Press Releases/Columns

Reps. Joe Barton (R-TX), Kathy Castor (D-FL), Anna G. Eshoo (D-CA) and Jaime Herrera Beutler (R-WA), unveiled the Advancing Care for Exceptional Kids Act of 2015 (ACE Kids Act), H.R. 546. A companion bill was introduced in the Senate, led by Sens. Charles Grassley (R-IA) and Michael Bennet (D-CO). The bills will help coordinate care to ensure optimal outcomes for children with complex medical conditions on Medicaid, while helping to contain costs. Other original cosponsors in the House and Senate include, Rep. Gene Green (D-TX), Rep. Dave Reichert (R-WA), Sen. Rob Portman (R-OH), Sen. Bill Nelson (D-FL), Sen. Roy Blount (R-MO) and Sen. Sherrod Brown (D-OH).

Most of the nation’s sickest children depend on pediatric specialists whom they access through Medicaid. The state-by-state variability of Medicaid creates a care system that is fragmented and unnecessarily burdensome for these children and families who often cross state lines to access care.

“I truly believe that this bill will become law sometime this year. The simple reason is the substance of the bill. Everyone wants to make sure our children are healthy and happy. It is what America is all about and it is what the ACE Kids Act does. It cuts through all the bureaucratic red tape, tries to save the taxpayers some money, but it also gives parents the best option to treat their medically complex child. Not only are we trying to improve access to and the quality of care for these kids, we also think that this network model will produce savings for the American taxpayer,” said Rep. Barton.

The lawmakers agreed that there is a growing urgency to address the gaps in care coordination for these millions of medically complex kids.

“Children with complicated medical conditions require a high level of health care which generates significant costs and often lacks proper coordination,” said Rep. Eshoo. “Two million children are insured by Medicaid with complicated conditions—six percent of all Medicaid children—and they account for 40 percent of Medicaid costs nationwide. The ACE Kids Act will alleviate state-by-state barriers for children with complex medical conditions and relieve families of the burden of navigating the coordination of care. Children will be able to see the appropriate care specialists, regardless of what state they live in.”

“The ACE Kids Act is bipartisan and I urge my colleagues in the House and Senate to pass this legislation to coordinate state-by-state Medicaid services that will contain costs, but most importantly, better serve our nation’s sickest children,” Rep. Castor said. “This is the right thing to for these children and their families so they can focus on their health, not a logistical burden.”

Rep. Herrera-Beutler’s young daughter has a medical complexity. The Congresswoman joined as a co-sponsor of ACE Kids knowing it will help her child and millions of others nationwide get access to the best children’s hospitals and the lifesaving care they provide– regardless of the state where they live.

Important facts about the ACE Kids Act:

• The ACE Kids Act allows for the creation of nationally designated children’s hospital networks to serve these children. These networks would include and coordinate the full range of home, primary, ambulatory, acute and post-acute care/providers. Based on the health needs and family preference, each eligible child will be matched with a network.
• Children’s hospitals would “anchor” these networks because of their expertise and experience in treating the unique and highly specialized needs of these children. The hospital networks would enable the gathering of national level data on rare and complex conditions to determine best practices and drive continued improvement in care while identifying potential savings.
• The ACE Kids Act is voluntary for states, providers and families. Over 60 of the nation’s leading children’s hospitals and numerous provider and patient groups have endorsed this legislation.
• The nationally designated children’s hospital networks will produce savings through increased efficiencies, including reducing hospitalizations and emergency room visits while providing the array of outpatient and community services and supports needed by children with medical complexity.