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Get Ready for Medicaid Renewals in 2023

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.

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Using Medicaid Is Complicated: That Hurts People With Disabilities

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

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.

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

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.

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National Disability Rights Groups File Amicus in Perez v. Sturgis

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.

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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@thearc.org

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

You Have the Power: Go Vote!

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 thearc.org/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

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

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 U.S. Senators to raise the savings limit today!

 

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Alice and Soojung’s Story

“We’ve spent most of her life waiting for the help we need, for the wellbeing of our family.”

Soojung teaches middle school math and has three wonderful children. Her middle child, Alice, has Rett Syndrome, and has severe seizures, scoliosis, and uses a G-tube for nutrition, fluids, and medications. Alice has had many major and minor surgeries throughout her childhood, and every time Soojung and her husband requested at-home nursing care for her recoveries, it was denied by private insurers.

Alice’s pediatrician sat Soojung down and said, “You can’t go on like this.” The round-the-clock care and the toll of the stress was overwhelming them.

With the pediatrician’s help, Alice was finally accepted for services through the Medicaid program when she was 11 years old. Night nursing services led to a great improvement in Alice’s health, keeping her out of the hospital for the first year in her life. Soojung went back to the classroom, where she loves teaching math. And today, with the addition of day nursing services, Alice is 15 years old and able to participate in school, at home during 2020, and in-person in 2021 while Soojung teaches her students.

The Arc is fighting to make sure no family has to wait years for services that improve a child’s health and ability to thrive in the community.

“My daughter has the right to receive an equal chance of living her life, and Medicaid provides that extra help she needs to survive, learn, and thrive. The Arc’s work is so critical to ensure that Alice has a fulfilling life.”

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Guiding The Arc Through Lived Experience With Disability

“Nothing about us without us” is a theme of the disability community, reminding the world that people with disabilities expect and deserve autonomy over their lives. This includes actively participating in the organizational structures that advocate for and with people with disabilities.

With this guiding principle in mind, The Arc established its National Council of Self-Advocates (NCSA) in 2012. NCSA abides by the “nothing about us without us” motto by creating a space where people with intellectual and developmental disabilities (IDD) can provide guidance to The Arc and offer their unique disability perspectives. The council also strives to provide professional growth opportunities to its members, such as access to job opportunities and other leadership roles.

NCSA is led by Chloe Rothschild, a national board member for The Arc, and it is supported by Juan Guerrero, a policy associate for The Arc. As a sibling of an individual with a disability, he understands and values the need to amplify the perspectives of people with IDD. This understanding has motivated him to constantly create new growth opportunities for NCSA’s approximately 300 members.

NCSA’s members are from all over the U.S., and many credit the group for providing a space to meet other self-advocates and freely discuss their thoughts on certain topics. Hearing from one another is essential to personal growth, especially in the advocacy space.

At the beginning of 2022, the council set a goal of providing speaking engagements, both to NCSA Officers and the general council, and they also decided to gather more frequently. Each monthly meeting centers around a topic relevant to self-advocacy, such as employment, voting, interacting with law enforcement, leading with a disability, and more. In a recent session, three council members presented on employees with disabilities assuming leadership positions in the working world. From time to time, members will be called upon to review materials created by The Arc.

General members can apply for a two-year officer position. If elected, they are expected to attend officer meetings, and they are also charged with setting the monthly agenda and preparing presentations for the regular monthly meetings. Recently, the current officers have begun leading and facilitating these monthly sessions.

Using the knowledge and experience gained in this space, NCSA member Mark got the opportunity to speak at the Disability Vote Submit. He was also able to help with The Arc’s toolkit on self-determination, and he helps doctors understand how to work with people with disabilities.

Another member, Nathaniel, advises NCSA has deepened his understanding of the federal policy system. With his newfound knowledge, he plans to serve as a mentor to people with disabilities by pursuing their Bachelors, Masters, or even a PhD.

There’s no better time to join than right now! We’re currently growing and would love for anyone interested in joining to come check us out. The only requirement for acceptance is that you must identify as a person with a disability.

Learn more about NCSA and click here to join as a general member. Current members can also apply for an officer position this fall. We look forward to shaping the future of disability with you!

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All About Congressional August Recess

When you are young, recess signals a break from the drudge of work. It is a welcome chance at a bit of freedom to play and escape the school day. But when you are a member of Congress, recess takes on an entirely different meaning – one that is important for disability advocates to know.

For U.S. senators and representatives, recess is a time of the year when legislators leave their duties in Washington, D.C. behind and return home to the districts and states they represent. But members of Congress are not home to relax and recharge for the fall legislative session. They are there to travel around their districts, attending a variety of community events, and hearing from as many constituents as possible.

You can use this time to educate your federal elected officials on how critical policy priorities impact people with disabilities, which may include you and your family. The Supplemental Security Income (SSI) Savings Penalty Elimination Act and the importance of home and community-based services (HCBS) are just a few of the critical policy priorities.

Your stories can empower these decision-makers to return to Washington with the concerns of the disability community top of mind.

So, what are you waiting for? The following tips can help you make the most of your advocacy during August congressional recess!

  • Find out who your members of Congress are. The Arc provides an easy way to look them up. Visit our Action Center and enter your zip code in the Find Your Elected Official box on the right-hand side of the screen. You can also follow your members of Congress on social media by finding their Twitter handles.
  • Attend town hall events. Many members of Congress host town hall events during August recess to hear from their constituents. You can find townhalls in your area here or look on your elected official’s website.
  • Download The Arc’s August Congressional Recess Toolkit. The free toolkit offers everything you need to advocate effectively, including links to action alerts, plain language factsheets on key issues, tips to engage, and sample letters to the editor that you can personalize and submit to local newspapers.
  • Connect with your local chapter of The Arc. Find your state or local chapter to learn more about advocacy opportunities in your area. They may have meetings and other activities you can join.

This August recess presents an excellent opportunity for sharing your perspective on important policy issues and educating members of Congress in your hometown on what living with a disability is like. With just a little preparation, you can prepare your legislators to fight for disability rights in the fall!