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

/in /by The Arc

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.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 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@thearc.org

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

/in /by The Arc

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 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

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

/in /by The Arc

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@thearc.org
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

/in /by The Arc

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 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

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

/in /by The Arc

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.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 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@thearc.org
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

/in /by The Arc

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.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 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@thearc.org

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

/in , , /by The Arc

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.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.

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

/in , /by The Arc

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.

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The Arc Announces New Leaders and Members of National Board of Directors

/in /by The Arc

Washington, DC -The Arc has elected a slate of new and returning members of the Board of Directors to lead its work for the next two years. This distinguished group includes professionals in the intellectual and developmental disability (IDD) field and affiliated services, people with IDD, family members, and leaders in the corporate and legal sectors, all of whom are dedicated to promoting and protecting the human rights of people with IDD and supporting their full inclusion and participation in the community throughout their lifetimes.

This Board of Directors takes the helm as we continue to chart a course for our future with the Strategic Framework for the Future of The Arc that focuses on growing our power and diversifying our movement. We are committed to supporting our chapter network as it continues the work on the ground supporting people with IDD and their families, while facing a massive workforce crisis that threatens all of the progress we have made to realize the rights of people with IDD and their families and support them in the community.

“The Arc has been right alongside families and people with disabilities for more than seven decades – and we have a lot of work to do to continue to be the leading grassroots organization for people with IDD. This board of directors has all the skills necessary to seize on the opportunities, and meet the challenges, ahead. I look forward to leading this incredible group as we support the future of The Arc,” said Laura J. Kennedy, President, The Arc’s National Board of Directors.

The Arc’s Board Development Committee completed a rigorous process of preparing the slate of officers and directors for election. The Committee identified and selected a group of candidates that, collectively, has the knowledge, skills and expertise to meet The Arc’s leadership needs. The slate was then presented at the 2022 annual business meeting.

National Board Members of The Arc

Officers

President: Laura J. Kennedy, Staten Island, NY. Since 2018, Kennedy has been a member of The Arc’s Board of Directors where she has served as Treasurer and chair of the Policy and Positions Committee. Laura is a parent of woman with a developmental disability and has been a strong advocate on the local, state, and national level. After 28 years, she retired as Director of the Staten Island Early Childhood Direction Center, a NYS Education Department technical assistance center for families and professionals. Kennedy has been an active board member of both the local New York City chapter of The Arc, and The Arc New York, having served as president of both. While President of The Arc New York, Kennedy formed a workgroup that is currently preserving the organization’s significant collection of disability history. She has been an active member of the Willowbrook Legacy Committee, a collaborative between the College of Staten Island, its Archivist, and the disability community in preserving and recognizing the Willowbrook Consent Judgement and the social justice struggle connected to it. She has also served for over 35 years on the board of the Staten Island Developmental Disabilities Council.

Vice President: Debbi Harris, Eagan, MN. Harris is a Systems Specialist with Family Voices of Minnesota, and is committed to helping shape all civic, community, and health systems to seamlessly include people with disabilities and chronic medical conditions and their families. Harris has personal experience navigating those systems for over 25 years on behalf of her son Josh, who has intellectual and developmental disabilities and complex medical needs. Harris has served on The Arc’s Committee on Diversity and is currently a member of the national Work Advisory Group for Paid Leave for All.

Secretary: Mitch Routon, Colorado Springs, CO. Routon works as an employee of The Arc Thrift store in Colorado Springs, CO.  Routon is a member of The Arc Pikes Peak Region where he served as Treasurer and Vice President. Routon is currently serving as President of The Arc of Colorado’s Board of Directors. He has served on The Arc’s national Board of Directors since 2018.  He is a strong self-advocate in the Colorado Springs area and larger Colorado community.

Treasurer: Burt Hudson, Arlington, VA. Hudson is the Chief Operating Officer of LeadingAge, an association of non-profit aging service and long-term care providers. He is responsible for the association’s human resources, business development, finance, and information technology departments. Hudson is both a father and brother of individuals with disabilities. He currently serves as Treasurer of the board of directors of The Arc of Virginia, an organization he has served since May of 2011.

Immediate Past President: Kenneth Oakes, Philadelphia, PA. Oakes has been involved with The Arc since 1976.  While in college he worked at a summer school program for students with intellectual and developmental disabilities (IDD). The school was founded by the Erie County, PA chapter of The Arc.  This experience set him on a 47-year career in special education and working with and for children and adults with IDD, and a lifetime of volunteer service with The Arc.  He has served as President of The Arc of Philadelphia and The Arc of Pennsylvania and continues as an active member of both boards. Elected to The Arc US Board of Directors in 2016, he has served as Board President, chair of the Policy & Positions Committee, and member of the Executive, Strategic Planning and Diversity Committees.  Currently, he serves as Chair of the Board Development Committee and Co-Chair of the Policy & Positions Committee.  Oakes lives in Philadelphia with his husband Ed.

President, The Arc of the United States Foundation Board: Carol Wheeler, Washington, DC. Wheeler serves as the President of the Board of Directors for The Arc of the United States Foundation. Prior to this role, Wheeler was on The Arc’s national Board and Executive Committee and during the Obama Administration, was appointed to the President’s Committee for People with Intellectual Disabilities. Wheeler’s other volunteer work has included founding and chairing the board of the Washington Ireland Program for Service and Leadership, co-chairing the Advisory Board for N Street Village, founding and chairing the Friends of J.O. Wilson Elementary School, coordinating the DC program for Project Children, chairing the board of the South Africa-Washington Program, and co-chairing the Washington Interfaith Network.

In addition to working on Capitol Hill and in a Cabinet agency, she has served as White House Liaison for Women’s Organizations, Executive Director of the Women’s Campaign Fund, Vice President of Government Affairs at the National Association of Broadcasters, and as a consultant/lobbyist for America’s Public Television Stations.

New Board Members

Frank Adu, North Brunswick, NJ. Adu is the Chief Executive Officer of The Arc Middlesex County. He started with the company over 27 years ago as a direct support professional and advanced into different leadership roles within the organization. Adu is a Certified Nonprofit Accounting Professional and a leadership coach under John Maxwell. He enthusiastically embraces learning and training and strives to grow leaders.

Frank possesses an MBA and is a member of the Steering Committee of the National Conference of Executives of The Arc. He is also a member of the New Jersey Conference of The Arc Executives and former board treasurer of the New Jersey Association of People Supporting EmploymentFirst.

Kim Dodson, Indianapolis, IN. Dodson has over 30 years of experience in the field of public policy and government affairs. In 2015, she was appointed to serve as Chief Executive Officer of The Arc of Indiana. She first joined The Arc of Indiana in 1998 as Director of Government Relations and was moved into the role of Associate Executive Director in 2006. In 2013, Dodson was named CEO of Arc Innovations, Inc. and The Arc Building Corporation. These related entities work with The Arc, focusing on employment opportunities for people with disabilities. Together they have established the Erskine Green Training Institute and Courtyard Muncie at Horizon Convention Center – a landmark project that provides training to people with disabilities to work in the hospitality, food service, and health care fields.

Pablo Juárez, Nashville, TN. Juárez was born and raised in Austin, Texas where some of his earliest jobs were serving people with disabilities. After graduating from the University of North Texas and completing a few summer internships serving in a traumatic brain injury rehabilitation program, Juárez moved to Nashville to join a multidisciplinary brain injury rehabilitation team. He then attended Vanderbilt University for a master’s degree in special education and is currently the Co-director of TRIAD, the autism institute at Vanderbilt Kennedy Center. Juárez has focused on expanding services for children with autism significantly throughout Tennessee. Juárez has previously served as a board member for Tennessee Disability Rights, Tennessee Equality Project, and Tennessee Association for Behavior Analysis and served on multiple workgroups through local, state, and national disability-focused organizations.  He also currently serves as one of the board of directors for the Association for University Centers on Disabilities.

Jamelia Morgan, Chicago, IL. Professor Morgan is an award-winning and acclaimed scholar and teacher focusing on issues at the intersections of race, gender, disability, and criminal law and punishment. Her work examines the development of disability as a legal category in American law, disability, and policing, overcriminalization, the regulation of physical and social disorder, and the constitutional dimensions of the criminalization of status.

Professor Morgan received a BA in Political Science and a MA in Sociology from Stanford University, and her JD from Yale Law School. She served as Associate Director of the African American Policy Forum, a social justice think tank that works to bridge the gap between scholarly research and public discourse related to affirmative action, structural racism, and gender inequality.

Yvette Pegues, Canton, GA. Pegues is academically trained as a Doctor of Education Leadership & Early Childhood Specialists, Doctor of Business Philosophy, and  Microsoft Certified System Engineer. She authored several IBM patents, white papers, and Redbooks in her Engineering and World Wide Program Delivery Manager roles as well as non-fiction books as educator and Diversity Practitioner. She is also a globally recognized and acclaimed DEIB (diversity, equity, inclusion, and belonging) authority. As a disabled executive, she is uniquely qualified and trained to uncover equity gaps and disability barriers that organizations and people leaders cannot see.

Dick Rhoad, Carmel, IN. Rhoad is an accomplished executive with proven success in diverse industries. His leadership experience includes staff development, finance, and operations, with an exceptional record in strategic direction and business development. Rhoad has led large organizations, as well as small businesses. He has qualified credentials in commercial business, the public sector, and nonprofit organizations. For over 25 years, Rhoad has supported organizations serving individuals with intellectual and developmental disabilities. He has been both a continual volunteer and a leader in assisting these organizations to grow and expand their services. Rhoad is currently a member of The Arc of Indiana Board of Directors and serves on multiple committees.

Christopher J. Rodriguez, Phoenix, AZ. Rodriguez has an extensive history advocating alongside and on behalf of individuals with disabilities at the local, state, and national levels. Before becoming the President and CEO of Ability360, Rodriguez served as the Executive Director of Disability Rights Louisiana, Director of Public Policy for National Disability Institute, Director of Governmental Affairs and Media Relations for the Michigan Protection and Advocacy, and Director of Chapter Services at The Arc of Texas.

Rodriguez received his undergraduate degree at the University of California, Berkeley. He earned his graduate degree in Public Affairs at the Lyndon Baines Johnson School of Public Affairs at the University of Texas, Austin. Rodriguez’s passion for advocating comes from his experiences as the younger sibling to a person with significant intellectual and developmental disabilities.

Sumeet Seam, Cabin John, MD. As the chief legal officer at the National Geographic Society, Sumeet Seam leads the organization’s legal and business affairs function and is involved in shaping the Society’s business model and growth strategy. Mr. Seam joined the Society with 20 years of experience successfully developing high-performing legal and risk departments. He served as general counsel for Save the Children, overseeing all legal affairs and key operations functions. He also spent 12 years at Discovery Communications, where he managed the U.S. corporate legal department. As a public speaker, Mr. Seam has addressed board governance; crisis management; enterprise risk management; diversity, equity, and inclusion; and workplace culture.

Kristen Soler, Raleigh, NC. Soler is a successful corporate executive with over 20 years of experience working in consumer products, retail, and auto. Soler started with Advance Auto Parts in 2017 as the Vice President of Human Resources, Supply Chain & Corporate and has since been promoted to the Senior Vice President, Human Resources. As a member of Advance’s transformation team, Soler has focused on recruiting top talent to key leadership positions and frontline retention. She has delivered improved results in inclusion and diversity, the team member experience, and building a stronger employer brand. Soler launched the company’s hiring strategy for people with disabilities across the enterprise, under which they have currently hired 550 team members with disabilities.  Soler is active with other nonprofits including the Triangle American Heart Association, the American Heart Association, and the Tim Tebow Foundation.

Returning Board Members

Meghan Burke, Champaign, IL. Burke is a professor in the Department of Special Education and Education Policy, Organization and Leadership at the University of Illinois at Urbana-Champaign. Her research examines parent advocacy, sibling caregiving, and families of individuals with disabilities. Burke has a 29-year-old brother with Down syndrome and has an eight-year-old son with a disability.

Jasmine E. Harris, Washington, DC. Harris is a law and inequality legal scholar with expertise in disability law, antidiscrimination law, and evidence. She is a professor of law at the University of Pennsylvania Carey Law School. Her work seeks to address the relationship between law and equality with a focus on law’s capacity to advance social norms of inclusion in the context of disability. She consults with federal and state lawmakers and legal advocates on issues of legislative and policy reforms related to disability laws.

Stacy Kray, Pal Alto, CA. Kray is an attorney with more than 20 years of transactional and litigation experience at leading global law firms. She has been involved in class action and other legal proceedings to enforce the civil rights of those with disabilities under federal and state law, including the federal Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA). As a pro bono coordinator, she co-founded a community impact project to educate teens about their legal rights and responsibilities relating to social media use and sexual misconduct that includes modules on hate crimes, legal consent, and bullying (areas of critical importance for the disability community).

Russell Lehmann, Los Angeles, CA. Lehmann is an award-winning and internationally recognized public speaker, thought leader, and poet with a platform on autism and mental health. After Lehmann’s diagnosis at age 12, he became increasingly isolated from the outside world due to the pain and hurt of not being understood. His journey took many twists and turns, and he found solace in writing poetry, participating in athletics, and becoming an advocate. A graduate of MIT’s “Leadership in the Digital Age” course, Lehmann’s name and story are known worldwide, and his workshops, keynote speeches, and performances reach thousands of students, teachers, legislators, policy makers, business leaders, and service providers each year. He was recently recognized by the Autism Society of America as the “2022 Advocate of the Year”.

Meredith Sadoulet, Philadelphia, PA. Meredith Sadoulet is an entrepreneur, former corporate executive, and board director. With an extensive background in human resources, finance, and strategy, she brings diverse leadership across media & technology, financial services, healthcare, energy, and defense industries spanning multiple iconic Fortune 100 companies. Meredith is the Founder and CEO of ProFound, an early stage startup that is building a powerful professional network among leaders with disabilities and accessibility advocates. She has both a personal connection to and professional experience with disability inclusion and advocacy. Meredith is the recipient of a variety of workforce and future of work related awards, including the Society for Human Resource Management (SHRM) & Society for Industrial & Organizational Psychology (SIOP) HR Impact Award and the National Diversity Council Top Talent Officer Award.

Chris Stewart, Birmingham, AL. Stewart became the President/Chief Executive Officer at The Arc of Central Alabama in 2013, after serving as the organization’s Chief Financial Officer since 1999. He is responsible for the oversight of more than 650 employees across 89 locations who manage early intervention, adult day activity, community experience, employment, and residential programs for people with intellectual and developmental disabilities. Stewart has made a tremendous impact on the organization’s fundraising and strategic business operations. Among Stewart’s many accolades, he was named by the Birmingham Business Journal as the 2020 CEO of The Year, and received the 2022 NCE Executive Excellence Award.

Chloe Rothschild, Sylvania, OH. Rothschild is an adult with autism who is on a mission to advocate and teach others about autism from her perspective. Rothschild is one of the co-authors of the My Interoception Workbook for Teens, Adolescents, and Adults. She has served on The Arc’s national Board of Directors since 2018. She also serves on the Ohio Center for Autism and Low Incidence (OCALI) advisory board. Rothschild has been advocating for autism from her perspective for over 10 years. She works as a teacher’s aide at an autism school three days a week.

Faye Tate, Denver, CO. Tate is the Vice President of Diversity & Inclusion at CoBank and the former Director for Global Equality Diversity and Inclusion at CH2M. Tate is well-known in the field of diversity and inclusion, having a proven track record in successfully developing and implementing strategic diversity and inclusion plans for multiple organizations. She is focused on positioning diversity and inclusion as strategic business imperatives. She has a family member with intellectual disability.

Jose Velasco, Austin, TX. Velasco is a Program Director in the Product Engineering Board area at SAP and Autism at Work Ambassador. Velasco’s 30-year information technology career spans the private and public sectors and companies ranging from startups to Fortune 50 enterprises. During his tenure of 24 years at SAP, Velasco has occupied positions in product management, consulting, development, strategy, go-to-market, and diversity functions. In 2016, Velasco launched the Autism at Work Summit, a conference series designed to foster collaboration with the ultimate purpose of improving opportunities for individuals with autism in the labor market. He has two family members with autism.

The Arc logo

Statement on the Killing of Tyre Nichols

/in /by The Arc

Washington, DC – As the public learns more about the killing of Tyre Nichols, The Arc stands in solidarity with his family and friends.

“Yet again, the nation watches another video exposing police violence against a Black man after a traffic stop.  We are horrified to witness the brutalization of an unarmed man. Tyre had Crohn’s disease, which made the blows against his very lean body more damaging. Another dying Black son is crying out for his mother and another Black life ended by people who pledge to protect all of us in our communities.

“We speak out in solidarity with Tyre’s family and friends because so many people in The Arc watch with horror as this happens again, and again – and our minds also go to the fear in all of us that people with disabilities within BIPOC or other marginalized communities can end up in the same deadly circumstances as Tyre, during a routine encounter with police.

“The Arc believes everyone belongs and will advocate tirelessly to make this happen. With their intersecting identities, all members of the disability community are valued, respected, and celebrated for who they are. And that belief is steadfast in solidarity with the Nichols family and friends, whom we offer our deepest sympathies and condolences for their loss,” said Peter Berns, CEO, The Arc.

As the largest community-based organization advocating for and with, and serving, people with intellectual and developmental disabilities (IDD) and their families, The Arc works tirelessly to uphold our vision “for people with IDD to be valued members of their communities, have the opportunity to achieve their full potential and a future that is secure.”

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.

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.