How One Preventable Emergency Cost Over $450,000

How One Preventable Emergency Cost Over $450,000

Written by Craig Escudé, MD, FAAFP, FAADM

For people with intellectual and developmental disabilities (IDD), proper healthcare is essential to maintaining their quality of life. However, systemic barriers, medical neglect, and inadequate preventive care often lead to severe health complications that could have been avoided. One frequently overlooked issue is gut health, particularly constipation and bowel obstruction.

While constipation may seem minor, it can become a life-threatening emergency if not properly managed. This issue is especially critical for people with IDD who may have difficulty communicating their discomfort or rely on supporters for assistance. This case study, based on a real-life event, illustrates the devastating—and costly—consequences of neglecting constipation in people with IDD.

James’ Story: A Preventable Medical Crisis

James, a 42-year-old man with spastic quadriplegic cerebral palsy, lived in a residential care facility where he depended on staff for assistance with daily activities, including eating, mobility, and toileting. Due to limited mobility and medication side effects, James was at high risk for chronic constipation. Preventing this condition required a consistent bowel management routine, including a high-fiber diet, adequate hydration, stool softeners, and regular monitoring of bowel movements.

Over several weeks, he experienced worsening constipation, bloating, and abdominal pain. Unfortunately, due to staff shortages and inadequate medical oversight, James’s symptoms went unrecognized. His supporters assumed this was a minor issue and failed to seek medical attention until James began vomiting and showing signs of severe distress. By the time he was taken to the hospital, he had developed a complete bowel obstruction, a dangerous condition that required emergency surgery.

 

The Financial and Human Cost of Neglect

At the hospital, imaging revealed James’s intestines were severely blocked by stool, requiring urgent surgical intervention to remove the blockage. His recovery was complicated by an infection and prolonged hospitalization, including time in the intensive care unit (ICU). In total, James spent six weeks in the hospital, followed by a lengthy rehabilitation process. This resulted in significant, preventable suffering for James and his family. Additionally, the financial toll was immense:

  • Hospital and surgical costs exceeded $300,000.
  • Intensive care treatment added an additional $150,000.
  • Follow-up care, including physical therapy and specialized nutrition, amounted to tens of thousands more.

All of this could have been prevented with simple, low-cost interventions: consistent bowel management and early medical attention.

How IntellectAbility’s Tools and Training Could Have Helped

James’s hospitalization was entirely preventable, and this is where IntellectAbility’s tools and training play a critical role. Their Health Risk Screening Tool (HRST) and education programs for supporters could have made a significant difference in James’s case.

  1. Health Risk Screening Tool (HRST)

The HRST is a scientifically validated tool designed to identify health risks before they become medical emergencies. If James’s supporters had used the HRST:

  • His high risk for constipation and bowel obstruction would have been flagged early.
  • Staff would have been alerted to implement proactive strategies such as dietary modifications, hydration tracking, and timely interventions.
  • Preventive measures could have been incorporated into his individualized care plan.
  1. Supporter Training and Education

One of the biggest challenges in supporting people with IDD is inadequate staff training. Many supporters are unaware of the early warning signs of serious medical conditions. IntellectAbility provides specialized training to help supporters recognize and respond to potential health risks. IntellectAbility delivers this training through eLearning courses with low licensing costs to make this training easily accessible and affordable. If James’s supporters had received this training:

  • They would have known that chronic constipation in individuals with disabilities is a serious concern requiring medical attention.
  • They would have been trained to document and track bowel movements and respond appropriately to signs of distress.
  • They could have escalated James’s condition to a healthcare provider before it became a medical emergency.
  1. Person-Centered Approaches to Health and Safety

IntellectAbility emphasizes a proactive, person-centered approach to healthcare. Its resources ensure that people with disabilities receive care tailored to their specific needs, preventing unnecessary hospitalizations and improving overall quality of life.

 

A Widespread, Preventable Issue

James’s story is not unique. Many people with disabilities suffer from preventable bowel complications due to:

  • Lack of Proper Monitoring: Supporters may not track bowel movements regularly, leading to unrecognized constipation.
  • Inadequate Training: Many direct support staff are not trained consistently to recognize early signs of bowel distress.
  • Delays in Medical Attention: Symptoms of constipation and bowel obstruction can be overlooked or dismissed until they become life-threatening.

Bowel-related complications are among the most frequent preventable reasons for hospitalization among individuals with disabilities, yet they often receive little attention in healthcare discussions.

 

The Bigger Picture: A Call for Change

James’s costly hospitalization highlights a larger systemic failure. When preventable conditions like constipation are ignored, they escalate into medical emergencies that strain both the person and the healthcare system. By implementing tools like IntellectAbility’s high-value, low-cost HRST and eLearning training, many of these crises can be avoided.

No one should have to endure a life-threatening bowel obstruction because of unrecognized symptoms. James’s case is a stark reminder that simple preventive measures—such as proper risk assessment and well-trained supporters—can mean the difference between routine care and a medical emergency.

By prioritizing the health needs of individuals with disabilities and leveraging tools like IntellectAbility’s HRST, we can prevent unnecessary suffering and reduce the financial burden on the healthcare system.

The question isn’t whether we can afford to invest in better care, it’s whether we can afford not to.

Author Bio: 

Dr. Craig Escudé is a board-certified Fellow of the American Academy of Family Physicians and the American Academy of Developmental Medicine and President of IntellectAbility. He has over 20 years of clinical experience providing medical care for people with IDD and complex medical and mental health conditions. 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. He is also the host of the “IDD Health Matters” podcast.

Training Support Staff: Four Reasons to Do It and Free Resources to Help

Training Support Staff: Four Reasons to Do It and Free Resources to Help

Written by Craig Escudé, MD, FAAFP, FAADM

Providing quality support for individuals with intellectual and developmental disabilities (IDD) requires a well-trained and knowledgeable workforce. Support staff play a critical role in ensuring the well-being, dignity, and independence of the people they serve. Proper training empowers these professionals with the skills and confidence to provide exceptional care.

Why Training Support Staff Matters

1. Enhancing Quality of Care

Untrained or undertrained staff may struggle to recognize health risks, behavioral concerns, or communication needs. Comprehensive training equips them with the knowledge to provide effective, person-centered care and respond appropriately to situations.

2. Reducing Risks and Preventable Harm

Many individuals with IDD have unique health challenges that require specialized attention. Training in areas like health risk mitigation, recognizing signs of medical distress, and understanding behavioral support strategies can prevent adverse outcomes and improve quality of life.

3. Improving Job Satisfaction and Retention

When staff feel competent and supported, they are more likely to find their work fulfilling and stay in the field longer. High turnover rates are a persistent challenge in IDD services, and investing in training helps create a stable, knowledgeable workforce.

4. Promoting Independence and Inclusion

Well-trained support staff understand how to encourage autonomy and social engagement for individuals with IDD. They learn how to foster skills development and create opportunities for inclusion in the community, which enhances the lives of the people they serve.

Free Training Resources for IDD Support Staff

IDD Perspectives Webinar Series

One of the top free resources available is the IDD Perspectives webinar series from IntellectAbility. These webinars cover many essential topics, including health risk mitigation, dignity-driven supports, and person-centered planning. This valuable training series is accessible on the “Webinars” page and provides practical insights from national experts. 

Additional Free Training Options

The National Alliance for Direct Support Professionals (NADSP) offers webinars, toolkits, and online learning modules.

State and Local IDD agencies often provide free training programs on specific care topics.

Online communities and nonprofits, such as The Arc and Autism Speaks, share educational resources tailored to IDD support professionals.

Staff training is essential for improving care, reducing risks, and fostering a dedicated workforce. With free resources like IDD Perspectives, support staff can access high-quality training to enhance their skills and better serve individuals with IDD. Prioritizing education and professional development benefits staff and the individuals they support, ultimately leading to stronger, more inclusive communities.

The connection between physical health, mental health, and quality of life is becoming increasingly recognized. In 2025, look for integrated health models that address not just medical needs but also mental wellness, nutrition, and fitness. Tools like the Health Risk Screening Tool (HRST) will continue to be critical in identifying health risks and promoting preventive care.

Author Bio: 

Dr. Craig Escudé is a board-certified Fellow of the American Academy of Family Physicians and the American Academy of Developmental Medicine and President of IntellectAbility. He has over 20 years of clinical experience providing medical care for people with IDD and complex medical and mental health conditions. 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. He is also the host of the “IDD Health Matters” podcast.

Seven Trends to Look For in 2025 in Supporting Individuals With Intellectual and Developmental Disabilities (IDD)

Seven Trends to Look For in 2025 in Supporting Individuals With Intellectual and Developmental Disabilities (IDD)

Written by Craig Escudé, MD, FAAFP, FAADM

  1. Person-Centered Approaches at the Forefront

The person-centered philosophy will continue to be central to IDD support. In 2025, expect an even greater emphasis on tailoring services to meet people’s unique needs, preferences, and goals. This approach prioritizes empowerment and ensures that people with IDD are active participants in their support and decision-making. 

  1.  Enhanced Use of Technology

Advances in assistive technology are revolutionizing how people with IDD access education, employment, and independent living opportunities. From smart home devices to communication tools and health monitoring apps, technology will play a crucial role in enabling autonomy and enhancing quality of life. 

 

  1. Holistic Health and Wellness Focus

The connection between physical health, mental health, and quality of life is becoming increasingly recognized. In 2025, look for integrated health models that address not just medical needs but also mental wellness, nutrition, and fitness. Tools like the Health Risk Screening Tool (HRST) will continue to be critical in identifying health risks and promoting preventive care. 

  1. Workforce Development and Training

The IDD support workforce is the backbone of quality care. As the demand for services grows, expect a focus on recruitment, retention, and comprehensive training for direct support professionals (DSPs) and other caregivers. Topics such as trauma-informed care, health risk identification, and person-centered thinking will become essential components of training programs. 

  1. Advocacy for Inclusion and Rights

Advocacy efforts will increasingly focus on ensuring individuals with IDD are fully included in all aspects of society. From workplace accommodations to accessible public spaces and inclusive educational opportunities, the push for equity and inclusion will continue to expand. 

  1. Data-Driven Support and Decision-Making

Data and analytics will play a more significant role in designing effective support strategies. Providers will leverage insights from tools and assessments to create personalized plans that promote safety, health, and independence while continuously improving service delivery. 

  1. Family and Caregiver Support

The critical role of families and caregivers will be more widely recognized, with increased resources to support them. Look for enhanced respite care options, support groups, and training programs to empower those who provide direct care. 

Preparing for the Future Together

The future of IDD support is bright, filled with innovation, and a steadfast commitment to dignity, respect, and opportunity for all individuals. As we move forward, collaboration among providers, advocates, and families will remain key to creating systems that are both effective and sustainable. 

Let’s work together to embrace these advancements and continue building a world where everyone’s abilities are recognized and celebrated. 

Warmest regards,

Craig Escudé, MD, FAAFP, FAADM. President, IntellectAbility

Author Bio: 

Dr. Craig Escudé is a board-certified Fellow of the American Academy of Family Physicians and the American Academy of Developmental Medicine and President of IntellectAbility. He has over 20 years of clinical experience providing medical care for people with IDD and complex medical and mental health conditions. 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. He is also the host of the “IDD Health Matters” podcast.

Unlocking Behaviors: Psychiatric Symptoms

Unlocking Behaviors: Psychiatric Symptoms

Co-written by Risley “Ley” Linder, MA, MED, BCBA & Craig Escudé, MD, FAAFP, FAADM

This article is part of a co-authored series on behavioral presentations in which a physician and a behavior analyst provide insight into real-life case studies to share their expertise on how cogntivie changes can be addressed in an interdisciplinary fashion.

Jerome is a 23-year-old man with a mild intellectual disability who is a proficient verbal communicator, both expressively and receptively. He is a reliable historian and self-reporter who easily conveys his wants and needs. Jerome has no known medical issues but has diagnoses of psychosis and depression for which he currently takes aripiprazole and mirtazapine. He works washing vehicles for the agency where he resides and enjoys playing basketball at the local community center. 

Jerome moved to his current home approximately six months ago, where he resides with three other men close to his age who have similar social and adaptive skills. Over the last four to six weeks, staff members have noted that Jerome has begun refusing to attend work and is not going to the community center. What was once ordinary and occasional frustrations with housemates have now turned to yelling and cursing, slamming doors, and walking away from his home. 

When speaking with Jerome, he is having difficulty focusing and is fidgety. He self-reports that he is sleeping poorly, “needs anger management,” and is “sick of these people bothering me.”  When asked about a recent incident with his housemate that resulted in a physical altercation and law enforcement involvement, Jerome immediately becomes agitated and begins pacing, cursing, and making threats to harm people. Further discussion with the staff has noted that Jerome has been upset for several days and has intense emotional reactions to innocuous social interactions and general task requests.

Medical Discussion

Upon the first review of Jerome’s situation, it seems that these changes he is exhibiting are likely due to environmental and/or psychological conditions. However, because there are so many underlying medical conditions that can cause behavioral changes in people with intellectual and developmental disabilities (IDD), we must always look at the possibility of some treatable medical cause. Even though Jerome is noted to be a good communicator, a person may have difficulty expressing changes in their body, including discomfort.

  • Could Jerome be experiencing pain from something like gastroesophageal reflux disease (GERD) that is causing agitation and a short temper?
  • Could he be waking up at night because of reflux symptoms, and then, because of poor sleep, he is now agitated?
  • Could there be a problem with constipation causing a chronic uneasy or painful feeling?
  • Could he be experiencing medication side effects which include mood or mental changes like agitation and confusion?

It’s always worth evaluating for an underlying medical cause of any behavior change.

Behavior Discussion

As with all people, communication is a key component of our lived experience. The most desirable first action, as a behavior analyst, is for us to be able to observe, interact, and communicate with the people we work with. Jerome has an advantage, in some ways, in that he is a proficient expressive and receptive communicator. Although he may not always express himself in socially appropriate and preferred manners (i.e., with undesirable behavior), inviting Jerome to sit in a calm, quiet environment, away from peers and aversive stimuli, can be incredibly cathartic for him.

When meeting with people who are agitated but do not jeopardize their health and safety, it is important to model the behavior we wish for them to exhibit. This isn’t necessarily done formally, but sitting down, talking calmly and steadily, and finding a quiet area can significantly assist. Doing more listening than talking is also advisable, as well as providing affirming statements when possible and avoiding lecturing! Lastly, and perhaps most importantly, recurrent reminders of potential punishment rarely reduce agitation!

Utilizing effective communication strategies is valuable for assisting the agitated person and allows us to glean valuable insight from the person. Much of the information known about Jerome’s current status comes from him, but also from his willingness to sit and talk with a member of the interdisciplinary team. The interactions with Jerome aim not to punish or lecture him about his behavior but to understand the underlying issues and possible resolutions better.

Outcome

After meeting with the Behavior Analyst, Jerome’s behavioral characteristics and general psychobehavioral status were presented to the interdisciplinary team, including the psychiatrist, as him having a “short fuse,” sustained agitation over several days, “racing mind,” fidgety, “gross overreaction to benign occurrences,” and misperception of social and environmental events. The team agreed that an adjustment to the psychotropic medication regimen would be warranted, which was done slowly over three months. In the eight months since the last medication change, Jerome has shown no instances of aggression, had no contact with law enforcement, obtained competitive employment, and returned to routine basketball games at the local community center. 

As service providers and interdisciplinary team members, we are responsible for ensuring the global health and well-being of the people we serve. Part of this responsibility includes recognizing that some people do benefit from the use of psychotropic medications. A healthy mind and body provide the foundational support that increases the quality of life of any person. 

Author Bio: 

Ley is a Board-Certified Behavior Analyst with an academic and professional background in gerontology and applied behavior analysis. Ley’s specialties include behavioral gerontology and the behavioral presentations of neurocognitive disorders, in addition to working with high-management behavioral needs for dually diagnosed persons with intellectual disabilities and mental illness. He is an officer on the Board of Directors for the National Task Group on Intellectual Disabilities and Dementia Practices, works closely with national organizations such as the National Down Syndrome Society, and is the owner/operator of Crescent Behavioral Health Services based in Columbia, SC. 

Dr. Craig Escudé is a board-certified Fellow of the American Academy of Family Physicians and the American Academy of Developmental Medicine and President of IntellectAbility. He has over 20 years of clinical experience providing medical care for people with IDD and complex medical and mental health conditions. 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. He is also the host of the “IDD Health Matters” podcast.

Unlocking Behaviors: Cognitive Changes

Unlocking Behaviors: Cognitive Changes

Co-written by Risley “Ley” Linder, MA, MED, BCBA & Craig Escudé, MD, FAAFP, FAADM

This article is part of a co-authored series on behavioral presentations in which a physician and a behavior analyst provide insight into real-life case studies to share their expertise on how cogntivie changes can be addressed in an interdisciplinary fashion.

Jamie is a 48-year-old dynamic, energetic, fun-loving person who happens to have Down syndrome. She lives in a small community-based group home with two other people. She’s known as the jokester in the group and always has a way of making her friends laugh. She is an impeccable dresser and fancies cool hairstyles, which she highlights with fashionable hair accessories.

Jamie experienced a pretty big traumatic event in her life when she lost her mother two years ago. It had quite an impact on her. She became a bit withdrawn. She was less interested in many of her usual activities, and as her friend said, “She just wasn’t acting like Jamie anymore.”   Her friends noted that she was less concerned about what she wore, sometimes wearing the same clothing two days in a row. Her hairstyle became much more straightforward and even appeared a bit messy at times. Her usual witty jokes seemed more challenging to come by for her, and often, she took long pauses before answering questions.

Over time, Jamie seemed to need more assistance with usual activities such as preparing meals, and later, she even seemed to have difficulties feeding herself. She occasionally chose a short-sleeved shirt to wear when it was 30 degrees outside, and more than once, she’d put her shirt on backward.

Behavioral Discussion

In the behavioral realm, one of the most challenging things is delineating between psychiatric symptoms (e.g., Jamie’s possible depression symptoms), dementia symptoms, and normal aging in a person with intellectual disabilities.  Over time, I have developed an approach of “prove to me it is dementia.” I have adopted this approach because, far too often, dementia is a diagnosis that seemingly is arrived at too quickly and easily amongst interdisciplinary teams, including physicians and other medical professionals. There are many reasons a person can exhibit changes in cognitive status, mood, affect, or simply changes in their preferences. As behavior analysts, it is critically important for us to keep an eye on all the possible reasons a person could be exhibiting changes in their behavior as we work to delineate changing behavioral presentations as a person ages. 

One of my most commonly used tools for making this delineation is a dementia screening tool developed specifically for people with intellectual disabilities – The National Task Group on Intellectual Disabilities and Dementia Practices – Early Detection Screen for Dementia (NTG-EDSD). The NTG-EDSD can be used for the early detection screening of those adults with an intellectual disability who are suspected of or may be showing early signs of mild cognitive impairment or dementia. The NTG-EDSD is not an assessment or diagnostic instrument but an administrative screen that can be used by staff and family caregivers to note functional decline and health problems and record valuable information for further assessment (NTG, 2013).   Learn more here: https://www.the-ntg.org/about-the-ntg . 

Jamie would likely benefit from the completion of a dementia screening tool, such as the NTG-EDSD, which is recommended on an annual basis for individuals with Down syndrome at the age of 40. This would allow her staff, with a distal and working knowledge of Jamie, to provide insight into the specific areas of her life in which changes have occurred, such as language & communication, activities of daily living, behavior and affect, and potential medical issues, to name a few. These areas can help guide the interdisciplinary team’s decision-making as they work to “prove that it is dementia.”

Screening for dementa
Medical Discussion
Beta-amyloid plaques

Jamie has many classic signs of depression and had a good reason for being depressed with the loss of her mother. However, because Jamie has Down syndrome, she is also at a much greater risk for Alzheimer’s dementia, and the signs and symptoms can overlap. People with Down syndrome have an extra copy of chromosome 21, which also carries a gene responsible for producing a protein called amyloid precursor protein. Too much buildup of this protein in the brain leads to beta-amyloid plaques, which are implicated as a major cause of Alzheimer’s disease. It is estimated that 50% or more of people with Down Syndrome will develop Alzheimer’s, and they are more likely to develop it at an earlier age than those without Down Syndrome.

It’s important to rule out other causes for symptoms that are consistent with dementia. The following can present with signs resembling dementia: 

  • Mental health conditions
  • Brain tumors
  • Vitamin deficiencies
  • Medication side effects
  • Thyroid, kidney and liver disease

There is new and promising research in Alzheimer’s disease, including blood tests that can help diagnose Alzheimer’s dementia. While these tests are currently not available everywhere, soon, we should have widespread availability of blood testing to diagnose the condition. There have also been advances in medication treatment options for dementia, and current trials are promising for the availability of effective treatment options in the near future. Learn more about Alzheimer’s and other dementias at https://www.alzheimers.gov/.

Outcome

Jamie was initially evaluated by a neuropsychiatrist and was diagnosed initially with depression with secondary concern for Alzheimer’s. Medication treatment for depression did improve some of her symptoms, but after testing, talking with her support team, and reviewing her NTG-EDSD screen, she was diagnosed with Alzheimer’s dementia. She is currently receiving support from her team and friends, who have been educated on best practices for supporting people with dementia.

Author Bio: 

Ley is a Board-Certified Behavior Analyst with an academic and professional background in gerontology and applied behavior analysis. Ley’s specialties include behavioral gerontology and the behavioral presentations of neurocognitive disorders, in addition to working with high-management behavioral needs for dually diagnosed persons with intellectual disabilities and mental illness. He is an officer on the Board of Directors for the National Task Group on Intellectual Disabilities and Dementia Practices, works closely with national organizations such as the National Down Syndrome Society, and is the owner/operator of Crescent Behavioral Health Services based in Columbia, SC. 

Dr. Craig Escudé is a board-certified Fellow of the American Academy of Family Physicians and the American Academy of Developmental Medicine and President of IntellectAbility. He has over 20 years of clinical experience providing medical care for people with IDD and complex medical and mental health conditions. 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. He is also the host of the “IDD Health Matters” podcast.

Dementia and Intellectual Disabilities

Dementia and Intellectual Disabilities

Written by Craig Escudé, MD FAAFP, FAADM, September 2023.

Dementia can be a pretty scary thing for anyone. For people with disabilities, changes or a decline in cognitive functioning can be quite challenging to recognize, especially in people who do not use words to communicate.

When we are looking to diagnose dementia, clinicians frequently use tests like a mental status exam where a person is asked to remember lists of items, draw a picture of a clock with numbers on it, and recall current events like naming the current president and the city and state where they live.

For some with disabilities, questions like these may not have ever been able to be successfully answered due to a different baseline of knowledge and comprehension.

So how, then, can we attempt to accurately diagnose dementia in people with differing levels of cognitive baseline functioning? 

One way to do this is to look at changes in functional status over time. There is a tool developed by the National Task Group (NTG) on Intellectual Disabilities and Dementia Practices called the Early Detection and Screen for Dementia (EDSD) (i), which is specifically geared to help assess levels of functional decline over time in people with intellectual and developmental disabilities. This tool is designed to be used by family members and other supporters. Looking at serial measurements annually or every six months can help determine if a person is having a functional decline, but does this mean that the person definitely has dementia? No, it does not. Ruling out other causes for symptoms consistent with dementia is also very important. Mental health conditions, untreated sleep apnea, metabolic toxicity including alcohol, medication side effects, vitamin deficiencies, brain tumors, and thyroid, kidney, and liver disease can all present with signs resembling dementia. However, having the type of information that the EDSD can provide can be very helpful to a clinician in determining whether or not a person has evidence of dementia. When we see changes in cognition, we should never hastily conclude that it is due to dementia but instead look for treatable underlying causes such as those mentioned above. Working with a clinician knowledgeable about dementia in people with disabilities is advisable.

People with Down Syndrome are at a much higher risk of Alzheimer’s type dementia. People with Down Syndrome have an extra copy of chromosome 21, which also carries a gene responsible for producing a protein called amyloid precursor protein. Too much buildup of this protein in the brain leads to beta-amyloid plaques, which are implicated as a significant cause of Alzheimer’s disease. It is estimated that 50% or more of people with Down Syndrome will develop Alzheimer’s, and they are more likely to develop it earlier than those without Down Syndrome. It’s recommended that screening for dementia using a tool like the EDSD be started at age 40.

There have been significant advances in research on Alzheimer’s disease, including the development of blood tests and more sensitive brain scans that can help diagnose Alzheimer’s dementia. While these tests are currently not available everywhere, soon, we should have widespread availability of blood testing to diagnose the condition. There have also been advances in medication treatment options for dementia, and current trials are promising for the availability of effective treatment options in the near future. As with any new treatment, caution is warranted before starting medications, and one should always weigh the risk and benefits of treatment and include frank discussions with the clinician, the person for whom treatment is being considered, and the person’s support network to help ensure that the best decision is made for each individual person.

People who are supporting those with dementia also need support. The NTG also has a Family Support Committee. Activities of the committee include providing written and public comments on federal issues related to dementia, an inclusive, monthly, national online support group for family caregivers, and participating in a Facebook group for caregivers and professionals supporting individuals with Down Syndrome and Alzheimer’s disease. You can learn more about the NTG Family Support Committee by visiting www.the-ntg.org/family-caregivers.

Realizing that someone we love is showing signs of dementia can spark a wave of fear and anxiety. Ensuring a proper diagnosis, involving compassionate clinicians, and aligning ourselves with others facing similar situations can help us gain understanding and position ourselves to continue to grow and thrive in a life that, despite challenges, is filled with many joys and blessings.

Photo Credit: 2024 Rick Guidotti,Positive Exposure. All Rights Reserved. 

References: 

[i] National Task Group on Intellectual Disabilities and Dementia practices. NTG – Early Detection and Screen for Dementia. (NTG-EDSD)

[ii] National Institute on Aging. 2020. Alzheimer’s Disease in People With Down Syndrome

How Healthcare Technology Shapes the Lives of People with Intellectual and Developmental Disabilities

How Healthcare Technology Shapes the Lives
of People with Intellectual and Developmental Disabilities

Written by Dr. Craig Escudé

People with intellectual and developmental disabilities (IDD) experience numerous challenges accessing healthcare and receiving services and supports that result in poorer overall health, lower life expectancies, and reduced possibilities to live a full life of their choosing. Technological advances are facilitating earlier detection of illnesses that are often missed and improving health outcomes for a population with significant health disparities. These advances additionally have widespread applicability extending to people who are aging, people with cognitive decline, traumatic brain injury, and other differences.

Health Risk Informed Telemedicine™

The Health Risk Screening Tool (HRST) is a web-based application used to screen for health risks in people with IDD. Supporters of people with IDD answer simple health-related questions about the person they support, and the tool then provides a person-specific health risk profile to enlighten support teams and clinicians. Beyond identifying those risks, the HRST delivers action steps specific to the person’s risk profile that supporters utilize to mitigate those risks. Using this tool helps supporters to recognize signs of illness sooner and empowers them to act upon them with confidence. Earlier identification of health conditions leads to better outcomes.

In a new health model called Health Risk Informed Telemedicine™, IntellectAbility’s HRST risk profile technology is being integrated into telehealth companies’ electronic health record platforms like StationMD that provide vital telemedicine services to people with IDD. The telehealth clinician then has access to their patient’s most significant health risks, enabling them to make better-informed decisions about the person.

“Watch” That Seizure

Did you know your watch can detect seizures? Electronic watches with motion sensors can detect body movements consistent with seizure activity. They can alert staff or family members of the possible seizure and prompt a check-in on the person.

Improving Safety and Accuracy with Medication Usage

People with IDD often rely on medications to treat health conditions. Still, delivering those to the person can be complex, especially in enterprise settings like group homes and supported living arrangements when relying on others to assist in administration, record keeping, and other related processes.

Technology, through the use of apps tailored to IDD Residential workflows along with their app-connected medication boxes that only provide access to the right medications, at the right times, for the right people, can dramatically improve medication and regulatory compliance and independence for the individual.

Additionally, this technology, such as that from ImpruvonHealth, can drastically reduce the number of medication errors, improve safety, and reduce the time needed by nursing and direct support staff to deliver medication to the person.  

Monitoring From Afar

Remote monitoring systems can enable people who need extra support to live more independently. They may come in the form of web-connected alarms that can alert a support staff member if the oven is left on, if a smoke alarm goes off, and if a person falls. Or, they can prompt people to perform activities such as daily grooming or taking their medication at the right time, allowing them to live more independently without having someone in their home 24/7.

The independence gained from utilizing such supports can be life-changing to the person, allowing for more privacy and independence while still assuring safety. Companies like SimplyHome focus on using these remote supports to improve independence for people with IDD.

What Did You Say?

Everyone communicates. We may not all use words, but we all definitely communicate. People with IDD can frequently comprehend more than most people assume, but they may not be able to communicate effectively through speaking and writing. However, there are technological advances that improve their ability to communicate.

There are numerous devices that can facilitate communication, as well as apps that can be used on tablets and phones to assist someone who has a limited ability to use words to communicate to be able to type in words or utilize pictures to communicate more effectively with others.

Getting From Here to There

There are also apps that have been developed to assist people with IDD to navigate more successfully in their communities. Other apps can prompt them to stay on task and digitally connect to a virtual job coach when they need support at work. Apps like these help foster greater independence while reducing the need for paid, in-person support during these activities.

 

Technology is advancing in so many ways and at such a pace that one can only imagine the future. I encourage “techies” out there to give attention to research and development of technology related to improving health, wellness, freedom, and independence for some of society’s most at-risk. And to take it one step further, imagine what collaboration between these different technologies could offer.

Unlocking Behaviors: Gastrointestinal Distress

Unlocking Behaviors: Gastrointestinal Distress

Co-written by Risley “Ley” Linder, MA, MED, BCBA & Craig Escudé, MD, FAAFP, FAADM

This article is part of a co-authored series on behavioral presentations in which a physician and a behavior analyst provide insight into real-life case studies to share their expertise on how behavioral issues can be addressed in an interdisciplinary fashion.

Rick is a 43-year-old man with a moderate intellectual disability. He is very active and is described as a “high-energy” person. He was transferred to a new group home after his last one closed due to the inability to find enough staff to meet the needs of the people they supported. It was immediately noted by the new support team that Rick frequently searched for things to eat, and most of it was not food. He would look for objects on the ground, find whatever he could, and eat them. A repairman was working on the heater, and Rick managed to grab a small screw and swallow it before anyone could stop him. There was a tear in the vinyl flooring in his room, and staff noted one morning that the tear was a bit larger. Later, they saw him picking the flooring, breaking small pieces off, and eating them.

His staffing needs increased to monitor him more closely and prevent him from ingesting harmful objects. His level of aggression began to increase as staff would attempt to keep him from eating non-food items.

Photo Credit: 2023 Rick Guidotti, Positive Exposure. All Rights Reserved.

Medical Discussion

Eating things of non-nutritional value or non-food items is called pica. People may search for objects on the ground, pull stuff off the wall, or constantly search for some object to chew or swallow. It is more commonly seen in children, pregnant women, and people with conditions such as autism, intellectual disabilities, and schizophrenia. Many forms of pica involve one particular item that a person ingests. 

Examples include:

  • Chalk
  • Clay
  • Dirt
  • Coffee grounds
  • Ice
  • Paper.
pica definition examples

Sometimes pica is associated with underlying medical conditions. One of the more commonly seen conditions in the general population is iron deficiency which may be associated with an ice pica.

In people with intellectual and developmental disabilities, a condition that is noted to be commonly associated with pica behavior is gastroesophageal reflux disease (GERD). One suspected reason for this association is that a person learns that if they swallow more frequently, the acid that causes the pain is washed back into their stomach. They then begin looking for items to eat to stimulate salivation to wash down the acid.

Another commonly seen presentation of GERD is someone who likes to chew on a sock or other object. If you support someone who does this or has pica behavior, you might consider asking for an evaluation for GERD. They may be chewing to stimulate salivation to wash the acid down to relieve pain. Consideration should also be given to checking for Helicobacter Pylori infection, which has been implicated as a cause of GERD.

Behavioral Discussion

When examining pica behaviors, the first question is, “Are there immediate health and safety concerns?” As a few quick examples, is the person in immediate danger from consuming toxic chemicals, uncooked food, sharp items, or unknown items/substances? If so, medical assistance should be sought immediately.  

Second, “What is the historical dynamic of this behavior?”  

In the case of Rick, long-term pica behaviors can result from undiagnosed/untreated medical conditions in conjunction with learned behaviors that actually have logic in their engagement. 

To continue with Dr. Escudé’s point, if a person consumes the brittle, chalk-like substance comprising drywall, they can learn that this eases the discomfort in their stomach, throat, and mouth (e.g., GERD symptoms). The presentation we, as behavior analysts hear is, “They are eating the walls!”  In reality, they have found an “antacid” in their environment that is managing the discomfort they are experiencing.

Behaviorally, pica behaviors should be presumed to require a multidisciplinary approach until proven otherwise. The rare but eye-catching “Rapunzel Syndrome” illustrates how pica behaviors are complex and require insight from various professionals. The combination of trichotillomania (pulling out your hair) and trichophagia (chewing/consuming hair) requires a multi-faceted plan of care that requires behavioral management, psychiatric consultation for potential underlying diagnosis, routine primary care check-ups, and crisis management for potential medical needs – to name a few. 

Chronic pica behaviors can be reduced, particularly if the underlying cause is related to a medical condition. However, the person may still exhibit the pica behavior “out of habit.”   Using the example of a person consuming drywall, they have learned that this behavior effectively alleviates the discomfort they feel. At the beginning of treatment (e.g., taking medication), they may continue to engage in the behavior, as they have to learn that taking medication is a more effective means of reducing discomfort. The person should be monitored after the introduction of a medication to see if the behavior decreases, stops, or even increases, as the medication type, dosing, or other factors may not be the “right fit.”  In other words, if the medication is ineffective in reducing the discomfort, the pica behavior will likely continue. 

If the behavior abates after the introduction of any intervention (e.g., medical and/or behavior) but suddenly re-appears, there could be an acute stimulus that is exacerbating the existing diagnosis and should be evaluated by a medical professional. The pica behavior should also be considered as potentially indicating other medical concerns as the person may have generalized the pica behaviors using the logic, “Well, this helped me the last time my stomach hurt.”

Outcome

Thanks to an astute direct support professional and a responsive team that was aware of the association between pica and GERD, Rick was taken to see a gastroenterologist who performed an endoscopy. He noted numerous gastric and esophageal erosions consistent with GERD. Rick was started on a proton pump inhibitor, and over the next several weeks, his pica behavior slowly lessened. His suffering from GERD symptoms, his overall health risk, and the need for additional staffing were all reduced, resulting in improved quality of life for Rick, his supporters, and the support agency.

Author Bio: 

Ley is a Board-Certified Behavior Analyst with an academic and professional background in gerontology and applied behavior analysis. Ley’s specialties include behavioral gerontology and the behavioral presentations of neurocognitive disorders, in addition to working with high-management behavioral needs for dually diagnosed persons with intellectual disabilities and mental illness. He is an officer on the Board of Directors for the National Task Group on Intellectual Disabilities and Dementia Practices, works closely with national organizations such as the National Down Syndrome Society, and is the owner/operator of Crescent Behavioral Health Services based in Columbia, SC. 

Dr. Craig Escudé is a board-certified Fellow of the American Academy of Family Physicians and the American Academy of Developmental Medicine and President of IntellectAbility. He has over 20 years of clinical experience providing medical care for people with IDD and complex medical and mental health conditions. 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. He is also the host of the “IDD Health Matters” podcast.

Bullying: How You Can Take Action To Identify, Address and Prevent This Destructive Behavior

Sept. Article banner

Written by Lorene Reagan, RN, MS
Published in the August 2023 edition of EP (Exceptional Parent) Magazine. Sign up for this newsletter for free!

As we prepare to return to school, it is critical to ensure all children, including those with disabilities, are in an environment where they can learn, grow, and socialize without fear. This article describes bullying, its consequences, the increased risk children and adults with disabilities face, and prevention strategies.

WHAT IS BULLYING?

Bullying behavior is characterized by unwanted, aggressive behavior that involves a real or perceived power imbalance and is repeated or has the potential to be repeated over time. There are many different types of bullying, ranging from teasing and harassment to actual physical violence. It can occur in person, in writing, or through cyberbullying involving online or cell phone communications.

The magnitude of bullying behavior varies from annoying and emotionally hurtful verbal abuse, distressing social bullying designed to damage a person’s reputation, publicly embarrass or isolate them, to bullying involving physical assault. It’s not uncommon for bullying to begin with verbal taunting and harassment and then, if not addressed, escalate into physical abuse and assault. And people with intellectual and developmental disabilities are susceptible to and at even greater risk than others with disabilities of being bullied.

WHAT ARE THE CONSEQUENCES OF BULLYING?

We all know bullying hurts people in many ways. But did you know:

  • Bullying has serious negative consequences; those who are bullied can experience depression, low self-esteem, decreased academic achievement, health problems, and, in extreme cases, can be at risk for suicide[i].
  • People with disabilities can be bullied by family members, paid and unpaid caregivers, and other supporters, and may be reluctant to report it because of their dependence upon the caregiver and fear of retribution.

The adverse outcomes of bullying are not limited to those who are bullied. According to the US Department of Health and Human Services,[ii] children who are allowed to bully others are more likely to:

  • Abuse alcohol and other substances as adolescents and adults
  • Drop out of school, vandalize property, and engage in fighting
  • Engage in sexual activity earlier
  • Have criminal convictions and be abusive toward others, including their romantic partners, spouses, and children as adults

And those who witness bullying are more likely to:

  • Miss or skip school
  • Have increased mental health challenges, including depression and anxiety
  • Have increased use of tobacco, alcohol, and other drugs

Bullying directed at a person because of their disability may fall under the category of “disability harassment” and rise to the level of a civil rights violation under Section 504 of the Rehabilitation Act of 1973 or Title II or III of the Americans with Disabilities Act[iii]. Those who harass people because of their disability, as well as people and organizations who have a duty to prevent disability harassment, can run afoul of these laws if they fail to address and prevent bullying and harassment appropriately.

WHAT CAN WE DO TO PREVENT BULLYING?

We know that the roots of bullying behavior begin in childhood. According to the American Psychological Association,[iv] steps can be taken to address and prevent bullying. For example:

  • Create an environment that makes it clear bullying will not be tolerated and set positive expectations for both children and adults.
  • Ensure parents, educators, and others in the person’s life are knowledgeable and observant about when and where bullying tends to happen. Bullying generally occurs in areas where supervision is limited or absent such as in bathrooms, playrooms, parks, and on school buses. Cyberbullying via cell phones and computers occurs when access to these devices is not monitored.
  • Be alert to the safety of those most vulnerable to being bullied. Help the person develop a network of allies to reduce feelings of isolation and reduce opportunities for the person to be targeted for bullying.
  • If bullying is reported or observed, intervene immediately to stop it, record the incident and inform those responsible for addressing it.
  • Adults, including parents, educators, and others, are encouraged to be involved in school or community-based safety teams and antibullying task forces and engage and educate children and adults with (and without) disabilities about the skills for identifying, responding to, and preventing bullying.

Bullying has long-ranging consequences for those being bullied, the person exhibiting the bullying behavior, and those who are witnesses to this serious form of mistreatment. Taking steps to recognize, address and prevent bullying is critical to all children and adults’ emotional and physical well-being. And it is especially important for people with intellectual and developmental disabilities, who are at the highest risk for this type of abuse.  

[i] Centers for Disease Control and Prevention. People with Disabilities and Chronic Diseases: Information about Bullying. 2020. https://www.cdc.gov/ncbddd/disabilityandsafety/bullying.html

 

[ii] U.S. Department of Health and Human Services. Bullying and Youth with Disabilities and Special Health Needs. 2020. https://www.stopbullying.gov/bullying/special-needs

 

[iii] US Department of Justice Civil Rights Division. Guide to Disability Rights Laws. 2020. https://www.ada.gov/resources/disability-rights-guide/

 

[iv] American Psychological Association. Bullying. 2022. https://www.apa.org/topics/bullying/prevent

Unlocking Behaviors: Dental Health

Unlocking Behaviors: Dental Health

Co-written by Risley “Ley” Linder, MA, MED, BCBA & Craig Escudé, MD, FAAFP, FAADM

Published by Helen Journal

This article is part of a co-authored series on behavioral presentations in which a physician and a behavior analyst provide insight into real-life case studies to share their expertise on how behavioral issues can be addressed in an interdisciplinary fashion.

When it came to tennis, 37-year-old Tim was a huge fan. He loved watching how fast the players hit the ball back and forth, especially his favorite player Roger Federer. He knew the general timing of the US Open and other major tennis events and would watch as many matches as possible.

Tim enjoyed snacking on almonds and other nuts while watching tennis. One year, during the US Open, he decided he didn’t  want almonds and even knocked them off the table a couple of times. He began to get a bit agitated at various times of the day or night, and his support staff wasn’t sure  what was going on. After a few weeks, Tim became quite a challenge, hitting out at others, wanting to stay in his room more, and even eating less.

Tim was taken to his primary care physician for an evaluation. He underwent a physical exam, and nothing unusual was found except for a 5-pound weight loss since his last visit six months prior. Because of his agitation, he was then seen by a psychiatrist. Staff were concerned that he was endangering himself and others during his episodes of agitation. He was started on psychotropic medication in an attempt to reduce his aggression. It seemed to work for a while, but then the agitation ramped up again. After several psychiatry visits and medication adjustments, the recommendation was made to move Tim to an in-patient psychiatric setting for evaluation.

A relatively new nurse who had recently attended a conference about behavioral changes in people due to underlying medical conditions attended Tim’s final team meeting before he was to be committed. She recalled hearing at the conference how dental issues can cause agitation. She recognized that Tim had not had a dental evaluation in the last three years because of COVID restrictions and his inability to wear a mask. 

Medical Discussion

Primary care physicians are not dentists. (No surprise there). But in the situation described above, primary care clinicians are often asked to evaluate a person with a change in behavior to rule out underlying medical causes. Most people, if they have tooth pain, automatically know to see a dentist and don’t show up at the family physician’s office for an evaluation. But for many people with a limited ability to use words to communicate, agitation is often the first indicator of discomfort, and the initial assessment is usually by a primary care clinician or a psychiatrist. Primary care clinicians aren’t necessarily used to thinking about dental causes of pain because most people will go to the dentist first. 

Anything that causes pain in a person’s mouth can make them agitated around mealtimes (due to the anticipation of pain with chewing). They can also spit out food, prefer soft foods over crunchy foods, refuse to go to the dinner table, refuse oral care, and can even be aggressive.

Behavioral Discussion

Tim’s decreased desire to snack on nuts and watch the greatest tennis player of all time is an entirely preventable situation. Dr. Escudé listed a few behaviors that can happen when a person has pain and/or discomfort in their mouth. It’s  important to recognize these types of behaviors, but Tim’s situation allows us to discuss another area of behavior: acute vs. chronic behaviors. 

Acute vs. Chronic Behaviors

Tim’s preference for snacking on nuts and watching tennis is something that had occurred for many years, and there was an acute change in behavior.

Tim’s acute change in behavior was characterized by changes in:

  • Preferences
  • Routines
  • Medical issues, such as unintended weight loss. 

Sudden changes in behavior and/or new behaviors are more likely to happen because of changes in a person’s environment (e.g., new job) or medical issues (e.g., toothache), as opposed to more chronic issues (e.g., psychiatric symptoms). 

For Tim, having never been prescribed psychotropic medications, the acute onset of psychiatric symptoms in middle age is not a likely cause for the change in food and activity preferences.  

Observing and Assessing

When observing and assessing acute onset behaviors, thinking about three key areas is important. 

  1. First, has anything changed in their environment? Can we clearly identify a change that would account for the rapid change in preferences? 
  2. Second, what is the timeline of changes? When did the behavior change(s) start? Sometimes using events instead of time to track changes can be helpful. For example, “Tim was eating nuts while watching Wimbledon in July, but he wasn’t during the US Open in August. What could have happened in the last month?”  
  3. Lastly, it’s important to note if the behaviors happen across time, setting, and people. If they only happen at one particular time, in a specific setting, or with certain people, they are more likely to be environmental, as opposed to medical-based behaviors that are more likely to happen across time, settings, and people.  
Outcome

The nurse recalled what she learned at the conference and recommended that Tim have a dental evaluation before being admitted to the psychiatric hospital. Tim was found to have several abscessed teeth. After they were all treated, his pain resolved. They tapered off his psychotropic medication, and he made up for all the tennis he missed— and the eating. Tim avoided a psychiatric admission and likely additional psychotropic medicines because of the nurses’ insistence on a dental evaluation. 

The Authors

Risley “Ley” Linder 
Ley is a Board-Certified Behavior Analyst with an academic and professional background in gerontology and applied behavior analysis. Ley’s specialties include behavioral gerontology and the behavioral presentations of neurocognitive disorders, in addition to working with high-management behavioral needs for dually diagnosed persons with intellectual disabilities and mental illness. He is an officer on the Board of Directors for the National Task Group on Intellectual Disabilities and Dementia Practices, works closely with national organizations such as the National Down Syndrome Society, and is the owner/operator of Crescent Behavioral Health Services based in Columbia, SC.

Dr. Craig Escudé
Dr. Craig Escudé is a board-certified Fellow of the American Academy of Family Physicians, the American Academy of Developmental Medicine, and 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. 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.