United States – On World Autism Awareness Day, April 2, the ICE4Autism mobile app was launched born. ICE stands for In Case of Emergency, and is widely known and used with the first responder and emergency medical community. The website states:
‘Specially developed in collaboration with people on the spectrum for people on the spectrum, ICE4Autism stores and communicates YOUR unique sensitivities and special needs.’
We wanted to learn more about how this app can be used by individuals with autism and more about the inspiration and thought processes behind it. Wanda Refaely kindly agreed to answer so e of our questions and our interview with Wanda can be read below.
Where did the idea or the #ICE4Autism app come from?
My degree in education gave me a solid base and my work through ATPIAN gave me excellent opportunities to gain insight into the world of autism. But, where did the idea really come from? It was an “aha moment” based on my focus on the unique nature of autism. The idea seemed so obvious to me that I was sure someone else had already thought of it – but they hadn’t.
Based on the understanding that each person’s autism is as unique as they are, I became concerned with what might happen in an emergency. Even if a first responder was aware that a person has autism, he still wouldn’t know what that particular person’s autism means. What ICE4Autism does is remove the barrier between the patient’s unique needs and the providers’ ability to access the information they need to provide proper, needs-conscious, patient-centered care.
So what ICE4Autism does is provide people on the autism spectrum (and their loved ones and caregivers) with a tool through which to provide first responders and medical personnel with actionable information about themselves quickly and effectively.
I am not a “techy” in any way, shape or form, so when I got the idea for the ICE4Autism app, the “tech” side of it was totally foreign and 100% outside my wheelhouse. Truth be told, even considering moving forward was a seriously intimidating prospect. Luckily, my brother was in town at the very early stages of the project, and he IS a “techy”. I didn’t care that his expertise was in a completely unrelated field, he was the only person I knew in that “world” and he was willing to help. I dragged him with me to an app developers’ MeetUp and the learning process began.
I ended up finding an absolutely wonderful, bright and very patient app developer who helped translate my vision into the reality of ICE4Autism. I knew what I wanted the app to look like, what I wanted it to do, and how I wanted it to work and he made it all happen.
There were some serious bumps in the road – like the first developer I worked with who did part of the job and then informed me that what I wanted “couldn’t be done”. The good news was that I had already learned enough to know that that was simply not true. The bad news was, I had lost several months of precious time and still did not have a finished app.
In the end, though, the app was completed and in time for launch on World Autism Awareness Day. I had it in my head that that was really important – I felt like ICE4Autism should be part of the movement to ensure that people not only know about autism, but acknowledge, accept, and respond appropriately to each person with their own unique autism.
Ease of use was one of the most important parts of the app development project. In fact, in the initial “specs” document I wrote up in my search for a coder, the very first item noted was: “User experience must be straight forward and uncomplicated — so anyone can use it (even people with NO tech knowledge or experience).”
It was of the utmost importance to me that figuring out how to use the app not become a distraction to its value. What matters is the information the user enters about him/herself into ICE4Autism and the efficient and easy access to that information by first responders, emergency personnel, ER doctors and nurses.
The app’s ease of use and clarity are what make it a useful, practical and effective tool.
In addition to the app’s easy to use design, I also created a VERY detailed Step-by-Step User Guide that walks the user through each and every step of entering their personal data and actually using ICE4Autism. The User Guide can be found on the ICE4Autism “User Guide & FAQs” page of the website and can be downloaded for reference purposes at any time.
How does it work?
ICE4Autism is a 21st century, tech-based version of the well-known (and highly valued) wallet ICE (In Case of Emergency)-card. Just like you would write information down on a piece of paper and put it in your wallet, so you enter the information into the ICE4Autism mobile app.
There are separate widgets within the app for different types of information including:
• Basic information – such as name, date of birth and blood type
• A photo
• Special instructions
• Alert my Emergency Contacts – sends a text message to the person’s designated emergency contacts alerting them that the individual may be involved in an emergency. The text includes a link to the person’s location pinned on Google maps
• My autism – including sub-sections for details about how the person communicates and prefers to be communicated with; any unique behaviors or triggers; and additional important treatment information
• ICE Audio – the user (or a family member or caregiver) can record a message with information and instructions for first responders in case of emergency or for when the person feels he/she is unable to communicate his/her needs
• Medications – including information about dosage and frequency
• Health Conditions
• Allergies and Sensitivities – including a place to describe the person’s allergic reaction and how best to respond
• My Doctors/Providers
• Emergency Contacts; and
The app includes lots of sample text for reference purposes because sometimes it’s hard to think of what to include.
The Lock Option enables the password protection of the information the user enters in the ICE4Autism app. It ensures that nothing is changed without the user’s permission. So, while the data stored in the app can be viewed in the locked position, but it cannot be changed.
Absolutely! ICE4Autism can be used anywhere there are iPhones and iPads. In fact, every feature (except the “Alert my Emergency Contacts”) can be used without the need for any sort of cellular or Wi-Fi service. All the information the user enters about him/herself is stored directly on the device making it immediately accessible whether the person is at the emergency room or in the mountains.
I was very careful in the design to ensure that even such entries as phone numbers were not limited to American standards — three digit area codes and seven digit telephone numbers. Making ICE4Autism available for use by people around the world was most definitely part of the development process.
Can both carers and the individual with autism use the app?
Yes! Though ICE4Autism was intentionally designed for use by individuals with autism, it can also be used by families, loved ones and caregivers. The underlying concept of ICE4Autism is that the more information first responders and other emergency staff have, the better and more needs-conscious the care and treatment the individual will receive. So with that in mind, it makes just as much sense that, for example, a parent would have all of their child’s unique needs stored on their device; or that a caregiver charged with ensuring the care and safety of a client would have his/her information readily available “just in case”.
Can you give any examples of how the app has helped an individual?
Despite the app having launched only three weeks ago, I have already received some excellent feedback. ICE4Autism is providing “peace of mind” and a sense of greater confidence.
A woman who purchased the app for her 16 year old son wrote:
“Now I have been a strong advocating voice for TJ forever, but knowing that he has a voice in the horrible case that I can’t use mine? Peace of mind does not even begin to express how this makes me feel.”
And the mother of a 19 year old with autism wrote:
“As a parent of a 19 year old with autism and the director of a program that serves adults with autism and related disabilities, I LOVE your app. My family will use it and I will share it with the families in our program.”
Absolutely! I have big plans for the future of ICE4Autism. First, it is my sincere hope that the people all around the world who can benefit from having the app will get it. At a reasonable one-time cost of only $1.99 (or the equivalent in each country’s app store), it’s less than many people spend on a cup of coffee. And, it’s the type of thing you hope you’ll never need, but will be glad you’ve got it if the need does arise.
I have reached out to many of the large autism organizations and am hopeful that they will help in getting-out the word about ICE4Autism. After all, sharing important resources that benefit the autism community, particularly when it comes to safety and quality of care, is in everyone’s best interest.
And, next on the development agenda is an Android version of ICE4Autism. I would have liked to do this from the get-go, but, unfortunately, the “real world” got in the way. I’ve got some ideas for additional new apps, but for the time being, I am focused on sharing and informing the autism community about ICE4Autism, an important tool I believe everyone should add to their arsenal. So, for now, everything else is taking a back seat.
Is there anything else that you would like to share with our readers?
Yes, it’s important to me that people know that the idea for the ICE4Autism came from a person and not from a big company or some app development firm with an ulterior motive. Bottom line is that with the app I hope to contribute to a better world in which everyone gets the quality of care they need and deserve and I believe that ICE4Autism can help make that happen. I believe that there is a real need for the app and I believe that it can make a real difference in real people’s lives.
We would like to thank Wanda for taking the time to answer our questions.
In 2010 Wanda Refaely was hired by a California lobbyist who represented several coalitions of individuals on the autism spectrum, their families and providers. Wanda worked to make sure that these individuals’ needs were properly represented, as California’s autism insurance reform law (SB946) was being drafted, edited, reviewed and, ultimately, passed.
Wanda told us that this new law required that private insurance “pay for the assessment and treatment of autism and recognized BCBAs as ‘legitimate’ treatment providers, which they had not been until then.”
She was then approached by an agency and asked to help them through their insurance contracting process. During this time she realized that other providers would need help, too and she established ATPIAN – Autism Treatment Providers’ Insurance Authorization Network. http://www.atpian.com/
Wanda told us that:
“ATPIAN is a consulting firm dedicated exclusively to assisting autism treatment providers with their insurance credentialing, negotiating, contracting and audit needs.”
Wanda further told that she took “every opportunity to engage directly with individuals on the spectrum and their families in an effort to learn everything I could.”
And she is not done yet.
“I think the most important thing I’ve learned is that each person’s autism is unique.”
In 2014 Wanda found a way in which she could help families affected by autism. She developed a mobile app that could help individuals with autism to live more independently and safely. She focused heavily upon emergency situations and the way in which these individuals would react within an emergency and how those who assist and help them could be better informed.
The ICE4Autism app can be found on the Apple iTunes store here https://itunes.apple.com/us/app/id969601780
The ICE4Autsm website can be found here http://www.ice4autism.com/
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