PERSON OF THE MONTH
Simone Enefer-Doy
We speak to the chief executive of Lifelites, a charity that bridges the gap between disabled children and tech. It works with every children’s hospice in Britain to install equipment that has a profound impact on desperately ill kids.
Parents will frequently moan that they can’t get the kids off their tablets. Parents of critically ill children have the opposite problem: they often can’t find the right computer equipment for them.
Lifelites bridges the gap between disabled children and modern technology. It works with every children’s hospice in the British Isles to install computer equipment that has a profound impact on desperately ill kids. It might help children without speech to form a missing bond with their brother or sister, for example, or let them do something that other children would just take for granted, such as playing video games with friends.
All this is managed by a small charity with a dedicated volunteer network and enormous heart. We met with Lifelites’ chief executive in the aftermath of the BT Tech4Good Awards to find out more about this extraordinary organisation. Lifelites started life as a millennium project at the Worshipful Company of Information Technologists – essentially a charitable arm of the City of London. Back then, it was about putting computers on desks for sick children, but the project ballooned. By 2006, it became a standalone charity catering for the technological needs of critically ill children and their families.
“It’s all about enhancing their lives,” said chief executive Simone Enefer-Doy. “Some are cognitively disabled, some are unable to move, some are on the autism spectrum. Whatever their ability, we want to give them something to use.”
It’s hard to quantify the enormity of the impact the right technology can have on the children and their families. Many are bedridden, many can’t speak. Incarcerated in their own failing bodies, the technology provided by Lifelites can unlock years of pent-up frustration. “We want them to be able to play and be creative, and to control something for themselves in a life where so much is done for them,” said Enefer-Doy. “But also, very importantly, to be able to communicate. Many of them are non-verbal and we give them all sorts of technologies that let them join in with the life around them.”
Finding the right technology
Enefer-Doy explained that it soon became apparent after the project started that desktop computers weren’t the answer for children with physical disabilities. However, the march of mobile technology over the past decade has made an enormous difference to the charity’s work and what it can provide. “When we first started it was computers on desks, but obviously these youngsters have a lot of disabilities,” she said. “A lot of them use huge wheelchairs, some of them are so poorly they can’t get out of bed, but they still want to be entertained and join in with life.
“The advent of Wi-Fi and portable technologies has been amazing for what we do,” she added. “The computers have come off of desks and onto the wheelchair trays. They’re going into the children’s bedrooms, particularly the iPads. We provide a special iPad package that has a drop-proof cover and they can put them on their wheelchair tray.”
It’s not only the hardware that Lifelites provides, but also the specialist software and apps to go with it. Not to mention the accessories that allow children with even the most difficult conditions to use the equipment.
Eyegaze, for example, is an eye-tracker that allows paralysed children to draw on screen, use a virtual
keyboard or even join in gaming sessions with their siblings. “The first one we provided was on a desk,” said Enefer-Doy of the eye-tracking technology. “I immediately saw that wasn’t right. I said to our technical support chaps, we’ve got to find something better than this for these children. It’s no good if you’re lying in bed, you can’t use the Eyegaze. We put together our own package that comes with a fairly expensive stand… so the Eyegaze can be angled at any angle.
“When we did a pilot of Eyegaze in a hospice in Kent, the lad who was using it there had not had a relationship with his brother at all,” she explained. “But suddenly this was something his brother could do as well. They were playing games on the Eyegaze together. And Luke, the lad who had the disabilities, was beating his brother, because he was more used to using his eyes for activities. Suddenly, you’ve got a level playing field and brothers and sisters playing together in a way they wouldn’t have done [otherwise]. I can remember the parents getting very excited about that.”
Perhaps the greatest thing about the technology that Lifelites provides is that it lets kids be kids – warts and all. Enefer-Doy recounted the experience of a boy called Craig, who uses an iPad as a speech synthesiser. “He’s created groups of words to communicate in different ways,” she said. “He’s got a section on his iPad called ‘Craig’s corny jokes’. He has a love-hate relationship with his carer. He presses the screen and the iPad says out loud ‘you do me ’ead in’. These are ordinary young people, they’re just like any other youngsters. They have interests in fashion and football and pop songs and we have to give them the means to continue to join in with life.”
But none of this specialist equipment comes cheap. You might think that a charity such as this would benefit from hardware donated by tech firms, but it doesn’t. Lifelites receives very little in the way of donated equipment. Instead, explained Enefer-Doy, “there’s a lot of companies out there addressing disabilities with technology and we’re absolutely the market for these companies. We don’t get an awful lot donated, we have to buy it.”
A package of equipment designed to last four years costs around £50,000. That means the charity is replacing the equipment in a quarter of its 60 sites every year. That cost doesn’t just cover the equipment, software and accessories, but the staff to install and maintain it. “We don’t just give the technology and walk away,” said Enefer-Doy. “We train the [hospice] staff on how to get the best out of the technologies we provide.”
The charity runs a technical support helpline to help deal with any difficulties the hospice staff encounter. “If there’s any problems at all with the technology, they ring the helpline, and if it can’t be solved over the phone, our tech support people travel to the hospice and sort it out for them. So, whilst we look after all this complex technology, the hospice staff can concentrate on caring for the children and their families.”
All of this is done with a staff of only nine – and a priceless team of volunteers, who help with anything from fundraising to technical support to consulting on the technology. “We do a huge job with very few people,” said Enefer-Doy. “There are 10,000 children and their families benefitting from what we do. We’re really punching above our weight.”
Escaping into virtual reality
Part of Enefer-Doy’s job is keeping one eye on the future, looking out for the technologies that could provide a further boost to the thousands of children the organisation caters for. “We’re constantly on the lookout for the next development in software and hardware,” she said. “We’ve just pinpointed some new software for the Eyegaze which we think is going to be even easier to use and more accessible for communicating. This isn’t just off the shelf technology, it’s us working very hard to provide something for a very specific and unique audience.”
One branch of technology that she’s convinced has a future in the Lifelites portfolio is virtual reality headsets, after the charity conducted a pilot test at a hospice in Winchester. “We’re very excited about the possibilities of virtual reality to enhance young people’s lives, to give them a chance to escape from the confines of their illness, to give them the chance to do things that they wouldn’t otherwise be able to do,” she said.
“It’s just fantastic to see them experiencing climbing Everest, or [watching] the Northern Lights, or swimming in the sea with turtles, or running in the sand with their dog – all from the confines of their wheelchair, in a body that doesn’t do what it’s told.”
There are 10,000 children and their families benefitting from what we do. We’re really punching above our weight