The civic record
Read. Follow. Verify.Missouri bill requires individualized care plans and protocol logs for children with rare or medically complex conditions starting in 2027
Last action · May 15, 2026: Referred: Emerging Issues(H)Sponsors: Tricia Byrnes and 1 other
Track this bill to get notified when it advances a stage. One tap to stop, anytime.
What This Bill Would Do
House Bill 2513 requires health care providers to collaborate on and maintain physician-approved s for children under eighteen with rare or medically complex conditions, beginning March 1, 2027. The measure mandates deviation logging, twenty-four-hour reporting of s, specialized pediatric training, and anti-retaliation protections for s.
Hospitals and emergency service providers face mandatory audits and corrective action plans by the state health department if they fail to follow or maintain mandated care protocols for pediatric patients with complex medical needs.
- House Bill 2513 was introduced during the 2026 Regular Session of the Missouri General Assembly by Representative Tricia Byrnes. context
Who It Would Affect
Groups the bill's text would affect if enacted, as described in the record. Being affected is not a position for or against it.
Children with rare or medically complex conditions
Their medical care will be governed by mandatory individualized care plans and protocols maintained across electronic and paper health records.
Caregivers
Caregivers gain the right to have their concerns recognized during care plan updates, receive twenty-four-hour deviation notices, and are legally protected from retaliation.
Hospitals and emergency services providers
They must collaborate on care plans, maintain deviation logs, report significant deviations within twenty-four hours, and undergo state audits and training requirements.
Pediatric health care professionals
They are required to complete rare disease training and adhere to documented individualized care plans.
Key Facts
- Establishes Maddie's Law: The Rare Pediatric Disease Care and Protocol Protection Act, effective March 1, 2027.
- Applies to children under eighteen years of age with a condition affecting fewer than two hundred thousand individuals in the United States or carrying a high risk of acute deterioration.
- Requires health care providers to collaborate in developing, documenting, and maintaining an individualized care plan that includes emergency care instructions and a primary specialist.
- Mandates that individualized care plan updates require the explicit written approval of the child's primary specialist and recognition of the legal guardian's concerns.
Show all 9 facts
- Requires hospitals and emergency services providers to maintain logs of care plan adherence, protocol deviations, and patient handoffs.
- Mandates that significant protocol deviations resulting in harm or potential harm be reported within twenty-four hours to the child's primary specialist and the hospital's quality and safety officer.
- Empowers the department of health and senior services to audit health care providers upon receiving noncompliance reports and order corrective action plans.
- Requires health care providers to offer and require rare disease training for all pediatric health care professionals.
- Prohibits health care providers from retaliating against caregivers for advocating care plan adherence or reporting protocol deviations.
Frequently Asked Questions
Who must approve changes to a child's individualized care plan?
What happens if a significant protocol deviation occurs?
What else do you want to know?
News Coverage
Follow the record
Votes, people, money & the original sourceWhere This Stands
Currently in committee. The next step in the legislative lifecycle is Floor Vote.
Procedural history
4 actions- May 15, 2026HouseCommitteeReferred: Emerging Issues(H)
- Jan 8, 2026HouseFloorRead Second Time (H)
- Jan 7, 2026HouseIntroducedRead First Time (H)
- Dec 18, 2025HouseIntroducedPrefiled (H)
Version history
Only one version on file - nothing to compare yet. As later stages (committee substitute, engrossed, enrolled) are captured, the redline appears here.
View official text →Lobbying Activity
No state lobbying filings in our records match this bill. Federal lobbying reports (LDA) cover Congress, so they are not listed on state bills.
Full breakdown
Who this bill affects and the strongest case for and against it, written only from the bill’s own text.
Sponsors
Discoveries
Patterns POLISCOPE noticed across the record. These are observations to investigate, not conclusions.
Codification of Pediatric Care Protocols
The bill shifts hospital and emergency provider obligations from internal guidelines to mandatory statutory requirements subject to state audit and corrective action plans.
Connected Entities
Sources
house.mo.gov
Analysis Score
0–100- Significance75How much this matters to a regular citizen
- Controversy15Intensity of disagreement among stakeholders
- Entertainment5Compellingness for a non-policy-wonk reader
- Buzz30Current news / social attention level
Publisher tools