My son Jay who has severe Autism was lost at school before and another time at an amusement park. Thankfully, he was quickly found. Studies report that wandering is the only cause of death due to Autism and that roughly half of people who have Autism wander from safe places. The majority being people who have low or nonverbal ability. My husband and I wanted to create a way to let people who see our son if he is lost to know that he is a person who needs help and then tell them how to help him. So we started a Non Profit named If I Need Help making personal wearable QR codes, when scanned or manually entered it links to a live profile that can be edited in real time. The code can be printed out with the free membership. Also the Emergency Q&A can be filled in at the Caregiver’s leisure and emailed to first responders during a crisis.
We offer many different ways to wear the code: patches, pins, clips, keychains, custom iD tags for shoes or necklaces, seat belt alerts and ID cards. Custom Temporary tats will be out soon. This way of identification and information is now also helping people with mental illness, memory care or with physical conditions in which they may need help during critical situations. Please go to IfiNeedHelp.org to learn more.
The successful outcome of any interaction between a subject/casualty and first responders depends, along with other variables, on the emergency response team’s rapid access to critical details about the individual. This is particularly true when the person has a unique set of needs about which the first responders may be unaware – such as those associated with autism.
Emergency response personnel are tasked with responding to ALL calls, including those involving individuals with special needs. They are expected to respond not only professionally but compassionately, an expectation that implies a seemingly allusive understanding of person-specific needs and sensitivities.
The Centers for Disease Control describes Autism Spectrum Disorder (ASD) as: “developmental disabilities that cause substantial impairments in social interaction and communication and the presence of unusual behaviors and interests”. Autism is a ‘spectrum disorder’ that affects individuals differently and to varying degrees meaning that no two people with autism are alike. Furthermore, the prevalence of autism is not affected by race, region, or socio-economic status.
Individuals with an ASD often suffer from additional co-morbid diagnoses which may include: allergies, asthma, epilepsy, digestive disorders, persistent viral infections, feeding disorders, sensory integration dysfunction, sleeping disorders, and more. And, in contrast to physical disabilities, in many cases without explicit knowledge or information, an onlooker will have no idea that a person has autism — and it is, therefore, often referred to as an “invisible disability”.
Since autism was first diagnosed in the U.S. its incidence has climbed from one in 10,000 to one in 68 children making it the country’s single fastest growing developmental disability. As children with autism grow up, they do not “outgrow” their autism, but rather develop, to varying degrees, an array of skills to cope with their unique communication, social and behavioral differences.
Current statistics estimate that over the next 10 years half a million teens with autism will transition into adulthood. Furthermore, research has shown that individuals with autism are seven to 10 times more likely than their neurotypical peers to interact with first responders. Therefore the probability of interactions between emergency response personnel and those with autism increases with each passing day.
A 9-1-1 call comes in that a young adult, 6 foot tall, 250 lb male has been involved in a vehicle vs. pedestrian accident. He is conscious but not responding to the good Samaritans’ questions.
When the first responders arrive, they start by asking the young man his name… no response. They ask him if he is in pain…No response. He becomes agitated and starts flapping his hands rapidly and repetitively.
Has the young man not heard the questions? Does he not understand English? Has the crash caused head trauma resulting in disorientation? Perhaps he is diabetic and low blood sugar is causing his confusion?
What should the first responders do? In the worst case scenario, they are left to guess, make assumptions and precede based on standard operating procedures that may, or may not, be the best course of treatment. Or, in the best case scenario, they have easy and efficient access to the information about the young man that would help them understand his needs and treat him properly.
The “ICE” — In Case of Emergency – concept is the brain-child of Bob Brotchie, a former senior paramedic and current psychotherapy counsellor. A combination of Bob’s professional experience and his own emergency incident, led to his “lightbulb” moment: a uniform method adopted by both the public and first responders for providing and accessing emergency contact information in case of emergency – ICE. The goal was for people to enter their emergency contact(s) information into their mobile phones using the ICE preface thereby informing first responders who to contact.
In 2005, only a few months after Bob first conceived of the idea, ICE went viral. It got the attention of both the general public and of the first responder community. As time passed and mobile technology evolved, so did the use and implementation of ICE on mobile devices. The public’s reliance on smartphones, along with their becoming an essential accessory to be kept on-hand at all times, yielded an array of ICE mobile apps. This 21st century implementation of the ICE concept broadened its capability and value: in addition to emergency contact information, many of the apps also store a variety of medical history, medications, allergy, insurance and other details that can help first responders in their assessment and treatment of injured, confused or unconscious patients.
Historically, first responders have looked for a wallet card or document in a subject’s wallet; now, with the advent of ICE apps, they have an additional potential resource on the person’s smartphone.
Easy and efficient access to specific information about an autistic person’s communication challenges and needs, their unique behaviors and triggers, sensitivities, allergies, medical information and their emergency contacts can dramatically improve the outcome of any emergency response interaction. ICE4Autism – the only autism-specific in case of emergency (ICE) mobile app – gives people on the spectrum and first responders a practical solution they’ve never had before. Instead of relying on efforts to directly communicate with the person – who may be unconscious, altered and/or have communication challenges – first responders can use ICE4Autism to quickly obtain the person-specific, actionable information they need to treat the individual appropriately.
Returning to our scenario, the ICE4Autism app could inform the responders that yes, in fact, the young man had heard their questions and did understand English, but that he needed a bit more time to process the questions and to respond. They might also learn that no, he does not have diabetes, but that he does have sensory integration dysfunction making the sirens and/or bright lights a contributing factor to his agitation and difficulty focusing. They may be informed that the repetitive hand flapping is a calming mechanism he implements and that they should allow him to continue unless there is a critical reason to make him stop. The app would also tell them how to contact the people who (most likely) know him best, can help with additional information, treatment decisions and, most importantly, can come to his side and provide him with the love and support that everyone needs and benefits from in an emergency.
To overcome the unique challenges presented by the increasing incidence of interactions between the first responder and autism communities, both parties benefit from the exploitation of newly-available 21st century tools. The broad utilization of the ICE4Autism mobile app throughout the autism community will enhance first responders’ abilities to provide needs-aware and person-specific care thereby improving outcomes and quality of care.
Both first responders and members of the autism community should leverage new technologies and forward-thinking solutions to improve the outcomes of their inevitable interactions with each other. The integration of such tools will enhance the quality of care individuals with autism receive and the ability of first responders to do their jobs more effectively and efficiently.
And it’s not just Galaxies but any kind of smartphone, like the Droid Incredible, Windows Phone or even the iPhone 6.
The secret is letting your phone do the talking for you in an emergency. And the way to do that, is with ICE.
But what good is an ICE Contact if the people who need that information immediately, can’t find it?
Once you finish setting up your ICE Contacts, (you can find out how to do that right here) make it stand out by using the Add Photo function to upload a graphic like the ones on this page. You can make your own, or download ours from our Free Resources page.
Once you find the graphic you want, choose Save Target As, to save it to your desktop.
Then save or send the graphic to the Photos on your phone.
Open your ICE Contact, Touch the little photo icon, Choose Image, pick the graphic you want and Save.
While you’re here, be sure to check out our other posts including How To Set Up An ICE Contact on your Samsung Galaxy and How To ICE Your iPhone to learn everything you need to know about ICEing your phone. And while you’re feeling proactive, don’t forget to put ICE Contacts on your spouse’s and kid’s phones too, along with each other’s contact information.
And it’s not just iPhones but any kind of smartphone, like the Samsung Galaxy, Droid Incredible, Windows Phone or even the iPhone 6.
Once you’re done setting up your ICE Contacts, (you can learn how to do that right here) make them stand out by using the Add Photo function on your iPhone to upload a graphic like this one, from our Free Resources Page.
Once you download the graphic you like, save it to your desktop and send/save the graphic to Photos on your phone.
Touch Edit, Choose the Graphic from Photos & Save it to your contact.
While you’re here, be sure to check out our other posts including How To Set Up An ICE Contact on your iPhone and your Samsung Galaxy to learn everything you need to know about ICEing your phone. And while you’re feeling proactive, don’t forget to put ICE Contacts on your spouse’s and kid’s phones too, along with each other’s contact information.
How Much Medical History Should You Put In Your ICE Contact?
Any information a doctor would need to know about your history, in order to save your life.
When a patient is brought into the emergency room unconscious, aside from obvious injuries, the doctors caring for him basically have no information about their patient. They have no idea what he might be allergic to, what medications he’s taking, or the surgery he had the month before.
THAT is the information that you need to put into your ICE Contact.
Here’s a real life example of why that’s so important.
Elaine was an active seventy-one year old living on her own in Chicago. One day while getting ready to take a bath, she slipped and fell, striking her head and mouth on the side of the tub. Her neighbors realized they hadn’t seen her all day and called the paramedics, who went in and found her, conscious, but unable to speak.
Elaine was my grandma. Despite the fact that the hospital had my mother’s and my contact information for our home in Los Angeles, the hospital neglected to call us. By the time they did, Grandma was in critical condition from a drug interaction caused by a medication that they gave her that interacted with one that they didn’t realize she had been taking. A few hours after the hospital called, she passed away.
That’s how critical communicating a person’s vital medical information can be.
Close your eyes for a moment & imagine that you’re sitting in the ER with an injury like a broken arm or that you need emergency surgery. The doctor – someone who doesn’t know you or your unique medical needs – walks through the door.
What does this doctor need to know about you? Jot down all of the things that just went through your mind. Old injuries, allergies, surgeries, anything you think is important.
Are there any other factors that might impact your care? Are you on a special diet? Do you take supplements or anything else that a doctor might need to know to give you the best care possible?
This is also a great exercise to do when setting up your family’s ICE Contacts or filling out their medical history forms. Just imagine them, one by one in the ER and write down everything you would need to tell a doctor about their medical background.
Having all of this information in your and their ICE Contacts is not only a great way to communicate your medical needs if you’re unable to speak for yourself. It’s also a great memory jogger to use when visiting a new doctor, or sitting in the ER with your spouse or your children.
There’s nothing worse than having something on the tip of your tongue and not being able to remember it –except when the word you’re trying to remember is the name of a medication that the emergency room physician needs to save your daughter’s life!
So take a moment to run through this exercise for every member of your immediate family. That way you’ll be sure to have an ICE Contact that does more than give a hospital your emergency numbers. It might just give them the information they need to save your life. Or the life of someone you love.
While you’re here, stop by our post on How To Create a Medical History, to download our free medical history forms and find out ways to include your entire medical history right inside your ICE Contact.
Want to learn how to create an awesome ICE Contact?
Check out our other posts How To Put An ICE Contact On Your iPhone, or How To ICE Your Samsung Galaxy to learn everything you need to know about ICEing your phone. And don’t forget to put ICE Contacts on your spouse’s and kid’s phones too, along with each other’s contact information.