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Disturbing Personal Stories from Nurses About Doctors’ Treatment of People with IDD Just Released in a New Study

A new, must-read survey reveals details about nurses’ difficult experiences with physicians in working to get appropriate healthcare for 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, a 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 harrowing experiences of the nurses related in this survey explains why.”

Some of the quotes in the study 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 that 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.”

“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.”

Physicians’ Own Attitudes

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.

Comorbidities are Not the Only Reason for Higher Death Rates from COVID

Several studies have shown that people with IDD have a greater likelihood and getting COVID and of Dying from COVID. The most recent one notes that people with an intellectual disability have a 5.9 times greater risk of dying from COVID which makes the 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 from 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.

Fresh Solutions to Combat this Problem

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.

Online Training for Doctors

The most recently developed program to train clinicians is IntellectAbility’s 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 attend live lectures,” says Dr. Escudé.

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 provides 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.

The course can be accessed by an individual physician wanting to take the course or can be licensed by agencies and health professional schools to teach the fundamentals of IDD healthcare to community physicians and medical students.

Hardcover or eBook Resource

Another resource from IntellectAbility is the book Clinical Pearls in IDD Healthcare. The book contains 55 “Clinical Pearls” or small bits of helpful clinical information, to help physicians, nurses, direct support staff, families, and anyone that supports people with IDD better understand the healthcare needs of people with IDD. “I appreciate the concise information written to all levels of understanding. I am a RN Care Manager and notice some topics extend our common information on preventable risks such as aspiration and constipation,” says Kevyn Burn, RN, Lead RN Care Manager for Wall Residences. Marcy Nelson, Special Projects Coordinator for Ray Graham Association adds, “ Clinical Pearls is a great resource for our medical advocacy project attempting to inform doctors that serve people with developmental and other intellectual disabilities. It is clear and easy to read and understand for everyone from direct care professionals to family members to our medical providers.”

Education Saves Lives

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

References:

  1. John P Bartkowski and Courtney K Barrie. “Enhancing Care for Patients with Intellectual and Developmental Disabilities: A Critical Assessment Based on Nurses’ Experiential Reflections”. EC Nursing and Healthcare 3 (2021): 200-211.
  2. Physicians’ Perceptions Of People With Disability And Their Health Care, Lisa I. Iezzoni, Sowmya R. Rao, Julie Ressalam, Dragana Bolcic-Jankovic, Nicole D. Agaronnik, Karen Donelan, Tara Lagu, and Eric G. Campbell, Health Affairs 2021 40:2, 297-306
  3. Gleason, Ross, Fossi, Bolonsky, Tobias, Stephens. “The Devastating Impact of Covid-19 on Individuals with Intellectual Disabilities in the United States” NEJM Innovations in Care Delivery, March 5, 2021
  4. https://hrstonline.com/hrsu/idd-training-curriculum/

To read the study referenced above, click here. Warning. It may be difficult and disturbing to read, especially if you have worked in this field or have a family member with IDD.

Are you a non-profit that would be interested in applying for a grant to deliver IDD healthcare training to physicians in your area? Here’s an opportunity to apply for one from the WITH foundation.

Attention: For providers or clinicians in the state of Georgia who are interested in utilizing the Curriculum in IDD Healthcare to train healthcare providers in the state, please contact: statewide.clinicaloversight@dbhdd.ga.gov at the Department of Behavioral Health and Developmental Disabilities. If you are a state official or agency administrator from a state other than GA and would like to provide the course to clinicians in your state, contact IntellectAbility at inquiries@ReplacingRisk.com.

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