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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 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

/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.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

/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.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

/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.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

/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.

The United States Capitol Building

A Recommitment to Care With the Introduction of the Better Care Better Jobs Act

/in , , /by Pam Katz

Today, Senator Bob Casey (D-PA) introduced a landmark piece of legislation to invest in the country’s care economy and make important improvements to Medicaid home and community-based services (HCBS).

The care workforce is a vital part of community living and inclusion for people with disabilities—and yet the system that supports it continues to be underfunded and complicated to navigate. Hundreds of thousands of people with intellectual and developmental disabilities remain on waiting lists for the services they need to live in and thrive in their communities. The new Better Care Better Jobs Act will address these deficits through several key improvements, including a permanent increase in federal Medicaid funding for eligible states, adding over $300 billion toward expanding and improving access to HCBS.

The proposed updates to Medicaid complement President Biden’s American Jobs Plan—which targets the current care infrastructure crisis and aims to fortify it for the future—by expanding eligibility, requiring coverage for personal care services, expanding supports for family caregivers, addressing the direct care workforce crisis by raising wages, and more.

“People with disabilities deserve the supports to live meaningful and dignified lives in their communities. Their care workers deserve the pay and hours to avoid burnout and turnover. And their families deserve the aid of care workers so they do not have to quit or cut their hours to fill in the gaps. It’s 2023, and we should not have to still be fighting for these basic needs so that everyone has the ability to build the life they want.

“The Arc is, as always, ready to rally support for these much-needed changes and looks forward to making sure Congress knows the difference that they would make in the lives of countless people with disabilities,” said Peter Berns, CEO, The Arc.

The United States Capitol Building

Congress’s End-of-Year Legislation Includes Disability Priorities and Leaves Unfinished Business

/in , , , /by Pam Katz

As Congress wrapped its work for the year, disability advocates pushed for progress on a variety of priorities. Congress has now passed a package that includes some important victories but leaves others out.

One of the biggest wins is an extension of the Money Follows the Person program, which helps people transition out of institutions and nursing homes, and back to their communities.

The Money Follows the Person (MFP) program provides grants to states to transition Medicaid participants from institutions into the community. MFP has moved more than 107,000 seniors and individuals with disabilities out of these institutions and has helped 43 states and the District of Columbia improve access to home and community-based services (HCBS). Medicaid requires states to provide care in nursing homes, but HCBS is optional. The MFP program is then critical because it incentivizes investment in HCBS by providing federal funding for transitional services for individuals who wish to leave a nursing home or other institution. Congress has now extended it through 2027.

“This program makes it possible for more people with disabilities to change their lives, on their own terms. And it proves what people with disabilities and their families know – the opportunities for a life in the community, with the services to make it happen, are game changers. We will continue to relentlessly advocate for major investments in home and community-based services,” said Peter Berns, CEO, The Arc.

Other victories in the bill include:

  • Creating a path for a ban on the use of electric shock devices for behavior modification on people with intellectual and developmental disabilities (IDD). The brutal treatment is widely recognized as cruel, harmful, and ineffective. Yet it’s still used at one institution in Massachusetts.
  • Extending the requirement that states apply Medicaid’s spousal impoverishment protections to HCBS through 2027. A spouse shouldn’t have to live in poverty for their partner to receive services in the community.
  • Expanding ABLE account eligibility. ABLE accounts are tax-advantaged savings accounts for individuals with disabilities. This legislation increases the age of disability onset to access an ABLE account from prior to age 26 to age 46, starting in 2026.

Congress’s action or inaction on certain issues creates unfinished business for The Arc and our advocates to rally around in 2023, including:

  • No action to increase to SSI’s asset limits. Right now, people who get SSI can only have $2,000 in assets, and married couples can only have $3,000.
  • Congress is ending important eligibility and funding improvements tied to the COVID-19 public health emergency. This means states may begin to remove ineligible people from their program starting April 1.

“It’s very disappointing that Congress didn’t take the opportunity to help lift people with disabilities out of poverty, by simply bringing the SSI asset limit out of the 1980s into this century. We will continue to push for this change in the New Year,” said Berns.

Comcast logo

Powerful Partnership Leads to Change: Comcast NBCUniversal and The Arc Continue to Make a Difference Through Digital Skills Training

/in , /by Pam Katz

For people with intellectual and developmental disabilities (IDD), digital access and skills are a critical component of gaining independence. In 2022, The Arc and Comcast NBCUniversal once again teamed up to open digital doors for and with people with IDD.

The Arc and Comcast have a long-standing partnership to do this work. The Arc’s national network of nearly 600 chapters provides vital resources and services to individuals with IDD and their families to promote greater independence and opportunity in the community, and through this partnership, since 2017, more than 2,579 clients have received basic digital skills training at 19 sites around the country.

The program continues to expand what’s possible for people with IDD in their professional and personal lives—giving them the tools to chart their own course, just like we all want to do.

Expanding Self-Determination and Independence

Cathy and Ross, The Arc of Greater Indianapolis (Indiana)

Cathy and Ross each live very independent lives in their community, with their chapter supporting their day-to-day activities and routines. Both deeply wanted more time in their respective homes to unwind and safely manage their own needs without staff hovering around them in case they were needed. As chapter staff member Rita Davis noted, “After you’ve been around others all day, as much as you may like them, there are times when you just want to be alone!” However, both of their families were concerned about their safety in the home with no support staff nearby. Each was coached in how to use tools like the Ring Camera and messaging on their phones to monitor their own environments and reassure/check in with family or chapter staff if they needed assistance. Now, Ross is enjoying greater independence and exploring how to self-administer his own medications, and Cathy can decompress by herself home. Their families are thrilled—and relieved—to have a system in place that will keep them safe while supporting them to live more independently and manage their daily lives.

Courtney, The Arc Southern Maryland

Courtney lives with her mother and has been dependent on her for all her scheduling and transportation needs. Unfortunately, her mother was in a car accident which left them without a vehicle. Courtney has many regularly scheduled appointments that she must get to each week. Through her coaching, she was provided with and taught how to use a smartphone that she could use to reach out to others in her network for rides, find and map out public transportation, and schedule and confirm some of her own appointments with her cardiologist, other doctors, and therapists. Her mother has been able to shift some responsibility to Courtney, and an added benefit of her new phone is the ability to stay better connected to friends and family.

India, The Arc Southern Maryland

India lives with her parents and is nonspeaking, so she has historically relied on various vocalizations and pointing to communicate her needs and desires with her caregivers. Her coaching focused on the adoption of new alternative and augmentative communication (AAC) tools to broaden her options for expressing herself. Currently, India is exploring how to use several AAC apps and for the first time ever, she can communicate using words through Touch Chat, which uses a digital word board with photos. This will impact every single aspect of India’s life and give her the tools to advocate for her needs, build relationships, and direct her own life.

Her father John said, “We can better understand her, and we’ll feel more confident she’ll be ok when she’s not with us.”

Professional Development and Furthering Employment Skills

Rochelle, The Arc of Greater Indianapolis (Indiana)

Rochelle’s initial tech coaching sessions focused on completing online employment applications. To her delight, she landed a job at Arby’s consisting of 20 hours a week cleaning the lobby and dining areas. While she was glad to have the job, she was quickly becoming a little bored with it but did not have the computer skills needed to advance in her role. Her coaching sessions continued as staff worked to expand her digital skillset. As a result, after just two months on the job, she was promoted to the drive-through window to take customer orders on the computer. She also uses their computer system to clock in and out, retrieve pay stubs, and complete mandatory trainings. Where Rochelle was initially nervous about using a computer, she now approaches new digital challenges with an improved sense of optimism and confidence and can continue to progress in her career.

Sidney, New Star Services (Illinois)

Sidney wanted to learn how to program his watch to remind him when it was time to go on breaks and lunch and when to clock out for the day and head home, so that he did not have to rely on coworkers or his job coach to remind him. He has learned how to stop, start, and reset timers on his watch and as a result has become far more independent with his time management on the job. Not having to rely on his coworkers or supervisor to keep him on schedule has been a great source of pride for Sidney and has enabled him to turn his attention to learning new employment-based skills.

Bobby, The Arc of Weld County (Colorado)

Bobby has had no access to technology besides his phone. He only recently restarted attending a day program once per week, and his only social interactions were at work. His coaching focused on not only building skills to explore hobbies like music and coding, but also how to expand his network and build relationships he can maintain outside of in-person activities. He learned about internet safety, using various apps, and using Gmail and Zoom. His newfound digital literacy has opened the door for him to take on leadership roles as well. He is now being considered for a board position with The Arc of Weld County, of which virtual access and reviewing materials via email is required. His wife has also received coaching for her needs and goals and is the longest current employee at the agency!

“When we provide access to digital skills training, we create opportunities and pathways to independence that can be life-changing, especially for those living with disabilities,” said Dalila Wilson-Scott, Executive Vice President and Chief Diversity Officer of Comcast Corporation and President of the Comcast NBCUniversal Foundation. “Partnerships like the one we’re proud to share with The Arc – and as a result, the many lives we’re able to help impact – are at the heart of what drives us each and every day at Comcast. We’re so very honored to continue to grow our work together and help enrich even more lives.”

Comcast’s partnership with The Arc is part of Project UP, the company’s comprehensive effort to address digital inequities and help build a future of unlimited possibilities. Backed by a $1 billion commitment to reach 50 million people, Project UP is focused on connecting people to the Internet, advancing economic mobility, and opening doors for the next generation of innovators, entrepreneurs, storytellers, and creators.