the verizon logo in black on a white background

The Arc Receives Second Award From Verizon to Expand Disaster Preparedness Across the U.S.

For the second year, The Arc of the United States is pleased to receive an award from Verizon to further implement the Building Community Resilience Through Inclusive Disaster Preparedness program. With this funding, The Arc, along with The Arc Muskegon, The H.E.A.R.T. Program, Volunteer NY, and The Arc Nature Coast, will band together to host both online and in-person volunteer events that advance emergency preparedness in communities across the U.S. Participants will center on the perspectives and needs of people with disabilities during a disaster. These service opportunities will be featured on Citizen Verizon Volunteers, the company’s employee volunteerism portal, introducing V-teamers to The Arc’s constituents, and fostering opportunities for both communities to learn about each other.

Through the program, Verizon employees will again be offered a number of volunteering options, such as conducting mock 911 calls, creating no-sew blankets to shield against long winter nights, participating in letter-writing campaigns, creating disaster kits, and much more.

“The ongoing COVID-19 pandemic highlights the urgent need for communities, organizations, and businesses to strengthen their emergency plans so that people with disabilities are never left behind when disaster strikes. Verizon’s support allows The Arc to continue shaping the conversation around disaster preparedness, centering on individuals with disabilities. We are grateful and look forward to partnering with Verizon again,” said Peter Berns, CEO of The Arc.

A man stands at the front of a classroom with children sitting at desks listening in the foreground

The Arc Partners With Comcast NBCUniversal to Increase Access to Culturally Competent Special Education Services for Students of Color with Disabilities

Washington, D.C. – As special education students face the continuing challenges of the COVID-19 pandemic, The Arc is pleased to announce that it has been awarded a $200,000 grant from Comcast NBCUniversal to connect families of color and families from low-income households with students with disabilities to valuable educational advocacy resources. The grant will also help to ensure The Arc@School’s continued growth and success in assisting students and families for many years to come.

To expand support for students with intellectual and developmental (IDD) disabilities, the organization will provide 250 scholarships for The Arc@School’s Advocacy Curriculum. The Arc will also engage in a cultural competency review of its current curriculum to inform the next iteration, increase accessibility for families and improve the impact on student education. With Comcast NBCUniversal’s support, The Arc@School aims to disseminate special education resources to at least 350,000 people in 2022.

“We are proud of our long-standing partnership that supports The Arc in its mission to provide resources for all students with disabilities – and their families – so they can live independently and actively participate in their communities,” said Dalila Wilson-Scott, EVP and Chief Diversity Officer, Comcast Corporation.

Far too many kids are being left behind during the pandemic, particularly students with disabilities from marginalized groups. The Arc fights for all students to receive the benefits of public education in the least restrictive setting possible, as mandated by federal and state law. The Arc@School program supports families of students with IDD to successfully navigate the special education system and get the supports and services they need to thrive in school.

“Equal access to education for all students is an undeniable right in this country. The Arc is committed to nothing less for students with intellectual and developmental disabilities. We are thankful for Comcast NBCUniversal’s continued support of our education advocacy and broad impact on the program, especially during this time of constant uncertainty in education. Families of all backgrounds need quality support in navigating special education – and we must ensure that we provide these resources in a way that reflects the unique experiences among us,” said Peter Berns, Chief Executive Officer of The Arc of the United States.

About Comcast Corporation

Comcast Corporation (Nasdaq: CMCSA) is a global media and technology company that connects people to moments that matter. We are principally focused on connectivity, aggregation, and streaming with 57 million customer relationships across the United States and Europe. We deliver broadband, wireless, and video through our Xfinity, Comcast Business, and Sky brands; create, distribute, and stream leading entertainment, sports, and news through Universal Filmed Entertainment Group, Universal Studio Group, Sky Studios, the NBC and Telemundo broadcast networks, multiple cable networks, Peacock, NBCUniversal News Group, NBC Sports, Sky News, and Sky Sports; and provide memorable experiences at Universal Parks and Resorts in the United States and Asia. Visit www.comcastcorporation.com for more information.

The Arc advocates for and serves people wit¬¬h 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.

A close up of two sisters stand close to each other, looking at the camera and smiling.

Get to Know The Arc’s Sibling Council

Throughout the history of the disability rights movement, people with disabilities and their parents have been at the forefront in advocating for national and state services and programs. While siblings of people with intellectual and/or developmental disabilities (IDD) haven’t garnered as much attention, The Arc recognizes that siblings play a critical role in the lives of their sibling with IDD.

For siblings to be the best advocates they can be, it is important that they have access to information and resources that can help them make informed decisions, whatever their involvement. The Arc’s Sibling Council is one way for siblings of people with IDD to get access to resources and take part in The Arc’s grassroots advocacy efforts nationwide.

Members of the Sibling Council bring a wide range of expertise and passion, and they volunteer to serve a two-year term. Currently, the eight members are directing their advocacy efforts around two primaA close up of two sisters stand close to each other, looking at the camera and smiling.ry initiatives: competitive wages for direct support professionals (DSPs) and home and community-based services (HCBS). DSPs are a critical workforce that provides daily personal care and other independent living support services for many people with IDD. The National Sibling Council also hosts sessions at The Arc’s annual National Convention for siblings to connect and learn about ways to get involved in advocacy.

Liz Mahar, the Director of Family & Sibling Initiatives at The Arc, knows firsthand the importance of being an informed advocate. Liz has navigated her own challenges while supporting her sister, Crystal, from across the country. “As siblings, we can get lost in the day-to-day of supporting our loved one,” says Liz, “but it’s important to understand the ABCs of the service system in order to be an empowered advocate and more effective supporter.”

Hannah Roundtree, a member of The Arc’s Sibling Council, explains her family’s struggle in navigating the service system: “Growing up in rural Texas, my family faced a lot of challenges when it came to not only accessing supports and services for my brother, but even accessing the basic knowledge.” Hannah’s role on the council has allowed her to be a more effective advocate.

According to Acrystal Pugh from California, who joined the Sibling Council to improve the well-being and future of all siblings, siblings of people with IDD are the next best “line of defense.”

What can you do? Here are some ways for siblings of people with IDD to get involved and stay informed about The Arc’s advocacy movement:
• Register for The Arc’s sibling webinar on Tuesday, June 28 at 2:00 p.m. ET to learn about the resources and information available to all siblings.
• Connect with a state or local chapter of The Arc to join their advocacy efforts.
• Sign up for The Arc’s sibling newsletter and The Arc’s action alerts to become more engaged in disability advocacy.
• Contact Liz Mahar (mahar@thearc.org), the Director of Family & Sibling Initiatives at The Arc, to learn about future opportunities to join the Sibling Council.

Dominick a masculine appearing person with green eyes and brown spiked short hair gives a small smile. He is wearing gold wire-rim glasses and has some stubble and hair along his cheek line. This headshot shows from his mid-chest area upward. He is wearing a blue, black, and gray Argyle long-sleeve shirt. He sits in his wheelchair, and his black headrest wraps around the back of his head. The background is blurred, but you can tell there is grass behind him and he is outside.

Q&A: Father’s Day With Dominick Evans

Dominick Evans is a trans queer crip director/writer, consultant, Twitch streamer, and dad. They have a BFA in Film. Dominick’s work delves into inclusion in media, sex education for Disabled/LGBTQIA youth, marriage equality, institutional bias, and reproductive rights. In 2014, he founded #FilmDis, a Twitter chat about Disability in media.

Dominick has spoken around the world. He does video editing and works in Hollywood, consulting studios, to make the industry more inclusive. Dominick spends a lot of time streaming on Twitch – exploring accessibility and access. With their partner, Ashtyn, he releases an annual study into disability on television.

Recently, Dominick shared with us his experiences speaking with their autistic son about transitioning from female to male, celebrating his first Father’s Day, and what they want others to know about being a multiply disabled, trans dad.

Dominick a masculine appearing person with green eyes and brown spiked short hair gives a small smile. He is wearing gold wire-rim glasses and has some stubble and hair along his cheek line. This headshot shows from his mid-chest area upward. He is wearing a blue, black, and gray Argyle long-sleeve shirt. He sits in his wheelchair, and his black headrest wraps around the back of his head. The background is blurred, but you can tell there is grass behind him and he is outside.

[Image Description: Dominick, a masculine appearing person with green eyes and brown spiked short hair gives a small smile. He is wearing gold wire-rim glasses and has some stubble and hair along his cheek line. This headshot shows from his mid-chest area upward. He is wearing a blue, black, and gray Argyle long-sleeve shirt. He sits in his wheelchair, and his black headrest wraps around the back of his head. The background is blurred, but you can tell there is grass behind him and he is outside.]

What was it like to tell your son you were transitioning?

I started dating my girlfriend when her son was seven. By the time he was eight, his mom and I were in a serious relationship. We had moved in together, and it became clear that he wanted me to be more than just his mom’s partner. I always wanted children, so I was more than happy to commit to being his father. That’s the thing though. I knew that it was going to be a lifelong commitment and that I would have to change myself to be a better person – to be a better father for him. And that’s what I set out to do.

At the time I came out, I didn’t have the language to really talk about being non-binary. My son is autistic and really everything is very black-and-white to him. So, explaining my transition to him was going to have to be something I did very matter-of-factly, and that actually worked very well for our family.

My son was about eight when I came out to him. I just told him that I didn’t feel like a girl, and he said, “So you’re not my mom, you’re my dad?” And I said yes. Then he said awesome and asked me to go play Mario! That was pretty much it! Kids are very accepting of things because they have much more imagination than adults. I feel like as adults we kind of crushed our ideas of what the world could be, and instead, we focus on this very narrow view of how people should be. We are doing a huge disservice to not only our children but ourselves.

What has been your best Father’s Day so far?

On my first Father’s Day, after I came out, my son was very, very excited to buy me a present. When I opened it, it was matchbox cars! My dad, who had passed away a year or two before I got with my girlfriend, was a huge fan of cars and we had bonded over our love of classic cars when I was growing up. To share that with my son and pass that on was just so overwhelmingly beautiful. It was the most perfect, best first Father’s Day present, and I still have my car in the original packaging!

What do you want others to know about being a multiply disabled, trans dad?

The barriers my son and I face are not imposed by us. It’s the world that makes our lives difficult. We have a very happy, great family. When I started out, I had grown up in a very hostile environment. My family was all about yelling and I was mistreated a lot, particularly by my mother. I had to kind of work to really break those cycles of oppression. That was kind of on top of all the ableism we had to deal with, not only because I’m disabled but because my son is disabled.

Being a disabled dad with a disabled son, even if we don’t have the same disabilities, has been really helpful because I understand ableism in ways a lot of nondisabled parents don’t. Our life has been unconventional. Over the years I’ve done a lot of things that were more accessible to me. For example, I used to take him to do the shopping with me because he could help me put all the bags on my wheelchair and carry them home. Whereas my girlfriend would do things like helping with bathing and cooking his meals and physical things I couldn’t do.

We also homeschooled our son and I designed his curriculum. Being disabled and trans didn’t make the job difficult at all. I think at the end of the day it really enriched our life even more, and it also has made me more open to anything my son wants in life. All I want is for him to be happy, and if he is then I’ve succeeded as his dad!

Learn more about Dominick at DominickEvans.com.

Burt Hudson, wife Kim, and son Jack

Celebrate Father’s Day With Burt Hudson

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

A man, Burt Hudson, at the beach with his wife and two young children

For father, brother, and advocate Burt Hudson, Father’s Day is a time for his favorite “self-imposed tradition.” He’ll be cooking for his family: his wife, Kim, and two boys, Jack, who has Down syndrome, and James. “Being a dad, I hit the lottery,” says Burt. “The best thing I can do is thank the people who let me do it…They call me ‘Dad,’ you know?”

Burt chatted with us recently about how becoming a dad has impacted his life, and he shared some advice for other parents.

When Burt Hudson and his wife Kim were told that their newborn boy Jack had Down syndrome, they “didn’t miss a beat. He was our first kid…a beautiful little guy.”

Burt and Kim had reasons to embrace what is sometimes an unsettling diagnosis for new parents: Burt had grown up with a younger brother, John, who had a developmental disability called WAGR syndrome and who Burt introduces as the “best man in my wedding; also my best friend; also my little brother.” As a child, Burt did not understand why his brother had the challenges that he had and remembers being mad at God and the world for giving his brother a more difficult path.

Burt Hudson holding and sleeping with newborn son Jack who has a nose cannula in his nose for oxygen.The night Jack was born, Burt reflected on his lifelong friendship with and advocacy for John and told his wife Kim that “she would never have married the person I had become if not for my brother.” Armed with the right information, Burt and Kim felt they could provide Jack the support he needed to flourish: “I don’t know why our son Jack has these challenges, but you give him a couple of years or decades and we’re going to see how he starts to change the world.”

First, however, they needed to get home from the hospital. Burt remembers Kim saying, “Down syndrome be damned. I just want my son to live.”

Soon after Jack was born, he turned purple in the face while trying to breastfeed. He was admitted to the special care nursery and then transferred to the NICU at MedStar Georgetown University Hospital where his medical team, headed by Dr. Mohammed Abubakar, found a host of other medical issues.

Jack came home at four weeks wearing a nose cannula with an oxygen tank in tow. He spent his first three months on oxygen. He was monitored at night by a pulse oximeter that went off frequently and sounded like a “World War II air siren” whenever Jack would kick it off in the middle of the night, making the family dog bark, Jack start crying, and both parents’ nerves sizzle. Eager as Burt was to “open up the world” to Jack, he was also acutely aware that they needed to address his current challenges before moving on. When Jack was able to breathe on his own, Burt and Kim’s ever-present fear was able to give way to research and preparation.

A young toddler, Jack, is sitting surrounded by toys. He has a big smile.

Anticipating the extra assistance Jack would need, Burt and Kim dramatically reorganized their lives. Kim left her job so she could keep track of the “crazy schedule” of Jack’s doctors’ appointments and therapies, as well as learn the languages that doctors, therapists, and eventually the school systems spoke.

Both Burt and Kim expanded their advocacy efforts. Burt had already been volunteering for The Arc: he was connected at first with The Arc of Atlanta by his mom, worked for The Arc of Virginia for 11 years, served on the Budget and Finance Committee for The Arc of the United States, and was recently appointed to the board.

Burt and Kim (pregnant with James), with Jack in tow, met at the capital with Senator Warner and other family advocates from The Arc of Virginia about the need for community-based services. Kim combined her health and communications knowledge with her new experiences with Jack to start a business assisting organizations that help build inclusive communities and support people with intellectual and developmental disabilities (IDD).

Kim is also the treasurer of the Down Syndrome Association of Northern Virginia. Together, they started a small foundation and a Coffee for Caregivers program, dedicated to Dr. Abubakar, to supply the Georgetown NICU with coffee for parents, caregivers, and staff alike.

A young boy, Jack, kisses his newborn baby brother.

Burt’s professional life was influenced by Jack’s birth. As COO of Leading Age, Burt serves members of the association who care for the needs of the elderly and some individuals with IDD. Having both a son and brother with developmental disabilities helps him to understand the needs of his members. “As a compassionate society, we have to take care of others: the elder population, people with special needs, people who do not have a lot of economic resources,” says Burt. “I’m sure there are a lot of people who live in their little bubble where they don’t see people who may have a more challenging path, but I’ve never known anything different.”

Apart from volunteering for a political or charitable organization, Burt also asserts that “a critical part of advocacy is just love, compassion, and acceptance” and leading through example. He remembers a time growing up when he and his brothers were in the ocean in Florida wrestling. They were just three brothers carousing, even though his younger brother John was going through chemotherapy and had hair loss and a port in his chest. “Nobody stopped the Hudson brothers from wrestling. No medical thing, no nothing. And my little brother was throwing the biggest punches. Some lady walked by and said to my mom, ‘Isn’t that sweet? They’re just brothers.'” The same can be said of how Jack (now 7) plays with his younger brother James (4). They have been a duo ever since James was born.

Burt Hudson, wife Kim, and son JackAs far as advice for other dads, Burt emphasized the need for information and resources to help Jack over his hurdles. Importantly, though, Burt champions that “every child is different. There is no playbook for anyone…Love your kid. Love your partner…If you love your child as much as you can today, tomorrow will get figured out.”

How to Get Information and Support

If you need help or information about IDD, please reach out to us. You can find your state and local chapters here or you can use our contact form here.

We also encourage you to get involved with our advocacy efforts to ensure that all families can access the resources that they need. Learn more at thearc.org/action.

A woman with shoulder length curly brown hair wearing a blue turtleneck sweater and tortoise frame glasses.

The American Constitution Society Awards 2022 David Carliner Public Interest Award to Shira Wakschlag, The Arc’s Senior Director of Legal Advocacy

Washington, D.C. – The Arc and the American Constitution Society (ACS) are proud to announce that The Arc’s Senior Director of Legal Advocacy and General Counsel, Shira Wakschlag, is the recipient of the 2022 David Carliner Public Interest Award. This prestigious award honors a mid-career public interest attorney whose work best exemplifies David Carliner’s legacy of fearless, uncompromising, and creative advocacy on behalf of marginalized people.

“I am tremendously honored to receive this award,” said Wakschlag. “I share it with my colleagues at The Arc and around the country who I have the privilege of collaborating with and learning from every day. In the face of ongoing existential threats to our fundamental civil rights, it is critical that disability be part of the conversation as we fight these injustices. I look forward to opportunities to partner with the ACS community in this work to ensure that people with disabilities receive needed supports and accommodations to obtain equal access to society and thrive in all aspects of life.”

Wakschlag will accept the David Carliner Public Interest Award in person and deliver remarks at the ACS National Convention that will take place June 16-18, 2022 at the Marriott Marquis in Washington, D.C.

Wakschlag is an extremely accomplished and widely respected leader in the area of disability civil rights law. She has led The Arc’s national disability rights litigation practice since 2014, expanding it into a wide-ranging and high impact program that advances the rights of people with intellectual and developmental disabilities under federal disability and civil rights laws and the U.S. Constitution. Her work at The Arc has also been instrumental in highlighting and combatting intersectional injustice in a range of areas, including voting rights, special education, the criminal legal system, and medical discrimination.

“I am proud to announce Shira Wakschlag as this year’s recipient of the Carliner Award,” said ACS President Russ Feingold. “ACS is committed to fighting for a just legal system that addresses the harm done to historically marginalized people. Shira has spent her career advocating for people with disabilities, safeguarding their voting rights, and advancing community-based solutions, all while also fighting against medical discrimination and the exclusion of students with disabilities in schools. I commend Shira and The Arc for their work to uphold the Constitution and ensure that the law is a force for protecting our democracy and the rights of all.”

Wakschlag has fought for inclusion for students with disabilities—disproportionately students of color—who are too frequently relegated to separate programs and even separate schools where they are isolated from non-disabled peers and receive an inferior education.

Wakschlag was also instrumental in challenging discriminatory state and hospital crisis standard of care policies at the onset of the pandemic, working with state and national partners to file fourteen federal complaints with the Office for Civil Rights (OCR) at the U.S. Department of Health & Human Services. These efforts led to favorable resolutions in several states making clear that federal law requires states and health care providers to ensure patients with disabilities have equal access to life-saving medical care.

“The Arc is honored to see Shira receive this well-deserved recognition from the American Constitution Society. Shira’s passion and commitment to advancing the civil rights of people with disabilities through legal advocacy has empowered disabled lives and exponentially elevated The Arc’s legal impact,” said Peter Berns, CEO of The Arc of the United States. “Shira sets extremely high standards in legal advocacy in uplifting The Arc’s mission to promote and protect the human rights of people with intellectual and developmental disabilities and actively support their full inclusion and participation in the community throughout their lifetimes. We applaud Shira and thank ACS for their support.”

Wakschlag has also worked to advance the rights of people of color with disabilities who are unjustly entangled in the criminal legal system, advocating for community-based services and treatment as alternatives to incarceration. She is currently working to challenge voter suppression laws that disenfranchise voters with disabilities and voters of color, denying them access to democracy.

“Shira’s work on behalf of the disability rights movement at large is most deserving of recognition with the Carliner Award. She is an extraordinarily gifted lawyer. Her tireless efforts have not only advanced the interests of people with disabilities but have highlighted and elevated the intersection of disability civil rights with critical issues of our time, including racial justice, voting rights, health care disparities, long-term care and supports, decarceration, capital punishment, and equitable access to housing, education, and other community resources – with added benefit for all,” said University of Pennsylvania Professor of Law Jasmine Harris, chair of The Arc’s Legal Advocacy Committee and member of The Arc’s Board of Directors and Executive Committee.

In addition to Wakschlag, Atteeyah Hollie, Deputy Director of the Southern Center for Human Rights, will be honored as this year’s Finalist. The honor is in recognition of her work challenging the denial of counsel to lower-income Georgians, while fighting against wealth-based detention, and inhumane prison conditions. Visit ACS’s 2022 National Convention web hub for more information on events, speakers, and COVID protocols.

AMERICAN CONSTITUTION SOCIETY

ACS believes that the Constitution is “of the people, by the people, and for the people.” We interpret the Constitution based on its text and against the backdrop of history and lived experience. Through a diverse nationwide network of progressive lawyers, law students, judges, scholars, and many others, we work to uphold the Constitution in the 21st Century by ensuring that law is a force for protecting our democracy and the public interest and for improving people’s lives. For more information, visit us at www.acslaw.org or on Twitter @acslaw.

THE ARC OF THE UNITED STATES

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.

The Arc logo

In Solidarity With the Community of Uvalde, Texas

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

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

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

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

The Arc logo

Scientists Say FDA’s Refusal to Ban Neurotoxic Chemicals from Food Processing/Packaging Threatens the Nation’s Children with Lasting Harm.

Prenatal exposures to phthalates are linked to learning and behavioral problems including attention disorders; exposures are higher in children of color.

Washington, DC — Leading scientists and health professionals of Project TENDR say FDA’s refusal to ban phthalates from food processing and packaging flies in the face of rapidly accumulating evidence that phthalates do lasting harm to children’s brains. Contrary to this evidence, FDA today denied two petitions to eliminate the use of phthalates in food packaging and food production equipment, while acknowledging that its own assessment of phthalates’ safety for use in food-contact materials is out of date.

Though FDA simultaneously granted an industry petition to abandon certain food contact uses of phthalates, its decisions leave numerous authorizations in place that perpetuate phthalate contamination of the food supply.

FDA’s failure to grant the petitions poses an egregious and entirely preventable threat to expectant parents, infants, and children. In 2021, Project TENDR researchers published a seminal article in American Journal of Public Health identifying phthalates as neurotoxic chemicals that increase children’s risks for learning, attention, and behavior disorders.

Starting in 2016 and as recently as April 2022, Project TENDR experts submitted scientific comments to FDA in strong support of two petitions filed by the Natural Resources Defense Council, Center for Science in the Public Interest, Center for Environmental Health, Center for Food Safety, Clean Water Action, Consumer Federation of America, Earthjustice, Environmental Defense Fund, Improving Kids’ Environment, and Learning Disabilities Association of America, requesting that FDA eliminate its approval of ortho-phthalates as food additives in food contact substances.

While nearly everyone – including pregnant women – has detectable levels of phthalates in their bodies, Black and Latina women have higher exposure to phthalates than White women, independent of income level. Phthalates readily transfer from the mother to the fetus. In addition to lasting impacts on children’s brains, phthalates have long been known to harm reproductive tract development in male babies.

“There are dozens of studies finding adverse associations between phthalate exposure and multiple aspects of brain development, including effects on behavior, cognitive function and even brain structure, says Dr. Stephanie Engel, University of North Carolina at Chapel Hill Gillings School of Global Public Health, who in 2021 founded an NIH and EPA-funded brain imaging center to identify changes resulting from phthalates exposures. “There is no compelling rationale to continue waiting for more evidence when phthalates can be eliminated now from food packaging and processing.”

“FDA’s failure to act to get phthalates out of food is creating a serious public health problem of great magnitude,” says Dr. Ami Zota, George Washington University Milken Institute School of Public Health and an internationally recognized expert on the racial and socioeconomic disparities in phthalates exposures and health effects. “Until FDA reverses course, the health burdens from phthalate exposure in food will continue to disproportionately harm people of color, people of low wealth, and babies and young children undergoing critical periods of growth and development.”

Dr. Russ Hauser, Harvard T.H. Chan School of Public Health and Harvard Medical School, and co-author of the 2014 Chronic Health Advisory Panel (CHAP) report on phthalates that was used by the Consumer Product Safety Commission (CPSC) to justify banning certain phthalates from toys, states: “Eight years after the CPSC acted to protect children from phthalates in toys, the FDA still refuses to protect children from phthalates in food. No pregnant woman or child should unknowingly be ingesting phthalates with their breakfast, lunch or dinner.”

Experts available for interview:

Stephanie M. Engel, PhD, Professor, Gillings School of Global Public Health, University of North Carolina, Chapel Hill

Dr. Engel’s research considers the impact of environmental exposures and innate susceptibility factors on adverse pregnancy outcomes and neurodevelopmental impairment in children. Her research has identified a link between prenatal phthalates exposures and increased risk of attention disorders in children. Dr. Engel is Director of the UNC Center for Early Life Exposures and Neurotoxicity, and Deputy Director of the Center for Environmental Health and Susceptibility. In 2021, she was awarded major EPA and NIH grants to investigate the developmental impacts of neurotoxic chemicals. As part of Project TENDR, Dr. Engel is lead author of the seminal article, “Neurotoxicity of Ortho-Phthalates: Recommendations for Critical Policy Reforms to Protect Brain Development in Children,” American Journal of Public Health, February 2021.

Ami Zota, ScD, MS, Associate Professor, Milken Institute School of Public Health, The George Washington University:

Dr. Ami Zota is an internationally recognized expert in environmental health science and environmental justice. Her scientific research focuses on how the public is exposed to phthalates and the disproportionate harm phthalate exposure causes to people in certain populations, such as Black and Latina women of reproductive age. Her research has increased awareness of the link between fast food and phthalate exposures among the scientific community, policy makers, and the general public. Most recently, her research group found widespread detection of phthalates and other plasticizers in popular fast food meals, demonstrating that phthalates leach from processing equipment and packaging into food. She is a co-author of the 2021 Project TENDR phthalates article in AJPH.

Russ Hauser, MD, ScD, MPH, Frederick Lee Hisaw Professor of Reproductive Physiology, and Professor of Environmental and Occupational Epidemiology, Harvard T.H. Chan School of Public Health; Professor of Obstetrics, Gynecology and Reproductive Biology, Harvard Medical School

Dr. Hauser’s research focuses on the effect of environmental chemicals on male and female fertility, pregnancy outcomes and children’s health. He led a 20-year NIH-funded study of the effects of endocrine disrupting chemicals, including phthalates, on male and female reproductive health. Dr. Hauser is currently conducting an NIH-funded study on the effect of maternal and paternal exposures to environmental chemicals on children’s health, growth, and neurobehavior.  Dr. Hauser was co-author of the 2014 Chronic Health Advisory Panel (CHAP) report on phthalates that the Consumer Product Safety Commission (CPSC) used to ban certain phthalates from toys. He is a co-author of the 2021 Project TENDR phthalates article in AJPH.

Project TENDR which stands for “Targeting Environmental Neuro-Development Risks,” is a collaboration of leading scientists, health professionals, and advocates protecting children’s brains from toxic chemicals and pollutants. Project TENDR is a program of The Arc.

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy, and other diagnoses. The Arc has a network of nearly 600 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

The Arc logo

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

Washington, D.C. – The Arc released the following statement in reaction to the racially motivated mass shooting at a grocery store in Buffalo, New York.

“We are horrified by the racially motivated mass shooting in Buffalo, New York Saturday. We reject hate and no one should be in danger of being murdered because of the color of their skin. The motives and actions of the shooter, and the racist and antisemitic white supremacist conspiracy theories he, and those who sympathize with him, have espoused are sickening.

“Our country is experiencing an undeniable and very long crisis. White supremacy has been woven into the fabric of our existence for centuries, and despite incremental progress –we clearly have a long way to go. We must take down all systems of oppression that threaten and stand in the way of race equity and inclusion.

“The disability community includes individuals who are Black, Indigenous, and people of color (BIPOC) and we are in allyship with the Black community in Buffalo and everywhere. We refuse to stay silent when time after time, racist extremists in our country terrorize people of color, a deep-rooted sickness that should anger us all.

“We are all people. Everyone belongs. We honor the people who lost their lives and those wounded in Buffalo at the hands of this evil. We reject racism and hate, with the strong resolve to help tear down these walls of racism, white supremacy, and oppression,” said Peter Berns, CEO, The Arc.

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of nearly 600 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

The United States Capitol Building

Testimony: The Crucial Importance of Social Security Benefits for People With Disabilities

This week, The Arc testified before the Committee on Ways and Means, Subcommittee on Social Security, in the U.S. House of Representatives on the urgent need to strengthen Social Security—including their customer service—for people with disabilities.

Below is a summary of Lilly’s remarks before the committee. You can access her full testimony here.

Chairman Larson, Acting Ranking Member Hern, and members of the Subcommittee, thank you for inviting me to testify about the importance of the Social Security Administration’s (SSA) customer service for people with disabilities. My name is Bethany Lilly and I am the Senior Director of Public Policy at The Arc of the United States.

As you noted, I am testifying on behalf of the Consortium for Constituents with Disabilities (CCD) Social Security Task Force. I will focus my remarks on three things: the importance of Social Security providing strong customer service to people with disabilities, the current backlog of cases, and the solutions needed to address these customer service challenges.

For millions of people with disabilities, including veterans, Social Security disability benefits provide crucial income support. In 2021, the average disability benefit was $1,143 per month, which is less than $14,000 a year. These benefits are extremely modest, but they help people with disabilities and their families pay the rent and buy groceries.

To access these benefits, people with disabilities must navigate the incredibly complex disability determination process. It shouldn’t take a law degree to navigate these labyrinthian rules, especially since these benefits are designed to help those with disabilities who often, by definition, will require assistance with paperwork. But this complexity requires high-quality service from SSA to ensure a well-trained staff can answer complex questions.

While disability benefits are SSA’s most complicated programs, SSA also helps people with retirement benefits, name changes, enumeration for new citizens and new babies, Medicare enrollment, and many other functions.

In March 2020, all of these functions abruptly shifted online, over the phone, or via mail as the hundreds of Field Offices across the country closed due to the pandemic. The agency managed this transition despite over a decade of underfunding that has left SSA at distinct disadvantages, especially with regard to staffing and outdated technology. As Tracey Gronniger from Justice in Aging discussed in more detail, there is a desperate need for in-person services, especially for low-income older adults and people with disabilities who face disparities in access to the internet and may have limited phone minutes.

We are glad that SSA began reopening their offices last month, in no small part because of the growing challenges that SSA faces. Estimates suggest that more than half a million people have not received the SSA disability benefits to which they are entitled over the past two years, even taking into account recent declining trends in applications. And while we are not sure how many people experiencing continued symptoms from a COVID-19 infection (those known as long-haulers or people with Long COVID), will meet the extremely strict Social Security disability standard, we do know that Long COVID can complicate other existing conditions, so more SSA cases should be expected.

Part of this decline is no doubt related to the current backlog of people who have applied and are awaiting an initial or reconsideration decision. There are now 1 million of these cases and on average, people are waiting 6 months for an initial decision and 6 months for a reconsideration appeal. This is nearly twice as long as in the past. As Congress did when we faced a similar backlog issue for hearings before an Administrative Law Judge (ALJ), this issue can be addressed with targeted funding for backlog reduction. SSA has shown that when it is given the right funding, it can get the job done.

And as I mentioned before, SSA has also been underfunded for over a decade. Since 2010, SSA’s operating budget has fallen 14 percent, with an associated drop in staffing of 13 percent. During the same time period, the number of Social Security beneficiaries has grown by 21 percent. It is a credit to the employees of SSA that the millions of people who turn to SSA in their times of need are able to be served at all, even if such service is often minimal and in many cases inadequate.  This long-term funding deficit is a problem that Congress must act now to address!

In addition to addressing this funding crisis, we would urge action on the Chairman’s Social Security 2100: A Sacred Trust Act which has a number of benefits and customer service improvements. In particular, we are glad that Acting Commissioner Kijakazi addressed the inflationary concerns raised by advocates and increased the representative’s fee cap last week, but it would be very helpful for Congress to index the cap to inflation as the Chairman’s bill does. And there are other desperately needed improvements detailed in my testimony.

Thank you for the opportunity to testify today. I look forward to taking your questions.