Many of the families in the study were low or middle income. More than a third had incomes that were less than 125 percent of the federal poverty threshold, which was about $22,000 for a family of four in 2009.
"They do the worst," Bethell said. "They need to be on public insurance. Public coverage is better for lower-income people."
In 2014, those families could be covered by Medicaid if they live in states that take advantage of federal funding through the Affordable Care Act to expand their programs. Bethell said the switch could ease the strain on low-income families that have children with special health care needs.
"It's going to vary a lot [state-by-state] because of how much freedom the states have," she said. "We're going to have to track it closely to see."
To learn more about children with special health care needs, visit the Data Resource Center for Child & Adolescent Health.
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