by Dr. Craig Escudé, President, HRS, Inc.
A storyline I’ve heard recounted many times in my work as a physician in this field is that doctors just don’t understand the health care needs of my loved one who has a disability. “They were rude.” “The doctor just wanted to start him on a behavior medication.” “She told me that we should just put him on hospice because he didn’t have any quality of life.” These and other disheartening comments by clinicians make my profession look insensitive and incompetent in regards to providing health care for people with intellectual disabilities. And much as I hate to say it, there’s some truth to it.
After I began working at a regional center for people with severe and profound levels of I/DD, I quickly learned that my medical school and residency training did not provide me with the necessary skills and experience to provide adequate health care for people with disabilities. What I learned, I learned from the nurses and direct support professionals that had been working there for years. I had to learn to understand the language of behavior and how subtle changes in a person’s behavior were often the sign of a brewing health condition and not “just because they have a disability.” Unfortunately, these things aren’t taught in medical school or most other health professional schools, for that matter.
People with Disabilities and their Supporters are Now Empowered!
In the past, families and supports who had frustrating health care experiences could do little more than grumble about the lack of availability of clinicians who understood their loved one’s needs. That’s no longer the case. Here are a few newly available resources.
The “Clinical Pearls in I/DD Health Care” Is a book that contains 55 “Pearls” learned “the hard way” so other clinicians, supporters and family members of people with I/DD don’t have to. It’s written in a format that each “Pearl” is a separate page of cardstock arranged in a binder format so that you can take one out and share it with health care providers and others when they are in need of a bit more information about a particular topic.
For more in-depth clinical education, a revolutionary online training program called the “Curriculum in I/DD Health Care” is now available. This six-module course teaches clinicians, especially physicians and nurses the fundamentals of I/DD health care. It’s interactive and includes continuing education credits for both doctors and nurses.
The Vanderbilt Kennedy University Center For Excellence in Developmental Disabilities has developed an I/DD Toolkit to assist clinicians in providing better health care for people with I/DD. There are several important and useful forms to aid clinicians in meeting the health care needs of people with disabilities.
The American Academy of Developmental Medicine and Dentistry and the Developmental Disabilities Nurses Association are professional organizations supporting health care professionals in learning how to improve the quality of health care for people with I/DD. They are a tremendous resource for clinicians looking for ways to grow their skills in providing health care for people with disabilities.
When We Educate Clinicians, We Save Lives
Families and supporters of people with disabilities now have important and effective resources that they can offer, recommend, or directly provide to health care professionals to improve their knowledge and understanding of this important facet of medical care. Tell your physicians, nurses, hospital emergency room staff dentists and others about these resources. You might even want to provide them access. For those that have loved ones that are supported by agencies and organizations, let them know about these materials. Advocate to your local nursing and medical schools to include these offerings to their students. Better training equates to better health care and better outcomes.
Remember: When we Educate Clinicians, We Save Lives
About the Author: 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 Health Risk Screening, Inc. He served as medical director of Hudspeth Regional Center in Mississippi and is the founder of DETECT, the Developmental Evaluation, Training and Educational Consultative Team of Mississippi. He has more than 20 years of clinical experience providing medical care for people with I/DD and complex medical conditions and is the author of “Clinical Pearls in I/DD Health Care” and the “Curriculum in I/DD Health Care.”