Health-related Resources for people with IDD and Their Supporters

Health-related Resources for People with IDD and Their Supporters

By Craig Escudé, MD, FAAFP, FAADM
Published by EP Magazine  |  January 2023

With significant health disparities noted in people with IDD, it is important that people with intellectual and developmental disabilities (IDD), their supporters, and healthcare providers educate themselves on the different health risks that are more commonly seen in people with IDD and about what can be done to prevent serious complications. Supporters and healthcare providers are often challenged in finding helpful information related to healthcare for people with IDD. As a physician who started practicing in this field in the 1990s, finding clinically relevant information about healthcare for people with IDD was challenging. Fortunately, over the past several years, more resources have been developed that relate specifically to healthcare issues and improving health equity for people with IDD. In this article, you’ll find a listing of websites, tools, and training available to provide information and guidance to you, whether a family member, paid supporter, healthcare provider, or person with IDD.



Clinical Pearls in IDD Healthcare provides easy-to-understand and clinically relevant information to clinicians and supporters of people with IDD. The book is centered on “clinical pearls,” which are small bits of free-standing, clinically relevant information based on experience or observation. They are part of the vast domain of experience-based medicine and can be helpful in dealing with clinical problems for which controlled data do not exist.
You will find 1-2 page documents covering 55 health-related conditions commonly seen in people with IDD. Topics include medical causes of adverse behavior, sexuality, quality of life, end-of-life care, dental care, polypharmacy, common preventable cause of illness, aging with IDD, and much more. The guide is used by physicians, supporters, nurses, and family members to gain an understanding of the many health issues that are more common in people with IDD. For family members, it can be helpful for self-education but also as a means to provide concise information to physicians who may appreciate additional clinical details related to IDD healthcare.

Electronic Learning Courses

For clinicians looking to receive additional training in IDD Healthcare, the Curriculum in IDD Healthcare is a web-based Continuing Medical Education-approved eLearning course that teaches the fundamentals of IDD healthcare that were likely not taught in clinical training programs. It’s a 6 module, self-paced course that has been studied and shown to significantly improve clinicians’ clinical confidence in providing healthcare to people with IDD. It’s currently used in medical and nursing schools and by practicing clinicians throughout the United States.

The Fatal Five eLearning courses are excellent programs that teach learners about the top preventable causes of illness and death in people with IDD. The specific topics covered in these 7-module courses include discussions about aspiration, dehydration, seizures, bowel obstruction, sepsis, and gastroesophageal reflux, as well as a discussion on knowing when to act to avoid serious complications. The Fatal Five Fundamentals is geared to teach direct support professionals and family members about these topics. The Fatal Five Advanced course teaches about the same conditions at a more clinical level, which is great for nurses.



Special Olympics has a webpage dedicated to health resources for people with IDD. Topics include Health Promotion, Fitness, Health Smiles (dentistry), and many other health and wellness resources.
The Eunice Kennedy Shriver National Institute of Child Health and Human Development has an extensive list of IDD health resources for patients, healthcare providers, and researchers. You’ll find general and condition-specific information, including links to related entities such as the Association for University Centers on Disabilities.
The Vanderbilt Kennedy IDD Toolkit is an excellent resource guide for clinicians and others relating to several common genetic conditions often associated with IDD. In addition to general guidance, there is specific guidance for health screening about conditions like Autism, Down Syndrome, Fragile X, Prader-Willi, and other conditions, as well as a number of valuable resources relating to topics such as informed consent, communication, and behavioral health.


There are two organizations for healthcare providers that offer resources online and provide educational opportunities at their annual conferences. The American Academy of Developmental Medicine and Dentistry focuses on physicians and dentists and the Developmental Disabilities Nurses Association for nurses. Both organizations are excellent resources where providers can enhance their skills and knowledge in providing IDD healthcare and collaborate with others in the field.
Several organizations provide valuable information about specific genetic conditions and syndrome, including the Prader-Willi Syndrome Association, the National Association for Down Syndrome, the National Autism Association, the Autism Society of America, the National Fragile X Foundation, the Angelman Syndrome Foundation, and others. Many of these societies have information tailored to supporters, family members, healthcare providers, and researchers relating to their specific syndrome.

Finding Additional Resources

The internet is filled with resources, but not all are what I’d call “good.” And some contain misinformation or are more based on people’s opinions rather than what is generally considered acceptable and reliable health-related information. When looking for resources, I’d recommend going to websites that are from known entities such as well-known hospital systems, governmental agencies like the CDC and the NIH, or official websites for whatever you are looking for. I also recommend reaching out to people you know in your community to see what resources they recommend. Talk to trusted physicians and nurses or call your local hospital to see if there might recommend a particular resource.

Final Thoughts

I’m sure that there are many excellent resources I have left out. But hopefully, the ones listed here will be useful to many. Educating ourselves about our health and the health of the people we support can help us make better-informed decisions, which can dampen the anxiety and fear we might face when dealing with health challenges.


About the author:

Dr. Craig Escudé is a board-certified Fellow of the American Academy of Family Physicians and the American Academy of Developmental Medicine and is the President of IntellectAbility. He has more than 20 years of clinical experience providing medical care for people with IDD and complex medical and mental health conditions serving as medical director of Hudspeth Regional Center in Mississippi for most of that time. While there, he founded DETECT, the Developmental Evaluation, Training, and Educational Consultative Team of Mississippi. He is the author of “Clinical Pearls in IDD Healthcare” and developer of the “Curriculum in IDD Healthcare,” an eLearning course used to train clinicians on the fundamentals of healthcare for people with IDD.

Missed Diagnosis: How Many Times Have You Seen This Happen?

Jerome is 22 years old. He enjoys NASCAR racing, going to the beach, and eating out at restaurants. He works 12 hours per week at a local grocery store and, in his leisure time, likes to watch sports on TV with his dad and brothers. Jerome uses a wheelchair and requires assistance with activities of daily living, including eating, dressing, and bathing. He communicates primarily through gestures, facial expressions, noises, and pictures, using the basic communication device he received in high school. He lives at home with his parents, who are his primary caregivers. He also receives personal care and employment support during the day from a paid supporter named Cecelia.

Cecelia recently approached Jerome’s mother because she has been noticing changes in his behavior over the past several months. Typically upbeat, Jerome has been frowning more and is less interested in activities that used to make him happy. Last week, when asked if he wanted to stop at a local café for lunch, he shook his head to indicate “no,” yelled, and banged his wheelchair. And this week, Jerome used his communication device to indicate “sick” and “stay home” on a workday-something he had never done before.

Jerome’s mother was also seeing subtle changes in Jerome that were concerning. She shared with Cecelia that Jerome was groaning a lot, not sleeping well at night, and seemed to be eating less than usual at mealtimes. He recently yelled at his brother and purposely knocked a bowl of snacks on the floor while getting ready to watch the Sunday afternoon football game- something he usually loves to do.   He had also started chewing on his hands, causing chafing and redness.

When asked about how he was feeling, Jerome dropped his head, grimaced, looked away, and, using his communication device, indicated he felt “sick,” “tired,” and “mad.”

Jerome’s mother scheduled an appointment with his primary care provider. Unfortunately, this appointment did not go well all around. The provider was new to the practice, as was Jerome, having recently transitioned from his long-time pediatric provider. Jerome and his mother waited for almost an hour past their scheduled appointment time, and when the provider came into the room, she did not acknowledge Jerome, speaking only to his

mother. A cursory exam was done at the same time Jerome’s mother was filling the provider in about his recent behavioral changes and his complaints of feeling sick and mad. In less than 15 minutes, the provider concluded that Jerome was “probably depressed given his situation” and recommended that Jerome be started on tricyclic anti-depressant medication.

In the meantime, Cecelia contacted Jerome’s case manager to inform her of her discussion with Jerome’s mom and to let her know the outcome of his appointment with his primary care provider. The case manager, who was also relatively new to Jerome, thanked Cecelia for the information. Recognizing that Jerome’s symptoms represented a change in health status, she accessed his web-based Health Risk Screening Tool (HRST) record and updated it accordingly.


Using the information provided by the case manager, the HRST recognized the possibility of an undiagnosed gastrointestinal condition as the potential cause of Jerome’s behavioral symptoms and produced a “service consideration” suggesting the need for clinical follow-up to rule out Gastroesophageal Reflux Disease (more commonly known as GERD).

Meanwhile, Jerome was taking his anti-depressant but wasn’t feeling any better. His behavior continued to deteriorate; he lost 12 pounds and called in sick to work so often that he was in danger of losing his job. He was exhausted from lack of sleep, as were his parents.

The case manager called Jerome’s mother to share the service consideration produced by the HRST and assisted her with obtaining a referral to see a gastroenterologist. As luck would have it, the gastroenterologist had a brother with disabilities, was happy to meet and talk with Jerome and his mother, and quickly recognized that Jerome’s “behaviors” were probably related to acid reflux which can cause pain and discomfort at mealtimes and is exacerbated when lying down in bed. Diagnostics were completed, and a diagnosis of GERD was made.

Jerome’s diet was adjusted, and his bed was positioned so that the head of the bed was higher than the foot of the bed. Medications, including antacids and H-2 (histamine) blockers, were ordered. Jerome’s primary care physician was consulted, and the tricyclic anti-depressant was discontinued because a diagnosis of depression no longer seemed appropriate and because this class of medications is to be avoided in people with GERD because it can actually worsen their symptoms.

Within two weeks, Jerome was back to his baseline, smiling, eating, working, and watching the NASCAR races with his brothers.

What happened in this situation?

Jerome was likely the victim of “diagnostic overshadowing,” a phenomenon that stems from cognitive bias and poses a serious health risk for people with intellectual and developmental disabilities (IDD). Often, symptoms that would otherwise be addressed through immediate medical evaluation are discounted and attributed to the person’s IDD. No further assessment is conducted, differential diagnoses are not considered, and medical conditions continue untreated, often while psychotropic medications are being given to “treat” the person’s symptoms. This bias is usually unconscious and can be addressed through healthcare provider education.

Fortunately, Jerome has attentive and knowledgeable caregivers and advocates who understand the importance of “looking beyond the symptoms,” access to a robust health risk management tool, and a disability-competent health care provider. However, there are many others who do not. In order to ensure health equity for all people with IDD, there is a need to:

  1. Ensure health care providers receive education to ensure they are disability healthcare competent
  2. Effectively monitor, identify, and address emerging health risks
  3. Educate support staff to recognize and report symptoms of the “Fatal Five Plus,” conditions most likely to lead to morbidity and mortality for people with IDD: aspiration, constipation, dehydration, seizures, sepsis, and GERD

IntellectAbility can help. Contact us for more information about the Health Risk Screening Tool (HRST), the Curriculum in IDD Healthcare, and our eLearn course on the Fatal Five.

People with IDD at Risk-The June 2022 Joint Commission Sentinel Event Alert

Juanita is a 53-year-old woman. She has a long history of anxiety and depression. Juanita also has cerebral palsy and an intellectual disability and lives in a community residence for people with intellectual/developmental disabilities (IDD).   

For the past couple of days, Juanita has been experiencing increased anxiety. She tells her supporters she feels more tired than usual, has a poor appetite, and has been having “dizzy spells.” Her supporters reached out to Juanita’s primary care provider, who recommended they give her lorazepam, as outlined in her as-needed medication protocol. But it doesn’t help, and Juanita now says she feels like she is going to die.   

While it is not uncommon for Juanita to suffer from acute anxiety, her supporters contacted the primary care provider again, saying, “something just isn’t right with Juanita.” A telehealth appointment was arranged, during which the provider met with Juanita and her supporters. The provider ultimately recommended Juanita be seen in the emergency room to evaluate her symptoms. A diagnostic workup was done, and it was determined that Juanita was having a heart attack and needed immediate intervention. 

Fortunately for Juanita, she can communicate her symptoms, has supporters who know her well and have been educated in healthcare advocacy for people with IDD, and has a relationship with a primary care provider who understands the value of “looking beyond the behaviors” to explore the potential for an undiagnosed medical condition. But this outcome is a best-case scenario and not the typical outcome for people with IDD because of a phenomenon known as “diagnostic overshadowing,” the topic of a recent Sentinel Event Alert issued by The Joint Commission,  a global driver of quality improvement and patient safety in healthcare and a leading accreditation body for healthcare entities.  

Diagnostic overshadowing is a harm that stems from cognitive bias and poses a serious health risk for people with disabilities. Often, particularly in the case of people with IDD who have co-morbid behavioral health conditions, symptoms that would otherwise be addressed through immediate medical evaluation are discounted and attributed to their IDD. No further assessment is conducted, differential diagnoses are not considered, and medical conditions continue untreated, often while psychotropic medications are being given to “treat” the person’s symptoms.   

“Diagnostic overshadowing is a serious safety and quality concern as an initial misdiagnosis can have a significant impact on quality of life, including the physical and psychological wellness of patients,” says Ana Pujols McKee, MD, executive vice president, chief medical officer, and chief diversity, equity and inclusion officer, The Joint Commission. 

According to the alert, the medical literature provides extensive evidence that diagnostic overshadowing exists within clinicians’ interactions with patients of all ages with physical disabilities or diagnoses such as autism, mobility disabilities, and neurological deficits. Unfortunately, most clinicians are unaware of this because medical and nursing schools do not typically include curricula on healthcare for people with IDD, and most practicing clinicians have not had the benefit of education in disability-competent healthcare.  

The Joint Commission Alert recommends the following to address the serious, life-limiting, and sometimes life-threatening consequences of diagnostic overshadowing:  

  1. Create an awareness of diagnostic overshadowing during clinical peer and quality assurance reviews and by addressing it in training and education programs. 
  2. Use listening and interviewing techniques designed to gain better patient engagement and shared decision-making. 
  3. Collect and aggregate data about pre-existing conditions and disabilities and create EHR prompts for clinicians. 
  4. Use an intersectional framework when assessing patients in groups prone to diagnostic overshadowing to overcome cognitive biases and look beyond previous diagnoses. 
  5. Review your organization’s ADA compliance using the added perspective of diagnostic overshadowing to ensure that it meets the needs of patients with physical disabilities. 

IntellectAbility can help.  

The online Curriculum in IDD Healthcare (CIDDH) includes a section specifically designed to instruct health care professions students and practicing clinicians on how to “unlock the language of behavior.” The training emphasizes how in-depth assessment of behavioral or psychiatric symptoms can lead to diagnosis and treatment of underlying medical conditions. 

The CIDDH also provides concrete recommendations for directly and actively engaging people with IDD in their health management and includes effective communication strategies for those supporting people who may not communicate using words. The training also emphasizes the key role of supporters and family members during the diagnosis and treatment process.  

Upon completion of the online modules, physicians and nurses earn Continuing Medical Education (CME) credits or Continuing Education Credits (CEUs) and are eligible to receive the IntellectAbility Recognized Provider in IDD Healthcare award, indicating their commitment to providing quality healthcare to people with IDD.  

According to Dr. Craig Escude, developer of the CIDDH, “As The Joint Commission recognizes, when providers set aside bias and assumption, they can listen to patients more effectively and therefore treat them more effectively. At IntellectAbility, we have decades of experience teaching person-centered methods to clinicians and caregivers who work in intellectual and developmental disability services. Our programs can help medical providers acquire the skills called for in The Joint Commission Sentinel Event Alert.”


Feel free to call us at 727-437-3201 or email us at

When we educate clinicians, we save lives

Physicians, nurse practitioners, physicians assistants, registered nurses, and other clinicians now have an opportunity that they’ve never had before. It’s an opportunity to learn immediately usable, practical clinical information that will improve their clinical skills in one course. It teaches fundamental principles that weren’t taught in school that translate to better healthcare for millions of people. This curriculum course imparts vital skills and information to improve healthcare for anyone who has challenges in communicating verbally. This includes people with dementia, traumatic brain injury, those who are aging, children, and the group for which the course was specifically designed, people with intellectual and developmental disabilities.

The physician-created “Curriculum in IDD Healthcare” consists of 6 online modules and conveys information not previously taught to most clinicians. Numerous, real-life case studies illustrate the concepts in engaging ways that directly translate to practice. Upon successful completion, clinicians earn valuable continuing medical education credits or continuing education units, depending on their discipline. In addition, they can earn recognition by IntellectAbility as a provider who is committed to delivering healthcare to some of society’s most vulnerable citizens.

Help create a healthcare system where anyone, with or without a disability, can present to any office or hospital and receive compassionate and effective healthcare.

To learn more or to take this course, visit our Curriculum in IDD Healthcare webpage.

Benefits of ELearning for Healthcare Professionals

The COVID-19 pandemic has changed many things, including how we work and learn, interact as a society, and of course, the importance we place on good old TP. All jokes aside, professionals have begun to take a sudden new approach to industry-related training and learning. The good news? It may be for the best.

Online education has become widely accepted and sought after in recent years because of its convenience, effectiveness, and versatility.

It is projected to grow in popularity exponentially in direct response to the COVID-19 pandemic. Below we’ll examine some of the benefits this exciting education opportunity offers to professionals of all ages, education levels, and positions.

  • Online learning is conducive to everyone’s needs
    eLearning’s customizability makes it practical for every type of learner. Whether you prefer video, audio, webinars, textbooks, or worksheets, you will have the tools needed to learn long-lasting skills for supporting individuals with disabilities. According to the WHO, professionals “acquire knowledge and skills through online and offline eLearning as well as or better than they do through traditional teaching.”[1] Learning online is much more convenient for professionals seeking CEs and professional growth, making it easier to grasp and digest content. What’s not to love?!

  • Content can be reviewed any number of times
    Unlike traditional classroom teaching, online learning provides professionals the chance to access content an unlimited number of times. Healthcare professionals can turn to this wealth of knowledge when they have questions. Many professionals remember reading something about the topic but do not remember the details of it. Thanks to eLearning, they can find the answers they need within minutes.

  • eLearning is convenient
    We know you are busier than ever, juggling new regulations, best practices, and the needs of those you serve. The last thing we want to do is add more unmanageable tasks to your schedule. eLearning allows you to take courses whenever you have time (and energy!). Professionals who take courses on their own time gain valuable information that is better understood and retained.

  • eLearning allows you to invest in yourself
    By taking the initiative to gain new skills, certificates, and knowledge, you set yourself up for success in your current and future positions. eLearning allows you to stay up to date with healthcare’s latest developments, ensuring you remain competent in your field. Staying current is essential to protecting the people you serve, and it makes your job much more fulfilling and rewarding.

  • eLearning improves quality of living for those we serve
    Working in this industry has its challenges, but above all, we know you are committed to helping those you serve live their best lives. By staying educated and working to grow your skills, you will directly improve the quality of their life. eLearning courses focused on Person-Centered Practices (PCP) teach staff to prioritize the wants and needs of those we serve, not just what they believe is best for an individual. This helps individuals in retaining their autonomy while still receiving necessary supports. Staff who use PCP report feeling more accomplished with their work and closer to those they serve.

COVID-19 has caused professionals to shift their continuing education online rather than halt it altogether, and the benefits are evident. eLearning directly contributes to more successes for individual employees, the company, and above all, the people we serve. Individuals can grow their knowledge and skills at higher rates than ever because of eLearning with added convenience and versatility not available in a traditional classroom setting. eLearning is undoubtedly here to stay, and for a good reason.

[1]   E-Learning as good as traditional training for health professionals: Where is the evidence? (2015, January 15). Retrieved June 17, 2020, from

Death from Aspiration Pneumonia

Originally published December 2016. Updated December 2022. 

Aspiration occurs when foreign material is inhaled into the airway. Causes of death include asphyxiation due to a blocked airway and irritation or infection of the respiratory tract due to inhaled material, or aspiration pneumonia, which will be the primary focus of this article.

Sources of aspirated material include: 

  • food or drink
  • saliva or nasal secretions
  • teeth and dental prosthetics 
  • objects placed in the mouth, such as gum, toys, coins, or other small foreign objects.

These objects are often contaminated, not only with bacteria from the oral cavity but also with whatever outside organisms they encountered before being placed in the mouth.

Aspirated material can also come from the stomach, either due to vomiting or gastroesophageal reflux (GERD). This material is particularly dangerous because of its elevated acidity.

Factors that enhance the risk of aspiration from either source include:

  • altered level of awareness
  • poor trunk control
  • physical deformity
  • medications that are sedating or otherwise impact swallowing
  • alcohol consumption 
  • problems with swallowing, including those associated with the aging process
  • behavioral disorders, which involve food seeking/stuffing or consumption of non-food items (PICA)

Recent antibiotic use or hospitalization, place of residence (such as a rehabilitation facility or a nursing home), and overall level of health can also increase the risk for bacterial infection with aspiration pneumonia. Individuals receiving enteral nutrition (tube feeding) have been determined to have a higher level of risk compared with those who eat by mouth.

Statistics are not readily available, but experienced field clinicians say that roughly 25% of the time, the source of aspirated material comes from above, and 75% of the time, it comes from the GI tract.

Symptoms of aspiration include:

  • bluish discoloration of the lips or
  • coughing or gagging
  • discolored, foul-smelling sputum that may contain blood or pus
  • chest pain
  • shortness of breath
  • fatigue
  • fever
  • wheezing
  • sweating without exertion
  • breath odor and difficulties with swallowing

Examination findings may reveal fever, elevated respiratory rate, altered respiratory sounds, decreased oxygen saturation, elevated pulse, and decreased mental awareness.

Outcomes with aspiration pneumonia can vary greatly depending on many factors, including the severity and extent of the pneumonia, the type of bacteria involved, and the timeliness of treatment. Individuals who are in poor physical condition at the onset of symptoms will obviously not fare as well as those who are healthier.

Aspiration pneumonia is one of the top causes of death in people with IDD, and it can often be prevented. Decreasing the risk of aspiration pneumonia is a task that must be relentlessly pursued from several angles. 

  1. Simply helping individuals attain optimal body positions during and after eating is a vital first step in the process.
  2. Specialized support and positioning both during and after a meal may be required for those who have no or poor trunk control or who have other significant bodily deformities such as severe scoliosis.
  3. The person’s typical response to eating should be known and observed, particularly if they receive enteral nutrition via gastrostomy, jejunostomy, or nasogastric tubes.
  4. Monitoring for decreased oxygen saturation during and immediately after eating can be a good way to detect silent aspiration.
  5. People who have known or suspected swallowing disorders, food-related behavioral disorders, and those whose level of awareness may be impacted by medications or other factors should be given particularly close observation and any necessary mealtime support.
  6. People whose health and nutritional status are compromised should also receive specialized attention and support to decrease their vulnerability.
  7. Health and safety training for you and direct support staff is important. Ensure consistent and comprehensive knowledge of the warning signs of aspiration pneumonia and the remainder of The Fatal Five. 
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