ACA Voices: Janet’s Story

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In 1996, I opened a business modifying buildings for people with disabilities using the American with Disabilities Architectural Guidelines (ADAAG). I owned and operated the Accessibility Center of South Carolina for several years as a single mother of four without incident.

Being a responsible parent requires intention, and I knew that; however, what I didn’t know was that health care would require great sacrifice. I am living with a form of Muscular Dystrophy that enabled insurance companies to extort profitable health coverage from a condition that was and is more inconvenient than truly life threatening. In 2002, I was unable to afford health insurance because of this.

I had been consulting for the City of Charleston Legal Office on issues related to civil rights and access for people with disabilities, and this connection with the City of Charleston allowed me to apply for a full-time position in February of 2004. I closed my business after 8 years of service to South Carolina. My pre-existing condition would not have been an issue after the passage of the ACA 5 years later. The insurance companies’ concerns for my health were for naught, yet they impacted my life without regard. ACA_LoseCov-2

I support the Affordable Care Act (ACA) because the ACA removed the barrier for those with pre-existing conditions. It enabled me to insure my children after the age of 18 with no caps and obtain screenings without co-pays. As a single mother, I dedicated my dreams, my career, and all my efforts to providing for my four children, and health care is part of that. I refuse to let my children be limited in their life choices due to their pre-existing medical conditions that otherwise is merely inconvenient- for three of my four children also share my diagnosis of Muscular Dystrophy.

The ACA was a breath of fresh air for families like mine; I now know my children will not be denied health coverage due to a preexisting condition, and would also remain covered under my insurance until the age 26. I find it cruel to have this relief pulled out from underneath my household’s foundation by legislators whose insurance policies will remain unaffected if the ACA is repealed. It is my duty as a constituent to share my perspective, and it is my representatives’ job to hear my concerns and add them to the concerns of many others. I am following our elected officials’ votes, and I am angry that the votes I am witnessing are not a collective representative of our state, or our nation’s needs. Please, for my family and many other families like my own, do not repeal the peace that the ACA has brought us- especially without providing us any guarantee in the form of a replacement plan that is well thought out, inclusive, and affordable.

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