Wanda Refaely created ICE4Autism, an "In Case of Emergency" mobile app for the autism community. During interactions between people with autism and law enforcement, communication is critical. Learn how this autism-specific app bridges the gap between first responders and individuals who are on the spectrum.
Tell us about yourself.
The truth is, I’m really not that interesting. What IS interesting is what I’m trying to do –
Empower individuals with autism to receive the quality of care they need and deserve by creating practical, accessible, easy to use and affordable tools to convey their unique needs when they need them most.
As a single parent and "a one woman show" I’ve worn many of different hats in my life, but the one consistent theme has been my desire to make a real difference in real peoples’ lives. I take great pride in striving to make the world a better, more equitable and inclusive place, while at the same time holding firm to the belief that people of all abilities, backgrounds and experiences can and should do their part too.
What led to the creation of ICE4Autism?
Throughout my years of involvement in the autism community — starting with my advocacy work in the period leading up to the passage of California’s autism insurance reform law, my work with families and treatment providers as an insurance contracting consultant, my on-going volunteer service on the board of directors of a San Diego autism inclusion non-profit, and my involvement with the City of San Diego’s Community Emergency Response Team (CERT) — it’s always been the unique nature of autism that has been front and center. Which got me thinking: If each person with autism is unique, which they most certainly are, what happens in an emergency? Autism training is great, but even if first responders are aware that a person is autistic, what does that actually tell them? How can even the best trained first responders know the specific needs and sensitivities of any person they are called upon to treat/respond to? The reality is: They have no way of knowing unless we TELL them.
ICE4Autism is the only autism-specific in case of emergency mobile app. It’s the only app that enables autistic individuals -- and their families and care givers -- to communicate the specific information they want and need first responders, emergency and general medical personnel to know about them. One person may have sensory issues, while another may have a communication difference that, if first responders are made aware of, can completely change the interaction between them for the better.
What matters is that each person has needs and sensitivities that are unique and specific to them and ICE4Autism lets them communicate their individual needs effectively and efficiently.
The ICE (In Case of Emergency) concept is not mine, and it’s not new. In fact, Bob Brotchie, an experienced British EMT, conceived of the idea over a decade ago and has worked tirelessly to promote it ever since. What IS new and unique is that I developed the ICE4Autism in case of emergency (ICE) mobile app in collaboration WITH people with autism FOR people with autism.
What differentiates ICE4Autism is that it makes no assumptions or generalizations — the app totally does away with sweeping statements like "may not respond" or "may have difficulty understanding instructions." Instead, ICE4Autism lets each individual user communicate exactly and precisely what they need those interacting with them to know — it’s 100% personalized, detailed and specific. ICE4Autism does not require the user to wear anything like a bracelet, or to carry around "paperwork," like the forms recommended by some organizations that list only a fraction of the information that ICE4Autism stores for the user directly on their iPhone or iPad. The app can be easily updated when anything changes — like an emergency contact’s phone number, or a more updated photo of the user.
I like to describe ICE4Autism as an “ICE-Card 2.0” — a newer, and yes, better version of the traditional recommended wallet card.
The ICE4Autism mobile app "works" because it responds to both sides of the autism-first responder equation. Members of the autism community do their part by communicating their individual and unique needs AND first responders do theirs by responding appropriately to those needs. Great strides have been made in recent years with more and more law enforcement and emergency response agencies providing much needed autism education programs, but the individual interactions need the person specific, actionable information that ICE4Autism provides in order yield better outcomes.
What challenges do individuals with autism face during interactions with emergency personnel?
The challenges that individuals with autism face during interactions with emergency personnel are as unique as each person and as unique as each interaction, which is precisely the reason that ICE4Autism is so essential. If it were as simple as defining a specific set of challenges, then there could also be a standard, one-size-fits-all fix. But the reality is that due to the unique nature of autism coupled with the different types of interactions with emergency personnel — ranging from automobile accidents, health issues, traffic stops, domestic calls, wandering, and countless other possible scenarios — the specific challenges are also infinite. It is critical that each person be ready, willing and able to convey his or her unique and specific needs.
In addition to the person-specific challenges, there are also several "big picture" challenges that further accentuate the importance of being prepared to communicate individual needs in an emergency:
- Individuals with autism are seven to 10 times more likely to come into contact with emergency personnel than their neurotypical peers
- Repetitive/self-soothing behaviors, echolalia, communication and social differences, as well as sensory issues, for example, are often misinterpreted as signs of mental illness, evasive behavior, drug abuse and even guilt, resulting in inappropriate, often aggressive, responses by emergency personnel
- Emergency personnel, including emergency department physicians and nurses, report a self-perceived lack of competency in treating patients with autism, and in particular adults with autism
- Emergency room visits by adults with autism have more than doubled over the last five years
So what does all this mean? In the most practical terms, it means that an autistic person’s ability to convey his/her communication preferences and wishes, sensory issues, responses, and unique and individual needs can dramatically improve their treatment and the outcomes of the inevitable interactions with emergency personnel.
Are there efforts by emergency personnel and law enforcement to improve relations with individuals on the spectrum during crisis scenarios? What more needs to be done?
Absolutely! Training and education programs for law enforcement and emergency personnel have increased significantly over the last few years. And, many of the better programs incorporate the essential component of live interactions between the communities as a way to better acquaint them with each other.
Some regions have also established registries through which families can provide local law enforcement with information about their autistic family member in an effort to improve interactions with them should they arise. The difficulty with these registries is that many families are hesitant to provide authorities with information about themselves and their loved ones. In fact there is a growing body of anecdotal evidence that many families will not contact the police even in an emergency for fear of reprisal, judgement and concerns over the forced removal of the autistic relation from the home.
In order for things to really improve, at least two things need to happen: (1) the first responder community needs to get better education and more opportunities for exposure to members of the autism community; and (2) members of the autism community need to do their part to ensure that they are prepared convey their unique and specific needs so emergency personnel have the information they need to respond appropriately.
What is the biggest lesson or greatest eye-opening moment you've had while creating this app?
The greatest challenge I have faced, and continue to struggle with, is getting the word out to the autism community that ICE4Autism exists. I expected that the large autism organizations and support groups would be my best allies and greatest partners. It seemed like the most obvious thing in the world that as leaders in providing vital information and resources that benefit the safety and well-being of the autism community they would be knocking down my door to see what they could do to help. But, alas, this has not been the case.
On the flip side, the feedback and support I receive on a daily basis from actually autistic people, parents and advocates have been absolutely incredible!
Here are some of my favorites:
- Thank you so very much for all you…I am autistic adult, I wish you knew how wonderful this app is for autistic adults who are trying to live independently. Wonderful app! Thank you.
- The best ASD app out here so far! Better than the health app on my phone
- Great app - just got for my daughter - working on driver's license (permit only). Best $2
- I worry that my boys won't know how to have a conversation with a first responder. This is an excellent option!
The knowledge that real people are benefiting from the app gives me the energy to keep up the pace of work that’s required to make a go of it.
What's next for ICE4Autism, and for you in this journey of autism advocacy?
That’s really a two part question: There’s "what I hope for" and what "I plan for."
What I "hope" for the future of the ICE4Autism app is that more and more autistic individuals, their families and caregivers will learn about its existence and will embrace the important role they play in advocating for themselves by being prepared to provide first responders and medical personnel with the specific actionable information needed to interact and treat them with the dignity, respect and person-centered care they deserve. I also hope that the app will get the attention it deserves from the large autism organizations and that they will work with me to get it out to everyone that can benefit from it. My ultimate goal is to improve the quality of interactions between the emergency response and autism communities.
What I "plan" for the future of ICE4Autism is to keep my nose to the grindstone. When I first started working on the ICE4Autism app I had no idea how involved (and expensive) it would be. I’d love to get an Android version out next and then a "family" version that would enable users to use the app for several family members simultaneously. For the time being, though — unless there’s someone out there that’s willing to finance these projects — I’m just going to keep on "rowing" with the knowledge that change doesn’t happen overnight and that the most worthwhile things in life aren’t usually the ones that come easy.
Links to more information and where to get ICE4Autism
ICE4Autism on the App Store: https://goo.gl/tEKyfq
The ICE4Autism Website: www.ICE4Autism.com
ICE4Autism in the Press: http://www.ice4autism.com/#!ice4autism-media/c10fr