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.

 

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All About Congressional August Recess

/in , /by The Arc

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, DC 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

/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!

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

Federal Court Strikes Down Texas’ Election Law Provisions Restricting Assistance for Limited English-Speaking and Disabled Voters

/in /by The Arc

Washington, DC – A federal court has struck down provisions of Texas’ election law, S.B. 1, that illegally restrict necessary assistance to limited English-speaking voters and voters with disabilities. Last week, Texas officials declined to appeal this ruling. This means that these provisions of S.B. 1 are now permanently enjoined and cannot be enforced.

The order from Judge Robert Pitman prohibits Texas from limiting voting assistance to only reading and marking the ballot and from requiring individuals assisting voters to sign an oath requiring them to confine their assistance to reading the ballot to the voter, directing the voter to read the ballot, marking the voter’s ballot, or directing the voter to mark the ballot. The court further ordered Texas to revise its training and instructional materials for state and county officials, and to distribute notice to all county elections departments clarifying the S.B. 1 provisions that they should not enforce. The provisions at issue directly violated a 2018 injunction holding that such limitations on assistance violated the Voting Rights Act.

In September 2021, The Arc, Legal Defense Fund (LDF), and Reed Smith filed a separate federal lawsuit on behalf of the Houston Area Urban League, Houston Justice, Delta Sigma Theta Sorority, Incorporated, and The Arc of Texas challenging S.B. 1, which includes a series of suppressive voting-related provisions that will make it much harder for Texas residents to vote and disenfranchise some altogether — particularly Black and Latino voters and voters with disabilities. The lawsuit alleges that several provisions of S.B. 1, including the provision recently struck down, violate the U.S. Constitution, the Voting Rights Act, the Americans with Disabilities Act, and Section 504 of the Rehabilitation Act. Among other violations, Plaintiffs claim that the law imposes barriers that discriminate against voters with disabilities and deny people with disabilities full and equal opportunities to participate in the state’s election process. This complaint remains pending before Judge Xavier Rodriguez.

“This is a significant victory for voters with disabilities in Texas,” said Shira Wakschlag, Senior Director, Legal Advocacy and General Counsel for The Arc. “Texas voters with disabilities who need assistance to vote will now be able to receive that assistance without illegal restrictions placed on their fundamental right to access democracy. At the same time, many discriminatory aspects of S.B. 1 currently remain in place and we will continue fighting to ensure equal access to the polls for voters with disabilities.”

“Judge Pitman’s order is an important victory for people with disabilities in Texas,” said Georgina Yeomans, Assistant Counsel at LDF. “But there is still work to be done to completely eradicate the discriminatory effects of S.B. 1. That these provisions directly conflicted with a federal injunction at the time they were drafted and passed only highlights the Legislature’s disregard for the law when it enacted S.B. 1.”

“While this order is an important early victory in our challenge to S.B. 1, many egregious and anti-democratic restrictions still remain in violation of the law by intentionally targeting and burdening methods and means of voting used by voters of color, limited English-speaking voters, and those with disabilities,” said Reed Smith partner Ken Broughton, who will argue the plaintiffs’ case in a trial set for next summer. “As we’ve said before, a true democracy seeks to increase voter turnout, not inhibit it, and these restrictions remain fundamentally anti-voter.”

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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Meet The Arc’s Alumni Council

/in , /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!

Nurse holding the hand of a patient

Disability Advocates Urge for Investment in Launch of 988 Hotline: A Mental Health Crisis Deserves a Mental Health Response

/in , /by The Arc

The Arc of the United States through its National Center on Criminal Justice and Disability, and the Autism Society of America, two of the nation’s largest and oldest grassroots organizations representing people with intellectual and developmental disabilities (IDD), mark the national rollout of the 988 National Suicide Prevention Lifeline, a Suicide and Crisis Lifeline, by calling for true transformation in crisis response across the nation.

On July 16, 2022, the U.S. will transition to using the three-digit 988-dialing code, nationwide. The expanded hotline will provide 24-hour access to people across the country experiencing a mental health crisis or behaviors that are part of their disability.

According to the National Center for the Dually Diagnosed, 30% -40% of people with IDD are likely to have co-occurring mental health disabilities (almost 70% for people with Autism). In addition, the Centers for Disease Control says adults with disabilities are almost four times more likely to report suicidal ideation compared to persons without disabilities (31% versus 8% in the general U.S. population).

Too often, people with disabilities in crisis have nowhere to turn and call 911, many times resulting in bad outcomes. In some instances, family or friends call 911, only escalating the situation. Research shows people with mental health conditions are 16 times more likely to be killed by law enforcement, people with disabilities make up 33% of people killed by law enforcement, and these risks increase for Black people and other people of color (Policing and Racial Injustice: A Disability Rights Perspective Impacts and Solutions, Disability Rights Ohio).

Disability-related behaviors can be misunderstood by law enforcement officers who are trained to gain control and compliance on a scene but typically not trained to identify a disability or know how to interact or communicate with persons with disabilities. Behaviors such as rocking back and forth, walking or running away when being approached or questioned, and having trouble communicating can be misunderstood and wrongly believed to be indicative of violent behavior or behavior associated with drugs.

“A mental health crisis deserves an emergency response that addresses behavioral health, as well as intellectual and developmental disability for people with co-occurring diagnoses. We applaud the launch of 988, but we believe more investment in the system is needed to ensure people with IDD who have mental health challenges, in every state, have access to the hotline and to make sure 988 effectively serves communities,” said Peter Berns, Chief Executive Officer of The Arc of the U.S.

“Suicidal ideations and attempts disproportionately affect the Autism community at a rate at least three times greater than the neurotypical rate. The Autism Society put together a Suicide Prevention Task Force, which is working to provide more actionable guidance for crisis centers, like the 988 Suicide Prevention Lifeline, to better support the Autism community,” said Chris Banks, President and CEO of the Autism Society of America.

We urge the federal government to:

  • Invest in the creation of community-based infrastructure that can effectively respond to individuals in crisis, and avoid inappropriate institutionalization, hospitalizations, or incarceration.
  • Require a national training curriculum for 988 call-center staff to understand how to respond to callers with intellectual and developmental disabilities, such as Autism, Down Syndrome and Fetal Alcohol Spectrum Disorder (FASD). For example, The Arc’s National Center on Criminal Justice and Disability offers the Pathways to Justice training program. The program offers not only training, but also supports a community-based response through Disability Response Teams that address the topic of people with IDD and criminal justice issues. 988 call center staff can be part of Disability Response Teams, joining a community-side effort to support people with IDD in their own communities.
  • Expand the definition of “first responders,” generally thought of as police, paramedics and firefighters, to include civilian mental health crisis responders.
  • Develop nationwide mobile crisis teams equipped with trauma-informed mental health professionals, peer supports, and community de-escalators.
  • Invest in training mental health professionals, first responders, and related personnel in meeting the needs of people with IDD.

As 988 is rolled out in states and communities across the country, we must work to ensure community-based supports are in place for all callers, including those with mental health disabilities and IDD.

On September 13, The Arc is hosting a free, virtual teach in and workshop, titled “Disabled BIPOC: Disrupting Danger in Crisis Response”. Learn more and register.