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.”
Effort Seeks To Improve Dental Care For Those With IDD
Disability Scoop
With $51 million, a new initiative is underway to increase access to dental care for children with developmental disabilities in communities across the country.
The U.S. Department of Health and Human Services said this week that its Health Resources and Services Administration is awarding funds to 28 health centers to help meet the specific dental needs of those with autism, Down syndrome, cerebral palsy and intellectual disabilities.
Families of children with developmental disabilities have long reported struggles accessing dental care, with many providers ill-equipped to support sensory sensitivities, physical and communication differences and other specialized needs.
Federal officials say that participating health centers will use evidenced-based models and test new approaches. Funding will go toward expanding preventive care services, boosting the workforce and developing innovative models.
“A parent shouldn’t have to struggle to find a dental provider who is prepared to care for their child,” said Tom Engels, administrator of the Health Resources and Services Administration. “This investment will help health centers build the skills, services and approaches needed to make dental care more accessible and responsive to children and families — and help us learn what works so successful models can reach more communities.”
In addition to challenges finding dental care, HHS noted that children with developmental disabilities are at increased risk of oral health problems like tooth decay and gum disease.
Health centers funded by the Health Resources and Services Administration are well-equipped to address the unique needs of those with disabilities since they also provide primary care and know how to connect families with resources like transportation and education, HHS said. Services at the centers are provided no matter a family’s ability to pay.
Participating health centers will receive up to $2 million each. In addition to funding, they will partake in “collaborative learning and evaluation activities,” federal officials said, that will help identify approaches that can be replicated by other providers.
Call for Papers
Improving Health Outcomes for People with Intellectual Disability: Inclusive Research, Responsible Inclusion in Research, and Equitable Clinical Trials for People with Intellectual Disability
AAIDD
Overview
People with intellectual disability experience disparities in social determinants of health, quality of healthcare, and health outcomes. Although advances fueled by scientific discoveries can reduce these disparities, people with intellectual disability have historically been excluded, underrepresented, or inadequately supported in clinical research, including clinical trials. This exclusion has significant implications for evidence-based care, health equity, and the ethical integrity of research practices.
There are multiple avenues to fostering responsible inclusion of persons with intellectual disability in clinical research and clinical trials. Increasingly, there is recognition of the importance of inclusive research approaches that actively involve individuals with intellectual disability as meaningful partners in the development and conduct of research. Inclusive research can lead to more ethical, socially relevant, respectful, valid, translatable research, and, over time, improved health outcomes for people with intellectual disability.
This Special Issue of JIDR aims to advance scholarship at the intersection of inclusive research, responsible inclusion, and equitable clinical trial design, with a focus on improving participation, representation, and health outcomes for people with intellectual disability, whether achieved via inclusive research practices or other forms of patient and public engagement.
We invite submissions that critically examine barriers, propose innovative methodologies, and highlight best practices that promote responsible inclusion in health research and equitable clinical research and clinical trials. While we encourage submissions that utilize inclusive research, this is not mandatory provided the manuscript addresses the topics described in this call.
We encourage authors to write manuscripts in formats and language understandable across international contexts and understandable to people with intellectual disability.
Key Questions
Submissions may address questions relevant to improving health outcomes among people with intellectual disability such as:
How can research systems be redesigned to ensure equitable inclusion of people with intellectual disability in clinical research and clinical trials?
What approaches to consent foster responsible inclusion in clinical research and clinical trials?
What ethical adaptations are required for truly inclusive research and clinical trials?
What are the measurable impacts of inclusive methodologies on clinical research and clinical trials research quality and outcomes?
How can clinical trials become more accessible without compromising scientific rigor?
Scope and Topics of Interest
We welcome original research articles (quantitative, qualitative, or mixed methods), reviews, and brief reports addressing the following topics related to improving health outcomes among people with intellectual disability:
Inclusive Research Practices
Application of inclusive research to foster responsible inclusion
Models of co-production and inclusive research involving people with intellectual disability
Innovative, theoretically-informed, best practices to support meaningful engagement of research partners with intellectual disability
Study of inclusive research outcomes and impacts
Responsible Inclusion of People with Intellectual Disability in Clinical Research and Clinical Trials
Ethical frameworks for inclusive and respectful research
Accessibility of research materials, consent processes, and dissemination
Supported decision-making and informed consent
Balancing protection and autonomy in research participation
Cross-cultural and global perspectives on inclusion and ethics
Addressing power dynamics, stigma, and epistemic injustice in research contexts
Inclusion in Health Research and Clinical Trials and Health Research
Barriers and facilitators to participation in clinical trials
Inclusive trial design (e.g., adaptive protocols, accessible communication, flexible procedures)
Regulatory and institutional considerations for including people with intellectual disability
Representation of people with intellectual disability in biomedical and mental health research
Interventions and Implementation that Equitably Include People with Intellectual Disability in Clinical Research and Clinical Trials
Development and evaluation of interventions tailored for people with intellectual disability
Implementation science approaches for inclusive clinical research
Digital health and technology-enabled inclusion of people with intellectual disability in clinical research and clinical trials
Lived Experience and Co-authorship
Manuscripts co-authored by individuals with intellectual disability that present their perspectives as community research partners.
Manuscripts may describe experiences of conducting research and/or developing approaches for responsible inclusion in research.
Submission Details
Manuscript types accepted: Original research articles (quantitative, qualitative, or mixed methods), reviews, brief reports, and innovations to practice.
Information for authors: Author Guidelines
Full Papers will be due for submission by January 15, 2027 and will undergo the journal’s standard peer review process.
Any enquiries to Yona.Lunsky@camh.ca
Manuscripts should be submitted online here.
Please indicate that your submission is intended for this Special Issue:
“Inclusive Research, Responsible Inclusion, and Clinical Trials in Intellectual Disability.”
University of Pennsylvania School of Dental Medicine Launches National Online Resource to Support Caregivers
Penn Dental
On October 27, 2026, the University of Pennsylvania School of Dental Medicine launched the Caregiver Dental Hub (CaregiverDentalHub.org), a first-of-its-kind, no-cost national resource website. Supported by the Delta Dental Community Care Foundation and led by dental educators Dr. Stephen N. Abel and Dr. Joan Gluch, the initiative addresses a major healthcare gap for the 63 million Americans who provide daily medical and oral care for individuals with disabilities without formal training.
Shaped directly by feedback from hundreds of caregivers, the site translates evidence-based clinical information into practical, real-world strategies. The platform features instructional videos, expert demonstrations, and caregiver stories covering essential daily tasks, including:
Choosing proper oral health products and making healthy nutritional choices.
Implementing safe physical positioning techniques during mouth care.
Communicating effectively with dental professionals and reducing stress during routines.
Accessing a directory of disability-friendly dentists experienced in providing special accommodations.
Penn Dental Medicine Dean Mark S. Wolff and Delta Dental Director Kevin Ryan highlighted the Hub as a transformative, prevention-focused advancement in health equity. By directly equipping the caregiver community with the skills and confidence needed for effective oral hygiene, the initiative aims to break down historic systemic barriers to dental care and significantly improve the quality of life for individuals with disabilities.
For more information click here.
The 2026 World Alzheimer Report is now available: A New Era of Dementia Clinical Trials!
Alzheimer's Disease International
Dementia clinical trials are bringing new opportunities alongside important questions about how we make research more inclusive, accessible and effective to enable emerging and future innovation for dementia treatments.
The 2026 World Alzheimer Report explores key issues including recruitment participation and retention, the importance of global representation, diversification and their impact on inclusive dementia research, and the need to increase awareness and understanding of clinical trials among medical practitioners. The report also explores what clinical trials are and how they work, while sharing personal perspectives and experiences from people involved in clinical research.
By bringing together evidence and lived experiences, the report shines a light on recommendations to ensure the next generation of dementia clinical trials are fit to deliver global innovation for future treatments.
Download your free digital copy of the report today!
She Isn’t Misbehaving – She May Be in Pain: Menstruation and Emotional Communication in Autistic Girls
Dr. Zain Haris
Autism spectrum disorder (ASD) is a complex neurodevelopmental condition. Autistic people may experience differences in communication, sensory processing, and their responses to change. These differences can affect how an autistic girl experiences menstruation and how she communicates pain or discomfort.
Autistic Girl Menstrual Pain Emotional Communication
Menstruation brings physical, hormonal, and emotional changes. For some autistic girls, these changes may be especially difficult because they interrupt familiar routines and introduce unfamiliar sensations. A girl may become anxious, withdrawn, irritable, or distressed without being able to explain what is happening. Adults may see the change in her behavior but fail to recognize the pain behind it.
Research on the menstrual experiences of autistic girls and women remains limited. Recent reviews have found that menstruation can affect sensory experiences, emotional well-being, and daily life for autistic people, but they also note important gaps in the evidence (Ellis et al., 2025; Skommer & Gunesh, 2025). Autism research has historically focused on children and males, and females have been underrepresented in research participation (D’Mello et al., 2022; Brickhill et al., 2023). Many studies have also relied on caregivers’ observations. Although caregiver reports are valuable, they may not fully represent what autistic people feel and experience in their own bodies.
Why Menstrual Distress Can Be Difficult to Communicate
Periods may cause abdominal cramps, nausea, fatigue, headaches, bloating, breast tenderness, and changes in mood. Research suggests that menstruation may also intensify anxiety, sensory sensitivity, communication difficulties, meltdowns, or self-injurious behavior in some autistic people (Burke et al., 2010; Steward et al., 2018; Lee, 2004). These experiences vary, and they do not affect every autistic girl in the same way.
Some girls may have difficulty identifying where the pain is coming from or describing how severe it is. This can be especially challenging for girls who use limited speech or communicate in other ways. However, even a girl with strong verbal skills may struggle to describe a new internal sensation. She may know that something feels wrong without having the words to explain it.
Gray and Durand (2023) found that autistic people with dysmenorrhea, or painful periods, sometimes had difficulty describing their pain in ways that healthcare professionals accepted. Some also felt that they were expected to cope with the pain. When pain is not communicated in a familiar way, parents, teachers, and professionals may underestimate it.
When Pain Is Mistaken for Behavior
Menstrual pain may appear as crying, anger, withdrawal, refusal to participate, poor concentration, sleep changes, or an increased need to be alone. A girl may hold her abdomen, avoid certain clothes, sit differently, or use the bathroom more often. For girls with higher support needs, distress may also appear as increased self-injury.
These signs do not prove that menstruation is the cause. Similar changes can result from illness, constipation, anxiety, lack of sleep, medication, bullying, or another source of pain. Still, when the same behavior appears before or during a period, menstrual discomfort should be considered.
If adults treat the situation only as a behavior problem, the underlying pain may remain untreated. The girl may be punished or given more demands when she actually needs support. Over time, this can reduce her trust in the adults around her and make it more difficult for her to ask for help.
Sensory Difficulties During Menstruation
Sensory sensitivity can make menstruation more difficult. Autistic people have described increased sensitivity to pain, touch, smell, noise, and the sensation of blood flowing during their periods (Steward et al., 2018). A busy school bathroom, bright lighting, tight clothing, or a lack of privacy can add to the discomfort.
Menstrual products may also create sensory problems. The smell of a sanitary pad, the feeling of adhesive against the skin, or the dampness caused by bleeding may be difficult to tolerate. A girl may remove a pad or refuse to wear it because it feels uncomfortable, not because she is being uncooperative.
Different products work for different people. Some girls may be comfortable with pads, while others may prefer period underwear or another option. The product should be safe, suitable for the girl’s needs, and as comfortable as possible.
Tracking Patterns and Respecting Privacy
A simple menstrual calendar can help families identify patterns and make periods more predictable. Parents can record the first day of bleeding, pain, sleep, appetite, mood, school participation, sensory difficulties, and the strategies that helped. After several cycles, the record may show whether certain changes regularly occur before or during menstruation.
The girl should be involved as much as possible. Depending on her age and communication style, she may use a calendar, body map, visual pain scale, emotion cards, pictures, or a communication device. Her menstrual information is private and should be shared only with people who need it to support her. Tracking may help during a medical appointment, but it cannot replace a professional assessment.
How Adults Can Provide Support
Preparation should begin before the first period whenever possible. Girls need clear information about bleeding, physical symptoms, menstrual products, and when to ask for help. Teaching words, pictures, or symbols for cramps, nausea, fatigue, bleeding, and pain can make it easier for a girl to explain what she is experiencing.
At home or school, support may include access to a quiet space, water, the bathroom, spare clothing, preferred menstrual products, rest, or flexibility with physical activity and schoolwork. A private card, picture, or agreed phrase can allow a girl to ask for help without discussing her period in front of other people.
Adults should pause before responding to distress with punishment or increased demands. Asking, “Could she be in pain?” may lead to a more helpful response. Parents, educators, and healthcare professionals can then work together to understand what the girl is communicating and what support she needs. Her privacy, preferences, and bodily autonomy should remain central to menstrual care.
When Medical Assessment Is Important
Severe menstrual pain should not be dismissed as normal or treated as part of autism. Medical advice is important when pain repeatedly interferes with school, sleep, or daily activities. Very heavy or prolonged bleeding, fainting, dizziness, vomiting, extreme fatigue, or a clear increase in self-injury also requires professional attention.
Before an appointment, parents can inform the clinic about the girl’s communication and sensory needs. Healthcare professionals may be able to explain each step before touching her, allow additional time, use visual supports, or permit a trusted person to remain with her. These adjustments may make the examination less distressing and help the girl participate in her own care.
Conclusion
A change in behavior may be a way of communicating pain. When an autistic girl becomes distressed around menstruation, adults should look beyond the behavior and consider what her body may be telling them. Careful observation, respectful communication, and appropriate medical support can prevent menstrual pain from being mistaken for misbehavior.
How Urinary Tract Infections Trigger Delirium in People With Dementia
Being Patient
In a conversation between Dr. Shouri Lahiri (Cedars-Sinai) and Deborah Kan (Being Patient), Dr. Lahiri explains the critical link between urinary tract infections (UTIs) and delirium in dementia patients, driven by body-wide inflammatory responses that damage brain cells.
🧠 The UTI-Brain Connection & Delirium
Inflammatory Trigger: A UTI causes the body to release inflammatory proteins like interleukin-6 (IL-6) into the bloodstream. This signaling crosses into the brain, causing delirium—a sudden, fluctuating state of confusion, attention loss, or behavioral shifts.
Vulnerability in Dementia: Younger brains resist these inflammatory changes, but individuals with dementia have less cognitive reserve, making them highly susceptible to severe cognitive unravelling or "hypoactive" withdrawal and terror.
Long-Term Risks: UTIs are a leading cause of emergency visits and mortality in dementia patients. Repeated episodes of delirium double the rate of cognitive decline and proportionally increase future dementia risk.
📋 Diagnosis and Treatment Challenges
Subtle Symptoms: Patients with advanced dementia often cannot communicate classic symptoms like burning or pain. Caregivers should watch for indirect signs: grimacing during urination, reaching for the genitals, sudden changes in continence, or fever.
Clinical Judgment: UTIs in older adults require a clinical diagnosis based on active symptoms, not just a positive urine culture, as bacteria frequently colonize the urinary tract without causing an active infection. Injudicious antibiotic use risks resistance or secondary infections like C. difficile.
Urgency: Early antibiotic initiation is absolutely critical to clearing the infection, stopping the inflammatory response, and reversing the delirium.
🛡️ Prevention and Caregiver Strategies
Environmental Management: Maintain strict sleep-wake cycles (keeping rooms bright and patients awake during the day). Ensure they have access to functional hearing aids and eyeglasses to minimize confusion.
Physical Hygiene: Manage hydration, treat constipation, and practice good bowel and bladder hygiene—especially if the patient experiences fecal or urinary incontinence.
Medical Interventions: Dr. Lahiri notes that topical estrogen (estradiol) applied to the genital area has the strongest data for reducing recurrent UTIs in postmenopausal women. For severe conditions like Parkinson's-related urinary retention, clean catheterization may be necessary.
Future Research: The Lahiri Lab is studying neuroprotective and anti-inflammatory pathways (such as 17-beta estradiol and the osteoporosis drug bazedoxifene) to block IL-6 brain injury, though human clinical trials are still pending.
If you are currently managing care, I can provide more specific resources. Would you like to explore printable tracking logs for behavior changes, deep-dive into the clinical signs of hypoactive versus hyperactive delirium, or look at communication strategies for de-escalating distress?