Words to Know
Constituents– someone who lives in the place that their Representative represents. Constituents are the ones who vote for their Representative.
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 living in institutions usually did not decide to live there. They were usually put there by someone else. People living in institutions usually cannot leave the institutions when they want to. They usually do not have a lot of rights or control over their lives.
Legislators–the people in government who can vote on laws
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
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.
What is this Action Alert?
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.
This action alert will tell you how to set up meetings with your legislator’s offices about Medicaid. Legislators are the people in government who can vote on laws. They can decide what happens to Medicaid.
That’s why meeting with legislators in Congress is an important way to stand up for Medicaid. 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.
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 legislator’s office even if you have never done that before.
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.
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. 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.
What is happening with Medicaid right now?
The federal government is going to make some important choices about Medicaid soon. The federal government could decide to spend less money on Medicaid. The federal government could also decide to make it harder for people to get Medicaid services.
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.
We need lots of people to tell their legislators that the federal government should not make it harder for people to get Medicaid services. Your legislators need to know how important Medicaid is! 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 that 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!
Right now, it is most important for people to meet with their House representatives. After you ask for a meeting with your representative, you can ask for a meeting with your senators.
How can I request a meeting with my legislator?
Legislators have multiple offices. They usually have one office in DC. They also have at least one office in the part of the state they represent. The offices in the part of the state they represent are called district offices. District 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:
- Go to this website.
- Click on “Representatives”.
- Search for your state.
- 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:
- You may need to search “office locations” in the search bar on the website.
- You may need to scroll down to the bottom of the home page.
- You may need to click “Contact” on the menu bar.
- Find the office location closest to you. This is your district office.
- You can call the phone number listed with your district office. You can also email the email address listed with your district office. Some district offices might not have an email address listed.
- You might not be able to find contact information for your district office. If that happens, call the phone number on the homepage of your Representative’s website. Tell the person who answers your call what town you live in. Ask them to connect you with your district office.
- When you connect with your district office, you can use the template below to ask for a meeting with your legislator. 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 district and 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. Or you can say you would like an in-person meeting at the office in your district]. 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 one instead of “Representatives”. Remember, only meet with your Senators after you’ve met with your Representative.
For more information about virtual meetings with legislators, read this guide. For more information on in-person meetings with legislators, read this guide.
What should I talk about in a meeting with my legislators’ staff?
Your legislators need to know two things. The first thing is that Medicaid is very, very important. The second thing is that the federal government should not make it harder for people to get Medicaid services.
Here are some ideas for ways to talk about those two things. 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.
Medicaid is very, very important
- You can talk about a service that Medicaid helps you or someone else pay for. Some examples are:
- 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.
The federal government should not make it harder for people to get Medicaid services
- 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) would 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.
- 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 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. 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!
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. I’ll
[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]ASAN would love to know how your meetings with legislators about Medicaid go! 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!