With the recent passage of HR 1 by Congress, rare disease communities – including Dravet syndrome – are seeking clarity on how the new legislation may impact their loved ones and families, particularly in areas such as access to care, insurance coverage, and treatment affordability.
One of the programs most impacted from these major policy and funding changes will be Medicaid, which could see cuts of more than $1 trillion over the next 10 years. While the intent of these cuts may not be to remove protection for the disabled or medically fragile, our families could unfortunately end up being impacted. Most of the program changes will be implemented over the next few years, so we may not know for quite some time exactly what will happen with the coverage and support that our loved ones receive.
As you may be aware, Medicaid is a federal program but it is managed at the state level. This is why there is already so much disparity between what Medicaid provides from state to state. In some states, patients get easy approval through waiver programs, parents can get nursing or respite services, and families receive all of the support needed to take care of their children or adults with Dravet syndrome. In other states, there are long waiting lists to receive the waivers, the approval and re-approval process is a huge burden, and the services provided are not adequate. Since the federal government will now be sending less money to the states, we have concerns about where and how each state may decide to make the cuts. Waiver programs are optional, so there’s no guarantee that some states won’t decide to reduce or eliminate those programs if they are not able to make up for the lost federal funding in other areas.
Here are some of the possible outcomes from these funding changes that may negatively impact patient families in the Dravet community:
States may decide to eliminate or reduce funding for home and community-based services (HCBS). For many families living with Dravet syndrome, HCBS waivers are essential in managing their child’s complex medical care and finding much-needed respite. Whether it is the ability for a child to qualify for Medicaid without parental income taken into consideration (often known as the Katie Beckett Waiver) or waivers that provide caregiving or day programs for disabled adults, these optional programs are a lifeline for many families. These waiver programs are not required by law, so eliminating or reducing the waivers available could be an easy way for states to make up for some of the lost federal funding.
States may request a new, separate HCBS waiver to cover those who do not meet the currently required institutional “level of care” determination. To support this expansion, the federal government has allocated $50 million in FY 2026 and $100 million in FY 2027. However, with average per-person Medicaid spending on HCBS at $36,275 (as of 2020), these funds would only cover services for about 27 individuals per state in the first year, before factoring in administrative costs or inflation. At the same time, the bill’s broader Medicaid cuts will result in major funding losses for states, likely worsening existing wait times for HCBS. As a result, many states may become ineligible to even participate in this new HCBS category.
Additional burdens to qualify or remain covered in Medicaid programs. It is estimated that at least 8-12 million current Medicaid recipients will lose Medicaid coverage by 2034. While the intent is not to take services away from the disabled, some states could introduce new requirements that make it more difficult for our loved ones to qualify. It should also be noted that there will be a shorter time period for retroactive coverage when first approved.
Many states already make it extremely difficult to qualify for Medicaid and associated waiver programs. Once procedural changes are put in place to try to reduce fraud and abuse, it means there will be more frequent eligibility checks to continue receiving coverage and services. For most in our community, the need for these services isn’t ever going to go away. We have already submitted a ridiculous amount of documentation (medical records, evaluations, IEPs, etc.) in order to qualify for Medicaid and waiver programs. Knowing that we may have to “prove” that our loved ones still qualify as frequently as once or even twice a year is an unnecessary burden for parents that are already stressed and overwhelmed just keeping up with day to day caregiving. While we hope that there will be exceptions made for the permanently disabled, it is likely that many families will be subject to these additional eligibility checks and scrutiny.
Rural hospitals could be at risk of closure. With less people covered by Medicaid, there is a chance that some rural hospitals could not survive. To combat this concern, the bill includes a Rural Hospital Fund which provides $50 billion in relief funding over five years to offset the severe consequences of the bill’s estimated $1 trillion in Medicaid cuts. However, this support falls drastically short of what’s needed to keep rural hospitals afloat.
As of May 2025, approximately 2,086 rural hospitals relied on Medicaid for $12.2 billion in annual net revenue. The median Medicaid revenue for these hospitals is $3.9 million per year. Given their already precarious financial positions, rural hospitals are especially vulnerable.
Over 300 rural hospitals are currently considered at “immediate risk” of closure. With Medicaid funding slashed by over $1 trillion, many more may soon follow. The proposed relief fund does little to bridge the gap: if divided equally, each rural hospital would receive just $4.5 million annually over five years. After that, the funding ends entirely.
We know that many families in our community depend on rural hospitals to be available when their loved one needs immediate emergency care. Traveling a long distance to get to another hospital when a child is facing a life-threatening seizure emergency is not acceptable.
Increased out-of-pocket costs. Starting in October 2028, some individuals could see new or increased co-payments for services. States will be able to impose cost-sharing on certain Medicaid services for those with incomes above the federal poverty level. This could mean copays or other charges, potentially up to $35 per service, for some enrollees. Additionally, providers will be permitted to deny services to those who cannot afford to pay these new costs.
What else can we expect?
The concerns listed above are what experts feel could have the most potential to impact our community. However, there are other aspects of these Medicaid cuts and changes that could cause funding issues for states, such as the rules around provider taxes and directed payments.
Some say that this bill will actually help our families because it will reduce the fraud and abuse that exists in the Medicaid program today, so that means more funds and programs will be available for those that truly need it. That could potentially be the case in some states, but for many in our community these cuts could result in a drastic reduction of benefits. It may be years before we fully see whether these changes impact our loved ones in a negative or positive way, but be assured that DSF will continue to monitor the impact of this legislation and any other policy changes.
What are the most important things that patient families can do now?
- Bookmark and follow DSF’s Legislative Advocacy page to keep up to date on issues that could impact you at advocatefordravet.org.
- Stay connected with reliable resources, such as The Arc, about your state’s Medicaid policy changes.
- Continue to participate robustly in community engagement opportunities before these changes take place, including educating your legislators at both the federal and state level (DSF can help if you aren’t sure where to start!).
- Continue to advocate with patient groups for protections around essential treatments and rare disease access
We are grateful to the EveryLife Foundation for their continued monitoring and detailed reporting on public policy that impacts the rare disease community.
