Families Meet with Congress to Improve Health Care for the Nation’s Sickest Kids

June 15, 2015

Parents Join the Children’s Hospital Association To Advocate For Children With Complex Medical Conditions Who Are Covered by Medicaid

Amy Knight, Chief Operating Officer, Children’s Hospital Association

(Washington, D.C., Monday, June 15, 2015) – More than 40 child patients and their families will join the Children’s Hospital Association in Washington, D.C. for Speak Now for Kids Family Advocacy Day on June 15 and 16, to speak to the importance of improving health care for the nation’s sickest kids – children with complex medical conditions who are covered by Medicaid.

The two-day event will allow these families to meet with their members of Congress to share their personal health care stories and ask them to pass the bipartisan ACE Kids Act of 2015 (S. 298, H.R. 546).

Nationwide, 3 million children (1 in 25 kids) have complex medical conditions and two-thirds of them rely on Medicaid, the largest insurer of children (~30 million).  Children with medical complexity:

  • Have diagnoses that are multiple and varied, from cerebral palsy to cystic fibrosis to congenital heart defects and childhood cancers.
  • Are under the continuous care of multiple health care providers in children’s hospitals and other settings, often in more than one state.
  • Rely on expensive procedures, treatments, medications, equipment and therapies to maintain their health.
  • Experience frequent acute and chronic illness that are difficult and time-consuming to manage and result in hospital readmissions.

The ACE Kids Act of 2015 is a bicameral, bipartisan bill in Congress that would help organize and deliver care differently for children with medical complexity and save an estimated $13 billion over its first 10 years. It would:

  • Create nationally designated children’s hospital networks designed around the specific needs of children with medical complexity
  • Facilitate a full array of care across state Medicaid programs for families who travel for treatment (currently Medicaid programs vary by state)
  • Gather national data on complex conditions to help improve care and treatment
  • Provide flexibility and choice – states, providers and families choose whether to opt in to the networks

The population of children with medical complexity is growing at 5 percent annually, outpacing the population growth of children overall. While children with medical complexity comprise a small part of the pediatric population, they represent a large share of the costs, accounting for one-third or more of total health care spending on children.

Thanks to advances in medical treatment, a growing number of children, sometimes referred to as “NICU graduates,” are surviving conditions that decades ago would have meant early death. These advances also come with the responsibility to ensure children can access the right care, at the right time and in the right setting.

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