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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.
Show Notes:
ALS Residence – Steve Saling (Founder and President of the ALS residence Initiative)
Amazon, Google, Facebook, IBM, and Microsoft form AI non-profit | ZDNet http://buff.ly/2dOXUmJ
App: Read2Go www.BridgingApps.org
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WADE WINGLER: Hi, I’m Wade Wingler but today my guest is Steve Saling who is the founder and president of the ALS Residence Initiatives, 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 280 of Assistive Technology Update. It’s scheduled to be released on October 7 of 2016.
Today my guest is Steve Saling who is the founder and president of the ALS Residence Initiative. We are going to talk about the place where he lives that is a space specifically designed for people who have ALS. Also an interesting new piece of breaking news about Amazon, Google, Facebook, IBM, and Microsoft, joining together to form a nonprofit organization dealing with artificial intelligence. Our friends in college over at BridgingApps have an app review called Rita to go; and we hope you’ll check out our website at www.eastersealstech.com, send us a note on Twitter at INDATA Project, or call us on our listener line. We love to hear from you. We like to hear your questions, comments, feedback. You can leave a message on that was the box for us. The number is 317-721-7124.
I was fascinated when I found a headline that read, “Amazon, Google, Facebook, IBM, and Microsoft form in artificial intelligence nonprofit.” It’s called the partnership on artificial intelligence to benefit people in society, or the partnership on a guy in short, yet all those heavyweights are involved. Microsoft has experience in artificial intelligence galore; Cortana is one of the examples of their work in the area recently. Facebook is also been doing artificial intelligence to help identify better advertising strategies, but not long ago they did automatic alt text which benefits folks who use screen readers, so they kind of have some AI things going in terms of assistive technology. IBM Watson is famous for its ability to use artificial intelligence. An Amazon echo, or Alexa as folks often call the device, uses artificial intelligence to make the user experience better. This is a well-funded nonprofit partnership that is a collaborative effort between all these big hitters. What they are trying to do is address the need for public education about artificial intelligence, some open dialogue about it, and also some way to identify opportunities and solve problems specifically in the area of ethics related to artificial intelligence. They specifically indicate that they are not interested in lobbying or making policy or being a standards organization or regulatory body, but they are just trying to help us as a society as you move ahead deal with AI in a way that is open and transparent and focused on ethics. It’s sort of a long and good article in ZDNet magazine. I’ll pop a link in our show notes to that so you can read it. Check our show notes.
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 am sharing the reader to go app. The reader to go app is and accessible e-reader for the iPad, iPhone, and iPod touch. It was designed to be an accessible reader for those with print disabilities such as dyslexia or other processing disorders. People who are blind, has visual impairments, or have physical disabilities can also benefit from using helpful features of this app. Though it has a text-to-speech function for reading aloud, it can also be beneficial for anyone who needs flexibility in adjusting the print or contrast of reading material. There are so many things that we love about the reader to go app. Using Wi-Fi, students can download books in just a matter of seconds. They can adjust the font size, select the voice that reads to them, as well as the speed of the voice that reads aloud. Users can also change the background and letter color of the books which is a big plus for those students who can focus best using a specific color. This app also features highlighting ability of the word or sentence being read. We noticed that students gained vocabulary quicker with the use of this app. Another feature that we truly appreciate this that, in addition to fiction and nonfiction books, students are able to download textbooks. The ability to access textbooks using this e-reader has been especially helpful with our middle school students in science and social studies. Though it does not have the illustrations, which is one downside, it does read the material for them, which allows them to better understand the content. Read to go is available for $19.99 at the iTunes Store and is compatible with iOS devices. For more information on this app and others like it, visit BridgingApps.org.
WADE WINGLER: So today’s interview is a little different than the format that I normally do. I’m going to be talking with Steve Saling who is the ALS residence in Kelsey Massachusetts and is a person with ALS who uses augmentative and alternative communication as his primary mode for communicating with the world, at least in a verbal way. Rather than having Steve on the system, on Skype or whatever, life and going back and forth with questions, we decided that it might make more sense for me to email him a list of questions and then allow him to record and sent his responses back to me in voice files that I’m going to stitched together into an interview where you can hear the responses. Am I going to pretend to ask the questions live to Steve and pretend that he answered them life, but I’m going to read the question and let you listen to the responses that Steve sent to me and audio files. I think we’re up for a fascinating interview today, and in fact this is going to be one of probably a couple of interviews we do with folks in a similar fashion. I’m excited about this talk today. Our first question that I have for Steve, and I’ll plug is a response in, was how did you become involved in the ALS residence project.
STEVE SALING: It is like they say, necessity is the mother of invention. I was diagnosed with ALS in October 2006, not long before the first iPhone was released. I assumed at the time that there would be a lot of whizbang gadgets that I would get to play with in the new category. As a disabled person, I have always liked technology and using a computer to do my work. I used auto CAD daily in my career as a landscape architect. I still use autocrat today to design objects to be reprinted. I am just much slower. Anyway, I was kind of shocked that technology was not being used to provide the freedom and independence that I knew was possible. I went to visit a guy with ALS who I met on MySpace. He was my age but already on a vent. The place looked like a normal hospital. My new friend lived in a hospital? He didn’t even get the bed by the window in the room he shared with another patient. He never got a shower, having only sponge baths and really get out of bed. I could not and cannot imagine myself living in those conditions. It is my nightmare. I determined that I would never end up like that. As fate would have it, I would meet Barry who wanted to do something. It just so happened I had something special that needed doing. We partner together to create the first fully automated vent ready residential home for people with ALS was the most compassionate, 24/7 skilled care. The rest is history.
WADE WINGLER: My next question was, especially for folks who aren’t familiar with alternative and augmentative communication systems and how they are used by folks with ALS, I asked the question of how does your communication system work.
STEVE SALING: I use a really different communication program called Dasher 5.0. It is open source and a free download. It looks more like a videogame and a keyboard. There is no clicking, so I can and do navigate my way through the alphabet all day without strain on my eyes. I use a head mouse to control my computer, and I’m told I type on Dasher really fast. It has been a game changer for me.
WADE WINGLER: For my next question for Steve was about his role during the process of finding and establishing and trading the actual ALS residence.
STEVE SALING: I am a guy with a stick poking the frog. I am an advocate for my housemates when they have problems. I encourage my housemates to do crazy things like jumping out of an airplane and, when necessary, prodding the administration that it is a risk worth taking. I have made a career out of advocating for other nursing homes to follow our lead. So far there are two trying. My goal in life is for the medical industry to recognize that ALS is no longer and invariably fatal disease, but that to the time the application of technology and appropriate care given, ALS can be a chronic condition that allows for a good quality of life. The ALS residence is my tool to make that case.
WADE WINGLER: My next question was about where is this place and what makes it different from other facilities that might be providing services to folks who have ALS.
STEVE SALING: There are now two ALS residences, and they are both located in the Leonard Florence Center for living in Chelsea Massachusetts. It was the first urban greenhouse ever built. A greenhouse is the gold standard for a truly residential home that provide skilled nursing services 24/7. A greenhouse had always cared for elders until CEO Barry Berman had the vision of specialty homes with a younger disabled population who often are the only under-60 person living in an elderly facility. So being an urban greenhouse was a first as where the specialty green houses for a younger disabled population. But the uniqueness of the ALS residences doesn’t stop there. Never before has there been long-term care facilities specializing in the care of people with ALS and people in the ALS residences are not warehoused in a bad dust into a lifetime of bed baths. I get dressed and in my power chair every day and have real showers. The same for every one in my house, even my housemates on a ventilator. To top it off, my house is fully automated with a peak automation system. Technology brings my house to life.
WADE WINGLER: As I was reading and researching about the ALS residence, one of the concept I find myself fascinated with was one called the greenhouse concept and how that is really different than something that are considered an architecture, especially in more medical care facilities. Administration was about that, the greenhouse concept.
STEVE SALING: The two criteria I had before agreeing to work on the project were that it be fully automated and provide vent support to those who need it. The CEO Barry Berman agreed to those conditions in our very first meeting. I was so concerned about living in a nursing home. Like everyone, I had a pretty dismal view of nursing homes. The reason no one wants to live in a traditional nursing home is because they are designed like hospitals, by accountants, to provide care with the most patients with the fewest number of staff required by law. Barry explained to me that he had no intention of building a traditional nursing home. He described the greenhouse model of nursing home, and I was intrigued. The greenhouse throws away the traditional model and reimagines the nursing home based on a residential home. Everyone has our own room with a private bathroom and shower. There is a common living room area with an opened and accessible kitchen, and a dining room with a single-family table for meals. There are no schedules for meals, and the kitchen is not closed with employees-only signs warning potential trespassers to stay away. It should be open. And Barry explained how the caregivers will be more like family and staff. Finally, and importantly, no one in the ALS residence would be turned away because of finances. Mass health would be accepted. I could not say no.
WADE WINGLER: Then I had some technical questions about the design, the configuration, and some of the more technical aspects of the ALS residence. Here is Steve’s response.
STEVE SALING: The decision to be a greenhouse had already been made. That assured the architectural design would be residential and that caregiving would be patient centered and done with compassion. I consulted with the architects, especially about accessibility which was ironically a professional specialty of mine. My last project that had just started before retiring as a landscape architect was a multi-firm project to bring several stations of the green line up to code. Working with the architects to design my future home was a really nice way to transition from my old career to my new one. But the most transformational part of the design would be the automation built into the ALS and MS residences. I was shocked that there was nothing commercially available. I knew the automation hardware was available but never could find software that would give a comprehensive control over everything I wanted to control. I knew how it could work, so Barry agreed to pay whatever it would cost to custom build a comp ranch of automation system that would be completely accessible even if you only move your eyes or make a muscle twitch. The automation system should be standard equipment and long term care facilities for the physically disabled. It gives me tremendous freedom and independence. We need a new 21st century Americans with disabilities act.
WADE WINGLER: With his background and architect, I also wanted to know what some of the unique architectural aspects of the residence.
STEVE SALING: As a landscape architect, I often used a layer of plastic mesh and my projects under areas of grass sod to make a structurally enforced lawn that might be used as an overflow parking lot or a fire lane. I knew that I wanted a fescue lawn at the ALS residence to put my bare feet into. Anticipating a well used lawn by some very heavy power wheelchairs, I specified that this invisible grass reinforcing product that I used in countless part projects would find use in my future yard. Most of my design contributions were outside the building like the café patio and the traffic circle in front with a yard including a babbling lawn as a shining jewel of the ALS residence. It is truly a stunningly beautiful place. I spent countless hours in the shade of some river birch trees next to a natural lurking waterfall and Koi pond with dozens of songbirds happily thinking in their new home. It is paradise, the built-in automation is what sets me free. I knew that a wheelchair would give me mobility and that ventilators would breathe for me, but I also knew that without conference of environmental controls I would be imprisoned like a caged animal. There was nothing commercially available that met my needs, and I grew frustrated trying to cobble together a variety of automation controllers. It would be a huge burden having a number of applications open to get around. The fatal flaw using this approach is that there was no viable way to power all of the controller hardware that would have to be attached to my computer, and I refuse to be plugged into the wall. One day, I had my Eureka moment. I contacted the few automation specialist that I could find online and found only one who got my concept. He programmed what is the only commercial grade multiuser environmental control system that has ever been available based on my very demanding specifications. It is called at the peak automation system, and it requires no software to be installed on the users computer and no hardware on the wheelchair. All it requires is Wi-Fi in a browser so it would even work on your smartphone. With it, everyone in the ALS residences has complete environmental control with the bleak of an eye. We have control over doors, lights, home theater, thermostat, window shade, call bell, and even elevator. Most everything that runs on electricity can be controlled with peak. Once I am helped into my wheelchair in the morning, I may not need assistance for the rest of the day until I go to bed, and even that I use peak to call for assistance from my bed. Peak has given me control that ALS had taken away. It should be standard equipment for the physically disabled and the 21st century and hopefully one day it will be.
WADE WINGLER: I like to get nerdy on this show, so I asked Steve to tell me a little bit about that that will details about how his assistive technology works.
STEVE SALING: The brains behind peak is a standalone server that can be accessed by Wi-Fi using its IP address. This server is on 24/7 and is backed up by a generator so that it has a constant power supply. This automation server has tentacles throughout the ALS residences that connect to every door, light, TV, thermostat, window shade, nurse call box, and elevator. The most common connection is by cat six ethernet cable. The lights and Internet outlets are connected by the electrical wiring itself. I think most everyone is familiar with X 10 which also connects to the wiring but is very unreliable. We chose to use universal power bus, or UPB, which is expensive but it has proven to be an excess of 99 percent reliable. Reliability is a premium at the ALS residences. The third way peak controls the environment is by infrared. The peak automation server recognizes individual users through a username and password and gives access based on a set of predefined permissions. Because the users access the automation server by its IP address, it is independent of the Internet, so when Comcast goes down peak is still reliable. I use peak every day and can’t imagine life without it.
WADE WINGLER: And it’s a full project doesn’t involve just one person or idea, so I asked Steve to tell me a little bit about the team, the people who are involved in making the ALS residence something that became a reality.
STEVE SALING: It all starts with the CEO of the Kelsey Jewish foundation, Barry Berman. He is a true visionary who was taught crazy by his industry colleagues for taking on a project so upside down financially. He has persisted through trying times and proven it can be done. Philanthropy is the essential, so none of this is possible without the very generous people. The staff who work in the ALS residences make all the difference in the world. I am not living where they work. They are working in my home. They have as much compassion and patience as my own family. Finally, it is the people with ALS who want a chance to play the hand they are dealt. I think everyone would say that moving to the ALS residence is like drawing a pair of aces.
WADE WINGLER: And then I just had to know: what kinds of things might be improved. Are there things that may be better about the ALS residence?
STEVE SALING: There is never enough storage space, both for personal items and for medical supplies and therapy equipment. We should have a workshop to manufacture useful devices. There can always be more time for massages and range of motion exercises. But all in all, we don’t lack for much.
WADE WINGLER: One of my favorite questions to ask my guests are about their crystal ball, what they see in the future or what they see on the horizon for their area of expertise. Here is Steve’s response to my crystal ball question.
STEVE SALING: Technology has created incredible improvements in quality of life, while medical advancements have produced none, certainly nothing remarkable. I hope there is a medical breakthrough like everyone, and apply those who focus their efforts on research. But I am backing a technological cure will come first. If productions are accurate, we are less than a decade away from autonomous cars that will drive themselves. It is a short jump from there to realizing autonomous wheelchairs. This will be a revolutionary breakthrough for all kinds of disabilities. Another breakthrough will be when the brain computer interface is fully functional. The computer has broken so many barriers already. If this were a written interview posted online, you would never know that I am completely paralyzed except for a little movement of my head and unable to speak a word. I can imagine no limits when I can control computers with nothing but my thoughts. Unless medicine proves otherwise, technology is the cure.
WADE WINGLER: I always like to ask my guests at the end of the show how people can reach out to them, contact them, learn more, keep in touch with the work they are doing. Here’s Steve’s response.
STEVE SALING: I have found that the ALS Residence Initiative, or ALSRI, to promote the ALS residence across the country and the world. Please visit my website at www.ALSRI.org, and you will find a lot of information about my progress. There is contact information in there that will connect us. Thank you very much for inviting me to your program. I hope your listeners find it interesting. I survive ALS because life is good.
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***
