Families Speak Now for Kids with Medically Complex Conditions

June 23, 2014

Parents Join the Children’s Hospital Association to Speak About the Importance of a Strong Medicaid Program

Jim Kaufman, Vice President, Public Policy, Children’s Hospital Association

(Washington, DC, Monday, June 23, 2014) – Nearly 30 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 24 and 25 to speak to the importance of a strong Medicaid program for children who have medically complex conditions and need access to highly-trained pediatric specialists.

The two-day event will allow these families to meet with their members of Congress and share their personal health care stories.

Members of Congress will hear directly from children and their families about the role they as leaders must play in protecting children’s access to the high quality, specialized care that millions of families count on.    

Of the nation’s 76 million children, approximately 3 million are medically complex, including those who:

  • 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 illnesses and chronic illness exacerbations that are difficult and time-consuming to manage and result in hospital readmissions.

The population of children with medical complexity is growing at about 5 percent annually, outpacing the population growth of children overall.

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. 

But these advances also come with the responsibility to ensure children can access the care they need, in order to achieve the best possible health. 

Children with medical complexity make up a very small part of the patient population, but represent a large share of health care spending on children.  They account for: One-third or more of total health care spending on children 40 percent of pediatric inpatient charges within all U.S. hospitals half of inpatient charges in children’s hospitals on average 33 percent growth in new patients in children’s hospitals (2004-2009).

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