[Source:  Disability Scoop]

Finding care for children with medically complex or rare conditions can force parents to tap into networks of highly specialized physicians and hospitals scattered around the country.

This is especially challenging when the children are covered by Medicaid, because each state-run program has a different benefit package, payment structure and provider network. Conflicting regulations and paperwork requirements can delay treatment and lead to unnecessary hospitalizations. Medicaid’s state-based rules also have thwarted efforts to develop a national clinical database researchers could use to find ways to improve the care of children with rare conditions.

A new bill in Congress would amend the 50-year-old Medicaid law to make it easier for health care providers in different states to coordinate the complicated care of these kids.

The proposal — the Advancing Care for Exceptional Kids Act — also calls for the creation of a national database of Medicaid claims data that researchers could use to study complicated conditions that affect one in 25 children nationwide.

Sponsored by Rep. Joe Barton, a Republican from Texas, and co-sponsored by 116 other members in both houses of Congress, the proposal has broad bipartisan support. Advocates expect it to be introduced in the next few weeks.

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