A young boy of color smiles, seated at a table with a birthday cake in front of him.

Meet Yusuf, A 10-Year-Old With Autism and Big Dreams!

/in /by Pam Katz

A young boy of color smiles, seated at a table with a birthday cake in front of him.

My name is Yusuf and I’m 10 years old. I am in 5th grade. I like to play hockey, write blogs, and make videos for fun. I am hoping to create a YouTube channel soon. I like school so far and one of my favorite subjects is math.

Something I am proud of is playing hockey and doing stuff above grade level. I can also play soccer really well—I really like sports. I want people to know that I’m actually very smart. I’m learning eighth-grade things.

But when I was young, there was this one kid that kept making fun of how I speak, and I was only in second grade. I thought if I could just be nice, everything will work out, and I didn’t know how to defend myself. Eventually, he stopped bullying me and I learned how to be nice, but to be yourself and don’t let people take advantage of you.

One of the things I like to do is play with my friends during recess. We play freeze tag, tag, and kickball—and ultimate frisbee. My best friends are Whitman and James. I like to play games with them, and we make up missions to solve a puzzle.

One of the best things that happened to me was when I got my iPad Pro. On my iPad I make music and videos, and draw!

When I grow up, one of the things I want to do is play hockey and be on a team.

When I am older, I will also get my own house and after that, try to take care of the bills. I think I will know how to take care of the house and my money and use it responsibly and have a good life. I have never been on a plane, and I would like to go to Nigeria someday and see my family.

I would help change the world by being nice. People are always mean and if I taught people how to be nice and why, and all the advantages of being nice and the skills I have…people would be kinder.

Want to read more stories like this? Visit thearcwebdev.wpengine.com/stories. 

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Alice and Soojung’s Story

/in , /by Pam Katz

“We’ve spent most of her life waiting for the help we need, for the wellbeing of our family.”

Soojung teaches middle school math and has three wonderful children. Her middle child, Alice, has Rett Syndrome, and has severe seizures, scoliosis, and uses a G-tube for nutrition, fluids, and medications. Alice has had many major and minor surgeries throughout her childhood, and every time Soojung and her husband requested at-home nursing care for her recoveries, it was denied by private insurers.

Alice’s pediatrician sat Soojung down and said, “You can’t go on like this.” The round-the-clock care and the toll of the stress was overwhelming them.

With the pediatrician’s help, Alice was finally accepted for services through the Medicaid program when she was 11 years old. Night nursing services led to a great improvement in Alice’s health, keeping her out of the hospital for the first year in her life. Soojung went back to the classroom, where she loves teaching math. And today, with the addition of day nursing services, Alice is 15 years old and able to participate in school, at home during 2020, and in-person in 2021 while Soojung teaches her students.

The Arc is fighting to make sure no family has to wait years for services that improve a child’s health and ability to thrive in the community.

“My daughter has the right to receive an equal chance of living her life, and Medicaid provides that extra help she needs to survive, learn, and thrive. The Arc’s work is so critical to ensure that Alice has a fulfilling life.”

A mom and her son sit in a car, smiling for a selfie. The son is young, and both are Black. The mom is wearing large round white earrings, red lipstick, a green dress, and the son is wearing a white t shirt.

Everyone’s Uniqueness Should Shine

/in /by Pam Katz

“I would love to see the day where everybody can stand on the mountain top and say ‘this is who I am and I am proud of it.’” – Shannon Mattox, State Director of The Arc Georgia

Limbric Mattox is brilliantly unique.A mom and her son sit in a car, smiling for a selfie. The son is young, and both are Black. The mom is wearing large round white earrings, red lipstick, a green dress, and the son is wearing a white t shirt.

That’s how his mother proudly describes him.

“He’s unique in his own ways,” said Shannon Mattox, State Director of The Arc Georgia. “He’s very smart. He has his gifts and he has his talents.”

Mattox started her position at The Arc Georgia in July 2021, leading Georgians in advocating for people with intellectual and developmental disabilities.

Limbric is 11 years old and going into the 6th grade. He loves geography and was the runner-up in his 5th-grade class spelling bee.

“My disabilities will be even better when coronavirus is over. Other than that, I like it,” said Limbric, who is proud of his disabilities.

He has invisible disabilities and sensory obstacles.

“He’s a normal kid, doing normal things. He likes toys. He likes to watch TV. He loves electronics,” says Shannon, adding that Limbric is quite tech-savvy. “To him, he has a normal life.”

But as a Black family living with disability, they have faced many challenges. Discrimination is a constant factor in their lives, particularly in education.

“All the time,” she says. “I’ve been talked to and treated in IEP meetings over the years like I’m dumb and poor just because I am Black. I am my child’s first advocate.”

Shannon recalls countless examples of how she and Limbric experienced discrimination based on their race and Limbric’s disabilities.

“My very first experience was my son being observed in class without my knowledge. I should’ve been notified right away,” says Shannon. “Those aren’t games that should be played with our child.”

In meetings with school administrators and teachers over the years, Shannon has experienced many challenges.

“When you decide to speak up or have boundaries, then you’re the problem. You’re the angry Black woman,” she says. “The thing that keeps me whole is my faith and the fact that my son has come so far.”

Shannon earned her Master of Business Administration degree in 2015. She completed the Partners in Policymaking program in 2018. Shannon began volunteering and serving on the boards of organizations committed to supporting people with disabilities and families. These experiences and her greatest role as Limbric’s mother empower her with tools to navigate special education and advocate for her son and other people with disabilities.

The Arc fights for the rights of students with disabilities, and is part of a class action lawsuit against the State of Georgia for discriminating against thousands of public school students with disabilities by providing them with a separate and unequal education in the Georgia Network for Educational and Therapeutic Supports (GNETS) program.

Students in GNETS are not only segregated from their non-disabled peers but also receive an inferior education. Many students in the program are not taught by certified teachers and instead are primarily taught through computers. They cannot access the basic credits they need to earn a diploma, resulting in an abysmally low high school graduation rate. Limbric is not in the GNETS program, but the fact that the system exists for kids just like her son horrifies Shannon.

“Children should be able to go to their neighborhood school and there should be a program to accommodate every child. There should be resources to accommodate every child. Every school should be a beautiful environment that every child can walk into,” says Shannon.

As The Arc Georgia State Director, part of Shannon’s mission is to team up with families to fight for the rights of people with IDD, tear down discrimination, and help eliminate the stigma attached to disability, particularly among Black families.

“Thank you for taking the time to highlight my family’s story. I hope it helps,” said Limbric.

“I would love to see the day where everybody can stand on the mountain top and say ‘this is who I am and I am proud of it,’” said Shannon.

So that everyone’s uniqueness can shine. Shannon says despite the challenges, Limbric’s future is brighter than ever.

“He has to be able to take care of himself one day. I want him to go to college if that is what he wants to do. I want him to love his life and be a happy whole man – no different than any other parent,” said Shannon. “We still have dreams. We still have goals. We still have things that we desire as a family.”

Sign up for The Arc Georgia Newsletter and Disability Docket to stay up to date on the GNETS case and other cases.

 

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

/in , , , /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!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 thearcwebdev.wpengine.com/action!

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Home Manager Jackie McRoy: We Are in a Much Better Place Thanks to the COVID-19 Vaccine

/in /by Pam Katz

Jackie McRoy is a home manager for The Arc of Central Alabama. She supports individuals with intellectual and developmental disabilities (IDD) who live in a group home. Jackie is a direct support professional, who cares for her clients like family.

“The people I support mean everything to me,” said Jackie, who has supported people with disabilities for 8 years.

When the COVID-19 pandemic started, Jackie and her team had to scramble to keep people safe. They did the best they could up against many challenges like a global shortage of personal protective equipment (PPE) and a highly contagious and dangerous virus. As the pandemic surged, Jackie’s clients were the most at risk.

COVID-19 disproportionately sickens and kills people with disabilities. Despite exhaustive efforts to keep the virus out, it found its way into group homes and congregate care settings all over the country.

“Scary times … those days of the pandemic were scary times,” Jackie shared with The Arc.

Then, the virus hit closer to home than ever for Jackie. Her mother died from COVID. She was not vaccinated.

Jackie decided to get the COVID-19 vaccine and booster. She believes the vaccine saves lives – and could have saved her mother. Jackie has encouraged other support workers to get the vaccine.

She also joined The Arc’s health program in participating in a project focusing on COVID-19 vaccine outreach and public education. The program received a subgrant from the Association of University Centers on Disabilities (AUCD), as part of a grant AUCD received from the Centers for Disease Control and Prevention (CDC).

The Arc worked with The Arc of Central Alabama, The Arc of Arizona, The Arc of Indiana, and The Arc of the Mid-Ohio Valley in West Virginia to collaborate on the development of local radio public service announcements (PSAs) airing in certain markets in those states.

“The safe and effective COVID-nineteen vaccine changed things. It has allowed us to reopen and go about our lives, with more security about our health and the safety of those we love, including the people with disabilities I help every day,” said Jackie.

Jackie believes we are in a much better place, thanks to the vaccine. Listen to her PSA here.

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Lynsay Frye: Let’s Not Look Back Now. Get the COVID-19 Vaccine

/in /by Pam Katz

Lynsay Frye is a leader across many communities in West Virginia. She holds leadership positions with various groups and councils such as the Disability Council and the Independent Living Council. But it’s her leadership in simply setting the example that is just as impactful.

“When the pandemic started, I couldn’t stay with my parents because my mom worked in healthcare and it wasn’t safe for us to stay together,” Lynsay explained.

Lynsay stayed with her grandmother for a couple of months.

Then, Lynsay made an important decision to keep herself, her family, and the community safe. She got the COVID-19 vaccine.

“The reason why I thought it was important was because I have a disability and with my disability, my immune system is really low, so I could get sick. I got the COVID-19 vaccine to save my life,” said Lynsay, 33.

Lynsay joined The Arc’s health program in participating in a project focusing on COVID-19 vaccine outreach and public education. The program received a subgrant from the Association of University Centers on Disabilities (AUCD), as part of a grant AUCD received from the Centers for Disease Control and Prevention (CDC).

The Arc worked with The Arc of the Mid-Ohio Valley in West Virginia, The Arc of Arizona, The Arc of Central Alabama, and The Arc of Indiana, and to collaborate on the development of local radio public service announcements (PSAs) airing in certain markets in those states.

“People like me, with a disability, are at a greater risk of death from COVID-19,” Lynsay said. “But the vaccine made things better. We could go about our lives without so much fear. I felt more secure about my own health and safety, and the health and safety of everyone around me.”

Lynsay still takes proper safety precautions like wearing a mask. She encourages others to wear masks and to wear them properly.

“Let’s not look back now. Give the vaccine a chance,” she said.

Now, Lynsay is back to many of her routine activities and the job she loves at her church.

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In Solidarity With the Community of Uvalde, Texas

/in , , /by Pam Katz

The Arc released the following statement in the aftermath of the mass shooting at Robb Elementary School in Uvalde, Texas.

“We are so saddened by the events that occurred yesterday at Robb Elementary School in Uvalde, Texas.  The families, and the community of Uvalde, will forever be impacted by the loss of these young children and their teachers.

“These tragedies are creating an environment where people no longer feel safe in their schools, places of worship, grocery stores – the communities where they live, work, and play.  And we are deeply concerned that Congress’ failure to act to prevent this violence is undermining basic human rights.

“The senseless violence has to stop. Our elected leaders must put aside differences to comprehensively address the growing problem of gun violence that affects all of us, including people with disabilities and their families.”

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

/in , , , /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.

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

/in , , , , , /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 thearcwebdev.wpengine.com.

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!

/in , , , /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.