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Showing posts from June 23, 2013

Beyond the Rhetoric: What the ACA Means for My Family

 Printable version (PDF) On June 28, 2012, the U.S. Supreme Court ruled that the Patient Protection and Affordable Care Act (ACA) was constitutional. As the first anniversary of the Court’s decision approached, I took a step back from the rhetoric and controversy that continue to overshadow what this historic legislation means for my family and other families raising children and youth with special health care needs.

My two children -- Matthew, 16, and Laura, 13 -- have Mitochondrial Disorders, complex neuromuscular conditions. From birth, they have required extensive medical care. That care was costly, so costly that we quickly met the annual and lifetime caps imposed by our health insurance. Because of their medical conditions, Matthew and Laura joined the ranks of Americans whose pre-existing conditions made them uninsurable. My young family was locked into a world of limited choices. Fearing a gap in insurance coverage, we could not change jobs. We experienced financial hardship be…