SPRINGFIELD, Ill. (WCIA) — Families across the nation could get more support if their child is diagnosed with Down syndrome due to a bill sponsored by a Central Illinois member of congress.
Rep. Nikki Budzinski (D-IL) is sponsoring a bill with Rep. Marc Molinaro (R-NY) that would require insurance companies to provide more health care coverage options and resources to local support providers to families after their child receives a Down syndrome diagnosis.
Budzinski said she knows personally families need accurate information to navigate their child’s health care.
“When my nephew, Noah, was born, he was diagnosed with Down syndrome. And at just four months old, he had to undergo open heart surgery,” the congresswoman said. “After experiencing these challenges in my own family, I know how important early intervention is for individuals with Down syndrome.”
Down syndrome advocates say evidence-based and culturally appropriate resources is necessary for families.
“Despite being the most common chromosomal condition, families still receive limited or incorrect information and resources about their new baby with Down syndrome,” Cyrus Huncharek, the director of policy and advocacy for the National Down Syndrome Congress, said. “The National Down Syndrome Congress has long believed that information is power, and this bill will empower families to make decisions that are in the best interest of their loved one with Down syndrome.”
Down syndrome is the most common chromosomal condition in the United States. The CDC estimates around 6,000 babies each year are diagnosed with Down syndrome.