Rows of empty desks in a classroom

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

/in /by Pam Katz

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.thearcwebdev.wpengine.com and www.thearcofwv.org

A close up of a speaker at a podium.

The Impact of Student Loan Debt Forgiveness for the Disability Community

/in , /by Pam Katz

My name is Nicole LeBlanc.

I live in Silver Spring, Maryland. I am on the autism spectrum and have anxiety, ADD, seizures, and a learning disability. I am writing to talk about the importance of helping people with disabilities get their student loans discharged, including ending the 3 year monitoring period. As the Biden Administration works to address student loan debt for people with disabilities, it is critically important that the application process be easier and we eliminate the 3 year monitoring period for work earnings. Student loans create a major financial hardship on people like me and many others with disabilities, especially those who live on their own in expensive areas. The amount of loans that I had discharged was around $1,177 which is just slightly less than what I pay in monthly rent for my studio apartment. No one with a disability should have to choose between paying for rent or basic needs and student loans. Many of us in the disability community struggle with finding jobs that pay livable wages where we make enough to live comfortably off public benefits. Benefit cliffs often force us to make big trade-offs between working and needing to stay eligible for public benefits. Some people with disabilities have their Social Security benefits cut to pay their student loans and that isn’t fair.

The application process for student loan discharge needs to be easier and more accessible to fill out, especially for someone with autism or other disabilities who does not get any HCBS services to help complete complex paperwork and navigate government bureaucracy. All government applications should allow us to submit info online without incurring the cost and hassle of printing and mailing stuff. I am glad the Biden Administration started to do that for some people with disabilities, but all people with eligible disabilities should be included.

By letting people with disabilities discharge loans and eliminating the 3-year income monitoring period, it will go a long way towards eliminating the stress and anxiety that comes with the financial challenges of living with a disability. There is no better time like the present to embrace a commitment to creating a stress and anxiety-free world for people with disabilities and their families. Making these changes is one of the best ways the Biden Administration can fulfill President Biden’s campaign promises to the disability community.

The United States Capitol Building

During Congressional Recess, We Must Raise Our Voices for Care!

/in , , , /by Pam Katz

By: Nicole Jorwic, Senior Director of Public Policy

After a slight delay, both Senators and Representatives are back in their states and districts for August recess, but in fact, it goes until mid-September. That means it is a key time to engage, reach out, and share your stories about why Medicaid home and community-based services (HCBS) matter in the lives of people with disabilities, their families, direct care workers, and the care infrastructure.

Every year, The Arc sends out t-shirts and signs to support advocates and encourage them to get out and ask their members of Congress to support the legislative priorities of people with disabilities. Those boxes were sent out to chapters this year, but with the ongoing pandemic, it is clear that in-person events may not be the best option. Moreover, we know that accessibility issues at town halls, even virtual ones, are a constant barrier to access.

While The Arc staff continues the work to increase access to the political process for all people with disabilities, an alternative way for ALL people with disabilities to participate fully in recess, and have their stories known had to be created.

That is why today, The Arc is launching the “Raise Our Voices for Care” campaign. Even if you can’t get to DC, your state capital, or a local town hall, your story still matters and must be shared. Our story tool is easy to use. At the end of recess, we will put all of those stories together to show the strength of all the voices rising up to support the $400 billion investment in Medicaid Home and Community-Based Services.

As a sister to my brother Chris, who doesn’t use his voice to speak, I know how incredibly important it is that we ensure that every person has the ability to communicate, and that includes with their legislators. Join us, share your HCBS story, and help us Raise Our Voices for Care because #CareCantWait!

SHARE YOUR STORY NOW

 

The Arc logo

The Arc Celebrates Senate Passage of the $3.5 Trillion Budget Resolution to Invest in Crumbling Care Infrastructure

/in , , , , /by The Arc

Washington, D.C. – The Arc is encouraged that the U.S. Senate took an important step in favor of respecting the human dignity of people with disabilities and aging adults. Wednesday, the Senate passed a $3.5 trillion budget resolution triggering the start of the reconciliation process.

The vote paves the way for Congress to pass a comprehensive spending package that would provide generational investments in our nation’s crumbling care infrastructure and groundbreaking benefits that could reshape the future for millions of people with intellectual and developmental disabilities, American families and their children.

“The historic investment in Medicaid Home and Community-Based Services (HCBS) included in the budget resolution will be transformative for a system that currently leaves almost one million people waiting for services all over this country,” said Peter Berns, Chief Executive Officer of The Arc of the United States. “People with disabilities and aging adults, have struggled, well before the pandemic, with a system that does not include the resources to support them in their homes and communities. The infrastructure of care for these groups currently includes the labor of unpaid family caregivers who fill in the gaps in the service system, and a paid workforce that is not paid a family sustaining wage. The $400 billion included to both expand access to HCBS and raise wages for the direct care workforce will shore up the care infrastructure so that people with disabilities can live independently, aging adults can age in place, and family caregivers can return to the workforce.”

The Arc also strongly supports the inclusion of a national paid leave program and hope to see other priorities such as long-overdue improvements to the Supplemental Security Income program included in the final package.

Close up of a person holding a small leather wallet in their left hand and pulling out a folded dollar bill

Stuck in Time: SSI Desperately Needs Updating

/in , , , /by The Arc

By: Bethany Lilly

My parents celebrated their golden wedding anniversary last year. Fifty years is a long time, and so much has changed—the internet, cell phones, self-driving cars, and we’ve seen so many disability rights victories. Next year, the Supplemental Security Income (SSI) program will also turn 50. But this milestone for SSI is almost disappointing because in those 50 years, the rules of SSI have barely changed. Passed in 1972, SSI was designed to keep the lowest income adults and children with disabilities and older adults from living in poverty. But Congress has ignored this crucial lifeline and failed to update it, instead leaving people with disabilities and older adults trapped in deep poverty, for fear of going over the limits and losing benefits. Rules that haven’t been updated in a half century govern how much money people who rely on SSI can earn, how married couples who receive the benefit are treated by the federal government, the amount of income the program provides, and how much help family and friends are allowed to give to loved ones on SSI. Rules about how much people can save haven’t been updated for almost 40 years!

SSI is supposed to fill in the gaps of other government support programs, paying for housing and other expenses that aren’t covered by Medicaid. But the current rules make that almost impossible. If someone is relying on SSI, the cost of renting a one-bedroom apartment almost anywhere in this country will consume more than the maximum monthly SSI payment of $794, leaving practically nothing for other expenses like groceries and other necessities. And limiting savings to only $2,000 means that many people cannot save enough to even move into an apartment or house. People can end up trapped in institutional settings, with no ability to afford an alternative. Like so many other parts of the disability service system, SSI is crucial infrastructure that is crumbling due to decades of neglect.

Nothing has made that clearer than the pandemic. With a maximum monthly SSI benefit of $794, people with disabilities are struggling to afford the necessities of pandemic life like masks, grocery delivery, and increased prices for so many basic goods. Restricted from saving more than $2,000, no SSI recipient could rely on their savings to get them through the past 17 months and the uncertainty that is ahead during this ongoing pandemic. Accepting help from family, friends, or mutual aid means a benefit cut. And because of marriage penalties, couples face an even harsher financial reality. Even the government’s COVID relief efforts created problems–stimulus checks and unemployment insurance expansions created eligibility issues because the systems used to implement these rules are equally archaic, unable to adjust to new benefits. For the millions of people with disabilities who are eligible for Medicaid because they are eligible for SSI, this was not only an issue with income security, but also put their access to health care and home and community-based services (HCBS) at risk.

Just as the pandemic highlights the need to expand HCBS and finally address the workforce crisis for direct care workers, it also shows us that the program that is supposed to pay for everything else is trapping people with disabilities in poverty. Enough is enough. We must fix these archaic SSI rules.

President Biden acknowledge the need for change during the presidential campaign, calling for five major reforms to the SSI system:

1) increasing benefits to at least the federal poverty line

2) increasing income limits to encourage work

3) eliminating harmful rules penalizing help from family and friends

4) eliminating marriage penalties

5) increasing asset limits

Any one of these changes would dramatically improve the lives of the 8 million people who rely on SSI, including almost 1 million children with disabilities. It would help ensure that people with disabilities can live with their families and friends in their own communities, with the supports they need.

We have a rare opportunity – right now – to fix the crumbling disability service system by fixing SSI, expanding HCBS, and passing a national paid leave program. We must act on this opportunity!

#CareCantWait

50 years is a long time. Just ask my parents.

A woman sits in a motorized wheelchair with the US Capitol building in the background. She is smiling and wearing glasses, colorful floral pants, and an orange shirt with The Arc's logo that reads "Disability Rights are Human Rights"

The ADA Turns 31

/in , , , /by Pam Katz

Today, we mark 31 years since the passage of the Americans with Disabilities Act (ADA). The Arc is proud of our long history advocating with and for people with intellectual and developmental disabilities (IDD) and working to ensure that their most fundamental rights and the protections guaranteed by the ADA are recognized and fulfilled.

Thelma Green, 61, is a self-advocate in Washington, D.C. who The Arc profiled in a story in 2017 about the importance of Medicaid in her life. On this anniversary of the ADA, Thelma, a wheelchair user, shared reflections on what the landmark law means to her. She was a young woman when the ADA passed in 1990.

“The biggest change is that I got more than once choice for transportation and being able to get around and have stuff more accessible,” she said.

Thelma says before the ADA was passed into law, navigating the community was tough.

“Back then, they didn’t have accessible cabs or Metro Access. It was really difficult,” Thelma tells The Arc.

And she says daily living was more challenging and people treated her with less respect.

“I think it was more difficult before because people weren’t really listening to us. They weren’t taking people with disabilities seriously enough until a family member stepped in,” she explained.

The ADA transformed the country in important ways, changing expectations for the lives of people with disabilities. The law requires accessibility and bans discrimination in almost all private businesses, and has significantly reduced discrimination in state and local government services. The transportation and paratransit provisions have yielded greater mobility and community participation. Employment provisions have been important, for example, providing protections in the hiring process and expanding the use of job accommodations for workers with disabilities. The built environment has tangibly changed based on the requirements of the ADA, for example, ramped building entrances and curb cuts on sidewalks are now common. In major ways, people with disabilities are closer to the goals of equality of opportunity, full participation, independent living, and economic self-sufficiency defined in the law.

But Thelma knows the fight for equity is far from over, and The Arc and our allies are advocating for stronger enforcement of this civil rights law.

“You have to continue on fighting for the same rights that everybody else has. We need to have more accessible places for people with wheelchairs and crutches to make it much easier for them to get it and more accessible buildings,” she said.

On this anniversary, Thelma also wants people to recognize and be sensitive to people who have hidden disabilities that are not always obvious. Across the United States, more than 6 million people have hidden, or invisible disabilities, like autism, sensory disorders, or dyslexia. And, they also entitled to the protection of the ADA.

As we renew our commitment to the ADA, and the charge to eliminate unjustified segregation and exclusion of people with disabilities from American life, The Arc reaffirms our goal to protect against forms of discrimination based on disability, race, sex, gender identity and expression, sexual orientation, national origin, or any other protected status. We will keep fighting to defend the rights and lives of Thelma and all people with disabilities and their families, and advance toward full inclusion for all.

The Arc logo

The Arc and Coalition of Disability and Civil Rights Organizations Urge Court to Allow Britney Spears to Select Her Own Attorney in Conservatorship Case

/in , , , , /by The Arc

Washington, D.C. – The Arc, with a coalition of 25 civil and disability rights organizations, joined an amicus brief filed Monday by the American Civil Liberties Union (ACLU) and the ACLU Foundation of Southern California in support of Britney Spears’ right to select her own attorney for her conservatorship proceedings. The brief also urges the Superior Court of Los Angeles County to ensure Ms. Spears has access to assistance and tools to select her attorney, including Supported Decision-Making.

Ms. Spears is currently under a probate conservatorship and has been represented by a court-appointed attorney for most or all of the 13-year duration of her conservatorship. On June 23, Ms. Spears told the court that she wishes to choose her own attorney. On July 6, Ms. Spears’ court-appointed attorney asked to resign from her conservatorship case.

Often in conservatorships, judges appoint a lawyer to represent a conservatee without allowing the person under conservatorship any say in this decision. The amicus brief argues that the right to choose one’s own attorney is a core element of the Sixth Amendment right to counsel, and people under a conservatorship should be able to retain this right. The brief also provides background to the court on how Supported Decision-Making could be an effective tool for Ms. Spears to use in choosing her own representation.

Supported decision-making allows a person to retain their legal rights while getting support with decision-making from those they choose and trust. Supported Decision-Making does not require court involvement and can be combined with other legal tools, such as powers of attorney and advance health care directives, that promote self-determination and autonomy.

“For many years, The Arc has advocated for the rights of people with intellectual and developmental disabilities to participate to the maximum extent possible in making and executing decisions about themselves and to ensure their civil and human rights are retained and enforced, regardless of conservatorship or guardianship status,” said Peter Berns, CEO of The Arc. “Ms. Spears has the right to self-determination in selecting her own attorney and The Arc will continue to advocate to ensure such rights—for Ms. Spears and the disability community more broadly—are protected in the courts.”

The Arc logo

The Arc Denounces Ruling on Use of Shock on Residents With Disabilities at Judge Rotenberg Educational Center

/in /by Pam Katz

In a stunning reversal, the U.S. Court of Appeals for the D.C. Circuit overturned the Food and Drug Administration’s ban on the use of electric shock devices that has inflicted painful abuse on residents of the Judge Rotenberg Educational Center (JRC) in Canton, Massachusetts for decades. JRC is an institution for children and adults with intellectual and developmental disabilities and mental health issues. The Arc and The Arc of Massachusetts, alongside several disability rights organizations and empowered self-advocates across the country, fought for decades to stop this practice.

By the FDA’s own count, as many as 50 JRC residents wear the shock device. Staff members use remote controls to administer shocks for perceived misbehavior. JRC is the only place in the country that uses the barbaric and inhumane practice, despite substantial evidence that the shocks are painful and traumatizing to residents, and alternative positive behavioral supports exist, and are proven more effective.

“In 2021, we should not still have to fight tooth and nail for people with disabilities to live free from fear and torture. The Arc denounces this ruling, as it strips dignity away from those living at this facility and threatens the civil rights of all people with disabilities. We will continue to fight for the end of this abusive practice,” said Peter Berns, CEO, The Arc.

A mother, father, and two adult sons stand smiling with their arms around each other. They are indoors and have nametags and business clothes on.

The Social Security Law That Keeps Parents Awake at Night

/in , , /by Pam Katz

By Micki, Grassroots Advocate

My husband and I consider ourselves to be informed parents. When our twin sons Zach and KC were diagnosed with intellectual disability in infancy, we tried to learn all we could to be a good mom and dad. We attended educational programs, joined local organizations that focused on families like ours, and did what we thought was best for our sons.

When they reached the age of 18, we were advised to apply for Supplemental Security Income, a federal income program for those 18 and older who are blind, have a disability, or are aged and have very little income. That went without a hitch. A few years later, one of our sons received a letter from Social Security stating that because he had worked for several years in the community, his benefits would switch from SSI to SSDI, Social Security Disability Insurance, a program for those with disabilities who are part-time workers. He qualified because after graduating from high school, he started working as a front-end clerk/bagger at a supermarket. It has always been and because of our son’s disability, will always have to be, part-time work. He has continued to work in this position for 21 years. He is very proud of this achievement. Again, the switch from SSI to SSDI went without us having to complete any paperwork.

During the first few years that he worked, we were still figuring out how much work he could do. On occasion, the store manager wanted him to put in extra hours because another employee called in sick or didn’t show up to work. It was difficult for him to say no, even if he couldn’t really manage the work. We received a few letters from Social Security stating that he earned too much money when that happened. We spoke to someone from Social Security, but nothing was said about him losing out on higher benefits when his parents retired or passed away. Nor was anything explained to us about how much he could earn while still maintaining benefits. Since he continued to receive payments, we assumed the past problems were just that: in the past.

Foolish assumption.

Some 15 years later, in 2016, when my husband turned 66 and applied for Social Security, he requested that Zach and KC receive SSDI benefits as Disabled Adult Children (DAC) under his work record. DAC benefits would be far more generous than our sons’ own benefits because my husband worked for many more years and also earned more.  My husband and I were counting on these benefits to help our sons with their living expenses when we were no longer able to provide financial support. My husband was told that our son who was the front-end clerk would never be able to receive DAC benefits because he earned too much money a few times, occurrences that took place 14 and 15 years ago. Social Security sent us a document showing when his income was too high—it was seven times total, and each time was under $40.

What should we do? Everyone we spoke with was stumped, including attorneys who specialize in denied Social Security Disability applications. With much persistence, we eventually found someone who explained that the things our son had paid for to help him work, like the medication he took to help him focus or the costs of his job coach, could be used to offset the income that exceeded Social Security’s requirements. We learned these are called Impairment Work Related Expenses, IRWEs.

Even though we’d been told that throwing away backup documents from tax filings after seven years was safe, we never did. Luckily, we had the receipts showing those costs which filled a box large enough for a 10-ream case of paper. We took it to the local Social Security office and requested that they review the materials and reconsider our son’s denial of DAC. The Social Security employee was taken aback by the number of documents in the box. He said he wasn’t allowed to work overtime and had no idea how long it would take him to go through it all!

After several nerve-wracking months, we heard from Social Security. They reversed their decision. Our son was approved as a DAC!

There are many families like ours who had and/or continue to experience a similar nightmare. Many of our loved ones work part-time in jobs with fluctuating hours which results in income varying from one month to another. Countless families don’t know about IRWEs or understand the complex rules of Social Security. We are all understandably terrified of doing anything that might put our children’s future benefits in jeopardy. Some find it easier to have their family member not work at all, thereby isolating them from the community and depriving them of self-worth.

The current law is a huge disincentive to work and it’s just too complicated.

Our son is now living by himself in the community. Being self-sufficient means the world to him. His DAC benefits along with his limited earnings cover his expenses, such as rent, utilities, groceries, etc. Without the SSDI DAC benefits, he would no longer be able to live independently in the community.

Parents of adults with intellectual disabilities want the assurance that their loved ones will continue to have meaningful lives after they’re gone. Knowing that their adult children can work and maintain DAC benefits is one critical way of guaranteeing that—the law needs to change.

 

Find out how you can help Micki’s family and others in the same position.

Learn more and act now!

 

The United States Capitol Building

Better Care Better Jobs Act Will Make Huge Investment in Disability Services

/in , , , , , /by Pam Katz

The system that provides supports and services for people with intellectual and developmental disabilities (IDD) and their families has fallen far short of their needs for decades, and the COVID-19 pandemic exposed and worsened this reality.

The Better Care Better Jobs Act (BCBJA) introduced today will make a huge investment necessary to change disability services into the future. This bill puts into motion the proposals that were included in President Biden’s American Jobs Plan, which prioritizes the crumbling care infrastructure in this country and recognizes the importance of fixing it and building back for the future.

“Every day, people with disabilities are waiting for their lives to start and often going without the supports they need to achieve their goals. Families that want a different life than an institution or nursing home are forced to navigate a patchwork system of supports with waits and no guarantees. Family members are often forced to either quit or limit their job choices to provide care due to lack of services. And the direct care workforce is underpaid and undervalued.

“We are desperately overdue for a huge investment in disability services. The Better Care Better Jobs Act introduced today will be a game-changer and must be enacted quickly for the disability community to be a part of our economic recovery from this disastrous pandemic,” said Peter Berns, CEO, The Arc.

When the BCBJA becomes law, it will provide huge funding enhancements to states which focus on improving and expanding their Medicaid home and community-based services (HCBS) delivery system. The bill would provide funding to expand access to services for people who are currently on waiting lists for these vital services, and create more and better direct care jobs for the paid workforce that provides these services.

Learn more about how HCBS are vitally important to the lives of people with IDD and their families.