On June 30, 2023, TCF health care policy fellow Thomas Waldrop submitted the following public comment to the U.S. Department of Health and Human Services (HHS) in response to their notice of proposed rulemaking (NPRM), “Medicaid Program; Ensuring Access to Medicaid Services” (file code CMS–2442–P). In his comment, Waldrop highlights how including patient voices in discussions of how to administer Medicaid programs will improve their impact on patient outcomes and promote accountability to the patients Medicaid serves. The comment also urges CMS to require states to clarify how they will support the participation of beneficiaries with limited English proficiency and disabled beneficiaries in these discussions, and argues against delaying implementation of the proposed rule.
I am pleased to provide comments to the Centers for Medicare and Medicaid Services’ (CMS’) request for public input on the notice of proposed rulemaking (NPRM), “Medicaid Program; Ensuring Access to Medicaid Services,” file code CMS–2442–P, on behalf of The Century Foundation (TCF).
My name is Thomas Waldrop and I serve as a health care policy fellow at The Century Foundation, a progressive independent think tank. The Century Foundation works to create a health care system that advances health equity by supporting the right to access needed care free of structural barriers. The team focuses on issues related to health coverage, reproductive rights and justice, maternal health equity, racial and gender disparities in health outcomes, and the intersections between health care and economic justice.
In general, I applaud the proposed rule’s efforts to advance equity, increase payment rate transparency, and strengthen a patient-centered attitude in the Medicaid program. This comment letter focuses on the proposed changes to Medicaid Advisory Committees. Specifically, CMS should clarify requirements for states to ensure that beneficiaries, especially disabled beneficiaries and those with limited English proficiency, are best able to participate in feedback opportunities, and should maintain the proposed timeline for implementation of the reforms to Medicaid Advisory Committees.
Expanding the Scope of MACs Will Improve Medicaid’s Efficacy at Promoting Health
The proposed state requirements regarding Medicaid Advisory Committees (MACs) will help to center patient voices, ensuring that Medicaid beneficiaries are better able to provide input on how Medicaid programs are meeting beneficiaries’ needs and where states can continue to improve. Ultimately, the Medicaid program should be accountable to the patients it serves. Authentic beneficiary engagement is a necessary step in making this a reality, and will advance both the goals of the Medicaid program and CMS’ commitment to health equity in numerous ways.
Ultimately, the Medicaid program should be accountable to the patients it serves. Authentic beneficiary engagement is a necessary step in making this a reality.
In particular, the expansion of MACs to consider not only health and medical services, but also policy development for and administration of Medicaid programs, will likely improve outcomes for patients and states. This new, broadened scope will allow patients greater opportunity to highlight when facilities or coverage decisions do not meet their needs, and it will also allow them to highlight the burden that various administrative decisions may have on their ability to access care.
For example, Medicaid beneficiaries would have been able to provide a unique perspective to states as they planned their unwinding of the continuous coverage requirement, potentially avoiding the significant procedural disenrollments many states are seeing. Beneficiary experience could also provide valuable opposition to proposed work reporting requirements, putting names and faces to the statistical reality that most Medicaid beneficiaries already work. These committees can also be used in the future to highlight opportunities for states to continue to address social drivers of health (SDOH) in partnership with Medicaid programs.
Careful Administration of Beneficiary Advisory Groups Will Promote Accountability to Patients
In addition to the proposed changes to the administration of MAC meetings and scope, TCF is especially supportive of the requirement to create a Beneficiary Advisory Group (BAG) within each MAC, composed of current and former Medicaid beneficiaries. Requiring states to set aside, at minimum, 25 percent of MAC membership in this way will ensure that beneficiaries can provide input on the program, especially when combined with the separate, advance meetings required to allow beneficiaries to discuss agenda items and policy proposals in advance of the full MAC meetings. We do, however, urge CMS to consider increasing the relative proportion of the MAC that BAG members should constitute.
While the percentage proposed will help ensure that patients have opportunities to provide feedback, increasing this amount to 51 percent, as is required for federally qualified health centers’ governing boards, would go further toward achieving this goal and would further reduce the possibility of patients being intimidated during MAC meetings. CMS’ desire to balance inclusion of patient perspectives with those of other stakeholders, such as family members, caregivers, or health care providers, is an admirable one. Requiring BAGs to include both patients and family members or caregivers and increasing the relative proportion of the MAC that this group represents, however, can help ensure that this balance is maintained while also ensuring that beneficiaries are prioritized in both groups.
It is also critical for CMS to provide robust standards for states to ensure that BAG members are able to participate in MAC meetings on an equal basis with other members, such as providers or state employees. Medicaid enrollees, by definition, will have a relatively low income, increasing the likelihood that these meetings and the materials and preparation needed to participate in them, such as computer and reliable internet access for virtual meetings or accommodations of scheduling for all meetings, may create an undue burden for BAG members. A 2020 report by the Department of Health and Human Services highlighted the stark inequities in broadband access along income lines, and recent research by the Pew Research Center found similar disparities in technology ownership. CMS should explicitly clarify that reimbursement for these technological needs, as well as for beneficiaries’ time and needs such as child care, are permitted under the administrative match allowed for MAC operation.
Medicaid enrollees, by definition, will have a relatively low income, increasing the likelihood that these meetings and the materials and preparation needed to participate in them, such as computer and reliable internet access for virtual meetings or accommodations of scheduling for all meetings, may create an undue burden.
Similarly, CMS should require states to report how they intend to create meaningful access for disabled beneficiaries and beneficiaries with limited English proficiency. References to existing regulations (e.g. the ADA and section 1557 of the Affordable Care Act) are good and will be helpful in ensuring reasonable accommodations: MAC meetings are different in function and purpose than other applications of those regulations, especially in the context of Medicaid programs. Offering guidance to states on how to comply with these regulations, such as requiring plain language versions of proposed changes or meeting agendas, is also something CMS should consider as it finalizes this rule. Similarly, states should be required to solicit feedback from BAG members on if these supports proposed to ensure meaningful access are sufficient.
Creating a strong BAG is also crucial to ensuring the other proposed changes in this regulation are as effective as possible. For example, the requirement that MACs include at least one representative of a non-Medicaid state agency as an ex-officio member should be informed by beneficiaries. Including patient perspective in this decision will ensure that agencies responsible for addressing the SDOHs that beneficiaries view as most urgent are included in the meeting, rather than solely based on state decision-making.
Timely Implementation of This Rule Is Essential
Finally, CMS should maintain its existing timeline for implementation of these proposed changes to MAC operations. While states will certainly need time to change agency processes to comply with these new requirements and recruit members for their BAG if they do not currently operate a similar group, providing states with more than one year will unnecessarily delay the opportunity to include patient perspectives throughout the processes states use to develop and administer their Medicaid programs. As states continue to reevaluate beneficiaries’ eligibility for the first time in years, an upcoming requirement to center patient voices also creates an additional reason for states to conduct these redeterminations carefully and intentionally. The United States health system often operates reactively to the detriment of those involved, and promoting patient perspectives would allow states to begin to focus on meeting patient needs to be healthy.
Improving beneficiary input into how Medicaid is operated is an important step toward ensuring that states are accountable to meeting the health needs of this population. CMS should implement this rule quickly to avoid any unnecessary delays in patient input to states’ Medicaid programs.