Medicaid Impact of U.S. House Reconciliation Package on People with Hydrocephalus

Understanding the Impact of Possible Federal Medicaid Changes on People with Hydrocephalus

As someone born with spina bifida and hydrocephalus, I have relied on programs like Medicare and Medicaid, especially in my adult life. I became dually eligible when I turned 18. Living with a disability and a chronic condition, I experience struggles in my daily life, including issues with executive function, memory, headaches and migraines, and mobility. Medicaid and Medicare coverage has allowed me to afford life-saving monthly prescriptions, given me the reassurance that I can afford the new wheelchair I am currently being evaluated for, and ensures I can receive in-home services if I ever need them, though I haven’t required them yet. So, I’ve been closely following the news and developments on Capitol Hill. The legislation being introduced could have very real impacts for Americans who depend on these programs, not just for health insurance, but also for vital home and community-based services (HCBS). This has me worried not only for myself, but for many friends within our community.

On May 13, the House Energy and Commerce Committee began marking up its portion of the fiscal year 2025 reconciliation bill, which includes substantial Medicaid changes. The committee aims to reduce the federal deficit by $880 billion over ten years, with Medicaid cuts being a significant component. If you’re feeling confused about what these programs do or how they’re funded, you’re not alone. Before diving into how these changes could affect people living with hydrocephalus, let’s take a moment to define some key programs.

What are Medicare and Medicaid?

According to the U.S. Department of Health and Human Services (HHS), Medicare is a federal health insurance for people 65 or older, and some people under 65 with certain disabilities or chronic conditions. Medicaid, on the other hand, is a joint federal and state program that helps cover medical costs for some people with limited income and resources.

What are HCBS?

Home and Community-Based Services (HCBS) are person-centered care provided in the home and community. These services include home health care, personal care assistance, senior centers, and home-delivered meals, among others. Most HCBS programs are covered through Medicaid waivers, which allow states to provide these services as an alternative to institutional care. The Kaiser Family Foundation states that over 700,000 Medicaid patients are on waiting lists to access these crucial services.

How could proposed Medicaid changes affect people with hydrocephalus?

For many individuals living with a chronic condition, like hydrocephalus, Medicaid serves as their primary source of health coverage or as a critical supplement to private insurance, which often does not cover all necessary services. Without it, access to care and support may become more limited, potentially reducing options for receiving care in the home or community-based care.

Hydrocephalus is a lifelong condition that often requires regular neurosurgical monitoring, emergency shunt revisions, and access to specialists such as neurologists and neurosurgeons. I have had 20 brain surgeries in my life, and never know when the next one will be. Attending yearly check-ups with my doctor is a vital part of my care to get neurological work-ups and imaging done to make sure my shunt is working properly. Medicaid helps ensure that individuals with hydrocephalus can access specialized care, including appointments, imaging (MRIs or CT scans), and emergency services.

Medicaid also covers therapies such as occupational therapy (OT) to improve fine motor skills, physical therapy (PT) to support balance and mobility, and cognitive therapy to address memory and attention—services that are essential for everyday life. Personally, I have relied on Medicaid coverage for physical therapy, which has been critical in helping me maintain my balance and mobility. I know these services are also equally vital to the many individuals with Normal Pressure Hydrocephalus that I speak to when they call HA for information and support.

I also use a wheelchair and ankle-foot orthotics (AFOs) to help manage my mobility. Many people living with hydrocephalus, as well as chronic conditions like spina bifida and cerebral palsy that affect mobility, rely on mobility aids like walkers, wheelchairs, or orthotic devices to assist with daily activities. Others may need equipment like feeding tubes, oxygen equipment, or sleep apnea devices. These items are considered Durable Medical Equipment (DME) and, unfortunately, they are often only partially covered, or not covered at all, by private insurance. Medicaid plays a crucial role in filling these gaps, ensuring that individuals can access the equipment they need to maintain their independence and well-being.

However, healthcare coverage is not the only way Medicaid supports people. Medicaid’s Home and Community-Based Services (HCBS) allow individuals fo all ages – including seniors with NPH or children and adults with disabilities, chronic conditions, or complex medical needs – to receive personal care, case management, and in-home supports that enable them to remain in their homes, rather than being placed in long-term care institutions. These services, also referred to as waiver-funded services or waiver programs, include respite care, personal assistance services, and skilled nursing care. While often associated with older adults, HCBS are equally vital for younger people living with conditions such as spina bifida, cerebral palsy, hydrocephalus, and other lifelong disabilities. For many families, these supports are essential to caring for a loved one at home and avoiding institutional care. Without strong federal funding for Medicaid, many of these critical services could be reduced or eliminated, leaving individuals and families with far fewer options.

The Proposed Changes and Their Impact

Let’s talk about what is happening in the U.S. government and the impact on Medicare and Medicaid. Recently, the Energy and Commerce Committee proposed legislation that would cut $880 billion over the next decade. This proposal includes major changes to Medicaid, such as:

• • Work Requirements for certain adults, which could result in loss of coverage due to bureaucratic hurdles.
  • Reducing the Retroactive Coverage Timeline from 3 Months to 1 Month, which currently helps people receive care even before their Medicaid applications are processed.
  • Cap on New Medicaid Provider Taxes, which allows states to finance coverage and respond to emerging health issues
  • New Mandatory Cost-Sharing Requirements to Medicaid Beneficiaries who qualify through Medicaid expansion (does not include children or patients who qualify through SSI), which would create a financial burden to low-income individuals who rely on affordable coverage through Medicaid

Breaking Down these Policies In-Depth

Federal Medicaid Work Requirements: The proposal would require some individuals in Medicaid to partake in at least 80 hours per month of work, community service, work program, or an education program to qualify for Medicaid coverage. These requirements would not apply to “pregnant women, individuals under the age of 19 or over the age of 64, foster youth and former foster youth under the age of 26, members of a Tribes, individuals who are considered medically frail (which includes, but is not limited to, individuals who are blind or disabled, who have a chronic substance use disorder, who have a serious and complex medical condition, or who have a condition, as defined by the State and approved by the Secretary, as meeting the definition of medically frail), individuals who are already in compliance with the work requirements under the Temporary Assistance for Needy Families (TANF) program or Supplemental Nutrition Assistance Program (SNAP), individuals who are a parent or caregiver of a dependent child or an individual with a disability, or are incarcerated or recently released from incarceration within the past 90 days.” While the new rules may seem like common sense, they would result in unintended consequences negatively impacting vulnerable patients.

New Medicaid work requirements would create additional administrative workload for beneficiaries, including those who are technically exempt. For individuals with hydrocephalus or other chronic conditions, especially those who experience intellectual or cognitive challenges, the added paperwork and documentation can be confusing and burdensome. Many already struggle to navigate complex systems like Medicaid or SSI, and new layers of administrative requirements only increase the risk of errors. Missing or incorrectly completed paperwork could result in the loss of coverage that provides access to essential, often life-saving care. According to the Congressional Budget Office, these changes could result in at least 8.6 million people losing their health and long-term care coverage.

Sierra’s Personal Take: In my personal experience, navigating the paperwork required to qualify for or maintain Medicaid is already a long and confusing process. I often rely on my parents to help complete the annual forms, which can take hours and are difficult to fit into an already busy schedule. For people like me who are balancing work and managing a chronic condition, finding time to handle these forms on top of daily responsibilities can be overwhelming. And if something is filled out incorrectly, it can jeopardize coverage. I’ve experienced that stress firsthand, and it’s incredibly frustrating. I worry that some individuals in the community may not have the proper support systems to assist them in filling out this paperwork on a frequent basis and could miss vital components needed for them to maintain coverage. Additional administrative barriers may push vulnerable individuals out of the very systems designed to protect their health and independence.

Reducing the Retroactive Coverage Timeline to 1 Month: Medicaid currently provides retroactive coverage for up to three months prior to a patient’s enrollment, helping to relieve the financial burden of medical care received before official approval. This grace period ensures that individuals can seek necessary treatment without fear of overwhelming medical debt while waiting for their application to be processed.

The proposed change would reduce that retroactive coverage window to just one month, significantly limiting the period during which patients can be reimbursed for healthcare services. The change does not take into account the reality that Medicaid approval can often take up to 5 months. Shortening the retroactive coverage period to one month creates a dangerous mismatch between how long approval processes actually take and how long patients are protected financially. For those living with conditions like hydrocephalus, this gap could mean the difference between accessing life-saving care or being forced to go without it.

Sierra’s Personal Take: In my experience, it typically takes 3 to 5 months to hear back about Medicaid approval. If a hydrocephalus patient without insurance who is waiting for coverage has an emergency brain surgery during the waiting period, which happens outside the 1-month retroactive window, they will have to cover the bill (thousands of dollars out of pocket) themselves. This is a huge burden to individuals and families, who may already be struggling financially and do not have the money to cover the cost. And worse, it could cause people to delay care that’s vital to their health and survival. Hydrocephalus is not a condition that waits for a convenient time. So often, we as individuals with the condition, and our families, face emergencies that are life and death. We don’t have the luxury of deciding to wait when our shunt decides to fail.

Capping the Ability for States to Implement New Medicaid Provider Taxes: In every state except Alaska, Medicaid programs are partly funded through special taxes on healthcare providers like hospitals, nursing homes, or insurance plans. The most common groups taxed are large hospitals, nursing facilities, and care centers for people with disabilities. States collect this money and then often return it to providers who care for Medicaid patients, helping to cover the cost of services.

This system gives states a way to raise extra money to support Medicaid—whether to maintain current services, expand benefits, or respond to new healthcare needs. The federal government also helps by matching some of the funds raised through these taxes.

The proposed policy would cap how much states can tax these providers and prevent them from creating new provider taxes in the future. This would limit states’ ability to bring in new funding for Medicaid and make it harder to close gaps in care, like for Home and Community Based Services (HCBS), for which over 700,000 patients nationwide are currently waiting to access. The new policy would create tough budget trade-offs for states and eliminate options that help states fund coverage for patients with high-cost conditions like hydrocephalus who depend on consistent, specialized care.

Sierra’s Personal Take: If there is a cap, this will limit the amount of funding states have for Medicaid coverage. Every person with a disability or condition will have varying needs, which may cost more than the cap allows for. I worry particularly about our NPH community, many of whom rely on home health services to maintain their care in their own home. I know many individuals in our community who use HCBS services for things like help with chores around the home and home healthcare, as well as rides to appointments and therapies. A cap on new provider taxes could take away a state’s opportunity to pull in new funds to expand access to essential services that hydrocephalus patients use.

New Cost-Sharing Requirements for “Expansion Adults” on Medicaid: The bill would require states to charge low-income adults small fees (called cost-sharing) for certain Medicaid services. This would affect people who get Medicaid through the expansion program – mainly single adults earning up to 138% of the federal poverty line (approximately up to $15,650 to $21,600 per year, depending on your state). These fees would not apply to people on traditional Medicaid, such as children, pregnant women, or individuals who qualify through Supplemental Security Income (SSI).

Each service could cost patients up to $35. Providers would also be allowed to refuse care if a patient cannot pay. Some services would be excluded from these fees, including pregnancy care, emergency services, hospital stays, nursing home care, hospice, family planning, COVID-19 testing, and vaccines.

Even though most people with hydrocephalus who are on Medicaid qualify through SSI and wouldn’t be affected, some do qualify through the low-income expansion group—and they would be. Hydrocephalus is not officially listed as a qualifying disability under Social Security’s guidelines, so many people with complex cases still don’t receive SSI benefits, even if their condition seriously affects their ability to work.

For those patients, these new costs could create serious financial barriers. Even small co-pays can be too much for people already struggling to make ends meet. And for people living with a condition like hydrocephalus, delaying or skipping care due to cost can be dangerous—and even life-threatening.

Sierra’s Personal Take: Right now, the majority of services I receive have no co-pay at all. When I go to the doctor, receive therapy, or pick up a prescription, I don’t have to worry about an out-of-pocket cost to me. This change could potentially result in a co-pay for me for services in the future. While some may be able to afford this change, many individuals and families I speak to as the Support & Education Assistant are already struggling financially. This would be a burden on those families.

Take Action Now

The proposed changes to Medicaid could have devastating effects on individuals with chronic conditions like hydrocephalus. Now is the time to make your voice heard. Contact your representatives, share your personal story, and let them know how Medicaid and HCBS programs have supported you or your loved ones.

To make your voice heard and protect critical services, visit this link or contact your local representatives directly to oppose the reconciliation package that includes these harmful Medicaid policies. Together, we can ensure that people living with hydrocephalus continue to receive the care and support they need.