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The Arc on Outcome of Election and Path Forward for People With Disabilities and Their Families

/in /by The Arc

With the election of President Trump and a new Congress, The Arc of the United States will continue to partner with all elected officials, advocating and educating that disability is a part of our shared human experience—one that touches every family, every community, and every generation regardless of political party. When people with disabilities have the support they need to live, learn, work, and participate fully in their communities, all Americans benefit.

Yet, every day, people with disabilities and their families face remarkably challenging circumstances. Children with disabilities are being denied educational supports that will ensure they get a strong foundation for their lives ahead. The unemployment rate of adults with disabilities is 2 times higher than the rate of non-disabled people. Nearly 700,000 people are stuck on years-long waiting lists for home and community-based services, which allows them to live independently in their communities. Caregivers are stretched to the breaking point, balancing work, financial stability, and the fight to secure essential services. These aren’t abstract policy issues—they are daily realities that affect families in every neighborhood, town, and state across America.

We have work to do—and The Arc will never stop advocating for the policies that people with disabilities need to thrive.

The Arc has deep roots in communities nationwide. For 75 years, our strong network of self-advocates, families, and professionals has shared their expertise with elected officials to ensure policy decisions reflect the pressing, serious needs of everyday Americans. We’ve seen firsthand that the most enduring progress comes when all leaders recognize disability rights as human rights.

Logan, a young, disabled man, is sitting outdoors in a wheelchair. There's a cow standing next to him. Logan has a big smile on his face.

Logan Dreams of Starting His Business, But the SSI Asset Limit Holds Him Back

/in /by The Arc

“My entire life, I have been proving people wrong about what I can do.”

Logan, a young, disabled man, is sitting outdoors in a wheelchair. There's a cow standing next to him. Logan has a big smile on his face.Born at 27 weeks and just over 2 pounds, Logan was small enough to fit in the palm of his mom’s hands. He spent a month in the neonatal intensive care unit on heart monitors and chest tubes, and his lungs collapsed twice. The doctors told his mom that Logan would never talk or speak and that he would be a “vegetable.” But they were wrong.

With the support of his family, friends, and various aides, Logan grew to be a happy and healthy kid, and he discovered his life’s work.

Logan’s passion in life is livestock, and he’s ready to open his business.

In middle and high school, Logan joined the Future Farmers of America (FFA), a youth organization that prepares its members for leadership, growth, and career success through agricultural education. With the support of his teachers, who fostered his passion in this area and believed in his skills, he not only achieved his state level degrees but also his American degree, the highest FFA degree available. Now, Logan wants to start his own cattle company and knows that nothing is going to stop him from being successful if he can get started. He dreams of having his name on everything in his business—from the truck to the stock.

“My family raised cows growing up, and I got hit by the bug to learn more. My senior year, I showed and sold my first steer. I knew immediately that cattle was what I was meant to do. I want to give back to those who gave everything to me and be someone kids in the industry can look up to.”

But the Supplemental Security Income (SSI) asset limit is limiting Logan and stopping him from pursuing his dreams.

SSI provides critical support to Logan and nearly 8 million other people with disabilities and older Americans. Logan uses the money he gets from SSI to pay his rent and food. But most importantly, SSI qualifies Logan to use Medicaid to help pay for his health care needs. Without it, his family would struggle to pay for the things he needs for his daily life.

Right now, outdated rules stop people who get SSI from being able to save money. Unmarried people like Logan who get SSI can only have $2,000 in assets, which includes money in bank accounts, retirement accounts, and other savings. Married people can only have $3,000 in assets.

Logan, a young man in a wheelchair, is reaching his arm out to touch a cow that's standing next to him.The current SSI asset limit means that Logan can’t open his own cattle business, since even owning one steer would put him over the limit.

“I want to do what I want to do and how I want to do it…. I want to make a living. I also have other dreams – to get married and have kids, to have a life like everyone else has.”

At 25, Logan’s not done—he’s just getting started to prove everyone wrong. But he needs Congress’ help to make his next dream possible by passing laws to increase the asset limit.

“Congress hasn’t done anything in 40 years to raise this limit. It’s time to take care of business and get this change done. I’ll keep going, even if I have to call 125 people. The words ‘I can’t’ are not in my vocabulary.”

Congress is considering bills that would raise the SSI asset limit. It would raise the limit from $2,000 to $10,000 for single people like Logan, and it would increase the limit from $3,000 to $20,000 for married couples who get SSI.

For Logan, this change would be huge, as it would allow him to start his business.

Support Logan’s dream and the dreams of other entrepreneurs with disabilities across the country. Contact your member of Congress to raise the SSI asset limit.

We’re Family Caregivers of People With Disabilities & Here’s What We Want You to Know

/in , /by The Arc

They’re cheerleaders and crisis managers, nurses and advocates, therapists and service coordinators. They’re not just family members—they’re lifelines. Family caregivers are the backbone of care for people with intellectual and developmental disabilities (IDD), and their stories often go untold.

This November, for National Family Caregivers Month, we’re spotlighting seven individuals caring for their loved ones with IDD. Their insights challenge how our society views disability, family, and community.

The Arc’s 2023 Family and Individual Needs for Disability Supports (FINDS) survey highlights the need for better support systems for caregivers and their loved ones:

  • Over 50% report very high or extreme stress levels
  • 90% have seen their careers impacted
  • More than 4 in 5 have had to provide increased support

But numbers only tell part of the story. In this blog, family caregivers of people with IDD invite us into their worlds—where challenges and triumphs coexist and where love drives everything.

The Rewards & Challenges of Caregiving

Caregivers open up about the unexpected joys and daily hurdles they face.

Debbi Harris posing with her son Josh.

Debbi and Josh

Debbi Harris, mother to Josh (31) with complex medical needs: “It’s captivating to watch how Joshua navigates the complex world around him with what we consider to be so many limitations. But he has learned to use what he has in the best way he can to communicate, to gather information, to relate pain or contentment or frustration—and he’s proud of it. He has been through more medically than most people will ever experience—yet he comes back undiminished. The challenging aspect of being a parent or caregiver of a person with IDD is how the rest of the world perceives Josh. They limit his humanity and do not invest the time it takes to get to know him as the unique human that he is.”

A mother holds her young son and they are both smiling. The background is pure white with bouquets of flowers.

Dena and Eli

Dena Drabek, mother to Eli (6) with a congenital heart defect: “Eli has undergone three open-heart surgeries, seven cardiac catheterization procedures, and one round of ECMO life support. Watching your child endure so much from the very beginning takes a major emotional toll as a parent. On the flip side, we have a bond unlike most because of what we have been through together. This path has also encouraged us to celebrate all of life’s little moments and be grateful for every opportunity along the way.”

Ray Hemachandra, father to Nicholas (24) with autism and intellectual disability: “Being a caregiver for someone with intellectual and developmental disabilities is no different from being a caregiver for anyone else. You work to meet the individual’s needs; honor their strengths, their uniqueness, and their beauty; and appreciate every day and every moment spent together. You ask for help when you need it, too. A challenge is asking for help in a society and culture that see lesser value in disability and in disabled lives. A challenge is navigating and overcoming a scarcity-based public support system that constantly, relentlessly requires your loved one’s deficits be documented and emphasized.”

 

What Caregivers Want You to Know

Caregivers share candid truths about their lives and the support they need.

An older woman sits next to her sister, who has disabilities. They are looking at each other and smiling.

Patricia and Barbara

Barbara Davis, sister to Patricia (70) with intellectual and physical disabilities: “Better funding is needed but is a low priority in state and federal budgets. Families caring for someone with IDD are just like other families — they want each member of their family to be safe and healthy and to have the opportunity to reach their fullest potential.”

Em Braman, mother to Eden (17) with Down Syndrome & OCD: “The needs of the person you are caring for always come first so you may cancel or ask to reschedule get-togethers frequently,” she shares. “This is not due to not wanting to get together with the other person, it is because my loved one comes first. Our lives just look different and just because it looks different does not mean it is bad or less meaningful. My family enjoys life and enjoys living life together.”

Two women posing together for a selfie, smiling.

Jamie and Sam

Jamie Mistretta, sister to Sam (32) with intellectual disability and autism: “When a support service is unavailable, this limits my sister just as much as it limits me and my family. Her support services are what give her access to her everyday life. When a sibling or other family caregiver is sick or otherwise unavailable, our loved one still needs and deserves support.”

Mariela Azarpira, mother to Samir (22) with intellectual disability, hydrocephalus, and apraxia: “I want to tell people that it is important to fight for them, advocate for them, speak for them, include them, don’t let them give up on them, and don’t let them label them,” she asserts. “People with disabilities are perfect the way they are, so don’t outcast them and don’t allow anyone to do it. They matter too.”

Debbi Harris: “Many of our loved ones require attention 24/7 and staffing that care is a national crisis at this time. It can be exhausting. Caregivers experience chronic illnesses related to stress much more widely than others. I have chronic migraines and other stress-related health conditions. I try to write, or play the flute, or read, but I cannot focus long, and I am needed all of the time. I often feel lonely and isolated. I have my immediate family around me but find myself craving relationships I see others experiencing on social media. Even if I had the opportunity, though, I am usually exhausted and overwhelmed. I don’t have the capacity to participate socially in a normal way, and I don’t fit in. People are afraid I will talk about my son. They think their problems will seem too small or superficial, so they avoid me because they still do need to vent, as we all do. And, the aspects of caregiving I need to talk about, there is no one to listen.”

How Caregiving Shifts Worldviews

Caregivers reveal how their experiences have reshaped their outlook on life.

A woman and her daughter stand together outside, smiling.

Eden and Em

Em Braman: “As my child gets older, I see accessibility as a much larger issue than when she was younger. It frustrates me that while she can physically access places, there are minimal accommodations to assist her in accessing the understanding needed in those locations. For example, a museum without plain language guides for the displays or a listening session where materials are not sent out ahead of time for her to read and reread for understanding or when a medical office will not let her come in ahead of time for a preview of the office to calm her anxiety.”

A mom and her son with disabilities standing together in a swimming pool, smiling.

Mariela and Samir

Mariela Azarpira: “I am a mama bear 24/7. I am in contact with his program and aide every day asking questions like, ‘How was his day? What else do we need to do for him?’ It’s important to have clear communication with each person he is involved with daily. I want him to thrive and make sure everyone is on the same page regarding my son.”

Ray Hemachandra: “For parents of children with disabilities, the responsibility for two lives carries across the lifespan—not just caring about that person’s life, but full responsibility for the care of that life. For example, the normal fear around losing your job, getting ill, or dying is much more about what happens to your child, including your adult child, if and when that happens. Who is going to care for your child? Who is going to love your child? I wouldn’t trade my son for anything or anyone in the world. But I carry all that with me every day.”

What People Get Wrong

Caregivers set the record straight on common misunderstandings about their lives and loved ones.

Dena Drabek: “I often sense that others feel pity for our situation. The commitment I have to my son is not about what I have to give up. It’s about investing in him, nurturing his potential, and helping him discover his own unique gifts so that he can share them with the rest of the world.”

A dad and his son stand together in front of hay bales. They are holding hands and wearing t-shirts that say, "Disabality Rights are Human Rights."

Nicholas and Ray

Barbara Davis: “There sometimes is the assumption that acting as my sibling’s caregiver is only a burden. It can be difficult, but I love my sibling. Being involved in her care is extremely rewarding.”

Ray Hemachandra: “My son isn’t a burden. He’s a blessing. When he is supported appropriately for his needs, he can contribute just as much to his family, to his community, and to our world as anyone else. He wants to know you and be your friend.”

Jamie Mistretta: “I am often asked, ‘Do you think your life would be different if your sister didn’t have a disability?’ I cannot even imagine a life where my sister doesn’t have a disability. My sister’s disability is a large part of who she is; it is a large part of her character. Disability or not, my sister will still be my maid of honor at my wedding someday. I love her for everything she is and everything she is not.”

This National Family Caregivers Month, let’s do more than recognize these hidden heroes. Let’s listen to them, support them, and work towards a world that values their essential role. Their stories show us what unconditional love and true family mean.

A young, Black man with Down syndrome stands in front of a fabric backdrop. He is hold a microphone as if he is ready to sing.

An All-Too-Common Story of Untapped Potential

/in /by The Arc

A young, Black man with Down syndrome stands in front of a fabric backdrop. He is hold a microphone as if he is ready to sing.Marcus Stewart’s smile lights up the room as he talks about his dreams and his latest TikTok dance moves. At 23, the young man from Waldorf, MD aspires to be a pastor or a DJ, and he loves cleaning. He also wants to make enough money to get his own apartment. But Marcus, who has Down syndrome, faces an uphill battle in achieving his goals—particularly because he can’t find paid employment.

“One big misconception is that I am not able to follow directions, learn, or be employable,” Marcus says. His words cut to the heart of the challenges faced by many in the intellectual and developmental disabilities (IDD) community.

The statistics paint a stark picture. Working-aged people with disabilities have significantly lower employment rates—around half the rates of their counterparts without disabilities. When considering people of all ages, the gap widens further. In 2023, people with disabilities were three times less likely to be employed.

These numbers don’t reflect Marcus’s capabilities or work ethic. Through his workplace readiness program, he has volunteered in a diverse range of roles that showcase his adaptability and willingness to learn. He’s stocked shelves at Big Lots, sorted clothes at a thrift store, assisted with administrative tasks at a church, performed housekeeping duties at a hotel, tackled landscaping work, carried out janitorial duties at an assisted living facility and public schools, and helped with food prep at Texas Roadhouse.

“I take care of myself and protect myself and my family,” Marcus asserts. “I show up to work on time, I’m polite and kind, and I’m focused on my work.” He’s dedicated to each role he takes on, yet he can’t get past the biases and discrimination of hiring managers and AI hiring tools.

Marcus has valuable skills and a lot to offer to any workplace. He excelled in school and, as he shares, “I loved math and reading.” He was also active in sports, participating in track, tennis, and bocce. Marcus finished school at 18, graduating on time with his class, and has been in workforce readiness programs ever since.

A young Black man with Down syndrome wears a light blue button up. He is standing with his arm around his mom, who is wearing a hot pink jacket. They are both smiling.Marcus’s mother, Tawana, has been his fierce advocate from day one. “When he was first diagnosed, his first geneticist told me that he’s not going to amount to much. But I said my son will get every opportunity that’s available,” she recalls. “I made myself present in workshops and other groups of parents of children with Down syndrome. I signed him up for sports. I showed up and was very vocal.” She is frustrated by the lack of opportunities for Marcus in adulthood. “Give him a chance,” she pleads. “He gets up every day without an alarm, makes his own meals, never missed a day of school, takes great care of his nephew and our two dogs. He’s more responsible than most people I know, and he’s capable of so much.” Tawana tears up and Marcus puts his arm around her shoulders.

Her message to employers is clear: “Show him what to do and give him a chance to learn.” She adds, “The value in investing in this community is incredible, it makes the company a better place for everybody. More exposure helps educate people and create more acceptance of people with disabilities.”

Despite his employment challenges, Marcus maintains a rich social life. Beyond his TikTok presence, he enjoys spending time with friends. “My friends are nice to me and we do fun things like play Uno, go out to eat, go bowling, and go to the movies,” he says. In his free time, he likes to “relax, watch P Valley and Power, play football and basketball, and take care of my mom and my big sister.”

Tawana urges other parents of children with disabilities: “Seek out resources that are available and most importantly advocate for your child. Advocacy and education are two things I’ve been doing since he’s been born. You have to advocate—no one else is going to do it. The best cheerleaders are the family.”

A young, Black man with Down syndrome wears a black short sleeve polo shirt and stands outside of a house. He is wearing glasses and has a serious look on his face.As we celebrate National Disability Employment Awareness Month and Down Syndrome Awareness Month, Marcus’s story is a powerful reminder of the untapped potential within the IDD community. His resilience, skills, and can-do attitude, coupled with his family’s unwavering support, show what’s possible for people with disabilities.

“I’m smart, I’m strong, I’m thoughtful and respectful. I love my family,” Marcus says, summing up his character in a few words. “I want to work so I can be independent and get my own apartment.” His dream is what we all wish for—autonomy, respect, and the opportunity to contribute meaningfully to society.

Marcus Stewart is ready to show the world what he can do. Are we ready to give him—and countless others like him—that chance?

Red, white, and blue stickers that say "I Voted."

Federal Court Strikes Down Restrictive, Suppressive Texas Voting Measures in S.B. 1 That Limited Voting Assistance

/in /by Jackie Dilworth

Media Contacts:
The Arc, dilworth@thearc.org
LDF, media@naacpldf.org
Delta Sigma Theta Sorority, Inc., inquiries@deltasigmatheta.org
ArentFox Schiff, nathan.carlile@afslaw.com
Ray Shackelford, rshackelford@haul.org

The Arc of the United States, along with The Arc of Texas, The Legal Defense Fund (LDF), Delta Sigma Theta Sorority, the Houston Area Urban League, and ArentFox Schiff, today applauded a decision delivered late Friday, Oct. 11, that struck down certain provisions of S.B. 1, an egregious Texas law that sharply limits voting access.

In the decision from the United States District Court for the Western District of Texas, the judge ruled that several provisions of S.B. 1 that restrict and criminalize voting assistance violate the Voting Rights Act and therefore cannot be enforced.

“This ruling marks a historic victory for voters with disabilities,” said Shira Wakschlag, Senior Director of Legal Advocacy and General Counsel at The Arc of the United States. “The court’s decision demonstrates a deep understanding of S.B. 1’s harmful impact, forcing Texans with disabilities to choose between inadequate voting options or forfeiting their right to vote entirely. The judge’s ruling, influenced by powerful testimony from The Arc’s members, recognizes how S.B. 1 has erected barriers at every stage of the voting process for people with disabilities. Critically, the court understood the far-reaching consequences of S.B. 1, which not only puts care attendants at risk of prosecution but threatens the ability of voters with disabilities to live in the community. The Arc celebrates this landmark decision and remains committed to defending the voting rights of people with disabilities in Texas and nationwide.”

“This victory for voters with disabilities affirms, yet again, what a difference self-advocacy can make,” said Jennifer Martinez, Chief Executive Officer of The Arc of Texas. “I want to thank our members and allies who provided testimony. Without it, the outcome could have been very different, but your willingness to speak up about the unfair barriers you face changed history today.”

“This is a major victory for Texas voters, especially voters with disabilities, voters with low literacy, and voters with limited English proficiency,” said Jennifer A. Holmes, Deputy Director of Litigation at the Legal Defense Fund. “Many of these voters are in Black and Latino communities and face a myriad of obstacles to voting. We are thrilled the court affirmed their right to unfettered assistance to make casting a ballot possible without fear of prosecution of those who assist them.”

“Judge Xavier Rodriguez’s decision in our challenge to Texas Senate Bill 1 is a pivotal victory for democracy and voters who rely on assistance,” said Elsie Cooke-Holmes, National President of Delta Sigma Theta Sorority. “While we celebrate this important win, our work is far from over. We urgently need federal legislation, like the John Lewis Voting Rights Act and the Freedom to Vote Act, which enshrines the comprehensive voting rights reforms our democracy desperately needs following the evisceration of those protections in the 2013 Supreme Court decision in Shelby County v. Holder.”

“The burdens imposed by this law on marginalized communities – specifically voters who could have trouble reading or completing their ballots without assistance – are real and stark,” said J. Michael Showalter, partner at ArentFox Schiff. “The Court heard voluminous testimony as to how the state’s failures to think about how S.B. 1 would work in practice precluded Texans committed to exercise their fundamental right to vote from doing so. We are proud that the Court stepped in and made clear that no one should be criminally prosecuted for providing assistance to voters to allow them to cast their ballots.”

The provisions the Court struck down in Friday’s decision include burdensome disclosure requirements on anyone assisting voters and a ban on compensation for individuals who provide voting assistance. The Court also struck certain language from an oath that Texas law requires assistors to swear under penalty of perjury before they can help voters, a requirement that puts these assistors at risk of criminal prosecution and chills the ability of voters to receive the assistance they need to vote.

The Court ruled that because it is too close to the election to change forms and ballot envelopes, voting assistance disclosures in those materials can still be enforced during the election, but individuals cannot be investigated, prosecuted, or assessed civil penalties related to these requirements. The ruling requires the Secretary of State to stop using the forms after the 2024 election.

Shortly after Texas lawmakers passed S.B. 1 in 2021, the Legal Defense Fund, The Arc of the United States, Reed Smith, and, later, ArentFox Schiff, filed a lawsuit on behalf of Delta Sigma Theta Sorority, Inc., the Houston Area Urban League, The Arc of Texas, and an individual election judge, challenging multiple provisions of the suppressive law. In addition to the provisions restricting voter assistance, the lawsuit also challenged provisions that limited early voting hours, banned 24-hour voting, eliminated drive-thru voting centers, limited multiple drop-off locations for mail ballots, limited the distribution of mail-in ballot applications, imposed burdensome identification requirements on voting by mail, and expanded the authority of partisan poll watchers. Other disability rights and civil rights organizations also challenged the law in companion lawsuits.

Although the Court has yet to rule on all the challenged provisions, it issued prior orders striking down S.B.1’s identification requirements for voting by mail and restrictions on door-to-door canvassing. These rulings have been appealed.

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Founded in 1940, the Legal Defense Fund (LDF) is the nation’s first civil rights law organization. LDF’s Thurgood Marshall Institute is a multi-disciplinary and collaborative hub within LDF that launches targeted campaigns and undertakes innovative research to shape the civil rights narrative. In media attributions, please refer to us as the Legal Defense Fund or LDF. Please note that LDF has been completely separate from the National Association for the Advancement of Colored People (NAACP) since 1957—although LDF was originally founded by the NAACP and shares its commitment to equal rights.

The Arc of the United States advocates for and serves people with intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy, and other diagnoses. Founded in 1950 by parents who believed their children with IDD deserved more, The Arc is now 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. Through the decades, The Arc has been at the forefront of advances in disability rights and supports. There are over 7 million people with IDD in the United States, which encompasses over 100 different diagnoses. Visit www.thearc.org 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.

Delta Sigma Theta Sorority, Inc. was founded on January 13, 1913, by 22 collegiate women at Howard University to promote academic excellence; to provide scholarships; to provide support to the underserved; educate and stimulate participation in the establishment of positive public policy; and to highlight issues and provide solutions for problems in their communities. Since its founding, more than 350,000 women have joined the organization, making it one of the largest predominately Black women’s organizations in the country. Delta Sigma Theta Sorority, Incorporated has more than 1,050 chapters located throughout the United States and globally. The major programs of the Sorority are based upon its Five-Point Programmatic Thrust, which focuses on Economic Development, Educational Development, International Awareness and Involvement, Physical and Mental Health, and Political Awareness and Involvement. To learn more about Delta Sigma Theta Sorority, Incorporated, visit www.deltasigmatheta.org.

As a champion for underserved and marginalized communities, the Houston Area Urban League has a proud history of delivering impactful, lasting benefits to individuals across Greater Houston, regardless of age, gender, race, ability, or background. Our mission is to empower Black people and other marginalized groups to achieve economic self-reliance, equality, influence, and civil rights. We envision a community where these groups experience true equality in opportunities, justice, and prosperity. HAUL operates seven core programs focused on Education and Youth Development, Workforce and Economic Development, Workforce Training, Housing, Social Justice, Health and Wellness, and Entrepreneurship.

A doctor speaks with a patient in a wheelchair. A nurse is pushing the wheelchair.

Close the Gaps: People With Disabilities Are a Special Medically Underserved Population

/in /by The Arc

People with intellectual and developmental disabilities (IDD) face issues with not having access to the health care they need throughout their lifespan. There are millions of children with IDD across the country. In some states, families wait up to 20 years to get access to behavioral health services. Sadly, people with IDD struggle to get good health care, and many individuals also lack access to dental care. In fact, less than 70% of dentists have treated people with disabilities. Those with IDD are at higher risk for oral diseases due to service gaps, low income, and other factors. This can cause heart problems and worsen health. Additionally, some research shows that adults with IDD may die 24 years earlier than those without IDD.

These disparities have led to a push to classify people with IDD as a special medically underserved population (S-MUP). The HEADs UP Act stresses the need for this formal designation. As an S-MUP, the IDD community would get more attention and resources in health care planning and access. There would be more funding and training for federal health programs, and it would also require investing in medical sub-specialties that support people with IDD. The bill would fund scholarships and loan repayments for providers who care for people with disabilities.

The Arc’s policy team has worked to provide feedback on the bill to uplift the needs of people with IDD. We have worked with coalitions to submit comments to agencies on oral health and health A headshot of Dr. Adiaha Spinks-Franklin, a Black woman wearing a black jacket over a blouse and smiling.care for people with IDD. Achieva, a chapter of The Arc, held a roundtable about the HEADs UP Act. It included medical experts, like Dr. Adiaha Spinks-Franklin, and Congressman Seth Moulton.

Dr. Spinks-Franklin is immediate past-president of the Society for Developmental and Behavioral Pediatrics (SDBP) and one of 758 board-certified developmental-behavioral pediatricians. During an interview with us, she shared, “If we don’t act, we will see a worsening behavioral health crisis. It will cause a huge drop in school attendance, especially for Black, Indigenous, and Brown boys.  But there is hope if we pass this bill. We can increase the number of developmental-behavioral pediatricians. We can address the current behavioral health crisis by providing more funding for providers and resources for people with IDD.”

Dr. Spinks-Franklin leaves us with this: “Residencies should teach that caring for people with disabilities is normal. People should stop viewing disability as something to cure. We should have people trained to take care of all people instead of a subset.”

Make sure your members of Congress know what this bill means to people with IDD. You can take action here.

 

Orange graphic that says "The only r-word we know is respect."

The R-Word: Why Language Matters and How We Can Do Better

/in /by Jackie Dilworth

Have you ever caught yourself or someone else casually using the R-word? You know the one—that outdated term that’s somehow still in our vocabulary. It might seem harmless, but it’s far from it. The R-word is loaded with hurt, discrimination, and a painful history. Here’s why it’s time we ditched it for good.

A Word With a Painful Past

Let’s rewind to 1961. “Mental retardation” made its debut as a neutral medical term for people with intellectual disabilities. But it quickly became a cruel insult, carrying the weight of discrimination and prejudice.

The early to mid-1900s were a dark time for people with intellectual disabilities. They faced forced sterilization, institutionalization in inhumane conditions, and were often denied basic rights and dignity. Society viewed them as burdens to be hidden away, not as valuable members of our communities.

We’ve made some progress—like Rosa’s Law in 2010 replacing “mental retardation” in federal language with “intellectual disability”. It was a step in the right direction, but the R-word stubbornly lingers in our vocabulary and even in some state laws.

At The Arc, when people with disabilities speak up about language that hurts them, we listen and we change. Our name and terminology have evolved throughout our history because the very people we serve tell us what respect looks like. The Arc is not an acronym. The Arc stands for and with people with disabilities and their families, over the course of their lifetimes. And just as an arc is dynamic, so too is our commitment to adapting our language. When someone tells us a word hurts, we change. It’s that simple, and that important.

More Than Just a Word

Make no mistake: The R-word is hate speech. It’s a slur against people with intellectual disabilities. But somehow, it’s still sneaking its way into everyday conversation, social media posts, and even hit TV shows. It’s become so normalized that many people, especially younger folks, don’t even blink an eye when they hear it.

This is deeply troubling and harmful. When someone uses the R-word as an insult or joke, they’re equating intellectual disability with something negative or laughable. It’s not just offensive—it’s dehumanizing. Terms like “idiot” and “moron” also have roots in demeaning people with disabilities. These words cause real pain and perpetuate harmful stereotypes. They’re not cool, not right, and definitely not funny.

The Ripple Effect

Words have power. They shape how we see the world and the people in it. When we casually use terms like the R-word, we’re not just being insensitive—we’re actively contributing to a culture that excludes and discriminates against people with intellectual disabilities.

Think about it. If you constantly heard a core part of your identity being used as shorthand for “stupid” or “worthless,” how would you feel? It’s dehumanizing. The R-word is a constant reminder of the discrimination and challenges people with disabilities face every day. From employment discrimination to healthcare disparities, its use reinforces a system that often fails to see the humanity in people with intellectual disabilities.

The Comeback Nobody Asked For

After years of progress, the R-word is making a comeback, especially online and in pop culture. It’s like watching history repeat itself in real-time. It undermines years of advocacy and reopens wounds for those who’ve fought hard for respect and inclusion.

People with disabilities have made it clear: this word is hurtful and unacceptable. It’s not “just a joke” or “no big deal.” The R-word serves as a stark reminder that despite progress, discrimination and mistreatment persist. That’s why we have urgent work to do to create a truly inclusive society.

The only r-word we know is respect.

So, What Can We Do About It?

  1. Check yourself: We all have biases and bad habits. Take a moment to really think about the words you use and what they might mean to others.
  2. Speak up (kindly): If you hear someone use the R-word, don’t just cringe silently. Speak up! But remember, the goal is education, not humiliation. A simple, “Hey, did you know that word can be really hurtful?” can go a long way.
  3. Spread the word to end the word: Share this blog post with friends and family. Sometimes, all it takes is one person to start a ripple effect of change.
  4. Celebrate diversity: Instead of focusing on limitations, let’s talk about the amazing contributions people with intellectual disabilities make to our communities every day.
  5. Keep learning: The conversation around disability and language is always evolving. Stay curious and open to learning more.

Remember, changing the way we talk isn’t about following trends. It’s about fostering a society where every person is treated with dignity and respect. It’s about recognizing the inherent worth of everyone. At The Arc, the only R-word we should know is respect. And that’s something worth talking about—and acting on—every single day.

A head shot of a young woman with Down syndrome, smiling.

Equal Lives, Equal Rights: Challenging Organ Transplant Discrimination Against People With Disabilities

/in , , /by The Arc

Over 100,000 individuals in the United States are waiting for an organ transplant, including many people with intellectual and developmental disabilities (IDD). Thousands of people die each year waiting for a transplant. Unfortunately, many people with IDD get rejected at such high rates that it has become an ethical medical issue.1 For example, a study showed that individuals with IDD were 62% less likely to receive a kidney transplant.2

The National Council on Disability released a report about organ transplant discrimination. The report shared beliefs that some medical professionals had about people with disabilities. Some doctors believe that those with IDD would not be able to comply with postoperative care. Other doctors believe that disability impacts the likelihood of having a successful transplant.3 However, research has shown that these are myths. Many studies show that transplant outcomes for people with disabilities are not worse than those who do not have disabilities.4

Thankfully, some professionals understand that having a disability does not mean a person should be less eligible for an organ transplant. Thanks to organ donations, people like Charlotte Woodward can survive and live fulfilling lives!

A head shot of a young woman with Down syndrome, smiling.Charlotte is an advocate with Down syndrome who was born with a congenital heart defect. She had to undergo multiple surgeries as a child and finally received a heart transplant in 2012. The journey to get her heart transplant had its challenges, but she used her experience to fight to make sure everyone had access to organ transplants. To make this a reality, Charlotte spoke with policymakers about creating a bill about organ transplant discrimination. Members of Congress created the Charlotte Woodward Organ Transplant Discrimination Prevention Act. This bill would prohibit health care entities from denying a person access to a transplant due to their disability.

For decades, The Arc has supported legislation, regulations, and policies that address organ transplant discrimination. Charlotte’s bill’s introduction in Congress was successful. The Arc will continue to advocate that organ transplant discrimination is wrong and needs to end.

Charlotte is also a member of The Arc’s National Council of Self-Advocates. Charlotte offers this advice for other self-advocates who are tirelessly working to advance legislation: “Never give up. If you don’t speak up for yourself and don’t demand what you want and need, you’re not going to get it.”

If you are a self-advocate looking for effective advocacy tips, join our National Council of Self-Advocates.

 

 

 

1 https://www.washingtonpost.com/national/health-science/people-with-autism-intellectual-disabilities-fight-bias-in-transplants/2017/03/04/756ff5b8-feb2-11e6-8f41-ea6ed597e4ca_story.html

2 https://jamanetwork.com/journals/jamasurgery/fullarticle/2801511

3 https://www.ncd.gov/assets/uploads/reports/2019/ncd_organ_transplant_508.pdf

4 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9932938/

A woman in a wheelchair is holding a tablet and showing it to a man seated next to her who is holding a clipboard. They are in a work setting.

How and Why to Celebrate National Disability Employment Awareness Month

/in /by The Arc

A woman in a wheelchair is holding a tablet and showing it to a man seated next to her who is holding a clipboard. They are in a work setting.Each October, during National Disability Employment Awareness Month (NDEAM), we celebrate the contributions, achievements, and potential of people with disabilities in the workplace.

Employees with disabilities are dependable, loyal, and eager to learn—and research shows that their inclusion in the workforce improves overall employee retention rate and morale. However, people with disabilities have been marginalized and misunderstood for generations, and up to 85% of people with intellectual and developmental disabilities (IDD) remain unemployed.

How to Celebrate NDEAM in October (And Year-Round)

Here are a few ways you can observe and celebrate National Disability Employment Awareness Month.

Learn about the value of people with disabilities in the workforce.

Share your disability employment story and help someone share theirs.

The Arc has many disability employment success stories from both employees and employers. Read them and share them with your networks.

If you have a friend, family member, coworker, or neighbor with a disability who is employed, encourage them to share their story. Let’s help more people understand the value that people with disabilities bring to the workforce. Share your stories on social media using #NDEAM or even reach out to your local news. Be sure to join The Arc’s celebration by following us on Facebook, Instagram, X (formerly Twitter), and LinkedIn and engaging with stories from the people we serve.

Look at your company’s disability hiring practices.

  • If you’re not actively hiring people with disabilities, here’s a tip sheet to help you get started.
  • Review your company’s policies and processes to make sure they are inclusive and comply with the Americans with Disabilities Act.
  • Train managers and supervisors to make sure they understand implicit bias and their role in fostering an inclusive workplace.
  • Post about NDEAM in your newsletter, on your website, or on social media to help increase awareness.
  • Participate in Disability Mentoring Day, which takes place on the third Wednesday in October.

Donate to organizations that actively promote workforce inclusion for people with disabilities.

The Arc has been fighting for the inclusion of people with IDD, such as autism, Down syndrome, and cerebral palsy, in all stages of life. This starts with education advocacy and resources, which is the foundation for meaningful opportunities, and continues into employment access. Support our work!

Is There a Theme for NDEAM in 2024?

Each year, the U.S. Department of Labor’s Office of Disability Employment Policy selects a theme for National Disability Employment Awareness Month. The 2024 NDEAM theme is “Access to Good Jobs for All” to affirm that disabled workers must have access to good jobs, every month of every year.

A diverse classroom with a teacher sitting on the floor next to two students, who are looking at a workbook.

The Ultimate Back-To-School Guide for Families of Children With Disabilities

/in /by The Arc

The excitement of a new school year is in the air! For parents of children with disabilities, this time brings unique challenges and opportunities. At The Arc, we know that proper preparation can make all the difference in your child’s growth and success. Here are some practical tips to help you and your child start the school year off right and carry that momentum throughout the year.

  1. Have an open chat with your child about the upcoming year. What are they excited about? What’s making them nervous? Use this conversation to set clear expectations. You can even create a visual calendar together, marking important dates and milestones.
  2. Gradually ease back into the routine. Establish a consistent before and after-school routine that supports your child’s needs, like a calm morning routine, a dedicated homework space, or bedtime wind-down ritual. Keep your weekend plans light early in the school year to give your child time to relax.
  3. Give your child’s Individualized Education Program (IEP) a thorough review. Any changes your child has experienced over the summer or since the last IEP? Any assistive technologies that could help? Don’t hesitate to request an IEP meeting before school starts if needed. Keep a journal or digital record of your child’s progress, challenges, and successes throughout the year—it could be invaluable for future IEP meetings and tracking growth over time.
  4. Connect with your child’s teachers and service providers before school starts. Share your child’s strengths, interests, and hopes for the year. Collaborate on a communication plan that works for everyone. If your child is transitioning to a new school, start planning early. Work with the current and future schools to ensure a smooth transition and take your child on a school tour to familiarize them with their new environment. If your child is attending a before or after care program, establish a relationship with those staff, as well.
  5. Help your child develop self-advocacy. Teach them developmentally appropriate ways to express their needs and preferences at school, such as asking for a break when overwhelmed or requesting clarification on instructions.
  6. The first few weeks might be bumpy as everyone settles in. Give your child (and their educators) time to find their rhythm. Keep a close eye on how things are progressing. If you notice issues, don’t hesitate to speak up. Open and respectful communication can help address challenges early and bigger problems later.
  7. Recognize and celebrate your child’s efforts and achievements. This positive reinforcement can boost confidence and motivation throughout the school year.
  8. Build a support network for your child and yourself. Social connections and the sharing of experiences, tips, and resources can be incredibly valuable for your family. Your state’s DD Council, local chapter of The Arc, and inclusive extracurricular activities can help open doors to other families of children with disabilities.
  9. Feeling unsure about your child’s services or supports? The Arc@School is your go-to resource for understanding your rights and finding help when you need it. Knowledge is power—empower yourself to ensure your child gets the education they deserve.

Remember, your well-being matters too. Taking time for yourself, whether it’s a quiet moment with a book or a chat with a friend, can help you stay energized and focused as you support your child’s educational journey.

You’re not alone in this—we’re here to help every step of the way. Let’s make this school year a great one!