Heidi Cartier lives a fulfilling life, enjoying her work, friends, family, and connections within the Grand Forks 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 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.
Heidi has a wonderful support system but being a strong self-advocate is critical in making sure that her support system is working toward the best outcomes for Heidi. Her housing provider helps Heidi regulate her medication and reduce her seizures but can also feel like unwanted babysitters and impede on her independence. Her day service provider can assist with aspects of her job which otherwise may make it too difficult, but they can also patronize and hover over her. Her family can amplify Heidi’s voice playing the role of super advocate in getting adjustments made to her services, or they can overreach and control aspects of Heidi’s life they have no business deciding. The key to Heidi living the life she wants is managing these services and relationships to achieve the right balance, the right kind and level of support. This is what Heidi has developed and refined from self-advocacy trainings, projects, and support groups. She is skilled in knowing where to draw lines in the sand and how to stick to them.
Heidi is a member of Advocating Change Together’s (ACT) state-wide self-advocacy network called Self-Advocates Minnesota (SAM). She has gone through ACT’s year long disability leadership program that combines classroom learning and fieldwork culminating in a Disability Integration Project. Her team’s Disability Integration Project worked wit
h a handful of people to take action and change one thing in their life that they not only wanted to change, but had the legal right to change. She is active with Self-Advocacy Solutions (S.A.S.) and also gets support from friends and staff at the LISTEN Center. These groups and programs have helped her develop skills to manage her systems of support, and are an on-going resource for advice and provide her with a community she is welcomed in.
Like most people with disabilities, the best outcomes for Heidi are achieved when she gets the right kind and level of support. Usually finding this balance is an on-going process that requires constant adjustment. The perfect situation doesn’t just happen and once attained has no guarantee of maintaining. All you can do is make adjustments in pursuit of that perfect situation.
Through advocacy, hard work, support from her family and a service provider, Heidi was able to move into her own place. However, Heidi did not get enough support in managing her medication and as a result the frequency of her seizures increased. She came to the realization that while she enjoyed independent living, she also needed more care than she was getting. She transferred to a new provider who gave the right balance of support without infringing on her independence. Unfortunately, this ideal setup did not last and for business reasons, the service provider moved her to a house where she has staff present 24 hours a day. Heidi has expressed she feels she is being over served and is working to get back into her own apartment, a situation where the balance is more to her liking.
In the meantime, she makes the most of her current housing situation by keeping group home staff on task and does enjoy freedom within their structure. Heidi reports staff who under perform and holds them accountable “I call them out for being on their phones”. She fully embraces the self-advocacy viewpoint that her supports work for her. Staff works with her on her budgets and doing her own checkbook. When dating, Heidi enjoys alone time with partners. She values her privacy and after learning about her legal rights in ACT’s Olmstead Academy put a lock on her door.
Similarly, Heidi used skills and resources from her self-advocacy ties to find the right balance in employment support. She used assertive communication to stay on her day service provider about finding competitive employment out in the community. She now has a job she loves making $13.90 dollars an hour with full benefits working at the Grand Forks Air Force base. She had to fight to get the level of support she wanted in assistance with the job. She was getting over served in the sense that she was assigned a 1:1 job coach when she really needs minimal support at specific times during her shifts. Her day service provider insisted that it was the law that she receive 1:1 support. The SAM NW group looked into their claim and were able to disprove it. Heidi now gets the level of support she wants and so do many others.
In getting where she is today, it’s been important that Heidi not only find the right balance in managing services, but also in managing family relationships. Heidi doesn’t come from your average household. She was adopted from Bolivia as an infant and became the youngest of 21 adopted and biological siblings. She credits her mom and sisters as strong advocates for her growing up, particularly in getting medical needs taken care of and in supporting her professional development.
But what they wanted for Heidi didn’t always match with what she wanted. She fought with sisters for her own guardianship. They wanted to have final say over important aspects of Heidi’s life, where she only wanted assistance with financial aspects. Heidi stood firm on her stance and is her own guardian today. Heidi does realize there are areas of her life she needs help with. Instead of giving away too much power and complete guardian status to her sister, she got a court appointed co-financial guardian.
Heidi knew what she wanted and had the resolve to fight for it. Many people fear that standing up to family members and risking their relationship isn’t worth the potential reward that comes from defying them. For Heidi, disagreement doesn’t override their bond as siblings and seeking short-term compliance should not override what’s truly important to her. At the end of the day they we will love each other because “Family is Family”. Another example of Heidi asserting her own individuality over the objection of her family is her Michael Jackson Tattoo. They pleaded with her not to get it but being a lifelong, die hard fan, Heidi got it anyways.
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 on getting her the right kind and level of support. This is and always will be an on-going 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.
Written by Heidi Cartier and Patrick Mitchell