Roll of red, white, and blue "I voted" stickers on a white table

You Have the Power: Go Vote!

It’s almost time to cast your vote in the midterm election. Are you ready?

According to the Centers for Disease Control and Prevention, 1 in 4 adults have a disability. Any cohort of this magnitude carries significant political power, especially during a midterm election year such as 2022.

People with disabilities and their family members recognize that their votes help elect the officials who will run the government, make laws, decide where government money gets spent, and much more. All these decisions have a significant impact on the lives of people with disabilities, their families, and the workforce that supports them.

The Center for American Progress found that nearly 62% of voters with disabilities cast a ballot in the November 2020 election, compared to just 56% in 2016. This increase is in spite of the fact that people with disabilities continue to face barriers to casting their ballot, such as complex mail-in voting procedures, inaccessible voting locations, inexperienced polling workers, guardianship laws, transportation barriers, and more.

This fall, the disability community and their supporters have another opportunity to make their voices heard through their vote. In this current midterm election cycle, all 435 seats in the House of Representatives and 35 of the 100 seats in the Senate are on the ballot.  Additionally, eligible voters in 36 states will vote to install new governors. That’s a lot of opportunity for our community to shape the future of our country by simply going to the polls.

To help you navigate this election season, The Arc has created several resources and put together essential information about voting. At thearc.org/vote you can find the following materials in plain language in both English and Spanish:

  • The Arc’s Disability Voting Guide
  • The Election & You: Thinking About Disability
  • Sample Questions for Candidates

You can also check out The Arc’s Civic Action Center to find your state’s upcoming election information, your closest polling location, and verify if you are registered to vote (make sure you know your states deadline!).

Let’s keep the momentum going and show our civic power again this election season. Take the first step and pledge to vote today!

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Guiding The Arc Through Lived Experience With Disability

“Nothing about us without us” is a theme of the disability community, reminding the world that people with disabilities expect and deserve autonomy over their lives. This includes actively participating in the organizational structures that advocate for and with people with disabilities.

With this guiding principle in mind, The Arc established its National Council of Self-Advocates (NCSA) in 2012. NCSA abides by the “nothing about us without us” motto by creating a space where people with intellectual and developmental disabilities (IDD) can provide guidance to The Arc and offer their unique disability perspectives. The council also strives to provide professional growth opportunities to its members, such as access to job opportunities and other leadership roles.

NCSA is led by Chloe Rothschild, a national board member for The Arc, and it is supported by Juan Guerrero, a policy associate for The Arc. As a sibling of an individual with a disability, he understands and values the need to amplify the perspectives of people with IDD. This understanding has motivated him to constantly create new growth opportunities for NCSA’s approximately 300 members.

NCSA’s members are from all over the U.S., and many credit the group for providing a space to meet other self-advocates and freely discuss their thoughts on certain topics. Hearing from one another is essential to personal growth, especially in the advocacy space.

At the beginning of 2022, the council set a goal of providing speaking engagements, both to NCSA Officers and the general council, and they also decided to gather more frequently. Each monthly meeting centers around a topic relevant to self-advocacy, such as employment, voting, interacting with law enforcement, leading with a disability, and more. In a recent session, three council members presented on employees with disabilities assuming leadership positions in the working world. From time to time, members will be called upon to review materials created by The Arc.

General members can apply for a two-year officer position. If elected, they are expected to attend officer meetings, and they are also charged with setting the monthly agenda and preparing presentations for the regular monthly meetings. Recently, the current officers have begun leading and facilitating these monthly sessions.

Using the knowledge and experience gained in this space, NCSA member Mark got the opportunity to speak at the Disability Vote Submit. He was also able to help with The Arc’s toolkit on self-determination, and he helps doctors understand how to work with people with disabilities.

Another member, Nathaniel, advises NCSA has deepened his understanding of the federal policy system. With his newfound knowledge, he plans to serve as a mentor to people with disabilities by pursuing their Bachelors, Masters, or even a PhD.

There’s no better time to join than right now! We’re currently growing and would love for anyone interested in joining to come check us out. The only requirement for acceptance is that you must identify as a person with a disability.

Learn more about NCSA and click here to join as a general member. Current members can also apply for an officer position this fall. We look forward to shaping the future of disability with you!

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All About Congressional August Recess

When you are young, recess signals a break from the drudge of work. It is a welcome chance at a bit of freedom to play and escape the school day. But when you are a member of Congress, recess takes on an entirely different meaning – one that is important for disability advocates to know.

For U.S. senators and representatives, recess is a time of the year when legislators leave their duties in Washington, D.C. behind and return home to the districts and states they represent. But members of Congress are not home to relax and recharge for the fall legislative session. They are there to travel around their districts, attending a variety of community events, and hearing from as many constituents as possible.

You can use this time to educate your federal elected officials on how critical policy priorities impact people with disabilities, which may include you and your family. The Supplemental Security Income (SSI) Savings Penalty Elimination Act and the importance of home and community-based services (HCBS) are just a few of the critical policy priorities.

Your stories can empower these decision-makers to return to Washington with the concerns of the disability community top of mind.

So, what are you waiting for? The following tips can help you make the most of your advocacy during August congressional recess!

  • Find out who your members of Congress are. The Arc provides an easy way to look them up. Visit our Action Center and enter your zip code in the Find Your Elected Official box on the right-hand side of the screen. You can also follow your members of Congress on social media by finding their Twitter handles.
  • Attend town hall events. Many members of Congress host town hall events during August recess to hear from their constituents. You can find townhalls in your area here or look on your elected official’s website.
  • Download The Arc’s August Congressional Recess Toolkit. The free toolkit offers everything you need to advocate effectively, including links to action alerts, plain language factsheets on key issues, tips to engage, and sample letters to the editor that you can personalize and submit to local newspapers.
  • Connect with your local chapter of The Arc. Find your state or local chapter to learn more about advocacy opportunities in your area. They may have meetings and other activities you can join.

This August recess presents an excellent opportunity for sharing your perspective on important policy issues and educating members of Congress in your hometown on what living with a disability is like. With just a little preparation, you can prepare your legislators to fight for disability rights in the fall!

 

A woman in a motorized chair plays with a small dog on a grassy field in front of a community of houses

Why the ADA Matters to Me: A Conversation With Steve Ferreira

For the past 32 years, the Americans with Disabilities Act (ADA) has protected the civil rights of people with disabilities.

Recently, we spoke with Steve Ferreira, who shared how the ADA has impacted his life and how he hopes to ensure that the promise of the ADA is being kept in his community!A man wearing a pink button down shirt smiles and is in a motorized wheelchair.

Steve was born with cerebral palsy in Taipei, Taiwan in 1988. He graduated from Bellevue College in 2013 with an Associate Degree with a concentration in Communications. He is currently attending Central Washington University to obtain his Certificate in Accessible Studies.

In November 2011, Steve started a non-profit called Beyond Disabilities to further his goal of disability awareness. As a motivational speaker, Steve aims to raise disability awareness within every community he addresses. In addition to his motivational speaking, Steve has been involved in athletics. He has competed in international competitions both in the United States and Europe, earning the bronze medal in shot put in 2008 and the gold medal in discus in 2010.

Q: What does the ADA mean to you in your life? Why is it so important to you?

The Americans with Disabilities Act (ADA) was enacted in 1990 and is a civil rights law that prohibits discrimination against people with disabilities. This includes jobs, schools, transportation, and public and private places that can be accessed by the public. It gives protection to all people with disabilities.

It is a law that can be quoted and used when there is a situation where people with disabilities are not receiving the services they need or do not have access to facilities. It is a powerful law.

In 2016, I contacted my hometown, the City of Renton, Washington, to put in signs at a dangerous crosswalk close to my home where I had almost been hit by a car. But nothing happened at the time.

Two years later, while crossing the street in my wheelchair, I was hit by a car that made a right turn onto the road. There was a red light but no warning about watching for pedestrians. I was okay, but my legs would be gone if my wheelchair had not had a leg guard.

I contacted the city again and told them what happened. Using the ADA to back me up, I was able to get the city to install a turning light at the crosswalk. It took two more years for the city to take care of the situation, but I felt a sense of accomplishment when it did.

I drive my wheelchair all over and have over 10,000 miles on it. I drive around 18 to 25 miles a day. If not for the ADA, we would not have cutouts in the crosswalks and lifts on the buses. All it takes is one step to stop me from getting where I need or want to go.

Q: How does the ADA impact you at school and work, in getting around, using transportation, and accessing public and private places?

I typically use public transportation and it’s important for the buses to have lifts installed. There are times when I’m waiting for a bus and the bus will arrive and the lift is broken. Everyone else can enter the bus, but I have to wait sometimes an hour for another bus with a working lift. I joined a committee for people with disabilities in our Metro system to address this issue. Though the committee discussed this issue, nothing was accomplished. I eventually left the committee because I was so frustrated.

On another note, it’s discouraging to have a brand-new building built that does not plan well for accessibility. For example, when I try to access the building, sometimes, the building does not have an automatic door. The doors are typically very heavy, and it is hard to maneuver them when you are using a wheelchair. People need to be more diligent when constructing buildings to make sure they are accessible, and they need to plan to ensure they do not block accessible paths or routes when constructing buildings too!

Q: Tell us about the accessibility program you are taking. What inspired you to pursue this study? What is your capstone project about?

I am currently taking classes at Central Washington University for a certificate in Accessible Studies. There are classes in accessibility and user experience, universal design, accessible information design, and a capstone project.

I have finished the first three classes and I am currently working on my capstone project. My capstone project is entitled “The Importance of Disability Awareness as Part of Diversity, Equity and Inclusion Programs in the Corporate Setting.” I am comparing three companies’ diversity, equity, and inclusion programs and analyzing their attention to disability awareness. It is eye-opening how companies are paying attention to other minority groups but ignoring disability.

I decided to take this program to educate myself on the ADA and how it relates to the empowerment of people with disabilities. Unfortunately, there is still a lot of discrimination against people with disabilities.

Q: Do you plan to advocate for accessibility for people with disabilities? What do you hope to do?

I have done some consulting with local cities, but with my certificate, it will help to have credibility and will add to my resume. I would like to help cities adhere to the rules and regulations of the ADA and thereby help the disability community.

Q: What do you want others to know about the ADA and why it still matters?

The ADA is important to everyone, not just people in wheelchairs or who use other mobility aids. All of us may at some point have a “temporary” disability and the ADA protects them as well. It is a social justice issue.

There are also “invisible” disabilities that are not obvious when first encountered. People with invisible disabilities are also protected by the ADA and are entitled to accommodations. Just because you cannot “see” a disability does not mean that it does not affect one’s daily life and day-to-day functioning.

Disability is unique because it is the only minority group that a person can join at any time in their life.

Q: How can others get involved in advocacy to support the implementation of the ADA and other disability rights efforts?

Others can get involved in advocacy as allies to people with disabilities.

I do motivational speaking to groups about disability awareness. But, when I am out and about, I still get the greatest to the worst reactions from people. Sometimes, people will even come up to me to pray to cure my disability. People need to know that people with disabilities are just like other people. It just may take us a little bit longer to accomplish our goals. Allies should also make sure they know about the ADA and what people need to do to comply with the law – and not take it for granted!

Want to get involved?

Learn more about the ADA here and what to do if you see accessibility needs not being met.

And sign up to advocate with people with disabilities nationwide at thearc.org/action!

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Meet The Arc’s Alumni Council

When The Arc’s Alumni Council was formed in 2017, it was envisioned as a gathering place for former employees and board members of The Arc’s national office, as well as local and state chapters. Nancy Webster is the founder and current chair of the council. She is also the former Board President of The Arc of The United States. As the Alumni Council founder, Nancy recognized that many former staff and volunteers were eager to remain engaged in The Arc’s network but were unsure how to contribute.

The Alumni Council provides a way to capture the rich experiences and knowledge of former employees and volunteers while keeping them connected to The Arc’s mission of supporting people with disabilities to be full members of their communities. Further, each alum offers unique skills, perspectives, and experiences that benefit the entire network, from chapters in small rural communities to those in bustling metropolitan areas.

In working with the council, Nancy said she had a goal of “reaching out to as many alumni as possible to invite them to engage with The Arc and other alums to support our mission, our chapters, and individuals.” This goal would be achieved by implementing several objectives:

  • Advising state and local chapters of The Arc on management considerations, including governance, finance, strategic planning, best practices, sustainability, and more
  • Serving as a think tank for risky questions, ideas, and concerns, as well as identifying the important battles and challenges on the horizon.
  • Providing guidance to individuals with disabilities and/or their families around crucial issues, such as housing and future planning

In addition to Nancy, The Arc’s Alumni Council is currently supported by Kerry Mauger, Director of Special Projects at The Arc, with input from its 54 members. Current members bring a variety of experiences to the council based on their roles as former staff, volunteer leaders, committee members, and self-advocates.

The council strives to offer a variety of activities, including:

  • Quarterly Zoom briefings which include policy updates
  • Opportunities for members to mentor executives of state and local chapters of The Arc
  • Eliciting member input on The Arc’s Strategic Plan and other documents
  • Assisting individuals with disabilities in leadership roles
  • Speaking engagements
  • And more!

Nancy noted that, in the future, they hope to gather in person for networking opportunities at The Arc’s National Convention and other events, as well as create new activities based on member feedback. To aspiring members of the Alumni Council she says, “Jump in! We are delighted to have you.”

Kerry adds to this sentiment saying, “There are so many great advocates within our chapters, and the Alumni Council offers a way for us to continue to keep them engaged in our efforts to support people with disabilities, both locally and nationally.”

Steve Morgan became a council member after working for nearly 45 years at The Arc Baltimore, 32 of which he served as executive director. Upon retirement, he says he was anxious to “stay connected to The Arc both personally and professionally…since I had been very active with The Arc and the National Conference of Executives.”

If you are a former board member or employee of The Arc at the national, state, or local level and are looking for ways to stay engaged, check out the Alumni Council. Membership is free, and you can participate as little or as much as your schedule allows.

Visit the Alumni Council webpage to learn more and sign up for the council here!

A close up of two sisters stand close to each other, looking at the camera and smiling.

Get to Know The Arc’s Sibling Council

Throughout the history of the disability rights movement, people with disabilities and their parents have been at the forefront in advocating for national and state services and programs. While siblings of people with intellectual and/or developmental disabilities (IDD) haven’t garnered as much attention, The Arc recognizes that siblings play a critical role in the lives of their sibling with IDD.

For siblings to be the best advocates they can be, it is important that they have access to information and resources that can help them make informed decisions, whatever their involvement. The Arc’s Sibling Council is one way for siblings of people with IDD to get access to resources and take part in The Arc’s grassroots advocacy efforts nationwide.

Members of the Sibling Council bring a wide range of expertise and passion, and they volunteer to serve a two-year term. Currently, the eight members are directing their advocacy efforts around two primaA close up of two sisters stand close to each other, looking at the camera and smiling.ry initiatives: competitive wages for direct support professionals (DSPs) and home and community-based services (HCBS). DSPs are a critical workforce that provides daily personal care and other independent living support services for many people with IDD. The National Sibling Council also hosts sessions at The Arc’s annual National Convention for siblings to connect and learn about ways to get involved in advocacy.

Liz Mahar, the Director of Family & Sibling Initiatives at The Arc, knows firsthand the importance of being an informed advocate. Liz has navigated her own challenges while supporting her sister, Crystal, from across the country. “As siblings, we can get lost in the day-to-day of supporting our loved one,” says Liz, “but it’s important to understand the ABCs of the service system in order to be an empowered advocate and more effective supporter.”

Hannah Roundtree, a member of The Arc’s Sibling Council, explains her family’s struggle in navigating the service system: “Growing up in rural Texas, my family faced a lot of challenges when it came to not only accessing supports and services for my brother, but even accessing the basic knowledge.” Hannah’s role on the council has allowed her to be a more effective advocate.

According to Acrystal Pugh from California, who joined the Sibling Council to improve the well-being and future of all siblings, siblings of people with IDD are the next best “line of defense.”

What can you do? Here are some ways for siblings of people with IDD to get involved and stay informed about The Arc’s advocacy movement:
• Register for The Arc’s sibling webinar on Tuesday, June 28 at 2:00 p.m. ET to learn about the resources and information available to all siblings.
• Connect with a state or local chapter of The Arc to join their advocacy efforts.
• Sign up for The Arc’s sibling newsletter and The Arc’s action alerts to become more engaged in disability advocacy.
• Contact Liz Mahar (mahar@thearc.org), the Director of Family & Sibling Initiatives at The Arc, to learn about future opportunities to join the Sibling Council.

Dominick a masculine appearing person with green eyes and brown spiked short hair gives a small smile. He is wearing gold wire-rim glasses and has some stubble and hair along his cheek line. This headshot shows from his mid-chest area upward. He is wearing a blue, black, and gray Argyle long-sleeve shirt. He sits in his wheelchair, and his black headrest wraps around the back of his head. The background is blurred, but you can tell there is grass behind him and he is outside.

Q&A: Father’s Day With Dominick Evans

Dominick Evans is a trans queer crip director/writer, consultant, Twitch streamer, and dad. They have a BFA in Film. Dominick’s work delves into inclusion in media, sex education for Disabled/LGBTQIA youth, marriage equality, institutional bias, and reproductive rights. In 2014, he founded #FilmDis, a Twitter chat about Disability in media.

Dominick has spoken around the world. He does video editing and works in Hollywood, consulting studios, to make the industry more inclusive. Dominick spends a lot of time streaming on Twitch – exploring accessibility and access. With their partner, Ashtyn, he releases an annual study into disability on television.

Recently, Dominick shared with us his experiences speaking with their autistic son about transitioning from female to male, celebrating his first Father’s Day, and what they want others to know about being a multiply disabled, trans dad.

Dominick a masculine appearing person with green eyes and brown spiked short hair gives a small smile. He is wearing gold wire-rim glasses and has some stubble and hair along his cheek line. This headshot shows from his mid-chest area upward. He is wearing a blue, black, and gray Argyle long-sleeve shirt. He sits in his wheelchair, and his black headrest wraps around the back of his head. The background is blurred, but you can tell there is grass behind him and he is outside.

[Image Description: Dominick, a masculine appearing person with green eyes and brown spiked short hair gives a small smile. He is wearing gold wire-rim glasses and has some stubble and hair along his cheek line. This headshot shows from his mid-chest area upward. He is wearing a blue, black, and gray Argyle long-sleeve shirt. He sits in his wheelchair, and his black headrest wraps around the back of his head. The background is blurred, but you can tell there is grass behind him and he is outside.]

What was it like to tell your son you were transitioning?

I started dating my girlfriend when her son was seven. By the time he was eight, his mom and I were in a serious relationship. We had moved in together, and it became clear that he wanted me to be more than just his mom’s partner. I always wanted children, so I was more than happy to commit to being his father. That’s the thing though. I knew that it was going to be a lifelong commitment and that I would have to change myself to be a better person – to be a better father for him. And that’s what I set out to do.

At the time I came out, I didn’t have the language to really talk about being non-binary. My son is autistic and really everything is very black-and-white to him. So, explaining my transition to him was going to have to be something I did very matter-of-factly, and that actually worked very well for our family.

My son was about eight when I came out to him. I just told him that I didn’t feel like a girl, and he said, “So you’re not my mom, you’re my dad?” And I said yes. Then he said awesome and asked me to go play Mario! That was pretty much it! Kids are very accepting of things because they have much more imagination than adults. I feel like as adults we kind of crushed our ideas of what the world could be, and instead, we focus on this very narrow view of how people should be. We are doing a huge disservice to not only our children but ourselves.

What has been your best Father’s Day so far?

On my first Father’s Day, after I came out, my son was very, very excited to buy me a present. When I opened it, it was matchbox cars! My dad, who had passed away a year or two before I got with my girlfriend, was a huge fan of cars and we had bonded over our love of classic cars when I was growing up. To share that with my son and pass that on was just so overwhelmingly beautiful. It was the most perfect, best first Father’s Day present, and I still have my car in the original packaging!

What do you want others to know about being a multiply disabled, trans dad?

The barriers my son and I face are not imposed by us. It’s the world that makes our lives difficult. We have a very happy, great family. When I started out, I had grown up in a very hostile environment. My family was all about yelling and I was mistreated a lot, particularly by my mother. I had to kind of work to really break those cycles of oppression. That was kind of on top of all the ableism we had to deal with, not only because I’m disabled but because my son is disabled.

Being a disabled dad with a disabled son, even if we don’t have the same disabilities, has been really helpful because I understand ableism in ways a lot of nondisabled parents don’t. Our life has been unconventional. Over the years I’ve done a lot of things that were more accessible to me. For example, I used to take him to do the shopping with me because he could help me put all the bags on my wheelchair and carry them home. Whereas my girlfriend would do things like helping with bathing and cooking his meals and physical things I couldn’t do.

We also homeschooled our son and I designed his curriculum. Being disabled and trans didn’t make the job difficult at all. I think at the end of the day it really enriched our life even more, and it also has made me more open to anything my son wants in life. All I want is for him to be happy, and if he is then I’ve succeeded as his dad!

Learn more about Dominick at DominickEvans.com.

Burt Hudson, wife Kim, and son Jack

Celebrate Father’s Day With Burt Hudson

By Rebecca Alson-Milkman – Rebecca is a dancer/choreographer, writer, and advocate. She is the mother of Celia and Elliot, who has Jacobsen Syndrome.

A man, Burt Hudson, at the beach with his wife and two young children

For father, brother, and advocate Burt Hudson, Father’s Day is a time for his favorite “self-imposed tradition.” He’ll be cooking for his family: his wife, Kim, and two boys, Jack, who has Down syndrome, and James. “Being a dad, I hit the lottery,” says Burt. “The best thing I can do is thank the people who let me do it…They call me ‘Dad,’ you know?”

Burt chatted with us recently about how becoming a dad has impacted his life, and he shared some advice for other parents.

When Burt Hudson and his wife Kim were told that their newborn boy Jack had Down syndrome, they “didn’t miss a beat. He was our first kid…a beautiful little guy.”

Burt and Kim had reasons to embrace what is sometimes an unsettling diagnosis for new parents: Burt had grown up with a younger brother, John, who had a developmental disability called WAGR syndrome and who Burt introduces as the “best man in my wedding; also my best friend; also my little brother.” As a child, Burt did not understand why his brother had the challenges that he had and remembers being mad at God and the world for giving his brother a more difficult path.

Burt Hudson holding and sleeping with newborn son Jack who has a nose cannula in his nose for oxygen.The night Jack was born, Burt reflected on his lifelong friendship with and advocacy for John and told his wife Kim that “she would never have married the person I had become if not for my brother.” Armed with the right information, Burt and Kim felt they could provide Jack the support he needed to flourish: “I don’t know why our son Jack has these challenges, but you give him a couple of years or decades and we’re going to see how he starts to change the world.”

First, however, they needed to get home from the hospital. Burt remembers Kim saying, “Down syndrome be damned. I just want my son to live.”

Soon after Jack was born, he turned purple in the face while trying to breastfeed. He was admitted to the special care nursery and then transferred to the NICU at MedStar Georgetown University Hospital where his medical team, headed by Dr. Mohammed Abubakar, found a host of other medical issues.

Jack came home at four weeks wearing a nose cannula with an oxygen tank in tow. He spent his first three months on oxygen. He was monitored at night by a pulse oximeter that went off frequently and sounded like a “World War II air siren” whenever Jack would kick it off in the middle of the night, making the family dog bark, Jack start crying, and both parents’ nerves sizzle. Eager as Burt was to “open up the world” to Jack, he was also acutely aware that they needed to address his current challenges before moving on. When Jack was able to breathe on his own, Burt and Kim’s ever-present fear was able to give way to research and preparation.

A young toddler, Jack, is sitting surrounded by toys. He has a big smile.

Anticipating the extra assistance Jack would need, Burt and Kim dramatically reorganized their lives. Kim left her job so she could keep track of the “crazy schedule” of Jack’s doctors’ appointments and therapies, as well as learn the languages that doctors, therapists, and eventually the school systems spoke.

Both Burt and Kim expanded their advocacy efforts. Burt had already been volunteering for The Arc: he was connected at first with The Arc of Atlanta by his mom, worked for The Arc of Virginia for 11 years, served on the Budget and Finance Committee for The Arc of the United States, and was recently appointed to the board.

Burt and Kim (pregnant with James), with Jack in tow, met at the capital with Senator Warner and other family advocates from The Arc of Virginia about the need for community-based services. Kim combined her health and communications knowledge with her new experiences with Jack to start a business assisting organizations that help build inclusive communities and support people with intellectual and developmental disabilities (IDD).

Kim is also the treasurer of the Down Syndrome Association of Northern Virginia. Together, they started a small foundation and a Coffee for Caregivers program, dedicated to Dr. Abubakar, to supply the Georgetown NICU with coffee for parents, caregivers, and staff alike.

A young boy, Jack, kisses his newborn baby brother.

Burt’s professional life was influenced by Jack’s birth. As COO of Leading Age, Burt serves members of the association who care for the needs of the elderly and some individuals with IDD. Having both a son and brother with developmental disabilities helps him to understand the needs of his members. “As a compassionate society, we have to take care of others: the elder population, people with special needs, people who do not have a lot of economic resources,” says Burt. “I’m sure there are a lot of people who live in their little bubble where they don’t see people who may have a more challenging path, but I’ve never known anything different.”

Apart from volunteering for a political or charitable organization, Burt also asserts that “a critical part of advocacy is just love, compassion, and acceptance” and leading through example. He remembers a time growing up when he and his brothers were in the ocean in Florida wrestling. They were just three brothers carousing, even though his younger brother John was going through chemotherapy and had hair loss and a port in his chest. “Nobody stopped the Hudson brothers from wrestling. No medical thing, no nothing. And my little brother was throwing the biggest punches. Some lady walked by and said to my mom, ‘Isn’t that sweet? They’re just brothers.'” The same can be said of how Jack (now 7) plays with his younger brother James (4). They have been a duo ever since James was born.

Burt Hudson, wife Kim, and son JackAs far as advice for other dads, Burt emphasized the need for information and resources to help Jack over his hurdles. Importantly, though, Burt champions that “every child is different. There is no playbook for anyone…Love your kid. Love your partner…If you love your child as much as you can today, tomorrow will get figured out.”

How to Get Information and Support

If you need help or information about IDD, please reach out to us. You can find your state and local chapters here or you can use our contact form here.

We also encourage you to get involved with our advocacy efforts to ensure that all families can access the resources that they need. Learn more at thearc.org/action.

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The Arc Rejects Hate, Honors Lives Lost and Wounded Survivors of Racially Motivated Shooting in Buffalo, New York

Washington, D.C. – The Arc released the following statement in reaction to the racially motivated mass shooting at a grocery store in Buffalo, New York.

“We are horrified by the racially motivated mass shooting in Buffalo, New York Saturday. We reject hate and no one should be in danger of being murdered because of the color of their skin. The motives and actions of the shooter, and the racist and antisemitic white supremacist conspiracy theories he, and those who sympathize with him, have espoused are sickening.

“Our country is experiencing an undeniable and very long crisis. White supremacy has been woven into the fabric of our existence for centuries, and despite incremental progress –we clearly have a long way to go. We must take down all systems of oppression that threaten and stand in the way of race equity and inclusion.

“The disability community includes individuals who are Black, Indigenous, and people of color (BIPOC) and we are in allyship with the Black community in Buffalo and everywhere. We refuse to stay silent when time after time, racist extremists in our country terrorize people of color, a deep-rooted sickness that should anger us all.

“We are all people. Everyone belongs. We honor the people who lost their lives and those wounded in Buffalo at the hands of this evil. We reject racism and hate, with the strong resolve to help tear down these walls of racism, white supremacy, and oppression,” said Peter Berns, CEO, The Arc.

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

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

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Intersection of Disability & Race Explored at Free, DEI Virtual Conference: Civil Rights Advocate Kimberlé W. Crenshaw & Disability Activists to Present

BROOKVILLE, N.Y. – As issues at the intersection of disability and race remain under-recognized due to a lack fluency or awareness, nonprofit agencies AHRC Nassau and The Arc of the United States are responding with a free, online conference on Wednesday, May 18, 2022 to connect attendees of all abilities and backgrounds with research, best practices, and most importantly, with each other.

The Diversity, Equity & Inclusion (DEI) Virtual Conference, “Beyond the Comfort Zone: Understanding and Eradicating Injustice, Racism and Inequality in the Field of Developmental Disabilities,” will explore the history, the latest research, and opportunities for the increased inclusion of people with intellectual and developmental disabilities (IDD) as well as recognition for direct care staff, who are primarily Black, Indigenous, and people of color (BIPOC).

“Disability is an underdeveloped area of DEI. For those with no prior connection to the experience of disability or the underlying issues related to race, there can be shame and hesitation in trying to discuss these issues—or worse, silence,” said Stanfort J. Perry, Conference Chair and CEO of AHRC Nassau. “The purpose of this online conference is to create a platform offering the latest insight on the intersectionality of issues pertaining to ableism and racism—to encourage questions, conversations, and above all, shine a spotlight on those whom society has marginalized.”

More than 30 years since the passage of the Americans with Disabilities Act, people with disabilities remain one of the most marginalized groups – at high risk of violent crimes to contracting and dying from COVID-19. Their essential support staff, who make tasks of daily living and participation in the wider community possible, are predominantly women of color who have spent years advocating for a living wage. According to a report from the University of Minnesota – Institute on Community Integration and The National Alliance for Direct Support Professionals, “Black/African American Direct Support Professionals (DSPs) were paid less per hour than white DSPs, and a higher percentage of Black/African American DSPs worked 40 or more additional hours per week.”

Though there is overwhelming need, an overall lack of funding has resulted in a 43% national turnover rate in the direct care workforce and a staffing crisis. Self-advocates, like Jessica Campbell, have advocated for years for necessary funding to ensure services and supports to lead an independent life. “Imagine not being able to get medication, access money, stay clean, cook, do your job, or go out into the community—that’s what a staffing crisis means to us,” said Campbell, who is currently a member of AHRC Nassau’s Board of Directors and a Field Assistant for the Long Island Region at the Self-Advocacy Association of New York State.

The upcoming DEI Virtual Conference is important to Campbell because in addition to addressing some of these issues during a conference panel, she hopes “more people have a chance to be understood and that more people can begin to understand the experience of disability.”

For Peter Berns, CEO of The Arc of the United States, “Disability providers, at the state and federal level, are working within legal, legislative, and service frameworks that can be complex and difficult to navigate regardless of whether you receive services, work in the industry, or seek to understand as an outside observer.

“Within these systems, people with disabilities and their direct care staff can become further and further removed from the action of daily life, and lead lives in parallel to their peers without disabilities—with few interactions, largely unseen and unheard,” said Berns. “The DEI Virtual Conference speaker lineup will offer valuable perspectives on how meaningful change must be the result of collective partnership and advocacy across all facets of society.”

Conference keynote and civil rights advocate Dr. Kimberlé W. Crenshaw will provide insight into the “intersectionality” framework—a concept she pioneered—addressing how overlapping identities, such as disability, gender identity, and race, can lead to complex, and sometimes under-recognized, issues of inequity and inequality.  Dr. Crenshaw currently serves as the Isidor and Seville Sulzbacher Professor of Law at Columbia Law School, as well as a Distinguished Professor of Law at the University of California, Los Angeles.

Examining the existing support systems and how to reach a more inclusive future is the focus of the plenary session lineup. Plenary Speaker Kerri E. Neifeld, Commissioner of the Office for People With Developmental Disabilities (OPWDD) in New York State, will present how her office is working to stabilize, professionalize, and strengthen the direct support workforce following the pandemic, while also advancing diversity, equity and inclusion in the developmental disabilities field.

Plenary Speaker Tawara Goode, Associate Professor and Director, Georgetown University National Center for Cultural Competence, will evaluate cultural and linguistic competence in the industry’s collective efforts to advance DEI, and more specifically, what it means to achieve outcomes in the IDD space, while Plenary Speaker Atif Choudhury, CEO of the UK-based company, Diversity & Ability, will share insights from his lived experience and career on topics ranging from how to evaluate an organization’s progress toward a fully inclusive culture to proactive acknowledgments of intersectionality.

“The quality of insight and dedication to advancing social justice outcomes at this conference is exceptional,” said Perry. “With more than 30 sessions, including speakers from a variety of professional disciplines and backgrounds, we are anticipating a day of learning and connection that advances a more inclusive and equitable future for all. That’s why the conference recordings and an event toolkit will be freely available for a year following the event. This event is intended to serve as a resource, informing and empowering more organizations and individuals.”

The DEI Virtual Conference “Beyond the Comfort Zone: Understanding and Eradicating Injustice, Racism and Inequality in the Field of Developmental Disabilities” will be held on Wednesday, May 18 from 8:30 a.m. – 6 p.m. ET at ahrc.org/deiconference. The event is free and open to all. Closed captioning will be available for all sessions; American Sign Language is available for plenary and select sessions.

FREE NASW Continuing Education Credits Available NASW-NYS is recognized by the New York State Education Department’s State Board for Mental Health Practitioners as an approved provider of continuing education for licensed social workers (Provider ID #0014), licensed mental health counselors (Provider ID #MHC-0053), and licensed marriage and family therapists (Provider ID #MFT-0037), and licensed psychologists (Provider ID #PSY-0088)

About Us
AHRC Nassau, a chapter of The Arc New York, is one of the largest agencies in New York State supporting people with intellectual and developmental disabilities (IDD). Based in Nassau County, the nonprofit empowers people to lead fulfilling lives, together with family, friends and community. AHRC’s programs include a wide array of supports for people with disabilities and their families, including vocational and employment services, adult day habilitation and community-based services, guardianship, family support services and respite/ recreation opportunities, as well as residential services. AHRC Nassau is part of an elite group of international agencies accredited by CQL | The Council on Quality and Leadership for Person-Centered Excellence Accreditation With Distinction. AHRC is also one of four agencies accredited by New York State’s Office for People With Developmental Disabilities as a Compass agency, which is the highest level of accreditation offered. For more information, visit www.ahrc.org.

The Arc of the United States advocates with and serves people wit­­h intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy, and other diagnoses. The Arc has a network of nearly 600 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes. For more information, visit thearc.org.

For more information, please contact Nicole Zerillo, assistant director of Community Resources, AHRC Nassau, at 516.626.1075, ext. 1134, or nzerillo@ahrc.org.

SOURCE AHRC Nassau

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