SpecialEffect

After congratulating Dr Mick Donegan, Founder and CEO of SpecialEffect, on their recent BAFTA win, we heard all about the charity's purpose and beginnings.

"SpecialEffect is about enhancing the quality of life for people with severe physical challenges. We fill in gaps and look for opportunities to use technology.

"I used to work in communication and access to education.education. I worked for a national organisation that used technology to give schoolchildren with physical challenges access to the curriculum but realised that they needed access to technology for access to leisure and play, too. As a teacher, I know how fundamental being able to play is to someone's quality of life, self esteem and interaction. It is a reason to communicate and competition is a great way to learn. I saw that any kid I worked with, who had physical challenges, was being denied play.

"So that's why I started SpecialEffect; because there was nowhere else to send anyone. Video gaming is a big part of what we offer and I wanted to give instant help to people with the most severe and urgent challenges. For example, people in intensive care or rapidly progressing conditions."

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Mick and his team of specialists founded what is today an incredible charity. By adapting different consoles, using technology like eye gaze, they make play truly accessible. SpecialEffect supports a range of people with different needs from local to global scale.

On how they got started with AV1, it is hard to find a more impactful story than this.

Mick: "About six years ago, I had an email from a young lad called Sam. He was seven or eight at the time. His email – which I still have – said "I've had cancer for two years now. I wanted to say that if I weren't able to play video games then I would have gone mad. I just wanted to thank you and congratulate you on what you do."

"That was it, he wasn't asking for help or anything."

"At this point, I'd heard of AV1 Robots after speaking at Everton Football Club, where they'd used one as a mascot so I saw what they could do. I wanted to speak to Sam about offering him one so I set up a call with him and his mum.

"It took a while to persuade the education professionals involved, which is often the case. They were taking it to governors and getting refused. There was a lot of back and forth. Eventually, we got another school on board and three kids who were Sam's age were able to play and interact with him at lunchtimes through the AV1. That meant a lot to him. It was brilliant and made a real difference to his quality of life.”

In those early days Mick and Sam continued to face adversity. Mick recounted advocating for AV1 to a local MP and minister:

"I asked if he would formally endorse the benefits of it and was able to get my point across to a room full of people. Other government departments were present but nothing came of it. Sadly, Sam passed away within six months of eventually getting his AV1 into his school.”

By this point, SpecialEffect were convinced of the benefits of AV1 and set up their 'BubbleBusters' project in Sam's name. Harry Nelson, the charity's Technical Specialist in Assistive Technology, added:

"BubbleBusters is the name of our service where we provide AV1s to families. Sam was our very first BubbleBuster…he made a comic called 'BubbleBoy' and that's where the name comes from."

Sally: SpecialEffect were one of the earliest adopters in the UK and the story about Sam kickstarted the Invisible Children report. Harry, you were very hands on in the beginning with getting those robots up and running. Now, you have had as many as 50 robots out at once. How did you go from Sam to the high number of referrals you have today?

Harry told us how AV1 referrals started to snowball:

"It was very organic to begin with. No Isolation had done a study in the UK, but outside of that only a handful of schools had used the robots. Family support groups on Facebook helped word spread and the mother of a girl called Seren got in touch, after hearing about Sam’s story. So we thought, the first one went ok, let’s see if we can manage a second one.

"I drove out to Wales, went to Seren’s house and played hide and seek to try out the AV1. She scared the life out of her teachers because she decided to scream through the robot. There are loads of amazing photos and videos. Seren’s support worker recommended a couple of other kids and I then had a summer where every other week I was in and out of Wales. It grew very naturally from there."

"You might also remember Fynle, who visited London Zoo with his robot. Fynle had a brain tumour and had to go to Germany for specialist treatment, so was even able to go to school via his AV1 Robot from another country. Those stories led to even more referrals.”

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Discovering and breaking barriers to use

Mick: "I’m sure No Isolation would agree, but the tech support in those early days was not what it is today. Harry had to do a lot of breaking through firewall systems in schools, and persuading staff that this was a good idea."

Harry: "Some schools needed a lot of convincing as basically no one had heard of AV1. There wasn’t really any paperwork to explain it to them. I know you now have lots of resources to help build that trust and confidence which didn’t exist back then. Today, a lot more schools are open to it."

Mick: It’s only very occasionally that we’ll get involved now. There was one instance with a local authority and a school refusing to use AV1. Your heart bleeds for these children who can’t even be let through the door.”

Funding their AV1s, and hopes for government buy-in

Mick: "We have a team of fundraisers. On principle, we raise our own funds and don’t receive any external funding. We’ve got a range of fundraising activities that go on throughout  the year. Some local and some global. Things like gamers fundraising for us, and ‘One Special Day’, are examples of the gaming industry supporting us. We work very hard on this to fund all our projects."

"We’re all about access to play but with AV1, you can chuck in the added bonus of getting their education as well. It’s about helping them with their learning whilst also helping their socialisation and mental health because they’re actually with friends again. We hope that by seeing the impact of BubbleBusters local government will realise that this is something useful. AV1 costs a fraction of a support teacher so It’s a no brainer on every single level. We do it to provide immediate help, but partly as an example of advert to local authorities to do the same”

Some of the most unusual AV1 adventures, as well as day-to-day social activities

Jo Harmes, Charity Administrator, now handles referrals. "I was just telling a BubbleBuster mum this morning about the social aspect of the AV1s. I tell them it's yours to use as you please so feel free to take it out of school for summer holidays! If your child can’t attend a social event or anything like that, you can use it."

Mick: "Children take them out in the playground, to the cinema…"

Harry: "...we’ve had the zoo, we’ve had Ben Nevis, a tractor, abseiling off the side of Liverpool Football Club stadium, meeting famous footballers. Then, in between all that, there are plenty of stories of AV1 going round to grandparents, friends houses, all that sort of thing. Quite a popular one is the nativity play around Christmas time."

Dedication to the families they support

Jo: "Sometimes I’ll call a parent in hospital and they’ll say it’s really nice to speak to someone that isn’t a doctor and we’ll end up having a long phone call. I think that approach is something they really appreciate."

Harry: "That one-to-one support is really important. As we’ve grown we’ve made sure that we have all the systems in place to maintain that. Jo and Sally from No Isolation pick up these conversations and get robots in place really quickly."

Measuring impact

Mick: "The measure is ‘are the AV1s being used or not?’ If they don’t have time to give feedback or record a video, we just see that they are using the robot and know that it’s providing impact."

Jo: "I tend to check in after about a month to eight weeks. Often you’ll just get a one-liner like ‘it’s great’ and you get a feel for how it’s going. If we get a photo or case study then we’ll put it on our website and social media."

Harry: "It’s not quantifiable, but one measure of success can be when children are cancer free but still want to hold onto their robot afterwards. It shows that the robot is clearly giving them a significant amount of support. We’ve had some BubbleBusters relapse and the first thing they do is email and ask if they can have a robot again"

Jo: "They always name their robots as well, again showing their connection to it”

Sharing success

The charity shares success stories on their website, social media, and sometimes in the press. While promoting their amazing works, it is also fundamental in gaining awareness and referrals.

When asked if they had anything else to highlight, they chose the following:

Mick: "What’s great for me, is the design of AV1. It has always been so well designed for its purpose. It's only what is needed, and this simplicity is exactly what I noticed when I first saw it; It’s not what you can add to it but it’s what you can take away. All the personality of that device is the voice of that person, and the rest is in the mind, which is the best way of interacting”

Harry: "As someone who has worked with these for many years, I want to say a massive thank you for all the hours spent helping us get those first few AV1s up and running and persuading schools. It’s been fantastic to be part of that journey since the beginning, and now seeing so many go through the system so smoothly. It couldn’t have happened without No Isolation and the fact that you genuinely care."

Mick: "It’s been a very effective team effort between a charity and a company. Long may that relationship continue for helping children with severe challenges."

Jo: "I spoke to a parent this week that said ‘the AV1 has provided something that medicine can’t.’ and it was ‘beyond expectations"

You can learn more about Special Effect's BubbleBuster project on their website.