The US Capitol in Washington, DC

How the Government Shutdown Could Impact People With Disabilities

/in /by The Arc

If Congress fails to reach a deal to fund the federal government by September 30, the government will shut down, which means federal agencies will cease non-essential operations until a deal is reached. We want you to be fully informed about how the looming government shutdown could impact you!

Many people with disabilities rely on a range of public programs, such as Social Security, Medicaid, Medicare, Supplemental Nutritional Assistance Programs (SNAP), and others that support their daily needs, health, and independence. They also benefit from programs that provide housing assistance, job training, special education, childcare, and developmental disability programs for supports and services. What’s more, many federal agencies enforce critical laws against disability discrimination, including the Americans with Disabilities Act.

Here’s what we want you to know. Social Security and Supplemental Security Income (SSI) payments will continue during a shutdown. While these critical needs will continue to be met, a prolonged shutdown could exacerbate ongoing customer service issues created by the underfunding of the Social Security Administration (SSA). Many people with disabilities need SSA’s support in navigating benefits and already endure long wait times for disability determinations.

Many of the other programs that people with disabilities rely on are administered by state governments, with critical oversight and administration conducted by the federal government. Currently, all 90 million Medicaid beneficiaries must go through a renewal process following the end of the COVID-19 public health emergency. According to the Kaiser Family Foundation, nearly three-quarters of all people losing Medicaid had their coverage terminated for procedural reasons. CMS recently took the major step of making 30 states pause their renewal process for failing to comply with federal law. The lack of this critical federal oversight could result in many more people with disabilities unjustly losing their Medicaid benefits. Make sure you don’t lose yours.

There is also considerable concern about the impact of the childcare funding crisis resulting in tens of thousands of childcare centers potentially closing and millions of kids potentially losing this critical avenue for early development. This is happening because of the expiration of pandemic emergency relief funds that were used to support struggling daycare centers. Families already experience significant hardship finding childcare options for kids with disabilities, which could worsen without action by Congress.

Looking to the future, a government shutdown raises the potential for additional cuts to government funding in order to reach a deal to reopen. The agreement to stop a default in May 2023 already set new caps on spending for FY 2024 and 2025. Those agreed-upon caps undermine critical programs and services. The Social Security Administration, for example, is facing a customer service crisis and programs like the Individuals with Disabilities Education Act (IDEA), which ensures students with a disability are given a free appropriate public education, have never been fully funded.

The reality is that funding for programs for people with disabilities needs to be significantly expanded, not cut. A government shutdown creates the political environment for cuts, going in the wrong direction for people with disabilities and their families. If that happens, you can expect that The Arc will use its power and influence to fight back.

Tayone sits at his desk in his office. There is a computer monitor and keyboard on the desk. He is using the keyboard while looking up and smiling.

Tayone’s Struggle to Find Employers Who See Past His Disability

/in /by The Arc

Tayone sits at his desk in his office. There is a computer monitor and keyboard on the desk. He is using the keyboard while looking up and smiling.Tayone Miller is a full-time Computer Analyst with Charles County Public Schools (CCPS), bringing nearly a decade of experience in developing, managing, and improving information technology. It’s a career he’s always dreamed of. “Technology helps people throughout their lives,” he shares. “I wanted a career that would be everlasting, and Computer Information Systems (CIS) was the right fit for me.”

Tayone was also born with cerebral palsy, which has caused him to have trouble with speech. He brings immense value to his workplace, but he has experienced countless barriers in getting to where he is. In school, he struggled with “people not seeing past my disability, creating stereotypes, and getting various instructional strategies to help me in classes.” After he graduated from Florida Memorial University, where he was recognized as Student of the Year in 2012, Tayone says, “Many of the jobs I have applied for require at least three rounds of interviews. I always had difficulties passing the first stage due to my speech impairment. After having interviews with many prospective employers, I could tell by their responses and body language they were unwilling to hire a person with disabilities. [Because of this] I have not directly disclosed my disability on applications.”

He’s not alone. Research shows that a shockingly low number of employees disclose their disability to their employer, likely for fear of discrimination. It took many rejections, but Tayone found an employer who saw him for his skills, not his disability. “I started working at CCPS as an intern, then I was promoted to a temporary computer analyst, and now I am a full-time computer analyst. I now manage various interns.” Even though he deserves his job and excels at it, he has faced microaggressions, or subtle discrimination, in the workplace. As he notes, “In the past, my co-workers displayed eye-rolling when I spoke or turned away from or avoided me altogether.” But Tayone ignored them because “I did not want to give them control over me. Disability representation in the workplace means that people with disabilities are seen, heard, and respected in their jobs. Furthermore, it promotes inclusion for all. My employer is able to see my strengths and capitalize off of my positive attributes. In the next 5 years, I see myself still working at CCPS as a Senior Computer Analyst.”

He now uses his experience to help those who will come after him. “As a person with a disability, I am keenly aware of the challenges students with disabilities may face when obtaining their education. I am able to advocate for the adequate equipment they need to be successful. Some advice I would give to people with disabilities who are struggling to pursue a career is to be persistent. Never give up on yourself. Build relationships with others in the field to mentor you.”

October is National Disability Employment Awareness Month, we urge you to celebrate the diversity of disability, embrace and support employees like Tayone, and promote equal employment for all.

Read more employment success stories.

The Arc logo

New Bipartisan Bill Would Advance Economic Security for Disabled Americans

/in , , /by The Arc

Washington, DC – The Supplemental Security Income (SSI) program was designed to combat poverty among people with disabilities, but the program’s outdated rules do just the opposite—forcing people to live in poverty to qualify for monthly assistance. Today, The Arc celebrates the introduction of the SSI Savings Penalty Elimination Act by Senator Sherrod Brown (D-OH), Senator Bill Cassidy (R-LA), Representative Brian Higgins (D-NY), and Representative Brian Fitzpatrick (R-PA). This bipartisan bill, which is also supported by over 370 organizations, makes long-overdue reforms to the SSI program that would empower millions of people with disabilities to earn and save more money for their futures.

The SSI program was established 50 years ago and provides critical benefits to over 7.5 million people with disabilities and older adults to help them pay for basic needs like food, clothing, and shelter. But outdated eligibility rules punish SSI beneficiaries for saving money, pushing them into poverty. SSI also guarantees access to Medicaid in most states, which covers long-term services and supports and health care. Right now, people who get SSI cannot have more than $2,000 in financial resources and married couples can only have $3,000. Resources that count towards the SSI asset limit include cash, money in bank accounts, most retirement accounts, stocks and bonds, the value of life insurance policies and burial funds over $1,500, and some personal property. This strict asset limit has not been updated since 1984 and is not indexed to inflation.

“Decades of inflation and inaction have turned a crucial safety net program into a tightrope,” said Darcy Milburn, Director of Social Security and Healthcare Policy at The Arc of the United States. “The maximum amount of money an SSI beneficiary can have in a bank account is 80% less than what beneficiaries were allowed to save in 1972. SSI’s strict asset limits force people with disabilities to live on a financial knife’s edge. It’s an incredibly difficult administrative burden and a very delicate balancing act that can easily tip to losing benefits altogether – which can be catastrophic.”

The SSI Savings Penalty Elimination Act would raise the SSI asset limit to $10,000 for individuals and index it to inflation moving forward. It would also raise the limit for married couples to $20,000 to help correct a harmful marriage penalty. The bill would significantly improve the lives of millions of people with disabilities and allow SSI beneficiaries to use their own savings to address needed emergencies when they arise.

SSI’s low asset limits combined with meager cash benefits are leaving 4 in 10 beneficiaries in poverty. People with disabilities live in poverty at more than twice the rate of those without disabilities, and SSI is a driving factor. These barriers are compounded by the Social Security Administration being in a state of crisis, where millions are waiting for appointments, decisions on applications, and appeals on rejected claims.

“Raising the SSI asset limit is one of the most important things we can do right now to improve financial security for millions of older adults and people with disabilities,” said Milburn. “The current asset limits trap people in poverty, create barriers to work, and make financial independence virtually impossible. SSI beneficiaries cannot save for necessary expenses like a security deposit or car repairs without the risk of losing their benefits, leaving many just one emergency away from homelessness and hunger. The negative impacts of the current SSI asset limits extend beyond individual SSI beneficiaries to their families, communities, and our economy as a whole.”

The Arc has advocated relentlessly for changes to SSI asset limits and against the existing unfair and discriminatory caps. For many years, we have urged Congress to update SSI requirements and benefits so that people with disabilities can have greater financial security and support, as well as pursue opportunities to build their futures.

To meet real-life people who are impacted by SSI asset limits, read these stories from Lauren and Jen and Eddie.

###

About The Arc of the United States: 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. Founded in 1950 by parents who believed their children with IDD deserved more, The Arc is now 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. Through the decades, The Arc has been at the forefront of advances in disability rights and supports. Visit thearc.org or follow us @TheArcUS to learn more. 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, dilworth@thearc.org

The Arc logo

Federal Court in Texas Hears Lawsuit Challenging S.B. 1, State Law Targeting Voting Rights

/in /by The Arc

San Antonio, TX – Today, the United States District Court for the Western District of Texas began the first day of trial in a case challenging S.B. 1, a Texas law that targets voting access. The case is comprised of five lawsuits, including Houston Area Urban League v. Abbott which was filed in 2021 by the Legal Defense Fund (LDF), Reed Smith LLP, ArentFox Schiff, and The Arc on behalf of the Houston Area Urban League (HAUL), Delta Sigma Theta Sorority, Inc., The Arc of Texas, and Jeffrey Lamar Clemmons, a poll worker.

The lawsuit 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 targeting and burdening methods and means of voting used by voters of color. Additionally, the plaintiffs argue the law violates the Americans with Disabilities Act, 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 S.B. 1, including its limitations on early voting hours and a ban on 24-hour voting; the elimination of drive-thru voting centers;  limitations on multiple drop-off locations for mail ballots; limitations on the distribution of mail-in ballot applications; limitations and possible penalties for voter assistants, including criminal felonies; expansion of the authority of partisan poll watchers; and criminal penalties against poll workers seeking to maintain order at the polling place.

“The plaintiffs in this lawsuit brought this case for one reason: voting is a fundamental right that is preservative of all other rights,” said Jennifer A. Holmes, Senior Counsel at the Legal Defense Fund (LDF). “But S.B. 1 is disenfranchisement by a thousand cuts. It makes voting harder at every stage of the process, disproportionately burdening Black and Latino voters and voters with disabilities. No plaintiff, or eligible Texas voter, should face these barriers to voting.”

“Our democracy should encourage voter turnout, not inhibit it,” said Reed Smith partner Kenneth Broughton. “This law erected roadblocks at every stage of voting, from registering to casting ballots. While election officials admitted there was no fraud to fix, they still made it harder to vote for all, particularly disabled people and voters of color.”

“Democracy begins with free and fair elections. Safeguarding voting rights and allowing voters to express their voices and be heard are fundamental to a democratic system. This legislation denies eligible voters this fundamental right and it needs to be protected,” said J. Michael Showalter, partner at ArentFox Schiff.

“Voter suppression is a disability rights issue,” said Shira Wakschlag, Senior Director of Legal Advocacy and General Counsel for The Arc of the United States. “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 by making it harder to vote by mail and receive the assistance they need to vote, and it denies people with disabilities equal access to voting in violation of the law. If a wheelchair user faces an inaccessible building and must – with great hardship – get out of their wheelchair and crawl up the stairs to get inside, no one would argue that this is equal access. The same principle applies here. Voters with disabilities should not be forced to figuratively crawl up the steps to access the vote.”

“The Houston Area Urban League stands firmly against any legislation that could potentially disenfranchise voters, particularly those from marginalized communities,” said Judson Robinson, President and CEO of HAUL. “Our participation in this lawsuit is a testament to our dedication to ensuring that every eligible Texan has a fair and equal opportunity to cast their vote.”

“Texas Senate Bill 1 is a blatant attack on democracy and an egregious violation of the rights of all Texans, with a disproportionate impact on Black and Latino communities and Americans with disabilities,” said Elsie Cooke-Holmes, co-plaintiff and international president of Delta Sigma Theta Sorority, Inc. “For 110 years, Delta Sigma Theta Sorority has been leading the charge in advancing voting rights for African Americans and women, and will persist in advocating for this cause. We stand united against these grave injustices and actively work to establish a fair and inclusive electoral system that honors the rights of all.”

###

Media Contacts:
Jackie Dilworth, The Arc, dilworth@thearc.org, 202-617-3271
Ella Wiley, Legal Defense Fund (LDF), media@naacpldf.org, 212-965-2200
Brad Wise, NewsPros – Reed Smith LLP, brad@newspros.com, 925-588-4744
Linda Yun, ArentFox Schiff, linda.yun@afslaw.com, 312-258-4504
Kerry-Ann Hamilton, Delta Sigma Theta Sorority, Inc., inquiries@deltasigmatheta.org, 301-265-5100
Emaan England, Houston Area Urban League, eengland@haul.org, 404-668-2329

Betty Davis wears a blue top and white pants and stands outsie in front of The Arc of Alachua County sign.

DSP Recognition Week: Betty Davis’ Story

/in , , /by The Arc

People with disabilities want to live in their own communities and make their own choices about their lives, just like everyone else. For millions, direct support professionals (DSPs) like Betty Davis make that independence possible.

Betty Davis stands in a kitchen with a client, assisting her client with medications.Betty has always had the innate ability to create a safe space for disabled people. As a child, she would talk to them in the grocery store, at church, and on the street. At the age of 18, she found herself running a daycare center and was drawn to do more for the disabled children who came through her doors. She enrolled in disability studies at Santa Fe College, which was right across the street from The Arc of Alachua County. Upon graduating, The Arc of Alachua County immediately hired her as a DSP. That was 20 years ago, and Betty has never looked back.

As Betty shares, “I fell in love with my clients. It wasn’t the pay. It wasn’t the management. It was the clients themselves. If you put your heart and soul into this job, you’ll get love and respect back. My clients have loved me so hard through the years.”

Being a DSP is rewarding work, but it can also be physically demanding, emotionally draining, and medically complex. Betty works at a group home with four women who have Prader-Willi syndrome, a developmental disability that causes a range of physical symptoms, learning difficulties, and behavioral challenges – most notably, a constant sense of hunger. Her clients need support 24 hours a day. “Every day, I sit down with each of my clients to go over their caloric intake. I assist them with getting bathed. I make and feed them dinner. I help them do their house chores, manage their medications, and go to bed. On special occasions, like birthdays, I take them home to be with their families. Every Friday, we go out to dinner at a different restaurant and go shopping afterward. They love Walmart, Dollar Tree, Roses, Five Below, and Ollies.”

Not only does Betty advocate for her clients, but they also advocate for her. Betty tears up as she recalls how Melinda, a client who recently passed away at the age of 61, went to the CEO of The Arc, Mark Swain, to ask him to meet her and recognize her work. That year, Betty won Employee of the Year. “She wanted to recognize the type of person I was and that I go out of the way to make them happy,” Betty added.

Despite the crucialBetty Davis stands in line with a few of her clients at Walmart role of DSPs, chronic underinvestment in Medicaid’s home and community-based services has led to paltry wages and training, which has created a nationwide shortage of workers. As Betty says, “Spend a day in our shoes. It might seem like what we do is easy, but it’s not. There’s no training, so I had to learn on the job, and there’s not enough staff. Sometimes, I have to work without a break, cover the next shift, or come in on weekends, but I don’t have a problem with that because I want my clients to be happy. Their families tell me all the time that if I wasn’t in their lives, they don’t know what they’d do or where they’d be.”

Luckily, Betty wouldn’t want to work anywhere else. “The Arc is a wonderful place for resources and a wonderful place to work. They are behind me 100% if I want to get more training, and they try to get as many resources as possible to help DSPs out. This is the place to bring your loved one. My clients wouldn’t want to be any other place.”

DSPs like Betty are vital to helping people with disabilities live with dignity and freedom. Help us celebrate them this DSP Recognition Week and beyond.

The Arc logo

Medicaid Eligibility Renewals: A Message From CMS Office of Minority Health

/in /by The Arc

States are aggressively evaluating their Medicaid enrollments following the end of the public health emergency, and many are losing coverage. Here’s everything you need to know about the unwinding and what to do if you are a Medicaid beneficiary – direct from Dr. Aditi Mallick, Acting Director of the CMS Office of Minority Health.

Health care coverage is a critical lifeline for everyone and especially for people with disabilities and people who may be underinsured. Millions of individuals and families rely on Medicaid and Children’s Health Insurance Program (CHIP) to receive access to vital care to support their physical and mental health and, as a result, are likely to be impacted as states conduct Medicaid and CHIP eligibility renewals following the end of the COVID-19 public health emergency. The Centers for Medicare & Medicaid Services (CMS)1 remains committed to ensuring that minority and underserved populations understand this process and how it may impact their enrollment, eligibility, and overall health care.

Medicaid Renewals 101

In March 2020, as part of COVID-19 relief, Congress authorized additional Medicaid funding for states on the condition that they satisfied a “continuous enrollment” condition, which generally prohibited states from terminating most Medicaid enrollees’ enrollment until the end of the COVID-19 public health emergency. This helped to ensure millions of people could remain enrolled in Medicaid coverage without interruption during the pandemic. The continuous enrollment condition ended on March 31, 2023, allowing states to begin to return to normal operations around eligibility and enrollment, including conducting Medicaid renewals, beginning on April 1, 2023.

Medicaid Renewals Impact on People With Disabilities

Medicaid and CHIP renewals are a multi-step process, and states must begin the process by attempting to complete renewal of coverage based on information available to them without contacting the individual. If that is not possible, agencies must send renewal notices and requests for information to enrollees.

These steps have challenges associated with reaching people with intellectual or developmental disabilities who lack sufficient supports to navigate Medicaid enrollment and eligibility. If an enrollee does not receive or reply to renewal notices from the state (for example, because they have moved addresses), their coverage could be interrupted or discontinued altogether. That could mean losing access to essential health care, medication, and services needed as part of ongoing services, supports, and care plans.

States have independent obligations under federal civil rights laws to ensure that individuals and families continue to have access to Medicaid and CHIP as states conduct renewals. For example, states are required to take reasonable steps to provide meaningful language access for individuals with limited English proficiency and ensure effective communication with individuals with disabilities. Ensuring access to information is vital and required. Losing Medicaid also means losing long-term services and support (LTSS) and home and community-based services (HCBS), such as care for people with disabilities who may need more support of age; physical, cognitive, developmental, or chronic health conditions; or other functional limitations that restrict their abilities to care for themselves.

The Road to Renewal

The first and most important step for ensuring continuation of coverage is consistent outreach and communications to those impacted to confirm that they are completing their renewal forms accurately and in a timely manner. Information on the Renew Your Medicaid or CHIP Coverage2 webpage is a great starting point for helping people better navigate renewals. The webpage outlines how to prepare for the renewal process, what to do if you no longer qualify for Medicaid or CHIP, and where to go for more help, including contacts for each state’s Medicaid office.

We Need Your Help!

CMS is also using multiple creative avenues—such as direct partner outreach, monthly stakeholder webinars, social media, and ad placements—to spread awareness about Medicaid and CHIP renewals and to reach those who may have been missed through traditional communication channels. We are also planning communications focused on families with younger children during back-to-school activities in the fall.

Encourage people who lost their coverage to visit HealthCare.gov to see if they are eligible to enroll in a low-cost, quality health plan. Find toolkits, drop-ins, creative assets, and translations on the Medicaid and CHIP Renewals Outreach and Educational Resources webpage and be sure to download the All Hands on Deck Toolkit to get started in your community. Keep the conversation going throughout Open Enrollment! Find your state here to learn more.

Once enrolled, Coverage to Care offers resources to provide anyone information on health care coverage options, understanding their rights, and how to use their benefits. Join CMS in helping people understand and use their health coverage by sharing these tools with your community.

  • The Coverage to Care (C2C)3 campaign helps underserved populations understand health care coverage and connects them to primary care and preventive services that is right for them.
  • The C2C Roadmap to Better Care4 explains what health coverage is and how to use it to get primary care and preventive services. This resource is available in multiple languages, including Spanish5, as well as a Tribal Version6.
  • Getting the Care You Need: A Guide for People With Disabilities is a resource available in multiple languages to explain a person’s rights, how to work with health care providers, and how to take an active role in your health care.
  • Partner resources7 help health care professionals and national and community organizations support consumers as they navigate their coverage. This resource is available in multiple languages, including Spanish8.
  • Braille and additional format resources are available, contact CoveragetoCare@cms.hhs.gov.

By working together, we can reach those most in need of health care coverage as Medicaid renewals continue. Let’s stay committed to our shared vision of finding ways to consistently and creatively reach those who need our support. Together, we can ensure that eligible individuals remain on Medicaid and get the health care they need – a critical step helping individuals with intellectual or developmental disabilities receive the highest quality of health care.

1. (n.d.). Centers for Medicare & Medicaid Services. CMS.gov. https://www.cms.gov/
2. Medicaid (n.d.). Renew Your Medicaid or CHIP Coverage. Medicaid.gov. https://www.medicaid.gov/resources-for-states/coronavirus-disease-2019-covid-19/unwinding-and-returning-regular-operations-after-covid-19/renew-your-medicaid-or-chip-coverage/index.html
3. CMS OMH (n.d.). Coverage to Care. https://www.cms.gov/about-cms/agency-information/omh/health-equity-programs/c2c
4. CMS OMH (n.d.). C2C Roadmap to Better Care. https://www.cms.gov/files/document/c2c-roadmap-better-care.pdf
5. CMS OMH (n.d.). Guía Para Una Mejor Atención. https://www.cms.gov/files/document/roadmap-better-care-spanish.pdf
6. CMS OMH (n.d.). Roadmap to Better Care Tribal Version. https://www.cms.gov/files/document/c2c-roadmap-booklet-tribal.pdf
7. CMS OMH (n.d.). Partner Toolkit Get Involved in Coverage to Care. https://www.cms.gov/files/document/c2c-partner-toolkitenglish.pdf
8. CMS OMH (n.d.). Herramientas para Socios Participe en Coverage to Care. https://www.cms.gov/files/document/c2c-partner-toolkitspanish.pdf