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25 Patient and Provider Groups Applaud Supreme Court Ruling, but Express Concern About Other Plaintiffs Keeping FDA Authority Challenge Alive

Washington, DC – Our 25 organizations, representing patients with serious health conditions and disabilities and their providers, applaud the Supreme Court’s unanimous ruling reversing the Fifth Circuit’s decision in Alliance for Hippocratic Medicine et al. v FDA et al, on the grounds that the plaintiffs don’t have standing in their challenge concerning the use and availability of Mifepristone, a drug prescribed for the treatment of a variety of life-threatening conditions, including cancer. We remain concerned that different plaintiffs will continue to pursue dangerous and unfounded arguments that undermine the Food and Drug Administration’s (FDA) decisions about drug safety. Today’s ruling allows the possibility that others will continue pursuing the challenge to the FDA’s decisions regarding Mifepristone and that future litigants will seek to block or limit access to other FDA-approved drugs and treatments for reasons unrelated to safety and efficacy, as warned in our amicus brief.

Generations of Americans have trusted the FDA’s expertise, which, over time, has yielded rigorous, science- and evidence-based approval of tens of thousands of lifesaving and life-changing medications and devices for people with serious health conditions. FDA experts are best equipped to determine the safety and efficacy of medications and their conditions of use, and it is dangerous to eviscerate or dilute their authority.

We unequivocally support the FDA’s role in safeguarding patients and urge the Department of Justice to continue rigorously defending that authority.

The Leukemia & Lymphoma Society
The ALS Association
American Cancer Society
American Cancer Society Cancer Action Network
Academy of Managed Care Pharmacy
American Society of Clinical Oncology
American Society of Hematology
The Arc
Arthritis Foundation
Association for Clinical Oncology
CancerCare
Council of Medical Specialty Societies
Crohn’s & Colitis Foundation
Cystic Fibrosis Foundation
Epilepsy Foundation
Friends of Cancer Research
HealthyWomen
Hemophilia Federation of America
Lupus Foundation of America
Muscular Dystrophy Association
National Alliance on Mental Illness (NAMI)
National Multiple Sclerosis Society
National Organization for Rare Disorders
National Patient Advocate Foundation
RESOLVE: The National Infertility Association

A Hispanic young man with disabilities sits with a teacher at a desk. He is looking at a laptop.

Comcast Grants $1M to Transform The Arc’s Data, Tech Training, and Spanish Education Resources

Washington, DC – The Arc of the United States and Comcast NBCUniversal announced a major expansion of their long-standing partnership that will break down barriers and create more equity and opportunity for people with intellectual and developmental disabilities (IDD). Comcast is providing a $1 million grant over two years to The Arc to modernize its data infrastructure, deepen the impact of its digital literacy programs, and give Spanish-speaking families access to special education advocacy. This funding is a part of Project UP, Comcast’s $1 billion commitment to advance digital equity and help create a future of unlimited possibilities.

Robust data is the foundation for driving meaningful change. This investment will revolutionize how The Arc collects and analyzes information across its network of nearly 600 chapters nationwide. The new centralized data system will track vital services its chapters provide, capture the scope of The Arc’s collective impact, and reveal insights to better advocate for and support the IDD community. The benefits of this new technology will reach every stakeholder: the national office will better support its chapters, chapters will learn best practices from each other and better meet their community’s needs, and people with disabilities and their families will have a stronger federation to rely on.

“In our pursuit of a fully inclusive society, data is power,” said Katy Neas, CEO of The Arc of the United States. “This grant allows us to wield our collective strength across our nearly 600 chapters to more strategically uplift millions of people with disabilities across America, making our human impact even greater.”

Comcast has also supported The Arc’s efforts to ensure resources are accessible to Hispanic communities. Through funding in 2023, The Arc@School Special Education Advocacy Curriculum was translated into Spanish and launched in early 2024. As part of the new grant, The Arc will conduct targeted outreach to Hispanic communities through Spanish-language webinars, collaboration with Spanish-speaking Special Education Advocates, and local program access to help this underserved population become strong special education advocates. The funding will specifically provide subgrants to five chapters of The Arc—located in Arizona, Colorado, Florida, Texas, and Virginia—that will give 150 Spanish-speaking families free access to the program and host focus groups to learn and better ensure their children receive a quality public school education.

“For too long, students with disabilities have faced a whole host of barriers that have denied them the free, appropriate public education they are entitled to,” Katy Neas said. “It is essential that parents and school personnel alike fully understand their rights and responsibilities so that students get the education they need consistent with federal law. Our partnership with Comcast to get The Arc@School in the hands of more families and educators is tearing down those barriers in profound ways. With their support, we are empowering students to not only access the education they deserve but to truly thrive.”

In addition, the Comcast grant will support The Arc’s Tech Coaching Centers, which provide customized digital skills training to people with IDD. The Arc will broaden its training to include caregivers and family members, which will better integrate technology skills into all environments of a person’s daily life, and support a total of 10 sites across Colorado, Florida, Illinois, Indiana, Maryland, New Jersey, Oregon, Tennessee, and Texas. Since 2014, Comcast has helped The Arc’s Tech Coaching Centers empower over 2,500 people with IDD through training that advances measured outcomes in employment, health, independent living, education, and interpersonal connections.

“Whether it’s having a reliable job, managing your health, learning lifelong skills, or being socially connected—technology is the bridge to opportunities and independence,” said Dalila Wilson-Scott, EVP and Chief Diversity Officer of Comcast Corporation and President of Comcast NBCUniversal Foundation. “We’re proud to partner with The Arc to meaningfully advance digital access and equity for people with disabilities.”

 

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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. There are over 7 million people with IDD in the United States, which encompasses over 100 different diagnoses. Visit www.thearcwebdev.wpengine.com 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.

 

About Comcast Corporation: Comcast Corporation (Nasdaq: CMCSA) is a global media and technology company. From the connectivity and platforms we provide, to the content and experiences we create, our businesses reach hundreds of millions of customers, viewers, and guests worldwide. We deliver world-class broadband, wireless, and video through Xfinity, Comcast Business, and Sky; produce, distribute, and stream leading entertainment, sports, and news through brands including NBC, Telemundo, Universal, Peacock, and Sky; and bring incredible theme parks and attractions to life through Universal Destinations & Experiences. Visit www.comcastcorporation.com for more information.

 

Media Contacts:

Jackie Dilworth

dilworth@thearcwebdev.wpengine.com

 

Kim Atterbury

k.kim_atterbury@comcast.com

A person with disabilities using a wheelchair is with a thre other people. They are on a sidewalk in a city.

The Arc and United Health Foundation Launch $2.5M Partnership to Tackle Mental Health Crisis for People With Disabilities

The partnership will provide $100,000 to 10 communities to expand mental health support for people with intellectual and developmental disabilities

MINNEAPOLIS, MN, and WASHINGTON, DC – The United Health Foundation, the philanthropic foundation of UnitedHealth Group (NYSE: UNH), has awarded The Arc of the United States a three-year, $2.5 million grant to improve mental health care for people with intellectual and developmental disabilities (IDD). Up to 40% of people with IDD have co-occurring mental health conditions, and this critical funding will help address their unmet mental health needs.

Currently, only 1 in 10 children and adolescents with IDD and mental health disorders receive specialized services. Additionally, people with disabilities report 3 times more suicidal ideation compared to those without disabilities, and adults with disabilities are 3.5 times more likely to experience frequent mental distress. These statistics highlight the need for training and awareness to ensure providers and caregivers are equipped to support the mental health needs of people with disabilities.

“People with intellectual and developmental disabilities face barriers from the moment they are born, which can have a direct impact on their mental health,” said Katy Neas, CEO of The Arc of the United States. “But too often, their mental health needs are going unmet due to stigma, lack of training, and biases. This generous investment by the United Health Foundation gives us a path to tackle this mental health crisis head-on by providing critical training to all who interact with our community—medical professionals, caregivers, first responders, educators, families, and more. Let’s work together to improve coordination of care, raise awareness, and ensure everyone’s mental health needs are supported.”

The partnership will deploy $100,000 in direct grants to 10 chapters of The Arc nationwide to build comprehensive local solutions tailored to people with IDD. This includes expanding access to quality mental health care services, improving coordination between disability and health systems, training over 2,000 providers and caregivers to recognize mental health needs in people with IDD, and launching public awareness campaigns to counteract stigma and misconceptions.

The 10 chapters receiving grants are: The Arc of Arizona, The Arc of Loudoun (VA), The Arc of Macomb County (MI), The Arc of Mississippi, The Arc of Oklahoma, The Arc Oregon, The Arc Prince George’s County (MD), The Arc Rhode Island, St. Louis Arc (MO) and Sertoma Star Services (IL).

“When we root ourselves in empathy and build alongside those with lived experiences, pretty powerful things begin to take shape,” said Dan Schumacher, executive vice president, UnitedHealth Group, who also serves on the Board of Directors of the United Health Foundation and as the executive sponsor of UnitedHealth Group’s disability inclusion employee resource group. “The United Health Foundation is committed to building strong partnerships and providing resources to address the needs of our communities. Together with The Arc, we’re excited to see the impact this work has on providers, caregivers and the people they serve.”

A key component of the grant is partnering with the National Council for Mental Wellbeing to adapt its evidence-based Mental Health First Aid program with information on IDD. The training teaches how to identify and respond to signs of mental illness and substance disorders. As the Council notes, “Most of us would know how to help someone having a heart attack, but too few know how to respond if someone was having a panic attack or showing signs of substance abuse. Mental Health First Aid takes the fear out of starting these conversations.”

Over three years, the United Health Foundation grant will help train caregivers, health care professionals, first responders, educators, and family members to recognize the mental health needs of people with IDD and decrease the number of mental health crisis incidents experienced by this population. The partnership will also provide mental health resources directly to people with IDD through the participating chapters to help them recognize and communicate their own needs. This is vital for individuals, and also families as research shows the mental well-being of parents of children with IDD is strongly influenced by the severity of their child’s co-occurring mental health conditions.

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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. There are over 7 million people with IDD in the United States, which encompasses over 100 different diagnoses. Visit www.thearcwebdev.wpengine.com or follow us @TheArcUS to learn more.

About the United Health Foundation: Through collaboration with community partners, grants, and outreach efforts, the United Health Foundation works to improve the health system, build a diverse and dynamic health workforce, and enhance the well-being of local communities. The United Health Foundation was established by UnitedHealth Group (NYSE: UNH) in 1999 as a not-for-profit, private foundation dedicated to improving health and health care. To date, the United Health Foundation has committed nearly $800 million to programs and communities around the world, including a $100 million commitment to help diversify the health workforce. To learn more, visit UnitedHealthFoundation.org.

Media Contacts:
Tony Marusic
UnitedHealth Group
312-363-7714
tony_marusic@uhc.com

Jackie Dilworth
The Arc of the United States
202-617-3271
dilworth@thearcwebdev.wpengine.com

A photo of Ryan Gainer standing outside. He is wearing a blue polo shirt and smiling.

The Arc’s Statement on the Killing of Ryan Gainer

A photo of Ryan Gainer standing outside. He is wearing a blue polo shirt and smiling.The killing of Ryan Gainer, a Black autistic teen, is a devastating injustice. Too many people with disabilities, especially those from marginalized communities, cannot access the crisis intervention services they need. In the face of Ryan’s mental health crisis, his family called 911 for help. Instead of receiving the care he needed from a competent professional, he was killed. Because of the tragedy of Ryan’s death and the death of others before him, The Arc’s National Center on Criminal Justice & Disability is working to reform our public safety practices across the country. This center offers comprehensive training to improve crisis response for people like Ryan. Our hearts go out to the Gainer family and all those who loved Ryan. We pledge to continue to keep working for a just, equitable world for all people with disabilities.

Kris, a man with cerebral palsy, is smiling. He's holding a number 1 up with his hand.

Comcast and The Arc Collaborate to Improve Digital Skills and Make Life-Changing Impact for People With Disabilities

Digital access and skills are a critical component of modern life. In 2023, The Arc and Comcast teamed up to help people with intellectual and developmental disabilities (IDD) leverage technology to open the door to new experiences in their communities.

The Arc and Comcast have a long-standing partnership to do this work. The Arc’s national network of nearly 600 chapters provides vital resources and services to individuals with IDD and their families to promote greater independence and opportunity in the community—and through this partnership, since 2017, more than 3,000 clients have received basic digital skills training.

The program continues to expand what’s possible for people with IDD in their professional and personal lives—giving them the tools to chart their own course, just like we all want to do.

Meet Kris, a 59-year-old man with cerebral palsy.

Kris, a man with cerebral palsy, is smiling. He's holding a number 1 up with his hand.Kris lives with his sister’s family in his hometown of Greely, Colorado, and has been successfully employed for 40 years, currently working full time at the busiest grocery store in town. He is an avid sports fan—Go Bears!—has a busy social life, and because of his gregarious personality he is a bit of a local celebrity, traveling around town on his e-bike. Kris has become very active in civic service—involved with the Chamber of Commerce, volunteering at local nonprofits, and serving in leadership roles at both The Arc of Weld County and on The Arc’s National Council of Self-Advocates.

To be effective in his new roles, Kris had to better leverage modern technology and communication platforms. He was comfortable with the basic use of his cell phone and his laptop, and The Arc of Weld County provided tech coaching to give him the confidence with the more advanced technology he needed to be successful. Kris learned how to navigate complex websites with multiple drop-down navigation structures and use passwords to access secure portals. His tech coaches showed him how to sync his calendars and email on both devices to stay on top of his busy schedule. He has even mastered accessing virtual meetings. After a long day, his eyes get tired and email can become stressful, so Kris taught himself how to use the read aloud feature to make it easier.

Kris continues to get weekly tech coaching sessions to keep advancing his skills. He is learning to use folders to organize his documents, better managing calendar invites, learning tactics to ensure he is responsive, and understanding how to identify and handle junk or malicious email. Like many of us, passwords and computer updates can still “throw him for a loop” from time to time, but he stays patient, and as he says, “It feels good when you figure something out.”

By advancing his technology skills, Kris has been able to pursue work that he feels is incredibly important. He shares his lived experience as a person with IDD while counseling disability organizations at the local, state, and national level on how to better support people with disabilities. “I know what it feels like to feel like you are not heard. I want to help people be heard.”

Meet Roselyn, a 60-year-old woman with Down syndrome.

Roselyn, a woman with Down syndrome, is standing in front of a house and smiling. She's wearing a colorful blouse and jeans. Her hands are on her hips.Roselyn has lived with her mother and received support from The Arc of Greater Indianapolis since 1981. During the week, Roselyn works at Corteva Agriscience through The Arc of Greater Indianapolis’ employment services. She works as part of a team that assists scientists in preparing seedling trays for growing new plants, hosing down trays when experiments are complete, and keeping the greenhouse labs clean. Roselyn is very proud of her work and the independence she has from earning a paycheck. She recently bought a kitchen table set and used her tax check to buy a new washer and dryer.

However, when her mom had to be moved into a nursing home quite abruptly, Roselyn needed an emergency placement. The Arc of Greater Indianapolis helped move her into a new living environment with staff support. Roselyn enjoys the financial independence that comes with working—for example, she has a standing hair appointment every two weeks for some pampering at the salon. With more activities in the community, Roselyn started wanting to enjoy some alone time without staff having to be with her. This was going to require some tech coaching to do so safely.

Roselyn had used cell phones over the years, but she never really explored the features they offered and would either lose or break them. If she wanted to call family, staff would have to help her. Staff at The Arc of Greater Indianapolis worked with Roselyn regularly for a couple of months as part of these tech coaching sessions. They helped her learn how to call and text family, friends, and staff and how to contact help if she ever feels unsafe. She has learned how to access the internet and use apps like Voice to Text to look things up and connect with friends. Now, she gets time to herself each day. Roselyn gets home from work around 1:30, but her staff don’t arrive until 3:30. She either calls or texts them, though, to let them know that she made it home safely. Then she spends some time searching for videos on dogs and cats (she loves showing these to her staff later) as well as watching her favorite shows online (she especially loves Night Court and Law & Order). If the weather is bad on Sundays, Roselyn even watches church online. When she’s not working or using her phone, she likes doing 5,000-piece puzzles, going shopping, and seeing her Colts or Pacers play.

Through tech coaching, Roselyn has achieved a newfound sense of independence. You never fully appreciate how nice it sometimes is to be alone if you’ve never been able to experience it. Roselyn loves her work, friends, family, and the staff who work with her. However, sometimes it’s wonderful to just spend some time alone.

“When we provide access to digital skills training, we create opportunities and pathways to independence that can be life-changing, especially for those living with disabilities,” said Dalila Wilson-Scott, Executive Vice President and Chief Diversity Officer of Comcast Corporation. “Partnerships, like the one we’re proud to share with The Arc, are at the heart of what drives us each day at Comcast because of the many lives we’re able to help impact. We’re so very honored to continue to grow our work together and help enrich even more lives.”

Comcast’s partnership with The Arc is part of Project UP, the company’s comprehensive initiative to address digital inequities and help build a future of unlimited possibilities. Backed by a $1 billion commitment to reach tens of millions of people, Project UP is focused on connecting people to the Internet, advancing economic mobility, and opening doors for the next generation of innovators, entrepreneurs, storytellers, and creators.

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The Arc’s Statement on the Passing of Senator Lowell Weicker, Jr.

There has never been a more influential and monumental moment in disability rights than when the Americans with Disabilities Act (ADA) passed in 1990. This legislation transformed the lives of millions of people with disabilities and continues to pave the way for anti-discrimination and accessibility. One of the lead Senate sponsors of the ADA, Senator Lowell Weicker, Jr. (R-CT), passed away on June 28, 2023, leaving behind a multigenerational legacy of inclusion. Senator Weicker was a parent of a child with Down syndrome and wanted more for our society and his son’s future than isolation and segregation. He knew firsthand that people with disabilities have diverse and rich perspectives and talents and they deserve a place in society alongside everyone else. He bridged the divides of parties, influencing his fellow members of Congress to consider disability rights as a bipartisan issue, an impact that is felt to this day.

The Arc appreciates the critical role Senator Weicker played in the development and funding of major disability programs through his chairmanship of key Senate subcommittees. He used his position to investigate and hold influential hearings on the treatment of people with intellectual and developmental disabilities, mental illness, and other disabilities in institutions at that time, laying the groundwork for future reforms. As Senator Weicker stressed in his address to Congress, “Disabled persons may represent a minority in this country, but they are a minority any of us may join at any time… you can secure to [my son] and his 43 million peers a happiness that only comes with love equally devised and administered.”

We are in awe of Senator Weicker’s courage and persistence in fighting to get groundbreaking disability rights legislation into law, as well as his ongoing advocacy for the independence and inclusion of people with disabilities.

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New Bill Would Advance Equity & Independence for Millions of Americans With Disabilities

People with disabilities and older adults want to live in their own homes and communities, and they deserve that right just like everyone else. Today, Sens. Bob Casey (D-PA), Chair of the Senate Aging Committee, Tim Kaine (D-VA), Sherrod Brown (D-OH), and Maggie Hassan (D-NH) along with Rep. Debbie Dingell (D-MI) introduced a critical bill – developed with The Arc and other advocates – that will fundamentally change how these populations live full and inclusive lives. The Arc stands unwaveringly behind the Home and Community-Based Services (HCBS) Access Act and urges Congress to pass this long overdue bill.

HCBS waivers were established under Medicaid in the early 1980s, and millions of people rely on it today for daily activities, such as dressing, bathing, meal preparation, taking medication, employment support, mobility assistance, and more. Yet HCBS has been chronically underfunded for years, resulting in a national shortage of direct care workers, years-long wait lists for access to services, and, ultimately, isolation that strips people with disabilities and older adults of their dignity.

“We know that everyone benefits when people with disabilities are a part of the fabric of their communities, not locked away in institutions or nursing homes,” said David Goldfarb, Director of Long-Term Supports and Services Policy at The Arc of the United States. “Yet this country has treated the independence of people with disabilities as an idea, not a right. One in four U.S. adults live with a disability. These are your neighbors, your relatives, your coworkers, your friends, and they deserve better. We applaud the bill’s sponsors, Senators Casey, Hassan, Brown, and Kaine, and Representative Dingell, for their commitment to helping people with disabilities live with dignity.”

The HCBS Access Act would:

  • Make home and community-based services a mandatory Medicaid benefit and increase funding for these services;
  • Provide grant funding for states to expand their capacity to meet the needs of people who prefer HCBS;
  • Make steps to improve the stability, availability, and quality of direct care providers to help address the decades-long workforce shortage crisis;
  • Provide states with resources so that caregiving workers—who are disproportionately women of color—have stable, quality jobs and a living wage;
  • Provide training and support for family caregivers; and
  • Create better evaluation measures to assess the quality of HCBS being provided.

To meet real-life people who are impacted by the inadequacies of HCBS, watch Susan’s story.

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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. 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. Visit www.thearcwebdev.wpengine.com 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.

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The Arc Mourns the Loss of Disability Rights Icon Judy Heumann

With heavy hearts, and along with the entire disability community, we mourn the loss of Judy Heumann. Judy was the trailblazer of the disability rights movement. Her contributions as an activist, spokesperson, and federal official on the national and international stages created huge changes for people with all kinds of disabilities, impacting so many aspects of life and society.

“Judy was a long-time member of The Arc Family. Her passion and commitment to the disability community was profound. She was a powerful advocate and mentor to so many. Most recently she was working towards creating the National Museum of Disability History and Culture. I look forward to Judy’s vision becoming a reality. She will be greatly missed and fondly remembered. All of us at The Arc send our condolences to her husband Jorge and her entire family,” said Laura Kennedy, President, The Arc’s Board of Directors.

“Having worked with and alongside Judy for over three decades, I struggle with finding words to express the powerful impact of her years of advocacy, leadership, and groundbreaking achievements. Her legacy will live on for generations to come, partly because she nurtured future leaders of the movement so that the civil rights work would always move forward,” said Julie Ward, Senior Executive Officer for Public Policy.

Learn more about Judy’s leadership and life on her website and in reporting by NPR.

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The Arc Announces Acting CEO Named Amidst Leadership Transition

The Arc’s Board of Directors has named Ruben Rodriguez, the organization’s Chief Operating Officer, as Acting CEO while it undertakes a national search for new leadership.

Rodriguez joined The Arc in 2019, with nearly four decades of experience in operations and finance. He has an undergraduate degree in Accounting from Pace University, an MBA in Finance and Investments from the George Washington University, he is a Certified Professional Coach, and is currently working on a Masters in Disability Studies at City University of New York.

Rodriguez works closely with the organization’s leadership to support the mission, providing day-to-day strategic financial and operational management and planning to meet the organization’s short term and long term objectives. Included in his portfolio is oversight and hands-on leadership of finance, human resources, information technology, risk management, and broad program support. Rodriguez worked hand in hand with the staff and volunteer leadership teams to successfully steer The Arc through the COVID-19 pandemic, managing major changes in how the organization operated day-to-day, coupled with the financial uncertainty in the non-profit sector.

The Arc’s Board of Directors recently announced that its Chief Executive Officer, Peter Berns, would be leaving the organization upon expiration of his contract in February. Since 2008, Berns has been at the helm of The Arc, the world’s largest community-based organization of and for people with 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.”

Rodriguez will work alongside an established leadership team while the search for a new CEO is conducted. Meanwhile, the Board of Directors has put together a committee comprised of board members, chapter and disability community leaders, and national office staff and self-advocate representation to conduct a sweeping national search. Soon, they will be selecting a professional search agency to work with them.

 

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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.