Toward a Medicaid where nothing is lost in translation

No matter  how you are connected to Medicaid – as a health care provider, managed care plan, advocate for people who use the program, or public health official – you have an important role as a translator. Translator of the complex and evolving policy and practice of the Medicaid program. Translator of how the program is viewed, both by the people it serves and the general public.

And not least important, translator of lived experience.

Translating the policy and practice of Medicaid. In this bridging year between the public health emergency and the next phase of development for Medicaid, we at NAMD see many opportunities to act as translators, for and on behalf of our state and territory programs. Recent examples of this include the following:

• We prepared detailed summaries of the recently finalized access and managed care rules, as well as the final eligibility rule. We have also created a timeline for advocates and others which includes key rules and their implementation timelines, which are significant and will require intense preparation, staging and collaboration among Medicaid policy, finance and operations leaders. here. We are also tracking a more detailed, annotated version for states and territories to help them stage this important work.
• My colleagues Hannah Maniates and Neda Jasemi have continued to produce excellent “explainer” pieces, such as this exposition on Medicaid home and community-based services and, in partnership with the National Association of State Budget Officers (NASBO), a comprehensive overview of Medicaid budget trends.
• In a Health Affairs Forefront article, I had the opportunity to illuminate staffing constraints at the Center for Medicaid and CHIP Services (CMCS) that have bottlenecked approvals for state and territory 1115 waivers, which serve as a primary driver for innovation in Medicaid.
• We are also collaborating with the Association of State and Territorial State Health Officials (ASTHO) to heighten attention and urgency by Congress related to three requests on behalf of the U.S. territory Medicaid programs. Specifically, we are urging Congress to 1) extend the permanent 83% FMAP to Puerto Rico; 2) eliminate the annual Section 1108(g) allotment cap; and 3) make targeted, project-specific investments to support maturation of territory operations and systems.

We also continue to outline the priorities of our membership to our federal partners and national partners. Currently, core priorities include:

• Smoothing Medicaid eligibility processes, improving continuity of coverage for eligible people, and ensuring meaningful access to the full array of services and supports that Medicaid members need. The enormous and complex task of “unwinding” the PHE-era continuous coverage requirement by resuming historically typical Medicaid eligibility renewal processes has challenged all states and territories to examine means of reducing administrative burden on Medicaid eligible people. Related, unwinding has been a call to action around adherence to and implementation of provisions of federal law that require both current-day action by states (e.g. achieving full compliance with Affordable Care Act eligibility requirements, including, but not limited to ex parte eligibility redetermination processes and the Consolidated Appropriations, CAA, provision requiring continuous eligibility for children that became effective January 1, 2024) as well as staging to implement major new provisions of federal rulemaking on eligibility as well as federal law (e.g. juvenile justice provisions of the CAA that become effective January 1, 2025).
• Sustaining investments that were made possible with federal pandemic funding and preparing to implement significant new obligations required under federal rulemaking. In the context of state budgets that are strained by declining tax revenues and sunset of pandemic-related federal financial assistance, and contending with competing priorities for use of general funds, state and territory Medicaid programs are: 1) working to sustain PHE-era benefit coverage expansions, flexible means of providing services, and targeted rate increases; and 2) preparing to adopt the extensive new standards, practices and systems changes that will be required under final federal rules.
• Addressing the state employee and health care workforce supply and retention crises with which Medicaid programs and their sister departments of state are grappling. Medicaid leaders continue to contend with a wave of retirements and attrition from civil service that has occurred in the wake of the PHE. In addition to the need to mitigate loss of institutional and operational history held by departing staff, Medicaid leaders have faced serious challenges in filling jobs for core eligibility, care management and other service-related functions that are difficult to manage in context of the low national unemployment rate and competing opportunities in other sectors. Related, nearly all segments of the health care workforce have been severely affected by attrition and challenges of recruitment. State and territory Medicaid leaders are most focused on the direct staffing (e.g. nurses, care managers, direct care workforce) that enables crucial aspects of preventative medical and behavioral health care, as well as continuity of care provided by safety net providers, notably including health centers.
• Advancing the health and health-related social needs of Medicaid members. While the unwinding process has necessarily been the predominant area of focus for Medicaid programs over the course of the last year, Medicaid leaders have continued to move forward a significant portfolio of care delivery and payment reform initiatives, under the auspices of federal 1115 research and demonstration waivers, focusing on priorities including health-related social needs (HRSN, e.g. housing supports), maternal health and pre-release interventions for people leaving carceral systems. To date, 54 of the 56 state and territory programs have at least one 1115 proposal or renewal pending with the Center for Medicaid and CHIP Services (CMCS), and many have multiple in the pipeline.

Translating member experience and public perceptions about Medicaid. During this unwinding year, it feels especially important to be informed by current data about member experience and public perception of the Medicaid program. We are grateful to KFF for continuing to shed light on both through recent opinion polls.

• In a poll assessing experience with unwinding, KFF found, in a section that asked respondents about the program overall, that:
  • Three-quarters (77%) of adults who were enrolled prior to the start of unwinding rate their experience with Medicaid as “excellent” (34%) or “good” (43%).
  • Majorities across racial and ethnic groups, including at least three-in-four Black enrollees (77%), Hispanic enrollees (79%), and White enrollees (79%) rate Medicaid positively.
  • Ratings are consistently positive across both Medicaid expansion states (79%) and in non-expansion states (71%).
  • At least six-in-ten pre-unwinding enrollees rate their Medicaid insurance as “excellent” or “good” when it comes to the quality of medical providers available to them (70%), the amount they have to pay out-of-pocket to see a doctor (68%), the amount they have to pay to fill a prescription (68%), and the availability of providers covered by Medicaid (62%).
• In another poll assessing both Medicaid members’ and the public’s perceptions about whether the current structure and funding mechanism for Medicaid should be maintained or changed, KFF found that 86% of current members and 71% of the public believe that it should be maintained as presently structured.

Translating lived experience. And last but certainly not least, we all benefit from opportunities to hear people translate for us by speaking to the reality of their own experiences with Medicaid. Two recent examples of this really stand out for me:

• In the most recent episode of our collaborative Medicaid Leadership Exchange podcast series with the Center for Health Care Strategies, visionary, frank parent advocate and OhioRISE Advisory Council member Mark W. Butler, OPA, MTS shares his experience of breaking new coordinative ground in partnering with Ohio Medicaid to develop a plan of care for his son Andrew, who has both mental illness and developmental disability. From the excruciating but necessary choice to surrender custody and driving “longer than the circumference of the Earth” to see Andrew on weekends, through reunification and Andrew living independently in an apartment, Mark talks about the need for models of shared leadership and influence, patience (“We’re not building a plane; we are planting a garden that may not grow as quickly as you want it to.”) and the need for a Medicaid-to-English dictionary. That last piece especially resonates with me.
• We also had the privilege of hosting a panel of people who serve as Peer and Recovery Support Specialists (PRSS) in Arizona, at our recent annual meeting for the NAMD membership. These speakers included Luis Gaxiola of Helping Ourselves Pursue Enrichment (HOPE) Arizona, Crystal Thomas of the Recovery Empowerment Network of Maricopa County, and Troy Grover of Hope Lives. What we heard was both affirming and bracing. All of them pointed to Medicaid as a mainstay of their own recoveries, but also frankly discussed numerous access barriers and unintended inhibitors to trust that can seriously impede forming the relationships needed to effectively transition back to the community from justice involvement and/or begin the process of connecting with treatment. Troy in particular also talked frankly and compellingly about continuing challenges in being treated as a full, working member of the recovery team by both clinicians and the court system. This is clearly an important work in progress that deserves attention from all of us.

Grateful thanks for all you do to translate and advance the policy and practice of the critically important Medicaid program.