A woman wearing a blue shirt pushes her daughter, wearing a green patterned shirt, in a wheelchair. Behind them is a grassy lawn.

People of Color With IDD and Disparities in Health Care

In 2021, the Centers for Disease Control declared racism a serious threat to public health. For people of color with disabilities, the threat is dire – they face multiple barriers to health care.

Unique Royster is a young Black woman with a disability. She and her mother Irene Kelley faced disparities in accessing health care when Unique needed surgery, leaving them frustrated.

Irene is demanding the fair treatment of people with disabilities in health care and in society.

“Make room for my child because she deserves to be here just as much as you do,” said Irene. “I want a world who accepts her for who she is and can appreciate her gifts.”

Irene and Unique shared their story with The Arc.

Rows of empty desks in a classroom

Mask Mandate Preliminary Injunction Continues to Protect Iowa Children

A federal district court today granted a preliminary injunction in our mask mandate lawsuit, blocking enforcement of Iowa’s law prohibiting schools from requiring facemasks.

Previously, the court had issued and then extended a Temporary Restraining Order (TRO), which also blocked enforcement of this harmful law. A preliminary injunction will stay in place as the lawsuit progresses and until the court makes a final decision on the merits of the case.

The court recognized that COVID-19 rates in Iowa continue to pose a risk of severe illness or death to children with disabilities or immunocompromised children represented in the lawsuit who are too young to qualify for the vaccine. The order continues to recognize that the law prohibiting masking requirements at school is likely to violate the civil rights of children with disabilities, including children with underlying conditions that make them more vulnerable to severe illness or death as a result of COVID-19.

With the law blocked, schools remain free to require masks in school. This is something we urge schools to do, in order to meet their obligations to all students as required by the Americans with Disabilities Act (ADA) and Rehabilitation Act.

“The court is making it clear, once again, that students with disabilities have the right to go to school safely during this pandemic. The Arc will continue fighting to ensure that students with disabilities are able to attend their neighborhood schools alongside their peers without disabilities without putting their health and their lives at risk,” said Shira Wakschlag, Senior Director of Legal Advocacy & General Counsel at The Arc.

“With the continuation of this crucial injunction blocking HF847’s masking prohibition, schools are able to require masking in order to meet the needs of kids in their district who have disabilities, including underlying conditions that make them vulnerable to serious illness, hospitalization, or death from COVID-19.  They should continue those masking requirements they’ve put in place, and if they haven’t already, take steps now to adopt masking in school in order to comply with disability rights obligations,” said Rita Bettis Austen, Legal Director at ACLU of Iowa.

The lawsuit is brought by the American Civil Liberties Union, ACLU of Iowa, Disability Rights Iowa, The Arc of the United States, and law firms Arnold & Porter and Duff Law Firm, P.L.C. on behalf of The Arc of Iowa and 11 parents of children with disabilities.

A senator stands in a suit, speaking in front of a group of activists. The US Capitol is behind them, and beside the Senator are 5 large white boxes stacked.

Senator Bob Casey Meets Disability Rights Advocates From 24-Hour Storytelling Vigil, Urges Congress to Pass the Build Back Better Plan

Activists From Across the Nation Deliver 7,500 Stories from Individuals Impacted by Dearth of Home and Community-Based Services

Photos of the Vigil and Rally: https://bit.ly/3ahKPN9

A senator stands in a suit, speaking in front of a group of activists. The US Capitol is behind them, and beside the Senator are 5 large white boxes stacked.

WASHINGTON, DC – OCTOBER 07: Sen. Bob Casey (D-PA) speaks at a 24-hour vigil outside of the U.S. Capitol building, Sen. Bob Casey (D-PA) joins people with disabilities and advocates to demand funding for home care services in President Biden’s “Build Back Better” package before Congress on October 07, 2021 in Washington, DC. (Photo by Paul Morigi/Getty Images for Unbendable Media)

Senator Bob Casey met disability rights activists and care workers who participated in a 24-hour storytelling vigil and reiterated his commitment to fully fund services critical for the health and well-being of people with disabilities and aging adults. Flanked by dozens of ADAPT activists in wheelchairs, SEIU members in purple shirts and other prominent caregiving advocates, Senator Casey closed out the vigil outside the Capitol Thursday by imploring his colleagues in Congress to vote “yes” on the transformative Build Back Better plan that could “put the country on the road to having the best caregiving in the world.”

Advocates from the diverse “Care Can’t Wait” coalition of disability rights, labor, health, aging and caregiving groups also shared the steep health and financial costs that families pay as a result of poverty wages paid to care workers and long waitlists for home and community-based services (HCBS).

“I came here today because I am literally fighting for my life and freedom,” said Latoya Maddox, a mother from Philadelphia who has used HCBS for the past 17 years and is active in Philly ADAPT. “Home and community-based services and accessible housing keep me from being stuck in an institution to get my needs met-something nobody of any age wants. I want Congress to understand that their political games are putting my life and my freedom at risk, and to stop the posturing and realize what your inaction is doing to real people.”

Earlier in the vigil, advocates traveling from states hard hit by COVID-19—including Tennessee, Texas and Kansas—continuously read stories collected from thousands of impacted individuals—disproportionately people of color— across the country who were unable to travel to D.C., in part because they do not have access to paid leave, childcare or long-term services.

More than 800,000 people with disabilities are on waiting lists for HCBS, such as in-home care, meal delivery, transportation services and respite care. The Better Care Better Jobs provisions in the budget reconciliation seeks to eliminate long standing HCBS waitlists and allow states to expand the number of people who are eligible to receive these essential services.

“We need Congress to pass the Better Care Better Jobs Act and invest the proposed $400 billion in Medicaid HCBS funding,” said Nicole Jorwic, Senior Executive Officer of Public Policy at The Arc and one of the advocates who participated in the 24-hour vigil. “Together, we must recognize this unprecedented opportunity to begin fixing our nation’s inadequate care systems and transform the way we treat people served, and those providing the care, who deserve dignity, respect, and opportunity. Our nation must finally recognize the value of all people and significantly invest in care during this historic moment.”

Even as negotiations around the biggest jobs plan since the New Deal have stalled, the long-term care provision in the Build Back Better plan is still popular with the overwhelming majority of people across the country.

“People across the political spectrum overwhelmingly want Congress to invest in the care infrastructure that is the backbone of our economy and our lives,” said Ai-jen Poo, Executive Director of Caring Across Generations and National Domestic Workers Alliance. “Increasing wages for care workers will ensure that they can care for themselves and their own families. Increasing wages will also make care work more sustainable in the long-run and ensure a more robust workforce that can meet the rising demand for these services.”

The event was co-hosted by ACLU, ADAPT, The Arc of the United States, Autistic Self Advocacy Network, AAPD, Bazelon Center for Mental Health Law, Be A Hero, Care Can’t Wait Coalition, Caring Across Generations, Little Lobbyists, Justice in Aging, National Council on Independent Living, National Domestic Workers Alliance, National Council on Aging, National Health Law Program, and SEIU.

A group of activitists poses in front of the US Capitol at night, holding light up signs that say Care Can't Wait

The United States Capitol Building

Disability Rights, Care Workers to Hold 24-Hour Vigil at the U.S. Capitol to Hold the Line on Care Funding

As negotiations around the biggest jobs plan since the New Deal stall, care advocates from across the country will hold a 24-hour vigil outside the U.S. Capitol to urge elected leaders to hold the line on caregiving funding in the Build Back Better plan.

People with disabilities, direct care workers, older adults, and caregivers will share the steep health and financial costs that families pay as a result of poverty wages paid to care workers and long waitlists for home and community-based services (HCBS). Advocates traveling from states hard hit by COVID-19—including Tennessee, Texas and Kansas—will continuously read stories collected from thousands of impacted individuals—disproportionately people of color— across the country who aren’t able to travel to D.C. in part because they don’t have the paid leave, child care or long-term services that enable them to do so. Overwhelming majorities of people across the country want Congress to invest in long-term care and support the Build Back Better’s plan to do so.

WHAT:

A 24-hour vigil in front of the Capitol during which advocates will continuously read stories of those struggling to access home and community based services and to make enough money to care for themselves and their families. The vigil will culminate in a closing ceremony with advocates delivering boxes of printed out stories to members of Congress.

The event is co-hosted by ACLU, ADAPT, The Arc of the United States, Autistic Self Advocacy Network, AAPD, Bazelon Center for Mental Health Law, Be A Hero, Care Can’t Wait Coalition, Caring Across Generations, Little Lobbyists, Justice in Aging, National Council on Independent Living, National Domestic Workers Alliance, National Council on Aging, National Health Law Program, and SEIU.

WHEN: 

Vigil: Wed, Oct 6 at 7 pm to Thurs, Oct 7 at 7 pm

Closing Program: Thurs, Oct 7 from 6-7 pm

WHERE: 

Union Square in front of Capitol Reflecting Pool

The area is bounded by Pennsylvania Avenue, NW; First Street, NW/SW; Maryland Avenue, SW; and Third Street, SW/NW

Live Stream: https://fb.me/e/3WaL3atkg

WHO:

Closing ceremony speakers:

  • Bob Casey, S. Senator representing Pennsylvania
  • Maria Town, President and CEO, AAPD
  • Mike Oxford, National Organizer, ADAPT
  • Nicole Jorwic, Senior Executive Officer of State Advocacy and Public Policy, The Arc
  • April Verrett, President of SEIU, Local 2015

Vigil speakers available for media interviews:

  • Domonique Howell, a Black and disabled advocate from Philadelphia. She is an independent living specialist and co-chair of ADAPT’s housing work group.
  • Latoya Maddox, a Philadelphia-based Black disabled mother who has used home and community-based services for the past 17 years
  • Lydia Nunez, Ombudsman and organizer with Gulf Coast ADAPT in Texas. She is white and disabled and fights for home and community-based services for other people with disabilities and older adults.
  • Josue Rodriguez, a Latino organizer with El Paso ADAPT who uses HCBS for attendant services.
  • Family caregivers and care workers 

VISUALS:

People holding posters and banners featuring portraits of care workers, family caregivers, aging adults and people with disabilities. Miniature houses featuring portraits of care recipients, caregivers and care workers

BACKGROUND:

More than 800,000 people with disabilities are on waiting lists for home and community-based services (HCBS), such as in-home care, meal delivery, transportation services and respite care. The Better Care Better Jobs Act—introduced in the Senate by lead sponsor Sen. Bob Casey and in the House by lead sponsor Rep. Debbie Dingell and supported by over 480 organizations—provides a blueprint for how $400 billion investment in HCBS could support a profoundly undervalued and underpaid workforce and get hundreds of thousands of people off waitlists by helping to:

  • Increase access to HCBS: expanding financial eligibility criteria for HCBS and supports for family caregivers, and adopting programs that help people navigate enrollment and eligibility.
  • Make permanent “Money Follows the Person,” a federal demonstration program that helps aging individuals and people with disabilities transition back to their homes and communities from institutions by providing federal matching funds that incentivizes HCBS in states
  • Support oversight and monitoring of the quality of HCBS
  • Increase HCBS payment rates to promote recruitment and retention of care workers
A young man sits smiling on a white couch with white blinds in the background. He is wearing a black shirt with the yellow word "ARMY" on it.

The Arc Recognizes Neli Latson and Lisa Alexander With Catalyst Award

WASHINGTON – The Arc is honored to announce Neli Latson and his mother, Lisa Alexander as recipients of our 2021 Catalyst Award. The award recognizes individuals, businesses, and other organizations that have made extraordinary contributions toward greater social inclusion and the advancement of the human and civil rights of people with intellectual and developmental disabilities (IDD).

“We are honored to recognize Neli and his mother Lisa with The Arc’s most prestigious award. Their strength and commitment to fighting for what’s right and for the human rights of people with intellectual and developmental disabilities entangled in the criminal legal system is exemplary and should serve as a model to society. In the face of discrimination and mistreatment, Neli and his mother never stopped challenging injustice. They have been relentless in shining a light on the need to recognize and respect the humanity of all people, including those with disabilities. The Arc is proud to honor Neli and his mother as true catalysts of change,” said Peter Berns, Chief Executive Officer of The Arc.

Neli persevered in the face of unjust prosecution and abuse in the criminal legal system for more than a decade, throughout his 20s. Displaying courage and an urgency to bring about systemic change, Neli and his mother never gave up seeking justice and fighting for his freedom. They spoke truth: telling the world that Black people with disabilities and all BIPOC people with disabilities experience disparate treatment in policing, in the criminal legal system, and beyond.

Lisa displayed unwavering love and leadership, fighting for her son, throughout this long ordeal. The two are committed to ongoing advocacy to prevent other people with disabilities from suffering from such horrific abuse and discrimination.

In June of this year, after years of advocacy by Neli and his mother, The Arc of the U.S., The Arc of Virginia, a coalition of other groups, and Neli’s attorneys, Virginia Governor Ralph Northam granted Neli a full pardon.

The Catalyst Awards recognize individuals and organizations that are changing how society perceives and treats people with disabilities. Each honoree has done something remarkable that helps fulfill The Arc’s mission to promote and protect the human rights of people with IDD.

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 over 600 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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

Photo of desks in a classroom with dim, moody lighting

Federal Court Blocks Iowa’s Law Banning Masking Requirements in Schools

DES MOINES, Iowa — A federal district court today blocked Iowa’s law prohibiting schools from requiring masks. The court ruled that the law violates the civil rights of children with disabilities, including children with underlying conditions, who are more vulnerable to severe illness or death as a result of COVID-19.

The decision makes clear that children have a right under Title II of the Americans with Disabilities Act and Section 504 of the Rehabilitation Act to equal access to their educations, which for some children with underlying conditions and disabilities, requires that schools implement universal masking requirements.

The district court recognized that “forcing children to bear the brunt of societal discord is ‘illogical and unjust’” and cited data showing that “the current level of the delta variant in Iowa has increased the infection rate and severity of infection. Some public schools in Iowa are experiencing COVID-19 infection rates at upwards of 60 percent that of last year’s total for the entire school year.” The court also cited data showing that the number of children hospitalized due to COVID-19 is also on the rise.

The decision comes in a case brought by the American Civil Liberties Union, ACLU of Iowa, Disability Rights Iowa, The Arc of the United States, and law firms Arnold & Porter and Duff Law Firm, P.L.C. on behalf of The Arc of Iowa and 11 parents of children with disabilities.

The following statements are from:

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

“The court is making it clear that students with disabilities have the right to go to school safely during this pandemic. The Arc will continue fighting to ensure that students with disabilities are able to attend their neighborhood schools alongside their peers without disabilities without putting their health and their lives at risk.”

Rita Bettis Austen, legal director of the ACLU of Iowa:

“We are grateful to the district court for blocking this dangerous law, which put vulnerable kids in harm’s way and violated their civil rights in education. We are relieved that schools across the state will now be able to protect those kids as required by federal law. No parent should be asked to choose between the safety and health of their child and their child’s ability to go to school, but that’s exactly the position that this law put parents across Iowa in.”

Susan Mizner, director of the ACLU’s Disability Rights Program:

“This is a huge victory for our plaintiffs and all parents of children with disabilities who have been forced to choose between protecting the health of their children and ensuring they receive an education alongside their peers. This decision opens the door for schools across Iowa to take basic public health measures to protect their students. It also should send a message to other states that they cannot put politics above the rights and safety of students with disabilities. Disability rights laws were passed precisely for this situation – in which children with disabilities health and education would be sacrificed for the convenience of the majority. Banning the possibility that schools may require masks — in the middle of a pandemic — discriminates against school children with disabilities. All students with disabilities should be able to attend school safely, as federal disability rights laws guarantee.”

Catherine E. Johnson, executive director, Disability Rights Iowa:

“The order entered today restores our students’ with disabilities long-held civil rights of equal access to their education and full inclusion with their general education peers in the school curriculum and all other activities and programs offered by their school. Today is a monumental day for all plaintiffs, as well as all Iowans forced to choose between sacrificing their child’s health or education opportunities. Effective today, parents no longer have to make this impossible choice, their children are entitled to both.”

Photos and videos of some clients, attorneys, and organizational logos available here: https://drive.google.com/drive/folders/1-XIhBS5ZyNVRRh9lENyhqMbJi5PLqqky

More details about this case are here: https://www.aclu.org/press-releases/lawsuit-challenges-iowa-law-banning-schools-requiring-masks

The decision is here: https://www.aclu.org/legal-document/arc-iowa-v-reynolds-order-granting-temporary-restraining-order

This statement is here: https://www.aclu.org/press-releases/federal-court-blocks-iowas-law-banning-masking-requirements-schools

 

Lawsuit Filed Challenging New Texas Law Targeting Voting Rights

Today, the NAACP Legal Defense and Education Fund, Inc. (LDF), Reed Smith LLP, and The Arc filed a federal lawsuit on behalf of the Houston Area Urban League, Houston Justice, Delta Sigma Theta Sorority, Incorporated, and The Arc of Texas challenging S.B. 1, a new Texas law targeting voting rights. S.B. 1 includes a series of suppressive voting-related provisions that will make it much harder for Texas residents to vote and disenfranchise some altogether, particularly Black and Latino voters and voters with disabilities.

The lawsuit, which was filed in the United States District Court for the Western District of Texas, argues that S.B. 1 violates the First, Fourteenth, and Fifteenth Amendments of the United States Constitution and Section 2 of the Voting Rights Act by intentionally targeting and burdening methods and means of voting used by voters of color.

The Plaintiffs also claim that the law violates the Americans with Disabilities Act and Section 504 of the Rehabilitation Act of 1973 and Section 208 of the Voting Rights Act by imposing voting barriers that will discriminate against voters with disabilities and deny people with disabilities full and equal opportunities to participate in the state’s voting programs.

The lawsuit challenges multiple provisions in SB 1, including:

  • Limitations on early voting hours and a ban on 24-hour voting.
  • The elimination of drive-thru voting centers.
  • The prohibition of mail-in ballot drop-boxes.
  • Limitations on the distribution of mail-in ballot applications.
  • Limitations and possible penalties for voter assistants, including criminal felonies.

Read the lawsuit challenging S.B. 1.

“Despite Texas legislators’ repeated and disingenuous attempts to cite ‘voter fraud’ as their reasoning for implementing S.B. 1, it is clear as day that this law was created to suppress votes,” said LDF Assistant Counsel Georgina Yeomans. “Rather than expand voting access, elected officials are making it harder for Texans to vote – especially voters of color, who will be disproportionately burdened. S.B. 1 was intentionally designed to have that effect.”

“Democracy should make it easier for eligible voters to vote, not harder,” said Ken Broughton, managing partner of Reed Smith’s Houston office. “Democracy should also increase voter turnout, not inhibit it. This legislation will prevent many qualified voters from voting because these laws are anti-voter.”

“Voter suppression is a disability rights issue. People with disabilities have the fundamental right to vote and participate in our democracy, but this right has too often been denied. S.B. 1 disenfranchises voters with disabilities and denies them equal access to voting in violation of federal disability rights laws,” said Shira Wakschlag, Senior Director, Legal Advocacy & General Counsel at The Arc.

“The Houston Area Urban League has a long history of supporting the disenfranchised. Any law that makes it harder for them to have their voices heard under the cloak of rampant voter fraud is disingenuous and contrary to our democracy,” said Houston Area Urban League President and CEO Judson Robinson III.

“The law at its core is anti-democratic and clearly designed to suppress the vote,” said Tina Kingshill, Coordinating Director of Houston Justice. “It will further hinder voting rights of low-income, pre-trial defendants of color unable to post bail who comprise over 70% of local and county jail populations. By prohibiting the expenditure of public funds to facilitate third-party distribution of applications to vote by mail, the law burdens non-profit voter outreach organizations with funding the printing costs of the applications. Many organizations will not have the funds for printing, so essentially the right to request and cast a ballot while incarcerated is taken away.”

“Delta Sigma Theta Sorority, Incorporated has been fighting for the rights of all U.S. citizens to vote for 108 years. It is our honor and responsibility to continue the fight against oppressive voting laws started by our Founders,” said Delta Sigma Theta President and CEO Beverly E. Smith. “S.B. 1 directly threatens the right to vote of over 20,000 members of Delta Sigma Theta Sorority and their family and friends in Texas, and we are committed to fight against S.B. 1 on their behalf.”

“Texas voters with disabilities are proud to participate in the democratic process and deserve equitable access to the polls, not more barriers,” said The Arc of Texas CEO Jennifer Martinez. “Unfortunately, these same Texans are accustomed to fighting for their civil rights and must continue to do so against the latest voter-suppression measures passed by the Texas Legislature.”

Texas is among more than 40 other states that have enacted legislative efforts to substantially restrict voting access. LDF and The Arc are also involved in litigation challenging Georgia’s restrictive voting law that also discriminates against voters of color and voters with disabilities. Read more here.

Woman on escalator wearing a face mask; she's holding a cell phone in one hand and her suitcase handle in the other

Lawsuit Challenges Iowa Law Banning Schools From Requiring Masks

Eleven parents of children with disabilities and Iowa disability rights groups have filed a federal lawsuit today challenging an Iowa law that bans school districts from imposing mask mandates in schools. 

The parents and disability rights advocates are taking the action to protect children who are too young to be vaccinated whose disabilities, including underlying health conditions, make them particularly susceptible to severe illness, long haul COVID symptoms, or even death from COVID-19. They argue that the ban on mask mandates discriminates against these students in education, effectively excluding them from public schools and denying them equal access to education. That is a violation of the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act.

Earlier this year, the Iowa Legislature passed House File 847. It prevents local school districts from requiring anyone to wear a face mask and was signed into law by Gov. Kim Reynolds.

The lawsuit filed today is asking the district court to block the provision of the law prohibiting mask requirements at school as a violation of federal law (ADA and the Rehabilitation Act) and to order the state to allow school districts to adopt mask mandates for their students and staff. 

The clients in the case are The Arc of Iowa and 11 parents of minor children across the state with disabilities whose health could be at risk due to the enforcement of this provision. 

They are represented by the American Civil Liberties Union, the ACLU of Iowa, Disability Rights Iowa, The Arc of the United States, the Arnold & Porter law firm, and the Duff Law Firm, P.L.C. 

 

Charmain Alexander of Urbandale is one of the clients in the lawsuit. Her son, Corban, has asthma. “I am doing this to help create a safe environment not only for my own child but for all children, including those with disabilities and other conditions. You would think that schools would make the safety of their students their top priority, but unfortunately, that is not happening because of this law. 

“It’s important that children have the opportunity to learn in person. I think most parents have seen that over the last year. But what are you supposed to do when you’re in my position and are afraid that if you send your child to school so that they can keep up with their education, you’re afraid that the worst might happen?”

Another client, Heather Preston of Des Moines has two school-age children. One has a rare organ disorder, which her doctor has advised her puts him at risk for serious illness if he contracts COVID. 

“I know that a parent can’t protect their child from all things, but they have a responsibility to protect them from serious safety threats. And for my son, going to a school where not everyone is wearing masks puts him at huge risk. Meanwhile, because of his needs, he needs to be learning in person.

  “It’s terrifying for a parent to have to worry every day about the physical safety of their child, and to have to choose between their child keeping up with their education and their child becoming seriously ill, or perhaps even dying. That’s a choice no parent should have to make. I want my children to come home safe from school.” 

ACLU of Iowa Legal Director Rita Bettis Austen said, “HF 847 is a civil rights violation that puts vulnerable kids in a dangerous situation. We all should be able to agree that it’s not fair to force kids out of school because they have health conditions and disabilities that put them at a higher risk of serious complications from COVID. It’s also not fair to require parents to expose their children to these risks just so they can go to school. We are asking the court to block HF 847 so that our schools will be able to require masks when necessary to ensure an equal education for all kids.

Susan Mizner, director of the ACLU’s Disability Rights Program, said, “Prohibiting schools from taking reasonable steps to protect the health of their students forces parents to make an impossible choice: their child’s education or their child’s health. Students with health conditions or disabilities that make them vulnerable to COVID have a right to attend school without endangering their health or safety. Schools who have children with these conditions have legal obligations under federal disability rights laws.”

“Under the Americans with Disabilities Act and Section 504 of the Rehabilitation Act, public schools cannot exclude students with disabilities nor deny them equal access to their education or segregate them unnecessarily. Schools are obligated to provide reasonable modifications to policies, practices, and procedures in order to give students with disabilities an equal opportunity to benefit from their public education,” Mizner said. 

“The COVID-19 pandemic has not absolved Iowa schools from these requirements, and Iowa officials cannot waive these obligations for them,” Mizner said. 

Doug Cunningham, Executive Director of The Arc of Iowa, an advocacy organization for people with intellectual and developmental disabilities, said, “This should not be a political issue. It’s an issue that affects the health and wellbeing of the children with disabilities in our state, and I would like to think that all political groups embrace that basic principle.” 

“This law is making it impossible for many students to go to school. I see first-hand how families have to make an awful choice—the health or safety of their child or their education. Being safe at school is a right. Getting an education is a right. I’m hopeful this lawsuit will correct this terrible situation that our state government is creating for nearly any family in the state who has a school-aged child with a condition threatened by COVID,” Cunningham said. 

Catherine (pronounced kath-REEN) E. Johnson, Executive Director of Disability Rights Iowa, said, “Excluding students with disabilities from public education was routine practice prior to Congress enacting federal protections. For more than 40 years, students with disabilities have been protected from discrimination based on disability by Section 504 of the Rehabilitation Act and the Americans with Disabilities Act. These federal laws guarantee students with disabilities the right to equal access to a public education alongside their general education peers. HF 847 effectively excludes students with disabilities from public education and denies them equal access, in violation of the Americans with Disabilities Act and Section 504 of the Rehabilitation Act. We request the court block HF 847 so that public schools can comply with their obligations under Section 504 of the Rehabilitation Act and the Americans with Disabilities Act, and restore our students with disabilities civil rights to equal access to education.”

Other clients have also provided statements:

Erin Vercande of Decorah has a child who has cerebral palsy as well as epilepsy and has strokes. 

“COVID has hit the community of disabled children and their families especially hard. My son loves school. He loves his classmates, teachers, associates, and therapists. He loves and needs the stimulation from the other children at school and all the fun things he gets to participate in. But he’s at risk of serious illness if he gets COVID,” Vercande said. 

“With the mask mandate ban this year and other factors within our school district, my son is currently unable to attend school. The mask mandate ban is in direct violation of precautions recommended by his doctors for him to be able to attend school safely. My son has a legal right to go to school. Our state is denying him, and others like him, that right. My son doesn’t have a voice to fight for his rights. But I do. And I will fight for him and all the other children like him that are being denied that right.” 

Jonathan Craig, a Waterloo father of four children impacted by the ban, said, “Every child deserves an education in a safe environment. As the father of four children, two of whom are immunocompromised and have chronic illnesses, I’ve seen first-hand the devastating effects of what happens when children are not afforded their right to a safe and equitable public education,” Craig said. 

“Because masks aren’t allowed to be required in public schools in Iowa this year, our pediatrician recommended that all four of our children, who are too young to be vaccinated, stay home and learn through virtual learning, as contracting COVID-19 would be life-threatening to our family,” Craig said. 

“Because of my daughter’s physical and developmental disabilities, she isn’t able to engage with virtual learning and we’re heartbroken to watch her fall through the cracks. We’ve seen our son (who has worked incredibly hard to overcome his own learning difficulties) flourish during his years of in-person schooling but he has fallen behind academically and socially since learning behind a screen for eight hours a day,” he said. 

“If school districts could mandate masks the way they were able to last year, it would give kids like mine the chance to have an equitable educational opportunity and we could make the best decisions for our family’s health,” Craig said. 

The complaint can be found here.

a young boy in a hospital bed with medical equipment on his face. He is smiling.

Surviving on a GoFundMe Campaign: How a Hospital Stay Without Paid Leave Forced One Family Into a Crisis No One Should Face

A selfie of a young boy with his father. They are laying in a hospital bed together and the son has a hospital gown on and medical equipment on his face and neck.

For Kerri, Ken, and their family, Father’s Day weekend 2019 started out as planned—peaceful and filled with quality family time. But early Saturday morning, Kerri and Ken awoke to their 17-year-old son, Yosh, screaming in pain. His stomach had swollen so badly overnight that it looked like a beach ball.

They were terrified for their son. Yosh, who has Down syndrome and autism, is not able to express himself well with verbal language and struggles to understand what is going on around him. However, even without words to explain what he was experiencing, it was clear his pain was severe.

Over the next several days, Yosh was placed in an induced coma as the hospital staff performed tests—and unfortunately found blockages throughout his intestines. For Kerri and Ken, the news was devastating. Yosh had never had any stomach issues. They grappled with trying to understand what was happening—all the while, never leaving Yosh’s side. They barely left the hospital as Yosh received treatment, taking turns watching him while the other rested.

They ended up at their local hospital, where Yosh is considered a VIP because of his frequent visitor status and is well-known to the hospital staff. But even as familiar with Yosh as the hospital staff are, Kerri and Ken know him best. To diagnose Yosh, Kerri says “you have to look for flying hippos with pink and purple spots” and she and Ken knew they needed to be there to help.

However, as the days turned to weeks, Kerri and Ken had to deal with something no parent should have to imagine: choosing between being with your seriously ill child and working.

Kerri and Ken are self-employed. While New Jersey has paid leave, it only covers workers who receive W2s, so both Kerri and Ken were left without help.

Kerri and Ken lived with a fear no parent should have to experience: that not only could each day be their son’s last, but that they would also lose their home in the process.

While they knew that Yosh’s Medicaid would pay for his hospital bills, without income coming in, they were terrified they would have no place to return to when the hospital stay ended. It was the scariest time of their lives. Both still experience post-traumatic stress from the situation, and Kerri shakes every time she passes the hospital.

A selfie image of a mom and her teenage son. She is wearing a white t shirt, green lanyard, glasses, and a bandana. He is wearing a yellow shirt and has medical tape and equipment on his face and neck.

While they were in the hospital, a GoFundMe campaign was set up for Yosh and his parents. Family, friends, friends of friends, and strangers donated to Kerri, Ken, and their family that summer.

And, through their help, they were able to pay for their mortgage, utilities, and other essentials.

Kerri and Ken are so grateful for the generosity of others—but also angry that when they were at their lowest point, there were no resources for their family. In addition to advocating for their son, Kerri advocates for and with other families in her work.

“There are so many families that are out there that don’t even know there are resources for them… When a family is in crisis, there needs to be some place for them to go and call in someone who has the knowledge and resources to help them.”

Kerri and Ken don’t want anyone else to ever go through what they did. Paid leave shouldn’t depend on the kind of tax form you get from your job. And no one should have to choose between being there for loved ones and their homes and livelihood.

Learn more and act now to help families like Kerri and Ken’s nationwide.

Visit thearc.org/covid19recovery to learn more.

Rows of empty desks in a classroom

Judge Rules Kanawha County Special Education Lawsuit Can Proceed as Class Action

Federal Judge Irene Berger has ruled that a lawsuit on behalf of Kanawha County students with disabilities can proceed as a class action lawsuit.  The decision to certify the class will affect hundreds of Kanawha County’s students with disabilities who are removed from their classrooms for behavior related to their disabilities.  The case was filed by Mountain State Justice, Disability Rights of West Virginia, The Arc of the United States, the Bazelon Center for Mental Health Law, and represented pro bono by the law firm Latham & Watkins LLP.

Judge Berger’s decision states that the plaintiffs, two individual Kanawha County Schools (KCS) students and The Arc of West Virginia, “have provided significant evidence that KCS does not provide the oversight, support, and resources necessary to support students with disabilities whose behavior impedes their learning or that of their classmates.  It is clear from the Plaintiffs’ data that for many students with emotional and intellectual disabilities, behavior issues are interfering” with the students’ ability to receive an appropriate education.  Judge Berger also stated that “[i]t is equally clear that KCS’s approach is not working.”

Judge Berger’s ruling significantly widens the lens of the lawsuit, G.T. v. Board of Education of the County of Kanawha, which was filed In January 2020.  As a class action, the lawsuit will look beyond the education provided to the two individual KCS students, and will focus on a school district-wide examination of KCS policies, practices, and procedures that result in the denial of a free and appropriate education, free from discrimination, to all KCS students with disabilities who need behavior supports and are suspended or otherwise taken out of their classrooms because of their disability-related behavior.

Lydia Milnes, Senior Attorney with Mountain State Justice, stated “Judge Berger’s order recognizes that the KCS administration has failed to take a leadership role in ensuring that students with disabilities get the support they need to stay in school, and has instead shifted that burden to classroom teachers, who already have too much on their plates.”

Lori Waller of Disability Rights of West Virginia, the state’s “protection and advocacy” agency that advocates for children and adults with disabilities, added, “This litigation is a great opportunity to improve the school experience for children with disabilities.”

Judge Berger’s opinion noted that the students and their families provided “exhaustive” and “significant” evidence of district-wide problems with how KCS addresses the behavior support needs of its students with disabilities, including “a pattern of continuing behavior problems and continuing classroom removals, with repeated suspensions, office referrals, lunch detentions, classroom exclusions, bus suspensions, expulsion petitions, and unofficial parent pick-up requests.”

Judge Berger also noted plaintiffs’ evidence that “KCS staff went through the motions of completing appropriate paperwork without adequately identifying and addressing issues.”  Among other things, evaluations of the students’ needs “do not fully address the needs of students with significant or consistently recurrent behavioral challenges, do not provide sufficient information to develop recommendations for behavioral supports, and do not address developmental, family, or sociocultural issues that have clear relationships to patterns of problem behavior.”

Shira Wakschlag, Senior Director of Legal Advocacy & General Counsel, The Arc of the United States, said “This is a critical step towards justice for students with disabilities in Kanawha County and ensuring that they have the supports they need to thrive in their neighborhood schools among their peers without disabilities. We will continue to fight for them in this litigation.”

Lewis Bossing, Senior Staff Attorney of the Bazelon Center for Mental Health Law, stated “Judge Berger’s opinion makes clear that KCS’s failures to support its students with disabilities are systemic, and that systemic changes are needed.  We hope that KCS will work with us to address the problems that Judge Berger has identified.”

Judge Berger ordered the plaintiffs and KCS to try to negotiate a resolution to the class action, with the assistance of attorney Robert B. Allen of the Charleston law firm Kay Casto & Chaney PLLC.  If the parties are unable to resolve their differences, the litigation will move forward, with trial currently scheduled for August 2022.

Robin Hulshizer, a partner with the pro bono law firm Latham & Watkins LLP, which also represents the plaintiffs, stated “As Judge Berger noted in her opinion, Kanawha County Schools rarely provides behavior supports that are customarily offered in other school districts.  Instead, the behavior supports KCS does provide ‘tend to be directed at performance deficits, with an implicit assumption that the student is capable of performing the desired behavior but chooses not to.’  With this lawsuit, we seek for students to be given the supports they are entitled to by law to be successful both in school and their communities.”

 

About Mountain State Justice

Mountain State Justice is a non-profit legal services firm dedicated to redressing entrenched and emerging systemic social, political, and economic imbalances of power for underserved West Virginians, through legal advocacy and community empowerment offered regardless of ability to pay. To learn more, visit https://mountainstatejustice.org/.

About Disability Rights of West Virginia

Disability Rights of West Virginia (DRWV) is the federally mandated protection and advocacy system for people with disabilities in West Virginia. DRWV protects and advocates for the human and legal rights of persons with disabilities. To learn more, visit https://www.drofwv.org/.

About The Arc

The Arc is the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities (IDD) and their families. In partnership with its network of more than 600 chapters across the country, including The Arc of West Virginia, The Arc works to promote and protect the rights of people with IDD to live, work, and learn in the community free from discrimination. To learn more, visit www.thearc.org and www.thearcofwv.org