Legislation Introduced to Help Children

On June 20, Representative Joe Barton from Texas and other colleagues introduced the “Advancing Care for Exceptional Kids Act of 2014” (H.R. 4930) to help coordinate care for children with medical complexities while on Medicaid.

There is an urgency to innovate and improve care for children with medical complexities which is a rapidly growing patient population. Today, one in 25 children and their families are dealing with medically complex medical issues such as children with cancer and children with thousands of other different conditions such as congenital heart disease, cystic fibrosis, and Down syndrome as well as helping the many children born prematurely who have a variety of lifelong chronic challenges.

The bill voluntary for states, providers, and families would create nationally designated children’s hospital networks that would coordinate the full range of care. Children’s hospitals would anchor these networks because of their expertise and experience in treating the unique and highly specialized needs for the children.

Reports and analyses from the Children’s Hospital Association documents common gaps in care faced by children with complex medical conditions on Medicaid who often cross state lines to access specialized care.

Medicaid’s state-by-state variability creates a fragmented and unnecessarily burdensome system lacking in care coordination, quality measures, and cost containment. About two-thirds of the three million children with medical complexity are covered by Medicaid and represent nearly 40 percent of Medicaid costs for kids.

The bill was referred to the House Committee on Energy and Commerce.


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