Dozens of small people icons forming a map of the United States

Change Your World: Kick-Start Your Disability Advocacy With The Arc

/in , /by Pam Katz

For nearly 75 years, The Arc has been on the frontlines of the disability advocacy movement, fighting for the issues that matter most to people with disabilities and their families. The Arc is a grassroots organization with nearly 600 state and local chapters, all pushing for the full inclusion of people with disabilities on the federal, state, and local levels.

Every day, people with disabilities and allies across the country—just like you—are advocating to build a more inclusive world. And with everything that is on the line right now, we need every person who cares about disability rights and equality to step up and join our fight for inclusion for future generations. We need YOU!

So, what are you waiting for? You can join us RIGHT NOW and become a fierce disability activist! Here’s how:

  1. Find out who your members of Congress are: The Arc provides an easy way to see who your Senators and Representatives are. Head on over to our Action Center and enter your zip code in the Find Your Elected Official box on the righthand side. Once you know who your members of Congress are, visit their website and review their priority issue areas. Using this knowledge, you can tell them how important it is to include disability issues in legislative discussions.
  2. Connect with your state and local chapters of The Arc: Discover who your state and/or local chapters of The Arc are and where they are located. Visit their website to learn how you can get involved.
  3. Follow your members of Congress on social media: When Congress is in session, you can follow along with your members’ current legislative actions on places like Twitter—even if you don’t have an account! When they work on an issue that matters to you and/or aligns with The Arc’s Action Alerts, this is the moment when your outreach will make the greatest impact. Get in touch with them directly or through The Arc’s Action Center to share why they should support a position that benefits the disability community.
  4. Visit The Arc’s Action Center: The Arc’s Action Center (thearcwebdev.wpengine.com/action) houses all The Arc’s current action alerts. Clicking on the alert you are interested in will lead you to a page with more information where you can send a note to your members of Congress showing your support. You can use our prefilled template or write your own. Once you have filled in your contact information and completed your submission, click the button at the bottom to submit your note.

Now that you are equipped with The Arc’s four key advocacy steps, get out there and start advocating for the disability community! Remember, take pictures of your advocacy when possible and share them on social media. Don’t forget to tag The Arc of the United States in your posts.

We can’t wait to see you out there!

 

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

For Tyson, Marriage Changed Everything – Including His SSI

/in , , , /by Pam Katz

By Tyson from North Carolina

Married people with disabilities often experience penalties that force the couple to give up necessary benefits. Congress must address marriage penalties so everyone has the chance to marry without endangering the key supports they need to live in the community. Tyson is one of the many people with disabilities who have experienced this penalty, and he shares his experience below.

I have been getting Supplemental Security Income (SSI) since I was 19 years old. I’m now 46. These benefits are important to me; they help me pay for things I need, like rent and food. I have always been vigilant to report my earnings and document everything Social Security asked of me.

In 2021, I got married to the love of my life. My wife works for our local school system and is a wonderful partner. I didn’t know, though, that getting married would so greatly impact my SSI.

In late 2021, I got a call from Social Security. It was time to do the regular review, where Social Security asks the same questions over and over to make sure I am sharing all the information and earnings I have. During the call, I shared that I got married, gave them the date and information, and shared my wife’s income information.

Because I got married, I was told that my SSI would be cut from about $800 a month to $500. This was because of my wife’s income. But SSI is my only source of income, and it felt like I was punished for getting married. At the same time, I also found out my rent would increase by $200 a month. So, my wife and I had to do more with even less.

The Social Security office also told me I could get a Social Security Disability Insurance (SSDI) benefit through my dad’s work record. I spent hours tracking down school records to make sure Social Security had what they needed. Several times, people who worked at Social Security told me I would get SSDI. But, in the end, they rejected my application. I felt like I was lied to and that my time was wasted.

I do my best to pay my bills and live the best life I can. But I am trapped in poverty.

I can’t help that I have a disability, and I want to do more to contribute to our household and have planned to get a part-time job. I am worried that doing this will make me lose my SSI and other benefits. My wife and I have thought about moving to another state to be near other family members, but that may cause me to lose my other benefits, too.

I don’t know what to do, but I know that people should not have to live like this or be punished for marrying the person they love.

A selfie of a father and his teenage son, sitting in a car and smiling. The father is wearing sunglasses.

School Should Be a Safe Place for Students, but Isaac Was Assaulted

/in , /by Pam Katz

A selfie of a father and his teenage son, sitting in a car and smiling. The father is wearing sunglasses.Isaac has autism and mental health disabilities. Isaac sometimes gets very focused on certain things and struggles to adjust or focus on other things. To help him in school, a 504 plan was created so that teachers and other staff at the school would know how to support and redirect him safely.

When Isaac was 15 years old, that plan failed when he was put in a chokehold at his school by the school resource officer. Now 22, Isaac and his dad, John, shared with us about the incident and how it impacted Isaac’s school life.

Tell us about the choking incident. What happened?

ISAAC: I was in band class. Our school called students to the gym for a sex education class. The teachers told us you didn’t have to go if you didn’t want to, or if you signed a paper saying you weren’t going to go. I told them I didn’t want to go, but they still forced me to go. Since I didn’t want to be in the room, I went to the other side of the gym to nap until the class was over.

One of the teachers didn’t like that I was napping and ignoring the class, and they asked me which teacher I had for the period. I didn’t answer because I felt like the teacher was trying to get me in trouble, even though I had not done anything wrong. When I refused to respond, they called in two administrators. The administrators told me to give them my backpack and search through it. I refused to give it to them, as they did not have the right to take my things for no reason. They then tried to take my backpack from me forcefully. Finally, the school resource officer got involved. He took my bag from me.

I was still trying to get my bag back from them. I was not fighting back but resisting the situation. The officer forced me to the ground. He stood side-by-side with me, placed his left leg in front of both of my legs, and lifted his leg backward. This swept my legs from underneath me and caused me to land on my stomach. Then, since I was still resisting and trying to get back up, he got on top of me and started to choke me. I stopped resisting after about 10 seconds because I did not want to black out. After that, he let me go and began searching my backpack because he claimed that the administrators thought I had drugs or a bomb in my bag. I obviously did not have anything like that in there.

What happened after the incident?

ISAAC: The afternoon after the incident, the school told my mom that they had wanted to search my backpack, and I resisted this. They did not share that I was put in a chokehold. My mom told the school that I had a 504 plan that describes how to support me if I resist what the staff asks me to do; however, the administrators explained that they had so many kids with 504 plans that they could not have possibly known which students do or don’t have plans—or be expected to follow them in the heat of the moment.

Later that week, the school resource officer told me he was sorry for the run-in, but did not acknowledge that he or the school may have been in the wrong. He did at least try to get to know me better and have a civil relationship from that point on.

No one from the school ever told my mom or dad that I was in a chokehold or taken down by the school resource officer.

I didn’t tell them either. I was new to the school. I am also not a tall guy and, at the time, was 106 pounds. I was a new, short, small kid that no one knew. I didn’t want to be a target for bullying. People at my new school were already wary of me before the incident because of how I reacted to things and because I always wore a hood because I was always cold. After the incident, a rumor started that the officer had tackled me.

Afterward, people feared me. People began to worry and ask whether I would shoot up the school. I was okay with people being scared of me because I was just happy that people were not trying to bother me or bully me. And I had friends who knew me. However, I was portrayed as the bad guy by classmates and at school.

John, how did you and your wife discover the incident?

JOHN: I was at the high school several months later to speak to a class at the teacher’s invitation. When I was introduced, it was mentioned that I was Isaac’s father. A student at the side of the room said, “I know that dude. He’s crazy!” After that, I asked Isaac if something happened.

As a parent, I was extremely disturbed. Nobody likes to hear that their child is bullied or being targeted. I had a few experiences with bullying as a child, and no one wants that.

I’m also a professional disability advocate. At the time, I had also just watched the reports around Ethan Saylor, who was tackled and suffocated to death. There were also some reports of teachers being tough and not accommodating to students with disabilities because they don’t understand how to help them.

When my wife and I discovered Isaac was put in a chokehold, it was months later. At the time, there was not much more we could do but try to fix the rules that caused the incident. But that’s not enough—changing the rules does not change people’s attitudes.

When people think of autism, they see Rain Man or The Good Doctor. With Isaac, you would not know he had autism unless you knew him very well. He does not present how people typically think of someone with autism. As a result, he sometimes gets pushed around more than other kids.

The incident should never have happened. For the administrators to talk it down or brush it off without informing us is the most disturbing thing. He was assaulted—and no one bothered to tell us about it.

What do you want other people to know about the use of restraint and seclusion?

JOHN: I want them to know the same thing my father taught me: there’s never a reason to resort to violence. I have never yet seen, even in the worst situations, a need to escalate to violence because people are not responding clearly and immediately to demands. There are ways to get the desired result, but sometimes, you have to dig a little deeper. There are always other options.

What happened could have been averted if they had gotten to know my son. How many people use seclusion and restraint instead of getting to know the kids they support? Educators need a better sense of what is happening and how to help the kids they educate. In our home state of North Carolina, educators only need eight hours of training to work in a classroom for kids with disabilities. How can you expertly support kids with only eight hours of training? Certainly, more could be done to prepare teachers.

ISAAC: I want other kids with disabilities to know the same thing my father taught me: there’s never a reason to resort to violence. And that they should wait until your parents get there to speak with the school. Quite literally, your parents are your lawyer. Teachers won’t always listen to you. It would be best to have your folks with you to argue for you and advocate on your behalf. To parents, you may be angry about an incident, but you still need to be civil and work with the school because otherwise, the school won’t help your child; they may suspend or expel them instead. You must do your best to be civil and willing to work together to keep your student at school.

JOHN: I’m proud of my son for what he just said. Previously, I spent time as a trustee on a school board. People would ask over and over what school is the best for kids with disabilities. The critical difference in outcomes for kids with or without disabilities is parents being involved. They know who we are and that we are not just angry parents but also active and involved in the school. It changes the educators’ attitudes, and they see our child more as a person. They become more willing to engage with parents and intervene before things blow up.

Parents should also know what their and their kids’ rights are and be able to call people out when needed. Isaac is my fifth child. I know our rights and how to advocate with him because I made mistakes and learned with my previous children. Sometimes, administrators will say things that do not respect the rights of kids and parents. They may push boundaries that they should not do so and rely on parents not to know their rights. It can be intimidating. Parents must know their and their kids’ rights and advocate.

The Arc logo

Get Ready for Medicaid Renewals in 2023

/in , , /by Pam Katz

As COVID-19 rapidly spread across the U.S. in March 2020, Congress declared a public health emergency and passed legislation that gave states more money for Medicaid if they met certain requirements. One of the main requirements was that people would be able to keep their Medicaid health care during the COVID-19 public health emergency.

As a result of recent legislation, the continuous enrollment requirement will end in early 2023 and states will soon be restarting Medicaid eligibility reviews. For many with disabilities, this means that they may lose critical Medicaid services and supports. Based on estimates, up to 15 million people could lose their current Medicaid coverage.

States may start the renewal process as early as February 1, 2023. Fortunately, there are steps you can take to be ready:

  1. Verify that your contact information is updated. Make sure your state Medicaid agency has your current mailing address, phone number, email, or other contact information so they can easily contact you about your Medicaid coverage.
  2. Check your mail regularly. The state Medicaid agency will mail you a letter about the status of your Medicaid coverage. This letter will also let you know if you need to complete a renewal form to see if you still qualify for Medicaid.
  3. Complete and send in your renewal form (if you get one). Fill out the form and return it to your Medicaid agency to help avoid a gap in your Medicaid.
  4. If your Medicaid coverage has ended, visit HealthCare.gov to find an affordable, comprehensive health plan.

For more information, you can visit Medicaid.gov/renewals.

The Arc logo

Using Medicaid Is Complicated: That Hurts People With Disabilities

/in /by The Arc

Medicaid is the nation’s primary health insurance program for people with disabilities, but it is so much more than health care. For individuals with disabilities and their families, Medicaid also funds vital supports to keep them in their communities.

People with disabilities who are eligible for Medicaid often live in or near poverty. They rely on Medicaid for stability, support, and services. However, Medicaid can be extremely challenging to navigate—requiring people to spend significant time and effort learning how the system works, how to complete all of the necessary paperwork, and waiting for appointments to access critical care and services. If people are unable to navigate these challenges, they risk losing essential care, services, and stability.

In 2022, The Arc and its chapters asked families nationwide about their challenges navigating Medicaid.

Terri, who has a child with Down syndrome, notes that complications with the Medicaid application process have meant her family has “missed out on eight years of having co-pays covered, on financial support for the diapers her son wore until he was seven, and on assistive devices to help him walk and talk. Despite being well-educated, I found the paperwork really daunting,” says Terri. “The cynic in me wondered if it was complicated by design, to frustrate people from applying.”

Frances, a self-advocate from Colorado, has received Medicaid for over 40 years. Still, she encounters many difficulties in navigating the Medicaid system. According to Frances, “It is frustrating because I do not know what my co-pay is on a doctor visit and I will receive a bill that I do not understand. When I call to ask for more information, it is often hard to talk to a person and get a call back when I leave a message.”

Many people on Medicaid are required to reapply or prove they are still eligible for services on a yearly or even semi-annual basis. For Frances, this is the biggest barrier. “I have to work with the Department of Human Services and submit proof of housing and income,” she says. “But because they are not meeting with people in person, I have to fax these documents, and it is very difficult to get a hold of someone at the office to do this. I wish I could submit this paperwork in person.”

Monique, a disability professional from California, recounts the difficulties of trying to get a specialized wheelchair through the Medicaid system for an individual with Parkinson’s disease. Monique notes that it took “multiple months to get the process started.” This long wait time meant the person with a disability had to use a rented wheelchair “which was not adequate for [him] and his staff.” By the time the chair arrived over a year later, the man was already in a nursing home. “[He] died a week later,” says Monique. “[He] never even sat in his wheelchair or was able to see it.”

In the coming months, navigating Medicaid will likely get even more complicated. There have been special rules in place to protect people from losing Medicaid during the COVID-19 pandemic. In April 2023, these rules will end, and states will likely begin kicking millions of people off Medicaid.

Accessing Medicaid should be made easier, not harder. The Arc will continue to advocate to strengthen and protect Medicaid for people with disabilities and their families so that everyone can navigate it and access this vital support.

The United States Capitol Building

Congress’s End-of-Year Legislation Includes Disability Priorities and Leaves Unfinished Business

/in , , , /by Pam Katz

As Congress wrapped its work for the year, disability advocates pushed for progress on a variety of priorities. Congress has now passed a package that includes some important victories but leaves others out.

One of the biggest wins is an extension of the Money Follows the Person program, which helps people transition out of institutions and nursing homes, and back to their communities.

The Money Follows the Person (MFP) program provides grants to states to transition Medicaid participants from institutions into the community. MFP has moved more than 107,000 seniors and individuals with disabilities out of these institutions and has helped 43 states and the District of Columbia improve access to home and community-based services (HCBS). Medicaid requires states to provide care in nursing homes, but HCBS is optional. The MFP program is then critical because it incentivizes investment in HCBS by providing federal funding for transitional services for individuals who wish to leave a nursing home or other institution. Congress has now extended it through 2027.

“This program makes it possible for more people with disabilities to change their lives, on their own terms. And it proves what people with disabilities and their families know – the opportunities for a life in the community, with the services to make it happen, are game changers. We will continue to relentlessly advocate for major investments in home and community-based services,” said Peter Berns, CEO, The Arc.

Other victories in the bill include:

  • Creating a path for a ban on the use of electric shock devices for behavior modification on people with intellectual and developmental disabilities (IDD). The brutal treatment is widely recognized as cruel, harmful, and ineffective. Yet it’s still used at one institution in Massachusetts.
  • Extending the requirement that states apply Medicaid’s spousal impoverishment protections to HCBS through 2027. A spouse shouldn’t have to live in poverty for their partner to receive services in the community.
  • Expanding ABLE account eligibility. ABLE accounts are tax-advantaged savings accounts for individuals with disabilities. This legislation increases the age of disability onset to access an ABLE account from prior to age 26 to age 46, starting in 2026.

Congress’s action or inaction on certain issues creates unfinished business for The Arc and our advocates to rally around in 2023, including:

  • No action to increase to SSI’s asset limits. Right now, people who get SSI can only have $2,000 in assets, and married couples can only have $3,000.
  • Congress is ending important eligibility and funding improvements tied to the COVID-19 public health emergency. This means states may begin to remove ineligible people from their program starting April 1.

“It’s very disappointing that Congress didn’t take the opportunity to help lift people with disabilities out of poverty, by simply bringing the SSI asset limit out of the 1980s into this century. We will continue to push for this change in the New Year,” said Berns.

The Arc logo

Lack of Medicaid Portability Restricts Life Choices for Zoe and Other Americans With Disabilities

/in /by The Arc

By Zoe in Colorado

I was born with spinal muscular atrophy, a developmental neuromuscular disease that affects every muscle in my body. My entire life, I’ve relied on someone else to do even the most basic care for me. At some point in my childhood, I was placed on a Medicaid waiver in Colorado. It allowed me access to specialized care, like home health, which wasn’t covered by my parents’ primary insurance.

When I was in the third grade, we moved states. I remember my mom spending time on the phone and filling out applications that took almost a year to complete to get me started on the new state’s Medicaid program. When we moved back to Colorado, I watched her do the same thing again, over months, until I was finally placed on a waiver again.

At the time, I didn’t realize what all of that meant. It wasn’t until I was a junior in high school, visiting colleges around the country and being recruited into top-tier honors programs, that I realized I was facing an even bigger barrier than my disability itself. Medicaid, which I now rely on daily, is nontransferable between states. It is not portable. In addition, not all states have the same programs and services to allow an individual to live independently.

Because I need 24-hour assistance that rivals the care level in an assisted living facility, home health care is necessary for me to live independently within my community. I knew that I wanted to go to college, and I knew that I wanted to live in a dorm. But as my acceptance letters began to roll in my senior year of high school, it became apparent that, unlike my peers, my choices were going to be limited—unless, of course, I wanted my mom to move into my dorm and attend classes with me. Though I love her, I knew that was not going to work.

Reluctantly, after research, calls, and dead ends, I turned down prestigious offers, including the rigorous University of California in Los Angeles. I was both ecstatic and heartbroken, knowing I was accepted in a pool of 111,000 applicants at a beautiful school, but knowing the challenges I would face if I relocated to California.

Though it became a different journey, I opted to stay in Colorado, where I am now a fourth-year honors student at the University of Denver. I live on campus independently with a team of caregivers paid through a Medicaid waiver.

Although my story is a happy one for now, the struggle remains the same. While my friends jumped around the country over the summers taking internships in their fields of study, I remained “stuck” in Colorado because I simply can’t pack up my medical equipment and caregivers and hop over to a different state. This reality remains as I look at graduate programs, forcing me to seriously consider online programs since my area of study isn’t offered locally. If I do move, for either school or a career opportunity, the consequences of a gap in Medicaid coverage are too great to risk.

I imagine not having health care coverage for months on end while I try to navigate a new state system on top of moving to a new city and state. My $26,000 medicine? My $56,000 power wheelchair? My monthly allotment of $20,000 to pay caregivers for 24-hour care? POOF! Nothing would be covered. My ventilator rental that I rely on to breathe at night? I’m not trying to be dramatic, but the truth is, I would slowly die without it. Without the drug that is keeping me stable, my body would further deteriorate.

I am privileged to have parents with the financial means to sell their home and transfer their jobs if necessary. But without those natural supports, I would never be able to move. Ever. Because I can’t simply show up and have caregivers and medical providers and Medicaid and a pharmacy and a durable medical equipment company and… and… and…

How to maintain independence is something not every 21-year-old has to think of, but it’s something that I will always have to consider when making life decisions. Until Medicaid offers a portability option, disabled Americans like me will always be restricted in their life choices in ways that our able-bodied peers never will be.

The Arc logo

National Disability Rights Groups File Amicus in Perez v. Sturgis

/in , , , /by The Arc

This week, The Arc of the United States joined eleven national disability rights organizations in filing an amicus brief in the U.S. Supreme Court. The amici are asking the U.S. Supreme Court to protect students with disabilities and ensure that families of these students are able to pursue the full range of civil rights remedies directly in federal court. The case, Perez v. Sturgis Public Schools, is scheduled to be heard on January 18, 2023.

“Students with disabilities already face inordinate obstacles in getting the education they need to build their future,” said Shira Wakschlag, Senior Director of Legal Advocacy and General Counsel at The Arc. “From inadequate accommodations and low expectations to restraint, seclusion and poor support, parents and children are too often forced to become experts in self-advocacy and the law in order to obtain services and supports they are entitled to. If the lower court decision is allowed to stand, it will cause further harm to students with disabilities who already experience segregation and discrimination in school and will burden parents by forcing them to jump through futile and unnecessary hoops in order to pursue non-IDEA civil rights claims in federal court.”

In Perez v. Sturgis Public Schools, the plaintiff Miguel Perez, a deaf individual, was denied a sign language interpreter for 12 years while attending Sturgis Public Schools, which ultimately impacted his ability to read, write, and graduate. The Perez family filed a due process complaint alleging violations of the Individuals with Disabilities Education Act (IDEA) and the Americans with Disabilities Act (ADA) and the parties settled the IDEA claims. The ADA claims were dismissed since these claims cannot be heard in administrative proceedings, so the family brought the ADA claims in federal court and sought compensatory damages. The lower court held that Perez gave up his right to sue under the ADA in federal court when he settled the IDEA claims because settlement does not constitute exhaustion of administrative remedies. Yet both claims are vital in his fight against years of discrimination and neglect – the IDEA claim addressed the school’s failure to provide the education and services he needed to learn, and the ADA claim addresses his unequal access to education and compensatory damages for his emotional distress resulting from that discrimination. If the U.S. Supreme Court does not rule in favor of the plaintiff, students with disabilities and their families will have to turn down full IDEA settlements, forgoing their ability to immediately receive a ‘free appropriate public education,’ in order to preserve their distinct non-IDEA claims.

###

About The Arc: The Arc advocates for and serves people with intellectual and developmental disabilities (IDD), including Down syndrome, autism, fetal alcohol spectrum disorders, cerebral palsy, and other diagnoses. The Arc has a network of nearly 600 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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

Media Contact: Jackie Dilworth, Director of Communications, dilworth@thearcwebdev.wpengine.com

Roll of red, white, and blue "I voted" stickers on a white table

You Have the Power: Go Vote!

/in , , /by The Arc

It’s almost time to cast your vote in the midterm election. Are you ready?

According to the Centers for Disease Control and Prevention, 1 in 4 adults have a disability. Any cohort of this magnitude carries significant political power, especially during a midterm election year such as 2022.

People with disabilities and their family members recognize that their votes help elect the officials who will run the government, make laws, decide where government money gets spent, and much more. All these decisions have a significant impact on the lives of people with disabilities, their families, and the workforce that supports them.

The Center for American Progress found that nearly 62% of voters with disabilities cast a ballot in the November 2020 election, compared to just 56% in 2016. This increase is in spite of the fact that people with disabilities continue to face barriers to casting their ballot, such as complex mail-in voting procedures, inaccessible voting locations, inexperienced polling workers, guardianship laws, transportation barriers, and more.

This fall, the disability community and their supporters have another opportunity to make their voices heard through their vote. In this current midterm election cycle, all 435 seats in the House of Representatives and 35 of the 100 seats in the Senate are on the ballot.  Additionally, eligible voters in 36 states will vote to install new governors. That’s a lot of opportunity for our community to shape the future of our country by simply going to the polls.

To help you navigate this election season, The Arc has created several resources and put together essential information about voting. At thearcwebdev.wpengine.com/vote you can find the following materials in plain language in both English and Spanish:

  • The Arc’s Disability Voting Guide
  • The Election & You: Thinking About Disability
  • Sample Questions for Candidates
LEARN MORE

You can also check out The Arc’s Civic Action Center to find your state’s upcoming election information, your closest polling location, and verify if you are registered to vote (make sure you know your states deadline!).

Let’s keep the momentum going and show our civic power again this election season. Take the first step and pledge to vote today!

A woman standing on a deck with a park int h

For Lauren, Increasing the SSI Asset Limit Makes Her Dreams More Achievable

/in /by The Arc

Lauren has a bright future. She graduated from her Indiana high school at the height of the COVID-19 pandemic, but she didn’t let that stop her from advancing her education. Currently, she is working towards an associate degree in animal science, her long-time passion. With only one class remaining, she is set to get her degree this year.

Currently, Lauren is living at home with her parents while she works part-time at a doggy daycare. As she has watched her siblings move out and settle into adult life, she has also been making plans of her own. She dreams of pursuing a veterinary technician degree, working in a veterinary clinic, living in her own home, having her own car to get around her rural Indiana community, spending time in nature, and even going on the occasional vacation.

Lauren’s plans are not uncommon, but they are difficult to achieve right now. Lauren receives Supplemental Security Insurance (SSI). SSI currently provides critical support to Lauren and nearly 8 million other adults and children with disabilities and older Americans. SSI helps people pay for their homes and food to eat. In most states, receiving SSI also means that people can get Medicaid. This is important because only Medicaid provides the services and supports many people with disabilities rely on.

Right now, outdated rules prevent people who get SSI from saving money, forcing them to live in poverty. Single people like Lauren who get SSI can only have $2,000 in assets and married people can only have $3,000 combined. Assets include money in bank accounts, retirement accounts, and other savings. In practice, because bank accounts often require a minimum balance, there is less money that can be used if needed. It also means that Lauren cannot save for a down payment for a home or a reliable car.

Lauren wants to be independent and achieve her goals. Even though she is young, she wants to plan for her retirement and make sure she has enough money for the future. The current SSI asset limit causes constant challenges and makes saving for everyday life and achieving her dreams feel out of reach.

A woman with long brown hair stands on a deck overlooking grass down below. She is wearing a grey t-shirt and jeans.“I have to constantly monitor the account to make sure I am not working too much so that I can keep all my benefits. The support is what makes it possible for me to work, but if I do work then I could lose the support. It makes it impossible to improve and try new things. I have not gone over the limit, but the low level does make it impossible to be responsible and save for larger purchases like a car or home of my own. I am stuck as a renter or with poor-quality transportation, and I am not able to plan for the future, like retirement—things that other people my age are able to do.”

Congress is currently considering a bill that would raise the amount of savings a person on SSI could keep. This is huge. It would be the first time in over 30 years that this limit would change. It would raise the limit from $2,000 to $10,000 for single people like Lauren, and it would increase from $3,000 to $20,000 for married couples who get SSI.

For Lauren, changing the asset limit would create new possibilities to enact her plans and achieve her dreams. She could save for a car to get around her rural community and set aside a little nest egg in case something unexpected happens.

 

Get Involved

Help Lauren and the 8 million others nationwide on SSI save for their future.

Tell your members of Congress to raise the savings limit today!