Concerning Trends in Section 1115 Waivers

Medicaid exists to be a safety net for those who cannot afford or access other forms of health care coverage. Substantially altering the program in ways that reduce benefits for people in need is not only contrary to the goals of the Medicaid program but it could also worsen health outcomes and put health care out of reach for rare disease patients and their caregivers. NORD opposes state efforts to use Section 1115 waivers to restrict access to health care or to shift additional costs to patients.

In this edition of the State Report Card, NORD continues to track harmful policies implemented through Section 1115 waivers such as when states elect to eliminate retroactive eligibility, restrict or remove benefits, or make alterations in funding that could severely limit the number of individuals capable of accessing Medicaid coverage.

NORD no longer grades states on whether they have implemented a work requirement for Medicaid beneficiaries.¹ However, in 2022, the United States District Court for the Southern District of Georgia reinstated “Georgia Pathways,” an 1115 waiver that includes a work requirement. The federal government has declined to appeal this court ruling and, as a result, Georgia is the only state in the nation with a Medicaid work requirement.² While NORD is not reinstating this category within the 9th Edition of the State Report Card, we are tracking the issue closely and may decide to include it as part of the rubric in future State Report Cards. Since the state of Georgia already fails NORD’s “Protecting Patients in State Medicaid Programs” category, this ruling does not alter Georgia’s grade. Georgia’s proposal sets an alarming precedent and NORD is deeply concerned not only for the Georgians living with a rare disease who may be harmed by the Georgia Pathways waiver but for people in other states who may be impacted by similar proposals.

Acknowledgement for States with Proactive 1115 Waiver Policies

While NORD continues to grade this category with a pass/fail methodology, we acknowledge within the Report Card those states that have taken proactive steps to improve the scope and quality of their Medicaid programs. Additionally, beginning January 1, 2024, all states must provide 12 months of continuous coverage for children in Medicaid and the Children’s Health Insurance Program.³ Continuous coverage will ensure more reliable access to health care for children and reduce disparities. NORD is eager to support states in developing Section 1115 waivers that contain these concepts.

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1. Cameron, Chris. (2021, Dec. 23). Biden Administration Rejects Medicaid Work Requirements in Georgia. https://www.nytimes.com/2021/12/23/us/politics/medicaid-work-requirements-georgia-biden.html
2. Whitehead, S.& Miller, A. (2022, Nov. 18). Path cleared for Georgia to launch work requirements for Medicaid. Kaiser Health News. https://khn.org/news/article/georgia-medicaid-pathways-kemp/
3. HHS Takes Action to Provide 12 Months of Mandatory Continuous Coverage for Children in Medicaid and CHIP. (2023, Sept. 29). US Department of Health and Human Services. https://www.hhs.gov/about/news/2023/09/29/hhs-takes-action-provide-12-months-mandatory-continuous-coverage-children-medicaid-chip.html

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Grading Methodology

Given the complexities and differences amongst state Medicaid programs, the different status of each waiver, and the significant harm posed by many of the proposed policies, this report grades each state’s waiver activity on a “Pass” or “Fail” basis. At the time of this report, if a state sought and is working to implement, or is currently seeking a waiver that contains policies capable of harming the rare disease community, it received a failing grade. All other states received a passing grade.