A person standing at a voting booth. Next to them is any empty voting station.

Lawsuit Filed Challenging New Texas Law Targeting Voting Rights

/in , , , /by Pam Katz

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

/in , , /by Pam Katz

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

/in , , /by Pam Katz

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

/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.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

/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.

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

/in , /by The Arc

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!

/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.