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Commentary: New law will help chronically ill kids in Central Texas

Jun 7, 2019
Column

U.S. Rep. Roger Williams and Chris Born
Austin American-Statesman
Commentary: New law will help chronically ill kids in Central Texas​

Congress recently came together in a bipartisan effort to pass the Advancing Care for Exceptional (ACE) Kids Act, which directly benefits the kids and families that Dell Children’s Medical Center serves here in Central Texas. The ACE Kids Act creates a new model that improves care for children with complex medical needs who are covered under Medicaid, while also reducing the program spending totals.

A small percentage of the millions of children covered under Medicaid have very complex medical issues that account for a disproportionate amount of the spending. These exceptional children also face additional challenges, especially when finding the right care requires them to cross state lines. The ACE Kids Act improves coordination across multiple providers and services, which increases options and ease of access.

This innovative new model would expand access to patient-centered, pediatric-focused coordinated care programs that are designed for children with medical complexity.

The ACE program has a proven success record, and has been tested across 10 different children’s hospitals with eight different Medicaid programs. In the first full year of operation with the ACE Kids method, the test group coordinated care for 8,000 children, reduced overall costs by 2.6 percent and improved the overall patient experience. The ACE Kids Act will enable these innovations to be shared with medical providers throughout the country.

One of the premier healthcare providers for children and adolescents ishere in Central Texas, Dell Children’s Medical Center. For nearly 12 years, Dell Children’s Medical Center has served over 77,000 kids annually in their inpatient and outpatient departments with over 40 specialized programs.

As the only comprehensive children’s hospital and level 1 trauma center in Central Texas, the medical center uniquely cares for children with complex medical needs in a 46-county service area. Passage of this act will provide national consistency and a common model for care already being provided for children with complex medical needs through the Children’s Comprehensive Care Clinic at Dell Children’s Medical Center. The ACE Kids Act will also simplify the process and make it easier for children to cross state lines for medical care, if needed.

Children like 4-year-old Rowan have been cared for by the specially trained staff at Dell Children’s since she was born. Rowan’s complex medical condition requires specialized, continuous care at at the hospital and its Children’s Comprehensive Care Clinic, where the nurses and doctors have a special relationship with her. Her condition also requires out-of-state medical care.

Rowan is an energetic little girl who loves to laugh and play, despite the pain she experiences every day. Rowan was diagnosed with recessive dystrophic epidermolysis bullosa as a newborn, which means that she is missing the “glue” that holds her skin to her body. The surface of her body can blister and shear off, leaving wounds like second-degree burns, so Rowan must be bandaged from the neck down to cover wounds and prevent infection. Rowan’s family is thankful for the passage of the ACE Kids Act. This important piece of legislation supports the coordination of her care in Austin and in other states and helps advance innovation in the quality, cost and delivery of care at Dell Children’s Medical Center and other children’s hospitals.

Stories like this further prove why we must continue to innovate and improve how we care for our most vulnerable, especially for the families who are working through some of the most complex pediatric issues. We are proud to be leading this effort in Central Texas and look forward to sharing our successes with the country.

Williams represents Austin in the U.S. House of Representatives. Born is president of Dell Children’s Medical Center.

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