The federal government has established a new rule that could make it harder for people who need AAC to keep Medicaid. We need your help to fight this! Please send in your comments by July 31, 2026 at 11:59 pm Eastern Time.
In 2025, Congress passed H.R. 1, which created new restrictions on Medicaid access for many adults. This is the first time in the history of the Medicaid program that states have been required to take away Medicaid from adults who don’t meet “community engagement” requirements.
When they passed this law, Congress promised that people with disabilities and serious medical conditions would be protected from losing their Medicaid.
But a new rule from the Centers for Medicare and Medicaid Services (CMS) would make many people with disabilities and serious medical conditions prove, again and again, that their disability prevents them from working, volunteering, attending school, or providing caregiving activities for at least 80 hours a month.
These requirements will apply to adults in Medicaid “expansion” programs. That includes many people who are waiting for their Social Security disability applications to be approved, people who temporarily went over the asset limits for Supplemental Security Income (SSI), and people who recently qualified for Social Security Disability Insurance (SSDI) but are not yet eligible for Medicaid.
The new rule could affect people who need AAC tools and supports, including:
-
- People who have already been found to be disabled by the Social Security Administration.
- People with ALS, cancer, and other serious medical conditions.
- People with autism, cerebral palsy, intellectual disabilities, and other developmental disabilities.
- People with psychiatric disabilities and people recovering from substance use disorders, who rely on Medicaid to stay stable.
Even if someone already has documentation showing they are disabled, the new rule may require them to prove something additional to keep Medicaid: that their disability significantly impairs their ability to satisfy this new requirement to work or volunteer at least 80 hours per month.
This creates new paperwork and new barriers, as well as new opportunities for disabled people to lose their healthcare coverage and related supports provided by Medicaid. States generally do not already have the kinds of records they would need in order to decide whether someone is able to meet the “community engagement” requirements.
In practice, this could look like:
-
- Marcus is a 28-year-old AAC user with cerebral palsy who works part-time at a local library. With services he received from the Ticket to Work program, including a speech-generating device, he is able to work more than 80 hours per month and begins getting his healthcare through the Medicaid expansion. A few years later, Marcus loses some of his support services when a caregiver passes away and transportation becomes unreliable. He can no longer consistently work enough hours to meet the community engagement requirement. The Medicaid agency requests proof that his disability significantly impairs his ability to satisfy the 80-hour requirements, citing his past work history. Marcus already has extensive documentation of his disability, but under the new Interim Final Rule, that may not be enough. If the State Medicaid Agency decides that he has not provided enough evidence, he could lose the Medicaid services that he needs to stay healthy.
-
- Priya has been diagnosed with ALS at age 43. She leaves her job so that she can focus on treatment and goes on the Medicaid expansion while she applies for Social Security Disability Insurance (SSDI). The State Medicaid Agency sees that she has ALS and gets SSDI, but asks for extra doctor’s notes and paperwork to prove that she can’t work or volunteer. Priya has a hard time communicating with the Medicaid agency about what kind of proof she needs to show. If she misses the deadline, she will lose Medicaid and lose access to important medications that protect her life and independence.
We do not want these situations to become a reality for people who need AAC. We need your help to take action now.
Legally, the government has to read and consider comments from the public about this rule. In your comments, you can ask CMS to:
-
- Honor Congress’s promise to protect people with disabilities and serious medical conditions.
- Automatically exempt people who have already been found disabled by the Social Security Administration.
- Automatically exempt people who have serious health conditions, such as ALS or cancer, as well as people with significant psychiatric disabilities and people recovering from substance use disorders.
- Recognize communication disabilities and communication support needs when determining eligibility.
- Ensure that people do not lose Medicaid because of confusing documentation requirements that are too difficult to understand or navigate.
Personal stories are helpful! If you feel comfortable discussing how these requirements could affect you and your loved ones personally, please tell your story in your comment.
Comments are due by July 31, 2026, at 11:59 pm Eastern Time. Comments can be submitted on a website, by email, or by postal mail. We recommend sending electronic comments to ensure that they are received before the deadline.
See the instructions below for how to submit comments in one of three ways:
1. To submit your comments electronically, please visit the Federal Register’s posting of the Interim Final Rule and open comment period. Click on the green button on the right-hand side of the page that reads, “Submit a Public Comment.”
-
-
-
- There is a 5,000 character limit for comments. If you want to say more than that, you can put your comments in a Word or PDF file to attach. You can also attach some other kinds of files, like pictures.
- Next, navigate to the “What is your comment about?” section. If you are not sure which answer is correct, choose “Individual.” If you are a service provider, or a member of an organization, agency, or other association, pick the description that best describes your position.
-
-
-
-
-
- Enter your email address and check the box if you would like to get email confirmation. This will be helpful if you want to ensure your comments have been received and to receive a tracking number.
-
-
-
-
-
- In the “Tell us about yourself! I am …” section, please select “An Individual” (assuming you are an individual person submitting comments and not sharing comments on behalf of your employer). You will be prompted to fill in your first and last name along with other information if you wish to share. You can also choose to remain anonymous in your submission and select that option. When you are navigating this section, please do not write that you are submitting comments on behalf of CommunicationFIRST as an individual or an organization. These comments should be submitted in your own name or affiliation (unless you are submitting anonymous comments and do not want to include this information).
- When you are ready to submit your comments, please select the box that reads, “I read and understand the statement above.” When you select this, you are stating that you understand that your comment and attachments may be publicly seen by other people. You can preview your comment before submitting to make sure that you feel ready to submit it. Once you are ready, select the green button that reads “Submit Comment.” Now, your comment is submitted to CMS.
-
-
2. To submit your comments by regular postal mail, you can send them to: Centers for Medicare & Medicaid Services, Department of Health and Human Services, Attention: CMS-2454-IFC, P.O. Box 8016, Baltimore, MD 21244-8016. Make sure to refer to file code “CMS-2454-IFC” in your comment — that way they know which regulation you are writing about.
3. To submit your comments by express or overnight mail, you can mail them to the following address: Centers for Medicare & Medicaid Services, Department of Health and Human Services, Attention: CMS-2454-IFC, Mail Stop C4-26-05, 7500 Security Boulevard, Baltimore, MD 21244-1850. Make sure to refer to file code “CMS-2454-IFC” in your comment — that way they know which regulation you are writing about.
You can also tell your state legislators, governor, or State Medicaid Agency that people with disabilities should not have to repeatedly prove that they deserve healthcare. Our colleagues at the Autistic Self Advocacy Network have a plain language resource on how you can contact your federal and state legislators and encourage them to advocate against this rule to your governor and State Medicaid Agency.
Download post in PDF form. Access post via Google Doc.
Image Description and Credit:
A small group of people use a laptop outdoors. A closeup shot focuses on their hands. Credit: Norma Mortenson.