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One afternoon, Sophia appeared more withdrawn than usual and refused to eat.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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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.

Who knows best what’s right for me? Me or You?

DISCERNING THE PROPER BALANCE BETWEEN WHAT IS IMPORTANT FOR A PERSON AND WHAT IS IMPORTANT TO A PERSON    |   6 MIN READ

By Dr. Craig Escudé, MD, FAAFP, FAADM
Published by Helen: The Journal of Human Exceptionality Issue No. 5 – October 2022, pg 36

Who knows best what’s right for me? Me or You? The answer is likely both, depending on the situation. If I’m looking for a job that is fulfilling to me, while I might listen to suggestions from others, I’m really the best person to make that decision. If I’m trying to decide if the degree of heart blockage I have is best treated with medications or surgery, I’ll be listening to the cardiologist for that one, for sure. Abilities and support for decision-making of people differ immensely, and with that comes varying capacities to make what most might consider “good” choices in life. Person-centered support is about helping discern the proper balance between what is important FOR a person and what is important TO a person.

For people with IDD who are receiving supports and services, at least in my experience, the type of support provided is usually more heavily weighted on what is important FOR the person, leaving less room for the person to be able to make decisions and choices in their own lives that are important TO them that will help them lead more fulfilling lives. It’s often easy to understand why, especially in the name of keeping people safe. But an interesting finding published by the Council on Quality and Leadership in 2019 showed that when people have more meaningful work and activity choices in their lives, the number of “challenging behaviors” goes down by a whopping 74 percent. When we have the ability and choice to do things that are important TO each of us, we are more likely to be content with our lives and less likely to be agitated by having to do mostly what others think is right for us. It just makes sense.

Examples of things that we might consider to be “Important FOR” someone include: not smoking, eating healthy, exercising, finding gainful employment, safe driving skills, regular health check-ups, and the like.

Examples of things that fit into the “Important TO” a person category include: choices relating to what they like to eat, where they want to work, what friends they enjoy the company of, what hobbies they prefer, and even the color their room is painted.

Sometimes there are choices that are made that may be important TO someone that are clearly not best FOR them. Smoking, excessive alcohol use, and never exercising are a few examples of these. But many people, with or without disabilities, make choices that are not always best FOR them.

How do we balance supporting people with IDD to do what is good FOR them while supporting their right to make choices for themselves that may not be best FOR them?

Guess what? If this has been a struggle for you as a parent, family member, or employed supporter of a person with IDD, there are actual skills you can learn to help give a person positive control over their lives while assisting them in maintaining a safe lifestyle.

By participating in formal person-centered thinking training, people can learn skills to help them balance safety with choice, protection with freedom, and security with autonomy when supporting people with IDD. Even for people who might communicate in ways other than using words, there are  Person-Centered Thinking skillsets that can be learned that can help supporters identify what brings someone joy in their life.

Skills such as…

  • Good Day/Bad Day and the Rituals and Routines help one discover what brings meaning to a person’s life in a way that works much better than just making a simple list.
  • The Donut skill helps one to maintain focus, clarify expectations, and establish boundaries.
  • The Relationship Map skill helps to identify what relationships are of the most value to a person.
  • The Learning Log skill helps keep track of data whenever a person has a new experience.
  • And the 4+1 is a person-centered skill that captures four key pieces of information to guide a positive next step when helping a person problem-solve.

Person-Centered Thinking skills help those who provide support understand their roles and responsibilities to keep people moving in a direction that is more autonomous and important TO them without sacrificing what is important FOR them, like safety, security, and health.

Visit our Person-Centered Thinking Training Schedule webpage to learn more about person-centered thinking and find a class that fits your schedule. It might be just the thing needed to bring balance to life for both people with IDD and those who support them.

 

Person-Centered Thinking

CMS’ final rule on Person-Centeredness has created many conversations among those who support people with Intellectual Disabilities (ID). Some center on compliance, paperwork, and measurable outcomes. These, while relevant, miss the spirit.

So, what does it mean to be Person-Centered? Is it about language, or community integration or choice and responsibility? The answer to all, is yes. While Person-Centeredness is a significant shift in how we approach supports, it’s really pretty easy to understand.

The spirit is really about treating people with ID like, well, people.

When we talk about people with disabilities, we still use clinical language even when they aren’t in clinical settings. We say things like, “Stacey has verbally aggressive behaviors, but she is high-functioning. She toilets independently, enjoys outings, needs partial physical support to do math, and requires verbal prompts for personal interaction.” What if we talked about Stacey like we talk about a friend? “Stacy speaks for herself. She is a lot of fun when going out but appreciates a kind reminder to respect others’ space. When making purchases, her friends help her make sure everything’s correct.”

See the difference?

When we think about community integration for people with ID, we often approach it like students on a field trip. While group trips can be fun, what if we also helped a person with ID get and stay connected with a local artist, musician, or baseball coach?

When we think about balancing choice and risks for people with disabilities, we may lose the balance we would ordinarily pursue such as when helping a friend. We may protect people from any risks leading to lives that are safe but are miserable and limit their growth. Or, we may not offer direction, thus putting people at significant risk and sanctioning reckless choices. What if instead we provided direction but not control, to help people make informed decisions, even if those decisions led to mistakes from which they could recover and grow, just like we do for our friends?

No doubt: paperwork will follow, compliance will be required and outcomes will be measured but let’s not forget that Person-Centeredness is about treating people like people, and that is the right thing to do.
And remember, person-centeredness is not just for those with IDD.  It is applicable to anyone who for any reason has lost ownership or positive control over their lives.  This could be because of an acquired disability, accident, the aging process, and so on. When supports are needed from others, person-centered approaches help ensure the person stays in control of their life as much as possible.

Sexuality in People with IDD

February is American Heart Month. It’s the month where red attire is worn on the first Friday to bring awareness to heart disease in women. It’s also the month that includes Valentine’s Day, roses and romance. It’s the Valentine’s Day heart experience that we will talk about in this article.

Many people who have never supported persons with IDD think they are either asexual beings or it is simply wrong for them to have a sexual or romantic relationship. Even some people who support them think that is the way it should be too. After practicing in this field for almost 25 years, I can speak with authority that close friendships, love, romance, sex, marriage and having children do occur.

If a couple can both consent to a sexual relationship, there is nothing that should prohibit them from having a sexual relationship.

People with IDD have the same hormones that their typical peers have. Most generally have the same genitalia. Sexual desire is a natural occurrence related to hormonal stimulation and more than likely they are going to act on those desires and impulses. If a couple can both consent to a sexual relationship, there is nothing that should prohibit them from having a sexual relationship. This relationship can fall under the LGBTQ acronym as well as a heterosexual one. There are a couple of caveats–they both need the capacity to consent, verbally or through other means to show understanding and the couple must be educated on safe sexual practices and freedom from abuse and exploitation.

Sometimes, sexual release is found through masturbation for both males and females. This is OK too if it occurs in an appropriate private area. Knocking on a closed door AND waiting for a response that it is OK to enter, should be the standard for allowing privacy. If masturbation becomes obsessive, this can cause skin damage and a plan needs to be put in place not to stop the masturbation but reduce the incidences.

Relationships are not all sexual, but the couple may engage in hand holding, kissing, hugging or just sitting next to each other on the couch. This type of relationship is just as important as a sexual one. It may be impossible to tell if they love each other or are just happy being together. But, does it really matter? Both people receive caring gestures from someone else and it fulfills the desire to have a close connection with someone other than family.

Marriage and children are in the cards for some people. Counseling is suggested prior to marriage, so both go in with their eyes open and knowing what to expect. What if the marriage is not successful? Well, doesn’t that happen in many of their neurotypical peers as well? If having children is being considered, genetic testing is recommended in order to determine the types of genetic syndromes that may be passed on to the child.

Relationships are important in everyone’s life. Relationships can come in many shapes and sizes and one size does not fit all. It’s not “cute” or “precious” or “adorable,” it is two people finding someone that they can connect with in the way that fits them. It doesn’t matter if you are listening to your heart thump for health or thump for someone important, remember during American Heart Month that both are important.