Black and white photograph of justice scales sitting on a desk in a courtroom

Corey Johnson Must Not Be Executed

/in , , , , /by Pam Katz

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

/in /by Pam Katz
A headshot of an older man with glasses, wearing a suit and red tie. He smiles with his mouth closed.

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.

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

/in , , , , /by Pam Katz

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

/in , , , , /by Pam Katz

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.

close up of medical form with stethoscope

The Affordable Care Act: What’s at Risk?

/in , , , , /by Pam Katz

The Affordable Care Act (ACA) made significant progress in expanding access to health care for individuals with intellectual and/or developmental disabilities (IDD). Access to consistent and reliable healthcare is critical for individuals with IDD, and the ACA created much-needed reforms to health insurance, addressed systemic discrimination, and expanded coverage. Yet it will all be at risk on November 10 when the U.S. Supreme Court hears a case seeking to overturn the law. Leading up to the ACA’s day in court, here is a primer on what the ACA does for people with IDD, and what’s at stake if the law goes away.

The ACA:

  • Helps people get health insurance
  • Requires that plans can’t exclude you or charge you more based on preexisting conditions
  • Bans benefits caps (annual and lifetime caps)
  • Requires all plans to cover “essential benefits”
  • Provides financial assistance for low-income people to access healthcare 

Loss of Health Coverage: Without the ACA, millions of adults and children may lose their health coverage, or it may become unaffordable. Millions of families may be left with limited and expensive options, with inadequate coverage. 

Pre-existing Conditions: We are concerned about the possible loss of protections for people with pre-existing medical conditions, including people with IDD. Millions of Americans have “pre-existing” medical conditions that could disqualify them from buying a health insurance policy if the ACA is dismantled. A “pre-existing condition” is any health problem a person has before new health coverage starts. It includes a broad range of common conditions such as diabetes, high blood pressure, cancer, or seizure disorders, including all types of disabilities. 

Without the protections of the ACA, any “pre-existing condition” could mean a person or family buying insurance would pay much more for a policy, if they could get one at all. Before the ACA, an insurer could outright deny people coverage for a specific pre-existing condition, charge them more, cancel a policy after the fact for utilizing needed health care, or deny health insurance coverage overall. Without the ACA, employers could drop coverage for any or all of the conditions they are now required to cover. The Trump Administration publicly committed to “protecting individuals with pre-existing conditions” but there are no specifics on how this would be accomplished.  

COVID Connection: Some of the millions of Americans infected by COVID-19 will have long-term health conditions that are “pre-existing conditions.” This new reality could make it challenging to find health insurance.  And millions of Americans are now also without jobs and without employer-provided health insurance, so the need for affordable care is even greater.

Lifetime and Annual Limits: Before the ACA, lifetime and annual caps were permitted. Even with insurance, this meant enormous out-of-pocket costs or losing your insurance if medical bills cost more than the capped amount. Individuals and families face going without needed treatment or bankruptcy when the caps are exceeded.

Essential Benefits: Before the ACA’s passage, many plans did not cover important services, like maternity care or mental health treatment. The ACA requires all plans to cover 10 “essential health benefits,” including rehabilitative and habilitative services and devices that are vital to people with IDD.

Preventive Care: If we lose the ACA, we also lose preventive care with no out-of-pocket cost. This means adults and children would no longer be able to access important services including immunizations, preventive screenings, well baby and well child visits without cost-sharing. Fewer people may get preventive exams to catch medical issues before they became serious or life-threatening (and more difficult and expensive to treat).

Expanded Coverage for Children until age 26: Prior to the ACA, many health plans removed adult children from their parents’ coverage, regardless of whether they were a student or lived at home with their parents. Under the ACA, plans that offer coverage for children must cover them until they turn 26. It’s been an important coverage expansion for millions of young adult children who have been able to stay on their family health insurance plan.

Affordability Provisions and Loss of Federal Subsidies: The ACA allowed states to extend their Medicaid programs to childless adults earning up to 138% of the federal poverty level. This change has provided coverage to millions of people, including individuals with IDD and other disabilities who were not otherwise eligible for Medicaid. If we lose the ACA, States would be forced to cover the 90% of the cost of the Medicaid expansion that the federal government currently pays, which may be all but impossible in the current economic situation. We may also lose refundable tax credits and cost-sharing assistance that helps reduce the burden on lower-income individuals and families.

Long Term Supports and Services: Several provisions of the ACA were designed to assist states to rebalance their long termsupports systems and invest in the community instead of costly and outdated institutions. States who expanded these options could face a devastating blow if the ACA is struck down. For example, with Community First Choice or 1915(k), 392,7000 individuals in 8 states (California, Connecticut, Maryland, Montana, New York, Oregon, Texas and Washington) would lose services totaling $8.7 billion per year. With respect to the State Plan Home and Community-Based Services Option or 1915(i), 81,000 individuals in 10 states and DC (California, Connecticut, Delaware, DC, Idaho, Indiana, Iowa, Mississippi, Nevada, Ohio, Texas) would lose services totaling $641 million per year.  This change would hurt people with IDD and curtail their opportunity for a full life in their community.

Protecting Civil Rights in Health Care: The ACA also includes the fundamentally important Section 1557 nondiscrimination provision, that prohibits discrimination on the basis of disability (and other protected categories) in health programs and activities.

Impacts on the Health Care System: Overall, a court decision that strikes down the ACA (or important parts of it) could have a broad, harmful impact on the health care system, especially during a pandemic when resources and staff are already strained. It would also increase uncompensated-care costs for hospitals. Health care systems and hospitals that serve disproportionately high numbers of low-income people will be the most at risk, and could be forced to cut services.

The Arc logo

Comcast NBCUniversal and The Arc Team up to Support Local Disability Agencies and Digital Literacy for People With Disabilities

/in , /by Pam Katz

The Arc of the United States and Comcast NBCUniversal today announced a three-year renewal of their national partnership to expand digital technology opportunities for people with intellectual and developmental disabilities (IDD). Comcast NBCUniversal is providing $400,000 to The Arc’s Tech Coaching Centers, which operate their national digital literacy program, as well as chapters that have been negatively impacted by the COVID-19 pandemic.

“We are immensely grateful for Comcast NBCUniversal’s continued support for individuals with intellectual and developmental disabilities and their families, and the work we do to protect their human rights and support their participation in society,” said Peter Berns, CEO of The Arc. “Many of our chapters have been hit incredibly hard during the COVID-19 pandemic. We are truly fortunate to have such a longstanding and steadfast partner in Comcast NBCUniversal in our work to support our chapters and expand access to digital technology that will open up doors online and offline for people with disabilities.”

The Arc’s national network of more than 600 chapters provide vital resources and services to individuals with IDD and their families to promote greater independence and opportunity in the community. With the support of Comcast NBCUniversal, The Arc will continue the important work of connecting its clients with digital skills to enhance their paths to independence through digital literacy training and financial support. Since 2017, more than 1,800 clients have received basic digital skills training at 16 sites around the country. Additionally, for the next year, Comcast will help fund general operating costs for some chapters of The Arc that face financial challenges as a result of the pandemic.

“Through the Tech Coaching Centers and our long-standing partnership with The Arc, we’ve witnessed so many examples of individuals gaining employment, learning digital skills, navigating the internet, and more,” said Dalila Wilson-Scott, EVP & Chief Diversity Officer, Comcast Corporation. “We believe it is vital to continue supporting these efforts to help create economic mobility for people with disabilities.”

About Comcast Corporation

Comcast Corporation (Nasdaq: CMCSA) is a global media and technology company with three primary businesses:  Comcast Cable, NBCUniversal, and Sky.  Comcast Cable is one of the United States’ largest video, high-speed internet, and phone providers to residential customers under the Xfinity brand, and also provides these services to businesses.  It also provides wireless and security and automation services to residential customers under the Xfinity brand.  NBCUniversal is global and operates news, entertainment and sports cable networks, the NBC and Telemundo broadcast networks, television production operations, television station groups, Universal Pictures, and Universal Parks and Resorts.  Sky is one of Europe’s leading media and entertainment companies, connecting customers to a broad range of video content through its pay television services.  It also provides communications services, including residential high-speed internet, phone, and wireless services.  Sky operates the Sky News broadcast network and sports and entertainment networks, produces original content, and has exclusive content rights.  Visit www.comcastcorporation.com for more information.

The United States Capitol Building

The Arc Supports National Coronavirus Commission Act to Assess Response to Pandemic for People With Disabilities

/in , , /by Pam Katz

Today, Members of the U.S. House and Senate introduced the bipartisan National Coronavirus Commission Act of 2020. The proposed legislation seeks to create an independent, non-partisan commission to assess the nation’s preparedness and response to the COVID-19 pandemic. The Commission would also make recommendations to improve readiness in the future. The Commission has a specific charge to review the impact of COVID-19 on people with disabilities.

The Arc supports the bipartisan bill and believes establishing a National Coronavirus Commission is important to ensure that as a country we fully understand the extraordinarily detrimental impacts the pandemic has had on millions of people with disabilities across the country. The pandemic continues to disproportionately harm them. Recognizing where the country’s response has fallen short and committing to doing better in the future is key to truly moving forward in a way that is intentional and inclusive of people with disabilities.

“We are pleased to support this important bi-partisan effort to ensure that we have a full accounting of the National response to the COVID-19 pandemic. We specifically thank Senators Menendez and Collins for ensuring that the Commission is charged with reviewing the health and economic impacts of the pandemic on people with disabilities, a population that is far too often overlooked in the face of crises, this information will be vitally important,” said Nicole Jorwic, Senior Director of Public Policy at The Arc.

We are hopeful the bill will move swiftly through Congress as people with disabilities work to rebuild their lives.

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The Arc on Passing of Justice Ruth Bader Ginsburg and Her Mark on the Disability Rights Movement

/in , , /by Pam Katz

The Arc released the following statement on the passing of U.S. Supreme Court Justice Ruth Bader Ginsburg:

“Often lost in the day to day of life are the big moments in history that make today possible. Today, a life in the community for millions of people with disabilities is possible because of the actions of those who came before them, that led to justice. We mourn the loss of one of those champions, U.S. Supreme Court Justice Ruth Bader Ginsburg, who wrote the opinion in the landmark ruling affirming that unjustified segregation of people with disabilities is discrimination.

“Thirty years ago, the Americans with Disabilities Act transformed the country in important ways, changing expectations for the lives of people with disabilities. Thanks to the work of countless committed advocates, we have taken meaningful steps toward the elimination of discrimination against individuals with disabilities. Two advocates that carried the promise of the law all the way to the Supreme Court were Lois Curtis and Elaine Wilson. Their bravery and refusal to live behind the dark walls of institutions led to the landmark U.S. Supreme Court Olmstead v. L.C. decision in 1999. The case established that unjustified segregation of people with disabilities is discrimination under the Americans with Disabilities Act – and that people with disabilities have a right to live in the community rather than institutions.

“In the opinion, Justice Ginsburg focused on the fact that ‘institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable of or unworthy of participating in community life.’

“This big moment, and her staunch affirmation of the human dignity of people with disabilities and their rightful place in the community of their choice, fundamentally changed the course of the lives of hundreds of thousands of people with disabilities. With this history in our hearts, we will carry on our fight for inclusion and justice for all people with disabilities,” said Peter Berns, CEO, The Arc.

The Coca-Cola Foundation logo

The Arc Announces Grant From The Coca-Cola Foundation

/in , /by The Arc

WASHINGTON – Students with disabilities and their families are experiencing unprecedented challenges and uncertainties in special education, as the COVID-19 pandemic forces schools and families all over the country to try to figure out the best path forward. But long before the pandemic, students with disabilities and their families faced disparities in education and unmet needs in the classroom. The pandemic underscores the need for vast systemic improvements in special education and more resources for students and families.

Today, The Arc is pleased to announce that we have been awarded a grant from The Coca-Cola Foundation to expand our support of students with intellectual and developmental disabilities (IDD) and their families during this critical time. The funding will allow The Arc@School to develop new online resources for students and families to ensure they receive the benefits of public education in the least restrictive setting possible, as mandated by federal and state law.

“We are thrilled to receive support from The Coca-Cola Foundation. It will give The Arc@School the capacity to create new resources that will help students with intellectual and developmental disabilities and their families become empowered during uncertain and challenging times in education, whether they are learning virtually or in the classroom,” said Peter Berns, CEO, The Arc. “The Arc fought hard in the 1960s and 70s to force open the schoolhouse doors and win the right for students with disabilities to attend public schools. But just like other civil rights struggles, the work is far from over. Equal access to education lays important groundwork for people with IDD to have a place in their communities and make meaningful contributions as adults. We thank The Coca-Cola Foundation for understanding the importance of education for people with IDD and for their generous support.”

The Arc@School is The Arc’s National Center on Special Education Advocacy. The Arc@School supports students with IDD (and other disabilities) and their families to successfully navigate the special education system and get the supports and services they need to thrive in school. The program also supports educators to better understand and fulfill their responsibilities toward students and families in the special education system.

A close up of keys hanging in a door.

Eviction Moratorium Welcome Step, Further Action Needed

/in , , , /by The Arc

WASHINGTON – The Centers for Disease Control (CDC) has taken vital action to help millions of tenants, including many people with disabilities. The Arc is encouraged that this week the CDC issued a national, broad moratorium on evictions for nonpayment of rent. The temporary halt on evictions authorized by the Coronavirus Aid, Relief, and Economic Security (CARES) Act has expired. The CDC’s order is crucial to help ensure that people with disabilities who are suffering job loss and economic instability are not forced out of their homes and into homelessness or unsafe living situations during a global pandemic.

“Many people with intellectual and developmental disabilities (IDD) have few financial resources and remain among the country’s poorest. During the pandemic, many people with disabilities and their families face even more economic uncertainty, loss of steady income, and unemployment. It would be deplorable to add homelessness to the list. We are encouraged to see the CDC recognize the potential housing disaster that is upon us,” said Peter Berns, CEO, The Arc. “Keeping people affordably and stably housed during this public health emergency is critical.”

This national moratorium is a welcome step, but we need further action. We continue to call for an extended eviction moratorium into 2021, sufficient emergency rental assistance to help cover back-rent when the moratorium ends, and strengthened foreclosure protections.

“Even before the COVID-19 crisis, people with disabilities and their families faced a national shortage of accessible and affordable housing, particularly low-income renters. Now, the long-term consequences could be dire. Without additional measures to prevent, and not just postpone, evictions and foreclosures, many people will still be at risk of losing their homes, and people with IDD will face even greater obstacles to living in the community rather than segregated institutions and other congregate settings. We must ensure that people with IDD can stay in their homes and remain in the community during a time when our health and safety may depend on it,” said Berns.