Archive for category: Advocacy

A photo of Ken Oakes wearing a suit with a flower in the lapel. He is outside at an event, speaking into a microphone.

Spotlighting The Arc’s Changemakers: Kenneth Oakes, Immediate Past President

April 3, 2024/in Advocacy, From Our Chapters, Grassroots/by The Arc

A childhood friendship sparked Ken Oakes’ lifelong dedication to the disability community. His mom’s cousin Louise had Down syndrome and was only 10 years older than him, making her part of Ken’s inner circle growing up. This early exposure ignited a drive to serve, though he didn’t know where it would lead him yet. Ken always wanted to teach, but had his sights set on high school social studies. A college observation requirement opened the doors to teaching children with disabilities. Though hesitant at first, as Ken shares, “I fell in love with it.” That summer, he applied to teach at a summer school for students with intellectual and developmental disabilities (IDD), the G.A. Barber Center run by The Arc of Erie County. For the next 47 years, he devoted his career to special education and as an advocate for children and adults with disabilities and their families.

The Arc has continued to shape Ken’s career and volunteer work since 1976. He spent college summers working at the Barber Center and volunteering with The Arc of Erie County, becoming President of the Erie Youth Arc. Every summer, he and his fellow Youth Arc volunteers from across the state would go to a state-run institution for people with IDD. They would spend the weekend there to paint rooms and “brighten up their world.” While in college, Ken was working part-time in the group homes operated by the G.A. Barber Center. He helped former residents transition to life outside of the institution that they had spent decades confined within. Ken explains, “My whole family got involved. I brought folks to my parents for dinner—and even the holidays if they didn’t have family to spend it with. I just wanted a better life for them.”

After college, Ken went on to spend four decades as a teacher, a program consultant, and an administrator. As Ken says, “special education was my world.” But he will never forget his first day. His students, 7 of whom were full-time wheelchair users and 3 of whom had IDD, arrived 45 minutes later than everyone else and spent their whole day in one classroom. “They didn’t get art, they didn’t get physical education, they didn’t go to the library,” explains Ken. “Because of The Arc, I knew that was wrong. We started eating lunch at a separate table in the cafeteria and going to the gym and library by ourselves. After a couple of weeks, I told my principal that I’d like my students to go to general education classes. By the end of the first quarter, all my kids were in some general education classes, which helped them make friends outside of our classroom. Soon, my kids were having lunch with their new friends, not at a separate table in the cafeteria or in our classroom.” He beams with pride as he remembers Amy, a second grader who had Cerebral Palsy. Her parents were skeptical of her being included in general education. He ran into Amy at the mall four years ago, and, as Ken adds, “she went to college, got married, and is now a social worker. To know she’s achieved so much, I like to think I was part of inspiring her and changing her mother’s mind about what’s possible.”

His impact on students didn’t stop in the classroom. After his career as a teacher, he went on to become the Special Education Director in Philadelphia and now teaches graduate school, supervises teachers, and was just appointed by the Governor to serve on Pennsylvania’s Special Education Advisory Panel. He also continued to volunteer with The Arc. “I think I did everything possible with The Arc.” In 2005, The Arc of Pennsylvania asked Ken to represent The Arc on the state’s Right to Education Task Force, which later led to his joining the Boards of The Arc of Philadelphia and The Arc of Pennsylvania, where he served as president of both organizations. He learned more and more about The Arc of the United States and was eager to get involved. He went to National Conventions, joined Committees, and eventually joined the national Board. “I went from organizing days at the zoo to becoming the national President—I was flabbergasted,” shares Ken.

His proudest moments aren’t in serving as President of his local chapters or the national organization. Ken explains, “Because of The Arc, all kids go to public school now and in my state, nobody lives in an institution anymore. To know I had a tiny bit to do with that is what I’m most proud of. I’ve met thousands of teachers, kids, and parents over the years, and I like to think I made life just a little better for them.”

When asked what continues to drive his involvement, Ken emphasizes, “There’s still so much work to be done.” Though life in 2024 is exponentially better for people with IDD than it was five decades ago, issues of isolation and underemployment persist today. He hopes to expand understanding and acceptance of people with IDD in our society. He says, “Be good to them because they’re good neighbors, good students, good friends to your kids, and may make a difference when they grow up.”

Ken is eager to continue contributing however he can, whether serving on a Board committee or consulting state leaders on teacher shortages. As Ken adds, “I want people to understand that The Arc has been here from the beginning and will be here for the future. We’re never going to stop making life better, one day at a time. The national office and local chapters are driven by families and self-advocates, and you can always count on The Arc.”

As for Louise, her parents kept her sheltered at home well into her adulthood. They passed away when she was in her 40s, and Louise was placed in a group home run by the G.A. Barber Center. She hated it at first. “When she first got there, she ran away twice,” describes Ken. “But little by little, she came to love it. Louise blossomed in the community, and those years were her best. What makes that so special to me is that The Arc made that happen for her, and has done that for hundreds of thousands of people.”

Tonya’s Struggle to Find Child Care for Her Daughter

March 21, 2024/in Advocacy/by The Arc

Around the country, families are struggling to find and afford child care, and child care centers are struggling to keep their doors open. Half the country lives in child care deserts, where the number of kids under age five far exceeds the child care slots available.

Families of children with disabilities face even greater challenges to finding care due to inaccessible child care centers.

Recently, Tonya from Texas shared the challenges her family has faced with finding child care for her daughter, who has Down syndrome.

“In November 2022, we enrolled our daughter, who was six years old at the time, to receive after school care at a child care center that was being built in our neighborhood. My daughter needs constant supervision and is not potty trained. We’ve been turned down from multiple centers in the past, so we were excited and also worried about any issues that may come up.”

Tonya exchanged several emails and phone calls with the center director. She was assured the center would be able to provide care for her daughter and felt they had done a great job in addressing all of her concerns.

But the week her daughter started, Tonya was called to the center three times. She was asked to pick her child up because she had eloped. Elopement, or wandering away from a safe area or trusted person, is a behavior exhibited by some children with autism, Down syndrome, intellectual disability, anxiety, and ADHD.

“After the third call, I was informed that the center didn’t have adequate staff to provide constant supervision for my daughter. I was also told she was hitting other kids and would not be permitted to return… In the end, this ray of hope was a right disaster. Where, exactly, can I send her then? Right now, her dad and I do our best to keep an eye on her while we finish our workdays. And with many high school students wanting $15–20 an hour for babysitting, we can’t afford a regular babysitter.”

“Finding child care should not be this hard. It’s exhausting and disheartening, and it’s demeaning to our daughter.”

Join us and tell Congress to make child care for children with disabilities a priority today.

A hand holds a small wooden blue house with a heart shape cut out of it.

Providers Who Care for People With Disabilities Deserve a Raise

February 15, 2024/in Advocacy, Programs and Supports/by The Arc

This letter was originally published in the Syracuse Post-Standard. It has been adapted with permission from its author Barbara Davis, a member of The Arc’s National Sibling Council.

I am the sister and legal guardian of a sibling with an intellectual or developmental disability (IDD). She resides in Onondaga County in New York and receives services from The Arc of Onondaga. I live in Virginia and have been her long-distance advocate and guardian for the past 20 years, since our parents passed away. I would like to share with you the support and care my family has been fortunate to receive from The Arc throughout my sister’s lifetime.

Our family pediatrician referred my parents to The Arc shortly after my sister was born in 1954, and I can’t imagine what her life (or ours) would have been like without the essential services The Arc provides.

From childhood well into adulthood, she attended The Arc’s Day Habilitation program, where she learned daily living and social skills, made friends, and enjoyed group activities. She bonded not only with other participants but also with dedicated staff, who encouraged her and supported her with respect and patience. To this day, a retired day habilitation staff member remains in touch and meets up with my sister and me when I am in town.

My sister lived at home with my parents until my father passed away and my mother was diagnosed with cancer. The Arc then assisted us in finding a residential placement. Before she died, my mother found great peace of mind knowing my sister would be living in a safe and supportive environment.

For the past 20 years, my sister has lived in a group home where she receives total care from direct support professionals. They provide meals, assist with such basic daily tasks as bathing and dressing, and provide transportation to doctor’s appointments. She also receives occupational therapy and physical therapy from The Arc. And the staff supports me by keeping me informed, helping me connect with my sister several times a week on FaceTime, and facilitating my in-person visits.

I cannot say enough about the dedication and hard work of the direct support professionals who have made such a difference in my sister’s life. At no time was this more apparent than during the COVID pandemic. When residents at my sister’s group home all came down with COVID, staff continued to show up every day to support and nurture the residents. Due to their wonderful care, all the residents recovered.

Without services and support from The Arc, my sister would have had a far more isolated life and fewer opportunities to develop her full potential. Instead, she is happy and sociable and “living her best life.” She loves her home and family at The Arc.

How To Help

Currently, chapters of The Arc and other nonprofit organizations that support people with IDD nationwide are experiencing a funding crisis. The amount that Medicaid reimburses these groups to pay dedicated direct support professionals is too low and not a livable wage. We need members of Congress, state legislatures, and governors to invest more resources in the essential services provided by The Arc and other nonprofits that support people with IDD and their families.

You can help by sending letters to your members of Congress and supporting your state chapter’s advocacy efforts.

Why Black Disabled History Matters

February 5, 2024/in Advocacy/by The Arc

The following blog post was originally published by the World Institute on Disability (WID) and is reposted here with permission.

Written by: Dikko Yusuf, a disabled freelance writer

Black disabled history is an aspect of Black history, which informs world history. Black History Month is officially celebrated every year in the U.S., Canada, Ireland, and the UK. During this month, we celebrate the achievements of Black leaders throughout history and while many of these leaders also had a disability, that aspect is often minimized or overlooked. Black disabled people are multiply-marginalized, and more prominent awareness of the accomplishments of Black leaders, who are often also disabled, can help drive and inform systems change for the current and future generations of disabled people around the world.

Black Disabled Leaders in History

Disability has often been erased from the stories of many Black historical figures. Disabled activists Vilissa Thompson, Heather Watkins, and Ola Ojewumi all highlight how their exposure to Black history in school failed to account for the disabilities of Black civil rights leaders.

Abolitionist Harriet Tubman and pianist and composer Thomas Wiggins are good examples to consider here. Tubman had epileptic seizures since she was 12, and is remembered for leading enslaved Black people through underground passageways to freedom. Wiggins was born blind and is celebrated for being the first Black person to perform at the White House.

A historical account that recognizes Tubman’s disability is more likely to examine how her disability influenced how or when she did certain things. When we recognize Wiggins’ disability, his story becomes more than a musician’s biography; it becomes the history of disabled musicians. Without an acknowledgment of their disabilities, their stories are incomplete.

Throughout history, many other Black disabled people helped to secure rights and representation for people with disabilities.

Fannie Lou Hamer was a leader in the Civil Rights Movement and the vice-chair of the Freedom Democratic Party. Johnnie Lacy helped found the Berkeley Center for Independent Living in 1981. She also served on Hayward’s Commission on Personnel and Affirmative Action, and the Mayor’s Disability Council for the city and county of San Francisco. Both Lacy and Hamer had polio and made an indelible mark for Black women and disabled people’s rights in the U.S.

Brad Lomax was yet another Black disabled leader who made history. Lomax was a member of the Black Panther Party and had multiple sclerosis and used a wheelchair. In 1977, he participated in the historic 504 Sit-ins at the San Francisco Federal Building and encouraged the Black Panthers to provide meals and other supplies to the protestors. The 504 Sit-ins achieved its objective on April 28, 1977, when the secretary of the Department of Health, Education and Welfare (HEW), Joseph A. Califano Jr., signed the regulations to implement Section 504 of the Rehabilitation Act of 1973.

Joyce Jackson, who contracted arthritis at the age of 12, was also a civil rights activist. She was among 20 other activists that went to Washington D.C. to make a case to officials in the Carter administration for the implementation of Section 504 By the HEW.

Audre Lorde was a Black lesbian writer with breast cancer and civil and disability rights activist. Her powerful and evocative poetry broadly drew from her identity which included the intersections of racism, sexism, classism, ableism, and homophobia.

Lois Curtis was a disability rights advocate who grew up with cognitive and developmental disabilities and spent nearly 20 years in institutions, at different points in her life. The landmark Supreme Court ruling on her case, Olmstead v. L.C., that institutionalizing people with disabilities was discriminatory, was a monumental and watershed moment in the Independent Living Movement.

Black disabled leaders such as Fannie Lou Hamer, Brad Lomax, Joyce Jackson, Audre Lorde, Lois Curtis, Johnnie Lacy and many more championed civil rights and fought hard against ableism and racism. Black disabled history adds a comprehensive component to the way we interpret historical figures and events. It gives us a richer and clearer perspective on important moments today and throughout history.

As Florida Governor Ron DeSantis recently blocked a Black studies course for high-achieving high schoolers and other conservative politicians push to block Black history from being taught in schools, we must make a concerted effort to make sure these stories are told. Black history acknowledges the experiences of oppression and marginalization faced by Black people and the systemic racism that Black people continue to face globally. When Black history is hidden, systemic racism continues to be denied by members of the next generation of leaders and decision-makers, and through that denial, the systems remain in place.

Black disabled history represents the experiences of multiply-marginalized individuals confronted by racism and ableism. During disasters and emergencies, for instance, Black disabled people, who often live in resource-deprived areas, experience worse outcomes in relation to white disabled people. They are also disproportionately impacted because their disability needs are not considered in disaster preparedness, response, and recovery. Apart from the oppressive racism faced by Black people, Black disabled people also have to contend with the ableism that limits their ability to access opportunities and resources. Additionally, Black disabled people face discrimination and violence through systems of policing. The limited data we have on the topic shows that more than 50% of Black disabled people will be arrested by the time they turn 28, and at least 50% of people killed by police are disabled. Many of the high-profile cases of Black people killed by police were significantly impacted by the victims’ disabilities, but very little media coverage acknowledges the impact of the combination of racism and ableism on these cases. Black people with disabilities also have to live with the fear of being further marginalized by disclosing their disabled identities.

“Black people may be hesitant to identify as disabled for fear of further discrimination based on that identity,” Ojewumi said.

This fear of discrimination also drives some Black people to hide their disabilities and code-switch or alter their language to sound less Black, around white peers. When we have Black disabled stories told in the mainstream media, we are able to create diverse and inclusive societies that recognize the experiences of a group that is often overlooked. When these stories are told, we are able to examine the intersectionality and sociopolitical ramifications of being Black and disabled.

Beyond Black History Month

Discussions about the achievements of Black disabled leaders should be held all year round, not just during Black History Month. Furthermore, it is important to not just celebrate Black disabled history, but to also work to create a society that is inclusive of Black disabled people. The disability justice framework is a great place to start. The disability justice framework recognizes the intersectionality of disabled people who belong to additional marginalized communities and is a necessary ideology to achieve the liberation of Black disabled people. When we acknowledge Black disabled history, we can create a better future for Black disabled people of today and tomorrow. Black disabled history is world history.

A family posing for a photo in a living room. One of the sons has disabilities and is in a wheelchair.

Spotlighting The Arc’s Changemakers: Debbi Harris, Vice President of the Board

January 25, 2024/in Advocacy, From the Frontlines/by The Arc

If anyone embodies the fierce, compassionate spirit of advocacy at the heart of The Arc, it’s Debbi Harris, MA, MS, the 2023 Vice President of our national Board of Directors. For over 25 years, Debbi has fought tirelessly to shape systems that fully include people with disabilities and complex medical needs, and it all starts with Josh.

Debbi’s son Josh was born eight weeks early with a grade four brain hemorrhage. As she shares, “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.”

Securing reliable home nursing supports has always been a struggle. When he was an infant, there was a constant rotation of providers coming to her door, many of whom had limited training.

“It was really scary… Josh was harmed because people were coming in who weren’t well-oriented or trained to care for him. At just 18 months old, Josh was hospitalized three times because of this.”

Debbi and her husband Victor also struggled with their careers while managing Josh’s needs and raising their two other children. Victor was often called away for active duty with the military. Debbi worked full time in a traditional office setting, often working into the night to meet her deadlines and hold onto their health insurance. “That insurance was what was providing Josh’s life-sustaining medical care. But because of the hospitalizations, I gave up my career to stay home and care for him when he was two years old.”

Out of crisis came purpose. Debbi soon immersed her family in The Arc’s chapter support systems, connecting her sons to sibling workshops and herself to a parent networking group. “We still count on those relationships for support today,” added Debbi.

Not long after, her local chapter of The Arc called on her to testify in support of the Tax Equity and Fiscal Responsibility Act (TEFRA) and better standards for care workers. Years later, when Josh was headed off to school for the first time, Debbi found herself in battle for nursing support. School officials told her that Josh couldn’t go to their school unless she paid for a nurse to accompany him during the school day. “I was so jolted by what they said, and I knew we had a big fight on our hands, so I went to The Arc and they stuck by me,” she recalled. “They looked up precedent cases, got their big-time lawyers involved… and we won.”

Debbi not only secured Josh’s rights to nursing care within the school, but her victory paved the way for other families. Now the school must notify every family whose child needs nursing care that they are entitled to support in school.

Debbi constantly found herself in circles with The Arc, including a fundraiser at the home of a family that had two daughters with disabilities. That led to leadership roles in chapters of The Arc, from serving on the Board of The Arc of Dakota County to The Arc of Minnesota and as Board Chair for The Arc of Greater Twin Cities. Debbi has been involved in so many aspects of community advocacy, including working with local and federal legislators. She’s also a published writer illuminating caregiving and equity issues in medical journals.

Debbi’s exceptional contributions earned her the prestigious Betty Hubbard Family Advocacy Award from The Arc of Minnesota in 2013. Her family got to witness her receiving the award. “It meant a lot that they were able to be proud of me in that way,” Debbi shares.

Once The Arc of the United States got word of Debbi’s powerhouse advocacy, we invited her to apply for the Board. Her proudest volunteer moments have been spearheading the creation of The Arc’s anti-racism position statement and filming a campaign for paid leave in her home. For Debbi, The Arc provides community, kinship, and collective power to drive social change. She points to our strong advocacy at the heart of improving quality-of-life for people with intellectual and developmental disabilities (IDD). And, as she adds, our work is “authentic, grassroots, and rooted in the lived experiences of people with disabilities. We see dignity in all people and we’re willing to make sure that everyone sees that dignity.”

For over 25 years, Debbi’s been on a mission to teach parents how to effectively advocate for their children and to shine a spotlight on the marginalization of people with IDD and the caregiving crisis, and that mission continues today. Debbi is eager to continue leveraging her passion, wisdom, and connections to uplift the disability community nationwide. Her relentless drive reminds us that within all of us lies the power to champion inclusive communities.

DSP Spotlight: Lawrence Discusses Hardship Imposed on Direct Care Workforce

January 9, 2024/in Advocacy, From the Frontlines/by The Arc

Working with people with disabilities is Lawrence’s long-time passion. He has worked as a direct support professional (DSP) in New York and Texas, both before and after serving in the Army. As a DSP, Lawrence takes pride in the trusted role he has in the lives of people with disabilities. He helps transport people to and from appointments, gives medicine, cooks, cleans, dresses, changes, and feeds people who may not be able to do these things for themselves. He even seeks out specialized training that is needed to support people who have challenging behaviors that may result in injury to themselves and others.

For years, the DSP field has been undervalued and underfunded. For Lawrence, this comes from a lack of recognition and social awareness.

“It is important for people to recognize the skills, training, and importance of our profession and how comparable it is to jobs with similar requirements,” says Lawrence. “I have performed in nursing and emergency services roles; I can say these skills easily translate to direct support professionals. However, these other professions receive not only more public credit but also a substantially larger salary… I have served in this profession for 18 years and don’t have the heart to leave. But right now, I am only earning just over minimum wage and having to work 60 hours a week.”

Dedicated direct support professionals do their best every day to care for people with disabilities and seniors. However, due to poor pay, it is hard for many DSPs to support themselves and their families on this below-average wage.

Recently, the crisis impacted a family that Lawrence works with. When the mother could no longer physically care for her teenage son, Lawrence stepped up. In Texas, it can take 6 years, on average, to get Medicaid home and community-based services. During this time, many people with disabilities end up in institutions, like nursing homes, because they can’t get the support they need to live at home. To prevent this from happening, Lawrence offered to house the teenager and care for him in his own home, at his own expense. “I support him out of the very wages I am paid by Medicaid for my work. It is my choice, but I shouldn’t have to do this for the young man to get the help he needs,” says Lawrence.

Being a direct support professional requires many critical skills but is often easily overlooked by those making decisions about Medicaid funding. As a result of this oversight, there are not enough DSPs to help all the people who need care. The low pay scale often means that people are not able to gain proper training or stay long enough in a DSP role to learn all the skills needed for the position.

“It is my prayer that our government works diligently to support the people with disabilities in our communities and their families. It is desperately important that the processes for funding, equipment, placement, and care be streamlined and that we recognize the value and appropriately pay those who work with people in need. It is through this that we will drastically improve the quality of care and quality of life of those with disabilities.”

Spotlighting The Arc’s Changemakers: Laura Kennedy, President of the Board of Directors

December 15, 2023/in Advocacy, From the Frontlines/by The Arc

When Julia Kennedy was born in 1982, The Arc had already been laying the groundwork for her to thrive.

Laura and Hal Kennedy were parents to two daughters, ages 3 and 4, when Julia arrived. Early on in her infancy, they knew that Julia was experiencing developmental delays. She eventually was diagnosed with profound intellectual disability and autism. Working with their pediatrician, the Kennedys sought out the help they would need to support Julia at every step, and they found their local chapter of The Arc, AHRC New York City.

Julia started attending a pre-school run by United Cerebral Palsy, where they received a flyer for a family event hosted by AHRC New York City. The whole family spent a Saturday afternoon connecting with other parents, siblings, and children with disabilities.

Laura shared: “It was like walking into the extended family that we all needed. It was the beginning of our now 40-year relationship with this incredible community of people.”

As Julia grew, and the Kennedys welcomed a fourth daughter, they began relying on The Arc for help with Julia’s schooling.

“I was learning about Julia’s rights and what environment could help her thrive. The team at AHRC New York City assured me that there was a continuum of services, and at the top, The Arc’s national office had gurus in special education policy fighting for systemic change. And before Julia was born, they had paved the way,” said Laura.

She added: “Very little existed 10 years before Julia arrived on the scene. I think that’s one of the most important things for people to keep in mind—The Arc’s national advocacy impacts people who are young and old, those who are not even born yet.”

The Kennedys were struggling to balance their four busy daughters’ needs. AHRC New York City helped them through respite care. Julia was very uncomfortable traveling, and so as the family took short trips, they gradually learned to trust other caregivers. Julia had invaluable experiences at overnight camp and staying at a respite home for a night or weekend, and Laura and Hal learned how to balance the risk and the opportunity.

“We needed that support to give time and attention to each child. And Julia needed to have different experiences in her life to grow. Between AHRC New York City’s programs, the wonderful staff we’ve worked with over the years, and the families we met through the chapter, we all benefited,” said Laura.

Soon, Laura started taking on leadership roles in her local and state chapters. In 1993, she joined the Board of Directors of AHRC New York City, representing her home borough of Staten Island. Laura was focused on helping the chapter be the go-to organization for families, supporting those recently receiving a disability diagnosis, and making the kind of connections that the Kennedy family had because of The Arc.

“In the mid-1990s, you still had some pediatricians telling families when they received a diagnosis, ‘Don’t take this on, for the sake of the rest of your family.’ Well, The Arc was there for families to show them that there was another way, and my family was living proof of what was possible,” said Laura.

“When I first learned about The Arc, I was drawn to the fact that family members make up the majority of the Board. That has a positive influence on how our chapters impact lives. There are other disability organizations that aren’t structured with that in mind, and so we are unique in our culture.”

As President of AHRC New York City’s Board, Laura worked with statewide advocates over two years to get the Governor to help families in disputes over their child’s special education services. They were successful in reversing the “burden of proof” in special education impartial hearings to place the burden on the school district, rather than on the parents.

In 2004, Laura stepped up to a state-wide position on the Board of Governors of The Arc of New York, which was then called NYSARC. She spearheaded a successful membership campaign that doubled the membership of the organization. Laura started attending The Arc’s dynamic national events—the Disability Policy Seminar, where she lobbied in Congress, and the National Convention, where she made lifelong connections. While serving as NYSARC’s president, in 2017, Laura successfully led the organization to fully brand with The Arc of the US.

Today, Julia is 41 years old, lives 10 minutes from her parents, and enjoys life in the community. She likes her outings for shopping and seeing shows, volunteers with Meals on Wheels, and continuously works on her life skills. Meanwhile, Laura hasn’t stopped leading. On Staten Island, in New York City, and in Albany, Laura stays busy by chairing AHRC New York City’s advocacy committee. She is currently the chapter’s longest serving board member. And as our national Board President, Laura is keenly aware of those that will be impacted by The Arc in the coming years, focusing on the future power of the national federation.

“If not us, who? The Arc is the go-to organization for people across the country. So much of what was there for Julia existed because of The Arc nationally and locally. We owe it to the next generation to be doing this work, all the time. What The Arc does is people work. It’s the best way to spend my time,” shared Laura. “We have much more work to do!”

Disability Advocates Urge Support for Emergency Funding Bill to Address Medicaid Care Crisis

October 24, 2023/in Advocacy, Press Releases, Public Policy/by The Arc

Washington, DC – Every person deserves the freedom of living in their own homes, being a part of their communities, and choosing how they spend their days. Medicaid’s home and community-based services makes that possible for millions of people with disabilities and older adults, yet chronic underfunding is forcing them into institutions and putting families in crisis. Today, the Home and Community-Based Services (HCBS) Relief Act was introduced by Senator Bob Casey (D-PA), a bill that would provide emergency funding to state Medicaid programs and have a profound impact on disabled and older Americans. The Arc applauds this pressing bill and urges lawmakers to pledge their support for independence and inclusion.

“Marginalized for far too long and facing catastrophic shortages of direct care workers, people with disabilities and their families are desperate for help,” said David Goldfarb, Director of Long-Term Supports and Services Policy at The Arc of the United States. “Without access to basic support for daily living, disabled people are at risk of being confined, isolated, and neglected in institutions or trapped in their homes. This is about the basic human right to live in the community. It’s time that we show people with disabilities that their lives not only matter, but that they are valued members of our society. The HCBS Relief Act would support and strengthen their daily lives, while also improving health, economic stability, and quality of life for their families and direct care workers.”

Millions of people rely on HCBS for daily activities, such as dressing, bathing, meal preparation, taking medication, employment support, mobility assistance, and more. The HCBS Relief Act would provide dedicated Medicaid funds to states for two years to stabilize their HCBS service delivery networks, recruit and retain HCBS direct care workers, and meet the long-term support and service needs of people with disabilities and older adults. The HCBS Access Act, which was introduced in March 2023, would make a transformational impact on the care crisis, but emergency relief is needed right now, which this bill would provide.

“My disability means I need assistance getting around and sometimes with communicating,” said Steve Grammer, a disabled person living in Virginia. “When I was 22, my mom fell ill and I was placed in a nursing home. I got to see her just once before she passed away. After 9 long years, my dream of independence came true. With the help of in-home caregivers, I have my own apartment and I can choose what I want to eat, where I want to go, and what I want to do. I no longer worry about my food being served cold or my medications being administered late. I can stay out late with friends while we listen to our favorite bands. I have freedom—and a life like yours. I’m living proof that people who have been barricaded away can live on their own and thrive while contributing to their communities.”

“I started out in an institution,” said Veronica Ayala, a disabled person living in Texas. “I was there for 18 really long months, and I was a child, so that was really traumatic. For 18 months, I didn’t have my mother to put me to bed, tell me a story, give me a bath. There was no love or attention given. Thankfully my mother realized that she could do it on her own with home and community-based services. With the right supports, anyone with a disability can live in their community. Anyone with a disability can succeed.”

Recent research from The Arc and the University of Minnesota shows that 35% of people with intellectual and developmental disabilities (IDD) are trapped on waiting lists for supports and services they desperately need, 19% of which have been waiting for more than ten years. This doesn’t just impact their lives – it’s having a ripple effect on their families and our economy. Nine in ten family caregivers reported that their careers have been negatively affected due to a lack of supports, and 66% have had to leave the workforce entirely. This is ultimately leaving families significantly stressed and financially strained.

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About 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. Founded in 1950 by parents who believed their children with IDD deserved more, The Arc is now 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. Through the decades, The Arc has been at the forefront of advances in disability rights and supports. Visit www.thearc.org or follow us @TheArcUS to learn more. 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 young Black woman with long curly hair holds a framed picture of a young girl. Her mother stands next to her.

Leah Should Have Never Been Restrained and Secluded

October 10, 2023/in Advocacy/by The Arc

Texas mom and advocate Jeanna is no stranger to the disability field. She has three children, two of whom have disabilities. She is also a professional advocate who helps families navigate Texas’ education and service systems.

In January 2020, when Jeanna learned that her 14-year-old daughter Leah was having major behavioral issues at school, she knew what steps to take. Leah is autistic and nonspeaking and has an intellectual disability. Jeanna began observing Leah’s behavior more closely, including her nonverbal communication. She recognized that Leah was engaging in self-injurious behaviors and appeared resistant to going to school. Jeanna reached out to the school to share her observations and seek a cause, but her concerns were dismissed.

By March 2020, the situation worsened. Jeanna was being called to pick up Leah three times a week, and Jeanna learned that Leah had been placed into standing restraints twice. When the worsening COVID-19 pandemic shut down Leah’s school, Jeanna took the time with Leah at home to figure out what was causing such a drastic change in her daughter’s behavior and willingness to go to school.

Jeanna knew that there was a camera in Leah’s classroom, so she sent several requests to the school for the footage. Her first two requests were denied. After learning that Leah’s teachers had been fired, Jeanna requested the video again and finally received 30 minutes of edited video from the days Leah had been restrained.

One incident showed Leah being restrained because she was trying to access a sensory box to help her calm down. During this restraint, “[Leah] was put face down on the ground with her arms on her back while two adults held her down. Her legs started lifting like she was having a hard time breathing.” Meanwhile, her educators and specialists spewed inflammatory statements and profanities toward her.

The second restraint occurred after Leah got upset at another student for using her crayons. Leah was restrained and then put into the classroom bathroom. The lights were shut off, and the door was closed. It wasn’t clear to Jeanna how long Leah was secluded in the bathroom.

Watching these incidents devastated Jeanna, who had not been informed that Leah had been put in a prone restraint or secluded.

“I was upset that I never had the opportunity to know what she was going through and give her the comfort and support she needed. I was also devastated because I had worked with Leah’s administrators for years. When I asked why I was not told the details in the months after the incident, I was informed by Leah’s special education coordinator that they didn’t tell me because the George Floyd incident had happened, and they knew I must be going through a lot with that. It made me suspect my family’s race was a part of how we were treated during and after the incident. It makes me cringe, but what else is there to think when this comment is made as a response?”

In 2022, Leah returned to the classroom, but the transition has been challenging. Jeanna advocated for Leah’s new teachers to implement strategies that will help Leah understand that she can be safe at school. Jeanna is thankful that Leah’s current educational team has treated her with respect and kindness, but she is concerned for other students like Leah, as the educators who abused her daughter are still teaching in similar settings in neighboring school districts.

Jeanna (right) and her oldest daughter, Brianna (left), who is holding a photo of Leah.

Jeanna is also working with Leah to help her advocate for herself. “As a parent of a nonspeaking child, we are encouraged to teach our children to comply with what other people want. There is no protest when people treat them badly because they haven’t learned how. She’s going to be 17 years old this year, and only now is she learning how to say no.”

Today, Jeanna shares her story in hopes that other students don’t have to go through similar experiences. She encourages parents to listen and pay attention to their children’s words and actions. “We know [our kids] the best,” she says. “When they start showing behaviors that are not typical for them, we need to listen to them. I still regret, to this day, not paying more attention to Leah’s communication.”

Jeanna and her oldest daughter, Brianna, founded Project LEAH, a family advocacy group in Texas. The group brings families together to advocate so that no one else must deal with what their family has. They credit The Arc of Texas for standing by their side and supporting their group’s growth and advocacy.

How You Can Help

The bipartisan Keeping All Students Safe Act establishes safety standards and provides better training and oversight to ensure the safety of students and staff and to prevent abuse and death. Sign our petition to support this important bill. You can also reach out to your state chapter of The Arc to support state-level education advocacy.

New Bipartisan Bill Would Advance Economic Security for Disabled Americans

September 12, 2023/in Advocacy, Press Releases, Public Policy/by The Arc

Washington, DC – The Supplemental Security Income (SSI) program was designed to combat poverty among people with disabilities, but the program’s outdated rules do just the opposite—forcing people to live in poverty to qualify for monthly assistance. Today, The Arc celebrates the introduction of the SSI Savings Penalty Elimination Act by Senator Sherrod Brown (D-OH), Senator Bill Cassidy (R-LA), Representative Brian Higgins (D-NY), and Representative Brian Fitzpatrick (R-PA). This bipartisan bill, which is also supported by over 370 organizations, makes long-overdue reforms to the SSI program that would empower millions of people with disabilities to earn and save more money for their futures.

The SSI program was established 50 years ago and provides critical benefits to over 7.5 million people with disabilities and older adults to help them pay for basic needs like food, clothing, and shelter. But outdated eligibility rules punish SSI beneficiaries for saving money, pushing them into poverty. SSI also guarantees access to Medicaid in most states, which covers long-term services and supports and health care. Right now, people who get SSI cannot have more than $2,000 in financial resources and married couples can only have $3,000. Resources that count towards the SSI asset limit include cash, money in bank accounts, most retirement accounts, stocks and bonds, the value of life insurance policies and burial funds over $1,500, and some personal property. This strict asset limit has not been updated since 1984 and is not indexed to inflation.

“Decades of inflation and inaction have turned a crucial safety net program into a tightrope,” said Darcy Milburn, Director of Social Security and Healthcare Policy at The Arc of the United States. “The maximum amount of money an SSI beneficiary can have in a bank account is 80% less than what beneficiaries were allowed to save in 1972. SSI’s strict asset limits force people with disabilities to live on a financial knife’s edge. It’s an incredibly difficult administrative burden and a very delicate balancing act that can easily tip to losing benefits altogether – which can be catastrophic.”

The SSI Savings Penalty Elimination Act would raise the SSI asset limit to $10,000 for individuals and index it to inflation moving forward. It would also raise the limit for married couples to $20,000 to help correct a harmful marriage penalty. The bill would significantly improve the lives of millions of people with disabilities and allow SSI beneficiaries to use their own savings to address needed emergencies when they arise.

SSI’s low asset limits combined with meager cash benefits are leaving 4 in 10 beneficiaries in poverty. People with disabilities live in poverty at more than twice the rate of those without disabilities, and SSI is a driving factor. These barriers are compounded by the Social Security Administration being in a state of crisis, where millions are waiting for appointments, decisions on applications, and appeals on rejected claims.

“Raising the SSI asset limit is one of the most important things we can do right now to improve financial security for millions of older adults and people with disabilities,” said Milburn. “The current asset limits trap people in poverty, create barriers to work, and make financial independence virtually impossible. SSI beneficiaries cannot save for necessary expenses like a security deposit or car repairs without the risk of losing their benefits, leaving many just one emergency away from homelessness and hunger. The negative impacts of the current SSI asset limits extend beyond individual SSI beneficiaries to their families, communities, and our economy as a whole.”

The Arc has advocated relentlessly for changes to SSI asset limits and against the existing unfair and discriminatory caps. For many years, we have urged Congress to update SSI requirements and benefits so that people with disabilities can have greater financial security and support, as well as pursue opportunities to build their futures.

To meet real-life people who are impacted by SSI asset limits, read these stories from Lauren and Jen and Eddie.

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About 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. Founded in 1950 by parents who believed their children with IDD deserved more, The Arc is now 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. Through the decades, The Arc has been at the forefront of advances in disability rights and supports. Visit thearc.org or follow us @TheArcUS to learn more. 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.

Media Contact: Jackie Dilworth, dilworth@thearc.org

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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