Assistive Technology: Beyond the device
This is my first blog post, so it seems only fair that I should tell you a little bit about myself.
I’ve been working for Access Technology North for almost one year (sure hope I get a cake or something to commemorate the actual anniversary… Mike? Andrew? Don’t pretend you’re not reading this…)
Before coordinating our interventions here and keeping the techy-boys in check, I was a qualified primary teacher with ten years experience working with children and young adults with a broad range of learning difficulties and disabilities. Despite my passion for this field of work, my other obsession, and probably my favourite job title, is the one that four year old Eva and six year old Fin have given to me…‘Mum.’
I’ve been aware of Assistive Technology (AT) since I was eleven years old when my Grandma was diagnosed with Motor-Neurone Disease. Horrifically, Motor Neurone Disease attacked Gran’s speech and swallowing first. In the beginning, her words started to slur. People would make comments about whether she was drunk. Others, as the disease progressed, would assume she was deaf and would sign at her in the street. With no voice, Gran couldn’t explain the situation without the use of her trusty note-pad, but that took time and relied on Gran having a good pen grip to write her responses. ( I think in the end my dad printed some cards for her to whip out, “I’m not deaf, nor stupid, I have Motor Neurone Disease so p**s off!”… Gran always was quick and to the point.)
As the disease took hold, Gran lost her voice, she was peg fed, she couldn’t walk very far, and the trusty pen grip was deteriorating, but then, the lovely people at the MND Association gave Gran a ‘Lightwriter.’
Lightwriters are text-to-speech devices. Gran could type a message on the keyboard, and the message would be displayed on two displays, one facing her and a second outward-facing display for whoever she was chatting to. A speech synthesiser also provided a speech output, so now Gran didn’t need to rely on people’s literacy skills when she wanted to tell them to “p**s off”, she had an american robot voice to do that for her- in seconds.
At eleven and eight, my younger brother and I didn’t have a very full understanding of what was happening to our Gran. Her body was deteriorating in front of us and without her voice, her wicked sense of humour and beautiful personality had faded away to almost nothing. She was barely recognisable to me as my Gran. Then, one afternoon, shortly after the arrival of the Lightwriter, from the corner of the room, as my little brother and I sat minding our own business, watching t.v, came the sound of an american robot: “THO-MAS… YOU..ARE…A… FAT…HEAD.”
Just like that…the laughter was back, the smiles were back, and she was back.
For the short time that our planet continued to be graced with Gran’s presence, the Lightwriter had a massive impact. It made a huge difference to my Gran’s ability to be independent, to entertain and interact with her grandchildren and perhaps more importantly, to exclaim a profanity or two.
Gran’s Lightwriter didn’t just help us to communicate with her and her with us, it helped us to make memories. Two decades after Gran got her Lightwriter, I taught an eighteen year old student who also used one to communicate. She was much faster than Gran at using it, but she’d had it for years. She kindly let me have a ‘play’ with it, and I have to say, apart from some snazzier voices, the device looked exactly the same. I told my student all about my Gran, we also had a good laugh, especially when I called my student a fat-head using her own communication aid. Had to be done.
Throughout my voluntary work, training and work as a teacher, AT has always been talked about. Devices, switches and software have always been knocking about, several gathering dust in cupboards, or being hoarded by that one particular staff member (we all know at least one… if you don’t.. it’s definitely you.) I’ve worked with many individuals using different devices and software and all with very varying degrees of success, but it’s only been in the last two years that AT has become of interest to me.
I’m passionate about quality in every element of my life; food and shoes in particular of course, but also education. Historically, I’d seen too many examples of poor practise for AT to excite or interest me. Until, that is, I met James (*not his real name) at a specialist FE college where I was working as the programme lead for Employability.
James was 20, he was bright, passionate, funny, with a keen eye for detail. He also happened to have Down syndrome. James’ verbal communication was poor, his speech was almost incomprehensible and his writing skills were not much better. James was interested in working in hospitality, he was sociable and enjoyed a good laugh, he wanted to take people’s orders but, without the use of some sort of communication aid, he wouldn’t be understood by customers or in fact any of his colleagues. Unless we found an employer who was ‘understanding’ or who had some experience working with an individual with a learning difficulty or disability, then realistically James stood little chance of getting a ‘proper’ job. James wanted a job, and he was absolutely capable of so many different jobs, but with no speech he was unlikely to get through any interview. Frustratingly, the only thing holding James back was his speech.
James came to the college with the software Proloquo2Go on a broken iPod. Proloquo2Go is an Augmentative & Alternative Communication (AAC) application that can provide a voice for those with expressive language difficulties. From basic wants and needs to more complex sentences, Proloquo2Go is a customisable, symbol supported communication tool for children and adults with autism, cerebral palsy, Down syndrome, apraxia, aphasia, or traumatic brain injury.
The college replaced the iPod, gave James intervention sessions and as his Programme Lead, I was pleased with the progress he was making in terms of his ability to navigate, customise and use the app. The device was portable, he could take it to his work placement, it seemed the perfect solution.
But there was a snag…
In college, in the classroom, with selective staff members who he trusted, James would use the app beautifully, but he refused to use it outside the classroom or at work. Over a period of a year, the college persevered but the Speech and Langage Therapy department made a call to stop supporting him with AAC because at 21, James had made the decision that he didn’t want to use a device.
I’d be lying if I said I wasn’t disappointed and completely gutted for James, and to be honest that’s the exact moment my interest in AT sparked. On paper, the device and software were perfect for him, but we still failed… why?
And then the questions started…
Had James started using the device too late? At 20, it was alien to him, in the beginning it slowed him down. He seemed self conscious, embarrassed when he used it and he didn’t have a peer group of AAC users he could identify with.
I couldn’t help thinking what James would have been like if he’d started exploring AAC at 10 years old? Or even 5 years old? Would things have been different if we’d found him some cool AAC users to hang out with?
It seemed such a shame to me that James didn’t seem to value or recognise just how much potential the technology had in supporting him to lead an independent life. How do you teach someone, or show someone the value and benefit of technology? Is it possible to help someone develop an aptitude for technology to enhance their quality of life?
So often, people think of Assistive Technology and they think of snazzy devices or pieces of software, (usually Stephen Hawking gets a mention too…) When an Assistive Technologist is called in, people expect a nerdy guy, to rock up and provide some ‘techy solutions’, and do you know what? At Access Technology North, we have two very fine nerdy guys who do just that, but they also do a whole lot more.
So often, Mike, Andrew and I have seen a ‘dump and run’ approach to Assistive Technology input. Thousands of pounds are spent on expensive devices and software, but they are not implemented appropriately with the individual or their network of support staff, teachers, parents and carers. When people aren’t trained properly, they are nervous about breaking the kit or doing something wrong, devices don’t get used, they get dumped somewhere, occasionally ending up scratched or even finding their way to that big assistive technology cloud in the sky… or that hoarders cupboard. Frankly that’s not cool. What a big fat waste?!
My technical aptitude isn’t the best, I can work my way around most devices and software, but when it comes to troubleshooting, my go-to method of “if in doubt, press everything” has been known to cause some, occasionally serious, problems, usually for the techy-boys. No, Mike definitely didn’t ask me to climb aboard the Access Technology North ship of dreams because of my technical acumen… he wanted me to use my experience, stop asking him questions and develop all the other ‘stuff.’
So, I climbed aboard, got all bossy, and we’ve spent the last year making changes to the way our service operates. We wanted to move away from providing just a reactive service that responds to a problem or a request and we’re now rocking a more proactive vibe. Not only do we spec AT equipment, software and devices for individuals with learning difficulties and disabilities, Access Technology North, now recommends and delivers a series of intervention sessions whenever a new piece of equipment or software is provided. Delivery of equipment is staggered so that clients aren’t overwhelmed. We also suggest and deliver regular training for support staff, parents and teachers to ensure our clients are supported appropriately to use their tech. We’re keen to work with schools, look at future planned learning opportunities and topics and see how we can ensure our client’s tech can support them to access their education just as well as their peers. Together, we’ve also been working on developing an Assistive Technology Pathway, a document that outlines the over-arching learning outcomes that our clients work through on their journey to independent technology use.
Devices change, software is updated, the realms and remit of technology in our society’s day-to-day life is constantly evolving. We have no way of anticipating what could be available for our clients in even just ten years time. At Access Technology North, we think it’s important that children understand the power of and embrace the benefits that technology can bring to our lives. We want our clients to develop an aptitude for tech. A child who is excited and driven to use technology stands a good chance of growing up to be an adult who gets the very best results from whatever technology solutions are available. Perhaps, more importantly they stand a greater chance of minimising the impact that their disability has on their quality of life.