did you get these skills in self-advocacy? 

Heidi: I grew up with support from my parents to stand up and speak up for myself. I’ve been involved with the self-advocacy movement for 15 years. I am a member of Advocating Change Together’s statewide network called Self Advocates Minnesota (SAM). I am active with the Self Advocacy Solutions (S.A.S.) group and I get support from the LISTEN Center. I also went through a year-long leadership program called the Olmstead Academy, where I helped other people with disabilities get connected to the community.

Patrick: What kinds of services and supports do you receive?

Heidi: I live in a group home because they help me with my medication to reduce my seizures. I get some help from my job coach for the work I do at the Grand Forks Air Force base. I also get help from my family, friends, and self-advocacy groups. 

Patrick: Do you feel that you’re getting the right kinds and levels of support?

Heidi: In some areas yes, in others no. I’m working to move out of my group home because I want more independence. I was living on my own but messed up my medications and had seizures. Now I feel that I’m being over-served. I still got alone time with my boyfriend when I had one, and with their help manage my own money, but I don’t like staff always being in my house. I was getting over-served by my job coach, but fought to get more independence. It’s at a good place now.

Patrick: How did you get more independence at your job?

Heidi: At my self-advocacy group we talk about things that bring us down. I talked about how it felt like my job coach was babysitting me. I can do the job by myself and didn’t like them hovering over me. With support from my group, I brought this complaint up to the company. They said they had to because of the law. My self-advocacy group helped me look into this and we were able to show them it wasn’t true. Now I get some assistance getting to work and getting started, but for the most part I’m doing it by myself. I no longer have one-on-ones with my job coach.

Patrick: Can you think of another example of when you had to fight to get the right kind of support?

Heidi: I had to fight to be my own guardian. My sisters wanted to control things for me, but I knew I only needed some help with financial stuff. I didn’t want them having all the power. With help from my self-advocacy group I decided on getting a court appointed co-financial guardian. 

Patrick: Was it difficult to go against what your sisters wanted for you?

Heidi: It wasn’t that much for me. I’m really good at standing up for myself and speaking for myself. At the end of the day family is family. We are still close, and it wasn’t the last time we disagreed on things.

Patrick: What else have you disagreed on?

Heidi: They didn’t want me to get a Michael Jackson tattoo because of all the stuff that came out about him. I love his music and got it anyway. For me, the tattoo is about my love of his music. 

Heidi appreciates what she has, but knows she needs to keep fighting. Throughout her life she has had to work with service providers, case managers, and family members to get the right kind and level of support. This is and always will be an ongoing process. The skills and knowledge she has gained from her involvement with self-advocacy, paired with her natural persistence, make it fight she can keep winning.