Written by Nicholas Telesco, Hospice Action Network Intern:

In exciting news, the ACE Kids Act, which will alleviate coordination issues children with medically complex conditions face, has become law! The bill, which was included in the Medicaid Services Investment and Accountability Act of 2019 (H.R. 1839) was introduced by Reps. Paul Ruiz (D-CA-36), Markwayne Mullin (R-OK-2), Kurt Schrader (D-OR-5), and Fred Upton (R-MI-6) in March of this year. The bill passed Congress with broad bipartisan support and was signed into law by President Trump in April.

Medicaid covers over 37 million low-income children throughout the nation. While children with medically complex conditions constitute a fraction of Medicaid recipients, Medicaid coverage is invaluable to this vulnerable population. Nearly two-thirds of the three million children with medically complex conditions rely on Medicaid coverage to treat cerebral palsy, cystic fibrosis, HIV/AIDS, anemia, sickle cell disease, muscular dystrophy, spina bifida, epilepsy, and Down syndrome. These children require a significant amount of care, which often includes five to six specialists and twenty to thirty health professionals on their team. The burden to coordinate and manage this vital team, which often exists across state lines, falls on the family. The last thing these families should worry about is planning doctor visits.

The ACE Kids Act is an important step forward to provide relief for children with medically complex conditions and their families. The bill establishes health home programs that would coordinate care for children by providing access to pediatric emergency or subspecialized services, an individualized and comprehensive pediatric care plan that recognizes patient preference, and palliative care services. It is crucial that palliative care services are included as they will help patients heal physically, mentally, and emotionally. It is a voluntary program for states, families, and providers. The federal government would pay up to 90% of costs for the program in its first two years. Guidance will be issued by October 2020 to provide clarity for coordinating care with out-of-state providers.

We applaud Reps. Ruiz, Markwayne, Schrader, and Upton for introducing this bill and for all the members of Congress who voted in favor of it. Children with medically complex conditions and their families face a tough path, but the ACE Kids Act will provide some much-needed reprieve.

Read the Section-by-Section summary of the ACE Kids Act here.