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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 thearcwebdev.wpengine.com 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@thearcwebdev.wpengine.com
Tina Pinedo, DREDF, tpinedo@dredf.org
David Card, National Disability Rights Network, press@ndrn.org

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A Major Win for Disability Rights From SCOTUS!

Statement from Shira Wakschlag, Senior Director of Legal Advocacy and General Counsel for The Arc of the United States, on Health and Hospital Corporation of Marion County v. Talevski:

“Today is a monumental win for disability rights and the principle that a private right of action is critical in the access, accountability, and antidiscrimination of our country’s Medicaid and safety net programs. The U.S. Supreme Court has upheld the rights of Medicaid beneficiaries to seek legal recourse when state officials are violating their rights. It sets a crucial precedent that will have far-reaching implications for people with disabilities in our health care system, housing, nutrition, education, disability, and other safety net programs. People with disabilities have long faced pervasive discriminatory treatment within American society, and they have relied on lawsuits to enforce Medicaid’s protections, including the landmark Olmstead v. L.C. case. One in four adults in America has a disability, the majority of whom rely on Medicaid and other safety net programs to live meaningful lives. Because of today’s decision, they will continue to have legal recourse if they face mistreatment or abuse or their benefits are taken away or denied, which happens more often than you may think. The Arc and our national chapter network help people with disabilities navigate these complex government systems, which frequently fail to help the people who need them most. Private lawsuits have been one of the only ways people can meaningfully enforce their rights in these crucial programs. This decision also ensures there is accountability for service providers, which has a direct impact on the quality of services and supports that millions count on. Ultimately, today’s win prevents the unraveling of 30 years of antidiscrimination progress set forth by the ADA, as well as ensuring that people with disabilities are less likely to be unnecessarily institutionalized. We urge health care providers, policymakers, and community leaders to embrace this decision and recognize the pivotal role safety net programs play in promoting health equity and ensuring the well-being of people with disabilities.”

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Special Education Is Complex. New Partnership Will Give Indiana and Maryland Families Free Support.

Washington, DC, May 19, 2023 – From low expectations and a dire shortage of special educators to isolation and informal suspensions, a quality education is not easy to obtain for U.S. students with disabilities. Caregivers of children with disabilities must become experts at advocating for their children in order to get the support they need. Today, Lids Foundation announced that is providing a $50,000 grant to The Arc to give Indiana and Maryland families free access to The Arc@School, an evidence-based special education advocacy curriculum. This grant has the potential to help over 285,000 children with disabilities living in those states succeed and build bright futures.

The Individuals with Disabilities Education Act (IDEA) was enacted nearly 50 years ago with the goal of providing equal opportunities for students with disabilities. Yet this foundation for the special education system has long failed these students, many of whom don’t receive the education and support they need to thrive. There is also little to no guidance or support for families navigating these complex systems. Lack of access to a quality education continues to cause not only significant gaps in academic achievement for students with disabilities, but also life skills and socio-emotional development – particularly for those with intellectual and developmental disabilities.

The Arc@School was created in 2016 in response to decades of troubling testimonies from self-advocates. The Arc@School is a self-paced online training program that helps caregivers of children with disabilities navigate the special education system from birth through age 21. The Special Education Advocacy Curriculum teaches families their rights under the law, how to ensure the school writes and implements an effective individualized plan (IEP), and how to work with their school to get their accessibility and support needs met. The program has eight modules that total nearly 10 hours of training. The partnership with The Arc and Lids Foundation will be a catalyst for building nationwide power and skills among families so their children with disabilities are valued members of the school population, particularly marginalized communities whose voices are often ignored.

“We are thrilled to partner with Lids Foundation and The Arc of the United States to provide free access to The Arc@School’s Special Education Advocacy Curriculum,” said Ande Kolp, Executive Director of The Arc of Maryland. “This partnership will offer strong support to Maryland families interacting with these confusing and broken systems that continue to cause extraordinary disparities among students with disabilities and their peers.”

“The Lids Foundation is excited to partner with The Arc and their mission to protect the rights of people with intellectual and developmental disabilities,” said Sarah Lim, Executive Director of Lids Foundation. “As a Foundation, we seek to remove barriers that prevent people from being able to live their lives to the fullest potential and cannot wait to join in on and be a part of the solution for so many families through The Arc chapters in Indiana and Maryland.”

“The number of calls we are getting from families about special education issues is exploding,” said Karly Sciortino-Poulter, Director of The Arc Advocacy Network at The Arc of Indiana. “Some of the ways that schools are treating students with disabilities would blow your mind. Thanks to this partnership with Lids Foundation, we can educate Indiana families on their rights and help ensure their children get an appropriate education.”

Lids Foundation has its roots in Indiana and Maryland, which is why this one-year, $50,000 grant is opening doors to families in those states. In Maryland, there are 109,443 students utilizing special education resources, which is 12.4% of the total Pre-K through 12th grade population. In Indiana, there are 175,866 students utilizing special education resources, which is 16.96% of the Pre-K through 12th grade population.

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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. The Arc has 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 and without regard to diagnosis. Visit www.thearcwebdev.wpengine.com 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 Lids & Lids Foundation: Lids Sports Group is the largest licensed sports retailer in North America, selling fan and fashion-oriented headwear and apparel across the North America, Europe and Australia through over 1,500 retail locations. The Lids Foundation provides support directly to local communities and to the charitable organizations that serve them to enable community members of all ages to live more active, healthy, and productive lives. Visit www.lids.com or www.lidsfoundation.org to learn more.

Media Contact: Jackie Dilworth, dilworth@thearcwebdev.wpengine.com

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Schools Are Restraining and Secluding Students With Disabilities. New Bill Would Limit Practices.

Students with disabilities disproportionately experience restraint and seclusion, practices that are not evidence-based and cause lasting trauma.

Washington, DC, May 18, 2023 – Restraint and seclusion are traumatic, outdated, and ineffective discipline practices that are commonplace in schools throughout the country. Even though they have caused thousands of injuries and deaths, there are no federal laws to protect children from the abusive use of these tactics. Today, Senator Chris Murphy and Representative Don Beyer reintroduced the Keeping All Students Safe Act (KASSA) for the 14th Congress in a row. KASSA would eliminate the use of seclusion and prohibit the practice of restraint in most cases and give parents a private right of action against school districts that misuse these practices. Restraint and seclusion are disproportionately used against students with disabilities, particularly Black students, and have long-lasting consequences on their achievement and health. We urge Congress to once and for all pass minimum federal safety standards for these practices.

“Protecting students with disabilities from physical harm and abuse shouldn’t be a debate, but it’s something we’ve been fighting for over a decade,” shared Robyn Linscott, Director of Education and Family Policy at The Arc of the United States. “Instead of evidence-based de-escalation practices, untrained school personnel are subjecting students with disabilities to terrifying violations of their human rights and their lives. Thousands of times a day, students are being locked in closets and bathrooms, pinned to the ground, restrained with mechanical devices for hours, and worse. These practices are life-threatening and they’re denying students with disabilities a full and safe inclusion in our education system. Now is the time for elected officials to show their constituents that their safety in school matters.”

Restraint is intended to be used as a last resort in emergencies when there is a threat of imminent physical harm. Too often, it is used for minor behavioral issues, not complying with instructions, or even to punish manifestations of a child’s disability. Over 101,990 students, the majority of which are students with disabilities, are subjected to restraint and seclusion every year, a number that experts agree is drastically underreported. Students with disabilities represent 13% of the student population, but account for roughly 80% of those subjected to restraint and 77% subjected to seclusion. Some students are repeatedly restrained and secluded despite the fact that there is no evidence these tactics are effective in reducing the occurrence of the behaviors being punished. A patchwork of state policies and a lack of federal oversight and accountability allow these practices to continue freely.

To make matters worse, many parents are not notified at all or in a timely manner after their child is subjected to restraint or seclusion. In some cases, parents have gone weeks or years without knowing these disciplinary tactics were used against their child. This is particularly challenging for parents of children with intellectual and developmental disabilities, many of whom are not able to communicate what happened to them. KASSA would ensure parents are notified of an incident of restraint within 24 hours.

Since 2009, the Keeping All Students Safe Act (KASSA) has been introduced every Congress, but it has not garnered the support it needs to pass. Restraint and seclusion are serious civil rights issues affecting students with disabilities proportionately. KASSA would create federal standards around the use of these practices, empower families when their rights are violated, and offer a variety of supports and contingency plans to help teachers and school personnel effectively respond to medical and behavioral needs.

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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 thearcwebdev.wpengine.com 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@thearcwebdev.wpengine.com

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Voting and Civil Rights Groups Challenge Inequity in Access to Voting Under Georgia Law

Organizations Seek Emergency Relief to Ensure the Rights of Georgia Voters With Disabilities Are Protected in Time for the 2024 Elections

Washington, DC – Voting and civil rights groups filed an emergency preliminary injunction motion seeking to lift restrictions in Georgia’s anti-voter law, S.B. 202, that target voters with disabilities. These S.B 202 provisions violate the Americans with Disabilities Act and Rehabilitation Act by unjustly burdening—and in some cases completely disenfranchising—Georgians with disabilities and denying them a full and equal opportunity to access and participate in the state’s elections. If granted, the preliminary injunction would help voters with disabilities have equal access to absentee voting in Georgia in the upcoming 2024 elections and allow counties to again provide drop boxes in locations that are accessible.

The American Civil Liberties Union, the American Civil Liberties Union of Georgia, the Legal Defense and Fund (LDF), Southern Poverty Law Center, The Arc of the United States, WilmerHale, and Davis Wright Tremaine LLP represent Georgians with disabilities seeking full political participation and equal access to voting in the state.

The preliminary injunction filed in the federal district court for the Northern district of Georgia in Atlanta asks the court to block two provisions of S.B. 202:

  1. A provision that makes it a felony for friends, neighbors, and even some institutional staff (among others) to help a person with a disability return their absentee ballot.
  2. A provision that requires counties to move ballot drop boxes from easily accessible outdoor locations to indoor locations that are more difficult for many people with disabilities to reach and limits the hours they can be used.

Zan Thornton, co-chair of Georgia ADAPT: “It’s essential that we stop S.B. 202 from infringing on our rights. We need this injunction to preserve our right to vote as disabled citizens of Georgia. In 2022, ADAPT got an avalanche of requests for rides from disabled people across Georgia who couldn’t cast their absentee ballots easily and needed to travel to the polls instead. That dramatic rise in barriers facing disabled voters of Georgia underscores the need for an injunction before 2024.”

Shannon Mattox, state director for The Arc Georgia: “S.B. 202 erects barriers that make it harder for Georgians with disabilities, especially people of African descent, to vote, which is a violation of their civil rights. People with disabilities in Georgia are entitled to equal access in voting and have the right to vote on issues that matter to them. We’ll continue to do everything in our power to ensure the rights of Georgians with disabilities are protected and enforced.”

Devon Orland, litigation director for the Georgia Advocacy Office: “Voting is a fundamental right. These laws were changed without thought for people who experience disabilities and the challenges they face accessing transportation, technology and care. Choosing to make access to a fundamental right harder is not only illegal, it is the antithesis of the foundational pillars of democracy.”

Brian Dimmick, senior staff attorney with the ACLU’s Disability Rights Program: “There are hundreds of thousands of voters with disabilities in Georgia, and many of them face challenges in voting in person and so rely on absentee voting. Instead of making absentee voting easier and more accessible, SB 202 puts new barriers in the way of voters with disabilities trying to exercise their fundamental right. We need the court to protect voters with disabilities by restoring the more accessible voting rules that were in place before SB 202.”

Caitlin May, voting rights staff attorney with the ACLU of GA: “With the passage of SB 202, Georgia has added barriers to voting for people with disabilities rather than making it easier for them to cast their ballots. It is unconscionable that SB 202 drastically reduces options Georgians with disabilities rely on to make their voices heard in elections. Today we’re filing to block some of the policies making the vote inaccessible to many Georgia voters, and hope that we can move towards expanding that access in the future.”

Poy Winichakul, senior staff attorney for voting rights with Southern Poverty Law Center: “S.B. 202 has created barrier after barrier for Georgia voters, restricting nearly every method of voting available to them. These cruel barriers to voting, enacted by the state’s supermajority legislature, especially target people of color and people with disabilities and violate their fundamental rights. We will continue to challenge this anti-voter law until all Georgians have full and equitable access to voting.”

John Cusick, Assistant Counsel, LDF: “S.B. 202 criminalizes aspects of the voting process and otherwise ensures that it’s difficult, if not impossible, for voters with disabilities, who include Black people, from accessing the ballot box. We are grateful that hard-won statutes enforcing civil rights like the Americans with Disabilities Act and Rehabilitation Act exist.”

By mandating that counties place drop boxes inside buildings and close them after business hours, Georgia makes voting an onerous ordeal for some voters with disabilities and completely impossible for others. A preliminary injunction is necessary to ensure voters with disabilities are not denied equal access to absentee voting in Georgia in the upcoming 2024 elections. Here, the Court should require Georgia to stop enforcing the confusing, chilling felony provisions and allow counties to provide accessible drop boxes.

The motion was filed as part of ongoing litigation in AME Church v. Kemp, which challenges S.B. 202 for illegally creating barriers to voting that diminish the voices of communities of color, women, and people with disabilities. Plaintiffs are the Sixth District of the American Methodist Episcopal Church, Delta Sigma Theta Sorority, Georgia ADAPT, and the Georgia Advocacy Office, represented by the ACLU of Georgia, ACLU, LDF, and Wilmer Hale, as well as the Georgia Muslim Voter Project, Women Watch Afrika, Latino Community Fund of Georgia, and The Arc Georgia, represented by SPLC, The Arc of the United States, and DWT.

CONTACTS:
Jackie Dilworth, The Arc, 240-593-5529, dilworth@thearcwebdev.wpengine.com
Rotimi Adeoye, ACLU, 267-221-0828, radeoye@aclu.org
Evan Nowell, SPLC, 470-656-9395, evan.nowell@splcenter.org
Ella Wiley, LDF, 925-819-0555, ewiley@naacpldf.org

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Medicaid Work Requirement in Debt Ceiling Bill Puts People With Disabilities at Grave Risk

Navigating these complex and extreme benefit tests will be particularly difficult for people with intellectual and developmental disabilities.

Today, the U.S. House of Representatives passed H.R. 2811, The Limit, Save, Grow Act of 2023, which includes radical new work requirements for Medicaid enrollees in exchange for lifting the debt ceiling. This Medicaid benefit test will harmfully transform our country’s primary health care for people with disabilities, deepen health inequities experienced by people with disabilities, and do little to boost employment. The Arc urges Senators and the President to reject this extreme benefit test and other harmful cuts contained in the bill as they work towards a deal to lift the debt ceiling.

The bill requires Medicaid beneficiaries to meet an 80-hour per month work-reporting requirement unless they meet an exemption. This doesn’t just apply to new enrollees or people eligible under the Affordable Care Act’s Medicaid expansion provisions – it applies to everyone ages 19-55 receiving Medicaid. Millions of enrollees will be forced to go through an obstacle course and navigate complicated red tape to keep coverage, including many who rely on home and community-based service waivers and Supplemental Security Income. The Congressional Budget Office estimates that 1.5 million adults will lose federal funding for their Medicaid coverage and the bill will cut Medicaid by an estimated $109 billion over the next decade.

“Medicaid is a lifeline for people with disabilities,” shared David Goldfarb, Director of Long-Term Supports and Services Policy at The Arc of the United States. “This policy not only undermines their access to life-sustaining health care and community living, but it also undermines their inclusion in the workforce. Navigating these complex and extreme benefit tests will be particularly difficult for people with intellectual and developmental disabilities, over 45% of which have a co-occurring health condition. In addition, many of the exemptions for the rule are vague and highly subject to the stigmas and biases of those with the power to determine eligibility. Millions of people who rely on these safety net programs will fall through the cracks in a system that is already difficult to grasp – and these changes will compound that problem.”

People with disabilities would need a doctor or other medical professional to deem them “physically or mentally unfit for employment,” which is not a standardized disability determination. Many people with disabilities already face barriers to accessing health care and discrimination from providers, which, if this legislation passes, would now come with the risk of losing Medicaid coverage. There is also an exception for caregivers who give care to an “incapacitated person.” This terminology is vague, subjective, crude, and could extremely limit the definition of caregivers.

All of this chaos and administrative burden comes at the misguided hope that this new benefit test will boost employment opportunities and outcomes. In fact, most adults that utilize Medicaid are working, the majority of which are working full-time. Those who are not working or are working part-time face barriers to employment, such as having a disability or caregiving responsibilities. What’s more, Arkansas had a short-lived work requirement for Medicaid back in 2018, which failed to increase employment and caused 18,000 people to lose coverage. The reality is that having Medicaid supports people’s ability to join the workforce, not hinders it.

The proposal comes at a time when:

  • states are expected to drop millions of beneficiaries due to the end of the Medicaid continuous coverage requirement during the COVID-19 pandemic;
  • over 650,000 people with disabilities desperately wait for home and community-based services, some of them for years;
  • and the nation is experiencing major labor shortages in health and long-term care.

Congress should be focusing on ways to expand access to services, not on cutting Medicaid.

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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. The Arc has 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 and without regard to diagnosis. Visit thearcwebdev.wpengine.com 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@thearcwebdev.wpengine.com

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Comcast & The Arc Partner To Expand Tech Training and Special Education Advocacy for People With Disabilities

Washington, DC & Philadelphia, PA, April 11, 2023 – Comcast today announced that it is expanding its partnership with The Arc of the United States to foster digital and advocacy skills in people with intellectual and developmental disabilities (IDD) and their families. The expansion comes in the form of Comcast providing two new grants to The Arc totaling $710,000. The funding will allow The Arc to establish more Tech Coaching Centers at chapters across the country and offer The Arc@School special education advocacy curriculum to Spanish-speaking families. These programs have already helped over 3,500 people with IDD develop more independence, equity, and opportunities for their future.

“Far too many people with IDD are left behind in our society,” said Ruben Rodriguez, COO and Acting CEO of The Arc of the United States. “A quality educational experience and understanding of technology is fundamental in creating equal opportunities of all kinds. These systems continue to deepen extraordinary disparities among people with IDD, especially underrepresented communities and low-income families. Our continued partnership with Comcast is making opportunity a reality for all people with IDD. It’s chiseling away at our society’s inequities and helping everyone – no matter your disability – build bright futures.”

A first grant of $560,000 will support The Arc’s Tech Coaching Centers at 10 locations across the country. It will also expand the training model to include caregivers and family members of people with IDD to ensure they can support in the implementation of technology across all environments, including assistive technology.

With technology being an increasingly vital part of navigating and participating in today’s plugged-in world, including transportation, employment, recreation, and social interaction, people with IDD face unique barriers to understanding and adopting digital tools. This is exacerbated by a higher rate of poverty and lower overall income among people with IDD. Since 2014, Comcast has supported The Arc’s Tech Coaching Centers, reaching nearly 2,500 people with IDD through 19 chapters and giving them access to devices, services, and training that advance measured outcomes in employment, health, independent living, education, and interpersonal connections.

“We know that digital skills training can open new doors to opportunity and help people living with disabilities gain independence,” said Dalila Wilson-Scott, EVP and Chief Diversity Officer of Comcast Corporation. “That’s why we are proud to continue our long-standing partnership with The Arc to reach even more people with IDD – including their caregivers and families — and to create pathways that can help enrich their lives.”

A second grant of $150,000 will go towards advancing efforts to help marginalized communities better advocate for their education. This investment will allow The Arc to fully translate The Arc@School curriculum into Spanish to better meet this population’s needs and increase access to the content.

Academic achievement and graduation rates for students with disabilities lag far behind their peers, trends caused by inordinate discrimination, suspensions, and isolation within school settings across the country. In 2016, The Arc created The Arc@School, an evidence-based, self-paced online training program designed to help families, educators, and advocates navigate the special education system. Since 2021, Comcast has partnered with The Arc to connect underserved communities to these educational advocacy resources. To date, more than 500 families of color and low-income households have been given free access to The Arc@School, in addition to a facilitation guide, Spanish language overview of the special education process, and cultural competency resources and sections.

These grants were distributed through Project UP, Comcast’s $1 billion commitment to reach tens of millions of people in order to advance digital equity and help create a future of unlimited possibilities.

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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. The Arc has 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 and without regard to diagnosis. Visit www.thearcwebdev.wpengine.com 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 Comcast Corporation: Comcast Corporation (Nasdaq: CMCSA) is a global media and technology company. From the connectivity and platforms we provide, to the content and experiences we create, our businesses reach hundreds of millions of customers, viewers, and guests worldwide. We deliver world-class broadband, wireless, and video through Xfinity, Comcast Business, and Sky; produce, distribute, and stream leading entertainment, sports, and news through brands including NBC, Telemundo, Universal, Peacock, and Sky; and bring incredible theme parks and attractions to life through Universal Destinations & Experiences. Visit www.comcastcorporation.com for more information.

Media Contacts:
Jackie Dilworth, dilworth@thearcwebdev.wpengine.com
Kim Atterbury, k.kim_atterbury@comcast.com

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The Arc and The Coca-Cola Foundation Renew Shared Commitment to Education Equity and Self-Determination

Washington, DC, April 4, 2023 – The Arc is thrilled to announce that a grant from The Coca-Cola Foundation will help us empower families and students navigating the special education process, which continues to be a source of confusion and frustration for countless families across the country.

Too often, students and their caregivers do not know all the supports and services that they are entitled to, or how to successfully advocate for them. With The Coca-Cola Foundation’s support, The Arc is working to change that reality.

The new grant will support dissemination and facilitation of The Arc@School’s Self-Determination Toolkit and Special Education Advocacy Curriculum in five selected chapters of The Arc across the country. Through these resources, students with intellectual and developmental disabilities and their families will expand their knowledge about rights within the special education system and how to receive what they need to thrive in school.

Each chapter will utilize the Self-Determination Toolkit to work directly with students with disabilities and local school systems, with the ultimate goal of leading their own Individualized Education Program (IEP) meetings. Assisting students with disabilities to better understand self-determination is critically important to help them be their own advocate and develop those skills that will be important in their day to day lives now and in the future. Additionally, their parents and guardians will have the opportunity to access the online Special Education Advocacy Curriculum training for free to expand their knowledge on the IEP process and feel empowered to be meaningful partners alongside their children as they advocate for themselves.

“An equitable education is a vital building block of community life for people with disabilities,” said Katy Schmid, Senior Director of National Program Initiatives at The Arc of the United States. “Issues like restraint, seclusion, segregation, and a lack of accommodations don’t just hurt students during their formative years—they can have long-term negative effects socially, psychologically, academically, and sometimes even physically. Inclusion starts in the classroom, and we thank The Coca-Cola Foundation for their continued commitment to making sure students with disabilities thrive in school and beyond.”

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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. The Arc has 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 and without regard to diagnosis. Visit www.thearcwebdev.wpengine.com 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 The Coca-Cola Foundation: Established in 1984, The Coca-Cola Foundation has invested more than $1.5 billion globally to protect the environment, empower women to thrive and to enhance the overall well-being of people and communities.

Media Contact: Jackie Dilworth, dilworth@thearcwebdev.wpengine.com

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New Bill Would Advance Equity & Independence for Millions of Americans With Disabilities

People with disabilities and older adults want to live in their own homes and communities, and they deserve that right just like everyone else. Today, Sens. Bob Casey (D-PA), Chair of the Senate Aging Committee, Tim Kaine (D-VA), Sherrod Brown (D-OH), and Maggie Hassan (D-NH) along with Rep. Debbie Dingell (D-MI) introduced a critical bill – developed with The Arc and other advocates – that will fundamentally change how these populations live full and inclusive lives. The Arc stands unwaveringly behind the Home and Community-Based Services (HCBS) Access Act and urges Congress to pass this long overdue bill.

HCBS waivers were established under Medicaid in the early 1980s, and millions of people rely on it today for daily activities, such as dressing, bathing, meal preparation, taking medication, employment support, mobility assistance, and more. Yet HCBS 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 that strips people with disabilities and older adults of their dignity.

“We know that everyone benefits when people with disabilities are a part of the fabric of their communities, not locked away in institutions or nursing homes,” said David Goldfarb, Director of Long-Term Supports and Services Policy at The Arc of the United States. “Yet this country has treated the independence of people with disabilities as an idea, not a right. One in four U.S. adults live with a disability. These are your neighbors, your relatives, your coworkers, your friends, and they deserve better. We applaud the bill’s sponsors, Senators Casey, Hassan, Brown, and Kaine, and Representative Dingell, for their commitment to helping people with disabilities live with dignity.”

The HCBS Access Act would:

  • Make home and community-based services a mandatory Medicaid benefit and increase funding for these services;
  • Provide grant funding for states to expand their capacity to meet the needs of people who prefer HCBS;
  • Make steps to improve the stability, availability, and quality of direct care providers to help address the decades-long workforce shortage crisis;
  • Provide states with resources so that caregiving workers—who are disproportionately women of color—have stable, quality jobs and a living wage;
  • Provide training and support for family caregivers; and
  • Create better evaluation measures to assess the quality of HCBS being provided.

To meet real-life people who are impacted by the inadequacies of HCBS, watch Susan’s story.

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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. The Arc has 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 and without regard to diagnosis. Visit www.thearcwebdev.wpengine.com 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.

A man in a blue suit with a red tie stands in front of a doorway at the White House. In the background is a blue oval plaque on the wall with white text that reads "The White House" and behind him is an American Flag.

Disability Justice Advocate Neli Latson Joins White House Black History Month Event

Washington, DC – Neli Latson’s story of unjust prosecution and abuse in the criminal legal system was heard at the White House today, bringing attention to the need for better treatment of people with disabilities in interactions with law enforcement.

Latson was invited to speak with high level government officials during a Black History Month event with other young advocates on a variety of social justice issues.A man in a blue suit with a red tie stands in front of a doorway at the White House. In the background is a blue oval plaque on the wall with white text that reads "The White House" and behind him is an American Flag.

“Being at the White House today was not only an honor, it was a dream come true. For years, when I was locked up in solitary confinement, I daydreamed about getting out and telling my story. I wanted to stand up and speak out so that other autistic people, and other Black people, and other Black and autistic people, would not experience the terrible things that happened to me,” said Latson.

In 2010, Latson was an 18-year-old high school student, waiting outside his neighborhood library in Stafford County, Virginia for it to open. Someone called the police reporting a “suspicious” Black male, possibly with a gun. Latson, who has autism and intellectual disability, had committed no crime and was not armed. The resulting confrontation with a deputy who came to investigate resulted in injury to the officer when Latson, whose autism is accompanied by tactile sensitivity, resisted being manhandled and physically restrained. This was the beginning of years of horrific abuse in the criminal legal system. Prosecutors refused to consider Latson’s disabilities, calling it a diagnosis of convenience and using “the R-word,” and rejected an offer of disability services as an alternative to incarceration. Instead, Latson was convicted, sentenced to prison and punished with long periods of solitary confinement, Taser shocks, and the use of a full-body restraint chair for hours on end for behaviors related to his disabilities.

The Arc of Virginia and national disability advocates, including The Arc’s National Center on Criminal Justice and Disability and the Autistic Self Advocacy Network, urged then-Virginia Governor Terry McAuliffe to pardon Latson.  In 2015, he was granted a conditional pardon. Although this released Latson from prison, it required him to live in a restrictive residential setting and remain subject to criminal legal system supervision for ten years. The terms meant Latson could be sent back to jail at any time, causing constant anxiety.

Finally, in 2021, then-Virginia Governor Ralph Northam granted Latson a full pardon, giving him his freedom. Since this development, Latson now lives in his own apartment and receives community-based supports.

“It’s gratifying to have the White House acknowledge the importance of Neli’s advocacy for a society that treats all people with disabilities, particularly Black people, with dignity and respect. The painful truth is that Black people with disabilities live at a dangerous intersection of racial injustice and disability discrimination, and Neli’s life was forever altered by his experience,” said Tonya Milling, Executive Director of The Arc of Virginia, who attended the event with Latson.

“This case galvanized disability rights activists, bringing national attention to overly aggressive and sometimes deadly policing, prosecution and sentencing practices and to the horrifying mistreatment of people with intellectual and developmental disabilities in jails and prisons. Neli’s advocacy is a testament to his strength and desire to make sure no one is treated like he was in that moment that forever changed his life,” said Leigh Ann Davis, Senior Director, The Arc’s National Center on Criminal Justice and Disability.

“I still have a lot of trauma to overcome. I am fearful and it’s hard for me to do a lot of things. At the same time, I am happy that the activism and publicity about my case not only helped me, but also helped to make change for others,” concluded Latson.