The Hydrocephalus Scoop on Capitol Hill — October 2025

RECENT FEDERAL UPDATES

We hope you’re hanging in there. It’s been a tough few weeks in D.C., and we wanted to give you a quick update on what’s happening in Congress and how it might affect our hydrocephalus community—especially when it comes to healthcare access and telehealth.

The federal government has been shut down for nearly a month now, and unfortunately, there’s still no clear end in sight. Lawmakers haven’t been able to agree on a funding plan, which means a lot of federal services are either paused or running with skeleton crews. Congress is also debating on how to handle the increases in premiums for health insurance plans on the Affordable Care Act insurance marketplaces. These plans are facing extreme increases in premiums due to an expiration in funding to help keep premiums low. We are advocating for Congress to make healthcare affordable, ensure there is access and also open up as soon as possible.

Here’s what the government shutdown currently means for our community:

• Programs that support medical research and disability services are facing delays.
• Federal workers, including those who help manage health programs, are not working or working without pay.
• Advocacy efforts tied to federal funding—like pushing for more hydrocephalus research—are temporarily stalled.

We know this can be frustrating, especially for families who rely on government-supported healthcare or services. We’re keeping a close eye on developments and will jump into action as soon as things start moving again.

Telehealth: Some Big Changes

On top of the shutdown, there’s been a shake-up in telehealth rules. As of October 1, some of the special flexibilities that were put in place during the pandemic have expired. Here’s what’s changed:

• Medicare now requires an in-person visit within six months of starting telehealth care, and then once a year after that.
• Behavioral health services still have some wiggle room, especially in rural areas, but new rules are coming in January.
• Some telehealth claims are being delayed because of the shutdown, which could affect billing and access.

If you or your loved ones rely on virtual visits to manage hydrocephalus or related conditions, this could make things a bit more complicated. We’re working with partners to advocate for more permanent, flexible telehealth options—because we know how important they are for people who can’t always make it to in-person appointments.

How You Can Help

Even while Congress is stuck, your voice still matters. Here’s what you can do:

• Reach out to your representatives and tell them why uninterrupted healthcare access matters to you. Find your members of Congress here.
• Share your story—especially if telehealth has made a difference in your life.
• Stay connected with us for updates and action alerts.

We’ll keep pushing for policies that support our community, and we’re so grateful to have you with us. Thanks for being part of the fight.

PARTNERSHIPS IN THE HEALTHCARE SPACE

Telehealth for Medicare Beneficiaries: HA joined the Alliance for Connected Care members in urging Congressional leaders to immediately act on a long-term telehealth fix in its next legislative package in order to ensure stability and provide clarity for patients, providers and the health care system as a whole. Failure to extend telehealth flexibilities as it has done in the past has led to an abrupt end to telehealth services for millions of Medicare beneficiaries.

It’s Enrollment Season! Resources for the Marketplace, Medicare, and Medicaid. The annual election period for Medicare runs October 15 – December 7. The Marketplace open enrollment starts on November 1st. Now is the time to review your health insurance options if you receive healthcare through Medicare, Medicaid, or the Marketplace.

NOTE: During the government shutdown, if you have a 2025 health insurance plan, you can continue to use it and your providers. (healthcare.gov)

Here are some helpful resources:

Healthcare.gov is the official Health Insurance Marketplace website. There are a number of resources to help you choose the right plan and find local help, if you need it.

The Centers for Medicare & Medicaid Services (CMS) is the official federal site for Medicaid and Medicare where you can find helpful tools like the “Compare Plans” / “Find a Plan” to see local options. Visit Medicare.gov.

National Disability Navigator Resource Collaborative (NDNRC) maintains a catalog of updated fact sheets for navigators and consumers.

National Council on Aging (NCOA) provides guides and tools specifically geared toward older adults and individuals with disabilities that are dual eligible.

State Health Insurance Assistance Program (SHIP) connects you with local experts in your state that offer free, unbiased counseling for Medicare and related insurance matters.

OPPORTUNITIES TO ENGAGE