A central Iowa woman is in Washington D.C. today lobbying on behalf of her six-year-old daughter who has a serious neurological disorder.
Alicia Karwal of Adel, says she’s meeting with Senators Chuck Grassley and Joni Ernst, Congressman David Young and any other lawmakers who will support efforts to help kids with complex medical conditions in rural states get the treatment they direly need.
“As we’re here in D.C., we’re really hoping to thank them for sponsoring the ACE Kids Act, or Advancing Care for Exceptional Kids Act,” Karwal says. “It really is out there to promote regionalizing care for exceptional children.”
The bipartisan bill aims to create networks of pediatric providers to improve care for children with medically complex conditions while reducing unnecessary costs. Karwal’s daughter, Sophia, has cerebral palsy which permanently affects body movement, muscle coordination and balance. Karwal, a former special education teacher, says she’s been fortunate to get the needed care for her daughter in Des Moines but many other children in more distant communities aren’t as lucky.
“When you come from a state like Iowa that is more rural, we don’t necessarily always have the pediatric specialists in the state available that our children need,” Karwal says. “This bill would help coordinate the care for our children needing specialty care that may not have all of the specialists in-state.”
Karwal had a difficult pregnancy and Sophia was diagnosed with cerebral palsy when she was eight months old. Initially, she couldn’t even sit up, but an aggressive treatment plan over the past several years has helped her achieve a list of milestones with the help of multiple specialists.
“She had a lot of difficulties with eating and drinking and so the team was really there, both physicians and therapists, to guide us and help her succeed in those areas,” Karwal says. “Obviously, she’s grown. She’s continued to defy odds. She now walks. She talks. She’s in an educational setting with special educators. She’s really defying those odds that were against her.”
Some 3 million children in the U.S. have conditions that are considered medically complex, and of that population,2 million rely on Medicaid for access to specialists, therapists and hospitals. They represent six percent of all children with Medicaid coverage, but account for 40 percent of Medicaid’s spending on kids.