A man in a blue suit with a red tie stands in front of a doorway at the White House. In the background is a blue oval plaque on the wall with white text that reads "The White House" and behind him is an American Flag.

Disability Justice Advocate Neli Latson Joins White House Black History Month Event

/in , /by The Arc

Washington, DC – Neli Latson’s story of unjust prosecution and abuse in the criminal legal system was heard at the White House today, bringing attention to the need for better treatment of people with disabilities in interactions with law enforcement.

Latson was invited to speak with high level government officials during a Black History Month event with other young advocates on a variety of social justice issues.A man in a blue suit with a red tie stands in front of a doorway at the White House. In the background is a blue oval plaque on the wall with white text that reads "The White House" and behind him is an American Flag.

“Being at the White House today was not only an honor, it was a dream come true. For years, when I was locked up in solitary confinement, I daydreamed about getting out and telling my story. I wanted to stand up and speak out so that other autistic people, and other Black people, and other Black and autistic people, would not experience the terrible things that happened to me,” said Latson.

In 2010, Latson was an 18-year-old high school student, waiting outside his neighborhood library in Stafford County, Virginia for it to open. Someone called the police reporting a “suspicious” Black male, possibly with a gun. Latson, who has autism and intellectual disability, had committed no crime and was not armed. The resulting confrontation with a deputy who came to investigate resulted in injury to the officer when Latson, whose autism is accompanied by tactile sensitivity, resisted being manhandled and physically restrained. This was the beginning of years of horrific abuse in the criminal legal system. Prosecutors refused to consider Latson’s disabilities, calling it a diagnosis of convenience and using “the R-word,” and rejected an offer of disability services as an alternative to incarceration. Instead, Latson was convicted, sentenced to prison and punished with long periods of solitary confinement, Taser shocks, and the use of a full-body restraint chair for hours on end for behaviors related to his disabilities.

The Arc of Virginia and national disability advocates, including The Arc’s National Center on Criminal Justice and Disability and the Autistic Self Advocacy Network, urged then-Virginia Governor Terry McAuliffe to pardon Latson.  In 2015, he was granted a conditional pardon. Although this released Latson from prison, it required him to live in a restrictive residential setting and remain subject to criminal legal system supervision for ten years. The terms meant Latson could be sent back to jail at any time, causing constant anxiety.

Finally, in 2021, then-Virginia Governor Ralph Northam granted Latson a full pardon, giving him his freedom. Since this development, Latson now lives in his own apartment and receives community-based supports.

“It’s gratifying to have the White House acknowledge the importance of Neli’s advocacy for a society that treats all people with disabilities, particularly Black people, with dignity and respect. The painful truth is that Black people with disabilities live at a dangerous intersection of racial injustice and disability discrimination, and Neli’s life was forever altered by his experience,” said Tonya Milling, Executive Director of The Arc of Virginia, who attended the event with Latson.

“This case galvanized disability rights activists, bringing national attention to overly aggressive and sometimes deadly policing, prosecution and sentencing practices and to the horrifying mistreatment of people with intellectual and developmental disabilities in jails and prisons. Neli’s advocacy is a testament to his strength and desire to make sure no one is treated like he was in that moment that forever changed his life,” said Leigh Ann Davis, Senior Director, The Arc’s National Center on Criminal Justice and Disability.

“I still have a lot of trauma to overcome. I am fearful and it’s hard for me to do a lot of things. At the same time, I am happy that the activism and publicity about my case not only helped me, but also helped to make change for others,” concluded Latson.

The Arc logo

The Arc Announces New Leaders and Members of National Board of Directors

/in /by The Arc

Washington, DC -The Arc has elected a slate of new and returning members of the Board of Directors to lead its work for the next two years. This distinguished group includes professionals in the intellectual and developmental disability (IDD) field and affiliated services, people with IDD, family members, and leaders in the corporate and legal sectors, all of whom are dedicated to promoting and protecting the human rights of people with IDD and supporting their full inclusion and participation in the community throughout their lifetimes.

This Board of Directors takes the helm as we continue to chart a course for our future with the Strategic Framework for the Future of The Arc that focuses on growing our power and diversifying our movement. We are committed to supporting our chapter network as it continues the work on the ground supporting people with IDD and their families, while facing a massive workforce crisis that threatens all of the progress we have made to realize the rights of people with IDD and their families and support them in the community.

“The Arc has been right alongside families and people with disabilities for more than seven decades – and we have a lot of work to do to continue to be the leading grassroots organization for people with IDD. This board of directors has all the skills necessary to seize on the opportunities, and meet the challenges, ahead. I look forward to leading this incredible group as we support the future of The Arc,” said Laura J. Kennedy, President, The Arc’s National Board of Directors.

The Arc’s Board Development Committee completed a rigorous process of preparing the slate of officers and directors for election. The Committee identified and selected a group of candidates that, collectively, has the knowledge, skills and expertise to meet The Arc’s leadership needs. The slate was then presented at the 2022 annual business meeting.

National Board Members of The Arc

Officers

President: Laura J. Kennedy, Staten Island, NY. Since 2018, Kennedy has been a member of The Arc’s Board of Directors where she has served as Treasurer and chair of the Policy and Positions Committee. Laura is a parent of woman with a developmental disability and has been a strong advocate on the local, state, and national level. After 28 years, she retired as Director of the Staten Island Early Childhood Direction Center, a NYS Education Department technical assistance center for families and professionals. Kennedy has been an active board member of both the local New York City chapter of The Arc, and The Arc New York, having served as president of both. While President of The Arc New York, Kennedy formed a workgroup that is currently preserving the organization’s significant collection of disability history. She has been an active member of the Willowbrook Legacy Committee, a collaborative between the College of Staten Island, its Archivist, and the disability community in preserving and recognizing the Willowbrook Consent Judgement and the social justice struggle connected to it. She has also served for over 35 years on the board of the Staten Island Developmental Disabilities Council.

Vice President: Debbi Harris, Eagan, MN. Harris is a Systems Specialist with Family Voices of Minnesota, and is committed to helping shape all civic, community, and health systems to seamlessly include people with disabilities and chronic medical conditions and their families. Harris has personal experience navigating those systems for over 25 years on behalf of her son Josh, who has intellectual and developmental disabilities and complex medical needs. Harris has served on The Arc’s Committee on Diversity and is currently a member of the national Work Advisory Group for Paid Leave for All.

Secretary: Mitch Routon, Colorado Springs, CO. Routon works as an employee of The Arc Thrift store in Colorado Springs, CO.  Routon is a member of The Arc Pikes Peak Region where he served as Treasurer and Vice President. Routon is currently serving as President of The Arc of Colorado’s Board of Directors. He has served on The Arc’s national Board of Directors since 2018.  He is a strong self-advocate in the Colorado Springs area and larger Colorado community.

Treasurer: Burt Hudson, Arlington, VA. Hudson is the Chief Operating Officer of LeadingAge, an association of non-profit aging service and long-term care providers. He is responsible for the association’s human resources, business development, finance, and information technology departments. Hudson is both a father and brother of individuals with disabilities. He currently serves as Treasurer of the board of directors of The Arc of Virginia, an organization he has served since May of 2011.

Immediate Past President: Kenneth Oakes, Philadelphia, PA. Oakes has been involved with The Arc since 1976.  While in college he worked at a summer school program for students with intellectual and developmental disabilities (IDD). The school was founded by the Erie County, PA chapter of The Arc.  This experience set him on a 47-year career in special education and working with and for children and adults with IDD, and a lifetime of volunteer service with The Arc.  He has served as President of The Arc of Philadelphia and The Arc of Pennsylvania and continues as an active member of both boards. Elected to The Arc US Board of Directors in 2016, he has served as Board President, chair of the Policy & Positions Committee, and member of the Executive, Strategic Planning and Diversity Committees.  Currently, he serves as Chair of the Board Development Committee and Co-Chair of the Policy & Positions Committee.  Oakes lives in Philadelphia with his husband Ed.

President, The Arc of the United States Foundation Board: Carol Wheeler, Washington, DC. Wheeler serves as the President of the Board of Directors for The Arc of the United States Foundation. Prior to this role, Wheeler was on The Arc’s national Board and Executive Committee and during the Obama Administration, was appointed to the President’s Committee for People with Intellectual Disabilities. Wheeler’s other volunteer work has included founding and chairing the board of the Washington Ireland Program for Service and Leadership, co-chairing the Advisory Board for N Street Village, founding and chairing the Friends of J.O. Wilson Elementary School, coordinating the DC program for Project Children, chairing the board of the South Africa-Washington Program, and co-chairing the Washington Interfaith Network.

In addition to working on Capitol Hill and in a Cabinet agency, she has served as White House Liaison for Women’s Organizations, Executive Director of the Women’s Campaign Fund, Vice President of Government Affairs at the National Association of Broadcasters, and as a consultant/lobbyist for America’s Public Television Stations.

New Board Members

Frank Adu, North Brunswick, NJ. Adu is the Chief Executive Officer of The Arc Middlesex County. He started with the company over 27 years ago as a direct support professional and advanced into different leadership roles within the organization. Adu is a Certified Nonprofit Accounting Professional and a leadership coach under John Maxwell. He enthusiastically embraces learning and training and strives to grow leaders.

Frank possesses an MBA and is a member of the Steering Committee of the National Conference of Executives of The Arc. He is also a member of the New Jersey Conference of The Arc Executives and former board treasurer of the New Jersey Association of People Supporting EmploymentFirst.

Kim Dodson, Indianapolis, IN. Dodson has over 30 years of experience in the field of public policy and government affairs. In 2015, she was appointed to serve as Chief Executive Officer of The Arc of Indiana. She first joined The Arc of Indiana in 1998 as Director of Government Relations and was moved into the role of Associate Executive Director in 2006. In 2013, Dodson was named CEO of Arc Innovations, Inc. and The Arc Building Corporation. These related entities work with The Arc, focusing on employment opportunities for people with disabilities. Together they have established the Erskine Green Training Institute and Courtyard Muncie at Horizon Convention Center – a landmark project that provides training to people with disabilities to work in the hospitality, food service, and health care fields.

Pablo Juárez, Nashville, TN. Juárez was born and raised in Austin, Texas where some of his earliest jobs were serving people with disabilities. After graduating from the University of North Texas and completing a few summer internships serving in a traumatic brain injury rehabilitation program, Juárez moved to Nashville to join a multidisciplinary brain injury rehabilitation team. He then attended Vanderbilt University for a master’s degree in special education and is currently the Co-director of TRIAD, the autism institute at Vanderbilt Kennedy Center. Juárez has focused on expanding services for children with autism significantly throughout Tennessee. Juárez has previously served as a board member for Tennessee Disability Rights, Tennessee Equality Project, and Tennessee Association for Behavior Analysis and served on multiple workgroups through local, state, and national disability-focused organizations.  He also currently serves as one of the board of directors for the Association for University Centers on Disabilities.

Jamelia Morgan, Chicago, IL. Professor Morgan is an award-winning and acclaimed scholar and teacher focusing on issues at the intersections of race, gender, disability, and criminal law and punishment. Her work examines the development of disability as a legal category in American law, disability, and policing, overcriminalization, the regulation of physical and social disorder, and the constitutional dimensions of the criminalization of status.

Professor Morgan received a BA in Political Science and a MA in Sociology from Stanford University, and her JD from Yale Law School. She served as Associate Director of the African American Policy Forum, a social justice think tank that works to bridge the gap between scholarly research and public discourse related to affirmative action, structural racism, and gender inequality.

Yvette Pegues, Canton, GA. Pegues is academically trained as a Doctor of Education Leadership & Early Childhood Specialists, Doctor of Business Philosophy, and  Microsoft Certified System Engineer. She authored several IBM patents, white papers, and Redbooks in her Engineering and World Wide Program Delivery Manager roles as well as non-fiction books as educator and Diversity Practitioner. She is also a globally recognized and acclaimed DEIB (diversity, equity, inclusion, and belonging) authority. As a disabled executive, she is uniquely qualified and trained to uncover equity gaps and disability barriers that organizations and people leaders cannot see.

Dick Rhoad, Carmel, IN. Rhoad is an accomplished executive with proven success in diverse industries. His leadership experience includes staff development, finance, and operations, with an exceptional record in strategic direction and business development. Rhoad has led large organizations, as well as small businesses. He has qualified credentials in commercial business, the public sector, and nonprofit organizations. For over 25 years, Rhoad has supported organizations serving individuals with intellectual and developmental disabilities. He has been both a continual volunteer and a leader in assisting these organizations to grow and expand their services. Rhoad is currently a member of The Arc of Indiana Board of Directors and serves on multiple committees.

Christopher J. Rodriguez, Phoenix, AZ. Rodriguez has an extensive history advocating alongside and on behalf of individuals with disabilities at the local, state, and national levels. Before becoming the President and CEO of Ability360, Rodriguez served as the Executive Director of Disability Rights Louisiana, Director of Public Policy for National Disability Institute, Director of Governmental Affairs and Media Relations for the Michigan Protection and Advocacy, and Director of Chapter Services at The Arc of Texas.

Rodriguez received his undergraduate degree at the University of California, Berkeley. He earned his graduate degree in Public Affairs at the Lyndon Baines Johnson School of Public Affairs at the University of Texas, Austin. Rodriguez’s passion for advocating comes from his experiences as the younger sibling to a person with significant intellectual and developmental disabilities.

Sumeet Seam, Cabin John, MD. As the chief legal officer at the National Geographic Society, Sumeet Seam leads the organization’s legal and business affairs function and is involved in shaping the Society’s business model and growth strategy. Mr. Seam joined the Society with 20 years of experience successfully developing high-performing legal and risk departments. He served as general counsel for Save the Children, overseeing all legal affairs and key operations functions. He also spent 12 years at Discovery Communications, where he managed the U.S. corporate legal department. As a public speaker, Mr. Seam has addressed board governance; crisis management; enterprise risk management; diversity, equity, and inclusion; and workplace culture.

Kristen Soler, Raleigh, NC. Soler is a successful corporate executive with over 20 years of experience working in consumer products, retail, and auto. Soler started with Advance Auto Parts in 2017 as the Vice President of Human Resources, Supply Chain & Corporate and has since been promoted to the Senior Vice President, Human Resources. As a member of Advance’s transformation team, Soler has focused on recruiting top talent to key leadership positions and frontline retention. She has delivered improved results in inclusion and diversity, the team member experience, and building a stronger employer brand. Soler launched the company’s hiring strategy for people with disabilities across the enterprise, under which they have currently hired 550 team members with disabilities.  Soler is active with other nonprofits including the Triangle American Heart Association, the American Heart Association, and the Tim Tebow Foundation.

Returning Board Members

Meghan Burke, Champaign, IL. Burke is a professor in the Department of Special Education and Education Policy, Organization and Leadership at the University of Illinois at Urbana-Champaign. Her research examines parent advocacy, sibling caregiving, and families of individuals with disabilities. Burke has a 29-year-old brother with Down syndrome and has an eight-year-old son with a disability.

Jasmine E. Harris, Washington, DC. Harris is a law and inequality legal scholar with expertise in disability law, antidiscrimination law, and evidence. She is a professor of law at the University of Pennsylvania Carey Law School. Her work seeks to address the relationship between law and equality with a focus on law’s capacity to advance social norms of inclusion in the context of disability. She consults with federal and state lawmakers and legal advocates on issues of legislative and policy reforms related to disability laws.

Stacy Kray, Pal Alto, CA. Kray is an attorney with more than 20 years of transactional and litigation experience at leading global law firms. She has been involved in class action and other legal proceedings to enforce the civil rights of those with disabilities under federal and state law, including the federal Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA). As a pro bono coordinator, she co-founded a community impact project to educate teens about their legal rights and responsibilities relating to social media use and sexual misconduct that includes modules on hate crimes, legal consent, and bullying (areas of critical importance for the disability community).

Russell Lehmann, Los Angeles, CA. Lehmann is an award-winning and internationally recognized public speaker, thought leader, and poet with a platform on autism and mental health. After Lehmann’s diagnosis at age 12, he became increasingly isolated from the outside world due to the pain and hurt of not being understood. His journey took many twists and turns, and he found solace in writing poetry, participating in athletics, and becoming an advocate. A graduate of MIT’s “Leadership in the Digital Age” course, Lehmann’s name and story are known worldwide, and his workshops, keynote speeches, and performances reach thousands of students, teachers, legislators, policy makers, business leaders, and service providers each year. He was recently recognized by the Autism Society of America as the “2022 Advocate of the Year”.

Meredith Sadoulet, Philadelphia, PA. Meredith Sadoulet is an entrepreneur, former corporate executive, and board director. With an extensive background in human resources, finance, and strategy, she brings diverse leadership across media & technology, financial services, healthcare, energy, and defense industries spanning multiple iconic Fortune 100 companies. Meredith is the Founder and CEO of ProFound, an early stage startup that is building a powerful professional network among leaders with disabilities and accessibility advocates. She has both a personal connection to and professional experience with disability inclusion and advocacy. Meredith is the recipient of a variety of workforce and future of work related awards, including the Society for Human Resource Management (SHRM) & Society for Industrial & Organizational Psychology (SIOP) HR Impact Award and the National Diversity Council Top Talent Officer Award.

Chris Stewart, Birmingham, AL. Stewart became the President/Chief Executive Officer at The Arc of Central Alabama in 2013, after serving as the organization’s Chief Financial Officer since 1999. He is responsible for the oversight of more than 650 employees across 89 locations who manage early intervention, adult day activity, community experience, employment, and residential programs for people with intellectual and developmental disabilities. Stewart has made a tremendous impact on the organization’s fundraising and strategic business operations. Among Stewart’s many accolades, he was named by the Birmingham Business Journal as the 2020 CEO of The Year, and received the 2022 NCE Executive Excellence Award.

Chloe Rothschild, Sylvania, OH. Rothschild is an adult with autism who is on a mission to advocate and teach others about autism from her perspective. Rothschild is one of the co-authors of the My Interoception Workbook for Teens, Adolescents, and Adults. She has served on The Arc’s national Board of Directors since 2018. She also serves on the Ohio Center for Autism and Low Incidence (OCALI) advisory board. Rothschild has been advocating for autism from her perspective for over 10 years. She works as a teacher’s aide at an autism school three days a week.

Faye Tate, Denver, CO. Tate is the Vice President of Diversity & Inclusion at CoBank and the former Director for Global Equality Diversity and Inclusion at CH2M. Tate is well-known in the field of diversity and inclusion, having a proven track record in successfully developing and implementing strategic diversity and inclusion plans for multiple organizations. She is focused on positioning diversity and inclusion as strategic business imperatives. She has a family member with intellectual disability.

Jose Velasco, Austin, TX. Velasco is a Program Director in the Product Engineering Board area at SAP and Autism at Work Ambassador. Velasco’s 30-year information technology career spans the private and public sectors and companies ranging from startups to Fortune 50 enterprises. During his tenure of 24 years at SAP, Velasco has occupied positions in product management, consulting, development, strategy, go-to-market, and diversity functions. In 2016, Velasco launched the Autism at Work Summit, a conference series designed to foster collaboration with the ultimate purpose of improving opportunities for individuals with autism in the labor market. He has two family members with autism.

A selfie of a father and his teenage son, sitting in a car and smiling. The father is wearing sunglasses.

School Should Be a Safe Place for Students, but Isaac Was Assaulted

/in , /by Pam Katz

A selfie of a father and his teenage son, sitting in a car and smiling. The father is wearing sunglasses.Isaac has autism and mental health disabilities. Isaac sometimes gets very focused on certain things and struggles to adjust or focus on other things. To help him in school, a 504 plan was created so that teachers and other staff at the school would know how to support and redirect him safely.

When Isaac was 15 years old, that plan failed when he was put in a chokehold at his school by the school resource officer. Now 22, Isaac and his dad, John, shared with us about the incident and how it impacted Isaac’s school life.

Tell us about the choking incident. What happened?

ISAAC: I was in band class. Our school called students to the gym for a sex education class. The teachers told us you didn’t have to go if you didn’t want to, or if you signed a paper saying you weren’t going to go. I told them I didn’t want to go, but they still forced me to go. Since I didn’t want to be in the room, I went to the other side of the gym to nap until the class was over.

One of the teachers didn’t like that I was napping and ignoring the class, and they asked me which teacher I had for the period. I didn’t answer because I felt like the teacher was trying to get me in trouble, even though I had not done anything wrong. When I refused to respond, they called in two administrators. The administrators told me to give them my backpack and search through it. I refused to give it to them, as they did not have the right to take my things for no reason. They then tried to take my backpack from me forcefully. Finally, the school resource officer got involved. He took my bag from me.

I was still trying to get my bag back from them. I was not fighting back but resisting the situation. The officer forced me to the ground. He stood side-by-side with me, placed his left leg in front of both of my legs, and lifted his leg backward. This swept my legs from underneath me and caused me to land on my stomach. Then, since I was still resisting and trying to get back up, he got on top of me and started to choke me. I stopped resisting after about 10 seconds because I did not want to black out. After that, he let me go and began searching my backpack because he claimed that the administrators thought I had drugs or a bomb in my bag. I obviously did not have anything like that in there.

What happened after the incident?

ISAAC: The afternoon after the incident, the school told my mom that they had wanted to search my backpack, and I resisted this. They did not share that I was put in a chokehold. My mom told the school that I had a 504 plan that describes how to support me if I resist what the staff asks me to do; however, the administrators explained that they had so many kids with 504 plans that they could not have possibly known which students do or don’t have plans—or be expected to follow them in the heat of the moment.

Later that week, the school resource officer told me he was sorry for the run-in, but did not acknowledge that he or the school may have been in the wrong. He did at least try to get to know me better and have a civil relationship from that point on.

No one from the school ever told my mom or dad that I was in a chokehold or taken down by the school resource officer.

I didn’t tell them either. I was new to the school. I am also not a tall guy and, at the time, was 106 pounds. I was a new, short, small kid that no one knew. I didn’t want to be a target for bullying. People at my new school were already wary of me before the incident because of how I reacted to things and because I always wore a hood because I was always cold. After the incident, a rumor started that the officer had tackled me.

Afterward, people feared me. People began to worry and ask whether I would shoot up the school. I was okay with people being scared of me because I was just happy that people were not trying to bother me or bully me. And I had friends who knew me. However, I was portrayed as the bad guy by classmates and at school.

John, how did you and your wife discover the incident?

JOHN: I was at the high school several months later to speak to a class at the teacher’s invitation. When I was introduced, it was mentioned that I was Isaac’s father. A student at the side of the room said, “I know that dude. He’s crazy!” After that, I asked Isaac if something happened.

As a parent, I was extremely disturbed. Nobody likes to hear that their child is bullied or being targeted. I had a few experiences with bullying as a child, and no one wants that.

I’m also a professional disability advocate. At the time, I had also just watched the reports around Ethan Saylor, who was tackled and suffocated to death. There were also some reports of teachers being tough and not accommodating to students with disabilities because they don’t understand how to help them.

When my wife and I discovered Isaac was put in a chokehold, it was months later. At the time, there was not much more we could do but try to fix the rules that caused the incident. But that’s not enough—changing the rules does not change people’s attitudes.

When people think of autism, they see Rain Man or The Good Doctor. With Isaac, you would not know he had autism unless you knew him very well. He does not present how people typically think of someone with autism. As a result, he sometimes gets pushed around more than other kids.

The incident should never have happened. For the administrators to talk it down or brush it off without informing us is the most disturbing thing. He was assaulted—and no one bothered to tell us about it.

What do you want other people to know about the use of restraint and seclusion?

JOHN: I want them to know the same thing my father taught me: there’s never a reason to resort to violence. I have never yet seen, even in the worst situations, a need to escalate to violence because people are not responding clearly and immediately to demands. There are ways to get the desired result, but sometimes, you have to dig a little deeper. There are always other options.

What happened could have been averted if they had gotten to know my son. How many people use seclusion and restraint instead of getting to know the kids they support? Educators need a better sense of what is happening and how to help the kids they educate. In our home state of North Carolina, educators only need eight hours of training to work in a classroom for kids with disabilities. How can you expertly support kids with only eight hours of training? Certainly, more could be done to prepare teachers.

ISAAC: I want other kids with disabilities to know the same thing my father taught me: there’s never a reason to resort to violence. And that they should wait until your parents get there to speak with the school. Quite literally, your parents are your lawyer. Teachers won’t always listen to you. It would be best to have your folks with you to argue for you and advocate on your behalf. To parents, you may be angry about an incident, but you still need to be civil and work with the school because otherwise, the school won’t help your child; they may suspend or expel them instead. You must do your best to be civil and willing to work together to keep your student at school.

JOHN: I’m proud of my son for what he just said. Previously, I spent time as a trustee on a school board. People would ask over and over what school is the best for kids with disabilities. The critical difference in outcomes for kids with or without disabilities is parents being involved. They know who we are and that we are not just angry parents but also active and involved in the school. It changes the educators’ attitudes, and they see our child more as a person. They become more willing to engage with parents and intervene before things blow up.

Parents should also know what their and their kids’ rights are and be able to call people out when needed. Isaac is my fifth child. I know our rights and how to advocate with him because I made mistakes and learned with my previous children. Sometimes, administrators will say things that do not respect the rights of kids and parents. They may push boundaries that they should not do so and rely on parents not to know their rights. It can be intimidating. Parents must know their and their kids’ rights and advocate.

A graduate stands in front of a tree on a sandy spot with boulders around him. He is wearing a cap and gown, holding a diploma, and smiling.

A Genetics Journey To Support What’s Possible in Life

/in /by Pam Katz

Ellen Feldman has a passion for increasing research in the intellectual and developmental disabilities (IDD) field and continuing her ongoing advocacy in that arena. She currently serves as the Central Region Vice President for The Arc New York, and as a member of the Board of Governors and Executive Committee.

So, what inspires Ellen to devote her time and energy to this field? The answer is simple – her son.A middle-aged man stands in a kitchen with white cabinets. He is wearing a red shirt, and apron, and is using a cooking utensil on a sheet pan of food.

Ellen’s son, Matthew, is 40 years old; he receives supports and services through ACHIEVE, a chapter of The Arc, and has lived in a group home since he was 21. When Matthew was 14 months old, he was diagnosed with IDD and several associated symptoms – all with an unknown cause.

“We went to see the head of pediatric neurology at Columbia Presbyterian Hospital many years ago, and they couldn’t tell us what caused Matthew’s IDD,” Ellen said. “They couldn’t give us a real diagnosis. They basically told us that he’s going to be significantly delayed – he’ll never go to college and he’ll never drive a car. This news was crushing, of course. So we stumbled our way around, got him into early intervention programs, and did whatever we could.

“We’ve been down the path of lots of different hospitals and development centers, always looking – not for cures – but for ways to help him live his best life,” she said.

Ellen reached out to The Arc New York network for recommendations of an objective third party that might help her gain more answers. Ellen connected with a geneticist at Columbia Presbyterian Hospital, and was sent an at-home genetic testing kit. Her family did a series of saliva swabs and returned the package to be analyzed.

On Labor Day Weekend, she received a call that her son has a rare genetic disorder called SynGAP1.

There is currently no cure or specific treatment for the underlying condition that causes

SynGAP1. However, learning more about the symptoms related to the genetic disorder can help individuals find relief and better understand how to manage them. For instance, Matthew has been having staring seizures for a while, and when he comes out of these seizures, he has aggressive episodes.

“There was an incident where Matthew was staring at another individual, staff asked him to stop staring, and he wouldn’t stop,” Ellen said. “This continued until he all of a sudden got aggressive and angry. We now know that when you come out of a seizure, there’s a period of delirium where you’re confused and don’t know what just happened – this confusion triggers an aggressive response. Recognizing these symptoms and being calm instead of admonishing Matthew can help prevent these situations from happening.”

Genetic testing can also lead to the discovery of secondary conditions connected to SynGAP1. Ellen learned her son is at a higher risk of colorectal cancer, and as a result, he’s going for his colonoscopy and endoscopy at the age of 40 instead of 45, the recommended age for those not at risk.

GENETIC TESTING

Ellen understands that some might be apprehensive about genetic testing, especially when it can cost upwards of $3,000. However, she wants to share an opportunity for individuals to potentially get free and convenient genetic testing at home.

She discovered Probably Genetic, a company offering free genetic testing paid for by sponsors. The company’s website provides people with a questionnaire to determine if they are eligible for free testing. A physician reviews the answers, and if the person is considered to be a good candidate, they are sent a test that only requires a saliva sample. The test is returned with prepaid shipping and analyzed in the lab. In about eight weeks, a geneticist calls to review their clinical genetic report.

The SynGAP Research Fund also notes these genetic testing options:

  • Ambit provides free access to genetic counseling and testing to all patients who qualify. Testing is available in all 50 states and is open to all ages. Qualifications include: children age seven and under with at least one seizure; or anyone over seven with at least one seizure, one developmental delay and on at least one seizure medication.
  • Invitae’s Behind the Seizure free genetic testing program is offered to any child in the US or Canada under the age of eight years old who has had an unprovoked seizure. Australian residents can visit this website.

SYNGAP1 mutations are suspected to be the underlying cause of approximately 1-2% of all Intellectual Disability (ID) cases, making it one of the most common genetic causes of ID, similar to more well-known syndromes like Fragile X, Angelman and Rett Syndrome.

SynGAP1 mutations are significantly underdiagnosed. The disorder was only discovered in 2009, and testing didn’t begin until 2015, so any genetic testing completed before 2015 would not have shown SynGAP1.

Additionally, many families receive a diagnosis like autism, intellectual disability, or epilepsy and stop their diagnostic search, thinking they have reached a conclusion.

“I stopped looking for a diagnosis and a cause years ago and just focused on what I could be doing for my son,” Ellen said. “The more information we can load into research databases the more data there is for researchers to use. We’ve got to continue looking ahead to the future and always be thinking of what more we can be doing.”

 

 

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Get Ready for Medicaid Renewals in 2023

/in , , /by Pam Katz

As COVID-19 rapidly spread across the U.S. in March 2020, Congress declared a public health emergency and passed legislation that gave states more money for Medicaid if they met certain requirements. One of the main requirements was that people would be able to keep their Medicaid health care during the COVID-19 public health emergency.

As a result of recent legislation, the continuous enrollment requirement will end in early 2023 and states will soon be restarting Medicaid eligibility reviews. For many with disabilities, this means that they may lose critical Medicaid services and supports. Based on estimates, up to 15 million people could lose their current Medicaid coverage.

States may start the renewal process as early as February 1, 2023. Fortunately, there are steps you can take to be ready:

  1. Verify that your contact information is updated. Make sure your state Medicaid agency has your current mailing address, phone number, email, or other contact information so they can easily contact you about your Medicaid coverage.
  2. Check your mail regularly. The state Medicaid agency will mail you a letter about the status of your Medicaid coverage. This letter will also let you know if you need to complete a renewal form to see if you still qualify for Medicaid.
  3. Complete and send in your renewal form (if you get one). Fill out the form and return it to your Medicaid agency to help avoid a gap in your Medicaid.
  4. If your Medicaid coverage has ended, visit HealthCare.gov to find an affordable, comprehensive health plan.

For more information, you can visit Medicaid.gov/renewals.

The Arc logo

Statement on the Killing of Tyre Nichols

/in /by The Arc

Washington, DC – As the public learns more about the killing of Tyre Nichols, The Arc stands in solidarity with his family and friends.

“Yet again, the nation watches another video exposing police violence against a Black man after a traffic stop.  We are horrified to witness the brutalization of an unarmed man. Tyre had Crohn’s disease, which made the blows against his very lean body more damaging. Another dying Black son is crying out for his mother and another Black life ended by people who pledge to protect all of us in our communities.

“We speak out in solidarity with Tyre’s family and friends because so many people in The Arc watch with horror as this happens again, and again – and our minds also go to the fear in all of us that people with disabilities within BIPOC or other marginalized communities can end up in the same deadly circumstances as Tyre, during a routine encounter with police.

“The Arc believes everyone belongs and will advocate tirelessly to make this happen. With their intersecting identities, all members of the disability community are valued, respected, and celebrated for who they are. And that belief is steadfast in solidarity with the Nichols family and friends, whom we offer our deepest sympathies and condolences for their loss,” said Peter Berns, CEO, The Arc.

As the largest community-based organization advocating for and with, and serving, people with intellectual and developmental disabilities (IDD) and their families, The Arc works tirelessly to uphold our vision “for people with IDD to be valued members of their communities, have the opportunity to achieve their full potential and a future that is secure.”

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.