Congress passed a new law that made cuts to Medicaid called Public Law 119-21. This law says that some adults with low income who get health coverage through Medicaid will need to report their work or community activities to the state in the future.

If you get Supplemental Security Income (SSI) and Medicaid, this law does not affect you. If you receive Medicaid home and community-based services, this law should also not affect you.

Nothing is changing right now. Changes may happen in your state in the next few years.

In this blog, we explain:

• Who may need to report work or activities.
• Who does not need to report.
• What you can do now to protect your Medicaid.

Remember: Medicaid may have a different name in your state.

Who may have to report work or activities?

The new rules will affect adults who:

• Are 19–64 years old.
• Get Medicaid through Medicaid expansion.
• Lawmakers have decided may be exempt. Exempt adults do not need to report. You can find out more about who is exempt below.

What is Medicaid expansion?

Some states give Medicaid to adults with low income, even if they don’t have children. This is called Medicaid expansion. Check if your state has Medicaid expansion.

What counts as work or community engagement activities?

You may need to report things like:

• Working at a job (even part-time)
• Working for yourself
• Volunteering or helping in the community
• Going to school or job training

How reporting works:

Each state will decide:

• How often you must report
• How you report (online, by phone, or in person).

Who should NOT need to report work or activities?

Lawmakers have decided that many people with disabilities and caregivers should not need to follow these rules. They are exempt or free from the rules.

People who are exempt include:

• People who get Medicaid because of a disability, like many people on Supplemental Security Income (SSI).
• People who have serious health needs or need a lot of help every day. These people are sometimes called “medically frail.”
• People who get both Medicare and Medicaid.
• Some family caregivers who provide regular, hands-on help to a person with a disability or serious health problem.

Important: Even if you should not need to report, mistakes can happen. Always read your mail from Medicaid. Get help if you get a letter about reporting work or community activities.

What you can do now:

• Keep copies of any letters that show you get Supplemental Security Income, Social Security Disability Insurance, a Medicaid waiver, or other disability benefits.
• Keep letters or reports from doctors that explain your disability or the help you need.
• If you get a notice saying you must report work and you have a disability, contact your local chapter of The Arc or legal aid right away.

Family Caregiver Information

You may not have to report work if you are a family caregiver and you:

• Give regular, hands-on care to a person with a disability or serious health need.
• Help with things like dressing, eating, bathing, taking medicine, behavior support, getting around, or communicating.

What you can do now:

• Write down who you care for and how you help.
  • Example: “I help my adult son with dressing, meals, and seizures every day.”
• Keep papers that show:
  • You are a paid caregiver through Medicaid.
  • A doctor says the person needs your help.
• If you get a letter about work reporting, ask if you qualify for a caregiver exemption.

What Everyone Can Do Now

Even before these rules start, you can:

• Update your contact information.
  • Make sure Medicaid has your current address, phone number, and email.
• Open and read all mail from Medicaid or your health plan.
  • Do not ignore letters, even if they are hard to understand.
  • Ask a trusted person to help you read letters.
• Get help right away if you get a letter asking about work or activities.
  • Contact your local chapter of The Arc, your Protection & Advocacy (P&A) agency, or legal aid.
  • Say: “I have a disability / I am a caregiver. I think I may not have to follow these new rules. Can you help me?”

Where to Get Help

• Your local or state chapter of The Arc. Find a chapter here.
• Protection & Advocacy (P&A) system in your state. Find it here.
• Legal aid or legal services office. Get help here.