The Arc logo

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.

A row of $20 bills

The Arc Supports Bill to Allow People With Disabilities to Earn and Save More Money

Washington, D.C. – The Arc supports a bipartisan bill introduced in Congress to finally give people with disabilities and older Americans significantly more freedom to earn and save money without risking the loss of vital benefits, their livelihoods, and their ability to support themselves and members of their family. The SSI Savings Penalty Elimination Act, introduced by U.S. Senators Sherrod Brown and Rob Portman on Tuesday, updates Supplemental Security Income (SSI) asset limits for the first time since the 1980s. Current SSI asset limits prevent individuals who receive the modest benefit from saving more than $2,000.

The bill raises SSI asset limits from $2,000 to $10,000 for individuals and from $3,000 to $20,000 for married couples and indexes them to inflation moving forward. SSI provides money to 8 million adults and children with disabilities and older Americans. Many recipients are Black, Hispanic, and other people of color and further marginalized – making it even more critical that Congress pass this bill.

“The SSI Savings Penalty Elimination Act is a positive step forward in The Arc’s ongoing push to give millions of people with disabilities the economic opportunity they deserve and more financial security to save for emergencies and unexpected expenses. We see too many people with disabilities and their families forced to impoverish themselves in order to maintain critical SSI benefits, instead of being able to save for the future and for emergencies that arise in all of our lives,” said Peter Berns, CEO of The Arc of the United States. “Raising asset limits would significantly improve the lives of people with IDD who receive SSI.”

For many years, The Arc has advocated relentlessly for changes to SSI asset limits and against the existing unfair and discriminatory caps. Along with advocates, we have continuously urged Members of Congress to update SSI asset limits to at least adjust for inflation, so that people with disabilities can take advantage of financial opportunity to provide for themselves and their families and feel a better sense of financial security.

The Arc sent a letter to Senators Brown and Portman in support of the bill. Read it here.

The Arc logo

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.

The Arc logo

The Arc Unifies With People With Disabilities in Ukraine

Washington, D.C. – The Arc is closely watching the horror unfold in Ukraine and thinking of the millions of adults and children with disabilities who are in harm’s way. It’s estimated that 2.7 million people with disabilities live in Ukraine, including thousands living in institutions. According to news reports, a care facility for people with disabilities was bombed, leaving residents without heat, water, and electricity. We know that food shortages are happening and many people with disabilities are cut off from medications and support services.

According to AccessAbility, 82,000 Ukranian children with disabilities are segregated in institutions and are at risk of abandonment. And the organization says only 4% of Ukraine’s infrastructure is accessible to people with disabilities. Ukraine is using underground subways as bomb shelters. However, according to Accessibility, “the vast inaccessibility of the country’s infrastructure means disabled people are not being give safety in their bomb shelters.”

We support Disability Rights International (DRI) in their calls for urgent action to protect people with disabilities and children in Ukraine’s orphanages. We fully back DRI in urging immediate attention to “protect people with disabilities in Ukraine and ensure their full inclusion in international relief efforts.”

We share DRI’s concern for adults with disabilities living in institutions in Ukraine. We fear they could be left behind as people in Ukraine escape the violence. We also fear that people with disabilities will be abandoned in all the chaos.

The Arc also supports the calls of The European Disability Forum (EDF). EDF is calling for the protection and safety of people with disabilities in Ukraine by respecting:

  • Their obligations under the United Nations Convention on the Rights of Persons with Disabilities
  • The U.N. Security Council Resolution 2475 on Protection of Persons with Disabilities in Conflict
  • International Humanitarian Law and the Humanitarian Principles

“Hour by hour, Ukrainians are fighting to survive, and for those with disabilities and their families, there are far too few options to ensure their health and safety in this attack. Their rights must be honored in the crisis response, in immigration policy and procedures, and in the days and weeks ahead as this nation fights for its future,” said Peter Berns, CEO, The Arc.

The Arc has a longstanding commitment to the human and civil rights of people with intellectual and developmental disabilities (IDD). Given that all people with IDD are complex human beings with varying attributes and living circumstances, and many experience multiple risk factors for human and civil rights violations, we emphasize that all are entitled to human and civil rights regardless of age, gender, race/ethnicity, sexual orientation, cultural, linguistic, geographic, and spiritual diversity, economic status, severity of disability, intensity of needed supports, or other factors that expose them to increased risk of rights violations.

These rights include the rights to autonomy, dignity, family, justice, life, liberty, equality, self-determination, community participation, property, health, well-being, access to voting, and equality of opportunity and others recognized by law or international declarations, conventions, or standards. All people with IDD must have the right to supports they need to exercise and ensure their human and civil rights. Local, state, federal, and international governments must strongly enforce all human and civil rights.

With your support, The Arc is responding to the crisis in Europe caused by the Russian invasion of Ukraine. Give today, and The Arc will grant 100% of the resources to organizations supporting people with intellectual and developmental disabilities on the ground in Europe who were affected by the war.

The invasion of Ukraine also reminds us that we, as a society, need to increase our awareness of the unrest and conflict tearing apart lives in many countries across the globe. While much of the media and our attention is focused on the people of Ukraine right now, let us also remember the vast numbers of lives lost and threatened daily on an international scale. In all of these regions, we support the human and civil rights of people with disabilities and call for careful consideration of their safety and access to escape war and violence.

A photo of a woman wearing a beige cardigan over a blue shirt and a necklace.

A Review of Judge Ketanji Brown Jackson’s Disability and Civil Rights Record

On February 25, President Biden nominated Judge Ketanji Brown Jackson for Associate Justice of the United States Supreme Court to fill the upcoming vacancy due to the retirement of Justice Stephen Breyer. This is the first-ever nomination of a Black woman to the Supreme Court as well as the first-ever former public defender. Judge Jackson currently sits as a circuit judge on the United States Court of Appeals for the District of Columbia Circuit and has previously served as a clerk for Supreme Court Justice Stephen Breyer, a public defender, a Commissioner on the U.S. Sentencing Commission, and as a judge for the U.S. District Court for the District of Columbia. Judge Jackson has received Columbia Law School’s Empowering Women of Color Constance Baker Motley Award. Judge Jackson’s confirmation hearing before the Senate Judiciary Committee begins on March 21.

Each nomination to the Supreme Court is incredibly significant. The Arc reviews the record of Supreme Court nominees to determine whether prospective members of the Court demonstrate a strong commitment to advancing disability civil rights and ensuring equal application of the law. The purpose of The Arc’s review is to educate the public about a given nominee’s record in order to contribute to greater understanding of the nominee with regards to the issues of greatest relevance to people with intellectual and developmental disabilities (IDD) and their families and supporters.

Judge Jackson has authored nearly 600 opinions since being appointed a judge in 2011. Here, we highlight some areas of her jurisprudence particularly relevant to people with disabilities.

EDUCATION

The Arc’s position statement on Education states: “All children with IDD must receive a free appropriate public education that includes fair evaluation, ambitious goals, challenging objectives, the right to progress, individualized supports and services, high quality instruction, and access to the general education curriculum in age-appropriate inclusive settings.”

In her opinions related to the education of students with disabilities, Judge Jackson has generally demonstrated an appreciation for the obligations of school districts to provide the supports students with disabilities—including those with the most significant disabilities—need to thrive. For example, Judge Jackson has held that public schools must ensure a private placement for a student with a disability can “adequately address” the student’s needs and provide the level of supports required for the student to receive a free appropriate public education (required by the Individuals with Disabilities Education Act) before making the placement.1 Judge Jackson has also rejected a school district’s argument that serving a student with intellectual disability and significant disability-related behaviors was “impossible” or that the student’s behavior excused the district from placing him in a program that could meet his needs and held that the school district violated the IDEA by failing to provide plaintiff an education following his expulsion.2

CRIMINAL JUSTICE

The Arc’s position statement on Criminal Justice states: “People with IDD have the right to justice and fair treatment in all areas of the criminal justice system, and must be afforded the supports and accommodations required to make justice and fair treatment a reality.”

Judge Jackson has generally shown a respect for the dignity of incarcerated people and upheld their rights to receive accommodations and fair treatment while entangled in the criminal justice system. For example, Judge Jackson has held that a jail violated the rights of a deaf inmate under federal disability rights laws when jail officials did nothing to assess the inmate’s need for reasonable modifications despite their knowledge of his disability and failed to provide him with a sign language interpreter, forcing him to communicate only through lip reading and written notes and sending him to solitary confinement.3 In her opinion, Judge Jackson wrote that although “[i]ncarceration inherently involves the relinquishment of many privileges,” incarcerated people retain important rights, “including protections against disability discrimination.”

Judge Jackson has granted a number of compassionate releases during the pandemic, including of prisoners with mental and physical disabilities.4 Judge Jackson has spoken out about the need for a robust public defense system in order to “protect the rights of the accused.”5 Judge Jackson has also expressed concern about the ability of people facing the death penalty to receive adequate opportunity to assert their innocence if new evidence emerges post-conviction.6 Such post-conviction evidence can also be critical in cases involving the death penalty and intellectual disability. The U.S. Supreme Court has held that the Eighth Amendment of the U.S. Constitution prohibits the execution of people with intellectual disability as cruel and unusual punishment and has mandated that states cannot ignore clinical science or impose procedures that create an “unacceptable level of risk” that people with intellectual disability will be executed.7 But proving that an individual has intellectual disability in the death penalty context involves a fact-intensive, comprehensive review of records since childhood as well as expert testimony and all too many individuals who likely have intellectual disability are initially represented by counsel unfamiliar with this area of law and are precluded from presenting relevant evidence to the court later on in the process because of procedural hurdles, resulting in miscarriages of justice for these defendants.

Prior to becoming a judge, Judge Jackson represented criminal defendants with mental health disabilities, including those with co-occurring intellectual or developmental disabilities and, thus, has a keen awareness of the barriers such individuals can face in accessing justice.8

EMPLOYMENT

The Arc’s position statement on Employment states: “People with IDD can be employed in the community alongside people without disabilities and earn competitive wages. They should be supported to make informed choices about their work and careers and have the resources to seek, obtain, and be successful in community employment.”

Judge Jackson has generally demonstrated an appreciation for plaintiffs’ allegations in employment discrimination actions and has held that federal disability rights laws require employers to engage in a meaningful, interactive process with employees with disabilities to ensure the employees have the reasonable accommodations they need to perform their jobs.9 For example, Judge Jackson has held that employers must consider job reassignments for qualified employees with disabilities as reasonable accommodations where other accommodations have proved ineffective. Judge Jackson has also repeatedly emphasized the importance of allowing discovery to proceed to ensure that plaintiffs challenging workplace discrimination have a fair opportunity to present their case.10 Judge Jackson has also demonstrated a commitment to ensuring that pro se plaintiffs—plaintiffs who represent themselves—are able to meaningfully assert their rights in court, ensuring access to justice for those without legal representation who may have misunderstood legal processes and procedures, including for disability-related reasons, among others.11

At times, Judge Jackson has imposed a relatively high bar for proving employment discrimination and has, at times, read procedural requirements in restrictive ways that limit the avenues for relief for employees alleging discrimination.12

CIVIL RIGHTS

The Arc’s position statement on Human and Civil Rights states: “The human and civil rights of all people with IDD must be honored, protected, communicated, enforced and thus be central to all advocacy on their behalf.”

Judge Jackson has generally demonstrated an understanding of the robust protections provided by federal and disability civil rights laws. For example, in a case alleging that Uber discriminated against wheelchair users, Judge Jackson held that people with disabilities do not need to engage in the “futile gesture” of making themselves subject to Uber’s discriminatory policies in order to have standing to sue the company.13 This principle also applies in other contexts under federal disability rights laws and allows, for example, people with IDD who are at serious risk of institutionalization to challenge government policies that deny them community-based services and supports even if they have not yet been institutionalized. Judge Jackson also held that Uber is a public transportation company—not a technology company—and is subject to liability under the Americans with Disabilities Act, ensuring that the rights of people with disabilities are protected in a rapidly changing transportation industry.

Judge Jackson has also participated in a decision upholding President Biden’s eviction moratorium designed to keep renters in their homes during the COVID-19 pandemic, demonstrating a concern for the rights of the most vulnerable residents, which includes renters with disabilities who face a disproportionately severe risk of experiencing homelessness and complications from COVID-19.14

With over a decade on the federal bench, Judge Jackson has extensive relevant experience to serve as a Supreme Court justice. In her nearly 600 opinions on a wide variety of topics, Judge Jackson has demonstrated an understanding and appreciation of the robust protections provided by federal disability and civil rights laws. In disability and other civil rights cases, Judge Jackson has shown a willingness to hear claims from injured plaintiffs, a commitment to avoiding imposing unfair burdens on plaintiffs, and has acknowledged the hardships that drove plaintiffs to seek relief. Her unique background as a public defender prior to becoming a judge and her overall judicial record indicates that she is committed to a generally robust interpretation of disability and civil rights laws, fundamental fairness for all, and ensuring that plaintiffs receive their day in court. Judge Jackson’s historic nomination is important to The Arc as we are committed to access, equity, and inclusion in all we do, and our diverse and growing disability rights movement expects the institutions that uphold our democracy to reflect the full diversity of our country.

The Arc is grateful for a number of groups for publishing their research regarding Judge Jackson’s disability and civil rights record which this statement draws from. For a more thorough review of Judge Jackson’s record on a variety of topics, please see reports from the Bazelon Center for Mental Health Law, NAACP LDF, and the Alliance for Justice.

 

1 W.S. v. District of Columbia, 502 F. Supp. 3d 102 (D.D.C. 2020).

2 Schiff v. District of Columbia, Civil Action No. 18-cv-1382 (KBJ), 2019 U.S. Dist. LEXIS 189606 (D.D.C. Nov. 1, 2019).

3 Pierce v. District of Columbia, 128 F. Supp. 3d 250 (D.D.C. 2015)

4 See, e.g., United States v. Greene, No. 71-CR-1913 (KBJ), 516 F. Supp. 3d 1 (D.D.C. 2021); United States v. Dunlap, No. 17-CR-207 (KBJ), 485 F. Supp. 3d 129 (D.D.C. 2020); United States v. Johnson, No. 15-CR-125 (KBJ), 464 F. Supp. 3d 22 (D.D.C. 2020).

5 Ketanji Brown Jackson, “Responses to Questions for the Record from Senator Ben Sasse to Judge Ketanji Brown Jackson, Nominee to the United States Court of Appeals for the D.C. Circuit,” Senate Judiciary Committee (2022) at 465 (of PDF), available at https://www.judiciary.senate.gov/imo/media/doc/Jackson%20SJQ%20Attachments%20Final.pdf.

6 Ketanji Brown Jackson, “Supreme Court as Gatekeeper: Screening Petitions for ‘Original’ Writs of Habeas Corpus in the Wake of the A.E.D.P.A.” (November 2001), available at https://www.judiciary.senate.gov/imo/media/doc/Jackson%20SJQ%20Attachments%20Final.pdf (pp 1474-85).

7 See, e.g., Atkins v. Virginia, 536 U.S. 304 (2002), Hall v. Florida, 134 S. Ct. 1986 (2014), and Moore v. Texas, 137 S. Ct. 1039 (2017).

8 See, e.g., United States v. Kosh, 184 Fed. Appx. 4 (D.C. Cir. 2006); United States v. Lowe, 186 Fed. Appx. 1 (D.C. Cir. 2006).

9 See, e.g., Von Drasek v. Burwell, 121 F. Supp. 3d 143 (D.D.C. 2015); Mitchell v. Pompeo, No. 1:15-cv-1849 (KBJ), 2019 U.S. Dist. LEXIS 54797 (D.D.C. Mar. 31, 2019).

10 See, e.g., Tyson v. Brennan, 306 F. Supp. 3d 365 (D.D.C. 2017); Ross v. United States Capitol Police, 6 195 F. Supp. 3d 180 (D.D.C. 2016).

11 See, e.g., Horsey v. United States Dep’t of State, 170 F. Supp. 3d 256 (D.D.C. 2016).

12 See, e.g., Alford v. Providence Hosp., 60 F. Supp. 3d 118 (D.D.C. 2014); Crawford v. Johnson, 166 F. Supp. 3d 1 (D.D.C. 2016).

13 Equal Rights Ctr. v. Uber Techs., Inc., 525 F. Supp. 3d 62 (D.D.C. 2021).

14 Alabama Ass’n of Realtors v. United States Dep’t of Health & Hum. Servs., No. 1:20-CV-03377- DLF, 2021 WL 3721431 at *1 (D.C. Cir. Aug. 20, 2021).

 

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.

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.”

The Arc logo

Following Meeting With Dr. Rochelle Walensky, Disability Rights Advocates Release Statement and Readout

Washington, D.C. – Following a meeting between leaders from disability rights organizations and CDC Director Rochelle Walensky, advocates released the following statement:

The dialogue with the CDC Director was long overdue. We should have never gotten to the point where the head of our nation’s leading public health agency finds it encouraging that a disproportionate number of COVID deaths are people with disabilities. The disability community’s coordinated organizing resulted in a number of actionable recommendations that were shared with Director Walensky Friday, including:

  • Commit to regular ongoing meetings and consultation with disability stakeholders and CDC Leadership
  • Ground isolation guidance in public health evidence and data and in an understanding of their impacts on those most at risk
  • Take action to center people with disabilities—and other communities disproportionately impacted by COVID-19—by ensuring that all CDC COVID-19 guidance and other response efforts are inclusive of the needs of people with disabilities.

We are grateful for the opportunity to present these recommendations to the CDC, and we hope they and other federal agencies within HHS and beyond will work quickly to pursue them.

Bethany Lilly, Senior Director of Income Policy at The Arc of the United States, said “This was a good initial step for the CDC– listening and learning from disability advocates. But there are concrete policy steps that the CDC must take and we look forward to meeting with the CDC Director and other leadership to move these policies forward. We also know that the millions of people with disabilities across the U.S. want to hear from the Director as well.” 

Maria Town, President and CEO of the American Association of People with Disabilities said, “The ableism that the disability community has experienced in our nation’s response to the COVID-19 pandemic is not unique nor exclusive to the CDC. It is pervasive in the field of public health and in the medical field. I hope state public health agencies and other healthcare entities are closely following our advocacy so that they center the disability community in their responses to the current emergency and future pandemics.”

Julia Bascom, Executive Director for the Autistic Self Advocacy Network, said “We hope that the CDC will use this moment to begin to rebuild trust with the disability community. This must include both a genuine public apology as well as sustained policy change, beginning with the list of detailed recommendations we provided. We look forward to partnering with the CDC on concrete actions to safeguard and support people with disabilities and transform how the agency approaches its work.”

Elena Hung, Executive Director and Co-founder of Little Lobbyists, said “We appreciate CDC Director Dr. Walensky responding to our request to meet with disability leaders to acknowledge the harm her recent statement and the CDC’s policies caused our community throughout the duration of the COVID-19 pandemic. We anticipate immediate action to address the concerns raised and we look forward to ongoing meetings with CDC leadership to rebuild trust with the disability community. Little Lobbyists will continue the work to hold our leaders accountable and ensure our children with complex medical needs and disabilities are part of every decision that impacts them.”

Susan Henderson, Executive Director at the Disability Rights Education & Defense Fund, said “We will be engaging with other agencies within the Department of Health and Human Services, as well as Congress, to make sure that the entrenched ableism that has led to systemic discrimination on the basis of disability, and has cost hundreds of thousands of disabled people their lives during this pandemic, does not happen again. We hope that, working with Dr. Walensky, the CDC leads by example.”

Matthew Cortland, Senior Fellow, Data for Progress, said, “Tens of millions of chronically ill, disabled, and immunocompromised Americans need not just the CDC but the entire federal government, led by the Biden White House, to swiftly implement substantive policies that actually value our lives. Today’s meeting was only the very first step on the Biden Administration’s path to rebuilding trust with the disability community.

I look forward to the CDC and the entire Biden Administration partnering with the disability community to develop a pandemic response that meaningfully safeguards the lives of tens of millions of chronically ill, disabled, and immunocompromised Americans.”

Jamila Headley, Co-Executive Director of Be A Hero said: “Today we called on the Director of the Centers for Disease Control to do two critical things: to put people with disabilities at the very center of the COVID-19 response, and to ground her agency’s interventions and guidance firmly in the evidence of what will best work to keep all of us safe.

Headley continued, “In the richest country in the world, the agencies in charge of our pandemic response should not be grounding our public health recommendations and interventions in an acceptance that COVID-19 tests and high quality masks are (and will remain) too scarce. Instead, they should ground their approach in evidence of what is most effective, and in the deep knowledge of the communities who are suffering the most at the hands of COVID-19. At this moment people living with disabilities and their loved ones should know that our government is doing everything they can to keep us safe and alive.”

“Even in the middle of the largest global pandemic in a century, this country can afford to ensure that all of us—including the 93 million people in America living with disabilities and the growing numbers of people joining our community—thrive. We will keep fighting until they do just that.”

“Today Dr. Walenksy apologized to disability rights leaders for her hurtful words last weekend, and said that she and her agency needed to do better. I agree and tomorrow, I expect her to begin taking action,” said Headley.

Background & Readout

The meeting took place following comments from Walensky on Good Morning America last Friday, January 7 about a study she found “encouraging,” in which deaths among vaccinated people were mostly isolated to those who have four or more comorbidities. The comment, for which Walensky apologized in the meeting, sparked outrage from the disability community. The hashtag #MyDisabledLifeIsWorthy, started by writer and advocate Imani Barbarin, was a top trend on Twitter last weekend. The frustration extends far beyond Walensky’s initial comment and reflects a greater need for government and society to center disabled and at-risk individuals in managing COVID. In recognition of the growing frustration of the disability community, groups requested a meeting with Walensky.

During the meeting, representatives sought to hold Director Walensky accountable for her comments, establish a working relationship with the CDC, and have a detailed discussion with Director Walenksy about policies the agency should adopt and implement to prioritize the health and safety of the disability community. During the meeting, Director Walensky apologized for her comments, and stated it was not her intent to be harmful to the community. Advocates acknowledged her apology, and also stressed the need for a public apology, as disabled and medically complex Americans who were not in this meeting also deserve to hear from Walensky. Director Walenksy also committed to regular meetings with involvement from senior officials and herself going forward.

The following organizations and individual advocates were in attendance: The American Association of People with Disabilities (AAPD), The Arc of the United States, The Autistic Self Advocacy Network (ASAN), Be A Hero, The Disability Justice Initiative at the Center for American Progress, Disability Rights Education & Defense Fund (DREDF), the Epilepsy Foundation, Little Lobbyists, and Matthew Cortland, Senior Fellow, Data for Progress.

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 Arc logo

Disability Rights Advocates to Meet With CDC Director Following GMA Appearance; Nearly 150 Disability Organizations Release Policy Demand Letter Ahead of Meeting

Washington, D.C. – On Friday, January 7, CDC Director Dr. Rochelle Walensky, in an interview with Good Morning America, commented on the results of a research study. Director Walensky remarked that a disproportionate number of deaths due to COVID-19 in the study population occurred among those with four or more comorbidities, calling those patients “people who were unwell to begin with” and these results as “encouraging news”. The disability community, who represent those with four or more comorbidities who died in the study, responded in turn. The hashtag #MyDisabledLifeIsWorthy, started by writer and activist Imani Barbarin, was a top trend on Twitter over the weekend. 

As a result of the controversy, representatives from numerous disability organizations requested a meeting with the CDC Director. Tomorrow, Friday, January 14, several will meet with CDC Director Rochelle Walensky to express their frustration with both the comment and how the CDC’s pandemic response has harmed and often left out the disability community. The following organizations and individual advocates will be represented: The American Association of People with Disabilities (AAPD), The Arc of the United States, The Autistic Self Advocacy Network (ASAN), Be A Hero, The Disability Justice Initiative at the Center for American Progress, Disability Rights Education & Defense Fund (DREDF), Little Lobbyists, and Matthew Cortland, Senior Fellow, Data for Progress. 

Ahead of the meeting, advocates sent a letter to the CDC Director from nearly 150  disability-focused organizations from around the country, representing tens of millions of disabled Americans from every state and territory. The letter, which can be read in full here, reads: 

“The disability community’s faith in the government agencies responding to the pandemic has taken hit after hit with repeated policy choices that devalue disabled lives. For every step in the right direction, there have been steps backwards or actions delayed. It is necessary for the public health of our nation that the CDC and other agencies responding to the pandemic take immediate, concrete policy steps to rebuild that trust, protect disabled and high-risk people, and enact an equitable vision of pandemic recovery that centers on those communities most at risk and begins to shift long-standing systemic inequities.” 

To rebuild the disability community’s trust in the CDC, the letter details several important policy demands and outlines three key requests:  

1) Commit to regular ongoing meetings and consultation with disability stakeholders and CDC Leadership; 

2) Base isolation guidance in public health evidence and data with an understanding of the impacts on those most at risk; and 

3) Center people with disabilities–and other communities disproportionately impacted by COVID-19–by ensuring that all CDC COVID-19 guidance is inclusive of the needs of people with disabilities. 

Finally, the groups are requesting a public apology from Director Walensky to disabled, immunocompromised, and high-risk Americans, as well as an affirmation of the CDC’s commitment to ensuring their pandemic response sufficiently centers the needs of these communities. More than 30 million Americans live with 5 or more chronic conditions, according to the Rand Corporation

The representatives in this meeting take extremely seriously their responsibility to people with disabilities, who are feeling scared and forgotten as the United States enters its third year of the COVID-19 pandemic. Accordingly, written statements from the organizations will be shared following tomorrow’s meeting. A press call will also take place at 4:30pm ET, on Friday, January 14, roughly one hour after the meeting. If you are a member of the media and would like to register for the call, please email Jess Davidson, AAPD Communications Director, at jdavidson@aapd.com

The Arc logo

Federal Court Allows Lawsuit Challenging Georgia’s Voter Suppression Law to Proceed

WASHINGTON, DC —Today, a federal court denied the three motions to dismiss litigation filed by The Arc and others challenging Georgia’s anti-voter law S.B. 202, allowing the case, Sixth District of the African Methodist Episcopal Church, et al. v. Kemp, et al. to proceed.

The Arc is counsel and a plaintiff in the litigation along with plaintiffs the Georgia Muslim Voter Project, Women Watch Afrika, Latino Community Fund Georgia, and co-counsel with the NAACP Legal Defense and Educational Fund, Inc., American Civil Liberties Union (ACLU), ACLU of Georgia, and law firms Davis, Wright, Tremaine and WilmerHale.

“We are pleased that the Court has denied the motions to dismiss, allowing this case to move forward. Voter suppression is a disability rights issue. People with disabilities have the fundamental right to vote and participate in our democracy, but this right has too often been denied. S.B. 202 disenfranchises voters with disabilities and denies them equal access to voting in violation of federal disability rights laws,” said Shira Wakschlag, Senior Director, Legal Advocacy & General Counsel at 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 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.