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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.”

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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.

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

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!

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.

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

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.

A photo collage using 6 polaroid-looking frames with various people in them.

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 United States Capitol Building

The Arc Speaking Truth in Washington

Testifying Before Congress on Bridging Health Equity Gaps for People with Disabilities and Chronic Conditions

Today, as we approach year three of the COVID-19 crisis, The Arc testified before the Committee on Ways and Means, Subcommittee on Health, in the U.S. House of Representatives.

Bethany Lilly, The Arc’s Senior Director of Income Policy, represented people with intellectual and developmental disabilities, their families and friends, and the essential frontline disability service providers who support them; all of whom have directly experienced the barriers that people with disabilities face in accessing health care.

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

My name is Bethany Lilly and I am the Senior Director of Income Policy at The Arc of the United States. I am here today representing people with intellectual and developmental disabilities, their families and friends, and the essential frontline disability service providers who support them.

As a person with a disability, I want to acknowledge exactly how devastating the past two years of pandemic have been to my community. Millions of people with disabilities and our loved ones have lost their lives or faced two years of isolation and lockdown to protect ourselves. The frontline health care workers serving people with disabilities have faced the same risks and we mourn those we have lost, like Angie Reaves of Virginia.

My written testimony goes into detail about the common challenges and barriers that people with disabilities have accessing health care, the impact the pandemic has had on all of this, and how we can move forward to build a more equitable system. But to provide some highlights:

All people with disabilities need health insurance, but we currently have a very haphazard system of multiple private and public options that leaves many gaps: Medicaid, Medicare, the VA, the Indian Health service, employer-sponsored coverage, and Affordable Care Act to name a few. These gaps in access are concerning for everyone, but even more so for people with disabilities who often rely on health care to maintain their existing level of functioning and lives. In particular, the two-year waiting period for access to Medicare for Social Security Disability Insurance beneficiaries leaves people with very work-limiting disabilities without affordable health care. This is why we strongly support Chairman Doggett’s Stop The Wait Act. We also support efforts to close the Medicaid expansion coverage gap and improve the affordability of ACA subsidies.

Availability of particular services is also crucially important for people with disabilities. Many people with disabilities rely on home and community-based services (HCBS) not only to keep themselves healthy but to allow them to fully participate in their communities. Approximately 23% of all COVID deaths occurred in congregate settings that are the alternative to HCBS. So it is no surprise that both people with disabilities and older adults prefer those community settings. And this is why over 800,000 people across the United States are on waiting lists for HCBS. We desperately need comprehensive investment in HCBS so that people with disabilities can access the services they need. I know many Members of this Committee have co-sponsored the Better Care Better Jobs Act and I thank you all for supporting that investment in people with disabilities.

But access to HCBS isn’t enough–people with disabilities also need other comprehensive services. We need an out-of-pocket cap in Medicare Part D so beneficiaries aren’t on the hook for thousands of dollars in out-of-pocket costs for life-saving medication. Medicare needs to cover all basic health care services, including comprehensive dental, vision, and hearing benefits in Part B so that people with disabilities have access to these services.

And the health care system as a whole must acknowledge and treat people with disabilities as real people. During the past two years, our network had to repeatedly bring lawsuits or file complaints with HHS about crisis standards of care and hospital visitor policies discriminating against people with disabilities and their families. Unfortunately, this kind of discrimination is not new. Research makes it clear that many in the medical profession do not see people with disabilities having the same quality of life as people without disabilities and the health care systems reflect this.

The deep-seated bias against people with disabilities is all the more concerning knowing that COVID is a mass-disabling event. I know members of this Committee have done some work to address the needs of people experiencing Long COVID and other post-viral conditions like my fellow witness and I hope we see those investments soon. It is also crucial that we have data on people with disabilities, experiencing COVID and otherwise, that is collected with full stratification of reporting by key demographic groups.

Finally, about two other things on which the Committee has focused legislatively. First, I hope that investments the Committee has proposed to invest in medical students with disabilities are enacted soon–this is an effective way to begin to reverse bias and push back on the misconceptions about people with disabilities within the health care system. And second, I hope that we see action soon on telehealth–recent Data for Progress polling shows that 80% of all likely voters want the telehealth flexibilities created during the pandemic extended and many people with disabilities do too! We just need to ensure these options are available and accessible to all people with disabilities, just like they need to be for those in rural areas as well!

And that’s an important point about ensuring people with disabilities are included: If a policy works for people with disabilities, it will work for everyone. Working on solutions is how people with disabilities and organizations representing people with disabilities have responded to the pandemic–we have come together and explained our needs and asked to be included in the development of responsive policy.

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Disability Rights Advocates to Meet With CDC Director Following GMA Appearance; Nearly 150 Disability Organizations Release Policy Demand Letter Ahead of Meeting

Washington, D.C. – On Friday, January 7, CDC Director Dr. Rochelle Walensky, in an interview with Good Morning America, commented on the results of a research study. Director Walensky remarked that a disproportionate number of deaths due to COVID-19 in the study population occurred among those with four or more comorbidities, calling those patients “people who were unwell to begin with” and these results as “encouraging news”. The disability community, who represent those with four or more comorbidities who died in the study, responded in turn. The hashtag #MyDisabledLifeIsWorthy, started by writer and activist Imani Barbarin, was a top trend on Twitter over the weekend. 

As a result of the controversy, representatives from numerous disability organizations requested a meeting with the CDC Director. Tomorrow, Friday, January 14, several will meet with CDC Director Rochelle Walensky to express their frustration with both the comment and how the CDC’s pandemic response has harmed and often left out the disability community. The following organizations and individual advocates will be represented: The American Association of People with Disabilities (AAPD), The Arc of the United States, The Autistic Self Advocacy Network (ASAN), Be A Hero, The Disability Justice Initiative at the Center for American Progress, Disability Rights Education & Defense Fund (DREDF), Little Lobbyists, and Matthew Cortland, Senior Fellow, Data for Progress. 

Ahead of the meeting, advocates sent a letter to the CDC Director from nearly 150  disability-focused organizations from around the country, representing tens of millions of disabled Americans from every state and territory. The letter, which can be read in full here, reads: 

“The disability community’s faith in the government agencies responding to the pandemic has taken hit after hit with repeated policy choices that devalue disabled lives. For every step in the right direction, there have been steps backwards or actions delayed. It is necessary for the public health of our nation that the CDC and other agencies responding to the pandemic take immediate, concrete policy steps to rebuild that trust, protect disabled and high-risk people, and enact an equitable vision of pandemic recovery that centers on those communities most at risk and begins to shift long-standing systemic inequities.” 

To rebuild the disability community’s trust in the CDC, the letter details several important policy demands and outlines three key requests:  

1) Commit to regular ongoing meetings and consultation with disability stakeholders and CDC Leadership; 

2) Base isolation guidance in public health evidence and data with an understanding of the impacts on those most at risk; and 

3) Center people with disabilities–and other communities disproportionately impacted by COVID-19–by ensuring that all CDC COVID-19 guidance is inclusive of the needs of people with disabilities. 

Finally, the groups are requesting a public apology from Director Walensky to disabled, immunocompromised, and high-risk Americans, as well as an affirmation of the CDC’s commitment to ensuring their pandemic response sufficiently centers the needs of these communities. More than 30 million Americans live with 5 or more chronic conditions, according to the Rand Corporation

The representatives in this meeting take extremely seriously their responsibility to people with disabilities, who are feeling scared and forgotten as the United States enters its third year of the COVID-19 pandemic. Accordingly, written statements from the organizations will be shared following tomorrow’s meeting. A press call will also take place at 4:30pm ET, on Friday, January 14, roughly one hour after the meeting. If you are a member of the media and would like to register for the call, please email Jess Davidson, AAPD Communications Director, at jdavidson@aapd.com

Families Like Debbi, Josh, and Victor Need Your Support.

The Arc has been advocating for decades to help family caregivers—advocating for health insurance, for paid family and medical leave, and respite services and other family supports. And this advocacy has taken on even more urgency during the COVID-19 pandemic.

Families like Debbi, her husband Victor, and their son Josh need our support more than ever.

“Josh was born about eight weeks early with a grade four brain hemorrhage, so he was one of the sickest babies in the neonatal intensive care unit. It started our roller coaster of a journey of having a child with complex medical needs and disabilities.”

Debbi and Victor struggled to hold onto their jobs while managing Josh’s complex medical needs and raising their two other children. Victor was often called away for active duty with the military. Debbi often worked during the night to meet her deadlines and hold onto the health insurance they depended on to pay for Josh’s medical care.

“And that insurance, it was always in the back of my mind, was what was keeping Josh alive.”

The challenges of balancing work and family caregiving responsibilities began to mount. Debbi struggled to get approved for unpaid leave and as Josh’s care needs increased, Debbi had to reduce her working hours substantially. This was a financial burden for the entire family and increased her worry about losing her job altogether.

Reflecting on that time, Debbi explains:

“It was a very difficult time emotionally, physically, and also financially. If I had been able to get paid leave, our struggles would have been so much less critical.”

Like Debbi, most Americans cannot take extended unpaid time away from work to care for a family member. Nor are they able to wait on years-long waiting lists for supports and services that may never come.

That’s why The Arc is working to make a national paid family leave program a reality for ALL who need it.

That’s why we’re advocating for home and community-based services to be available when they’re needed most.

Family caregivers, and their loved ones with intellectual and developmental disabilities, experience challenges in their daily lives that you and I never even have to think about. The Arc must be there alongside them. But we can’t do it without you.

You can help overwhelmed families navigate the complex developmental disabilities services systems for infants, children, and adults with IDD by giving to The Arc.

Can we count on you to stand with family caregivers by supporting The Arc today?

Join us and make a difference. Donate to support our critical advocacy today and sign up for updates to advocate with us when it matters most.

Your gift will be matched!

 

A young man sits smiling on a white couch with white blinds in the background. He is wearing a black shirt with the yellow word "ARMY" on it.

Disability Is Not a Crime. Support Our Fight for Justice.

Too often, disability is criminalized due to a lack of understanding—by both the public and first responders. Disability-related behaviors can be perceived as threatening or suspicious, and it’s estimated that one third to half of all people in the U.S. killed by police have a disability. The Arc is working hard to protect the rights of people with disabilities to exist safely in their communities—people like Neli Latson.

In 2010, Neli Latson was an 18-year-old special education student with autism who was sitting on a bench outside his neighborhood library waiting for it to open. Someone called the police reporting a “suspicious” Black male, possibly with a gun. Neli had committed no crime and was not armed, but being a young Black male with autism,  he would soon experience the tragic results of a system stacked against him.

When approached by a deputy, who quickly found that he was unarmed, Neli tried to walk away but was grabbed by the deputy several times. He reacted with a fight-or-flight response, a common instinct for people with autism.—resulting in an altercation. Neli was arrested and charged with resisting arrest and assaulting the officer.

What should have been an innocent chance encounter with the police spiraled out of control and marked the beginning of years of horrific abuse in the criminal legal system. Prosecutors refused to consider the role Neli’s disability played in his reaction to the police officer, dismissing it as a diagnosis of convenience. They refused to understand that he needed developmental disability services, rather than incarceration. Instead, Neli was convicted and sentenced to 10 years in prison, where he was 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.

As Neli languished in prison, The Arc joined forces with Neli’s attorneys and a coalition of advocacy and racial justice organizations to demand justice. In 2015, we won a conditional pardon for Neli. But he was forced to live in a court-supervised residential setting, where he was treated harshly by staff who lacked understanding of autism. He lived in fear that he could be sent back to jail at any time.

The Arc and the coalition never gave up the fight.

In 2021, Neli was finally granted a full, unconditional pardon and provided with the disability support services he should have received in the first place. Neli is on his way to living a full—and free—life.

But our work is not done. The sad reality is that people with intellectual and developmental disabilities and their families are too often forgotten and left behind in our society. Many like Neli are denied justice, and frequently hurt, due to the unjust biases of people who simply fail to recognize and respect their humanity.

For more than 70 years, The Arc has worked to change that as the only nationwide advocacy and social services nonprofit that works solely on behalf of people with intellectual and developmental disabilities. We work across the criminal legal system to support victims, suspects/defendants, and incarcerated persons with disabilities to receive the accommodations they need and are entitled to while navigating the system.

Can we count on you to stand with them today?

Join us and make a difference. Donate to support our critical advocacy today and sign up for updates to advocate with us when it matters most.

Your gift will be matched!

 

A woman in a motorized chair plays with a small dog on a grassy field in front of a community of houses

New Budget Framework Provides Historic Investment in the Disability Services System

Today, President Biden announced the Build Back Better budget framework that would make significant investments in our nation, people with disabilities, their families, and the direct support workforce. This new deal includes $150 billion for Medicaid home and community-based services, or HCBS, which provide the support people with disabilities need to be a part of their community, and better pay for the workers that support them.

For years, the service system that people with intellectual and development disabilities (IDD) and their families rely on, Medicaid, has needed an investment. People are stuck on waiting lists for HCBS, the direct care workforce is underpaid, and too often, unpaid family caregivers are filling in the gaps.

“This proposal is a huge down payment on investing in the futures of people with disabilities and their families. It will expand access to services for people with disabilities on waiting lists and start addressing the direct care workforce crisis, including raising wages and creating more jobs. Without a robust and well paid workforce, the promise of services in the community falls apart – so it was urgent that the direct support workforce be bolstered in this deal,” said Peter Berns, CEO, The Arc.

While the investment in HCBS is major, and includes long fought for funding, even with the most robust investment in these services, families still need paid leave. The Arc has long advocated for a national paid leave program for family caregivers. The pandemic forced millions of people to choose between their own health, the health of their families, and their livelihood. As the BBB package moves forward, The Arc urges Congress to include paid leave as the package moves through the House and Senate.

“We have always known because of the many stories from our network, but the pandemic highlighted for everyone how crucial paid leave is for people with disabilities and their families. Leaving out paid leave is unacceptable, and Congress should include paid leave in this package,” said Berns.

The Arc is also pleased that the framework includes:

  • The extension of improvement to the Child Tax Credit for one year and permanent expansion of the credit to the lowest income families;
  • The expanded Affordable Care Act premium tax credits through 2025; and
  • The extension of improvements to the Earned Income Tax Credit for low-wage workers with disabilities.

“We urge Congress to act quickly on this plan, add more funding for HCBS as negotiations continue, and fulfill the promise on paid leave. Change can’t come soon enough for millions of people with disabilities and their families,” said Berns.