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

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

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

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

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

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

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

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

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

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

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

The Arc logo

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

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

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

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

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

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.

The Arc logo

Enough Is Enough. Our Statement on the Club Q Tragedy.

As we grieve yet another mass shooting tragedy in the U.S., thoughts and prayers are not enough. We are heartbroken by the continued harassment, hateful legislation, and exclusion of LGBTQ+ individuals that led to the shooting at Club Q in Colorado Springs, Colorado on Sunday.

Enough is enough. Everyone deserves the same respect, opportunities, and safety. Diverse perspectives, identities, and cultures are something to be valued, not feared and shunned, and are an essential part of the fabric of America. The Arc is no stranger to helping people navigate dehumanizing barriers to simply live openly in their communities, and ALL Americans deserve better. We stand in solidarity with the victims, their families, all LGTBQ+ individuals, and anyone who has experienced gun violence.

As each subsequent shooting makes clear, such as that which occurred two days later at a Walmart in Chesapeake, Virginia, our elected leaders at the national, state, and local levels must do even more to solve the ongoing problem of gun violence that plagues our nation and often targets vulnerable, marginalized communities, including people with disabilities.

 

Close up of the U.S. Supreme Court, focused on the pillars, and doorway.

Amicus Brief Filed in U.S. Supreme Court Case Emphasizes Harms to People With Disabilities

WASHINGTON, DC – Six leading disability advocacy organizations, with the support of Kellogg Hansen, have filed a “friend-of-the-court” brief in the U.S. Supreme Court in support of the estate of Gorgi Talevski, who alleges that the Health and Hospital Corporation of Marion County, Indiana (HHC) abused and neglected him while in a nursing home. The amicus brief explains why it is important that individuals, particularly those with disabilities, have the ability to sue state and local governments when their civil rights are violated under Medicaid and other public programs. The case, Health and Hospital Corporation of Marion County, Indiana v. Talevski, is scheduled to be heard on November 8, 2022.

The amicus brief focuses focuses on the harmful impact the case will have on people with disabilities, who have long faced pervasive discriminatory treatment within American society. People with disabilities and their families have relied on lawsuits to enforce Medicaid’s antidiscrimination protections, including the landmark Olmstead v. L.C. case. If providers of Medicaid services abuse or mistreat beneficiaries or take away or deny their benefits, private lawsuits – regularly brought by The Arc and its partners – are often the only way to hold government entities accountable and ensure people get the life-saving therapies and everyday living support services they need. Many of these lawsuits will no longer be possible if the Court rules in favor of HHC. Full access to Medicaid services and the right to enforce these services are crucial to achieving community integration for people with disabilities. The brief urges the Court to reaffirm the private right of action to enforce Medicaid guarantees and disability rights.

“This case is a large-scale assault on disability rights around the country,” said Peter Berns, CEO of The Arc of the United States. “Medicaid is the primary source of healthcare for people with intellectual or developmental disabilities, the vast majority of whom want to live with dignity in their homes and communities. Protecting their right to private action when such rights are violated would ensure they aren’t unnecessarily institutionalized and prevent the unraveling of antidiscrimination progress set forth by the ADA for over 30 years.”

“The Supreme Court has signaled that it may strike another blow against civil rights in this case,” said Ira Burnim, Legal Director of the Bazelon Center for Mental Health Law. “An expansive ruling could put at risk the ability of individuals to seek relief in federal court for violations of key civil rights statutes prohibiting discrimination based on sex, race, national origin, or disability.”

“Medicaid covers personal attendants and other in-home services and supports that disabled people need to live in the community and participate in society. Enforcement is a critical right,” said Claudia Center, Legal Director of Disability Rights Education and Defense Fund.

“Congress intended that people with disabilities have the right to enforce Medicaid, just as they do Section 504 of the Rehabilitation Act and the Americans with Disabilities Act. The disability community has used this private right of action to enforce vital civil rights protections repeatedly,” said Maria Town, American Association of People with Disabilities President and CEO. “Any decision from the Supreme Court that does not recognize this right would go against Congress’ wishes, decades of legal precedent, and ultimately, put at serious risk the healthcare, community integration, and civil rights that people with disabilities have long fought to secure.”

In Health and Hospital Corporation of Marion County, Indiana v. Talevski, HHC is appealing a ruling by the Seventh Circuit Court of Appeals that Mr. Talevski and his family could sue to enforce his rights under the Nursing Home Reform Act provisions of Medicaid. For 50 years, the U.S. Supreme Court has recognized that people can sue if their rights are violated under safety net programs. The inability to pursue legal recourse will affect millions of people who rely on Medicaid, the Supplemental Nutrition Assistance Program (SNAP), Women, Infants, and Children (WIC), the Children’s Health Insurance Program (CHIP), Temporary Assistance to Needy Families (TANF), and more.

The amici are also concerned that a broad ruling in favor of HHC may undercut individuals’ rights to sue to enforce Title IX of the Education Amendments of 1972 (prohibiting discrimination based on sex), Title VI of the Civil Rights Act (prohibiting discrimination based on race, color, or national origin), and Section 504 of the Rehabilitation Act (prohibiting disability discrimination).

Major health organizations, legal experts, and scholars also uphold the importance of private suits under Medicaid and other federal statutes. Over twenty other amicus briefs have been submitted in support of the defendant, Gorgi Talevski, who is being represented by Ivanka Talevski in his death.

 

 

Media Contacts: 

Jackie Dilworth, The Arc of the United States, dilworth@thearc.org

Jalyn Radziminski, The Bazelon Center, jalynr@bazelon.org

Claudia Center, The Disability Rights Education & Defense Fund, ccenter@dredf.org

Rachita Singh, The American Association of People with Disabilities, rsingh@aapd.com

Steven Schwartz, The Center for Public Representation, sschwartz@cpr-ma.org

 

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 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.

About The Bazelon Center: Since 1972, the Judge David L. Bazelon Center for Mental Health Law has advocated for the civil rights, full inclusion and equality of adults and children with mental disabilities. We envision a society where Americans with mental illness or developmental disabilities live with autonomy, dignity, and opportunity in welcoming communities, supported by law, policy, and practices that help them reach their full potential. The Bazelon Center accomplishes its goals through a unique combination of litigation, public policy advocacy, coalition building and leadership, public education, media outreach and technical assistance.

About The Disability Rights Education & Defense Fund: The Disability Rights Education & Defense Fund (DREDF) is a national, nonprofit law and policy center led by people with disabilities and dedicated to advancing and protecting the civil and human rights of disabled people. As a Parent Training and Information Center (PTI) funded by the US Department of Education, DREDF serves families of children with disabilities and disabled young adults in 33 California counties.

About The American Association of People with Disabilities: The American Association of People with Disabilities (AAPD) is a convener, connector, and catalyst for change, increasing the political and economic power of people with disabilities. As a national cross-disability rights organization, AAPD advocates for full civil rights for the over 61 million Americans with disabilities by promoting equal opportunity, economic power, independent living, and political participation. To learn more, visit the AAPD Web site: www.aapd.com

About The Center for Public Representation: The Center for Public Representation (CPR) is a national public interest advocacy organization assists people with disabilities to control their own lives, to make their own decisions, and to fully participate in their communities. CPR has litigated numerous cases to ensure that people with disabilities can leave nursing facilities and other segregated institutions, and live productive lives in the community.

The Arc logo

Congress Fails to Block Use of Shock on Residents with Disabilities at Judge Rotenberg Center

Washington, DC – Medical and disability leaders have worked for years to ban 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 the Judge Rotenberg Center (JRC), an institution in Massachusetts for people with IDD, still subjects its residents to this extreme practice. We prevailed in 2020, but the Food and Drug Administration’s ban of the use of the device was overturned on a technicality just one year later. The Arc and our advocates have been asking Congress to put an end to this barbaric treatment in the 2022 FDA User Fee Package – and they have failed to stand up for the basic human rights of people with disabilities.

Today, Senate and House leaders announced they are moving a bill forward to fund the FDA for another five years without the ban. Initial versions of this bill that passed the House and the Senate HELP Committee with bipartisan support included the ban on the shock device. The Arc of the United States, its 600+ chapter network, and people with IDD and their families are devastated by this omission.

“This practice is torturous and a violation of basic civil rights. We will continue fighting for justice for JRC’s residents by working with our partners to get a ban into the end-of-year spending package and ensuring every single representative prioritizes the health and safety of people with intellectual and developmental disabilities,” said Peter Berns, CEO, The Arc.

The Arc logo

The Arc Applauds New Effort to Reduce Red Tape in Medicaid and Other Federal Health Programs

WASHINGTON, DC – Today, the Biden Administration proposed a new rule finally updating the eligibility and enrollment processes for Medicaid and the Children’s Health Insurance Program (CHIP). This is welcome news to people with intellectual and developmental disabilities (IDD) and their families, who navigate a complicated bureaucracy to access the health and community-based services they need for their wellbeing and independence.

This announcement is the culmination of efforts by The Arc and many other organizations and individual advocates to raise the struggles that people face with accessing and maintaining eligibility for these critical programs. In addition to covering basic health care, Medicaid also provides home and community-based services, or HCBS, which make life in the community possible for millions of people with disabilities who often need help with things like eating, dressing, personal hygiene, working, and managing health care or finances. CHIP is an important health coverage program for kids with disabilities who don’t qualify for Medicaid.

This rule, if finalized, would standardize and improve eligibility and enrollment policies, such as limiting renewals to once every 12 months, allowing applicants 30 days to respond to information requests, requiring prepopulated renewal forms, and establishing consistent renewal processes across states.

“The bottom line is these proposed changes are going to help a lot of people navigate getting the benefits they need and keeping them. We frequently hear from people with disabilities and their families how incredibly overwhelming it is to get started, and once they have Medicaid or other federal health benefits, maintaining eligibility is a struggle due to red tape. We look forward to working with the Administration to finalize these changes to improve the lives of people with disabilities and their families,” said Peter Berns, CEO, The Arc.

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 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.