Category: HRST

Optimizing HCBS and Healthcare Spending for People with IDD in a Time of Medicaid Cuts: 10 Strategies for Better Outcomes and Smarter Spending

By Aliah Farley

As states prepare for significant shifts in Medicaid funding, providers and policymakers are asking the same urgent question: How can we continue delivering high-quality services while managing tighter budgets?

The current healthcare system for people with IDD faces unique challenges, including persistent health disparities and the high prevalence of chronic conditions that often co-occur with intellectual and developmental disabilities. These issues highlight the need for improved integration and provider training to address both acute and long-term health needs.

In a recent IntellectAbility webinar, Dr. Craig Escudé, President of IntellectAbility, and Daleigh Tallent, RN, MSN, CDDN, Clinical Director, shared strategies for strengthening Home and Community-Based Services (HCBS) and healthcare for people with intellectual and developmental disabilities (IDD). Various departments at the state and organizational level are responsible for implementing person-centered initiatives and optimizing HCBS. Together, they outlined the challenges ahead and provided ten actionable strategies to improve outcomes while controlling costs.

The Medicaid Landscape in 2025

With the recent federal budget reconciliation bill, Medicaid and CHIP face projected funding reductions of nearly $1 trillion over the next decade. States will feel these impacts differently, but the ripple effects could include:

Fewer HCBS waiver slots and longer waitlists
Increased risk of institutionalization due to loss of community supports
Staffing shortages and provider agency closures
Reduced access to behavioral health services
Increased administrative barriers, such as six-month re-verifications
Changes in eligibility criteria that may affect who is eligible for Medicaid-funded programs and long term services

Reductions in payments to providers and changes in private insurance coverage may further limit access to care for people with intellectual and developmental disabilities (IDD), especially for specialized therapies and services not fully covered by public programs.

While these possibilities paint a concerning picture, Dr. Escudé emphasized a forward-focused approach: “I don’t like to operate by scaring people. I like to say, okay, this is where we are. These are the things that we’re looking at. So, what can we do?”

The increased risk of institutionalization is particularly concerning, as it may lead to more individuals with IDD being placed in facilities or institutions, such as Intermediate Care Facilities/Intellectual Disabilities (ICF/IID), rather than receiving community-based supports. State-supported living centers and other government-supported facilities continue to provide supported care for those with higher medical and behavioral needs, highlighting the ongoing importance of both institutional and community-based options.

Ten Strategies for Optimizing HCBS and Spending

Optimizing Home and Community-Based Services (HCBS) for people with intellectual and developmental disabilities (IDD) requires understanding their unique needs and the benefits of integrated systems. These strategies aim to improve the person’s ability to live independently and achieve better health outcomes.

Prioritize Prevention
Early detection of health issues, especially in children, can improve outcomes by enabling timely intervention and support. For example, screening for physical disabilities or chronic conditions in children allows for early treatment and assistance, reducing suffering, preventing ER visits, and lowering costs.
Focus on High-Risk Populations
Identify high-risk persons and patients at greatest risk of health destabilization by understanding their chronic conditions, affected body systems, and social context. This helps tailor treatment, assistance, and resources to those who need them most, improving outcomes and ensuring that care is patient-centered.
Leverage Data and Predictive Tools
Use data and predictive tools across different provider types and systems to provide services more efficiently. This enables providers to understand patient needs, predict hospitalizations, and intervene early, improving care coordination and resource allocation.
Strengthen Care Coordination
Integrate medical, behavioral, mental health, and oral health supports, as well as medicine, to prevent duplication and missed needs. Addressing both physical disabilities and mental health needs brings significant benefits to persons with IDD. Healthcare providers play a key role in coordinating care and providing treatment for both acute and chronic conditions.
Employ Technology Wisely
Use telehealth, remote monitoring, and data sharing to reduce costly crises. These methods benefit persons with IDD by making healthcare more accessible, especially for those with mobility or transportation challenges.
Adopt Value-Based Payment Models
Value-based payment models incentivize stabilization and improved quality of life over service volume. These models result in less effort and more naturally integrated care planning, making it easier for providers and patients to update and implement service plans.
Invest in Workforce Training and Retention
Equip staff with IDD-specific training, teaching methods, and person-centered thinking skills to reduce turnover and improve care. Teaching staff to recognize and support the body’s health needs, including those related to physical disabilities, helps them better understand and implement person-centered thinking skills.
Reduce Reliance on High-Cost Settings
Expand crisis stabilization options and IDD-focused telehealth to prevent unnecessary hospitalizations. Support people in their own homes and communities to reduce reliance on high-cost facilities and institutional care. For example, the Texas Home Living Program (TxHmL) supports individuals with IDD living with their families or in their own homes, promoting independence and community integration.
Address Social Determinants of Health (SDOH)
Screen for food, housing, and transportation needs that drive health outcomes. Social services and community-based programs provide assistance to families and individuals, addressing social determinants of health and supporting participation in their communities.
Engage People and Families in Planning
Build truly person-centered plans that reflect what people actually need and want. Person-centered thinking skills are essential for supporting self-direction and promoting positive control in service planning. Involve family and family members in planning and decision-making and ensure understanding and respect for the person’s ability and preferences. Supporting individuals in this way leads to more effective, individualized care and better health outcomes.

How IntellectAbility Supports These Strategies

The strategies outlined aren’t theoretical. They are already in practice through IntellectAbility’s tools, training, and services. The aims of IntellectAbility’s initiatives are to enhance independence, self-direction, and quality of life for people with IDD, while providing measurable benefits such as improved health outcomes, increased responsiveness, and better access to integrated care.

Health Risk Screening Tool (HRST®)
- The HRST is the only validated, standardized tool designed to detect health destabilization early in people with IDD.
- It identifies risks across 22 health domains, providing actionable steps for caregivers and clinicians.
- States, provider agencies, various departments, and State Supported Living Centers use HRST data to guide staffing, allocate resources, improve care, and even predict hospitalizations.
- Results are measurable: fewer ER visits, fewer urgent care trips, decreased falls, reduced unnecessary medications, and longer, healthier lives.
The IntellectAbility Academy
- An eLearning platform offering IDD-specific courses for staff at every level.
- Courses on the “Fatal Five” (the top preventable causes of death for people with IDD) equip direct support professionals, nurses, and clinicians with lifesaving knowledge.
- The Academy uses a variety of teaching methods, including interactive modules and scenario-based learning, to impart person-centered thinking skills and reinforce best practices.
- Accessible 24/7 and designed to reduce training costs while improving staff retention.
Curriculum in IDD Healthcare
- A credentialed program that prepares physicians, nurse practitioners, healthcare providers, and other clinicians to deliver competent, person-centered care to people with IDD, a population often underserved in traditional medical education.
- These programs offer significant benefits, such as improved care quality, increased provider competency, and better health outcomes for people with IDD.
Person-Centered Practices
- IntellectAbility provides training and coaching to help organizations embed person-centered thinking and planning into their culture.
- These efforts focus on supporting staff and organizations in adopting and sustaining person-centered approaches for improved service planning and support.
- This not only improves quality of life but also aligns directly with HCBS requirements and value-based care initiatives.

Dr. Escudé and Daleigh Tallent emphasized that the intersection of prevention, data, and training is where costs are lowered and lives are saved. IntellectAbility sits at that intersection.

Moving Forward

Medicaid funding challenges are real, but so are opportunities to innovate, collaborate, and prevent crises before they happen. By applying these strategies—and using tools like HRST, Academy training, and person-centered planning—providers can protect HCBS, support people with IDD, and stretch every Medicaid dollar further.

Want to learn more?

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Supporting Aging People with IDD: Key Insights from Pam Merkle and Dr. Craig Escudé

By Aliah Farley

As life expectancy increases, people with intellectual and developmental disabilities (IDD) are living longer than ever before. This presents both opportunities and challenges for service providers, families, and healthcare professionals.

In a recent IDD Perspectives webinar, Pam Merkle, Executive Director of the Association on Aging with Developmental Disabilities, joined Dr. Craig Escudé, President of IntellectAbility, to discuss the unique issues people with IDD face as they age and practical strategies to help them thrive.

Shared Concerns in Aging

Pam opened the discussion with a powerful reminder: the concerns people with IDD experience as they age are largely the same as those faced by the general population.

Drawing on surveys of adults with IDD, she highlighted the most frequently mentioned worries:

Dementia
Depression
Health problems
Loneliness
Medication side effects

Underlying many of these issues is the theme of loss, the loss of friends, family, independence, mobility, and sometimes even one’s home or trusted providers. “For people with IDD,” Pam explained, “loss often happens at an accelerated pace and with fewer supports in place.”

A Proactive Approach to Healthy Aging

Too often, services for people with IDD become reactive, addressing crises after they happen. Pam emphasized the importance of taking a proactive approach instead, fostering health, identity, and belonging long before problems arise. This aligns with the concept of healthy aging, which focuses on maintaining functional ability and overall well-being throughout life.

Her “Healthy Recipe for Aging” includes:

Exercise and nutrition: supporting physical health through movement and balanced diets. These activities offer significant benefits for maintaining physical abilities and promoting healthy aging.
Cognitive stimulation: encouraging brain health through puzzles, memory games, and activities. Cognitive stimulation, along with education, helps preserve cognitive abilities and other skills, supporting cognitive resilience in older adults.
Friendship development: building supportive social networks to prevent isolation. Social connection provides benefits for emotional health and helps maintain other skills important for daily living.
Identity and reminiscence: affirming who people are through meaningful roles, hobbies, and life stories.
Combating loneliness: creating opportunities for connection, purpose, and joy.

Education is a key factor that supports healthy aging and cognitive resilience. In addition to these, other factors such as social and environmental influences also contribute to the aging process and overall health outcomes.

Pam illustrated this with creative programs developed at her agency, such as “Senior Hotshots,” where older adults with IDD can redefine themselves not only by age, but by the unique talents and interests that shape their identities. Through these programs, older adults with IDD can contribute to their communities, sharing their experiences and skills.

The results, she noted, are striking: fewer emergency room visits, improved mental health, and stronger self-esteem. These benefits highlight the positive outcomes of ongoing efforts to promote healthy aging and address the various factors that influence well-being in older adults.

Addressing Dementia and Cognitive Decline

When someone with IDD shows signs of memory loss, Dr. Escudé stressed the need to rule out medical causes first. Identifying risk factors for dementia and cognitive decline in patients with IDD is crucial for early detection and management. “Don’t jump immediately to dementia,” he cautioned. Hearing or vision loss, medication side effects, thyroid conditions, depression, or even untreated pain can mimic dementia. Comprehensive medical care and timely intervention are essential to address these issues and improve outcomes.

Hearing health, in particular, is critical: untreated hearing loss accelerates cognitive decline and contributes to dementia risk. Research shows that dementia and related conditions can significantly affect individuals with IDD, with chronological age and risk factors such as lifestyle and comorbidities playing a major role in disease progression. Conditions originating in childhood, like cerebral palsy or Down syndrome, can also influence the risk of dementia and late effects as people age.

For those with confirmed dementia, consistency is key. Supporters, including nurses, should maintain familiar staff and routines, use memory aids, and provide clear visual cues. Ongoing follow-up care is important to monitor changes and adjust interventions as needed. Dementia is a leading cause of mortality among older adults with IDD, highlighting the importance of early intervention and continuous support for these patients. Screening tools from the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) can also help identify changes early.

Supporting Mental Health and Depression

Distinguishing between temporary sadness and clinical depression is essential. Both Pam and Craig emphasized the need to assess physical and emotional health together. A sudden withdrawal, for example, could indicate anything from grief to untreated illness.

Therapy and medication may play a role, but so do trauma-informed supports: creating safe environments, building connection, and giving people meaningful choices in their daily lives.

Promoting Health Through Preventive Care

Preventive healthcare remains one of the greatest unmet needs for people with IDD.

Pam urged providers to ensure that aging adults receive routine screenings—such as mammograms, prostate exams, and colonoscopies—that are often overlooked in this population. It is essential to provide timely follow-up to ensure patients complete necessary preventive care and remain engaged in ongoing health management. Supporters must also navigate the risks of polypharmacy: once someone is on five or more medications, the chance of dangerous interactions rises significantly.

Advocates play a vital role in bridging the gap between medical professionals and people with IDD, supporting patients and helping to manage their healthcare needs. Staff who can “translate” complex medical language, track symptoms, and prepare questions for doctors help ensure people get the quality healthcare they deserve.

Ongoing efforts are needed to manage risk factors, late effects, and secondary disorders through continuous medical care and timely intervention, aligning preventive care with World Health Organization guidelines and research-based best practices. The safety of healthcare settings is paramount, and legal acts such as the Act on Guarantee of Right to Health and Access to Medical Services for People with Disabilities help ensure access to medical care for people with IDD.

Housing and Transitions

Affordable housing was another pressing issue discussed in the webinar. Pam explained that some people lose housing support after decades, particularly when HUD-backed arrangements expire. Families and providers must plan early for transitions, always seeking the least restrictive and most person-centered living arrangement possible.

When moves are necessary, familiarity matters. Keeping routines, personal items, and trusted staff in place can soften the disruption and preserve a sense of stability.

Coping with Loss

As people with IDD age, loss becomes a recurring reality—whether it is the passing of parents, peers, or longtime staff.

Friendship development programs and reminiscence activities can provide vital comfort and continuity. Equally important is giving people the opportunity to grieve openly, with the same compassion and validation anyone else would receive.

Takeaways for Supporters

The conversation closed with practical reminders for families, staff, and providers:

Be proactive. Don’t wait for crises. Focus on prevention, screenings, and healthy routines.
Support identity. Help people maintain meaningful roles and relationships, and encourage them to participate actively in their communities and decision-making.
Build friendships. Encourage connections that protect against isolation.
Advocate for healthcare. Ensure providers understand the unique needs of people with IDD.
Meet people where they are. Individualized support makes the biggest difference.

Conclusion

Aging is a universal experience, but for people with IDD, it comes with added challenges, often compounded by limited resources and systemic barriers. Yet as Pam Merkle and Dr. Craig Escudé emphasized, with the right supports in place, people with IDD can age with dignity, health, and fulfillment.

Their message is clear: the best outcomes come from proactive, person-centered strategies that honor identity, strengthen community, and ensure access to quality healthcare.

For more resources, including practical guides and healthcare spending in IDD, visit IntellectAbility’s website or explore the full IDD Perspectives webinar series.

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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.

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.

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.

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.

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.

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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.

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.

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.

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.

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

What happened in this situation?

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

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

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

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

New Tool Determines Health Risks of Social Interactions for People with IDD

As social isolation measures continue, people who live with IDD are more likely to experience serious problems like loneliness or even abuse or neglect. A new tool from Health Risk Screening, Inc. helps weigh the benefits of social interaction vs. the risks of COVID-19 exposure for these individuals.

(Clearwater, FL) January 12, 2021—Research shows that people who live with intellectual or developmental disabilities (IDD) are up to three times more likely to die from COVID-19 and its complications when compared to people without IDD.⁽¹⁾ Those living with IDDs are more likely to live in group home settings and are often more reliant on support givers for help with activities of daily living. But these people, and the people who support them, have been subject to the same social distancing and isolation recommendations as the general population. Unfortunately, this disruption to the norm does more than interrupt routines and hinder personal growth and development—it also places individuals with IDD at greater risk of serious issues like abuse or neglect.⁽²⁾

Dr. Craig Escudé, President of Health Risk Screening, Inc., says, “The pandemic disproportionately affects people who live with IDD, making them more vulnerable to problems like loneliness and disruptions in services providing educational or therapeutic support. There must be a way to help decide whether it’s appropriate for people with IDD to continue on with certain social activities connecting them with others which helps reduce risks of isolation, depression and anxiety associated with limited social contact.”

Like most Americans, people with IDD are socially distancing, avoiding activities once enjoyed away from their homes. The reasons why are multifactorial:⁽³⁾

People living with IDD are more likely to have underlying medical conditions, such as chronic lung disease,
They often rely on various support givers for help with activities of daily living,
Standard safety precautions and preventative measures may not be understood, and
They may not be able to verbally communicate to others symptoms of illness.

But this massive disruption in health, home, and community services is already having profound effects on the estimated 7 million people in the United States who live with IDD.⁽⁴⁾Some studies show up to 70% of people living with IDD have lost at least some of their normal health services as a result of COVID-19, and as many as 74% have lost one or more services entirely.⁽⁴⁾

Many of these services, such as special education programs for youths with IDD, rely on interpersonal relationships between the youth support givers, who may help with physical positioning, toileting, feeding, among other needs.⁽⁵⁾ Often, these same support givers are essential for helping prevent infection among people with IDD.⁽⁶⁾ When these relationships are severed, people living with IDD may fall further behind academically, or they may suffer from regressive behavioral changes related to the loss of a structured daily routine.⁽⁵⁾

According to Dr. Escudé, support givers and family members need a tool to help weigh the benefits and risks of a person living with IDD returning to normal activities. HRS developed such a tool, called the Risk/Benefit Return to Activity Form, to help guide supporters in such decisions.

The Risk/Benefit Return to Activity Form addresses several key areas of risk, such as personal, situational, and health risks, to help determine whether the benefits of attending a certain activity outweigh the potential harm. Each section of the form includes questions such as:

Can the person follow the social distancing protocol of remaining 6 feet away from others independently?
Is the level of community spread in the location of the activity considered reasonable by health authorities?
Does the person have any immunocompromising conditions?

The benefits are also weighed with questions like:

Is socialization important to help manage or improve the person’s anxiety, mood, mental status, behavior, or mental health disorder?
Does the person earn a wage when participating in this activity?

Support personnel who complete this form as part of team meetings can then share it with primary decision-makers to come to a consensus as to whether or not the person with IDD should participate. The form is available to download for anyone who regularly cares for a person with IDD.

Dr. Escudé says, “Just like others, people who live with IDD enjoy social activities which enrich and enhance their lives. Our tool can help those who support people with IDD decide whether the benefits of such activities outweigh the risks of potential exposure to COVID-19.”

Sources

Rabin, Roni Caryn. “Developmental Disabilities Heighten Risk of Covid Death.” The New York Times, The New York Times, 10 Nov. 2020, nytimes.com/2020/11/10/health/covid-developmental-disabilities.html.
King, Dianne. “Risks for Harm Skyrocket for People with Disabilities during Pandemic.” The SAFE Alliance, 28 May 2020, safeaustin.org/risks-for-harm-skyrocket-for-people-with-disabilities-during-pandemic/.
“People with Disabilities.” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, Sept. 2020, cdc.gov/coronavirus/2019-ncov/need-extra-precautions/people-with-disabilities.html.
State of the Science on COVID-19 and People with IDD. 2020, aaidd.org/docs/default-source/publication/state-of-the-science-on-covid-19-and-people-with-idd—dec-2020.pdf?sfvrsn=25893421_0.
Constantino, John N., et al. “The Impact of COVID-19 on Individuals With Intellectual and Developmental Disabilities: Clinical and Scientific Priorities.” American Journal of Psychiatry, 28 Aug. 2020, ajp.psychiatryonline.org/doi/10.1176/appi.ajp.2020.20060780.
“People with Intellectual and Developmental Disabilities Disproportionately Affected by COVID-19.” National Institutes of Health, U.S. Department of Health and Human Services, 28 Aug. 2020, nih.gov/news-events/news-releases/people-intellectual-developmental-disabilities-disproportionately-affected-covid-19.

Government Study Using the HRST

Two separate, independent studies have been completed reviewing the Health Risk Screening Tool (HRST) to both mortality trends and life expectancy trends. Both studies support a correlation between the HRST Health Care Level and mortality dynamics.

One of the independent studies is an ongoing examination being conducted by the Georgia Department of Behavioral Health and Developmental Disabilities (DBHDD).

Georgia DBHDD has used the HRST as a frame of reference for the last five years in the Department’s annual Mortality Reports. Each year the correlation between health risk score and mortality has remained consistent.

The primary results of the GA DBHDD analyses indicate two main points. First, models for 2013 to 2017 are very similar in that age and health risk scores were the two main predictors of death (and not gender or residential setting.) Second, the model indicates possible opportunities to identify risk of death associated with age and HRST scores and to determine additional services, supports or actions needed.

Not only can you adjust resources to mitigate risk, but coordinate and design specific programs for people identified as presenting high risk in a range of areas.

The question remains “Now that we know this, what can we do with the information?” Not only can you adjust resources to mitigate risk, but coordinate and design specific programs for people identified as presenting high risk in a range of areas. This could help with training direct support staff and designing targeted interventions.

This research and its potential impact on preventable deaths among those with I/DD is only the beginning! This could have powerful implications for health and safety of high risk individuals with disabilities, informing system-wide improvements in both surveillance and response to risk. Imagine if these efforts could lead to I/DD mortality rates that are similar to the general population. This data challenges us to envision a future for those with I/DD that is much different than in the past – a future where the standard is a healthy, well-lived life!

Get the full 2017 mortality report: GA Annual Mortality Report (PDF).

Can the HRST Predict Life Expectancy?

In 2015 a study was done by Georgia’s Department of Behavioral Health and Developmental Disabilities (DBHDD) on mortality, mortality trends, and related information to the health and care received by people by the Georgia DBHDD. What was needed was a straight-forward, usable measure of health condition and health risk. ICD codes were too complex and hard to use.

GA’s DBHDD is a long-time user of the Health Risk Screening Tool (HRST.) They decided to use the HRST data as a measure of health risk to model mortality. What they found was that it was not residential setting, gender or part of the country that was associated with mortality but rather the two main predictors of death were:

Age
HRST Health Risk Scores

Gwendell Gravitt, Jr, Director of Office of Performance Analysis, Division of Performance Management & Quality Improvement for DBHDD and Catherine Ivy, Director of Community Services, Division of Intellectual and Developmental Disabilities for DBHDD presented their incredible report findings at the 141st American Association on Intellectual and Developmental Disabilities (AAIDD) annual meeting.

The goal was not just to get information but to use it to make system improvements to quality of care.

Their presentation, called “Understanding Mortality Risk in Order to Prevent it”, specifically featured the Health Risk Screening Tool and how the scores arrived with its use were used in their study. The goal was not just to get information but to use it to make system improvements to quality of care. They were able to do just that…

Mr. Gravitt and Ms. Ivy will be presenting their updated 2016 report at the Home and Community Based Services Conference in Baltimore, MD this August. Their new report will show how they were able to use the information in the 2015 report to reach their goal.

The study is being updated to include the 2016 data and it will be presented at the HCBS conference in Baltimore, August 30th, 8:30 AM.

To see the complete 2015 report, click here.