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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.

A teenage girl with Down syndrome standing in a yard in front of a white fence with an older family member. The woman is laughing, with her hands on her granddaughter's shoulders. They are both looking at the camera.

Thank You, Moms!

Mother’s Day is a time to celebrate mothers and the mother figures who strengthen and support us in our lives. We want to recognize and honor the fierce mom advocates who have shared their stories and struggles, and the strength to fight for families nationwide.

This past year, moms nationwide raised their voices for a historic investment in Medicaid home and community-based services (HCBS) so that everyone can get the support they need to live in their community.

Andrea from Virginia, Julie from Texas, and their families shared their struggles as they wait for nearly a decade for HCBS that can help their children get the critical care they need at home. While family time comes with much joy and love, Julie knows that “[she’s] not going to live long enough to be her [child’s] direct caregiver forever.”

In October 2021, Pennsylvania disabled mom and activist, Latoya, came to Washington, D.C., to a storytelling vigil at the U.S. Capitol to share why HCBS matters to her and her family.

I came here today because I am literally fighting for my life and freedom…. Home and community-based services and accessible housing keep me from being stuck in an institution to get my needs met-something nobody of any age wants. I want Congress to understand that their political games are putting my life and my freedom at risk, and to stop the posturing and realize what your inaction is doing to real people.

Virginia mom and sibling, Laurie, shared her and her sister Amy’s story of transitioning from an institution to receiving HCBS in a group home and how this change helped her sister grow, even though it was a scary change for their family.

California mom, Amparo, was concerned that her son Jesus and other Latino families might struggle to access disability supports and services like HCBS. From this concern, Amparo joined forces with mothers in her state to launch a local chapter of The Arc, Madres Unidas Para Una Mendota Con Igualdad of The Arc. This chapter is dedicated to fearlessly confronting disparities and racism and ensuring all people can access disability services.

On March 30th, New York mom, Laura, spoke about her family’s need for HCBS at a rally at the U.S. Capitol and entreated Congress to act urgently and boldly to support people with disabilities and their families.

The rippling effects of our crumbling care system impact everyone. We have a crisis in this country as the salaries of direct support professionals do not match the important work they do…. We need a well-trained and stable workforce for continuity and quality of care! Building bridges to caregiving leads to the building of bridges in all our lives.

And this past week, moms Dena, Faye, Nancy, and Soojung shared on our Facebook page why HCBS are essential to their families and why services must be preserved and expanded.

Moms nationwide have also fought for other significant changes to protect and support their families and others.

In Iowa, moms Charmain, Heather, Erin, and Nancy all advocated to challenge laws that would ban schools from requiring masks. Because their children experience disabilities and underlying health conditions that would make them particularly susceptible to severe illness or death from COVID-19, they argued that this ban would effectively exclude their children from public schools and deny them equal access to education.

Mom and advocate, Micki, shared her family’s experience with Social Security’s complex rules around benefits – and how earning around $300 too much 14-15 years ago nearly disqualified her son from receiving future benefits that would help him live independently in the community.

And last but certainly not least, Debbi and Kerri both detailed the impact that not being able to access paid leave had on their family. Debbi often worked through the night to meet her deadlines and keep hold of their health insurance that kept her child alive. Kerri and her family were forced to rely on a GoFundMe campaign to pay for their mortgage, utilities, and essentials so they would not lose their home.

THANK YOU to these moms and to all our moms and mother figures in our lives who strengthen us, support us, and work tirelessly to make lives better – not just for their families, but for everyone.

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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.

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Making it Personal: Continuing the Fight for Home and Community-Based Services

For decades, people with disabilities have expressed their undeniable preference to live among family and friends in their own community. Just ask Kayte: “I [want to] tell Congress how much I want to live out in the community one day and how I need HCBS (home and community-based services) to do so.”

HCBS support people with disabilities by giving them the tools to independently engage in everyday activities such as working at a job in the community, making food and eating, managing money and medications, bathing and dressing, and more. Unfortunately, for Kayte and many others, life in the community remains a dream. Currently, 800,000 people with disabilities remain on waitlists, with no access to these services due to insufficient funding and direct support worker shortages.

A photo collage using 6 polaroid-looking frames with various people in them.

The Arc and our network of people with disabilities, family members, and allies have continued to relentlessly push for additional funding to address this crisis. But it’s the stories from the people who rely on these invaluable services themselves who make the most compelling case for why we must invest in them.

“Thanks to my HCBS waiver I can be a part of my community, safely be transported to and from work, participate in activities in the community/with my friends, practice meal prep and cleaning etc. I have autism and my waiver has covered sensory equipment to help meet my sensory needs.” – Chloe

“I only receive in home supports, supports to help me with day to day things, help making sure food is still good, not spoiled, and help with cooking….I have choice in who my staff is — it’s all family. These items listed allow me to remain in the home, and be very independent. I cook my own meals, wash my own laundry, do my own grocery shopping.” – Kayte

“My supportive employment helps me keep a job in the community and provide support when needed. Because of supportive employment I am able to work as a peer support specialist at my local [chapter of The] Arc and also volunteer at American Red Cross. Without all these services I wouldn’t have the necessary supports in order to do things independently. The importance of HCBS Services is very critical to many people with disabilities. If you make cuts to these services or limit the services, it puts a barrier on the person with a disability as well as the person providing service(s). These services help me in my life and my life would look different without these services.” – Joe

“I have 10 1/2 hours, seven days a week [for HCBS] and can only hire [four] people. Another thing is that CMS (Centers for Medicare & Medicaid Services) needs to pay more for its workers—the reimbursement rate is not enough for us to compete with any other easy job out there. I am 38 and without HCBS services I would be forced into the nursing home and lose everything I’ve worked my whole life for and my precious little dog who is my life.” – Jen

“COVID-19 has exacerbated systems such as Personal Care Attendant services that were already broken. A Medicaid Consumer Directed Attendant’s paycheck has never been close to a living wage pay rate. What that translated to during COVID-19 is I could not find attendants to assist me with activities of daily living in my home. Inequitable attendant pay rates created a barrier to me to access Home and Community Based Services (HCBS).” – Ivy

While negotiations for HCBS legislation continue, there remains strong commitment for the cause in Congress. Now is not the time to back down. We must continue to educate about the importance of HCBS for people with disabilities and their families so that we can secure the funding we desperately need.

Every story matters. Share yours now with The Arc’s action alert!

 

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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.

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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.

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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.”

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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.

Rows of empty desks in a classroom

Mask Mandate Preliminary Injunction Continues to Protect Iowa Children

A federal district court today granted a preliminary injunction in our mask mandate lawsuit, blocking enforcement of Iowa’s law prohibiting schools from requiring facemasks.

Previously, the court had issued and then extended a Temporary Restraining Order (TRO), which also blocked enforcement of this harmful law. A preliminary injunction will stay in place as the lawsuit progresses and until the court makes a final decision on the merits of the case.

The court recognized that COVID-19 rates in Iowa continue to pose a risk of severe illness or death to children with disabilities or immunocompromised children represented in the lawsuit who are too young to qualify for the vaccine. The order continues to recognize that the law prohibiting masking requirements at school is likely to violate the civil rights of children with disabilities, including children with underlying conditions that make them more vulnerable to severe illness or death as a result of COVID-19.

With the law blocked, schools remain free to require masks in school. This is something we urge schools to do, in order to meet their obligations to all students as required by the Americans with Disabilities Act (ADA) and Rehabilitation Act.

“The court is making it clear, once again, 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 are able to attend their neighborhood schools alongside their peers without disabilities without putting their health and their lives at risk,” said Shira Wakschlag, Senior Director of Legal Advocacy & General Counsel at The Arc.

“With the continuation of this crucial injunction blocking HF847’s masking prohibition, schools are able to require masking in order to meet the needs of kids in their district who have disabilities, including underlying conditions that make them vulnerable to serious illness, hospitalization, or death from COVID-19.  They should continue those masking requirements they’ve put in place, and if they haven’t already, take steps now to adopt masking in school in order to comply with disability rights obligations,” said Rita Bettis Austen, Legal Director at ACLU of Iowa.

The lawsuit is brought by the American Civil Liberties Union, ACLU of Iowa, Disability Rights Iowa, The Arc of the United States, and law firms Arnold & Porter and Duff Law Firm, P.L.C. on behalf of The Arc of Iowa and 11 parents of children with disabilities.

A senator stands in a suit, speaking in front of a group of activists. The US Capitol is behind them, and beside the Senator are 5 large white boxes stacked.

Senator Bob Casey Meets Disability Rights Advocates From 24-Hour Storytelling Vigil, Urges Congress to Pass the Build Back Better Plan

Activists From Across the Nation Deliver 7,500 Stories from Individuals Impacted by Dearth of Home and Community-Based Services

Photos of the Vigil and Rally: https://bit.ly/3ahKPN9

A senator stands in a suit, speaking in front of a group of activists. The US Capitol is behind them, and beside the Senator are 5 large white boxes stacked.

WASHINGTON, DC – OCTOBER 07: Sen. Bob Casey (D-PA) speaks at a 24-hour vigil outside of the U.S. Capitol building, Sen. Bob Casey (D-PA) joins people with disabilities and advocates to demand funding for home care services in President Biden’s “Build Back Better” package before Congress on October 07, 2021 in Washington, DC. (Photo by Paul Morigi/Getty Images for Unbendable Media)

Senator Bob Casey met disability rights activists and care workers who participated in a 24-hour storytelling vigil and reiterated his commitment to fully fund services critical for the health and well-being of people with disabilities and aging adults. Flanked by dozens of ADAPT activists in wheelchairs, SEIU members in purple shirts and other prominent caregiving advocates, Senator Casey closed out the vigil outside the Capitol Thursday by imploring his colleagues in Congress to vote “yes” on the transformative Build Back Better plan that could “put the country on the road to having the best caregiving in the world.”

Advocates from the diverse “Care Can’t Wait” coalition of disability rights, labor, health, aging and caregiving groups also shared the steep health and financial costs that families pay as a result of poverty wages paid to care workers and long waitlists for home and community-based services (HCBS).

“I came here today because I am literally fighting for my life and freedom,” said Latoya Maddox, a mother from Philadelphia who has used HCBS for the past 17 years and is active in Philly ADAPT. “Home and community-based services and accessible housing keep me from being stuck in an institution to get my needs met-something nobody of any age wants. I want Congress to understand that their political games are putting my life and my freedom at risk, and to stop the posturing and realize what your inaction is doing to real people.”

Earlier in the vigil, advocates traveling from states hard hit by COVID-19—including Tennessee, Texas and Kansas—continuously read stories collected from thousands of impacted individuals—disproportionately people of color— across the country who were unable to travel to D.C., in part because they do not have access to paid leave, childcare or long-term services.

More than 800,000 people with disabilities are on waiting lists for HCBS, such as in-home care, meal delivery, transportation services and respite care. The Better Care Better Jobs provisions in the budget reconciliation seeks to eliminate long standing HCBS waitlists and allow states to expand the number of people who are eligible to receive these essential services.

“We need Congress to pass the Better Care Better Jobs Act and invest the proposed $400 billion in Medicaid HCBS funding,” said Nicole Jorwic, Senior Executive Officer of Public Policy at The Arc and one of the advocates who participated in the 24-hour vigil. “Together, we must recognize this unprecedented opportunity to begin fixing our nation’s inadequate care systems and transform the way we treat people served, and those providing the care, who deserve dignity, respect, and opportunity. Our nation must finally recognize the value of all people and significantly invest in care during this historic moment.”

Even as negotiations around the biggest jobs plan since the New Deal have stalled, the long-term care provision in the Build Back Better plan is still popular with the overwhelming majority of people across the country.

“People across the political spectrum overwhelmingly want Congress to invest in the care infrastructure that is the backbone of our economy and our lives,” said Ai-jen Poo, Executive Director of Caring Across Generations and National Domestic Workers Alliance. “Increasing wages for care workers will ensure that they can care for themselves and their own families. Increasing wages will also make care work more sustainable in the long-run and ensure a more robust workforce that can meet the rising demand for these services.”

The event was co-hosted by ACLU, ADAPT, The Arc of the United States, Autistic Self Advocacy Network, AAPD, Bazelon Center for Mental Health Law, Be A Hero, Care Can’t Wait Coalition, Caring Across Generations, Little Lobbyists, Justice in Aging, National Council on Independent Living, National Domestic Workers Alliance, National Council on Aging, National Health Law Program, and SEIU.

A group of activitists poses in front of the US Capitol at night, holding light up signs that say Care Can't Wait