The Disability Tribune
By Craig Escudé, MD, FAAFP, FAADM

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 healthcare needs of my loved one who has a disability.

“They were rude.”
“The doctor just wanted to start him on a behavior medication.”
“He didn’t listen to what I had to say.”
“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 healthcare for people with intellectual disabilities. And as much as I hate to say it, there’s some truth to it.

Person-centered Oath

The reason goes beyond that healthcare providers are just plain insensitive to the needs of people. I would even suggest the opposite. In fact, we take an oath at the beginning of our career, the Hippocratic Oath, that includes statements like these as excerpted from the modern version of the oath:

• “I will remember that there is art to medicine as well as science, and that warmth, sympathy and understanding may outweigh the surgeon’s knife or the chemist’s drug.”
• “I will not be ashamed to say ‘I know not,’ nor will I fail to call in my colleagues when the skills of another are needed for a patient’s recovery.”
• “I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability.”
• “I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.”

It’s not a lack of compassion, it’s a lack of understanding

Facts:

• There are numerous incorrect assumptions and stereotypes about people with dis­abilities made by healthcare providers.¹
• Physicians report a lack of experience with the IDD population and the training nec­essary to provide healthcare to individuals with IDD. ²
• Medical students who do not receive any training on or experience with the IDD population have been found to exhibit poorer performance caring for patients with IDD in tasks varying from taking a medical history, conducting physical exams and ordering laboratory tests. ³
• There is evidence that early and frequent experiences with people with disabilities can improve medical students’ knowledge and attitudes about disability, thereby increasing their comfort level in providing care to people with disabilities. ⁴

Humble beginnings

People with intellectual and developmental disabilities (IDD) have health disparities including reduced rates of cancer screenings and dental care. And unfortunately, many healthcare providers have received little training in how to meet the healthcare needs of people with IDD. I was one of them.

After I began working at a regional center for people with severe and profound levels of IDD, I quickly learned that my medical school and residency training did not provide me with the necessary skills and experience to provide adequate healthcare for people with disabilities. What I learned, I learned from the nurses and direct support professionals that had been working there for years. It wasn’t that the disease conditions were any different, it was that they presented in a different way, with different frequencies and that communication of symptoms was largely non-verbal. 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.

On-the-job training

I’m proof that it’s possible to teach an old dog new tricks! Here are some bits of information called “Clinical Pearls” I’ve learned along the way…

• Just because someone has a disability doesn’t mean that their life is less worthy of good healthcare and life opportunities. A different quality of life does not equal a lower quality of life.
• Disruptive or aggressive behavior is less likely to be “just because a person has a disability” and more often because there is an underlying reason that can be improved upon. I might be that a person is experiencing pain from a dental abscess or an ingrown toenail, for instance. It could be that they are in a restrictive environment that does not foster independence and personal choice. Or it could be because they are experiencing side effects from a mediation, and it might even be a medication that they should not be taking in the first place. There are many reasons for untoward behavior. The last thing that should be done is to start someone on a medication “to reduce their behavior” without evaluating every other possible cause. Unfortunately, this is often first-line treatment.
• Never, never refer someone to hospice or make them a “Do Not Resuscitate” on the basis of their disability alone. This decision may be appropriate under certain circumstances, but never just because they have a disability.
• Constipation is a MAJOR problem in this field of healthcare. I would have never though that constipation could cause all of the things it does, or that I would be treating people for this condition to the degree that I did in clinical practice. I emphasize this issue so much in my lectures that I’ve been called “the Constipation Doctor” more than once. What an honor!
• There are physical, positioning and movement techniques that can aid in swallowing, digestion and bowel elimination. Feeding tubes and medications are not the only solutions.
• The overuse of medications, especially psychotropic medications, is rampant in this field of healthcare. Along with it comes increased potential for side effects and interactions. Sometimes taking people off medications actually leads to improvement.
• Pica behavior can be a sign of undiagnosed gastrointestinal issues including gastroesophageal reflux disease.

And the list goes on and on and on….. There are so many of these, that I’ve compiled them into a book.

Resources for people with intellectual and developmental disabilities

In the past, families and supporters who had frustrating healthcare 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 IDD Healthcare. Is a book that contains 55 “Pearls” learned “the hard way” so other clinicians, supporters and family members of people with IDD 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 healthcare 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 IDD Healthcare” is now available. This six-module course teaches clinicians, especially physicians and nurses, the fundamentals of IDD Healthcare. 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 IDD Toolkit to assist clinicians in providing better healthcare for people with IDD. There are several important and useful forms to aid clinicians in meeting the healthcare needs of people with disabilities.
• The American Academy of Developmental Medicine and Dentistry is an organization supporting healthcare professionals in learning how to improve the quality of healthcare for people with IDD. They are a tremendous resource for clinicians looking for ways to grow their skills in providing healthcare for people with disabilities.
• The Developmental Disabilities Nurses Association is an organization dedicated to educating, empowering, and advocating for nurses practicing in the specialty of developmental disability nursing. Nurses can connect with the organization to further their skills and knowledge in this field of medicine.

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 healthcare 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 healthcare and better outcomes.

Right, not privilege

Healthcare is a right. And, everyone has the right to receive basic healthcare that alleviates suffering and improves quality of life. People with disabilities should have access to the same quality of healthcare that everyone does. I firmly believe that everyone, with or without a disability, should be able to present to any clinicians’ office or hospital and receive a basic level of capable, compassionate, and appropriate healthcare. If you’re a clinician, you owe it to yourself and to your patients to become educated in this area of medicine. If you’re a family member or supporter, you now can do more than just lament about the need for better trained-clinicians.

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 IDD and complex medical conditions and is the author of Clinical Pearls in IDD Healthcare and the Curriculum in IDD Healthcare.

¹ (National Council on Disability. The Current State of Health Care for People with Disabilities 2009)

² (Reichard and Turnbull, 2004)

³ (Brown, Graham, Richeson, Wu, and McDermott, 2010)

⁴ (Brown, Graham, Richeson, Wu, and McDermott, 2010; Jackson, 2007; Larson McNeal, Carrothers and Premo, 2002; Long-Bellil et al., 2011; Rose, Kent and Rose, 2011; Thistlethwaite and Ewart, 2003; Tracy and Iacono, 2008)