Rare Disease SC

Opportunities to Improve Care for Children With Rare and Complex Conditions When Traveling Across State Lines

The majority of children with medically complex conditions, including rare disorders, depend on the Medicaid program for their health care coverage. The Advancing Care for Exceptional Kids (ACE Kids) Act is legislation that was signed into law in 2019 and will begin to be implemented in October 2022. This is what implementation of the ACE Kids Act means and how you might be able to take advantage of the benefits of this important law:

  • Beginning on October 1, 2022, states have the option to establish (as a state plan amendment) specially designed health homes for children with medically complex conditions. States that opt to create these health homes will receive a higher federal matching rate for their related Medicaid expenses (15 percent above regular matching rate for the state, not to exceed 90 percent) for six months. The bill also provides $5 million for grants to states to help them plan their Medicaid amendments.
  • Medicaid health homes provide targeted and coordinated care for patients with chronic conditions who are enrolled in Medicaid. The goal of health home providers is to integrate and coordinate all primary, acute, behavioral health, and long-term services and supports to treat the whole person.
  • To qualify as a health home, providers and health teams must demonstrate the ability to coordinate prompt care for children with medically complex conditions, develop an individualized comprehensive pediatric family-centered care plan, coordinate access to subspecialized care, and coordinate appropriate care with out-of-state providers.

To learn more, the Children’s Hospital Association has created an fantastic toolkit with more information about the ACE Kids Act. You can also visit the Centers for Medicare & Medicaid Services website to read the official guidance on how states can pursue a state plan amendment.