My daughter Caroline was born with a rare neurological condition known as alternating hemiplegia of childhood. Only 800 people worldwide have the condition, and just getting the diagnosis took years of travel to children’s hospitals across the country.
During the early years, when we didn’t have a name for what she was going through, Caroline would cry for hours. She was unable to eat and even the slightest change in her environment caused seizures and severe pain.
We paid out of our own pockets because private insurance wouldn’t cover hospitals outside our Tampa Bay area, much less pay for many of the recommended medications and therapies. And so traveling for our daughter’s very unique condition connected us to families all over the United States. In fact, there are millions of families who struggle to coordinate care for their children with complex conditions across many states, facilities, regulations, and payment systems.
After a recent meeting with a Richardson, Texas, family whose four-year-old son has a heart defect and other health complications, Rep. Joe Barton, R-Texas, said he redoubled his efforts to get a bill passed this year to help “medically complex” cases.
Working with Democrats and other Republicans, Barton, the chairman emeritus of the House Energy and Commerce Committee, helped produce draft legislation that updates an earlier version of a bill intended to improve care for children with complex illnesses underMedicaid, the federal/state health care program that serves the poor. The changes would increase the kinds of health facilities that could coordinate such care. The earlier version had given that responsibility only to children’s hospitals.
At a hearing Thursday before the House Energy and Commerce Committee’s subcommittee on health, doctors, other health providers and a mother of a daughter with multiple conditions testified in support of the revised legislation, which would replace the original bill, known as “Examining the Advancing Care for Exceptional Kids Act” or ACE Kids Act.