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

A close up of a speaker at a podium.

The Impact of Student Loan Debt Forgiveness for the Disability Community

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.

A crowd of graduating students against a black backdrop. They are all raising their right arm and turning the tassels on their caps to the other side.

New U.S. Department of Education Regulation Provides Relief to People With Disabilities

Washington, D.C. – The Arc is pleased that the U.S. Department of Education announced a major step in removing barriers in the path of people with disabilities who pursue an education and career goals. The Arc advocated relentlessly for these changes in response to the outcry from people with disabilities across the country.

The Department’s new regulation will provide important relief to more than 323,000 people with disabilities who have outstanding student loans. These borrowers will receive more than $5.8 billion in automatic student loan forgiveness, without having to jump through bureaucratic barriers to access loan forgiveness. The new policy removes these barriers by automating the process and eliminating burdensome paperwork.

“We are encouraged that The Department of Education is implementing recommendations made by The Arc and other advocates to better serve people with disabilities and get rid of these obstacles to financial stability and achieving goals. This is also a huge step toward making sure that people with disabilities do not risk losing their Social Security benefits if they cannot navigate the bureaucratic discharge process. This change helps ensure that government systems work for people with disabilities,” said Peter Berns, Chief Executive Officer of The Arc of the U.S.

The United States Capitol Building

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

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!


The Arc logo

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

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

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!


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