A smiling man with a disability sits in a power wheelchair indoors. He is wearing an orange polo shirt, gray pants, and black shoes. Shelves, electronics, and household items are visible in the room behind him.

When Social Security Mistakes Become a Burden: Chad’s SSI Story

/in /by The Arc

A smiling man with a disability sits in a power wheelchair indoors. He is wearing an orange polo shirt, gray pants, and black shoes. Shelves, electronics, and household items are visible in the room behind him.Chad is doing everything he can to follow the rules, but mistakes by the Social Security Administration (SSA) are putting his financial security at risk.

When Chad started a six‑month, part‑time internship, he immediately notified SSA that he was earning income. He knew his Supplemental Security Income (SSI) payment would go down while he was working. But that didn’t happen. SSA kept paying Chad his full SSI benefit.

Chad didn’t want this extra money. He knew it was wrong, and he knew what it could mean later. If SSA decides to collect the overpayment, he could face a large debt. Chad also worries about what will happen when his internship ends and he needs his SSI payments to return to their typical amount.

Chad keeps trying to fix the problem, but the overpayments continue.

He has spent hours on the phone with SSA, sometimes waiting several hours just to have a 10- to 15-minute conversation with someone. He has also reached out to other professionals for help, making sure his records are correct and that SSA knows about the mistake.

SSA has told Chad and the people helping him that it acknowledges the overpayments. Still, the extra payments keep coming each month. For Chad, the stress keeps growing as the months go on and he keeps trying to correct an error he did not cause.

SSI rules can make overpayments even harder to manage.

On top of everything, Chad also has to stay under SSI’s $2,000 asset limit to keep his SSI benefits. That means he has to be careful about how much money he has, even as SSA keeps sending him money that he knows he should not be receiving.

Chad is doing everything he can to avoid going over the limit.

What troubles Chad most is not just what’s happening to him. He also worries about what the system means for other people with disabilities.

He sees people being asked to prove themselves over and over again to keep the benefits they need to survive. He hears leaders talk about “fraud, waste, and abuse,” but his experience has shown him how difficult it can be to navigate the system even when someone is trying to follow the rules.

As Chad put it, “I just don’t understand how these perceptions can go through leaders of Congress… and then create these barriers so that people can’t do things to alleviate the necessity of these programs.”

The fear of losing benefits can make work feel risky.

Chad knows many people with disabilities want to work and do more. But complicated rules, reporting requirements, and the fear of losing benefits can make it feel dangerous to try.

“The stressful part of it is like, okay, I’ll just stay where I’m at because I don’t want to deal with this any more than I already am,” he said.

The system doesn’t just slow people down. It holds them in place, making it difficult for people to take steps toward greater financial independence.

Outdated Social Security systems add to the burden.

Chad also sees how SSA’s own challenges make things worse. Staffing cuts mean long waits and slow responses. As Chad explained, “It’s an administrative burden… they just don’t have the staff to keep up with these things anymore.”

He has also found that SSA’s website doesn’t let him do everything he needs to do. Some tasks still require sending a fax, which he sees as outdated, hard to access, and not secure. From Chad’s point of view, these problems have only gotten worse in recent years.

Removing the SSI asset limit could give people more financial security.

Chad often thinks about how different his life would be if the asset limit were removed. He could save money without fear. He could take on more work without risking his healthcare. He could build a small safety net instead of living month to month.

Removing the SSI asset limit would give him room to breathe, plan, grow, and move forward without being punished for trying.

Chad’s story shows how Social Security’s errors, delays, and outdated systems shift the burden onto the very people the program is supposed to support. It shows why Social Security needs systems and rules that give people with disabilities, like Chad, the possibility to live with dignity, financial security, and hope.

A man with a disability wearing a suit and tie walks through an office hallway using forearm crutches while talking with a woman in a black dress. Both are smiling.

Competitive Integrated Employment: Why Inclusive Employment Is a Win for Everyone

/in /by The Arc

When we think about what a job gives us, a paycheck is usually the first thing that comes to mind. But a good job offers much more than money. It gives us purpose, routine, friendships, and a sense of pride.

For people with intellectual and developmental disabilities (IDD), competitive integrated employment provides these same opportunities. It allows people with disabilities to work in community settings alongside their non-disabled peers, gain new skills, and make meaningful connections.

Why Competitive Integrated Employment Matters

A job can provide more than a paycheck. For people with IDD, meaningful employment can help build skills, confidence, relationships, and greater independence.

Competitive integrated employment also means earning a fair wage. Workers with IDD should earn competitive wages at or above state or federal minimum wage standards and no less than the customary rate paid to their non-disabled colleagues. Earning a fair competitive wage gives people with IDD the financial independence to make more choices about their own lives—from paying rent to buying groceries to pursuing hobbies and building savings for the future.

For decades, many people with IDD have faced significant barriers to employment and financial independence. The Arc works to help change that by equipping local chapters to deliver inclusive employment programs. Meanwhile, our Federal Policy team actively advocates for legislation that would help people with disabilities develop career skills, earn reliable wages and benefits, gain greater financial independence, and participate fully in their communities through stable, accessible workplaces.

How Inclusive Employment Benefits Everyone

Inclusive hiring can benefit employers and employees alike. Workplaces can benefit from:

  • Stronger teams: Employers report benefits such as improved morale and collaboration.
  • New skills and perspectives: People with IDD bring different experiences, strengths, and ways of approaching their work.
  • Committed employees: Employers also report strong job loyalty among workers with IDD.

And people with IDD gain opportunities to build skills, grow in their careers, and contribute to their communities.

Celebrating Disability Employment Awareness Month

October is National Disability Employment Awareness Month, a time to celebrate the incredible contributions of workers with disabilities and remind our communities of the power of inclusive workplaces.

This year, thanks to the generous support of The Coca-Cola Company, The Arc is launching a new one-year initiative, Employment Pathways for Individuals With IDD.

Building on the success of the NEON Project, this initiative aims to use evidence-informed employment strategies to connect people with IDD to meaningful, competitive employment opportunities while strengthening their workforce readiness. Through this initiative, participating chapters of The Arc will work with local businesses to identify and create employment opportunities that meet business’ needs and are a good fit for job seekers with IDD. Chapters will help pair job seekers with roles where they can excel and will provide the hands-on support needed to ensure long-term success and growth, while individuals build new skills and confidence as valued members of the workforce.

Inclusion doesn’t happen by accident. It takes intentional commitment. When people with IDD are given the chance to work, grow, and succeed, our entire community shines a little brighter.

A young girl with Down syndrome stands holding a bouquet of flowers in front of a colorful celebration backdrop with pink and gold balloons, metallic streamers, a horse mascot, and large gold “25” balloons. She wears a bright coral dress and poses with one hand on her hip.

Why the Department of Education Matters for Students With Disabilities

/in /by The Arc

For families of students with disabilities, it can be challenging to make sure their children get the support they need at school. Parents may spend countless hours navigating evaluations, attending meetings, following up on services, and advocating for their children’s rights.

When a school doesn’t follow the law, families need a clear path to get help. The U.S. Department of Education has long played an important role in that process by helping to oversee federal laws and programs that protect the rights of students with disabilities.

  • The Department’s Office of Special Education and Rehabilitative Services distributes federal special education funding, provides guidance to states and schools, supports teacher training, funds research on effective instruction, and helps ensure students receive the services they are legally entitled to receive.
  • The Department’s Office for Civil Rights investigates discrimination in schools, including disability discrimination involving accommodations, accessibility, harassment, restraint and seclusion, and discriminatory discipline.

Changes to how the federal government carries out this work could make it harder for families to know where to turn when they need help.

Families Rely on Special Education Protections

A young girl with Down syndrome stands holding a bouquet of flowers in front of a colorful celebration backdrop with pink and gold balloons, metallic streamers, a horse mascot, and large gold “25” balloons. She wears a bright coral dress and poses with one hand on her hip.Families like Betsy and Katie’s know firsthand how important federal protections are for students with disabilities. Both have spent years advocating for their children’s educational rights and making sure their children get the support they need to succeed in school.

Betsy’s daughter, Kayleigh, was blocked from attending her local public elementary school in kindergarten. After years of advocacy, Kayleigh is now thriving in general education with supports.

Betsy shared:

“Ever since our daughter was blocked from attending her local public elementary school in kindergarten, we have fought hard for her access to education, with the essential backstop of the Department of Education. Now, she’s thriving in general education with supports. We can’t afford more barriers or more agencies to navigate.”

A family of seven poses together outdoors in a wooded area. Two adults stand with five boys of different ages, smiling at the camera. One boy wears glasses, and the group is dressed in sweaters, vests, and jeans.Katie is the parent of three children with disabilities who rely on special education services, accommodations, therapies, and supports to succeed in school. She knows how difficult it can be for families when schools don’t follow the law:

“My children have different disabilities and different needs, but each of them depends on the protections provided by federal disability laws. We have spent countless hours advocating for their educational rights, and we know how difficult it can be when schools do not follow the law. Families should not have to guess which federal agency is responsible for protecting their child’s rights.”

Like many parents, Katie has worked hard to ensure her children receive the services they need and are entitled to under the law.

“Every day a child goes without the supports they need is a day of learning that cannot be replaced. My children are students first, not patients or cases to be managed. Their education, civil rights, and futures belong in the Department of Education. Families need a system that makes it easier, not harder, to ensure their children receive a free and appropriate public education.”

Take Action To Help Protect a Promise

A young girl wearing a backpack climbs the steps of a yellow school bus. Another child is ahead of her, and the bus driver is seated at the front.Betsy and Katie’s stories remind us why strong federal protections matter. Special education is not about paperwork or bureaucracy. It’s about ensuring students with disabilities get the supports, opportunities, and protections they need to learn alongside their peers and reach their full potential. And families need a clear path to get help when those rights are not respected.

Take Action Today: Tell Congress to oppose moving special education and civil rights offices out of the Department of Education and protect the supports that students and families rely on every day.

 

man with a disabilities shops for fresh produce in a grocery store, holding leafy greens in one hand and a plastic produce bag in the other. Text in the lower left reads, “What do Medicaid and SNAP cuts look like in real life?”

Medicaid and SNAP Cuts: What’s Happening and What You Can Do

/in , /by The Arc

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.