There is an exam table at a doctor's office in the forefront. In the background is a counter with papers, a sink, medical equipment, and posters hanging on the wall.

“He Isn’t Worth Helping” – Devastating Stories of Medical Ableism

Our health care system is failing people with intellectual and developmental disabilities (IDD) – and costing them their lives. Their shared experiences are eye-opening and egregious, including doctors outright refusing to provide services, wrongly attributing health issues to their disability, not viewing people with IDD as reliable communicators of their own health issues, making assumptions about quality of life and worthiness, refusing to allow a support person to accompany them, discounting their pain, and more.

People with IDD are being denied life-saving treatments or even routine preventative health care at disproportionately high rates. The research reinforces what we hear every day: people with IDD have poor experiences at hospitals and medical centers, which leads to poorer health outcomes and shorter life expectancies. Explicit bias and discrimination are directly limiting lifespans and causing unconscionable, avoidable suffering. Many of these discriminatory policies and practices were laid bare by the COVID-19 pandemic.

To combat these health inequities, the U.S. Department of Health and Human Services (HHS) is proposing updates to Section 504 of the Rehabilitation Act, landmark legislation prohibiting disability discrimination. Unrevised in 50 years, reforms would forbid medical discrimination against people with disabilities and improve accessibility. These urgent updates are important steps forward for protecting rights and ensuring equitable health care access.

The Arc has been a longtime advocate on this issue, and we jumped at the opportunity to submit comprehensive comments to HHS on these proposed updates. We shared research on the wide-ranging discrimination people with IDD face in health care settings and highlighted the need for reasonable modifications and plain language communications.

Most crucially, we included direct stories of discrimination collected from people with IDD and their loved ones nationwide. Here are a few of their stories.

  • A parent in Washington state has been told by doctors and health care providers that their child with Down syndrome “isn’t worth helping… isn’t worth saving.”
  • A child with autism in New York was denied care from a pediatrician for basic primary care services out of concern that his care needs would “overwhelm” the pediatrician’s practice.
  • When her son with Down syndrome experienced febrile seizures and stopped talking, his parent was told, “He has Down syndrome. What do you expect? They don’t talk.”
  • People with IDD are frequently denied clinically-appropriate treatment that would be offered to a person without IDD. For example, a parent in Connecticut was told by multiple doctors that her 10-year-old son’s chronic joint pain “is part of his disability” or “growing pains” before finally receiving a Lyme disease diagnosis three years later and being told the damage is permanent.
  • A parent in Maryland reported that it took 6 years to find a therapist for her daughter, who has Down syndrome. “[My daughter] is verbal but it is difficult for her to verbalize her feelings… I thought she had been sexually assaulted. I was finally able to get her [help], but it was temporary.”
  • Accessing mental health and dental services are particularly challenging for people with IDD. For example, Michigan parents of a young child with autism who was denied service by a dentist, were “dismissed with a warning not to come back until he no longer expressed the behaviors of an autistic child.”

The stories are innumerable, infuriating, and heartbreaking. But they power our advocacy. We will continue advocating for Section 504 reforms addressing the pervasive and longstanding discrimination that people with IDD experience from medical professionals. Everyone deserves equal access to health care.

By uplifting the voices of people with lived experiences, we’re holding health systems accountable and pushing them to see all patients as equally deserving of quality, individualized care. Join us in speaking out against medical ableism until equity is reality. Health care is a human right that must not be denied for any member of our community.

Seclusion and Restraint: A Mother and Teacher’s Perspective

A woman with long brown hair wearing a black turtleneck sweater and smiling.Cassie is a mother, former educator, and co-founder of Michigan Advocates to End Seclusion and Restraint (EndSaR). She is a passionate advocate against the use of seclusion and restraint in schools, fueled by a lifetime of personal and professional experiences with these practices, which she hopes others can learn from.

Cassie’s first experience with seclusion and restraint happened in 2001 when she was still a teaching student. She took a long-term substitute position working one-on-one with a fifth grader whom the school had determined to be too aggressive to engage in his classroom.

Cassie and her student had a good relationship with no incidents. But one day, Cassie arrived at school and found the student had been secluded in a room after “getting aggressive” at breakfast. He was screaming, punching, and kicking at the window. Staff told her this was typical behavior and that she needed to keep him there until he calmed down. “I had never heard of such a thing in all my educational training,” says Cassie, “but I was very good at following instructions, so I did what they told me.”

The student spent hours in that room—and not long after that, he stopped showing up for school. Over 20 years later, Cassie says this experience still lives with her. “I know what was happening felt wrong, but I had no idea at the time what to do differently.”

Nearly 20 years went by for Cassie without another incident involving seclusion or restraint. And when it happened again, she didn’t experience it as a teacher—it was as a parent. The person impacted was her five-year-old son, Kai.

When Kai was two years old, Cassie noticed her son was different. He was incredibly bright and taught himself to read before preschool—but he was also very intense and craved Cassie’s attention, acting out if she focused on something other than him. These challenges followed Kai into kindergarten. Eventually, he was diagnosed with autism. They discovered later that he also has extreme difficulty following short, specific directions.

The diagnosis gave Kai access to services and supports, and he received an individualized education plan (IEP). The teachers started with this plan and would ask Kai to sit quietly for five minutes, but he would get angry, and they would start the five minutes over again. This led to him being put in a seclusion room for the first time at just five years old.

A mother and son standing outside in a park. The son is wearing a boy scout uniform.Between August and December of his first-grade year, Cassie recorded that six-year-old Kai was sent for “time away” around 100 times, much of which took place in a seclusion room.

“It was a little, closet-sized room in an office… The one skinny window was covered with paper so [Kai] couldn’t see who was outside… Sometimes the door was fully closed, but many times, the school would have the door a little open but blocked so he couldn’t get out. When it was a little open, the school did not consider it seclusion.”

Eventually, a behavioral specialist was consulted, and they advised the use of restraints. This moment was a revelation and turning point for Cassie, both in terms of Kai’s education and her advocacy.

Cassie realized that the school system wasn’t going to work for Kai, because staff didn’t understand that he wasn’t in full control of his actions; he was struggling to manage his nervous system and sensory challenges. These experiences ultimately led Cassie to homeschool Kai. They also inspired her to start Michigan Advocates to End Seclusion and Restraint so that no other students and families must go through what her family did.

Parents and teachers often believe that seclusion and restraint are needed to keep everyone safe. However, Cassie believes that it makes everyone less safe:

“Right now, teachers set expectations for students and expect students to meet them. If they don’t, the system perceives the student as a problem. There is often a lack of awareness of the adult role in co-regulation as a tool for preventing unwanted behaviors. This environment causes parents to feel like they are part of the problem when they offer alternative ways to care for their kids, and this mindset is also part of what fuels the ‘pre-school to prison’ pipeline, where students are pushed out of the classroom and become much more likely to be introduced to the criminal justice system.

If we could work with students, their families, and mental health providers to identify the underlying causes of behaviors and resolve those issues, we could prevent most of these crises and issues from occurring. When this happens, everyone is safer.

To do this, we need to support our teachers in the classroom with training on data-driven best practices, developments in neuroscience and learning, and resources, including more personnel and help in the classroom. We need to get away from grading teachers on their classrooms’ behavior management and rewarding and punishing teachers based on the behaviors that students in their classroom display.”

How to Help Students With Disabilities

Teachers and schools need money to support students with disabilities. The Individuals with Disabilities Education Act (IDEA) was passed into law in 1975 to provide education services to kids with disabilities. Currently, Congress funds schools at less than 15 percent of their needed costs. We must fully fund special education—and general education—costs so that teachers and schools have the right resources to support the next generation of Americans.

We also need Congress to pass the bipartisan Keeping All Students Safe Act to establish safety standards and provide better training and oversight to ensure the safety of students and staff and prevent abuse and death. Sign our petition to support this important bill.

A long school hallway lined with red lockers and classroom doors on either side.

Amanda and Other Michigan Advocates Fight to End Seclusion and Restraint in Schools

A long school hallway with red lockers and classroom doors lining either sideWhen her seven-year-old son was in first grade, Michigan mom Amanda got an unexpected call from the new school principal. Her son, who has autism, had kicked the principal—and Amanda was being asked to keep her son home from school the next day.

A strong advocate for her son, Amanda agreed but asked the school to confirm that her son’s 504 plan was being followed. She also asked for an evaluation for an individualized education plan, since there seemed to be something going on.

But after the incident, things escalated.

“My seven-year-old was put into a classroom by himself. The staff exited the room, closed the door, and held the door handle so he could not leave. They said this was because he would throw items at them or threaten to break items if they stayed in the room. I remember my child saying to me, ‘Mommy, I was so scared. Why did they lock me in there?’ Even though the door wasn’t locked, he couldn’t get out of there and didn’t know what was going to happen.”

These seclusions continued to happen anytime there was a behavior. Despite regular therapy and practicing calming strategies daily before school, nothing worked. Within minutes of getting to school, Amanda would get a call saying her son was out of control and that she needed to go get him.

“Eventually, the therapist told us that our son had PTSD symptoms. That when he would walk into school, he was stuck in a fight or flight response, just waiting for something bad to happen.”

By second grade, the school told Amanda they could no longer support her son, so she moved him to a new school. On the first day at the new school, Amanda got another devastating call—this time from her son, who had been allowed to call his mom during a break from seclusion. When Amanda picked up the phone, she heard her eight-year-old say, “You have to come get me…. pick me up, pick me up. I couldn’t breathe, I couldn’t breathe.”

Frantic, Amanda called the school and was told that her son had been restrained using an approved hold before he was put in a seclusion room. She was told that if her son could talk, he could breathe too. “Years later, after George Floyd was smothered in the streets,” she says, “I realized that the idea that if people can talk, that they can breathe is wrong and that something very bad could have happened to my child.”

While Amanda’s son has not been restrained or secluded in a very long time, the trauma from those past experiences continues to impact him, even now in junior high. And the impact extends to Amanda’s whole family. “We don’t know how [this trauma] will affect us throughout our lives, and I don’t want any child or any family to have to experience what we went through. For me, part of healing is to take this experience and somehow do something with it to make it make sense.”

Part of this healing journey led Amanda to join Michigan Advocates to End Seclusion and Restraint.

Despite her son’s and family’s experience with their area public schools, Amanda wants others to know she doesn’t blame teachers for what happened.

“I am a huge believer in public schools and teachers, and I don’t blame our public educators for doing what they are trained to do. They have no other tools at their disposal and don’t have the funding to do something else… Legislation like the Keeping All Students Safe Act has money attached to it so we can give teachers other tools in their toolbox and the resources needed to use them… I also want parents to know they need to look out for signs of trauma if their child is secluded and restrained. If something strikes you as wrong in your gut, trust it, even if others are telling you it is okay. You know your kid the best.”

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Change Your World: Kick-Start Your Disability Advocacy With The Arc

For nearly 75 years, The Arc has been on the frontlines of the disability advocacy movement, fighting for the issues that matter most to people with disabilities and their families. The Arc is a grassroots organization with nearly 600 state and local chapters, all pushing for the full inclusion of people with disabilities on the federal, state, and local levels.

Every day, people with disabilities and allies across the country—just like you—are advocating to build a more inclusive world. And with everything that is on the line right now, we need every person who cares about disability rights and equality to step up and join our fight for inclusion for future generations. We need YOU!

So, what are you waiting for? You can join us RIGHT NOW and become a fierce disability activist! Here’s how:

  1. Find out who your members of Congress are: The Arc provides an easy way to see who your Senators and Representatives are. Head on over to our Action Center and enter your zip code in the Find Your Elected Official box on the righthand side. Once you know who your members of Congress are, visit their website and review their priority issue areas. Using this knowledge, you can tell them how important it is to include disability issues in legislative discussions.
  2. Connect with your state and local chapters of The Arc: Discover who your state and/or local chapters of The Arc are and where they are located. Visit their website to learn how you can get involved.
  3. Follow your members of Congress on social media: When Congress is in session, you can follow along with your members’ current legislative actions on places like Twitter—even if you don’t have an account! When they work on an issue that matters to you and/or aligns with The Arc’s Action Alerts, this is the moment when your outreach will make the greatest impact. Get in touch with them directly or through The Arc’s Action Center to share why they should support a position that benefits the disability community.
  4. Visit The Arc’s Action Center: The Arc’s Action Center (thearc.org/action) houses all The Arc’s current action alerts. Clicking on the alert you are interested in will lead you to a page with more information where you can send a note to your members of Congress showing your support. You can use our prefilled template or write your own. Once you have filled in your contact information and completed your submission, click the button at the bottom to submit your note.

Now that you are equipped with The Arc’s four key advocacy steps, get out there and start advocating for the disability community! Remember, take pictures of your advocacy when possible and share them on social media. Don’t forget to tag The Arc of the United States in your posts.

We can’t wait to see you out there!

 

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For Tyson, Marriage Changed Everything – Including His SSI

By Tyson from North Carolina

Married people with disabilities often experience penalties that force the couple to give up necessary benefits. Congress must address marriage penalties so everyone has the chance to marry without endangering the key supports they need to live in the community. Tyson is one of the many people with disabilities who have experienced this penalty, and he shares his experience below.


I have been getting Supplemental Security Income (SSI) since I was 19 years old. I’m now 46. These benefits are important to me; they help me pay for things I need, like rent and food. I have always been vigilant to report my earnings and document everything Social Security asked of me.

In 2021, I got married to the love of my life. My wife works for our local school system and is a wonderful partner. I didn’t know, though, that getting married would so greatly impact my SSI.

In late 2021, I got a call from Social Security. It was time to do the regular review, where Social Security asks the same questions over and over to make sure I am sharing all the information and earnings I have. During the call, I shared that I got married, gave them the date and information, and shared my wife’s income information.

Because I got married, I was told that my SSI would be cut from about $800 a month to $500. This was because of my wife’s income. But SSI is my only source of income, and it felt like I was punished for getting married. At the same time, I also found out my rent would increase by $200 a month. So, my wife and I had to do more with even less.

The Social Security office also told me I could get a Social Security Disability Insurance (SSDI) benefit through my dad’s work record. I spent hours tracking down school records to make sure Social Security had what they needed. Several times, people who worked at Social Security told me I would get SSDI. But, in the end, they rejected my application. I felt like I was lied to and that my time was wasted.

I do my best to pay my bills and live the best life I can. But I am trapped in poverty.

I can’t help that I have a disability, and I want to do more to contribute to our household and have planned to get a part-time job. I am worried that doing this will make me lose my SSI and other benefits. My wife and I have thought about moving to another state to be near other family members, but that may cause me to lose my other benefits, too.

I don’t know what to do, but I know that people should not have to live like this or be punished for marrying the person they love.

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

You Have the Power: Go Vote!

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

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

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

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

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

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

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

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

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

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Guiding The Arc Through Lived Experience With Disability

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

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

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

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

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

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

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

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

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

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

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All About Congressional August Recess

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

For U.S. senators and representatives, recess is a time of the year when legislators leave their duties in Washington, 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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Want to get involved?

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

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

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Meet The Arc’s Alumni Council

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

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

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

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

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

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

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

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

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

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

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

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