Jacksonville family taking fight for Medicaid funds to Capitol Hill

One Jacksonville family is taking their story to Capitol Hill to urge Congress to protect -- not cut -- children’s Medicaid funding as proposed in the American Health Care Act of 2017 and the Better Care Reconciliation Act of 2017.

The Sproles family's effort in Washington, D.C. is part of a broad national push to address key health care needs for children through the Speak Now for Kids Family Advocacy Day.

As scientific advances have made it possible for more kids to survive serious conditions, a growing number of children are relying on Medicaid to help meet their complex medical needs.

Of the more than 30 million kids enrolled in Medicaid, at least 2 million have medical conditions like congenital heart disease, cerebral palsy and cancer.

In 2012, Norah Sproles was born with spina bifida in Jacksonville. She underwent surgery at Wolfson Children's Hospital to close the opening in her spine and later required a second surgery to implant a shunt to drain fluid from the brain.

Further complications revealed there was another defect located at the base of her skull at the spinal cord.

More surgeries followed, including the placement of a breathing tube to protect Norah’s airway, and a feeding tube to help her eat until she was able to swallow on her own.

Even now, Norah receives care from 10 pediatric physician specialists coordinated by the Bower Lyman Center for Medically Complex Children at Wolfson Children’s.

"The care coordination the center provides has been invaluable, from helping us with insurance to making sure that her medical needs are met," said Megan Sproles, Norah's mom. "We're also thankful for Medicaid. We'd be so deep in the hole without it."

On Thursday, Action News Jax spent time as Norah went through some of her rehab therapy to reach new milestones.

"We are very excited when she can do little tasks," Megan Sproles said.

Her family told us the smallest accomplishments are considered tiny miracles.

"Things that are easy for a typical child, we praise in Norah," Megan Sproles said. "We have to work hard at sitting up at the table and eating food."

Norah and her family will meet with their members of Congress to share how Medicaid coverage benefits her care and how the House and Senate health care bills could negatively affect their lives.

"Medicaid helps us live a daily life and give her the quality of life that we would hope for her," Megan Sproles said.

Even her physicians held a special "good luck" celebration as she prepares to leave for Washington D.C.

Wolfson Children's Hospital Executive Director, Megan Denk told us 56 percent of their patients rely on Medicaid. The hospital isn't reimbursed 100 percent for their services.

"Our purpose to go to Washington, is to put a face to this issue," Denk said. "I know they have been crunching numbers, but a family like Norah's are the families that really need the help."

According to a recent report by Avalere Health, the U.S. House-passed American Health Care Act, on which the Senate bill was modeled, would cut Medicaid funding for children by at least $43 billion over 10 years by eliminating Medicaid’s open entitlement and replacing it with a capped system that limits Medicaid funding to states.

Avalere estimates that Florida could see a funding reduction of $2.2 billion by 2026. As children represent nearly half of all Medicaid enrollees (but less than 20 percent of program costs) a severe cut to Medicaid funding would disproportionately affect them.

"Our nation has finally reached a record high level of health care coverage for children – 95 percent," said Michael D. Aubin, president of Wolfson Children's Hospital. "If the Senate agrees to turn Medicaid into a capped program, cutting children's Medicaid funding by billions of dollars, then we will jeopardize children's health care, their health outcomes and ultimately their futures."

The ACE Kids Act of 2017 would save Medicaid an estimated $13 billion over 10 years through coordinated care delivery crossing state lines. The bill is supported by a bipartisan group of 17 senators.

A House of Representatives version is expected soon.

Cox Media Group