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:

  1. Ensure health care providers receive education to ensure they are disability healthcare competent
  2. Effectively monitor, identify, and address emerging health risks
  3. 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

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.”




  1. Rabin, Roni Caryn. “Developmental Disabilities Heighten Risk of Covid Death.” The New York Times, The New York Times, 10 Nov. 2020,
  2. King, Dianne. “Risks for Harm Skyrocket for People with Disabilities during Pandemic.” The SAFE Alliance, 28 May 2020,
  3. “People with Disabilities.” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, Sept. 2020,
  4. State of the Science on COVID-19 and People with IDD. 2020,—dec-2020.pdf?sfvrsn=25893421_0.
  5. 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,
  6. “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,

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:

  1. Age
  2. 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.