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Tell Your Legislators: Protect Medicaid!

Table of Contents

Words to Know 

Budget Reconciliation– A way for Congress to pass some kinds of bills about funding faster.

Budget Resolution– A plan for how Congress will spend federal money over the next few years. The budget resolution helps Congress set goals for spending and saving federal money.

Congress – The part of the U.S. government that makes laws. There are 2 parts to Congress. They are called the Senate and the House of Representatives.

Constituents– Someone who lives in the place that their legislator represents. Constituents are the ones who vote for their legislator.

District office– A legislator’s office in the part of the state the legislator represents. 

Eligibility checks– When the government makes you fill out paperwork to prove you should still get Medicaid.

Federal government– The government for the whole United States of America 

Home and community based services (HCBS)— A type of LTSS where people get the services they need at home instead of from institutions. Home and community based services get called HCBS for short.

Institutions– Places where a lot of people with disabilities live. People in institutions usually do not have a lot of rights or control over their lives.

Legislators– The people in government who can vote on laws. The U.S. government has 2 kinds of legislators. They are called Representatives and Senators.

Long Term Services and Supports (LTSS)— Services that help people with disabilities live our everyday lives. Long Term Services and Supports get called LTSS for short.

Medicaid– A program run by the government to help people pay for health care and services. Medicaid helps people who do not have a lot of money. Medicaid also helps people with disabilities.

Paying out-of-pocket– Spending your own money on something. 

Representative– A member of the House of Representatives in Congress. They got elected to make decisions about laws. The House of Representatives gets called “the House” for short.

Senator– A member of the Senate in Congress. They got elected to make decisions about laws.

Town hall– A meeting that Representatives and Senators have with the people they represent in their district or state.

Waiver– Medicaid programs that let someone get HCBS instead of getting services in an institution.

Work requirements– Rules that say someone must have a job to get Medicaid.

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What is this Action Alert?

You might have already read an older version of this Action Alert. But new things have happened with Medicaid, so we updated the Action Alert. If you read the old Action Alert, you can skip to the section “What is happening with Medicaid right now?”.

Many disabled people in the US get life-saving health care and services through Medicaid. But some people in Congress think the government should spend less money on Medicaid. If Medicaid does not get enough money, people across the country will lose services they need. 

One way Congress is deciding how much money to spend on Medicaid is by working on something called a Budget Resolution. The Budget Resolution is a plan for how Congress will spend federal money over the next few years. The budget resolution helps Congress set goals for spending and saving federal money. After Congress agrees on what to put in the Budget Resolution, Congress will vote on Budget Reconciliation. Budget Reconciliation is a way for Congress to quickly vote on some kinds of bills about spending federal money. To learn more about the Budget process, read our toolkit, Follow the Money: The U.S. Budget and You. There are plain language and Easy Read versions of the toolkit. 

This action alert will tell you how to set up meetings with your legislators’ offices about the Budget Resolution and Medicaid. This action alert will also tell you how to call your legislators’ offices on the phone about the Budget Resolution and Medicaid. Legislators are the people in government who can vote on laws. In Congress, there are 2 parts, and each part has their own legislators. The Senate is one part of Congress. Legislators in the Senate are called Senators. The other part of Congress is the House of Representatives. Legislators in the House of Representatives are called Representatives. 

Meeting with legislators in Congress about the Budget is an important way to stand up for Medicaid. In this action alert, we will give you information to make meeting with your legislators easier. This action alert will help you meet with your legislators’ offices even if you have never done that before. 

The Budget process has a lot of steps. We will be updating this Action Alert after each step happens. To see what is happening with the Budget process right now and what you can do to protect Medicaid, skip to the section of this Action Alert called “What is happening with Medicaid right now?”.

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What is Medicaid? What services does Medicaid help people get?

Medicaid is a program run by the government to help people pay for health care and services. Medicaid helps people who do not have a lot of money. Medicaid also helps people with disabilities. A lot of disabled people need Medicaid to pay for health care and services. 

When we say health care, we mean things like:

  • doctors appointments, 
  • getting medication, 
  • having surgery. 

When we say services, we mean things like:

  • having someone help you with daily tasks at home, 
  • getting rides to work, 
  • learning skills in your community. 

Medicaid is called something different in every state. For example, in California, Medicaid is called Medi-Cal.

Without Medicaid, many disabled people would not be able to get health care and services. Without Medicaid, many disabled people would die. You can learn more about Medicaid by reading our toolkit, A Self-Advocate’s Guide to Medicaid.

The federal government is the government for the whole U.S. The federal government pays for some parts of Medicaid services. State governments pay for the other parts of Medicaid services. If the federal government decides to spend less money on Medicaid, states have to pay more money for Medicaid services. 

For example (This is an imaginary situation. These numbers are not real):

The federal government gives $350,000 to Idaho for Medicaid Services.
Idaho also has $350,000 of its own money for Medicaid.
That means Idaho has $700,000 total to pay for Medicaid.

But then, the government decides to stop giving Idaho money.
That means Idaho now only has $350,000 to pay for Medicaid.
Idaho needs to figure out how to pay for the rest of Medicaid.

What happens if a state decides not to pay more money for Medicaid? Then, the state has to cut Medicaid services for the people who live in that state. Cutting Medicaid services means that some Medicaid programs will go away or be harder to get. If a state cuts Medicaid services, disabled people might have to spend more of their own money on health care. When someone pays for health care using their own money, that is called paying out-of-pocket. Many disabled people can’t afford to pay out-of-pocket. That means if a state cuts Medicaid services, disabled people might not be able to get the services they need.

One thing that Medicaid helps people get are Long Term Services and Supports (LTSS). LTSS are services that help people with disabilities live our everyday lives. Some kinds of LTSS are job coaches and in-home helpers. LTSS can happen in institutions or in people’s homes or the community. When people get LTSS at home, that is called Home and Community-Based Services (HCBS).

When someone gets HCBS, they get something called a waiver. States have to decide who gets a waiver. There usually is not enough money for everyone who needs a waiver to get one. Some people end up on long waitlists while they wait for a waiver.

If states have to cut Medicaid services, HCBS waiver programs are usually the first services to go away. That’s because the law says states don’t have to pay for waiver programs. It is the state’s choice to pay for HCBS.

But we know waiver programs are very very important. People need HCBS waiver programs to survive and live in their communities.It would be a big problem if states started spending less money on HCBS. People may have to wait a very long time to get the services they need. And some people will not be able to get the services they need at all. Without HCBS, some people will have to live in institutions instead of at home. People might get forced to live in institutions, even if they do not want to.

We do not want the federal government to spend less money on Medicaid. We do not want the federal government to do anything that makes it harder for people to get Medicaid services. We do not want the federal government to make states pay more for Medicaid services. We know if this happens, states will cut important programs like HCBS.

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What is happening with Medicaid right now?

Medicaid and the Budget Process

The House of Representatives and the Senate need to pass and agree on a Budget Resolution before they can write the Budget Reconciliation bill that would cut Medicaid. The House and the Senate can both write their own Budget Resolution, but will eventually have to agree on one version. That means that Representatives will vote on the Budget Resolution in the House. Senators will vote on the Budget Resolution in the Senate. 

One part of the House of Representatives is called the Energy and Commerce Committee. They get called House E&C for short. House E&C makes choices about Medicaid and many other programs.

When the Senate votes on their Budget Resolution, the resolution goes to a smaller part of the Senate. This part is called the Senate Finance Committee. The Senate Finance Committee will have to make choices about cutting money from Medicaid.

The House of Representatives’ Budget Resolution tells the Energy and Commerce Committee to cut spending on their programs by $880 Billion. Cutting this much money means House E&C would have to cut a lot of money from Medicaid.

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The Most Recent Updates

Both parts of Congress, the House and the Senate, have passed a budget resolution now. The budget resolution says the government needs to cut 880 billion dollars from government programs. The government wants to cut this money from the part of the government in charge of Medicaid. It is impossible to take away 880 billion dollars without cutting Medicaid. We made a short video that explains why, which you can watch here. 

The House voted on the same budget resolution as the Senate. But the budget resolution has different instructions for the House and the Senate. The instructions for the Senate makes it look like the Senate does not want to cut Medicaid.

But this is not true! The leaders in charge of the House and Senate said they want to cut at least $1.5 trillion dollars from the budget. This is not possible without large cuts to Medicaid.

The House says they are not cutting Medicaid for anyone who needs it, but that is not true either. Medicaid is a big part of the budget. It is impossible to make cuts that large without taking away Medicaid for people who need it. Cutting Medicaid will make people lose services that let us live in our communities.

ASAN thinks it is really bad that the budget resolution passed. A big part of the budget resolution focuses on cutting taxes for rich people. The government should focus on helping disabled people live in our communities instead. The budget resolution will take money away from government programs to help billionaires pay less money in taxes. The budget resolution shows that some people in the government think rich people are the most important. They care more about tax cuts for very rich people than helping disabled people get health care and services. This is wrong.

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What can we do now?

For how to set up meetings with your Representative and Senators’ offices, click here. 
For how to call your Representative and Senators’ offices, click here.
For how to email your Representative and Senators’ offices, click here.

  • Call your elected officials. Say you want them to tell their committee to protect Medicaid when making the budget.
    • You can use our script:
      • “Hi, my name is [your name]. I am a constituent of [Representative or Senator] [their last name]. I am calling today to ask the [Representative/Senator] to tell their committee to protect Medicaid from cuts and harmful changes for anyone currently receiving services. Please tell them that I do not want cuts to Medicaid. Any cuts will cause [your state] to cut services. I also do not want changes that add more rules to who can get Medicaid, like work requirements or more frequent disability verification. Thank you.”
    • You can also tell your elected official more about why Medicaid matters to you.
  • You can find out who your Representative and Senator are here.
  • If you need some help knowing what to expect during your call, check out this resource.
  • There is a Congressional Recess from April 14th to April 27th. During a Congressional Recess, Senators go back to their states. Representatives also go back to the part of the state they represent. This a great time to schedule an in-person meeting with your Representative or Senators.
    • Your Representative or Senators may hold a meeting with the people they represent during the Congressional Recess. These meetings are usually called town hall meetings.
    • You can go to the town hall and say you do not want cuts or harmful changes to Medicaid. 
    • There may be protests and other actions you can join as well.
    • April 17th is the Medicaid Day of Action. Your Representative or Senators might have an event in your district or online that you can go to.
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Talking about why Medicaid matters to you

Here are some ideas for ways to talk about why Medicaid is important. You can use these talking points to talk about yourself if you get Medicaid services. You can also use these talking points to talk about someone you know, like a family member or loved one, if that person gets Medicaid services.

  • You can talk about a service that Medicaid helps you or someone else pay for. Some examples are:
    • Medications 
    • Doctor’s office visits 
    • Rides to appointments or work
    • Medical devices 
    • Home health care
    • Activities in the community
    • Employment Supports 
  • You can talk about what would happen if you or someone else could not get Medicaid services. 
  • You can talk about how Medicaid services help you or someone else live at home instead of in an institution.
  • You can talk about how Medicaid services help you or someone else survive. Many people would die if they could not get the Medicaid services they need.
  • You can talk about how making it harder for people to get Medicaid services is the same thing as cutting Medicaid. 
  • If Congress decides to make people follow more rules to get Medicaid services, it will be harder for people to get the services they need.
  • If Congress decides to make it harder for health care providers to give people Medicaid services, it will be harder for people to get the services they need.
  • You can talk about how Medicaid helps you or someone else work. Here are some examples of things you could say:
    • I cannot do my job without the services I get through Medicaid. 
    • My loved one could not do their job without the services they get through Medicaid.
    • My job is important to me. I cannot work if I am very sick. Without the services I get through Medicaid, I would get very sick or die.
  • You can talk about how Medicaid helps your caregiver(s) work. Here are some examples of things you could say:
    • If I cannot get services through Medicaid, my caregiver(s) will not be able to work. They would need to take care of me instead. 
    • If I cannot get help going to appointments through Medicaid, my caregiver(s) would need to take me instead. My caregiver(s) would need to call out of work to take me to my appointments. My caregiver(s) could get in trouble at work or lose their job for calling out of work too much.
  • If you do not work, you can talk about how work requirements would hurt you. Work requirements are rules that say someone must have a job to get Medicaid. Here are some examples of things you could say:
    • I cannot work because of my disability. Medicaid is the only way I can pay for my health care. If Medicaid did not pay for my health care, I would not be able to get health care. If I can not get health care, I will get very sick or die.
    • A 2023 study shows that 2 out of 3 adults on Medicaid already work. These people are all working without work requirements in place. And many people who work still need Medicaid. That’s because their jobs do not give them health insurance. 
    • Work requirements and other cuts to Medicaid make it harder for people to work. Here is a fact sheet about Medicaid and employment. 
  • If you work, you can talk about how eligibility checks cause problems for you. Eligibility checks are when the government makes you fill out paperwork to prove you should still get Medicaid. Adding more eligibility checks for Medicaid would make it harder for people to work. Here are some examples of things you could say:
    • My disability will not go away. The government does not need to make sure I am disabled more than once per year. 
    • Making me prove I am disabled more often means I have to miss work more. If I have to miss more work, I could get in trouble or fired.
    • Making me prove I am disabled more often means I have to see my doctors and caregivers more. 
    • Making me prove I am disabled more often makes me, my care team, and the government fill out more paperwork. 

If you have a personal story about Medicaid services, you can share it in your meeting. Personal stories help legislators understand that the policy choices they make have real-life effects on people. For tips on how to share your story, read this toolkit.

Remember: sometimes, the person you are meeting with or calling might ask you a question you do not know how to answer. If that happens, you can say, “I don’t know, but I will get back to you”. Don’t try to make up an answer. You can find the answer after the meeting or phone call. You can send the answer to the person you met with in an email. You can always reach out to ASAN for help answering a tough question!

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How can I talk to my legislators about Medicaid?

Before you meet with a legislator, make sure you are their constituent. A constituent is someone who lives in the place that their legislator represents. Constituents are the ones who vote for their legislator. That’s why legislators should care about what their constituents have to say.

One way we can talk to legislators about Medicaid is by having meetings. 

Face-to-face meetings with legislators are one of the most important tools advocates have. This is because legislators can’t ignore people who are right in front of them talking about a problem. It also helps them put a “face” to a certain problem or law. Legislators could think of you and your story when they make decisions about Medicaid. That could affect the way they vote when it comes to Medicaid. You can ask for a meeting to talk to your legislators about Medicaid!

Another way we can talk to legislators about Medicaid is by calling them. 

Calling your legislators is a helpful tool. Many constituents calling about a problem tells your legislators how many people care about it. It tells them how the people they represent want them to vote about that problem. That is why it’s important to keep calling your legislators about Medicaid. This reminds your legislators that funding Medicaid is important to the people they represent.

Another way we can talk to legislators about Medicaid is by sending emails to their offices.

The staff members who work for legislators do not always read the emails people send them. Legislators get a lot of emails. If you can meet with your legislator or call them, it is more likely your legislator will get your message. If you cannot meet with your legislator or call them, emailing your legislator is still a useful tool!

We need people to meet with, call, and email their Representatives and Senators. Tell your Representatives and Senators how important Medicaid is for our community! You can use the talking points in the section above called “What can we do now?” to plan what to say in your meeting, call, or email. You can also use the scripts below to plan what to say in your meeting, call, or email. 

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How can I request a meeting with my legislator?

Legislators have multiple offices. They usually have one office in Washington, DC. Washington, DC offices are the best places for advocates to talk to their legislators about Medicaid right now. Here is how to ask for a meeting with your legislator’s district office: 

  • If you are not sure who your legislators are, you can find out here.
  • Go to this website.
    1. Click on “Representatives”. 
    2. Search for your state. 
    3. Click on your Representative’s name. This will take you to your Representative’s website.
  • On your Representative’s website, look for a list of office locations. Every Representative’s website is different. Here are some common places to find the list of office locations:
    1. You may need to search “office locations” in the search bar on the website. 
    2. You may need to scroll down to the bottom of the home page.
    3. You may need to click “Contact” on the menu bar. 
  • Find the Washington, DC office location.
  • You can call the phone number listed with the DC office. You can also email the email address listed with the DC office. Some offices might not have an email address listed.
  • You might not be able to find contact information for your Representative’s DC office. If that happens, call the phone number on the homepage of your Representative’s website. Ask the person who answers your call to connect you with your Representative’s DC office.
  • When you connect with your Representative’s DC office, you can use the template below to ask for a meeting with your Representative. You can say the words in this template on a phone call or send it in an email. Fill in the blanks and highlighted parts with your own information:

Subject: Constituent Meeting Request

Hello ______________, 

I am a constituent from ________(city, state)________ . I would like to meet with you to talk about how important Medicaid is to me and other people in our state.

Could you please let me know what dates and times in the coming weeks would work for a meeting? [You can say you would like a virtual meeting.] I look forward to hearing back from you. 

Sincerely,

Your name 
Your home address [This shows you are their constituent.] 
Your phone number 
Your email address

Make sure you say that you are a constituent. Constituent means that you live in the place that your Representative represents. Constituents are the ones who vote for their Representative. So Representatives care the most about what their constituents have to say. 

You will probably meet with a member of your legislator’s staff instead of your legislator. Legislators are very busy. That is why they have staff to meet with constituents about important issues. The staff will take notes at the meeting and give the notes to your legislator. Most legislators will let you choose to meet with staff in person or have a virtual meeting.

If you sent an email to your district office, you may not get an answer to your first email. If you do not hear back within 3 weekdays, you can follow up. That means you reply to your first email and ask for a meeting again. 

If you called your district office and no one answered, you can call again the next weekday.

You can follow most of the same steps above to meet with your Senator. The only thing that changes is that you will click on “Senators” in step two instead of “Representatives”.

For more information about virtual meetings with legislators, read this guide. For more information on in-person meetings with legislators, read this guide.

You can use the ideas in the section of this Action Alert called “What can we do now?” to plan what to say in your meeting with your legislator.

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What happens after I meet with my legislator’s staff? 

After your meeting, you can send an email to your legislator’s office to thank them for meeting with you. You can also answer any questions from the meeting in this email. Here is a template you can use to help you write the email.

Subject: Thank you for meeting with me! 

Dear [Name of person you met with], 

Thank you for taking the time to meet with me about Medicaid. I appreciate [your/your office’s] time. 

[If the person you met with had questions you did not know the answer to, you can answer the question here. You can also say: “I will follow up with an answer to your question soon.”]

I would be happy to follow up again and keep in touch with you about Medicaid. Please let me know if you would like me to connect you with policy experts on this issue. Thank you very much!

Sincerely, 

[Your Name]

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How do I call my legislator? 

If you want to call your legislator but you can not talk on the phone due to a disability, you can use our proxy caller system! The proxy caller system lets volunteers call your legislators for you. You can sign up here, and a volunteer will tell your legislator your message and questions. You can learn more about our proxy caller system here. If you want to help people call their legislators, learn how to volunteer to be a proxy caller here!

If you can call your legislator yourself, follow these steps:

  • If you are not sure who your legislators are, you can find out here.
  • Go to this website.
    1. Click on “Representatives”. 
    2. Search for your state. 
    3. Click on your Representative’s name. This will take you to your Representative’s website.
  • On your Representative’s website, look for a list of office locations. Every Representative’s website is different. Here are some common places to find the list of office locations:
    1. You may need to search “office locations” in the search bar on the website. 
    2. You may need to scroll down to the bottom of the home page.
    3. You may need to click “Contact” on the menu bar. 
  • Find the Washington, DC office location.
  • You can call the phone number listed with the DC office.
  • You can follow most of the same steps above to call your Senator. The only thing that changes is that you will click on “Senators” in step two instead of “Representatives”.

Here is a script you can use when you call your legislator’s office. Be sure to fill in the highlighted parts and blanks with your own information:

Calling Your Representative

Hello! I am a constituent of [House Representative NAME]. I am calling because I want to ask [House Representative NAME] to oppose cuts to Medicaid funding in the budget process. I am asking [House Representative NAME] to tell their colleagues in House leadership and on the Energy and Commerce Committee to oppose any resolution that would cut Medicaid funding or make it harder for people to get Medicaid services.

Medicaid is a lifeline for people with disabilities, like [me/my friends or family]. It funds the programs that allow us to live and work in the community. Without it, many of us literally couldn’t get out of bed or eat independently. 

[If you have a personal story about why Medicaid matters to you, you may add that here. You can use ideas from the section of this Action Alert called “Talking about why Medicaid matters to you” to help you script this part.]

Please tell [House Representative NAME] that Medicaid is important to me and the people I love, and that I ask them to oppose cuts to Medicaid in any form. Thank you, and have a great rest of your day.

Calling Your Senator 

Hello! I am a constituent of [Senator NAME]. I am calling because I want to ask [Senator NAME] to oppose cuts to Medicaid funding in the budget process. I am asking [Senator NAME] to tell their colleagues in Senate leadership and on the Senate Finance Committee to oppose any resolution that would cut Medicaid funding or make it harder for people to get Medicaid services.

Medicaid is a lifeline for people with disabilities, like [me/my friends or family]. It funds the programs that allow us to live and work in the community. Without it, many of us literally couldn’t get out of bed or eat independently. 

[If you have a personal story about why Medicaid matters to you, you may add that here. You can use ideas from the section of this Action Alert called “Talking about why Medicaid matters to you” to help you script this part]

Please tell [Senator NAME] that Medicaid is important to me and the people I love, and that I ask them to oppose cuts to Medicaid in any form. Thank you, and have a great rest of your day.

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How do I email my legislator? 

  • If you are not sure who your legislators are, you can find out here.
  • Go to this website.
    1. Click on “Representatives”. 
    2. Search for your state. 
    3. Click on your Representative’s name. This will take you to your Representative’s website.
  • Most Representatives have a form on their website to get messages. They want people to fill out this form instead of sending an email. Here is how to find the form.
    1. On your Representative’s website, look for a button that says “Contact” or “Email”.
    2. When you click on the button that says “Contact” or “Email”, you might be asked to type in your ZIP Code. This is to make sure that you are a constituent.
    3. After you enter your ZIP Code, a form will pop up. You can fill in your contact information and write your message.
  • You can follow most of the same steps above to email your Senator. The only thing that changes is that you will click on “Senators” in step two instead of “Representatives”.

Here is a template you can use to write an email to your legislator. Be sure to fill in the highlighted parts and blanks with your own information. 

Emailing Your Representative

Hello! 

I am a constituent of [House Representative NAME]. I am calling because I want to ask [House Representative NAME] to oppose cuts to Medicaid funding in the budget process. I am asking [House Representative NAME] to tell their colleagues in House leadership and on the Energy and Commerce Committee to oppose any resolution that would cut Medicaid funding or make it harder for people to get Medicaid services.

Medicaid is a lifeline for people with disabilities, like [me/my friends or family]. It funds the programs that allow us to live and work in the community. Without it, many of us literally couldn’t get out of bed or eat independently. 

[If you have a personal story about why Medicaid matters to you, you may add that here. You can use ideas from the section of this Action Alert called “Talking about why Medicaid matters to you” to help you script this part.]

Please tell [House Representative NAME] that Medicaid is important to me and the people I love, and that I ask them to oppose cuts to Medicaid in any form. Thank you, and have a great rest of your day.

Sincerely,

Your name 
Your home address [This shows you are their constituent.] 
Your phone number 
Your email address

Emailing Your Senator 

Hello! 

I am a constituent of [Senator NAME]. I am calling because I want to ask [Senator NAME] to oppose cuts to Medicaid funding in the budget process. I am asking [Senator NAME] to tell their colleagues in Senate leadership and on the Senate Finance Committee to oppose any resolution that would cut Medicaid funding or make it harder for people to get Medicaid services.

Medicaid is a lifeline for people with disabilities, like [me/my friends or family]. It funds the programs that allow us to live and work in the community. Without it, many of us literally couldn’t get out of bed or eat independently. 

[If you have a personal story about why Medicaid matters to you, you may add that here. You can use ideas from the section of this Action Alert called “Talking about why Medicaid matters to you” to help you script this part]

Please tell [Senator NAME] that Medicaid is important to me and the people I love, and that I ask them to oppose cuts to Medicaid in any form. Thank you, and have a great rest of your day.

Sincerely,

Your name 
Your home address [This shows you are their constituent.] 
Your phone number 
Your email address

ASAN would love to know how about the responses you get to your meeting requests, phone calls, and emails! If you want to share your experience with us, please email Jules Good, ASAN’s Programs Coordinator, at jgood@autisticadvocacy.org . 

Thank you for taking action to defend Medicaid and protect health care for the disabled community!

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