IntellectAbility’s Innovative Program in IDD Healthcare Addresses Needs


2022 Rick Guidotti, Positive Exposure. All rights reserved.

People with intellectual disabilities have the right to quality medical care that goes beyond intellectual disability services. When providers misinterpret and misdiagnose symptoms, serious health problems may go untreated.

According to a recent Sentinel Event Alert from the Joint Commission, medical providers engage in diagnostic eclipse when treating patients with existing disabilities. Providers are likely to overlook medical issues because they assume the symptoms are related to the person’s intellectual/developmental disability (IDD). They may not perform proper diagnostic tests to check for treatable conditions. Failure to diagnose and treat underlying health conditions puts people with DID at risk.

“People with intellectual disabilities have the right to quality medical care that goes beyond intellectual disability services. When providers misinterpret and misdiagnose symptoms, serious health issues can go untreated,” says Dr. Craig Escudé, MD and President of IntellectAbility. “It is essential that any healthcare provider working in a clinical setting understands how to interact with people of all abilities and their caregivers. We commend the Joint Commission for raising awareness of the need for expanded training in this area. »

Misdiagnosis or lack of diagnosis can lead to quantifiable damage. In some cases, people with IDD are prescribed psychotropic medications to treat behaviors that are simply attributed to the person’s disability rather than looking for the root cause which may be a physical condition such as a dental abscess or gastrointestinal problem. The delay in proper diagnosis and treatment worsens the physical condition while exposing the person to unnecessary drugs.

In its investigation of diagnostic eclipse, the Joint Commission found that up to one-third of American physicians are unaware of the legal requirements under the Americans with Disabilities Act (ADA). Most US medical schools do not provide health care skills training for people with disabilities, leaving doctors with limited opportunities to learn best practices for working with patients who have diagnoses of IDD. In response, the Joint Commission calls for better “awareness of diagnostic eclipse during clinical peer reviews and quality assurance and by addressing it in training and education programs.”

The Joint Commission has outlined clear actions that healthcare providers can take to mitigate diagnostic eclipse in their practices. IntellectAbility innovations are aligned with JC recommendations:

Recommendation: Create awareness of diagnostic eclipse in clinical peer reviews and quality assurance by addressing it in training and education programs.

The IntellectAbility in IDD Healthcare (CIDDH) curriculum includes a section specifically designed to teach health professions students and practicing clinicians how to “unlock the language of behavior”. The training emphasizes how a thorough assessment of behavioral or psychiatric symptoms can lead to the diagnosis and treatment of underlying medical conditions.

Recommendation: Use listening and interviewing techniques designed to achieve better patient engagement and shared decision-making.

IntellectAbility’s CIDDH provides concrete recommendations for directly and actively involving people with IDD in managing their health. CIDDH specifically includes effective communication strategies to support people who cannot communicate using words. The training also emphasizes the key role of caregivers and family members during the diagnosis and treatment process.

Recommendation: Collect and aggregate data on pre-existing conditions and disabilities and create electronic health record (EHR) prompts for clinicians.

IntellectAbility’s Health Risk Screener is a well-established and reliable web-based tool that detects health destabilization and contains a wide range of data that informs about the person’s level of health risk. The HRST aggregates data on a person’s medications, medical conditions, and other key health-related information and is interoperable with other IT/EHR and case management systems.

When a health risk is identified, HRST provides “service considerations” to providers. For example, the tool can suggest a gastrointestinal consultation and appropriate follow-up for someone at risk for severe constipation or bowel obstruction.

The HRST also includes information about the signs a particular person might be expressing with the onset of a known condition. The person’s story would show the behaviors they exhibited during previous health episodes, offering providers insight into what those behaviors might mean clinically.

Recommendation: Use an intersectional framework when assessing patients in groups prone to diagnostic eclipse to overcome cognitive biases and look beyond prior diagnoses.

IntellectAbility’s Healthcare for IDD Curriculum begins with an in-depth discussion of health equity for people with IDD. CIDDH responds to the need for clinicians to develop IDD-related healthcare skills to overcome “unconscious biases” about a person’s quality of life when making treatment decisions for people with IDD. D.I.D. Diagnostic overshadowing can be detrimental to the quality of care and can contribute to delayed diagnosis and treatment, unnecessary or unsafe care, and inequities in care.

Both IntellectAbility and The Joint Commission recognize that diagnostic eclipse is a phenomenon that arises from correctable cognitive bias. Appropriate awareness and training are crucial for clinicians seeking to overcome cognitive biases.

“The shift to a person-centered model of medical care makes sense,” says Dr. Escudé. “As the Joint Commission recognizes, when providers set aside biases and assumptions, they can listen to patients more effectively and therefore treat them more effectively. At IntellectAbility, we have decades of experience teaching person-centered methods to clinicians and caregivers who work in intellectual and developmental disabilities services. Our programs can help medical providers learn the skills required in The Joint Commission Sentinel Event Alert.

For more information on IntellectAbility, visit their website at https://www.replacingrisk.com/

About IntellectAbility

IntellectAbility provides tools and training to agencies, government entities and supports for people with intellectual and developmental disabilities (IDD) to promote early recognition and mitigation of health risks, thereby improving health and well- be. One such tool is the Health Risk Screening Tool (HRST), of which they are the sole developer, producer and distributor. The online HRST is the most widely used and validated health risk screening instrument for people with intellectual and developmental disabilities.

The Curriculum in IDD Healthcare (CIDDH) was created by Dr. Craig Escude, a physician specializing in developmental medicine, to serve as a comprehensive six-module online IDD training program for physicians, nurse practitioners, nurses and assistants medical. The program focuses on relevant and practical information that can be used immediately in practice to increase providers’ skills in IDD-related health care and improve outcomes for people with IDD. Upon completion, 5 CME and/or 6 CEU nursing credit hours are awarded.

IntellectAbility also offers many health-related and person-centered service trainings for people who support people with IDD. With relentless focus, IntellectAbility strives to fulfill its mission to improve the health and quality of life of people with intellectual and developmental disabilities and other at-risk populations. For more information visit http://www.ReplacingRisk.com

1. Gleason, Ross, Fossi, Blonsky, Tobias, Stephens. The devastating impact of Covid-19 on people with developmental disabilities in the United States. NEJM innovations in care delivery. March 2021.

2. Iezzoni LI, et al. American Physicians’ Knowledge of the Americans with Disability Act and the Accommodation of Disabled Patients. Health Affairs, Jan. 2022.

3. National Disability Council. Policy framework. Health Equity Framework for Persons with Disabilities. February 2022.

4. The Mixed Commission. Diagnostic concealment among groups experiencing health disparities. June 2022.

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