Substitute House Bill No. 5367, Public Act No. 24-130, is an act concerning Medicaid coverage for rapid whole genome sequencing for critically ill infants and studies related to the Katie Beckett Waiver Program and Medicaid coverage of diapers. Effective July 1, 2024, the act mandates that the Commissioner of Social Services provide Medicaid coverage for rapid whole genome sequencing for critically ill infants being treated in neonatal or pediatric intensive care units, within available appropriations. The act defines "rapid whole genome sequencing" and "infant," and requires health care providers to certify that the genetic data from the tests are used solely for diagnosis and treatment, protected under HIPAA, and not used in research unless consent is given by a parent or guardian. The commissioner is also tasked with implementing necessary actions, including promulgating regulations and submitting waiver applications or Medicaid state plan amendments to ensure federal financial participation.

Additionally, the act establishes a working group to study and make recommendations on eliminating or reducing the Katie Beckett Waiver Program waiting list and prioritizing placements based on illness and life expectancy. The working group, to be convened by August 1, 2024, will include various stakeholders and is required to submit a report with its findings and recommendations by February 15, 2025. The act also instructs the Commissioner of Social Services to study the feasibility of expanding Medicaid coverage for diapers for children up to age three where medically necessary and report the findings by January 1, 2025. The report should include federal requirements, a summary of other states' coverage, clinical best practices, and fiscal impact to the state.