• Article
  • July 19, 2017

Children's Hospital Patients Talk Health Care with Members of Congress

Patients and families from the nation’s children’s hospitals met with their representatives on Capitol Hill to urge them to protect Medicaid.

Patient advocates prepare to meet their legislators. Credit: Kevin Allen.
Patient advocates prepare to meet their legislators. Credit: Kevin Allen.

The fear of bankruptcy, losing the family home and wondering how they will take care of the medical needs of their child: These are just a few of the concerns parents voiced at Speak Now for Kids Family Advocacy Day (FAD) in Washington, D.C., July 12-13. Children's hospitals' patients, many with complex medical conditions, and their families met with their representatives in Congress asking them to protect health care coverage for the more than 30 million children Medicaid covers.

The annual event drew 48 child participants and representatives from 51 children's hospitals. Polly and Dan Vanderwoude traveled from New York with their 7-year-old daughter Olivia, representing Maria Fareri Children's Hospital at Westchester Medical Center in Valhalla, New York. Olivia was diagnosed with Aicardi syndrome when she was 2 months old. The rare condition is characterized by underdeveloped tissue connecting the left and right halves of the brain.

"I never thought our family would be in the position to need a safety net program like Medicaid," says Polly. "We might not be who you think of when you think of Medicaid. The safety net is there for all Americans, especially when they experience an unexpected tragedy of having child with severe special needs, and Medicaid has been a lifeline for Olivia and for our family."

A home care nurse takes care of Olivia at night, allowing her parents to rest and function better at work, care for their son and meet Olivia's needs. "Olivia was sicker than my husband and I even realized," Polly says. "Once we had eyes on her 24/7, the nurses were able to deep suction her at night, give her extra nebulizer treatments and monitor her pulse ox."

The care at home meant fewer hospital visits and stays for Olivia. She was discharged sooner because a nurse could treat her at oxygen at home and facilitate more complicated care. "The home care has allowed her to improve, and it's been more cost effective for her care as well," Polly says.

The efforts of the Vanderwoudes and FAD attendees came at a crucial time in the health care debate.  Media coverage spread across the country through local television news, and articles including People magazine and The Washington Post, and radio segments such as this one by WBUR Boston.

According to children's hospitals, Congress should improve the effectiveness of Medicaid for children through thoughtful reform. A bipartisan bill introduced this year by Sens. Charles Grassley, R-Iowa, and Michael Bennet, D-Colo., the Advancing Care for Exceptional (ACE) Kids Act of 2017 (S. 428), would improve care for children with the most medically complex and high-cost conditions in Medicaid. The ACE Kids Act would also reduce spending through coordination of care across multiple providers and services, and help patients access out-of-state care.

Send questions or comments to magazine@childrenshospitals.org.