Connections - 04.29.21

Disturbing Stories from Nurses: New Study Bound to Make Waves in the I/DD Health Care World

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By Craig Escudé, IntellectAbility

 Dr. Craig Escude'You heard them before: complaints from nurses and other supporters about challenges they’ve faced in getting health care for people with I/DD. “The doctor didn’t listen to what I was saying.” “The doctor put them on a psychotropic medication even though I said that this behavior occurs when she is in pain from something.” A just-released study now recounts many of the harrowing experiences nurses have faced when supporting people with I/DD to receive quality health care.

The study, published in EC Nursing and Healthcare in February 2021, can be an emotionally difficult read. The article recounts quotes provided by 193 respondents who were mostly nurses with several years’ experience working in the field. They were asked to describe both positive and negative experiences they have had when accompanying people with I/DD to medical appointments or emergency room visits. Not surprisingly, two-thirds of the comments were negative. Seeing so many comments from nurses about negative physician experiences highlights the absolute need to provide more specialized care and better training to health care providers about treating their patients who have disabilities.

In another recent study, physicians relate their own perceptions about caring for people with disabilities. The survey of 714 practicing physicians revealed that only about 40 percent were “very confident” about their ability to provide the same quality of care to patients with a disability, while only 56 percent “strongly agreed” that they welcomed people with a disability into their practices. The study, published in February 2021, also found that 82% of physicians believed that people with a significant disability have a worse quality of life than those without a disability.

Training Clinicians is Difficult

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 I/DD, 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 first and only eLearning course geared to train physicians about the fundamentals of providing healthcare to people with I/DD is now available. The course is applicable to both practicing physicians and medical students.

The effectiveness of the Curriculum in I/DD Health Care 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 I/DD health care and 81% strongly agreeing that it increased their confidence in treating people with I/DD.”

StationMD, a company that provides I/DD-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 along with the book, Clinical Pearls in I/DD Health Care, are available as educational resources for clinicians that can improve health and wellness for people with I/DD. Some community providers and advocacy agencies are even acquiring these tools and providing them directly to clinicians that see people they support simply because of the significant challenges they’ve faced when accessing quality health care.

The Time to Act is Now

When we educate clinicians, we save lives. Greater attention is needed to train the health care workforce to provide care to people who are most vulnerable. Add your voice to the movement by reaching out to clinicians and medical schools in your area informing them of the need, and of the newly available tools referenced here. Efforts being made to improve I/DD health care education, while long overdue, will undoubtably have a tremendously positive impact on the lives of millions of people with intellectual and developmental disabilities in the US.

Dr. Craig Escudé is a board-certified Fellow of the American Academy of Family Physicians and the American Academy of Developmental Medicine, and is the President of IntellectAbility. IntellectAbility’s roots began in 1992 and it is the industry leader in training courses, webinars and materials to help at-risk populations live life to the fullest.