Stories

Beyond the Rhetoric: What the ACA Means for My Family

Rodgers family: two parents, a boy and a girl.

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.

The Wardyga Family: Justice for Jason

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The second anniversary of the Affordable Care Act (ACA) forced me to reflect on some personal and painful experiences that followed the births of my full term twin sons, 26 years ago. I never imagined that landmark legislation like the ACA would pass in my lifetime, after years of advocating for what I refer to as “Justice for Jason.”

The Paxton Family: Doing What it Takes

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Eleven-year old Chance’s cochlear implants don’t get in the way of him doing all the things he loves: playing soccer, going camping with his scout troop, and being on the city swim team. Thanks to his family’s commitment to ensuring that Chance got the services and supports needed, he is doing well in a regular classroom and playing with friends in the neighborhood. However, the path to this success story was long, costly, and filled with many roadblocks.

The Oguagha’s Story: a few dollars too much…

15-year-old Taylor is a typical teenager who happens to have autism.

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With limited means, Pamela Oguagha has been resourceful enough to create a life full of enriching, therapeutic activities for her daughter Taylor, along with educationally and medically needed services. But she finds the process overwhelming. “Because my daughter is high-functioning, less is available.”

The Rodgers: medical debt changed their lives

Matthew and Laura were born with a degenerative mitochondrial disease.

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Rylin and David Rodgers were shocked at how quickly medical debt changed their lives. They had college educations, good jobs with health insurance, and comfortable savings before their children were born. Unaccustomed to asking for help, Rylin once went three days without eating as she sat by her son’s hospital bed. “In retrospect I should have asked,” she says, “but no one offered, either. I think we looked ‘too good’ to need help.”

The Wilsons: "Forced poor" to pay for care

An antibody deficiency has left Hunter unable to attend school.

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Amy and Tim Wilson describe themselves as “forced poor.” Their annual income of $25,000 makes it a constant challenge to support a family of five, but it keeps them eligible for the Medicaid program that covers most of their son Hunter’s ongoing medical expenses. “I would be cutting my own throat to
go back to work,” says Amy.