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Amicus Brief Filed in U.S. Supreme Court Case Emphasizes Importance of Testers to ADA Enforcement

/in /by The Arc

If testers are stripped of standing, the result will be less private enforcement of the ADA, a less accessible society, and the continued exclusion of people with disabilities from community life.

Washington, DC – Eighteen leading disability advocacy organizations have filed a “friend-of-the-court” brief in the U.S. Supreme Court in Acheson Hotels v. Laufer, a case that will decide whether testers—disabled people who investigate compliance with the Americans with Disabilities Act (ADA)—have the ability to sue businesses for discrimination when their rights under that law are violated. The case is scheduled to be heard on October 4, 2023.

Civil rights testing—intentionally investigating and challenging discrimination—has been used as an effective tool of enforcement since the 1950s, helping ensure that public accommodations were integrated and housing discrimination, challenged. Congress included the same enforcement tools when it passed the ADA in 1990 that it had included in these earlier civil rights laws, and testing has proven to be an essential enforcement tool in this context as well.

Deborah Laufer is one such tester. She is a person with disabilities who has filed numerous cases against hotels for violating an ADA regulation that requires hotels to include certain information about accessibility features in their online reservation systems. Ms. Laufer is a “tester” in her cases because she voluntarily puts herself in a situation to experience discrimination—specifically, she visits hotel websites to investigate compliance with the reservation rule—and when denied the information to which the ADA regulations entitle her, she challenges that discrimination in court and seeks to make the hotels comply with the law.

Despite acknowledging that they were, in fact, violating the ADA, hotelier Acheson doesn’t think that tester standing is fair, and argues that people like Ms. Laufer should have an immediate plan to stay at a hotel before they can challenge the hotel’s discrimination. Acheson asks the Supreme Court to reverse a First Circuit opinion upholding discrimination claims brought against them by Ms. Laufer as a tester.

The brief of amici opposes Acheson’s request and defends testing as essential to the enforcement of the ADA, arguing that eliminating tester standing would frustrate the ADA’s goal of equality of opportunity. Amici discuss how the indignity of unequal treatment has long been recognized as the sort of harm that can be remedied in court and explains how an individual’s motive, or status as a tester, does not change that. Amici also dispel a number of false claims made by Acheson and its supporters about ADA litigation.

“People with disabilities face rampant inaccessibility and discrimination that impacts every aspect of their lives—from travel to employment to health care and everything in between,” said Shira Wakschlag, Senior Director of Legal Advocacy & General Counsel at The Arc of the United States. “Despite the ADA’s promise to create equal access, insufficient oversight and enforcement means that businesses frequently ignore the civil rights of disabled people, making their daily lives extremely difficult and undermining the rights guaranteed by the law. ADA testers are essential to ensuring the rights of people with disabilities are enforced and protected and that the full promise of the ADA is realized.”

“If individuals with the fortitude to take on the burden of ADA litigation as testers are stripped of standing, the result will inevitably be less enforcement of the ADA, frustration of its goals, and the continued exclusion of people with disabilities from community life,” said Michelle Uzeta, Deputy Legal Director at the Disability Rights Education and Defense Fund.

“Given that the ADA was signed into law more than 30 years ago and thousands of businesses remain inaccessible to people with disabilities, it is critically important the Supreme Court affirms the ability of testers to investigate compliance,” said Marlene Sallo, Executive Director of the National Disability Rights Network. “Testers ensure that travelers with disabilities do not discover their hotel is inaccessible when they show up at the door.”

“By the time a disabled person attempts to patronize a noncompliant public accommodation, it’s too late for a lawsuit to be much use,” added Amy Robertson, Counsel for Amici at Fox and Robertson, PC. “Systemic investigation by those protected by the ADA can accelerate society’s progress toward a time when they and others can go about their daily lives expecting—and attaining—access to a wide range of facilities and services.”

Amici are represented by attorneys Karla Gilbride, Amy Robertson of Fox & Robertson, PC, Justin Ormand of Allen and Overy LLP, Thomas Zito of Disability Rights Advocates, and Michelle Uzeta of Disability Rights Education and Defense Fund.

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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.

About Disability Rights Education & Defense Fund: The Disability Rights Education & Defense Fund (DREDF) is a national, nonprofit law and policy center led by people with disabilities and dedicated to advancing and protecting the civil and human rights of disabled people. Founded in 1979 by people with disabilities and parents of children with disabilities, DREDF remains board- and staff-led by members of the communities for whom it advocates.

About National Disability Rights Network: The National Disability Rights Network works in Washington, DC on behalf of the Protection and Advocacy Systems (P&As) and Client Assistance Programs (CAPs), the nation’s largest providers of legal advocacy services for people with disabilities.

Media Contacts:
Jackie Dilworth, The Arc, dilworth@thearc.org
Tina Pinedo, DREDF, tpinedo@dredf.org
David Card, National Disability Rights Network, press@ndrn.org

A man wearing a dark suit sits in a wheelchair. Behind him is a wall of books.

The ADA’s Promise Must Still Be Realized: A Conversation With Sean Pevsner

/in , /by The Arc

For 33 years, the Americans with Disabilities Act (ADA) has protected the civil rights of people with disabilities.

We recently talked to disability rights lawyer Sean Pevsner about why the ADA matters and why there’s still so much to do to see its full promise fulfilled.

A man wearing a dark suit sits in a wheelchair. Behind him is a wall of books.Sean founded a law firm with his best friend, Mark Whitburn. At their firm, Sean works on special education law and practice, guardianship and probate proceedings, and other civil rights cases. He focuses on the ADA, the integration of individuals with developmental disabilities into society, and ensuring that students with disabilities receive the appropriate services under the Individuals with Disabilities Education Act (IDEA).

Sean has cerebral palsy and operates a motorized wheelchair using head movements. Due to his quadriplegia, he cannot write and must rely on an interpreter or a specialized computer to communicate.

People have underestimated Sean since the moment he was born. He was born clinically dead, and an anesthesiologist had to administer CPR for 45 minutes until Sean could breathe on his own. The anesthesiologist likely thought Sean wouldn’t survive, but Sean proved him wrong.

Sean began his schooling just as the IDEA was passed into law. When he wanted to leave the segregated private school to attend mainstream public school, he and his family had to fight to demonstrate that he could thrive there.

When his high school threatened to put him in remedial classes despite his excellent grades, Sean, his family, and Mark fought for his right to attend the same classes as his peers. They fought against teachers who thought he couldn’t handle the workload and administrators who thought he wouldn’t graduate. Despite doubters, Sean graduated from the University of Texas in 1998 with majors in Greek and Latin and, later, from the University of Texas Law School.

In 2011, Sean passed the Texas State Bar. It took him eight days to deliver every answer orally to interpreters. In the end, he was exhausted. At the swearing-in ceremony, Texas Supreme Court Chief Justice Wallace Jefferson specifically acknowledged Sean.

Sean was surprised to learn that the judge’s sister had invited the child of a family friend, a 9-year-old with cerebral palsy. She was seated in the front row so she could see someone like her become a professional advocate. “I did not believe anything could top my passage of the eight-day Texas Bar Exam,” says Sean, “but I was proven wrong.”

Q: What does the ADA mean to you? Why is it important to you in your personal life and your work?

The ADA means that individuals with disabilities have an equal opportunity to live and contribute to their community. It has broken down a lot of barriers to community-based services, such as community attendants, education, and employment. It also helps people with disabilities access many things that people without disabilities take for granted, like the ability to live independently in your community, without worrying about being forced into institutions, accessing education, and finding employment.

As someone with severe cerebral palsy, the ADA has helped me in many ways. My personal life has improved in terms of getting a quality education and becoming a licensed Texas attorney. I have equal access to public accommodations, such as hotels, office buildings, restaurants, and other public establishments. I have equal access to both state governmental and private entities’ programs and activities as well.

Q: In what ways is the ADA falling short 33 years after being passed?

The ADA has fallen short in increasing the employment rate for people with disabilities. While the ADA requires employers to provide effective job accommodations, it has not increased the recruitment and hiring of qualified employees with disabilities.

It also fails to eliminate institutional bias in the U.S.’s long-term care system. Even though the ADA requires state governmental entities to place people with disabilities in the most integrated setting (as the U.S. Supreme Court interpreted it in Olmstead v. LC), institutional bias is still a major issue in our country today.

Congress must pass, and the President must sign, the HCBS Access Act that would end this institutional bias. The HCBS Access Act would eliminate waiting lists for community-based services and increase wages for direct care workers.

Q: What has been the biggest or most important case you have done around the ADA?

I use the ADA to help others with disabilities get funding for community-based services to live in and contribute to society instead of being institutionalized. In Harrison v. Young, my law firm convinced a federal judge that the Texas Health and Human Services Commission (HHSC) violated Title II of the ADA by failing to provide funding to our client with multiple disabilities to live in a community group home. The HHSC attempted to place that person in an institution against their will. My law firm argued that this violated the integration mandate provision in the ADA.

Q: How can others get involved in advocacy to support the implementation of the ADA and disability rights progress?

We should conduct serious disability etiquette training to educate people about the ADA and the importance of including people with disabilities in all aspects of society. Generally, the public is uninformed about disability rights, the tenets of the ADA, and the importance of equality and inclusion of all people with disabilities.

There is also a myth that it is too expensive for the public and businesses to include and accommodate people with disabilities, both online and in person. However, the reality is that any cost is made up in increased employee productivity and access to new customers.

Finally, to achieve true inclusiveness and equality, the disability community must lead by example. We must accept others with different types of disabilities. People with polio or paraplegia must accept people with cerebral palsy, speech impairments, and intellectual disabilities. We should ensure our own community is fully inclusive of all people with disabilities and get rid of hierarchies of disabilities that separate us from working together.

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The Pandemic’s Devastation Continues for Many Families

/in /by The Arc

“It’s like a tornado has devastated us. But no one is coming to help.”

By Grace from New York

I have twin sons who have autism spectrum disorder and intellectual and developmental disabilities. One of my sons has significant needs and needs to attend a full-care and full-supervision day program. He graduated from high school in June 2020, but because of the pandemic, no day programs were open for him to attend.

Three years later, due to the pandemic’s devastation of adult services and programs, there are still no programs available for him, nor are there any programs for the graduates of the classes of 2021, 2022, and soon, the class of 2023. And there is nothing on the horizon for any of them.

My son has been home for three years without supports or services.

I had to leave my job to stay home and care for him full-time, even though I am a single parent, and I was the only source of income for my family. Now, we are struggling terribly, both financially and physically, trying to survive under these extreme conditions.

The devastation of the pandemic has not ended for our family and others like ours. My son has been left with no direct care support, no respite, no day program—no services at all. The main cause for this failure is the lack of funding for programs and staffing. It was a fragile system at best pre-pandemic, but now, it has been decimated.

The best analogy is that it has been similar to when a tornado levels a town, and the community must rebuild everything completely. That is what happened to the programs and services for adults with disabilities during the pandemic. But the big difference in our story is that no Red Cross has shown up to help. No FEMA. No one is coming to help.

We have been left out here in our decimated landscape for three years now. And the idea that Congress may want to further cut financial support to programs for this most vulnerable population is beyond comprehension.

Please take the time to look at what has happened, to see the suffering, and to offer the compassion and realistic financial support so desperately needed.

Many young adults with disabilities face similar challenges when transitioning out of school. Life for these students shouldn’t stop when their schooling ends. This problem is not new, but the COVID-19 pandemic has increased its severity and effect nationwide.

Congress must deepen its investment in Medicaid home and community-based services so people with disabilities have the support they need to take part in their communities throughout their lifetimes.

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The Arc’s Statement on the Passing of Senator Lowell Weicker, Jr.

/in /by The Arc

There has never been a more influential and monumental moment in disability rights than when the Americans with Disabilities Act (ADA) passed in 1990. This legislation transformed the lives of millions of people with disabilities and continues to pave the way for anti-discrimination and accessibility. One of the lead Senate sponsors of the ADA, Senator Lowell Weicker, Jr. (R-CT), passed away on June 28, 2023, leaving behind a multigenerational legacy of inclusion. Senator Weicker was a parent of a child with Down syndrome and wanted more for our society and his son’s future than isolation and segregation. He knew firsthand that people with disabilities have diverse and rich perspectives and talents and they deserve a place in society alongside everyone else. He bridged the divides of parties, influencing his fellow members of Congress to consider disability rights as a bipartisan issue, an impact that is felt to this day.

The Arc appreciates the critical role Senator Weicker played in the development and funding of major disability programs through his chairmanship of key Senate subcommittees. He used his position to investigate and hold influential hearings on the treatment of people with intellectual and developmental disabilities, mental illness, and other disabilities in institutions at that time, laying the groundwork for future reforms. As Senator Weicker stressed in his address to Congress, “Disabled persons may represent a minority in this country, but they are a minority any of us may join at any time… you can secure to [my son] and his 43 million peers a happiness that only comes with love equally devised and administered.”

We are in awe of Senator Weicker’s courage and persistence in fighting to get groundbreaking disability rights legislation into law, as well as his ongoing advocacy for the independence and inclusion of people with disabilities.

A photo from 1988 depicting a family of six. Three people are standing in the back, including a young adult man in a dark suit and purple tie; a woman wearing sunglasses, a white blouse with black polka dots, and white pants; and a man in a track suit. Two young men in suits are sitting in chairs in front of them. Another young man, also wearing a suit, is sitting cross-legged on the floor between them.

Roy’s Fight to Keep His Three Adult Sons at Home and Out of Institutions

/in /by The Arc

As parents of adult children with intellectual and developmental disabilities (IDD) grow older, they may face concerns about what their child’s life will look like when they are no longer able to provide care. Certain questions become important and can be agonizing to think about, such as:

  • How will my child’s life change when I’m gone?
  • Where will they live?
  • Who will pay for the things they need?

For Roy, these questions are all too familiar.

A professional photo of Roy and Arleen's family from 1976. Arleen is sitting in the middle and is wearing a tan dress. She has short, dark brown hair, red lipstick, and is wearing a gold necklace and earrings. Her husband, Roy, is on the left; he has shaggy brown hair and is wearing a light tan suit with a dark brown shirt underneath. Their three sons are seated behind them and to the right; they all have shaggy, bowl haircuts and dark brown hair. The young man behind Roy has a small moustache and is wearing a blue jacket. The young boy next to Roy is smiling and has a white turtleneck on. The young boy next to Arleen has a very big smile. He's wearing a blue jacket with a white collared shirt.

The first time Roy and his wife, Arleen, heard the word autism was in 1963. The high school sweethearts had been married just two years and they were told their son, Roy Jr., who was only a year old, had autism.” After Roy Jr., Arleen and Roy had two more sons, Michael and Glenn, and all three children would eventually be diagnosed with autism and fragile X syndrome.

In those days, institutions were the only options in New York state for people with disabilities. Looking for the best care for their sons, Roy and Arleen visited the Willowbrook State School. The deplorable conditions shook the couple to their core. Roy and Arleen made a vow to each other that day: each of their sons would live at home with their parents all their lives.

The visit to Willowbrook was a turning point in Roy and Arleen’s lives. The family devoted themselves to advocating for their children and others with IDD. Thanks to their advocacy efforts, Roy Jr., Michael, and Glenn attended IDD parent-founded provider agency schools until the Individuals with Disabilities Education Act (IDEA) was enacted in 1976. IDEA guarantees students with disabilities the right to a free and appropriate public education—and after it was passed, the three boys were able to attend public school.

Twelve years ago, Roy’s “dear cherished bride” of 50 years passed away, leaving Roy to care for his three sons alone. After several years of advocacy, Roy received approval from his state agency to convert his home into a certified group home for his three sons and two other men. In 2019, when the family’s in-home residential services were ended by the provider who had served them for 20 years, Roy set up self-directed care for his sons and became an immediate supervisor for a staff of seven.

A photo from 1988 depicting a family of six. Three people are standing in the back, including a young adult man in a dark suit and purple tie; a woman wearing sunglasses, a white blouse with black polka dots, and white pants; and a man in a track suit. Two young men in suits are sitting in chairs in front of them. Another young man, also wearing a suit, is sitting cross-legged on the floor between them.Since then, Roy Jr. and Glenn have both passed away. While both lived at home until their passing, they suffered at the hands of an underfunded system of care. Despite these losses and challenges, Roy has remained steadfast in his commitment to keeping his middle son, Michael, in his own home all his life.

Four people have been selected and approved to live with Michael. However, for the past two years, the agency Roy is working with to run the group home has been prevented from opening because they are unable to hire staff at the low salary rate authorized by Medicaid for this type of home. On average, direct care workers get paid just $14 an hour, which is much lower than the hourly rates for similar jobs.

Roy is doing all he can to help plan for Michael’s future. He’s now 84 and Michael will be 60 this summer. Roy wants to ensure Michael is safe at home. For that to happen, Congress must invest in critical supports for people with IDD.

Millions of people with disabilities, like Roy’s son, Michael, rely on Medicaid home and community-based services to live at home in their communities. But due to the fact that Medicaid must fund institutions, and home and community-based services (HCBS) are optional, states don’t have the funding to support everyone in the community.

To change this, Congress must invest in HCBS now!

Roy’s efforts to ensure his son can live at home in his community should not be hindered by decisions in Congress and a lack of investment in disability services.

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A Major Win for Disability Rights From SCOTUS!

/in /by The Arc

Statement from Shira Wakschlag, Senior Director of Legal Advocacy and General Counsel for The Arc of the United States, on Health and Hospital Corporation of Marion County v. Talevski:

“Today is a monumental win for disability rights and the principle that a private right of action is critical in the access, accountability, and antidiscrimination of our country’s Medicaid and safety net programs. The U.S. Supreme Court has upheld the rights of Medicaid beneficiaries to seek legal recourse when state officials are violating their rights. It sets a crucial precedent that will have far-reaching implications for people with disabilities in our health care system, housing, nutrition, education, disability, and other safety net programs. People with disabilities have long faced pervasive discriminatory treatment within American society, and they have relied on lawsuits to enforce Medicaid’s protections, including the landmark Olmstead v. L.C. case. One in four adults in America has a disability, the majority of whom rely on Medicaid and other safety net programs to live meaningful lives. Because of today’s decision, they will continue to have legal recourse if they face mistreatment or abuse or their benefits are taken away or denied, which happens more often than you may think. The Arc and our national chapter network help people with disabilities navigate these complex government systems, which frequently fail to help the people who need them most. Private lawsuits have been one of the only ways people can meaningfully enforce their rights in these crucial programs. This decision also ensures there is accountability for service providers, which has a direct impact on the quality of services and supports that millions count on. Ultimately, today’s win prevents the unraveling of 30 years of antidiscrimination progress set forth by the ADA, as well as ensuring that people with disabilities are less likely to be unnecessarily institutionalized. We urge health care providers, policymakers, and community leaders to embrace this decision and recognize the pivotal role safety net programs play in promoting health equity and ensuring the well-being of people with disabilities.”

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Disability and Aging Groups Join Senator Bob Casey and Hundreds of Care Advocates for a Save Medicaid Online Rally

/in /by The Arc

Washington, DC —Disability and aging groups were joined by Senator Bob Casey, care advocates, and nearly 500 activists from around the country for a Save Medicaid Online Rally on May 24. During the rally, attendees sent demands to Congress to stop any cuts to Medicaid, an essential program that 88 million Americans rely on for their health care, including 54 million older adults, children, and people with disabilities.

The rally, hosted by The Arc of the United States, Autism Society of America, Disability and Aging Collaborative (DAC), Consortium for Constituents with Disabilities (CCD), and Caring Across Generations, served as an opportunity for supporters to learn more about the harmful effects of work requirements and program cuts against Medicaid included in the Default On America Act. This rally is one of many actions supporters and care advocates across this country are participating in to save Medicaid, including last week when Caring Across Generations delivered 12,000 petitions and The Arc of the United States delivered 86,000 petitions demanding Congress put a stop to harmful cuts.

“Let’s call it like it is: the Default On America Act will directly harm millions of families across this country. I find it alarming that this extreme proposal will take Medicaid away from millions who do not meet new bureaucratic work requirements, including people who have a hard time finding work, such as family caregivers, older people over 50, and disabled people,” said Nicole Jorwic, chief of advocacy and campaigns at Caring Across Generations. “This plan puts a false choice in front of us: take care away from families, children, older adults, and disabled people or force a default that will disrupt Social Security checks and raise interest rates on credit cards, mortgages, and car payments. There is a better way: raise the debt ceiling cleanly and invest in the care we need by making the ultra-wealthy and big corporations pay their fair share.”

“Medicaid is a lifeline for people with disabilities, and its underfunding has already created a crisis of care,” shared David Goldfarb, Director of Long-Term Supports and Services Policy at The Arc of the United States. “Many people with intellectual and developmental disabilities (IDD) have serious medical needs and already face barriers to accessing safety net programs and our health care systems. Millions of them are falling through the cracks right now because these complex systems have overwhelming red tape and years-long wait lists. Adding work requirements to Medicaid will only exacerbate disparities and discrimination against people with IDD and jeopardize their access to life-sustaining health care and community living.”

“The stakes have never been higher,” stated Christopher S. Banks, President and CEO of the Autism Society of America. “Cutting Medicaid will further exacerbate the current unacceptable waiting lists for services and support for people with Autism. Understandably, aging parents and caregivers have intense anxiety surrounding the fears of what will happen to their family members after they are gone. We must create equitable and accessible health care for Autistic individuals and the greater disability community.”

According to Carol Tyson, Chair of the Consortium for Constituents with Disabilities, “People with all types of disabilities rely on Medicaid for access to critical health care, and services and supports to live in, and contribute to the community. The evidence is clear that Medicaid work requirements are not effective. Medicaid work requirements would create unnecessary barriers and result in millions of the already underserved facing life-threatening cuts to essential coverage. Congress must prioritize the health and well-being of people with disabilities, and all those who rely on Medicaid and essential programs, by rejecting proposals that would cut Medicaid funding, impose work requirements, or restrict access to care.”

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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.

About Autism Society of America: The Autism Society’s mission is to create connections, empowering everyone in the Autism community with the resources needed to live fully. As the nation’s oldest leading grassroots Autism organization, the Autism Society and its approximately 70+ local affiliates serve over half a million members of the Autism community each year. It envisions a world where everyone in the Autism community is connected to the support they need, when they need it – including education, advocacy efforts, and supports and services throughout the lifespan. For more information, visit autismsociety.org.

About Disability and Aging Collaborative: The Disability and Aging Collaborative (DAC) is a coalition of approximately 40 national organizations that work together to advance long-term services and support policy at the federal level. Formed in 2009, the DAC was one of the first coordinated efforts to bring together disability, aging, and labor organizations.

About Consortium for Constituents with Disabilities: The Consortium for Constituents with Disabilities (CCD) is the largest coalition of national organizations working together to advocate for Federal public policy that ensures the self-determination, independence, empowerment, integration and inclusion of children and adults with disabilities in all aspects of society free from racism, ableism, sexism, and xenophobia, as well as LGBTQ+ based discrimination and religious intolerance.

About Caring Across Generations: Caring Across Generations is a national organization of family caregivers, care workers, disabled people, and aging adults working to transform the way we care in this country so that care is accessible, affordable and equitable— and our systems of care enable everyone to live and age with dignity. To achieve our vision, we transform cultural norms and narratives about aging, disability and care; win federal and state-level policies; and build power amongst the people touched by care. For more information, visit caringacross.org.

The torso of a young student wearing a light blue jean jacket over a white shirt. The student is holding three books and a notebook in their left hand and is wearing a backpack. You cannot see their face.

The Arc of Spokane: Empowering Parents To Be Better Advocates at School and Beyond

/in /by The Arc

The Arc of Spokane empowers and supports parents of adults and kids with disabilities through their Parent to Parent program. In 2022, the chapter saw an opportunity to expand their support of parents of school-aged kids with disabilities by leveraging grant funding to provide scholarships to The Arc@School’s Advocacy Curriculum.

The Advocacy Curriculum is a self-paced, online training, designed to support families in navigating the special education system. It takes users through the special education basics and prepares them to effectively advocate for appropriate educational services and supports.

Recently, we spoke with The Arc of Spokane’s Advocacy and Family Support Director, Jennifer Oliveri, and their Parent to Parent Coordinator, Tami Leitz. They shared how their idea to provide scholarships to the Advocacy Curriculum came to life, how their program works, and why they think other chapters can replicate this successful model.

Identifying a Need and an Opportunity

Tami: Part of my job involves parent training, and we have designated funds to help with that [through a grant from the county]. In the past, we were sending people across the state to an infant and early childhood conference, but it wasn’t very accessible for parents of children with disabilities—and it was also only for early childhood.

So, I talked to Jen, who’s my supervisor, and asked if we could think of some better ways to use the funds. One of the ideas we had was to give people scholarships to The Arc@School’s Advocacy Curriculum. We want to help as many people as possible, but it’s impossible to go to every IEP meeting, so the more people we can get educated about the law, the more we can ensure parents are able to hold school districts accountable. Jen loves new ideas and was on board with putting a proposal together.

Jennifer: We’re funded through Spokane County for parent training. So, we outlined a few ideas for them on different ways we could use the money, including Tami’s proposal. We know that IEPs are a top priority, but we wanted to give them a few choices. Thankfully, they approved the use of funds for IEP training. This means we are able to give scholarships to parents to access the Advocacy Curriculum for free.

Adapting the Program to Different Learning Styles

Tami: The first time we did this, I offered two options. Parents could either go through the online curriculum on their own, or they could come to a one-hour Zoom class on Tuesdays. We scheduled the Zoom classes during a lunch break time slot, and we would go through the online modules together. After each video, we would talk about any questions they had. Then, we would go through some additional PowerPoint slides I made with state and county specific information.

I made slides for each module because things can vary a lot from state to state. I wanted to make sure parents got information about things like how to access the birth-to-three program or what transition looks like in their area, because it can vary from school to school. After that, parents could stay on Zoom with me if they had personal questions. I did that every Tuesday for eight weeks with that group, and we went through the entire curriculum together.

“I highly recommend The Arc@School curriculum to parents of kids on IEPs and 504s. I learned so much!” – Alisha, WA

For some people, having that accountability works. But then you also have parents who are a little more independent, busier, and just happy to go through it on their own.

Empowering Families & Why Learning How to Advocate Is So Important

Tami: We really focus on empowerment and celebrating education. We don’t want families to feel like they’re powerless and the systems are impossible. Sometimes, I get people where maybe their child is 16 and they say, “Well, we’re almost done. What’s the point of learning this now?” But it’s still so important to learn how to advocate, because they’re going to be working in systems like this forever with their child. Parents will have to use this skill later in their journey when dealing with Supplemental Security Income (SSI) or the Developmental Disabilities Administration or vocational rehabilitation, so it’s never too late.

Empowering parents and caregivers with this information is vital. They are not being educated about their rights, so, often, their student’s education, relationships, and mental health suffer because of it. Schools regularly [don’t comply with the law], and most people—sometimes even the teachers—don’t realize it’s happening or how to intervene. When people understand their rights, advocate, and expect to be treated fairly, systems can change. This curriculum is important to support individual families, but on a larger scale, it’s the kind of resource we need in order to see systematic change.

Advice for Chapters Interested in Replicating This Program

Tami: One of the hardest things about an IEP is communicating the information to a student’s team from year to year. A new school year can feel like a total do-over to families. By empowering [them] with this information, it can save time for advocates and parent support professionals.
[It’s also helpful for] family resource coordinators, therapists working for school districts, and teachers to go through the curriculum. These professionals act as guides to families in schools, but many may not have had the opportunity to learn about special education law. The curriculum equips them with knowledge, but it can also give them a greater capacity for empathy by providing a better understanding of what people with disabilities are up against when trying to access services.

Jennifer: It’s like the adage of “teaching people to fish.” While we can provide one-on-one support to those seeking assistance with IEPs on a limited basis, in Spokane County specifically, there are hundreds of people who need assistance with understanding their rights when it comes to the school system. This model supports more people and gives them the lifelong tools to advocate with confidence. I don’t know if every chapter has extra funds necessarily [to start a similar program], but it could be worth it to look into grant funding to try to replicate this model.

Is your organization interested in learning more about how to start a similar program? Send us an email at school@thearc.org and a member of our team will get back to you.

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Special Education Is Complex. New Partnership Will Give Indiana and Maryland Families Free Support.

/in /by The Arc

Washington, DC, May 19, 2023 – From low expectations and a dire shortage of special educators to isolation and informal suspensions, a quality education is not easy to obtain for U.S. students with disabilities. Caregivers of children with disabilities must become experts at advocating for their children in order to get the support they need. Today, Lids Foundation announced that is providing a $50,000 grant to The Arc to give Indiana and Maryland families free access to The Arc@School, an evidence-based special education advocacy curriculum. This grant has the potential to help over 285,000 children with disabilities living in those states succeed and build bright futures.

The Individuals with Disabilities Education Act (IDEA) was enacted nearly 50 years ago with the goal of providing equal opportunities for students with disabilities. Yet this foundation for the special education system has long failed these students, many of whom don’t receive the education and support they need to thrive. There is also little to no guidance or support for families navigating these complex systems. Lack of access to a quality education continues to cause not only significant gaps in academic achievement for students with disabilities, but also life skills and socio-emotional development – particularly for those with intellectual and developmental disabilities.

The Arc@School was created in 2016 in response to decades of troubling testimonies from self-advocates. The Arc@School is a self-paced online training program that helps caregivers of children with disabilities navigate the special education system from birth through age 21. The Special Education Advocacy Curriculum teaches families their rights under the law, how to ensure the school writes and implements an effective individualized plan (IEP), and how to work with their school to get their accessibility and support needs met. The program has eight modules that total nearly 10 hours of training. The partnership with The Arc and Lids Foundation will be a catalyst for building nationwide power and skills among families so their children with disabilities are valued members of the school population, particularly marginalized communities whose voices are often ignored.

“We are thrilled to partner with Lids Foundation and The Arc of the United States to provide free access to The Arc@School’s Special Education Advocacy Curriculum,” said Ande Kolp, Executive Director of The Arc of Maryland. “This partnership will offer strong support to Maryland families interacting with these confusing and broken systems that continue to cause extraordinary disparities among students with disabilities and their peers.”

“The Lids Foundation is excited to partner with The Arc and their mission to protect the rights of people with intellectual and developmental disabilities,” said Sarah Lim, Executive Director of Lids Foundation. “As a Foundation, we seek to remove barriers that prevent people from being able to live their lives to the fullest potential and cannot wait to join in on and be a part of the solution for so many families through The Arc chapters in Indiana and Maryland.”

“The number of calls we are getting from families about special education issues is exploding,” said Karly Sciortino-Poulter, Director of The Arc Advocacy Network at The Arc of Indiana. “Some of the ways that schools are treating students with disabilities would blow your mind. Thanks to this partnership with Lids Foundation, we can educate Indiana families on their rights and help ensure their children get an appropriate education.”

Lids Foundation has its roots in Indiana and Maryland, which is why this one-year, $50,000 grant is opening doors to families in those states. In Maryland, there are 109,443 students utilizing special education resources, which is 12.4% of the total Pre-K through 12th grade population. In Indiana, there are 175,866 students utilizing special education resources, which is 16.96% of the Pre-K through 12th grade population.

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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. 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. Visit www.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.

About Lids & Lids Foundation: Lids Sports Group is the largest licensed sports retailer in North America, selling fan and fashion-oriented headwear and apparel across the North America, Europe and Australia through over 1,500 retail locations. The Lids Foundation provides support directly to local communities and to the charitable organizations that serve them to enable community members of all ages to live more active, healthy, and productive lives. Visit www.lids.com or www.lidsfoundation.org to learn more.

Media Contact: Jackie Dilworth, dilworth@thearc.org

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Schools Are Restraining and Secluding Students With Disabilities. New Bill Would Limit Practices.

/in /by The Arc

Students with disabilities disproportionately experience restraint and seclusion, practices that are not evidence-based and cause lasting trauma.

Washington, DC, May 18, 2023 – Restraint and seclusion are traumatic, outdated, and ineffective discipline practices that are commonplace in schools throughout the country. Even though they have caused thousands of injuries and deaths, there are no federal laws to protect children from the abusive use of these tactics. Today, Senator Chris Murphy and Representative Don Beyer reintroduced the Keeping All Students Safe Act (KASSA) for the 14th Congress in a row. KASSA would eliminate the use of seclusion and prohibit the practice of restraint in most cases and give parents a private right of action against school districts that misuse these practices. Restraint and seclusion are disproportionately used against students with disabilities, particularly Black students, and have long-lasting consequences on their achievement and health. We urge Congress to once and for all pass minimum federal safety standards for these practices.

“Protecting students with disabilities from physical harm and abuse shouldn’t be a debate, but it’s something we’ve been fighting for over a decade,” shared Robyn Linscott, Director of Education and Family Policy at The Arc of the United States. “Instead of evidence-based de-escalation practices, untrained school personnel are subjecting students with disabilities to terrifying violations of their human rights and their lives. Thousands of times a day, students are being locked in closets and bathrooms, pinned to the ground, restrained with mechanical devices for hours, and worse. These practices are life-threatening and they’re denying students with disabilities a full and safe inclusion in our education system. Now is the time for elected officials to show their constituents that their safety in school matters.”

Restraint is intended to be used as a last resort in emergencies when there is a threat of imminent physical harm. Too often, it is used for minor behavioral issues, not complying with instructions, or even to punish manifestations of a child’s disability. Over 101,990 students, the majority of which are students with disabilities, are subjected to restraint and seclusion every year, a number that experts agree is drastically underreported. Students with disabilities represent 13% of the student population, but account for roughly 80% of those subjected to restraint and 77% subjected to seclusion. Some students are repeatedly restrained and secluded despite the fact that there is no evidence these tactics are effective in reducing the occurrence of the behaviors being punished. A patchwork of state policies and a lack of federal oversight and accountability allow these practices to continue freely.

To make matters worse, many parents are not notified at all or in a timely manner after their child is subjected to restraint or seclusion. In some cases, parents have gone weeks or years without knowing these disciplinary tactics were used against their child. This is particularly challenging for parents of children with intellectual and developmental disabilities, many of whom are not able to communicate what happened to them. KASSA would ensure parents are notified of an incident of restraint within 24 hours.

Since 2009, the Keeping All Students Safe Act (KASSA) has been introduced every Congress, but it has not garnered the support it needs to pass. Restraint and seclusion are serious civil rights issues affecting students with disabilities proportionately. KASSA would create federal standards around the use of these practices, empower families when their rights are violated, and offer a variety of supports and contingency plans to help teachers and school personnel effectively respond to medical and behavioral needs.

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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