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The Arc Announces Departure of Longtime CEO and Leadership Transition

/in /by Pam Katz

The Arc’s Board of Directors announces today that its Chief Executive Officer, Peter Berns, will be leaving the organization upon expiration of his contract in February. Since 2008, Peter has been at the helm of The Arc, the world’s largest community-based organization of and for people with intellectual and developmental disabilities (IDD) and their families. Under his leadership, the organization has charted an ambitious path of growth and modernization as it carries out its mission of “promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes.”

Early in his tenure, Berns took on the task of successfully rebranding the organization and its chapter network, creating a unified identity and messaging that increased its national recognition. He then spearheaded the creation of eight new national programs to address pressing needs in the IDD community on aspects of life ranging from education and employment, to future planning, health, and technology, including the National Center on Criminal Justice and Disability and a new legal advocacy program.

He also steered the organization, its 600 chapters, and the people they serve through difficult times, including legislative threats to Medicaid and to Social Security—programs that make life in the community possible for people with IDD.

During the past three years, Berns has successfully led The Arc through the COVID-19 pandemic and supported chapters to adapt their services in a constantly changing environment.  The Arc helped lead the disability community through the pandemic, mounting successful legal challenges to discriminatory policies in medical care and rallying advocates for investments in home and community-based services.

At the same time and with the future in mind, Berns led the organization through a collaborative process to develop the new Strategic Framework for the Future of The Arc and launched a new Diversity Strategic Action Plan for Advancing Access, Equity, and Inclusion, broadening the organization’s commitment to intersectional advocacy and supports to people with disabilities and their families.

Under his leadership, The Arc greatly expanded its grassroots organizing and mobilization to achieve more power and successfully influence the government policies and practices that so dramatically affect the lives of people with IDD and their families.

As the organization approaches its 75th anniversary, Berns’ most recent endeavor has been to resurrect The Arc of the United States Foundation, with Foundation board chair Carol Wheeler, to build a base of philanthropic support that will ensure The Arc remains a strong advocate for people with IDD and their families for decades to come.

Commenting on his tenure, Berns said: “Since my first year on the job, I’ve heard people with IDD, their parents, and family members, talk about how they depend on The Arc to protect their rights and support them as valued members of their communities. That simple, honest sentiment was all I needed to fuel my passion for this work over the past 15 years.”

Current Board President, Laura Kennedy noted: “The board thanks Peter for all of his accomplishments during his tenure and wishes him well going forward. He leaves The Arc having built a strong foundation for the organization as it now undertakes a national search for new leadership.”

 

 

 

 

 

The United States Capitol Building

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

/in , , , /by Pam Katz

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

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

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

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

Other victories in the bill include:

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

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

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

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

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

/in , /by Pam Katz

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

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

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

 

A gloved hand holding a vaccine vial, with the words COVID-19 in black on a board behind it.

It’s Flu Season: Are You Ready?

/in /by Pam Katz

A young child gets a band aid after a vaccine. She is smiling. This year we are facing a triple threat for flu season: the flu, Covid-19, and Respiratory Syncytial Virus Infection (RSV). RSV is a viral respiratory infection that usually causes cold-like symptoms. Hospitals are currently seeing an alarming increase in pediatric cases of RSV and some are becoming overwhelmed by the surge.

According to research published by the American Association of Pediatrics and the National Institute of Health, babies and children with Down syndrome are at a higher risk of severe complications and even death from RSV. Much like any other respiratory disease, living in a residential care facility or attending day programs can put people with intellectual and developmental disabilities (IDD) at increased risk of exposure. Vaccines for RSV are still in development, but there are important steps you can take right now to protect yourself, your loved ones, and your community during the coming wave of infections.

Getting immunized against this year’s flu strain and staying up-to-date on Covid-19 booster shots are critical actions to stay safe. The CDC has stated that children with intellectual disabilities, cerebral palsy, and other neurologic disorders are at greater risk of severe illness and death from both Covid-19 and the flu. Fighting any one of these viruses can be tough, so it is important to take this step to reduce the likelihood of severe disease or concurrent infections. As the days get shorter and temperatures get lower, remember to make time to get vaccinated. Consult with your doctor if you have any questions.

You can find free flu and Covid-19 vaccines near you at Vaccines.gov.

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The Arc of the US Hires Its First Senior Executive Officer of Development

/in /by The Arc

A man standing outside in front of tall bushes with pink flowers. He has short brown hair and is wearing a navy suit and tieThe Arc of the United States has hired its first-ever Senior Executive Officer of Development: Karim Merchant. Karim will lead a team to develop, implement, and manage fundraising strategies that support The Arc’s longstanding commitment to advocate for and serve people with IDD. He will create and implement a comprehensive growth strategy and fundraising plan to cultivate private and public philanthropic support advancing The Arc’s vision for people with IDD to be valued members of their community who can achieve their full potential and a future that is secure. As The Arc approaches its 75th anniversary, Karim will work to build a stronger base of financial support for the national organization, including relaunching The Arc US Foundation, to assure that its advocacy and services will continue for decades to come and give families caring for a person with IDD peace of mind.

Karim comes to The Arc most recently from the Cancer Support Community (CSC), the largest professionally-led nonprofit network of cancer support worldwide, where he led a dynamic fundraising team focused on growing major and planned gifts, corporate partnerships, and foundation grants. Prior to that, at the Aga Khan Foundation USA, Karim led a fundraising team and hundreds of volunteers across the country to raise nearly $14 million annually to improve the quality of life of communities in Asia and Africa.

Karim is a member of the Board of Trustees of Excelsior University and chairs its Institutional Advancement Committee. He recently represented CSC alongside DC grant makers as a volunteer reviewer in the first grant round of DC’s $95 million health equity fund. Karim has enjoyed building experience in a variety of donor-centered fundraising strategies including major and mid-level giving, planned giving, annual fund, board engagement, corporate sponsorships and partnerships, grant writing, events, volunteer leadership, recurring giving, digital campaigns, point-of-sale fundraising, and direct mail. Before he was a fundraiser, Karim practiced corporate finance law, most recently at the Chicago office of Baker and McKenzie. Karim holds a J.D. from The University of Virginia School of Law and a B.A. in Economics and Spanish from Vanderbilt University.

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The Arc Applauds Federal Student Loan Debt Relief Plan

/in /by The Arc

Washington, DC— With the current moratorium on student loan payments set to expire at the end of this month, the Department of Education and the White House have announced a new plan to tackle student loan debt for millions of borrowers across the country. These new changes will help millions of people with disabilities, if they can access the new programs.

The new changes include $10,000 of debt cancellation for most borrowers ($20,000 if the borrower has Pell Grant loans) and a new income-driven repayment plan for undergraduate borrowers. These new programs may be able to help millions of borrowers with disabilities if the implementation is seamless and accessible to those that are qualified.

Historically, the Total and Permanent Discharge (TPD) program has provided an avenue to discharge federal student loan debt for people with permanent disabilities that limit their ability to work. However, the TPD required borrowers to apply for debt forgiveness and was filled with red tape and complicated, paperwork-heavy processes. Even after the TDP process was improved and automated, eligibility standards continue to be high. Millions who do not meet these standards—including other marginalized groups like those living in poverty and those with language barriers—will need to rely on the Administration’s new relief plan.

“The process for student loan debt relief has long been cumbersome and ineffective for people with intellectual and developmental disabilities, who already must navigate complicated state and federal benefit programs,” said Bethany Lilly, Senior Director of Public Policy for The Arc. “We are relieved that the Administration is taking steps to provide debt relief and make long-needed reforms to existing repayment programs. During this time of unprecedented financial strain, it will be crucially important to ensure that people with disabilities can access these new options.”

The Arc looks forward to working with the Administration to ensure that the new options are as automatic as possible for borrowers and accessible for people with disabilities.

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The Arc Receives Second Award From Verizon to Expand Disaster Preparedness Across the U.S.

/in , /by Pam Katz

For the second year, The Arc of the United States is pleased to receive an award from Verizon to further implement the Building Community Resilience Through Inclusive Disaster Preparedness program. With this funding, The Arc, along with The Arc Muskegon, The H.E.A.R.T. Program, Volunteer NY, and The Arc Nature Coast, will band together to host both online and in-person volunteer events that advance emergency preparedness in communities across the U.S. Participants will center on the perspectives and needs of people with disabilities during a disaster. These service opportunities will be featured on Citizen Verizon Volunteers, the company’s employee volunteerism portal, introducing V-teamers to The Arc’s constituents, and fostering opportunities for both communities to learn about each other.

Through the program, Verizon employees will again be offered a number of volunteering options, such as conducting mock 911 calls, creating no-sew blankets to shield against long winter nights, participating in letter-writing campaigns, creating disaster kits, and much more.

“The ongoing COVID-19 pandemic highlights the urgent need for communities, organizations, and businesses to strengthen their emergency plans so that people with disabilities are never left behind when disaster strikes. Verizon’s support allows The Arc to continue shaping the conversation around disaster preparedness, centering on individuals with disabilities. We are grateful and look forward to partnering with Verizon again,” said Peter Berns, CEO of The Arc.

A man stands at the front of a classroom with children sitting at desks listening in the foreground

The Arc Partners With Comcast NBCUniversal to Increase Access to Culturally Competent Special Education Services for Students of Color with Disabilities

/in , , , /by The Arc

Washington, D.C. – As special education students face the continuing challenges of the COVID-19 pandemic, The Arc is pleased to announce that it has been awarded a $200,000 grant from Comcast NBCUniversal to connect families of color and families from low-income households with students with disabilities to valuable educational advocacy resources. The grant will also help to ensure The Arc@School’s continued growth and success in assisting students and families for many years to come.

To expand support for students with intellectual and developmental (IDD) disabilities, the organization will provide 250 scholarships for The Arc@School’s Advocacy Curriculum. The Arc will also engage in a cultural competency review of its current curriculum to inform the next iteration, increase accessibility for families and improve the impact on student education. With Comcast NBCUniversal’s support, The Arc@School aims to disseminate special education resources to at least 350,000 people in 2022.

“We are proud of our long-standing partnership that supports The Arc in its mission to provide resources for all students with disabilities – and their families – so they can live independently and actively participate in their communities,” said Dalila Wilson-Scott, EVP and Chief Diversity Officer, Comcast Corporation.

Far too many kids are being left behind during the pandemic, particularly students with disabilities from marginalized groups. The Arc fights for all students to receive the benefits of public education in the least restrictive setting possible, as mandated by federal and state law. The Arc@School program supports families of students with IDD to successfully navigate the special education system and get the supports and services they need to thrive in school.

“Equal access to education for all students is an undeniable right in this country. The Arc is committed to nothing less for students with intellectual and developmental disabilities. We are thankful for Comcast NBCUniversal’s continued support of our education advocacy and broad impact on the program, especially during this time of constant uncertainty in education. Families of all backgrounds need quality support in navigating special education – and we must ensure that we provide these resources in a way that reflects the unique experiences among us,” said Peter Berns, Chief Executive Officer of The Arc of the United States.

About Comcast Corporation

Comcast Corporation (Nasdaq: CMCSA) is a global media and technology company that connects people to moments that matter. We are principally focused on connectivity, aggregation, and streaming with 57 million customer relationships across the United States and Europe. We deliver broadband, wireless, and video through our Xfinity, Comcast Business, and Sky brands; create, distribute, and stream leading entertainment, sports, and news through Universal Filmed Entertainment Group, Universal Studio Group, Sky Studios, the NBC and Telemundo broadcast networks, multiple cable networks, Peacock, NBCUniversal News Group, NBC Sports, Sky News, and Sky Sports; and provide memorable experiences at Universal Parks and Resorts in the United States and Asia. Visit www.comcastcorporation.com for more information.

The Arc advocates for and serves people wit¬¬h intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of nearly 600 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.
Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

A woman with shoulder length curly brown hair wearing a blue turtleneck sweater and tortoise frame glasses.

The American Constitution Society Awards 2022 David Carliner Public Interest Award to Shira Wakschlag, The Arc’s Senior Director of Legal Advocacy

/in , /by The Arc

Washington, D.C. – The Arc and the American Constitution Society (ACS) are proud to announce that The Arc’s Senior Director of Legal Advocacy and General Counsel, Shira Wakschlag, is the recipient of the 2022 David Carliner Public Interest Award. This prestigious award honors a mid-career public interest attorney whose work best exemplifies David Carliner’s legacy of fearless, uncompromising, and creative advocacy on behalf of marginalized people.

“I am tremendously honored to receive this award,” said Wakschlag. “I share it with my colleagues at The Arc and around the country who I have the privilege of collaborating with and learning from every day. In the face of ongoing existential threats to our fundamental civil rights, it is critical that disability be part of the conversation as we fight these injustices. I look forward to opportunities to partner with the ACS community in this work to ensure that people with disabilities receive needed supports and accommodations to obtain equal access to society and thrive in all aspects of life.”

Wakschlag will accept the David Carliner Public Interest Award in person and deliver remarks at the ACS National Convention that will take place June 16-18, 2022 at the Marriott Marquis in Washington, D.C.

Wakschlag is an extremely accomplished and widely respected leader in the area of disability civil rights law. She has led The Arc’s national disability rights litigation practice since 2014, expanding it into a wide-ranging and high impact program that advances the rights of people with intellectual and developmental disabilities under federal disability and civil rights laws and the U.S. Constitution. Her work at The Arc has also been instrumental in highlighting and combatting intersectional injustice in a range of areas, including voting rights, special education, the criminal legal system, and medical discrimination.

“I am proud to announce Shira Wakschlag as this year’s recipient of the Carliner Award,” said ACS President Russ Feingold. “ACS is committed to fighting for a just legal system that addresses the harm done to historically marginalized people. Shira has spent her career advocating for people with disabilities, safeguarding their voting rights, and advancing community-based solutions, all while also fighting against medical discrimination and the exclusion of students with disabilities in schools. I commend Shira and The Arc for their work to uphold the Constitution and ensure that the law is a force for protecting our democracy and the rights of all.”

Wakschlag has fought for inclusion for students with disabilities—disproportionately students of color—who are too frequently relegated to separate programs and even separate schools where they are isolated from non-disabled peers and receive an inferior education.

Wakschlag was also instrumental in challenging discriminatory state and hospital crisis standard of care policies at the onset of the pandemic, working with state and national partners to file fourteen federal complaints with the Office for Civil Rights (OCR) at the U.S. Department of Health & Human Services. These efforts led to favorable resolutions in several states making clear that federal law requires states and health care providers to ensure patients with disabilities have equal access to life-saving medical care.

“The Arc is honored to see Shira receive this well-deserved recognition from the American Constitution Society. Shira’s passion and commitment to advancing the civil rights of people with disabilities through legal advocacy has empowered disabled lives and exponentially elevated The Arc’s legal impact,” said Peter Berns, CEO of The Arc of the United States. “Shira sets extremely high standards in legal advocacy in uplifting The Arc’s mission to promote and protect the human rights of people with intellectual and developmental disabilities and actively support their full inclusion and participation in the community throughout their lifetimes. We applaud Shira and thank ACS for their support.”

Wakschlag has also worked to advance the rights of people of color with disabilities who are unjustly entangled in the criminal legal system, advocating for community-based services and treatment as alternatives to incarceration. She is currently working to challenge voter suppression laws that disenfranchise voters with disabilities and voters of color, denying them access to democracy.

“Shira’s work on behalf of the disability rights movement at large is most deserving of recognition with the Carliner Award. She is an extraordinarily gifted lawyer. Her tireless efforts have not only advanced the interests of people with disabilities but have highlighted and elevated the intersection of disability civil rights with critical issues of our time, including racial justice, voting rights, health care disparities, long-term care and supports, decarceration, capital punishment, and equitable access to housing, education, and other community resources – with added benefit for all,” said University of Pennsylvania Professor of Law Jasmine Harris, chair of The Arc’s Legal Advocacy Committee and member of The Arc’s Board of Directors and Executive Committee.

In addition to Wakschlag, Atteeyah Hollie, Deputy Director of the Southern Center for Human Rights, will be honored as this year’s Finalist. The honor is in recognition of her work challenging the denial of counsel to lower-income Georgians, while fighting against wealth-based detention, and inhumane prison conditions. Visit ACS’s 2022 National Convention web hub for more information on events, speakers, and COVID protocols.

AMERICAN CONSTITUTION SOCIETY

ACS believes that the Constitution is “of the people, by the people, and for the people.” We interpret the Constitution based on its text and against the backdrop of history and lived experience. Through a diverse nationwide network of progressive lawyers, law students, judges, scholars, and many others, we work to uphold the Constitution in the 21st Century by ensuring that law is a force for protecting our democracy and the public interest and for improving people’s lives. For more information, visit us at www.acslaw.org or on Twitter @acslaw.

THE ARC OF THE UNITED STATES

The Arc advocates for and serves people with intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of nearly 600 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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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In Solidarity With the Community of Uvalde, Texas

/in , , /by Pam Katz

The Arc released the following statement in the aftermath of the mass shooting at Robb Elementary School in Uvalde, Texas.

“We are so saddened by the events that occurred yesterday at Robb Elementary School in Uvalde, Texas.  The families, and the community of Uvalde, will forever be impacted by the loss of these young children and their teachers.

“These tragedies are creating an environment where people no longer feel safe in their schools, places of worship, grocery stores – the communities where they live, work, and play.  And we are deeply concerned that Congress’ failure to act to prevent this violence is undermining basic human rights.

“The senseless violence has to stop. Our elected leaders must put aside differences to comprehensively address the growing problem of gun violence that affects all of us, including people with disabilities and their families.”