A young man with autism standing in front of trees wearing an orange shirt that says "Disability Rights Are Human Rights"

The ADA at 35: A Legacy Worth Celebrating and Defending

/in , /by Jackie Dilworth

Statement from Katy Neas, CEO of The Arc of the United States on the 35th Anniversary of the Americans with Disabilities Act

The Americans with Disabilities Act reshaped this country for the better. For the first time, people with disabilities had legal protections against discrimination and exclusion. It created a framework for access and sent a clear message: disabled people belong in every part of community life.

I was a young Senate staffer in 1990 and had the opportunity to work on the ADA. I’ve spent the last 35 years working to uphold its promise. And I’ve never seen a more urgent moment than this one.

In the same month we mark this milestone, the federal government passed a budget that cuts nearly $1 trillion from Medicaid, a program that is the very foundation for inclusion. It helps people live at home, go to school, get basic health care, and contribute to their communities. At the same time, the Department of Education is being dismantled, leading to fewer staff enforcing special education laws. The Department of Energy is eliminating a longstanding rule that ensures new federally funded buildings are physically accessible. And slurs like the R-word are back in mainstream conversation, a huge step backward in basic decency and respect.

These are not isolated developments. Together, they show a national, coordinated pattern of erosion. Protections are being stripped. Services are being cut. And people with disabilities are being pushed back out.

This is exactly what the ADA was meant to prevent. When Congress passed the law in 1990, it found that “discrimination against individuals with disabilities persists in critical areas.” The ADA’s purpose was clear: to provide “a clear and comprehensive national mandate for the elimination of discrimination.” It also set a vision, one that is still relevant today: “equality of opportunity, full participation, independent living, and economic self-sufficiency.”

Yet 35 years later, those goals remain out of reach for far too many. And the very systems meant to protect them are being weakened. It’s no coincidence that disabled people are still fighting for access to education, employment, health care, and opportunity. This world wasn’t built with them in mind—so they’ve had to lead, build, and demand what others take for granted.

So we must ask: Who are we designing our society for? Who do we include, and who do we keep leaving behind? And what are we all missing because of it?

When people with disabilities are not at the table, we lose out on leadership, insight, and solutions. Inclusion is how we build stronger schools, smarter policy, more responsive workplaces, and communities that work for everyone.

The ADA was never the finish line; it was the floor. And right now, that foundation is being weakened by budget cuts, deregulation, stigma, and silence. It’s our job to bring it to life in ways that include everyone.

The Arc and our nearly 600 chapters nationwide are working every day to defend the ADA and build the future it promised. We are fighting for civil rights, community services, inclusive schools, access to health care, and respect. We were there when the ADA was written, advocating side-by-side with self-advocates and families to demand equal rights. And we’ve been there every step of the way since, holding the line, advancing progress, and insisting that the law’s promise becomes real in people’s lives.

Disability is a natural and valuable part of human diversity. It is also the one group any of us can join at any time. That means this fight is not just about disabled people, it is about all of us.

We cannot afford to turn away from these threats. A society that excludes people with disabilities will eventually exclude many more. Inclusion is one of the clearest ways we show who matters in our society. Let’s make sure our actions match our values.

A woman holding a sign that says "I am Medicaid. Don't cut me!" while standing in front of the U.S. Capitol in Washington, DC

An Important Update on the Medicaid Fight

/in /by Jackie Dilworth

The Senate just passed the budget bill, and it’s bad. The bill includes:

  • Nearly $1 trillion in Medicaid cuts. That’s about 20% of the federal Medicaid budget. It would cause nearly 17 million people to lose coverage.
  • Nearly $200 billion in cuts to SNAP. Less food assistance means more people will go hungry, including millions of kids.
  • A new private school voucher program that redirects public education funding to private schools. This will make it even harder for children with disabilities to access essential special education services.

Take action now to help us protect the very foundation of care and services!

What’s next? The Senate and the House must agree on a final bill to send to the President for his signature.

“This isn’t over yet, but this is serious, and we need your help,” said Katy Neas, CEO of The Arc of the United States. “With your calls, emails, and texts, we can still reach the hearts and minds of members of Congress on what these cuts will mean for people with disabilities and their families.”

We must stop these devastating cuts before it’s too late!

A picture of a mom and her son with IDD

Medicaid Expansion Saved Their Lives, Now Congress Wants to Cut It

/in /by Jackie Dilworth

For millions of people with disabilities and their families, Medicaid isn’t optional. It’s the glue holding everything together. It’s the health care and therapies that help children grow. The prescriptions that manage chronic conditions. The daily support that helps adults with disabilities get out of bed, work, and participate in their communities. The safety net that allows caregivers to keep going day after day.

But now, Medicaid expansion, a part of the Medicaid program that offers insurance coverage for certain people, including people with intellectual and developmental disabilities, is under threat. A federal budget bill moving through Congress proposes nearly $800 billion in Medicaid cuts, with Medicaid expansion directly in the crosshairs.

What Is Medicaid Expansion and Why Does It Matter?

Medicaid expansion, introduced under the Affordable Care Act (ACA), gave states the option to extend coverage to more low-income adults, including people with disabilities, chronic health conditions, and caregivers who had long fallen through the cracks. Many of these people have very low incomes but make just enough to be outside of the Medicaid income requirements. Others have developmental disabilities that do not meet Medicaid’s disability-specific requirements. In the 41 states (including Washington, DC) that adopted it, Medicaid expansion opened the door to health care for millions who had nowhere else to turn.

Who Benefits From Medicaid Expansion?

Some lawmakers claim Medicaid cuts won’t hurt people with disabilities. But these real people share how Medicaid expansion has impacted their lives.

Eri From Massachusetts
A mom and daughter with disabilities“My mother, an early childhood educator who worked with kids with developmental disabilities, died in 2012 because she couldn’t afford her asthma inhalers. By 2014, I was a teenager experiencing homelessness after losing my only caregiver. I had asthma, a severe mood disorder, and undiagnosed autism and ADHD, but I couldn’t afford health care or medication. Once Medicaid expansion happened, everything changed. I was finally able to receive care, go to college, and rebuild my life. Today, I’m employed, commercially insured, and still receive some Medicaid as a working adult with disabilities. I lost my mom before she could be helped, but expansion gave me a second chance. I’m living proof that it works.”

Monika From California
“I’ve never had a job that offered health insurance. And I never earned enough to pay for the high cost of insurance coverage or deductibles. Then Medicaid expansion came, and I finally got answers: my fatigue and severe joint pain were untreated lupus and rheumatoid arthritis. Now I get the care I need, and can keep caring for my dad, who has advanced Alzheimer’s and a brain tumor. My life and my family’s literally depend on Medicaid.”

What Happens If Congress Cuts Medicaid Expansion?

If Congress moves forward with these cuts, millions will lose access to care. Medicaid expansion has helped people:

  • Get diagnosed and treated
  • Access therapies that support their development
  • Learn, work, and contribute to their communities
  • Live safely at home instead of being institutionalized

Without it, we’ll see more uninsured people and more families pushed to the brink. And the people hit hardest? People with disabilities, caregivers, and low-income adults who are already navigating the most.

Is Medicaid Popular?

Yes, and public support is growing. New polling shows that 83% of Americans have a favorable view of Medicaid, up from 77% just months ago. That support only grows when people understand what’s at stake.

Medicaid Is Not a Handout. It’s a Lifeline.

When lawmakers say people with disabilities won’t be affected, they’re ignoring real people like Eri and Monika. People whose lives and futures depend on Medicaid expansion.

Their stories aren’t the exception. They’re reality.

We can’t afford to go backward—not now, not ever. Too much is on the line.

Read. Share. Take action before it’s too late. Urge Congress to protect Medicaid now.

Three people stand on a grassy area in front of the U.S. Capitol holding bright orange signs that say “Protect Medicaid.”

The Truth About Medicaid Expansion and Disability Services

/in , /by The Arc

In recent debates over Medicaid’s future, some have suggested that extending coverage to low-income adults through Medicaid expansion has diverted resources away from people with intellectual and developmental disabilities (IDD) and undermined the program’s original purpose.

That claim is both misleading and dangerous. It risks turning vulnerable communities against one another and distracting from the real threats facing Medicaid that come from significant cuts.

Medicaid Expansion and HCBS Waiting Lists Are Not Connected

The argument that Medicaid expansion led to longer waiting lists for people with disabilities who need home and community-based services (HCBS) is often repeated but easily disproven.

There is no correlation between whether a state expanded Medicaid and whether its HCBS waiting list grew. 10 of the 11 states without HCBS waiting lists are expansion states, and the two states with the largest waiting lists—Texas and Florida—are non-expansion states. In fact, Texas’ waiting list alone represents nearly half of the nation’s total.

Because HCBS programs are optional services within Medicaid, states control their own waiver programs, including how many people are served and how much funding is allocated. Thanks to growing support for HCBS, Medicaid has made significant progress in shifting long-term care away from institutions and into the community. In 2022, 65% of long-term services and supports (LTSS) spending went to HCBS, compared to only 18% in 1995.

Blaming Medicaid expansion for state-level decisions about HCBS funding misrepresents how the program works and distracts from the need for stronger investments in these essential services.

Cutting Medicaid Funding Won’t Help People With Disabilities

Reducing or eliminating federal funding for the Medicaid expansion population would not free up money for people with IDD; it just means less funding overall for the entire program.

Medicaid is a vital part of our social safety net, which ensures that everyone who needs care can get it, whether they are managing a chronic condition, caring for a child with disabilities, or working a low-wage job without access to employer-provided coverage.

We should be fighting to expand services and reduce waiting lists, not blaming other groups of enrollees for long-standing systemic challenges.

A Medicaid Program That Works for Everyone Is the Goal

The truth is Medicaid expansion has strengthened the program overall by bringing in new resources to support people and expanding access to care for millions of people, including many with IDD and care workers. Many people with serious health conditions and disabilities do not meet the strict disability eligibility standards necessary to access Medicaid through the Supplemental Security Income program (SSI) or do not want to impoverish themselves to meet the SSI income and asset limits.

Medicaid expansion has helped many people with disabilities access critically needed health care. What endangers HCBS and other critical supports for people with disabilities are proposals to slash federal support for Medicaid under the pretext of targeting waste, fraud, and abuse within the program.

We should be investing in HCBS, increasing pay for caregivers, and expanding access to LTSS, not rolling back coverage or undermining Medicaid’s foundation.

Q&A: What’s Going on in Washington, DC, With Medicaid Cuts?

/in , /by The Arc

Medicaid is at the center of a major budget debate in Washington, DC. But what does this mean for people who rely on Medicaid? And how will proposed changes, including work requirements and spending cuts, impact health care for people with disabilities, seniors, and low-income families?

In this Q&A, we break down what’s happening, what’s at stake, and what comes next.

Q: Didn’t the President say he does not want cuts to Medicaid?

A: Yes, the President has stated on several occasions that he opposes cuts to Medicaid. Many members of Congress also state opposition to cutting Medicaid. However, the budget resolution that passed the House on February 25, 2025, which the President also said he supports, lays the groundwork for over $880 billion in cuts to Medicaid and other low-income programs over the next 10 years. Think of it as the first inning in a long baseball game.

Watch our video for a plain language explanation.

Q: Some members of Congress say Medicaid is not mentioned in the House bill.

A: Correct. Medicaid is not mentioned in the budget resolution. However, the bill directs a specific committee—the House Energy and Commerce Committee—to find $880 billion in “savings” (over 10 years).

There is no way to achieve such “savings” or cuts without directly impacting Medicaid health care and critical services for people with disabilities, seniors, and low-income families. On March 5, the non-partisan Congressional Budget Office (CBO) published a letter detailing what programs could be cut to meet the $880 billion target.

The CBO letter confirms early expectations, finding that nearly all of the cuts could only come from Medicaid and the Children’s Health Insurance Program.

See KFF analysis.

Q: Some members of Congress say they are only targeting “waste, fraud, and abuse” in Medicaid. Is that true?

A: Everyone wants to eliminate waste, fraud, and abuse. Members of Congress are saying their goal is to get rid of waste, fraud, and abuse and that all the cuts can be financed by stopping waste, fraud, and abuse. We are skeptical.

Currently, the federal government and state governments have programs in place to prevent and detect waste, fraud, and abuse. In 2023, the Department of Health and Human Services recovered $1.8 billion in fraud. These efforts are essential, but in no way are significant to support $880 billion in cuts over 10 years. Moreover, the only way to get to this magnitude of cuts is to cut health care and services that people with disabilities, children, and adults rely on. People will be hurt by these deep cuts.

Q: Will work requirements impact people with disabilities on Medicaid?

A: Yes, despite claims that beneficiaries with disabilities won’t be affected by work requirements for Medicaid, research shows that work requirements don’t work—they don’t lead to higher employment rates and cause people to lose access to health care. These requirements, including increased paperwork, doctor’s signoffs, and other bureaucratic burdens, disproportionately impact people with disabilities who may face barriers to employment. They create real administrative waste. They achieve savings in the Medicaid program by reducing the number of people eligible for Medicaid, but they may raise states’ costs in administering the new requirements.

Watch our short video on work requirements.

Q: Some members of Congress say they want to restore the Medicaid program to its “original purpose.”

A: This refers to the people who were eligible before the Medicaid expansion (enacted in 2010), which created a new eligibility category for low-income adults to qualify for coverage. This expansion is especially beneficial for adults who might not qualify under traditional disability categories because their disability may not qualify them for coverage, or they may have slightly higher income.

Read more by KFF.

Q. What are the next steps in this process, and when can we expect them to happen?

A: The next step is for the Senate to take up the House-passed budget as soon as April. Once the House and Senate can agree on a unified budget resolution, the House Energy and Commerce and Senate Finance committees will make changes to programs to come in line with the budget targets. During this step we will see the proposed changes in the law that will result in the savings required by the Budget Resolution. The House and Senate will then have to pass the final reconciliation bills and be signed by the President.

Q: How is The Arc responding to these proposed cuts?

A: The Arc is committed to advocating for people with disabilities by highlighting the consequences of these policies. We are actively engaging with Congress and the Administration to protect Medicaid so that health care and disability services are not taken away.

Watch our CEO, Katy Neas, on CNN discussing Medicaid cuts.

For more information about the impact of cuts on states, see the following resources:

Ready to take action?

Send a message to Congress now and tell them to protect Medicaid for people with disabilities and their families!

Picture of the U.S. Capitol Building in Washington, DC

What’s Happening at the Social Security Administration? Here’s What People With Disabilities Need to Know.

/in , /by Jackie Dilworth

Millions of people with disabilities rely on Social Security benefits to survive. Recent changes at the Social Security Administration (SSA) may make accessing these benefits harder than ever. Long wait times, office closures and staff cuts, and policy rollbacks are already raising concerns and exacerbating customer service issues. Here’s what you need to know.

What Is Social Security and Why Does It Matter?

Social Security provides benefits to over 73 million people, including over 11 million people with disabilities. It offers financial protection for individuals and their families when a worker retires or dies, or when someone has a qualifying disability. Many people with disabilities depend solely on their Social Security or Supplemental Security Income (SSI) benefits and related health coverage for their basic survival.

  • Supplemental Security Income (SSI) helps people with disabilities and older adults who have little or no income and financial resources. SSI provides modest monthly benefits to help with basic needs like food, clothing, and shelter, averaging around $714 per month. In most states, recipients automatically qualify for Medicaid, which provides essential health care.
  • Social Security Disability Insurance (SSDI) provides benefits to workers with qualifying disabilities and their families. It also provides access to health insurance coverage from Medicare. A related benefit called the “Disabled Adult Child” or DAC benefit provides income support and Medicare coverage to adults whose disabilities began before they were 22 years old.

A Growing Crisis: Long Wait Times and Delays

Even before recent changes, SSA was already struggling with long wait times and backlogs processing applications for disability benefits. Every year, thousands of people die while waiting for a decision on their disability benefit application. In April 2025:

  • Over 1 million initial disability claims are pending—nearly double the number in 2019.
  • The average wait time for an initial disability decision is 232 days (nearly 8 months).
  • If an applicant is denied and requests a hearing, they can wait another 450 days (15 months)—meaning some people wait over two years for a decision.

These delays have real consequences. People with disabilities who can’t access the benefits they need risk financial hardship, homelessness, and worsening health conditions. In 2023, 30,000 people died while waiting to access Social Security benefits.

Staffing Cuts and Office Closures

In 2025, SSA has announced a dramatic reduction in staff and offices, including:

  • Plans to cut 7,000 employees (over 12% of the agency’s workforce).
  • Closure of 60% of SSA’s 10 regional offices, reducing key staff that help resolve problems with peoples’ benefits.
  • Closure of SSA’s Office of Civil Rights and Equal Opportunity, which handled reasonable accommodation requests and managed the agency’s civil rights complaints, including public complaints of discrimination on the basis of disability. This office’s statutory responsibilities have reportedly been divided and moved to other divisions within SSA.

Why does this matter? SSA workers process disability applications, answer calls, and help people navigate complex benefit rules. With fewer staff and the consolidations of regional offices, wait times could get even worse. The loss of key staff also raises concerns about SSA’s ability to modernize, maintain, and improve essential services, further limiting accessibility for beneficiaries. Modernizing SSA’s operations requires long-term investments in systems and processes that are being undercut by these changes.

New Barriers and Policy Rollbacks

New barriers and policies that harm beneficiaries are also being implemented, including:

  • Overpayment Collections: SSA can now withhold 50% of a person’s monthly SSDI check if they were overpaid, even if the overpayment was not their fault. This means someone’s SSDI benefit could suddenly be cut in half—potentially leaving them unable to make rent or buy food while the overpayment is collected or they request a waiver or alternate repayment plan. We spoke to KFF Health News about this issue in late 2023, and advocated for the pro-beneficiary policies that are now being rolled back.
    • SSI Exemption: SSI beneficiaries are exempt from this policy change and still have a 10% default withholding rate.
  • New Identity Verification Requirements: Starting April 14, 2025, SSA is implementing new measures to verify the identity of millions of people applying for benefits and changing their direct deposit information. Those who are unable to complete these processes online will be required to go to an SSA field office to verify their identity in-person.
    • Only applies to applications and direct deposit changes: These in-person requirements only apply in two situations: 1. When someone applies for benefits over the phone and their application is flagged as potentially fraudulent; or 2. When a beneficiary is not able to use online services to change the bank account that their benefits are deposited into. SSA is no longer allowing beneficiaries to change their direct deposit information by phone. Beneficiaries will now be required to use a online or in-person services to change their direct deposit information. Please note: You do not need to contact SSA or go to a field office to continue your monthly benefits at your current bank. More information is available on the SSA website.
    • These requirements will be especially burdensome for older adults, individuals who do not have reliable internet access or a smartphone, those that require assistance using online services, and those for whom online SSA services are not available. For example, there is no online application for Survivors’ Benefits and children under the age of 18 cannot have online Social Security accounts.
    • This will also significantly disadvantage beneficiaries living in rural communities who must travel long distances to reach in-person services.
  • Disability Hearings Impacted: SSA is closing some hearings rooms and has reportedly canceled some disability hearings because they could not use agency credit cards to pay for sign language interpreters or translators. This could create even more delays for applicants.

How This Affects People With Disabilities

To be clear, as of April 2, 2025, Congress and the Administration have not directly cut the benefit amounts that current Social Security recipients get each month, and they have promised not to cut Social Security benefits.

The ongoing disruption at the SSA will likely impact access to benefits, which can amount to an indirect benefit cut for both disability applicants and current beneficiaries experiencing problems with their benefits. It can also create an environment in which errors and benefit delivery interruptions may be more likely to occur. All of these changes have serious consequences for people with disabilities in the short-term and long-term:

  • Application Delays Reduce Benefits: Many Social Security benefits are calculated based on the date people apply. Delays accessing these vital benefits can result in lower overall benefit amounts for Social Security disability beneficiaries.
  • Benefit Interruptions: Disability beneficiaries already experience interruptions in their benefits for many different reasons—especially if they’re working. These changes at SSA could make benefit interruptions more frequent, longer, and more difficult to resolve.
  • Longer Wait Times for Benefits: These changes at SSA will likely increase the backlog of people waiting for a decision on their disability application. We are concerned that these longer wait times mean more disability applicants will die before they can get the Social Security benefits they need and deserve.
  • Harder to Get Help from SSA: Cuts to staff and resources make it more difficult to get assistance from SSA on the phone, online, and in-person. We have heard reports of 5-hour-long hold times for SSA’s 1-800 Helpline, brief outages of the ‘my Social Security’ online portal, temporary glitches displaying incorrect information about beneficiary payment status on online accounts, and month-long wait times to get an in-person appointment at an SSA field office.

Any changes to how SSA operates can be incredibly stressful for people with disabilities who need Social Security benefits to meet daily needs. For this reason, it is imperative that SSA be transparent about the changes they are making and the rationale for these changes. False claims about Social Security fraud also undermine trust in the system.

What Can You Do?

If you or a loved one relies on Social Security benefits, here’s some information to keep in mind. (Please note that this is general information, not legal advice. Due to the complexity of the system, the assistance of a lawyer can be helpful for resolving problems with your application or benefits.)

How to Request Casework Assistance from Your Member of Congress:

  • If you need help resolving an issue with your Social Security benefits or dealing with SSA, you can get help from caseworkers in your Member of Congress’s office.
  • Members of Congress cannot override decisions made by a federal agency, but they can often intervene on a person’s behalf to answer questions, find solutions, or help ensure you receive a fair and timely response to your problem.
  • Different offices have different ways of handling casework, so it’s helpful to start by calling your Member of Congress and saying, “I am a constituent requesting casework assistance with a Social Security benefit. What is the best way for me to submit this request?” They may give you a phone number to call, an email address to contact, or refer you to a form on their website to start the intake process. Find your representative here.
  • Be prepared to sign privacy release forms allowing staff to view personal information like your Social Security Number in order for them to assign a caseworker to handle your case. They will also ask for copies of documents relevant to the issue they are helping you with. Learn more about the casework process.

Other Practical Tips

  • Keep Records: Getting and maintaining Social Security disability benefits requires providing records related to your educational, medical, financial, family, and work history to SSA. In recent weeks, outages and other glitches impacting online ‘my Social Security’ accounts have also become more frequent.
    • Calls to SSA: When you call the SSA Helpline (1-800-772-1213), keep a record of the date, name of person you spoke to, what you asked, and what they told you. If the information you received does not make sense, sounds incorrect, or is not helpful, you can ask to speak with a supervisor.
    • Mail from SSA: When you get mail from SSA, promptly open, read, and keep a copy of it. Sometimes mail from SSA includes instructions and a deadline for something you need to do.
    • Documents You Submit to SSA: Make copies of all documents you give to SSA. Keep copies of the forms you fill out, other materials, and the date you sent them to SSA.
    • Your Social Security Record: If you are more than 18 years old, you can access your Social Security records online through a ‘my Social Security’ account. Download and keep copies of your records from the site including:
      • Your Statement
      • Your Benefit Verification Letter
      • Your Tax Form from SSA
      • Your Earnings Record
      • Your Benefits & Payments, which shows the date and amount of your next payment.
      • Screenshots of any error messages or information pertaining to your payment status that appear to be incorrect.
  • Be Proactive:
    • Avoiding Overpayments: Try to prevent problems with benefits before they arise by reporting any changes that could impact your benefits to SSA as soon as possible. Examples of things to report include changes to your contact information, address, disability/health condition, marital status, parental status, employment status, income, who you live with, and financial resources over $2,000 for SSI beneficiaries.
    • Setting Up a ‘my Social Security’ Account: If you are an adult receiving Social Security or SSI benefits and do not already have a ‘my Social Security’ account, it’s a good idea to set one up so it is available whenever you need it. SSA is increasingly encouraging people to use online services. Setting up an account will help you get easier access to information about your benefits.
  • Beware of Scammers: We are concerned that the rapid rollout of the digital identity verification tool could provide an opportunity for scammers to impersonate the SSA and harm beneficiaries. Remember, SSA will never text, message you on social media, or email you to ask for money or personal information. Learn more about common Social Security scams.
  • Know Your Rights: Information on your rights as a beneficiary or applicant are available at this page for SSDI and this page for SSI. If you receive an overpayment notice, you can appeal, request a waiver, or request a different repayment plan.
  • You Are Not Alone: Social Security disability beneficiaries can do everything right and still run into problems due to mistakes from SSA or other complexities in the system. It can be discouraging, frustrating, and anxiety-inducing. Please know you are not alone. The problems at SSA are bigger than any one person– that’s why we’re working together to make the system better for everyone.
  • Share Your Story: Personal stories help highlight the real impact of these changes. If you’ve been affected, consider sharing your experience with advocacy groups like The Arc.

The Arc Is Fighting for You

At The Arc, we are committed to advocating for policies that strengthen—not weaken—Social Security. We are working with Congress and disability rights organizations to push for oversight, protect Social Security programs, prevent harmful cuts, and improve access for those who need it most. We also continue to advocate for an increase in the SSI asset limit, which for nearly 40 years has been stuck at just $2,000 for individuals and $3,000 for married couples—far too low to get by in today’s economy.

The Arc has been a champion of Social Security for half a century. We played a key role in the creation of the Supplemental Security Income program to help build financial stability for people with disabilities. Today, we serve as a Co-Chair on the Consortium for Constituents with Disabilities’ Social Security Task Force, working to protect and update these vital programs.

Logan, a young, disabled man, is sitting outdoors in a wheelchair. There's a cow standing next to him. Logan has a big smile on his face.

Logan Dreams of Starting His Business, But the SSI Asset Limit Holds Him Back

/in /by The Arc

“My entire life, I have been proving people wrong about what I can do.”

Logan, a young, disabled man, is sitting outdoors in a wheelchair. There's a cow standing next to him. Logan has a big smile on his face.Born at 27 weeks and just over 2 pounds, Logan was small enough to fit in the palm of his mom’s hands. He spent a month in the neonatal intensive care unit on heart monitors and chest tubes, and his lungs collapsed twice. The doctors told his mom that Logan would never talk or speak and that he would be a “vegetable.” But they were wrong.

With the support of his family, friends, and various aides, Logan grew to be a happy and healthy kid, and he discovered his life’s work.

Logan’s passion in life is livestock, and he’s ready to open his business.

In middle and high school, Logan joined the Future Farmers of America (FFA), a youth organization that prepares its members for leadership, growth, and career success through agricultural education. With the support of his teachers, who fostered his passion in this area and believed in his skills, he not only achieved his state level degrees but also his American degree, the highest FFA degree available. Now, Logan wants to start his own cattle company and knows that nothing is going to stop him from being successful if he can get started. He dreams of having his name on everything in his business—from the truck to the stock.

“My family raised cows growing up, and I got hit by the bug to learn more. My senior year, I showed and sold my first steer. I knew immediately that cattle was what I was meant to do. I want to give back to those who gave everything to me and be someone kids in the industry can look up to.”

But the Supplemental Security Income (SSI) asset limit is limiting Logan and stopping him from pursuing his dreams.

SSI provides critical support to Logan and nearly 8 million other people with disabilities and older Americans. Logan uses the money he gets from SSI to pay his rent and food. But most importantly, SSI qualifies Logan to use Medicaid to help pay for his health care needs. Without it, his family would struggle to pay for the things he needs for his daily life.

Right now, outdated rules stop people who get SSI from being able to save money. Unmarried people like Logan who get SSI can only have $2,000 in assets, which includes money in bank accounts, retirement accounts, and other savings. Married people can only have $3,000 in assets.

Logan, a young man in a wheelchair, is reaching his arm out to touch a cow that's standing next to him.The current SSI asset limit means that Logan can’t open his own cattle business, since even owning one steer would put him over the limit.

“I want to do what I want to do and how I want to do it…. I want to make a living. I also have other dreams – to get married and have kids, to have a life like everyone else has.”

At 25, Logan’s not done—he’s just getting started to prove everyone wrong. But he needs Congress’ help to make his next dream possible by passing laws to increase the asset limit.

“Congress hasn’t done anything in 40 years to raise this limit. It’s time to take care of business and get this change done. I’ll keep going, even if I have to call 125 people. The words ‘I can’t’ are not in my vocabulary.”

Congress is considering bills that would raise the SSI asset limit. It would raise the limit from $2,000 to $10,000 for single people like Logan, and it would increase the limit from $3,000 to $20,000 for married couples who get SSI.

For Logan, this change would be huge, as it would allow him to start his business.

Support Logan’s dream and the dreams of other entrepreneurs with disabilities across the country. Contact your member of Congress to raise the SSI asset limit.

A head shot of a young woman with Down syndrome, smiling.

Equal Lives, Equal Rights: Challenging Organ Transplant Discrimination Against People With Disabilities

/in , , /by The Arc

Over 100,000 individuals in the United States are waiting for an organ transplant, including many people with intellectual and developmental disabilities (IDD). Thousands of people die each year waiting for a transplant. Unfortunately, many people with IDD get rejected at such high rates that it has become an ethical medical issue.1 For example, a study showed that individuals with IDD were 62% less likely to receive a kidney transplant.2

The National Council on Disability released a report about organ transplant discrimination. The report shared beliefs that some medical professionals had about people with disabilities. Some doctors believe that those with IDD would not be able to comply with postoperative care. Other doctors believe that disability impacts the likelihood of having a successful transplant.3 However, research has shown that these are myths. Many studies show that transplant outcomes for people with disabilities are not worse than those who do not have disabilities.4

Thankfully, some professionals understand that having a disability does not mean a person should be less eligible for an organ transplant. Thanks to organ donations, people like Charlotte Woodward can survive and live fulfilling lives!

A head shot of a young woman with Down syndrome, smiling.Charlotte is an advocate with Down syndrome who was born with a congenital heart defect. She had to undergo multiple surgeries as a child and finally received a heart transplant in 2012. The journey to get her heart transplant had its challenges, but she used her experience to fight to make sure everyone had access to organ transplants. To make this a reality, Charlotte spoke with policymakers about creating a bill about organ transplant discrimination. Members of Congress created the Charlotte Woodward Organ Transplant Discrimination Prevention Act. This bill would prohibit health care entities from denying a person access to a transplant due to their disability.

For decades, The Arc has supported legislation, regulations, and policies that address organ transplant discrimination. Charlotte’s bill’s introduction in Congress was successful. The Arc will continue to advocate that organ transplant discrimination is wrong and needs to end.

Charlotte is also a member of The Arc’s National Council of Self-Advocates. Charlotte offers this advice for other self-advocates who are tirelessly working to advance legislation: “Never give up. If you don’t speak up for yourself and don’t demand what you want and need, you’re not going to get it.”

If you are a self-advocate looking for effective advocacy tips, join our National Council of Self-Advocates.

 

 

 

1 https://www.washingtonpost.com/national/health-science/people-with-autism-intellectual-disabilities-fight-bias-in-transplants/2017/03/04/756ff5b8-feb2-11e6-8f41-ea6ed597e4ca_story.html

2 https://jamanetwork.com/journals/jamasurgery/fullarticle/2801511

3 https://www.ncd.gov/assets/uploads/reports/2019/ncd_organ_transplant_508.pdf

4 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9932938/

Red, white, and blue stickers that say "I Voted."

This Election Year, Know Your Voting Rights!

/in /by The Arc

Voting is an essential part of our democracy and our right as citizens.

Too often, people with disabilities struggle to be able to vote.

Here are some (but not all) of the reasons that people may struggle:

  • Polling places may not have accessible entrances, spaces, machines, or ballots.
  • Poll workers and election officials may not have had adequate training on how to support or communicate with people with disabilities, especially voters who also are members of other groups that have been treated unfairly in the past.
  • Poll workers may assume a person cannot vote because they have a disability or are under guardianship.
  • Voter suppression laws may have restricted the ways that voters with disabilities can receive assistance in voting or made it harder to vote by mail.

People with disabilities who have guardians face barriers to voting that are out of line with federal law.

Nationwide, thousands of people with disabilities have guardians.

Guardianship occurs when a court determines a person is unable to make some or all of their own decisions. They appoint a guardian to make certain decisions for the person.

Right now, some states have passed laws that ban people with guardians from voting or make people work harder to show that they can vote.

And many people believe or have heard wrong information from poll workers, family members, or direct care workers that people with disabilities cannot vote if they have a guardian.

Recently, the U.S. Department of Justice (DOJ) clarified voting rights for everyone and said people who have guardians can vote.

Specifically, the DOJ shared states cannot:

  • Ban people from voting or registering to vote just because they have a guardian or conservator.
  • Make rules that make voters work harder to show they are eligible to vote, like through petitioning the court to vote or taking a competency test.
  • Ban voters with disabilities from receiving the help they need to vote.

The DOJ also shared more about the help voters can get throughout the voting process.

  • Voters can get help requesting, completing, or returning a ballot.
  • They can get help when they vote in person, absentee, or by mail-in ballot.
  • They must be able to get help from someone they choose – not just from an election worker.
  • Voters with disabilities who need help putting their ballot in a mailbox or drop box must be able to get help from someone they choose.

What Can I Do?

  • Know your voting rights and make sure that you are ready to vote. Visit thearc.org/vote to learn more.
  • Speak with your guardian or the person you act as guardian for (if you have one) about this news and how it impacts you. Learn more about voting rights under guardianship.
  • Share this news with others. Everyone should know what the right rules are.
  • Speak up if your rights are denied or if you see someone else’s rights denied! Contact your local protection and advocacy organization. They provide legal aid to people with disabilities. They can help you make a complaint to your election office or figure out your next steps.

 

A group of people in front of the Capitol in Washington, DC. They are all wearing orange T-shirts with white letters that say "Disability Rights Are Human Rights."

Tips to Advocate During August Congressional Recess

/in /by The Arc

A group of people in front of the Capitol in Washington, DC. They are all wearing orange T-shirts with white letters that say "Disability Rights Are Human Rights."For some, August can be a time for camping trips, beach days, and other fun summer activities. But for members of Congress, August signals the start of Congressional Recess. During August recess, U.S. senators and representatives leave Washington, DC, and travel to their home states and districts to begin a fast-paced schedule of constituent meetings, town halls, and other community events.

Last year, many of you answered the call to engage with your members of Congress by sharing your stories. We are so grateful to everyone who wrote, called, tweeted, and met with their representatives. Because of you, the concerns of the disability community were heard loudly in the halls of Congress.

With August nearing, it’s time to do what you do best and advocate for disability rights again!

August recess is your moment to provide members of Congress with a glimpse into your life and the issues that matter to you. With your stories echoing in their minds, these decision-makers can return to Washington ready to legislate meaningful change for the disability community.

To continue to build on the impact you have made in years past, we have prepared a few tips to keep in mind as you navigate this August Congressional Recess:

  • Follow us on Facebook, X/Twitter, Instagram, and LinkedIn. Throughout August, we will be sharing actions you can take to advocate with your members of Congress.
  • Visit our Action Center to find a few easy ways to take action. Tell your members of Congress to invest in home and community-based services and to update the Supplemental Security Income program for the first time in over 30 years.
  • Visit your U.S. senators and representatives. You can look them up using our “Find your elected officials” tool. If you met with one of them during a previous August recess, make another appointment and strengthen your connection. And don’t forget to thank them for any past legislative actions that advanced disability rights!
  • Follow your elected officials on social media. Learn what legislation your representatives are currently working on by finding their X/Twitter handles and following them.
  • Connect with your local or state chapter of The Arc. Find your local chapter and reach out to them to learn about any meetings or other activities you can join.
  • Attend town hall events. Many members of Congress host town hall meetings during the August recess to hear from their constituents. Contact your members of Congress or review their websites to see their town hall schedules.

We’re so proud of the way you have shown your commitment to disability rights over the years—now, let’s build on that success! Connect with your representatives and share how their legislative actions (both past and present) affect your family. Your stories and perspective on important disability policy issues can prepare your legislators to fight for disability rights this year and beyond!