1. SAFETY FIRST! PEOPLE WITH INTELLECTUAL & OTHER DISABILITIES
Robert Marion, MD
Director, Rose F. Kennedy UCEDD
Albert Einstein College of Medicine
Children’s Montefiore

2. INTRODUCTION:
~10% of children in the US have an intellectual or other disability.
These individuals use ED services disproportionately (Am J Emergency Med May 2011):
55% visited the ED >2 times in a 2 year period.
15.6% visited the ED >5 times in a 2 year period
% is greatest for those with dual diagnosis
When it comes to emergency situations, people with disabilities have special needs that may or may not be apparent. These include:
Communication problems (hearing, vision, speech)
Special medical problems (latex allergy, etc.)
When caring for people with disabilities, care must be taken to address all special needs

3. Patient 1: Becky
Becky, a 17 year old with an autism spectrum disorder (ASD) and a behavioral disorder, sustained deep cuts and lost a significant amount of blood when she fell through a glass door.
When EMS arrived, she was screaming and inconsolable; her parents could not quiet her.
The EMTs had received special training in dealing with individuals with dual diagnoses. They were able to calm Becky. They stabilized her and secured her in the ambulance.

4. TIPS FOR FIRST RESPONDERS: PEOPLE WITH AUTISM (American Association on Health and Disability)
Communication
 Speak calmly - use direct, concrete phrases with no more than one or two steps….
 Allow extra time for the person to respond.
 The person may repeat what you have said, repeat the same phrase over and over, talk about topics unrelated to the situation, or have an unusual or monotone voice. This is their attempt to communicate, and is not meant to irritate you or be disrespectful.
 Avoid using phrases that have > one meaning such as “spread eagle” or “knock it off.”
 Visually check to see if there is a wrist or arm tattoo or bracelet that identifies the person as having an autism spectrum disorder.
 Some people with autism don’t show indications of pain - check for injuries.
Social
 Approach the person in a calm manner. Try not to appear threatening.
 The person may not understand typical social rules, so may be dressed oddly, invade your space, etc. It’s best not to try to change these behaviors. Go with the flow!
 The person may look at you at odd angles, laugh or giggle inappropriately, or not seem to take the situation seriously. Do not interpret these behaviors as deceit or disrespect.
 Because of lack of understanding, persons with ASDs may display behavior that suggests drug abuse or psychosis, defiance or belligerence. Don’t assume!

5. TIPS FOR FIRST RESPONDERS: PEOPLE WITH AUTISM (American Association on Health and Disability)
 If possible, turn off sirens, lights, & remove canine partners. Attempt to find a quiet location for the person, especially if you need to talk with them.
 Avoid touching the person, and if necessary, gesture or slowly guide the person.
 If the person is showing obsessive or repetitive behaviors, or is fixated on a topic or object, try to avoid stopping these behaviors or taking the object away from them, unless there is risk to self or others.
 Make sure that the person is away from potential hazards or dangers (busy streets, etc.) since they may not have a fear of danger.
 Be alert to the possibility of outbursts or impulsive, unexplained behavior. If the person is not harming themselves or others, wait until these behaviors subside.

6. Patient 2: Jesus
Jesus, a 10 year old boy with spina bifida, underwent scoliosis surgery.
In Recovery Room, a passing nurse placed an oxygen mask on his face.
Severely allergic to Latex, Jesus suffered an anaphylactic reaction.
By the time the staff recognized what had happened, Jose had been anoxic for 8 minutes.
He died three days later in the ICU, having never regained consciousness

7. Spina Bifida and Latex Allergy
For reasons we don’t understand, everyone born with spina bifida will develop an allergy to Latex at some point in his or her life.
Latex is to be avoided in all people with SB.
People with SB are encouraged to keep a GO! Bag containing all necessary items

8. GO! BAG ITEMS: Latex-free gloves, catheters, bandages, wipes, etc.
Epi-pen
Medical summary
Snacks and drinks
Pen and Notebook with:
List of telephone numbers
List of medications
Other items