From Our Friends
We are happy to share news from our partner organizations because, as Helen Keller once said, “Alone we can do so little; Together we can do so much.”
More Than Spoken Words: How DSPs Help People Find Their Voice
Autism Spectrum News
Everyone has a voice, even if they don’t communicate through speech. Expression can take many different forms — from gestures and facial expressions to communication devices, pictures, and written words. When people with developmental disabilities are given the tools, support, and opportunities to communicate in ways that work for them, they can more fully express themselves, advocate for their needs, build relationships, and participate in their communities.
For Keshia Bellot, a Direct Support Professional (DSP) at WellLife Network, helping people find and use their voice is one of the most meaningful parts of the job. Through her work, she has learned that meaningful communication isn’t defined by speech alone, it’s about understanding each person’s way of communicating and ensuring they have opportunities to be heard.
“Everyone communicates differently,” Keshia explains. “Part of our role as DSPs is learning how each person communicates and making sure they have opportunities to express themselves.”
That support from DSPs can have a profound impact and is often the foundation that makes inclusion possible.
Communication Takes Many Forms While some people communicate verbally, others may rely on augmentative and alternative communication (AAC), sign language, gestures, visual supports, or a combination of methods.
Learning to recognize and respond to those forms of communication is an important part of a DSP’s role. Too often, people who communicate differently are underestimated or excluded from conversations that directly affect them. By taking the time to understand different communication styles, DSPs can help ensure that their perspectives, preferences, and goals remain at the center of decision-making.
Communication access is crucial. Studies have found that people with developmental disabilities who require communication supports often experience greater participation in their communities, stronger relationships, and improved quality of life when those supports are available (McNaughton et al., 2025).
Recent advancements in services for people with developmental disabilities have provided more opportunities for people to find and use their own voice and exercise their independence, such as Supported Decision-Making and Home Enabling Supports. Direct support workers are increasingly critical in supporting people to exercise their ability to have their own voice and make their own decisions.
NYS Office for People With Developmental Disabilities Commissioner Willow Baer said, “There is no more powerful right than the ability to make your own choices and to be able to have those choices be understood.”
Communication Creates Opportunity Keshia has seen firsthand how empowering it can be when people are given the time, support, and resources they need to communicate.
When people have access to communication tools and supportive communication partners, they are better able to make choices, participate in decisions that affect their lives, and advocate for themselves. Researchers have found that effective communication supports can increase opportunities for autonomy, social participation, and meaningful engagement within communities (Yau et al., 2024).
People with complex communication needs are often excluded from social interactions and decision-making opportunities, not because they lack the desire to participate, but because others may not recognize or support their preferred methods of communication (Taylor, 2020). This can lead to isolation and limit opportunities for meaningful engagement.
Direct support professionals play an important role in changing that experience by advocating for access in everyday settings. This might mean ensuring communication devices are available during a community outing, encouraging peers to engage with someone who communicates differently, or simply taking the time to listen and respond thoughtfully.
“When we take the time to understand how someone communicates, we’re showing them that their thoughts, feelings, and opinions matter,” Keshia says. “Everyone deserves to be included and have their voice heard.”
A person who is able to communicate their preferences gains more control over their daily life. Someone who can share their thoughts and experiences is better equipped to build relationships and connect with others. Over time, these opportunities help foster confidence, independence, and a stronger sense of belonging.
Communication Creates Connection At its core, communication is about human connection. It is how people share experiences, express emotions, advocate for themselves, and participate in the world around them. Having access to the right communication supports can open doors to opportunities that might otherwise remain out of reach.
This is one of the many reasons why the work of direct support professionals is so meaningful. DSPs are not simply assisting with daily tasks; they are helping people exercise choice, build relationships, pursue their goals, and participate more fully in their communities.
“Every person has a voice, even if it doesn’t sound the way people expect,” Keshia says. “When you help someone communicate, you’re helping them show the world who they are.”
That philosophy reflects the heart of the #MoreThanWork campaign, which highlights the many ways direct support professionals empower people with developmental disabilities to live fulfilling lives. Whether supporting communication, fostering independence, or helping someone advocate for themselves, DSPs make a difference through the relationships they build and the opportunities they create.
Where Does Dentistry Fit in the “Junk Food” Debate?
Rick Valachovic, DMD, MPH, Clinical Professor and Co-Executive Director of the NYU Dentistry Center for Oral Health Policy and Management
I’ve read a lot about ultraprocessed food (UPF) these past few years, but a recent publication combining scholarship on UPFs’ health effects with revelations about the forces that have made them ubiquitous in the American diet was well worth my time. Writing in a special issue of the American Journal of Public Health published this month, Associate Editor Nicholas Chartres, PhD, MHumNutr, describes how the corporations responsible for some of the nation’s most popular brands applied tactics borrowed from their parent companies to hook Americans on snack foods in much the same way they did with smoking.
As early as the 1960s, tobacco companies were buying up food and beverage companies. Over the ensuing decades, they applied flavoring and packaging technologies developed for the tobacco industry to make commercially processed foods more appealing. The increase in sugar, sodium, fat, and other additives to enhance the color, texture, and taste of these products made them hyperpalatable, a term best explained by the advertising slogan, “Betcha you can’t eat just one.” As a result, UPFs have been linked to cravings and overconsumption, excessive weight gain, and a host of chronic conditions.
Ultraprocessed Foods and Their Harms Today, UPFs make up more than 50% of the food consumed in the United States, with lower-income, less educated, and younger people consuming a disproportionate share of these products. What exactly are UPFs? While “junk food” is in the eye of the beholder, a team at the University of São Paulo School of Public Health studying the rise in obesity rates among low-income populations developed a system to classify foods, not by their nutrient content, but by the extent and purpose of their processing. Introduced in 2009, the Nova (“new” in Portuguese) system divides food into four groups:
Unprocessed or minimally processed (e.g., fruits, vegetables, grains, meat, and milk) Processed culinary ingredients used to cook and season meals (e.g., oil, butter, and salt) Processed foods that combine the first two groups (e.g., cheese and freshly baked bread) Ultraprocessed foods — foods industrially formulated for convenience, shelf life, and hyperpalatability An AJPH article by the lead developer of the Nova system, Carlos A. Monteiro, MD, PhD, and colleagues describes how the addition of the UPF concept can inform dietary guidance and food regulation. “A growing body of evidence links the ultraprocessed dietary pattern to multiple chronic disease outcomes,” they write, and in a separate Lancet article, Monteiro lays out that evidence, noting that “the risk of multiple diet-related chronic diseases…is substantiated by more than 100 prospective studies, meta-analyses, randomized controlled trials, and mechanistic studies, covering adverse outcomes across nearly all organ systems.”
The Oral Health Connection The connection between UPFs and oral health is more tenuous. Multiple studies find a positive association between UPF consumption and dental caries in children and adolescents, but an analysis of NHANES data found only a weak association in the adult population. The reasons for the discrepancy are unclear, but as one 2022 study points out, UPFs are heterogeneous, grouping hot dogs and instant noodles alongside starchy snacks and sugar sweetened beverages. In the case of childhood caries, it’s difficult to measure the contribution processing makes to disease when added sugars, a known risk factor, are present in so many UPFs.
“Are chronic diseases a result of the absence in our diets of foods with the vitamins, minerals, and fiber that we know are good for us, or do they result from overconsumption of things that we know to be linked to chronic diseases? It’s hard to say,” observes Jillian Kaye, MS, RDN, clinical assistant professor and registered dietitian nutritionist at NYU Dentistry. Clearly more research is needed, and Jillian would like to see it focus on the oral health impacts of nutrients other than sugar, which have been widely studied. Nutritional choices are on a spectrum, she points out, and factors such as the acid content of beverages or the consistency of foods should also be considered when determining which choices are best for oral health.
Policy Implications A variety of policy proposals have been floated to reduce public consumption of UPFs. These range from curbing UPF advertising aimed at children, to front-of-the-package warning labels, to taxing sugar-sweetened beverages. This last is most directly relevant to protecting the public’s oral health, and it has been successfully implemented in the United Kingdom, Mexico, and some U.S. cities.
The results of a recent survey indicate that Americans across the political spectrum are open to government interventions to curb consumption of UPFs. More than 80% of respondents supported government testing of laboratory-made chemicals, and roughly two-thirds favored warning labels, limits on advertising to children, and restrictions on what ingredients companies could put into food products. Even less popular policies, such as tax proposals and purchasing restrictions, were supported by 40% or more of respondents.
Of course, policy should also address the fact that people consume UPFs in part because they’re widely available and relatively inexpensive. The rising cost of fresh food has made this reality even more salient. For people experiencing food insecurity, the expense of a healthier diet may place it out of reach. Policies that remove structural barriers to healthy eating and improve food quality and accessibility are also essential to promoting better diets.
In the Dental Office While we wait for policymakers to act, what should we tell our patients? Jillian is keenly aware that the families she meets may not be able to afford healthier alternatives to UPFs. As a result, she introduced the NYC Health Bucks program in our pediatric clinic, and she regularly gives children and their families coupons they can use to purchase fresh fruits and vegetables at the city’s farmers markets. The extra cash enables them to follow through on her advice, and she’s found that empowering a child to purchase fruits or vegetables of their choosing may be an effective strategy to convert them to a healthier diet.
Jillian knows that patients will continue to eat UPFs, so she counsels moderation and encourages families to read nutrition labels to become smarter shoppers. Nutrition apps are now available to do some of the legwork, but Jillian cautions that they provide general dietary advice, which may or may not suit the user’s health needs. Additionally, some are linked to for-profit influencers who may steer users toward sponsored products. Look for the RD or RDN credential, she says, before putting stock in online advice.
“Dietitians play a really pivotal role as connectors,” Jillian told me. “In the dental office, our job is obviously to connect oral health and overall health. For example, when you’ve extracted a patient’s teeth and they’re waiting for dentures, what should they eat, especially if they have a condition such as diabetes? Dietitians can manage that and look at the whole body, not just the one part.“
Looking Ahead So where does this leave us? Despite the existence of a billing code for dental nutrition counseling, the service is only reimbursable in nine states. (New York is not one of them.) Similarly, although medical nutrition therapy is covered by most insurers, only patients with diabetes, kidney disease, or a recent transplant can access the benefit. Oral health needs do not qualify.
On the patient care front, Jillian is advocating for more interprofessional practice. As director of nutrition and interprofessional education here at the College, she is bringing nutrition and hygiene students together to better understand how they can collaborate to support patients’ oral health. Very few U.S. dental schools have a registered dietician on the faculty, and in Jillian’s view, CODA accreditation requirements for nutrition education are vague and insufficient. Ideally, all dentists should graduate feeling comfortable discussing nutrition with their patients and knowing when to refer, especially since it’s the rare dental office that has a registered dietician or nutritionist on staff.
On the policy front, last year the city of San Francisco filed a first-of-its-kind lawsuit against the country’s leading UPF manufacturers for marketing “addictive and harmful” products the industry knew were “making people sick.”
“We are in the midst of the ‘New Tobacco War,’ and litigation could play a defining role in addressing these commercial determinants of health,“ Chartres writes in AJPH. He believes the time has come for attorneys in multiple states to sue the UPF industry just as they did the tobacco companies. However various legal and policy efforts play out, UPFs are now squarely in the crosshairs of health advocates and the broader public. To the extent UPFs are contributing to the epidemic of oral disease, this is all to the good.
IEC 2025 Impact Report
IEC
We are very excited to release IEC’s 2025 Impact Report. It was a challenging year that required adaptation in a fast-changing environment. 2025 tested us, but IDD self-advocates, families, and healthcare leaders kept us focused on what matters most.
With a quickly changing landscape, we adapted to best serve people with IDD and their families. We spoke up on policy, working with partners to protect Medicaid, disability rights, and hard-won progress. At the same time, we kept building practical tools for clinicians, payers, families, and self-advocates. And we created spaces for people with IDD to be heard because we won’t solve our biggest problems without hearing everyone.
Highlights from the 2025 Impact Report 400+ medical professionals have completed our course since launch 6+ partner organizations now part of Access Smiles nationally ECHO Autism promoted our Emergency Department Environment of Care resource guide to its network of over 6.000 members in 100 countries 30+ national, state, and private sector policy leaders attended our quality measures webinar Our tools reached more people than ever. We launched the Always Uniquely Me app pilot, advanced quality measures through IIDDEAL, beta-tested our Dental Toolkit, and formed the Access Smiles Coalition. We also helped the Society of Developmental and Behavioral Pediatrics build a payment advocacy strategy and stood beside self-advocates and families.
In 2026, we’re working to expand our clinician tools, keep leading on IDD health education, and piloting a new fellowship to help people with IDD build job and advocacy skills.
None of this happens without partners, self-advocates, and supporters like you. Thank you for standing with us.
Disability: Ten Tenets of a Disability-Affirming Practice
Social Work Today
Twenty-seven percent of adults in the United States are members of the disability communities,1 with 40% aged 65 and older2—a fact about which social workers are often unaware, despite their involvement in this service sector. Given the high prevalence of disability, the status of these communities remains an area of concern for social workers who want to engage with this stigmatized and oppressed population in a respectful and empowering manner.3
Although concerns about ableism and sanism in the social work realm have been well-documented for decades, social workers most often focus on disability access and inclusion in response to policy mandates. While disability access and inclusion are foundational requirements for social work practice with the disability communities, there’s a call for a move toward what’s known as disability-affirming practice.4,5
Comparing disability access and inclusion to disability-affirming practice is akin to moving from a focus on diversity to a focus on equity, knowing that we need both. When one thinks of disability access and inclusion, the focus is on what the legal requirements are for creating an accessible practice or workplace. Our focus is also on how to carefully and thoughtfully implement laws like the Americans with Disabilities Act of 1990.6 But taking an inclusion and access frame alone, we miss an opportunity to address the widespread ableism and sanism present in both social work and in the world‚ not to mention the ways that these “isms” can become internalized among members of the disability communities.
The disability communities are more likely to experience mental health challenges as a result of societal barriers, cultural stigmas, and internalized ableism or sanism. Therapist Cat Maness7 notes that these communities are likely to have experienced disability-related trauma or stress, including discrimination, access barriers, and either mental or physical pain. It’s essential for social workers to provide accessible disability-affirming therapy for these individuals by incorporating disability-affirming approaches into treatment that ideally can improve outcomes and promote overall wellbeing. Disabled social workers recommend incorporating intersectional, antioppressive, and “critically culturally competent” practices.8
What Is Disability-Affirming Practice? This framework is focused on creating safe, healing, and validating environments in the context of social work practices that lift up the perspectives, wisdom, creativity, and experiences of various disability communities.
Building on existing commentaries about disability-affirming therapy, we propose the following tenets of an intersectional disability-affirming practice:
1. It’s vital to acknowledge as well as confront experiences of ableism and sanism in the lives of clients from the disability communities by listening to and validating those experiences. This may involve confronting attitudes that may reflect ableism or sanism, such as the idea that disability is a personal failing or that disabled individuals are “less than” people without disabilities.
2. Social workers can foster a positive disability identity.9 Research supports the notion that a positive disability identity fosters better long-term psychological outcomes. While not all clients may wish to identify as disabled (often due to fears of stigma or the idea that their disability is just a medical condition), social workers may be able to connect them with the strong online support available in the disability communities, where a positive and rich disability culture exists.
3. Social workers must learn about disability culture, acknowledging the diverse experiences within those communities. This is akin to the ongoing work of “critical cultural competence,” in which social workers continually seek knowledge about different cultures, knowing that there’s no end point to that work.10 Especially important is the need to lift up the perspectives, contributions, and experiences of the disability communities in discussions with clients.
4. Social workers must recognize that the ways members of the disability community experience the world are not only framed by disability but that other intersecting social identities (such as race, ethnicity, and gender identity) also inform their experiences in life.11 Social workers must know that disability is more prevalent among certain social identity groups, such as women, older adults, some racial and ethnic groups, and adults living below the federal poverty level.12 When social workers understand these complexities of the intersectionality of disability with social identity, they can appropriately advocate for equitable programs and resources to address the needs of specific populations.
5. Social workers can embrace central principles associated with disability practice, such as self-determination, community inclusion, the “dignity of risk,” and the principles of the disability justice movement.13,14
6. Social workers should be attentive to the power of language, acknowledging the endemic nature of ableist and sanist language in Western society. This also relates to being attentive to how members of the disability communities want to self-identify, whether it’s with identity-first or disability-first language or with person-first language, knowing that preferences will vary from person to person and there’s no one right way.3
7. Social workers must continually engage in reflective and reflexive practice15,16 to examine the ways in which they may hold ableist or sanist views or engage in unintentionally ableist or sanist behaviors.17
8. Social workers must have knowledge about chronic illness and the challenges of aging with a disability. Recent data shows that 41.6% of adults with a disability have at least one chronic illness. Training social workers in chronic illness, aging, and disability will help bridge the gap in knowledge and skills and lead to more equitable services and resources for both younger adults and those older than 65.18,19
9. Social workers must embrace working collaboratively to identify person-specific goals and objectives in their work while honoring the fact that members of the disability communities are experts on their own lives.
10. Social workers employed in research and policy must collaborate with and include people with disabilities at all research and program development levels to ensure inclusiveness and appropriate development of interventions that represent the population. Through this collaboration, social workers can produce more inclusive and appropriate evidence, interventions, and programming for this population.20
By drawing on these tenets of disability-affirming practice in addition to a focus on inclusion and access, social workers can build rich, supportive, and empowering relationships with members of the disability communities with which they work.22
— Mbita Mbao, PhD, LICSW, is an assistant professor in the School of Social Work at Salem State University. Her scholarly agenda centers around behavioral health, aging, workforce development, and issues affecting immigrants.
— Elspeth Slayter, MSW, MA, PhD, is a disabled professor in the School of Social Work at Salem State University. Her scholarly agenda centers around disability, race, and ethnicity in the addiction and child protection service sectors.
Current Issues in Disability Rights
Family Voices/Disability Scoop
Over the past year, individuals with disabilities, including children and youth, have been on the defense from major challenges to disability rights. In the past month alone, the Department of Justice (DOJ) has walked back its decades-long interpretation of Olmstead v. L.C. (1999) and the Americans with Disabilities Act through their legal memo. On July 20, 2026, the DOJ further clarified that it “will not rely upon the Olmstead Guidance in its enforcement of the Title II of the Americans with Disabilities Act (ADA).” Most of the challenges and changes impact the “integration mandate” which allows people with disabilities to receive services in the community rather than in institutions.
Department of Justice No Longer Using Olmstead as the Standard One month after publishing their legal memo on Olmstead and the “integration mandate,” the Department of Justice released a notice in the Federal Register to clarify its view on Olmstead. The notice states that “The Department will not rely upon the Olmstead Guidance in its enforcement of Title II of the Americans with Disabilities Act (ADA).”
The guidance referenced from 2011, last updated in 2020, is a Q&A on what qualifies as the most integrated setting under the ADA and Olmstead, who should be able to access services, and much more. Since 2011, courts have upheld the guidance and states and federal governments have relied on the guidance to protect disability rights. The DOJ now states that this guidance is “not enforceable” and not legally binding, which could further jeopardize community services and supports for people with disabilities. The Department cites the statement at the bottom of the Guidance as part of its justification:
“Guidance documents posted to this website are not intended to be a final agency action, have no legally binding effect, and have no force or effect of law. The documents may be rescinded or modified in the Departments’ complete discretion, in accordance with applicable laws. The Departments’ guidance documents, including this guidance, do not establish legally enforceable responsibilities beyond what is required by the terms of the applicable statutes, regulations, or binding judicial precedent.”
The Department plans to revisit the Guidance based on the Supreme Court’s 2024 decision in Loper Bright Enterprises v. Raimondo “to determine whether the Olmstead guidance is consistent with the ‘single, best meaning’ of the ADA.”
Read Family Voices’ response to the legal memo and our fact sheet in English or Spanish.
Section 504 Lawsuit In September 2024, Texas and 16 other states (Texas v. Becerra) argued that Section 504 is unconstitutional and challenged updated Section 504 rules published by the Department of Health and Human Services (HHS) in 2024. After outrage from the disability community, the states withdrew their claim. However, in January 2026, Texas and eight other states (Texas v. Kennedy) – Alaska, Florida, Indiana, Kansas, Louisiana, Missouri, Montana, and South Dakota – renewed their lawsuit on Section 504 of the Rehabilitation Act and the integration mandate.
If the lawsuit is successful, especially in combination with the new DOJ interpretation of the ADA and Olmstead, more people with disabilities may be forced into institutions for the services they need instead of receiving these services in their homes and communities.
As of July 2026, the total number of states involved in the lawsuit has dropped from 16 to three. Recent withdrawals include Indiana, South Dakota, Kansas, Montana, Louisiana, and Missouri. However, the case is still active with a briefing schedule running from May 4 to August 6, 2026.
Family Voices and Youth as Self-Advocates (YASA) collaborated to develop plain language information about Section 504, what it covers, and the original lawsuit in both English and Spanish.
Offices of Special Education and Rehabilitative Services and Civil Rights Removed from the Department of Education In June 2026, the U.S. Department of Education announced plans to move the Office of Special Education and Rehabilitative Services (OSERS) to the U.S. Department of Health and Human Services (HS) and the Office for Civil Rights (OCR) to the U.S. Department of Justice (DOJ). While the Department of Education says OSERS and OCR will keep their responsibilities and work without interruption, the shift will move core education and civil rights function into agencies not designed to oversee schools, special education, or education-based civil rights.
What services are provided by OSERS and OCR? OSERS – Office of Special Education (OSEP) and the Rehabilitation Services Administration (RSA) Oversees programs that ensure schools meet the needs for students with disabilities and help the transition from school to work and community life Distributes federal special education funding, provides guidance to states and schools, supports teacher training, funds research on effective instruction, and ensures students receive legally entitled services Office for Civil Rights (OCR) Investigates discrimination in schools, including disability discrimination The primary way families can seek federal enforcement without going straight to court What is the Individuals with Disabilities Education Act (IDEA)? IDEA is an education and civil rights law created when children with disabilities were not allowed in public schools, denied instruction, or forced into . IDEA makes free appropriate public education available to children with disabilities. It governs how states and public agencies provide early intervention, special education, and related services to millions of eligible infants, toddlers, children, and youth with disabilities.
IDEA is another piece of how individuals with disabilities can integrate into their communities.
What does this mean for families and children with special health care needs and disabilities? According to The Arc of the United States: Families spend months, sometimes years, trying to get schools to follow the law. Dividing special education and civil rights enforcement across agencies could add another layer of confusion when students can’t afford to wait.
For families of students with disabilities, the separation of special education and civil rights could mean:
More confusion about where to go when a child is denied services or accommodations Longer delays when a student is missing instruction, therapies, supports, or accessible materials Less coordination between special education oversight and civil rights enforcement More barriers when a student faces harassment, exclusion, restraint, seclusion, or discriminatory discipline Read The Arc of the United States’ overview of the agency movement: Moving Special Education Out of the Department of Education Risks Students’ Rights | The Arc
I Majored in Figuring it Out
Tim Shriver/Dignity.US
Wyatt Spalding is a Special Olympics tennis champion and one of the toughest people I know. He was born at 32 weeks and placed in a Newborn Intensive Care Unit.
By the time he was 7 months old, he’d been through 13 surgeries. As he grew into a teenager, he had major spinal surgery, multiple hospitalizations, and a seemingly endless stream of disappointments at school and then at work.
But last week, he was at the Special Olympics USA games in Minnesota working for ESPN as a reporter.
The medical challenges and multiple hospitalizations didn’t end but Wyatt Spalding kept playing tennis and basketball despite frequent pain, and severe fatigue. He still dreamed of being a champion, hitting a last-minute shot and being carried off the court to cheers and championships.
Despite disappointment after disappointment, Wyatt realized his gift was that he could see what others couldn’t. Special Olympics gave him what nothing else had: “It gave me a stage to compete,” he wrote, “to be an athlete instead of just a walking medical record.” He started a podcast, Be Unexpected, to “ask people who’d had their lives flipped upside down how they found their way back.” He came to last week’s games as a reporter because he knew that he could understand the athletes’ journey better than most. “This is what I learned from [my struggles]. I minored in failure and majored in figuring it out.”
Everywhere I went last week, I felt that same energy—the energy of people who had shifted not what they see but how they see. There was the unified basketball team from the Mississippi Delta that included kids from schools, from the boys and girls clubs, and from small towns.
At the games, they weren’t labels: they were a great team, working hard in every game on their way to a medal. There were the little children from Minneapolis who came out to the Young Athletes demonstration to prove that they were children full of potential, not children with labels. And there was my friend Stacey Johnston Gleason, who was bounced around between foster and family homes for 20 years. She’d been told that her disability was too difficult, but at the games, she was swimming the 200-yard freestyle and backstroke and breaststroke too.
I know a lot of us are discouraged about our country these days, but I continue to believe that we get discouraged in large part because of the stories we hear about each other—stories of animosity and divisiveness. I saw a different story in Minneapolis: a story of people treating each other with dignity everywhere.
It’s such a relief, and such a joy too, to realize what’s possible when we see the possibilities in each other. That’s what produces the thousands of heroic American volunteer coaches giving generously and without judgment to support their athletes; that’s what produces thousands of generous law enforcement officers who raise over $50 million every year for local Special Olympics programs and who protect the Special Olympics “Flame of Hope.” That’s what makes it possible for athletes like Wyatt to major in “figuring it out” instead of being overwhelmed and defeated.
My longtime colleague and professor of psychology at Rutgers University, Dr. Maurice Elias, tuned into this insight after reading Tami’s beautiful account last week of her visit to Berlin to promote the dignity movement. “The real point,” Maurice wrote to me, “is not to rate others on the Dignity Index but to take responsibility for our own transmission of dignity 24/7. In other words, to look at our interactions through a dignity lens/filter.”
Exactly. Sometimes, I worry that people think of the dignity movement as just the “Index.” I get it. We do promote the Dignity Index. But the Index isn’t the goal—a dignity lens is!
Just this week, members of our team were in central Florida connecting with leaders of the Central Florida Pledge, a network of dozens of businesses, faith-based institutions, educators, civic, and community leaders—all of whom want to create a culture of dignity every day across the entire region. We’re honored to be joining in this effort to help each person there see through a dignity lens. If we can do that, we can safely expect that people will be treated with dignity, and we can expect that others will treat them that way too. At the opening ceremony of the USA games, Demi Lovato and Jon Batiste performed. They were both amazing—Lovato sang her hit, Skyscraper, and I couldn’t help looking at the 3000 athletes on the field and seeing each of them as a “skyscraper” too, rising against all odds, revealing what it means to rise.
Batiste sang of freedom and transcendence as he danced around the field leading scores of dancers in what he’s called a "love riot.” When we talked after the show, he couldn’t stop marveling at the audience of athletes: “did you see them? The dances they led? The energy that was coming from them? These people—they’re…” and then there were no more words. Just his smile.
Two days later, I received an email from my friends at the Center for Action and Contemplation with a reflection about the meaning of hope from—you guessed it—Jon Batiste. Here’s what he said:
“There are so many things that we can say about the times we’re in, and so many ways to look at it…So you have to start by finding a rooting that is true and meaningful for you. That’s ultimately where we begin to find authentic joy, because joy comes from pain. It’s a transmutation and an alchemizing of pain. It shifts it into a space that is true and authentic for you, even if the circumstances around you don’t change. Deep hope can’t be suppressed by bad circumstances. Hope transcends the conditions of your circumstances…
The deepest hope is this inner knowing that the brightest light can come from the darkest moments…I’ve started to learn that hope transcends the physical. Hope is the language of the invisible. It transcends circumstances because it transcends physicality. It’s spiritual. It’s the language of the invisible realm, which is just as real, if not more real than the things we can see and touch…You work on it. You get better at it. My house could be flooded, and the roof could be on fire, and still, there’s a sense of hope I can have. I’m going to stay in that boat.”
Dignity isn’t a value or a score; it’s a way of being, like Wyatt and Stacey. Dignity is a lens—a way of seeing that awakens us to the reality that all life has value, that each of us is precious, that no pain or power can change the truth that we are each beautifully made. That’s a “rooting that is true and meaningful” as Batiste said.
And that’s a rooting that our dignity movement can build for ourselves and for each other too.
Discriminatory Provider Behaviors Contribute to Disabled People Delaying and Forgoing Medical Care
CQL
Discrimination is a social determinant of health – a condition in the environments we live, work, learn, and play that impact our health and quality of life (United States Department of Health & Human Services, 2020; World Health Organization, 2010). As Burgess et al. (2008) puts it, “discrimination damages health” (p. 906). Experiencing discrimination directly impacts people’s physical and mental health outcomes (Burgess et al., 2008; Krieger, 2014; Pascoe & Smart Richman, 2009). People who experience discrimination in healthcare are less satisfied with their care and believe the care is lower quality (Benjamins & Whitman, 2014; Sorkin et al., 2010). Those that experience discrimination are also more likely to delay and forgo future medical care, which negatively impacts their physical and mental health and can lead to secondary conditions (Hall et al., 2019; Jaffee et al., 2016; McMaughan et al., 2023; Seelman et al., 2017).
Disabled people commonly delay and forgo needed medical care, ranging from preventative to specialist visits (Akobirshoev et al., 2022). In fact, in our previous study, we found during the second year of the pandemic (2021), disabled people were twice as likely to delay needed medical care than nondisabled people and three times more likely to forgo it altogether (Friedman & VanPuymbrouck, 2022). While disabled people face structural and environmental barriers while trying to access medical care, such as a lack of transportation and higher rates of poverty, so too can a lack of provider disability knowledge and inaccessible facilities contribute to unmet medical care needs (Akobirshoev et al., 2022; Hall et al., 2019).
Yet, less research has examined the relationship between disabled people experiencing discrimination and them delaying and forgoing medical care. In fact, there is a paucity of research about the impact of discrimination on disabled people’s health in general compared to other social minority groups (Pascoe & Smart Richman, 2009). For these reasons, the aim of this study was to examine the impact of disabled people experiencing discrimination in healthcare on their likelihood of delaying and forgoing medical care. To explore this, as part of a larger study (Friedman & VanPuymbrouck, 2026), we conducted a national online survey about healthcare with 2,042 disabled people living in all 50 states and the District of Columbia, recruited through the National Institute of Health’s ResearchMatch platform (July-September 2023).
Results There was a significant relationship between disabled people experiencing discrimination from health care providers and delaying and forgoing needed healthcare. Controlling for all sociodemographics, compared to ‘never’ experiencing discrimination from health care providers, ‘rarely’ experiencing discrimination from health care providers was associated with a 2.81 increase in the odds of disabled people delaying/forgoing healthcare, ‘sometimes’ experiencing discrimination a 7.31 increase in the odds of delaying/forgoing healthcare, ‘frequently’ experiencing discrimination a 17.64 increase in the odds of delaying/forgoing healthcare, and ‘always’ experiencing discrimination a 21.75 increase in the odds of delaying/forgoing healthcare.
Advocacy
CODE OF ETHICS
NADSP
The NADSP Code of Ethics serves as a straightforward and relevant guide for direct support professionals (DSPs), helping them resolve the ethical dilemmas they face every day and encouraging them to achieve the highest ideals of the profession.
The Advocacy tenet of the Code of Ethics centers on the responsibility of DSPs to stand side-byside with the people they support in promoting fairness, opportunity, and full community participation. Advocacy is not about speaking for someone in place of their voice. It is about empowering people to speak for themselves while ensuring their rights, choices, and dignity are respected in every context.
TOP TENET TIPS
• Always advocate WITH the person you support. Don’t advocate FOR.
• Everyone, regardless of their disability, can advocate.
• Always listen carefully to the persons preferences, choices, and reasons for making a decision.
• If a person doesn’t communicates using their speaking voice, find alternative methods to help them express themselves.
• Help find ways to build skills that help people speak up for themselves.
• Be active in your own advocacy and participate in activities that promotes the direct support profession.
• Always speak up when you see systemic exclusion or unfair treatment.
• We must always promote choice, offer options, and respect the person’s decisions, even when they differ from our own views.
• Always be sure to document and follow through to ensure any concerns are communicated with other team members.
• To quote the late, great Dave Hingsburger, “Be a person’s microphone, not their voice!”
Risk reduction of cognitive decline and dementia: WHO guidelines, second edition
The WHO
Overview This publication provides updated evidence-based recommendations on interventions to reduce the risk of cognitive decline and dementia. The guidelines are designed to help health-care providers, policy-makers and other stakeholders strengthen action on dementia risk reduction as an essential public health strategy, especially given the absence of widely available curative treatment.
The second edition reflects the considerable growth of the evidence base since the publication of 2019 guidelines and expands the scope of guidance on dementia risk reduction. Alongside recommendations to promote healthy behaviors and manage health conditions associated with increased dementia risk, it introduces recommendations on reducing the exposure to environmental risk factors and implementing tailored multidomain interventions. The guidelines also identify areas where evidence remains insufficient and further research is needed, while supporting countries to integrate dementia risk reduction into policies, services and programs.
The International Journal for Direct Support Professionals
NADSP
Caregivers of individuals with disabilities—whether family members or Direct Support Professionals (DSPs)—often share the same mission, emotional investment, and challenges. In this article, Ama Brew reflects on her experiences as the mother of children with complex medical and developmental needs and recognizes that the DSPs who supported her family became trusted partners. Although parents and DSPs have different roles, both devote significant time, energy, and compassion to helping individuals with disabilities live meaningful lives.
Drawing from her doctoral research on parental burnout, Brew explains that burnout results from a chronic imbalance between caregiving demands and the resources available to manage those demands. While parental burnout and professional burnout differ, both stem from prolonged stress, emotional exhaustion, and insufficient support. She argues that burnout is not simply a family issue or a workforce issue—it is a caregiving issue that affects everyone involved in supporting people with disabilities.
Brew emphasizes that advocacy must include advocating for caregivers themselves. Too often, parents and DSPs prioritize others while neglecting their own well-being, increasing the risk of burnout and compassion fatigue. She recommends four practices to promote sustainable caregiving: mindful awareness of personal limits, establishing healthy boundaries, delegating responsibilities by seeking help, and engaging in regular self-care through rest, relationships, recreation, or reflection.
Inspired by these experiences, Brew founded The Parent Forge to provide mental health coaching, education, and resilience training for caregivers. She concludes that stronger support systems must recognize the value of both family caregivers and DSPs. By investing in caregiver well-being, communities improve outcomes for individuals with disabilities. Ultimately, families and DSPs are partners working toward the same goal, and supporting those who provide care benefits everyone involved.
Personal Care and Dementia: Practical Approaches for Hands-On Care
American Society on Aging
Providing personal care for someone living with dementia—such as bathing, dressing, or grooming—can feel overwhelming at times. These hands-on tasks often bring unique challenges, from resistance and anxiety to communication barriers. Yet, with the right strategies, personal care can become a time of connection, dignity and comfort.
Whether you’re a professional or family caregiver, this podcast provides actionable tools you can use right away to gain strategies that make personal care moments more positive, dignified and supportive for the person living with dementia.
The Performing Arts: More Than Access to Recreation for Autistic Children and Adults
Annie Kent, MA Psychology ⎸ Autism Spectrum News
The school district I attended between 4th and 9th grades included a professionally managed theater arts program. In fifth grade, my class was treated to a live performance of Pippi Longstocking. The following year, I was cast in a small, non-speaking role in Tom Sawyer. My parents enrolled me in Heights Youth Theatre classes upon starting Junior High.
Teen Theatre Ticket and Membership
Classes were held after school and during the summer. Using the Stanislavski Method, we were tutored in how to step into a role, not just to play “make believe.”
Unfortunately, I didn’t understand many of the scenarios, and, worse, failed to understand why I didn’t get it. One lesson challenged us to enact waiting for a bus in the freezing cold. How might we convey that to an audience?
At times I felt like an imposter. I learned through echoing and mimicking others. I despaired of ever having a lead role in a play but learned some social skills and, for the first time, felt like I belonged.
The program, Heights Youth Theatre, is among the oldest children’s theaters in the US. Founded in 1945, it operated under the auspices of the Cleveland Heights–University Heights Board of Education. Jerry Leonard, the group’s first director and guiding force, shaped it into a full-fledged professional children’s theater company. Heights Youth Theatre was initially the only children’s theater in the country that performed plays by and for young people that were not subsidiary to a regular theater.
In recent years, Heights Youth Theatre expanded its offerings to include programs that provide opportunities for young participants to engage in dialogue around timely social issues such as diversity, building relationships, and being equitable and inclusive. (hytstagemanager, 2022)
Structured Environment and Purposeful Engagement Long focused on Neurotypical performers, the “needs of autistic students… have not been investigated to the same level [as those with other disabilities] perhaps due to perceptions of autistic people as only engaging with theatre in educational or therapeutic contexts or as audience members, rather than as professionals.” (Glen, 2025)
The dramatic arts (Drama) tend to be a highly structured environment, which certainly aligns with the preferences of many autistic individuals who thrive on routine and predictability. The process of rehearsing, learning lines, and following stage directions provides purposeful, meaningful experiences in a controlled setting, making it easier for autistic participants to engage and succeed.
Social Skills, Communication, and Emotional Growth
Participating in theater helps build social and communication skills. Through collaborative activities—such as acting, improvisation, and group rehearsals—autistic individuals can practice eye contact, dialogue, turn-taking, and non-verbal communication in a supportive, low-pressure environment. Theater also evokes a wide range of emotions, fostering empathy, compassion, and emotional expression.
Community, Belonging, and Friendship
Theater can be a powerful basis for community. Specialized theater groups for autistic people offer a sense of belonging and mutual support. The shared experience of creating and performing builds trust, teamwork, and lasting friendships, helping to reduce isolation and increase social cohesion.
Freedom from Identity Constraints
Theater allows players to explore a wide range of social behaviors and identities beyond their everyday selves. This is often especially valuable for autistic people, who—like me—may feel limited by social expectations or their own self-concept. By taking on different roles, we can experiment with different ways of interacting and expressing ourselves, ideally leading to increased confidence and personal growth.
Reduction of Social Anxiety and Increased Confidence
Many Aspies experience social anxiety, which may make group activities daunting. Theater arts provide an incremental pathway to participation, starting with observation and moving toward more active involvement. The confidence learned from performing in front of an audience and the opportunity to “try on” less anxious personas can help reduce overall anxiety.
Personally, adopting less anxious personas was important to my social development. Among my earliest memories is self-identifying as favorite TV and movie characters. I had no sense of “Me” but had to engage socially and academically with others. Through internally “becoming” the character, I could respond as I believed that character would. How that affected my personality or outward demeanor, I don’t know, but what mattered was how I felt inside.
Activities That Simulate Real-life Interactions
Group role-playing that mimics realistic social activities encourage players to collaborate, share, and communicate. For example, participating in games of ‘store’ or ‘restaurant,’ allow children to take turns playing different roles. Such exercises promote cooperation, patience, and an understanding of group social dynamics.
Such activities are also designed to help players recognize and interpret non-verbal cues, including facial expressions, gestures, and body language. For example, children may practice noticing when a peer looks upset or when someone signals a desire to pause a game. These role-playing exercises may also incorporate resolving interpersonal conflicts, sharing, and taking turns, all of which support the development of emotional regulation and social awareness.
Improvisational theater activities encourage cognitive flexibility— “thinking on your feet”—a skill that challenges many autistic people. Regular practice in safe settings, like drama class, may help to improve the ability to respond more confidently to social situations.
Empowerment and Self-Discovery
Theater empowers autistic individuals by providing opportunities for self-expression, creativity, and independent achievement. Applause and positive feedback reinforce self-worth, while the process of preparing and performing fosters a sense of ownership and pride in one’s abilities.
Quality of Life and Well-Being
Engagement in theater arts may improve overall quality of life by offering a safe space for self-discovery, social interaction, and creative fulfillment. The transformative “magic” of theater lies in helping individuals of any age become comfortable with themselves and share their unique perspectives with others.
Important Considerations and Challenges
Sensory Sensitivities: Traditional theater environments can be overwhelming due to loud sounds, bright lights, and crowds. Sensory-friendly performances and accommodations are crucial for accessibility.
Individual Differences
Not all autistic people will enjoy or benefit from theater. The suitability of any given program depends on the individual person’s interests and the culture of the group.
Autistic individuals often have heightened sensory awareness, insight into autistic social challenges and differences, a strong understanding of our thought processes and problem-solving approaches, and clear insight into our emotional states, despite the challenge of expressing these emotions to others. and differences. These challenges may discourage some neurodivergent people from trying theater.
My memories of Youth Theater are emotionally mixed. I met my best friend there, and she’s still my best friend many years later. We dreamed of leading roles, or at least important parts in plays. But auditions terrified me. I could sing well enough to be in the school chorus and choir for three years. But when I tried to sing in front of the Director, Mr. Leonard, my vocal cords froze. I was so afraid of being judged by my peers, and especially by him.
He was, after all, a Professional. During rehearsals, he could be overheard yelling, “You are replaceable.” He was a strict, no-nonsense teacher and mentor who pointed out our mistakes, determined that we would learn from them. On the other hand, to be praised for a job well-done filled us with joy and boosted our confidence.
Mr. Leonard tried to find some way for every child in the program to involve themselves in productions. If you didn’t get a part in the play, he would offer behind the scenes roles. I was too young for the Teen Theatre summer musicals but was always offered a job as an usher at Cleveland’s historic Cain Park amphitheater. Even that provided a sense of inclusion and belonging.
Recently, I found some Heights Theatre memories and comments on social media. ‘Tom’ wrote:
My few years at Heights Youth Theatre taught me about people in the theatre. From my high school, I learned fear, scorn, and a deeply mined ambivalence to learning or growing.
[Heights Youth Theatre] might as well have been an alien world. Here were people that actually loved. And shamelessly embraced me, my lowly, undeveloped talent, and welcomed me into their little artistic home. I was caught in a wave of serendipity and flabbergasted by love. For all of you with your welcome arms, I thank you… (HEIGHTS YOUTH THEATRE ALUM – the JERRY LEONARD DAYS | Facebook, 2026)
I only engaged in drama through my university years and auditioned for the occasional production thereafter. But I feel fortunate to have had the opportunity to access theater classes. While I can’t identify all the ways it benefitted me, in retrospect, I know it did.
Conclusion
Theater can be profoundly beneficial for people with autism, offering structured opportunities for social learning, self-expression, empowerment, and community. With savvy accommodations and inclusion practices, the performing arts become a welcoming space where autistic individuals thrive and enrich the creative world with their unique talents and perspectives. With more neurodivergent leadership and advocacy today, theater could rival psychosocial therapies in improving the lives of autistic people.
Apple Readies Movie About Prominent Disability Rights Activist
Shaun Heasley ⎸ Disability Scoop
A feature film about an activist known as the “mother of the disability rights movement” is set to debut.
“Being Heumann” will premiere as the opening night film at the prestigious Toronto International Film Festival.
The movie from Apple Original Films is about Judy Heumann who was instrumental in fighting for civil rights protections for people with disabilities. It is based on Heumann’s book “Being Heumann,” which tells of her experience leading more than a hundred people with disabilities in a 1977 sit-in at the San Francisco Federal Building. The action lasted nearly a month and pressured the government to enforce Section 504 of the Rehabilitation Act, a law requiring federal spaces to be accessible.
Heumann, who died in 2023, was left unable to walk after she contracted polio at age 2. Her parents were told to institutionalize her, but instead fought to enroll her in school. As an adult, Heumann was denied a teaching license from the New York Board of Education because they worried she would not be able to evacuate in an emergency, but she ultimately became the state’s first teacher in a wheelchair.
Heumann was instrumental in developing and ensuring implementation of the Individuals with Disabilities Education Act, the Americans with Disabilities Act and the U.N. Convention on the Rights of Persons with Disabilities in addition to her activism related to Section 504.
The movie about Heumann was adapted, directed and produced by Academy Award-winner Siân Heder who wrote and directed “CODA,” the first film with a predominately deaf cast to win an Oscar for Best Picture.
“Being Heumann” stars Ruth Madeley, who has spina bifida, as Heumann alongside Mark Ruffalo, Dylan O’Brien, Rob Delaney, Daniel Durant, Madeline Delp and Ray Fisher.
“We’re thrilled to open this year’s festival with Siân Heder’s inspiring follow-up to her Oscar-winning ‘CODA,'” said Cameron Bailey, CEO of the Toronto International Film Festival. “‘Being Heumann’ features an electric performance from Ruth Madeley in the story of Judy Heumann, a world-changing advocate for accessibility.”
“Being Heumann” will premiere Sept. 10 at Roy Thomson Hall in Toronto.
Rare Disease Curriculum
Global Genes
Global Genes is excited to announce the launch of the Rare Disease Curriculum, a new seven-module, self-paced online learning program developed in partnership with the Rare Disease Diversity Coalition (RDDC).
Whether you're a healthcare professional, caseworker, patient, caregiver, or advocate, this curriculum was built to meet you where you are. Each module includes clear learning objectives, culturally relevant content, so you can learn at your own pace and on your own schedule.
Our goal is simple but urgent: close the persistent gap in rare disease education across the healthcare system. That means helping providers recognize warning signs earlier, correcting common misconceptions, and connecting patients to the right resources sooner, so that diagnostic delays shrink and outcomes improve for the millions of people living with a rare disease.