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Have you ever not been believed when you’ve been ill? Have you been frustrated with accessing the care you need? Have you struggled to find the correct diagnosis and support for your condition? Have you fought the systems of public benefits to access the supports those systems are supposed to provide? Have you ever felt alone and isolated as you fought to get the care and benefits you need?
Have you ever wished someone could help guide you through your healthcare journey?
I sure have. My frustrating healthcare journey started at birth and continued into a childhood marked by illness and injury. People thought I was “just” clumsy or sickly. However, I was often actually injured and frequently quite ill. Bronchitis was an annual occurrence, and I contracted pneumonia twice before puberty. Despite these real events, my reports of pain and sickness were routinely dismissed as part of childhood “growing pains,” or it was assumed I was “faking it.” At age nine I broke my ankle. But my parents, who did not believe my pain was real, delayed for three days before taking me to see a doctor. There are many more examples when I just wasn’t able to get the care that I needed when I needed it.
Beginning in 7th and 8th grades, I began strenuously advocating for mental and medical healthcare. However, asserting myself was met with resistance. Despite my school calling home numerous times about my depressed mood, self-injurious behavior, and weekly absences, I was still denied help I required. By 9th grade, I mostly stopped attending school, and after 10th grade I dropped out altogether. My parents then expected me to work or go to community college, despite the fact that my untreated conditions prevented me from functioning. I was given an ultimatum: find work, go to college, or leave home.
I left home at 17. Eventually I ended up in a hospital, where I was told by a sympathetic hospital admin that I should apply for Supplemental Security Income (SSI) and Medicaid. Up to this point, I had had no idea that such programs existed.
It turned out that these programs, which were supposed to help people in need, weren’t easy to access. Even after enrolling in Medicaid and SSI, I was unclear how these programs actually worked. As a result, unscrupulous medical providers took advantage of my naivete by billing both Medicaid and me. It was years before I learned that double billing was fraud.
After years of struggle I was fed up with how difficult it was to get medical help. Further, I was disillusioned by how these programs — which were supposed to help people in need — failed fundamentally. Even after enrolling in Medicaid, I was frustrated by how little guidance was offered on program rules or how I could even access my benefits. I struggled through these systems of aid with some successes and some failures. I started researching Medicaid’s policies, rules, and other fine print. Digging into the ins and outs of Medicaid was my sole focus for weeks on end.
During this time I discovered I wasn’t the only person out there who was sick and fighting to get help. The experience we all shared was that systems of aid exist but they aren’t easily accessible by disabled people. Besides sharing stories of frustration, we shared information — wins, losses, tips on navigating the system, and how best to advocate for ourselves and others.
For more than two decades I have been learning from these experiences and this shared knowledge from those of us reliant on these aid systems. I would like to help you avoid the pitfalls into which I fell, and to help you understand that you are far from alone. Since 2015 I have been sharing my knowledge via peer support and guidance, workshops, conferences, and seminars. I am honored to share this knowledge with you, and to help support you in your healthcare journey.