Parents of disabled children say finding fun things for them to do is a full-time job. Could a new TripAdvisor-style site solve this?
“We went as a family to a water park which has a warning hooter which goes off to let you know the wave machine is about to start,” says Alexa Wilson. It wouldn’t cause problems for most families but her children, Ellie 13 and Toby ten, both have Fragile X syndrome – an inherited condition which comes with learning disabilities.
Ellie doesn’t like unexpected loud noises and, when the klaxon sounded she got up and ran out and refused to return. “This is just one more place we now can’t visit,” says Wilson. “Had we known about the klaxon, we could have warned her.”
Stan Palmer is 12 and has Down’s syndrome. His dad, Steve, says most activities don’t advertise that they’re inclusive, even if they are, which creates uncertainty. He says more effort needs to go into making it obvious so that parents can make the right choices.
“If we just turned up at a mainstream rugby class with Stan, it just wouldn’t work because he needs extra attention,” he says. “Or if he was typically developing he might say ‘I’m going to paint a picture now’, but we have to help and guide him into play.”
Palmer currently finds out about inclusive leisure activities for his son in a “very ad hoc” manner via other parents of SEND children, or on social media.
According to the consortium of nine charities behind the new website, Palmer is not alone. Useful information about inclusive family activities and many other important services is scarce.
In a recent survey by the consortium, three-quarters of families said they have difficulty finding information about what services are available to them.
“We developed SENDirect in response to families telling us that finding vital local services for any child with additional needs is over-complicated, confusing and choice is severely limited,” says Jolanta Lasota, chair of the consortium and Chief Executive of member charity Ambitious about Autism.
The new website allows visitors to search by postcode, price range and age suitability, for everything from health services, to specialist equipment, to childcare. Family activities come under the category “fun stuff”.
For Wilson it is important that her children get to as many leisure activities as possible.
“Life skills and social skills are more important for Ellie and Toby than straight-forward education,” she says, “because building up friendships and social skills is what is going to help them survive when we’re not around to look after them.”
Functional services have traditionally been prioritised for disabled people but Lasota says that being able to find and use leisure resources might reduce a need to use other expensive specialist services – such as mental illness facilities.
“We know that isolation leads to mental health difficulties and therefore those people would need more access to mental health services,” she says. “What we’re trying to do is break down that isolation, so that families are included in their communities and don’t feel so alone.”
Hundreds of parents were involved in the development of SENDirect. They helped decide what sort of information they would find useful when researching services. Users can rate each service based on their experience, which will then be visible for all to read. This is something Wilson welcomes so she can do her homework and avoid failure.
“It’s taken trial and error to find out which cinemas and theatres are right for Ellie.” She says lots of “fun things” have an accessibility statement but usually this just means access for wheelchair-users. “They don’t really think about people with learning disabilities,” she says.
Wilson says that if she heard about a cinema that has a more tolerant attitude to a little noise then she would go there. She observes that if parents are less anxious then in turn their children will be more relaxed too. “We have had bad experiences in theatres where staff were unhelpful to the point of rudeness,” she says.
Sixteen-year-old Shane Goncalves has cerebral palsy, is blind and has a severe learning disability. His mum, Sam Bergin-Goncalves, wants nothing more than for her son to reach his full potential, be independent and live a life with rich and varied experiences – as any parent would want.
She has an interesting thought on how sharing information like this can lead to even more positive collaborations. She says she’s hoping that SENDirect will give her family the ability to link up with others to pool money from their personal budgets – funding given to them by social services – and widen the opportunities available. “It would be good to approach providers with ideas for activities that my son and his friends would like to do,” she says.