ATU295 – “Here we go” apps to prepare children with autism for medical procedures – Norah Johnson & Tanvir Roushan

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Your weekly dose of information that keeps you up to date on the latest developments in the field of technology designed to assist people with disabilities and special needs.

Norah Johnson & Tanvir Roushan – Apps to prepare children with Autism for medical procedures
21 Chrome Extensions for Struggling Students and Special Needs http://buff.ly/2k0PqXU
16 Microsoft Accessibility sessions slated for CSUN 2017 http://buff.ly/2k0IERS
New IT accessibility rules catch up to 17 years of changes http://buff.ly/2jLKaIr
Blitab is a Braille device for visually impaired people http://buff.ly/2k0Lg2o
Camera Mouse http://buff.ly/2iRKpTY
App: Family Locator | www.BridgingApps.org

X-ray: Imaging, here we go!
Ipad application for medical imaging available at the Apple Store https://itunes.apple.com/us/artist/marquette-university/id493609590
CT Scan: Imaging, here we go!
Ipad application for medical imaging available at the Apple Store https://itunes.apple.com/us/artist/marquette-university/id493609590
MRI: Imaging, here we go!
Ipad application for medical imaging available at the Apple Store https://itunes.apple.com/us/artist/marquette-university/id493609590
Nuclear Medicine: Imaging, here we go!
Ipad application for medical imaging available at the Apple Store https://itunes.apple.com/us/artist/marquette-university/id493609590
Publications:
Johnson, N., Bree, O., Lalley, E., Rettler, K., Grande, P., Gani, Md., & Ahamed, S.I. (2014) Effect of an IPAD application for medical imaging procedure preparation for children with autism spectrum disorder. Journal of Pediatric Nursing, 29(6), 651-659. DOI:10.1016/j.pedn.2014.04.007
Johnson, N. & Bree, O. (2014) Social script iPad application versus usual care before undergoing medical imaging: Two case studies of children with Autism. Journal of Radiology Nursing, 33(3), 121-126.
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——-transcript follows ——

TANVIR ROUSHAN: Hi, my name is Tanvir Roushan and I am a master student at Marquette University.

TANVIR ROUSHAN:  This is Nora Johnson. I’m an associate professor in the College of Nursing at Marquette University in Milwaukee, Wisconsin, and this is your Assistance Technology Update.

WADE WINGLER:  Hi, this is Wade Wingler with the INDATA Project at Easter Seals crossroads in Indiana with your Assistive Technology Update, a weekly dose of information that keeps you up-to-date on the latest developments in the field of technology designed to assist people with disabilities and special needs.

Welcome to episode number 295 of assistive technology update. It’s scheduled to be released on January 20, 2016.

Today I have a conversation with Nora Johnson and Tanvir Roushan about their Here We Go apps. They are all about helping kids with autism get prepared for medical procedures. Sometimes those are intimidating, and going over those in advance can really help with success. Also Microsoft has 16 accessibility sessions coming up at the CSUN conference in springtime. There are some changes happening at the federal level with the access board that are finalized about IT accessibility. And the CES show was very much abuzz with Blitab braille device that’s going to be around $500. A story about camera master now has over 3 million downloads. And an app from BridgingApps called family locator.

We hope you’ll check out our website at www.eastersealstech.com, give us a call on our listener line at 317-721-7124, we love to have your questions and your comments, or shoot us note on Twitter at INDATA Project.

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If you like this show, you should check out one of our others, Accessibility Minute, where we spend about a minute talking about AT stuff. Recently we’ve covered Ask My Buddy for Amazon Echo, Wink Hub 2, Smart Thing Laundry Ball, Peapod postural support chair, and dignity mugs. There is much more. Head over to accessibilityminute.com.

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Here at the INDATA Project, we get excited about chrome extensions that are assistive technology. We found a blog post on Control-Alt-Achieve that lists 21 of them. Among them is the read and write gold for chrome, speak it, announceify, just read, open dyslexic, beeline reader, a T-bar, magic scroll web reader, read line, visor high contrast, and more. There is a whole grouping of extensions for things like text to speech and readability as well as reading comprehension, focus, and navigation extensions. I don’t have time to list them all here but I will pop a link in the show notes over to Control-Alt-Achieve.com where you can read about these 21 Google tools for special needs. Check our show notes.

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It looks like there are going to be 16 Microsoft accessibility sessions at the upcoming CSUN conference. There is a blog post at the Microsoft accessibility blog by Dr. Megan Lawrence that talks about the fact that during the February 27 through March 4 CSUN in San Diego, they have a whole lineup. Some of the sessions include Windows narrator, what’s new in Windows 10, what’s new with Microsoft office 365, and how it helps advance digital inclusion, Skype and Skype for business for inclusive meetings, site sign, an example of open source accessibility at Microsoft, what’s new in Windows 10 for accessibility, new reading and writing tools in word for uses with learning disabilities, accessibility offering made easier in Microsoft office 365, Excel tips and tricks, and leveraging artificial intelligence to augment visual awareness. They talk about an Easter egg of sorts. They say we will wrap up the conference with a special session not included in the program. It is called using office 365 to create learning experiences in a special education setting. Those are just a few highlights of the sessions that caught my attention, but if you would like to see the full list of those sessions, especially if you’re going to be attending the CSUN conference this spring, I’ll encourage you to check out our show notes where we’ve got a link over to Dr. Lawrence blog post listing all of the details, times, everything you need to know to participate in those Microsoft accessibility sessions.

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We’ve been following along for a while now the fact that the US access Board is working on IT accessibility rules. The access board makes sure that the physical world is accessible, but has over the last several years been working on rules to make sure that the federal government spends money on IT that is also accessible. A lot of other organizations tend to fall in line when the federal government makes accessibility part of their procurement rules. We’ve reported in the past on the preliminary rules, but the final rule came out on January 9 after almost a decade of work. Tim Creek and who is a senior accessibility specialist for the access board is quoted as saying, “We were adapting our recommendations to the changing technology. Some of this had not occurred when the committee was in session, so we had to adapt our standards for the changing market conditions. I think we have succeeded in doing that in the final rule.” That quote comes from an article on Federal news radio where they go into some of the details about the changes. They also talk about the fact that the access board is going to have two webinars coming up on the new 508 and 255 rules that are related to these IT accessibility standards. They are going to be on January 31 at 1 PM Eastern time and on February 2 at 2:30 PM Eastern time. I’m going to pop a link in the show notes over to the federalnewsradio.com article that not only talks about the details of this but also has information about those webinars. Check our show notes.

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There has been a lot of buzz from the Consumer Electronics Show, or CES, in the last few weeks now that it has wrapped up. One of the main takeaways seems to be a braille device called Blitab. It’s a lower-cost alternative to some of the refreshable braille devices that are out there. Usually a braille no takers going to cost you thousands of dollars. The creator of Blitab says it’s going to cost around $500. It’s basically an android tablet with a braille display that’s different. Instead of the traditional piezo-electric cells that bounce up and down to make braille as you go, this one is using a display of small bubbles that change the state to create braille dots. They promise perhaps even raised line drawings for things like maps. It’s causing a lot of buzz. I haven’t had a chance to learn a whole lot more about it would love to hear from listeners on that. If you have had experience with Blitab, give us a call on our listener line. We would love to hear from you. The number is 317-721-7124. Or shoot us a note on Twitter at INDATA Project. Let us know what you think about this. I’ve had people ask me about it and I’m excited to see, are we really in the state where we are going to have a sub-$500 braille tablet. That’s exciting stuff. I’m going to stick a link in the show notes over to the tech crunch article that shows some photographs and gives you more details. Check our show notes.

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From our friends over at RESNA, there is an article in the Boston Globe website. The title says, “Software program catches on with disabled individuals.” In our world, we’ve known about the camera mouse for a long time. Boston College started this program in 2007 as a free downloader. Developer James Gibbs of Medfield hoped that it would be helpful for folks with disabilities who use assistive technology. I know we’ve had some experience with it here. It’s exciting that it’s been almost 10 years since camera mouse came out, and it had around 3 million downloads. The basic functionality is that it uses the WebCam on your computer and then tracks head movement to control the mouse. They got users and 128 countries, and I’m going to pop a link in the show notes or you can find a link where you can download camera mouse for yourself. A requires windows and a WebCam but other than that it is pretty much ready for use. Check our show notes.

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Each week, one of our partners tells us what’s happening in the ever-changing world of apps, so here’s an App Worth Mentioning.

AMY BARRY:  This is Amy Barry with BridgingApps, and this is an app worth mentioning. Today I’m sharing the Family Locator by Life360 app. Life360 is the world’s leading location sharing app. Great for children, teens, and adults, Family Locator is an intuitive tracker app to keep family, friends, and caregivers connected. Life360 runs on your mobile device and allows you to view your family members on a map, communicate with them, and receive alerts when your loved ones leave and arrive at home, school, or work. Life360 allows you to create discrete circles for the important people in your life. You can share your location with whom you want, when you want, get automatic notifications when family and friends arrive at their favorite places, and you can indicate one to one or two and a tire group with the free in app messaging. One of the features of Life360, circles, allows you to organize were families and friends into unique groups. Location, messages, and places are all tied to your circles, see you can check in with your grandparents circle, or if you need your daughter to pick up milk on the way home from school, you just message your family circle. You can also pause location sharing to any circle at any time, which is perfect for caregivers who don’t need to share their location 24/7 or friend one who needs a little “me” time. If you often find yourself texting someone like your kids or a family member, did you get there okay or when will you be home, Life360 is for you. You can create zones around your home, work, school, or anywhere you visit regularly. When someone in your circles arrives or leaves, you get a notification letting you know. A BridgingApps family uses the Life360 app and finds it invaluable. Prior to using the app, their teen son with autism wanted away from home. It took the community of law enforcement nearly 4 hours to find him safely, miles away from where he was last seen. Now he carries an older version of an iPhone with the Life360 app. Now if he leaves the house, they are immediately alerted on their device and are able to track his movement and even get directions to his location within seconds. Life360 is free to download and use. The premium version adds a 24/7 life advisor, emergency roadside assistance, stolen phone protection, unlimited places, and more. The subscription is available for $4.99 per month or $49.99 a year. The app is available at the iTunes and Google play stores and is compatible with iOS and android devices. For more information on this app and others like it, visit BridgingApps.org.

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WADE WINGLER:  You can’t listen to the show very long before you are familiar with the fact that we are all about the apps. We are interested in how mobile technology and the various app platforms that are out there can really do some pretty impressive stuff when we talk about folks who have various kinds of disabilities. This show and our guests are no strangers to apps that are targeting specific tasks related to people with autism, people on the autism spectrum. But this one is just a little bit different in that it is very focused and how people with autism might anticipate or deal with medical procedures and some of the challenges and tough situation that might go along with that. I am super excited to have Dr. Norah Johnson who is a professor at Marquette University College of Nursing, and Tanvir Roushan who is a graduate research assistant also at Marquette. How are you today?

NORAH JOHNSON:  Fine, thanks.

TANVIR ROUSHAN:  Very good. Thank you.

NORAH JOHNSON:  Happy to be here.

WADE WINGLER:  I’m so excited to have a conversation with you guys today. We get excited about apps here. We are very interested in the autism spectrum disorder and help people who were on the spectrum deal with apps. I’m fascinated with what you guys are doing in terms of a medical setting. Before we jump into the nitty-gritty of our conversation, can you tell me a little bit about your backgrounds, academic and professional, and then what motivated you to come work on a project like this?

NORAH JOHNSON:  I’ll go first. I’m a professor at Marquette University in the College of nursing. My background is as a nurse and nurse practitioner working in neurology and neurosurgery. I also have a child with autism. I created some of these, what we call social stories, for him when he went through medical procedures, and naturally have been exploring the area in my research as well at the college of nursing.

TANVIR ROUSHAN:  My background, undergraduate education was in computer science and engineering. As a graduate, I worked as a software developer for a couple of years. Now I have moved on to pursue my Masters degree at Marquette. I work at the Ubi-comp lab where our primary research goals are to develop mobile health applications. That’s where I found my interest to work on this application for reducing anxiety for autistic children.

WADE WINGLER:  Tanvir, is this your first app development in the space of disability apps and assistive technology?

TANVIR ROUSHAN:  I got other projects that I also work in the health area, but particularly with anxiety and autistic children this would be my first application.

WADE WINGLER:  Great. I’m going to get out of your way here and ask you to tell me a little bit about the project that you’re doing and the current status of the project.

NORAH JOHNSON:  This is a research project that’s grown over several years. I have a son with autism, and I found that in school they were using something called a social story which is a hypothetical scenario with pictures, words, and sounds that helps foreshadow anxiety producing or stressful procedure or something in the child’s day. I also was working as a nurse practitioner and noticed that none of these types of social stories were you at available in the healthcare setting. Parents were trading their own sometimes. I created my own. I found them to be very useful. I started trading books, and then with the hope of some grant funds was able to turn them into apps. By now the apps have been studied in a research study with a control group. We saw improvement in the child’s ability to get through procedures faster – we call that throughput. We also noticed that they had less anxiety as measured with vital signs pre- and post. And that the parents also had decreased anxiety about their child going back as measured with an anxiety update through an anxiety tool. We were pretty excited about our findings and were able to roll out four of these individual apps on Marquette University’s Apple Store. The next stage of the project is going to combine the apps into a single app. That’s where we are at.

WADE WINGLER:  Tell me a little bit about the use case and what the apps look like and how they work.

NORAH JOHNSON:  The app is a series of photos of a child going through this scenario. It has a script under it and buns that read the script. So the child works through the different screens of the app for shattering what all the steps of the procedure are going to be, was going to be there, and what the sound and sensory issues will be along the way. Usually the last screen ends with some sort of finishing and a reward. The script is such that the child knows how to react. It prepares them if it’s going to be cold or noisy. We used terms like “might” and “sometimes”. And it gives them something to do, like that’s okay, I can count to 10, or that’s okay, my mom will be with me. It prepares them for the sensory and emotional uncertainty of these procedures.

WADE WINGLER:  Tell me a little bit about the common procedures that are addressed in your app and some of the common anxieties. I think my audience in general has some familiarity with autism spectrum disorder, but tell us what are some of the common issues that you are addressing.

NORAH JOHNSON:  Children with autism have difficulty communicating, socializing, and repetitive behaviors. They tend to ramp up their repetitive behaviors and sometimes even challenging behaviors when they are anxious and don’t know what to expect. I have a colleague that talks about working in healthcare as what we need to do to label the obvious. What’s obvious to us isn’t always obvious to them. We say we are going to walk down the hall. There might be people. It might be loud. That’s okay, my mom will be with me. We’ll go in the room. It might be cold. That’s okay, I can ask for a blanket. It’s more the issues with communicating and socializing. What someone with autism might think about in their head or think I can get through this, a child with autism might act out more and not know how to get through. We script their ability to get through these procedures. Right now the procedures that we concentrated on word x-rays, CAT scans, MRI. We have others that we don’t have in the app form yet. That’s a project to combine them all. We have pictures taken for blood draws so we are going to develop all of those. Things for at the hospital.

WADE WINGLER:  Is it fair that I am assuming you chose those scenarios based on prevalence and the stimulus and likelihood that they might be challenging?

NORAH JOHNSON:  Correct. The radiology department was the one that had a lot of trouble with getting kids through these procedures. I worked in the education department at Children’s Hospital, and we develop staff training and had departments coming to us asking to help their staff learn to work with kids with autism in their clinics because they were canceling procedures or just having kids having trouble getting out of the cars, down the noisy hallways, and different areas. Dental, x-ray. A lot of kids with autism will have issues with their gastrointestinal system or will get constipated, and they’ll end up having a flat plate x-ray. Or they might have an MRI to look for a clog. Those are the natural ones to go to first.

WADE WINGLER:  That makes a ton of sense. I’ve seen some apps that do some video monitoring and prompting things, like here is what it’s like to get a haircut or what is like to go on a bus. Obviously this is a medical setting. Are there other differences between what you are doing versus some of the other more common video modeling apps?

NORAH JOHNSON:  These social store apps are based on Carol Gray’s work. Pictures with words. There is some research done showing that 10 simple pictures with words is an easier way than doing a whole video. We do have one at that we created for going into a research study for an MRI. We do have video footage in that. It’s a video going into the scanner and audio of the sound the machine makes. Video modeling is also a good technique— social storybooks are pretty popular. For a nap it was pretty convenient. The other thing about that is a video is set whereas an app we can change the wording pretty easily.

WADE WINGLER:  What are you hearing from users, for people with autism, their family members, and healthcare providers?  What kind of feedback are you getting?

NORAH JOHNSON:  I personally have used them with my son, and I had different members of the Autism Society to have used them as well. They find that it is remarkable just how compliant children with autism can be to just know what’s going to happen and how they’re going to deal with it. I think there is still a lot of skepticism in the medical community that these work, but they really do work. The study that I did that’s published in the Journal of Pediatric Nursing that showed the outcomes is pretty powerful. The research study has really helped us give credibility to these applications because we had a control group and showed differences and decreased challenging behavior in the group to have the app, decreased parental anxiety, faster throughput with the app.

WADE WINGLER:  Let’s talk a little bit about the technical side of things. Talk to me about availability, platform, cost, and those things are related to the app.

TANVIR ROUSHAN:  There were different pieces of the application over time. What we are planning to do now is to bring that under one application that would be a standalone app. We will be targeting both iPads and iPhones. The legacy applications were built — what we are planning to do for the new combined application is to build that with Swift 3. We also plan to have a database connection to the application this time. In the future, we might expand the application to where we would be able to manage some medical history for different users. We plan to have a database connection to the application, keep some records of the users, and that’s it.

NORAH JOHNSON:  Currently are apps are free at the Apple Store. The app for going to an MRI for a research study – that’s for healthy children with autism – that one is patent pending, is copyrighted. That one is not available at present on a platform yet. It will possibly be a standalone part of this combined at that we are working on currently. I know what’s available are for individual apps that are free social stories at the app store. Eventually the thought is, because we’re putting so much work into this, that there will be a charge so we can maintain it and update it. There’s already some interest from some hospitals that they buy an institutional license to it so the family members wouldn’t have to pay but that the hospital could absorb the cost.

WADE WINGLER:  That’s great. I love that model. We talked in the preinterview a little bit that if people wanted to download the app and try them, the URL’s are tricky. So you are going to send me an email so that I can pop those directly into the show notes.

NORAH JOHNSON:  Correct.

WADE WINGLER:  If people want to learn more in general — if they want to try the app, they can get the link from the show notes. But if they want to learn more about your research and the work you’re doing, what would you recommend in terms of website or contact information or those kinds of things?

NORAH JOHNSON:  Currently my email address is norah.johnson@marquette.edu. I do have several publications. What I can do is send you the references for the publications as well so you can read about it.

WADE WINGLER:  I’ll pop those in the show notes as well. I appreciate both of you taking time out of your day being with us. I’m excited about what you’re doing with apps and I can’t wait to get it downloaded and start missing with them myself and encourage folks in the audience to check the show notes and try them out for themselves. Thank you so much for being with us today.

NORAH JOHNSON:  Thank you.

TANVIR ROUSHAN:  Thank you.

WADE WINGLER:  Do you have a question about assistive technology? Do you have a suggestion for someone we should interview on Assistive Technology Update? Call our listener line at 317-721-7124, shoot us a note on Twitter @INDATAProject, or check us out on Facebook. Looking for a transcript or show notes from today’s show? Head on over to www.EasterSealstech.com. Assistive Technology Update is a proud member of the Accessibility Channel. Find more shows like this plus much more over at AccessibilityChannel.com. That was your Assistance Technology Update. I’m Wade Wingler with the INDATA Project at Easter Seals Crossroads in Indiana.

***Transcript provided by TJ Cortopassi.  For transcription requests and inquiries, contact tjcortopassi@gmail.com***

 

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