IDD Perspectives: Reproductive Health for Women with IDD: Breaking Barriers to Preventive Healthcare

 

For too long, reproductive and preventive healthcare for women with intellectual and developmental disabilities (IDD) has been overlooked, misunderstood, or delayed until a crisis occurs. In the IDD Perspectives webinar, Reproductive Health for Women with IDD, a panel of experts addressed this gap and outlined practical, person-centered solutions.

 

Hosted by Dr. Craig Escudé, FAAFP, FAADM, FAAIDD, President of IntellectAbility, the session featured Dr. Jennifer LeComte and Dr. Wendy Aita, leaders in inclusive healthcare and trauma-informed practice. Together, they explored how providers, supporters, and systems can improve access to reproductive health services for people with IDD, who often face significant barriers and systemic challenges in accessing both reproductive and mental health care.

The discussion emphasized the importance of equitable access to reproductive health services for people with disabilities, highlighting that fair and unbiased availability is fundamental to achieving reproductive justice and autonomy. The need for equitable reproductive health care for women with IDD was underscored, recognizing the systemic disparities they face.

The panel also stressed the importance of disability inclusion in reproductive health discussions and systems to ensure all people are considered in support planning. Their message focused on improving access to reproductive health services for people with IDD, addressing the removal of barriers and promoting inclusivity.

Their message was clear: preventive reproductive health care for women with IDD is essential!

 

Why Preventive Sexual and Reproductive Health Care Matters for People with IDD

 

Routine screenings such as Pap smears, mammograms, HPV testing, and clinical breast exams save lives. Yet many women with IDD never receive these services on schedule or even at all.

Dr. LeComte emphasized that too often, people with IDD are pushed toward emergency health care or sedation instead of receiving routine, person-centered preventive services. This approach leads to higher rates of avoidable complications and delayed diagnosis of treatable conditions. Identifying risk factors during preventive visits is essential for early detection and effective intervention. This can lead to increased morbidity, mortality, and more healthcare trauma.

Dr. Escudé noted that the outdated belief that people with IDD “don’t live long enough” to need preventive health care is both inaccurate and harmful. People with IDD are living longer, fuller lives, and they deserve the same standard of healthcare as everyone else. This includes a focus on preventative healthcare.

Providing adequate time during appointments is crucial to ensure women with IDD receive comprehensive, respectful, and accessible reproductive health care.

Understanding Health Disparities in Women with IDD

 

Women and girls with IDD face compounded health disparities related to gender, disability, and access to healthcare. Compared to other women, women with IDD often experience greater challenges in achieving equitable reproductive health outcomes. These disparities are especially visible in reproductive health. Women with IDD are more likely to report fair or poor health compared to other women, underscoring the need for targeted healthcare and support services.

Dr. Aita highlighted that women with disabilities, including those with cerebral palsy, experience significantly higher mortality rates from breast and cervical cancer. Women with chronic physical disabilities, such as difficulty walking, also face unique health challenges and require tailored healthcare and support services. This is largely because they are not screened regularly.

Barriers to screening mean that conditions that could be detected early often go unnoticed until they become life-threatening. Chronic conditions and functional limitations can further complicate access to preventive healthcare. Preventive healthcare reduces suffering, saves resources, and improves long-term outcomes, but only if people can access it.

Drs. Escudé, LeComte, and Aita discussed the barriers that many people with IDD experience when trying to access preventative and reproductive healthcare.

 

Patient-Level Barriers: Fear, Trauma, and Lack of Information

 

Many women with IDD face significant personal barriers when seeking reproductive healthcare.

These include fear of unfamiliar procedures, anxiety about physical touch, and even previous medical or sexual trauma. A lack of understanding of what will happen at the appointment and communication challenges or barriers may also become a barrier to many women accessing reproductive healthcare as well.

Accessible reproductive health information is essential for women with IDD, as limited access to such information can further restrict their ability to make informed decisions and exercise their rights to health and wellness. The disabilities experience, encompassing the unique challenges and barriers women with intellectual and developmental disabilities face in healthcare, reproductive rights, and social participation, shapes how they interact with the healthcare system and influences their health outcomes.

Because reproductive exams involve private parts of the body, they can feel overwhelming, especially for people who have been taught that these areas should never be touched. Additionally, some women with IDD may have experienced sexual violence, which can further complicate their access to healthcare or support.

Dr. Aita stressed that people must be given time, preparation, and permission to move at their own pace. Preventive healthcare should never feel rushed or forced.

 

Supporter-Level Barriers: When Good Intentions Create Obstacles

 

Supporters, family members, and staff play a vital role in healthcare access. But sometimes, well-meaning supporters unintentionally become barriers.

Common challenges include:

• Believing the person is “not sexual” — when in fact, women with IDD are sexual beings with the same reproductive rights and needs as others
• Avoiding conversations about sexuality
• Discouraging private medical discussions
• Remaining in exam rooms during sensitive visits
• Assuming exams are too traumatic

Research shows that many people with mild or moderate IDD are sexually active. Ignoring this reality increases health risks and limits autonomy.

One key recommendation from the webinar was ensuring that people with IDD have private time with their healthcare providers. Confidential conversations help identify concerns, prevent abuse, and build trust.

 

Provider-Level Barriers: Gaps in Medical Training

 

Healthcare providers often lack formal training in caring for people with IDD, especially in sensitive areas like reproductive health and sexual health. Medical providers play a critical role in ensuring that reproductive healthcare is accessible, inclusive, and non-discriminatory for people with disabilities.

Dr. LeComte explained that many medical schools and residency programs provide limited exposure to disability-focused healthcare. As a result:

• Providers may feel unprepared
• Negative attitudes among providers, such as misconceptions and biases, can impact the quality of reproductive healthcare for women with IDD
• Assumptions replace individualized healthcare or support
• Preventive screenings are deprioritized
• Patient priorities are overlooked

Addressing sexual health as part of comprehensive healthcare is crucial to ensure that women with IDD receive the information and support they need.

Without asking “What matters to you?” providers may focus only on medical diagnoses while ignoring relationships, sexuality, and quality of life.

Inclusive education and clinical exposure are essential to closing this gap.

 

System-Level Barriers: When Access Isn’t Accessible

 

Even when patients and providers are motivated, system barriers can prevent healthcare or support.

These include:

• Inaccessible buildings
• Lack of accessible equipment, such as height-adjustable examination tables, which are essential for equitable healthcare
• Limited wheelchair-accessible mammography due to insufficient accessible equipment
• Inadequate lifting equipment
• Insurance restrictions
• Medicaid coverage limits across state lines

It is crucial that healthcare facilities are physically accessible and equipped with accessible equipment to support women with IDD in receiving comprehensive reproductive healthcare.

These issues significantly impact healthcare access for women with intellectual and developmental disabilities (IDD), making it difficult for them to obtain comprehensive and equitable reproductive health services.

Dr. LeComte shared that some patients have never received a full physical exam simply because systems were not designed to accommodate them.

These structural barriers increase anxiety, discourage follow-up healthcare, and reinforce health disparities, which can further limit access to reproductive health services.

 

Person-Centered Solutions: Preparing, Empowering, and Supporting

 

Despite these challenges, the webinar highlighted powerful strategies that improve access and outcomes.

An essential aspect of person-centered reproductive health is supporting individualized menstrual management options for women with intellectual and developmental disabilities (IDD). Patient-centered healthcare is especially important in reproductive health for women with IDD, as it ensures services are accessible, respectful, and tailored to each person’s needs and preferences. This includes ensuring access to information and choices about menstrual suppression, contraception, and other options, while respecting autonomy and personal preferences, including reproductive autonomy and access to family planning options and family planning services as a key component of reproductive healthcare.

 

1. Education and Self-Advocacy

The RISN Center team developed accessible materials to help women understand their bodies and their rights. These include:

• Plain-language guides
• Visual tools
• Demonstration models
• Step-by-step explanations

Providing accessible education and advocacy tools is especially important for people of reproductive age with IDD, as they face unique barriers to reproductive healthcare and need support to make informed decisions.

Patients learn what will happen, why it matters, and how to advocate for themselves.

 

2. Pap Camp: Preparing for Success

One innovative program discussed was Pap Camp, a supportive, hands-on preparation experience.

Participants:

• Practice using medical models
• Learn what exam tools look and sound like
• Create personalized comfort plans
• Establish stop signals
• Learn relaxation strategies

This preparation significantly increases screening completion and reduces the need for sedation. Similar preparation strategies can also help improve access to prenatal healthcare for women with intellectual and developmental disabilities by reducing barriers and supporting positive healthcare experiences.

 

3. Trauma-Informed, Sensory-Sensitive HealthCare

Providers are encouraged to adapt exams based on individual needs, such as:

• Dimmed lighting
• Weighted blankets
• Clear verbal explanations
• Preferred support persons
• Breaks during exams

These adjustments help patients feel safe and respected.

 

4. Coordinated Health Care During Sedation

When sedation is necessary for other procedures (such as dental work), providers can coordinate screenings at the same time. This minimizes repeated trauma and reduces healthcare burden.

 

New Opportunities: HPV Self-Collection

 

A promising development discussed was HPV self-collection testing.

This method allows patients to collect samples using a simple swab, often without a speculum exam.

Screening for sexually transmitted infections is also a critical component of comprehensive reproductive healthcare for women with intellectual and developmental disabilities (IDD), ensuring that prevention, testing, and treatment are accessible and inclusive.

Benefits include:

• Increased comfort
• Greater autonomy
• Reduced anxiety
• Better access for people with physical disabilities

Increased autonomy in screening can also support informed decision-making about birth control for women with IDD.

While insurance coverage is still expanding, this approach may dramatically improve screening rates in the coming years.

 

National Progress: Growing Institutional Support

 

The American College of Obstetricians and Gynecologists (ACOG) has begun prioritizing disability-focused training in residency programs. These programs are increasingly addressing disabilities related health considerations in reproductive healthcare. Given that reproductive health needs affect a significant portion of the total US population, this shift signals growing recognition that inclusive healthcare is a professional responsibility.

The panel expressed hope that other national organizations will follow, helping reduce ableism and improve quality across healthcare systems.

 

Putting People First in Reproductive Healthcare

 

Throughout the webinar, one theme remained constant: people with IDD must be at the center of their healthcare and support.

That means:

• Listening to their voices
• Respecting their boundaries
• Preparing them thoroughly
• Including them in decisions
• Recognizing their full humanity
• Acknowledging intersecting identities—such as race, class, and sexuality—and how these impact reproductive health experiences and access for women with IDD
• Supporting their individual choices regarding family growth, including reproductive autonomy and access to family planning options

Preventive reproductive healthcare is not just about tests and screenings. It is about dignity, safety, autonomy, and equity.

 

Supporting Inclusive Healthcare Through Education

 

Dr. Escudé closed by encouraging clinicians and organizations to continue building their capacity through training and person-centered practices, including:

• The Curriculum in IDD Healthcare
• Person-Centered Thinking training
• Ongoing professional development

Education and training are especially vital for advancing women’s health for women with IDD, highlighting women’s health as a key area for inclusive and equitable reproductive healthcare that addresses the unique barriers faced by this population.

These tools help ensure that healthcare systems serve people with IDD not as exceptions, but as valued patients.

 

Final Thoughts

 

Reproductive health for women with IDD is a public health priority. When barriers are removed and person-centered strategies are implemented, lives are improved and saved.

As this IDD Perspectives webinar demonstrated, meaningful change happens when clinicians, supporters, and systems work together to ensure that no one is left behind.

 

Additional Resources

 

• Watch the full IDD Perspectives Reproductive Health for Women with IDD webinar, and explore our full IDD Perspectives webinar series
• Learn more about the Curriculum in IDD Healthcare eLearn or download the brochure here.
• Discover the RISN Center.
• Browse IntellecAbility’s library of free resources, blogs, and our product Knowledge Hub.
• Listen to more in-depth conversations between Dr. Craig Escudé and IDD health experts through the IDD Health Matters podcast.

 

Illinois QIDP Continuing Education Opportunities: Approved Online Courses for 2026

 

For Qualified Intellectual Disabilities Professionals (QIDPs) in Illinois, continuing education is required to maintain compliance—and a valuable opportunity to strengthen practice, as it helps QIDPs advance their knowledge and skills in the field. Each year, Illinois QIDPs must complete approved continuing education (CE) credits by June 30 to continue their work supporting people with intellectual and developmental disabilities (IDD).

As the deadline approaches, many professionals search for Illinois QIDP-approved CE courses that are flexible, relevant, and aligned with real-world responsibilities. IntellectAbility offers approved online training options, recognized by relevant organizations and agencies, designed specifically for professionals working in IDD service systems.

Three IntellectAbility courses—the Fatal Five for Case Managers eLearn,  Trauma-Informed Support, and Virtual Person-Centered Thinking Training (vPCTT)—are approved for Illinois QIDP CEs and provide practical, evidence-informed education that supports both health and person-centered practice. Participants receive a certificate upon successful completion of each course.

 

CEU-Approved Online Training for Illinois QIDPs

 

Illinois QIDP CE requirements focus on completing a total number of approved credits by the annual June 30 deadline, rather than mandating narrowly defined topic areas. These continuing education requirements are essential for maintaining professional licensure and certification. Because of this flexibility, many QIDPs seek courses that directly support their daily work in case management, service coordination, and interdisciplinary communication. A variety of program options are available to meet different learning needs.

Online, self-paced training allows QIDPs to complete CEs on their own schedule while still engaging with meaningful, role-specific content. These programs help QIDPs enhance their knowledge and skills, ensuring they stay current in best practices for supporting individuals with disabilities.

 

Trauma-Informed Support (3 Illinois QIDP CEUs)

The Trauma-Informed Support course is approved for 3 Illinois QIDP CEUs and provides foundational training on recognizing the impact of trauma in the lives of people with intellectual and developmental disabilities (IDD). The course explores how trauma can influence behavior, communication, and health outcomes, and equips professionals with practical strategies to respond in supportive and person-centered ways.

For QIDPs coordinating services across multiple providers and settings, understanding trauma-informed approaches can strengthen team communication, improve support planning, and help create environments that promote stability and trust. The training emphasizes practical application so professionals can immediately integrate trauma-informed principles into daily practice.

 

 

Fatal Five for Case Managers eLearn (7 Illinois QIDP CEUs)

 

The Fatal Five for Case Managers eLearn is approved for 7 Illinois QIDP CEUs and focuses on preventable health risks that disproportionately affect people with intellectual and developmental disabilities (IDD), including the challenging situations QIDPs may encounter in their roles. The course strengthens awareness of early warning signs, risk patterns, and the critical role QIDPs play in documentation, advocacy, and follow-through.

This training is especially relevant for professionals responsible for monitoring health trends, coordinating services, and ensuring that concerns are recognized and addressed across teams. Participants are expected to verify their attendance to receive CE credit.

Virtual Person-Centered Thinking Training (vPCTT) (18 Illinois QIDP CEs)

 

Virtual Person-Centered Thinking Training (vPCTT) is approved for 18 Illinois QIDP CEs, making it a high-credit option for professionals planning ahead for annual requirements. vPCTT is a comprehensive, interactive course for QIDPs, providing a structured educational experience on best practices in disability support.

vPCT helps QIDPs translate person-centered values into practical tools for assessments, planning, and ongoing coordination. The training emphasizes understanding what is important to and for people with intellectual and developmental disabilities and supports collaboration across teams and systems. Active participation in the training is essential to maximize learning outcomes and earn CEs through course activities.

Because of its depth and credit value, vPCTT is often used to complete a significant portion of CE requirements in one comprehensive course.

 

Planning Ahead for the June 30 Illinois QIDP CE Deadline

 

While many QIDPs begin searching for CEs as June 30 approaches, planning earlier in the year allows for greater flexibility and less pressure. Choosing CE-approved courses that align with professional responsibilities helps ensure continuing education supports both compliance and quality practice. It is important to register early for your chosen courses or webinars and to ensure you receive a registration confirmation email, as this guarantees access to event materials, post-examinations, and CE certificates.

Together, the Fatal Five for Case Managers eLearn (7 CEs), Trauma-Informed Support (3 CEs), and Virtual Person-Centered Thinking Training (18 CEs) provide multiple Illinois QIDP-approved CE options. Combined, these courses offer up to 28 total Illinois QIDP CEs, allowing professionals to complete a significant portion of their continuing education requirements through flexible online training.

 

Frequently Asked Questions About Illinois QIDP CEs

 

How many CEs do QIDPs need in Illinois each year?

 

Illinois QIDPs must complete a required number of approved continuing education credits (CEs) each year to remain compliant. CEs must be completed by June 30 and obtained from approved providers. Requirements focus on total credits rather than specific subject areas.

 

When is the Illinois QIDP CE deadline?

 

The annual deadline for Illinois QIDP CEs is June 30. CEs must be completed by this date to count toward that year’s requirement.

 

Are online courses approved for Illinois QIDP CEs?

 

Yes. Online and self-paced courses may be approved for Illinois QIDP CEs when offered by an approved provider. Online training allows QIDPs to complete CEs without travel or schedule disruption, providing convenient access to a wide range of approved courses.

 

How many Illinois QIDP CEs is the Fatal Five Case Manager course worth?

 

The Fatal Five Case Manager eLearn is approved for 7 Illinois QIDP CEs and focuses on preventable health risks and the role of QIDPs in early identification and coordination.

 

How many Illinois QIDP CEs does Virtual Person-Centered Thinking Training provide?

 

Virtual Person-Centered Thinking Training (vPCTT) is approved for 18 Illinois QIDP CEs, making it one of the higher-credit CE options available to Illinois QIDPs.

How many Illinois QIDP CEs is the Trauma-Informed Support course worth?

 

The Trauma-Informed Support course is approved for 3 Illinois QIDP CEUs and provides practical training on recognizing and responding to trauma among people with intellectual and developmental disabilities. The course focuses on understanding trauma’s impact on behavior, communication, and support needs while equipping QIDPs with strategies to strengthen person-centered and trauma-informed practices.

 

Can I complete most of my Illinois QIDP CEs through one course?

 

In many cases, QIDPs can complete a large portion of their CEs through a single high-credit course, depending on employer guidelines. Courses like vPCT are often used as a primary CE source.

 

Do these Illinois QIDP CE courses need to be completed live?

 

No. The Fatal Five for Case Managers eLearn is fully online and self-paced, allowing you to complete it on your own schedule before the June 30 deadline. Some providers may also offer live webinars as an alternative to self-paced courses.

 

What CE topics are most relevant for Illinois QIDPs?

 

While topic areas are flexible, CEs often discuss current challenges and best practices in the field, and CEs focused on health risk awareness, person-centered practice, and interdisciplinary coordination are especially relevant to QIDP responsibilities.

 

How should Illinois QIDPs plan ahead for CEs?

 

Planning early allows QIDPs to focus on course relevance and quality rather than urgency. Completing CEs earlier in the year reduces stress and allows time to apply learning in practice. It also provides ample opportunity to thoroughly review all course materials, including registration links, certificates, and event-related documents, ensuring participants receive all necessary resources and credentials.

 

Where can Illinois QIDPs find approved CE opportunities?

 

Approved CE opportunities are available through recognized training providers, and many agencies and organizations offer specialized services and program options for QIDPs, offering role-specific education aligned with Illinois expectations. Reviewing credit values and learning objectives can help QIDPs select appropriate training.

 

A New Era for Person-Centered Thinking Training: Bringing the Full TLC Experience Online

For decades, person-centered thinking (PCT) training has been a cornerstone of high-quality services and supports for people with intellectual and developmental disabilities (IDD) and older adults. Rooted in values of dignity, choice, autonomy, and community inclusion, PCT is not a “nice-to-have”—it is foundational to ethical, effective support systems.

Yet despite its importance, access to comprehensive, high-fidelity PCT training has long been limited by practical realities: multi-day in-person sessions, travel costs, staffing shortages, and scheduling constraints that make participation difficult for many organizations.

That reality is now changing.

Through a new partnership between IntellectAbility and Support Development Associates (SDA), the full The Learning Community for Person-Centered Practices (TLCPCP) curriculum is now available in an interactive, fully online format—without compromising depth, integrity, or instructional quality. This interactive training can be accessed from any location, removing previous barriers and making it easier for agencies and organizations to participate.

This initiative is the result of a collaborative effort between partners, with the curriculum developed jointly by IntellectAbility and Support Development Associates to ensure the highest standards in person-centered thinking training.

 

Introduction to Person-Centered Practices

 

Person-centered practices are at the heart of delivering high-quality support to people with intellectual and developmental disabilities (IDD) and those who are aging. These practices are rooted in the belief that every person deserves to have their unique needs, preferences, and aspirations recognized and respected. By focusing on the person, person-centered thinking skills empower people to gain positive control over their own lives, leading to more meaningful outcomes and a higher quality of life.

For direct support professionals, person-centered thinking training is essential. It equips them with the tools and understanding needed to put the person at the center of every decision, ensuring that services are tailored to each person’s strengths, goals, and values. This approach not only enhances the effectiveness of support but also fosters a culture of dignity, respect, and autonomy within organizations.

The Learning Community for Person-Centered Practices (TLCPCP) has long been a leader in developing and sharing best practices for person-centered training. Their comprehensive curriculum, along with the expertise of Support Development Associates (SDA), provides organizations with the resources and guidance necessary to implement person-centered thinking skills at every level. These training programs help staff develop the ability to listen deeply, communicate effectively, and support people in making informed choices about their own support and life direction.

Person-centered planning is a cornerstone of these practices. It involves working collaboratively with people to identify their strengths, needs, and dreams, and then developing support strategies that help them achieve their personal goals. This process recognizes the right of people with IDD and mental health conditions to lead self-directed lives, and it ensures that their voices are heard and valued in every aspect of service delivery.

In the context of aging and developmental disabilities, person-centered practices are especially important. They help people manage challenges, build on their abilities, and participate fully in their communities. By prioritizing person-centered thinking, organizations can create environments where the people are supported, and their families and support teams work together to promote health, well-being, and positive outcomes.

Ultimately, the importance of person-centered practices cannot be overstated. When organizations invest in person-centered training and foster a culture of centered thinking, they not only improve service quality but also help people with IDD and mental health conditions lead fulfilling, self-determined lives. This commitment to person-centered support benefits not only the persons served but also their families, colleagues, and the broader community.

 

Decades of Expertise, Reimagined for Today’s Workforce

 

This collaboration represents decades of combined experience in person-centered practices, planning, and training. Support Development Associates has long been recognized for its leadership in TLCPCP-based instruction, while IntellectAbility brings deep expertise in translating complex, evidence-informed content into scalable, accessible eLearning experiences.

Together, the organizations have accomplished something that once seemed unlikely: converting the entire traditional The Learning Center training model into a comprehensive online experience that preserves the heart of person-centered thinking while expanding its reach. The curriculum is presented by professional trainers who bring deep insights from years of experience in person-centered practices, ensuring that learners benefit from expert knowledge and practical lessons.

Rather than offering a condensed or “lighter” version of the curriculum, these courses deliver the full TLCPCP framework—now supported by interactive technology, reflective exercises, and learning tools that meet professionals where they are.

 

Two Distinct Courses, Designed for Different Needs

 

A key feature of this launch is the intentional development of two separate courses, each tailored to the unique realities of different populations:

• Person-Centered Thinking for IDD
• Person-Centered Thinking for Aging

Each course is structured as a comprehensive class designed to engage participants in practical learning experiences.

While the foundational principles of PCT remain consistent, best practices differ when supporting people with IDD versus older adults. These courses recognize those distinctions and provide targeted guidance that aligns with real-world service delivery across the lifespan.

This separation ensures learners receive relevant, applicable training—rather than a one-size-fits-all approach. Any member of an organization or team can enroll and benefit from these courses.

 

From Skepticism to Confidence: Why Online Works Now

 

For many seasoned trainers, the idea of delivering true PCT instruction online once felt unrealistic.

“I’m cautious about anything claiming to ‘transform’ training—because I’ve seen lots of approaches over the years that have not been as effective as hoped,” said Tanya Richmond, a TLCPCP PCT Mentor Trainer with over 20 years of experience. “If you’d told me even a few years ago we’d be delivering PCT entirely online, I would’ve had serious doubts.”

What changed? Technology.

Recent advances, including AI-enhanced learning tools, have made it possible to create an experience that is not only interactive and flexible but in many ways more effective than traditional live instruction.

“This platform truly impressed me,” Richmond continued. “It engages learners instantly and brings clarity, flexibility, and depth in a way that’s not only comparable to live instruction, but in many respects surpasses it. I never thought I’d say this, but online might just be the best classroom we’ve ever had!”

To gain the full benefit and ensure proficiency, participants must complete all modules, which helps maintain a strong focus on person-centered principles throughout the training.

 

Removing Barriers Without Lowering the Bar

 

Historically, accessing high-quality PCT training required organizations to navigate travel logistics, staff coverage challenges, and significant time commitments. These barriers often led to fewer staff being trained, inconsistent implementation, or delayed adoption of person-centered practices.

The new eLearning format removes those obstacles.

Learners can now engage with the full TLC curriculum from anywhere, on a schedule that fits their role and responsibilities—without sacrificing rigor or authenticity. Management staff can also benefit from this training, gaining the management skills needed to better lead and support their teams in implementing person-centered practices. This expanded access allows organizations across states, markets, and service systems to equip their workforce with the skills needed to support meaningful, self-directed lives.

“This is a major step forward for person-centered supports,” said Dr. Craig Escudé, President of IntellectAbility. “For years, organizations have struggled to provide consistent PCT training due to staffing, travel, and scheduling barriers. This new format removes those obstacles and delivers the same depth of learning, sometimes even more effectively than traditional multi-day live sessions.”

 

A Scalable Solution for Systems Nationwide

 

Early adopters across multiple markets—including state agencies and large organizations—have already expressed enthusiasm for the scalability and innovation behind these courses. Councils play a key role in guiding and accrediting person-centered training initiatives, ensuring that best practices are upheld across organizations. By making high-fidelity PCT training accessible at scale, this partnership supports system-wide consistency while honoring the personalized nature of person-centered practices.

As service systems continue to evolve, access to meaningful, practical training remains essential—not just for compliance, but for truly supporting people to live lives of their own choosing in their communities. This approach serves the unique needs of clients by prioritizing their preferences and well-being, and involving them as active decision-makers in their own support.

 

Looking Ahead

 

Person-centered thinking has always been about listening deeply, adapting thoughtfully, and removing barriers that limit opportunity. The training incorporates principles from psychology and addresses the needs of people with mental illness, ensuring that supporters are equipped to meet the diverse needs of vulnerable populations. Bringing the full TLC experience into an online learning environment reflects those same values—applied to workforce development itself.

With these new courses, PCT training is no longer constrained by geography or logistics. It is available to virtually anyone committed to supporting people with IDD and older adults with dignity, respect, and intention. The courses are recognized by or developed in collaboration with leading university programs in person-centered practices, further enhancing their credibility and impact.

More information on these courses will be available on April 1st, 2026.

Additional Resources:

• Person-Centered Thinking (PCT) Overview
  Learn what person-centered thinking is, how it supports people with IDD and older adults, and why PCT is foundational to ethical, effective service delivery across disability and aging systems.
• Free IDD Perspectives Webinars
  Access on-demand and upcoming webinars focused on person-centered practices, health equity, aging, and system-level support for people with IDD—led by nationally recognized experts.
• Online Person-Centered Training Through the IntellectAbility Academy
  Explore self-paced eLearning courses designed to strengthen person-centered practices, improve health and safety outcomes, and support professional development in IDD and aging services.

Why Person-Centered Thinking Matters in 2026

In a field shaped by shifting regulations, workforce shortages, evolving clinical knowledge, and growing pressure to do more with less, it can be tempting to treat person-centered thinking as a philosophy we have already mastered. It appears in mission statements. It shows up in policies and audits. It is referenced in service plans and compliance reviews.

And yet, person-centered thinking still matters, perhaps now more than ever, especially for people with intellectual and developmental disabilities (IDD) who continue to navigate systems that too often prioritize processes over people.

Not because it is new. Not because it is trendy. But because it is unfinished work.

As systems grow more complex and services become more standardized, the greatest risk is not forgetting what person-centered thinking is. The real risk is forgetting why it exists.

 

Person-Centered Thinking Is Not a Checklist

 

At its core, person-centered thinking was never meant to be a static framework or a box to check. It was designed to ensure that people with IDD are seen first as people—with histories, preferences, strengths, and goals that extend far beyond any service model. It was designed as a way of seeing—an intentional lens that centers people as whole, complex, and evolving human beings rather than as diagnoses, placements, or program slots.

Over time, many systems have translated person-centered thinking into documentation requirements:

• Does the plan reflect preferences?
• Is choice represented?
• Were goals identified?

Structure has value, but person-centered thinking loses its power when it becomes transactional. It is not proven by the presence of certain words on a page. It is revealed through everyday decisions, relationships, and responses, especially when circumstances are difficult or resources are limited.

Developing person-centered thinking skills is an ongoing process for both the person and the teams. Fostering these skills helps organizations build a sustainable culture of person-centered practices, ensuring continuous growth and improvement in the quality of support provided.

 

Why Person-Centered Thinking Still Matters Right Now

 

The realities facing disability service systems are anything but simple.

Providers are navigating high staff turnover and workforce fatigue. Case managers are balancing overwhelming caseloads while coordinating across increasingly complex systems. Supporters are being asked to manage greater needs with fewer resources and less time.

At the same time, people with IDD are expressing clearer expectations around autonomy, dignity, being heard, and having real influence over decisions that shape their daily lives. For those seeking to learn more, there are webinars featuring insights into IDD health and support offered by national experts.

In this environment, person-centered thinking provides grounding. It can assist teams and people in making ethical decisions and navigating complex service systems by offering a framework that supports thoughtful, values-driven choices.

It reminds teams that efficiency should never come at the cost of humanity. It reinforces that safety and dignity are not competing priorities. It affirms that listening is not a luxury. It is essential to ethical support.

When stress rises, systems often default to control. Person-centered thinking asks a harder, more reflective question:

Whose needs are being met by this decision, and whose voice might be missing?

 

Person-Centered Thinking Lives in Relationships, Not Roles

 

One of the most overlooked truths about person-centered thinking is that it does not belong to any single role or discipline.

It is not owned by service coordinators. It is not delegated solely to direct support professionals. It is not confined to leadership or clinical teams.

Person-centered thinking exists in the space between people and directly shapes how people with IDD experience support, safety, and belonging within service systems. The quality of the relationship between people with IDD and their supporters is central to building trust and achieving positive outcomes. Person-centered thinking also encourages the person to lead in their own support and decision-making, empowering them to make choices that reflect their preferences and needs.

It shows up in how questions are asked—or avoided, in whether time is taken to explain rather than move on, in whether someone is labeled as noncompliant or understood as communicating something meaningful.

When teams practice person-centered thinking consistently, culture begins to shift. For this shift to occur, all parties must actively engage in the process, ensuring everyone’s voice is heard and valued. People stop asking, “Is this allowed?” and start asking, “Is this respectful?” The difference may seem subtle, but the outcomes are not.

 

Beyond Choice: Meaning, Safety, and Growth

 

Person-centered thinking is often reduced to the concept of choice alone. For people with IDD, however, true person-centered thinking goes beyond surface-level options and into meaningful participation, understanding, and shared decision-making. While choice is critical, it is not sufficient on its own.

Authentic person-centered practice balances:

• What matters to a person
• What matters for a person
• What supports safety
• What allows learning, growth, and dignity

Recognizing and valuing eachpersonl’s contributions is essential, as it empowers people to bring their unique strengths and perspectives to the process and the broader community.

This balance requires reflection, communication, and shared responsibility. Person-centered thinking helps each person discover their own needs and solutions, fostering self-exploration and personal growth. It asks teams to move beyond either/or thinking and navigate nuance—recognizing that honoring a person’s voice does not mean ignoring risk, and supporting safety does not mean removing agency.

When done well, person-centered thinking strengthens service systems. It builds trust, improves outcomes, and supports more sustainable relationships between people and the systems meant to serve them. Through this approach, people gain autonomy, confidence, and a deeper self-understanding.

 

A Commitment That Must Be Renewed

 

Person-centered thinking is not something organizations achieve once and move on from. It is a commitment that must be renewed—day after day, decision after decision. The importance of continuous reflection and learning cannot be overstated for sustaining person-centered practices.

It requires ongoing conversation. It requires a willingness to challenge long-standing assumptions. It requires humility—the understanding that no system, no professional, and no plan gets it perfectly right.

In 2026, the question is no longer whether person-centered thinking matters.

The question is whether we are willing to keep doing the work when it is uncomfortable, time-consuming, or inconvenient.

Because for people with IDD—the very reason these systems exist—being seen, heard, and respected is never optional.

Person-centered thinking remains central to the development of meaningful, ethical, and sustainable services. As the field looks ahead, renewed focus and shared language will continue to shape what comes next, but it is the long-term commitment to these principles that ensures a sustained impact for people and organizations alike.

A new IntellectAbility Academy course focused on person-centered thinking launches April 1. More information will be released soon!

Additional Resources:

• Learn more about Person-Centered Thinking Training from IntellectAbility.
• Download the Person-Centered Thinking Brochure

Announcing a New IntellectAbility Academy Course: Trauma-Informed Support for People with IDD

 

Supporting people with intellectual and developmental disabilities (IDD) requires more than understanding diagnoses or following support plans. It requires recognizing the lived experiences that shape behavior, identity, and relationships—especially experiences of trauma. That is why the IntellectAbility Academy is introducing a new self-paced training designed specifically for frontline supporters: the Trauma-Informed Support eLearn Course.

This five-module course offers a practical and accessible introduction to trauma-informed support through an IDD-specific lens. It is designed for direct support professionals, clinicians, supervisors, and anyone who supports people with intellectual and developmental disabilities in their daily lives. Whether learners are new to trauma-informed practice or looking to deepen their understanding, this course offers tools they can apply immediately in real-world settings.

 

Why Trauma-Informed Support Matters in Intellectual and Developmental Disabilities (IDD) Services

 

People with IDD experience trauma at disproportionately high rates, often from sources that go unrecognized or minimized. Frequent changes in supporters, loss of autonomy, medical procedures, and systemic barriers can all leave lasting impacts. Exposure to trauma is especially prevalent among people with IDD. Sources of trauma can include serious medical interventions, bullying, loss, abuse, neglect, and trauma involving a family member. In fact, Studies show that people with IDD are 7 times more likely to experience sexual abuse than people without disabilities.

Trauma symptoms may manifest as anxiety, withdrawal, aggression, or changes in an individual’s behavior. There are important differences in how trauma responses present among people with IDD, making it essential to recognize and address these unique patterns.

When trauma is not understood, its effects may be misinterpreted as “behavior,” leading to responses that unintentionally cause further harm. This course reframes those moments. Through expert instruction and storytelling from Dr. Karyn Harvey, learners explore how trauma affects the brain, influences behavior, and can contribute to post-traumatic stress disorder (PTSD) in people with IDD. More importantly, they learn how to respond in ways that promote safety, healing, and a strong, positive sense of identity.

 

What Learners Will Gain

 

The Trauma-Informed Support eLearn Course is structured into five engaging modules that combine research, lived experience, and practical application.

Learners will:

• Understand the difference between Big “T” Trauma and Little “t” Trauma and how both affect people with IDD
• Recognize unique sources of trauma common in the lives of people with IDD
• Learn how trauma shapes the smart, emotional, and mechanical parts of the brain
• Identify trauma-based responses such as fight, flight, freeze, and fawn—and distinguish them from intentional behavior
• Recognize how PTSD may present differently in people with IDD
• Apply strategies that reduce triggers, strengthen relationships, and support long-term healing

The course also draws from positive psychology, grief counseling, and relationship-based support to help learners move beyond crisis response and toward prevention, resilience, and well-being.

 

A Practical, Engaging Learning Experience

 

Like all IntellectAbility Academy courses, Trauma-Informed Support is built for busy professionals. The self-paced format allows learners to progress on their own schedule, with 24/7 access through IntellectAbility’s eLearning Platform (eLP). Interactive videos, visuals, animations, and illustrations bring complex concepts to life, while scenarios and knowledge checks reinforce learning.

The platform automatically tracks progress, monitors completion, and generates certificates, making it easy for organizations to meet oversight, quality, and regulatory requirements.

 

Inside the Five Modules

 

The course is organized to build understanding step by step—from awareness to application. Recent research over the past decade, including randomized controlled trials and systematic reviews, has informed the course’s evidence-based practices for supporting patients with IDD and mental illness.

 

Module 1: Unique Sources of Trauma in the Lives of People with IDD

Learners explore what trauma really means, identify common sources of trauma for people with IDD, and discover how adopting a trauma-informed lens can change everyday support.

 

Module 2: Trauma-Based Responses and Their Biological Basis

This module explains how trauma affects brain functioning and introduces the fight, flight, freeze, and fawn responses, helping supporters recognize when behavior is rooted in survival rather than choice.

 

Module 3: Symptoms and Manifestations of PTSD in People with IDD

Learners examine how PTSD may look different in people with IDD and how trauma can shape identity and behavior over time, including the presence of “hidden land mines” that trigger distress. PTSD symptoms can occur alongside other mental health disorders, such as bipolar disorder and generalized anxiety disorder, making it important to distinguish between these conditions. Trauma responses may also occur differently in people with IDD compared to the general population, and recognizing overlapping symptoms with other mental health disorders is essential for accurate assessment.

 

Module 4: Key Ingredients for Healing from Trauma for People with IDD

This module focuses on what healing requires—especially during critical periods across the lifespan—and provides strategies for building safety, connection, and positive identity. The trauma-informed support approach is emphasized as a key strategy for supporting people with IDD.

 

Module 5: Positive Practices for DSPs Supporting Individuals with Trauma:

The final module brings everything together with practical tools, including relationship-based approaches, grief counseling strategies, positive psychology techniques, and use of the Happiness Assessment in daily planning. The trauma-informed support approach is also integrated into practical applications for direct support professionals.

 

Part of a Larger Commitment to Quality Support

The Trauma-Informed Support eLearn Course reflects IntellectAbility Academy’s broader mission: equipping supporters with evidence-based, person-centered education that improves quality of life for people with IDD. By helping teams understand trauma and respond with compassion and skill, this course supports safer environments, stronger relationships, and more meaningful outcomes.

 

Click to learn more about IntellectAbility and the new Trauma-Informed Support eLearn Course.

 

Additional Resources:

• Explore IntellectAbility’s Academy and course offerings
• Learn more about Person-Centered Thinking Training
• Download the Trauma-Informed Support course overview. 

 

Person-Centered Thinking in Practice: Supporting Choice, Autonomy, and Dignity of Risk in IDD Services

Person-centered thinking has become a familiar phrase across disability services, yet many organizations still struggle to translate it into everyday practice. While most providers agree that people with intellectual and developmental disabilities (IDD) deserve autonomy, meaningful relationships, and full participation in community life, uncertainty often arises when those goals intersect with health, safety, and perceived risk. This highlights the importance of recognizing and prioritizing the critical role that fostering relationships plays in enhancing well-being, safety, and social inclusion for people with intellectual disabilities.

This tension—between protecting people and supporting real lives—was the focus of a recent IDD Perspectives discussion led by Jonathan Crumley and Dr. Craig Escudé. Their conversation highlighted a critical truth for disability service providers: person-centered support is not about eliminating risk, but about thoughtfully balancing safety and autonomy in ways that respect the person first. Providing appropriate support tailored to each person’s needs is essential, ensuring that assistance is personalized to promote independence and quality of life.

 

Why Person-Centered Support Still Feels Challenging

 

Despite decades of progress in community-based IDD services, many systems continue to operate from an institutional mindset. While large institutions have closed, the philosophies that shaped them—rigid routines, collective decision-making, and risk avoidance—often persist in smaller, community-based settings.

This history matters because it explains why person-centered planning can feel difficult in practice. When systems are designed primarily to manage liability, efficiency, and compliance, supporting personal choice can feel unsafe or unrealistic. As a result, people with IDD may live in the community without experiencing true community integration, autonomy, or meaningful relationships. These institutional barriers often result in limited access to social opportunities and healthcare resources, further restricting participation and inclusion for people with IDD.

The CMS Settings Rule was created, in part, to address this disconnect by reinforcing the right of people with IDD to live lives comparable to those without disabilities. Yet compliance alone does not guarantee person-centered outcomes.

 

When Disability Replaces the Person

 

A major barrier to person-centered thinking is what happens when disability becomes the primary lens through which support decisions are made. When the diagnosis overshadows the person, it becomes easier to justify restrictive practices—often in the name of safety.

This can include limiting relationships, controlling daily choices, or prioritizing what is “important for” the person over what is “important to” them. These practices are rarely rooted in ill intent. More often, they reflect systems that were never designed to support autonomy, independence, and informed decision-making. Respecting and incorporating the person’s wishes in all support decisions is essential to uphold dignity and self-determination.

Person-centered thinking challenges supporters to reconsider whose needs are truly being met—and whether safety has quietly replaced quality of life as the ultimate goal.

 

Understanding Intellectual Disabilities

 

Intellectual disabilities are defined by significant challenges in intellectual functioning and adaptive behavior, which can affect a person’s ability to learn, reason, and solve problems in daily life. These disabilities begin before the age of 18 and may result from a variety of causes, such as genetic conditions, brain injuries, or prenatal factors. For people with intellectual disabilities, everyday activities—like managing routines, making decisions, or building meaningful relationships—can require additional support and understanding.

Person centered thinking skills play a crucial role in supporting people with intellectual disabilities. By focusing on each person’s unique strengths, preferences, and aspirations, a centered thinking approach helps support providers move beyond limitations and see the whole person. This not only supports the development of practical problem solving skills but also fosters self determination and autonomy. When support staff actively listen and tailor their approach to the person’s wishes, they empower people with intellectual disabilities to participate more fully in their own lives and enjoy fulfilling relationships. Ultimately, person centered support is about recognizing each person’s potential and providing the right environment for them to thrive.

 

Person-Centered Thinking as a Practical Framework

 

One of the most persistent myths in disability services is that person-centered thinking is philosophical rather than operational. In reality, it is a structured framework that helps teams navigate complex support decisions responsibly.

At its foundation is discovery—understanding what is important to the person and why it matters to them. Without this step, support planning becomes reactive and generic rather than individualized.

From there, teams identify legitimate risks and barriers. This process does not ignore health and safety concerns; it acknowledges them openly while avoiding exaggerated assumptions. The focus shifts from “why this cannot happen” to “how this could happen safely.”

Education is the next essential component. Just as anyone would seek information before making major life decisions, people with IDD deserve access to education that supports informed choices, risk awareness, and personal growth.

Support is then negotiated rather than imposed. The person maintains control over their goals, while supporters collaborate on how to provide assistance that balances autonomy and protection. Effective communication is essential in this collaboration, ensuring that both supporters and people understand each other’s perspectives and needs. Documentation ensures transparency and continuity, while ongoing monitoring allows supports to evolve as circumstances change. Goal setting is a key part of person-centered planning, helping to create actionable steps toward achieving the person’s desired outcomes.

Practical strategies, such as using specific tools and methods, are vital for implementing person-centered thinking and ensuring that plans are both meaningful and actionable.

 

Supporting Relationships Through Person-Centered Practices

 

Few areas test person-centered support more than relationships. Romantic relationships, intimacy, and sexuality are often treated as exceptions rather than natural aspects of adulthood for people with IDD. Understanding and supporting physical intimacy is an important part of helping people build healthy and respectful relationships.

A person-centered approach reframes this assumption. Supporting relationships does not mean abandoning safeguards. It also means teaching about personal space, boundaries, and consent to ensure safety and respect. It means acknowledging that meaningful relationships require education, communication, and planning for everyone—regardless of disability. Supporting social relationships is essential for fostering inclusion and helping people develop interpersonal connections.

By applying person-centered practices, teams can support relationships in ways that respect dignity of risk while maintaining appropriate health and safety measures. This includes collaborative planning, clear communication strategies, and ongoing reflection about what is working and what needs adjustment. Creating a safe space allows people to express their feelings, concerns, and questions about relationships without fear of judgment. Open communication is key to building trust and identifying issues early through transparent conversations. Ongoing education for staff and people with IDD ensures everyone is equipped to understand rights, boundaries, and respectful support. Community involvement helps people build meaningful connections and reduce loneliness through participation in social groups and activities. Encouraging participation in various social settings promotes independence and helps develop friendships. An inclusive environment is fundamental to supporting relationship goals, providing access to education, and ensuring everyone can participate without stigma or discrimination.

When relationships are supported rather than restricted, people with IDD are more likely to experience belonging, self-determination, and improved quality of life.

 

Rethinking Dignity of Risk in IDD Services

 

Dignity of risk is often misunderstood as recklessness or unnecessary exposure to harm. In practice, it is neither. Dignity of risk recognizes that all meaningful life experiences involve some level of uncertainty—and that denying people those experiences can be more harmful than the risk itself. It is important to consider the potential consequences of each choice, weighing both the benefits and risks to inform better decision-making and ensure well-being.

Within person-centered support, dignity of risk is carefully managed through education, negotiated supports, and thorough documentation. It is not a single decision, but an ongoing process that evolves alongside the person’s goals and circumstances. Supporting people in making autonomous decisions is essential, as it respects their right to self-determination and aligns with best practices in supported decision making.

When organizations embrace dignity of risk responsibly, they strengthen both individual outcomes and system accountability. This approach helps enhance autonomy for people with intellectual and developmental disabilities, promoting greater independence and quality of life.

 

Why Person-Centered Support Requires Ongoing Commitment

 

Person-centered thinking is not a one-time initiative or training requirement. It is a sustained practice that requires continuous learning, reflection, and organizational support. As people grow, relationships change, and new challenges emerge, support strategies must adapt accordingly.

Staff and organizations must be actively working to foster autonomy and self-determination in people with intellectual and developmental disabilities. The goal of these efforts is to foster autonomy by promoting independence, providing decision-making opportunities, and respecting personal choices. Ongoing education is essential for staff to stay informed about best practices and to continuously improve the quality of support provided.

This is especially important in systems with staff turnover, where shared documentation and consistent frameworks ensure continuity of support. When person-centered practices are embedded into daily operations, they become less dependent on individual staff members and more resilient over time.

 

Moving Toward Truly Person-Centered Services

 

Supporting people with IDD to live full, self-directed lives requires more than good intentions. Supporting participation in their own communities is essential to ensure inclusion and belonging. The goal of person-centered support is to empower people with IDD to lead independent lives. Support strategies are designed to foster self determination, enabling people to make choices and control their own paths. The desired outcome is for people to become self determined, actively shaping their futures. Environmental factors, such as accessible settings and inclusive policies, significantly influence autonomy and participation. Staff and supporters play a pivotal role in advocating for rights and social inclusion. Peer mentoring and social engagement activities hold a vital role in building confidence and reducing loneliness. The concept of positive control is central, supporting self-direction and authority over one’s life. It is especially those who provide daily support that must be equipped with person-centered thinking skills. This approach often results in less effort required to update and implement service plans. Evidence-based approaches, such as social skills training and peer mentoring, represent an effective strategy for enhancing inclusion. Recognizing and valuing the IDD experience is crucial for understanding personal needs and aspirations. Families are integral partners in supporting autonomy, advocacy, and informed decision-making. Connecting people with IDD to community resources increases inclusion and supports autonomy. Participation in social outings, such as group events or community gatherings, exemplifies meaningful community involvement. Social activities provide opportunities for engagement and relationship-building. Community activities, including local events and online groups, further reinforce social inclusion. For example, a person may receive support during a medical appointment or a family member may assist with planning for social participation. Providing proper education tailored to individual needs helps address communication barriers and empowers people. This approach aligns with best practices in rights-based, person-centered support. Underpinning these strategies is self determination theory, which guides the promotion of autonomy and intrinsic motivation.

Person-centered thinking offers a practical pathway forward—one that balances safety and autonomy without sacrificing dignity. When disab ility service providers commit to this approach, they move beyond compliance and toward truly person-centered services that reflect the humanity of the people they support.

Additional Resources:

• Watch the full IDD Perspectives Tara Wants a Boyfriend: Strategies for Supporting Choice, Independence, and Safe Relationships.
• Explore upcoming IDD Perspectives webinars.
• Learn more about Person-Centered Thinking training.

 

Avoiding Preventable Death in People with IDD Using the HRST: A Review of the Latest Mortality Research 

For people with intellectual and developmental disabilities (IDD), health is never solely about lab values or medication lists. It is about whether someone can continue attending their day program, seeing friends, spending time with family, and doing what they enjoy.

It is also about whether the systems around them are capable of recognizing problems early enough to prevent avoidable crises and deaths.

In the webinar Avoiding Preventable Death in People with IDD Using the Health Risk Screening Tool (HRST), Dr. Craig Escudé and IntellectAbility Clinical Director and nurse, Daleigh Tallent, reviewed powerful new findings from the 2023 Georgia Department of Behavioral Health and Developmental Disabilities (DBHDD) annual mortality report and showed how the Health Risk Screening Tool (HRST®) can help teams respond to those findings in concrete, person-centered ways.

This blog recaps the key messages from that session. It connects the mortality data to everyday practice, showing how the HRST can help reduce preventable deaths and improve quality of life for people with IDD.

 

Understanding Health Disparities for People with IDD 

If you work in IDD services, you probably do not need to be convinced that health disparities exist. People with IDD visit emergency departments more often than people without disabilities. When they are hospitalized, they have a higher risk of dying. Research shows they are roughly twice as likely to die from preventable causes (The Center for Inclusive Health).

Many of these causes are related to what is often called the “Fatal Five”: aspiration, seizures, constipation and bowel obstruction, dehydration, and sepsis, along with severe complications of gastroesophageal reflux disease (GERD).

These outcomes are not inevitable. They reflect preventable differences in access, recognition, follow-up, and training.

Communication challenges are a significant factor. Many people with IDD cannot easily describe their pain, discomfort, or subtle changes in how they feel. Early signs of illness, such as a new change in behavior, a loss of interest in activities, small changes in appetite, or a slight shift in bowel patterns, can be overlooked or dismissed as “just how the person is.” Early detection and assessment of health concerns is critical to identifying health risks before they become serious problems for people with IDD.

On top of that, there is a widespread lack of training on IDD health for both clinicians and supporters. Most physicians receive little or no formal education about providing healthcare to people with IDD. Many case managers, direct support professionals, family supporters, and other supporters are not given the tools they need to recognize early warning signs of health destabilization. Add to this the reality of limited access to knowledgeable clinicians—especially in rural areas—and the constant pressure of budget constraints, and you have conditions that can easily amplify existing disparities.

Reduced access to appropriate support and resources further contributes to health disparities among people with IDD. Improving the availability and quality of healthcare services is a key modifiable factor in reducing preventable deaths and promoting health equity for this population.

What Dr. Escudé emphasized is that, even in the face of limited resources, we cannot allow people with IDD to decline simply because systems are complicated or funding is tight. We cannot ignore our responsibility to ensure that each person’s health is actively monitored, that risks are recognized, and that action is taken. That is where a structured, evidence-based tool like the HRST becomes essential.

 

What the Health Risk Screening Tool (HRST®) Does 

The Health Risk Screening Tool (HRST) is a HIPAA-compliant, web-based screening tool developed to identify health risks in people with IDD and other at-risk populations, including people who are aging, people with physical disabilities, and people with traumatic brain injury. Rather than requiring new information, the HRST organizes and interprets data that teams are already collecting into a clear picture of health risks and necessary follow-up.

At its core, the HRST is a 22-item rating scale that examines several domains: functional status, behavior, clinical issues affecting daily life, physiological risk areas linked to the Fatal Five and other conditions, injuries and falls, and utilization of healthcare services, including hospitalizations and emergency room visits.

Each item is scored using straightforward yes/no questions and objective criteria. The tool does not allow users to simply “pick a number” based on a hunch. Instead, it calculates scores based on the answers entered and then assigns an overall Health Care Level from 1 through 6. These Health Care Levels categorize people based on their health risks to facilitate early detection and intervention. The HRST uses these categories as a classification scheme to group people according to their risk level, supporting targeted analysis and response.

Health Care Levels 1 and 2 are considered lower risk, Levels 3 and 4 represent moderate risk, and Levels 5 and 6 indicate higher risk. Once the rating is complete, the HRST generates a set of person-specific service considerations and training considerations. These are not generic suggestions. They are targeted recommendations that say, in effect, “Based on this person’s patterns of risk, here are the concrete steps the team should consider next,” and “Here are the topics supporters need training on to recognize and respond to these risks.”

Years of research, including peer-reviewed studies published in journals such as the Journal of Nursing Measurement, have shown that the HRST can predict mortality risk based on Health Care Level. That means the Health Care Level is not just an administrative category. It is a meaningful indicator of a person’s likelihood of death in the coming period, assuming no changes occur. This makes the HRST a powerful tool for prioritizing attention, shaping proactive interventions, and focusing limited resources where they are most needed.

By identifying health risks and guiding interventions, the HRST supports health promotion for people with intellectual and developmental disabilities.

 

Inside the 2023 Georgia DBHDD Mortality Report 

The Georgia Department of Behavioral Health and Developmental Disabilities has produced an annual mortality report for adults with IDD for ten years. The 2023 report, which was highlighted in the webinar, examined a population of 13,916 adults with IDD who were at least 18 years old, had a primary diagnosis of an intellectual or developmental disability, and were Medicaid waiver recipients. Medicaid data was used to analyze mortality rates and health outcomes among this population, providing valuable insights into health disparities and trends.

Importantly, Georgia uses the HRST for people receiving both residential and non-residential supports. That reflects a critical belief: health risks do not disappear or suddenly change simply because someone lives in a different type of setting.

In calendar year 2023, there were 237 deaths in this population. That corresponds to a crude mortality rate of approximately 17 deaths per 1,000 people, or about 1.7 percent. Compared to US adults in the general population, adults with IDD experience higher mortality rates and unique health disparities. When the data were analyzed by HRST Health Care Level, a very clear pattern emerged. As the Health Care Level increased, the risk of death also increased. There was a marked jump at Health Care Level 4, which previous years of data have already associated with the highest risk of unexpected death.

When analysts looked back over a full decade of mortality reports, the same pattern held steady year after year. As the Health Care Level climbed from 1 through 6, mortality rates consistently rose. This stability over time supports the reliability of the HRST as a predictor of health risk and mortality, and it reinforces the importance of monitoring Health Care Levels and responding promptly when they change.

 

Key Findings: Risk Factors, Age, and Causes of Death 

Daleigh Tallent highlighted several specific findings from the 2023 report that have direct implications for daily practice. One of the most important is that a two-point increase in Health Care Level is associated with a statistically significant increase in mortality risk. If a person’s Health Care Level jumps from, for example, 2 to 4, or from 3 to 5 within a year, that change should be treated as a serious warning sign. In reality, even a one-level increase should prompt a careful review, because it moves the person further along the continuum toward higher risk.

The report also identified certain individual HRST items that are strongly associated with mortality. Item V, which looks at hospital admissions within the past 12 months, is one of them. For each unit increase in the score for hospital admissions, the probability of mortality rises by roughly 36 percent. This connects directly with what Dr. Escudé shared earlier: when people with IDD are hospitalized, they carry a higher risk of dying in the hospital than the general population.

Item E, which captures clinical issues affecting daily life, is another important predictor. This item measures how often physical, mental, or behavioral health conditions prevent a person from engaging in their preferred activities. As the number of “affected days” goes up—days spent in the hospital, in healthcare appointments, or otherwise restricted by health issues—the score increases. For each score increase in Item E, the probability of mortality increases by about 29 percent. This suggests that when someone’s health increasingly interferes with their everyday routines, it should be interpreted as a sign of health instability that warrants active follow-up.

Age remains a factor, as it is in the general population. The study found that increasing age was significantly associated with mortality and that the highest risk of death was seen in the age groups 55 to 64 and 65 to 74.

However, the report also noted something unique about people with IDD: four of the leading causes of death in this group were not the same as those in the general population.

Conditions such as sepsis, pneumonia, and aspiration pneumonia appeared prominently. In many cases, death certificates did not specify whether pneumonia was community-acquired or aspiration-related, which likely means some aspiration pneumonia cases were hidden under a general pneumonia label. Sepsis and aspiration pneumonia are both Fatal Five conditions. Their prominence in the mortality data underscores the importance of training supporters to recognize early signs of infection, aspiration risk, and respiratory compromise.

 

Turning The HRST Data into Proactive Action 

It is one thing to have data and another to know how to use it. The most powerful aspect of the HRST is not just the final Health Care Level number, but the way it directs teams toward specific actions and training priorities.

The first and most direct way to use HRST data is to take service considerations and training considerations seriously. For each person, the HRST generates specific recommendations based on their particular pattern of scores. These recommendations should not be seen as optional extras. They are designed to guide the work of the entire team: the person receiving services, family members, case managers, support coordinators, direct support professionals, nurses, day program staff, residential staff, and clinicians.

For example, consider someone who scores a 4 on the self-abuse item because they require one-to-one supervision due to self-injurious behaviors. The HRST might prompt the team to look for possible medical causes, especially if the behavior is new, worsening, or has been present for a long time without an underlying cause. Instead of accepting “this is just how they are,” the team is encouraged to ask, “What might be underneath this?” The related training consideration might direct the organization to train supporters on recognizing the signs of emergencies associated with self-injury and what to do in those situations. When teams actively use these service and training considerations as prompts for action, the HRST becomes a practical tool for prevention, not just documentation.

The second way to turn data into action is to pair HRST outputs with IntellectAbility’s clinical briefs. These short, focused documents help explain common risk areas in people with IDD and outline what clinicians should consider when evaluating them.

If a service consideration recommends ruling out medical causes for changes in behavior, a clinical brief on “medical causes of behaviors in people with IDD” can be shared with the primary care provider, neurologist, or psychiatrist. This brief provides context on communication differences, pain expression, sensory issues, and common underlying conditions, helping clinicians understand why a more thorough evaluation is necessary. In this way, HRST data can serve as a bridge between community-based supports and healthcare providers.

 

Integrating the HRST with Technology and Reporting 

Modern support systems rely heavily on technology, and the HRST is designed to fit into that landscape. One example highlighted in the webinar is the interface between the HRST and StationMD, a telehealth service that focuses on people with IDD.

Through this partnership, StationMD clinicians can access a person’s HRST record during a telehealth visit. This gives them immediate insight into critical information such as whether the person uses a G-tube, has a known aspiration risk, or has a history of frequent seizures or hospitalizations. For the clinician, this context can shape vital decisions, such as the type of medication to prescribe and the form in which it should be administered.

The HRST can also connect with eMAR systems, like Impruvon Health, to import diagnoses and medications directly, reducing duplicate data entry and improving accuracy. In addition, IntellectAbility can work with organizations and states to connect the HRST to existing electronic systems, allowing key risk data to follow the person rather than being confined to a single platform.

Another powerful feature of the HRST is its reporting capabilities. The system includes more than 90 standard reports, as well as a flexible custom report builder. These reports can be used to identify patterns and inform decisions at the person, agency, or state level.

For example, a nurse or quality team can pull a report of everyone with seizure-related risk scores in the higher ranges and check whether seizure plans, monitoring, and staff training are in place and up to date. They can generate lists of people taking antiepileptic or psychotropic medications to ensure that monitoring for side effects, including tardive dyskinesia, is occurring as recommended. They can also build targeted reports focused on Fatal Five-related risk items, identifying who is most at risk for aspiration, constipation, dehydration, or sepsis.

Perhaps most importantly, reports can track changes in Health Care Levels over time.

If someone’s Health Care Level has increased by one or two points in the last year, that is a clear signal that their risk has grown and that the team needs to respond. Conversely, decreases in Health Care Level over time suggest that current supports and interventions are working and should be sustained and strengthened.

Tallent mentioned that she would want to run a report of everyone at Health Care Level 4, the level associated with the highest risk of unexpected death, to ensure that these people are receiving closer monitoring and proactive interventions. These are the people who may sound excited on Friday about weekend plans and then end up in a medical crisis before Monday if early warning signs go unrecognized.

 

Correcting Misjudged Risk: Insights from Ohio

In partnership with the Ohio Department of Developmental Disabilities, IntellectAbility conducted a pilot study in which supporters were asked to estimate a person’s Health Care Level before seeing the HRST results. Their estimates were then compared to the actual Health Care Levels generated by the tool.

The results showed that supporters often misjudged risk in both directions. In some cases, they overestimated the risk of people they believed to be more medically fragile than they truly were. In other cases, they underestimated the risk of people whose true Health Care Levels turned out to be higher than they expected. This matters because these judgments influence how support teams prioritize time, attention, and resources. When risk is underestimated, serious health issues may be overlooked or dismissed until they become emergencies.

In the same pilot, 79% of supporters agreed that the HRST identified risk factors they had previously been unaware of. These were real, actionable risk factors that simply had not been on their radar. The HRST not only uncovered those risks but also offered immediate, concrete guidance on the next steps through the service and training considerations. This finding reinforces the value of using an objective, evidence-based tool rather than relying solely on gut feeling or familiarity with the person.

 

Real-World Impact: What Happens When HRST is Used Well 

The webinar concluded with real-world examples of systems and agencies that have achieved measurable results from intentionally and consistently using the HRST. Over time, organizations have reported reductions in unnecessary medications, decreases in average Health Care Levels, fewer falls, and fewer emergency department or urgent care visits.

Lower Health Care Levels are more than numbers on a dashboard—they represent added years of life and better daily experiences for the people being supported.

One example described a state that utilized HRST reports to identify patterns. They discovered a group of people who had similar behaviors, such as hand mouthing and pica, and many of them had service considerations recommending a gastroenterology consult to evaluate for GERD. The state followed those recommendations, arranged GI consultations, and found that many of those people did in fact have GERD.

After treatment began, their discomfort decreased, their hand mouthing and pica behaviors declined, and their agitation around mealtimes improved. With behaviors improving, teams were able to reduce or eliminate certain psychotropic medications, which in turn lowered the risk of side effects and polypharmacy.

For each of those people, the impact was deeply personal: less pain, more comfort, and a better quality of daily life. For providers and funders, these changes also meant fewer crises, fewer expensive medical interventions, and more efficient use of limited resources. The HRST served as the starting point that made those changes possible.

 

Moving Toward Prevention and Person-Centered Health 

The ten years of mortality data from Georgia make one truth very clear: with the right tools, we can see risk coming. Higher Health Care Levels consistently predict higher mortality risk. Increases in Health Care Level, more frequent hospital admissions, and more days where health interferes with daily life are all early warning signs. The leading causes of death for people with IDD, particularly Fatal Five-related conditions such as sepsis and aspiration pneumonia, are often preventable with timely recognition and action.

Dr. Escudé and Tallent invite the field to embrace a culture shift. Instead of saying, “This is just how it is in IDD,” they encourage teams to ask, “What is really going on, and what can we do sooner?”

Instead of remaining stuck in a pattern of reacting to emergencies, they encourage organizations to use HRST data and mortality findings to design systems of proactive, person-centered support. Instead of accepting health disparities as inevitable, they challenge us to use tools like the HRST, along with training and technology, to close those gaps.

For current HRST users, the next step may be to explore reporting options more deeply, to build a process for reviewing service and training considerations, or to partner with IntellectAbility staff to help interpret data and plan interventions. For states and organizations not yet utilizing the HRST, this is an opportunity to consider how a validated risk screening tool could fit into existing quality improvement, case management, and health monitoring efforts.

At the heart of all this, as Tallent reminded webinar attendees, each data point in a mortality report represents a real person—someone with relationships, routines, dreams, and a life story. Using the HRST well is one concrete way to honor those lives by doing everything possible to avoid preventable deaths and to replace risk with health and wellness for people with IDD.

 

Additional Resources: 

• Learn more about the HRST with our downloadable brochure

• Explore upcoming and on-demand free webinars in our IDD Perspectives series

• Watch the full webinar, Avoiding Preventable Death in People with IDD Using the Health Risk Screening Tool (HRST), here.

 

 

Unlocking Support: A First-of-Its-Kind Free Course on Substance Use Disorder and IDD

For years, supporters, clinicians, families, and service systems have struggled with a gap no one could ignore: a lack of training that speaks directly to how substance-use disorders (SUD) affect people with intellectual and developmental disabilities (IDD).

Compared to the general population, people with IDD have lower rates of illicit drug use, but the risk of substance-related problems remains significant for those who do use.

While research, advocacy, and clinical experience have all pointed to the need for tailored education, research suggests there has never been a structured pathway to help providers understand how SUD presents differently in people with IDD, and how to support them in ways that honor dignity, safety, and person-centered practice.

That changes today.

A new free course developed by the Center for Implementation and Evaluation of Education Systems (CIEES) and the Virginia Department of Behavioral Health and Developmental Services—with IntellectAbility proudly serving as source experts—is the first training of its kind in the nation dedicated entirely to the intersection of IDD and substance-use disorders.

This project gives supporters something they have never had before: accessible, evidence-informed, person-centered guidance explicitly designed for adults with IDD who may be experiencing or are at risk of experiencing substance abuse disorder. People with IDD who do use substances are at elevated risk for problematic outcomes. And because the full course is entirely free, agencies, case managers, DSPs, clinicians, and families can benefit immediately without cost barriers.

Why Substance-Use Education for Intellectual and Developmental Disabilities (IDD) Supports Has Been Missing

What makes this series so groundbreaking is not just its topic but its depth. The issue of substance abuse among people with IDD has not been widely recognized, leading to significant gaps in prevention education and treatment engagement. The unique challenges at the intersection of IDD and substance abuse require specialized approaches that address both cognitive and behavioral complexities.

Historically, the intersection of IDD and SUD has been overlooked, often because symptoms can present differently, risk factors may be misunderstood, and many training programs lack content specifically tailored to people with IDD. Substance abusers with IDD face specific barriers to recognition and treatment, including misdiagnosis and limited access to appropriate resources. Addressing IDD and substance abuse presents unique challenges due to these misunderstood risk factors and the need for adapted intervention strategies.

Supporters, those closest to the person, have long expressed uncertainty about how to identify substance abuse disorder in a way that respects autonomy while protecting health and safety. Substance abuse problems in this population are often overlooked due to cognitive and behavioral challenges, making early identification and intervention even more critical. This course fills that long-standing gap by creating a shared foundation of knowledge that is both clinically sound and accessible.

Inside the Course: What Learners Will Discover 

The course begins by grounding learners in the fundamentals: What substance-use disorders are, how they manifest, and why standard approaches to treatment and recognition may not adequately reflect the experiences of people with IDD. The course also examines the clinical characteristics of substance use disorders in people with IDD, including cognitive, adaptive, and behavioral traits that influence diagnosis and intervention. Exposure to substances can lead to patterns of addictive behaviors in people with IDD, making it crucial to understand the unique challenges they face.

From there, the modules examine how substance abuse disorder affects the person’s life as a whole, including relationships, social roles, identity, and long-term health outcomes. Learners will explore various substance abuse disorders and their impact on people with IDD, with particular attention to the prevalence and impact of drug use and alcohol abuse in this population. Research often focuses on certain substances, such as alcohol and cocaine, when examining substance use among people with IDD. The progression of the modules is purposeful, allowing each concept to build upon the last, so that supporters gain a comprehensive and nuanced understanding of SUD within the IDD population, including different treatment options tailored for this group.

How Trauma, Stigma, and Bias Affect SUD in People with Intellectual and Developmental Disabilities

A powerful component of the course is its honest reflection on trauma, stigma, and systemic bias. Many people with IDD also experience co-occurring mental illness, which can complicate diagnosis and treatment.

Many people with IDD have experienced histories of trauma, social exclusion, or learned helplessness, all of which can increase vulnerability. Additionally, stigma, both around disability and substance use, can prevent people from accessing appropriate treatment or even being recognized as needing help. Addressing both abuse and mental health issues in this population presents unique challenges that require specialized understanding.

The course addresses these issues directly, providing supporters with the language and insight they need to navigate these realities without reinforcing harmful assumptions. It emphasizes the need for tailored interventions that address substance abuse and mental health together, recognizing the complexity of dual diagnosis in people with IDD.

Recognizing Substance-Use Warning Signs in Adults with Intellectual and Developmental Disabilities

Later modules focus on identifying early warning signs and behavioral changes that may indicate substance use. Deficits in communication skills can make it challenging for supporters to recognize these warning signs, as people may struggle to clearly express their needs or concerns. Additionally, a family history of substance use disorder can increase vulnerability in people with IDD.

Because communication styles vary, and because many people with IDD express distress through changes in routine or behavior rather than words, this section is especially valuable. Individuals with mild intellectual disability may be at greater risk for substance use problems due to increased independence, social interaction, and exposure to social pressures. Limited communication skills may prevent individuals from expressing distress verbally, making it harder to identify when something is wrong.

Additionally, impairments in adaptive functioning and the presence of cognitive disabilities can further complicate the identification of substance use warning signs, as these factors may mask or mimic symptoms. The high prevalence of mental health disorders and psychiatric conditions among people with IDD can also complicate the identification of substance use warning signs, as symptoms may overlap or be misattributed. It helps supporters distinguish between typical behavior changes, mental health struggles, and signs that substance use may be occurring, offering clarity where many have previously felt uncertain or overwhelmed.

What Supporters, Case Managers, and Care Teams Can Do 

Equally important, the course explains what supporters can actually do. Accessible treatment services, including specialized SUD treatment and substance abuse treatment tailored to people with intellectual and developmental disabilities, are critical for ensuring equitable opportunities to address substance use challenges and improve overall wellness.

Instead of only outlining symptoms, the modules provide a compassionate and practical toolkit for walking alongside someone with IDD who is navigating substance-use challenges or returning to use. It offers guidance on communicating respectfully, creating emotional safety, responding to setbacks, and building trust.

The course also highlights the need for specialized treatment programs and trained treatment providers who understand the unique needs of individuals with IDD. Integrating mental health services into support plans is essential for addressing co-occurring disorders and ensuring comprehensive care. Recovery is rarely linear, and this course equips supporters with the confidence to remain consistent, person-centered allies through every step.

IntellectAbility’s contributions helped ensure this guidance mirrors real-world practice. Support staff are often stretched thin and eager for tools that reduce uncertainty; case managers juggle complex caseloads and competing demands; families want to support without overstepping their bounds.

The course also addresses the reality that people with IDD are less likely to receive treatment for substance use disorders, emphasizing the importance of advocacy and support. Community resources, such as accessible recovery programs and social integration supports, play a vital role in supporting individuals with IDD throughout their recovery journey. This course addresses the realities these groups face every day. As an example of a tailored approach, a specialized outpatient treatment program can provide accessible, community-based care designed specifically for individuals with IDD and substance use challenges.

Additionally, some treatment programs, such as group therapy and 12-step models, have been successfully adapted to meet the needs of people with IDD by modifying approaches, materials, and structure to enhance accessibility and effectiveness.

Why IntellectAbility Joined This Groundbreaking Project 

At IntellectAbility, our mission has always been to Replace Risk with Health & Wellness for people with intellectual and developmental disabilities.

When approached to serve as source experts for this project, our team recognized the significance immediately. Substance-use disorders among people with IDD are frequently misunderstood, not because supporters lack compassion, but because they lack access to practical, population-specific guidance.

By helping shape this series, we were able to bring forward decades of insight, research, and person-centered experience to strengthen its impact. In discussing diagnostic criteria and population characteristics, it is important to note the historical use of the term mental retardation, which has since shifted to the more respectful and accurate term intellectual disability, reflecting changes in DSM criteria and societal understanding. We also collaborated with public health entities to ensure that the resources and strategies developed are effective in improving outcomes for people with IDD and substance use disorders.

Who Should Take This Free Course—and Why It Matters 

This training is valuable for anyone connected to the intellectual and developmental disabilities community.

Case managers will find it clarifies complex situations they encounter on a daily basis. Support staff will gain confidence in interpreting behavioral changes and offering compassionate, informed care. Clinicians will benefit from its emphasis on trauma-informed and bias-aware practice. Family members and guardians will find tools to help them understand, better communicate, and advocate. Group-based programs included in the training foster support among other members, helping participants build essential social skills through peer interaction and shared experiences.

Because the modules are free and self-paced, the course removes barriers and invites broad participation across the field. The curriculum also emphasizes the importance of teaching refusal skills as a crucial part of prevention and intervention, enabling individuals to resist peer pressure and make healthier choices.

How to Access the Free CIEES Course on IDD and SUD 

Getting started is simple. The complete course—Working with Adults with Intellectual or Developmental Disabilities & Substance Use Disorders—is available now at: https://cieesodu.org/sud-in-idd/.

Enrollment takes only a moment, and learners can progress through the modules at their own pace. CIEES also encourages feedback to support ongoing improvement and future expansion of the material.

A New Standard for Understanding SUD in People with Intellectual and Developmental Disabilities. 

Ultimately, this initiative represents far more than a new training module. It signals a shift in how the field views risk, trauma, recovery, and autonomy for people with intellectual and developmental disabilities. It acknowledges that substance-use disorders deserve intentional, informed attention within disability services. And it marks the beginning of a much-needed conversation about health equity, safety, and belonging.

IntellectAbility is honored to have contributed to this first-of-its-kind educational resource. We encourage supporters, teams, and organizations across the country to engage with these modules and share the course widely.

When we expand our knowledge, we reduce risk. When we reduce risk, we improve lives. And when we improve lives, we move closer to a world where every person with IDD receives the informed, compassionate support they deserve.

Additional Resources 

If you’re looking to continue strengthening your skills, deepening your understanding of IDD health and wellness, or expanding professional development opportunities for your team, these resources offer accessible next steps. Each one is designed to support person-centered, informed, and proactive approaches for those who work alongside people with IDD.

• Access the Free CIEES Course on IDD & Substance-Use Disorders: Explore all 11 modules and begin learning today at https://cieesodu.org/sud-in-idd/ 

• IntellectAbility Academy: Build essential knowledge through on-demand, expert-led courses covering health, safety, and person-centered practices for people with IDD.

• Virtual Person-Centered Thinking Training (VPCTT): Join our NADSP-accredited, facilitator-led training designed to help supporters keep the person’s voice at the center of every decision.

• Free IDD-Perspectives Webinars: Watch upcoming or past 45-minute webinars featuring experts discussing critical topics in IDD health, safety, and support.

 

 

IDD Perspectives: Top Challenges in Supporting People with Dual Diagnosis – Insights from Dr. Craig Escudé and Dr. Ben Margolis

 

When people talk about mental health, they often imagine traditional therapy appointments, psychiatric evaluations, or the challenges faced by the general population. But for people with intellectual and developmental disabilities (IDD)—including both developmental disability and intellectual disability—who also experience a dual diagnosis, the picture looks very different.

Dual diagnoses refer to the co-occurrence of intellectual, developmental, and mental health conditions, such as when a person with IDD also has a mental health condition. Their needs are layered, their communication styles may vary, and their support requires deep collaboration across supporters, clinicians, and systems that are not always designed with people with IDD or the complexity of diagnosing and treating specific disorders in mind.

During IntellectAbility’s recent IDD-Perspectives webinar on November 13, Dr. Craig Escudé and neuropsychiatrist Dr. Ben Margolis explored the realities of supporting people with dual diagnosis. What emerged was a candid conversation about the gaps, challenges, and opportunities facing the field, and how person-centered thinking, communication, and proper training can change outcomes.

This blog distills that conversation into key themes intended to help supporters, clinicians, and systems better understand the complex landscape of mental health and IDD.

 

The Training Gap: Why Most Clinicians Are Unprepared

 

One of the most pressing issues highlighted in the webinar is the simple fact that most healthcare providers receive little to no formal training in caring for people with intellectual and developmental disabilities. This gap extends across medical schools, psychiatric residencies, and continuing education programs. In fact, as Dr. Margolis explained, it is entirely possible to become a board-certified psychiatrist without ever evaluating a single patient with IDD.

This lack of educational exposure has real consequences. People with IDD often experience and express symptoms differently, particularly when it comes to mental health. Signs of distress, pain, or mental illness may show up as changes in behavior rather than in verbal descriptions. Without proper training, clinicians may misinterpret these changes or overlook vital signs altogether. This also impacts the ability of clinicians to recognize and diagnose co-occurring conditions, which can further complicate support for people with IDD.

Dr. Escudé emphasized that the issue isn’t that clinicians don’t care; it’s that many simply don’t know what they don’t know. They are skilled at diagnosing and treating mental health conditions as they present in the general population, but supporting someone with IDD requires a different lens, one that takes into account communication differences, sensory sensitivities, trauma history, environmental factors, and the evaluation of abilities as part of the diagnostic process.

Improving healthcare for people with IDD starts with strengthening that lens. More clinicians need access to structured training, such as the Curriculum in IDD Healthcare, and a greater awareness of diagnostic tools specifically created for this population, including resources like the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), which provides standardized criteria. Together, these resources help providers approach mental health care in a more informed, person-centered way.

 

Evidence Gaps and Off-Label Treatment: Working Without a Complete Roadmap

 

Supporting people with IDD and dual diagnosis is further complicated by limited evidence. Because people with intellectual and developmental disabilities have historically been excluded from clinical trials, the psychiatric medications used to support them are often prescribed off-label. Only two medications are currently FDA-approved for autism-related aggression. Everything else—mood stabilizers, antipsychotics, antidepressants (which are commonly used to treat depression), and anxiolytics—is used based on case reports, clinician experience, and data from the general population.

This creates a delicate balancing act. Clinicians want to help. Supporters want relief for the person they support for. But without strong, IDD-specific research, it can be challenging to know what will work, how a medication will affect behavior, or how side effects will show up in someone who may communicate differently.

This is why person-centered thinking and close collaboration between supporters and clinicians are so critical. The people who know the person best—direct support professionals (DSPs), family members, behavioral specialists—hold the daily observations that allow clinicians to make informed decisions. They notice subtle shifts long before they become crises: changes in sleep patterns, appetite, social engagement, anxiety, or physical discomfort that may indicate an underlying mental health concern.

Medications can absolutely be the right choice, sometimes even the life-saving choice, for someone with a dual diagnosis. However, without solid evidence, the entire support team must work together closely, monitor the situation frequently, and reassess regularly. In this context, the most potent “data” available is consistent communication and shared understanding of what is truly happening in the person’s life.

 

Fragmented Support Creates Risk—And Supporters Can Help Bridge the Divide

 

Most people with IDD who experience mental health challenges interact with multiple providers: psychiatrists, primary care clinicians, neurologists, therapists, healthcare providers, and behavioral health teams. Yet these professionals rarely operate within the same system. Electronic health records don’t always talk to each other. Specialists don’t always communicate. And supporters are often left coordinating information across a maze of services.

This fragmentation can be dangerous. When two clinicians unknowingly prescribe medications that interact, when no one notices a new medication from the ER, or when different parts of the support team are working from different assumptions, the person at the center faces real risk.

Dr. Margolis described situations in which people with IDD ended up on multiple similar medications, sometimes prescribed by separate clinicians who had no idea what the others were doing. This kind of stacking can cause sedation, respiratory problems, behavioral changes, or cognitive slowing that is then misinterpreted as worsening mental health.

The good news is that supporters have tremendous power to reduce this risk.

Dr. Escudé stressed the importance of maintaining an up-to-date, accurate medication list—including what each medication is for and who prescribes it. A simple, organized “face sheet” that summarizes diagnoses, medications, allergies, specialists, and communication needs can dramatically improve continuity across appointments. It offers a shared reference point that keeps everyone on the same page, even when the systems themselves aren’t designed to share information.

Supporters are often the only consistent link between multiple providers. Their observations and their dedication to ensuring everyone receives the same information form the backbone of safe, person-centered healthcare. In addition to coordinating support, supporters help connect people to community resources for additional support and provide assistance with managing daily activities and support coordination.

 

Mistrust and Fear Are Real—And Clinicians Must Earn Back Confidence

 

For many families and supporters, there is a long history of painful experiences in healthcare settings, including supported living environments. People with IDD have faced overmedication, institutionalization, traumatic procedures, and systemic dismissal of their concerns. These experiences create a deep and understandable mistrust of psychiatric care and medical systems in general.

Dr. Margolis acknowledged this reality with empathy. Families walk into psychiatric appointments needing help but also fearful that they will not be heard, respected, or believed. In a world where misinformation spreads easily and skepticism of medicine is widespread, building trust requires patience, transparency, and humility.

Rebuilding trust starts with communication. It requires doctors and clinicians who listen deeply, supporters who feel empowered to speak up, and support teams who treat each person as a whole human being—not a diagnosis or a set of behaviors. Providers must recognize the expertise of DSPs and families, who bring intimate knowledge that no medical school can teach.

Trust is not restored through policies or protocols alone. It is restored in every conversation, every appointment, every moment when someone chooses connection over assumption.

 

Financial and Time Constraints: The Invisible Pressures Behind Mental Health Care

 

Time is another significant challenge in supporting people with dual diagnosis. Complex needs require longer visits, more follow-up, and greater support coordination. Yet clinicians operate under substantial pressure from packed schedules and reimbursement models that don’t account for the realities of IDD support. Strategies for managing complex support needs, such as prioritizing tasks and coordinating multidisciplinary teams, are essential to ensure effective support.

This creates an unfortunate disincentive: spending the time necessary to thoroughly understand someone’s mental health needs may not “fit” the productivity requirements many clinicians face. However, a thorough evaluation is crucial not only for accurate diagnosis but also for the prevention of worsening conditions through proactive support.

But as Dr. Margolis pointed out, the work is worth it. Even if appointments need to be split, extended, or scheduled differently, making space for complexity can lead to more precise diagnoses, better outcomes, and fewer crises. Supporters can help by communicating early that a person may need extra time or a different structure. This advocacy for thoughtful, unrushed evaluation is not only appropriate but essential, as it helps develop individualized support plans tailored to each person’s unique needs.

 

Why Person-Centered Thinking Matters So Much in Mental Health and IDD

 

Person-centered thinking is the foundation of good mental health care for people with IDD. It requires everyone on the support team to see the person first: their preferences, triggers, routines, trauma history, and communication style. People with IDD experience a full range of emotions, conditions, and challenges, just like anyone else. Person-centered thinking guides supporters to interpret behaviors as signals rather than problems, and it helps clinicians understand the context behind changes in emotions or actions.

Throughout the webinar, Dr. Escudé and Dr. Margolis emphasized that the best insights often come from those who spend the most time with the person. Direct support professionals and case managers are not “just staff.” They are the experts in knowing how a person communicates distress, happiness, confusion, pain, or emerging mental health concerns, including mental health disorders.

Their observations form the backbone of effective treatment plans, accurate diagnoses—including mental health disorders—and safe medication use. Person-centered thinking ensures these insights are valued and incorporated into every step of support, especially when behavioral health teams address both mental and behavioral disorders.

 

No Crisis Is Hopeless When We Work Together

 

One of the most powerful messages from the webinar came near the end: there is no hopeless situation when it comes to mental health and IDD. Even when behaviors are extreme or frightening, even when symptoms escalate quickly, solutions emerge when supporters, clinicians, and support teams collaborate with openness and patience. Recovery remains a central goal of crisis intervention, guiding efforts toward positive outcomes.

Dr. Margolis reminded attendees of an old medical saying: “The first thing you do when arriving at an emergency is take your own pulse.” Staying grounded helps everyone think clearly, communicate effectively, and avoid acting out of fear. Understanding how the brain functions during mental health crises can further support effective responses.

Through effective communication, education, and person-centered thinking, even the most challenging situations can be stabilized. Crises end. Understanding grows. And the person at the center gets the support they deserve.

 

Additional Resources:

 

If you’re looking to expand your understanding of mental health in people with intellectual and developmental disabilities, consider exploring:

• The Curriculum in IDD Healthcare
  A CME/CEU-approved eLearning course used by medical schools, nursing programs, and clinicians across the country. It covers clinical foundations for providing competent healthcare to people with IDD—skills that directly address the training gaps discussed in this webinar.
• The IDD Health Matters Podcast
  Hosted by Dr. Escudé, each episode features voices from across the field—including clinicians, DSPs, people with IDD, state leaders, and self-advocates.
• More free, 45-minute webinars in our IDD Perspectives series

Explore our full IDD-Perspectives webinar series to learn from clinicians, experts, and self-advocates on topics that matter most in IDD healthcare.

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