Recent changes to Medicaid and the Supplemental Nutrition Assistance Program (SNAP) are affecting people in very real ways. For many people with disabilities and their families, these changes can impact access to food, health coverage, and the supports and services they need to live and work in their communities.

At The Arc, we are hearing from people across the country who are losing benefits, facing confusing paperwork, and struggling to get answers when something goes wrong.

For people with disabilities, the biggest risk is not always that they no longer qualify for benefits. The risk can also come from missed notices, paperwork problems, reporting requirements, or conflicting information from an overwhelmed system.

The stories below show what that can look like in real life.

Diane’s Story: When Paperwork Problems Put Medicaid at Risk

Diane’s family is one of those feeling the weight of these changes.

Her son Jonathon has cerebral palsy, a lifelong disability caused by a lack of oxygen at birth. He also has an intellectual disability, a history of seizures, and anxiety. When Jonathon was born, doctors told his family he might never walk or talk.

For years, Medicaid and waiver services helped Jonathon get the support he needs to work and live in his community. Those services included speech, physical, and occupational therapy, as well as behavioral support that helped him succeed.

Then he suddenly lost Medicaid coverage.

Over the last 18 months, Diane has faced repeated paperwork requests, billing errors, clerical mistakes, conflicting information, and long delays. When she contacted Medicaid, she was given different explanations for why her son lost Medicaid. They told her Jonathon earned too much money. They told her his disability was not severe enough. She even received paperwork stating that his cerebral palsy lasted only “from birth to age 5.”

But cerebral palsy is a lifelong disability.

“The communication has been poor, and every time I call or go into the office, I am told different things,” Diane said. “Young adults who require support but want to work are being denied their supportive services that allow them to be successful.”

She worries that without continued support, her son could lose the services that help him remain independent and employed.

Stacy’s Story: Losing SNAP Means Struggling to Afford Food

Stacy is autistic, has ADHD, and lives with serious mental illness. She recently lost her SNAP food benefits because she was considered “able-bodied” and not working. She is applying for disability benefits, but that process takes time.

Now, Stacy relies on her elderly parents to help cover the cost of food. She wants people to understand what losing food assistance really means.

“Taking away our food is the last thing that should be done. We literally cannot survive without it. Please don’t make things even more difficult for the people who need help the most.”

Nancy’s Story: Losing Medicaid Makes Healthcare Harder to Afford

Nancy shared the story of her grandson, who is 21 years old and lives with a difficult-to-control seizure disorder.

He works three part-time jobs, but many jobs are not safe for him because of his seizures. Last year, he lost access to Medicaid.

Now, his family struggles to make up the difference. His seizure medication costs more than $400 per month, and specialist care, lab work, and testing can be expensive.

“Family helps out as much as possible,” Nancy said. “But losing Medicaid has put a tremendous strain on my grandson.”

What These Stories Show

These stories remind us that even if people with disabilities may be protected by certain rules on paper, they can still be harmed by paperwork problems, delays, confusion, and coverage losses.

And Medicaid and SNAP changes don’t just affect the people who receive these benefits. Families, caregivers, service providers, and communities can also feel the effects when people lose access to food, healthcare, and other supports.

What You Can Do Right Now

Changes to Medicaid and SNAP may look different in each state and happen at different times. If you or a family member receives Medicaid, SNAP, or other benefits, here are some steps you can take to stay informed and prepared:

• Make sure your address, phone number, and email are up to date.
• Watch for letters, emails, texts, or notices from your state Medicaid or SNAP office. Open them right away and respond as quickly as you can.
• Keep copies of important forms and paperwork.
• Ask for help if you receive a notice that you do not understand.
• Stay connected with your local chapter of The Arc to learn about changes in your community that may affect you.

Help Protect Medicaid and SNAP

The Arc is working to protect Medicaid, SNAP, and other programs that people with disabilities and families rely on. Your story can help policymakers and community leaders understand how these programs affect people’s lives and why they matter.

Visit TheArc.org/Action to share your story and find ways to take action.