A man with disabilities stands outside. He is holding hand written signs that read, "Disability Rights are Human Rights!!" and "Stop Discrimination Now." The U.S. Capitol building is in the background.

Spotlighting The Arc’s Changemakers: Mitch Routon, Secretary of The Arc’s Board of Directors

When Mitch was just ten days old, he had a stroke. Four years later, he began experiencing seizures, which would continue until he was 10 years old. The stroke and seizures mean that Mitch has trouble using both the left and right sides of his body—but it also inspires him to focus on his abilities rather than his disabilities.

Mitch has a friendly, laid-back demeanor, but he is also bold in speaking out on injustices against people with disabilities. Inspired by the advocacy and inquisitiveness of his father, Ralph, an independent journalist in the Colorado Springs area, Mitch learned to speak up for himself and others in uncomfortable situations—and quickly learned how important his voice was. He also developed his confidence and relationships as manager of his high school football team.

In 1993, Mitch’s dad served on The Arc Pikes Peak Region Board of Directors, one of the many boards in the disability community that Ralph took part in. It was through this connection that Mitch first became aware of The Arc locally—and so began Mitch’s own leadership with The Arc network.

After graduating from Manitou Springs High School, Mitch’s family moved to Florida. Five years later, Mitch headed back to Colorado on his own, ahead of his family’s impending move. His deep roots and connections carved his early adulthood—he worked at The Broadmoor World Arena, Safeway, Colorado College, The Arc Thrift Store, and other local establishments and coached the Manitou Springs High School football team.

In 2007, in a full circle moment, Mitch was invited to join the Board of Directors at The Arc Pikes Peak Region.Mitch Routon stands a podium on a stage, speaking to an audience at The Arc National Convention.

According to Wil Romero, The Arc Pikes Peak Region Executive Director, “Mitch is Mr. The Arc. He is everything you could want out of The Arc and a constant voice to hold us accountable. He keeps our mission and impact top of mind for staff and volunteers every day. He’s a staple in our program and a voice for how we should be supporting people with disabilities and the new demands and challenges being faces by people with disabilities today.”

In 2009, Mitch wanted to expand his advocacy to a new level. With the support of his local chapter, he successfully championed himself to become a member of The Arc of Colorado’s board of directors. According to Tonya Kelly, a past president of The Arc of Colorado, “Mitch is an inspiration to me and other board members and to advocates with IDD around the state. He brought his lived experience to The Arc of Colorado’s public policy efforts, testifying at the Capitol and calling legislators on the phone. His efforts inspired others to speak out as well. As president, I recruited Mitch to become Vice President, and he was the first person with IDD to serve on The Arc of Colorado’s Executive Committee, becoming President in 2021. He has shown the organization that those with IDD know no boundaries and deserve to be seen in leadership roles. Under his leadership, we became a stronger board and nonprofit. He also supported the organization as we hosted The Arc’s national convention and established an endowment for the organization.”

In 2018, Mitch was ready to take his advocacy to the national level and became a member of The Arc of the United States’ Board of Directors, and now serves as our Secretary.

“I wanted to join the board to get involved politically and ensure that people with disabilities have the same rights as everyone else. I think it is very important that we stay on top of disability rights. Every year, we see Congress say we don’t matter by trying to cut our health insurance or ignoring improvements to Social Security. It’s critical that we go to Capitol Hill and Washington, DC, and are heard by our members of Congress,” says Mitch.

In 2019, Mitch’s advocacy culminated in an opportunity to be heard directly from his member of Congress while attending one of The Arc’s keystone events—the Disability Policy Seminar. This event brings together advocates nationwide to learn about key policy priorities and then go to Capitol Hill to speak with their Members of Congress. Before the event, Mitch was a regular caller to his representatives’ offices around disability issues, but he sometimes did not feel heard. During the Hill visit, Mitch noticed his Member of Congress walking past him, intending to bypass The Arc’s group. Undeterred, Mitch stopped him to share his thoughts on disability issues and ensure he and other Coloradans with disabilities were heard.

For Mitch, support for The Arc is all about advocacy and people with disabilities.A man with disabilities stands outside. He is holding hand written signs that read, "Disability Rights are Human Rights!!" and "Stop Discrimination Now." The U.S. Capitol building is in the background.

“The Arc focuses on people with disabilities and ensures they have what they want and need. Our bottom line is we care about people. I serve on the board and make sure the organizations are running well so that the people with disabilities we serve are being taken care of,” says Mitch.

For the past 30 years and throughout his life, Mitch has worked tirelessly to advocate for himself and others—and hopes that other people with disabilities will join him as leaders of The Arc.

“I hope there’s more people with disabilities who want to be a president of the board, vice president, secretary, or treasurer. I would love to see more people with disabilities in a leadership role and connecting with their local, state, and national chapters of The Arc….Supporting The Arc is the right thing to do because, at the end of the day, The Arc is here to help people.”

Betty Davis wears a blue top and white pants and stands outsie in front of The Arc of Alachua County sign.

DSP Recognition Week: Betty Davis’ Story

People with disabilities want to live in their own communities and make their own choices about their lives, just like everyone else. For millions, direct support professionals (DSPs) like Betty Davis make that independence possible.

Betty Davis stands in a kitchen with a client, assisting her client with medications.Betty has always had the innate ability to create a safe space for disabled people. As a child, she would talk to them in the grocery store, at church, and on the street. At the age of 18, she found herself running a daycare center and was drawn to do more for the disabled children who came through her doors. She enrolled in disability studies at Santa Fe College, which was right across the street from The Arc of Alachua County. Upon graduating, The Arc of Alachua County immediately hired her as a DSP. That was 20 years ago, and Betty has never looked back.

As Betty shares, “I fell in love with my clients. It wasn’t the pay. It wasn’t the management. It was the clients themselves. If you put your heart and soul into this job, you’ll get love and respect back. My clients have loved me so hard through the years.

Being a DSP is rewarding work, but it can also be physically demanding, emotionally draining, and medically complex. Betty works at a group home with four women who have Prader-Willi syndrome, a developmental disability that causes a range of physical symptoms, learning difficulties, and behavioral challenges – most notably, a constant sense of hunger. Her clients need support 24 hours a day. “Every day, I sit down with each of my clients to go over their caloric intake. I assist them with getting bathed. I make and feed them dinner. I help them do their house chores, manage their medications, and go to bed. On special occasions, like birthdays, I take them home to be with their families. Every Friday, we go out to dinner at a different restaurant and go shopping afterward. They love Walmart, Dollar Tree, Roses, Five Below, and Ollies.”

Not only does Betty advocate for her clients, but they also advocate for her. Betty tears up as she recalls how Melinda, a client who recently passed away at the age of 61, went to the CEO of The Arc, Mark Swain, to ask him to meet her and recognize her work. That year, Betty won Employee of the Year. “She wanted to recognize the type of person I was and that I go out of the way to make them happy,” Betty added.

Despite the crucialBetty Davis stands in line with a few of her clients at Walmart role of DSPs, chronic underinvestment in Medicaid’s home and community-based services has led to paltry wages and training, which has created a nationwide shortage of workers. As Betty says, “Spend a day in our shoes. It might seem like what we do is easy, but it’s not. There’s no training, so I had to learn on the job, and there’s not enough staff. Sometimes, I have to work without a break, cover the next shift, or come in on weekends, but I don’t have a problem with that because I want my clients to be happy. Their families tell me all the time that if I wasn’t in their lives, they don’t know what they’d do or where they’d be.”

Luckily, Betty wouldn’t want to work anywhere else. “The Arc is a wonderful place for resources and a wonderful place to work. They are behind me 100% if I want to get more training, and they try to get as many resources as possible to help DSPs out. This is the place to bring your loved one. My clients wouldn’t want to be any other place.”

DSPs like Betty are vital to helping people with disabilities live with dignity and freedom. Help us celebrate them this DSP Recognition Week and beyond.

The torso of a young student wearing a light blue jean jacket over a white shirt. The student is holding three books and a notebook in their left hand and is wearing a backpack. You cannot see their face.

The Arc of Spokane: Empowering Parents To Be Better Advocates at School and Beyond

The Arc of Spokane empowers and supports parents of adults and kids with disabilities through their Parent to Parent program. In 2022, the chapter saw an opportunity to expand their support of parents of school-aged kids with disabilities by leveraging grant funding to provide scholarships to The Arc@School’s Advocacy Curriculum.

The Advocacy Curriculum is a self-paced, online training, designed to support families in navigating the special education system. It takes users through the special education basics and prepares them to effectively advocate for appropriate educational services and supports.

Recently, we spoke with The Arc of Spokane’s Advocacy and Family Support Director, Jennifer Oliveri, and their Parent to Parent Coordinator, Tami Leitz. They shared how their idea to provide scholarships to the Advocacy Curriculum came to life, how their program works, and why they think other chapters can replicate this successful model.

Identifying a Need and an Opportunity

Tami: Part of my job involves parent training, and we have designated funds to help with that [through a grant from the county]. In the past, we were sending people across the state to an infant and early childhood conference, but it wasn’t very accessible for parents of children with disabilities—and it was also only for early childhood.

So, I talked to Jen, who’s my supervisor, and asked if we could think of some better ways to use the funds. One of the ideas we had was to give people scholarships to The Arc@School’s Advocacy Curriculum. We want to help as many people as possible, but it’s impossible to go to every IEP meeting, so the more people we can get educated about the law, the more we can ensure parents are able to hold school districts accountable. Jen loves new ideas and was on board with putting a proposal together.

Jennifer: We’re funded through Spokane County for parent training. So, we outlined a few ideas for them on different ways we could use the money, including Tami’s proposal. We know that IEPs are a top priority, but we wanted to give them a few choices. Thankfully, they approved the use of funds for IEP training. This means we are able to give scholarships to parents to access the Advocacy Curriculum for free.

Adapting the Program to Different Learning Styles

Tami: The first time we did this, I offered two options. Parents could either go through the online curriculum on their own, or they could come to a one-hour Zoom class on Tuesdays. We scheduled the Zoom classes during a lunch break time slot, and we would go through the online modules together. After each video, we would talk about any questions they had. Then, we would go through some additional PowerPoint slides I made with state and county specific information.

I made slides for each module because things can vary a lot from state to state. I wanted to make sure parents got information about things like how to access the birth-to-three program or what transition looks like in their area, because it can vary from school to school. After that, parents could stay on Zoom with me if they had personal questions. I did that every Tuesday for eight weeks with that group, and we went through the entire curriculum together.

“I highly recommend The Arc@School curriculum to parents of kids on IEPs and 504s. I learned so much!” – Alisha, WA

For some people, having that accountability works. But then you also have parents who are a little more independent, busier, and just happy to go through it on their own.

Empowering Families & Why Learning How to Advocate Is So Important

Tami: We really focus on empowerment and celebrating education. We don’t want families to feel like they’re powerless and the systems are impossible. Sometimes, I get people where maybe their child is 16 and they say, “Well, we’re almost done. What’s the point of learning this now?” But it’s still so important to learn how to advocate, because they’re going to be working in systems like this forever with their child. Parents will have to use this skill later in their journey when dealing with Supplemental Security Income (SSI) or the Developmental Disabilities Administration or vocational rehabilitation, so it’s never too late.

Empowering parents and caregivers with this information is vital. They are not being educated about their rights, so, often, their student’s education, relationships, and mental health suffer because of it. Schools regularly [don’t comply with the law], and most people—sometimes even the teachers—don’t realize it’s happening or how to intervene. When people understand their rights, advocate, and expect to be treated fairly, systems can change. This curriculum is important to support individual families, but on a larger scale, it’s the kind of resource we need in order to see systematic change.

Advice for Chapters Interested in Replicating This Program

Tami: One of the hardest things about an IEP is communicating the information to a student’s team from year to year. A new school year can feel like a total do-over to families. By empowering [them] with this information, it can save time for advocates and parent support professionals.
[It’s also helpful for] family resource coordinators, therapists working for school districts, and teachers to go through the curriculum. These professionals act as guides to families in schools, but many may not have had the opportunity to learn about special education law. The curriculum equips them with knowledge, but it can also give them a greater capacity for empathy by providing a better understanding of what people with disabilities are up against when trying to access services.

Jennifer: It’s like the adage of “teaching people to fish.” While we can provide one-on-one support to those seeking assistance with IEPs on a limited basis, in Spokane County specifically, there are hundreds of people who need assistance with understanding their rights when it comes to the school system. This model supports more people and gives them the lifelong tools to advocate with confidence. I don’t know if every chapter has extra funds necessarily [to start a similar program], but it could be worth it to look into grant funding to try to replicate this model.

Is your organization interested in learning more about how to start a similar program? Send us an email at school@thearc.org and a member of our team will get back to you.

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 volunteer in a tie dye shirt holds a paper bag of food donations

That’s Amore: Volunteers With Disabilities Address Food Insecurity Through Pasta Kits

In honor of National Volunteer Month, The Arc is highlighting the efforts of volunteers with disabilities. While these individuals are serving their neighbors, they are also a living example of the tremendous value they bring to their communities.

A volunteer in a wheelchairs sits at a table. He is working on meal kit assembly, with various items strewn across the table, wile other volunteers stand nearby helping.

The staff and clients at AHRC Nassau know the value of a home cooked meal – and the comfort and joy it brings to a family. For their 2022 MLK Day of Service event, they wanted to extend that joy while offering tangible food assistance to their community in

Brookville, New York. They decided to create, pack, and deliver pasta meal kits to their neighbors experiencing food insecurity. Volunteers were empowered by learning what ingredients and steps were needed to cook a delicious meal. They also helped to show that people with disabilities are not always the ones in need of service and can give back to their communities as well.

Twenty volunteers with disabilities directed each phase of the process, from finding all the ingredients to setting up the event in January. Some of AHRC Nassau’s clients created hand-written cards celebrating the spirit of the initiative. Others designed artwork, each piece inscribed with a quote from Dr. Martin Luther King Jr.: “Only in the darkness can you see the stars.” These items were placed in the meal kits alongside the ingredients.

A woman with red dyed hair in a black sweatshirt stands, smiling and holding a package of food, in the grocery store.As the big day arrived, volunteers with disabilities again led the way, including Nijah, who oversaw setup. Others prepared the boxes, packed the meal kits, and completed quality inspection. Once all boxes were packed and ready for distribution, the group delivered 100 meal kits to Island Harvest, Long Island’s food bank. In total, 400 individuals were served that day.

Long Islanders facing hunger weren’t the only beneficiaries of the day. Each volunteer shared a collective sense of accomplishment in combatting food insecurity in their backyard. More importantly, the volunteers with disabilities felt pride that they have demonstrated that everyone plays a critical role in making their community more equitable for all—showing the true meaning of the quote from King that “Everybody can be great…because anybody can serve.”

Want to learn how to engage volunteers with disabilities? The Arc’s tip sheet Planning for Including People with Intellectual Disabilities in Volunteer Programs can help your organization get started.

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

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.

A photo of two woman in their police officer uniforms sitting on either side of a young girl with Down syndrome in front of a police station.

September 11 Day of Service Grantees Give Back and Help Prepare Their Communities

This past September marked the 20th anniversary of the September 11 attacks. To honor all who were lost, The Arc joined forces with local chapters of The Arc and other community organizations to develop inclusive volunteer projects centered around the September 11 National Day of Service and Remembrance (9/11 Day).

These projects aimed to strengthen and prepare communities for all types of emergencies. Their goal was also to challenge the perception that individuals with disabilities are only service recipients by demonstrating that volunteers with and without disabilities can and do serve their communities side-by-side.

The Arc’s 2021 9/11 Day grantees spent much of the past year preparing for their keynote September 11 weekend events. This year’s grantees included Egyptian Area Agency on Aging, Ridge Area Arc, The Arc of Hanover, The Arc Central Chesapeake Region, Athletes for Hope, Greater Susquehanna Valley United Way, The Arc of Palm Beach County, The Arc Nature Coast, and The Arc Tennessee.

These dedicated organizations served their communities in a variety of ways, including:

  • Hosting community-wide artistic events, which provided a space for community members to create collaborative art that honors those lost on 9/11 and promotes collective strength, resiliency, and remembrance
  • Designing handmade cards of appreciation for local first responders
  • Assembling and distributing emergency kits to local families
  • Distributing emergency preparedness information and templates to community members
  • Installing fire alarms for homeowners living in high-risk neighborhoods

Together, our grantees recruited over 1,000 volunteers, who spent close to 5,000 hours leading a variety of emergency planning activities that benefited over 4,100 individuals.

We would love for your organization to join us next year by building an emergency preparedness volunteer program in your community. We are currently accepting grant applications for the 2022 September 11 National Day of Service and Remembrance – and the deadline to apply is November 4. Learn more and apply here!

Photo of desks in a classroom with dim, moody lighting

Federal Court Blocks Iowa’s Law Banning Masking Requirements in Schools

DES MOINES, Iowa — A federal district court today blocked Iowa’s law prohibiting schools from requiring masks. The court ruled that the law violates the civil rights of children with disabilities, including children with underlying conditions, who are more vulnerable to severe illness or death as a result of COVID-19.

The decision makes clear that children have a right under Title II of the Americans with Disabilities Act and Section 504 of the Rehabilitation Act to equal access to their educations, which for some children with underlying conditions and disabilities, requires that schools implement universal masking requirements.

The district court recognized that “forcing children to bear the brunt of societal discord is ‘illogical and unjust’” and cited data showing that “the current level of the delta variant in Iowa has increased the infection rate and severity of infection. Some public schools in Iowa are experiencing COVID-19 infection rates at upwards of 60 percent that of last year’s total for the entire school year.” The court also cited data showing that the number of children hospitalized due to COVID-19 is also on the rise.

The decision comes in a case 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.

The following statements are from:

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

“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 are able to attend their neighborhood schools alongside their peers without disabilities without putting their health and their lives at risk.”

Rita Bettis Austen, legal director of the ACLU of Iowa:

“We are grateful to the district court for blocking this dangerous law, which put vulnerable kids in harm’s way and violated their civil rights in education. We are relieved that schools across the state will now be able to protect those kids as required by federal law. No parent should be asked to choose between the safety and health of their child and their child’s ability to go to school, but that’s exactly the position that this law put parents across Iowa in.”

Susan Mizner, director of the ACLU’s Disability Rights Program:

“This is a huge victory for our plaintiffs and all parents of children with disabilities who have been forced to choose between protecting the health of their children and ensuring they receive an education alongside their peers. This decision opens the door for schools across Iowa to take basic public health measures to protect their students. It also should send a message to other states that they cannot put politics above the rights and safety of students with disabilities. Disability rights laws were passed precisely for this situation – in which children with disabilities health and education would be sacrificed for the convenience of the majority. Banning the possibility that schools may require masks — in the middle of a pandemic — discriminates against school children with disabilities. All students with disabilities should be able to attend school safely, as federal disability rights laws guarantee.”

Catherine E. Johnson, executive director, Disability Rights Iowa:

“The order entered today restores our students’ with disabilities long-held civil rights of equal access to their education and full inclusion with their general education peers in the school curriculum and all other activities and programs offered by their school. Today is a monumental day for all plaintiffs, as well as all Iowans forced to choose between sacrificing their child’s health or education opportunities. Effective today, parents no longer have to make this impossible choice, their children are entitled to both.”

Photos and videos of some clients, attorneys, and organizational logos available here: https://drive.google.com/drive/folders/1-XIhBS5ZyNVRRh9lENyhqMbJi5PLqqky

More details about this case are here: https://www.aclu.org/press-releases/lawsuit-challenges-iowa-law-banning-schools-requiring-masks

The decision is here: https://www.aclu.org/legal-document/arc-iowa-v-reynolds-order-granting-temporary-restraining-order

This statement is here: https://www.aclu.org/press-releases/federal-court-blocks-iowas-law-banning-masking-requirements-schools

 

MLK Day logo that says "MLK Day of Service - Corporation for National and Community Service"

Individual Food Drives Help Feed Hungry Tulsans

As The Arc of Oklahoma watched COVID-19 infections rise in their state in the second half of 2020, they hoped restrictions would decrease in time for their MLK Day of Service event in January 2021. But as the year progressed and COVID cases continued their upward trend, the organization began laying the groundwork to transition their in-person event into a virtual one. Regardless of the format, the goal remained the same: make a notable dent in Tulsa’s 15.8% food insecure population.

MLK Day of Service volunteers

Interested in hosting your own MLK Day of Service event? Apply for a grant from The Arc and AmeriCorps to help organize your 2022 service project, give back to your community, and promote the inclusion of people with disabilities!

The Arc of Oklahoma’s Board of Directors, members of their Self-Advocacy Program, and community partners ultimately decided that individual food drives would maintain the integrity of the event while preserving the health and safety of all involved. So, “Individual Food Drive Hosts” set to work, collecting food items from families, neighbors, church members, and co-workers. Hosts then donated the items to their chosen pantry. By the end of March, 60 volunteers had administered individual food drives, serving nearly 430 of their fellow Tulsans.

The recipients of the individual food drives were not the only beneficiaries of the program. Volunteers from The Arc of Oklahoma’s Self-Advocacy Program also reaped benefits, growing professionally and personally. The majority of the volunteers have an intellectual and/or developmental disability (IDD) and experience difficulty communicating verbally and in social situations. Service projects such as these allow people with IDD to play a vital role in their communities though volunteering. As an added bonus, these individuals gain access to a welcoming and safe environment to practice social interactions and build the confidence needed to speak up for themselves and others.

Although the format of The Arc of Oklahoma’s 2021 MLK Day of Service event changed from their original proposal, it was a wonderful kick-off to a year of service, just as Dr. King had envisioned. Subsequent activities, such as the organization’s recent drive-through food distribution, have furthered the goal of alleviating hunger in Tulsa.

As The Arc of Oklahoma’s service events continue into the summer and fall, the organization’s true impact on food insecurity has yet to be seen. But if the following statement from a family who benefited from the food drive is any indication, the organization’s impact promises to be significant!

“I want to thank you with all my heart for how much you have helped us! You are wonderful people. Thank you for being so generous. Thank you to everyone who has helped us through you. You are angels to our family, and we are fortunate to know you!”

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

Vaccine Discrimination: Disability Advocacy Groups File Federal Lawsuit Alleging 6 Maryland Jurisdictions Discriminate in Vaccine Process

Today, The Arc Maryland, represented by Disability Rights Maryland, The Arc of the United States, and Brown & Barron, LLC filed a federal lawsuit alleging that six jurisdictions in Maryland, including Baltimore City, discriminate against people with intellectual and developmental disabilities (IDD) by denying them opportunities to access COVID-19 vaccinations inconsistent with the State’s Executive order and Vaccination Plan. This discrimination puts lives at stake and violates the Americans with Disabilities Act and Section 504 of the Rehabilitation Act.

Five counties and Baltimore City are identified in the lawsuit as excluding individuals with IDD in their list of who is eligible, preventing those with IDD from accessing vaccinations. The counties include, Queen Anne’s County, Carroll County, Garrett County, Somerset County, and Talbot County.

Ivis Burris has muscular dystrophy and requires support staff to come to her apartment to assist her with nursing needs. She lives in Baltimore City with her adult son who has Down syndrome. Under the state Vaccination Plan, they are both eligible for the vaccine under Phase 1B as individuals with IDD. But when Ms. Burris went to the Baltimore City COVID-19 website, she thought she wasn’t eligible to request the vaccine for herself and her son because the City excludes people with IDD from its list of those eligible for Phase 1B. Ms. Burris explains, “I want a fair chance like everybody else to live. My son deserves a fair chance to live. Considering our situation – I need a ventilator to breathe and my son is at higher risk because of his Down syndrome – it is really critical that we get the vaccine. Our disabilities put us at higher risk.”

“It is frustrating to have our state recognize people with IDD to be the 1B priority group for the vaccine, only for people with IDD to be denied equitable access to the vaccine from the counties in which they live. We hope this action will result in immediate change for the benefit of all,” said Ray Marshall, board president of The Arc Maryland.

It is well established that COVID-19-related fatality rates among people with IDD who test positive for COVID-19 are nearly three times greater than the mortality rates among the general population who are positive for the virus. People with IDD also face heightened risk because many rely on caregivers or direct support professionals who provide assistance with activities of daily living, for which social distancing is often not possible. Frequently, such caregivers serve multiple people raising risks of transmission. Despite advocacy from The Arc Maryland, people with IDD are not getting equal access to vaccines, compelling the need for the lawsuit.

“We need these localities to take immediate corrective action to fix their information; to fix forms that exclude individuals with disabilities from claiming eligibility and seeking vaccine appointments; to tell health department staff and others that people with disabilities are eligible and to assist them with obtaining the vaccine. The Americans with Disabilities Act was passed over thirty years ago with a purpose of ending historic inequities in health care. We need immediate action to protect lives,” said Lauren Young, Litigation Director for Disability Rights Maryland.

“Throughout this pandemic, The Arc has fought to ensure that people with disabilities nationwide have equal access to treatment and are not subject to medical discrimination,” said Peter Berns, CEO for The Arc of the United States. “As vaccines are distributed around the country, we will remain vigilant to ensure people with IDD are not discriminated against in this process.”

“Ensuring that vulnerable populations have access to life-saving vaccines, and that the State’s distribution plan prioritizing these populations is followed, is in accordance with Brown & Barron’s core principles and values of promoting access to quality healthcare for all. We are proud to stand behind The Arc in supporting these individuals and communities at this crucial time,” said Brian Brown, managing member of Brown & Barron, LLC.”

The Arc of the United States is the largest grassroots organization dedicated to advancing the civil rights of people with intellectual and developmental disabilities. The Arc Maryland is an affiliate of The Arc of the United States. There are 11 chapters of The Arc throughout the state, including The Arc Maryland.

Disability Rights Maryland (DRM), a non-profit 501(c)(3) organization, is Maryland’s designated Protection & Advocacy agency. DRM advocates to advance the civil rights of people with disabilities throughout Maryland. 

Brown & Barron, LLC is a civil justice law firm in Baltimore, Maryland.