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