Why + How to Advocate For Medicaid Today

According to Aaron Carruthers, Executive Director of the California State Council on Developmental Disabilities, when it comes to the proposed cuts to Medicaid—which helps fund California programs such as Regional Center and IHSS—“This is a four alarm fire. This is all hands on deck. There’s no messing around. The cuts are so big that it’s going to impact everyone in the program.” And while funding threats are sparking fear and confusion for many families, there is one bright spot: the #1 action you can take to fight for Medicaid doesn’t require a lot of research or preparation—it is simply to share your story. Below we share why it’s crucial to advocate for Medicaid and how to do it.

1. Why: It’s early in the process

In a recent webinar, Carruthers outlined Congress’ plan to cut federal spending, noting that the process involves eight steps starting with setting the goals and targets for spending cuts and ultimately leading to being signed or vetoed. Carruthers shared that this is a good thing: “We’ve finished step one and two and have not completed step three, and this matters because there’s a long way to go in this process, which means there are many opportunities for advocacy. Anything can happen at any step in this process; meaning, the proposals could change in any way, could stop, could not proceed. It’s an opportunity.”

2. Why: You are the expert

Carruthers urges people to tell their Medicaid story to their representatives. “Your lived experience makes you an expert,” said Carruthers. “You know more about these programs and how they work and how they help than anybody, so your voice is important.” Carruthers notes that stories can bring forward issues that may otherwise not be on a representative’s radar. “Members in Congress have a lot of views, a lot of responsibilities, a lot of priorities. You may be introducing your representative to disability issues.”

3. Why: Elected officials remember people and stories

Stories are what bring numbers to life. Carruthers shared that the reality is that in Washington, DC, representatives may be thinking in terms of one word (“Medicaid”) and one number (“880 billion”), which doesn’t convey the many different programs that Medicaid funds. Sharing your story personalizes the issue and helps representatives understand the impact of their decisions. “Elected officials remember the people they meet. They remember their constituents. They remember their stories,” said Carruthers.

4. How: Schedule a meeting to tell your story

Once you identify your Senators and Representatives, according to Carruthers the gold standard is to schedule a meeting in person or by Zoom. Simply call the office to ask for an appointment and indicate that you want to meet about Medicaid funding. You could also opt to go with other families as a group. Carruthers notes that the local offices of elected officials exist so representatives can hear from their constituents. “You can set up an appointment to meet with your legislator, your member of Congress, or possibly meet with staff. Sometimes their preference will be in person, sometimes it’ll be by Zoom,” notes Carruthers.

5. How: Prepare what you want to say

Carruthers recommends preparing what you want to say in order to stay focused on your Medicaid story and be mindful of the time. He also recommends showing up on time, being patient if you need to wait for your representative or their staff, and starting and ending on a positive note. Use the below bullets to develop your script:

• Thank the representative or staff member for their time
• Share your name and which city or county you live in
• Share your connection to the issue, e.g, “I’m [a person with a disability, a senior, a family member, a care provider, etc.]”
• Describe how Medicaid funded programs impact your life. Think of filling in the prompt, “Because of Medicaid funded programs, I…” Carruthers advises talking about the programs you receive, but not by name; instead, by benefit.
• If you talk to a staff member, ask how long it will take for your feedback to get to your representative
• Thank the representative or staff member for considering to protect Medicaid

6. How: If a face-to-face isn’t possible, call or write

If a face-to-face meeting isn’t possible, share your story via a call to your legislator’s office or a written letter.

We know you have many priorities on your plate, but we hope you will share your story. Meanwhile, check out the related resources below for more on special education and funding. And if you need further support from Undivided—for example, help applying for public benefits or preparing for an IEP meeting and access to members-only office hours with specialists in insurance, public benefits, and special education—sign up for a free trial for our Platform membership.