Medicaid: Let’s Fight for Our Health and for Services in the Community

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Healthcare is really important for people with disabilities. Without access to the health care and services we need, people with disabilities will live worse lives. 

Healthcare costs a lot of money. A lot of people with disabilities need government programs to help us pay for healthcare and stay healthy. Medicaid is a program in the United States that helps people pay for healthcare. Programs that help people pay for healthcare are called health insurance programs. Medicaid is a health insurance program run by the United States government. The federal government and each state government work together to run Medicaid. 

Medicaid is used by a lot of people. About 1 in five people use Medicaid to pay for their healthcare. Lots of people with disabilities use Medicaid. Medicaid is one of the only programs that pays for all of the services and supports we need. 

Every state in the United States has a Medicaid program. Every state has rules that explain what the state does and doesn’t cover in its Medicaid program. ASAN wants rules that make it so a state’s Medicaid program can cover more things. 

Even though Medicaid is important, some people want to cut out parts of Medicaid and make it do less. This is because they think Medicaid is too expensive. ASAN fights for Medicaid because so many of us need it to live healthy lives in the community. 

In this section we will talk about who and what Medicaid covers, how the government pays for Medicaid, threats to the Medicaid program, and how you can help protect Medicaid. ASAN also wrote a toolkit on Medicaid that you can read to get more information. 

Who Medicaid Covers 

Not everyone can get Medicaid. Medicaid is for people who don’t have very much money. For example: 

  • Some people with disabilities 
  • Pregnant women 
  • Kids 
  • Some older adults
  • Other adults who don’t have very much money.

To get Medicaid, none of these types of people can make more money than the Federal Poverty Level, which is $11,880 for one person. The Federal Poverty Level is not a lot of money. People can make more than the Federal Poverty Level and still not be able to pay for basic expenses like food and transportation. 

After the Affordable Care Act was passed, some people can also get Medicaid using the Medicaid Expansion. 37 states have expanded Medicaid to include people who make a little more than the Federal Poverty Level if they really need help paying for health care. 

Some states have special rules that let kids with disabilities who have really expensive health care needs get on Medicaid even though their parents make too much money. Some adults with disabilities also make too much money to normally get Medicaid, but still need help paying for health care. Some states have decided to help some of these people pay for their healthcare through a Medicaid Buy-In Program. This program lets people with disabilities pay some money every month to stay on Medicaid.  

What Medicaid Covers 

Medicaid coverage refers to what services are paid for by Medicaid. If Medicaid “covers” a service, that means that Medicaid will pay for that service. The federal government made a list

of services that every state has to use Medicaid to pay for. These services are called mandatory benefits.

Mandatory benefits include things like: 

  • Getting a check-up at the doctor’s office
  • Medical care that has to happen in a hospital, like surgery
  • Staying overnight at a hospital
  • Family planning, like birth control 
  • Home health care (like a nurse who comes to your house)

State Medicaid programs can also choose to pay for some services that are optional benefits. The state doesn’t have to pay for optional benefits, but a lot of states do anyway. For example: 

  • Eyeglasses 
  • Medicine you get at the pharmacy
  • Going to the dentist 

Long Term Services and Supports 

An important optional benefit is Long Term Services and Supports. Long Term Services and Supports are things like personal attendants, job coaches, and nursing homes. They are services some people with disabilities will need for our entire lives. Every state covers long term services and supports, even though it is optional under Medicaid. This is because long term services and supports are really important for some people with disabilities. We need these services to live in the community. 

Most health insurance programs don’t pay for these kinds of services. The Medicaid program is one of the only programs in the whole country that pays for long term services and supports. This is one of the reasons Medicaid is so important for people with disabilities. To get long term services and supports, most of us need to be on Medicaid! 

Long term services and supports can be given to you in the community and in institutions. Home and community-based services (HCBS) are the type of long term services and supports you get in the community. Most people with disabilities want to get long term services and supports in the community. 

But there is a problem. HCBS are an optional benefit. That means that State Medicaid programs do not have to pay for HCBS for everyone that needs them. 

Instead, most States offer HCBS on programs called Medicaid waivers. States get to decide how many people can get services withMedicaid Waivers. States also get to decide what group of people can be in a Medicaid Waiver. For example, a state can decide a waiver is only for children, or only for people with a specific disability. The state can also put people on waiting lists instead of giving people HCBS right away. This means that a person who wants HCBS might have to wait a long time for these services. 

All of these things can keep people from getting services they need. If someone can’t get HCBS through a waiver, they might have to go into an institution.

HCBS programs and HCBS providers do have to follow some rules. In particular, they have to follow the Home and Community-based Settings Rule (HCBS Settings Rule). We talk a lot about the HCBS Settings Rule in our toolkit This Rule Rules!: The HCBS Settings Rule and You. 

ASAN wants to make HCBS better. We want everyone who needs services to be able to get good HCBS right away. We advocate for a better HCBS system. 

Threats to the Medicaid Program 

Even though Medicaid is important, some people want to cut out parts of Medicaid and make it do less. This is because they think Medicaid is too expensive. Here are some of the things people want to do to make Medicaid worse. 

They want to make people work a certain number of hours to get Medicaid. They want to do this by creating rules for getting on Medicaid called work requirements. The rules would require some of the people on Medicaid to work, volunteer, or go to school to keep being on Medicaid. You would have to do these things for a certain number of hours per week. 

Work requirements are really bad for everyone on Medicaid, including people with disabilities. This is why: 

  • You have to file a lot of paperwork to prove you’ve gone to work for the right number of hours. There would be so much paperwork that it would be hard for the state to handle it all. Some people might get their coverage taken away by accident. The paperwork could also be really difficult to fill out for people with some kinds of disabilities. They would lose their Medicaid.
  • Some people are working but not for enough hours, or have work schedules that change a lot. In a state with work requirements, these people would lose their Medicaid.
  • States are supposed to excuse people with disabilities from work requirements. But the state decides who has a disability. Most states say someone has a disability if they are getting social security. But, a lot of people with disabilities don’t get social security and still need Medicaid. In a state with work requirements, they would lose their Medicaid.
  • In the past, lots and lots of people with disabilities have lost their government benefits because of work requirements. When work requirements were used in programs like the Supplemental Nutrition Assistance Program (SNAP), which helps people pay for food, lots of people lost benefits. The same thing would happen with Medicaid. 
  • Research shows that work requirements don’t actually help more people get jobs. Instead, they just take away benefits. 

They want to end the Medicaid expansion. Some people want all the states to go back to how Medicaid worked before the Affordable Care Act was passed. This would mean that most people could no longer make more than 100 percent of the Federal Poverty Level and still get Medicaid. Since lots of people get Medicaid through the Medicaid Expansion, lots of people would no longer be able to get health care. 

They want to limit the amount of money the federal government spends on Medicaid by changing how the government pays for it. They want to make it so that either the U.S. government gives each state a specific amount of money each year (called a block grant), or the U.S. government gives the state a specific amount of money for each person on Medicaid, which is called a per capita cap. Both of these changes would probably make Medicaid cover fewer people or cover fewer things. For more information about why, you can read our Medicaid toolkit. 

They want to make people on Medicaid pay more money.  Medicaid is supposed to give health care to people who need help paying for it. Because of this, Medicaid has rules that limit how much money the people in the program have to pay. Some people in government want to get rid of these rules or make them worse. Without these rules, people using Medicaid would have to spend more of their own money, even though they don’t have a lot. This means people wouldn’t be able to afford the health care they need, even with Medicaid. And if they can’t pay, they might get kicked off Medicaid. Then they would have no health care at all.

How You Can Help Protect Medicaid 

There are some things you can do to help protect Medicaid. 

  • If you use Medicaid, tell your Members of Congress how important Medicaid is to you. You can talk about how Medicaid pays for your health care or for home and community based services at your house (if you get them). You can contact your Senator or your Representative. ASAN’s Civic Engagement Toolbox For Self-Advocates tells you how to contact your Members of Congress. 
  • Work with ASAN on one of our campaigns to protect Medicaid. ASAN talks a lot about Medicaid and why it is important. For example, ASAN did a #ProtectOurCare postcard campaign.  Participate in our campaigns and help us win this fight for good. 

Share your story on how Medicaid has helped you.  You can go to to share your story with us. You could also make a blog post or a Facebook post about why the Medicaid program is critical for people with disabilities.