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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 to find an affordable, comprehensive health plan.

For more information, you can visit

The United States Capitol Building

A Recommitment to Care with the Introduction of the Better Care Better Jobs Act

Today, Senator Bob Casey (D-PA) introduced a landmark piece of legislation to invest in the country’s care economy and make important improvements to Medicaid home and community-based services (HCBS).

The care workforce is a vital part of community living and inclusion for people with disabilities—and yet the system that supports it continues to be underfunded and complicated to navigate. Hundreds of thousands of people with intellectual and developmental disabilities remain on waiting lists for the services they need to live in and thrive in their communities. The new Better Care Better Jobs Act will address these deficits through several key improvements, including a permanent increase in federal Medicaid funding for eligible states, adding over $300 billion toward expanding and improving access to HCBS.

The proposed updates to Medicaid complement President Biden’s American Jobs Plan—which targets the current care infrastructure crisis and aims to fortify it for the future—by expanding eligibility, requiring coverage for personal care services, expanding supports for family caregivers, addressing the direct care workforce crisis by raising wages, and more.

“People with disabilities deserve the supports to live meaningful and dignified lives in their communities. Their care workers deserve the pay and hours to avoid burnout and turnover. And their families deserve the aid of care workers so they do not have to quit or cut their hours to fill in the gaps. It’s 2023, and we should not have to still be fighting for these basic needs so that everyone has the ability to build the life they want.

“The Arc is, as always, ready to rally support for these much-needed changes and looks forward to making sure Congress knows the difference that they would make in the lives of countless people with disabilities,” said Peter Berns, CEO, The Arc.

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The Arc Announces Departure of Longtime CEO and Leadership Transition

The Arc’s Board of Directors announces today that its Chief Executive Officer, Peter Berns, will be leaving the organization upon expiration of his contract in February. Since 2008, Peter has been at the helm of The Arc, the world’s largest community-based organization of and for people with intellectual and developmental disabilities (IDD) and their families. Under his leadership, the organization has charted an ambitious path of growth and modernization as it carries out its mission of “promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes.”

Early in his tenure, Berns took on the task of successfully rebranding the organization and its chapter network, creating a unified identity and messaging that increased its national recognition. He then spearheaded the creation of eight new national programs to address pressing needs in the IDD community on aspects of life ranging from education and employment, to future planning, health, and technology, including the National Center on Criminal Justice and Disability and a new legal advocacy program.

He also steered the organization, its 600 chapters, and the people they serve through difficult times, including legislative threats to Medicaid and to Social Security—programs that make life in the community possible for people with IDD.

During the past three years, Berns has successfully led The Arc through the COVID-19 pandemic and supported chapters to adapt their services in a constantly changing environment.  The Arc helped lead the disability community through the pandemic, mounting successful legal challenges to discriminatory policies in medical care and rallying advocates for investments in home and community-based services.

At the same time and with the future in mind, Berns led the organization through a collaborative process to develop the new Strategic Framework for the Future of The Arc and launched a new Diversity Strategic Action Plan for Advancing Access, Equity, and Inclusion, broadening the organization’s commitment to intersectional advocacy and supports to people with disabilities and their families.

Under his leadership, The Arc greatly expanded its grassroots organizing and mobilization to achieve more power and successfully influence the government policies and practices that so dramatically affect the lives of people with IDD and their families.

As the organization approaches its 75th anniversary, Berns’ most recent endeavor has been to resurrect The Arc of the United States Foundation, with Foundation board chair Carol Wheeler, to build a base of philanthropic support that will ensure The Arc remains a strong advocate for people with IDD and their families for decades to come.

Commenting on his tenure, Berns said: “Since my first year on the job, I’ve heard people with IDD, their parents, and family members, talk about how they depend on The Arc to protect their rights and support them as valued members of their communities. That simple, honest sentiment was all I needed to fuel my passion for this work over the past 15 years.”

Current Board President, Laura Kennedy noted: “The board thanks Peter for all of his accomplishments during his tenure and wishes him well going forward. He leaves The Arc having built a strong foundation for the organization as it now undertakes a national search for new leadership.”






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.

The Arc logo

Enough Is Enough. Our Statement on the Club Q Tragedy.

As we grieve yet another mass shooting tragedy in the U.S., thoughts and prayers are not enough. We are heartbroken by the continued harassment, hateful legislation, and exclusion of LGBTQ+ individuals that led to the shooting at Club Q in Colorado Springs, Colorado on Sunday.

Enough is enough. Everyone deserves the same respect, opportunities, and safety. Diverse perspectives, identities, and cultures are something to be valued, not feared and shunned, and are an essential part of the fabric of America. The Arc is no stranger to helping people navigate dehumanizing barriers to simply live openly in their communities, and ALL Americans deserve better. We stand in solidarity with the victims, their families, all LGTBQ+ individuals, and anyone who has experienced gun violence.

As each subsequent shooting makes clear, such as that which occurred two days later at a Walmart in Chesapeake, Virginia, our elected leaders at the national, state, and local levels must do even more to solve the ongoing problem of gun violence that plagues our nation and often targets vulnerable, marginalized communities, including people with disabilities.


The Arc logo

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.


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,

A gloved hand holding a vaccine vial, with the words COVID-19 in black on a board behind it.

It’s Flu Season: Are You Ready?

A young child gets a band aid after a vaccine. She is smiling. This year we are facing a triple threat for flu season: the flu, Covid-19, and Respiratory Syncytial Virus Infection (RSV). RSV is a viral respiratory infection that usually causes cold-like symptoms. Hospitals are currently seeing an alarming increase in pediatric cases of RSV and some are becoming overwhelmed by the surge.

According to research published by the American Association of Pediatrics and the National Institute of Health, babies and children with Down syndrome are at a higher risk of severe complications and even death from RSV. Much like any other respiratory disease, living in a residential care facility or attending day programs can put people with intellectual and developmental disabilities (IDD) at increased risk of exposure. Vaccines for RSV are still in development, but there are important steps you can take right now to protect yourself, your loved ones, and your community during the coming wave of infections.

Getting immunized against this year’s flu strain and staying up-to-date on Covid-19 booster shots are critical actions to stay safe. The CDC has stated that children with intellectual disabilities, cerebral palsy, and other neurologic disorders are at greater risk of severe illness and death from both Covid-19 and the flu. Fighting any one of these viruses can be tough, so it is important to take this step to reduce the likelihood of severe disease or concurrent infections. As the days get shorter and temperatures get lower, remember to make time to get vaccinated. Consult with your doctor if you have any questions.

You can find free flu and Covid-19 vaccines near you at

The Arc logo

The Arc of the US Hires Its First Senior Executive Officer of Development

A man standing outside in front of tall bushes with pink flowers. He has short brown hair and is wearing a navy suit and tieThe Arc of the United States has hired its first-ever Senior Executive Officer of Development: Karim Merchant. Karim will lead a team to develop, implement, and manage fundraising strategies that support The Arc’s longstanding commitment to advocate for and serve people with IDD. He will create and implement a comprehensive growth strategy and fundraising plan to cultivate private and public philanthropic support advancing The Arc’s vision for people with IDD to be valued members of their community who can achieve their full potential and a future that is secure. As The Arc approaches its 75th anniversary, Karim will work to build a stronger base of financial support for the national organization, including relaunching The Arc US Foundation, to assure that its advocacy and services will continue for decades to come and give families caring for a person with IDD peace of mind.

Karim comes to The Arc most recently from the Cancer Support Community (CSC), the largest professionally-led nonprofit network of cancer support worldwide, where he led a dynamic fundraising team focused on growing major and planned gifts, corporate partnerships, and foundation grants. Prior to that, at the Aga Khan Foundation USA, Karim led a fundraising team and hundreds of volunteers across the country to raise nearly $14 million annually to improve the quality of life of communities in Asia and Africa.

Karim is a member of the Board of Trustees of Excelsior University and chairs its Institutional Advancement Committee. He recently represented CSC alongside DC grant makers as a volunteer reviewer in the first grant round of DC’s $95 million health equity fund. Karim has enjoyed building experience in a variety of donor-centered fundraising strategies including major and mid-level giving, planned giving, annual fund, board engagement, corporate sponsorships and partnerships, grant writing, events, volunteer leadership, recurring giving, digital campaigns, point-of-sale fundraising, and direct mail. Before he was a fundraiser, Karim practiced corporate finance law, most recently at the Chicago office of Baker and McKenzie. Karim holds a J.D. from The University of Virginia School of Law and a B.A. in Economics and Spanish from Vanderbilt University.

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The Arc Applauds Federal Student Loan Debt Relief Plan

Washington, DC— With the current moratorium on student loan payments set to expire at the end of this month, the Department of Education and the White House have announced a new plan to tackle student loan debt for millions of borrowers across the country. These new changes will help millions of people with disabilities, if they can access the new programs.

The new changes include $10,000 of debt cancellation for most borrowers ($20,000 if the borrower has Pell Grant loans) and a new income-driven repayment plan for undergraduate borrowers. These new programs may be able to help millions of borrowers with disabilities if the implementation is seamless and accessible to those that are qualified.

Historically, the Total and Permanent Discharge (TPD) program has provided an avenue to discharge federal student loan debt for people with permanent disabilities that limit their ability to work. However, the TPD required borrowers to apply for debt forgiveness and was filled with red tape and complicated, paperwork-heavy processes. Even after the TDP process was improved and automated, eligibility standards continue to be high. Millions who do not meet these standards—including other marginalized groups like those living in poverty and those with language barriers—will need to rely on the Administration’s new relief plan.

“The process for student loan debt relief has long been cumbersome and ineffective for people with intellectual and developmental disabilities, who already must navigate complicated state and federal benefit programs,” said Bethany Lilly, Senior Director of Public Policy for The Arc. “We are relieved that the Administration is taking steps to provide debt relief and make long-needed reforms to existing repayment programs. During this time of unprecedented financial strain, it will be crucially important to ensure that people with disabilities can access these new options.”

The Arc looks forward to working with the Administration to ensure that the new options are as automatic as possible for borrowers and accessible for people with disabilities.

the verizon logo in black on a white background

The Arc Receives Second Award From Verizon to Expand Disaster Preparedness Across the U.S.

For the second year, The Arc of the United States is pleased to receive an award from Verizon to further implement the Building Community Resilience Through Inclusive Disaster Preparedness program. With this funding, The Arc, along with The Arc Muskegon, The H.E.A.R.T. Program, Volunteer NY, and The Arc Nature Coast, will band together to host both online and in-person volunteer events that advance emergency preparedness in communities across the U.S. Participants will center on the perspectives and needs of people with disabilities during a disaster. These service opportunities will be featured on Citizen Verizon Volunteers, the company’s employee volunteerism portal, introducing V-teamers to The Arc’s constituents, and fostering opportunities for both communities to learn about each other.

Through the program, Verizon employees will again be offered a number of volunteering options, such as conducting mock 911 calls, creating no-sew blankets to shield against long winter nights, participating in letter-writing campaigns, creating disaster kits, and much more.

“The ongoing COVID-19 pandemic highlights the urgent need for communities, organizations, and businesses to strengthen their emergency plans so that people with disabilities are never left behind when disaster strikes. Verizon’s support allows The Arc to continue shaping the conversation around disaster preparedness, centering on individuals with disabilities. We are grateful and look forward to partnering with Verizon again,” said Peter Berns, CEO of The Arc.