Every March, we celebrate something powerful: Developmental Disabilities Awareness Month. It’s an opportunity to honor the diverse talents, dreams, and achievements of people with developmental disabilities. Whether it’s autism, cerebral palsy, Down syndrome, or learning disorders, these disabilities are part of the human experience – and the people living with them have stories that need to be heard.

The big picture: Here’s what drives us at The Arc: the fundamental belief that everyone deserves to write their own life story. That means real access to education, meaningful employment, quality healthcare, and genuine community connections. Right now, too many barriers stand in the way of these basic rights. This month, we’re turning up the volume on voices calling for change.

History: The roots of Developmental Disabilities Awareness Month can be traced back to 1987 when President Reagan first declared March as a month to raise awareness and “according to our fellow citizens with such disabilities, both encouragement and the opportunities they need to lead productive lives and to achieve their full potential.”

This year’s theme from the National Association of Councils on Developmental Disabilities is We’re Here All Year, emphasizing that community, accessibility, and opportunities for people with developmental disabilities should be recognized and championed every day.

What we’re doing: Change happens when people come together – and that’s exactly what The Arc’s nationwide network is doing. Want to meet some of the incredible individuals leading the way?

There’s Marcus, whose job search shows how talented, dedicated workers face discrimination. Lawrence, who’s showing the world what’s possible for athletes with disabilities. Ashley, who’s revolutionizing how we think about diversity and inclusion. Steve, who shows us that people with disabilities thrive when they can live independently in their communities, not institutions. Carlos, who persevered through immigration, bullying, and discrimination to graduate college and build his accounting career. And Mitch, whose voice on our board helps shape how we support people with disabilities.

Ready to be part of this movement? Here are three powerful ways you can help create change:

🧡 Donate to The Arc to support our advocacy and services, making inclusion possible.
⭐ Volunteer with your local chapter of The Arc to empower people with developmental disabilities.
📣 Share stories uplifting diverse perspectives using #DDawareness and #DDawareness2025.

“Segregation and discrimination still cast an ugly shadow over the lives of millions of people with disabilities. This month, we must amplify the voices calling for true inclusion—in our schools, workplaces, and communities. When we listen to self-advocates and remove unfair barriers, incredible contributions shine through.” – Katy Neas, CEO of 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, 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.”

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.

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.”

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.

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.”

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.”

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.

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.

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.

The Arc of the United States, along with our partners, recently filed an amicus brief in a critical case before the Texas Court of Criminal Appeals, Ex Parte Blaine Milam. This case highlights an ongoing issue in our criminal justice system: the unconstitutional execution of people with intellectual disability (ID).

Here’s what you need to know about this important fight for justice.

The Background

In 2002, the U.S. Supreme Court ruled in Atkins v. Virginia that executing people with ID violates the Eighth Amendment’s ban on cruel and unusual punishment. The Arc played a crucial role in this landmark decision, with our amicus brief cited by the Justices in support of their ruling. In Hall v. Florida (2014), the Court rejected an arbitrary cutoff for IQ scores in making the intellectual disability determination and emphasized the importance of courts using clinical standards in their analysis. In Moore v. Texas (2017 and 2019), the Court strengthened this precedent by emphasizing the need to rely on well-established scientific standards in making ID determinations in death penalty cases. The Arc filed amicus briefs in Atkins, Hall, and Moore to educate the Court on the clinical diagnosis of ID and ensure that people with ID are protected from the death penalty.

Despite these decisions, courts around the country too often continue to rely on stereotypes rather than scientific standards when determining ID in death penalty cases. This results in wrongful death sentences and executions. At the same time, people with ID are overrepresented at all stages of the criminal justice system, including being arrested, charged with a crime, and serving longer prison sentences once convicted than people without disabilities.

The Current Case

The case in Texas involves Blaine Milam, a death row inmate with intellectual disability. Mr. Milam was only 20 years old when he received his sentence and was scheduled to be executed in early 2019.  Following the Supreme Court’s decision in Moore v. Texas, the Texas Court of Criminal Appeals suspended his execution to determine if he met the definition of ID. The state’s initial expert concluded that Mr. Milam met the standard for an ID diagnosis, but the state later retained a new expert who disagreed. Despite Mr. Milam’s lawyers presenting reports from four medical experts on clinical errors in the evaluation done by the state’s new expert, that opinion was adopted, and the trial court decided to move forward with Mr. Milam’s execution. He is currently on death row.

Our amicus brief urges the court to rely on well-established clinical standards and Supreme Court precedent when determining ID, rather than outdated stereotypes.

Why This Matters

1. Fair Treatment: People with ID are at a higher risk of wrongful convictions and death sentences. They may be more likely to falsely confess to a crime, struggle to understand their rights, and have difficulty working with their lawyers to prepare their own defense.
2. Life or Death Stakes: In capital cases, an accurate determination of ID can literally mean life or death.
3. Use of Clinical Standards: Under Atkins, states are constitutionally required to ensure that people with ID are not sentenced to death nor executed. Despite Supreme Court precedent, some states continue to rely on unscientific standards for determining and defining intellectual disability, leading to wrongful executions. While this case pertains to the death penalty, it’s critical that court decisions that impact the lives of people with disabilities are properly informed and considered and not relying on stereotypes and misinformation.

The Arc has deep sympathy for the family and friends of victims in this case and supports appropriate punishment of all responsible parties. However, it is critical that courts utilize clinical standards and abide by the Constitution. In Mr. Milam’s case, the State’s latter expert did not rely on clinical standards for diagnosing ID.

The Arc’s Position

People with intellectual and developmental disabilities (IDD) must receive justice in our criminal justice system. We advocate so that:

• All criminal justice personnel are knowledgeable and trained about IDD.
• People with IDD have access to necessary supports, accommodations, treatment, and education throughout legal proceedings.
• People with ID continue to be exempt from the death penalty.
• States use accurate, scientific procedures to determine ID in capital cases.

Learn more in The Arc’s position statement on criminal justice.

Our Impact

The Arc has been at the forefront of this fight for decades. Since the Atkins decision in 2002, we’ve been actively involved in fighting for the rights of death row inmates with intellectual disability in federal and state courts across the country. We’ve filed numerous amicus briefs, appealed to lawmakers with clemency petitions, and continue to advocate more broadly for the rights of people with IDD in the criminal justice system.

The bottom line is that people’s lives will continue to be on the line if well-established clinical standards are not widely used to diagnose intellectual disability in our criminal justice system. We will continue our advocacy for justice for all people with IDD.