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

/in , , , /by The Arc

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

Today, The Arc is pleased to announce that we have been awarded a grant from The Coca-Cola Foundation to expand our support of students with intellectual and developmental disabilities (IDD) and their families. It is a critical time to ensure that students and families are informed and equipped to advocate for what they need to achieve. The funding will allow The Arc@School to broadly disseminate information about special education to 350,000 people – leveraging our new Spanish-language resources to reach Spanish-speaking communities that have been historically underserved and provide information to assist parents to better understand and more confidently navigate the complicated special education system.

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

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

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

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

The Coca-Cola Foundation

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

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

The Arc Responds to New CDC Mask Guidance

/in , /by The Arc

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

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

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

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

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

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

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

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

a group of people of varying ages walk on a field with sunset in the background. They all wear blue shirts that say "volunteer".

Combating Hunger through Inclusive Volunteering for MLK Day 2022

/in /by Pam Katz

Food insecurity is a significant problem across the United States and has been magnified by the COVID-19 pandemic. While food banks typically provide for more than 37 million Americans each year, in 2020 this number skyrocketed to more than 60 million.

Against this backdrop and for the sixth year in a row, The Arc teamed up with local chapters of The Arc and other community organizations to lead MLK Day of Service events throughout the weekend. Through a grant from AmeriCorps, The Arc and its partners designed inclusive volunteering initiatives that helped reduce food insecurity in their own backyards. These projects also served as a living testament to the words of Dr. King “Everyone can be great because everyone can serve” by demonstrating that volunteers with disabilities are capable and eager to serve their communities alongside volunteers without disabilities.

The 2022 MLK grantees include AHRC Nassau, AHRC NYC, Ridge Area Arc, STAR, Inc., The Arc Harrisonburg and Rockingham, The Arc Muskegon, The Arc Nature Coast, The Arc of South Carolina, The Arc of the Quad Cities Area, The Arc Oklahoma (TARC), UCP Seguin, and Youth Impact.

So far, these dedicated organizations tackled hunger in a variety of ways including:

  • Partnering with local professional chefs to host online cooking classes for individuals with disabilities
  • Donating goods to local food kitchens
  • Assembling boxed meals and backpacks for school children
  • Executing drive-through and mobile food truck food drives
  • Delivering meals to home-bound seniors

The Arc has made tremendous strides in the fight against hunger in communities across the country. Last year, an army of over 1,000 volunteers donated close to 12,000 hours of their time to assure 26,300 of their fellow citizens had nourishing food on the table. This year we are striving to make an even bigger impact!

For these organizations, MLK Day is only the beginning of their efforts to eliminate hunger in their communities. These grantees have now turned their attention to implementing additional service events in the coming months that will continue to collect and distribute even more food. Not only do these volunteer opportunities strengthen communities, they also demonstrate the value in volunteering all year long, not just on MLK Day. In an effort to create even more year-round volunteer opportunities, The Arc is simultaneously leading another AmeriCorps grant, the September 11th National Day of Service and Remembrance, dedicated to emergency preparedness and helping communities be better prepared in case of disaster.

Want to join us? You can search and sign up for volunteering events in your area here.

The Arc logo

Federal Support Can Seed Big Improvements in Mobile Response

/in , /by Pam Katz

By Whitney Bunts & Carlean Ponder

At the end of December 2021, the Centers for Medicare and Medicaid Services (CMS) released guidance on the structure and implementation process for community-based mobile crisis intervention services, which respond to mental health crises. The guidance is an excellent rubric for states to follow when beginning to implement safe, accessible, equitable, and police-free mobile response services in anticipation of the launch in July 2022 of 988, the national suicide and mental health crisis number. 

The CMS guidance is a product of the American Rescue Plan Act (ARPA). As part of ARPA, Congress created an 85 percent Federal Medicaid Assistance Percentage (FMAP) for mobile response services. This means that the federal government will cover 85 percent of the cost of states’ mobile response services, with the states responsible for the remaining 15 percent. The FMAP funding is a 3- year federal match that will start in April 2022 and can be used within a 5-year time span. Additionally, ARPA awarded $15 million in planning grants to help 20 states build a mobile response infrastructure.

The guidance outlines best practices and specifies allowable uses for mobile response services interventions, such as:

  • Encouraging staffing structures that don’t rely on law enforcement,
  • Adding peer and family support specialists as part of mobile response teams,
  • Ensuring mobile response covers people with substance use disorders,
  • Recommending partnerships with community-based organizations, pediatricians, and schools, and
  • Providing an enhanced administrative match for some Medicaid agency costs if they implement text and chat mental health services.

The full text of the guidance provides many additional details and best practices, but the five listed above will be especially beneficial to the implementation and development of youth mobile response services. The combination of community crisis care, the expansion of mobile crisis services, and the implementation of 988 will be key strategies for advancing the safety of youth, especially among youth with disabilities, as part of a holistic approach to behavioral challenges in school settings. Studies have consistently shown that students with disabilities, particularly Black students with disabilities, are disproportionately disciplined for demonstrating behaviors described as “challenging.”

According to a 2018 Government Accountability Office report, Black students accounted for 15.5 percent of all public school students but represented 39 percent of those suspended from school. Law enforcement involvement also disproportionately affects students with disabilities, especially Black students. According to data from the U.S. Dept of Education, during the 2015-2016 school year, students with disabilities represented 12 percent of the overall student enrollment and 28 percent of students referred to law enforcement or arrested. Additionally, the 2015-16 data showed Black students represented 15 percent of the total student enrollment, and 31 percent of students who were referred to law enforcement or arrested – a 16 percentage point disparity.

In one incident captured by a viral video, police were called to apprehend an upset 5-year-old Black child who left school premises. Officers placed the child in handcuffs, returned him to the school, and berated him for crying and kicking. These types of interactions between students and the police are common, and they often leave youth traumatized and distrustful. The CMS guidance, if robustly implemented by localities and with an emphasis on developing school partnerships, can help deter harmful punitive actions and provide an alternative to law enforcement referrals.

As the federal government and states work together to support new crisis services such as the 988 national mental health crisis hotline, mobile crisis units, and respite centers, it is critical to implement these best practices in a manner that does not replicate carceral systems. While the goal is to eliminate law enforcement involvement with youth in a mental health crisis, we do not want to shuttle youth from one carceral system (detention/court involvement) to another, such as forced treatment in mental health facilities. As communities plan their crisis response systems, it is vital that stakeholders, including state and local agencies, ensure youth and youth with disabilities are included in all conversations.

Overall, this guidance is a big win in the crisis and 988 advocacy community. But local, state, and federal policymakers, agency officials, and program leaders need to do more to explicitly address the mental health crisis of young people and other special populations. Locally, schools need to collaborate and partner with mobile response teams to better meet the needs of youth, particularly Black and brown youth, and youth with disabilities. State legislators and officials must recommend that their state departments of education use funding from ARPA to support and sustain mobile response teams in schools. Federally, Congress should prioritize police-free mobile response services for youth through the FY22 and FY23 budgets.

Whitney Bunts is a policy analyst on the Youth Policy team at CLASP. Carlean Ponder is the Director of Disability Rights and Housing Policy at The Arc and she is a part of CLASP’s Youth Mobile Response Working Group.

The United States Capitol Building

The Arc Speaking Truth in Washington

/in , /by Pam Katz

Testifying Before Congress on Bridging Health Equity Gaps for People with Disabilities and Chronic Conditions

Today, as we approach year three of the COVID-19 crisis, The Arc testified before the Committee on Ways and Means, Subcommittee on Health, in the U.S. House of Representatives.

Bethany Lilly, The Arc’s Senior Director of Income Policy, represented people with intellectual and developmental disabilities, their families and friends, and the essential frontline disability service providers who support them; all of whom have directly experienced the barriers that people with disabilities face in accessing health care.

Below is a summary of Lilly’s remarks before the committee. You can access her full testimony here.

My name is Bethany Lilly and I am the Senior Director of Income Policy at The Arc of the United States. I am here today representing people with intellectual and developmental disabilities, their families and friends, and the essential frontline disability service providers who support them.

As a person with a disability, I want to acknowledge exactly how devastating the past two years of pandemic have been to my community. Millions of people with disabilities and our loved ones have lost their lives or faced two years of isolation and lockdown to protect ourselves. The frontline health care workers serving people with disabilities have faced the same risks and we mourn those we have lost, like Angie Reaves of Virginia.

My written testimony goes into detail about the common challenges and barriers that people with disabilities have accessing health care, the impact the pandemic has had on all of this, and how we can move forward to build a more equitable system. But to provide some highlights:

All people with disabilities need health insurance, but we currently have a very haphazard system of multiple private and public options that leaves many gaps: Medicaid, Medicare, the VA, the Indian Health service, employer-sponsored coverage, and Affordable Care Act to name a few. These gaps in access are concerning for everyone, but even more so for people with disabilities who often rely on health care to maintain their existing level of functioning and lives. In particular, the two-year waiting period for access to Medicare for Social Security Disability Insurance beneficiaries leaves people with very work-limiting disabilities without affordable health care. This is why we strongly support Chairman Doggett’s Stop The Wait Act. We also support efforts to close the Medicaid expansion coverage gap and improve the affordability of ACA subsidies.

Availability of particular services is also crucially important for people with disabilities. Many people with disabilities rely on home and community-based services (HCBS) not only to keep themselves healthy but to allow them to fully participate in their communities. Approximately 23% of all COVID deaths occurred in congregate settings that are the alternative to HCBS. So it is no surprise that both people with disabilities and older adults prefer those community settings. And this is why over 800,000 people across the United States are on waiting lists for HCBS. We desperately need comprehensive investment in HCBS so that people with disabilities can access the services they need. I know many Members of this Committee have co-sponsored the Better Care Better Jobs Act and I thank you all for supporting that investment in people with disabilities.

But access to HCBS isn’t enough–people with disabilities also need other comprehensive services. We need an out-of-pocket cap in Medicare Part D so beneficiaries aren’t on the hook for thousands of dollars in out-of-pocket costs for life-saving medication. Medicare needs to cover all basic health care services, including comprehensive dental, vision, and hearing benefits in Part B so that people with disabilities have access to these services.

And the health care system as a whole must acknowledge and treat people with disabilities as real people. During the past two years, our network had to repeatedly bring lawsuits or file complaints with HHS about crisis standards of care and hospital visitor policies discriminating against people with disabilities and their families. Unfortunately, this kind of discrimination is not new. Research makes it clear that many in the medical profession do not see people with disabilities having the same quality of life as people without disabilities and the health care systems reflect this.

The deep-seated bias against people with disabilities is all the more concerning knowing that COVID is a mass-disabling event. I know members of this Committee have done some work to address the needs of people experiencing Long COVID and other post-viral conditions like my fellow witness and I hope we see those investments soon. It is also crucial that we have data on people with disabilities, experiencing COVID and otherwise, that is collected with full stratification of reporting by key demographic groups.

Finally, about two other things on which the Committee has focused legislatively. First, I hope that investments the Committee has proposed to invest in medical students with disabilities are enacted soon–this is an effective way to begin to reverse bias and push back on the misconceptions about people with disabilities within the health care system. And second, I hope that we see action soon on telehealth–recent Data for Progress polling shows that 80% of all likely voters want the telehealth flexibilities created during the pandemic extended and many people with disabilities do too! We just need to ensure these options are available and accessible to all people with disabilities, just like they need to be for those in rural areas as well!

And that’s an important point about ensuring people with disabilities are included: If a policy works for people with disabilities, it will work for everyone. Working on solutions is how people with disabilities and organizations representing people with disabilities have responded to the pandemic–we have come together and explained our needs and asked to be included in the development of responsive policy.

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

/in , , , /by The Arc

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

/in , , , /by The Arc

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.

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

/in , , , , /by The Arc

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.