Medicaid Coverage is a Lifeline for Many Hydrocephalus Patients

Affordable healthcare insurance is a crucial asset for the hydrocephalus community. Coverage impacts patients in every state and every political ideology. Without comprehensive coverage, patients incur high out-of-pocket medical bills that can lead to substantial medical debt. As most patients in the community understand; not having affordable access to care can be life-threatening.

Hydrocephalus-related healthcare charges are extremely high resulting in over $2 billion in surgical treatment costs each year. Recurrent brain surgeries, different medications, and routine medical services are common for the hydrocephalus community. To maintain access to medical needs, a large portion of hydrocephalus patients rely on coverage through state Medicaid programs.

What is Medicaid?

Medicaid, a federally and state-funded healthcare program, provides low-cost healthcare coverage to low-income patients, children, pregnant women, and patients with disabilities. Over 80 million individuals were enrolled in Medicaid in 2024.

Individuals can qualify through a few ways.

• It is federally required for seniors and people with disabilities on supplemental security income (SSI) to be eligible for Medicaid healthcare coverage.
• Full-time caregivers with dependents on Medicaid can qualify for coverage.
• Children in families or pregnant mothers with an income lower than 138% of the federal poverty line must be eligible.
• Children receive coverage through their state’s Children’s Health Insurance Program (CHIP), which is part of Medicaid.
• Individuals who live in states with Medicaid expansion (all but 10 states) may qualify if their income falls under 138% of the federal poverty line. (Medicaid expansion will be explained later on). Additionally, states can choose to cover additional populations based on medical needs.

Patients on Medicaid make up the largest single source of healthcare insurance in the country. $1 in $6 spent on healthcare in the U.S. are from patients in the program and one in four individuals nationally rely on the program.

The most vulnerable populations rely more heavily on Medicaid. Approximately half of all children are covered by CHIP. Rural Americans, who have higher rates of chronic conditions, disproportionately rely on Medicaid and CHIP beneficiaries compared to individuals living in urban areas.

The widespread usage of Medicaid has contributed to its popularity. The Kaiser Family Foundation (KFF), a nonpartisan health research organization, found that 71% of voters viewed the program favorably. This favorability expands past party lines. 63% of Republican respondents in the poll approved of Medicaid.

Medicaid and the Hydrocephalus Community

The program is integral within the hydrocephalus community. A recent study found that approximately a third of hydrocephalus patients who require shunt-related hospital admissions rely on the program for coverage. The majority of these patients likely qualify through SSI. SSI requirements limit the amount of financial assets an individual can own ($2000 for individuals and $3000 for couples). Therefore, many SSI recipients lack the financial resources to cover out-of-pocket healthcare expenses. Low or no cost-sharing coverage for medical visits, procedures, and medications within Medicaid enables access to needed care without financial strain.

Without Medicaid, many hydrocephalus patients would not be where they are today. For Nancy Pardee, Medicaid has been integral to her health. As a normal pressure hydrocephalus patient, she struggled greatly with cognitive and gait decline for years. Medicaid allowed her to affordably access multiple specialists which eventually led to her diagnosis. Without Medicaid coverage, she would not have been able to afford the MRI and shunt brain surgery that turned her life around. Full Medicaid coverage of services like at-home physical therapy contributed to her strong recovery. She now has her life back.

In 2024, 7.2 million low-income seniors were dually enrolled in Medicare and Medicaid. Medicaid coverage can limit or fully cover out-of-pocket healthcare costs like premiums, copays, deductibles, and coinsurance for dually enrolled beneficiaries. This additional coverage has helped people like Nancy access needed care not fully covered by traditional Medicare.

States can administer additional Medicaid coverage for patient groups through Medicaid “waivers”. These waivers are granted by the federal government. They allow states to finance services and coverage for patients not traditionally covered by federal requirements. The waiver options allow Medicaid programs to address state-specific health problems.

Federally financed waivers like the K01 Washington Medicaid program have ensured lifesaving coverage for children like Juniper Taam. The KO1 program provides Washington health coverage to children with prolonged stays in hospitals or healthcare facilities. Because of Juniper’s Medicaid qualification, her family received affordable coverage for critical care such as her NICU stay, multiple hydrocephalus-related surgeries, and specialist treatments. For many hydrocephalus families like the Taams, Medicaid is not only healthcare insurance, it ensured the survival of their child.

Some of the most crucial benefits provided by Medicaid are home and community based services (HCBS), another Medicaid waiver. The services offer essential benefits to beneficiaries with intellectual and developmental disabilities. HCBS includes assistance with daily activities like personal care, transportation, meal help, home repairs, and other forms of assistance like employment support. It also can bring healthcare services to the home through skilled nursing care and therapy care. Many hydrocephalus patients who experience neurocognitive and/or physical disabilities rely on the services to maintain independence.

Despite the effectiveness of HCBS in allowing patients to live independently, access to the program is a challenge. Medicaid programs lack the resources to meet demand. 711,000 Medicaid beneficiaries are in line to access HCBS. State Medicaid programs struggle to retain a robust workforce of direct care workers to administer HCBS. These workers include personal care aides (PCAs), home health aides (HHAs), and certified nursing assistants (CNAs). Relatively low wages and job satisfaction have led to an annual turnover rate of 40% to 60% of direct care workers. Decreases in Medicaid resources and funding would exaggerate long wait times and workforce turnover.

Patients with disabilities and older age adults disproportionately utilize HCBS. They also make up the majority of overall Medicaid spending. Despite representing only 23% of total Medicaid enrollees, individuals who qualify through disability or age qualification make up over half of the total spending within Medicaid. Spending cuts would therefore hit these populations representing major parts of the hydrocephalus community.

How are State Medicaid Programs Financed?

The largest single source of federal funding for states comes from Medicaid financing. Medicaid, like Medicare, is an entitlement program, meaning there is no cap on federal funding. Each state receives federal assistance for traditional Medicaid based on a Federal Medical Assistance Percentage (FMAP), which determines the share of total Medicaid expenses the federal government will pay for. The government must assist with the cost of each beneficiary in the program.

The federal matching rate has a floor of 50%, meaning each state will receive that at a minimum. However, states receive a different funding percentage based on the state’s average income per person compared to the national average. For example, 50% of the costs associated with traditional Medicaid in California are expensed by the federal government while 74.22% of West Virginia’s expenses are covered by the federal government due to a much lower average income.

The Affordable Care Act allowed states to expand their Medicaid programs to more patients. For the expenses associated with new beneficiaries who have qualified through a state’s Medicaid expansion, the federal government is required to cover 90% of costs.

Why Is this Issue Important Now?

Medicaid is on the minds of federal lawmakers. As Republican members of the United States Congress work to craft budget packages to support the new Administration’s priorities, they are assessing various “pay-fors”. Pay-fors are essentially legislative proposals that decrease federal spending. Proposed cuts to domestic programs like Medicaid and the Supplemental Nutrition Assistance Program (SNAP) would fund Administration priorities like deficit reductions, tax cuts, immigration, and defense spending.

The House Republican Budget plan would require the Energy and Commerce Committee (which has large oversight of domestic healthcare spending) to enact $880 billion in spending cuts over ten years. Given the high costs of the program, federal Medicaid spending cuts are likely to be on the table.

Proposals to limit federal funding like FMAP reform, per capita caps, or block grant funding would all significantly reduce federal funding for Medicaid programs. Decreased financial assistance would force states to limit coverage and benefits for beneficiaries. This would jeopardize current Medicaid programs like home and community based services (HCBS), which hydrocephalus patients, particularly those with disabilities and seniors living with NPH, directly rely on.

Changes to federal funding could severely impact coverage in states with Medicaid expansion. Since 90% of expansion dollars are covered by the federal government, significant cuts would force states to make up the difference. States may roll back Medicaid expansion to address funding shortfalls. Additionally, 9 states that have previously expanded Medicaid through the Affordable Care Act contain “trigger” laws that would repeal Medicaid expansion if the federal Medicaid funding matching rate falls below current levels. These states are Arizona, Arkansas, Illinois, Indiana, Montana, North Carolina, New Hampshire, Utah, and Virginia. As a result, millions of patients would lose affordable healthcare coverage previously provided by Medicaid.

This could affect Medicaid eligibility for hydrocephalus patients. While many qualify through Supplemental Security Income (SSI), which is required under traditional Medicaid (not Medicaid expansion requirements), others rely on low-income eligibility. Hydrocephalus is not included in the SSA Listing of Impairments, meaning not all complex hydrocephalus patients qualify for SSI despite the condition’s impact on their ability to work. Medicaid expansion repeal or reductions in federal funding would force Medicaid programs to tighten income eligibility requirements, potentially excluding patients who need Medicaid to access life-saving care.

Cuts to federal Medicaid funding could also impact provider access for current beneficiaries in the program. Medicaid reimbursement rates are low compared to Medicare and private insurance, which contributes to the smaller percentage of providers and health systems that accept Medicaid patients. Decreased federal funding to state Medicaid programs could force states to limit current reimbursement rates increasing financial strain for providers enrolled in the program. Access to qualified physicians in Medicaid may fall if providers back out as a result.

This is particularly concerning for adult hydrocephalus patients on Medicaid who face challenges finding adult neurosurgeons willing to take them. Among the disincentives for adult neurosurgeons are the low reimbursement rates provided for shunt neurosurgeries and procedures. Proposed cuts to Medicaid could exaggerate this widespread problem even more.

How You Can Help:

The outcome of these current policy discussions will determine whether hydrocephalus patients on Medicaid will continue receiving the same comprehensive healthcare coverage they have consistently relied on. The hydrocephalus community needs to ensure that Congress understands the importance of Medicaid to ensuring access to critical care. To urge your members of Congress to oppose harmful cuts to federal Medicaid funding, click the action alert below!

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