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Change Your World: Kick-Start Your Disability Advocacy With The Arc

For nearly 75 years, The Arc has been on the frontlines of the disability advocacy movement, fighting for the issues that matter most to people with disabilities and their families. The Arc is a grassroots organization with nearly 600 state and local chapters, all pushing for the full inclusion of people with disabilities on the federal, state, and local levels.

Every day, people with disabilities and allies across the country—just like you—are advocating to build a more inclusive world. And with everything that is on the line right now, we need every person who cares about disability rights and equality to step up and join our fight for inclusion for future generations. We need YOU!

So, what are you waiting for? You can join us RIGHT NOW and become a fierce disability activist! Here’s how:

  1. Find out who your members of Congress are: The Arc provides an easy way to see who your Senators and Representatives are. Head on over to our Action Center and enter your zip code in the Find Your Elected Official box on the righthand side. Once you know who your members of Congress are, visit their website and review their priority issue areas. Using this knowledge, you can tell them how important it is to include disability issues in legislative discussions.
  2. Connect with your state and local chapters of The Arc: Discover who your state and/or local chapters of The Arc are and where they are located. Visit their website to learn how you can get involved.
  3. Follow your members of Congress on social media: When Congress is in session, you can follow along with your members’ current legislative actions on places like Twitter—even if you don’t have an account! When they work on an issue that matters to you and/or aligns with The Arc’s Action Alerts, this is the moment when your outreach will make the greatest impact. Get in touch with them directly or through The Arc’s Action Center to share why they should support a position that benefits the disability community.
  4. Visit The Arc’s Action Center: The Arc’s Action Center ( houses all The Arc’s current action alerts. Clicking on the alert you are interested in will lead you to a page with more information where you can send a note to your members of Congress showing your support. You can use our prefilled template or write your own. Once you have filled in your contact information and completed your submission, click the button at the bottom to submit your note.

Now that you are equipped with The Arc’s four key advocacy steps, get out there and start advocating for the disability community! Remember, take pictures of your advocacy when possible and share them on social media. Don’t forget to tag The Arc of the United States in your posts.

We can’t wait to see you out there!


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!

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National Disability Rights Groups Applaud SCOTUS Decision in Perez v. Sturgis

Today, twelve national organizations which filed an amicus brief in Perez v. Sturgis Public Schools offered congratulatory and supporting statements in light of the  unanimous 9-0 decision of the U.S. Supreme Court (the Court) in support of plaintiff Miguel Perez. As recommended by disability advocates, the Court’s decision reverses the decision of the Court of Appeals for the Sixth Circuit to protect students with disabilities and will ensure that students are able to use civil rights remedies as provided under the Individuals with Disabilities Education Act (IDEA).

In response to the decision, the organizations offered the following statements:

Shira Wakschlag, Esq., The Arc of the United States, Senior Director and General Counsel: “Miguel Perez is just one of millions of students with disabilities who face a multitude of barriers in getting the supports and services they need to thrive in school and to build the future they desire,” said Shira Wakschlag, Senior Director of Legal Advocacy and General Counsel at The Arc. “These barriers, which include overt segregation and discrimination, force parents and children to become experts in self-advocacy and the law in order to get the education they are entitled to. Consistent with the language of the ADA and IDEA, today’s unanimous decision in Perez v. Sturgis Public Schools removes unnecessary burdens from families seeking relief and helps ensure that students with disabilities and their parents are able to pursue every avenue of justice available to them when their civil rights are violated.”

Selene Almazan, Esq., Council of Parent Attorneys and Advocates, Legal Director: “COPAA led the development of the amicus brief to ensure the Court heard from parents, advocates, and attorneys about the IDEA’s civil rights protections, including that the law does not require a student and their family to exhaust their administrative remedies to bring forward non-IDEA civil rights claims. The decision today affirms this critical aspect of the law.”

Elizabeth Athos, Esq., Education Law Center, Senior Attorney of Educational Equity: “The Court’s recognition that Congress does not require students with disabilities to litigate under IDEA before seeking relief under federal antidiscrimination laws that IDEA cannot provide is an important vindication of student rights. We are grateful to Miguel Perez for representing the interests of a great many children with disabilities, to COPAA for ensuring that the voices of students with disabilities and their families were expressed, and to the Court for applying faithfully the law written by Congress.”

Dr. Jacqueline Rodriguez, National Center for Learning Disabilities, CEO: “The National Center for Learning Disabilities applauds the Supreme Court’s decision in the Perez case to ensure all families have access to a high-quality education. We commend the Perez family for their steadfast commitment to protecting the rights of students with disabilities and their families. No family should have to endure what the Perez’ went through in order to maintain their legal rights but because of their efforts, families of students with disabilities continue to have the tools necessary to remedy a situation if their child is not provided their right to a free and appropriate public education.”

Dan Stewart, Esq., National Disability Rights Network, Managing Attorney: “Today’s U.S. Supreme Court’s unanimous decision is a common-sense affirmation of a student’s right to pursue claims with different remedies under different laws. The earlier court decisions prohibited Miguel from pursuing monetary damages under the Americans with Disabilities Act (ADA) after he had settled his education claims under IDEA, the Individuals with Disabilities Education Act. In recognizing those differences in the context of complex litigation, the Court provided much needed clarity that students like Miguel can seek full relief for the wrongs they suffered. We would like to extend a special congratulations to Disability Rights Michigan, the Protection and Advocacy agency for the state of Michigan who started work on this case back in 2017 for following it to a successful conclusion today.”

Signers of the Amicus Brief: The Arc of the United States, The Autistic Self-Advocacy Network (ASAN), Communication First, The Coelho Center for Disability Law, Policy and Innovation, Council of Parent Attorneys and Advocates, Education Law Center, Innisfree Foundation (Innisfree), Learning Rights Law Center, National Center for Learning Disabilities (NCLD), National Center for Youth Law (NCYL), National Disability Rights Network (NDRN), National Federation of the Blind (NFB).

Perez v. Sturgis Public Schools was argued before the U.S. Supreme Court on January 18, 2023. Miguel Perez is represented by Roman Martinez, Latham & Watkins. Also representing Perez are: Ellen Marjorie Saideman, Law Office of Ellen Saideman; Marc Charmatz and Leah Weiderhorn, National Association of the Deaf Law Advocacy Center; and, Mitchell Sickon, Disability Rights Michigan.

URL to SCOTUS decision:

URL to Amicus Brief:


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New Bill Would Advance Equity & Independence for Millions of Americans With Disabilities

People with disabilities and older adults want to live in their own homes and communities, and they deserve that right just like everyone else. Today, Sens. Bob Casey (D-PA), Chair of the Senate Aging Committee, Tim Kaine (D-VA), Sherrod Brown (D-OH), and Maggie Hassan (D-NH) along with Rep. Debbie Dingell (D-MI) introduced a critical bill – developed with The Arc and other advocates – that will fundamentally change how these populations live full and inclusive lives. The Arc stands unwaveringly behind the Home and Community-Based Services (HCBS) Access Act and urges Congress to pass this long overdue bill.

HCBS waivers were established under Medicaid in the early 1980s, and millions of people rely on it today for daily activities, such as dressing, bathing, meal preparation, taking medication, employment support, mobility assistance, and more. Yet HCBS has been chronically underfunded for years, resulting in a national shortage of direct care workers, years-long wait lists for access to services, and, ultimately, isolation that strips people with disabilities and older adults of their dignity.

“We know that everyone benefits when people with disabilities are a part of the fabric of their communities, not locked away in institutions or nursing homes,” said David Goldfarb, Director of Long-Term Supports and Services Policy at The Arc of the United States. “Yet this country has treated the independence of people with disabilities as an idea, not a right. One in four U.S. adults live with a disability. These are your neighbors, your relatives, your coworkers, your friends, and they deserve better. We applaud the bill’s sponsors, Senators Casey, Hassan, Brown, and Kaine, and Representative Dingell, for their commitment to helping people with disabilities live with dignity.”

The HCBS Access Act would:

  • Make home and community-based services a mandatory Medicaid benefit and increase funding for these services;
  • Provide grant funding for states to expand their capacity to meet the needs of people who prefer HCBS;
  • Make steps to improve the stability, availability, and quality of direct care providers to help address the decades-long workforce shortage crisis;
  • Provide states with resources so that caregiving workers—who are disproportionately women of color—have stable, quality jobs and a living wage;
  • Provide training and support for family caregivers; and
  • Create better evaluation measures to assess the quality of HCBS being provided.

To meet real-life people who are impacted by the inadequacies of HCBS, watch Susan’s story.


About The Arc of the United States: 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. Visit or follow us @TheArcUS to learn more. 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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The Arc Mourns the Loss of Disability Rights Icon Judy Heumann

With heavy hearts, and along with the entire disability community, we mourn the loss of Judy Heumann. Judy was the trailblazer of the disability rights movement. Her contributions as an activist, spokesperson, and federal official on the national and international stages created huge changes for people with all kinds of disabilities, impacting so many aspects of life and society.

“Judy was a long-time member of The Arc Family. Her passion and commitment to the disability community was profound. She was a powerful advocate and mentor to so many. Most recently she was working towards creating the National Museum of Disability History and Culture. I look forward to Judy’s vision becoming a reality. She will be greatly missed and fondly remembered. All of us at The Arc send our condolences to her husband Jorge and her entire family,” said Laura Kennedy, President, The Arc’s Board of Directors.

“Having worked with and alongside Judy for over three decades, I struggle with finding words to express the powerful impact of her years of advocacy, leadership, and groundbreaking achievements. Her legacy will live on for generations to come, partly because she nurtured future leaders of the movement so that the civil rights work would always move forward,” said Julie Ward, Senior Executive Officer for Public Policy.

Learn more about Judy’s leadership and life on her website and in reporting by NPR.

Close up of a person holding a small leather wallet in their left hand and pulling out a folded dollar bill

For Tyson, Marriage Changed Everything – Including His SSI

By Tyson from North Carolina

Married people with disabilities often experience penalties that force the couple to give up necessary benefits. Congress must address marriage penalties so everyone has the chance to marry without endangering the key supports they need to live in the community. Tyson is one of the many people with disabilities who have experienced this penalty, and he shares his experience below.

I have been getting Supplemental Security Income (SSI) since I was 19 years old. I’m now 46. These benefits are important to me; they help me pay for things I need, like rent and food. I have always been vigilant to report my earnings and document everything Social Security asked of me.

In 2021, I got married to the love of my life. My wife works for our local school system and is a wonderful partner. I didn’t know, though, that getting married would so greatly impact my SSI.

In late 2021, I got a call from Social Security. It was time to do the regular review, where Social Security asks the same questions over and over to make sure I am sharing all the information and earnings I have. During the call, I shared that I got married, gave them the date and information, and shared my wife’s income information.

Because I got married, I was told that my SSI would be cut from about $800 a month to $500. This was because of my wife’s income. But SSI is my only source of income, and it felt like I was punished for getting married. At the same time, I also found out my rent would increase by $200 a month. So, my wife and I had to do more with even less.

The Social Security office also told me I could get a Social Security Disability Insurance (SSDI) benefit through my dad’s work record. I spent hours tracking down school records to make sure Social Security had what they needed. Several times, people who worked at Social Security told me I would get SSDI. But, in the end, they rejected my application. I felt like I was lied to and that my time was wasted.

I do my best to pay my bills and live the best life I can. But I am trapped in poverty.

I can’t help that I have a disability, and I want to do more to contribute to our household and have planned to get a part-time job. I am worried that doing this will make me lose my SSI and other benefits. My wife and I have thought about moving to another state to be near other family members, but that may cause me to lose my other benefits, too.

I don’t know what to do, but I know that people should not have to live like this or be punished for marrying the person they love.

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The Arc Announces Acting CEO Named Amidst Leadership Transition

The Arc’s Board of Directors has named Ruben Rodriguez, the organization’s Chief Operating Officer, as Acting CEO while it undertakes a national search for new leadership.

Rodriguez joined The Arc in 2019, with nearly four decades of experience in operations and finance. He has an undergraduate degree in Accounting from Pace University, an MBA in Finance and Investments from the George Washington University, he is a Certified Professional Coach, and is currently working on a Masters in Disability Studies at City University of New York.

Rodriguez works closely with the organization’s leadership to support the mission, providing day-to-day strategic financial and operational management and planning to meet the organization’s short term and long term objectives. Included in his portfolio is oversight and hands-on leadership of finance, human resources, information technology, risk management, and broad program support. Rodriguez worked hand in hand with the staff and volunteer leadership teams to successfully steer The Arc through the COVID-19 pandemic, managing major changes in how the organization operated day-to-day, coupled with the financial uncertainty in the non-profit sector.

The Arc’s Board of Directors recently announced that its Chief Executive Officer, Peter Berns, would be leaving the organization upon expiration of his contract in February. Since 2008, Berns has been at the helm of The Arc, the world’s largest community-based organization of and for people with IDD and their families. Under his leadership, the organization has charted an ambitious path of growth and modernization as it carries out its mission of “promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes.”

Rodriguez will work alongside an established leadership team while the search for a new CEO is conducted. Meanwhile, the Board of Directors has put together a committee comprised of board members, chapter and disability community leaders, and national office staff and self-advocate representation to conduct a sweeping national search. Soon, they will be selecting a professional search agency to work with them.