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 100% 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 reduced to $0—leaving them unable to pay 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.

A doctor speaks with a patient in a wheelchair. A nurse is pushing the wheelchair.

Close the Gaps: People With Disabilities Are a Special Medically Underserved Population

/in /by The Arc

People with intellectual and developmental disabilities (IDD) face issues with not having access to the health care they need throughout their lifespan. There are millions of children with IDD across the country. In some states, families wait up to 20 years to get access to behavioral health services. Sadly, people with IDD struggle to get good health care, and many individuals also lack access to dental care. In fact, less than 70% of dentists have treated people with disabilities. Those with IDD are at higher risk for oral diseases due to service gaps, low income, and other factors. This can cause heart problems and worsen health. Additionally, some research shows that adults with IDD may die 24 years earlier than those without IDD.

These disparities have led to a push to classify people with IDD as a special medically underserved population (S-MUP). The HEADs UP Act stresses the need for this formal designation. As an S-MUP, the IDD community would get more attention and resources in health care planning and access. There would be more funding and training for federal health programs, and it would also require investing in medical sub-specialties that support people with IDD. The bill would fund scholarships and loan repayments for providers who care for people with disabilities.

The Arc’s policy team has worked to provide feedback on the bill to uplift the needs of people with IDD. We have worked with coalitions to submit comments to agencies on oral health and health A headshot of Dr. Adiaha Spinks-Franklin, a Black woman wearing a black jacket over a blouse and smiling.care for people with IDD. Achieva, a chapter of The Arc, held a roundtable about the HEADs UP Act. It included medical experts, like Dr. Adiaha Spinks-Franklin, and Congressman Seth Moulton.

Dr. Spinks-Franklin is immediate past-president of the Society for Developmental and Behavioral Pediatrics (SDBP) and one of 758 board-certified developmental-behavioral pediatricians. During an interview with us, she shared, “If we don’t act, we will see a worsening behavioral health crisis. It will cause a huge drop in school attendance, especially for Black, Indigenous, and Brown boys.  But there is hope if we pass this bill. We can increase the number of developmental-behavioral pediatricians. We can address the current behavioral health crisis by providing more funding for providers and resources for people with IDD.”

Dr. Spinks-Franklin leaves us with this: “Residencies should teach that caring for people with disabilities is normal. People should stop viewing disability as something to cure. We should have people trained to take care of all people instead of a subset.”

Make sure your members of Congress know what this bill means to people with IDD. You can take action here.

 

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/

A crowd of graduating students against a black backdrop. They are all raising their right arm and turning the tassels on their caps to the other side.

Unlocking Dreams: The Power of Student Loan Forgiveness for People With Disabilities

/in /by The Arc

Many see college as a path to a better life and unlocking their dreams. But student debt often stops this, especially for people with disabilities. A major reason is due to income. People with disabilities experience poverty more than double the rate of individuals without disabilities.

A study found that nearly 3 in 5 people with disabilities with student loans struggle with food insecurity and paying house or utility bills. Facing these challenges can force borrowers to take additional jobs to pay for debt. It can stop people from buying houses or cars or seeking more education. On average, people with disabilities graduate with $27,490 in student loan debt and many have a debt of over $100,000.

The Arc has been a leader in advocating for changes to the Total and Permanent Disability (TDP) Discharge Program to include automation, simplifying the program, and eliminating the monitoring period. TDP is a program that relieves people who are totally and permanently disabled from repaying certain federal student loans.

The Biden administration has made significant changes to TDP. Now, more than half a million people with disabilities have received student loan forgiveness since 2021.

A woman wearing a graduation cap and gown. One of those people is Renee.

Renee’s dream was to be a nurse. She was excelling in a nursing program and working in an intensive care unit while she finished her degree. Unfortunately, she injured her spine while moving a patient and that started her personal disability journey. Due to this injury, Renee’s nursing education ended. Determined to earn a degree to help others, she returned to school to pursue a bachelor’s degree in human and community services and a master’s degree in social and public policy.

Right before graduating from her master’s program, Renee needed emergency spine surgery. The surgery and recovery made her unable to complete the required internship for her program. Because of this, she couldn’t work in her chosen field.

By this point, Renee was over $100,000 in debt with no way to get a good-paying job in her field. Her family was unable to make the $1,000 monthly student loan payments, and it made it more difficult for them purchase the things they needed for their family. Renee learned about the TPD loan forgiveness opportunity. She applied and she later discovered that her student loans were discharged. Renee stated that this relief was a blessing. Not only were they able to purchase things that their family needed, but it opened doors for her family to buy a home.

Student loan debt is a disability rights issue. The Arc has relentlessly advocated for changes to relieve people with disabilities from student loan debt. Learn more about TDP here.

There is an exam table at a doctor's office in the forefront. In the background is a counter with papers, a sink, medical equipment, and posters hanging on the wall.

“He Isn’t Worth Helping” – Devastating Stories of Medical Ableism

/in , /by The Arc

Our health care system is failing people with intellectual and developmental disabilities (IDD) – and costing them their lives. Their shared experiences are eye-opening and egregious, including doctors outright refusing to provide services, wrongly attributing health issues to their disability, not viewing people with IDD as reliable communicators of their own health issues, making assumptions about quality of life and worthiness, refusing to allow a support person to accompany them, discounting their pain, and more.

People with IDD are being denied life-saving treatments or even routine preventative health care at disproportionately high rates. The research reinforces what we hear every day: people with IDD have poor experiences at hospitals and medical centers, which leads to poorer health outcomes and shorter life expectancies. Explicit bias and discrimination are directly limiting lifespans and causing unconscionable, avoidable suffering. Many of these discriminatory policies and practices were laid bare by the COVID-19 pandemic.

To combat these health inequities, the U.S. Department of Health and Human Services (HHS) is proposing updates to Section 504 of the Rehabilitation Act, landmark legislation prohibiting disability discrimination. Unrevised in 50 years, reforms would forbid medical discrimination against people with disabilities and improve accessibility. These urgent updates are important steps forward for protecting rights and ensuring equitable health care access.

The Arc has been a longtime advocate on this issue, and we jumped at the opportunity to submit comprehensive comments to HHS on these proposed updates. We shared research on the wide-ranging discrimination people with IDD face in health care settings and highlighted the need for reasonable modifications and plain language communications.

Most crucially, we included direct stories of discrimination collected from people with IDD and their loved ones nationwide. Here are a few of their stories.

  • A parent in Washington state has been told by doctors and health care providers that their child with Down syndrome “isn’t worth helping… isn’t worth saving.”
  • A child with autism in New York was denied care from a pediatrician for basic primary care services out of concern that his care needs would “overwhelm” the pediatrician’s practice.
  • When her son with Down syndrome experienced febrile seizures and stopped talking, his parent was told, “He has Down syndrome. What do you expect? They don’t talk.”
  • People with IDD are frequently denied clinically-appropriate treatment that would be offered to a person without IDD. For example, a parent in Connecticut was told by multiple doctors that her 10-year-old son’s chronic joint pain “is part of his disability” or “growing pains” before finally receiving a Lyme disease diagnosis three years later and being told the damage is permanent.
  • A parent in Maryland reported that it took 6 years to find a therapist for her daughter, who has Down syndrome. “[My daughter] is verbal but it is difficult for her to verbalize her feelings… I thought she had been sexually assaulted. I was finally able to get her [help], but it was temporary.”
  • Accessing mental health and dental services are particularly challenging for people with IDD. For example, Michigan parents of a young child with autism who was denied service by a dentist, were “dismissed with a warning not to come back until he no longer expressed the behaviors of an autistic child.”

The stories are innumerable, infuriating, and heartbreaking. But they power our advocacy. We will continue advocating for Section 504 reforms addressing the pervasive and longstanding discrimination that people with IDD experience from medical professionals. Everyone deserves equal access to health care.

By uplifting the voices of people with lived experiences, we’re holding health systems accountable and pushing them to see all patients as equally deserving of quality, individualized care. Join us in speaking out against medical ableism until equity is reality. Health care is a human right that must not be denied for any member of our community.

The US Capitol in Washington, DC

Disability Advocates Urge Support for Emergency Funding Bill to Address Medicaid Care Crisis

/in , , /by The Arc

Washington, DC – Every person deserves the freedom of living in their own homes, being a part of their communities, and choosing how they spend their days. Medicaid’s home and community-based services makes that possible for millions of people with disabilities and older adults, yet chronic underfunding is forcing them into institutions and putting families in crisis. Today, the Home and Community-Based Services (HCBS) Relief Act was introduced by Senator Bob Casey (D-PA), a bill that would provide emergency funding to state Medicaid programs and have a profound impact on disabled and older Americans. The Arc applauds this pressing bill and urges lawmakers to pledge their support for independence and inclusion.

“Marginalized for far too long and facing catastrophic shortages of direct care workers, people with disabilities and their families are desperate for help,” said David Goldfarb, Director of Long-Term Supports and Services Policy at The Arc of the United States. “Without access to basic support for daily living, disabled people are at risk of being confined, isolated, and neglected in institutions or trapped in their homes. This is about the basic human right to live in the community. It’s time that we show people with disabilities that their lives not only matter, but that they are valued members of our society. The HCBS Relief Act would support and strengthen their daily lives, while also improving health, economic stability, and quality of life for their families and direct care workers.”

Millions of people rely on HCBS for daily activities, such as dressing, bathing, meal preparation, taking medication, employment support, mobility assistance, and more. The HCBS Relief Act would provide dedicated Medicaid funds to states for two years to stabilize their HCBS service delivery networks, recruit and retain HCBS direct care workers, and meet the long-term support and service needs of people with disabilities and older adults. The HCBS Access Act, which was introduced in March 2023, would make a transformational impact on the care crisis, but emergency relief is needed right now, which this bill would provide.

“My disability means I need assistance getting around and sometimes with communicating,” said Steve Grammer, a Disabled Self-Advocate living in Virginia. “When I was 22, my mom fell ill and I was placed in a nursing home. I got to see her just once before she passed away. After 9 long years, my dream of independence came true. With the help of in-home caregivers, I have my own apartment and I can choose what I want to eat, where I want to go, and what I want to do. I no longer worry about my food being served cold or my medications being administered late. I can stay out late with friends while we listen to our favorite bands. I have freedom—and a life like yours. I’m living proof that people who have been barricaded away can live on their own and thrive while contributing to their communities.”

“I started out in an institution,” said Veronica Ayala, a Disabled Self-Advocate living in Texas. “I was there for 18 really long months, and I was a child, so that was really traumatic. For 18 months, I didn’t have my mother to put me to bed, tell me a story, give me a bath. There was no love or attention given. Thankfully my mother realized that she could do it on her own with home and community-based services. With the right supports, anyone with a disability can live in their community. Anyone with a disability can succeed.”

Recent research from The Arc and the University of Minnesota shows that 35% of people with intellectual and developmental disabilities (IDD) are trapped on waiting lists for supports and services they desperately need, 19% of which have been waiting for more than ten years. This doesn’t just impact their lives – it’s having a ripple effect on their families and our economy. Nine in ten family caregivers reported that their careers have been negatively affected due to a lack of supports, and 66% have had to leave the workforce entirely. This is ultimately leaving families significantly stressed and financially strained.

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About The Arc of the United States: The Arc advocates for and serves people with intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy, and other diagnoses. Founded in 1950 by parents who believed their children with IDD deserved more, The Arc is now a network of nearly 600 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes. Through the decades, The Arc has been at the forefront of advances in disability rights and supports. Visit www.thearc.org or follow us @TheArcUS to learn more. Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

The US Capitol in Washington, DC

How the Government Shutdown Could Impact People With Disabilities

/in /by The Arc

If Congress fails to reach a deal to fund the federal government by September 30, the government will shut down, which means federal agencies will cease non-essential operations until a deal is reached. We want you to be fully informed about how the looming government shutdown could impact you!

Many people with disabilities rely on a range of public programs, such as Social Security, Medicaid, Medicare, Supplemental Nutritional Assistance Programs (SNAP), and others that support their daily needs, health, and independence. They also benefit from programs that provide housing assistance, job training, special education, childcare, and developmental disability programs for supports and services. What’s more, many federal agencies enforce critical laws against disability discrimination, including the Americans with Disabilities Act.

Here’s what we want you to know. Social Security and Supplemental Security Income (SSI) payments will continue during a shutdown. While these critical needs will continue to be met, a prolonged shutdown could exacerbate ongoing customer service issues created by the underfunding of the Social Security Administration (SSA). Many people with disabilities need SSA’s support in navigating benefits and already endure long wait times for disability determinations.

Many of the other programs that people with disabilities rely on are administered by state governments, with critical oversight and administration conducted by the federal government. Currently, all 90 million Medicaid beneficiaries must go through a renewal process following the end of the COVID-19 public health emergency. According to the Kaiser Family Foundation, nearly three-quarters of all people losing Medicaid had their coverage terminated for procedural reasons. CMS recently took the major step of making 30 states pause their renewal process for failing to comply with federal law. The lack of this critical federal oversight could result in many more people with disabilities unjustly losing their Medicaid benefits. Make sure you don’t lose yours.

There is also considerable concern about the impact of the childcare funding crisis resulting in tens of thousands of childcare centers potentially closing and millions of kids potentially losing this critical avenue for early development. This is happening because of the expiration of pandemic emergency relief funds that were used to support struggling daycare centers. Families already experience significant hardship finding childcare options for kids with disabilities, which could worsen without action by Congress.

Looking to the future, a government shutdown raises the potential for additional cuts to government funding in order to reach a deal to reopen. The agreement to stop a default in May 2023 already set new caps on spending for FY 2024 and 2025. Those agreed-upon caps undermine critical programs and services. The Social Security Administration, for example, is facing a customer service crisis and programs like the Individuals with Disabilities Education Act (IDEA), which ensures students with a disability are given a free appropriate public education, have never been fully funded.

The reality is that funding for programs for people with disabilities needs to be significantly expanded, not cut. A government shutdown creates the political environment for cuts, going in the wrong direction for people with disabilities and their families. If that happens, you can expect that The Arc will use its power and influence to fight back.

The Arc logo

New Bipartisan Bill Would Advance Economic Security for Disabled Americans

/in , , /by The Arc

Washington, DC – The Supplemental Security Income (SSI) program was designed to combat poverty among people with disabilities, but the program’s outdated rules do just the opposite—forcing people to live in poverty to qualify for monthly assistance. Today, The Arc celebrates the introduction of the SSI Savings Penalty Elimination Act by Senator Sherrod Brown (D-OH), Senator Bill Cassidy (R-LA), Representative Brian Higgins (D-NY), and Representative Brian Fitzpatrick (R-PA). This bipartisan bill, which is also supported by over 370 organizations, makes long-overdue reforms to the SSI program that would empower millions of people with disabilities to earn and save more money for their futures.

The SSI program was established 50 years ago and provides critical benefits to over 7.5 million people with disabilities and older adults to help them pay for basic needs like food, clothing, and shelter. But outdated eligibility rules punish SSI beneficiaries for saving money, pushing them into poverty. SSI also guarantees access to Medicaid in most states, which covers long-term services and supports and health care. Right now, people who get SSI cannot have more than $2,000 in financial resources and married couples can only have $3,000. Resources that count towards the SSI asset limit include cash, money in bank accounts, most retirement accounts, stocks and bonds, the value of life insurance policies and burial funds over $1,500, and some personal property. This strict asset limit has not been updated since 1984 and is not indexed to inflation.

“Decades of inflation and inaction have turned a crucial safety net program into a tightrope,” said Darcy Milburn, Director of Social Security and Healthcare Policy at The Arc of the United States. “The maximum amount of money an SSI beneficiary can have in a bank account is 80% less than what beneficiaries were allowed to save in 1972. SSI’s strict asset limits force people with disabilities to live on a financial knife’s edge. It’s an incredibly difficult administrative burden and a very delicate balancing act that can easily tip to losing benefits altogether – which can be catastrophic.”

The SSI Savings Penalty Elimination Act would raise the SSI asset limit to $10,000 for individuals and index it to inflation moving forward. It would also raise the limit for married couples to $20,000 to help correct a harmful marriage penalty. The bill would significantly improve the lives of millions of people with disabilities and allow SSI beneficiaries to use their own savings to address needed emergencies when they arise.

SSI’s low asset limits combined with meager cash benefits are leaving 4 in 10 beneficiaries in poverty. People with disabilities live in poverty at more than twice the rate of those without disabilities, and SSI is a driving factor. These barriers are compounded by the Social Security Administration being in a state of crisis, where millions are waiting for appointments, decisions on applications, and appeals on rejected claims.

“Raising the SSI asset limit is one of the most important things we can do right now to improve financial security for millions of older adults and people with disabilities,” said Milburn. “The current asset limits trap people in poverty, create barriers to work, and make financial independence virtually impossible. SSI beneficiaries cannot save for necessary expenses like a security deposit or car repairs without the risk of losing their benefits, leaving many just one emergency away from homelessness and hunger. The negative impacts of the current SSI asset limits extend beyond individual SSI beneficiaries to their families, communities, and our economy as a whole.”

The Arc has advocated relentlessly for changes to SSI asset limits and against the existing unfair and discriminatory caps. For many years, we have urged Congress to update SSI requirements and benefits so that people with disabilities can have greater financial security and support, as well as pursue opportunities to build their futures.

To meet real-life people who are impacted by SSI asset limits, read these stories from Lauren and Jen and Eddie.

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About The Arc of the United States: The Arc advocates for and serves people with intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy, and other diagnoses. Founded in 1950 by parents who believed their children with IDD deserved more, The Arc is now a network of nearly 600 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes. Through the decades, The Arc has been at the forefront of advances in disability rights and supports. Visit thearc.org or follow us @TheArcUS to learn more. Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

Media Contact: Jackie Dilworth, dilworth@thearc.org