NORD supports the ability of eligible rare disease patients to access comprehensive Medicaid services in their states without unnecessary and harmful barriers.
What are Section 1115 waivers?
Federal law typically establishes uniform rules that all state Medicaid programs must follow. Section 1115 waivers—authorized under Section 1115 of the Social Security Act—allow states to request permission from the federal government to operate their Medicaid programs differently, such as by testing new approaches to care delivery or cost management.
While some waivers are designed to improve care, others have been used to reduce benefits or create additional barriers to coverage. These policies can be especially harmful to rare disease patients who rely on consistent, comprehensive Medicaid coverage to access necessary care.
What we’re measuring
This measure evaluates whether states have used Section 1115 waivers to implement policies that limit access to Medicaid coverage, including but not limited to restricting or eliminating benefits, removing retroactive eligibility, or altering funding structures in ways that reduce access to care.
How we grade
This measure uses a pass/fail methodology. States that have proposed or implemented harmful Section 1115 waiver policies receive a “Fail” grade.
2025 critical update: federal Medicaid restructuring due to HR1
Congress has passed sweeping changes to the Medicaid program, including mandatory work reporting requirements, more frequent eligibility determinations, and reduced federal funding to states. These changes are scheduled to take effect in January 2027. To comply, states must submit implementation plans through State Plan Amendments (SPAs) or Section 1115 waivers.
This Report Card serves as a critical baseline. The upcoming wave of state waiver activity is expected to be unprecedented as states respond to new federal mandates. NORD will reevaluate its framework for identifying harmful policies ahead of the next State Report Card grading cycle.
Understanding concerning Section 1115 waiver trends
Medicaid continues to serve as a vital safety net for individuals who cannot afford or access other forms of health care coverage. Substantially altering the program in ways that reduce benefits for people in need runs counter to the intent of Medicaid and risks worsening health outcomes. For rare disease patients and their caregivers, such changes can place essential health care services out of reach.
Harmful policies we track
NORD monitors the use of Section 1115 waivers to identify policies that may undermine patient access to care, including:
At this time, NORD does not grade states on whether they have implemented work requirements for Medicaid beneficiaries.1 While this category is not included in the 11th edition of the State Report Card, NORD is closely tracking this issue and will continue to monitor related policy developments.
Special considerations
Georgia’s work requirement
At the time of data collection and analysis, Georgia was the only state with an active Medicaid work requirement following the 2022 reinstatement of the Georgia Pathways program by the U.S. District Court for the Southern District of Georgia.2 The Biden administration declined to appeal the court’s decision.
Because Georgia already fails NORD’s “Protecting Patients in State Medicaid Programs” category, this ruling did not alter the state’s grade. Nevertheless, Georgia’s proposal sets an alarming precedent. NORD is deeply concerned about the potential harm to Georgians living with rare disorders and the broader implications for patients in other states, particularly as implementation of HR1 progresses.
Acknowledging proactive states
Although this category is graded using a pass/fail methodology, NORD recognizes states that have taken proactive steps to strengthen their Medicaid programs through innovative Section 1115 waivers that expand access to care and improve program quality.
Data sources & acknowledgements
This analysis relies on data compiled and made publicly available by the Kaiser Family Foundation (KFF), a nonprofit organization providing trusted information on national health issues and state Medicaid policy. NORD gratefully acknowledges KFF’s critical work in tracking state Section 1115 waiver activity and making this data accessible to researchers, advocates, and policymakers.
1. Kaiser Family Foundation. Section 1115 Medicaid waiver tracker and analysis.
2. Whitehead S, Miller A. Path cleared for Georgia to launch work requirements for Medicaid. Kaiser Health News. November 18, 2022.
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