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Joe (pictured) and Mary Thompson had agreed to adopt Emily before her birth in 1999, and it never occurred to them to back out when she was born with spina bifida. But that same year, their residential remodeling business in Overland Park, Kan., went under, prompting job changes that left the family searching for health coverage with a child who was uninsurable.
The insurers were willing to cover the Thompsons and their older daughter, but not Emily, who was later discovered to have mild autism as well, or her 13-year-old brother (pictured), who had a diagnosis of attention deficit disorder.
Starting Sept. 23, the insurers will not be able to do that, as the new health care law prohibits them from denying coverage to children under 19 because of pre-existing health conditions. In 2014, the change will extend to people of all ages.
“It really is a pinch-me moment,” said Mrs. Thompson, who is 50. “Could it possibly be, after all these years of fighting and jumping through hoops and trying to find the right place to help us out, that she could just be put on our policy with her sister and not be discriminated against any more?”
Mrs. Thompson cannot yet answer her question. She is waiting for clear information from her insurer, Humana, about how much it will cost to add Emily to the family’s $565-a-month policy. One agent told her on the phone that rates could be as much as five times normal prices, she said, effectively making Emily just as uninsurable as ever.
The law does not prevent insurers from charging more to cover those with chronic conditions until 2014. Some carriers have responded to the provision by ending the sale of child-only policies.
The Thompsons were fortunate that Children’s Mercy Hospital, across the Missouri line in Kansas City, agreed years ago to take Emily as a charity case for her annual rounds of testing, which run nearly $10,000. They were charged only $10.
But they have lived in fear that Emily would wind up in an emergency room, or that the recession would sap the hospital’s generosity, or that Children’s Mercy would disqualify them if their income rose. Emily had on several occasions been kicked off the state’s Children’s Health Insurance Program because the family’s income nudged just above eligibility limits.
“Every family has a bit of anxiety around tax time,” Mrs. Thompson said. “We’ve had the additional stress of wondering where we fall regarding qualification cutoffs.”
Beth Haller, Ph.D., is Co-Director of the Global Alliance for Disability in Media and Entertainment (www.gadim.org). A former print journalist, she is a member of the Advisory Board for the National Center on Disability and Journalism (https://ncdj.org/). Haller is Professor Emerita in the Department of Mass Communication at Towson University in Maryland, USA. Haller is co-editor of the 2020 "Routledge Companion to Disability and Media" (with Gerard Goggin of University of Sydney & Katie Ellis of Curtin University, Australia). She is author of "Representing Disability in an Ableist World: Essays on Mass Media" (Advocado Press, 2010) and the author/editor of Byline of Hope: Collected Newspaper and Magazine Writing of Helen Keller (Advocado Press, 2015). She has been researching disability representation in mass media for 30+ years. She is adjunct faculty in the Disability Studies programs at the City University of New York (CUNY) and the University of Texas-Arlington.