Supporting People with IDD During the Holidays: Finding Joy, Comfort, and Calm for DSPs

The holiday season brings excitement, tradition, togetherness — and sometimes a little chaos. For many people with intellectual and developmental disabilities (IDD), including those with Down syndrome, autism, cerebral palsy, and other disabilities, this time of year can be full of joy but also full of change: new routines, different foods, busy environments, louder sounds, emotional energy, and social expectations.

For supporters, whether you’re a direct support professional, family member, case manager, or residential team member, this season can also be a lot. You’re juggling schedules, managing transitions, creating meaning, and holding space for others’ emotions, all while trying to make the holidays special. The support of the community and society is especially important during the holidays to foster inclusion and belonging for people with IDD.

With some thoughtful planning and gentle pacing, the holidays can be a time of connection, comfort, and celebration for everyone—a meaningful part of life for all, including those with IDD. Changes in routines and environments can be especially challenging for children with IDD, as childhood is a critical time for development.

Here are some ideas and reminders to help create a joyful, person-centered holiday season. When honoring personal preferences and strengths, it is important to recognize and support each individual’s unique abilities during the holidays.

 

Celebrate in Ways That Feel Meaningful — Not Overwhelming

Holidays don’t have to be loud, crowded, or fast-paced to be special. Many people with IDD prefer predictability, routine, and quiet comfort. Consider activities that bring warmth and joy without overstimulation:

• A cozy holiday movie night with soft lighting (for example, watching a favorite film can help practice social and communication skills)
• Listening to seasonal music at a calm volume (an example of a relaxing activity that can support sensory regulation and encourage learning about different traditions)
• Crafting simple decorations or cards (this activity helps develop fine motor skills and life skills, such as following steps and expressing creativity. These activities also help develop other skills, such as problem-solving and adapting to new situations. For example, choosing materials or fixing a mistake while crafting encourages problem-solving and flexibility.)
• Walking or driving to enjoy neighborhood lights (for example, this can be an opportunity to practice community navigation and observation skills, as well as develop other skills like patience and social interaction when sharing the experience with others)
• Baking or preparing safe, favorite seasonal treats (an example of building life skills like measuring, following instructions, and working together. Baking also supports other skills, such as problem solving when a recipe doesn’t go as planned, and teamwork.)
• Reading winter-themed books or stories (this supports literacy skills and provides a chance to learn about seasonal events)
• Setting up a small “winter wonder” sensory area with soft textures and gentle lights (for example, this can help individuals learn to self-regulate and explore sensory preferences)

What’s most important is honoring personal preferences. Recognizing individual abilities and supporting the development of skills ensures that each person’s unique strengths are valued. Ask questions like:

• What parts of the season do you enjoy?
• Would you like a quiet activity or something more energetic?
• Are there traditions you love or ones you’d like to skip?

Voice and choice make celebrations meaningful.

 

Offer Comfort and Familiarity for Individuals with Intellectual and Developmental Disabilities

This time of year often changes routines, staffing, and schedules. Familiar items and rituals can create a comforting sense of stability and support adaptive behavior, helping individuals manage changes in their daily routines and self-care tasks, which can impact not only their emotional well-being but also the functioning of various bodily systems.

• Favorite snacks or drinks (with safety in mind)
• Familiar blankets or weighted items that provide physical comfort and support the individual’s bodily needs
• Calm sensory breaks between activities
• Predictable daily routines when possible
• Visual schedules or countdowns to help prepare for change

These comforting strategies can positively impact functioning in the context of holiday changes by supporting emotional regulation and helping to regulate both emotional and physical systems, thereby maintaining adaptive behavior during disruptions.

Little comforts go a long way, especially when emotions and expectations are running high.

 

Support Emotional Well-Being

The holidays can bring big feelings. For some people, this season brings joy; for others, it brings anxiety, nostalgia, or grief. Supporting mental health for people with IDD during the holidays is essential, as emotional well-being is closely linked to overall health. Some individuals with IDD may also experience behavioral disorders and may benefit from medical support or intervention during the holidays. Gently noticing and validating feelings helps everyone feel understood:

• “This feels different today. That’s okay.”
• “It’s alright to need quiet time.”
• “It’s okay to feel excited / overwhelmed / unsure.”

Caregivers play a vital role in helping individuals express their concerns and promoting a healthy emotional environment during the holidays.

Remember: a slow pace is still festive, and quiet moments can be just as meaningful as big celebrations.

Caring for Family Members and Supporters, Too

Those who support people with IDD, whether at home or in service settings, give so much of themselves throughout the year. Supporters provide support in many ways, and having the right supports in place is essential not only for people with IDD but also for their families and family members. The holidays add layers of activity, emotion, and responsibility.

You deserve peace, too.

A little self-care can help protect patience, presence, and compassion, and support health and safety for the people you support. Some small ways to reset during the season include:

• Taking a few deep breaths during busy moments
• Enjoying a warm drink or quiet break
• Connecting with colleagues or loved ones
• Celebrating tiny successes
• Giving yourself permission to rest when possible

When supporters feel supported, everyone benefits, and self-care helps both supporters and family members enable people with IDD to reach their full potential.

A Free Holiday Support Kit for You

To help bring warmth and calm into the season, we created a Warmth & Wellness Holiday Support Kit designed especially for those who support people with IDD.

It includes:

• Calming winter-wellness posters
• Peer-to-peer appreciation cards
• Gentle self-care tips
• Sensory-friendly activity ideas
• A compassionate winter well-being check-in

Download the Warmth & Wellness Holiday Support Kit here

Use these tools in team settings, residential programs, day services, family homes, educational services, special education settings, community-based services, and various residential options, or anywhere people support others. The kit is also helpful for those providing long-term support to individuals with IDD during the holiday season.

 

Warm Wishes from IntellectAbility

To every DSP, caregiver, clinician, coordinator, teacher, case manager, nurse, and family member:

Thank you for the patience, presence, and love you bring to your work every day, and especially during the holiday season. Community members, including supporters, play a vital role in helping people with intellectual and developmental disabilities (IDD) lead fulfilling lives and contribute to their communities.

Intellectual and developmental disabilities are a broader category that includes intellectual disabilities, other disabilities, and chronic conditions that often occur from birth or early childhood. These conditions can be caused by genetic conditions or syndromes, such as Down syndrome or Fragile X syndrome, and may also include cerebral palsy as a typical example. Intellectual or developmental disabilities can affect multiple body parts and systems, and are typically lifelong. The diagnosis of intellectual disability involves assessing general mental abilities and intelligence, often through standardized testing. More people are seeking support for these conditions, and organizations like IntellectAbility describe situations where these disabilities are identified, managed, and supported to improve quality of life.

At IntellectAbility, our mission is to provide tools, training, and knowledge that help people with IDD, developmental disability, and other disorders live healthier, safer, and more meaningful lives. From the Health Risk Screening Tool (HRST®) to person-centered training and free educational resources, we are honored to support those who support others in the disability community.

When supporters feel confident, informed, and cared for, the people they serve thrive, both during the holidays and throughout the year.

If you’re looking for evidence-based tools and education to help strengthen care and improve outcomes, we welcome you to explore our resources and connect with us. We provide information about the American Association of Intellectual and Developmental Disabilities, the Disabilities Education Act, and help connect people to IDD services.

Wishing you comfort, joy, and moments of quiet magic this season.

Additional Resources:

• Browse our library of free resources available for download
• Explore upcoming and on-demand free webinars in our IDD Perspectives series
• Discover our Person-Centered Thinking training and tools

Advocating for People with IDD: Why RHT and Rural Health Innovation Matters Now More Than Ever

In the quiet corners of rural America, far from metropolitan health centers and bustling medical campuses, there are people with intellectual and developmental disabilities (IDD) whose voices too often go unheard, whose lives are shaped by gaps in care that others may not even see. People with IDD experience health disparities compared to the general population, with these inequities often being more pronounced in rural areas where access to quality healthcare is limited.

At IntellectAbility, we believe that everyone — no matter where they live — deserves more than just survival. Addressing health disparities for people with IDD, especially in rural areas, is essential to ensuring they receive equitable care. They deserve health, wellness, dignity, and the chance to live a life they love.

Why we care:

Our story began with a simple but powerful truth: health and wellness flourish when uncertainty, misinformation, and risk are replaced by insight, training, and intentional support. For people with IDD, this truth is especially pressing because the margins of risk are narrower, the stakes are higher, and systemic failures too often lead to tragedy.

When you’re living in a rural community, the challenges multiply: fewer specialist providers, longer travel distances, limited provider experience in IDD, and fewer supports.

As the recent announcement of the Rural Health Transformation (RHT) Program, authorized by the Big Beautiful Bill Act, highlights, this moment could bring a real shift. The investment is not only in bricks and mortar but also points to the possibility of change in healthcare access, innovation, and workforce development. The RHT Program aims to improve healthcare delivery and healthcare access in rural communities, which directly addresses the unique needs of people with IDD.

For IntellectAbility, this also means ensuring that people with disabilities are not left behind, emphasizing the importance of health equity and the need for the healthcare system to address disparities for people with disabilities.

The gap we see for individuals with intellectual and developmental disabilities:

Time and again, we’ve seen providers and support teams say: “We knew something wasn’t right, but we didn’t have the right tools or data to act.” Too often, a change in condition, an underlying health risk, or a subtle behavioral sign goes unnoticed until it becomes a crisis.

The result? Preventable hospitalizations. Unnecessary suffering. Excessive costs, including increased administrative costs. Lives that could have been different.

These issues negatively impact health outcomes and highlight the urgent need to improve the quality of care. Emphasizing preventative care and disease prevention for people with IDD is essential to reduce these avoidable events. There is a clear need for more resources and research to support better care for people with IDD.

Here’s where we get personal: our founder, Karen Green McGowan, entered the field because she refused to accept that people with IDD had to live in conditions of neglect or oversight. Her work formed the backbone of what became the Health Risk Screening Tool (HRST®): a method of early warning, a way to replace risk with health and wellness. That has remained at the heart of everything we do at IntellectAbility.

Why this federal initiative matters and how you can leverage it:

With rural health receiving a meaningful boost through the RHT Program, earmarked to invest $50 billion over the fiscal years 2026 to 2030, the role of technology-enabled tools (like our Health Risk Screening Tool (HRST®)), training of rural clinicians (using our Curriculum in IDD Healthcare), and integrated approaches to prevention and population health are at the forefront.

For State Medicaid and Developmental Disabilities Directors, agencies, provider networks, and healthcare providers who serve people with IDD, this is a pivotal moment. Medicaid programs and covered services are essential for ensuring access to a full range of services, and changes in federal legislation can significantly impact state budgets and the ability to deliver comprehensive care.

Imagine: a rural case manager equipped not just with experience or intuition but with validated health-risk data. A provider team that can pull up dashboards, see risk trends, and respond proactively, with resources available to healthcare providers to support data-driven decision-making. A system where a person with IDD doesn’t have to wait until their next crisis to get the support they need.

That’s what we’re advocating for, and what we’re offering.

When you adopt the HRST, you are not getting just another piece of software. You’re embracing a paradigm shift in how health risk is viewed and addressed for people with IDD. You’re centering their lives, their supports, their voices, and giving your staff the tools they need to act, rather than react.

The benefits of providing access to primary care, specialty care, and behavioral health services for people with IDD are clear: improved health outcomes, greater independence, and enhanced quality of life.

A call to action for state and agency leaders:

If you are a director in a state developmental disabilities agency, in a Medicaid office, or in a provider network, serving rural communities and people with IDD: this is your moment. Invest now in tools and training that will enable your teams to detect risk earlier, plan for long-term care and service needs, intervene meaningfully, reduce ER visits and hospitalizations, and most importantly, support people with IDD in living lives of purpose, wellness, and connection. Addressing mental health, mental health services, and behavioral health is essential for people with IDD to ensure comprehensive care and early intervention.

Let’s make sure that when history looks back on this era of rural health transformation, the stories are not just about dollars invested or clinics built, but about lives changed—promoting well-being for patients and their family members. That includes people with IDD and the range of services available to support them.

Why we’re committed:

At IntellectAbility, our purpose goes beyond risk reduction. Our mission is clear: We provide tools and training to those who support people with vulnerabilities, helping them replace risk with health and wellness. Education and research are essential to improving outcomes for people with developmental disability and intellectual disability, and we are committed to advancing both.

For too long, the narrative about people with IDD has been about what they can’t do or the risks they face. We’re flipping that narrative, focusing on what they can do, who they are, and how systems can better support them, including those with intellectual disability and developmental disability.

We believe in possibility. We believe in potential. We believe that when support teams, clinicians, administrators, and leaders are equipped with resources and training, and supported by public health initiatives for people with disability, anything is possible for people with IDD.

If you’d like to explore how the HRST and our learning platform can help your team transform care in rural settings, let’s talk. Because the people we serve, and the supporters who serve them, deserve nothing less.

 

Additional Resources

• To learn more about the HRST, download our HRST Brochure.
• To discover the cost-saving benefits of the HRST, download the Optimizing HCBS & Healthcare Spending for People with IDD During  Medicaid Cuts white paper.
• To view our online staff training options, download our Academy Brochure or visit our webpage.

Detecting Health Risks Early: How the HRST® Screening Service Saves Lives

 

For people with intellectual and developmental disabilities (IDD) and other complex support needs, small changes in health can quickly become life-threatening if overlooked.

Intellectual and developmental disabilities are present from birth and can affect multiple body parts and the individual’s physical development. These disabilities impact adaptive behavior, life skills, and include everyday social skills necessary for independent living. IDDs are a broader category that includes other disabilities and disorders, such as cerebral palsy, Down syndrome, and autism; these are examples of conditions that may co-occur and require tailored support.

That’s why early detection of health risks is critical, and why IntellectAbility’s Health Risk Screening Tool (HRST) has become an essential resource for agencies, families, and providers nationwide.

 

What Is the HRST?

 

The HRST is a validated, web-based, HIPAA-compliant screening tool designed to detect health destabilization early in at-risk populations. It looks for risks across a wide range of conditions, including IDD, aging-related disabilities, mental health, traumatic brain injury, and physical disabilities.

The tool uses a 22-item rating scale that covers five key categories. The HRST assigns scores to 22 health and behaviorally related rating items, and the total points result determines the health care level:

• Functional Status: everyday activities such as eating, walking, and toileting; the tool assesses the individual’s ability to perform daily tasks, problem solve, and other skills necessary for independent living
• Behavior: risks related to self-abuse, aggression, or communication
• Physiological: body systems most impacted by disabilities and chronic conditions
• Safety: injuries, falls, and other safety concerns
• Frequency of Services: how often someone accesses healthcare systems

The result is an objective Health Care Level (HCL) score, ranging from 1 (low risk) to 6 (highest risk). The lowest risk is Level 1, and each level corresponds to an associated degree of health concern based on total points. This score helps supporters take proactive steps before risks escalate.

 

Why It Matters

 

The HRST isn’t just a checklist—it’s a proven predictor of mortality. Research spanning nearly a decade shows a direct correlation between increasing HRST scores and higher mortality rates. In other words, the tool provides measurable insight into tangible health outcomes. The HRST uses data to detect health risks and identify health concerns, supporting data-driven decision-making. It is important to update the HRST whenever significant changes occur in a person’s life, such as injuries, falls, or health emergencies, to ensure accurate risk assessment and care planning.

By using the HRST, families, direct support professionals (DSPs), and case managers gain:

• Early detection and prevention of health risks
• Clear action steps for interventions and supports
• Service and training considerations tailored to each person
• Empowerment when advocating with healthcare professionals
• Better continuity of care and person-centered planning

The involvement of supporters and providers in the screening process, along with access to resources and the availability of assistance, ensures comprehensive support and effective implementation.

Clinical review is a key part of the HRST process, with clinical reviewers such as nurses ensuring the quality and accuracy of screening results through formal evaluation. Researchers have validated the HRST through studies and ongoing evaluation, further supporting its credibility and effectiveness.

As one RN described: “People are alive today because of the HRST. It gives us a snapshot of ongoing health status and helps us act before small issues become crises.”

 

The HRST Virtual Screening Services

 

Historically, HRST Screenings were conducted only by direct support staff or clinicians in support settings.

The traditional HRST service is a comprehensive offering that includes the Health Risk Screening Tool, training, implementation, ongoing support, and data integration to ensure effective use and compliance.

The HRST web-based application enables providers to complete screenings online, ensuring secure and efficient data management, as well as interoperability with other health systems. Assistance is available to users throughout the screening process, providing support for login, technical, or clinical concerns. Providers play a key role in implementing and managing the HRST service within their organizations.

As a value-added service, IntellectAbility now offers a Virtual Screening Service that enables providers and agencies to leverage the trained staff at IntellectAbility to conduct screenings virtually.

This service includes virtual HRST screenings with trained IntellectAbility HRST Screeners, who will guide the process and handle the full screening from start to finish.

This service includes initial screenings, episodic screenings, and annual updates.

 

What to Expect During a Screening

 

HRST screenings are conducted virtually through Microsoft Teams. An IntellectAbility-trained HRST Screener leads the process by asking a structured series of yes/no questions. Respondents should be people who know the individual well and can provide accurate information about their health and daily life. Support people who are familiar with the individual can also assist in the screening process. These supporters do not need clinical qualifications and can play a crucial role in supporting the individual across different environments.

To ensure accuracy, it’s important to prepare before the screening by gathering:

• Current diagnoses
• A full list of medications (including vitamins, supplements, and any recent changes)
• Relevant health history (seizures, falls, hospitalizations, behavioral supports, etc.)
• Information on daily living supports such as eating, toileting, and mobility
• Assessment of other skills and life skills, including intellectual functioning and adaptive behavior, which are important for independent functioning and quality of life

At the end of the session, the Screener will share the Health Care Level and recommended service and training considerations, providing support teams with a clear roadmap for action.

 

A Tool with Proven Impact

 

The HRST was first developed in the early 1990s to help people with disabilities safely transition from institutions into the community. Since then, it has been used to screen over 130,000 people across multiple states and agencies. Today, it remains the only validated health risk screening tool designed specifically for people with intellectual or developmental disabilities (IDD).

The HRST can detect health risks associated with other conditions, including behavioral health and behavioral disorders, which may affect individuals with intellectual or developmental disabilities. The tool is also used in situations where these disabilities are present and can impact various aspects of a person’s life.

Its purpose has always been the same: to detect risks early, prevent avoidable health crises, and support safer, healthier lives.

 

Additional Resources

• To learn more about the HRST, download our HRST Brochure.
• To see the impact the HRST made with the Ohio Department of Developmental Disabilities, download our latest white paper, The Impact of the Health Risk Screening Tool (HRST) on an Ohio IDD Population.
• To discover the cost-saving benefits of the HRST, download the Optimizing HCBS & Healthcare Spending for People with IDD During  Medicaid Cuts white paper.

Want to learn more or schedule a screening?

Contact us at HRSTScreeningService@ReplacingRisk.com or visit  https://replacingrisk.com/hrst-virtual-screening-service/

Understanding the Health Risk Screening Tool (HRST®): A Proven Way to Replace Risk with Health and Wellness

By Aliah Farley

Every day, people with intellectual and developmental disabilities (IDD) face health risks that often go unnoticed until it’s too late. These health risks affect individuals with IDD, who may require specialized support and monitoring. Many intellectual and developmental disabilities are present at birth or become apparent in early childhood, meaning these conditions are often observable from the very beginning of life. These unrecognized risks can lead to unnecessary suffering, hospitalization, and even preventable deaths.

The Health Risk Screening Tool (HRST), developed by IntellectAbility, was designed to change that reality by helping supporters identify and mitigate health risks early, ensuring individuals receive the right care at the right time.

 

What Is the HRST?

 

The HRST is a validated, field-tested, and HIPAA-compliant web-based tool that helps detect health destabilization in people with IDD and other at-risk populations. The HRST can be used on-site at provider locations, offering convenient health risk assessments for individuals where they receive services. Accessible 24/7, it equips supporters—ranging from direct support professionals to nurses and case managers—with actionable health information that improves outcomes and enhances person-centered planning.

Unlike static documentation systems, the HRST evolves with the person as they move through life, and it is recommended that an HRST screening be completed annually or after an episode, such as a fall or seizure. Organizations can customize the HRST to fit their specific needs and integrate it with other electronic systems for seamless data import and export. As Dr. Craig Escudé, President of IntellectAbility, describes it:

“The HRST goes far beyond routine documentation software. It evolves with the person as they travel through life. It is a living, breathing, person-centered health risk tool that provides actionable steps that save lives.”

 

How the HRST Works

 

Using a simple 22-item scale, the HRST assesses risks across various categories, including physical, behavioral, and medical. It also assesses functions such as cognitive, sensory, and physical abilities. Each question is answered objectively with “Yes” or “No” responses. These responses generate a score that determines a person’s Health Care Level (HCL)—with a range from 1 (lowest risk) to 6 (highest risk). The result of the HRST assessment determines the appropriate Health Care Level.

This level then automatically generates Service and Training Considerations, providing clear, specific guidance to the support team on the actions to take to mitigate health risks.

For example:

• Service Considerations might suggest a physician evaluation or medication review.
• Training Considerations direct staff on specific ways to support the person in their daily life to promote safety and wellness.

The HRST not only identifies risk. It empowers teams to take action.

 

Who Benefits from the HRST?

 

The HRST supports multiple levels of the IDD service system, including:

• People with IDD – by identifying often-missed health risks and underlying health conditions before they become emergencies. The HRST is especially valuable for children with developmental disabilities, as early identification can improve outcomes.
• IDD Provider Agencies – by informing person-centered plans and supporting continuity of care amid staff turnover.
• Managed Care Organizations (MCOs) – through improved care coordination, reduced hospitalizations, and better oversight of health and safety.
• State IDD and Medicaid Administrators – by offering a reliable, scalable, data-driven approach to health risk management and quality reporting, often eligible for Medicaid match funding through MAC or waiver billing.

Even two people with the same condition may be affected differently by health risks, highlighting the importance of individualized assessment and support.

Over 130,000 people are currently monitored using the HRST across more than 2,000 provider agencies and 20 states.

 

Evidence-Based and Predictive

 

The HRST’s reliability is backed by decades of research. It is important for users to understand the predictive value of the HRST when interpreting its results.

A study published in the Journal of Nursing Measurement (Vol. 28, No. 1) confirmed that the HRST’s Health Care Levels are predictive of mortality, meaning that as a person’s HCL increases, so does their risk of death. Researchers have validated the HRST through multiple studies, including additional long-term studies by the Center for Outcome Analysis, which further validated that the HRST can serve as a basis for determining healthcare needs and nursing acuity.

Annual mortality reports, such as those from the Georgia Department of Behavioral Health and Developmental Disabilities, continue to show a statistically significant correlation between HRST scores and mortality trends, demonstrating that early detection truly saves lives.

 

Integrated, Person-Centered, and Customizable

 

The HRST is designed to fit seamlessly into existing systems. It integrates with other platforms, such as ImpruvonHealth, to share key data, like demographics, medications, and diagnoses. It can also connect directly to telemedicine providers, such as StationMD, providing clinicians with immediate access to essential health risk data collected during each telemedicine visit.

More importantly, the HRST is deeply person-centered. It helps teams balance the “important to” and “important for” aspects of planning, ensuring that both wellness and personal preferences remain at the heart of every decision. This alignment supports compliance with CMS person-centered planning requirements under the HCBS Final Rule.

The HRST is a comprehensive program that offers a range of services to support individuals with IDD. These services include health risk assessments, personalized care planning, and accommodations to promote full participation and well-being.

 

Adjacent Uses of HRST Data

 

Beyond screening and planning, HRST data can be used to:

• Support mortality reporting and state performance measurement, ensuring alignment with policies that guide reporting and compliance
• Inform training initiatives for support staff, including education and ongoing learning opportunities
• Guide rate setting and budget allocation within Medicaid programs
• Monitor continuity of care during staff transitions
• Provide data for incident management, Level of Care (LOC) determinations, and medical home health eligibility

HRST data can also help improve health outcomes in communities by identifying conditions that influence health and participation.

 

Proven Impact, Real Lives Changed

 

From state-level agencies to individual providers, the HRST has become an essential part of proactive health management. The HRST helps identify problems, such as difficulties with hearing or cognitive functions related to the brain, as well as health risks affecting the body. As one nurse shared:

“Not only did the HRST accurately screen health risks, but it also assisted with identifying health issues that needed further evaluations.” – D.A., RNC, NP

And another put it simply:

“People are alive today because of the HRST.” – M.W., RN

 

Affordable, Scalable, and Supported

 

HRST licensing is offered on a per-person pricing model, making it accessible for organizations of all sizes. With scalable options and eligibility for Medicaid match funding, the HRST delivers high value at a low cost—providing organizations with a 24/7, data-driven tool that directly improves health and wellness outcomes. The HRST supports prevention by identifying health risks early, enabling organizations to take proactive steps and avoid potential health issues. This tool is also helpful for organizations seeking to improve health outcomes for the people they serve.

For more information and additional resources, see the following links provided in the next section.

 

Additional Resources

 

• To learn more about the adjacent uses of the HRST, download IntellectAbility’s “Utilizing the Health Risk Screening Tool to Improve Health Equity for People with IDD” white paper.
• To discover how to optimize HCBS and Healthcare Spending with the HRST, download IntellectAbility’s “Optimizing HCBS & Healthcare Spending for People with IDD During Medicaid Cuts” white paper.
• To review the Journal of Nursing Measurement study concluding that the HRST’s Health Care Level (HCLs) are predictive of mortality, download a copy.
• To see the impact of the HRST in Ohio, download the Ohio Department of Developmental Disabilities Evaluation.
• To learn more about how the HRST supports Person-Centered Planning, download IntellectAbility’s Promoting the Balance Between Risk and Personal Choice article.

 

Take the Next Step Toward Safer, Healthier Lives

 

The HRST continues to help states, providers, and managed care organizations replace risk with health and wellness for the people they support.

📞 Contact IntellectAbility today for a free demonstration.
🌐 ReplacingRisk.com
📧 Inquiries@ReplacingRisk.com
📱 727.437.3201

Top Reasons People Don’t “Act Right”: Understanding the Medical and Environmental Roots of Behavior in People with IDD

When an individual with intellectual and developmental disabilities (IDD) begins to act differently — withdrawing, becoming irritable, losing interest in food or daily routines — supporters often describe it simply as, “They’re just not acting right.”

But what does that really mean? And more importantly, what does it tell us?

Behind those few words can lie an entire story: a hidden medical condition, a medication side effect, an illness (such as an infectious disease), a loss, a change in environment, or even something as simple as an earache.

In the most recent IDD Perspectives webinar, Top Reasons People Don’t “Act Right,” hosted by Dr. Craig Escudé, President of IntellectAbility®, and featuring Dr. Matt Holder, a physician and past president of the American Academy of Developmental Medicine and Dentistry (AADMD), the discussion dug deep into the real causes behind behavior change, and how misunderstanding these signs can have serious, even life-threatening consequences. Dr. Holder is also closely involved with the American Association of Intellectual and Developmental Disabilities (AAIDD). This leading organization emphasizes evaluating individuals with intellectual disabilities to identify appropriate supports and services for lifelong community thriving.

Breaking Through the Wall: Advocacy and Persistence in a Complex System

Dr. Holder began the session with a memorable reflection on perseverance and advocacy:

“You just keep hitting your head against the wall until the wall breaks.”

It was a metaphor not for futility, but for persistence — for the kind of determination it takes to make progress in a healthcare system that too often wasn’t built with people with IDD in mind.

The field of IDD medicine requires navigating a level of complexity most clinicians aren’t trained to handle. “Everything we do,” Dr. Holder explained, “is a level of complexity that most people outside the field can’t quite get their mind around.” Too often, systems revert to oversimplified solutions — ones that fail to meet real needs or perpetuate cycles of poor outcomes.

This is especially true, he said, when Medicaid systems push people with IDD into traditional fee-for-service models that don’t reflect the preventive, team-based care they require. “That’s the very system that has continuously failed them,” he noted, “and we have to keep pushing for change.”

When Behavior Is the First Sign of a Medical Problem

As Dr. Escudé recalled from his decades in clinical practice, two phrases repeatedly surfaced when he was asked to see a person with IDD:

1. “They’re not eating.”
2. “They’re just not acting right.”

Those statements, while vague, were often the first clues that something was medically wrong. Because many people with IDD experience communication challenges, physical pain or discomfort can easily manifest as changes in mood or behavior.

“If I’m hurting and I can’t tell anyone what I’m feeling,” Dr. Escudé said, “

I’m going to find some way to express it.”

Hidden or unrecognized medical issues — like ear infections, constipation, reflux, dental pain, urinary tract infections, or side effects from medication — are among the most common underlying causes of behavioral changes. These issues are often identified only after careful assessment. Multiple factors, such as medical, environmental, and psychological elements, can contribute to changes in behavior.

Dr. Holder shared a particularly striking story: a man in his thirties, labeled “terminal” and placed in Hospice for “failing to thrive,” was found to have a simple, untreated UTI. Once treated, he recovered within days. “They just decided it was time for him to die,” Holder said. “Three days after antibiotics, he perked up — and was fine.”

It was a sobering reminder that what’s perceived as “behavioral” or “end of life” can often be a missed medical condition in disguise.

“See People as People First”

In response to such examples, Dr. Escudé offered one of the webinar’s most resonant reminders:

“We have to see people as people first — as human beings — and treat their medical problems as we would anyone else.”

This person-centered approach is at the heart of IntellectAbility’s mission: helping supporters and clinicians identify health risks that are often missed, and empowering them with the tools and training to replace risk with health and wellness. Recognizing each individual’s unique abilities and needs is essential to providing effective support. A comprehensive approach to care considers the whole person, not just their diagnosis, ensuring that support plans are tailored to the individual’s strengths and preferences.

Polypharmacy: When the “Fix” Becomes the Problem

Many times, a person’s distress or “behavioral” change is met with medication rather than investigation. Both physicians called out the alarming overuse of psychiatric and sedative drugs in the IDD population.

“We missed the thing causing the behavior, treated it with a medicine that has long-term side effects, ignored the side effects, and ten years later, we’re paying huge dollars for something that could have been prevented.” — Dr. Matt Holder

This cycle, prescribing medication to control behavior without identifying its root cause, can lead to polypharmacy, where multiple medications interact and compound side effects. Over time, the result can be over-sedation, movement disorders, aspiration pneumonia, and avoidable hospitalizations.

As Dr. Holder put it, “There’s so much preventable polypharmacy, so many preventable long-term side effects — and it really starts here, with the misinterpretation of behavior.”

Environmental and Social Triggers: When the Context Changes

Not every behavioral shift stems from a medical issue. Environment and social context often play equally important roles. A change in staffing, moving homes, a lost friendship, or even subtle shifts in daily structure can cause significant distress.

Dr. Holder highlighted the transition period between adolescence and adulthood as one of the most fragile times for people with IDD. When young adults “age out” of school systems and structured programs, the sudden loss of support networks can create instability, family burnout, and emotional distress. Community-based programs play a crucial role in providing ongoing assistance and support services, helping individuals remain connected and included within their community. Assistance from these community programs can help individuals navigate transitions and maintain stability during these challenging periods.

“It doesn’t always mean the person has to move out of the house,” he said, “but it does mean we have to help the family restructure their system of support before a crisis happens.”

Even sensory differences, like sensitivity to light, sound, or certain textures, can be powerful behavioral triggers. Dr. Escudé reminded attendees that “we’re all different,” and that both overstimulation and understimulation (boredom, lack of engagement) can cause frustration or attention-seeking behaviors.

Looking for Patterns: The Key to Understanding Behavior

Throughout the conversation, both presenters emphasized the importance of looking for patterns — what happens, when it happens, and what’s happening around it.

“It’s looking at the patterns and the context of behavior that can really help you figure things out.” — Dr. Craig Escudé

Consistent documentation of when behaviors occur and what precedes them can often reveal whether the cause is environmental, sensory, medical, or emotional in nature. Noting changes in adaptive behavior and cognitive functioning can also provide important clues to underlying issues, as shifts in these areas may indicate changes in intellectual or functional status. These patterns often serve as the missing link between confusion and understanding.

Misdiagnosis and the Cost of Overshadowing

Another common trap is diagnostic overshadowing, when behavioral or physical changes are automatically attributed to a person’s disability rather than a treatable condition.

Diagnosing mental health conditions and co-occurring conditions, such as autism spectrum disorder, in individuals with intellectual and developmental disabilities is particularly challenging. The onset and severity of symptoms can make accurate diagnosis difficult, especially when communication barriers exist. Recognizing mental health and neurodevelopmental issues requires careful assessment to avoid misattributing symptoms and to ensure appropriate support.

Dr. Holder cautioned that psychiatric diagnoses like depression, anxiety, or psychosis are often applied prematurely, particularly when communication barriers prevent accurate assessment. He described seeing people discharged from hospitals with diagnoses like ADHD or psychosis despite being nonverbal or medically complex.

“Once you have that diagnosis,” he said, “it explains everything else that goes wrong from now on. That’s something you don’t want to go lightly into.”

The result, he warned, is a “tail-wagging-the-dog” cycle: medications cause new side effects, which are misread as new behaviors, leading to even more medications.

Empowering Families, Direct Supporters, and Clinicians

The final portion of the webinar focused on solutions — specifically, what families and supporters can do when clinicians fail to listen or understand.

Dr. Holder’s advice was direct:

“If your doctor doesn’t listen to you, get a new doctor. Period.”

He explained that most physicians have received little to no training in IDD healthcare and that supporters often know far more about specific syndromes, conditions, or needs than the clinician does.

Dr. Escudé added that when doctors are willing to learn, families should seize the opportunity to collaborate and share resources. It is important to discuss care options with providers to ensure the best possible outcomes.

That’s one reason he wrote Clinical Pearls in IDD Healthcare: to provide families, nurses, and direct support professionals with a physician-written resource they can share with providers to encourage more accurate and compassionate care. Family support plays a critical role in advocating for individuals, coordinating care, and ensuring ongoing evaluation. The goal, he said, is simple: help clinicians “see what they’ve never been taught to see.”

Education, Prevention, and Person-Centered Practice

In closing, both doctors underscored that behaviors are forms of communication, not problems to suppress. Early identification and intervention during childhood are critical for supporting children with intellectual and developmental disabilities (IDD). Eligible children are entitled to special education and related services provided under the Individuals with Disabilities Education Act, which ensures access to appropriate support and inclusion. Through these services, individuals with IDD develop critical adaptive and cognitive skills, ultimately improving their lives throughout their development.

Whether the root cause is pain, frustration, sensory overload, or emotional loss, each behavioral change offers a chance to look closer — not medicate faster.

“Behavior is communication. When a person isn’t acting right, it’s not a problem to fix — it’s a message to understand.” — Dr. Craig Escudé

Key takeaway:

When people with IDD “don’t act right,” our first response shouldn’t be “What’s wrong with them?” but rather, “What are they trying to tell us?”

By slowing down, investigating, and listening — both medically and personally — we can prevent suffering, improve outcomes, and create systems that ultimately serve the people they are intended for.

Explore related resources:

• E-Learning Course: Actions Speak Louder Than Words — Learn to identify the medical causes of behavior change.
• Book: Clinical Pearls in IDD Healthcare — A physician’s guide to improving health outcomes for people with IDD.
• Podcast: IDD Health Matters — Interviews with healthcare leaders, family members, and advocates making a difference in the field.

For more resources, including practical guides and tips on effective healthcare spending in IDD, visit IntellectAbility’s website or explore the complete IDD Perspectives webinar series.