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In Solidarity With the Community of Uvalde, Texas

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.”

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Scientists Say FDA’s Refusal to Ban Neurotoxic Chemicals from Food Processing/Packaging Threatens the Nation’s Children with Lasting Harm.

Prenatal exposures to phthalates are linked to learning and behavioral problems including attention disorders; exposures are higher in children of color.

Washington, DC — Leading scientists and health professionals of Project TENDR say FDA’s refusal to ban phthalates from food processing and packaging flies in the face of rapidly accumulating evidence that phthalates do lasting harm to children’s brains. Contrary to this evidence, FDA today denied two petitions to eliminate the use of phthalates in food packaging and food production equipment, while acknowledging that its own assessment of phthalates’ safety for use in food-contact materials is out of date.

Though FDA simultaneously granted an industry petition to abandon certain food contact uses of phthalates, its decisions leave numerous authorizations in place that perpetuate phthalate contamination of the food supply.

FDA’s failure to grant the petitions poses an egregious and entirely preventable threat to expectant parents, infants, and children. In 2021, Project TENDR researchers published a seminal article in American Journal of Public Health identifying phthalates as neurotoxic chemicals that increase children’s risks for learning, attention, and behavior disorders.

Starting in 2016 and as recently as April 2022, Project TENDR experts submitted scientific comments to FDA in strong support of two petitions filed by the Natural Resources Defense Council, Center for Science in the Public Interest, Center for Environmental Health, Center for Food Safety, Clean Water Action, Consumer Federation of America, Earthjustice, Environmental Defense Fund, Improving Kids’ Environment, and Learning Disabilities Association of America, requesting that FDA eliminate its approval of ortho-phthalates as food additives in food contact substances.

While nearly everyone – including pregnant women – has detectable levels of phthalates in their bodies, Black and Latina women have higher exposure to phthalates than White women, independent of income level. Phthalates readily transfer from the mother to the fetus. In addition to lasting impacts on children’s brains, phthalates have long been known to harm reproductive tract development in male babies.

“There are dozens of studies finding adverse associations between phthalate exposure and multiple aspects of brain development, including effects on behavior, cognitive function and even brain structure, says Dr. Stephanie Engel, University of North Carolina at Chapel Hill Gillings School of Global Public Health, who in 2021 founded an NIH and EPA-funded brain imaging center to identify changes resulting from phthalates exposures. “There is no compelling rationale to continue waiting for more evidence when phthalates can be eliminated now from food packaging and processing.”

“FDA’s failure to act to get phthalates out of food is creating a serious public health problem of great magnitude,” says Dr. Ami Zota, George Washington University Milken Institute School of Public Health and an internationally recognized expert on the racial and socioeconomic disparities in phthalates exposures and health effects. “Until FDA reverses course, the health burdens from phthalate exposure in food will continue to disproportionately harm people of color, people of low wealth, and babies and young children undergoing critical periods of growth and development.”

Dr. Russ Hauser, Harvard T.H. Chan School of Public Health and Harvard Medical School, and co-author of the 2014 Chronic Health Advisory Panel (CHAP) report on phthalates that was used by the Consumer Product Safety Commission (CPSC) to justify banning certain phthalates from toys, states: “Eight years after the CPSC acted to protect children from phthalates in toys, the FDA still refuses to protect children from phthalates in food. No pregnant woman or child should unknowingly be ingesting phthalates with their breakfast, lunch or dinner.”

Experts available for interview:

Stephanie M. Engel, PhD, Professor, Gillings School of Global Public Health, University of North Carolina, Chapel Hill

Dr. Engel’s research considers the impact of environmental exposures and innate susceptibility factors on adverse pregnancy outcomes and neurodevelopmental impairment in children. Her research has identified a link between prenatal phthalates exposures and increased risk of attention disorders in children. Dr. Engel is Director of the UNC Center for Early Life Exposures and Neurotoxicity, and Deputy Director of the Center for Environmental Health and Susceptibility. In 2021, she was awarded major EPA and NIH grants to investigate the developmental impacts of neurotoxic chemicals. As part of Project TENDR, Dr. Engel is lead author of the seminal article, “Neurotoxicity of Ortho-Phthalates: Recommendations for Critical Policy Reforms to Protect Brain Development in Children,” American Journal of Public Health, February 2021.

Ami Zota, ScD, MS, Associate Professor, Milken Institute School of Public Health, The George Washington University:

Dr. Ami Zota is an internationally recognized expert in environmental health science and environmental justice. Her scientific research focuses on how the public is exposed to phthalates and the disproportionate harm phthalate exposure causes to people in certain populations, such as Black and Latina women of reproductive age. Her research has increased awareness of the link between fast food and phthalate exposures among the scientific community, policy makers, and the general public. Most recently, her research group found widespread detection of phthalates and other plasticizers in popular fast food meals, demonstrating that phthalates leach from processing equipment and packaging into food. She is a co-author of the 2021 Project TENDR phthalates article in AJPH.

Russ Hauser, MD, ScD, MPH, Frederick Lee Hisaw Professor of Reproductive Physiology, and Professor of Environmental and Occupational Epidemiology, Harvard T.H. Chan School of Public Health; Professor of Obstetrics, Gynecology and Reproductive Biology, Harvard Medical School

Dr. Hauser’s research focuses on the effect of environmental chemicals on male and female fertility, pregnancy outcomes and children’s health. He led a 20-year NIH-funded study of the effects of endocrine disrupting chemicals, including phthalates, on male and female reproductive health. Dr. Hauser is currently conducting an NIH-funded study on the effect of maternal and paternal exposures to environmental chemicals on children’s health, growth, and neurobehavior.  Dr. Hauser was co-author of the 2014 Chronic Health Advisory Panel (CHAP) report on phthalates that the Consumer Product Safety Commission (CPSC) used to ban certain phthalates from toys. He is a co-author of the 2021 Project TENDR phthalates article in AJPH.

Project TENDR which stands for “Targeting Environmental Neuro-Development Risks,” is a collaboration of leading scientists, health professionals, and advocates protecting children’s brains from toxic chemicals and pollutants. Project TENDR is a program of 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 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.

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The Arc Rejects Hate, Honors Lives Lost and Wounded Survivors of Racially Motivated Shooting in Buffalo, New York

Washington, D.C. – The Arc released the following statement in reaction to the racially motivated mass shooting at a grocery store in Buffalo, New York.

“We are horrified by the racially motivated mass shooting in Buffalo, New York Saturday. We reject hate and no one should be in danger of being murdered because of the color of their skin. The motives and actions of the shooter, and the racist and antisemitic white supremacist conspiracy theories he, and those who sympathize with him, have espoused are sickening.

“Our country is experiencing an undeniable and very long crisis. White supremacy has been woven into the fabric of our existence for centuries, and despite incremental progress –we clearly have a long way to go. We must take down all systems of oppression that threaten and stand in the way of race equity and inclusion.

“The disability community includes individuals who are Black, Indigenous, and people of color (BIPOC) and we are in allyship with the Black community in Buffalo and everywhere. We refuse to stay silent when time after time, racist extremists in our country terrorize people of color, a deep-rooted sickness that should anger us all.

“We are all people. Everyone belongs. We honor the people who lost their lives and those wounded in Buffalo at the hands of this evil. We reject racism and hate, with the strong resolve to help tear down these walls of racism, white supremacy, and oppression,” 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 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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Intersection of Disability & Race Explored at Free, DEI Virtual Conference: Civil Rights Advocate Kimberlé W. Crenshaw & Disability Activists to Present

BROOKVILLE, N.Y. – As issues at the intersection of disability and race remain under-recognized due to a lack fluency or awareness, nonprofit agencies AHRC Nassau and The Arc of the United States are responding with a free, online conference on Wednesday, May 18, 2022 to connect attendees of all abilities and backgrounds with research, best practices, and most importantly, with each other.

The Diversity, Equity & Inclusion (DEI) Virtual Conference, “Beyond the Comfort Zone: Understanding and Eradicating Injustice, Racism and Inequality in the Field of Developmental Disabilities,” will explore the history, the latest research, and opportunities for the increased inclusion of people with intellectual and developmental disabilities (IDD) as well as recognition for direct care staff, who are primarily Black, Indigenous, and people of color (BIPOC).

“Disability is an underdeveloped area of DEI. For those with no prior connection to the experience of disability or the underlying issues related to race, there can be shame and hesitation in trying to discuss these issues—or worse, silence,” said Stanfort J. Perry, Conference Chair and CEO of AHRC Nassau. “The purpose of this online conference is to create a platform offering the latest insight on the intersectionality of issues pertaining to ableism and racism—to encourage questions, conversations, and above all, shine a spotlight on those whom society has marginalized.”

More than 30 years since the passage of the Americans with Disabilities Act, people with disabilities remain one of the most marginalized groups – at high risk of violent crimes to contracting and dying from COVID-19. Their essential support staff, who make tasks of daily living and participation in the wider community possible, are predominantly women of color who have spent years advocating for a living wage. According to a report from the University of Minnesota – Institute on Community Integration and The National Alliance for Direct Support Professionals, “Black/African American Direct Support Professionals (DSPs) were paid less per hour than white DSPs, and a higher percentage of Black/African American DSPs worked 40 or more additional hours per week.”

Though there is overwhelming need, an overall lack of funding has resulted in a 43% national turnover rate in the direct care workforce and a staffing crisis. Self-advocates, like Jessica Campbell, have advocated for years for necessary funding to ensure services and supports to lead an independent life. “Imagine not being able to get medication, access money, stay clean, cook, do your job, or go out into the community—that’s what a staffing crisis means to us,” said Campbell, who is currently a member of AHRC Nassau’s Board of Directors and a Field Assistant for the Long Island Region at the Self-Advocacy Association of New York State.

The upcoming DEI Virtual Conference is important to Campbell because in addition to addressing some of these issues during a conference panel, she hopes “more people have a chance to be understood and that more people can begin to understand the experience of disability.”

For Peter Berns, CEO of The Arc of the United States, “Disability providers, at the state and federal level, are working within legal, legislative, and service frameworks that can be complex and difficult to navigate regardless of whether you receive services, work in the industry, or seek to understand as an outside observer.

“Within these systems, people with disabilities and their direct care staff can become further and further removed from the action of daily life, and lead lives in parallel to their peers without disabilities—with few interactions, largely unseen and unheard,” said Berns. “The DEI Virtual Conference speaker lineup will offer valuable perspectives on how meaningful change must be the result of collective partnership and advocacy across all facets of society.”

Conference keynote and civil rights advocate Dr. Kimberlé W. Crenshaw will provide insight into the “intersectionality” framework—a concept she pioneered—addressing how overlapping identities, such as disability, gender identity, and race, can lead to complex, and sometimes under-recognized, issues of inequity and inequality.  Dr. Crenshaw currently serves as the Isidor and Seville Sulzbacher Professor of Law at Columbia Law School, as well as a Distinguished Professor of Law at the University of California, Los Angeles.

Examining the existing support systems and how to reach a more inclusive future is the focus of the plenary session lineup. Plenary Speaker Kerri E. Neifeld, Commissioner of the Office for People With Developmental Disabilities (OPWDD) in New York State, will present how her office is working to stabilize, professionalize, and strengthen the direct support workforce following the pandemic, while also advancing diversity, equity and inclusion in the developmental disabilities field.

Plenary Speaker Tawara Goode, Associate Professor and Director, Georgetown University National Center for Cultural Competence, will evaluate cultural and linguistic competence in the industry’s collective efforts to advance DEI, and more specifically, what it means to achieve outcomes in the IDD space, while Plenary Speaker Atif Choudhury, CEO of the UK-based company, Diversity & Ability, will share insights from his lived experience and career on topics ranging from how to evaluate an organization’s progress toward a fully inclusive culture to proactive acknowledgments of intersectionality.

“The quality of insight and dedication to advancing social justice outcomes at this conference is exceptional,” said Perry. “With more than 30 sessions, including speakers from a variety of professional disciplines and backgrounds, we are anticipating a day of learning and connection that advances a more inclusive and equitable future for all. That’s why the conference recordings and an event toolkit will be freely available for a year following the event. This event is intended to serve as a resource, informing and empowering more organizations and individuals.”

The DEI Virtual Conference “Beyond the Comfort Zone: Understanding and Eradicating Injustice, Racism and Inequality in the Field of Developmental Disabilities” will be held on Wednesday, May 18 from 8:30 a.m. – 6 p.m. ET at ahrc.org/deiconference. The event is free and open to all. Closed captioning will be available for all sessions; American Sign Language is available for plenary and select sessions.

FREE NASW Continuing Education Credits Available NASW-NYS is recognized by the New York State Education Department’s State Board for Mental Health Practitioners as an approved provider of continuing education for licensed social workers (Provider ID #0014), licensed mental health counselors (Provider ID #MHC-0053), and licensed marriage and family therapists (Provider ID #MFT-0037), and licensed psychologists (Provider ID #PSY-0088)

About Us
AHRC Nassau, a chapter of The Arc New York, is one of the largest agencies in New York State supporting people with intellectual and developmental disabilities (IDD). Based in Nassau County, the nonprofit empowers people to lead fulfilling lives, together with family, friends and community. AHRC’s programs include a wide array of supports for people with disabilities and their families, including vocational and employment services, adult day habilitation and community-based services, guardianship, family support services and respite/ recreation opportunities, as well as residential services. AHRC Nassau is part of an elite group of international agencies accredited by CQL | The Council on Quality and Leadership for Person-Centered Excellence Accreditation With Distinction. AHRC is also one of four agencies accredited by New York State’s Office for People With Developmental Disabilities as a Compass agency, which is the highest level of accreditation offered. For more information, visit www.ahrc.org.

The Arc of the United States advocates with 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. For more information, visit thearc.org.

For more information, please contact Nicole Zerillo, assistant director of Community Resources, AHRC Nassau, at 516.626.1075, ext. 1134, or nzerillo@ahrc.org.

SOURCE AHRC Nassau

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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The Arc Reacts to Supreme Court Ruling Weakening Remedies Available to People with Disabilities Experiencing Discrimination

Washington, D.C. – Yesterday, in Cummings v. Premier Rehab Keller, P.L.L.C., the U.S. Supreme Court held that damages for emotional distress are not recoverable in lawsuits alleging violations of two federal civil rights statutes covering people with disabilities—Section 504 of the Rehabilitation Act of 1973 (Section 504) and the Affordable Care Act (ACA). This decision will harm people with disabilities who experience mental distress and emotional injury resulting from discrimination in all aspects of public life, including medical offices, schools, workplaces, state and local government programs, and other settings.

The plaintiff in this case, Jane Cummings, is deaf and legally blind. She sought physical therapy services from Premier Rehab Keller (PRK) and asked PRK to provide an American Sign Language (ASL) interpreter at her therapy sessions. PRK refused and told Ms. Cummings that she could instead communicate with the therapist using written notes, lip reading, or gesturing. Ms. Cummings sued, alleging that PRK’s failure to provide an ASL interpreter constituted disability discrimination under Section 504 and the ACA and so she sought damages and other relief.

In partnership with other disability rights organizations, The Arc explained in an amicus brief to the U.S. Supreme Court that without the availability of emotional distress damages, some individuals with disabilities who have been discriminated against on the basis of their disability in violation of federal law will have no relief. As the amicus brief stated: “Often, violations of the relevant statutes do not cost individuals with disabilities money, nor do they impose physical harm. Instead, they are humiliated, singled out, mocked, or made to go without regular access to the service to which they are entitled….Such core harms to human dignity are the very injuries that the Rehabilitation Act, Title VI, Title IX, and the Affordable Care Act are meant to prohibit.” The amicus brief also explained that the standards for proving the level of emotional harm that justifies a damages award are already rigorous and courts carefully analyze awards for adherence to the law and evidence.

“This ruling deprives people with disabilities of justice. These civil rights statutes are intended to protect the rights of people with disabilities and other historically disenfranchised groups. In foreclosing relief for the emotional distress that may ensue from discrimination, this holding diminishes the dignity and respect that people with disabilities deserve and are entitled to as full members of our society. We are very disappointed in this ruling,” said Peter Berns, CEO, The Arc.

Justice Stephen Breyer wrote in dissent that people who suffer discrimination often feel humiliation or embarrassment and that damages for emotional suffering have long been available as remedies in cases alleging discrimination:

It is difficult to square the Court’s holding with the basic purposes that antidiscrimination laws seek to serve. One such purpose…is to vindicate “human dignity and not mere economics.” But the Court’s decision today allows victims of discrimination to recover damages only if they can prove that they have suffered economic harm, even though the primary harm inflicted by discrimination is rarely economic. Indeed, victims of intentional discrimination may sometimes suffer profound emotional injury without any attendant pecuniary harms. The Court’s decision today will leave those victims with no remedy at all.

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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Proposed Changes to Affordable Care Act and Executive Order Would Open Up Coverage to Millions of Families

WASHINGTON, D.C. – The Arc is pleased that President Biden signed an executive order this week to strengthen the Affordable Care Act (ACA), a lifeline for people with disabilities. The changes could make health insurance more affordable to millions of Americans with disabilities and low-income Americans.

President Biden, joined by former President Obama, announced that the Administration is proposing a rule change to the ACA to close what is known as the “family glitch.” The “family glitch” leaves some families stuck with unaffordable coverage because it excludes many families from using the premium tax credit to purchase affordable health insurance on the ACA marketplaces. These families, including those who have disabilities or have family members with disabilities, face totally unaffordable premiums.

“For people with intellectual and developmental disabilities (IDD), access to health care can be a matter of life or death. It is uniquely difficult for people with IDD to obtain affordable and adequate health insurance coverage despite depending on health care services more than those without disabilities,” said Marty Ford, Senior Advisor at The Arc, who was invited to and attended the White House announcement.

The ACA is critical to the lives of people with disabilities, their families, and the direct support workforce who rely on the ACA for access to health coverage for preventative care, to maintain good health, and secure vital medical treatment. The importance of the ACA is underscored by the pandemic. The public health crisis is a glaring reminder of the inequities in health care and discrimination faced by people with disabilities, other groups that are marginalized, and people holding multiple marginalized identities.

We also support other elements of President Bident’s new executive order directing federal agencies to continue to find ways to make coverage under the ACA, Medicaid, and Medicare easier to enroll in and strengthen the benefits available.

The Arc and our allies have fought relentlessly to defend the ACA to preserve this lifeline for people with disabilities. In 2020, The Arc, with a coalition of disability and civil rights organizations, joined an amicus brief filed in the U.S. Supreme Court urging the court to uphold the ACA in its entirety. The Arc also provided an amicus brief in support of upholding the law before the Fifth Circuit Court of Appeals in 2019.

Care in Crisis: Disability Rights Advocates Rally at U.S. Capitol to Demand Care Investment

WASHINGTON, DC – Today, disability rights advocates rallied in front of the U.S. Capitol to send an important message: disability rights are human rights, and those rights include the right to live in the community, work, and have relationships. A recording of the rally can be viewed here.

People with intellectual and developmental disabilities (IDD), parents, direct support professionals, other leadership from The Arc, and partnering disability organizations delivered this message at a critical point as Congress continues to work on a bill to invest in care. Hundreds of advocates showed the strength of the disability community and the growing movement, and were joined by U.S. Representative Ayanna Pressley (MA-7) and U.S. Senator Sherrod Brown (OH), who also both delivered remarks in support of disability rights.

We called on Congress to invest now in home and community-based services (HCBS) so that people with IDD can live at home in their own communities with the supports they need. More than 800,000 people are stuck on wait lists for services to help them live their daily lives. More funding can also mean living wages for direct care workers. We also called on Congress to finally update the Supplemental Security Income (SSI) program that allows many people with disabilities to access HCBS.

Rally participants traveled from across the country for this urgent advocacy moment.

Ric Nelson came from Alaska, where he is Advocacy and Outreach Manager at The Arc of Anchorage. He told the crowd the time is now for Congress to take action.

“We need to tell Congress about home and community-based services. It’s not an option, it’s a right. It’s a right for us to live in our communities! And work! And have relationships!” said Nelson. “It’s a right for us to have the same freedoms as everybody else. We have that right and we demand that right.”

HCBS allows people with IDD to live at home in their own communities with the supports they need. People with disabilities rely on HCBS for everyday things like employment supports, getting around in the community, dressing, bathing, meal preparation, taking medication, and more. But there isn’t enough money in the HCBS program to support everyone and pay a fair wage.

People with disabilities also rely on the SSI program to access HCBS. Many of the rules of the SSI program were last updated in 1972, so today, the program penalizes people with disabilities who marry and prevents people with disabilities on SSI from saving money via outdated asset limits. These rules desperately need to be updated.

The direct care workers who provide HCBS are underpaid, which leads to high turnover, critical staffing shortages, and compromised care for many people with disabilities. All too often, this means unpaid family caregivers are filling in the gaps of care.

Aryana Ingram, a direct support professional with RCM of Washington and certified caregiver with Home Helpers of Bowie, Maryland, spoke about her passion for caring for others and the need for fair pay. Ingram’s client William is the chief receptionist for The Arc of the United States.

“We need to invest more in caregiving. I work two jobs, working 6, sometimes 7 days a week to make ends meet. In order to live comfortably, that’s what I must do. I’m thankful for what I do have, but it would be greatly appreciated to receive what I deserve and need,” said Ingram. “We need our government to respect and invest in our needs right here, for our fellow caregivers who do so much because we love and respect our fellow people.”

“The lives of people with disabilities have value. We need Congress to recognize their value by investing in home and community-based services,” said Peter Berns, Chief Executive Officer of The Arc of the U.S. “We need Congress to end the waiting lists for home and community-based services. And we need Congress to raise the asset and income limits so that people with disabilities don’t have to live in poverty in order to get the help that they need.”

Kevin Wright with the DC Developmental Disabilities Council closed out the rally, stating “I always say that everyone has the same rights as others … to get the supports you need. Congress should just wake up and listen to these kind of things.”

Today’s care rally marks the end of this week’s annual Disability Policy Seminar, hosted by The Arc of the U.S., the American Association on Intellectual and Developmental Disabilities (AAIDD), the Autism Society, the Association of University Centers on Disabilities (AUCD), the National Association of Councils on Developmental Disabilities (NACDD), Self-Advocates Becoming Empowered, and United Cerebral Palsy (UCP).

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

The Arc Announces Grant from The Coca-Cola Foundation to Support the Dissemination of Special Education Resources to Ensure Equality for All Families

WASHINGTON – Students with disabilities and their families are experiencing yet another disrupted school year, as the COVID-19 pandemic continues to confront educators and families and creates new challenges in almost every aspect of education. The pandemic underscores the long history of disparities in education for students with disabilities and their families and the need for overdue improvements to the system.

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. It is a critical time to ensure that students and families are informed and equipped to advocate for what they need to achieve. The funding will allow The Arc@School to broadly disseminate information about special education to 350,000 people – leveraging our new Spanish-language resources to reach Spanish-speaking communities that have been historically underserved and provide information to assist parents to better understand and more confidently navigate the complicated special education system.

“We are excited to receive support once again from The Coca-Cola Foundation. It will allow us to help students with intellectual and developmental disabilities and families feel empowered to gain the benefits of public education in the least restrictive setting possible, as mandated by federal and state law,” said Peter Berns, Chief Executive Officer of The Arc of the United Sates. “Throughout the pandemic, time and time again, families have had to fight for their right to be included in school in a manner that is equitable and set up for success. Equal access to education is a long-standing priority of The Arc and we will keep pushing for better for as long as it takes. We thank The Coca-Cola Foundation for staying committed to education for people with disabilities 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.

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

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

The Coca-Cola Foundation

Established in 1984, The Coca-Cola Foundation has invested more than $1.2 billion globally to protect the environment, empower women to thrive and to enhance the overall well-being of people and communities.

Woman on escalator wearing a face mask; she's holding a cell phone in one hand and her suitcase handle in the other

The Arc Responds to New CDC Mask Guidance

Washington, DC – The Arc is disappointed by the decision by the Centers for Disease Control and Prevention (CDC) on Friday to revise masking guidelines for the United States. The new set of criteria deprioritizes the importance of case counts, resulting in approximately 70% of United States counties shifting status overnight. This does not mean that those counties do not still have high case counts or that people in those communities who are immunocompromised and at higher risk of contracting and being harmed by COVID-19 should not still protect themselves. The CDC acknowledges as much in their new guidance, detailing different rules for people who are immunocompromised.

“People with intellectual and developmental disabilities are at extremely high risk of contracting and dying from COVID-19 – having an intellectual disability was the strongest independent risk factor for presenting with the diagnosis and the strongest independent risk factor other than age for COVID-19 mortality,” said Peter Berns, The Arc’s CEO. Even though recent variants have been milder in some circumstances, there is no indication that they are still not a serious risk for people with IDD.

“Since the beginning of the pandemic, we have had to push back on the idea that people with IDD are second class citizens who should be deprioritized when rationing care or that the providers who serve them are not essential workers. This change to the masking guidance specifically lays out a completely separate set of rules for people with disabilities, recognizing that they are still at risk, but not asking the general public to continue to take protective measures to help reduce their risks. Access to high quality masks; accessible, affordable and available testing; monoclonal antibodies; and other mitigation options are still – two years into this crisis – not widely available and accessible to people with disabilities. Placing the burden of protecting themselves solely on the high risk individuals without these basic tools in place is unacceptable—even more so with case counts still high and non-universal access to vaccines.

“Masking indoors not only protects the individual wearing the mask, but everyone around them by reducing transmission of the virus. For people who are high risk, the amount of virus in their community is an incredibly important data point. This is especially the case for individuals with disabilities who might not be able to mask themselves and so rely on others. And it also crucial for children with complex medical needs under 5 who cannot be vaccinated right now and for children with disabilities in school who are at high risk.

“Like everyone else, people with disabilities and their loved ones are very tired of the pandemic and want to go back to something like normal. But we are still waiting for vaccines to be universally available and for case counts to drop to protect immunocompromised people. 2,797 people died of the virus on Friday when the guidance was announced and we have almost reached one million deaths, including a disproportionate number of people with IDD. We must ensure that our public health policies focus on and reflect the needs of people with disabilities, not simply tell them to fend for themselves or stay home.

“As this abrupt policy change disregards the needs of people with disabilities begins to be implemented, we ask everyone to think about others in their neighborhoods, in their communities, in that moment when questioning whether it is necessary to put on a mask. Many people will benefit from widespread masking, until things improve for everyone.”

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

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

The backs of two young children with backpacks on. Their heads are out of the frame, and they are standing facing stairs.

Federal Appeals Court Decision Ensures Iowa Schools Can Require Masking to Protect Students with Disabilities

DES MOINES, Iowa — The U.S. Court of Appeals for the Eighth Circuit today ruled that the Americans with Disabilities Act and the Rehabilitation Act require schools to impose universal masking rules where necessary to ensure students with disabilities have access to public school education. 

The decision comes in a case brought by the American Civil Liberties Union, the ACLU of Iowa, Disability Rights Iowa, The Arc of the United States, Arnold & Porter, and Duff Law Firm, P.L.C. on behalf of The Arc of Iowa and 11 parents of children with disabilities. The Eighth Circuit held that the clients are entitled to a preliminary injunction to ensure that the defendant school districts in Iowa are providing for universal masking as a reasonable accommodation so that students with disabilities can go to school safely.

“The Eighth Circuit affirmed what we’ve known to be true from the start: School mask mandate bans are discriminatory and illegal,” said Susan Mizner, Director of the ACLU’s Disability Rights Program. “To be able to attend schools safely, many students with disabilities need their schools to require masks. At a time when COVID-19 is ravaging our communities once again, this decision ensures that schools can continue to take basic public health precautions like requiring universal masking to protect their students.”

A federal district court in September enjoined the state from barring mask mandates, recognizing that “forcing children to bear the brunt of societal discord is ‘illogical and unjust.’” The state then appealed that decision, resulting in today’s ruling.

“Today’s decision is an important victory for the civil rights of children with disabilities in Iowa, who have a right to go to school with their peers,” said Rita Bettis Austen, Legal Director of the ACLU of Iowa. “No parent should have to choose between their child’s health and safety and their education, but that is the terrible position that the state put our clients in. It’s important to note that the court’s reasoning also means that even schools that are not named in the lawsuit should be requiring masks when needed to accommodate students with disabilities so they can go to school with their peers. This decision is a huge relief to families across our state.”

The groups are arguing in the lawsuit that federal civil rights laws require schools to be able to require universal masking to give students with disabilities an equal opportunity to benefit from their public education.

The following are additional comments from:

Shira Wakschlag, Senior Director, Legal Advocacy and General Counsel at The Arc of the United States:

“In the midst of yet another COVID-19 surge, the court is making it clear that students with disabilities have the right to go to school safely during this pandemic. The Arc will continue fighting to ensure that students with disabilities in Iowa and nationwide are able to attend their neighborhood schools alongside their peers without putting their health and their lives at risk.”

Catherine E. Johnson, Executive Director of Disability Rights Iowa: 

“I welcome today’s ruling that universal masking as an accommodation is both reasonable and necessary for students with disabilities to attend school in-person safely during the ongoing pandemic. This ruling comes during a time when Iowa is experiencing a surge of COVID-19 cases throughout the state. We are hopeful this opinion provides relief, confidence and clarity for parents, students, and schools to work collaboratively to restore our students’ long established civil rights under federal law and safely return our students with disabilities to their schools.”