From Our Friends
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Safeguarding Health For People With Intellectual And Developmental Disabilities: Absent Federal Leadership, Others Must Step Up
Given the dismantling and fracturing of the federal health infrastructure, intellectual and developmental disabilities (IDD)-focused organizations should coalesce and step into the breach. They must exert leadership as a community to promote the health and well-being of the IDD population.
Recent federal actions have eliminated or weakened multiple programs and federal initiatives intended to improve the health and well-being of people with intellectual and developmental disabilities (IDD). We maintain hope that federal leaders will change course. In the meantime, we must consider new agents of authority and credibility when it comes to: maintaining trustworthy health information, funding direct services and research, and coordinating long-term health priorities across sectors.
While states, non-governmental organizations, and advocates have long recognized and supported people with IDD, the federal government has been the source of essential laws, policies, and resources to improve the health and well-being of people with IDD in communities. Given the dismantling and fracturing of the federal health infrastructure, IDD-focused organizations should coalesce and step into the breach. They must exert leadership as a community to promote the health and well-being of the IDD population.
Lack Of Leadership Magnifies Health Risks For People With IDD People with IDD, including conditions such as autism and Down syndrome, number more than 17 million in the US, with growing prevalence across every sociodemographic subgroup. Life expectancy for people with IDD has increased over the past half century, but they still experience higher rates of chronic conditions such as diabetes, mental health challenges, obesity, maternal mortality, COVID-19 mortality, and preventable deaths. Moreover, the health system remains poorly prepared to provide services and supports in a manner that comports with the core disability values of self-determination, access, and community integration. Most clinicians receive minimal training about IDD, hold outdated assumptions about people with IDD, and do not feel confident in their ability to provide high-quality care. IDD specialists are scarce, and as people with IDD live longer, they need clinicians of all kinds to be prepared to work with them. In many states, people with IDD face long wait lists and insufficient availability for home- and community-based services such as in-home, residential, and employment supports, as well as affordable housing assistance.
The past 70 years have seen persistent advocacy aimed at supporting better health for people with IDD. This has resulted in significant public-sector progress, such as:
funding for clinical training programs, investments in IDD data and research, bipartisan legislation to finance home- and community-based services, establishment of developmental disability councils, regulations prohibiting discrimination against people with disabilities in medical treatment, regulations requiring all health care providers and programs to be physically accessible and provide other accommodations to people with disabilities, and public health monitoring of IDD conditions. Unfortunately, much of this progress has been or may be reversed due to cuts in funding and staff at the Administration for Community Living, the Health Resources and Services Administration, the Centers for Medicare and Medicaid Services, and the Centers for Disease Control and Prevention. Federal decisions to limit vaccine access and anti-vaccine guidance may also have disproportionate effects for people with IDD, who are at higher risk of vaccine-preventable diseases such as COVID-19 and higher mortality from such conditions. More generally, a growing federal focus on causes of, and treatments for, conditions such as autism may sap attention from policies and strategies to help people with IDD live their fullest lives. In such a climate, even speculation about the creation of a federal database on autistic people raises fears of a mandatory registry, social segregation, and other potential harm.
Cohesion In IDD Health Must Now Come From Dispersed Authority And Leadership Across Multiple Groups These federal actions have sown mistrust within the IDD community and among clinicians, researchers, and other service providers. This, in turn, creates a void where misinformation, misuse of data, and other harmful developments could fester. Moreover, such sudden policy swings and partisan conflicts raise fears that once-bipartisan support for people with IDD and other disabilities could fray. The US needs a credible coalition of private-sector groups and states to act as alternative sources of credible information and thought leadership. Below, we offer examples of how a range of respected actors could respond in specific areas to stimulate thinking and action.
Producing Disability-Specific Health Guidelines And Advisories Some federal actions create confusion, such as the decision to restrict COVID-19 vaccines to older adults and those with chronic conditions that do not include IDD, despite research showing higher risk of serious illness and death for both children and adults with intellectual disability. In response, other organizations should fill the gap and provide expert guidance. The extent to which these organizations are successful may affect the health of a generation of people with IDD.
As some have already demonstrated, individual or groups of clinical societies have the expertise to credibly issue health recommendations on specific topics such as vaccinations, prevention, and treatment of co-occurring conditions such as dementia. The American College of Physicians and American Academy of Pediatrics or other primary care societies—and those of specialties such as the Society for Developmental and Behavioral Pediatrics, or the American Academy of Developmental Medicine and Dentistry—are best positioned to issue recommendation for the IDD population. The Association of State and Territorial Health Officials (ASTHO) and the American Public Health Association bring complementary expertise on population health and have established channels for rallying public attention to specific health threats. They should work with people with lived experience and other IDD experts to shape appropriate public health outreach.
Collecting And Stewarding National Data On IDD Populations It remains unclear whether the Centers for Disease Control and Prevention will continue to report population health data on autism and other IDD conditions. Historically, the agency has been the major source of information on trends in incidence and prevalence.
If necessary, ASTHO should partner with national and local disability advocacy organizations to lead new efforts to conduct community-specific monitoring and national surveys to track IDD prevalence and health experiences. Private funders could support such efforts.
Monitoring Uses Of Person-Level IDD Data While the US does not have a registry of people with IDD, federal leaders have expressed interest in developing a comprehensive database on at least autistic people. To be sure, population-level data on IDD provides important information for shaping policies. But large-scale collection of person-level data as was proposed by the Trump administration raises concerns about privacy and safety in the context of highly stigmatized conditions. Such approaches to data collection raise the specter of policies undermining an individual’s perceived value in society, their access to services, and their self-determination. The availability of insurance claims, the National Health Interview Survey, and person-level and household-level socioeconomic and metadata can be purchased from multiple commercial sources. This could make it possible to label people with IDD and use such information in harmful ways, such as to discriminate in decisions about public benefits, employment, or clinical services. These possibilities become even more fraught when considered in light of our country’s history of:
forced institutionalization of people with IDD; overuse of psychotropic medications, chemical restraints, and physical restraints; and public or private uses of data on IDD status to “label” identifiable people with IDD without their knowledge and input. It is certainly possible to use person-level databases on IDD in safe and ethical ways. But that would require deliberate involvement of people with IDD in constructing and governing those databases, facilitated by trusted organizations that steward the data. Academic leaders such as University Centers for Excellence in Developmental Disabilities, policy research organizations, or the American Association on Intellectual and Developmental Disabilities should create a “registry of registries” where research groups can publicly share their plans for use of IDD data, allowing advocates to monitor data activity through a deliberate governance process.
Setting A Consensus National Research Agenda The Children's Health Act of 2000 created the federal Interagency Autism Coordinating Committee (IACC) to advise the secretary of the Department of Health and Human Services (HHS) on autism spectrum disorder; coordinate federal activities related to autism research, services, and policy; and work with the autism community to improve communication and collaboration. However, a number of new IACC members were recently appointed whose focus is weighted heavily toward biological causes of and treatments for autism, instead of understanding access to and quality of services to help autistic people thrive. To address this gap, private organizations such as the Institute for Exceptional Care, the Special Olympics International, and the Association of University Centers on Disabilities (AUCD) should convene and leverage related frameworks such as the Health Resources and Services Administration’s Blueprint for Change and the Federal Evidence Agenda on Disability. Together, they can produce consensus on how to fill any gaps in HHS’s research agenda.
Promoting The Social Model Of Disability And Positive Understanding Of IDD One collective impact of lost federal initiatives on IDD is that it has diminished the government’s authoritative promotion of the social model of disability. That is the view that the most significant barriers that disabled people face are caused by environmental barriers resulting from society’s views and exclusion of people with disabilities rather than their inherent traits. This view is particularly important in health care, where most clinicians receive little training about disability and hold outdated assumptions about how well people with disabilities can live when they receive appropriate supports in conducive environments. Disability-led and allied media-savvy organizations such as the Disability Culture Lab and Hollywood, Health in Society could fill this gap and counter harmful messages about people’s innate deficits. They can partner with national disability advocacy groups to produce and disseminate positive perspectives on the lives of people with IDD.
Non-Federal Efforts Need Leadership From People With IDD And Funding We recognize that many of the entities identified above, such as the AUCD and disability advocacy organizations, have themselves lost funding or face an uncertain funding landscape. They understandably need stabilization. Short-term investments are necessary but not sufficient to address any of these gaps in leadership. That will require substantial and long-term investments from philanthropy and other private sources.
We believe that these targeted non-federal efforts can also serve to reset public expectations about new sources of credibility and authority when it comes to health and IDD. Doing so in a unified voice could rally the IDD community as well as potential private funders.
Most importantly, people with IDD need to play central leadership roles across all these efforts to fill the most critical federal gaps. Their authentic engagement—and the trust it instills—is essential to designing accessible programs and policies that help people with IDD achieve better health and life outcomes.
Authors’ Note: The analysis described in this article was funded by a grant from the Robert Wood Johnson Foundation. Authors Pham, Robinson, and Caplan are affiliated with the Consortium of Constituents with Disabilities.
Patient Advocacy Statement of Need
The lack of formal training in the adult care of pediatric-onset neurologic and neurodevelopmental disabilities represents a significant and ongoing gap in equitable healthcare access. Through the Child Neurology Foundation’s engagement with patients, caregivers, and advocacy organizations across the neurologic community, families consistently report difficulty identifying adult providers who feel prepared to care for individuals with complex childhood-onset neurologic conditions. Many describe prolonged delays in establishing adult care, fragmented transitions, and experiences in which new or worsening symptoms are dismissed or attributed solely to an existing disability rather than appropriately evaluated. One parent stated, “Transitioning from pediatric to adult care felt like falling off a cliff — one day we had a coordinated team who understood our child, and the next day we were expected to navigate a fragmented adult system alone.”
Patients and caregivers frequently describe searching for a “Unicorn Provider,” a term coined within the community to reflect the rarity of clinicians with the knowledge, confidence, and willingness to care for adults with pediatric-onset neurologic and neurodevelopmental disabilities across the lifespan. These lived experiences align with published evidence demonstrating persistent gaps in physician preparedness and confidence in caring for individuals with disabilities (Iezzoni et al., 2021).
As survival and life expectancy continue to improve for individuals with conditions such as cerebral palsy, epilepsy, Down syndrome, autism spectrum disorder, neuromuscular disorders, and other pediatric-onset neurologic conditions, the need for adult neurologists trained in lifespan care has become increasingly urgent. Families consistently report remaining in pediatric systems well into adulthood because appropriately trained adult providers are unavailable. This places strain on pediatric systems while leaving patients vulnerable during critical periods of transition.
The Child Neurology Foundation believes that required training exposure in the adult care of pediatric-onset neurologic and neurodevelopmental disabilities within neurology and child neurology residency programs is necessary to improve physician preparedness, reduce preventable harm related to diagnostic overshadowing, and ensure more equitable access to competent adult neurologic care for this growing population.
2026 Annual Alzheimer's Public Educational Forum
Dr. Ranjan Dwara, spoke in the second morning session. He discussed currently approved disease-modifying therapies for Alzheimer's disease within the amyloid cascade framework, emphasizing that these agents are biologically targeted but clinically stage-dependent. Anti-amyloid monoclonal antibodies—most prominently Lecanemab and Aducanumab—are designed to reduce amyloid plaque burden, thereby intervening at the earliest detectable phase of pathology. However, their clinical efficacy is not uniform and is shaped by a set of interacting patient- and disease-level factors.
A central determinant is timing of intervention. These therapies show their greatest effect in individuals with mild cognitive impairment or very early dementia, where amyloid is present but downstream tau pathology and neurodegeneration are not yet extensive. Once tau spread and neuronal loss are established, removing amyloid may have diminishing clinical impact, as the disease process becomes increasingly driven by non-amyloid mechanisms. This underscores the importance of early identification and diagnostic confirmation, typically through amyloid PET imaging or cerebrospinal fluid biomarkers, to ensure that treatment is directed at patients most likely to benefit.
Another critical factor is disease heterogeneity, including differences in baseline cognitive reserve, comorbid conditions, and genetic risk. For example, carriers of the APOE ε4 allele—while more likely to have amyloid pathology—also appear to have a higher risk of treatment-related adverse events, particularly amyloid-related imaging abnormalities (ARIA). These MRI-detectable changes (e.g., edema or microhemorrhage) can necessitate dose adjustments, treatment interruption, or discontinuation, thereby affecting both safety and sustained efficacy. Thus, risk stratification and monitoring protocols (including serial MRI scans) are integral to treatment implementation.
The burden of vascular and other co-occurring brain pathologies also influences outcomes. Individuals with significant cerebrovascular disease, microbleeds, or other structural abnormalities may be less suitable candidates or may experience attenuated benefit. Similarly, the presence and extent of tau pathology—which is more closely correlated with clinical symptoms—likely moderates response; patients with more advanced tau spread may show less functional improvement despite amyloid reduction. This has led to increasing recognition that amyloid clearance is necessary but not sufficient to halt disease progression in later stages.
From a practical standpoint, treatment adherence and delivery logistics also affect real-world efficacy. These therapies require regular intravenous infusions, ongoing clinical monitoring, and access to imaging and specialist care. Variability in health system capacity, patient tolerance, and caregiver support can influence continuity of treatment and, by extension, clinical outcomes. Moreover, the magnitude of benefit observed in trials has been modest, typically reflected in slowed decline rather than improvement, which has implications for patient and caregiver expectations.
In sum, the emerging clinical picture is that disease-modifying therapies offer meaningful but constrained benefit, contingent on early, accurate diagnosis; careful patient selection; management of safety risks; and sustained treatment engagement. The field is moving toward a more precision-oriented model, in which therapeutic decisions are guided by biomarkers, disease stage, genetic profile, and comorbidities. This also points to the likely future need for combination approaches—targeting amyloid, tau, and other mechanisms—to achieve more substantial disease modification.
The Role of Interest-Driven Experiences in Supporting Wellbeing for Autistic Individuals
For much of the past several decades, autism intervention has been organized around two primary aims: increasing adaptive skills and reducing behaviors that interfere with learning and daily life. These priorities have generated important advances in education and clinical practice. However, the emphasis on remediation has often overshadowed another dimension of human development that is fundamental to long-term quality of life: the opportunity to discover and cultivate personal interests.
Interest Driven Experiences in Supporting Wellbeing for Autistic Individuals
In the broader literature on wellbeing, activities pursued for enjoyment, curiosity, or personal meaning are recognized as powerful contributors to human flourishing. Leisure, hobbies, and recreational pursuits support emotional regulation, strengthen social bonds, and provide opportunities for mastery and identity development across the lifespan. Yet for many autistic individuals, these domains are rarely treated as central components of programming. Instead, they are frequently viewed as optional enrichment or reinforcement.
Emerging perspectives in autism research and practice suggest that this ordering may deserve reconsideration. Rather than functioning as peripheral experiences, interest-driven activities may serve as important mechanisms through which engagement, motivation, and wellbeing develop. When individuals have opportunities to explore activities that genuinely capture their attention, learning often becomes more sustained, relationships more reciprocal, and participation in community life more attainable.
Positive psychology provides a useful framework for understanding this dynamic. The PERMA model of wellbeing (Positive Emotion, Engagement, Relationships, Meaning, and Accomplishment) suggests that flourishing arises not only from the absence of distress but from the presence of experiences that foster joy and connection. When health behaviors such as sleep, movement, and nutrition are also considered, the expanded PERMA+ framework highlights the multidimensional nature of wellbeing. Activities commonly categorized as hobbies or leisure pursuits often simultaneously enhance several of these elements. A shared recreational activity may produce positive emotion, sustain attention, foster relationships, and build a sense of competence within a single experience.
Proof Positive
Within autism intervention, however, opportunities for this kind of integrated experience are not always systematically cultivated.
A brief case example illustrates the potential significance of this shift in perspective.
Dylan Kulkin, an autistic young man who inspired the work of Proof Positive: Autism Wellbeing Alliance, was diagnosed before the age of two and spent many years participating in traditional intervention models. Despite receiving services considered consistent with best practice at the time, Dylan struggled with communication, engagement, and increasing frustration within structured educational settings. By late childhood, he was using the limited language available to him to repeatedly tell his parents that “school was closed,” a phrase they came to understand as an expression of distress and avoidance.
When Dylan’s family chose to reorganize his support around a wellbeing-centered approach, the initial objective was not to accelerate skill acquisition but to understand what experiences naturally captured his interest. The team began by broadening the range of activities available to him and observing where curiosity, enjoyment, or sustained engagement emerged.
Movement activities such as walking, climbing, and running proved particularly motivating. Over time, Dylan developed a strong interest in athletics and physical challenges, eventually participating in endurance events with peers. In another domain, a longstanding fascination with cooking shows evolved into hands-on culinary learning, leading him to develop substantial independence in preparing meals and sharing them with others.
These experiences were not designed primarily as leisure opportunities. Instead, they became contexts in which communication, social interaction, and cognitive learning unfolded organically. As Dylan’s wellbeing increased, his participation in learning expanded and many previously concerning behaviors diminished. Observations collected during this period suggested that shifts in engagement and positive emotion often preceded gains in skill acquisition rather than following them.
While a single case does not establish causality, it highlights a pattern that clinicians and families frequently observe: when individuals encounter activities that align with intrinsic interests, participation becomes more voluntary and sustained. These conditions may be particularly important for autistic learners, whose motivation can be highly sensitive to context and personal relevance.
Recognizing this, our team began developing structured tools designed to help educators, clinicians, and families more intentionally explore areas of interest within everyday environments. One such tool, the Interest and Exploration Guide, organizes a wide range of domains—such as music, art, sports, nature, science, cooking, and community engagement—to support systematic discovery of activities that may resonate with an individual learner. Rather than treating these domains as recreational add-ons, the guide frames them as potential entry points for learning, relationship development, and wellbeing.
The emphasis is not on identifying a single “preferred activity,” but on cultivating a landscape of possibilities. Exposure to varied experiences allows individuals to discover not only what they enjoy, but how those interests can evolve into deeper forms of engagement. Over time, such interests can support identity formation, expand social networks, and provide meaningful ways to participate in community life.
This perspective aligns with a broader shift occurring within the field of autism toward strengths-based and wellbeing-oriented frameworks. Increasingly, researchers and practitioners are asking not only how to address challenges, but how to support flourishing. In this context, interest-driven activities offer a promising bridge between intervention and everyday life. They create environments in which skill development, emotional wellbeing, and social participation can occur simultaneously.
For autistic individuals, access to such experiences may be especially consequential. When opportunities for exploration are limited, the pathways through which engagement and belonging emerge may also narrow. Conversely, when individuals are encouraged to pursue activities that spark curiosity or joy, new forms of learning and connection often follow.
The question facing clinicians and educators may therefore be less about whether hobbies or leisure activities belong within intervention, and more about how intentionally they are incorporated.
If wellbeing is a central outcome of autism support—as many families and self-advocates increasingly argue—then the conditions that nurture wellbeing deserve careful attention. Experiences of shared interest, exploration, and enjoyment may be among the most powerful of those conditions.
Dylan’s story ultimately offers a reminder that the trajectory of development is not determined solely by the intensity of instruction. Sometimes it begins with a much simpler question: what does this person love to do?
When that question is taken seriously, new possibilities often emerge.
Empathy in the Age of AI
The last time we had articles that specifically addressed empathy was back in 2023. I wrote one of those articles, and one of our students responded to it. This was long before we were thinking much about AI in medicine. Today, I am proud to feature an article by Dr. John Lantos, updating our discussions.
Adam Cifu
For years, thoughtful physicians assumed that artificial intelligence would handle the drudgery of medicine—the documentation, the billing, the data entry—and that this would free doctors to be more humanistic. The machines, by this view, could never be empathic. Eric Topol’s 2019 book on AI in healthcare captured this optimism in its subtitle: How Artificial Intelligence Can Make Healthcare Human Again.
This was before the widespread use of large language models (LLMs).
2023 saw the release of ChatGPT4 and a study in JAMA Internal Medicine that changed our understanding of machine-produced empathy. In the study, patients were shown responses to their medical questions—some written by physicians, some by an AI chatbot—and asked to rate them for empathy. The chatbot won. Such findings were replicated in oncology and patient portal research. Topol revised his thinking: maybe AI wasn’t just a tool that could free up physicians to be empathic. Maybe it was modeling empathic communication in ways that could teach us something.
The implications are unsettling. If a machine with no inner life, no history with the patient, and no stake in the outcome can be perceived as more empathic than a trained physician, what exactly is empathy? Can we measure it? Can we teach it?
Empathy Is Not One Thing
Philosopher and psychiatrist Jodi Halpern argues that empathy is not simply a communication skill or emotional resonance but a form of emotional reasoning — a disciplined use of imagination, informed by medical knowledge, careful listening, and genuine attunement to what illness means in a patient’s life. That’s a much richer concept than what studies of AI empathy typically assess.
Leslie Jamison, who worked as a “medical actor” for student examinations long before chatbots, noticed that there was a gap between the sort of performative empathy that she was tasked to evaluate, and the deeper sort of empathy that she sought as a patient. The grading criteria that she was instructed to apply, she wrote, rewarded shallow expressions of understanding. To Jamison, those felt worse than nothing. “Empathy isn’t just remembering to say that must really be hard — it’s figuring out how to bring difficulty into the light so it can be seen. Empathy requires inquiry as much as imagination.”
Most contemporary researchers break empathy into four components. Affective empathy is the capacity to feel something of what another person feels — emotional resonance. Cognitive empathy is the intellectual understanding of another’s perspective, attainable without necessarily sharing their feelings. Communicative empathy is the ability to express that understanding in legible ways — through words, tone, and gesture — so the other person knows they’ve been seen. And moral empathy is a responsiveness to another person’s conception of their own suffering, one that genuinely reshapes how you respond to them.
These are not four faces of the same thing. They are partially independent capacities, each of which can exist without the others. A doctor can have strong cognitive empathy and poor communicative skill, or robust affective resonance with almost no ability to express it. Crucially, a system can have fluent communicative empathy with zero moral engagement. That last combination is exactly what a well-trained large language model produces.
What AI Reveals
The findings that AI is perceived as empathic tell us more about the erroneous ways we have been measuring empathy than they do about the superiority of machines. Standard empathy assessments, of the sort that Jamison criticizes, mostly capture the communicative layer: a warm tone, acknowledging gestures, and verbal validation of emotions. An LLM trained on millions of human conversations can score well on these metrics because it has learned the form. But form without foundation is not enough.
Communicative empathy without underlying moral engagement is hollow performance. It can satisfy patients in brief textual exchanges. But assessing only that, and claiming that machines outperform humans, endorses shallow reductionism. A more robust assessment would not just examine patient perceptions of a brief, typed query. Such an assessment would ask whether the chatbots can sustain the ongoing interpretive work of longitudinal care, or help patients navigate the challenges of clinical uncertainty, or just be present when patients must face bad news.
There is a categorical difference that the metrics obscure. An AI system processes inputs and generates outputs; nothing is at stake for it. It cannot be moved. A physician who could be moved but chooses detachment is failing. These are different situations for the patient, even when the outputs look identical in a single encounter. As Harari put it, “The deepest level of human relationships is not the desire for someone to care about my feelings; it’s the opposite ... It’s the desire to care about their feelings as well.”
The Training Problem
This distinction matters for medical education. We know that empathy erodes during medical school, with the sharpest drop in the third year, precisely when students transition from classroom to clinic. The pattern continues through residency.
The causes are structural. The hidden curriculum teaches emotional detachment as professionalism. Role models demonstrate efficiency over presence. Evaluation systems reward diagnostic accuracy and procedural competence while treating relational quality as unmeasurable or secondary. Students enter medicine with above-average empathy and idealism; training systematically degrades both.
Osler famously counseled students to seek equanimity — a kind of emotional distance — rather than empathic engagement. Osler’s approach has become the standard. Doctors are trained to avoid deep emotional connections with patient’s suffering, even as they get bad grades of they don’t learn to express shallow endorsements of that suffering. Empathy is thus celebrated in theory even as it is extinguished in practice. Students receive a mixed message and resolve it the way overworked people always do, by responding as required to get their rewards, and protecting themselves with cynicism.
Prior attempts to counter this through curricular add-ons — a humanities elective here, a communication module there — have mostly failed, not because the content was wrong but because it left untouched the environment that erodes what the curriculum cultivates. You cannot teach empathy on Tuesday and train it out of students the rest of the week.
How to Teach
The emergence of empathic AI forces a clarifying question on medical education: What does human empathy do that a machine cannot? If our answer is, “By our current metrics, nothing,” that is a problem with our metrics that will ensure our rapid obsolescence in a world of skilled chatbots. It is not a discovery about human nature.
The deeper forms of empathy that sustain clinical practice — interpretive understanding, moral attention, the willingness to be genuinely changed by a patient’s reality — are precisely the skills that cannot be automated. The challenge is not to compete with machines in scripted empathy. It is to teach the forms that no machine can simulate. Those are not so easy to teach.
One model for such teaching comes from hospital chaplaincy. Chaplains understand that listening is not an optional adjunct to care. It is a core competency, a sophisticated skill that must be cultivated, practiced, and refined. Chaplains in training learn through a methodology called Action/Reflection/Action. The chaplaincy student visits a patient, then reconstructs the encounter in exhaustive detail in a verbatim report. Then, together with supervisors and other students, the chaplains reflect on what was heard, what was missed, and what in the student’s own history shaped their listening. The goal is for the practitioner to attend fully to a patient’s emotional reality, to monitor, in real time, how those emotions affect the practitioner, and to critically evaluate one’s responses.
Such training takes time. The curriculum is already full. To prioritize this would require de-prioritizing other competencies. But many of those other competencies are for things that the machines do better.
AI’s challenge to the medical profession requires us to think deeply about what it means to care for patients. The machines sound like they care. The question is whether we can help humans care for real.
John D. Lantos, MD is a pediatrician and bioethicist in New Haven, Connecticut. He is working on a book about doctor-patient communication, tentatively titled, “Just Listening.”
Survey of Autism-Affirming Strategies for Adult Mental Health Providers
A research team at the Sandra Rosenbaum School of Social Work in Madison, WI is excited to announce a groundbreaking study on training for licensed clinicians in providing mental health care to autistic adults. Led by Dr. Lauren Bishop, UW-Madison Associate Professor and Investigator at the Waisman Center, we aim to shape future autism-specific professional development.
Your expertise is vital.
Participation Details:
*Surveys: Complete one or two online surveys (approx. 15 minutes each) *Optional Interview: Express interest in a future qualitative interview to generate deeper insights *Eligibility: *Hold a professional degree *Practicing, licensed clinician in a mental health setting *Based in the U.S. *Incentive: Each completed survey enters you into a drawing for a $50 gift card (one winner per every 50 participants) Ready to make a difference?
Your insights will help us develop impactful professional development training tailored for work with autistic adults. Thank you for your time and contribution to this critical work.
If you have any questions, please email the team at bishoplab@waisman.wisc.edu.
Our Campaign for Disability Healthcare Justice
Healthcare Stories
Our Campaign for Disability Healthcare Justice
We are pleased to announce the launch of HEALTHCARE STORIES – free, short videos that illustrate as no policy paper can, the obstacles and barriers that still stand in the way of getting appropriate health care for many people with disabilities.
Video advocacy uses new image technologies to produce documentary campaigns for social and political change through visual evidence, personal stories, and precise audience targeting. Video advocacy has had a strong impact on organized advocacy and grassroots action in many areas and has become an effective new tool in the non-profit social justice community. As communications media change, digital technology, including widespread use of video storytelling, has exploded because it supports a culture of participation and sharing. HEALTHCARE STORIES takes advantage of this vital tool.
We are deeply grateful to The Special Hope Foundation and The Manuel D. and Rhoda Mayerson Foundation for their visionary support of the project, which began collecting stories in 2011.
Medical Care for Adults With Down Syndrome
MAIN POINT
Adults with Down syndrome were found to have an increased prevalence of Alzheimer’s disease, cataracts, diabetes, hypothyroidism, leukemia, obesity, obstructive sleep apnea, and several bone, joint, and mobility conditions, while demonstrating a decreased prevalence of some solid tumor cancers (breast, cervical, colorectal, lung) and some cardiovascular conditions including coronary atherosclerosis, heart disease, and hypertension.
We identified 36 studies on treatment interventions, of which 16 were for dementia (including Alzheimer’s disease). The remaining studies addressed other conditions, including five on obesity, and three each on behavioral, cardiovascular, bone/joint/mobility, sleep, and vision conditions in adults with Down syndrome.
We did not identify any studies that evaluated treatment interventions for blood cancers, celiac disease, diabetes, solid tumor cancers, or thyroid disease in this population.
We did not identify studies that directly compared clinical symptoms and the presentation of common co-occurring behavioral/mental health conditions (e.g., anxiety and depression) in adults with Down syndrome with the general adult population.
We did not identify any studies that assessed the benefits or harms of screening and diagnostic interventions for co-occurring medical and behavioral health conditions in adults with Down syndrome.
Across included clinical areas, the evidence for interventions in adults with Down syndrome remains uncertain. Some improvements were reported for dementia (including Alzheimer’s), depression, sleep apnea, and mobility.
Evidence was insufficient to draw conclusions about whether the treatments were effective in any of the clinical areas we reviewed.
STRUCTURED ABSTRACT
Objectives
To evaluate the benefits and harms of screening/diagnostic and treatment interventions for co-occurring medical conditions in adults with Down syndrome, and to describe estimates of the prevalence of co-occurring conditions and clinical symptoms of common co-occurring behavioral and mental health conditions (e.g., anxiety and depression) in adults with Down syndrome compared with those in the general population. These findings will support the Global Down Syndrome Foundation (GLOBAL) in updating its 2020 clinical guidelines, covering nine previously reviewed and five additional clinical areas prevalent in this population.
Data sources
Medline, Embase, and PsycInfo (Ovid), and CINAHL (EBSCOHost) from January 1, 2000, through July 10, 2025; reference lists of systematic reviews and included studies; a Federal Register notice; and gray literature for additional support for contextual questions.
Review methods
We used methods consistent with the Agency for Healthcare Research and Quality’s Evidence-based Practice Center Program Methods Guide. We prepared the review protocol with input from Key Informants and Technical Experts [PROSPERO CRD42024623477]. Using predefined criteria and dual review, we selected randomized controlled trials and comparative nonrandomized studies that enrolled adult participants with Down syndrome to evaluate benefits and harms of screening, diagnostic, or treatment interventions across 14 clinical areas. International English-language publications were eligible. We assessed risk of bias and strength of evidence for a prespecified list of patient outcomes. Results: Adults with Down syndrome showed a significantly higher prevalence of several medical conditions, including Alzheimer’s disease, cataracts, keratoconus, vision and hearing conditions, diabetes, hypothyroidism, leukemia, obesity, obstructive sleep apnea, and several other bone, joint, and mobility conditions, but lower prevalence for some solid tumors (e.g., breast, colorectal, and lung cancers) and some cardiovascular diseases (e.g., coronary atherosclerosis and hypertension). From 8,680 unique references, we identified 36 eligible studies addressing treatment interventions. No studies addressing screening interventions were identified. Dementia (including Alzheimer’s disease) had the most studies, with 16 focused on pharmacologic, exercise-based, and supplement interventions aimed at improving cognitive function or delaying onset. We identified only a limited number of treatment interventions for obesity, behavioral conditions (depression), cardiovascular disease, bone, joint, and mobility conditions, sleep apnea, and vision, and none for blood cancers, celiac disease, diabetes, solid tumor cancers, or thyroid conditions. Some improvements were observed for dementia, depression, sleep apnea, and mobility. However, evidence remains uncertain to determine comparative benefits and harms of screening, diagnosis, and treatment for co-occurring conditions.
Conclusions
While evidence remains uncertain, this does not mean the individual interventions described are not potentially useful for this population. Future research assessing benefits/harms for this population could benefit from larger cohorts of diverse participants using standardized protocols to enhance data relevance, ensure consistency, and enable reliable comparisons.
FUNDING
This evidence review was funded by the Patient-Centered Outcomes Research Institute under Contract No. 75Q80120D00008 from the Agency for Healthcare Research and Quality, U.S. Department of Health and Human Services, through a Memorandum of Understanding Amendment, number 20-603M-23.
CITATION
Abdi HI, Larson S, Scal P, Behrens KL, Ratner E, Bahr T, Farrell M, Claussen AM, Parikh R, Duan-Porter W, Butler M. Medical Care for Adults With Down Syndrome. Systematic Review. (Prepared by the Minnesota Evidence-based Practice Center under Contract No. 75Q80120D00008.) AHRQ Publication No. 24(26)-EHC010. Rockville, MD: Agency for Healthcare Research and Quality; March 2026. DOI: https://doi.org/10.23970/AHRQEPCSR_MEDICALDOWN. Posted final reports are located on the Effective Health Care Program search page.
Mindfulness-Based Interventions for Well-Being and Mental Health in Children and Adolescents (A Systematic Review)
Notice: The project, project findings and project content presented here are the responsibility of the awardee and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute.
The Patient-Centered Outcomes Research Institute (PCORI) partnered with the Agency for Healthcare Research and Quality (AHRQ) to develop a systematic evidence review on Mindfulness-Based Interventions for Well-Being and Mental Health in Children and Adolescents. The Academic Consortium for Integrative Medicine and Health and the American Academy of Pediatrics (AAP) intend to use the systematic evidence review to inform clinical practice guidance on this topic.
Background
Pediatric mental health represents a pressing issue for patients, families and healthcare providers. Emerging evidence indicates that the prevalence of mental health conditions in youth has risen during the COVID-19 pandemic, with one recent estimate finding that up to one in five children and adolescents experience clinically significant depression, while as many as one in four may experience anxiety. Certain populations may also be at increased risk for elevated symptoms of depression, anxiety or stress, including children and adolescents with chronic conditions. Anxiety and depression in childhood can negatively impact social life, education, wellbeing, sleep and other aspects of daily life and can persist into adulthood, hence the pressing need to understand how to best manage these conditions.
Access to evidence-based treatments is important for managing mental health conditions in children and adolescents, but few receive such treatments, and even fewer access care through mental health professionals. Recommendations for the treatment of anxiety and depression in youth are limited to conventional therapies: medication and two forms of psychotherapy (cognitive-behavioral therapy and interpersonal psychotherapy). Integrative therapies, which are complementary or alternative therapies used alongside conventional treatment, are in common use among children in the United States, with nearly 12 percent of parents reporting the use of these therapies. Among the most common integrative therapies in use are mind-body practices, which include mindfulness-based interventions. Mindfulness-based interventions seek to improve well-being and health through self-regulation and attention to the present moment, often through practices such as meditation or relaxation techniques. Mindfulness-based interventions represent a potential mental health management strategy of high interest to youth and their families, and there is a growing body of evidence suggesting the efficacy and safety of their use.
Existing clinical practice guidelines from United States-based medical societies for the management of depression and anxiety in children and adolescents offer only recommendations for conventional treatments. Though a 2016 clinical report from the AAP on mind-body practices offers some insights on the use of mindfulness-based interventions – namely mindfulness-based stress reduction, meditation and guided imagery — the report is outdated and was not based on a systematic review. No clinical practice guidance offers specific recommendations for the use of mindfulness-based interventions for pediatric mental health.
Many recent systematic reviews assessing mindfulness-based interventions are dated, with the last literature searches having occurred two or more years ago, and are frequently narrow in scope (e.g., focused on anxiety or school-based interventions only). The most recent and comprehensive review combined analysis of all mindfulness-based interventions together and did not assess the effectiveness of specific therapies, did not include many of the most recent trials and did not grade the strength of evidence.
With a variety of mindfulness-based interventions available, patients, families and healthcare providers seek clarity on the range of safe and effective options. The lack of a guideline or recent and comprehensive systematic review, paired with accumulating evidence, indicates the need for a new review of the effectiveness of mindfulness-based interventions. The proposed review will aim to inform clinical practice guidance on mindfulness-based interventions for mental health in children and adolescents and inform decision making for physicians, patients and caregivers.
Key Questions (KQs)
KQ1. What are the benefits and harms of mindfulness-based interventions in the general child and adolescent populations?
KQ2. What are the benefits and harms of mindfulness-based interventions in children and adolescents diagnosed with anxiety and/or depression?
KQ3. What are the benefits and harms of mindfulness-based interventions in children and adolescents with a chronic condition who are at risk for elevated symptoms of anxiety and/or depression?
The Essentials Of Person-Centered Assessment
The following article is part of an ongoing series about the NADSP Competency Areas. The NADSP Competency Areas offer DSPs the opportunity to address challenges, work on issues identified by the person they support, or assist a person in pursuing a particular goal. Each Competency Area has corresponding skill statements that describe the knowledge and skills DSPs must have to demonstrate competency in each area.
This blog is about the skill statement “The competent DSP conducts or arranges for assessments to determine the needs, preferences, and capabilities of the participants using appropriate assessment tools and strategies, reviewing the process for inconsistencies, and making corrections as necessary,” within the NADSP Competency Area: “Assessment.” Inside The Competency Area
Assessment
Embracing thorough and person-centered assessment practices is essential for direct support professionals (DSPs) because every person receiving services has unique strengths, preferences, communication styles, and support needs. By conducting or contributing to assessments, DSPs help create the person centered supports that fit the individual person and not just a ‘one size fits all’ approach. This is the essence of being a person centered practitioner. Assessments can be formal and written documents as well as informal and intuitive. Either way, DSPs must have a solid relationship with the person supported in order to assess situations.
The competent DSP conducts or arranges for assessments to determine the needs, preferences, and capabilities of the participants using appropriate assessment tools and strategies, reviewing the process for inconsistencies, and making corrections as necessary.
Inside The Skill Statement
The competent DSP conducts or arranges for assessments to determine the needs, preferences, and capabilities of the participants using appropriate assessment tools and strategies, reviewing the process for inconsistencies, and making corrections as necessary. DSPs spend more time with people supported than nearly any other professional. They observe daily routines, challenges, and successes. This makes their input vital for accurate, meaningful assessments and ongoing adjustments. When DSPs understand a person’s capabilities and goals, they can provide supports that build independence, promote choice, and enhance participation in community life. DSPs who embrace assessment practices are better able to notice when supports aren’t working. When assessment practices are used, the DSP can better communicate changes or concerns in plans and goals. Good assessment skills can help prevent small issues from growing into larger problems! Assessments rooted in listening, observing, and understanding reinforce the central mission of DSP work which includes supporting people to live the lives they choose.
The Impact On People Receiving Services
Good assessment by DSPs directly improves the lives of people with disabilities in several meaningful ways:
It ensures supports match the person’s real needs. DSPs observe daily routines, challenges, preferences, and strengths. When these observations are used in assessment, the person receives supports that are accurate, individualized, and truly useful rather than generic or assumed.
A DSP that has competence in Assessment skills promotes independence and skill-building. Effective assessments identify what the person can already do as well as where they may need some supports.
Assessment improves health and safety, as we know that DSPs are often the first to notice changes in behavior, early signs of medical issues, risks in the environment, and emotional or mental health concerns.
Good assessment makes services more responsive and more human.
Putting It All Into Practice
DSPs naturally observe people throughout the day. Turning those observations into assessment means paying attention to changes in behavior, mood, routines, and skills. It may mean noticing patterns – times when things go well and when challenges occur. Watching for environmental triggers or supports that make a difference is something a competent DSP will do. It is vital to document observations promptly and accurately. Even small daily notes can reveal big trends over time! DSPs need to listen to the person they support and honor their individual communication style. Whether someone communicates through words, gestures, devices, or behavior, be sure to ask questions that help you understand that person’s preferences and goals. You should monitor how the person responds to different tasks, choices, and situations and always seek out the person’s perspective. Never rely on what others may assume about the person you support. DSPs need to remember that every interaction can provide data that helps shape your support.
Staff should always use formal assessment tools consistently, which may include:
Adaptive behavior assessments
Preference inventories
Risk or safety assessments
Daily living skill checklists
Communication profiles
Applying tools consistently ensures the team has reliable, comparable information. If you have questions about an assessment tool, seek guidance from a supervisor or team member who may be familiar. Share information with your team! DSPs play a key role in team based assessment by reporting observations during team meetings and frequently communicating updates about progress or concerns. DSPS can offer great insights that others may not see. Always maintain a person centered approach. This can be grounded by focusing on strengths rather than deficits. Do your best to ask what matters most to the person, ensuring the person’s voice guides decisions! See people as partners – not objects of evaluation. All of this reinforces the mission of DSP work and leads to supporting people to live the lives they choose.
Quick Tips
How can you help embrace this skill statement and implement it? Here are some quick tips!
Observe daily patterns and note even small changes
Ask the person what they want, need, and prefer
Document accurately, promptly, and without assumptions
Use behavior as communication and look for meaning
Share observations with the team regularly
Track what supports work, and what doesn’t
Reflect on your own actions and their impact
Look for strengths before identifying needs
Review support plans and align your observations
IEC Dental Toolkit Now Available
Institute for Exceptional Care
Institute for Exceptional Care (IEC) is excited to share that the IEC Dental Toolkit is now published and available for free download.
Developed in partnership with Delta Dental New Jersey and Delta Dental Foundation, this toolkit was created to help make dental visits more successful for people with intellectual and/or developmental disabilities (IDD), their support teams, and dental providers.
The toolkit includes resources for dental professionals, such as guides for accessible communication and supporting patients with complex needs, as well as tools to help people with IDD prepare for their visit, understand dental procedures, and communicate effectively in the dental office.
All tools are free to download and use. Simply fill out the short form on the page and you'll receive the download link by email.
Please share this resource widely with your colleagues, networks, and anyone who could benefit. The more people who have access to these tools, the greater the impact we can make together.