From the Stacks
There are literally thousands of journals published around the world that relate to the disability community. It is virtually impossible to capture even a fraction of them. HELEN receives "stacks" of journals and selectively earmarks what we feel are "must read" articles of interest for our readers. It's a HELEN perk.
Feds To Reconsider Rule Barring Disability Discrimination In Healthcare
Just as they were set to take effect, federal officials are delaying new requirements meant to make healthcare more accessible to people with disabilities and signaling that additional changes are likely.
The U.S. Department of Health and Human Services published an interim final rule Monday putting off the deadline for healthcare providers to ensure that their websites and mobile applications meet certain accessibility standards.
The new mandate was established under a 2024 regulation updating Section 504 of the Rehabilitation Act. The web standards were one piece of the rule, which also stipulates that people with disabilities should not be denied medical treatments due to biases or stereotypes, sets standards for accessible medical diagnostic equipment and more.
The web accessibility standards apply to most new web content, mobile apps and medical kiosks offered by hospitals, doctors, social services providers and others who receive funding from HHS.
Federal officials initially gave large providers — those with 15 or more employees — until Monday to meet the new web accessibility requirements, while smaller entities had an additional year to come into compliance.
Under the interim final rule, large providers will now have until May 11, 2027 and the deadline for smaller providers has been moved to May 10, 2028.
“The department now believes that the compliance dates for web content and mobile app accessibility in the 2024 final rule in § 84.84(b) are unlikely to be met by a significant number of recipients, especially local governments and other small and medium size recipients of financial assistance from the department, for various reasons beyond the department’s and recipients’ control,” HHS said in the update this week.
Beyond the delay, the agency also said that it plans to reconsider the “substantive requirements” of the 2024 rule more broadly.
“During the extension period, the department will consider issuing (a notice of proposed rulemaking) providing members of the public with an opportunity to comment on the substance of the 2024 final rule and any changes proposed by the department, including any changes that would affect the web content and mobile app accessibility requirements,” HHS said in the interim final rule.
The agency cited comments it has received questioning the need for the new requirements including one indicating that the rule “imposes substantial financial burdens on health care providers without providing any material benefits.” Meanwhile, HHS said that representative of cities, counties and primary healthcare associations have indicated that they are having difficulties coming into compliance.
“While it is possible that some cities, counties, (federally qualified health centers), and other recipients would be able to meet the necessary success criteria prior to the 2024 final rule’s implementation dates, the department is concerned that noncompliance among a significant portion of those recipients would lead to a significant increase in litigation,” HHS said.
Federal officials acknowledged that delaying the deadline could negatively impact people with disabilities, but they said that the change “does not relieve recipients of their other obligations under Section 504” including the need to make reasonable accommodations.
The move comes just weeks after the Department of Justice postponed the deadline for a similar rule under Title II of the Americans with Disabilities Act requiring that online offerings from state and local governments meet certain accessibility standards.
Jennifer Mathis, deputy director of the Bazelon Center for Mental Health Law, called the delay of the web accessibility requirements under both rules “deeply troubling.”
“We have seen that the absence of accessibility standards has left people with disabilities without access to key services and programs,” she said. “The rule already took into account the concerns raised by covered entities and provided ample time for them to comply with the standards. There is nothing new justifying a yearlong delay.”
The HCBS Access Act—Realizing the Promise of Olmstead
Today, we commemorate the 24th anniversary of the Supreme Court’s Olmstead v. L.C. decision recognizing the right of plaintiffs Lois Curtis and Elaine Wilson and people with disabilities of all ages to live, work, and participate in their communities. Unfortunately, this right is not yet realized for millions of older adults and people with disabilities because the Medicaid home and community-based services (HCBS) system does not have the capacity to meet the current and growing need.
Due to persistent underfunding and bias in federal Medicaid law that funnels more money into institutional care than in-home care, significant gaps, inconsistencies, and inequities exist in HCBS across states. This leads to older adults and people with disabilities living in nursing facilities and other institutions when they do not need to be. On this anniversary of the Olmstead decision, we reaffirm our commitment to rectifying this disparity to ensure that all older adults and people with disabilities have the option to live in their preferred environment.
The HCBS Access Act (HAA) is new federal legislation that would help realize the Olmstead decision by creating the HCBS system we need to enable all people with Medicaid, regardless of age, race, disability, or location, to live at home and remain connected to their communities. By expanding access to HCBS, ending the institutional bias, identifying and addressing disparities, and bolstering the HCBS workforce, the HAA aims to create a more inclusive and accessible HCBS system for all.
“Don't shut down, these conversations need to happen”: Indigenous health professionals insights for advancing anti-racism in health care
ABSTRACT
Background
Indigenous peoples around the world continue to experience systemic racism and discrimination within health care, as a direct consequence of colonisation. In settler-colonial states, such as Canada, current approaches to tackling anti-Indigenous racism are often designed by non-Indigenous peoples. Combating racism necessitates that health care policies and practices be co-constructed with Indigenous communities.
Objective
This study explored insights from Indigenous health professionals, educators and community members. It aimed to identify pathways for justice and equity-based medical curricular reform that, while being Indigenous-led, also engage practitioners in institutional accountability.
Methods
Semi-structured interviews were conducted with 12 Indigenous individuals with extensive experiential, professional and academic experience with the health care system and health professions education.
Results
This study highlights the ongoing impacts of anti-Indigenous racism in medical education and health care settings. Indigenous-specific racism within medicine manifests through the dehumanisation of Indigenous peoples, deficit-based approaches to Indigenous health education, and the erasure, omission, or other types of violence and epistemic injustices in educational settings and curricula design. Indigenous approaches to addressing it pivot around sovereignty and self-determination. These include nurturing the Indigenous principle of relationality within institutions, policies, education and interactions; challenging dehumanising narratives by centring Indigenous voices; and re-humanising medical practice through skills that foster connectedness and by embedding justice and equity as core tenets of medical practice.
Conclusion
Indigenous knowledge, principles and insights offer promising approaches for paving the way towards equity- and justice-centred medical practice and education. This study underscores the need to centre Indigenous voices, incorporate Indigenous knowledge and meaningfully engage with communities to embed health equity and justice at the core of medical education and practice.
Identifying Priorities for Pre-licensure Nursing Curriculum to Care for People With Intellectual and Developmental Disabilities: A Delphi Study
ABSTRACT
Background
People with intellectual and developmental disabilities (IDD) experience inequitable health care and outcomes. Pre-licensure nursing programs do not adequately prepare student nurses to care for this population.
Purpose
To identify priorities for pre-licensure nursing curriculum content about nursing care for people with IDD.
Methods
A three-round, mixed-methods Delphi study, inclusively designed, was administered to nurses and people with IDD. Data were analyzed using descriptive statistics and content analysis.
Findings
A total of 16 nurses and 16 people with IDD participated in this study. At the end of the third survey round, consensus had been reached for 77% (10/13) of items under the category of person-centred care, 100% (6/6) of items about communication, 100% (5/5) of items about advocacy, 85.7% (6/7) of items about health and diagnoses, 100% (4/4) of items about collaboration, and 100% (3/3) of items about decision-making.
Conclusion
These findings provide nursing faculty with direction for action in IDD-inclusive nursing curriculum. Future studies are needed to explore teaching and learning methods for further implementation.
“It's okay to feel!”
How a music-based pedagogical activity fosters medical students’ emotional development
ABSTRACT
Background
Emotions are an intrinsic part of medicine. However, formal medical curricula fall short in addressing the role of emotions in medicine, and the hidden curriculum often promotes emotional detachment as a core component of medical professionalism. In this study, we addressed the following research question: what are the mechanisms through which a music-based pedagogy grounded in emotion regulation (EmtR) nurtures medical students' emotional development?
Method
In this cross-sectional, qualitative study, we performed a reflexive thematic analysis with an inductive approach grounded in the constructionist paradigm. The pedagogical activity comprehended four encounters, and music listening sessions were used to evoke emotions. The encounters were conceptualized to address emotion expression, identification, regulation and the impact of emotions in clinical care. We recruited 25 participants (21 students and 4 facilitators) from three Brazilian medical schools who took part in semi-structured interviews in 2020 and 2021.
Results
Our analysis resulted in four co-constructed themes explaining the mechanisms through which the music-based pedagogical activity nurtured students' emotional development: (a) Creating a safe and pleasant environment – music listening facilitated emotional expression in a safe, democratic and supportive environment; (b) Facilitating Emotional Connections – shared emotional experiences during collective music listening strengthened connections among students and facilitators, showing how the same experience may evoke different emotional responses; (c) Providing opportunities to engage with EmtR strategies – students reflected on the impact of emotions on their personal and professional development, experiencing and simulating different EmtR mechanisms; and (d) Naturalizing Emotions in Medicine – students reported that music facilitated reflection on the role of emotions in medicine and helped them integrate their emotional selves into their professional roles, valuing emotions as essential to being a doctor.
Conclusions
This study clarifies the mechanisms through which music-based pedagogical interventions can nurture medical students' emotional development, contributing to a broader understanding of how the arts may counteract the culture of emotional detachment in medicine.
Navigating the School-to-College Transition: A Guide for Families of Autistic Students
If you have an autistic child looking to progress into further education (FE) in the UK, chances are that you have felt abandoned by both their school and the prospective college. Whilst the transition from primary to secondary school may have seemed more informed and managed by the school, the move from secondary to post-16 provisions is left to the student and their trusted adult(s). The National Autistic Society reported in 2023 that their Education Help Line had seen a significant increase in calls from parents crying out for help in supporting their child’s move to college, reporting exclusions due to, they felt, a lack of understanding of their child’s specific needs (NAS Education Report 2023, 2023).
Different People Asking Questions
In this article, I hope to shed some light on the transition process and offer a guide for parents and carers to help make the process as smooth as possible for everyone. I elected to write this piece for three reasons: the first is that I am a formally diagnosed autistic woman; secondly, I have worked in FE for over 20 years, specifically focusing on SEND learners in the mainstream system; and finally, I have a 13-year-old autistic son who is looking to go into a post-16 provision. As a teacher, I am acutely aware of the lack of reliable information and the effect this has on parents. As an autistic person, I recognize most of the learning environments were constructed and curated without a thought for sensory overload, and the effect this has on learning. As a parent, I want some practical strategies I can apply to support my son through the transition.
What Are the Main Difficulties Facing Autistic Learners in Their Transition from High School to Further Education?
When moving from one education setting to another, autistic learners will acutely feel the loss of known elements and the impact of forced changes to their routine, teachers and support staff, social circles, safe spaces and predictability. Without the correct support from the high school, the new college, and the caregivers, this period of adjustment can lead to significant burnout, withdrawal, and a decrease in self-confidence. All these can cause a reluctance to engage, oftentimes leading to dropping out of education (Candace Weaver-Dowds, 2025).
As well as coping with their child’s reaction to the transition, parents report a significant failing in the sharing of Educational Health Care Plans and support plans between the high school and new college. When my own child moved from primary to secondary, their support plan was not passed onto the relevant people during the transition period. This resulted in six-weeks of tears and tantrums as he struggled during unstructured playtimes and moving between classroom whilst I battled (and managed) to get him access to the “Enhanced Resource provision for children with Cognition and Learning Difficulties” built into the high school (Co-op Academy Walkden, 2025). Frustrated parents on Mumsnet echo this experience, speaking of being unable to communicate with schools, struggling to access all the relevant paperwork, and the lengthy process of securing the support set up in their school (mumsnet.com, 2025). All of this can lead to caregivers feeling helpless, confused, and frustrated.
What Can Caregivers Do to Support Their Child in the Transition from Secondary to Further Education?
Obtain copies of all your child’s support documentation – The Education (Pupil Information) (England) Regulations 2005 states that if a child attends a mainstream government-run school, anyone with parental and/or caring responsibilities has the right to access their child’s education records and information via a Subject Access Request (SAR) sent to the school’s Board of Governors. This would include all academic achievements, the EHCP and support plans, teacher correspondence and any disciplinary incidents (Child Law Advice, 2025). Once you have these records, make your own copies and give one to the relevant Additional Learner Support worker you will encounter during the in-person college enrolment day, or email them to the college’s Special Educational Needs Coordinator (SENCo).
Know your own and your child’s education rights – Under the Equality Act 2010, no child can be discriminated against based on their disability, including prospective students. All educational providers are legally obliged to take “positive steps to ensure that disabled pupils have equal rights to education and the provision of services.” (Child Law Advice, 2025). You have the right to request: a 121 tour of the campus when it is quieter; a 121 meeting with the child’s personal tutor (ensuring you get their contact details and that your child’s support needs are explained fully); a specific date, time and location (a quiet space away from the main area, for example) for the face-to-face enrolment during the college’s admission period; as well as course documentation such as student subject outlines and a list of assignment deadlines. Contact the college’s SENCo or Admissions Manager to make these requests.
Be actively involved in creating the Transition Plan – Planning early, ensuring all plans are person-centered (making a child’s thoughts and feelings, as expressed by them, the foundations of the plan) and insisting on the involvement of everyone in a child’s support circle are three key elements The National Autistic Society recommend when working with the school to create the Transition Plan (whether they have an EHCP or not). Significant energy needs to be given to how the child’s anxiety can be kept to a minimum, which might include meeting staff on a 121 basis (TIP: ask to see the quiet zones and sensory areas, as well as quiet eating spaces and nature areas your child could go to when needed), a tour of the facilities and classrooms, and even incorporating Social Stories (if this is a known and accepted practice to the child) (Autistic Society, 2023a).
If a child has an EHCP, a Local Authority must ensure that from year 9 onwards, all reviews must include goals relating to preparing for adulthood. For example, in year 9 a goal might be set that requires a child to work with their support team to explore post-16 provisions alongside their aspirations. In year 10, families will be invited to discuss specific colleges and apprenticeships and will be encouraged to attend open evenings (TIP: attending an open evening later rather than at the start ensures that less people are present). Year 11 should see the plan made definite, including contingency plans in case the child does not get their predicted grades (TIP: most colleges offer lower levels of each course, and sometimes a prospective learner’s portfolio can be the deciding factor to the course leader). Your Local Authority will publish which provisions are available for SEND learners which is called the “Local Offer” (National Autistic Society, 2020).
Ensure you receive a copy of the Transition Plan to pass onto the SENCo if needs be. When interviewed by the Society, parents reported finding it “really helpful” to both them and their child having a solid transitional protocol in place (Autistic Society, 2023a), significantly reducing everyone’s anxiety.
Prioritize the social as well as the academic – When asked by researchers, autistic learners were oftentimes more concerned with the non-academic than the academic aspects of college (Anderson, Stephenson and Carter, 2017). As a teacher, I believe social connections play a strong role in keeping learners in college. One of my first priorities during the first week of the course was developing peer relationships via a class trip, short and light-hearted tasks completed in pairs, as well as informal discussions with each student to learn what special interests they shared with their other classmates. Students would often support their peers in class, pushing them to attend via texts and providing a level of emotional support teachers could not offer. These social relationships do not come naturally to most autistic students; therefore, efforts should be made to involve the learner in college extra-curricular activities and clubs, and most colleges offer peer mentorship schemes. Clubs and societies outside of college are also vital as they develop the social skills necessary to build connections in the classroom, and these can align more with the child’s special interest(s). Whilst much has been written on the pros and cons of online friendships, many autistic students (including my son) find strong social connections in the online world with both schoolmates and those further afield. Establishing and maintaining a healthy dialogue with your child about their online activities will both show your interest and hopefully dispel any concerns.
In this article, I aimed to shed some light on the transition process and offer a usable guide for parents and carers to help make the process as smooth as possible for everyone. Whilst every child’s needs are different, if something in this article positively helped you support an autistic learner’s transition from secondary to FE, then my work here is done.
Accessible Healthcare for People with Disabilities
An Implementation Guide for Healthcare Organizations
People with disabilities experience significant disparities in health and healthcare outcomes. Healthcare organizations, even the most well-intentioned, remain largely inaccessible and inequitable for people with disabilities. We have found few comprehensive, evidence-based resources available to support healthcare organizations, clinicians, and staff in delivering high-quality care for patients with disabilities. This Implementation Guide seeks to fill this gap.
Background
More than 1 in 4—or over 70 million—Americans have a disability.1 The Americans with Disabilities Act (ADA) defines a person with a disability as someone who has a physical or mental impairment that substantially limits one or more major life activities; has a history or record of such an impairment; or is perceived by others as having such an impairment.2 This can include mobility, communication, hearing, cognitive, visual, mental health or other disabilities, some of which may not be visibly apparent.
Federal civil rights laws, namely the ADA and Section 504 of the Rehabilitation Act of 1973, prohibit discrimination on the basis of disability.3-5 These laws generally apply to entities that serve the public or receive federal financial assistance, including hospitals, healthcare providers, and other healthcare organizations. Such organizations are mandated to provide full and equal access to care and services for people with disabilities.6
Despite the large population of Americans with disabilities and federal law mandating equal access to care, a growing body of literature finds that people with disabilities experience significant disparities in health and healthcare outcomes. For example, compared to non-disabled people, people with disabilities are more likely to have a greater number of chronic conditions and have higher rates of asthma, hypertension, emphysema, cardiovascular disease, diabetes, and arthritis.7 People with disabilities are also more likely to rate the quality of their health as fair or poor.8,9
While multiple factors contribute to poor health outcomes, inadequate access to high-quality care—despite high rates of health insurance—is a major barrier for people with disabilities. People with disabilities are more likely to report difficulty finding a clinician,7 and when they do access care, they report low satisfaction with the quality of care and communications they receive.7,10 Persistent disparities in cancer screenings such as colorectal cancer screenings,11 Pap tests,12 and mammographies13 exist, and a significantly larger percentage of people with disabilities have at least one hospitalization and emergency department visit within a year compared to people without disabilities.7
While significant progress has been made over the past 50 years, healthcare organizations—even the most well-intentioned—remain largely inaccessible and inequitable for people with disabilities.14 For example, clinics rarely have accessible equipment available, such as wheelchair accessible weight scales, and clinicians report rarely providing accommodations.15-21
We have found few comprehensive, evidence-based resources available to support healthcare organizations, clinicians, and staff in delivering high-quality care for patients with disabilities. This Implementation Guide seeks to fill this gap.
How to Use the Implementation Guide
This Implementation Guide is based on existing data and learnings from healthcare organizations across the country that are working to improve the quality of care provided to patients with disabilities. This information is intended to provide guidelines which are adaptable to your local context.
The Guide is designed for healthcare organizations of all sizes, from small rural clinics to large health systems, and to be used by any role within an organization, from frontline staff and clinicians to executive leadership.
Each chapter provides step-by-step guidance for healthcare organizations to deliver high-quality care to people with disabilities across the following areas:
1. Building a Disability Accessibility Program: Critical infrastructure and foundational components necessary to provide accessible care in your organization.
2. Documenting Disability Status and Accommodation Needs: Collecting patients’ disability status and accommodation needs in the electronic health record.
3. Providing Accommodations: Operationalizing the provision of disability accommodations during a patient’s healthcare visit or stay.
4. Effective Communication: Implementing effective communication in the healthcare setting.
The “General Resources” section contains a variety of materials referenced across the Guide’s chapters. Each chapter includes an introduction to its topic, actionable steps for implementation, and appendices containing tools and resources to utilize while completing each step. Every chapter is intended to be used independently depending on your organization’s needs.
As political pressure mounts, medical school accreditor drops requirement to teach about health equity
The leading medical school accreditation body in the U.S. has removed language from its standards that had required schools it validates to teach about health inequities. The action comes as initiatives to diversify the medical workforce and study disparate health outcomes have come under fire from the Trump administration, and as the accreditation body itself has been subjected to political pressure.
On Wednesday, the Department of Justice contacted three medical schools, asking for data as part of a probe into their admissions practices. “At this time, our investigation will focus on possible race discrimination in medical school admissions,” Harmeet K. Dhillon, the Justice Department’s assistant attorney general for civil rights, wrote in each of the letters, according to The New York Times, which first reported on the investigations.
The accreditation organization, the Liaison Committee on Medical Education, significantly changed its standard that encouraged schools to teach “structural competency,” the ability to recognize how factors beyond the health care system impact patients’ health.
Teaching about structural competency was designed to say to medical students, “Do you know the social, political realities affecting your patient’s health?” said Stella Safo, a physician and founder of Just Equity for Health, a company focused on making health care more equitable. She added it is a way to encourage physicians to think about factors like access to food, housing, and transportation — and to move away from thinking about purely biomedical factors. “It’s not like a natural part of medicine, although it should be,” she said. “So the active removal of it from the curriculum is something that is concerning. I think it speaks to this larger place that we’re in of the anti-woke, anti-DEI movement that’s unfortunately affecting all of us, because teaching structural competency is helpful for your doctors if you’re white, you’re Black, you’re a man, you’re a woman.” The accreditation group’s 2026-2027 standards said schools should teach “The importance of health care disparities and health inequities,” along with “The impact of disparities in health care on all populations and approaches to reduce health care inequities.” The 2027-2028 standards remove that language, replacing it with the direction that schools should teach “skills of self-directed learning, including the ability to self-identify critical gaps in knowledge or understanding and to find, analyze, synthesize, and appraise the credibility of relevant information to fill those gaps.”
LCME did not directly respond to questions about the thinking behind the changes or make a member of its staff available for an interview but said “when the 2027-28 DCI is published and posted in April, not just one, but all of the elements associated with this standard have been re-designed to align more closely with the way in which the expectations for graduating students entering residency, the next stage of training, are bundled and articulated.”
The concept of structural competency was introduced by sociologist and psychiatrist Jonathan Metzl in his 2009 book “The Protest Psychosis,” about the overdiagnosis of schizophrenia in Black people. Initially, Metzl suspected that overdiagnosis was largely attributable to racism, “but what I came to realize writing that book was that there were all of these bigger upstream factors that had to do with the ways we were reimbursing and defining mental illness, and the structures we were building around mental illness that were much more indicative of that overdiagnosis than were the individual attitudes and individual physicians,” he said. “I coined the term structural competency to describe what I thought medicine needed to be doing.” As Metzl continued writing about structural competency, some medical schools began incorporating it into their curriculum, and researchers studied its effectiveness. Some schools would teach dedicated lessons on the topic, while others incorporated it into courses that they were already teaching. At Vanderbilt University, where Metzl is the chair of the department of health, medicine, and society, “we really pushed instructors to broaden the reasons that they were explaining health disparities in their courses,” he said. The goal was to move from focusing on interpersonal racism to “a much more systemic social science and urban planning and economics based explanation, because people felt like those were actually disparities that they could track.”
Removal of the requirement does not mean all schools will stop teaching the topic. But, given how crowded medical curricula already are, a lack of a requirement may lead medical schools — particularly in areas with conservative politicians — to deprioritize it.
It’s unclear why LCME decided to change the language, but the body has come under political pressure from the Trump administration. In May 2025, the president issued an executive order targeting the use of DEI-based standards by LCME and two other accrediting bodies. The order focused on diversity initiatives in admissions, and did not explicitly mention the structural competency standard. The
Accreditation Council for Graduate Medical Education, which regulates residency and fellowship programs, will still include “Systems-Based Practice” as one of its core competencies in its 2026 requirements.
In the year since, there has been no sign that the pressure is letting up. In February, the CEO of Do No Harm, a group that advocates against diversity initiatives in medicine, wrote an opinion piece in The Wall Street Journal calling DEI “a threat to Americans’ health,” specifically calling out the language in the structural competency standard. In the days after LCME published the 2027-2028 standards, Kurt Miceli, chief medical officer at Do No Harm, wrote in a statement that “this marks a major victory and step forward in the ongoing battle over the future of medical education in America.”
But advocates of teaching about structural factors impacting health have pushed back on the change, saying that it makes care for all patients — regardless of their identity — worse. They also argue that considerations of structure are not entirely at odds with positions held by various Trump administration officials.
“There are things that the MAHA people care about that are structural,” said Ariana Thompson-Lastad, a medical sociologist who works with the Structural Competency Working Group, which promotes teaching of structural competency. She pointed to nutrition, the kinds of foods children have access to, incentives pushing people toward eating ultra-processed foods, and clean water as structural issues.
Metzl, who coined the term, agrees. “Structural competency is about structures, it’s not about Republicans or Democrats. I would say that certainly there’s individual choice rhetoric, but there’s nothing in what we’ve been doing that says that individual choice is not important,” he said. “My hope with structural competency was that it was something that could actually help bridge political divides around health. Because it’s community-focused and having to do with health finances and costs for medications: things that were important to our last government, and to this government.”
STAT’s coverage of health inequities is supported by a grant from the Commonwealth Fund. Our financial supporters are not involved in any decisions about our journalism.
Supporting Adults with Developmental Disabilities With Informed Consent
It can be difficult to challenge the stigmas that adults with intellectual and developmental disabilities face when it comes to how others perceive their ability to make their own decisions. Here are some practical ways to understand and support informed consent (Approaches to Determine and Manage Sexual Consent Abilities for People With Cognitive Disabilities: Systematic Review):
Informed Consent Is Possible—with Supports
Adults with intellectual or developmental disabilities (IDD) can often provide valid informed consent when information is delivered in an appropriate and accessible way. A formal guardian isn’t always required, nor does an absence of a guardian necessarily indicate incapacity (IDD Toolkit).Assessing Decision-Making Capacity
Capacity is both decision and context-specific—not a one-size-fits-all attribute. It can fluctuate over time and across different situations, and should be continually assessed (IDD Toolkit).Supported Decision-Making (SDM) Enhances Autonomy
SDM is an alternative to guardianship where a trusted supporter helps an individual understand, weigh, and communicate decisions—without replacing their legal capacity (Considerations for Alternative Decision-Making When Transitioning to Adulthood for Youth With Intellectual and Developmental Disabilities: Policy Statement | Pediatrics, Impact | Volume 23, Number 2 | Sexual Expression for Adults with Disabilities: The Role of Guardianship). The UN Convention on the Rights of Persons with Disabilities recognizes SDM as a fundamental right (Promoting health care decision-making capabilities of adults with intellectual and developmental disabilities - PMC).Communication Must Be Accessible and Person-Centered
Informed consent is only meaningful when information is tailored—using plain language, easy-read formats, visuals, and multiple sessions if needed. Personalized communication helps individuals understand their options and make truly informed choices (Equitable and accessible informed healthcare consent process for people with intellectual disability: a systematic literature review | BMJ Quality & Safety).Balancing Support with Autonomy—and the Right to Dignity of Risk
Allowing individuals to make their own decisions—even when they might be risky—supports dignity and growth. Overly protective stances risk undermining self-esteem and fostering dependency (Equitable and accessible informed healthcare consent process for people with intellectual disability: a systematic literature review | BMJ Quality & Safety).Guarding Against Coercion and Power Imbalance
Many adults with IDD experience acquiescence—complying with what others want to avoid conflict or exclusion. Supporters or carers may unintentionally override autonomy. Clinicians and caregivers must be vigilant to ensure consent is voluntary, not driven by fear or undue influence (Equitable and accessible informed healthcare consent process for people with intellectual disability: a systematic literature review | BMJ Quality & Safety).Substitute Decision-Making Should Be a Last Resort
When capacity is decisively absent, substitute decision-makers (like appointed guardians) may make decisions—but best practice includes seeking the individual's assent whenever possible (Equitable and accessible informed healthcare consent process for people with intellectual disability: a systematic literature review | BMJ Quality & Safety).
Conclusion
Informed consent for adults with developmental disabilities must be built on accessibility, individual capacity assessment, supported decision-making, and respect for autonomy. When properly implemented, these principles empower individuals to participate in—rather than be excluded from—decisions about their own lives.
Homehabilitation - Development of a new pathway for management of slow to recover children in an inpatient rehabilitation ward
ABSTRACT
Purpose
Paediatric rehabilitation patients who are slow to recover present a unique challenge to support in an intensive rehabilitation setting. Traditional intensive, goal-directed rehabilitation models of care that focus on recovery do not cater for the complex presentations and poorer functional outcomes associated with catastrophic injuries in a paediatric population.
Materials and methods
A group of 24 experts from a paediatric rehabilitation setting have developed a series of consensus statements through a modified Delphi process. The primary purpose was to develop and describe a new expert consensus based model of service delivery (Homehabilitation) that supports children requiring a slower stream approach to rehabilitation in an inpatient setting.
Results
This paper provides two options for children to be supported through either an; i) intensive goal-directed model of rehabilitation or ii) a slower approach that focuses on optimising goals of comfort, participation and ease of caregiving whilst supporting a timely, safe and sustainable discharge home.
Conclusions
Developing a well-defined, slow stream model of care that focuses on optimising the patient's comfort, maximising remaining skills and providing family education will help assist children who are slow to progress. This approach provides families with a more structured and supportive discharge process.
Plain language summary
Paediatric rehabilitation patients who have suffered catastrophic illness or injury frequently do not respond to a traditional goal-directed rehabilitation model of care.A slower “Homehabilitation’ model that prioritises goals of comfort, participation, ease of caregiving and family adjustment was developed to support children who are slow to progress.Having two distinct but similar models of care for paediatric rehabilitation may support children suffering catastrophic injuries or life limiting conditions to commence home-based contextual therapy earlier.
Alzheimer's disease Stage 1 and 2: Biology, diagnostics, and treatment
ABSTRACT
Advances in biomarker technology, digital cognitive assessments, and amyloid-targeting therapies have redefined the opportunities for accurate and early diagnosis and care of Alzheimer's disease (AD). These advances also create new possibilities for intervention before the onset of cognitive impairment. This paradigm shift has increased the focus on Stages 1 and 2 of AD, in which individuals are cognitively unimpaired but exhibit biological evidence of disease. While early identification of AD offers an opportunity to intervene early to delay progression and preserve quality of life, it also presents complex challenges related to communicating diagnostic results to patients and their families, contextualizing the cost effectiveness of early diagnosis and treatment, and implementation of and equitable access to treatments. Recent, successfully enrolled, preclinical AD trials highlight the complex strategies required to identify asymptomatic, biomarker-positive individuals on a large scale, and demonstrate critical knowledge gaps in inclusion, follow-up, and long-term outcome measurement. The Spring 2025 Alzheimer's Association Research Roundtable (AARR) meeting brought together academics, clinicians, industry, and regulatory leaders to exchange perspectives on current challenges, key learnings, and potential strategies for identifying and treating individuals in very early stages of AD, effectively and safely. This paper presents key takeaways from the Spring 2025 AARR meeting.
Highlights
New criteria for Alzheimer's disease (AD) enable early identification of AD pathology.
Blood tests and digital cognitive assessment tools may facilitate early and personalized care.
Plasma biomarkers may be scalable in clinical settings but need confirmation or follow-up assessments in those individuals with equivocal results.
Early therapy shows best results in people with lower initial amyloid and tau burden.