Archive for category: Grassroots

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

July 19, 2022/in Advocacy, From the Frontlines, Grassroots, Public Policy/by Pam Katz

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!

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!

Meet The Arc’s Alumni Council

July 19, 2022/in Advocacy, Grassroots/by The Arc

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

June 14, 2022/in Advocacy, Grassroots/by The Arc

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 primary 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.

Q&A: Father’s Day With Dominick Evans

June 14, 2022/in Advocacy, Grassroots/by The Arc

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.

[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.

Celebrate Father’s Day With Burt Hudson

June 13, 2022/in Advocacy, Grassroots/by The Arc

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

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.

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.

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.

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.

As 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.

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

May 17, 2022/in From the Frontlines, Grassroots, News, Press Releases/by The Arc

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.

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

May 16, 2022/in Advocacy, From Our Chapters, From the Frontlines, Grassroots, News, Press Releases/by The Arc

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.

A teenage girl with Down syndrome standing in a yard in front of a white fence with an older family member. The woman is laughing, with her hands on her granddaughter's shoulders. They are both looking at the camera.

Thank You, Moms!

May 6, 2022/in Advocacy, From the Frontlines, Grassroots, Public Policy/by Pam Katz

Mother’s Day is a time to celebrate mothers and the mother figures who strengthen and support us in our lives. We want to recognize and honor the fierce mom advocates who have shared their stories and struggles, and the strength to fight for families nationwide.

This past year, moms nationwide raised their voices for a historic investment in Medicaid home and community-based services (HCBS) so that everyone can get the support they need to live in their community.

Andrea from Virginia, Julie from Texas, and their families shared their struggles as they wait for nearly a decade for HCBS that can help their children get the critical care they need at home. While family time comes with much joy and love, Julie knows that “[she’s] not going to live long enough to be her [child’s] direct caregiver forever.”

In October 2021, Pennsylvania disabled mom and activist, Latoya, came to Washington, D.C., to a storytelling vigil at the U.S. Capitol to share why HCBS matters to her and her family.

I came here today because I am literally fighting for my life and freedom…. Home and community-based services and accessible housing keep me from being stuck in an institution to get my needs met-something nobody of any age wants. I want Congress to understand that their political games are putting my life and my freedom at risk, and to stop the posturing and realize what your inaction is doing to real people.

Virginia mom and sibling, Laurie, shared her and her sister Amy’s story of transitioning from an institution to receiving HCBS in a group home and how this change helped her sister grow, even though it was a scary change for their family.

California mom, Amparo, was concerned that her son Jesus and other Latino families might struggle to access disability supports and services like HCBS. From this concern, Amparo joined forces with mothers in her state to launch a local chapter of The Arc, Madres Unidas Para Una Mendota Con Igualdad of The Arc. This chapter is dedicated to fearlessly confronting disparities and racism and ensuring all people can access disability services.

On March 30th, New York mom, Laura, spoke about her family’s need for HCBS at a rally at the U.S. Capitol and entreated Congress to act urgently and boldly to support people with disabilities and their families.

The rippling effects of our crumbling care system impact everyone. We have a crisis in this country as the salaries of direct support professionals do not match the important work they do…. We need a well-trained and stable workforce for continuity and quality of care! Building bridges to caregiving leads to the building of bridges in all our lives.

And this past week, moms Dena, Faye, Nancy, and Soojung shared on our Facebook page why HCBS are essential to their families and why services must be preserved and expanded.

Moms nationwide have also fought for other significant changes to protect and support their families and others.

In Iowa, moms Charmain, Heather, Erin, and Nancy all advocated to challenge laws that would ban schools from requiring masks. Because their children experience disabilities and underlying health conditions that would make them particularly susceptible to severe illness or death from COVID-19, they argued that this ban would effectively exclude their children from public schools and deny them equal access to education.

Mom and advocate, Micki, shared her family’s experience with Social Security’s complex rules around benefits – and how earning around $300 too much 14-15 years ago nearly disqualified her son from receiving future benefits that would help him live independently in the community.

And last but certainly not least, Debbi and Kerri both detailed the impact that not being able to access paid leave had on their family. Debbi often worked through the night to meet her deadlines and keep hold of their health insurance that kept her child alive. Kerri and her family were forced to rely on a GoFundMe campaign to pay for their mortgage, utilities, and essentials so they would not lose their home.

THANK YOU to these moms and to all our moms and mother figures in our lives who strengthen us, support us, and work tirelessly to make lives better – not just for their families, but for everyone.

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

May 5, 2022/in Advocacy, Featured Posts, Grassroots, News, Programs and Supports, Public Policy/by The Arc

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

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

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

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

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

Proposed Changes to Affordable Care Act and Executive Order Would Open Up Coverage to Millions of Families

April 7, 2022/in Grassroots, News, Press Releases, Public Policy/by The Arc

WASHINGTON, D.C. – The Arc is pleased that President Biden signed an executive order this week to strengthen the Affordable Care Act (ACA), a lifeline for people with disabilities. The changes could make health insurance more affordable to millions of Americans with disabilities and low-income Americans.

President Biden, joined by former President Obama, announced that the Administration is proposing a rule change to the ACA to close what is known as the “family glitch.” The “family glitch” leaves some families stuck with unaffordable coverage because it excludes many families from using the premium tax credit to purchase affordable health insurance on the ACA marketplaces. These families, including those who have disabilities or have family members with disabilities, face totally unaffordable premiums.

“For people with intellectual and developmental disabilities (IDD), access to health care can be a matter of life or death. It is uniquely difficult for people with IDD to obtain affordable and adequate health insurance coverage despite depending on health care services more than those without disabilities,” said Marty Ford, Senior Advisor at The Arc, who was invited to and attended the White House announcement.

The ACA is critical to the lives of people with disabilities, their families, and the direct support workforce who rely on the ACA for access to health coverage for preventative care, to maintain good health, and secure vital medical treatment. The importance of the ACA is underscored by the pandemic. The public health crisis is a glaring reminder of the inequities in health care and discrimination faced by people with disabilities, other groups that are marginalized, and people holding multiple marginalized identities.

We also support other elements of President Bident’s new executive order directing federal agencies to continue to find ways to make coverage under the ACA, Medicaid, and Medicare easier to enroll in and strengthen the benefits available.

The Arc and our allies have fought relentlessly to defend the ACA to preserve this lifeline for people with disabilities. In 2020, The Arc, with a coalition of disability and civil rights organizations, joined an amicus brief filed in the U.S. Supreme Court urging the court to uphold the ACA in its entirety. The Arc also provided an amicus brief in support of upholding the law before the Fifth Circuit Court of Appeals in 2019.

The Arc promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes.

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