Color & Control:

We can do better

By Dr. Craig Escudé

Ask any parent or supporter of a person with an intellectual and/or developmental disability (IDD) if they have had a challenge in accessing informed and appropriate health care for the person they support, and the answer will surely be “YES.”

The facts are that:

• People with IDD have a lower life expectancy.

• There are lower rates of preventative screening in people with IDD.

• There are multiple barriers to receiving appropriate health care.

• There are numerous incorrect assumptions and stereotypes about people with IDD made by health care providers.

• Only 40 per cent of physicians are confident about their ability to provide the same quality of health care to patients with a disability.

• Only 56 per cent of physicians strongly agreed that they welcomed people with a disability into their practices.

To further illustrate this point, in a recent survey, nurses who have worked in the field of IDD health care for years gave their comments about their experiences with physicians when attempting to facilitate health care visits.

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.”

It’s easy to look at this information and conclude that many physicians are simply incompetent, uncaring, and heartless when it comes to providing health care for someone with a disability. But upon further investigation, we find that clinicians are essentially not trained on how to provide health care to this group of patients. 

Medical schools, nursing schools and other health professional training programs are severely lacking in ensuring clinical competency of practitioners relating to providing health care to some of the most vulnerable patients they will see. There is a mismatch between the considerable unmet health needs of people with intellectual disabilities and varying degrees of teaching within medical schools. When a clinician is not trained in a particular area of practice, outcomes and patient satisfaction would expectedly be less favourable.

For example: If you asked a family physician to perform a heart transplant, the result would likely be dismal. Not because the physician is uncaring, but because they are not trained to do that procedure. Truthfully, most of us would never go to a family physician and expect that service. The difference here, however, is that people with disabilities are appropriately seeking general health care from primary health care providers who were not trained in this field. Providing a basic level of health care to people with IDD should be in every primary care physician’s skillset. 

An optimistic outlook
I’ve practiced in the field of providing health care for people with severe and profound levels of IDD since the late 1990s, and I’ve never been more encouraged by what I am seeing in terms of improving training and education of providers about this important area of medicine. Another indicator of increased focus on this topic is that there are more available grants whose purpose is to improve health and wellness of people with IDD. Many of these grants require varying degrees of effort to improve clinicians’ competency in providing IDD health care through better education. 

What can you do?
Let your health care providers know about these organizations and resources that are available to them. Reach out to your local health professional training programs and encourage them to incorporate competency in providing IDD health care into their requirements for graduation. Partner with advocacy organizations to raise awareness of the need for greater education of clinicians in this field. The recent availability of online learning courses in this field makes it easier than ever for schools and practicing clinicians to incorporate training into their programs and continuing education endeavors. I am also pleased to see that greater importance is being placed on clinician education in IDD health care. 

My hope is that one day soon, ANYONE, with or without a disability, can present to any clinician’s office, emergency department or hospital and receive compassionate, competent, capably delivered health care. 

Craig Escudé, MD, FAAFP, FAADM, is a family physician who has worked and taught extensively in the field of IDD Healthcare and is the president of IntellectAbility. 

References available upon request.

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