When Naomi Marek’s son Max was diagnosed with autism and a life-threatening form of epilepsy at the age of six, she suddenly found herself having to navigate a maze of hospital appointments, school rejections, financial worries and many unknowns about what support was available where.
After joining a local club for parents of disabled children, Marek realised that finding the right help and information can change everything. Word of mouth between a few mums soon turned into a Facebook page for local information sharing, and the seed of an idea for Sky Badger
was planted. The name itself? A superhero badger invented by Max.
Since its launch as a website in 2011, Sky Badger has helped over a million disabled children and their families, as well as teachers and social workers, find financial, social and legal help. Its information pages include everything from help at school, medical information and disabled adaptations, to fun things like sensory toys, holidays and sports clubs, siblings groups and ‘make a wish’ charities.
“There is so much information online, but you don’t know how up to date, accurate or real it is,” says Marek. “Big charities don’t tend to refer to each other’s services - if you’ve got two big disabled organisations near each other one of them will not tell you about the other one because it’s not in their interests. And I get that, but I need to know! So we came in as a kind of virtual mum at the school gate, that person with all that information you can help people out with.”
The sky's the limit
As well as signposting families to information, advice, local and UK-wide services and products in an easy to find, friendly way, Sky Badger runs an e-helpdesk answering parents’ queries 24 hours a day. It is also a thriving community on social media, and produces downloadable resources such as how-to guides and disability awareness lesson plans for schools.
Sky Badger has grown from a Facebook page to a national charity and the winner of several awards including AbilityNet’s Tech 4 Good Awards 2017
and the Guardian’s Charity Awards 2014
, and has patrons including Professor Stephen Hawking and Sir Ranulph Fiennes.
Marek had no technical training or background before starting Sky Badger - "I knew nothing about IT! I was a painter, a fine artist. But I was angry and needed this problem to be fixed- I think it was rage that probably pushed me!"
In order to launch Sky Badger as a charity, she took up business study at the School for Social Entrepreneurs - a business school run by the founder of the Open University. She was able to learn many of the aspects of running a digital-led charity over just 14 days' study time a year, taking sessions over Skype when her son was ill and she could not physically get into the centre.
A virtual world
“Once you have a child with a disability you can’t go to work,” says Marek. “You have to be there the entire time. There are thousands of kids and they’ve got parents stuck at home who are skilled and brilliant. We thought, what can we do to ensure that as Sky Badger grows we employ people who are parents of disabled kids or disabled themselves.”
Sky Badger is currently run by just four staff and a fluctuating team of around 10-80 volunteers. Because so much of the work behind Sky Badger involves researching, updating and entering information, or communicating with families online or over the phone, it became apparent that there wasn’t a need for a physical office.
“Sky Badger is an entirely virtual world,” says Marek. “So everyone who works for us does so entirely online, and that gives us absolute freedom. it also means that parents can be totally flexible with their time. if you have a day’s appointment with your child in the hospital you can do a bit of work in the parent’s room or in the evening when you get home.”
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Image: Alison Anton, Unsplash[/caption]
Training for staff, volunteers and trustees is run entirely online through videos and webinars, and the charity uses collaboration tools like Skype to conduct its meetings.
“Salesforce CRM system gives out ten licenses free for eligible charities, and it is spectacular for working remotely,” says Marek. “It also has security built-in, so only certain staff members get to see certain beneficiary groups.”
Thousands of services, products and charities are listed and updated on the Sky Badger website -this means a colossal amount of data to compile. The charity gets around this by recruiting for ‘pyjama volunteers’ – virtual volunteers who spend however much time they can give researching online and writing Facebook and Twitter posts. The programme is catered specifically for young people who are time-poor but IT savvy, and the charity now runs the scheme as part of the Duke of Edinburgh awards.
Behind the clicks
With Sky Badger’s services run entirely over the web, understanding the analytics behind who is using the site and how is incredibly important. Sky Badger’s web design agency, Boldlight, were able to undertake detailed user journey mapping and testing process to give the charity a picture of the different groups of people that use Sky Badger, what they are looking for and how to make it easy for them to access.
“We’ve discovered that a lot of dads of disabled kids use our site,” says Marek. “They use the information on our site in a specific way. They often want to email instead of a phone call, as they want that anonymous connection with straightforward facts."
"As a dad of a disabled kid, they often play more of a backseat role. While the mum is taking them to hospital appointments and being involved in the day-to-day stuff, they are the ones worrying awake at night, when they go to the site between 11PM and 4AM and start working their way through all the information.”
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Image: Danielle Macinne, Unsplash[/caption]
As parents of disabled children themselves, it helps that the charity’s staff have an empathy with Sky Badger’s users from a personal level, and this has helped make sure the website is striking the right emotional tone.
“A lot of disability charities’ websites can look very medicalised and sad – kids with tubes through their noses, and that sort of imagery,” says Marek. “If you’re using your homepage to raise money, I can understand how that can help, but as parents as disabled kids that’s the last thing you want to see.”
“Our brand is all about really positive and upbeat and giving out the message that there is help, you’re not alone, and life with your child can be fun and silly! You spend so much time being told about your child’s limitations - this is about opening that out again.”
After recieving a lot of interest from parents in other countries, Marek's ambition is to grow Sky Badger as international website franchise, with hubs in France and Italy.
"So many parents desperate for it, and the cost of doing it is tiny," she says. "We are running a national service for what would be a super local service price, all because we’re online."