Congress Passes Bill to Improve Care for Kids with Complex Medical Conditions

Congress Passes Bill to Improve Care for Kids with Complex Medical Conditions

According to an April 3 press release, bipartisan legislation to improve health outcomes and care coordination for children with complex medical conditions in Medicaid, led by U.S. Senate Finance Committee Chairman Chuck Grassley of Iowa and Sen. Michael Bennet of Colorado, unanimously passed in the Senate after passing the House of Representatives the previous week.

“Since the start of Medicaid, more children are surviving life threatening conditions, including prematurity, childhood cancer, and complications associated with Down syndrome. We can all be grateful for that fact. However, as a result, some of these children have ongoing complex medical needs. On average, these children see 5-6 specialists and up to as many as 20-30 allied health professionals. Parents are often overwhelmed at the scope of that care,” Grassley said. “The Advancing Care for Exceptional (ACE) Kids Act will reduce the burden on families and caregivers by improving the coordination of medical care for these children. In addition, better coordination of care will reduce emergency room visits and hospitalizations and thereby reduce health care expenditures. Better coordination of care and healthier children is a great prescription.”

“This legislation will help ease the burdens placed on families of kids with complex medical needs. In finally prioritizing this issue, Congress is ensuring that families will receive the help they need to coordinate multiple appointments and providers for their children,” Bennet said. “The ACE Kids Act will help make it possible for Children’s Hospital Colorado – and hospitals like it across the country – to coordinate care and ensure children with complex medical conditions receive the treatments they need.” 

The outdated fee-for-service health care system has resulted in fragmentation of care for children with medically complex conditions. ACE Kids provides an option for states and families to provide improved coordination of care with the promise of better health outcomes. This legislation is supported by more than 30 major national children’s advocacy groups and physicians’ and health care organizations.

The summary of the House bill, H.R. 3325, states:

This bill amends title XIX (Medicaid) of the Social Security Act to establish a state Medicaid option to provide for medical assistance with respect to coordinated care provided through a health home (i.e., a designated provider or team of health-care professionals) for children with medically complex conditions. A state shall make payments for such health-home services regardless of whether they are provided through a fee-for-service or managed-care system. For an initial period of eight fiscal-year quarters, the federal matching rate applicable to such payments shall be increased by 20 percentage points, not to exceed 90%.

A state that exercises this option shall specify its methodology for determining payment and evaluating quality of care, in accordance with requirements established by the bill. In addition, the state must meet specified requirements regarding hospital referrals, out-of-state providers, education and outreach, data collection, and reporting.

The Centers for Medicare & Medicaid Services must issue guidance on best practices for using out-of-state providers to provide care to children with medically complex conditions.

The Medicaid and Children’s Health Insurance Program (CHIP) Payment and Access Commission must report to Congress and to the Department of Health and Human Services on specified matters related to children with medically complex conditions.

Close Menu