By: Jackie Kancir, NCSA executive director
Sunday night, House Republicans dropped their latest plan for Medicaid reform, and it’s got a lot of people asking: Should we be worried? Should we panic? And what should we be doing? Here’s what you need to know—without the spin.
Heads up: Today at 2:00 PM ET, lawmakers are holding a markup hearing on this bill. If you want to hear the debate for yourself, tune in and listen as they hash things out on the floor.
Things could change in real time. Other factors outside of Medicaid face hurdles in getting a majority of Republicans to support the overall reconciliation package. This is forward movement of the reconciliation process, but we still have a long way to go for a variety of reasons before it is all said and done.
Key Points of the Latest Plan
Community Engagement: Starting in 2029, some people (adults ages 19-64) who get Medicaid will need to do activities like working, volunteering, or going to school for at least 80 hours each month to keep getting their health benefits. Note: This would not apply to children, seniors, or college students.
Exemptions: If someone has certain disabilities or is a caregiver, they don't have to do these activities. This means they can keep getting their health benefits without doing the community engagement activities.
Payment Limits: The plan sets limits on how much money can be paid for certain health services, making sure it doesn't go over what Medicare would pay.
Pharmacy Rules: There are new rules to make sure pharmacies are fair with drug prices and don't charge too much.
Are Medicaid Benefits in Jeopardy for Families Affected by Severe Autism?
The legislation specifically carves out protections for caregivers and people with serious disabilities like severe autism. If you’re a parent, guardian, or caretaker relative of a disabled person or dependent child, you’re considered a ‘specified excluded individual.’ Other clauses defining a specified excluded individual center around a person who is ‘medically frail or otherwise has special medical needs.’ Some relevant criteria for that term include those:
with a disabling mental disorder
with a physical, intellectual or developmental disability that significantly impairs their ability to perform 1 or more activities of daily living
with a serious and complex medical condition
There’s still cause for concern. Coverage could be lost due to administrative errors or even more strain on an already outdated system. The changes aren’t set to take effect until January 1, 2029, so there’s plenty of time to push for improvements—and legal challenges are undoubtedly forthcoming. It is not the time to panic. It is time to engage with legislators constructively to educate them on the authentic needs of our community.
Evidence versus Magical Thinking: What’s this really about?
Lawmakers claim this plan will boost self-sufficiency and lower unemployment, but the evidence disagrees. Recent analysis from KFF shows that 64% of Medicaid adults (ages 19–64) are already working (44% full-time). Another 12% can’t work because they’re caregivers. Only 8% aren’t working for reasons like retirement or inability to find work.
Even with carve-outs, the bill ramps up the risk of vulnerable people losing Medicaid—not because they’re ineligible, but due to red tape. Under the proposed rules, Medicaid eligibility would have to be re-verified every six months (instead of once a year). If you miss a letter or don’t send the right paperwork within 30 days, your coverage gets cut off automatically. Imagine already-overwhelmed caregivers scrambling to fax documents to an outdated system, only to find out their 30-day clock started days before they even got the most recent notice.
Arkansas recently announced a work requirement model that would offer additional support instead of immediate termination. Beneficiaries who fail redetermination get help from a success coach to get back on track. If Congress insists on these requirements, they need to add safeguards like this—in essence, our social safety net needs a safety net.
Who Has the Final Say—States or Feds?
The Supreme Court's decision in Biden v. Arkansas upheld the federal government's authority to approve state plans that include work requirements for Medicaid beneficiaries, provided they align with federal guidelines and the objectives of the Medicaid program.
However, the decision does not grant the federal government the power to force states to implement work requirements. Instead, it allows states the option to include such requirements in their Medicaid plans if they choose to do so, and if those plans are approved by the federal government.
The primary objective of Medicaid is to provide medical assistance to low-income individuals and families. Work requirements could potentially conflict with this objective if they result in individuals losing access to necessary healthcare services due to non-compliance (or perceived non-compliance for inability to jump through new laborious hoops).
Proponents argue that work requirements can promote personal responsibility and self-sufficiency. While that potential outcome may align with broader social objectives, it is not the objective of the Medicaid program, and therefore is unlikely to serve as a rational basis for upholding federally mandated community engagement.
The alignment or conflict with Biden v Arkansas largely depends on how these community engagement requirements are implemented and whether adequate support and exemptions are provided for those unable to meet them due to valid reasons, such as disability or caregiving responsibilities. Without amendments to include additional safeguards like the aforementioned Arkansas model, I do not anticipate this legislation passing muster.
“You’re Safe!” (on paper): The Crisis of Empty Waivers Gets Worse
Section 44133 of the bill would cap Medicaid service payments at the Medicare rate. Medicaid rates are most often less than Medicare, so it is a bit gray what the cap impact would be. Though the federal government provides a portion of Medicaid costs to states, reimbursement rates are set by the states and vary wildly state-to-state. Medicaid currently provides states flexibility to prioritize certain services and offer higher Medicaid rates, such as psychiatric services in Nebraska paying 167% of Medicare rates for the same services and Wyoming paying near double through Medicaid what Medicare pays for imaging scans. These are the exception, not the rule, though, and the bill does nothing to raise the reimbursement rates for Medicaid, which typically tend to be about 78% of Medicare reimbursement.
Under Section 44133, this would cap those services, forcing professionals in states with special rates to experience drastic cuts without addressing the disparities of Medicaid reimbursement rates that are set too low by states.
Here’s what could result:
Hospital Services: Payments for inpatient and outpatient hospital services could be capped at the Medicare rate, affecting how hospitals are reimbursed for treating Medicaid patients.
Physician Services: Payments to physicians for services provided to Medicaid beneficiaries may be limited to the Medicare rate, potentially impacting the willingness of physicians to accept Medicaid patients.
Nursing Facility Services: Payments for services provided in nursing facilities could be capped, which might affect the quality and availability of care for Medicaid beneficiaries in these settings. This likely also will apply to Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/ID).
Home Health Services: Payments for home health services, including nursing care and therapy, could be subject to the Medicare rate cap, influencing the availability of these services to Medicaid beneficiaries.
Outpatient Services: Payments for outpatient services, such as diagnostic tests and treatments, may be limited to the Medicare rate, affecting access to these services for Medicaid patients.
What’s the impact on families?
Access and quality: If providers can’t cover their costs, they may cut back on Medicaid patients, reduce time spent per visit, or drop out of the program altogether.
Provider shortages: Especially for people with severe autism, there’s already a shortage of specialized care. If subjected to lower rates, it could make this worse.
Out-of-pocket costs: If beneficiaries can’t get services through Medicaid, they may need to pay out-of-pocket expenses to seek care outside the Medicaid network or for services no longer fully covered. (Remember, 12% of Medicaid beneficiaries are caregivers who can’t work—they can’t afford this.)
Health disparities: Vulnerable populations, such as those with severe autism having serious and complex medical conditions, might be disproportionately affected if providers specializing in their care reduce participation due to lower payment rates. This could exacerbate existing health disparities.
So while families affected by severe autism are unlikely to lose Medicaid, the likelihood of that coverage resulting in the provision of actual services may be hindered.
What Should Real Reform Look Like?
On March 11, 2025, NCSA released a position statement calling for Medicaid reform that truly addresses the gaps and barriers to care for people with severe autism and their families. The solution? Strengthen the direct care workforce and make provider reimbursement rates sustainable. On its face, that may sound counterintuitive, but research suggests this approach would lead to significant cost reductions (Hand et al, 2018; Gilmore et al, 2021; Dudley & Emery, 2014; Wang, 2019; Davy et al, 2022; Schofield et al, 2019).
Last month, 150 families and advocates took these concerns to Congress. If you care about these issues, contact your legislators and join forces with your state’s autism or health policy councils. Now is a great time to engage with your NCSA State Chapter to work on efforts at the state level. Ask your state health department for their comprehensive list of “serious and complex medical conditions.”
Carry the message of #AuthenticAwareness, making sure state policymakers understand the serious and complex medical needs across the lifespan of individuals and families affected by severe forms of autism and related disorders.
Bottom line: The proposed changes won’t kick in right away, and there are protections on paper, but the risk of losing coverage due to bureaucracy is real—and the cap on provider payments carries potential to make an already strained system worse. There’s plenty of time to act, and your voice matters.