Portrait of Angeth Mayen

May 24, 2024, is a date I will never forget. Before last year, I didn’t fully understand the struggles faced by people with disabilities. I knew disability existed, but it felt distant from my everyday life. That changed overnight when I was diagnosed with Type 1 Diabetes. Suddenly, I had to confront inequities in the healthcare system, the lack of public understanding of disabilities, and how having an invisible disability can change the way you navigate the world.

I had some resources when I was diagnosed that others do not have. I have an older brother who also lives with Type 1 Diabetes, so I had someone to guide me through the toughest early months. However, when I transitioned from high school to college, I found myself navigating a system that I barely understood. For the first time, I was a disabled student, and I didn’t even know what accommodations were. I still saw myself as the same person I always was, but my body and my needs had changed significantly. I could no longer sit through a two-hour exam without monitoring my blood sugar. I needed snacks readily available. I needed breaks. I needed professors and administrators who understood.

It took me almost two months to understand what my university’s Student Disability Services office actually did. Once I connected with them, I was supported, respected, and given every accommodation I needed. That experience was validating, but some students with disabilities across the country do not have such a positive experience. It reminded me that the right to learn, participate, and succeed should not depend on luck or whether you happen to know the right resources.

Disabled students’ rights to education exist because of the Individuals with Disabilities Education Act (IDEA). IDEA is a law that guarantees students with disabilities a free, appropriate public education tailored to their specific needs. It was enacted in 1975 as the Education for All Handicapped Children Act. Before that, disabled students were often institutionalized, excluded, or denied access to education altogether. I grew up in a world where IDEA already existed, so I took it for granted. Many of us do. However, as IDEA turns 50 years old, it’s clear that merely having this law is insufficient. States are expected to follow IDEA, but their actions tell a different story.

On June 20, 2025, the U.S. Department of Education issued the annual determination letters regarding state implementation of IDEA. Each state receives a rating based on its performance in implementing IDEA, as assessed through its State Performance Plan. States fall into one of four categories: meets requirements, needs assistance (one year), needs assistance (two or more consecutive years), or needs intervention.

These ratings are important because they clearly demonstrate whether states are meeting their legal responsibilities to students with disabilities, and the 2025 figures are concerning. 

This year, ratings improved in only three states, while dropping in five states. Over the 12 years from 2014 to 2025, only six states consistently earned a “Meets Requirements” rating each year. Every other state in the country has failed to meet IDEA requirements at least once in the past decade. This means that less than half of school-age students with disabilities live in states that meet the IDEA requirements. That fact alone should be concerning. But the deeper issue is structural. It’s not that states have suddenly worsened; the system used to evaluate them has worsened. 

Starting in 2014, the Department of Education introduced the Results Driven Accountability (RDA) system. RDA aimed to shift focus from paperwork to real student outcomes. On the surface, that seems helpful. However, in practice, it created a scoring system that ranked states against one another.

Even if all states improve at the same rate, some would still end up in the lowest categories. This creates a system where it’s nearly impossible for every state to earn a “Meets Requirements” rating, regardless of their overall improvements. All states could be doing well, yet the scoring would still classify them as winners and losers. The RDA system depends too much on ranking and too little on properly assessing students with disabilities through long-term goals and accurate performance measures. This makes it hard to identify which states are genuinely succeeding and which are falling behind, leading to difficulties in determining which states need more intervention from the federal government.

However, it’s challenging to focus on fixing the inner workings of a system that is being dismantled at the helm. The Department of Education faces budget cuts and significant staff reductions, including those responsible for enforcing IDEA. When oversight diminishes, accountability decreases too. And when accountability weakens, students like me who rely on IDEA protections are the ones most impacted.

The recent government shutdown highlighted the Trump administration’s and the Department of Education’s stance on disability rights and federal oversight. The administration used the shutdown to argue that the Department of Education is merely a channel for distributing funds to the states, and they claimed that states can manage the money independently. However, this view overlooks the department’s true importance. Currently, there are proposals to move the Office for Civil Rights (OCR) and the Office of Special Education and Rehabilitative Services (OSERS) into agencies like the Departments of Justice and Labor, which lack the expertise and institutional knowledge needed to protect the rights of students with disabilities. During the shutdown, OCR cases went unresolved, and districts were unable to access important information.

Additionally, recent office closures and staff reductions have already led to thousands of dismissed cases and fewer investigations, leaving students without meaningful protections for their rights. IDEA, OCR, and OSERS are not optional programs, funds, or administrative chores; they are lifelines. They are the reason students with disabilities have a chance at equal education, and weakening them jeopardizes all of that.

If we want the next 50 years to be different from the last for disabled students, we must speak out. We need to advocate for federal investment in special education, stronger oversight, and reforms that guarantee fair and meaningful accountability. Students with disabilities deserve more than just the bare minimum. They deserve schools and states that consistently and fully meet their obligations.

IDEA transformed everything. Now we have to fight to keep it alive.

Angeth Mayen is a second year at the University of Chicago studying political science with a focus on law, public policy, and disability rights. She serves in multiple campus leadership roles and is currently a Policy Fellow with the American Association of People with Disabilities, where she researches federal programs like SSI and SNAP. She hopes to pursue a career in public interest law and policy centered on access, equity, and community impact.

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Contact: Jess Davidson, jdavidson@aapd.com; 202-975-0960

WASHINGTON, DC – The American Association of People with Disabilities (AAPD) is proud to announce the eight recipients of the 2025 NBCUniversal Tony Coelho Media Scholarship. With generous support from NBCUniversal, the NBCUniversal Tony Coelho Media Scholarship was named after Tony Coelho, a former United States Representative and the primary author and sponsor of the Americans with Disabilities Act. The scholarship is provided to undergraduate and graduate students with disabilities who are interested in future careers in the communications, media, or entertainment industries.

“NBCUniversal is honored to continue supporting the next generation of media leaders through

the Tony Coelho Media Scholarship,” said Craig Robinson, Executive Vice President and Chief Inclusion Officer. “These students demonstrate talent, ambition, and a commitment to making an impact in the industry. We look forward to seeing the contributions they will make as they pursue their academic and professional goals.”

“Like disabled people, media is everywhere and touches every aspect of life. To combat ableism, which is also everywhere, we need accurate and powerful representations of disabled people in all kinds of media. This year’s NBCU Tony Coelho Media Scholarship awardees represent the breadth of opportunities for disability representation in everything from film and journalism to music composition and printmaking. I am extremely grateful to NBCUniversal for their ongoing partnership and support of these talented students,” said Maria Town, AAPD President and CEO.

Award recipients received $5,625 each to help cover the cost of education at their current college or university. Each recipient of the 2025 NBCUniversal Tony Coelho Media Scholarship was chosen for their demonstrated knowledge and passion in media industry. The recipients were also selected based not only on their commitment and contribution to disability representation in the media, but also their future aspirations to meaningfully include and engage the disability community in their careers. During the 2025-2026 school year, NBCUniversal and AAPD will collaborate to provide several opportunities to support the recipient’s growth in their academic pursuits and career development.

Please join us in congratulating the recipients of the 2025 NBCUniversal Tony Coelho Media Scholarship! You can read the recipients’ full biographies and learn more about the NBCUniversal Tony Coelho Media Scholarship on our website. 

• Anthony McFarland-Smith (he/him), Gallaudet University: Undergraduate Freshman studying Communications Studies (Sports).
• Ashley Castillo (she/her), CUNY Craig Newmark School of Journalism: Graduate Student (Master of Arts) in Journalism. Broadcast Journalism, Concentration, Local Accountability.
• Itai Hershko (he/him), Indiana University: Undergraduate Freshman studying Media Entrepreneurship.
• John Bennett (he/him): University of Wisconsin, Madison: Graduate Student (PhD) studying Film Studies.
• Juniper Johnson (she/her), Loyola Marymount University: Graduate Student (Master of Fine Arts) studying Writing for Film and TV Production.
• Matthew Hua (he/him), Columbia College Chicago: Graduate Student (Master of Fine Arts) studying Music Composition for the Screen. 
• Rosemarie Shamim (she/her), Glendale Community College: Undergraduate Senior studying Journalism and Film
• Shanelly Nunez (she/her), Rochester Institute of Technology: Undergraduate Senior studying printmaking.

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2025 NBCUniversal Scholarship Recipients

AAPD is excited to announce the recipients of the 2025 NBCUniversal Tony Coelho Media Scholarship! This scholarship awarded eight (8) NBCUniversal Tony Coelho Media Scholarships to undergraduate and graduate students with disabilities pursuing degrees in fields in the communications, media, and entertainment industries, fostering their academic and professional development within these dynamic fields.

John Bennett

University of Wisconsin, Madison

Pronouns: He/Him

John Bennett is a PhD candidate in film studies in the Department of Communication Arts at the University of Wisconsin-Madison. He is currently completing a dissertation on the history of the international activities of the Algerian film industry from 1956 to 1984. He received a Chateaubriand Fellowship from the French Embassy in the United States in conjunction with an invitation from Paris 1 Panthéon-Sorbonne to conduct archival research for this dissertation in 2024. His chapter on French cross-cultural comedy will appear in The Oxford Handbook of Screen Comedy, and his article on Algerian international coproductions will appear in the Arab Studies Journal of the Center for Contemporary Arab Studies of Georgetown University. In his teaching, John plans to draw students’ attention to representations of disability in African cinema, such as in films by Ousmane Sembène, Djibril Diop Mambéty and Brahim Tsaki.

Ashley Castillo

CUNY Craig Newmark School of Journalism

Pronouns: She/Her

Ashley Castillo is a Afro-Latina with Cerebral Palsy from The Bronx, New York currently studying journalism as a graduate student at CUNY Craig Newmark Graduate School Of Journalism, with a concentration of Local & Accountability. She is a first generation Dominican-American to obtain her bachelors and masters degree. Her goal is to become a TV News Reporter because she aspires to become the change of how disabled people are represented and perceived in storytelling. She hopes to become the leader that her fellow television teachers have taught her of the world she was once isolated from.

The Spanish Television Channels has been an important part of inclusion for her to be part of society aside from being raised with little to none representation of her identities and being deprived of opportunities and resources. She grew up with the news team as being part of her family because her family was in a foreign country in the United States and migrated from the Dominican Republic for the American Dream. They learned to navigate New York City through their native language Spanish with the help of Univision and Telemundo. She also learns from her family’s culture by watching the Dominican Channel every Sunday growing up. Ashley is a student member of DJA, NAHJ and NABJ. Ashley hopes to make her family proud for leaving their home country to another country for better opportunities.

Her inspiration to succeed is seeing her family leave their home country and seeing other people from her family country succeed such as Cardi B and Aventura. She learned how to walk by dancing bachata with her family. Ashley was told she would not amount to anything yet has been determined to succeed with the obstacles that were made to limit her. In her spare time Ashley enjoys swimming, going to the curly hair salon, and playing on her Nintendo Switch.

Itai Hershko

Indiana University

Pronouns: He/Him

Itai Hershko is a filmmaker and storyteller who believes media has the power to shift perceptions and spark inclusion. Diagnosed with Sensory Processing Disorder (SPD) and ADHD, he uses his lived experience to create work that brings visibility to invisible disabilities. His first documentary, Making Sens-ory, explores what it’s like to navigate the world with SPD, and has been recognized by film festivals in the U.S., Europe, and India.

Outside of filmmaking, Itai is a dedicated volunteer at Camp Anchor, a summer program for individuals with physical and intellectual disabilities, where he’s learned firsthand the importance of inclusive spaces and supportive communities.

This fall, Itai will begin college, where he plans to pursue a business degree with the long-term goal of building a media company that champions authentic disability representation. He’s passionate about shifting how neurodivergence is portrayed on screen—from misunderstood to understood, from sidelined to central.

Itai is honored to be selected as a Tony Coelho Media Scholarship recipient and is grateful to NBCUniversal for supporting his mission.

Matthew Hua

Columbia College Chicago

Pronouns: He/Him

Matthew Hua is a hard-of-hearing composer based in Alexandria, Virginia. His music draws on his own and others’ experiences to create an emotional instrumental story. This fall, Matthew will begin his graduate studies at Columbia College Chicago as he pursues a Master of Fine Arts in Music Composition for the Screen. At a young age, the only way that Matthew’s medical team was able to get him to sit for treatments was to turn on a Disney film and allow him to be mesmerized by the film’s music–The Lion King was a reliable tool. Matthew maintains that, even today, film music keeps him centered and motivates him amidst the complexities of his disabilities.

Matthew aims to contribute to an industry that transformed his life. He is passionate about redefining disability with an empathetic lens in music, film, and entertainment. Most recently, Matthew was the Personnel Manager and Music Librarian for the Capital City Symphony in Washington, DC and he is currently preparing for a recording of a 60-piece orchestral work with the Budapest Scoring Orchestra. As he heads into two years of study in Chicago, he is honored to be a recipient of the 2025 NBCUniversal Tony Coelho Media Scholarship. He is thankful that NBCUniversal and AAPD share in his belief that film music has only scratched the surface of the potential of featuring artists with disabilities.

Juniper Johnson

Loyola Marymount University

Pronouns: She/Her

Juniper “Junie” Johnson is a Cameroonian-American multihyphenate, born in Inglewood, CA and now rooted in the Tampa Bay Area. She earned her BFA in Creative Writing in sun-drenched Sarasota, where she also picked up minors in Film Studies, Art History, and Photography, because one creative outlet was never quite enough. After college, Junie threw herself headfirst into the wonderful world of film, chasing the very thing that both scares and inspires her. In 2022, she joined Lambda Literary’s first-ever screenwriting cohort, studying under Amos Mac, a writer for HBO Max’s Gossip Girl. Fueled by writing mentorship, a lot of curiosity, and more matcha lattes than she’d care to admit, Junie wrote, directed, and produced two short films: Bahati and Heavy is the Head. Both projects screened on opposite coasts, reflecting the breadth of her storytelling reach. When she’s not behind a camera, you’ll probably find Junie in the DVD section of a thrift store, checking each row for the live-action Bratz movie.

Shanelly Nunez

Rochester Institute of Technology

Pronouns: She/Her

Shanelly Nunez is a student at the Rochester Institute of Technology and a passionate printmaker. She uses her art to share her culture, express who she is, and raise awareness about disabilities. Inspired by her Latinx background and life experiences, she creates prints, illustrations, and designs that give a voice to people who are often left out. Her goal is to make art that includes everyone and helps people feel proud and seen.

Rosemarie Shamim

Glendale Community College

Pronouns: She/Her

Rosemarie Shamim, born and raised in Los Angeles, California, is on her pathway towards a career in film/entertainment journalism. She believes film and entertainment have the power to unify society, sparking shared conversations and interests. As for the journalism aspect, she values how it allows us to ensure proper representation, taking deeper dives into certain stylistic choices. Rosemarie is currently attending Glendale Community College where she also spends her time as a writing tutor– often working with students with disabilities. Her next goal is to begin writing for her campus newspaper, with the intentions of spotlighting GCC’s film production crew, as well as students/staff part of the school’s Disabled Students Programs and Services. Diagnosed with ADHD around her sophomore year of high school, Rosemarie has learned the positive impacts of this disability, making it her greatest strength. This includes her passion for creativity, storytelling, and holding a closer lens to art and media. Rosemarie defines herself as a people person, valuing collaboration and doing her best to support others. In this evolving field, her ultimate goals are to reverse the popularized style of journalism that tends to focus on superficial knowledge, and rather pursue authentic stories. With this, Rosemarie is determined to use her platform to uplift the existing potential of others, especially individuals with disabilities. She is honored to receive this scholarship and is excited for what’s to come.

Anthony McFarland-Smith

Gallaudet University

Pronouns: He/Him

Anthony McFarland-Smith is a hard-of-hearing young man who recently graduated from the California School for the Deaf, Riverside. This fall, he will attend Gallaudet University, where he plans to study Communication with a focus on sports journalism. Anthony has a deep passion for sports and aims to advocate for and spotlight disabled athletes through the lens of storytelling and journalism. Over the past three years, California School for the Deaf, Riverside, has won three consecutive CIF 8-man football championships. Anthony was part of the 2024 championship team. His journey hasn’t been easy. Growing up with a hearing disability, learning ASL, transferring between two deaf schools, and losing his mother at age 16–all of these experiences shaped who he is today. Through hard work and perseverance, Anthony graduated with the California State Seal of Biliteracy on his diploma. Anthony’s goal—in college and beyond—is to use his voice through writing, reporting, and storytelling to uplift and amplify the power of disabled athletes who continue to redefine what it means to compete and inspire the communities.

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AAPD Calls for Congressional Action to Protect Federal Education Programs and Disability Rights

Washington, D.C. –  The American Association of People with Disabilities (AAPD) strongly opposes yesterday’s announcement by Department of Education Secretary Linda McMahon that the Office of Elementary and Secondary Education (OESE) and other programs will be transferred out of the Department. The Department of Labor (DoL) will now administer OESE and the Office of Postsecondary Education (OPE). These interagency agreements further the long-planned and unlawful dismantling of the department initiated by the Trump Administration. According to federal law, these programs are required to be part of the Department of Education, and only Congress has the authority to transfer them to another department.

OESE collaborates with the Office of Special Education Programs (OSEP), the Office of Special Education and Rehabilitative Services (OSERS), and the Office for Civil Rights (OCR) to promote inclusive education, enforce accessibility standards, and enhance teacher training—all of which are essential for the success of students with disabilities. Dismantling the department and splitting up these offices is prohibited without an act of Congress, weakens the expertise of education professionals, and jeopardizes the future of all of America’s students, including over 7.5 million students with disabilities.

We expect the Administration to continue its actions beyond this point, and we are increasingly concerned about its potential plans for OCR and OSEP. If OSEP actually moves into the Department of Health and Human Services (HHS), as has been suggested, it would mark a return to the segregated, medical model of disability and treating disability as a “problem” that needs to be “cured”, and addressed in separate, specialized settings instead of following the civil rights and inclusive education approach that entitles all students to a free and appropriate public education as outlined in the Individuals with Disabilities Education Act (IDEA). The Department of Education provides oversight, enforcement, funding, and programming that facilitate education opportunities for disabled students, which ultimately provides the foundation for the expectation of inclusion and integration as an adult and in other aspects of life. 

This year, IDEA turns 50. Before IDEA and the Department of Education’s work to make the promise of IDEA real, children with disabilities were educated at home or within medical, institutional settings. We cannot return to this reality that many in our community still have painful memories of. 

Join AAPD in urging Congress to act immediately to stop this transfer and prevent the dismantling of the Department of Education. We call on the Administration to reconsider this harmful move and protect the rights of students with disabilities to an inclusive, high-quality public education.

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This means Congress has until January 30, 2026, to reach a deal on funding bills for all other federal agencies and programs, except for the Department of Agriculture and the Department of Veterans Affairs.

The agreement also reinstates all federal employees who received Reduction in Force (RIF) notices – or layoffs – during the shutdown, bans new RIFs until January 2026, and provides backpay to all working and furloughed federal workers who haven’t been paid since September 30, 2025. The Office of Personnel Management has said that federal employees could start to receive backpay as early as Sunday, with a goal of getting all federal employees paid by Wednesday, November 19th.

What Does this Mean for People with Disabilities?

With the shutdown over, funding will again begin to flow to critical programs like SNAP and the Low Income Home Energy Assistance Program (LIHEAP), a program that helps many people with disabilities heat their homes in the winter.

As of Wednesday, November 12, 25% of states had not paid November SNAP benefits due to conflicting court orders, which are now moot since the shutdown has ended and Congress has appropriated funding for SNAP benefits through September 2026. The U.S. Department of Agriculture, which oversees the SNAP program, says that funds will be available to states within 24 hours; however, it may take longer for states to load the benefits onto recipients’ EBT cards. Check your state department of human services website for updates about when you can expect to receive your November SNAP benefits.

It may take up to four weeks or more for states to receive LIHEAP grants and distribute energy assistance payments to recipients. The shutdown led many states to pause acceptance of applications due to the lapse in LIHEAP funding, and many states announced a delay in the start of their winter LIHEAP program during the shutdown. Now that a funding bill has been passed into law, it will take time for furloughed federal employees to calculate and distribute funding to the states. State social services departments will also need time to accept and process energy assistance applications. As a result, some states may not be able to distribute benefits until December or even January.

If your energy assistance benefits are interrupted, contact your electric, gas, or oil service provider, explain the situation, and inquire about available arrangements and assistance. Check whether your state has a law that prohibits disconnecting utility services during the winter months.

If your state DOES have a moratorium on disconnection of utility services during cold weather months, it is important that you:

• Beware of scams. Hang up on threatening calls that demand immediate payment or request payment through gift cards, payment apps, or wire transfers.
• If you receive a call demanding immediate payment of utility bills, check your bank account and contact your utility company at its official customer service number to report the call.

Check your state department of human services website for updates about when you can expect to receive energy assistance benefits.

Medicare Extensions Included in Bill

The bill passed by Congress to fund the government and end the shutdown also extends the following provisions for Medicare:

• Telehealth flexibility: The government funding bill extends the ability of healthcare providers to offer care via telehealth until January 30, 2026. This ability was first expanded during the COVID-19 pandemic and last extended in the Consolidated Appropriations Act of 2023. This extension is retroactive to October 1, meaning that if you’re on Medicare and received healthcare via telehealth during the shutdown, your provider can submit a claim and be reimbursed for the visit.
• Delay of Medicare Payment Cuts: The bill also delays until the end of January the 2% reduction in Medicare reimbursement rates, which were mandated by the Budget Control Act of 2013. Congress must pass full-year funding bills by January 30, 2026 to further delay this cut.
• Waiver of Mandatory PAYGO Budget Cuts: The government funding agreement also waives the 4% funding cuts to Medicare, the U.S. Department of Agriculture, and other federal programs mandated by the “Pay-As-You-Go” Congressional budget rules. This means that if Congress spends beyond a certain amount, they must pay for it with new revenue or cut funding by 4% from Medicare and other programs unless Congress waives the rule.
  
  If Congress had not waived the mandatory PAYGO budget cuts, this would have resulted in reduced payments to healthcare providers, Medicare Advantage plans, Medicare prescription drug benefits, and more.

The Fight is Not Over

While the government is reopening today, unfortunately, this agreement does not extend the enhanced Affordable Care Act (ACA) premium tax credits, which are scheduled to end on December 31. Without these vital insurance subsidies, roughly 24 million Americans could face steep premium increases in 2026—some by 100% or more.

These enhanced ACA premium subsidies allow millions of people with disabilities who make too much to be eligible for Medicaid, do not have access to employer-sponsored health insurance,  or are entrepreneurs or self-employed individuals, to afford and maintain health insurance from the ACA marketplace.

Senate Majority Leader John Thune (R-SD) has promised to hold a vote on extending the ACA subsidies by mid-December as part of the deal to reopen the government; however, there is no guarantee it will happen.

The shorter-term funding timeline (through January 30) means our work is far from over. Congress will soon return to negotiations on appropriations for the full fiscal year and health insurance subsidies before January 30, 2026, and we need to keep applying pressure.

If you rely on ACA premium subsidies to afford health insurance, we want to hear from you now. Your stories about how these subsidies make coverage accessible are powerful tools to show Congress why they need to act.

Click here to share your story. You can add personal details about how the loss of enhanced ACA premium subsidies would impact your ability to keep healthcare coverage, afford critical medications, or remain independent.

Your voices will help us show how important these subsidies are for millions of Americans with disabilities and others who rely on them for affordable care.

AAPD will keep you updated as this situation unfolds.

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Contact: Jess Davidson, jdavidson@aapd.com; Catherine Clements, catherine.clements@highmarkhealth.org

WASHINGTON, DC – The American Association of People with Disabilities (AAPD) is thrilled to announce the appointment of Veronica Villalobos as Chair of the AAPD Board of Directors. 

Villalobos is an executive with expertise in human capital management, strategic planning, talent development, and employment law. AAPD is one of the nation’s leading cross-disability civil rights groups dedicated to building the economic and political power of the more than 70 million people with disabilities across the United States.

Currently, Villalobos is the Vice President for the Institute for Strategic Social & Workforce Programs at Highmark Health and Allegheny Health Network. In this position, she works to improve health care delivery and access, and leads workplace programs that foster a fair, collaborative, and empowering environment for all employees. Highmark Health has been recognized as a “Best Place to Work” for individuals with disabilities by the Disability Equality Index for the past 11 years. 

Villalobos previously worked as the Principal Deputy Associate Director for Employee Services in the U.S. Office of Personnel Management (OPM). In a prior position as Director of OPM’s Office of Diversity & Inclusion, she led efforts to increase federal employment of people with disabilities, hiring over 100,000 within five years.

Villalobos has been a member of the AAPD Board of Directors since 2021, bringing her significant experience with promoting civil rights and increasing disability employment to the organization during a critical moment for the disability community. She has been deeply involved with the organization in the last four years and was instrumental in developing AAPD’s most recent strategic plan. Her primary focus as Board Chair will be continuing to guide AAPD in its work to improve the employment opportunities and economic security for disabled people. 

“I am committed to uniting leaders across all sectors to collaboratively build a future where the talents of people with disabilities are fully leveraged and recognized. This strategic imperative strengthens every business, ignites fresh perspectives, and propels innovation across industries,” Villalobos stated. 

AAPD’s work is deeply personal to Villalobos because of her experiences as a woman living with a disability and her difficult experience trying to obtain proper care free from discrimination. This personal experience, coupled with her passionate belief that no one’s potential should ever be limited by prejudice, drove her to work in civil rights. 

“We are thrilled to welcome Veronica Villalobos as the new Chair of AAPD’s Board of Directors. A respected leader in the healthcare field and a long-time leader in disability employment, Veronica is highly committed to serving on AAPD’s board and to increasing the power of disabled people. Veronica will provide instrumental guidance and leadership as AAPD continues to advocate for equal opportunity, economic power, and political participation for disabled people,” said AAPD President and CEO Maria Town. 

In addition to naming Villalobos as chair of the Board, the American Association of People with Disabilities also named three new people to its Board of Directors: 

• Self-advocate Armando Escobedo – Tri-County Independent Living 
• Structured settlement expert Michael Goodman – NFP Structured Settlements 
• Civil rights attorney Jennifer Mathis – Bazelon Center for Mental Health Law

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“I hadn’t heard of AAPD before then, and hadn’t really been part of the national disability rights movement, and I thought it looked really interesting,” she said. “[My colleague] thought we could highlight the work of the organization. I thought that would be a good reason to apply, but also to just become more knowledgeable about the national disability rights movement.”

After winning the award in 2003, Hillman used the money to support Disability Rights International, specifically using it towards documenting conditions in locked institutions in Latin America. The initiatives that Hillman created with the money from the Hearne Award  have led to lasting change in issues like mental health reform. Specifically, the award money was used for litigation that the organization was doing against a government institution for abuses in a psychiatric institution.

“This was an institution where there were close to 500 people that were detained in locked conditions, many of them without clothing, without access to clean bathrooms,” she said. “We took what’s called a precautionary measures petition, or a petition for emergency relief, to the InterAmerican Commission on Human Rights, and began to help transform that system.”

The Hearne Award had a tremendous impact on Hillman’s leadership.  She noted that getting to connect with then-President and CEO of AAPD, Andy Imparato was transformative. A few years after winning the award, Imparato invited Hillman to join the AAPD Board of Directors. From there, she was able to meet more leaders in the disability rights community and became plugged into the national disability rights movement. 

“This really, I think, supported my individual growth, my understanding of the movement and the issues, and my ability to connect with folks,” she said.

In reflecting on the future of the disability rights movement, Hillman said she hopes to see it “continue to connect across movements and really build a powerful force for implementing the rights of people with disabilities and getting disability into spaces where, historically, it might not have been reflected or present.” She also encourages the next generation of leaders to be bold while engaging in the movement. 

“My advice would be to be bold, to be loud and proud, and fight for what you believe in, for what you need, for your rights,” she said.

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Dave applied to the Hearne Award during her senior year at Indiana University, where she created her own major in Chronic Illness Advocacy. Dave understands firsthand how important it is to be part of a community of people with chronic illnesses and disabilities.

“Growing up, I felt very isolated living with a chronic illness, and even the way that my chronic illness was addressed is often through the lens of the medical system. I felt like when I entered the disability community, it was the first time that I felt like I didn’t have to keep fighting against my illness or fighting against my disability, and that I was just accepted, and I was allowed to just live and thrive as I was,” she said.

Generation Patient fills a void in the disability space by creating that kind of space for young adults with chronic illnesses and ensuring the chronic illness community is integrated into the disability community.

“Generation Patient really focuses on young people with oftentimes non-visible disabilities who are entering school, work, having to be financially independent for the first time, and so the way that we work as an organization is trying to provide direct support to our community, to help build community and reduce isolation that comes with living with a chronic illness at this age, but also look at some of the systemic barriers that are creating challenges for our community to be able to thrive and fully be part of society with disabilities,” she said.

The Hearne Award was one of the first significant sources of funding Generation Patient received. Dave explained the substantial impact the award had on her and the organization. 

“To have received the Hearne Award meant so much to me individually as I was learning and finding myself within the disability community, but it also meant so much to Generation Patient, to able to grow our impact and really understand how we could impact more young adults with chronic medical disabilities beyond Indiana or specific states, and think through how we could expand our work nationally and now internationally,” Dave said.

Dave expressed her gratitude for the people she met and the knowledge she gained as a result of receiving the award. She said she appreciated gaining “an incredible network of other awardees to lean on and look to for their projects, because they’re all so different but really have that throughline of impacting and including people with disabilities in all aspects of programming, which is really, really exciting.” 

Since Dave received the Hearne Award, Generation Patient has facilitated 650 peer support meetings and has published research on the importance of peer support.

“It is our goal to start to increasingly build the evidence base for the value of peer support, not just as a service, but as an intervention in young adults with chronic medical disabilities, because we believe in peer support as a way to promote acceptance and management of a chronic illness,” Dave said.

As is true for all of Generation Patient’s efforts, the research is done by and for young adults with disabilities.

“We’re really excited because all of those publications have a first author as a young adult with a disability, which is really trying to change the model of what research and peer review publications look like, to have our community’s lived experience really drive what research questions and what researchers should be looking at,” she said.

Along with facilitating opportunities for peer support, Generation Patient also engages in policy advocacy. The organization has three main focuses in its advocacy work: clinical trial representation, ensuring that trials include young adults with chronic medical disabilities; reforming the patient system so that therapeutics can become more affordable; and increasing oversight of pharmaceutical and telehealth advertisements on social media. 

Dave highlighted how Generation Patient worked on the bipartisan Protecting Patients from Deceptive Drug Ads Online Act in the 119th Congress, which regulates the advertising of prescription medicines by influencers. The bipartisan bill was introduced by Senator Dick Durbin (D-IL) and Roger Marshall (R-KS)

“That was really powerful, because this was an issue that our community of young people with chronic medical disabilities were seeing as a problem and not seeing lawmakers and agencies take adequate action. Working on this legislation, recommendations for it, was really meaningful, because it came from our community of young people most impacted by the issues,” she said.

Dave hopes to continue supporting other young people with disabilities in their advocacy efforts.

“I think having led Generation Patient now for so many years, I’m really excited about empowering and ensuring that the next generation of young people with disabilities has a platform and resources to be able to continue to respond to the environments and systems that are not working for them and for us,” she said.

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Armstrong used his Hearne Award to launch the Heumann-Armstrong Award, named after Armstrong and his mentor Judy Heumann, one of the original leaders of the disability rights movement. The award has provided scholarships and mentorship support to students for three years.

Each year, Armstrong and the selection committee choose 6-12 semifinalists and six finalists, ranging in age from middle schoolers to post-graduate students. The semifinalists receive a gift card and finalists receive $1000 and the opportunity to be filmed for video interviews. The videos have become teaching tools for educators all over the country.

“I think it’s important for institutions to be built that allow for disabled students to be acknowledged for the work that they put in to make spaces more accessible,” he said. “Part of the reason why you see less disabled people in these sorts of spaces is because of the fact that the work that these students put in regularly is not generally acknowledged.”

Originally, Armstrong named the award the Heumann Award. Heumann’s life was a testament to the importance of accessibility and accommodations in education. She battled disability discrimination throughout her educational journey and sued the New York City Board of Education when they denied her a teacher’s license. She went on to lead the sit-in advocating for the implementation of Section 504 of the Rehabilitation Act and served in multiple presidential administrations.

It was Heumann herself who insisted that Armstrong’s last name be part of the award’s name as well.

“She was very actively involved. I couldn’t have asked for a better or more engaged or more zealous partner in this project than Judy was,” Armstrong said.

Armstrong explained that meeting many previous Hearne Award recipients during his participation in the AAPD Summer Internship Program in 2018 helped inspire him to apply for the award.

“One of the things that I think was so driving about meeting so many Hearne winners while I was at AAPD was being able to say, oh, all of these people are creating these sort of programs that are creating the kind of change that I want to make in the world, and being able to see that firsthand, I think was very influential towards me ultimately applying and handling the work the way that I did,” he said.

For Armstrong, the Hearne Award emphasizes the importance of giving proper funding to people with disabilities.

“I think that’s part of the magic of the Hearne award is the fact that we have so many people across the disability community who are doing really, really, really important stuff with minimal budgets or no budgets, and that cash infusion really does a lot,” he said.

Patrick Cokley, Senior Program Officer, Equity and Social Justice Partnerships at the Robert Wood Johnson Foundation, formed a lasting connection with Armstrong after serving as his mentor during the AAPD Summer Internship Program.

“What I’ve always been impressed with is Elijah has not only thought about what are the skill sets that he has that he wants to share with others, and what are the changes that he wishes to see in our community. He also has that unique thing where he’s able to connect with folks who are already enduring leaders, and not necessarily get swallowed by their work, but think about how he can continue the work that they’re doing, and in some cases, even provide innovation that goes the next step beyond,” Cokley said.

In all his work, Armstrong strives to create spaces for disabled people to connect with one another.

“All of the work that we did resulted in a community of people who, granted, go in different directions and necessarily have different interests, but there is still very tangibly a network there, which I think is really important, honestly. I feel like sort of the goal of having this project was having direct lines to the youth of the disability movement, the new generation that’s coming, and I think that’s something that was really powerful that we did very well,” Armstrong said. 

Establishing direct connections to and supporting the next generation of the disability movement was also one of Paul G. Hearne’s strongest passions – so much so that the Hearne award was established to do just that. 

Because of the Hearne Award, Armstrong has been able to increase awareness of ableism in education within education-focused professional spaces that do not often focus on disability.  Armstrong and a group of Heumann-Armstrong award winners spoke at a National Education Association conference and with leaders of the U.S. Department of Education.

“One of the things I think was coolest about the project, and specifically about all of the pomp and circumstance and the backing of AAPD with the Hearne award, was the fact that it allowed me to go to all of these other spaces where people were generally not talking about disability and say, hey, look, we need to talk about this,” he said.

The Heumann-Armstrong Award is currently paused while Armstrong finishes law school at Stanford University. He hopes to work in criminal defense after graduation because he sees parallels between the way disabled students and criminal defendants are discriminated against.

“You see the same thing happening in the criminal defense space all the time, people of color with disabilities who are overcharged, who are treated inhumanely, oftentimes for crimes that they had not even committed. And I feel like, especially considering the fact that I am from the South, that doing this work in that space is something that’s very important for me to be doing,” Armstrong said.

Armstrong looks forward to resuming the award in the future to continue supporting disabled students. 

“Part of why I think it’s so important to to bring the award back when we get the chance, is just to continue getting that pipeline, bringing in people who haven’t quite identified as disabled or are still developing their disability identity and have all this passion, all these urges, and just help bring them in to help bolster the movement,” he said.

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Easy Read is an accessible format of written language using pictures and easy-to-understand words. Easy Read materials make information easier to understand for people with intellectual and developmental disabilities, as well as English language learners, people with language processing disabilities, and others who benefit from accessible resources.

In disability spaces, there are a lot of people like himself who are a part of marginalized faith communities and have diverse backgrounds, but do not get the tools or the funding necessary to lead their own projects or to be able to be change makers in their own communities, Pervez said.

“[This project was] trying to address these ways of incorporating and including disabled people into faith spaces, without segregating us, and without trying to make us into a separate, special thing or a charity project,” he said. “It’s taking a space that already exists, and it attempts to give folks tools to be able to exist in them, and in terms of being like a tool or a gateway, I think that that’s really important as something that you can give to faith spaces and to give to the community.”

Pervez said winning the award felt like an affirmation that the community is trying to actively include and incorporate more diverse perspectives and voices.

“There’s definitely a lot of overlap in terms of disabled folks from marginalized faith backgrounds and disabled Muslims. That community has always been there, but for a fairly long time, I feel like there’s been kind of an encouragement of the charity model, rather than of the social model of disability in these spaces,” he said. “So kind of trying to push for self-advocacy by and for disabled folks within Muslim spaces is kind of an aspect of connecting communities that I feel like this touches on pretty strongly.”

The project was a collaborative team effort, as staff members were brought on to help with the Easy Read translation. This was an opportunity for Pervez to develop his leadership skills. With a background in student organizing, he didn’t have much experience with leading his own team, but quickly rose to the challenge.

“I definitely feel like it’s kind of pushed me to learn more about how to teach other people, and it’s definitely taught me more about managing other people and managing both their expectations and schedules and my own,” he said.

Since receiving the award, Pervez said he has felt driven to look for gaps in mainstream understanding within the disability community and the overlap of marginalized communities. For example, he says he has seen very little representation from mainstream disability groups dealing with Indigenous issues.

“Because the Hearne [Award] has kind of pushed me to look at and see those gaps, it in turn has made me, both in my professional and in my broader disability advocacy life, ask more often and push more often for, ‘Okay, who is not in the room with us right now? What gaps are we not touching on in this conversation?’ or ‘What can we talk about that otherwise is going to get left out of the conversation? Whose voices can we platform? Who can we bring in?’”

By pushing forward, he hopes to show other disabled folks that people from marginalized backgrounds can succeed in the disability rights movement, and that the movement can continue to adapt and grow by incorporating more diverse perspectives.

“I think that continuing to be here, continuing to push and continuing, frankly, to not shut up, is a really critical part of trying to get more people from my varieties of marginalized backgrounds in the door,” he said. “I think in turn, once those people are there, being able to continue supporting them and to continue with mentorship, movement work … the landscape of the disability rights movement can continue adopting and growing and incorporating more voices because we need them badly.”

In reflecting on the disability rights movement, Pervez says he hopes it can go broader and deeper, by helping people understand disability through the social model and recognize that disability is not a distant concept, but rather something many people already experience or could experience.

“I think that as a movement, we do a good job of embracing people and pushing people once they’re here. I think that where we can sometimes struggle is figuring out how to build that bridge with folks who have no real understanding of disability history or no real sense of how they fit in, really,” he said. “I want us to make that connection. I want us to reach people and help them understand that we aren’t a separate thing, that we are them.”

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