April 11, 2021

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Critical Study Highlights Poor Physician Interactions with People with…

Efforts being made to improve IDD healthcare education, while overdue, will have a tremendously positive impact on the lives of millions of people.

It’s commonly known by family members, nurses, direct support professionals and people with disabilities that finding a clinician who understands the unique needs of people with disabilities is challenging.

Recently published data showed how an inordinate number of physicians—almost 60%—feel they cannot provide quality care to people who live with Intellectual or Developmental Disabilities (IDD).(1,2) In fact, a new survey reveals details on nurses’ difficult experiences with physicians in working to get appropriate healthcare for the people with IDD they support. (1) The study published in EC Nursing and Healthcare in February of 2021 can be an emotionally difficult read.

“Learning about current attitudes and perceptions about people with IDD that many physicians have is heartbreaking.,” says Dr. Craig Escudé, physician and president of IntellectAbility. “It’s commonly known by family members, nurses, direct support professionals and people with disabilities that finding a clinician who understands the unique needs of people with disabilities is challenging. The experiences of the nurses related in this survey explains why.”

Nurses Agree

Some of the quotes provided by these nurses include:

  • “During a consultation with an ER physician, the doctor stated that people like my patient aren’t meant to live that long and have no quality of life.”
  • “Physician uncomfortable with treating individuals with IDD. Appeared either scared or annoyed.”
  • “They don’t listen to the nurse or direct support provider who knows the client.”
  • “I’ve had a number of physicians, instead of treating our individuals, recommend hospice because of a ‘poor quality of life’.”
  • “I had a doctor totally ignore what I was saying and started the individual on psych meds.”

These comments further emphasize the need to improve how medical schools educate their students about the fundamentals of providing healthcare for people with disabilities. “It’s more than just learning about how to treat medical conditions commonly seen in people with IDD like aspiration pneumonia and bowel obstruction,” says, Dr. Escudé, who conducted the nursing survey, “Physicians should be taught about the support structure for people with IDD, how to facilitate better communication and, most importantly, about the often-missed direct relationship of various adverse behaviors to treatable, underlying medical causes.”

Disparity in Healthcare Causing Over-medication and RX Errors

“So often, people with IDD are started on psychotropic medications to treat “behaviors” that are actually due to unrecognized, treatable causes such as a dental abscess, gastroesophageal reflux disease or silent aspiration. When physicians learn about these relationships, they are better prepared to not only reduce the risk of medication side effects from unnecessary drugs, but also reduce unnecessary suffering and improve the quality of day-to-day life for their patients with disabilities.”

A survey of 714 practicing physicians revealed that only about 40 percent of physicians were very confident about their ability to provide the same quality of care to patients with a disability and 56% strongly agreed that they welcomed people with a disability into their practices. (2) The study published in February of 2021 also related that 82% of physicians believed that people with a significant disability have a worse quality of life than those without a disability.

Several studies have shown that people with IDD have a greater likelihood and getting COVID-19 and of dying from COVID. The most recent study notes that people with an intellectual disability have a 5.9 times greater risk of dying from COVID which makes this second only to age as the greatest risk factor. (3)

“These studies focus on the reason for the greater rate of death to be because people with IDD have a higher number of comorbid risk factors. While this is true, what’s missing in the list of reasons is the fact that physicians are not trained to provide healthcare for people with IDD. Lack of training in any field of medicine will result in poorer outcomes. It’s clear to me that this is part of the reason for higher death rates from COVID,” states Dr. Escudé.

Until recently, it has been very challenging for medical and other health professional schools to be able to provide this training. The lack of physicians with expertise in the field, particularly relating to adults with IDD, makes it difficult to find those who are qualified to teach about this field. But there are new tools and initiatives that can help.

The most recently developed program to train clinicians is the Curriculum in IDD Healthcare.(4) It’s a 6-module, online course that teaches the fundamentals of IDD healthcare to both medical students and practicing clinicians, alike. “Online learning programs make it easy to learn from experts in various fields without having to hire new school teaching staff or attending live lectures,” says Dr. Escudé.

Physician Ability Needs to Increase Disability Ability

The effectiveness of the Curriculum in IDD Healthcare eLearn course has been studied by professors at William Carey University College of Osteopathic Medicine, and the results will be presented at Educating Leaders 2021, the Annual Conference of the American Association of Colleges of Osteopathic Medicine (AACOM). Dr. Melissa Stephens, Associate Dean of Graduate Medical Education and Population Health at the College said, “The results of our pilot showed overwhelmingly that medical students believed the course to be excellent with 94% of them strongly agreeing that the course provided information that they were previously unaware of in the field of IDD healthcare and 81% strongly agreeing that it increased their confidence in treating people with IDD.

StationMD, a company that providers IDD-specific telemedicine services, utilizes the course to train their physicians. “StationMD has employed this training in order to ensure that our doctors provide high quality care for this population,” states Dr. Matt Kaufman, CEO of StationMD.

People with IDD suffer needlessly and die from preventable causes due to underdiagnosis and misrecognition of underlying medical conditions. IntellectAbility, formerly known as Health Risk Screening, changed its name to more accurately reflect its evolution to the company that offers the most comprehensive suite of tools and training for supporters of people with IDD.

“When we educate clinicians, we save lives,” says Dr. Escudé. “The efforts being made to improve IDD healthcare education, while overdue, will undoubtedly have a tremendously positive impact on the lives of millions of people with intellectual and developmental disabilities in the US.”

About IntellectAbility

IntellectAbility’s roots began in 1992 and they are the industry leader in training courses, webinars, and materials to help at-risk populations live life to the fullest. Their focus is on developing tools and training for the person-centered support of these vulnerable populations. Through the education of government agencies and service providers, IntellectAbility aims to improve lives. 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. With unrelenting focus, IntellectAbility works to fulfill its mission of improving the health and quality of life for people faced with these types of vulnerabilities. For more information, visit ReplacingRisk.com.

1. Bartwkoski, John P. and Barrie, Courtney K.; “Enhancing Care for Patients with Intellectual and Developmental Disabilities: A Critical Assessment Based on Nurses’ Experiential Reflections; 18 Feb 2021; EC Nursing and Healthcare 3.3 (2021): 200-211; ECNH-03-00205.pdf (ecronicon.com)

2. Lisa I. Iezzoni, Sowmya R. Rao, Julie Ressalam, Dragana Bolcic-Jankovic, Nicole D. Agaronnik, Karen Donelan, Tara Lagu, and Eric G. Campbell; “Physicians’ Perceptions Of People With Disability And Their Health Care”; Feb 2021; Health Affairs 2021 40:2, 297-306; National Library of Medicine; Physicians’ Perceptions Of People With Disability And Their Health Care – PubMed (nih.gov)

3. Jonathan Gleason, Wendy Ross, Alexander Fossi, Heather Blonsky, Jane Tobias, Mary Stephens; “The Devastating Impact of Covid-19 on Individuals with Intellectual Disabilities in the United States”; 5 March 2021; NEJM Innovations in Care Delivery; catalyst.nejm.org/doi/full/10.1056/CAT.21.0051#:

4. IntellectAbility; replacingrisk.com/academy/idd-training-curriculum/

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