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.

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.

A man lays in a hospital bed as an out of focus doctor in the foreground holds a chart

The Arc’s Statement on the U.S. Supreme Court’s Ruling in California v. Texas

/in , , , , /by The Arc

“The Arc is relieved that the U.S. Supreme Court has once again upheld the Affordable Care Act (ACA) and today dismissed the latest attack on the law. The ACA is critical to the lives of people with disabilities and low-income Americans. Without it, millions of adults and children would lose their health coverage, or it would become unaffordable, during an unprecedented time of health risk and uncertainty, as well as economic instability.

“The importance of the ACA is underscored by the pandemic. The public health crisis is a glaring reminder of the inequities in health care and discrimination faced by people with disabilities, other groups that are marginalized, and people holding multiple marginalized identities.

“The Arc and our allies have fought relentlessly to defend the ACA from these repeated attempts to undermine the law and we will continue to fight to preserve this lifeline for people with disabilities. In 2020, The Arc, with a coalition of disability and civil rights organizations, joined an amicus brief filed in the U.S. Supreme Court urging the court to uphold the ACA in its entirety. The Arc also provided an amicus brief in support of upholding the law before the Fifth Circuit Court of Appeals in 2019.

“This uplifting moment is about the millions of people with disabilities, their families, and the direct support workforce that rely on the ACA for access to health coverage for preventative care, to maintain good health, and secure vital medical treatment. This moment is about protecting them from discrimination. The lives of people with disabilities have value,” said Peter Berns, CEO of The Arc of the United States.

The Arc logo

The Arc Encouraged by Proposal for Huge Investment in Disability Services and Direct Care Workers

/in , , , , , /by The Arc

Washington, D.C. – For years, the service system that people with intellectual and development disabilities (IDD) and their families rely on has fallen far short of meeting their needs. The COVID-19 pandemic has magnified this problem and exposed the cracks and gaps in the care infrastructure when it comes to supporting people with disabilities. The Arc is encouraged by the Biden Administration’s announcement today that The American Jobs Plan includes a $400 billion investment to support and grow the direct care workforce, expand service delivery and eliminate waiting lists so that people with disabilities and unpaid family caregivers can return to the economy. This investment is long overdue, and like crumbling roads and bridges, the Administration recognizes that the home and community-based service (HCBS) system, a central part of the care infrastructure, needs and deserves the same critical investments. Now, Congress must act.

Growing the direct care workforce, expanding access to services, and supporting family caregivers are key to our economic recovery. The Administration’s plan to provide more funding for HCBS, create jobs and increase wages and benefits for direct care workers addresses the rising level of need for these services. It also targets the longstanding inequities experienced by the direct care workforce that were made worse by the pandemic. These direct care workers are mostly women of color; they are denied a living wage due to underfunding of the Medicaid HCBS system that pays their wages. A well paid, well trained workforce that can grow with and meet the increasing need is critical to recovery and to providing people with disabilities and their families quality supports and services they need and want to receive in their homes and community. The Arc was also thrilled to see the plan include a permanent reauthorization of the Money Follows the Person program, a Federal program that supports people with disabilities and aging adults to move out of large congregate settings and back to their homes and communities. The Arc has been advocating for all of these advances for years.

We are pleased with the Administration’s proposal for this major investment in and recognition of the value of people with disabilities, their families, and the direct care workforce. Congress must now act to make this important investment in the service delivery system and the direct care workforce a reality by including these provisions in any new infrastructure and recovery legislation.

“As the largest disability rights organization in the country, The Arc is pleased to see the value of people with disabilities, family caregivers, and direct support professionals recognized and upheld in the Administration’s bold American Jobs Plan.  The proposal is a welcome first step and we will not rest until the needs of people with IDD and the direct support workforce are fully addressed,” said Peter Berns, CEO of The Arc of the United States.