A school bus stopped with a diverse group of children, including children with IDD, waiting to get on and off the bus.

DC’s OSSE Sued for Failure to Provide Safe and Reliable School Transportation, Denying Disabled Students Access to Education

Class Action Seeks to Remedy Systemic Failure and Violations of Federal and State Law

March 7, 2024 – Parents and guardians of children with disabilities living in the District of Columbia (DC), along with The Arc of the United States, filed a class action lawsuit today against DC’s Office of the State Superintendent for Education (OSSE) for failing to provide safe, reliable and effective transportation to and from schools for children with disabilities, thereby denying students equal access to their education and unnecessarily segregating them from their peers.

“The buses meant to help children with disabilities build their education and futures are instead perpetuating their exclusion. This is not just a matter of tardiness or inconvenience. It’s stealing children’s opportunities to learn, grow, and connect with their peers,” said Shira Wakschlag, Senior Director of Legal Advocacy & General Counsel of The Arc of the United States, a non-profit that works to promote and protect the civil and human rights of people with intellectual and developmental disabilities. “This systemic failure segregates students with disabilities from their peers and deprives them of equal access to education in violation of the law. When school buses become barriers themselves, we need to fight to ensure that no child is left stranded.”

According to the complaint, the OSSE Division of Transportation (OSSE DOT) has continually failed to provide consistent, safe and properly equipped transportation:

  • Buses routinely arrive very late to pick students up from their homes, or do not arrive at all, causing kids to miss an exorbitant number of school days. One 14-year-old student was late to school 90 times in the 2022 – 2023 school year.
  • Students are picked up early from school and miss critical instructional time or are left stranded at school without guaranteed transportation back home. “Because [my child] consistently arrived home late, he would miss critical therapies that were ordered by his doctor,” said Veronica Guerrero, plaintiff and mother of a 14-year-old student.
  • Students are forced to spend excessive time on the bus, causing physical and mental harm when they are unable to access food, medication, or toilets. As a result, one 13-year-old student with a rare chromosomal disorder has arrived home on multiple occasions with a soiled diaper.
  • Buses do not provide appropriate accommodations (including properly trained medical personnel) and equipment that children with disabilities need to ride the bus safely. One eight-year-old student’s medical conditions require that she ride the bus with a nurse present. On multiple occasions, and without notice to the family, the bus arrives without a nurse onboard to properly care for her.
  • Buses cannot be reliably tracked, and families have no way to find out where their children are located while riding a bus. One 11-year-old student was missing for four hours before school staff located him.

“DC was under court supervision after a lawsuit for the exact same problem until 2012. Although the District had shown they were moving in the right direction then, now we are moving back to where we once were despite years of parents and community leaders working together to attempt change through local advocacy efforts,” said Kathy Zeisel, Director of Special Legal Projects of the Children’s Law Center and counsel for the plaintiffs. “We can no longer plead and hope for change. We’re taking action to ensure DC children receive the education they deserve.”

“The District’s failure to provide safe, reliable, and appropriate transportation to students with disabilities is part of a trend where the District does not live up to its obligations to children and families,” said Kaitlin Banner, Deputy Legal Director of the Washington Lawyers’ Committee for Civil Rights and Urban Affairs and plaintiff counsel. “We hope this lawsuit creates the systemic changes we need for students to get to school safely and on time so they can learn.”

The plaintiffs include parents and guardians of children with a range of disabilities who require transportation accommodations and support to access their education. Together they seek to remedy this systemic failure, which violates federal and state law, including the Individuals with Disabilities in Education Act (IDEA), Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act, and the District of Columbia Human Rights Act (DCHRA).

Under the IDEA, DC students with disabilities are entitled to a free appropriate public education (FAPE), which must include services and accommodations set forth in students’ individualized education plans (IEPs), including transportation. The ADA, Section 504, and the DCHRA require that students with disabilities have an equal opportunity to access their education and prohibit unnecessary segregation of students with disabilities.

“Children with disabilities are missing critical education and related services, all of which are necessary for them to receive a free appropriate public education guaranteed under the IDEA,” said Margaret Warner, a Partner at international law firm McDermott Will & Emery and counsel for the plaintiffs. “OSSE’s transportation system that provides these services continually fails to reasonably support DC students’ special education, as mandated by their IEPs.”

The case is Robertson v. District of Columbia and has been filed in the US District Court for the District of Columbia.

The plaintiffs are represented by Shira Wakschlag and Evan Monod of The Arc of the United States; Kathy Zeisel of DC’s Children’s Law Center; Kaitlin R. Banner, Margaret F. Hart, and Chelsea Sullivan of the Washington Lawyers’ Committee for Civil Rights and Urban Affairs; and Margaret H. Warner, Eugene I. Goldman, Theodore E. Alexander and Christopher M. Shoemaker of McDermott Will & Emery LLP.

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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. There are over 7 million people with IDD in the United States, which encompasses over 100 different diagnoses. 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.

About Children’s Law Center
Children’s Law Center believes every child should grow up with a strong foundation of family, health, and education and live in a world free from poverty, trauma, racism and other forms of oppression. Our more than 100 staff—together with DC children and families, community partners, and pro bono attorneys—use the law to solve children’s urgent problems today and improve the systems that will affect their lives tomorrow. Since our founding in 1996, we have reached more than 50,000 children and families directly and multiplied our impact by advocating for city-wide solutions that benefit hundreds of thousands more. For more information, please visit www.childrenslawcenter.org.

About the Washington Lawyers’ Committee for Civil Rights and Urban Affairs
The Washington Lawyers’ Committee for Civil Rights and Urban Affairs partners with community members and organizations on scores of cases to combat discrimination in housing, employment, education, immigration, criminal justice reform, public accommodations, based on race, gender, disability, family size, history of criminal conviction, and more. The Washington Lawyers’ Committee has secured a relentless stream of civil rights victories over the past five decades in an effort to achieve justice for all. For more information, please visit www.washlaw.org.

About McDermott Will & Emery
McDermott Will & Emery partners with leaders around the world to fuel missions, knock down barriers and shape markets. Our team works seamlessly across practices and industries to deliver highly effective solutions that propel success. More than 1,400 lawyers strong, we bring our personal passion and legal prowess to bear in every matter for our clients and the people they serve. For more information, please visit www.mwe.com.

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Landmark Trial Challenging Regressive Voting Rights Provisions in Texas Senate Bill 1 Concludes

Plaintiffs argue state law discriminates against voters of color and voters with disabilities, threatening democratic foundations.

San Antonio, TX – A six-week trial challenging regressive voting rights provisions in Texas’ Senate Bill 1 (S.B. 1) concluded with closing arguments today in the U.S. District Court for the Western District of Texas. The lawsuit asserts that S.B. 1 violates the First, Fourteenth, and Fifteenth Amendments of the U.S. Constitution and Section 2 of the Voting Rights Act by targeting and making more difficult the methods and means of voting used by voters of color. Plaintiffs also argue the law violates the Americans with Disabilities Act, Section 504 of the Rehabilitation Act of 1973, and Section 208 of the Voting Rights Act by imposing voting barriers that discriminate against voters with disabilities and deny people with disabilities full and equal opportunities to participate in the state’s voting programs.

The case is comprised of five lawsuits, including Houston Area Urban League v. Abbott, which was filed in 2021 by the Legal Defense Fund (LDF), Reed Smith LLP, ArentFox Schiff, and The Arc on behalf of the Houston Area Urban League (HAUL), Delta Sigma Theta Sorority, Inc., The Arc of Texas, and Jeffrey Lamar Clemmons, a poll worker.

Plaintiffs are challenging several provisions within the restrictive law including: a ban on drive-thru voting; restrictions on early voting hours, which impose a ban on 24-hour voting; and new ID requirements for voting by mail. S.B. 1 also establishes new requirements—and possible criminal penalties—for people who assist voters who need help filling out their ballots, including voters with disabilities.

The timing of a decision from Judge Xavier Rodriguez is pending.

“True democracy does not tolerate barriers that make it harder for citizens to vote based on race or ability, but rather it encourages voting and political participation because diversity of thought, ability, and background makes us stronger,” said Amir Badat, Special Counsel, Legal Defense Fund. “S.B. 1 runs counter to the sentiment of participation and democracy.”

“We are not just in a legal battle; we’re fighting for the very heart of our democracy,” said Elsie Cooke-Holmes, International President of Delta Sigma Theta Sorority, Inc. “S.B. 1 is a calculated assault on our foundational values. We remain steadfast in combating these discriminatory practices to guarantee every citizen’s unimpeded access to the ballot box, ensuring their vote is cast and counted.”

“Democracy works when elections are accessible to all eligible voters,” said Kenneth Broughton, Partner, Reed Smith LLP. “This legislation prevents, inhibits, and discourages eligible voters from casting their ballots in violation of the Voting Rights Act and the United States Constitution.”

“We are proud to stand with our clients Houston Area Urban League, Delta Sigma Theta, The Arc of Texas, and Jeffrey Clemmons, to protect the rights of all Texans—no matter their race, their language, or whether or not they identify as having disability—to meaningfully participate in the political process,” said J. Michael Showalter, Partner, ArentFox Schiff.

“S.B. 1 poses a Catch-22 for disabled voters, because it makes both in-person voting and voting by mail more burdensome and inaccessible,” said Shira Wakschlag, Senior Director of Legal Advocacy & General Counsel, The Arc of the United States. “Throughout trial, we have heard from voters with disabilities about how S.B. 1 raises the cost of voting and forces voters with disabilities to rely on burdensome workarounds that require them to expend significant additional time, subject themselves to physical pain and mental stress, experience multiple ballot rejections, and work twice as hard as non-disabled voters in order to participate in the voting process and have their vote counted, making them feel like second-class citizens. This is not the equal opportunity the ADA was enacted to provide and cannot possibly be consistent with the ADA’s clear and comprehensive mandate to eliminate discrimination against people with disabilities and integrate them into the mainstream of American life.”

“In 2020, we saw bigger turnout numbers in Harris County than ever before. Not only can we boast that we have the most diverse county in the nation, but we are also civically engaged,” said Judson Robinson III, President & CEO of the Houston Area Urban League. “We see S.B. 1 as a tool being used to completely disrupt diverse voter engagement and participation here in Houston. Additionally, S.B. 1 makes it nearly impossible for hourly workers to participate in our elections. We believe now, and always, that shift workers deserve their right to vote just like everyone else.”

Contacts:

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A Journalist’s Guide to Disability for Election 2024

Journalists, did you know people with disabilities are the largest minority voting bloc in our country? It’s also a population that has been growing rapidly as a result of the COVID-19 pandemic. Yet all too often, people with disabilities and the issues vital to them and their loved ones are absent from candidate debates, interviews, and media coverage.

Disability intersects with every issue because people with disabilities exist in every community and have diverse identities and beliefs. In addition, many disability issues are directly impacted by legislation and policies. That’s why it’s crucial your election coverage addresses these issues.

The upcoming elections carry substantial significance, particularly for the rights and essential services for people with disabilities. Their experiences and concerns must be prioritized alongside other critical issues. Including disability voices and highlighting disability issues also reflects a commitment to diversity and inclusion and educates all voters.

To ensure accessible and inclusive coverage, please keep the following considerations in mind.

Representation: The media has immense power in shaping ideals in our society. That’s why representation of people with disabilities matters, which means looking for disability angles in the issues you cover, interviewing disabled people about a wide range of topics, and putting forth accurate and respectful portrayals of them. Here are a few other tips:

  • Normalize the supports and technologies people with disabilities need to navigate daily living and fully participate in our society.
  • Educate yourself and your colleagues about ableism.
  • Be vigilant about how your story may propagate negative stereotypes or feature disabled people as a burden or inspiration.
  • Make sure photos that accompany your news stories encompass underrepresented people with disabilities, including people with intellectual and developmental disabilities.
  • When covering disability issues, don’t just speak to thought leaders and family members – interview diverse people with disabilities about their firsthand lived experiences.
  • Include the perspectives of people with disabilities in all kinds of stories, not just ones talking about disability.

Inclusive Language: The language used to describe people with disabilities is very individualistic. Person-first language (i.e., people with disabilities) emphasizes the person, not the disability. By placing the person first, disability is no longer the primary, defining characteristic of an individual, but one of several aspects of the whole person. Alternatively, identity-first language (i.e., disabled person) emphasizes a person’s disability as a core part of their identity. When interviewing a person with a disability, you should always ask how they prefer to be identified. For most IDD communities, if your story doesn’t focus on one person, we recommend using person-first language. Within the autism community, many self-advocates prefer and appreciate the use of identity-first language (i.e., autistic person). In addition, please avoid using the term “special needs” in your stories as this terminology is vague and becoming outdated. Find more resources and education on language from the National Center on Disability and Journalism. If candidates or colleagues are using offensive, derogatory, or harmful rhetoric for people with disabilities, we urge you to call them out.

Accessible Information: The news is a vital source of information and education for many, but not everyone can access it equally. Ensure that your reporting is accessible to people with various disabilities. Write in plain language, consider a multimedia approach to sharing your story (i.e., visual and text-based), provide accurate captions and transcripts for all audio and visual content (including web and social media streaming), use text descriptions of the content and purpose of images, use accessible fonts and formatting for online content, and put hyperlinks in context so screen reader software can provide more information. You can use a free web accessibility checker to identify issues.

To enhance your understanding of the issues impacting the disability community and guide your coverage of candidates and their stances, here’s what you should know.

Voting Barriers: Despite being such a significant population, people with disabilities are less likely than nondisabled people to turn out to vote in elections. That’s because they face a multitude of barriers in casting their votes. The Arc is working with other civil rights groups to challenge sweeping voter suppression laws that make it more difficult for voters with disabilities to participate in our democracy. We hope that you will do your part by shining a spotlight on policies and practices that hinder disability rights and inclusion in your community. Investigate and report on any discriminatory practices or barriers that may prevent individuals with disabilities from exercising their right to vote. This includes issues around mail-in voting, drop box voting, guardianship, getting support from a person of their choosing to cast their ballot, and accessible voter information. In addition, when covering campaign events and polling stations, always include accessibility information for these locations (i.e., whether an ASL interpreter will be there or if the location has wheelchair access).

Covering Topics Important to People with Disabilities: Your election reporting should cover issues and policies that directly impact people with disabilities. Report on the candidates’ stances on these topics and the impact of proposed policies. Below are areas that are causing deep inequities in the quality of life, autonomy, and opportunities for people with disabilities during this election cycle.

  • Getting A Safe & Inclusive Education: Education is a vital issue for voters, and everyone agrees that schools should be safe and nurturing places for all children. For students with disabilities, it’s too often a nightmare. Some of the barriers they face include disproportionate suspensions, harsh discipline practices, isolation from general education classes and peers, a dire shortage of special education teachers, low expectations and support, higher rates of being bullied, and a lack of urgency around identifying students who need special education services. It’s no wonder the academic achievement and graduation rates for students with disabilities lag far behind their peers. It’s important that journalists and candidates draw attention to these systemic issues that have a big impact on the futures of people with disabilities. Get a deeper look at these education issues so you can shine a spotlight on these injustices.
  • Experiencing the Dignity of Employment: As with most elections, candidates will address key aspects of job growth, labor disparities, worker rights, and the evolving job market. While these issues impact nearly every voter, one important group continues to be ignored: people with disabilities. Roughly 78% of people with disabilities and 85% of people with IDD are unemployed. When people with IDD do find employment, they are often paid less money for doing the same work. Most people with disabilities want to work and earn a living, but biases about their abilities and accommodations continue to keep them out of the workforce. Because of these realities, people with disabilities are twice as likely to live in poverty. People with IDD should be employed alongside people without disabilities and earn competitive wages, but too many barriers exist that lead to unemployment or underemployment. COVID-19 had a positive impact on the employment of disabled people, due to the labor shortage and ample remote work, but policies are quickly reversing. Discussions of employment must center disability and how candidates intend to improve the lives and opportunities of workers with disabilities. Learn more about employment the barriers and best practices.
  • Living in the Community, Not an Institution: People with disabilities want to live in their own homes and communities, not in nursing homes or institutions where their freedoms and choices are limited. Medicaid is a key program that makes community living possible through long term supports and services (LTSS). Every U.S. state has a Medicaid program, and millions of people with disabilities rely on LTSS for daily activities, such as dressing, bathing, meal preparation, taking medication, employment support, mobility assistance, and more. Yet LTSS has been chronically underfunded for years, resulting in a national shortage of direct care workers, years-long wait lists for access to services, and, ultimately, isolation and institutionalization that strips people with disabilities of their dignity. More than 650,000 people – 73% of which are people with IDD – are stuck on waiting lists for a nationwide average of 67 months. Medicaid also has an institutional bias, which means states that receive federal dollars for Medicaid must cover services within institutions, but community-based services aren’t guaranteed. This crisis has largely been under the radar as the general public has the misconception that there are ample services available for people with disabilities. Get well-versed on the LTSS issue and include it in conversations and articles involving state and federal safety net programs.
  • Experiencing Victimization and Criminalization: Crime rates and safety in communities are always key issues during elections. A critical and often overlooked angle is the overrepresentation of people with disabilities in the criminal justice system. Disabled people are more likely to experience victimization, be arrested, be charged with a crime, and serve longer prison sentences once convicted, than those without disabilities. Individuals with other marginalized identities are even more likely to get caught up in the system. Once entangled, they face unique challenges, bias, and inaccessible services, which only perpetuates the cycle of criminal justice involvement. People with disabilities must be afforded the supports and accommodations required to make justice and fair treatment a reality. Learn more about criminal justice issues to guide your coverage.
  • Supporting Paid and Unpaid Caregivers: Underfunding in LTSS has also created a crisis in the availability of Direct Support Professionals (DSPs), the workers who provide these services. DSPs make on average $15 an hour nationally, which is the same wage, or less, as workers in fast food, convenience, or retail – or even unemployment. Given this low investment in their skilled work, DSPs face a significant turnover rate of 30-70%. Many DSPs want to continue doing this important work, but it is not financially sustainable. At the same time, federal regulations have remained largely silent about training requirements, which means providers are relying on unqualified and poorly trained people more than ever, and then scrambling to invest in their workforce.With dwindling access to skilled DSPs, families must increasingly fill in the gaps to ensure their loved ones have the support they need for a quality, meaningful life. Nearly one million U.S. households have an adult with IDD living with and supported by a caregiver. Yet managing the needs of people with disabilities without training or support is leaving caregivers stressed, isolated, in poor health, and suffering financially. Nine in ten caregivers of people with IDD report that their caregiving responsibilities had an impact on their employment. Many have lost their jobs and/or income because of the demands of care. What’s more, it’s becoming a multi-generational crisis as people with IDD are living longer than ever, putting the burden of care on siblings and younger family members. Paid caregivers deserve more investment in their work and unpaid caregivers need public and private support. Get background on the family caregiver crisis and what can be done to help.
  • Having Financial Independence: Social Security and Supplemental Security Income (SSI) play a vital role in helping people with disabilities pay for basic needs like food, clothing, and shelter. More than 12 million people with disabilities receive benefits from Social Security, SSI, or both. These programs were designed to combat poverty among disabled people, but certain income-based and/or asset-limit eligibility policies do just the opposite. SSI benefits are extremely modest, averaging only about $550 per month, and beneficiaries cannot have more than $2,000 in assets, neither of which have been indexed to inflation. Thus, many people with disabilities cannot plan and save for future needs like others, contributing to ongoing economic inequalities often resulting in lifelong poverty. Many are just one emergency away from homelessness and hunger. 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. Learn more about financial security issues and policies that you can get candidates’ positions on.

Looking for even more topics to explore and experts to interview?

Check out our position statements and our press center to discover other issue areas that you can explore in your coverage. You can also schedule an on-the-record or background interview with The Arc’s local and national experts. Simply contact the communications team below.

Kristen McKiernan, Senior Executive Officer of Communications & Marketing
mckiernan@thearc.org or 202-534-3712

Jackie Dilworth, Director of Communications
dilworth@thearc.org or 202-617-3271

About The Arc
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.

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5 Disability Stories Journalists Should Be Covering Right Now

Are you a journalist looking for impactful stories that demand greater coverage? If they aren’t already, disability issues should be part of your reporting. One in 4 U.S. adults and 1 in 6 people worldwide report having a disability, statistics that are likely underreported, yet this population remains underrepresented in media. Increased coverage is crucial for social progress. When news stories ignore the disability perspective, they perpetuate exclusion and misunderstanding. By spotlighting disability voices and angles, journalism can help dismantle stigma, drive policy reform, and push society closer to inclusion and equality.

The Arc is here for you. We’ve been driving positive change for individuals with intellectual and developmental disabilities (IDD) for almost 75 years. To do our part in media representation, we’re launching this new blog where we’re bringing you timely and often overlooked stories.

Here are 5 urgent angles you should report on:

1. The Home and Community-Based Services Funding Crisis

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 make that possible for millions of people with disabilities and older adults, supporting daily needs such as dressing, bathing, meal preparation, taking medication, employment support, mobility assistance, and more. Unfortunately, chronic underfunding of HCBS has created a catastrophe for people who need it most, resulting in a national shortage of direct care workers and years-long wait lists for access to services. This access crisis is now exacerbated by the end of Medicaid continuous enrollment this year, which has led to states kicking more than 10 million people off Medicaid. Without access to basic support for daily living, people with disabilities and older adults are at risk of being confined, isolated, and neglected in institutions or trapped in their homes. With dwindling access to HCBS, the burden is increasingly falling on families to step in as caregivers, leading to financial hardship, lost jobs, social isolation, and mental and physical exhaustion.

Powerful journalism exposing the impact of this crisis can spur public pressure and policy reform, particularly in getting emergency federal funding in the end-of-year fiscal package. Storytelling focused on those confined against their will, disabled people who lost their HCBS access due to the Medicaid unwinding, or families under strain due to lack of accessible care can shine a light on this overlooked issue.

2. Disability-Based Discrimination in Health Care

People with disabilities face a multitude of barriers in accessing our health care system. One pervasive and largely overlooked issue is widespread disability-based discrimination in health care, and its dire implications. The issue is complex and multifaceted, but some of the barriers include inaccessible equipment and physical environments, a lack of training and time in caring for people with disabilities, and explicit and implicit biases including assumptions about quality of life and worthiness. This leads to people with disabilities being denied life-saving treatments or even routine preventative healthcare at much higher rates. Ableism in healthcare directly limits lifespans and causes avoidable suffering. Black and brown people with disabilities face particularly dangerous disparities.

The U.S. Department of Health and Human Services (HHS) is proposing new regulations that would prohibit medical providers from discriminating against people with disabilities and set new standards for accessibility at the doctor’s office. Section 504 of the Rehabilitation Act of 1973 is a landmark civil rights law that prohibits discrimination on the basis of disability in programs and activities that are funded by the Federal government. Unfortunately, it hasn’t been updated for 50 years ago. The proposed updated rules are necessary to ensure disabled peoples’ lives are not valued less than others and that health care is accessible to all.

Increased journalism focused on exposing discrimination and disregard for disabled lives is vital. Storytelling and data-driven reporting can raise public awareness and pressure health systems to reform. We must make medical providers see all patients as equally deserving of quality treatment.

3. Overcriminalization of People With Disabilities

People with disabilities, especially people of color, are dramatically overrepresented in the criminal justice system. Yet media coverage often fails to capture their experiences. According to the Bureau of Justice Statistics, people with disabilities face much higher arrest and incarceration rates – for example, Black youth with disabilities are 17% more likely to be arrested than their non-disabled peers. And studies show that up to 50% of people shot and killed by police have a disability. Despite the prevalence of this issue, many officers lack training on interacting with and supporting this high-risk population. Their failure to accurately perceive disabilities often escalates encounters, increasing trauma, violence, and unjust stigma. There are solutions, like The Arc’s National Center on Criminal Justice and Disability’s (NCCJD) efforts in crisis prevention and response teams led by the disability community. Similar initiatives recognize that reform requires centering the voices of those impacted.

We urge you to investigate the entanglement of people with disabilities in the justice system and spotlight solutions. Share stories that humanize, contextualize, and advance change. Your reporting has immense power to create a more just, inclusive society.

4. Lack of Employment Opportunities

Diversity in our workforce strengthens cultures and bottom lines, but one important group continues to be overlooked: people with disabilities. Meaningful employment not only provides vital income, but it also fosters independence, dignity, and respect. Yet people with disabilities, particularly people with IDD, are extremely underrepresented in the workforce, despite their desire to work. People with disabilities have long faced exclusion and seclusion, and that issue persists today. Barriers include limited job opportunities, misconceptions about accommodations, and overt discrimination. They often leave school with little to no community-based vocational experience or planning for transitioning from school to work. When employed, few people with IDD have opportunities to advance, explore new possibilities, or, in their later years, retire. Unrealistically low limits on assets and earnings add to a fear of losing vital public benefits if they work too many hours or earn too much. Lack of other services — like transportation or accommodations — can also hinder success.

Many people with IDD succeed in roles alongside people without disabilities. Data proves that businesses employing people with disabilities outperform businesses that do not. In addition, people with disabilities, on average, stay in their jobs longer than their counterparts without disabilities. Journalists can explore the barriers to employment, workplace discrimination, myths about abilities and accommodations, and inclusive hiring practices. Your work can help break down barriers, reduce discrimination, and create a society where everyone has access to meaningful employment.

5. Exclusion From Sexual Education

Everyone deserves access to accurate, unbiased, and inclusive sex and relationship education. Yet a shocking majority of people with IDD – up to 84% – do not receive sexual education in school systems and other settings. At the same time, some individuals may engage in sexual activity as a result of poor options, manipulation, loneliness, or physical force rather than as an expression of their sexuality. This leads to another horrifying statistic: people with IDD are sexually assaulted and/or raped at a rate seven times higher than those without disabilities. The lack of access to sexual education varies widely by state and only five states require sex ed to be accessible to people with disabilities. For decades, people with IDD have been thought to be asexual, having no need for loving and fulfilling relationships with others. Individual rights to sexuality, which is essential to human health and well-being, have been denied. This loss has negatively affected people with IDD in gender identity, friendships, self-esteem, body image and awareness, emotional growth, and social behavior. Another sensitive dynamic is the parent’s understanding and acceptance that sex education is appropriate and important for their child with a disability. Every person has the right to exercise choices regarding sexual expression and social relationships.

Journalists can play an important role in advocating for equitable access to comprehensive sex education programs, shedding light on the imperative of empowering people with IDD to make informed decisions about their sexual health and relationships.

Considering how large and diverse the disabled population is, we encourage you to include their viewpoints in all of your stories, whether they relate to disability or not! We also hope you will investigate these topics in your own communities. Please contact us at dilworth@thearc.org if you need sources, background information, or other issues. Also, be sure to visit our Press Center to find guides on reporting on disability. We are excited to see your impactful work!

Congresswoman Cathy McMorris Rodgers, U.S. Representative for Washington State stands in front of a podium. Behind her is an orange sign with The Arc of Spokane logo.

Amazon Announces Donation Program With The Arc to Advance Connectivity and Independence for People With Disabilities

Amazon Will Donate 5,000 Devices, Provide Monetary Support, and Engage IDD Community for Ongoing Feedback

Washington, DC – Technology can be life-changing, but people with intellectual and developmental disabilities (IDD) disproportionately face barriers to access and adoption. Amazon and The Arc have announced a landmark community program that will expand technology access and empower greater independence for thousands of people with IDD.

Amazon is donating 5,000 Echo Show and Fire Tablet devices to nearly 600 chapters of The Arc across the United States. The Arc, along with TechSoup, the leading nonprofit network facilitating distribution and adoption of technology solutions, will implement the national donation program to its chapters. The donation will enable people with IDD to leverage technology to improve daily living. The organizations will also build upon their existing work of giving people with IDD the opportunity to provide product feedback on Amazon devices.

“This collaboration is about more than donating devices – it’s about empowering people with disabilities to live life on their own terms,” said Katy Schmid, Senior Director of National Program Initiatives at The Arc of the United States. “Autonomy, entertainment, education, inclusion – these are essentials of a meaningful life, and they continue to be out of reach for many people with IDD. Our community uses technology for their daily needs in inventive ways, and this program will give even more people greater control over everyday moments. Together, we can help close the digital divide and help people with IDD fully participate in society in ways many of us take for granted.”

Congresswoman Cathy McMorris Rodgers, U.S. Representative for Washington State stands in front of a podium. Behind her is an orange sign with The Arc of Spokane logo.“The disability community is full of untapped potential just waiting to be unleashed,” said Congresswoman Cathy McMorris Rodgers, U.S. Representative for Washington State. “In today’s digital world, innovative technology is the key to unlocking new and exciting opportunities for individuals living with disabilities to achieve their goals. I’m grateful for the efforts of Amazon and The Arc to further empower every person with a disability to live a more full and independent life.”

This partnership will help people like:

  • Grace, a tween with Down syndrome, autism, ADD, hearing loss, and visual impairment who uses her device to get ready in the morning, play her favorite songs, help with her academic work, and notify her parents when she needs help.
  • Scott, an adult with IDD and a hearing impairment who uses his device to hear the local weather, dance, and learn new things.
  • Jonathan, an adult with an intellectual disability and bipolar disorder who uses his device to listen to music, set an alarm for morning wake-up, stay organized, and be more in touch with his sister.

“We’re excited to work with The Arc to support and empower people with disabilities” said Leila Rouhi, Vice President of Trust for Devices and Services at Amazon. “It is energizing to see how our devices meaningfully improve the lives of customers like Grace, Scott, and Jonathan, and we will continue working to make the world more accessible through technology for people with IDD.”

The community program kicked off this week at a launch event with Congresswoman Cathy McMorris Rodgers held at The Arc of Spokane on November 20, 2023.

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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. There are over 7 million people with IDD in the United States, which encompasses over 100 different diagnoses, and over 80 million family members who love and care for them. 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.

About Amazon: Amazon is guided by four principles: customer obsession rather than competitor focus, passion for invention, commitment to operational excellence, and long-term thinking. Amazon strives to be Earth’s Most Customer-Centric Company, Earth’s Best Employer, and Earth’s Safest Place to Work. Customer reviews, 1-Click shopping, personalized recommendations, Prime, Fulfillment by Amazon, AWS, Kindle Direct Publishing, Kindle, Career Choice, Fire tablets, Fire TV, Amazon Echo, Alexa, Just Walk Out technology, Amazon Studios, and The Climate Pledge are some of the things pioneered by Amazon. For more information, visit amazon.com/about and follow @AmazonNews.

Headshot of Katherine Neas

The Arc of the United States Names Katherine Neas as Its Next CEO

Washington, DC – The Arc of the United States, the oldest and largest nonprofit serving people with intellectual and developmental disabilities (IDD), today named Katherine (Katy) Neas as its new CEO. Katy brings more than 35 years of experience in disability policy and public and nonprofit leadership to the role. Her tenure with The Arc of the US will begin in January 2024.

Headshot of Katherine NeasKaty is a visionary leader who has devoted her career to disability rights, and she has deep connections in the field. She joins The Arc from the U.S. Department of Education, where she served as Deputy Assistant Secretary in the Office of Special Education and Rehabilitative Services. Prior to that role, she was Executive Vice President of Public Affairs for the American Physical Therapy Association (APTA) and for Easterseals. She is widely regarded for her bipartisan and collaborative work, earning her roles including Past Chair of the Consortium for Constituents with Disabilities (CCD). Earlier in her career, Katy served as Legislative Assistant to Senator Tom Harkin and the U.S. Senate Subcommittee on Disability Policy, where she worked on landmark legislation such as the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA). Katy holds a B.A. from Georgetown University.

“We are very excited to welcome Katy Neas as the next CEO of The Arc,” said Laura Kennedy, Board President for The Arc of the US. “Her more than 35 years of working as a highly respected advocate for people with disabilities will continue to move The Arc forward with its important work. She is well known as an ally and thought leader by government officials and legislators, nonprofit providers, self-advocates, parents, and executive staff across the country. She is the right person for our organization as we continue to work hard to help every person with IDD be heard and have the opportunities to thrive.”

“Stepping into this role as CEO of The Arc feels like coming home,” said Katy Neas. “Throughout my career, I’ve been lucky to work arm-in-arm with fierce advocates and caring providers to drive progress. That open collaboration and trust is what makes The Arc so special – never losing sight that we do this WITH people with disabilities, not just FOR them. I’m in awe of The Arc’s profound legacy, from pioneering special education access to spearheading community living. Now, I’m honored to continue that legacy into the future, but we won’t rest on past wins. Together with families, self-advocates, and partners, we’ll build an even stronger organization to meet the challenges ahead. I can’t wait to listen and learn from every corner of this community and lead inclusively into the next era of success. The Arc’s brightest days lie ahead.”

“The Arc’s Board of Directors made a very wise choice in selecting Katy,” said Paul Marchand, a longtime and influential disability policy champion who served The Arc for 38 years. “I’ve worked closely with her for more than 30 years, and her disability policy knowledge is outstanding. She is a leader in all respects – smart, loyal, a good listener, and a coalition builder. Katy has held high level positions in nonprofits, in a huge federal agency, and she cut her teeth on Capitol Hill. She’s done it all, and The Arc couldn’t have found anyone better to lead into the future.”

As CEO of The Arc of the United States, Katy will be responsible for leading the nearly 75-year-old organization and its Washington, DC-based national office for 578 chapters across the United States. She steps into the role at a pivotal moment for disability rights, as issues like the caregiving crises, ongoing exclusion from schools and workplaces, and threat of losing hard-won civil rights have made The Arc’s mission more crucial than ever. Katy will build upon The Arc’s legacy and thought leadership among disability and civil rights groups while advancing its mission to ensure people with IDD can lead full, meaningful, and self-directed lives.

Katy was selected following an extensive national search led by Heidrick & Struggles and a Search Committee comprised of staff and Board members from The Arc, chapter executives, community partners, and a self-advocate. Heidrick & Struggles conducted town halls, surveys, and one-on-one meetings with key stakeholders, including The Arc’s National Council of Self-Advocates and chapter executives.

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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. There are over 7 million people with IDD in the United States, which encompasses over 100 different diagnoses, and over 80 million family members who love and care for them. 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.

The US Capitol in Washington, DC

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

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 Arc logo

New Bipartisan Bill Would Advance Economic Security for Disabled Americans

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

The Arc logo

Federal Court in Texas Hears Lawsuit Challenging S.B. 1, State Law Targeting Voting Rights

San Antonio, TX – Today, the United States District Court for the Western District of Texas began the first day of trial in a case challenging S.B. 1, a Texas law that targets voting access. The case is comprised of five lawsuits, including Houston Area Urban League v. Abbott which was filed in 2021 by the Legal Defense Fund (LDF), Reed Smith LLP, ArentFox Schiff, and The Arc on behalf of the Houston Area Urban League (HAUL), Delta Sigma Theta Sorority, Inc., The Arc of Texas, and Jeffrey Lamar Clemmons, a poll worker.

The lawsuit argues that S.B. 1 violates the First, Fourteenth, and Fifteenth Amendments of the United States Constitution and Section 2 of the Voting Rights Act by targeting and burdening methods and means of voting used by voters of color. Additionally, the plaintiffs argue the law violates the Americans with Disabilities Act, Section 504 of the Rehabilitation Act of 1973, and Section 208 of the Voting Rights Act by imposing voting barriers that will discriminate against voters with disabilities and deny people with disabilities full and equal opportunities to participate in the state’s voting programs.

The lawsuit challenges multiple provisions in S.B. 1, including its limitations on early voting hours and a ban on 24-hour voting; the elimination of drive-thru voting centers;  limitations on multiple drop-off locations for mail ballots; limitations on the distribution of mail-in ballot applications; limitations and possible penalties for voter assistants, including criminal felonies; expansion of the authority of partisan poll watchers; and criminal penalties against poll workers seeking to maintain order at the polling place.

“The plaintiffs in this lawsuit brought this case for one reason: voting is a fundamental right that is preservative of all other rights,” said Jennifer A. Holmes, Senior Counsel at the Legal Defense Fund (LDF). “But S.B. 1 is disenfranchisement by a thousand cuts. It makes voting harder at every stage of the process, disproportionately burdening Black and Latino voters and voters with disabilities. No plaintiff, or eligible Texas voter, should face these barriers to voting.”

“Our democracy should encourage voter turnout, not inhibit it,” said Reed Smith partner Kenneth Broughton. “This law erected roadblocks at every stage of voting, from registering to casting ballots. While election officials admitted there was no fraud to fix, they still made it harder to vote for all, particularly disabled people and voters of color.”

“Democracy begins with free and fair elections. Safeguarding voting rights and allowing voters to express their voices and be heard are fundamental to a democratic system. This legislation denies eligible voters this fundamental right and it needs to be protected,” said J. Michael Showalter, partner at ArentFox Schiff.

“Voter suppression is a disability rights issue,” said Shira Wakschlag, Senior Director of Legal Advocacy and General Counsel for The Arc of the United States. “People with disabilities have the fundamental right to vote and participate in our democracy, but this right has too often been denied. S.B. 1 disenfranchises voters with disabilities by making it harder to vote by mail and receive the assistance they need to vote, and it denies people with disabilities equal access to voting in violation of the law. If a wheelchair user faces an inaccessible building and must – with great hardship – get out of their wheelchair and crawl up the stairs to get inside, no one would argue that this is equal access. The same principle applies here. Voters with disabilities should not be forced to figuratively crawl up the steps to access the vote.”

“The Houston Area Urban League stands firmly against any legislation that could potentially disenfranchise voters, particularly those from marginalized communities,” said Judson Robinson, President and CEO of HAUL. “Our participation in this lawsuit is a testament to our dedication to ensuring that every eligible Texan has a fair and equal opportunity to cast their vote.”

“Texas Senate Bill 1 is a blatant attack on democracy and an egregious violation of the rights of all Texans, with a disproportionate impact on Black and Latino communities and Americans with disabilities,” said Elsie Cooke-Holmes, co-plaintiff and international president of Delta Sigma Theta Sorority, Inc. “For 110 years, Delta Sigma Theta Sorority has been leading the charge in advancing voting rights for African Americans and women, and will persist in advocating for this cause. We stand united against these grave injustices and actively work to establish a fair and inclusive electoral system that honors the rights of all.”

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Media Contacts:
Jackie Dilworth, The Arc, dilworth@thearc.org, 202-617-3271
Ella Wiley, Legal Defense Fund (LDF), media@naacpldf.org, 212-965-2200
Brad Wise, NewsPros – Reed Smith LLP, brad@newspros.com, 925-588-4744
Linda Yun, ArentFox Schiff, linda.yun@afslaw.com, 312-258-4504
Kerry-Ann Hamilton, Delta Sigma Theta Sorority, Inc., inquiries@deltasigmatheta.org, 301-265-5100
Emaan England, Houston Area Urban League, eengland@haul.org, 404-668-2329

The Arc logo

Amicus Brief Filed in U.S. Supreme Court Case Emphasizes Importance of Testers to ADA Enforcement

If testers are stripped of standing, the result will be less private enforcement of the ADA, a less accessible society, and the continued exclusion of people with disabilities from community life.

Washington, DC – Eighteen leading disability advocacy organizations have filed a “friend-of-the-court” brief in the U.S. Supreme Court in Acheson Hotels v. Laufer, a case that will decide whether testers—disabled people who investigate compliance with the Americans with Disabilities Act (ADA)—have the ability to sue businesses for discrimination when their rights under that law are violated. The case is scheduled to be heard on October 4, 2023.

Civil rights testing—intentionally investigating and challenging discrimination—has been used as an effective tool of enforcement since the 1950s, helping ensure that public accommodations were integrated and housing discrimination, challenged. Congress included the same enforcement tools when it passed the ADA in 1990 that it had included in these earlier civil rights laws, and testing has proven to be an essential enforcement tool in this context as well.

Deborah Laufer is one such tester. She is a person with disabilities who has filed numerous cases against hotels for violating an ADA regulation that requires hotels to include certain information about accessibility features in their online reservation systems. Ms. Laufer is a “tester” in her cases because she voluntarily puts herself in a situation to experience discrimination—specifically, she visits hotel websites to investigate compliance with the reservation rule—and when denied the information to which the ADA regulations entitle her, she challenges that discrimination in court and seeks to make the hotels comply with the law.

Despite acknowledging that they were, in fact, violating the ADA, hotelier Acheson doesn’t think that tester standing is fair, and argues that people like Ms. Laufer should have an immediate plan to stay at a hotel before they can challenge the hotel’s discrimination. Acheson asks the Supreme Court to reverse a First Circuit opinion upholding discrimination claims brought against them by Ms. Laufer as a tester.

The brief of amici opposes Acheson’s request and defends testing as essential to the enforcement of the ADA, arguing that eliminating tester standing would frustrate the ADA’s goal of equality of opportunity. Amici discuss how the indignity of unequal treatment has long been recognized as the sort of harm that can be remedied in court and explains how an individual’s motive, or status as a tester, does not change that. Amici also dispel a number of false claims made by Acheson and its supporters about ADA litigation.

“People with disabilities face rampant inaccessibility and discrimination that impacts every aspect of their lives—from travel to employment to health care and everything in between,” said Shira Wakschlag, Senior Director of Legal Advocacy & General Counsel at The Arc of the United States. “Despite the ADA’s promise to create equal access, insufficient oversight and enforcement means that businesses frequently ignore the civil rights of disabled people, making their daily lives extremely difficult and undermining the rights guaranteed by the law. ADA testers are essential to ensuring the rights of people with disabilities are enforced and protected and that the full promise of the ADA is realized.”

“If individuals with the fortitude to take on the burden of ADA litigation as testers are stripped of standing, the result will inevitably be less enforcement of the ADA, frustration of its goals, and the continued exclusion of people with disabilities from community life,” said Michelle Uzeta, Deputy Legal Director at the Disability Rights Education and Defense Fund.

“Given that the ADA was signed into law more than 30 years ago and thousands of businesses remain inaccessible to people with disabilities, it is critically important the Supreme Court affirms the ability of testers to investigate compliance,” said Marlene Sallo, Executive Director of the National Disability Rights Network. “Testers ensure that travelers with disabilities do not discover their hotel is inaccessible when they show up at the door.”

“By the time a disabled person attempts to patronize a noncompliant public accommodation, it’s too late for a lawsuit to be much use,” added Amy Robertson, Counsel for Amici at Fox and Robertson, PC. “Systemic investigation by those protected by the ADA can accelerate society’s progress toward a time when they and others can go about their daily lives expecting—and attaining—access to a wide range of facilities and services.”

Amici are represented by attorneys Karla Gilbride, Amy Robertson of Fox & Robertson, PC, Justin Ormand of Allen and Overy LLP, Thomas Zito of Disability Rights Advocates, and Michelle Uzeta of Disability Rights Education and Defense Fund.

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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.

About Disability Rights Education & Defense Fund: The Disability Rights Education & Defense Fund (DREDF) is a national, nonprofit law and policy center led by people with disabilities and dedicated to advancing and protecting the civil and human rights of disabled people. Founded in 1979 by people with disabilities and parents of children with disabilities, DREDF remains board- and staff-led by members of the communities for whom it advocates.

About National Disability Rights Network: The National Disability Rights Network works in Washington, DC on behalf of the Protection and Advocacy Systems (P&As) and Client Assistance Programs (CAPs), the nation’s largest providers of legal advocacy services for people with disabilities.

Media Contacts:
Jackie Dilworth, The Arc, dilworth@thearc.org
Tina Pinedo, DREDF, tpinedo@dredf.org
David Card, National Disability Rights Network, press@ndrn.org