Karen Green McGowan, Founder of IntellectAbility, Passes Away Leaving Behind Legacy of Advocacy and Education

Karen Green McGowan, Founder of IntellectAbility, Passes Away Leaving Behind Legacy of Advocacy and EducationKaren Green McGowan

IntellectAbility continues Karen McGowan’s legacy of improving the health and well-being of people with intellectual and developmental disabilities.

She was a friend, a mentor, and the heart of our mission. Her legacy lives on in the work we do, and we’ll carry it forward with the same heart and purpose that guided her every day.”
— Dr. Craig Escudé, President of IntellectAbility

CLEARWATER, FL, UNITED STATES, April 9, 2025 /EINPresswire.com/ — Karen Green McGowan, Founder of IntellectAbility, former President of the Developmental Disabilities Nurses Association, and lifetime advocate for people with intellectual and developmental disabilities (IDD), passed away on April 2, 2025, at the age of 84. McGowan was a visionary whose work transformed the field of IDD supports and services.

Karen McGowan began her career in healthcare in 1962 as a labor and delivery nurse at Mailstrom Air Force Base in Montana. She helped deliver hundreds of babies at Mailstrom before marrying in 1965 and moving back to her home state of Iowa. Soon after, she accepted a position at Glenwood State Hospital School, an institution for people with severe intellectual disabilities.

McGowan’s mentors had cautioned her about working at Glenwood, where overcrowding, neglect, and extremely high mortality rates were the norm. Their concerns reflected the stark reality of the time. People with disabilities were often devalued, and the field was seen as a professional dead end.

But McGowan saw it as an opportunity to create positive change and make a difference in patients’ lives. Recognizing the need for better education and training in the field, Karen became deeply invested in equipping others with the knowledge to provide quality care. She authored numerous training manuals for clinicians on the physical and nutritional management of people with disabilities, filling a critical gap in available resources.

Driven by her passion for education, McGowan became an independent clinical nurse consultant in 1977. As a consultant, Karen provided technical assistance to more than 40 states and nine Canadian provinces. She also consulted internationally with Disability Rights International, assessing care conditions in Romania, Serbia, the Republic of Georgia, Mexico, and Ukraine.


In 1992, while consulting on the transition of 240 people from institutions to community settings, Karen was asked to develop a way to determine which of them required specialized care. She assembled a team of innovative nurses to create an effective solution using key health indicators such as eating ability and mobility. The result was the Health Risk Screening Tool (HRST), a 22-item screening tool that evaluates risks in critical areas.

As demand for the HRST and educational resources grew, Karen founded IntellectAbility, formerly known as Health Risk Screening, Inc., an organization dedicated to equipping supporters, clinicians, and administrators with tools and training to improve health outcomes for people with disabilities.

Central to the organization’s approach was Karen’s commitment to Person-Centered Planning and Person-Centered Thinking, which emphasize the importance of tailoring support to each person’s unique needs, preferences, and aspirations. Now an industry leader, the HRST has transformed how health risks are identified and managed, ensuring people with IDD receive the care and support they need to thrive.

In line with her commitment to reducing risk, Karen played a key role in popularizing the term Fatal Five – a phrase used to highlight the most preventable causes of death among people with IDD. Building on the previously recognized Fatal Four, she added sepsis and later gastroesophageal reflux disease (GERD) to the original list, which included aspiration, constipation, dehydration, and seizures. By equipping supporters with critical knowledge to recognize and respond to these risks, Karen helped establish terminology and awareness that continue to shape best practices in the IDD field today.


“We are deeply saddened by the passing of our founder. Her vision, compassion, and unwavering dedication to people with intellectual and developmental disabilities built the foundation of IntellectAbility,” said Dr. Craig Escudé, President of IntellectAbility. “Karen was more than a leader — she was a friend, a mentor, and the heart of our mission. Her legacy lives on in the work we do, and we’ll carry it forward with the same heart and purpose that guided her every day.”

IntellectAbility provides tools and training to agencies, governmental entities, and supporters of people with intellectual and developmental disabilities to foster early recognition and mitigation of health risks, thereby improving health and wellness. One such tool is the Health Risk Screening Tool (HRST), of which they are the sole developer, producer, and distributor. The web-based HRST is the most widely used and validated health risk screening instrument for people with intellectual and developmental disabilities. IntellectAbility also provides numerous health-related and person-centered service training for supporters of people with IDD. With an unrelenting focus, IntellectAbility works to fulfill its mission of improving health and quality of life for people with intellectual and developmental disabilities and other at-risk populations. For more information, visit www.ReplacingRisk.com

Daniel Mutter
MutterWorks
+1 305-926-1792
daniel@mutterworks.com

Tools to Assess Emotional Well-Being for People with Intellectual Disabilities are Lacking, New Study Finds

Tools to Assess Emotional Well-Being for People with Intellectual Disabilities are Lacking, New Study Finds

Specialized training and tools are required to improve emotional well-being and the overall health of people with intellectual and developmental disabilities.

It’s known that emotional stressors can lead to increased risk for heart disease, poorer glucose control for people with diabetes, and early death.”

— Dr. Craig Escudé, President of IntellectAbility
CLEARWATER, FL, UNITED STATES, March 25, 2025 /EINPresswire.com/ — A newly released study published by researchers at the University of Connecticut found significant gaps in assessing the emotional well-being of children and adolescents with intellectual disabilities. Researchers noted few measures exist to assess the emotional well-being of those with severe or profound intellectual disabilities.

According to the study, emotional well-being has been connected to positive social, emotional, behavioral, and health outcomes for people with intellectual disabilities. Those with higher levels of emotional well-being are more likely to participate in fulfilling activities, cultivate meaningful relationships, and have stronger feelings of inclusion. Emotional well-being may also encourage resilience. (1)

While emotional well-being is an integral part of improving overall physical and mental health, the available tools and metrics are typically developed for people without disabilities. Individuals with intellectual and developmental disabilities (IDD) who experience higher mortality rates than non-disabled individuals continue to suffer disproportionately from unrecognized and underdiagnosed emotional distress.

People living with IDD express emotional well-being differently than those without disabilities. For example, many people with IDD do not use words to communicate, which makes it difficult to simply ask, “How are you feeling?” As a result, physicians and supporters must develop more customized parameters to examine signs of emotional instability.

“For people with IDD, early signs of emotional distress may appear as a prolonged change in a person’s demeanor, significant changes in behavior, or a notable change in a person’s baseline level of interaction with others,” states Dr. Craig Escudé, President of IntellectAbility. “Being attuned to identifying these changes is essential for family members and supporters to recognize and report these changes so that interventions can be implemented early.”

IntellectAbility provides tools and training to agencies, governmental entities, and supporters of people with IDD to foster early recognition and mitigation of health risks. By providing person-centered training, IntellectAbility helps caregivers and physicians empower people with IDD to live healthier, more fulfilling lives.

Emotional distress can lead to serious and often deadly health issues for people with IDD. “It’s known that emotional stressors can lead to increased risk for heart disease, poorer glucose control for people with diabetes, and early death. Stress also can worsen the risks for obesity, Alzheimer’s disease, depression, and gastrointestinal problems,” states Dr. Escudé.

For many people with IDD, signs of stress are exhibited by changes in behavior. IntellectAbility developed the Health Risk Screening Tool (HRST) to better assess health destabilization in people with IDD. The tool looks at 22 specific areas of risk, including five that specifically relate to behavior: self-abuse, aggression, the need for physical behavior support, chemical behavior support, and the use of psychotropic medications.

Dr. Escudé notes, “One’s overall emotional state heavily influences their overall quality of life. For people with IDD who are already subject to social isolation, higher rates of mental health issues, and increased numbers of chronic diseases, implementing interventions to improve overall emotional well-being is exceedingly important. And, it starts with having an effective way to screen for it.”

IntellectAbility provides tools and training to agencies, governmental entities, and supporters of people with intellectual and developmental disabilities to foster early recognition and mitigation of health risks, thereby improving health and wellness. One such tool is the Health Risk Screening Tool (HRST), of which they are the sole developer, producer, and distributor. The web-based HRST is the most widely used and validated health risk screening instrument for people with intellectual and developmental disabilities. IntellectAbility also provides numerous health-related and person-centered service training for supporters of people with IDD. With an unrelenting focus, IntellectAbility works to fulfill its mission of improving health and quality of life for people with intellectual and developmental disabilities and other at-risk populations. For more information, visit www.ReplacingRisk.com

Sources:

1. https://today.uconn.edu/2025/03/new-study-finds-gap-in-tools-assessing-emotional-well-being-in-individuals-with-intellectual-disabilities/

5 Minutes in Healthcare – Featuring Dr. Craig Escudé

5 Minutes in Healthcare – Featuring Dr. Craig Escudé

Healthcare Business, November 2020

5 Minutes in Healthcare
5 Minutes in Healthcare

Five Minutes in Healthcare is where I discuss current events with some of the industry’s most influential leaders, as well as innovative thinkers who are working to meet the challenges of the novel coronavirus.

In this installment, I check in with Dr. Craig Escudé, president of Health Risk Screening, about the challenges of providing care to individuals with an intellectual or developmental disability (IDD) and how new tools can support those efforts. Recognizing the needs of patients with IDDs is especially important during COVID-19.

Click here to watch the interview.

About Phil Jacobus

Phil Jacobus has been involved in health care since 1977, when he visited China to sell equipment. He has done business in 35 countries and still travels extensively. Phil is active in charity, helps rural clinics and always tries to help DOTmed users when he can.

Phil is a founding member of IAMERS and a member of AHRA, HFMA, AAMI and the Cryogenic Society of America. He has contributed to a number of magazines and journals and has addressed trade groups.

Phil’s proudest achievement is that he has been happily married to his wife Barbara since 1989, who helped him found DOTmed in 1998.

NC Healthcare Workers Address Disability Nutrition Gap

Western NC Healthcare Workers Aim to Bridge Nutritional Gap for People With Disabilities

by: 

Originally Aired and Published February 24, 2025

ARDEN, N.C. (WSPA) – A western North Carolina organization is on a mission to improve healthcare for people with disabilities across the Carolinas beginning with what they eat.

Dr. Craig Escude is the president of IntellectAbility. It’s an online tool that helps caregivers and healthcare providers meet the nutritional needs of someone with disabilities.

“For people with intellectual disabilities, many people have swallowing problems as well, so even if they can have access to healthy foods, they may still be at risk because of swallowing trouble that can cause aspiration and can result in hospitalization, or even unnecessary and preventable deaths,” said Escude.

Escude said the IntellectAbility courses can be one to four hours long. He explained they offer interactive training in how to recognize the signs a person with disabilities is struggling with malnutrition and other health issues. According to Escude, one in three families of adults with disabilities experience food insecurity. He said those conditions are often misdiagnosed.

“People who have intellectual disabilities typically have more challenges in finding gainful employment,” Escude added. “And in receiving and retaining higher educational levels, and all of this impacts their ability to be able to have purchasing power; to purchase healthier foods, and good foods that can improve their overall health.”

Escude went on to say those who are interested in taking IntellectAbility courses can reach out to the South Carolina Department of Disabilities and Special Needs for access.

Originally published on WSPA 7 

Watch 2 minute interview here.

New Study: Food Insecurity Greatly Affects Missourian IDD Families

New Study Reports Food Insecurity Greatly affects Missourians with Disabled Family Members

Originally Aired and Published February 26, 2025

In Missouri, one in every seven households is left hungry. United States Department of Agriculture (USDA) Economic Research Service found that nearly one-third of American households with a disabled adult family member experience low food security. Dr. Craig Escude, a family physician and specialist in intellectually and developmentally disabled individuals reported an increased likelihood of these factors in Missouri.

“Around a million people in Missouri are affected by food insecurity. The recently released study showed that people with a family member with a disability, that includes those with intellectual and developmental disabilities have about a three times higher risk of experiencing food insecurity,” said Escude.

The inability of disabled individuals and caregivers to maintain steady income as well as medical expenses are factors that directly contribute to the increased risk of food insecurity.

“I have cerebral palsy I’ve had that my whole life, and I’ve had to fight my way through probably harder than everyone else,” said Duane Gruis, an advocate and family navigator for disability service organization, UCP Heartland.

Wednesday brought several other advocates for this cause to the Capitol Rotunda in honor of Disability Rights Legislative Day.

Kevin Litt, of UCP Heartland said these issues can be forgotten because of the lack of visibility of most disabled individuals.

“Some of the side effects is that people don’t see them because they tend to be stuck inside and are not able to get out as often as they like to. So, I think the importance of the advocacy is that we have a huge population in the state of Missouri with disabilities,” said Litt.

Some efforts that were advocated for at the capital included access to Medicaid coverage, state funding for disabled workers who make below minimum wage, and more.

Originally published on KRCG CBS13

Department of Education Changes Could Mean Greater Barriers for Children with Disabilities

Department of Education Changes Could Mean Greater Barriers for Children with Disabilities

Clearwater, February 12, 2025

By Daniel Mutter

A rise in developmental disability diagnoses in children creates greater need for improved special education standards in schools nationwide.

As President Donald Trump prepares to sign an executive order making good on his campaign promise to dismantle the U.S. Department of Education, parents nationwide are growing increasingly concerned about how these changes will affect students with intellectual and developmental disabilities (IDD).

The U.S. Centers for Disease Control and Prevention (CDC) reports that more American children than ever are being diagnosed with developmental disabilities. According to the CDC’s most recent report, close to 9% of children are now diagnosed with a developmental disability. These diagnoses are far more common among boys, as more than 1 in 10 boys ages 3-17 are currently diagnosed with an intellectual disability, autism spectrum disorder, or other developmental delays.

U.S. education programs are currently protected by a federal law known as the Individuals with Disabilities Education Act (IDEA). Originally known as the Education for All Handicapped Children Act and signed into law on November 29, 1975, IDEA states that all students have the right to a free, appropriate public education and schools must provide special education services to all students with qualifying disabilities.

IDEA governs how states and public agencies provide early intervention, special education, and related services to more than 8 million disabled students nationwide. Currently, the Education Department Office of Special Education monitors states for compliance with IDEA and issues reports detailing deficiencies and noncompliance.

Federal oversight is vital to the success of special education programs nationwide, especially as reports of special education teacher shortages continue to rise. According to the U.S. Department of Education, In the 2023-2024 school year, 80 percent of states reported experiencing these shortages.

“Like shortages in special education teachers, there are shortages of direct support professionals (DSPs) and healthcare providers trained to meet the needs of people with intellectual and developmental disabilities (IDD),” says Dr. Craig Escudé, President of IntellectAbility. These supports are instrumental in helping people with disabilities live healthier, more independent lives that they enjoy.”

IntellectAbility provides tools and training to agencies, governmental entities, and supporters of people with intellectual and developmental disabilities to foster early recognition and mitigation of health risks.

“Education tailored to meet individual needs benefits people of all abilities. Some need more help with math, some with English, and some with science. People with IDD need and benefit from specialized education, and when that is not available, it can create a potentially negative impact on their lives and their overall health.”

President Trump’s latest plan includes buyouts for Education Department employees to begin reducing the agency’s size. By eliminating the Department of Education, Trump hopes to place the management of public education in the hands of the states.

IntellectAbility provides tools and training to agencies, governmental entities, and supporters of people with intellectual and developmental disabilities to foster early recognition and mitigation of health risks, thereby improving health and wellness. One such tool is the Health Risk Screening Tool (HRST), of which they are the sole developer, producer, and distributor. The web-based HRST is the most widely used and validated health risk screening instrument for people with intellectual and developmental disabilities. IntellectAbility also provides numerous health-related and person-centered service training for supporters of people with IDD. With an unrelenting focus, IntellectAbility works to fulfill its mission of improving health and quality of life for people with intellectual and developmental disabilities and other at-risk populations.

Author Daniel Mutter can be reached at Daniel (at) mutterworks.com

Published in the EIN Presswire

Serious Gap in Healthcare Services Due to Lack of Training

Serious Gap in Healthcare Services Due to Lack of Training

Originally Aired and Published July 3rd, 2024

The latest numbers from the Centers for Disease Control and Prevention find autism and developmental disabilities on the rise.

A doctor who specializes in this field said people who have IDD, meaning intellectual or developmental disabilities, face a serious gap in healthcare services.

The gap is in the lack of training.

Medical students spend years training to become doctors, but Dr. Craig Escudé said there’s no mandated curriculum on how to spot or communicate with people who are intellectually or developmentally disabled.

“The first thing is awareness, including awareness of health care providers about the need to learn about health care for people with intellectual and developmental disabilities,” Escudé said.

Escudé said healthcare education hasn’t caught up with the rising numbers of IDD diagnoses.

According to the CDC, 1 in 36 children are now diagnosed with autism. One in 6 children are now diagnosed with a developmental disability.

Escudé said that when healthcare providers don’t recognize changes in their behavior, early signs of trouble are often missed.

“This is a term called diagnostic overshadowing, where early signs and symptoms of something are just attributed to the person’s overall condition, such as their intellectual disability. Rather than looking for a treatable underlying condition.” Escudé said.

He said the problem is that medical schools don’t include training on how to identify or communicate with patients who are intellectually or developmentally disabled.

Escudé said, “I can speak from my own personal experience as a family physician. I had no training in medical school or residency about how to provide good health care for people with IDD.”

Escudé said studies show many clinicians feel uncomfortable and incapable of providing the same level of health care for people with disabilities as those without disabilities.

Originally published on WXII News.

IntellectAbility’s New Screening for Social Determinants of Health for People with IDD

IntellectAbility’s New Screening for Social Determinants of Health for People with IDD

By Daleigh Tallent, MSN, RN, CDDN

Research continues to show people with intellectual and developmental disabilities (IDD) are at a high risk for health disparities, including a shorter life expectancy and earlier onset of age-related conditions 1, 2.

People with IDD are also more likely to have heart disease, osteoporosis, and high blood pressure compared to nondisabled people 2. However, these health disparities are not determined solely by the genetic makeup of a person with IDD. Nearly 80% of health outcomes are influenced by non-medical factors, with social determinants of health (SDOH) affecting as much as 50% 3. SDOH includes stable housing, food insecurity and access to nutritious foods, reliable transportation, health care access, safe neighborhoods, and many other socioeconomic aspects.

Why should we be concerned about SDOH?

If you’ve ever supported someone with IDD, you’ve likely encountered at least one of these SDOH challenges:

  • Obtaining accessible, affordable housing in a safe neighborhood
  • Addressing abuse, neglect, or exploitation of a person with IDD
  • Acquiring job placement where the person is paid fairly, can work as many hours as they wish, and has reliable transportation to and from work
  • Finding a school with early identification and intervention programs that effectively utilize individualized education plans (IEPs)
  • Locating quality primary and specialty care in the local community
  • Receiving health care from a provider who values the life of a person with IDD just as much as you do

These barriers can result in disparities that negatively impact a person’s functioning, social well-being, and overall health.

Health disparities and unmet SDOH can also lead to untimely death. This became starkly evident during the COVID-19 pandemic when people with IDD were often sent home from the emergency department when hospital resources were scarce or prevented from using their personal ventilators after being admitted 4.

Aren’t we already addressing SDOH?

Yes! Managing SDOH, such as housing, transportation, employment, and social integration, is not new to the field of IDD; it has been a core concept of IDD supports and services for over 40 years and resulted in increased life expectancy 5.

But! People with IDD and their supporters may have little to no control over systemic issues like inflation, infrastructure, and policies that impact socioeconomic status. They also face barriers within their very own communities including disability bias, diagnostic overshadowing, ableism, stigma, and discrimination. Confronting these multilevel social challenges requires time, money, and resources, which many IDD supporters do not have.

What can we do today to tackle unmet SDOH?

IDD support teams do not have to wait on public health system changes to see improvement in health outcomes and happiness for those they serve; we can start addressing SDOH today on an individual basis by Asking, Screening, and Advocating.

Ask

Meet with the person and ask them about their life, ambitions, and social needs. What’s important to them? What is preventing them from achieving their personal goals? Asking about SDOH often uncovers past or current trauma. It’s important for supporters to understand this and be able to respond appropriately.

 

Screen

Adopt a routine screening process for the identification of any SDOH barriers. Completing a social needs screening is generally not required by healthcare providers, so if you’re not screening in-house, social risks may be going unnoticed. SDOH screenings do not have to be completed by clinicians and should be done at regular intervals to identify any trends.

There are several free screening tools that already exist including the Protocol for Responding to and Assessing Patients’ Assets, Risks and Experiences (PRAPARE) and the American Academy of Family Physicians (AAFP) Social Needs Screening Tool 6,7. IntellectAbility has created the first screening tool specifically for people with IDD, which can be downloaded here.

Advocate

Connect the person with community-based organizations and resources. The website findhelp.org (formerly known as Aunt Bertha) helps people easily locate and access social services in their local area 8. Develop a person-centered plan for addressing immediate, short-term, and long-term SDOH concerns. Provide ongoing support and encouragement to the person and their support team.

Due to the intimate nature of this field, IDD supports and services are well-positioned to identify unmet SDOH for our population. Focused efforts have increased longevity for people with IDD, but there’s still work to be done to minimize dangerous health disparities and inequities. Tools and resources are available today to help you create and implement steps to address SDOH. Just by asking, screening, and advocating, you can improve health outcomes and happiness for those you support.

 

Sources

  1. https://ncd.gov/publications/2022/health-equity-framework
  2. https://www.c-q-l.org/wp-content/uploads/2021/07/CQL-Research-2020-SDOH-outcomes-ER-IDD-Friedman.pdf
  3. https://aspe.hhs.gov/sites/default/files/documents/e2b650cd64cf84aae8ff0fae7474af82/SDOH-Evidence-Review.pdf
  4. https://www.ncd.gov/report/an-extra/
  5. https://behavioralhealthnews.org/using-social-determinants-of-health-for-the-field-of-intellectual-and-developmental-disabilities/
  6. https://prapare.org/the-prapare-screening-tool/
  7. https://www.aafp.org/dam/AAFP/documents/patient_care/everyone_project/hops19-physician-form-sdoh.pdf
  8. https://www.findhelp.org/

Federal Proposal Prohibits Healthcare Discrimination Based on a Person’s Disability

Federal Proposal Prohibits Healthcare Discrimination Based on a Person’s Disability

By: McKenzie Richmond, KTUL Staff

Published: April 18th, 2024 at 2:24pm 

TULSA, Okla. (KTUL) — A proposed amendment to Section 504 of the 1973 Rehabilitation Act aims to help eliminate healthcare discrimination for those living with intellectual and developmental disabilities (IDD).

The amendment will prohibit discrimination based on a person’s disability.

The language will clarify obligations that our health systems must meet to achieve equitable healthcare for patients.

Right now, medical experts say a lack of IDD training and inherent bias continue to lead to significant health disparities for people with disabilities.

“There is evidence to show they have lower rates of preventive health screenings,” Dr. Craig Escudé, family physician and president of IntellectAbility, said. “People with intellectual disabilities have a 2.5 times increase in risk of dying from cancer. We know that people with IDD die at a younger age than people without intellectual and developmental disabilities and the thing is it’s not usually attributed to the fact they have IDD itself.”

A vital step to improve healthcare outcomes for people with IDD is increasing training.

“We know medical schools, nursing schools, most health care professional skills are lacking in training clinicians to meet the healthcare needs of people with intellectual and developmental disabilities,” Escudé said. “That leads to biases. That leads to assumptions that are made that people with IDD have a lower quality of life. That leads to health disparities and deprioritization.”

“I learned very quickly how ill-prepared I was to treat patients with IDD,” Escudé said.

The proposed rule highlights the need for more training, emphasizing the importance for clinicians to learn the different ways patients with IDD may communicate their symptoms, so healthcare workers can make more accurate clinical diagnoses and provide better treatment.

“They may not be able to say, ‘My tooth is hurting, I need to go to the dentist’,” Escudé said. “What they may do is hit themselves in the face because it hurts right there or hit their head on the wall.”

Beyond education, the rule change calls for accessible medical equipment.

“If a person can’t have access to cancer screening, like a mammogram, because they don’t have equipment that they can appropriately utilize then you’re going to misdiagnose. It will lead to delayed diagnosis and treatments.”

If signed into law, this amendment would improve healthcare equity for the 42 million Americans living with IDD.

In Oklahoma alone, more than 600 thousand Oklahomans report living with one or more disabilities, meaning this amendment would impact more than 16% of the population.

Published by: KTUL

 

View the TV Interview Here

New Study Finds Significantly Worse Cancer Survival Rates for People with Intellectual and Developmental Disabilities

 

New Study Finds Significantly Worse Cancer Survival Rates for People with Intellectual and Developmental Disabilities

Clearwater, April 8, 2024

By Daniel Mutter

Researchers conclude that improvements in physician training are an essential step to lowering mortality rates for disabled cancer patients.

A new study published in the Canadian Journal of Public Health found people with intellectual and developmental disabilities (IDD) suffered higher instances of death after being diagnosed with breast, colorectal, or lung cancer.

According to Breast (female), Colorectal, and Lung Cancer Survival in People with Intellectual or Developmental Disabilities: A Population-Based Retrospective Cohort Study, published February 5, 2024, patients with IDD were 2.74 times more likely to die from breast cancer, 2.42 times more likely to die from colorectal cancer, and 1.49 times more likely to die from lung cancer. (1)

Researchers examined data from nearly 340,000 adults diagnosed from 2007 to 2019 in Ontario, Canada. Patients were followed from their date of index cancer diagnosis until they died or by December 31, 2021, whichever came first. With few exceptions, worse survival for people with IDD persisted regardless of stage at diagnosis. Five-year survival for patients with IDD vs. no IDD was 61.5% vs. 81.7% for those with breast cancer, 34.2% vs. 56.6% for colorectal cancer, and 11.9% vs. 19.7% for lung cancer. (2)

The study points to several causes for poorer health outcomes for cancer patients with IDD. According to study author Dr. Alyson Mahar, implicit and explicit biases and ableism within medicine and nursing often contribute to inequitable health outcomes.

“Physicians often believe people with IDD aren’t going to live as long, so it isn’t worth screening them for cancer. This is an antiquated way of thinking,” says Dr. Craig Escudé, President of IntellectAbility. “Studies have shown that healthcare workers are often under the impression that people with IDD have a lower quality of life. But it’s important to recognize that just because somebody’s life is different doesn’t mean it’s of a lower quality. We must value all people and invest time and energy to help them live fuller and healthier lives.”

According to the study, misconceptions about quality of life and gaps in physician knowledge are directly linked to a lack of training in how to care for people with IDD properly. It can often be challenging for healthcare workers to diagnose cancer in patients who don’t use words to communicate how they are feeling. Limitations in recognizing early signs of health destabilization in any population sub-group can lead to delayed or improper diagnoses and, in turn, poorer health outcomes.

“It’s so important that we train clinicians to be able to look for other signs of early health destabilization. If we can catch these things earlier by increasing screenings and being more attuned to the different ways that a person might present with signs or symptoms of an illness, we’re much more likely to produce better health outcomes,” says Escudé.

IntellectAbility’s eLearn course, The Curriculum in IDD Healthcare (CIDDH), aims to address gaps in the delivery of medical care to people with IDD. A newly published study in the peer-reviewed journal Knowledge found that trainees deemed CIDDH very effective. By addressing the unique needs of individuals with IDD, healthcare training programs like CIDDH can reduce health disparities and improve the quality of life among patients with IDD. (3)

“The Curriculum in IDD Healthcare teaches clinicians how health conditions appear differently in people with IDD, how their communication styles might be different, and how adverse behaviors might be an early sign of health destabilization, including for diseases like cancer,” says Escudé. “It’s important and valuable for healthcare workers to investigate those early signs and symptoms, just like they would for anyone else, to be able to make more accurate diagnoses, pick up on things earlier, and improve health outcomes.”

Sources:

1. https://link.springer.com/article/10.17269/s41997-023-00844-8
2. https://www.medscape.com/viewarticle/intellectual-disabilities-linked-worse-cancer-survival-2024a10003j8?form=fpf
3. https://www.mdpi.com/2673-9585/4/1/4

Author Daniel Mutter can be reached at Daniel (at) mutterworks.com

Published in the EIN Presswire