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    Help for kids with complex conditions

    Key members of a House of Representatives health subcommittee say they are determined to push out legislation intended to pay for better care coordination under Medicaid for children with complex medical conditions. However, key questions are who will do that coordination and how the money will flow.

    A new proposal before the House Energy and Commerce Subcommittee on Health would provide an option to allow states to pay for comprehensive care coordination for exceptional children through health homes, such as pediatricians, pediatric specialists, children’s hospitals, and community centers.

    These health homes would also coordinate access to out-of-state care as medically necessary, according to a memo from the subcommittee, which held a hearing on the proposal in early July.

    Such an arrangement could lead to big changes because 3 million US children have complex conditions and 2 million of those are under Medicaid. They are about 6% of Medicaid children but account for 40% of all Medicaid spending on children, according to statistics in the original legislation.

    The new draft is a reworking of legislation proposed last year Advancing Care for Exceptional Kids (ACE Kids) Act of 2015 (HR 546 and S 298), which was pushed by the Children’s Hospital Association, that would have assigned such children to a “nationally designated children’s hospital network” unless the child or family opted not to participate.

    Members of Congress got feedback from a range of stakeholders. The National Association of Medicaid Directors (NAMD) recently said the bill, among other things, would create a complex and burdensome new 3-way arrangement among the federal government, the states, and the children’s hospital network.

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    The Medicaid Health Plans of America said the proposal would move very sick children from highly coordinated managed care plans to provider networks that have no history of providing basic care and cost management.

    In light of such objections, a “transformation” of the bill, as sponsor Joe Barton (R-TX) called it, was released not long before the hearing, with Barton saying it had changed from facilities centric to family centric.

    The new draft says payments to the designated providers may be made on a per-member, per-month basis and may, but are not required, to include shared savings models, pay-for-performance models, contingency awards for reducing emergency department use, or other incentive-based approaches. States will provide guidance on the policy and procedures for accessing care out-of-state for such children.

    In a packed hearing room with many in the audience wearing large stickers supporting the ACE Kids bill, Rep. Joseph Pitts (R-PA), the subcommittee chair, said the current draft represents 1 approach, but that the subcommittee is open to feedback and other ideas.

    The legislation’s sponsorship is bipartisan, something prized in today’s divisive Congress. Key champions of the bill on the subcommittee, Barton and Kathy Castor (D-FL), were highly complimentary of each other’s work.

    With 218 House members and over 30 senators signed on as co-sponsors of the previous version, Barton voiced hope that the bill can be passed in this congressional session. He said he and others have been working on the bill for 4 years.

    Barton noted the draft does not have a requirement for a quality measures at the federal level for these health homes.

    Although all the witnesses at the hearing agreed on the need for such measures, Matt Salo, executive director of the NAMD, cautioned against legislating specific measures until people are sure what they should be. It is important, he said, to look at the data we have to focus on a core implementable set of measures that can be done by providers.

    For more information about the hearing, go to bit.ly/Ace-Kids-Act.


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