“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.

The post Paul G. Hearne Profile: Alison Hillman appeared first on AAPD.

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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When Ladau received the Hearne Award in 2018, she used the funding to start the Rooted in Writing Fellowship to support disabled writers in telling their stories. As part of the fellowship, two disabled writers wrote a series of blogs for publication on the Rooted in Rights website and developed a long-form article to pitch to mainstream media outlets. 

The writers focused on a variety of topics, like voting rights, intersectionality, and transportation access. Ladau guided them throughout the writing process and provided mentorship and networking opportunities.

Ladau credits the Hearne Award with solidifying her role as a storyteller.

“It was really meaningful for me because I had been passionate about storytelling for so long and I wanted to extend that as far as I could, because it’s not my story that I’m concerned with, it’s how do we get as many people as possible into a place where they have the opportunity to tell their story?” Ladau said. 

“So getting this award, to me, was kind of confirmation that I could continue to lead the way, along with so many other people, to push the power of storytelling as one of the key ways to shift the narrative and bring about positive change for the disability community,” she continued.

When Jordan Melograna, now the CEO & Creative Director of Block by Block Creative, LLC,  ran video and social media storytelling for Rooted in Rights, he knew Ladau was the right choice to lead the program’s new blog.

“She has elevated countless other voices in her work, including people in the disability community who even the disability community often overlooks. Beyond the work Emily did at Rooted in Rights, she has become a leading voice for inclusion,” he said.

“She educates as well as persuades through her writing and public appearances. Emily is a fierce advocate, but a warm soul,” Melograna continued.

Running the Rooted in Writing Fellowship taught Ladau valuable leadership skills. 

“I got a really good lesson in how to be a better support and a better leader and a better manager of people, and I learned how to meet people where they are and to understand that everyone has different workflows, different writing processes, different ways of thinking. And so for me, it was just a really strong professional development experience because I had to learn a lot about myself while I was learning a lot about other people,” she said.

AAPD impacted Ladau’s career trajectory even before she received the Hearne Award. In 2013, she participated in the AAPD Summer Internship Program. Her assigned mentor, Day Al-Mohamed, suggested that Ladau start a blog, which helped launch her down the path of using storytelling to advance inclusive narratives about disability. 

Ladau interned at the Association of University Centers on Disabilities (AUCD) during the Internship Program. She connected with Rooted in Rights at an AUCD conference, which led to a job and ultimately her application for the Hearne Award.

“There’s a very clear trajectory of how I got to where I am because of AAPD, and even in the years since the Hearne Award, have continued to stay connected with them for various professional opportunities. So I feel like the best way that I can explain it is that once you’re part of that ecosystem, if you continue to stay connected, it pays professionally in dividends, and it pays community-wise in dividends,” Ladau said.

Beyond just elevating her to new heights in her writing work, the award also expanded Ladau’s ideas for future endeavors. Ladau’s experience leading the Rooted in Writing fellowship was one reason she felt confident enough to pursue other writing projects, including her book Demystifying Disability: What to Know, What to Say, and How to Be an Ally, published in 2021. 

“It gave me the confidence to continue pursuing projects that were so beyond what I kind of dreamed for myself. Getting the award was like a turning point in my career, such that I could point to it and I could say, here’s where my work has been recognized, and I want to continue building on that in the future,” she said.

Since receiving the Hearne Award, Ladau has continued to platform other disabled writers, serving as editor of other publications, like the Voices of Disability Economic Justice Project through the Century Foundation, and Able News.

Kim Knackstedt, Founder and Principal Consultant of Unlock Access, worked with Ladau at the Disability Economic Justice Project. She praised Ladau’s personable and approachable manner to storytelling.

“What’s really important about Emily is she is leading in a way that does actually influence policy, but she influences it by narrative and by elevating voices and perspectives, and she does it where it’s not about self-promotion in any way,” Knackstedt said. 

“She does it by really trying to kind of bring stories to life, and that is something that I just don’t see really anyone else doing in quite the way she’s doing,” she continued.

Ladau believes that disability representation in the media is a crucial tool for policy advocacy. She hopes that aspiring disabled writers believe in the power of their own voices.

“Your story has worth because it’s your story, and so if we start from that place of recognizing the worthiness and the power of our own story, and not seeking the validation from others, and not feeling that it belongs to anyone but us, I think that’s where we really draw our power from,” she said.

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However, it was his involvement with the American Association of People with Disabilities (AAPD) that paved the way for him to engage in regional, national, and international cross–disability initiatives.

“I have dedicated my entire life and career to supporting the cross-disability rights movement across the political spectrum and bringing together people with different ideologies and different disabilities, all with the shared philosophy of wanting to ensure that we as people with disabilities are given the same kinds of opportunities to grow and succeed, just like everybody else,” he said.

Eve Hill, who was the executive director of the Disability Rights Legal Center at the time, nominated Cantos for the Paul G. Hearne National Leadership Award, which he received in 2001. 

Cantos used the money he received through the award to support and strengthen the Disability Rights Legal Center by expanding outreach efforts and ensuring that they could reach cross-disability organizations and those that support other marginalized and disadvantaged populations. That led to the creation of the Disability Rights Roundtable, which created six coalitions supporting different policy objectives and expanded the Southern California Disability Rights Leadership Conference. 

“When I received the Hearne Award, it was amazing, because nowhere was there an award like it, nowhere could emerging leaders not only end up receiving recognition, but also receive the resources needed to build specific initiatives,” he said. “When I got it, I was super surprised, and on top of that, to have additional resources to do what I love, it was just really a life-changing event for me.”

The Hearne Award opened up the door to a vibrant career in cross-disability rights for Cantos. He went on to join AAPD as general counsel and Director of Programs, where he contributed to the further development of Disability Mentoring Day, an idea created by Jonathon Young that started at the White House and has since expanded to programs and disability mentorship events in all 50 states,  Washington DC, Puerto Rico, and 11 foreign countries across five continents. Cantos went on to join the federal government, including the U.S. Department of Justice, the White House, and then the U.S. Department of Education.

“The wonderful thing about the Hearne Award is that it is not merely a means to recognize emerging leaders, but it also, and more importantly, provides us with the resources needed to expand our dreams of what we wanted to do to contribute to the cross-disability rights movement, and that is exactly what ended up happening in my case,” he said.

He continued: “It set into motion an incredible chain of events that has led to my personal growth as well as my professional growth, and I am eternally grateful to AAPD, not only for what it has done for me, but also what it has helped me to do for our movement. As we continue to build stronger and better still, we get to support emerging leaders of today, where we now are the forebearers of a new generation.” 

Cantos said he’s grateful for AAPD and recognizes the tremendous impact the organization has had in creating connections, providing resources, and supporting emerging leaders in the disability rights movement, pointing to the roster of distinguished awardees and the work in disability rights that they have gone on to do in their careers.

“AAPD has played a vital role in my life, and it is because of AAPD that I am forever grateful for the life that I continue to live and for the ways that I have been able to pass on lessons to new generations based on what I was taught right here,” he said.

In reflecting on the future of the disability rights movement and advice he would give to young emerging leaders in the disability community, Cantos said he encourages everyone to continue the legacy of the disability rights movement by learning from the past, being actively engaged in the present, and preparing to mentor future leaders.

“There is always an ongoing opportunity for us to grow in love and in influence by looking at our own personal talents and abilities and strengths and then taking those and applying those to ensuring that fellow people with disabilities get to experience broader opportunities than may have been enjoyed in the past,” he said. “As we keep doing that together, that’s where we’re going to be able to strengthen our movement eternally.”

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“[The Hearne Award] brings you connection to people that you might want to work with,” she said. “I think that was the biggest reason why I applied for the Hearne Award. It was encouragement, but also it was an opportunity for connection.”

Smock said that winning the award in 2012 for her community organizing was very validating and affirming, especially since that work isn’t broadly recognized and rarely funded.

“I feel like my role [in the disability rights movement] right now is very much about building again, building capacity and building people’s ability to figure out what it means to do impactful advocacy work and build meaningful partnerships and get through difficult conversations,” she said.

She applied with the intention of creating an opportunity for the disability community to talk more about the importance of community organizing, especially in the years following the passage of the Americans with Disabilities Act (ADA). 

“There was an enormous amount of community organizing that went on to get the ADA passed, but it felt like in 2012 things were changing again,” she said. “People were building a different framework for how we live our lives as people with disabilities through disability justice and other means.”

“It felt like there was an opportunity to bring in more people and bring in more new people who hadn’t been involved in disability before, so I wanted the Hearne Award to be an opportunity to talk more about that,” she continued.

Deaf people such as herself working in centers for independent living were “a bit of a unicorn,” Smock said, noting that Deaf people tend to opt for Deaf-specific spaces rather than cross-disability ones due to some Deaf advocates believing that Deafness isn’t a disability and some disability advocates believing that Deaf inclusion is challenging or expensive. However, Smock sees value in cross-disability work and integration, and believes that Deaf leadership and inclusion can bring joy and diverse communication perspectives.

“I’m not just a policy advocate or an organizer or person with a disability or Deaf person. I am all of these things combined, and that can be a pretty powerful combination. So the Hearne Award felt like it was really affirming a cross disability approach rather than a siloed approach,” she said. 

Smock’s work touches on all three of the themes the American Association of People with Disabilities (AAPD) has adopted for its convening to celebrate 25 years of the Hearne Award: bold ideas, connecting communities, and lasting change. For example, Smock is a part of a professional development cohort-style leadership pipeline for disabled professionals in Chicago called Disability Lead. Through mentorship and connections fostered through this network, she and her mentee advocated for disability and hospice care for incarcerated people, which led to the passage of a bill to start tracking and monitoring hospice programs in Illinois prisons.

“Who thinks about hospice and disability? Well, I do, but how [do] you make the change? You connect people,” she said. “These folks are going to keep working together, and that is going to create lasting change of some kind…I think the Hearne Award is designed to recognize that kind of ability.”

In reflecting on AAPD’s 30th anniversary, Smock said that AAPD deserves a lot of credit for its capacity building and leadership. She emphasized the importance of listening to marginalized people, especially following the effects of the pandemic and the current presidential administration. 

“My advice is about exposure. Learn about people and ways of life that are not yours. Understand how to build connections across that, because it’s really what’s going to save us in the end,” she said.

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Acetaminophen – a medicine that helps get rid of fevers and pain. Acetaminophen is also called Tylenol.

Autism community – autistic people and the people who support them. The autism community includes:

• Autistic people
• Family members of autistic people
• People who do research about autism
• Medical professionals; and 
• Groups that work with autistic people.

Department of Health and Human Services (HHS) – a part of the United States government that works on health care. The Department of Health and Human services gets called HHS for short.

Interagency Autism Coordinating Committee (IACC) – a group of people in the autism community that works with the government. IACC has meetings about problems that affect autistic people.

Leucovorin – a kind of medicine. Doctors usually give leucovorin to people who have cancer.

Press conference – an event where someone shares important news with a lot of news reporters. News reporters ask questions about the news at the press conference. 

RFK – a short name for Robert F. Kennedy, Jr. RFK is in charge of the Department of Health and Human Services.

On September 22nd, government leaders said dangerous things about autism that are not based on facts. They said these dangerous things at a press conference. A press conference is when the government shares important news. News reporters ask questions about the news at the press conference. 

These are some of the dangerous things government leaders said at the press conference:

• They said that pregnant people should not take acetaminophen. Acetaminophen is a medicine that helps get rid of fevers and pain. Acetaminophen is also called Tylenol. RFK and President Trump said that acetaminophen causes autism. The best science shows that acetaminophen does not cause autism. A baby can not get autism from their parent taking acetaminophen. A baby can not get autism from taking acetaminophen. Doctors who take care of pregnant people and babies say that acetaminophen is safe.
• They said that parents should give their autistic children leucovorin. Leucovorin is a kind of medicine. Doctors usually give leucovorin to people who have cancer. Doctors also give leucovorin to people who are missing a certain kind of vitamin in their body. Scientists have not done enough research about how leucovorin affects autistic kids. Also, every autistic person is different. What helps one autistic person might not help another autistic person. 
• They said that vaccines cause autism. RFK has been saying that vaccines cause autism for a long time. But vaccines do not cause autism. Vaccines are safe. Vaccines help stop people from getting really sick. You can read a plain language resource about vaccines and autism here.

RFK and other government leaders should listen to autistic people about what we need. RFK and other government leaders should work together with the autism community. The autism community means:

• Autistic people
• Family members of autistic people
• People who do research about autism
• Medical professionals; and 
• Groups that work with autistic people.

HHS could do a lot of things to make autistic people’s lives better. HHS has not made a lot of chances for the autism community to share thoughts about HHS choices. There is one group that was made for the autism community to talk about policy choices with government leaders. The group is called the Interagency Autism Coordinating Committee. The Interagency Autism Coordinating Committee is called IACC for short. IACC has not had a meeting in many months. There is a law that says IACC has to have meetings. The law is called the Autism CARES Act. Government leaders should make an IACC meeting happen soon to listen to the autism community. 

Autistic people need supports that help us succeed. We need to be able to choose the services we get. We need resources that help us. We need resources and policies that help the people who support us, like our families. Autistic people and their families deserve respectful support.

The post Plain Language: Leading Autism and Disability Organizations Call for Decision-Making Based on Quality Science and Compassion for the Autism Community appeared first on AAPD.

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

WASHINGTON, DC – On April 26, 2024, The Department of Health and Human Services (HHS) issued a final rule regarding section 1557 of the Affordable Care Act (ACA), which prohibits discrimination based on race, color, national origin, sex, age, or disability in covered health programs and activities.

“The American Association of People with Disabilities applauds HHS for publishing this long-awaited rule that revises Section 1557 and strengthens nondiscrimination protections for people with disabilities and other populations that have experienced discrimination and barriers when trying to obtain equal access to quality healthcare, said Michael Lewis, AAPD Vice President of Policy. 

“Healthcare settings have a disproportionately large impact on disabled people’s quality of life. Healthcare settings are where medical practitioners and patients first establish disabled people’s diagnoses, define treatment and health management options, and ideally help improve disabled people’s quality of life.  People with disabilities have a right to quality, accessible, and affordable healthcare and health insurance that is free of any type of discrimination so that we can live our most fulfilling lives,” said Maria Town, AAPD President and CEO.  

“The protections established in this rule are especially meaningful because they provide protection not only for disabled people as a community but especially for multiply marginalized disabled people, such as disabled people of color or LGBTQ+ disabled people. Multiply marginalized disabled people are the most likely to face discrimination or substandard care when trying to receive healthcare. The protections in this rule are meaningful for LGBTQIA+ people, disabled people, Black, Indigenous, and people of color, pregnant and parenting people, older people, and more – a powerful reminder that disabled people are part of every single community, and our rights and protections should reflect that reality” Town continued. 

The rule expands the application of 1557 rules to apply to all health programs or activities that receive HHS funding or are administered by HHS, including hospitals, health clinics, health insurers that participate in State insurance marketplaces or marketplaces that receive HHS funding, state Medicaid programs, and physicians’ offices that accept Medicare or Medicaid.

Specifically, the new rule: 

• Extends the 1557 protections to health insurance issuers that receive Federal funds, including issuers that participate in federally funded and State health insurance Marketplaces;
• Clarifies that “discrimination on the basis of sex” includes discrimination based on sexuality, gender identity or expression, pregnancy or related conditions, sex characteristics (including intersex traits), and stereotypes. This provision updates the section 1557 rule to align with the Supreme Court’s 2020 decision in Bostock v. Clayton County, which held that Title VII of the Civil Rights Act of 1964’s prohibition on sex discrimination encompasses gender identity and sexuality;
• Requires effective communication and reasonable modifications for people with disabilities, which includes accessibility standards for buildings and facilities, as well as ensuring that health programs or services offered electronically (e.g., telehealth) are accessible for people with disabilities;
• Requires that all health insurance coverage and other health-related coverage be provided in the most integrated setting appropriate to people with disabilities, bringing section 1557 rules in line with the Supreme Court decision in Olmstead v. L.C.;
• Covered entities must provide and post notices informing patients of their civil rights under section 1557 of the Affordable Care Act, provide a process to file grievances, and designate an employee to coordinate compliance with the rule;
• Mandates that covered entities post notice of the availability of language assistance services and auxiliary aids are available free of charge to individuals with disabilities and limited English proficiency in prominent places on their website and within their facilities in the 15 most commonly spoken languages;
• Requires that entities take action to mitigate harm from the use of patient care decision support tools (such as Artificial Intelligence or algorithms) that use input factors such as color, national origin, sex, age, or disability, and;
• Mandates that covered entities provide staff training on implementation and compliance with these policies and procedures

AAPD looks forward to working with HHS to implement this regulation and continuing to work diligently to improve healthcare services for disabled Americans.

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