Too frequently, in the health care field, adults with developmental disabilities are unnoticed, uncomplaining, and unheard; neglect and abuse are commonplace.

Paramedics, nurses, firemen, search and rescue personnel, trauma doctors, and family physicians all have a responsibility to help make developmentally disabled patients’ lives better by first acknowledging people with developmental disabilities as people and then by listening, observing, and empathizing with these patients.

Consensus guidelines for primary health care of adults with developmental disabilitiesTo respond to the difficulties faced by family physicians, a group of health professionals and administrators experienced in the field of developmental disabilities (eg. family physicians, nurses, psychologists, and psychiatrists) met in Toronto, Ontario in November 2005 to develop the “Consensus guidelines for primary health care of adults with developmental disabilities.”

The guidelines contain 24 considerations about the health and health care of adults with developmental disabilities and recommend specific actions based on the best available evidence.

They are the first Canadian guidelines to address the unmet health needs of adults with developmental disabilities.

The guidelines provide family physicians with approaches that need to be taken and areas that need particular attention with this population.

The guidelines touch on adaptive functioning, crucial to provide effective health care, the potential complications of multiple medications and side effects, abuse or neglect screening, informed consent and capacity to consent, vision and hearing impairments, dental disease which can account for problems, earlier than usual and frequent screening for thyroid and cardiovascular disease, more so than the general population, vaccinations, screening for sexually transmitted diseases, and conversations about sexual health. The guidelines encourage doctors to develop a crisis plan with the patient in case there is a health emergency.

Outside of the medical clinic, a first responder should be able to recognize someone who has a developmental disability.

People with a developmental disability are more vulnerable to respond poorly in a crisis situation. They can have decreased pain responses, limited communication skills, and their body language can be mistaken for the person being combative or intoxicated, when really, they are not.

Ronald Gibson, retired BC Paramedic and Training Officer said that learning to respond better to people with diversabilities is not in any training manual or lecture room.

“I was a training officer for many years and there is nothing in the curriculum. It was a personal choice to learn how to serve people with developmental delays. There needs to be disability awareness training for first responders.”

The Canadian Medical Association estimates that 38 percent of people with a developmental disability have a mental illness. Forty three percent have high blood pressure, known as the silent killer. Thirty percent have communication problems, 24 percent have epilepsy, 20 percent have hearing impairments that can impact their responses to directions and questions, and 30 percent have physical disabilities.

Gibson, who has a daughter with developmental disabilities, said you have to look, listen and observe.

“Look at their clothing,  their movements, their facial features, do they have a service animal, and identification bracelet or necklace, there are visual clues.”

Gibson said there are hidden disabilities that are not always easy to recognize and a person with autism, for instance, can be judged to be intoxicated, uncooperative, or even guilty of something. A person with hearing loss is not ignoring you. A person who is stumbling around may have vision loss and not be intoxicated. A person who cannot make eye contact is not necessarily someone you should be suspicious of.

“If someone in an emergency situation behaves out of the norm, doesn’t accurately answer questions,  presents with unusual medical issues, do not make assumptions. And it is a fine line to maneuver when you are in a fast-paced stressful situation. But the fact is the patient might not understand what is happening, they might not understand body language or gestures, looking them in the eye might make them fearful so you have to control your non-verbal signals to reduce their anxiety and fear. Use simple, plain language, avoid jargon, and ask your partner to step in if you don’t make any progress.”

Gibson said he has cared for developmentally disabled people who were not sensitive to pain or temperature, and who, in an effort to please, would answer “yes” to every question.

“There are hands-on actions you have to be careful about,” he said. “Many people with developmental disabilities have underdeveloped diaphrams and an out of control person who is upset or scared or is resisting help may suffocate if placed face down. It is called positional dysphixia. Many patients have heart defects, poor airways.”

Gibson said that a lot of the responsibility must be placed on caregivers of those who have developmental disabilities and the patients themselves.

“If you have a language board, or use sign language, or take life saving medication, you must have this information written down or on hand for emergency personnel. Make sure you obtain and wear a medical alert bracelet. It is critical to have background information for different types of developmental disabilities.”

Gibson also thinks that Inclusion BC and Community Living agencies should  have open houses for all individuals with developmental disabilities and get first responders in their communities to be there, to introduce themselves in plain clothes before an emergency arises.

“Show them your gear, let them touch it or put it on, they will feel less threatened during a crisis.”

Gibson said that first responders and medical personnel have to listen to the small things. No person just becomes their vital signs. Don’t just turn them over to the hospital and let them handle it.

“If I do not have compassion for the problems I am being presented with, the ability to treat the person who doesn’t fall into the text book, if i don’t have the time to become part of their experience then I am doing a disservice to them. You have to go out of the box sometimes.  Because  of my daughter I had the compassion and understanding and desire to help and go the extra mile. A lot of my partners would complain that it took me too long with a disabled patient and they thought I should have gone quicker.”

Gibson does not know of any textbook that teaches emergency personnel how to serve people with developmental disabilities. He says service has to be based on aptitude more than book smarts.

“It is very sad to see these loopholes in the system. Training should provoke thought about it from the perspective of the patient. There are signs and symptoms that need to be understood but there is also a person and we must be able to capture and preserve the gift that person brings to the world.”