WASHINGTON, D.C. — This week, U.S. Representatives Nikki Budzinski (IL-13) and Marc Molinaro (NY-19) introduced the Down Syndrome Diagnosis Act, a bipartisan bill to help parents and families navigate a new Down syndrome diagnosis and ensure their child receives high quality 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,” said Congresswoman Budzinski.“After experiencing these challenges in my own family, I know how important early intervention is for individuals with Down syndrome. I’m proud to introduce bipartisan legislation to ensure that every family receives the reliable information and support they need as they navigate a Down syndrome diagnosis and the critical health care it requires.” 

“Between navigating treatment options and figuring out how you’re going to pay for it, receiving a new diagnosis for your child is scary. No family should have to figure all this out on their own. My bipartisan bill, the Down Syndrome Diagnosis Act will require health insurers to provide families with the information they need to navigate a Down syndrome diagnosis and ensure their child receives the highest quality of care,” said Congressman Molinaro. 

“Despite being the most common chromosomal condition, families still receive limited or incorrect information and resources about their new baby with Down syndrome. The Down Syndrome Diagnosis Act will address this issue by ensuring that insurance plans provide up-to-date, evidence-based, and culturally and linguistically appropriate resources about Down syndrome to families. 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,” said Cyrus Huncharek, Director of Policy and Advocacy for National Down Syndrome Congress. 

According to the Centers for Disease Control and Prevention (CDC), Down syndrome is the most common chromosomal disorder in the United States, impacting about 6,000 babies every year. Despite this, parents and caretakers are often forced to figure out treatment on their own, and frequently don’t have guidance on the potential cost of these medical expenses. 

Congresswoman Budzinski’s bill will require health insurers to provide a variety of available health care coverage options as well as information on local support providers once they become aware of a Down syndrome diagnosis.  

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