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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 at a critical time for the organization, as we chart a course for our future with a new Strategic Framework for the Future of The Arc that focuses on growing our impact and diversifying our movement. We continue to face grave danger from the COVID-19 pandemic, as the health and safety of people with IDD and the direct support professionals who support them to participate in their communities are at risk. Our chapter network has risen to the challenges brought on by this crisis, and they require resources and support to continue to serve their communities. Our grassroots advocacy is critical as this pandemic wears on and federal elected officials have yet to address the needs of people with disabilities, their families, and service providers.

“We are excited to have such a talented group of volunteer leaders who share and are committed to The Arc’s vision that all people with intellectual and developmental disabilities should be valued members of their communities, with the opportunity to realize their full potential and a future that is secure. The passion and dedication of volunteers at the local, state, and national level have propelled The Arc’s civil rights leadership for decades, and this board will continue that legacy and tackle big challenges and opportunities that face us at this point in history,” said Ken Oakes, President, The Arc’s 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 process by which the Committee worked to select the candidates unfolded over the course of a year and included reviewing the board roles and responsibilities, developing a nominating process work plan, reviewing and updating the criteria relevant to board composition, conducting a board composition analysis and establishing recruitment priorities, extensive outreach for potential board candidates, and completing candidate interviews. The slate was then presented at the 2020 annual business meeting.

National Board Members of The Arc


President: Kenneth Oakes, Philadelphia, PA. Ken Oakes has been involved with The Arc since 1976 when he worked at a summer school program for students with IDD. He has served as President of The Arc of Philadelphia and The Arc of Pennsylvania, remaining an active board member of both chapters. His career in special education spans four decades, from a teacher to the Special Education Director in the School District of Philadelphia.  Now retired, he is currently a member of the graduate school faculty at Chestnut Hill College. His work continues in the field of special education, consulting with public and private school special education programs, and compliance monitoring with the state Bureau of Special Education. His time as a member of The Arc’s board includes serving as chair of the Policy and Positions Committee and a member of the Executive, Strategic Planning, and Diversity Committees. Oakes lives in Philadelphia with his husband Ed.

Vice President: Grace L. Francis, Fairfax, VA. Francis is currently an Assistant Professor of Special Education at George Mason University. She formally was the director of the SUCCEED program, a residential college program for students with intellectual and developmental disabilities, at the University of Missouri-St. Louis. Growing up, her blended family experienced numerous challenges, including disability, addiction, and high mobility. She has firsthand experience with broken and disjointed social and educational policies and programs. As a result, her work and research focus on family support policies and practices and improving post-school outcomes for individuals with significant support needs, including competitive employment, postsecondary education, mental health and wellbeing, and community living.

Secretary: Hugh M. Evans III, New Orleans, LA. Evans has been a member of the board of The Arc of the United States since 2010. He has previously served on other non-profit boards that focus on persons with disabilities, such as V-LINC and Catholic Charities of Maryland. Evans has extensive experience in investment management, financial management, and organizational development—working with large companies and small companies and non-profits. He is currently an independent venture capitalist with a concentration on 3D printing. Hugh has a daughter, Sidonie, with Trisomy 21.

Treasurer: Laura Kennedy, Staten Island, NY. Kennedy is a parent of a woman with a developmental disability and has been active in The Arc at the federal, statewide, and local levels for more than three decades. She is Immediate Past President of The Arc of New York and the former president of the New York City Chapter of The Arc of New York. Kennedy formed The Arc New York Historical Archives Workgroup that is currently preserving the organization’s significant collection of disability history. She is a member of the Pennhurst Memorial & Preservation Alliance Advisory Board. She has been an active member of the Willowbrook Task Force, which includes 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 25 years on the board of the Staten Island Developmental Disabilities Council. After 28 years, Kennedy recently retired as Director of the Early Childhood Direction Center, a New York State Education Department funded technical assistance center supporting professionals and parents of young children with disabilities.

Immediate Past President: Frederick Misilo Jr., Northborough, MA. Misilo has devoted 37 years to The Arc’s mission. He has served as the chair of the Policy and Positions Committee. He has served on the Legal Advocacy Subcommittee and on the Ad Hoc Committee on Planned Communities and Other Residential Alternatives for People with IDD. Misilo is also the Immediate Past President of The Arc of Massachusetts and a longstanding board member of that chapter. He has a long history of advocacy within the legislative and executive branches of Massachusetts government, including the position of Deputy Commissioner of the Massachusetts Department of Developmental Services. Misilo is an Officer and Chair of the Trust and Estate Department and Chair of the Elder Law and Special Needs Practice Group at the law firm of Fletcher Tilton PC.

New Board Members

Meghan Burke, Champaign, IL. Burke is an associate professor in the Department of Special Education at the University of Illinois at Urbana-Champaign. Her research examines parent advocacy, sibling caregiving, and families of individuals with disabilities. Meghan has a 26-year-old brother with Down syndrome and has a six-year-old son with a disability.

Jillian Copeland, Rockville, MD. Copeland was an educator, staff trainer, and technology coordinator for Montgomery County Public Schools for several years prior to founding The Diener School in 2007, where she was head of school and on the board of trustees. Copeland’s latest endeavor, Main Street, is an inclusive and affordable apartment building and community center serving people of all abilities. Currently a member of the board of directors for the Jewish Foundation for Group Homes, Copeland also serves on the disability inclusion committee of The Jewish Federation of Greater Washington, The Developmental Disabilities Administration Task Force, and Jubilee’s Housing Task Force. Copeland and her husband Scott are the proud parents of four children.

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.

Jasmine E. Harris, Davis, CA. Harris is a Professor of Law and Martin Luther King, Jr. Hall Research Scholar at the University of California Davis School of Law. Professor Harris is an expert in disability law, antidiscrimination law, and evidence. She writes about the relationship between law and social norms and how laws can be intentionally designed to advance antidiscrimination goals. Professor Harris’ research focuses primarily on these questions in the context of disability law. She has worked in both private and public interest law.

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. Burt is both a father and brother of individuals with special needs.

Stacy Kray, Pal Alto, CA. Kray is an attorney with more than 20 years of transactional and litigation experience at a leading international law firm. She has coordinated her firm’s Bay Area offices pro bono work for more than a decade, and has personally 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 and the Individuals with Disabilities Education Act. Kray is the mother of two teenagers, one of whom has a disability.

Guha Krishnamurthi, Washington, D.C. Krishnamurthi is a lawyer and law professor at South Texas College of Law, focusing on criminal law and criminal procedure. He was raised in Tulsa, OK and is the son of doctors who immigrated from India. In his legal career, Guha has worked for three judges and in private practice in Los Angeles, CA. Guha is passionate about human rights, especially ensuring that those with disabilities can live fulfilling lives as full members of our society.

Russell Lehmann, Reno, NV. Lehmann is an award-winning and internationally recognized motivational speaker and poet with a platform on autism and mental health. A graduate of MIT’s “Leadership in the Digital Age” course, Russell is a council member for the Autism Society of America, the Youth Ambassador for the mayor of Reno, Nevada, and has also sat on the Nevada Governor’s Council on Developmental Disabilities as well as the Nevada Commission on Autism Spectrum Disorders. Lehmann has set his sights on erasing the stigma and stereotypes that come with having a disability.

Meredith Sadoulet, Philadelphia, PA. Sadoulet is a global executive with experience leading human resources and finance functions across media and technology, banking, healthcare, energy, and defense industries. She is currently VP, Talent Experience at Comcast, where she is leading strategy to deliver outstanding candidate and employee experiences. A strong advocate for diversity, inclusion, and equity, Sadoulet chairs national and local committees dedicated to elevating conversations, addressing issues, and advancing solutions with and for people of all backgrounds. She has family members who have autism.

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 2019 Executive of Influence.

Returning Board Members

Dena Gassner, MSW, West Hempstead, NY. Gassner is a PhD candidate at Adelphi University and an adjunct at Towson University. She is very engaged in public policy advocacy on the local, state, national, and international levels. Gassner is an inaugural member to the International Society for Autism Research Autistic Researcher Committee and has published many book chapters and journal articles in her career. Her international advocacy has included multiple presentations around the world and at the United Nations. Since coming to The Arc’s Board of Directors, she has served on the Policy and Positions Committee for six years and as the Chair of the National Council of Self-Advocates for four years. She is a parent of two neurodiverse adults.

Mary Gonzalez, Chicago, IL. Gonzales has been a board member of The Arc since 2014 and serves on the Diversity Committee. She is experienced in public policy and an expert in leadership development. She had a brother with a developmental disability and spent many years organizing to create opportunities for him and others in Chicago. Gonzalez co-founded the Gamaliel Network, a national network of social justice organizations.

Hussain Ismail, San Francisco, CA. Ismail is a Pakistani-American marketing executive that has spent his career helping brands and non-profits tell their stories. Currently, he works on the global brand marketing team at Facebook. Ismail was born in Pakistan and moved to the United States at a young age. He grew up in the San Francisco Bay Area and has a sibling with an intellectual disability.

Chloe Rothschild, Sylvania, OH. Rothschild is a young adult with autism. She is on a mission to make a difference and help teach others about autism by sharing her own experiences. Rothschild advocates through writing, speaking, and social media. She currently serves on various boards in Ohio and has been involved with autism advocacy for over five years.

Mitch Routon, Colorado Springs, CO. Routon is a member of The Arc Pikes Peak Region’s Board and The Arc of Colorado’s Board of Directors. He is a strong self advocate in the Colorado Springs and larger Colorado community.

Karen Shoemaker, Allentown, PA. Shoemaker has served as the Executive Director of The Arc of Lehigh and Northampton Counties since 1999. As a local chapter of The Arc of the United States and The Arc of Pennsylvania, The Arc of Lehigh and Northampton Counties provides advocacy and services and supports to over 1,500 individuals with intellectual and developmental disabilities and their families. Shoemaker has over 34 years of experience in management positions of non-profit disability organizations, with expertise in the areas of programs and services, personnel, development, finance, and administration.

Kathleen Stauffer, Mystic, CT. Stauffer is the Chief Executive Officer of The Arc Eastern Connecticut. She is a recognized leader in public policy advocacy and in individual advocacy for self-advocates. Stauffer has been a member of The Arc’s national Board of Directors since 2014 and has served on the Policy & Positions and Bylaws committees. Currently she is co-chair of the Diversity committee. Prior to her career in the disability sector, she worked as a journalist, photojournalist, editor, and publisher for 30 years. Stauffer is the author/co-author of three books and is currently completing her fourth book.

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 22 years at SAP, Jose 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.

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Adapting to Changing Landscapes: The Creativity and Perseverance of The Arc’s Chapters During COVID-19

Over the last 10 months, the COVID-19 pandemic has undeniably shifted the reality of how we connect with each other. To protect the safety of people with disabilities, their families, and our staff, The Arc’s chapters were forced to rapidly shut down in-person services and shift to a virtual format. Many chapters worried they might not be able to sustain the services and programming that are critical to their communities.

Comcast NBCUniversal recognized that the pandemic threatened to cut off critical local support systems for people with disabilities at a time when they were needed the most and stepped up to quickly provide support. Comcast generously provided grants with flexibility so chapters of The Arc could make the most impact in their fight to safely prevent isolation and support overburdened families. This allowed our chapters to explore new and innovative ways to engage families in the community, at times reaching more people than in the past.

At New Star, Inc. in Illinois and Indiana, the virtual environment brought by the pandemic has provided new opportunities to connect to the community in ways not previously available. For example, the shift has provided 35-year-old Alyssa with the possibility to participate in programming she was unable to before. Before the pandemic, Alyssa couldn’t participate in day programming for years due to her intense medical needs resulting from Angelman Syndrome. When her chapter’s offerings shifted to an online format, it increased her ability to join activities like being read to, exercise programs, socialization with peers, and music therapy. Alyssa’s mother, Renee Valfre stated,

“I have seen her cognition, attending and comprehension skills improve. I find the structure Zoom offers her in a setting at home, that is calm without the stimulus of others’ movements, vocalizations and outbursts, allows Alyssa to focus on the activity. Without virtual programming, Alyssa would have had no instruction or involvement with other individuals during the quarantine.”

A young man stands in his home on a hardwood floor with a few plants behind him and an area rug to his right. A small gray dog naps on a piece of furniture to his left.
David dances with his peers during a virtual Friday dance party

Another New Star virtual program, the Friday dance party, has provided valuable opportunities for social engagement as participants struggle through prolonged isolation at home. Each week, dance party participants work together to pick a theme and songs. On Friday, they gather on video to let loose, do musical trivia, learn new dances, and take turns co-DJing and interacting with peers.

Community member David has been at home and unable to spend time with his friends since March. During this time, his dance parties were limited to a party of one. But with the help of New Star’s Community Day Services and the webcams purchased with their Comcast grant funding, he has been able to join group dance parties and interact with friends while doing what he loves!

David’s mom, Denise Rhodes, couldn’t be happier with how much the program has helped him: “I always say, get up and get active! Virtual dance parties have helped David do that!”

Comcast’s assistance helped open a virtual door for another group The Arc provides services for: parents. Many parents of children with intellectual and developmental disabilities informed The Arc of Aurora in Colorado that schooling their children with Individualized Education Programs (IEPs) at home was challenging. With support from Comcast, The Arc of Aurora created a no-cost online training for parents called Schooling at Home: Your Guide To Remote and Hybrid Learning With IEP Supports. Both parents and educators have enrolled since the training kicked off in September, and that number rises each week. The training delves into how to navigate the special education system and speak up for students in areas like IEPs, procedural rights, and documentation as well as downloadable resources.

“The training aided in clarity for remote learning information and future planning. As a seasoned mom-advocate, I definitely learned things I didn’t know and hadn’t heard!” -Marry Baker, mother of child with IDD

Comcast NBCUniversal’s support extends far beyond chapter funding. They are leveraging their media platforms to raise public awareness of the impacts of the pandemic on people with IDD—including through multiple segments on the TODAY Show, expanding internet access to low-income families and school districts through Internet Essentials, and advancing accessibility with technology like the voice-activated remote control, X1 eye control, and a dedicated service center for customers with disabilities.

As our chapters continue to find creative solutions to the challenges brought forth by COVID-19, they can breathe a little easier knowing that partners like Comcast will continue to have the backs of people with disabilities, their families, and those who support them.

These grants and more are made possible by:

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In Final Days of Trump Administration and in Middle of Pandemic, Federal Officials Approve Cuts to Medicaid in Tennessee

Washington, D.C. – As the Trump Administration wraps up its tenure, officials at the Centers for Medicare and Medicaid Services (CMS) finalized an agreement with the state of Tennessee that will cut funding for the Medicaid program in that state, known as TennCare.

“This decision will harm people with disabilities, low-income families, and older adults in Tennessee, and sets a dangerous precedent across the country.

“It will cut federal money coming in, and fundamentally change the Medicaid program and Federal funding guarantee to the detriment of people with intellectual and developmental disabilities. There will be less federal oversight and accountability for beneficiary protections, and its implementation will have devastating consequences on access to prescription drugs. And to take this action while a dangerous pandemic rages across the country – stretching our health care system, impacting state resources, and harming the economy – is simply unconscionable.

“We are very skeptical about the state’s claim that some of the savings in this restructuring scheme might be used to eliminate the waiting list for services for people with intellectual and developmental disabilities. Right now in Tennessee, there are already challenges with providers because the low reimbursement rates for many services make it difficult to hire and retain qualified workers. Elimination of the waiting list is only relevant if people are getting what they need, when they need it, and cutting funding won’t help. The concept that less money will lead to more innovation and more people getting services is a fallacy.

“The incoming Administration must address the inequities that this block grant will create and ensure that this harmful policy is not replicated in other states.. People with disabilities should not have to endure these cuts now in this public health crisis, or in the future,” 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.

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Amidst Nationwide COVID-19 Surge, Health and Civil Rights Groups Secure Federal Approval of Revised Crisis Standards of Care Guidelines in Texas

Washington, D.C.: Today, amidst an unparalleled rampant spread of COVID-19 infection throughout the country and the looming specter of care rationing as hospitals become overwhelmed, civil rights groups, working closely with two Texas regional health groups and the U.S. Department of Health & Human Services, Office for Civil Rights (OCR) announced the approval of revised crisis standard of care guidelines. Disability and aging advocates—Disability Rights Texas, the Center for Public Representation, The Arc of the United States, and Justice in Aging—worked collaboratively with the North Texas Mass Critical Care Guideline Task Force (NTMCCGTF) and Southwest Texas RAC (STRAC) to ensure their guidelines comply with federal disability rights laws and do not discriminate against people with disabilities and older adults, even when public health emergencies, such as the COVID-19 pandemic, necessitate the rationing of scarce medical resources.

Texas currently has no statewide crisis standards of care policy. The revised guidelines announced today provide the foundation and models for statewide guidelines that could be adopted by the Texas Medical Association and the Texas Hospital Association. They would apply to all of the other regional advisory councils in Texas, amidst surging hospitalizations and rapidly declining ICU capacity that put the lives of people with disabilities and older adults at grave risk. Like earlier resolutions of crisis standards in Alabama, Pennsylvania, Tennessee, and Utah, the guidelines provide concrete, clinical alternatives to discriminatory provisions common in many states’ rationing plans. The following are key changes in the revised policies to avoid discrimination against people with disabilities and older adults:

  • No Exclusions or Deprioritizing Based on Resource Intensity or Diagnosis: An individual can no longer be excluded from, or deprioritized for, medical treatment based on the fact that they might require more time or resources to recover or because of a person’s diagnosis or functional impairment. Rather than making assumptions about a patient’s ability to respond to treatment based solely on stereotypes, medical personnel must perform an individualized assessment of each patient based on the best objective current medical evidence.
  • Resource Decisions Based Only on Short-Term Survivability: Determinations about treatment can only be based on short-term survivability. Since long-term predictions of the outcome of treatment is fraught with speculation, mistaken stereotypes, and assumptions about the quality of life and lifespan of older adults and people with disabilities, they are explicitly prohibited.
  • Reasonable Modifications Required: Hospitals must make reasonable accommodations to the support needs and communication styles of persons with disabilities, and reasonable modifications to the Modified Sequential Organ Failure Assessment (MSOFA)— or other tools that may be used to prioritize access to medical treatment—to correct against the impact prior conditions may have on the assessment of organ failure scoring. Other reasonable modifications, including modifications to no-visitor policies, may also be required to provide equal access to treatment.
  • Reallocation of Personal Ventilators Prohibited: Medical personnel may not reallocate the personal ventilator of a patient who uses a ventilator in their daily life to another patient whom the personnel deem more likely to benefit from the ventilator in receiving treatment.
  • Blanket Do Not Resuscitate (DNR) Policies Prohibited: Hospitals must provide information on the full scope of available treatment alternatives, including the continued provision of life-sustaining treatment, and may not impose blanket DNR policies. Physicians may not require patients to complete advance directives in order to continue to receive services from the hospital.

“The lives of persons with disabilities are not disposable and we deserve medical treatment just as much as anyone else even in a pandemic,” said Laura Halvorson, a client of Disability Rights Texas with muscular dystrophy and respiratory failure. “I use a personal ventilator 24 hours per day. Recently, I was hospitalized and worried that my ventilator would be taken away from me and given to another patient. These new guidelines will prevent this from happening and make me less worried about going to the hospital.”

“COVID-19 cases are rising in Texas and nationwide at unprecedented levels and the threat of care rationing is real and already happening in some hospitals. This resolution makes major progress toward ensuring that people with disabilities have equal access to the care and tools necessary to fight COVID-19 infection,” said Peter Berns, Chief Executive Officer, The Arc. “We will keep fighting for revisions to policies that could mean the difference between life and death for people with disabilities.”

“Persons with disabilities and all persons needing hospital care in the Dallas and San Antonio regions of Texas can now be assured that their right to equal access to life-saving treatment is guaranteed. We now need to do the same for all Texans,” said Steven Schwartz, Legal Director for the Center for Public Representation.

“This collaboration between local health officials, the federal Office for Civil Rights and leading advocates is a great example of government officials listening and responding to the needs and concerns of impacted communities,” said Regan Bailey, Litigation Director at Justice in Aging. “As a result, people needing hospital care in Dallas and San Antonio will not be denied life-saving care because of guidelines that discriminate based on age or disability.”

In addition to working with OCR and other entities to revise crisis standard of care policies nationwide, The Arc, the Center for Public Representation, and Justice in Aging have created resources for stakeholders regarding preventing disability and age discrimination in crisis standards of care.

For more information about today’s resolution, contact:

Kristin Wright, The Arc of the United States or 202-617-3271

Regan Bailey, Justice in Aging or 202-683-1990

Steven Schwartz, Center for Public Representation or 617-285-4666

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Corey Johnson Must Not Be Executed

The Arc and other advocacy groups are urging President Trump to intervene immediately and stop the unconstitutional execution of a man with intellectual disability scheduled to take place in a matter of days. Corey Johnson’s execution, scheduled for January 14, would violate the Constitution and federal law.

Mr. Johnson is a person with intellectual disability. Three nationally recognized experts in intellectual disability have evaluated Mr. Johnson and agree on this diagnosis, but yet, no court has ever heard the evidence to review whether Johnson’s disability bars him from execution. Unfortunately, Mr. Johnson’s trial and post-conviction attorneys failed to conduct a thorough investigation of various avenues of mitigating evidence and did not locate critical information concerning his intellectual disability.

We support Corey Johnson’s clemency petition, asking the Administration to commute his death sentence to life in prison without parole,” said Peter Berns, CEO, The Arc. “For decades, The Arc has advocated for capital defendants with intellectual disability leading to critical Supreme Court precedent prohibiting their execution. It would be a devastating miscarriage of justice for Mr. Johnson to be executed in clear violation of the Constitution.”

Mr. Johnson was raised in poverty and experienced a chaotic, abusive, and tremendously unstable childhood. He had lived in more than ten different homes by the time he was 12 years old and attended nearly a dozen different schools during that same period. Mr. Johnson failed at every level of school.

Mr. Johnson had similar struggles socially. He never learned how to interact with others, to read social situations, to communicate effectively, or to problem-solve. His peers recounted his limited vocabulary and difficulty following instructions. He did not learn the range of skills necessary to live independently as an adult. Expert reports based on interviews with peers, family members, teachers, and other acquaintances throughout Mr. Johnson’s life describe him as “highly gullible and naïve” and lacking the ability to understand the consequences of his actions. As a child, he was frequently teased and largely passive; he followed the lead of others and engaged in the activities those around him pursued.

Mr. Johnson regularly succumbed to peer pressure to engage in risky behaviors and was frequently victimized and easily manipulated by family members and peers. Mr. Johnson’s challenges continued with him into adulthood.

Nearly 20 years ago, in Atkins v. Virginia (2002), the U.S. Supreme Court ruled that the execution of people with intellectual disability is unconstitutional under the Eighth Amendment’s ban on cruel and unusual punishment. In Hall v. Florida (2014), the Court rejected an arbitrary cutoff for IQ scores in making the intellectual disability determination and emphasized the importance of courts consulting clinical standards in their analysis. The Court’s decisions in Moore v. Texas (2017, 2019) strengthened this precedent by emphasizing the need to rely on well-established clinical standards—rather than stereotypes—in making intellectual disability determinations in death penalty cases.

The Arc has deep sympathy for the family and friends of the victims in this case, and supports appropriate punishment of all responsible parties. The Arc does not seek to eliminate punishment of Mr. Johnson or others with disabilities but, rather, to ensure that justice is served and the rights of all parties are protected. The Arc is committed to seeking lawful outcomes for people with intellectual disability and will continue working to ensure that the U.S. Supreme Court rulings on this issue are abided by in jurisdictions across the country.

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Celebrating the Life of the Honorable Richard Thornburgh

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Today, The Arc celebrates the life of Former Pennsylvania Governor and U.S. Attorney General Richard “Dick” Thornburgh, a champion in the disability rights movement who played a crucial role in the passage of the landmark Americans with Disabilities Act (ADA). Mr. Thornburgh died Thursday. He was 88.

Throughout his career, Mr. Thornburgh fought for equal rights for people with disabilities. He was instrumental in forever changing life for people with disabilities in the U.S. and helping to lay important groundwork that we continue to build upon today. The ADA advanced the rights of people with intellectual and developmental disabilities in many critical areas including employment, state and local government services, privately operated public accommodations such as hotels, restaurants, stores, museums, transportation, and telecommunications.

We are grateful for Mr. Thornburgh’s persistent advocacy in support of the ADA and bipartisan spirit demonstrated throughout the passage and subsequent implementation of the ADA. He helped so many understand the importance of empowering people with disabilities by removing barriers and through his leadership.

We send our deepest condolences to his wife Ginny Thornburgh, a lifelong advocate for people with disabilities, and the entire Thornburgh family.