Archive for category: Advocacy

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

June 14, 2022/in Advocacy, Grassroots/by The Arc

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 primary 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.

Q&A: Father’s Day With Dominick Evans

June 14, 2022/in Advocacy, Grassroots/by The Arc

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.

[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.

Celebrate Father’s Day With Burt Hudson

June 13, 2022/in Advocacy, Grassroots/by The Arc

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

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.

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.

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.

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.

As 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.

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

May 16, 2022/in Advocacy, From Our Chapters, From the Frontlines, Grassroots, News, Press Releases/by The Arc

BROOKVILLE, N.Y. – As issues at the intersection of disability and race remain under-recognized due to a lack fluency or awareness, nonprofit agencies AHRC Nassau and The Arc of the United States are responding with a free, online conference on Wednesday, May 18, 2022 to connect attendees of all abilities and backgrounds with research, best practices, and most importantly, with each other.

The Diversity, Equity & Inclusion (DEI) Virtual Conference, “Beyond the Comfort Zone: Understanding and Eradicating Injustice, Racism and Inequality in the Field of Developmental Disabilities,” will explore the history, the latest research, and opportunities for the increased inclusion of people with intellectual and developmental disabilities (IDD) as well as recognition for direct care staff, who are primarily Black, Indigenous, and people of color (BIPOC).

“Disability is an underdeveloped area of DEI. For those with no prior connection to the experience of disability or the underlying issues related to race, there can be shame and hesitation in trying to discuss these issues—or worse, silence,” said Stanfort J. Perry, Conference Chair and CEO of AHRC Nassau. “The purpose of this online conference is to create a platform offering the latest insight on the intersectionality of issues pertaining to ableism and racism—to encourage questions, conversations, and above all, shine a spotlight on those whom society has marginalized.”

More than 30 years since the passage of the Americans with Disabilities Act, people with disabilities remain one of the most marginalized groups – at high risk of violent crimes to contracting and dying from COVID-19. Their essential support staff, who make tasks of daily living and participation in the wider community possible, are predominantly women of color who have spent years advocating for a living wage. According to a report from the University of Minnesota – Institute on Community Integration and The National Alliance for Direct Support Professionals, “Black/African American Direct Support Professionals (DSPs) were paid less per hour than white DSPs, and a higher percentage of Black/African American DSPs worked 40 or more additional hours per week.”

Though there is overwhelming need, an overall lack of funding has resulted in a 43% national turnover rate in the direct care workforce and a staffing crisis. Self-advocates, like Jessica Campbell, have advocated for years for necessary funding to ensure services and supports to lead an independent life. “Imagine not being able to get medication, access money, stay clean, cook, do your job, or go out into the community—that’s what a staffing crisis means to us,” said Campbell, who is currently a member of AHRC Nassau’s Board of Directors and a Field Assistant for the Long Island Region at the Self-Advocacy Association of New York State.

The upcoming DEI Virtual Conference is important to Campbell because in addition to addressing some of these issues during a conference panel, she hopes “more people have a chance to be understood and that more people can begin to understand the experience of disability.”

For Peter Berns, CEO of The Arc of the United States, “Disability providers, at the state and federal level, are working within legal, legislative, and service frameworks that can be complex and difficult to navigate regardless of whether you receive services, work in the industry, or seek to understand as an outside observer.

“Within these systems, people with disabilities and their direct care staff can become further and further removed from the action of daily life, and lead lives in parallel to their peers without disabilities—with few interactions, largely unseen and unheard,” said Berns. “The DEI Virtual Conference speaker lineup will offer valuable perspectives on how meaningful change must be the result of collective partnership and advocacy across all facets of society.”

Conference keynote and civil rights advocate Dr. Kimberlé W. Crenshaw will provide insight into the “intersectionality” framework—a concept she pioneered—addressing how overlapping identities, such as disability, gender identity, and race, can lead to complex, and sometimes under-recognized, issues of inequity and inequality. Dr. Crenshaw currently serves as the Isidor and Seville Sulzbacher Professor of Law at Columbia Law School, as well as a Distinguished Professor of Law at the University of California, Los Angeles.

Examining the existing support systems and how to reach a more inclusive future is the focus of the plenary session lineup. Plenary Speaker Kerri E. Neifeld, Commissioner of the Office for People With Developmental Disabilities (OPWDD) in New York State, will present how her office is working to stabilize, professionalize, and strengthen the direct support workforce following the pandemic, while also advancing diversity, equity and inclusion in the developmental disabilities field.

Plenary Speaker Tawara Goode, Associate Professor and Director, Georgetown University National Center for Cultural Competence, will evaluate cultural and linguistic competence in the industry’s collective efforts to advance DEI, and more specifically, what it means to achieve outcomes in the IDD space, while Plenary Speaker Atif Choudhury, CEO of the UK-based company, Diversity & Ability, will share insights from his lived experience and career on topics ranging from how to evaluate an organization’s progress toward a fully inclusive culture to proactive acknowledgments of intersectionality.

“The quality of insight and dedication to advancing social justice outcomes at this conference is exceptional,” said Perry. “With more than 30 sessions, including speakers from a variety of professional disciplines and backgrounds, we are anticipating a day of learning and connection that advances a more inclusive and equitable future for all. That’s why the conference recordings and an event toolkit will be freely available for a year following the event. This event is intended to serve as a resource, informing and empowering more organizations and individuals.”

The DEI Virtual Conference “Beyond the Comfort Zone: Understanding and Eradicating Injustice, Racism and Inequality in the Field of Developmental Disabilities” will be held on Wednesday, May 18 from 8:30 a.m. – 6 p.m. ET at ahrc.org/deiconference. The event is free and open to all. Closed captioning will be available for all sessions; American Sign Language is available for plenary and select sessions.

FREE NASW Continuing Education Credits Available NASW-NYS is recognized by the New York State Education Department’s State Board for Mental Health Practitioners as an approved provider of continuing education for licensed social workers (Provider ID #0014), licensed mental health counselors (Provider ID #MHC-0053), and licensed marriage and family therapists (Provider ID #MFT-0037), and licensed psychologists (Provider ID #PSY-0088)

About Us
AHRC Nassau, a chapter of The Arc New York, is one of the largest agencies in New York State supporting people with intellectual and developmental disabilities (IDD). Based in Nassau County, the nonprofit empowers people to lead fulfilling lives, together with family, friends and community. AHRC’s programs include a wide array of supports for people with disabilities and their families, including vocational and employment services, adult day habilitation and community-based services, guardianship, family support services and respite/ recreation opportunities, as well as residential services. AHRC Nassau is part of an elite group of international agencies accredited by CQL | The Council on Quality and Leadership for Person-Centered Excellence Accreditation With Distinction. AHRC is also one of four agencies accredited by New York State’s Office for People With Developmental Disabilities as a Compass agency, which is the highest level of accreditation offered. For more information, visit www.ahrc.org.

The Arc of the United States advocates with and serves people with intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy, and other diagnoses. The Arc has a network of nearly 600 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes. For more information, visit thearc.org.

For more information, please contact Nicole Zerillo, assistant director of Community Resources, AHRC Nassau, at 516.626.1075, ext. 1134, or nzerillo@ahrc.org.

SOURCE AHRC Nassau

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

A teenage girl with Down syndrome standing in a yard in front of a white fence with an older family member. The woman is laughing, with her hands on her granddaughter's shoulders. They are both looking at the camera.

Thank You, Moms!

May 6, 2022/in Advocacy, From the Frontlines, Grassroots, Public Policy/by Pam Katz

Mother’s Day is a time to celebrate mothers and the mother figures who strengthen and support us in our lives. We want to recognize and honor the fierce mom advocates who have shared their stories and struggles, and the strength to fight for families nationwide.

This past year, moms nationwide raised their voices for a historic investment in Medicaid home and community-based services (HCBS) so that everyone can get the support they need to live in their community.

Andrea from Virginia, Julie from Texas, and their families shared their struggles as they wait for nearly a decade for HCBS that can help their children get the critical care they need at home. While family time comes with much joy and love, Julie knows that “[she’s] not going to live long enough to be her [child’s] direct caregiver forever.”

In October 2021, Pennsylvania disabled mom and activist, Latoya, came to Washington, D.C., to a storytelling vigil at the U.S. Capitol to share why HCBS matters to her and her family.

I came here today because I am literally fighting for my life and freedom…. Home and community-based services and accessible housing keep me from being stuck in an institution to get my needs met-something nobody of any age wants. I want Congress to understand that their political games are putting my life and my freedom at risk, and to stop the posturing and realize what your inaction is doing to real people.

Virginia mom and sibling, Laurie, shared her and her sister Amy’s story of transitioning from an institution to receiving HCBS in a group home and how this change helped her sister grow, even though it was a scary change for their family.

California mom, Amparo, was concerned that her son Jesus and other Latino families might struggle to access disability supports and services like HCBS. From this concern, Amparo joined forces with mothers in her state to launch a local chapter of The Arc, Madres Unidas Para Una Mendota Con Igualdad of The Arc. This chapter is dedicated to fearlessly confronting disparities and racism and ensuring all people can access disability services.

On March 30th, New York mom, Laura, spoke about her family’s need for HCBS at a rally at the U.S. Capitol and entreated Congress to act urgently and boldly to support people with disabilities and their families.

The rippling effects of our crumbling care system impact everyone. We have a crisis in this country as the salaries of direct support professionals do not match the important work they do…. We need a well-trained and stable workforce for continuity and quality of care! Building bridges to caregiving leads to the building of bridges in all our lives.

And this past week, moms Dena, Faye, Nancy, and Soojung shared on our Facebook page why HCBS are essential to their families and why services must be preserved and expanded.

Moms nationwide have also fought for other significant changes to protect and support their families and others.

In Iowa, moms Charmain, Heather, Erin, and Nancy all advocated to challenge laws that would ban schools from requiring masks. Because their children experience disabilities and underlying health conditions that would make them particularly susceptible to severe illness or death from COVID-19, they argued that this ban would effectively exclude their children from public schools and deny them equal access to education.

Mom and advocate, Micki, shared her family’s experience with Social Security’s complex rules around benefits – and how earning around $300 too much 14-15 years ago nearly disqualified her son from receiving future benefits that would help him live independently in the community.

And last but certainly not least, Debbi and Kerri both detailed the impact that not being able to access paid leave had on their family. Debbi often worked through the night to meet her deadlines and keep hold of their health insurance that kept her child alive. Kerri and her family were forced to rely on a GoFundMe campaign to pay for their mortgage, utilities, and essentials so they would not lose their home.

THANK YOU to these moms and to all our moms and mother figures in our lives who strengthen us, support us, and work tirelessly to make lives better – not just for their families, but for everyone.

The Arc Supports Bill to Allow People With Disabilities to Earn and Save More Money

May 5, 2022/in Advocacy, Featured Posts, Grassroots, News, Programs and Supports, Public Policy/by The Arc

Washington, D.C. – The Arc supports a bipartisan bill introduced in Congress to finally give people with disabilities and older Americans significantly more freedom to earn and save money without risking the loss of vital benefits, their livelihoods, and their ability to support themselves and members of their family. The SSI Savings Penalty Elimination Act, introduced by U.S. Senators Sherrod Brown and Rob Portman on Tuesday, updates Supplemental Security Income (SSI) asset limits for the first time since the 1980s. Current SSI asset limits prevent individuals who receive the modest benefit from saving more than $2,000.

The bill raises SSI asset limits from $2,000 to $10,000 for individuals and from $3,000 to $20,000 for married couples and indexes them to inflation moving forward. SSI provides money to 8 million adults and children with disabilities and older Americans. Many recipients are Black, Hispanic, and other people of color and further marginalized – making it even more critical that Congress pass this bill.

“The SSI Savings Penalty Elimination Act is a positive step forward in The Arc’s ongoing push to give millions of people with disabilities the economic opportunity they deserve and more financial security to save for emergencies and unexpected expenses. We see too many people with disabilities and their families forced to impoverish themselves in order to maintain critical SSI benefits, instead of being able to save for the future and for emergencies that arise in all of our lives,” said Peter Berns, CEO of The Arc of the United States. “Raising asset limits would significantly improve the lives of people with IDD who receive SSI.”

For many years, The Arc has advocated relentlessly for changes to SSI asset limits and against the existing unfair and discriminatory caps. Along with advocates, we have continuously urged Members of Congress to update SSI asset limits to at least adjust for inflation, so that people with disabilities can take advantage of financial opportunity to provide for themselves and their families and feel a better sense of financial security.

The Arc sent a letter to Senators Brown and Portman in support of the bill. Read it here.

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Making it Personal: Continuing the Fight for Home and Community-Based Services

March 28, 2022/in Advocacy, From the Frontlines, Grassroots/by Pam Katz

For decades, people with disabilities have expressed their undeniable preference to live among family and friends in their own community. Just ask Kayte: “I [want to] tell Congress how much I want to live out in the community one day and how I need HCBS (home and community-based services) to do so.”

HCBS support people with disabilities by giving them the tools to independently engage in everyday activities such as working at a job in the community, making food and eating, managing money and medications, bathing and dressing, and more. Unfortunately, for Kayte and many others, life in the community remains a dream. Currently, 800,000 people with disabilities remain on waitlists, with no access to these services due to insufficient funding and direct support worker shortages.

The Arc and our network of people with disabilities, family members, and allies have continued to relentlessly push for additional funding to address this crisis. But it’s the stories from the people who rely on these invaluable services themselves who make the most compelling case for why we must invest in them.

“Thanks to my HCBS waiver I can be a part of my community, safely be transported to and from work, participate in activities in the community/with my friends, practice meal prep and cleaning etc. I have autism and my waiver has covered sensory equipment to help meet my sensory needs.” – Chloe

“I only receive in home supports, supports to help me with day to day things, help making sure food is still good, not spoiled, and help with cooking….I have choice in who my staff is — it’s all family. These items listed allow me to remain in the home, and be very independent. I cook my own meals, wash my own laundry, do my own grocery shopping.” – Kayte

“My supportive employment helps me keep a job in the community and provide support when needed. Because of supportive employment I am able to work as a peer support specialist at my local [chapter of The] Arc and also volunteer at American Red Cross. Without all these services I wouldn’t have the necessary supports in order to do things independently. The importance of HCBS Services is very critical to many people with disabilities. If you make cuts to these services or limit the services, it puts a barrier on the person with a disability as well as the person providing service(s). These services help me in my life and my life would look different without these services.” – Joe

“I have 10 1/2 hours, seven days a week [for HCBS] and can only hire [four] people. Another thing is that CMS (Centers for Medicare & Medicaid Services) needs to pay more for its workers—the reimbursement rate is not enough for us to compete with any other easy job out there. I am 38 and without HCBS services I would be forced into the nursing home and lose everything I’ve worked my whole life for and my precious little dog who is my life.” – Jen

“COVID-19 has exacerbated systems such as Personal Care Attendant services that were already broken. A Medicaid Consumer Directed Attendant’s paycheck has never been close to a living wage pay rate. What that translated to during COVID-19 is I could not find attendants to assist me with activities of daily living in my home. Inequitable attendant pay rates created a barrier to me to access Home and Community Based Services (HCBS).” – Ivy

While negotiations for HCBS legislation continue, there remains strong commitment for the cause in Congress. Now is not the time to back down. We must continue to educate about the importance of HCBS for people with disabilities and their families so that we can secure the funding we desperately need.

Every story matters. Share yours now with The Arc’s action alert!

The Arc Unifies With People With Disabilities in Ukraine

March 22, 2022/in Advocacy, News/by The Arc

Washington, D.C. – The Arc is closely watching the horror unfold in Ukraine and thinking of the millions of adults and children with disabilities who are in harm’s way. It’s estimated that 2.7 million people with disabilities live in Ukraine, including thousands living in institutions. According to news reports, a care facility for people with disabilities was bombed, leaving residents without heat, water, and electricity. We know that food shortages are happening and many people with disabilities are cut off from medications and support services.

According to AccessAbility, 82,000 Ukranian children with disabilities are segregated in institutions and are at risk of abandonment. And the organization says only 4% of Ukraine’s infrastructure is accessible to people with disabilities. Ukraine is using underground subways as bomb shelters. However, according to Accessibility, “the vast inaccessibility of the country’s infrastructure means disabled people are not being give safety in their bomb shelters.”

We support Disability Rights International (DRI) in their calls for urgent action to protect people with disabilities and children in Ukraine’s orphanages. We fully back DRI in urging immediate attention to “protect people with disabilities in Ukraine and ensure their full inclusion in international relief efforts.”

We share DRI’s concern for adults with disabilities living in institutions in Ukraine. We fear they could be left behind as people in Ukraine escape the violence. We also fear that people with disabilities will be abandoned in all the chaos.

The Arc also supports the calls of The European Disability Forum (EDF). EDF is calling for the protection and safety of people with disabilities in Ukraine by respecting:

Their obligations under the United Nations Convention on the Rights of Persons with Disabilities
The U.N. Security Council Resolution 2475 on Protection of Persons with Disabilities in Conflict
International Humanitarian Law and the Humanitarian Principles

“Hour by hour, Ukrainians are fighting to survive, and for those with disabilities and their families, there are far too few options to ensure their health and safety in this attack. Their rights must be honored in the crisis response, in immigration policy and procedures, and in the days and weeks ahead as this nation fights for its future,” said Peter Berns, CEO, The Arc.

The Arc has a longstanding commitment to the human and civil rights of people with intellectual and developmental disabilities (IDD). Given that all people with IDD are complex human beings with varying attributes and living circumstances, and many experience multiple risk factors for human and civil rights violations, we emphasize that all are entitled to human and civil rights regardless of age, gender, race/ethnicity, sexual orientation, cultural, linguistic, geographic, and spiritual diversity, economic status, severity of disability, intensity of needed supports, or other factors that expose them to increased risk of rights violations.

These rights include the rights to autonomy, dignity, family, justice, life, liberty, equality, self-determination, community participation, property, health, well-being, access to voting, and equality of opportunity and others recognized by law or international declarations, conventions, or standards. All people with IDD must have the right to supports they need to exercise and ensure their human and civil rights. Local, state, federal, and international governments must strongly enforce all human and civil rights.

With your support, The Arc is responding to the crisis in Europe caused by the Russian invasion of Ukraine. Give today, and The Arc will grant 100% of the resources to organizations supporting people with intellectual and developmental disabilities on the ground in Europe who were affected by the war.

The invasion of Ukraine also reminds us that we, as a society, need to increase our awareness of the unrest and conflict tearing apart lives in many countries across the globe. While much of the media and our attention is focused on the people of Ukraine right now, let us also remember the vast numbers of lives lost and threatened daily on an international scale. In all of these regions, we support the human and civil rights of people with disabilities and call for careful consideration of their safety and access to escape war and violence.

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

The Arc Announces Grant from The Coca-Cola Foundation to Support the Dissemination of Special Education Resources to Ensure Equality for All Families

March 14, 2022/in Advocacy, News, Press Releases, Programs and Supports/by The Arc

WASHINGTON – Students with disabilities and their families are experiencing yet another disrupted school year, as the COVID-19 pandemic continues to confront educators and families and creates new challenges in almost every aspect of education. The pandemic underscores the long history of disparities in education for students with disabilities and their families and the need for overdue improvements to the system.

Today, The Arc is pleased to announce that we have been awarded a grant from The Coca-Cola Foundation to expand our support of students with intellectual and developmental disabilities (IDD) and their families. It is a critical time to ensure that students and families are informed and equipped to advocate for what they need to achieve. The funding will allow The Arc@School to broadly disseminate information about special education to 350,000 people – leveraging our new Spanish-language resources to reach Spanish-speaking communities that have been historically underserved and provide information to assist parents to better understand and more confidently navigate the complicated special education system.

“We are excited to receive support once again from The Coca-Cola Foundation. It will allow us to help students with intellectual and developmental disabilities and families feel empowered to gain the benefits of public education in the least restrictive setting possible, as mandated by federal and state law,” said Peter Berns, Chief Executive Officer of The Arc of the United Sates. “Throughout the pandemic, time and time again, families have had to fight for their right to be included in school in a manner that is equitable and set up for success. Equal access to education is a long-standing priority of The Arc and we will keep pushing for better for as long as it takes. We thank The Coca-Cola Foundation for staying committed to education for people with disabilities and for their generous support.”

The Arc@School is The Arc’s National Center on Special Education Advocacy. The Arc@School supports students with IDD (and other disabilities) and their families to successfully navigate the special education system and get the supports and services they need to thrive in school. The program also supports educators to better understand and fulfill their responsibilities toward students and families in the special education system.

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 Coca-Cola Foundation

Established in 1984, The Coca-Cola Foundation has invested more than $1.2 billion globally to protect the environment, empower women to thrive and to enhance the overall well-being of people and communities.

The backs of two young children with backpacks on. Their heads are out of the frame, and they are standing facing stairs.

Federal Appeals Court Decision Ensures Iowa Schools Can Require Masking to Protect Students with Disabilities

January 25, 2022/in Advocacy, Grassroots, News, Press Releases/by The Arc

DES MOINES, Iowa — The U.S. Court of Appeals for the Eighth Circuit today ruled that the Americans with Disabilities Act and the Rehabilitation Act require schools to impose universal masking rules where necessary to ensure students with disabilities have access to public school education.

The decision comes in a case brought by the American Civil Liberties Union, the ACLU of Iowa, Disability Rights Iowa, The Arc of the United States, Arnold & Porter, and Duff Law Firm, P.L.C. on behalf of The Arc of Iowa and 11 parents of children with disabilities. The Eighth Circuit held that the clients are entitled to a preliminary injunction to ensure that the defendant school districts in Iowa are providing for universal masking as a reasonable accommodation so that students with disabilities can go to school safely.

“The Eighth Circuit affirmed what we’ve known to be true from the start: School mask mandate bans are discriminatory and illegal,” said Susan Mizner, Director of the ACLU’s Disability Rights Program. “To be able to attend schools safely, many students with disabilities need their schools to require masks. At a time when COVID-19 is ravaging our communities once again, this decision ensures that schools can continue to take basic public health precautions like requiring universal masking to protect their students.”

A federal district court in September enjoined the state from barring mask mandates, recognizing that “forcing children to bear the brunt of societal discord is ‘illogical and unjust.’” The state then appealed that decision, resulting in today’s ruling.

“Today’s decision is an important victory for the civil rights of children with disabilities in Iowa, who have a right to go to school with their peers,” said Rita Bettis Austen, Legal Director of the ACLU of Iowa. “No parent should have to choose between their child’s health and safety and their education, but that is the terrible position that the state put our clients in. It’s important to note that the court’s reasoning also means that even schools that are not named in the lawsuit should be requiring masks when needed to accommodate students with disabilities so they can go to school with their peers. This decision is a huge relief to families across our state.”

The groups are arguing in the lawsuit that federal civil rights laws require schools to be able to require universal masking to give students with disabilities an equal opportunity to benefit from their public education.

The following are additional comments from:

Shira Wakschlag, Senior Director, Legal Advocacy and General Counsel at The Arc of the United States:

“In the midst of yet another COVID-19 surge, the court is making it clear that students with disabilities have the right to go to school safely during this pandemic. The Arc will continue fighting to ensure that students with disabilities in Iowa and nationwide are able to attend their neighborhood schools alongside their peers without putting their health and their lives at risk.”

Catherine E. Johnson, Executive Director of Disability Rights Iowa:

“I welcome today’s ruling that universal masking as an accommodation is both reasonable and necessary for students with disabilities to attend school in-person safely during the ongoing pandemic. This ruling comes during a time when Iowa is experiencing a surge of COVID-19 cases throughout the state. We are hopeful this opinion provides relief, confidence and clarity for parents, students, and schools to work collaboratively to restore our students’ long established civil rights under federal law and safely return our students with disabilities to their schools.”

The Arc promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes.

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