A hand holds a small wooden blue house with a heart shape cut out of it.

Providers Who Care for People With Disabilities Deserve a Raise

This letter was originally published in the Syracuse Post-Standard. It has been adapted with permission from letter-writer Barbara Davis, a member of The Arc’s National Sibling Council.

I am the sister and legal guardian of a sibling with an intellectual or developmental disability (IDD). She resides in Onondaga County in New York and receives services from The Arc of Onondaga. I live in Virginia and have been her long-distance advocate and guardian for the past 20 years, since our parents passed away. I would like to share with you the support and care my family has been fortunate to receive from The Arc throughout my sister’s lifetime.

Our family pediatrician referred my parents to The Arc shortly after my sister was born in 1954, and I can’t imagine what her life (or ours) would have been like without the essential services The Arc provides.

From childhood well into adulthood, she attended The Arc’s Day Habilitation program, where she learned daily living and social skills, made friends, and enjoyed group activities. She bonded not only with other participants but also with dedicated staff, who encouraged her and supported her with respect and patience. To this day, a retired day habilitation staff member remains in touch and meets up with my sister and me when I am in town.

My sister lived at home with my parents until my father passed away and my mother was diagnosed with cancer. The Arc then assisted us in finding a residential placement. Before she died, my mother found great peace of mind knowing my sister would be living in a safe and supportive environment.

For the past 20 years, my sister has lived in a group home where she receives total care from direct support professionals. They provide meals, assist with such basic daily tasks as bathing and dressing, and provide transportation to doctor’s appointments. She also receives occupational therapy and physical therapy from The Arc. And the staff supports me by keeping me informed, helping me connect with my sister several times a week on FaceTime, and facilitating my in-person visits.

I cannot say enough about the dedication and hard work of the direct support professionals who have made such a difference in my sister’s life. At no time was this more apparent than during the COVID pandemic. When residents at my sister’s group home all came down with COVID, staff continued to show up every day to support and nurture the residents. Due to their wonderful care, all the residents recovered.

Without services and support from The Arc, my sister would have had a far more isolated life and fewer opportunities to develop her full potential. Instead, she is happy and sociable and “living her best life.” She loves her home and family at The Arc.

How To Help

Currently, chapters of The Arc and other nonprofit organizations that support people with IDD nationwide are experiencing a funding crisis. The amount that Medicaid reimburses these groups to pay dedicated direct support professionals is too low and not a livable wage. We need members of Congress, state legislatures, and governors to invest more resources in the essential services provided by The Arc and other nonprofits that support people with IDD and their families.

You can help by sending letters to your members of Congress and supporting your state chapter’s advocacy efforts.

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

The Arc Continues To Build Its National Inclusive Volunteering Programs

A crowd of volunteers prepares meals on long tables inside a large room. They are smiling and laughing as they work.

The Arc is thrilled to announce it has once again received funding from AmeriCorps, an organization that has worked for decades to make service to others an indispensable part of the American experience. With this grant, The Arc will continue to build both of its inclusive volunteering national initiatives: Martin Luther King, Jr. Day of Service and September 11 Day of Service and Remembrance.

The Arc’s MLK Day of Service grant focuses on alleviating community hunger while the September 11 Day of Service and Remembrance grant prepares their neighbors for their next emergency. For each grant, The Arc uses a competitive process to select chapters of The Arc and other nonprofits to participate. Once selected, sub-grantees implement inclusive volunteer projects in their local communities featuring volunteers with and without disabilities working side-by-side on their respective issues.

In 2023, The Arc selected 12 grantees for the MLK Day of Service grant and 12 grantees for its September 11 Day of Service and Remembrance project. Our 2023 MLK Day of Service grantees are ABC Hopes; AHRC Nassau; AHRC NYC; The Arc of Calhoun and Cleburne; The Arc Harrisonburg and Rockingham; The Arc Nature Coast; The Arc of Oklahoma; The Arc of the Quad Cities Area; Ridge Area Arc; STAR, Inc.; The Arc of South Carolina; and Youth Impact.

Our 2023 September 11 Day of Service and Remembrance recipients are: ABC Hopes; AHRC Nassau; Athletes for Hope; Easton Economic Development Corporation; Egyptian Area Agency on Aging; The Arc Greater Beaumont; The Arc of East Central Iowa; The Arc Muskegon; The Arc Nature Coast; The Arc of South Carolina; STAR, Inc.; and Volunteer New York.

Already in 2023, the grantees have hit the ground running, improving the lives of their neighbors through inclusive volunteering. Our MLK recipients kicked off their grant year by holding a keynote event on MLK Day of Service January 16. For this special day, these organizations developed and implemented projects seeking to reduce hunger among their neighbors. Some of their initiatives included:

  • Holding a PB&J making contests to see who could make the most sandwiches in five minutes. They later donated nearly 700 sandwiches to local homeless shelters.
  • Organizing drive-through pantries where participants received two to three weeks’ worth of meals. Over 600 individuals received food boxes.
  • Collecting non-perishable food items for emergency food bags. Each bag containing enough food for two meals for a family of five—approximately the ingredients for 1,000 meals!
  • Hosting a canned food drive at an athletic facility where participants received a free workout in exchange for their donation.

Overall, all grantees characterized the day as a complete success! Local citizens worked in unity for a common cause, neighbors were given the nourishment they needed, and most of all, everyone was included. The MLK Day of Service grantees will continue to focus on supporting hunger events for the remainder of the grant period. Similarly, our September 11 grantees are gearing up to start their projects within their communities. We can’t wait to see how both groups make a difference in their local communities this year! Learn more about The Arc’s volunteering initiatives and access free resources to get started with inclusive volunteering in YOUR community!

A selfie of a father and his teenage son, sitting in a car and smiling. The father is wearing sunglasses.

School Should Be a Safe Place for Students, but Isaac Was Assaulted

A selfie of a father and his teenage son, sitting in a car and smiling. The father is wearing sunglasses.Isaac has autism and mental health disabilities. Isaac sometimes gets very focused on certain things and struggles to adjust or focus on other things. To help him in school, a 504 plan was created so that teachers and other staff at the school would know how to support and redirect him safely.

When Isaac was 15 years old, that plan failed when he was put in a chokehold at his school by the school resource officer. Now 22, Isaac and his dad, John, shared with us about the incident and how it impacted Isaac’s school life.

Tell us about the choking incident. What happened?

ISAAC: I was in band class. Our school called students to the gym for a sex education class. The teachers told us you didn’t have to go if you didn’t want to, or if you signed a paper saying you weren’t going to go. I told them I didn’t want to go, but they still forced me to go. Since I didn’t want to be in the room, I went to the other side of the gym to nap until the class was over.

One of the teachers didn’t like that I was napping and ignoring the class, and they asked me which teacher I had for the period. I didn’t answer because I felt like the teacher was trying to get me in trouble, even though I had not done anything wrong. When I refused to respond, they called in two administrators. The administrators told me to give them my backpack and search through it. I refused to give it to them, as they did not have the right to take my things for no reason. They then tried to take my backpack from me forcefully. Finally, the school resource officer got involved. He took my bag from me.

I was still trying to get my bag back from them. I was not fighting back but resisting the situation. The officer forced me to the ground. He stood side-by-side with me, placed his left leg in front of both of my legs, and lifted his leg backward. This swept my legs from underneath me and caused me to land on my stomach. Then, since I was still resisting and trying to get back up, he got on top of me and started to choke me. I stopped resisting after about 10 seconds because I did not want to black out. After that, he let me go and began searching my backpack because he claimed that the administrators thought I had drugs or a bomb in my bag. I obviously did not have anything like that in there.

What happened after the incident?

ISAAC: The afternoon after the incident, the school told my mom that they had wanted to search my backpack, and I resisted this. They did not share that I was put in a chokehold. My mom told the school that I had a 504 plan that describes how to support me if I resist what the staff asks me to do; however, the administrators explained that they had so many kids with 504 plans that they could not have possibly known which students do or don’t have plans—or be expected to follow them in the heat of the moment.

Later that week, the school resource officer told me he was sorry for the run-in, but did not acknowledge that he or the school may have been in the wrong. He did at least try to get to know me better and have a civil relationship from that point on.

No one from the school ever told my mom or dad that I was in a chokehold or taken down by the school resource officer.

I didn’t tell them either. I was new to the school. I am also not a tall guy and, at the time, was 106 pounds. I was a new, short, small kid that no one knew. I didn’t want to be a target for bullying. People at my new school were already wary of me before the incident because of how I reacted to things and because I always wore a hood because I was always cold. After the incident, a rumor started that the officer had tackled me.

Afterward, people feared me. People began to worry and ask whether I would shoot up the school. I was okay with people being scared of me because I was just happy that people were not trying to bother me or bully me. And I had friends who knew me. However, I was portrayed as the bad guy by classmates and at school.

John, how did you and your wife discover the incident?

JOHN: I was at the high school several months later to speak to a class at the teacher’s invitation. When I was introduced, it was mentioned that I was Isaac’s father. A student at the side of the room said, “I know that dude. He’s crazy!” After that, I asked Isaac if something happened.

As a parent, I was extremely disturbed. Nobody likes to hear that their child is bullied or being targeted. I had a few experiences with bullying as a child, and no one wants that.

I’m also a professional disability advocate. At the time, I had also just watched the reports around Ethan Saylor, who was tackled and suffocated to death. There were also some reports of teachers being tough and not accommodating to students with disabilities because they don’t understand how to help them.

When my wife and I discovered Isaac was put in a chokehold, it was months later. At the time, there was not much more we could do but try to fix the rules that caused the incident. But that’s not enough—changing the rules does not change people’s attitudes.

When people think of autism, they see Rain Man or The Good Doctor. With Isaac, you would not know he had autism unless you knew him very well. He does not present how people typically think of someone with autism. As a result, he sometimes gets pushed around more than other kids.

The incident should never have happened. For the administrators to talk it down or brush it off without informing us is the most disturbing thing. He was assaulted—and no one bothered to tell us about it.

What do you want other people to know about the use of restraint and seclusion?

JOHN: I want them to know the same thing my father taught me: there’s never a reason to resort to violence. I have never yet seen, even in the worst situations, a need to escalate to violence because people are not responding clearly and immediately to demands. There are ways to get the desired result, but sometimes, you have to dig a little deeper. There are always other options.

What happened could have been averted if they had gotten to know my son. How many people use seclusion and restraint instead of getting to know the kids they support? Educators need a better sense of what is happening and how to help the kids they educate. In our home state of North Carolina, educators only need eight hours of training to work in a classroom for kids with disabilities. How can you expertly support kids with only eight hours of training? Certainly, more could be done to prepare teachers.

ISAAC: I want other kids with disabilities to know the same thing my father taught me: there’s never a reason to resort to violence. And that they should wait until your parents get there to speak with the school. Quite literally, your parents are your lawyer. Teachers won’t always listen to you. It would be best to have your folks with you to argue for you and advocate on your behalf. To parents, you may be angry about an incident, but you still need to be civil and work with the school because otherwise, the school won’t help your child; they may suspend or expel them instead. You must do your best to be civil and willing to work together to keep your student at school.

JOHN: I’m proud of my son for what he just said. Previously, I spent time as a trustee on a school board. People would ask over and over what school is the best for kids with disabilities. The critical difference in outcomes for kids with or without disabilities is parents being involved. They know who we are and that we are not just angry parents but also active and involved in the school. It changes the educators’ attitudes, and they see our child more as a person. They become more willing to engage with parents and intervene before things blow up.

Parents should also know what their and their kids’ rights are and be able to call people out when needed. Isaac is my fifth child. I know our rights and how to advocate with him because I made mistakes and learned with my previous children. Sometimes, administrators will say things that do not respect the rights of kids and parents. They may push boundaries that they should not do so and rely on parents not to know their rights. It can be intimidating. Parents must know their and their kids’ rights and advocate.

Comcast logo

Powerful Partnership Leads to Change: Comcast NBCUniversal and The Arc Continue to Make a Difference Through Digital Skills Training

For people with intellectual and developmental disabilities (IDD), digital access and skills are a critical component of gaining independence. In 2022, The Arc and Comcast NBCUniversal once again teamed up to open digital doors for and with people with IDD.

The Arc and Comcast have a long-standing partnership to do this work. The Arc’s national network of nearly 600 chapters provides vital resources and services to individuals with IDD and their families to promote greater independence and opportunity in the community, and through this partnership, since 2017, more than 2,579 clients have received basic digital skills training at 19 sites around the country.

The program continues to expand what’s possible for people with IDD in their professional and personal lives—giving them the tools to chart their own course, just like we all want to do.

Expanding Self-Determination and Independence

Cathy and Ross, The Arc of Greater Indianapolis (Indiana)

Cathy and Ross each live very independent lives in their community, with their chapter supporting their day-to-day activities and routines. Both deeply wanted more time in their respective homes to unwind and safely manage their own needs without staff hovering around them in case they were needed. As chapter staff member Rita Davis noted, “After you’ve been around others all day, as much as you may like them, there are times when you just want to be alone!” However, both of their families were concerned about their safety in the home with no support staff nearby. Each was coached in how to use tools like the Ring Camera and messaging on their phones to monitor their own environments and reassure/check in with family or chapter staff if they needed assistance. Now, Ross is enjoying greater independence and exploring how to self-administer his own medications, and Cathy can decompress by herself home. Their families are thrilled—and relieved—to have a system in place that will keep them safe while supporting them to live more independently and manage their daily lives.

Courtney, The Arc Southern Maryland

Courtney lives with her mother and has been dependent on her for all her scheduling and transportation needs. Unfortunately, her mother was in a car accident which left them without a vehicle. Courtney has many regularly scheduled appointments that she must get to each week. Through her coaching, she was provided with and taught how to use a smartphone that she could use to reach out to others in her network for rides, find and map out public transportation, and schedule and confirm some of her own appointments with her cardiologist, other doctors, and therapists. Her mother has been able to shift some responsibility to Courtney, and an added benefit of her new phone is the ability to stay better connected to friends and family.

India, The Arc Southern Maryland

India lives with her parents and is nonspeaking, so she has historically relied on various vocalizations and pointing to communicate her needs and desires with her caregivers. Her coaching focused on the adoption of new alternative and augmentative communication (AAC) tools to broaden her options for expressing herself. Currently, India is exploring how to use several AAC apps and for the first time ever, she can communicate using words through Touch Chat, which uses a digital word board with photos. This will impact every single aspect of India’s life and give her the tools to advocate for her needs, build relationships, and direct her own life.

Her father John said, “We can better understand her, and we’ll feel more confident she’ll be ok when she’s not with us.”

Professional Development and Furthering Employment Skills

Rochelle, The Arc of Greater Indianapolis (Indiana)

Rochelle’s initial tech coaching sessions focused on completing online employment applications. To her delight, she landed a job at Arby’s consisting of 20 hours a week cleaning the lobby and dining areas. While she was glad to have the job, she was quickly becoming a little bored with it but did not have the computer skills needed to advance in her role. Her coaching sessions continued as staff worked to expand her digital skillset. As a result, after just two months on the job, she was promoted to the drive-through window to take customer orders on the computer. She also uses their computer system to clock in and out, retrieve pay stubs, and complete mandatory trainings. Where Rochelle was initially nervous about using a computer, she now approaches new digital challenges with an improved sense of optimism and confidence and can continue to progress in her career.

Sidney, New Star Services (Illinois)

Sidney wanted to learn how to program his watch to remind him when it was time to go on breaks and lunch and when to clock out for the day and head home, so that he did not have to rely on coworkers or his job coach to remind him. He has learned how to stop, start, and reset timers on his watch and as a result has become far more independent with his time management on the job. Not having to rely on his coworkers or supervisor to keep him on schedule has been a great source of pride for Sidney and has enabled him to turn his attention to learning new employment-based skills.

Bobby, The Arc of Weld County (Colorado)

Bobby has had no access to technology besides his phone. He only recently restarted attending a day program once per week, and his only social interactions were at work. His coaching focused on not only building skills to explore hobbies like music and coding, but also how to expand his network and build relationships he can maintain outside of in-person activities. He learned about internet safety, using various apps, and using Gmail and Zoom. His newfound digital literacy has opened the door for him to take on leadership roles as well. He is now being considered for a board position with The Arc of Weld County, of which virtual access and reviewing materials via email is required. His wife has also received coaching for her needs and goals and is the longest current employee at the agency!

“When we provide access to digital skills training, we create opportunities and pathways to independence that can be life-changing, especially for those living with disabilities,” said Dalila Wilson-Scott, Executive Vice President and Chief Diversity Officer of Comcast Corporation and President of the Comcast NBCUniversal Foundation. “Partnerships like the one we’re proud to share with The Arc – and as a result, the many lives we’re able to help impact – are at the heart of what drives us each and every day at Comcast. We’re so very honored to continue to grow our work together and help enrich even more lives.”

Comcast’s partnership with The Arc is part of Project UP, the company’s comprehensive effort to address digital inequities and help build a future of unlimited possibilities. Backed by a $1 billion commitment to reach 50 million people, Project UP is focused on connecting people to the Internet, advancing economic mobility, and opening doors for the next generation of innovators, entrepreneurs, storytellers, and creators.

The Arc logo

Blazing a Path Forward: The Arc’s New Access, Equity, and Inclusion Plan

The Arc is on a journey to become a more diverse organization and movement that is fully accessible, equitable, and inclusive. Since embarking on this journey, we have made vital steps, committing to improving our staff’s racial and ethnic diversity, strengthening outreach to diverse communities, creating a dynamic Access, Equity, and Inclusion (AEI) Team, and investing in new partnerships to advance AEI.

As we celebrate this progress, we also re-dedicate ourselves to our commitment to equity and to answering the key questions that drive our work:

  • What does true inclusion and equity look like for all people with intellectual and developmental disabilities?
  • How do we ensure we are centering the voices and experiences of people living at society’s margins?

To help us meet these questions, we have developed a new Strategic Action Plan for Advancing Access, Equity, and Inclusion. This plan is the result of a multi-year process, which involved gathering the opinions and experiences of our community members, chapters, and people and groups from diverse and marginalized communities.

Our plan is available in English and Spanish, with more extended and summary versions also available.

This strategic action plan will guide our path forward to meet changes and challenges for years to come. It will keep us accountable and steadfast on our journey to becoming a more vital, accessible, equitable, and inclusive organization. It will help us grow in our leadership in AEI, ensure The Arc becomes more representative of diverse and marginalized communities, and guide us to promote social justice and follow the lead of marginalized groups, communities, and activists.

This plan supports our Strategic Framework for the Future of The Arc. We also hope this plan will guide our 600 chapters nationwide on their AEI journey.

Now more than ever, The Arc must do its part to strategically build the disability rights movement into a more diverse force for change. We proudly present our Strategic Action Plan for Advancing Access, Equity, and Inclusion as a critical guide on this journey.

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

The Arc Partners With Comcast NBCUniversal to Increase Access to Culturally Competent Special Education Services for Students of Color with Disabilities

Washington, D.C. – As special education students face the continuing challenges of the COVID-19 pandemic, The Arc is pleased to announce that it has been awarded a $200,000 grant from Comcast NBCUniversal to connect families of color and families from low-income households with students with disabilities to valuable educational advocacy resources. The grant will also help to ensure The Arc@School’s continued growth and success in assisting students and families for many years to come.

To expand support for students with intellectual and developmental (IDD) disabilities, the organization will provide 250 scholarships for The Arc@School’s Advocacy Curriculum. The Arc will also engage in a cultural competency review of its current curriculum to inform the next iteration, increase accessibility for families and improve the impact on student education. With Comcast NBCUniversal’s support, The Arc@School aims to disseminate special education resources to at least 350,000 people in 2022.

“We are proud of our long-standing partnership that supports The Arc in its mission to provide resources for all students with disabilities – and their families – so they can live independently and actively participate in their communities,” said Dalila Wilson-Scott, EVP and Chief Diversity Officer, Comcast Corporation.

Far too many kids are being left behind during the pandemic, particularly students with disabilities from marginalized groups. The Arc fights for all students to receive the benefits of public education in the least restrictive setting possible, as mandated by federal and state law. The Arc@School program supports families of students with IDD to successfully navigate the special education system and get the supports and services they need to thrive in school.

“Equal access to education for all students is an undeniable right in this country. The Arc is committed to nothing less for students with intellectual and developmental disabilities. We are thankful for Comcast NBCUniversal’s continued support of our education advocacy and broad impact on the program, especially during this time of constant uncertainty in education. Families of all backgrounds need quality support in navigating special education – and we must ensure that we provide these resources in a way that reflects the unique experiences among us,” said Peter Berns, Chief Executive Officer of The Arc of the United States.

About Comcast Corporation

Comcast Corporation (Nasdaq: CMCSA) is a global media and technology company that connects people to moments that matter. We are principally focused on connectivity, aggregation, and streaming with 57 million customer relationships across the United States and Europe. We deliver broadband, wireless, and video through our Xfinity, Comcast Business, and Sky brands; create, distribute, and stream leading entertainment, sports, and news through Universal Filmed Entertainment Group, Universal Studio Group, Sky Studios, the NBC and Telemundo broadcast networks, multiple cable networks, Peacock, NBCUniversal News Group, NBC Sports, Sky News, and Sky Sports; and provide memorable experiences at Universal Parks and Resorts in the United States and Asia. Visit www.comcastcorporation.com for more information.

The Arc advocates for and serves people wit¬¬h 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 row of $20 bills

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Coca-Cola Foundation

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

The Arc logo

Federal Support Can Seed Big Improvements in Mobile Response

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.