Comment on CMS-2026-2047-0002
ALS AssociationOpposeAdvocacy
Summary: The ALS Association expresses concern that the proposed Medicaid community engagement requirements create administrative complexities that could lead to avoidable coverage loss for medically vulnerable individuals and their caregivers. They argue that the rule risks undermining statutory protections and recommend specific safeguards, such as presumptive recognition of ALS as a medically frail condition and the recognition of caregiving as a qualifying form of engagement.
The ALS Association appreciates the opportunity to provide feedback on CMS-2454-IFC, which establishes nationwide Medicaid community engagement requirements, including a framework for eligibility, verification, and enforcement. We understand that CMS requires states to implement these provisions by January 1, 2027, with individuals expected to provide documentation of participation in qualifying activities unless eligible for an exclusion or exception.
Our concern is not with the intent of promoting community engagement, but with the substantial risk that medically vulnerable individuals and their caregivers may experience avoidable coverage loss or delays due to administrative complexity rather than true ineligibility. As currently structured, the rule risks undermining statutory protections by creating verification systems that may be difficult to navigate for individuals with serious or complex medical conditions, especially for Medicaid beneficiaries living with ALS and or their family caregivers.