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The Lost Art of Person-Centered Coaching

In our recent survey of about 700 supporters in the field of IDD, it was found that nearly 42% admitted that keeping the person-centered momentum going after Person-Centered Thinking training was a real struggle. When these supporters were asked what could keep the momentum going despite dynamics in the field, most of the responses echoed such things as:

“Ensuring that everyone feels confident and supported within their corporation and workplace.”

“Routine training. More people having the baseline understanding and passion of it and for it.”

“Ongoing communication and training about the status of approaches.”

PCT Training is Not Enough

PCT training lays a foundation, imparts valuable skills and techniques, and creates a positive expectation in the new, person-centered way one provides supports and services to people with IDD. What our survey revealed was what many of us know by experience is true- that just going to a Person-Centered Thinking (PCT) training is not enough.

There must be supports and structures in place that routinely challenge us to change how we think, respond, use, and propel the benefits that come from a person-focused approach. It is akin to pushing a kid on a bike with training wheels. When a push is given, the headwind, gravity, and friction are overwhelmed by the force of acceleration. However, without another push, acceleration will give way to these other more powerful forces, and the bike soon completely stops.

Person-Centered Coaching is an Art

Person-Centered Coaching is an art in that it is an application of creative skill built upon training in specific techniques. Coaching provides the continual push that keeps the person-centered acceleration going, thereby overcoming the often more powerful forces of staff turnover, work distractions, a feeling of not being supported by leadership and general difficulty of supporting folks in community settings.

5 Ways Person-Centered Coaches Keep the Momentum

  1. Coaches don’t wait for staff to ask for help but take initiative and work alongside staff to maintain a mindset of inclusion, respect, and positive encouragement when supporting people in service.

  2. Coaches learn how to walk staff through the eleven person-centered skills to ensure valuable information is accurately gathered and not lost when staff changes.

  3. Coaches are trained to recognize a staff member’s learning style and how to track person-centered skill proficiency through four stages of learning.

  4. Coaches learn to use stories and other motivational skills to inform and inspire. This framework means the Coach can provide feedback in a way that is most beneficial to the supporter and the person supported.

  5. Finally, coaches provide subject matter support to organizational leaders to weave person-centeredness into the fabric of their current organization and to ensure new initiatives are consistent with best person-centered practices fulfilling needs such as, “Everyone feels confident and supported within their corporation and workplace.”

Contact us today if you’re interested in training your key staff 

on the art of Person-Centered Coaching.

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How to Prepare for a Clinician Visit: Practical Guidance for Supporters of People with IDD 

How to Prepare for a Clinician Visit: Practical Guidance for Supporters of People with IDD

At IntellectAbility®, we believe that informed supporters create better health outcomes. For people with intellectual and developmental disabilities (IDD)—including conditions such as autism spectrum disorder, cerebral palsy, Down syndrome, and attention deficit hyperactivity disorder—a well-prepared medical visit can make the difference between early intervention and missed warning signs.

The benefits of well-prepared medical visits for people with IDD include improved access to care, better health outcomes, and enhanced quality of life.

Introduction to Intellectual and Developmental Disabilities

Intellectual and developmental disabilities (IDD) refer to a diverse group of conditions that affect how a person thinks, learns, communicates, and interacts with the world. These developmental disabilities can include autism spectrum disorder, cerebral palsy, Down syndrome, and other intellectual disabilities that begin in childhood and impact a person’s life across the lifespan.

Understanding the unique challenges and strengths of people with IDD is essential for providing effective support and quality healthcare. Leading centers, such as the University of Rochester Medical Center, are at the forefront of research, education, and medical care for developmental disabilities IDD, helping to advance our understanding and improve outcomes for individuals and families.

By deepening our knowledge of intellectual and developmental disabilities, we can better support the health, well-being, and inclusion of people with IDD in all aspects of community life.

IDD Perspectives Webinar: Preparing for a Clinician Visit

Our IDD Perspectives webinar series brings together national experts from leading centers and research institutions dedicated to IDD to share their knowledge and experience, offering valuable resources for organizations, supporters, and family members. These research and education efforts contribute to advancing understanding and improving outcomes for people with IDD.

During a recent IDD Perspectives webinar, Dr. Craig Escudé sat down with featured expert guest Dr. Rick Rader, a renowned physician and advocate in the field of disability healthcare, who leads a specialized center for IDD healthcare, along with other national experts, to discuss how supporters can help ensure clinician visits are purposeful, person-centered, and effective. The discussion draws on the latest findings from researchers in the field.

This webinar aims to explore key topics related to health, safety, and independence for people with IDD, providing practical insights on these key topics to equip supporters, family members, and other stakeholders with actionable strategies, while also addressing ongoing program development and the vision for improving care for people with IDD.

Here’s what they shared.

Begin With Purpose

Every appointment should start with clarity.

Ask yourself:

  • Why are we going?
  • Is this routine or in response to new symptoms or behaviors?
  • What questions or concerns need to be addressed?

Understanding the why keeps the visit focused and helps clinicians deliver meaningful care.

“Don’t leave home without knowing the keys to a purposeful medical appointment.”
— Dr. Rick Rader

Know the Provider

Not all clinicians have experience supporting people with IDD. Well-trained, competent providers—especially those trained in IDD medicine—are essential for ensuring quality healthcare and meeting the unique needs of individuals with IDD. Consider:

  • Is the provider familiar with the person and their health history?
  • Does the office have experience with disability-inclusive care?
  • Does the clinician speak directly to the person whenever possible?
  • Does the provider have experience working with patients with intellectual disabilities or intellectual disability?

Family physicians often serve as primary care providers for people with IDD in community-based settings, playing a key role in managing ongoing care.

A trusted, IDD-competent provider makes a world of difference in comfort, communication, and outcomes. Primary care is a central element in ongoing healthcare delivery for people with IDD, ensuring continuity and coordination of services. Integrated healthcare delivery models, which bring together primary care, behavioral health, and long-term supports, can significantly improve outcomes for individuals with IDD.

Prepare Ahead of Time

Preparation is one of the most important roles a supporter plays. Bring:

  • Up-to-date medical history and medication list
  • Communication tools or notes on communication preferences
  • Behavior or health tracking logs
  • Knowledge of any pre-appointment instructions (fasting, labs, etc.)

It is also essential to understand and prepare for the individual’s specific healthcare needs, including any special healthcare needs related to intellectual and developmental disabilities, to ensure a productive appointment.

Supporters should stay for the entire appointment, actively listen, and be ready to advocate respectfully and confidently.

Supporters aren’t just companions—they are partners in care.

Mental Health Considerations for People with IDD

Mental health is a critical component of overall well-being for people with intellectual and developmental disabilities.

Individuals with IDD are at a higher risk for mental health challenges, including anxiety, depression, and behavioral disorders, compared to the general population. Addressing these needs requires a comprehensive approach that recognizes the unique experiences and circumstances of people with developmental disabilities.

Access to specialized mental health services—such as counseling, behavioral health support, and therapy—is essential, as is ensuring that healthcare providers are trained to understand and respond to the mental health needs of people with IDD. The American Association on Intellectual and Developmental Disabilities (AAIDD) offers valuable resources and guidance for families, providers, and support people, helping to improve access to mental health services and promote positive health outcomes for the IDD community.

Communicate, Collaborate & Advocate

Supporters play a vital role in ensuring the person’s voice, needs, and preferences guide the visit.

Advocacy for all persons with developmental disability is crucial to ensure equitable and comprehensive care. Effective advocacy takes a holistic, personalized approach that considers all aspects of a person’s life, recognizing that optimal health and well-being go beyond medical conditions.

Supporting individuals with IDD in making and communicating their own healthcare decisions is essential to promoting autonomy and ensuring their care aligns with their wishes. Support people can help advocate for the person’s needs and preferences, making sure they are understood and respected throughout the visit.

Key actions include:

  • Encouraging direct communication between provider and patient
  • Clarifying follow-up steps and treatment plans
  • Documenting medication changes, symptom updates, and referrals
  • Advocating to improve access to care and resources for persons with intellectual and developmental disabilities

“The most important role a DSP plays is that of an advocate.”  — Dr. Rick Rader

Communities play a significant role in supporting advocacy and care for people with IDD, helping to address disparities and tailor services to the unique needs of each individual.

Create a Disability-Friendly Experience

Small accommodations can transform the visit. Supporters can:

  • Request sensory-friendly or quiet waiting areas
  • Ask for extra time if needed
  • Ensure the environment supports comfort and dignity

And remember: the relationship with the provider’s office matters. A kind, collaborative tone supports better care for everyone. These efforts help promote the overall well-being of people with IDD during healthcare visits.

Addressing Health Disparities

People with intellectual and developmental disabilities experience significant health disparities, including higher rates of chronic conditions, lower life expectancy, and poorer health outcomes than the general population.

These disparities are often the result of barriers to healthcare access, limited provider training, and a lack of tailored health education for people with IDD and their families. Addressing health disparities requires a coordinated effort to improve access to quality healthcare, enhance provider education, and empower individuals and families with the knowledge and resources they need. The National Council on Disability (NCD) has identified the reduction of health disparities as a top priority, calling for increased investment in education, services, and research to ensure that people with developmental disabilities IDD receive equitable care and support throughout their lives.

 

Additional Resources:

  • Health Passport Tool: Share essential health and communication details easily and quickly. For example, this tool has helped individuals with cerebral palsy and other developmental disabilities communicate their unique needs to healthcare providers, improving care outcomes.
  • IDD Health Matters Podcast: Listen to Episode 1 featuring Dr. Rick Rader for deeper insight. The podcast shares examples of real-world challenges and solutions for people with IDD, including children diagnosed with conditions like cerebral palsy.
  • Free 45-Minute Webinar Series: Explore upcoming IDD Perspectives webinars and recordings. These webinars provide examples of best practices and highlight how people with IDD experience health disparities, offering strategies to address these gaps.

Ongoing education and specialized programs are vital for empowering the IDD community, families, and professionals, ensuring everyone has access to the latest knowledge and support.

Programs focused on pediatrics and special healthcare for children diagnosed with developmental disabilities are essential for early intervention and tailored care. Improved access to preventative care services, such as screenings and immunizations, is also critical to addressing health inequities and improving health outcomes for people with IDD.

IntellectAbility is committed to the ongoing development of new resources and programs to meet the evolving needs of the IDD community.

Want to Dive Deeper?

Watch the full recording of “Preparing for a Clinician Visit.”

At IntellectAbility, we’re here to help you replace risk with health and wellness—one informed visit, one empowered supporter, and one person-centered interaction at a time.

These resources and webinars are informed by the latest research and are designed to support the broader IDD community, including addressing how people with IDD experience health disparities and providing examples of improved outcomes through specialized care and ongoing development.

Rural Health Transformation: A New Opportunity to Improve Health for People with IDD

Rural Health Transformation: A New Opportunity to Improve Health for People with IDD

Across the country, states are receiving new federal funding through the Rural Health Transformation Program, an initiative designed to improve health care access and outcomes in rural and underserved communities. With state award amounts now announced, decisions about how these funds will be used are moving quickly.

This moment presents an important opportunity, especially for people with intellectual and developmental disabilities (IDD), who are often left out of large-scale health improvement efforts despite facing significant health disparities.

 

What Is the Rural Health Transformation Program?

 

The Rural Health Transformation Program, authorized by the One Big Beautiful Bill Act (Section 71401 of Public Law 119-21), provides states with funding and flexibility to strengthen rural health systems. While each state will take a different approach, the program generally focuses on:

  • Expanding access to health care services
  • Improving care coordination and quality
  • Strengthening the rural health workforce
  • Addressing health disparities
  • Enabling technological innovation

States are now developing plans that determine which populations are prioritized, which partners are engaged, and how success will be measured.

 

Why This Matters for People with IDD

 

People with IDD who live in rural communities often face additional barriers to good health, including fewer providers with IDD-specific experience, long travel distances for care, and limited coordination between medical services and long-term supports.

Without intentional inclusion, people with IDD may not fully benefit from new investments, even when those investments are designed to improve equity. Including people with IDD in planning from the beginning helps ensure that system improvements reflect real needs and lead to better outcomes.

 

The Power of Advocacy Right Now

 

With funding levels now public, this is a critical window for advocacy. Providers, advocacy organizations, families, and self-advocates can help shape how Rural Health Transformation funds are used by:

  • Asking state leaders how people with IDD are included in program plans
  • Encouraging states to recognize people with IDD as a priority population
  • Sharing data and lived experience that highlight rural IDD health needs
  • Supporting partnerships between health systems and disability service providers

Early engagement can influence priorities, metrics, and investments — before plans are finalized.

 

How IntellectAbility Helps Advance Inclusion

 

IntellectAbility supports inclusive health transformation by helping organizations understand and address health risks specific to people with IDD. Through practical tools, training, and quality-focused strategies, IntellectAbility helps providers and policymakers integrate disability-informed approaches into broader health initiatives.

By ensuring that people with IDD are considered in risk identification, quality improvement, and workforce training, IntellectAbility helps states and providers strengthen health outcomes while advancing the goals of rural health transformation. Learn more about IntellectAbility at ReplacingRisk.com

 

Looking Ahead

 

The Rural Health Transformation Program represents a promising opportunity to improve health care in rural communities. With intentional planning and advocacy, these investments can also help reduce long-standing health inequities for people with IDD.

Now that funding decisions are underway, voices from the disability community matter more than ever. Inclusion today can lead to healthier outcomes tomorrow — for people with IDD and the communities that support them. Let’s ensure that states put #IDDinRHTP!

 

Sepsis and Disability: The High Cost of a Preventable Medical Emergency

Sepsis and Disability: The High Cost of a Preventable Medical Emergency

For people with intellectual and developmental disabilities (IDD), even minor infections can quickly escalate into life-threatening emergencies. One of the most dangerous yet preventable conditions is sepsis—a severe reaction to an infection that can lead to organ failure, shock, and death if not treated promptly.

Sepsis typically develops from a common infection, such as a urinary tract infection (UTI), pneumonia, or an untreated wound. While early treatment can prevent severe complications, many people with disabilities struggle to communicate pain or discomfort, making it crucial for supporters to recognize early warning signs. However, a lack of awareness, understaffing, and delayed medical intervention often result in preventable hospitalizations, costly treatments, and tragic outcomes. The following case is based on real-life events.

Sophia’s Story: A Small Infection with Life-Threatening Consequences

Sophia, a 38-year-old woman with autism and epilepsy, lived in a group home where supporters assisted her with daily needs. Due to sensory sensitivities and communication challenges, she had difficulty expressing discomfort, which made her vulnerable to undetected medical issues. She needed help with toileting hygiene and has a history of urinary tract infections (UTIs).

One afternoon, Sophia appeared more withdrawn than usual and refused to eat. Supporters noticed she was running a mild fever, but since she did not verbally complain of pain, they assumed she had a minor cold, gave her fluids, and recommended that she rest. What they didn’t realize was that Sophia had developed a urinary tract infection (UTI), which was rapidly spreading through her body.

Over the next 24 hours, her condition worsened—her fever spiked, her breathing became rapid, and she seemed increasingly confused. By the time emergency services were called, Sophia was in septic shock; her blood pressure had plummeted, and her organs were failing. She was rushed to the hospital and placed in intensive care, requiring IV antibiotics, IV fluids, and life support to stabilize her condition.

The Cost of Unrecognized Symptoms

Sophia remained in the intensive care unit (ICU) for two weeks and required an additional month in rehabilitation before she could return home. She experienced significant suffering and nearly lost her life. Additionally, the financial impact was devastating:

  • Hospital and ICU care exceeded $250,000.
  • Dialysis treatments for kidney complications added another $120,000.
  • Rehabilitation and follow-up medical care costed tens of thousands more.

What makes this situation even more tragic is that it was entirely preventable. Had Sophia’s infection been identified and treated when the first symptoms appeared, she could have recovered with a short course of antibiotics—avoiding the physical suffering, emotional distress, and financial burden that came with her hospitalization

How IntellectAbility’s Tools and Training Impact Outcomes

Sepsis progresses rapidly, but early detection and proper medical care can prevent it from becoming life-threatening. IntellectAbility’s Health Risk Screening Tool (HRST®) and eLearning training programs are designed to catch warning signs early and ensure people with disabilities receive the proper care before a crisis occurs.

  1. Health Risk Screening Tool (HRST): Identifying Sepsis Risks Before It’s Too Late.

The HRST is a scientifically validated tool that helps identify health risks before they escalate into emergencies. When Sophia’s Supporters use this tool:

  • They will recognize that her communication difficulties and history of infections put her at a higher risk for sepsis.
  • A care plan can be put in place to monitor for signs of infection—such as fever, fatigue, or changes in behavior.
  • Supporters can be trained to seek immediate medical attention at the first signs of sepsis, preventing its progression to a life-threatening condition.

      2. Supporter Education: Recognizing the Early Signs of Sepsis

Many supporters are not fully trained to identify the subtle warning signs of infections or sepsis, leading to delays in treatment. IntellectAbility’s training programs empower supporters with the knowledge to:

  • Recognize that changes in behavior, appetite, or energy levels can be early signs of infection.
  • Understand that symptoms like fever, rapid breathing, and confusion are medical emergencies—not minor issues.
  • Take immediate action by seeking medical care before an infection progresses into full-blown sepsis.

       3. A Proactive, Person-Centered Approach to Healthcare

IntellectAbility promotes a proactive, person-centered approach that focuses on preventing medical crises rather than reacting to them. With routine health risk screenings, properly trained supporters, and early intervention, unnecessary hospitalizations and life-threatening emergencies like Sophia’s can often be avoided.

Why Are Preventable Cases of Sepsis Still Happening?

Sophia’s story is not unique. Many people with disabilities suffer from preventable medical crises because of:

  • Delays in recognizing symptoms due to communication challenges
  • Supporters not being trained to detect subtle warning signs
  • Lack of proactive healthcare planning

Sepsis is one of the leading causes of preventable death in people with disabilities, yet simple, low-cost interventions could dramatically reduce its occurrence.

The Solution: Prioritizing Prevention Over Crisis Response

Sophia’s hospitalization—and the overwhelming costs associated with it—could have been avoided with proactive healthcare strategies, supporter education, and early intervention.

Using health risk screening tools and supporter training programs leads to:

  • Earlier detection of infections, reducing hospitalizations
  • Better-trained supporters who can confidently recognize medical red flags
  • Lower overall healthcare costs due to fewer emergency interventions

Sepsis should never reach the point of being life-threatening, yet cases like Sophia’s continue to occur because early warning signs are missed, and treatment is delayed. With the right tools, training, and awareness, these preventable medical crises can be stopped before they begin.

By integrating IntellectAbility’s low-cost, high-value Health Risk Screening Tool and specialized training programs, we can ensure that people with disabilities receive the timely, high-quality care they deserve—reducing preventable deaths, improving quality of life, and easing the financial burden on families and healthcare systems.

The choice is clear: invest in prevention today or face the high cost of delayed action tomorrow

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The Hidden Danger of Aspiration Pneumonia

The Hidden Danger of Aspiration Pneumonia: How a Preventable Condition Led to a Costly Hospitalization

For people with intellectual and developmental disabilities (IDD), maintaining good health requires careful attention to their unique medical risks. Unfortunately, gaps in caregiver training, lack of preventive strategies, and delayed medical intervention often result in severe and costly complications. One such threat is aspiration pneumonia, which occurs when food, liquids, or saliva enter the lungs instead of the stomach, leading to infection.

Aspiration pneumonia is especially dangerous for people with IDD, as many have difficulty swallowing (dysphagia), reduced mobility, or medical conditions that impair their ability to clear their airways effectively. When mismanaged, a minor swallowing issue can quickly become a life-threatening emergency. The following case is based on a true story with names being changed to protect privacy.

Daniel’s Story: A Preventable Health Crisis

Daniel, a 55-year-old man with Down syndrome, resided in a group home where supporters assisted him with daily activities, including meal preparation. Due to swallowing difficulties, he required thickened liquids, modified food textures, and careful supervision during meals to prevent aspiration.

Despite these known risks, staff inconsistently followed his dietary guidelines. One evening, he was served regular fluids instead of thickened liquids. While drinking, he silently aspirated a portion of the liquid into his lungs. Over the next few days, he developed a persistent cough, low-grade fever, and mild fatigue, which supporters mistakenly assumed was just a cold.

By the time he was brought to the hospital, Daniel was struggling to breathe. Doctors diagnosed him with severe aspiration pneumonia, requiring mechanical ventilation and intensive antibiotic therapy.

The Cost of Inaction

Daniel’s condition led to an extended hospital stay, including time in the intensive care unit (ICU), breathing support, and weeks of rehabilitation to regain his strength. He and his family experienced significant suffering that could have been avoided.

The financial toll was also significant:

  • ICU care and hospital treatment exceeded $400,000.
  • Mechanical ventilation and respiratory therapy added another $150,000.
  • Rehabilitation costs and follow-up medical care resulted in tens of thousands more.

Tragically, this entire situation could have been avoided with proper supporter training, consistent adherence to Daniel’s dietary plan, and early intervention when symptoms first appeared

Preventing Aspiration Pneumonia with IntellectAbility’s Tools and Training

Aspiration pneumonia is highly preventable when proper risk assessments and supporter education are in place. IntellectAbility’s Health Risk Screening Tool (HRST) and specialized eLearning training for supporters provide proactive solutions to reduce the risk of aspiration-related complications.

  1. Health Risk Screening Tool (HRST): Identifying Risks Before They Become Emergencies

The HRST is a web-based, scientifically validated tool designed to detect early warning signs of health risks, including aspiration pneumonia. If this tool had been used in Daniel’s case:

  • His high risk for aspiration due to dysphagia would have been flagged.
  • Supporters would have received specific guidance on dietary consistency, positioning, and meal supervision.
  • Routine swallowing evaluations and intervention strategies could have been built into his care plan.
  1. Supporter Education: Bridging the Knowledge Gap

Many aspiration pneumonia cases occur because supporters and direct support staff lack the necessary training to recognize early symptoms and follow preventive measures. IntellectAbility’s training programs empower supporters with the knowledge needed to:

  • Identify the early warning signs of dysphagia and aspiration pneumonia.
  • Implement meal-time strategies, such as proper positioning, slow feeding, and adherence to modified diets.
  • Recognize that symptoms like coughing, throat clearing after eating, or mild respiratory distress are not minor issues but serious red flags requiring prompt action.
  1. Person-Centered Health Management: A Proactive Approach

IntellectAbility promotes a person-centered approach to health and safety, ensuring individuals with disabilities receive consistent, high-quality care tailored to their specific medical risks. This reduces avoidable hospitalizations and improves overall well-being.

A Larger Problem: Systemic Gaps in Healthcare for People with Disabilities

Daniel’s case is not an isolated incident. Many individuals with disabilities experience preventable medical crises due to:

  • Inconsistent monitoring and lack of adherence to care plans.
  • Support staff shortages and inadequate staff training.
  • Delays in recognizing and addressing early warning signs of medical issues.

Aspiration pneumonia is one of the leading causes of hospitalization and death in people with IDD, yet it is highly preventable with the right tools and training.

Taking Action: The Need for Proactive Care

Daniel’s hospitalization was not inevitable. Implementing proactive health screening tools, like the HRST, and evidence-based caregiver training can prevent future cases like this.

Using tools like the HRST can lead to:

  • Fewer emergency hospitalizations by detecting health risks early.
  • Improved supporter confidence and competence in managing medical conditions.
  • Significant cost savings for healthcare systems and disability service providers.

Final Thoughts

Aspiration pneumonia should not be a death sentence for people with disabilities. Daniel’s case is a stark reminder that minor oversights can lead to life-threatening consequences—but also that simple, proactive steps can prevent them.

By equipping supporters with the right training and utilizing tools like the HRST, we can ensure individuals with disabilities receive the care they deserve—reducing preventable hospitalizations, improving health outcomes, and ultimately saving lives.

The question is not whether we can afford to invest in better care. It’s whether we can afford not to.

Take the Fatal out of the Fatal Five

License health and safety training eLearns for your entire organization.

Contact us today to receive 
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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.