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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

Officers

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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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 & 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

wright@thearc.org or 202-617-3271

Regan Bailey, Justice in Aging

rbailey@justiceinaging.org or 202-683-1990

Steven Schwartz, Center for Public Representation

sschwartz@cpr-ma.org 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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Important Step for Community Living for People with Disabilities: Congress Makes Overdue Investment in Money Follows the Person Program

Last night, Congress passed three years of funding for the Money Follows the Person program. This program provides federal dollars to move people with disabilities out of large congregate settings like institutions and nursing homes, and back into their homes and communities. This is an important step in our decades-long fight to bring people with intellectual and developmental disabilities (IDD) out of institutions to live meaningful, independent lives in the community. 

This news comes after eight short-term reauthorizations, one as short as 7 days, that almost made the program collapse because states couldn’t count on the federal funds and were shutting down their programs, despite the desperate need for the funding due to the pandemic. The last round of funding for the effective program was set to expire on December 20, so it’s future was uncertain in the waning days of the Congressional session. (Citation: Tesla Aktie Dividende)

“Without this investment, more people would continue to be stuck in institutions and nursing homes – and the COVID-19 pandemic has shown how dangerous these settings can be. An enormous barrier for people with disabilities is access to the supports and services necessary to make a life in the community, so Congress did the right thing by investing in this program. It’s a victory, but one harder to celebrate given the fact that once again, Congress absolutely failed to address the dire needs of people with disabilities, their families, and service providers in their latest COVID-19 relief deal,” said Peter Berns, CEO, The Arc.

The Money Follows the Person (MFP) program provides states with 100% federal Medicaid funding for one year to transition people out of institutions and nursing homes, and back to their communities. MFP has moved more than 105,000 seniors and individuals with disabilities out of these institutions, and has helped 44 states 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.

The MFP program supports people to move back home by providing necessary community-based supports like staff to support individuals in their homes, home modifications, and HCBS. The program is also cost-saving for states – longitudinal studies of the program show  20% savings per beneficiary per month for state Medicaid programs and most importantly, better quality of life outcomes for people receiving services in the community instead of institutional care.

“This program will make it possible for more people with disabilities to change their lives, on their own terms. We’ve got a lot of work to do in the new year to continue to help people with disabilities to live in safer settings with the right services for each individual, and the necessary resources for the dedicated staff supporting them. Families are struggling too, and The Arc will continue to lead this fight for equality and justice during and after this public health crisis,” said Berns.

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Shut Out Again: COVID-19 Relief Package Again Excludes Needs of People With Disabilities, Families, Service Providers

After months of hardship and danger from the COVID-19 pandemic, and relentless advocacy by The Arc and advocates across the country, last night Congress passed a COVID-19 relief package without critical funding for people with disabilities to access the services and supports necessary for a life in the community.

As COVID-19 continues to spread nationwide, people with intellectual and developmental disabilities are struggling to access the services they need to continue to live in the community, and their families struggle with balancing work and caregiving responsibilities. Congress should have allocated desperately needed funds to support home and community-based services but they fell short.  They also failed to provide funding for personal protective equipment (PPE) and resources for the workforce that has supported people with disabilities tirelessly throughout this pandemic.

Congress did authorize a second round of smaller stimulus payments, but once again left out many people with disabilities – those who are defined by the IRS to be “adult dependents.” This group was inexplicably cast aside despite bipartisan support for including them.

Congress extended tax credits available for business to cover paid leave, but eliminated rules about when business must provide leave and did not extend the tax credits to cover all caregivers as the pandemic continues. Congress also failed to provide a solution to a COVID-related overpayment issue with Social Security benefits. The needs of people with disabilities, their families, and the workforce that supports them were excluded to honor an arbitrary bottom line.

“It’s unconscionable that Congress ignored the dire needs of people with disabilities, their support staff, and families as this pandemic rages across the country. For months, our leaders have known the consequences of their inaction. People with disabilities are getting infected at higher rates. Support staff are putting their lives on the line day and day out with the protection they need. And families are struggling with it all. Yet in the waning days of 2020, they have shut us out in the cold in COVID-19 relief legislation,” said Peter Berns, CEO, The Arc.

Home and community-based services, or HCBS, make life in the community possible for millions of people with disabilities who often need help with things like eating, dressing, personal hygiene, and managing health care or finances. As COVID-19 spread in congregate settings out of the community, like nursing homes and institutions, HCBS became even more important for health, safety, and independence. Without this critical federal emergency funding, as state budgets continue to take hits due to the pandemic, the HCBS systems will be hit hard.

Through The Arc, almost 150,000 calls and emails have flooded Congress in recent months to demand action for funding for these services, along with the PPE needed by staff to safely deliver these services to people with disabilities. Chapters of The Arc across the country have been scrambling throughout the pandemic to access PPE and other medical supplies. They are in need of resources to cover these costs as well as the funding to pay their direct support professionals fairly for the vital work they do.

“This is not hyperbole – this is life and death for people with disabilities and their support systems. Before, during, and someday after the pandemic, a life in the community is vital for people with disabilities. Congress turned its back on desperately needed funds to support these services, protect the staff doing the work, and pay them for the risks they are taking in this public health crisis,” said Berns.

silhouette of a hand casting a paper ballot into a box

The Arc’s Statement on the 2020 Election

The Arc released the following statement about the 2020 Presidential election:

“This was an historic election given the challenges our nation faces, and voters turned out in record numbers to make their choice about our future. While people with disabilities still face far too many barriers to accessing the right to vote, including physical obstacles and state laws that prohibit some people with disabilities from voting, millions persevered amidst health and safety concerns to exercise their right.  Their votes counted, as did the votes of their family members, friends and supporters.  

“While the election is over, our nonpartisan advocacy continues at the local and state levels, in the halls of Congress, at the Supreme Court, and will continue in 2021 with the Biden Administration.

“We are still in the COVID-19 crisis. This virus has disproportionately impacted people with intellectual and developmental disabilities, their families, and direct support professionals.

“People with disabilities have died from COVID-19. They have faced discriminatory medical policies and practices. Lives have been interrupted, inclusion in the community has been snatched away. Their family members, who were already taking on the majority of caregiving responsibilities, have taken on even more, in many instances disrupting their own lives. And the dedicated direct support professionals have dealt with challenges in protecting health and safety without the necessary protective equipment.

“These impacts are still with us today and will be until our country gets this virus under control and policies in place that meet the needs of people with disabilities, their families, and caregivers. We also must continue to address the many injustices that people with disabilities experience on a day-to-day basis.

“In just a few days, the U.S. Supreme Court will hear a case that threatens to undo all the progress we made with the Affordable Care Act. Access to consistent and reliable healthcare is critical for individuals with disabilities, and the law created much-needed reforms to health insurance, addresses systemic discrimination, and expands coverage.

“We must address the high unemployment rates of people with disabilities and the economic insecurity too many families and individuals face. We have to support families as they struggle with caregiving responsibilities by implementing inclusive paid leave.

“There still is a lot of work to do and, just as The Arc has done throughout our 70-year history, we will not rest until the humanity and needs of people with disabilities are respected,” said Peter Berns, CEO, The Arc.

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The Arc Deeply Troubled by U.S. Supreme Court Voting Rights Decision

WASHINGTON, D.C. – The Arc is deeply troubled by the U.S. Supreme Court decision in Merrill v. People First of Alabama, effectively banning curbside voting in Alabama, a critical accommodation to ensure the health and safety of voters with disabilities during the COVID-19 pandemic.

The lawsuit was filed on behalf of voters with underlying health issues who were concerned about the health risks of in-person voting during COVID-19. Nearly 1.6 million people—almost half of the state’s electorate—are high-risk individuals who are more susceptible to death or serious illness from COVID-19 and are protected as individuals with disabilities under the Americans with Disabilities Act (ADA). People First of Alabama—a group of people with developmental disabilities dedicated to self-determination and autonomy—served as an organizational plaintiff in the lawsuit to fight for the rights of people with disabilities in Alabama to receive the accommodations they need to access the polls.

“The Supreme Court’s decision endangers and disenfranchises voters with disabilities in Alabama who are at higher risk of contracting COVID-19 and experiencing life-threatening complications and death from the virus,” said Peter Berns, CEO of The Arc. “The Arc has been a leader in fighting for the rights of people with disabilities during this pandemic and has long advocated for necessary accommodations that enable many with intellectual and developmental disabilities to exercise their right to vote—a right which has all too often been denied. We are deeply disappointed the Court would deny the option for such an important accommodation days before Election Day, and without legal explanation, thereby depriving more than one million people with disabilities in Alabama of equal access to the polls.”

Because of the risks it poses during the pandemic, Alabama’s in-person voting program is essentially inaccessible to voters with disabilities who face a heightened risk from COVID-19. Curbside voting allows voters to receive and return ballots from inside their vehicles, enabling them to avoid crowds of other voters and limit contact with poll workers, thereby limiting their exposure to the virus. This accommodation is especially critical during COVID-19, but it has also been a widespread practice in nearly thirty states and encouraged by the U.S. Department of Justice even before the pandemic as a reasonable accommodation for voters with disabilities who face a variety of barriers accessing polling places. While Alabama has an absentee voting program, the ADA still requires states to make in-person voting accessible to people with disabilities. Both the Centers for Disease Control and Prevention (CDC) and the Election Assistance Commission have recommended curbside voting as a safer alternative to traditional in-person voting during COVID-19.

The right to vote is fundamental. People with IDD have the right to participate in our democracy, though this right has all too often been denied. It shouldn’t have to come at serious risk to a person’s health or life. In her dissent, Justice Sonia Sotomayor noted that “absentee and in-person voting are different benefits, and voters with disabilities are entitled to equal access to both” and quoted plaintiff Howard Porter, Jr., a Black man in his seventies with asthma and Parkinson’s, who told the district court: “‘[S]o many of my [ancestors] even died to vote. And while I don’t mind dying to vote, I think we’re past that – we’re past that time.’”

Ensuring voting independence, accuracy, and access are key issues for The Arc. Too many polling places and voting technology and practices throughout the country remain inaccessible and disenfranchise voters. To access resources for voters with disabilities during this election season, please visit our Voting page.

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 I/DD 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.

Comcast logo

The Arc Recognizes Comcast NBCUniversal With the 2020 Catalyst Award

The Arc today announced it will honor long-standing partner Comcast NBCUniversal as the recipient of its 2020 Catalyst Award for their collaborative efforts to provide people with disabilities increased access to technology and more independence. The award recognizes businesses, individuals, and other organizations that have made extraordinary contributions toward greater social inclusion and the advancement of the human and civil rights of people with intellectual and developmental disabilities (IDD).

“We are thrilled to award Comcast NBCUniversal with one of The Arc’s greatest honors. The Catalyst Award recognizes Comcast NBCUniversal’s commitment to people with IDD through its efforts in technology, services, and public awareness. In 2020, people with disabilities face unprecedented challenges, amidst a global pandemic. Comcast NBCUniversal continues to step up as an ally and outstanding corporate leader in accessibility, and a champion of inclusion of people with disabilities,” said Peter Berns, CEO of The Arc.

The 2020 Catalyst Award recognizes Comcast NBCUniversal’s expansion of internet access before and during the COVID-19 pandemic, and its advances in accessibility such as voice-activated remote control, X1 eye control, and the company’s dedicated services center for customers with disabilities.

“It’s a fact that people with disabilities are less likely to have access to the internet and the technology necessary to lead more independent lives. It is our belief that everyone should have access to affordable internet, relevant assistive technology and the appropriate digital skills training.  We are honored to both partner and be recognized by The Arc for our collective efforts,” said Dalila Wilson-Scott, Executive Vice President and Chief Diversity Officer of Comcast Corporation.

In recent months, as the nation was abruptly shifting into stay-at-home orders and virtual connection became paramount in the pandemic, Comcast NBCUniversal acted quickly to expand the Internet Essentials high speed internet adoption program for low-income households, with 60-day free service offers to new customers and increasing internet speeds for all subscribers. They are working directly with school districts across the country to help connect families to the internet and provide access to devices for virtual learning. The company’s commitment builds upon their largest-ever expansion of Internet Essentials in 2019, when the eligibility was broadened to all qualified low-income households including those with people with disabilities. And their ongoing efforts to innovate and respond to their customers have resulted in tech advances that meet the needs of people with disabilities, and customer support in American Sign Language.

This year, Comcast NBCUniversal has also made important contributions in raising public awareness of the negative impacts the pandemic is having on people with IDD by including meaningful coverage of key issues on TODAY, MSNBC Live with Craig Melvin, and the NBC News digital platform.

The Comcast NBCUniversal Foundation has also provided flexible funding to community partners including The Arc so we could support immediate needs in our chapter network. Throughout our partnership, Comcast NBCUniversal’s continued and generous support of The Arc’s Tech Coaching Centers to expand digital technology opportunities for people with IDD has changed lives and opened doors for people with IDD. The company has a deep and meaningful commitment to advancing digital equity for people with disabilities, and that encompasses support of other disability organizations such as Easterseals and the American Association of People with Disabilities.

Comcast NBCUniversal is the sole recipient of The Catalyst Award this year.

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

The Arc Reviews Judge Amy Coney Barrett’s Record on Issues Impacting People With Disabilities: What Is at Stake

By Shira Wakschlag, Senior Director, Legal Advocacy & General Counsel

On September 26, President Donald Trump announced his nomination of Judge Amy Coney Barrett of the Seventh Circuit Court of Appeals for a seat on the U.S. Supreme Court following the passing of Justice Ruth Bader Ginsburg. Judge Barrett’s confirmation hearing before the Senate Judiciary Committee began today. The Arc is not taking a position on Judge Barrett’s nomination. As the confirmation process for this lifetime appointment unfolds, here we provide an overview of Judge Barrett’s disability and civil rights record to ensure our members and constituents in the disability community are fully informed about issues that impact people with disabilities.  

Judge Barrett was nominated by President Trump to the Seventh Circuit Court of Appeals on May 8, 2017 and confirmed by the Senate on October 31, 2017. Prior to her appointment to the Seventh Circuit, she was a professor at Notre Dame Law School and a judicial clerk for Justice Antonin Scalia on the U.S. Supreme Court. Given her relatively short time on the bench, this overview includes sources such as law review articles and public speeches, in addition to key opinions from her judicial record. 

Health Care

Background: The Arc has long fought for the rights of people with disabilities to have timely access to high quality, comprehensive, accessible, affordable health care that meets their individual needs, maximizes health, well-being and function, increases independence and community participation, and is aligned with principles of non-discrimination and equity. Through its public policy and legal advocacy work, The Arc has vigorously advocated for the Affordable Care Act (ACA) as essential for people with disabilities in providing affordable and necessary health care, Medicaid expansion, and protections for pre-existing conditions and against discrimination. The ACA also protects against lifetime coverage limits, guarantees coverage of services for mental health and developmental disabilities, and provides access to long-term home-based health care, allowing people with disabilities to live in the community, rather than institutions. The COVID-19 pandemic has only exacerbated healthcare disparities and underscored the critical importance of the ACA given the millions of newly unemployed Americans who would not otherwise be able to afford health insurance, the increase in disabilities and long-term healthcare needs resulting from COVID-19, and the possibility of discriminatory medical rationing prohibited by the ACA.

Judge Barret’s Record: Though Judge Barrett has not ruled in a case involving the ACA, she has been a vocal opponent of the law in a number of public forums. In a Notre Dame law review article discussing various approaches to judicial interpretation of statutes, Judge Barrett criticized the U.S. Supreme Court’s 2012 NFIB v. Sebelius decision upholding the ACA, writing that Chief Justice John Roberts had “pushed the Affordable Care Act beyond its plausible meaning to save the statute. He construed the penalty imposed on those without health insurance as a tax…had he treated the payment as the statute did—as a penalty—he would have had to invalidate the statute as lying beyond Congress’s commerce power.”

In 2015, in King v. Burwell,the U.S. Supreme Court again upheld the ACA, with Chief Justice Roberts writing the majority opinion and noting: “Congress passed the Affordable Care Act to improve health insurance markets, not to destroy them.” Justice Scalia dissented based on his interpretation of the law to prohibit subsidies in states with federal exchanges. Judge Barrett supported Justice Scalia’s interpretation in an interview on public radio. On November 10, the Court will hear oral arguments for California v. Texas, a case in which the constitutionality of the ACA has been challenged, threatening the law’s overall validity. Given Judge Barrett’s previous remarks on ACA-related cases and the shifting makeup of the court, the future of the ACA is under great threat, putting the health care of millions with disabilities in jeopardy.

Federal Disability and Civil Rights Laws

Background: The history of living with a disability in the U.S. has largely been one of discrimination, segregation, and exclusion from education, work, housing, and routine daily activities. Over its 70 year history, The Arc has been instrumental in the enactment of federal disability civil rights laws—including the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act, and the Individuals with Disabilities Education Act—which have helped society make great strides in protecting the civil rights of people with disabilities. The Arc has fought vigorously against a variety of attempts to narrow the scope of these protections. A robust interpretation and enforcement of federal disability and other civil rights laws is critical to ensuring the right of people with disabilities to live, work, learn, and play in the community, free from discrimination.

Judge Barrett’s Record: In 2019, Judge Barrett joined a decision out of the Seventh Circuit Court of Appeals upholding the state of Wisconsin’s open-enrollment program allowing public school students to apply to transfer from their resident school district to a nonresident district with available space. Plaintiffs—parents of students with disabilities who were denied transfers based on their special education needs—challenged the program as discriminatory.  The program allows districts to distinguish between “regular education and special education spaces” and nonresident districts can deny a student’s transfer application if the district lacks the services or space necessary to meet their disability-related needs.

The court found for the state, holding that: “Differential treatment of special-needs students doesn’t make the program unlawful. Federal law ‘forbids discrimination based on stereotypes about a handicap, but it does not forbid decisions based on the actual attributes of the handicap.’ The program makes decisions based on the actual needs of disabled students, so it complies with federal law.” The ADA was enacted to provide a “clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities.” The court’s interpretation that the law is narrowly limited to protecting against “stereotypes” rather than discrimination based on the actual needs of people with disabilities is deeply concerning and inconsistent with the purpose of the statute.

More broadly, outside of the disability realm, Judge Barrett has consistently interpreted civil rights laws extremely narrowly to the detriment of marginalized groups, including people of color, older adults, and the LGBTQ+ community.[1]

Discrimination in Immigration Policy

Background: In 2018, the U.S. Department of Homeland Security announced the “public charge” rule which allows the federal government to deny admission into the U.S. based on the likelihood of an individual relying on public benefits for support. Through public policy and in the courts, The Arc has fought this rule because it discriminates against people with disabilities by allowing the government to deny admission into the U.S. based solely on a person’s disability and the use or expected use of public benefits like Medicaid. It also discourages immigrant families from utilizing critical public services—such as Medicaid, the Supplemental Nutrition Assistance Program, housing assistance, and other important programs—out of fear of harming their immigration status. Overall, the rule unfairly restructures immigration in a way that is detrimental to people based on their disability.

Judge Barrett’s Record: Earlier this year, in Cook County v. Wolf, the Seventh Circuit Court of Appeals upheld a preliminary injunction of the “public charge” rule, holding that it discriminates against people with disabilities by making it more difficult for immigrants with significant disabilities to come to the U.S. because of their increased likelihood of relying on government benefits for support: “The conclusion is inescapable that the Rule penalizes disabled persons in contravention of the Rehabilitation Act.” Judge Barrett dissented, writing that she would vacate the injunction based on her understanding that “DHS’s definition is a reasonable interpretation of the statutory term ‘public charge.’”[2]


[1] See, e.g. Equal Employment Opportunity Commission v. AutoZone (7th Cir. 2017) (denying petition for en banc rehearing of a case in which the lower court ruled for the employer where the EEOC claimed that AutoZone had an unlawful practice of segregating employees by race when it assigned Black employees to stores in Black neighborhoods, which the dissent criticized as an unlawful “separate-but-equal arrangement”); Kleber v. CareFusion Corporation (7th Cir. 2019) (joined majority opinion holding that the Age Discrimination in Employment Act protects only current employees from discrimination due to disparate impact, not outside job applicants. One dissenting judge criticized the opinion, noting: “Wearing blinders that prevent sensible interpretation of ambiguous statutory language, the majority adopts the improbable view that the Act outlawed employment practices with disparate impacts on older workers, but excluded from that protection everyone not already working for the employer in question.”); Amy Coney Barrett, Hesburgh Lecture, Jacksonville University Public Policy Institute, 2016, available at: https://www.youtube.com/watch?v=7yjTEdZ81lI (criticizing Obergefell v. Hodges (U.S. 2015)—Supreme Court decision establishing a constitutional protection for marriage equality for same sex couples—and noting that Title IX should not be interpreted to extend its protections to transgender people.). Judge Barrett also provided paid speeches in 2015 and 2016 to the Alliance Defending Freedom, an organization designated as a hate group by the Southern Poverty Law Center.

[2] For more information on Judge Barrett’s disability record, see The Bazelon Center, “Amy Coney Barrett’s Record on Issues Affecting People with Disabilities”