At Families as Allies, we believe families are experts in their own lives, and that policymaking is strongest when the people most affected are at the table. In our April 23rd policy discussion, we focused on Medicaid in Mississippi: what’s happening now, what might be coming next, and how families can share input in practical, meaningful ways.
Medicaid funding decisions ripple into everyday life, especially for children and youth with mental health needs, disabilities, and complex healthcare needs. When Medicaid budgets tighten, the risk isn’t just “less money.” It can mean fewer services in the community, longer waitlists, and families being pushed toward higher-cost, higher-intensity options (like emergency rooms or inpatient care) when earlier supports could have helped.
During the session, we also named a theme many families recognize: “Nothing about us without us.” When decisions are made without families, transparency and outcomes suffer. The good news: there are public pathways for families to participate.
We discussed two groups connected to the Mississippi Division of Medicaid (DOM) that are designed to gather input and advise the agency:
- Beneficiary Advisory Council (BAC): A group of current or former Medicaid beneficiaries (and people with direct experience supporting beneficiaries) that advises the state on member experience and concerns related to Medicaid policy and administration. Anyone can apply or be nominated, as long as they meet the requirements.
- Medicaid Advisory Committee (MAC): Another public body made up of beneficiaries and other stakeholders where Medicaid shares information, seeks input and the public can listen in and offer comments.
These meetings matter because they’re opportunities to hear what Medicaid is planning and what issues it faces. A major discussion point in the April 24th MAC meeting was the current budget picture. Medicaid is funded through a state share plus a federal match. When the state share falls short, it can also mean losing the chance to draw down additional federal dollars. Right now, Medicaid is projecting a total budget deficit of around $700,000,000 in the next fiscal year.
We talked about how budget gaps can shift over time because costs, utilization, and reimbursement methods change. While the details can be complicated, one takeaway is simple: when budget decisions are being shaped, family voices are especially important.
Participants in our policy discussion offered thoughtful ideas and questions about how government uses Medicaid dollars, including:
- Eligibility and program rules: making sure eligibility rules are applied accurately and fairly, and that people understand what categories qualify.
- Hospital reimbursement: asking whether the way hospitals are paid (including projected payments and later reconciliation) could be improved for efficiency and transparency.
- Community-driven solutions: one example shared was a rural hospital engaging the community directly, asking what services would keep people from having to travel for care, and using that feedback to guide decisions. That’s “never about us without us” in action.
As we discussed these ideas, we also emphasized the need to be cautious about quick “cuts” that sound easy on paper but end up costing more elsewhere.
One part of our conversation focused on Medicaid-funded home and community-based services (often delivered through waivers). Sometimes these get labeled “optional,” which can make them targets during budget shortfalls.
But families know what happens when community supports disappear: people still have the same needs. The system just pays for them in different—and often more expensive—ways (emergency care, inpatient stays, school crises, or even involvement with law enforcement). Beyond cost, quality of life matters. People do better when they can live and receive services in their communities.
From a children’s mental health perspective, we highlighted several improvements that could protect our children and reduce unnecessary high-level placements:
- Make sure MAP teams function as a true single point of entry for youth (birth-21) with serious emotional disturbances who are at risk of leaving home.
- Use wraparound care coordination the way it was intended: Wraparound should start early, be family-driven, and independent, so plans are built around what a family needs, not around a provider’s menu of services.
- Reduce referral “pipelines” into residential care by requiring strong community planning and coordination through MAP teams and wraparound, and ensuring families are connected to local MAP teams immediately when a placement happens.
We also discussed a pattern families report: schools directing families to seek risk assessments or outside evaluations rather than meeting their obligations to identify and support students whose disabilities affect learning (through special education or 504 supports). When that happens, Medicaid may end up paying for services that could have been prevented or that should have been addressed through school-based supports. We discussed resolutions that Medicaid could pursue to recover those costs.
Here are practical ways families can take action:
- Attend public Medicaid meetings, especially the BAC and MAC (both offer a virtual option). Listening in helps you understand what’s being proposed before decisions are made.
- Sign up for public comment when meetings allow it. Even a short, personal statement about what services mean for your family can be influential.
- Submit comments outside meetings through official Medicaid channels (including the agency website or phone options), when available.
- Build relationships now with policymakers and agency leaders—before the next legislative session is in full swing.
Apply or nominate someone for the Beneficiary Advisory Council if you or someone you know has lived experience with Medicaid.
Note: Meeting dates and comment procedures can change. Always verify the latest schedule and instructions on the Division of Medicaid website.
Families don’t need to be policy experts to make a difference. If you’ve navigated Medicaid paperwork, waited for services, coordinated your family member’s care, or advocated at school, you already have the expertise needed in these meetings to make better decisions.
