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Leisure activities can be a great way for children to make friends and learn new social, creative and physical skills. 

Some children may enjoy sports while others might prefer drama, music, or dancing.

But for children with disabilities, of which there are 3,220 up to the age of 19 in Caerphilly County Borough, according to ONS Census 2021, it can be difficult to find a club or group that caters to their needs. 

This is something Janet Kelly, chair of Sparkle, a charity which supports children and young people with disabilities across Gwent, knows all too well. 

“What do they do at the weekends? What do they do in the evening? Do they have any friends?” asked Janet. 

“The health board provides all your traditional services,” she continued, referring to things such as occupational therapy or speech therapy, “it doesn’t provide what happens to the child for the rest of their life.”

That’s where charities like Sparkle come in – by providing leisure services for children with disabilities and additional learning needs. 

Many of the services are run out of Caerphilly Children’s Centre in Energlyn, where families can choose from services such as a Saturday play club.

Samantha Edwards, activities development officer for Sparkle, told Caerphilly Observer more about how inclusive the sessions are.

“We don’t have an ASD (Autism Spectrum Disorder) group, an ADHD group, it is all mixed,” she said, “it purely comes down to which club the parent wants.”

Samantha’s son has autism and she first came across Sparkle when she used the services herself. 

“I’m an ASD mum myself,” said Samantha, “my son could never entertain a mainstream club.”

She continued: “Before I started working for Sparkle, I wasn’t aware of the charity so we didn’t have anywhere to send him. We weren’t getting any respite, nothing.”

Samantha’s son is semi-verbal and needs personal care, including help using the toilet.

Sparkle groups and clubs come with equipment such as hoists, sensory toys and two-to-one or one-to-one support to make sure it is a comfortable and safe environment.

Attending just one group makes a big difference for Samantha’s son. She said: “He absolutely loves play club on a Wednesday morning.”

“Never included”

There are many more success stories, including eight-year-old Deacon Cleverly – who attends Sparkle’s Saturday play club at Caerphilly Children’s Centre. 

He lives in Trinant and has previously struggled to make friends.

The children he knows, including those from school like to spend their free time outside – but this isn’t possible for Deacon.

That’s because he has Multiple Epiphyseal Dysplasia, a disorder of bone and cartilage development which causes pain and means it is difficult for him to get about. 

Danielle Cleverly, Deacon’s mother, told Caerphilly Observer her son’s “physical disability lets him down” when it comes to playing with his peers.

She added: “They’re able-bodied and they want to be out on their bikes and go into the park.”

While “a few of his friends might call for him”, Deacon often finds himself left out, spending time with adults. 

But that’s not the case at Sparkle.

Danielle continued: “He has made a really good friend in club,” adding that he was recently invited to a birthday party at a trampoline park. 

She added: “The fact that he could go and he had a friend that invited him… children at school know that Deacon is disabled so he is never included.”

At Saturday play club there are also workers on hand to help Deacon and give him the attention and care he needs. 

“He loves those ladies,” said Danielle, referring to the staff at Sparkle, “they do everything for him and that’s what he needs.”

This could be as simple as helping him put his shoes back on when he’s too tired to do it himself.  Danielle added: “Little things like that – he appreciates it so much.”

These services can make a massive difference to parents, carers, and guardians too.

Danielle, for example, often uses it to catch up with her husband in the car with a bacon sandwich.

Janet said: “It’s good for their child because that’s what other mums do – they leave their child for an hour-and-a-half and they go. Then they come and they pick them up.”

A “struggle” to provide ongoing services

There are other organisations which provide services for children with disabilities and additional learning needs across Caerphilly County Borough. 

The local authority puts on activities such as disability swim, while community groups Valley Daffodils and Sparrows hold events like soft play, swimming and archery to give neurodiverse or disabled children the same opportunities and experiences of their peers. 

Caerphilly’s Senedd Member, Hefin David, attends Sparrows with his daughter who has autism and said: “We really look forward to those sessions and I know many others do too. They are invaluable in opening up support from others who face similar challenges and are absolutely priceless in the difference they bring to families like mine.”

This is not the first time Dr David has spoken about the importance of groups like this. He previously called on the Welsh Government to do more to support provision for people with additional learning needs.

In fact, Caerphilly is a local authority which is particularly in need of services. There are 660 children with Autistic Spectrum Disorders in Caerphilly – the third largest number in all local authorities except for Swansea and Cardiff, according to StatsWales.

Dr David continued: “Groups like Sparrows, Sparkle, and Valley Daffodils are a real lifeline. They are a place for children to come together and socialise in safe surroundings and a place for parents to have a breather and let their children be themselves, without fear or judgement. 

“I also understand the struggles these groups are facing in continuing their services, through previous work I have done with Sparkle.”

These struggles can often be financial, according to Sparkle’s Janet.

“Per child, per annum, one group costs us £2,000,” she said, “so we have to raise a lot of money.”

Sparkle funds its services using grants, which can be difficult with other charities competing for the same funds, especially when the groups and clubs run all year round.

“It’s a long-term commitment to support these children and families,” said Janet, “our groups, they’re not time-limited. So if your child comes to a Saturday morning or Friday evening club, that’s their thing, that’s what they do.

“The child has to develop confidence. They have to develop trust,” continued Janet, “And if they’re going to learn some skills, it could be very slowly or over a longer period of time.”

“A huge waiting list”

With 20 children on the waiting list as of June 2023, Sparkle and other organisations help to fill a gap – but there is still more to be done. 

“We’ve got a huge waiting list. Somebody needs to meet that waiting list. Who’s going to do it?” Janet asked, “ And who’s going to do it with the understanding that they need a level of support?”

For Janet, however, it’s not about casting blame but making sure there is a provision in place for children and their families. 

She said: “This is not a ‘them or us’ with the local authorities. We want to say we have expertise in a very particular area for a very specific group of children.”

Janet continued as if speaking to the local authority and said: “If you can’t meet that need then we’ll collaborate with you. You can give us some funding and we’ll run that on your behalf.”

Janet’s hope to work with the council has become a partial reality – after Caerphilly County Borough Council gave money to Sparkle to provide activities during school holidays. 

This has previously been called for by parents such as Jeni Spinks from Blackwood, whose son Clarkson is autistic and has complex needs. Ms Spinks runs the campaign ‘Exposing disability inequality for Children and Families’.

A Caerphilly County Borough Council spokesperson said: “We have been working closely with our partner organisations to understand the needs of families of children with disabilities. This includes identifying the provision that is currently in place and the information to let families know what support is available.

“This work has identified a gap in play provision for children with more complex needs during school holidays and, in August, the council was able to award a contract to Sparkle to deliver provision to meet some of this need.

“While the timing of the contract being awarded was too late to meet the needs within the school summer holidays, plans are now being put in place for the October and February half-term breaks. Families will be encouraged to register with Sparkle to access their provision.”

Caerphilly County Borough Council added that it is in the “early stages of increasing the provision available to families” and that it would in the meantime look to make information on what is currently available more accessible. 

“Inequity” across the borough

There is also a hope that in time services will be more evenly distributed throughout the borough.

Families in the north of the borough, in places like Pontlottyn or Rhymney, may struggle to reach what is on offer in Caerphilly town due to issues such as transport or distance. 

This disparity was highlighted in research conducted by Sparkle, in which one participant described Rhymney as “isolated”.

It is why Teddy’s ALN Support Group was set up in Rhymney in April 2023. 

Speaking to Caerphilly Observer at Teddy’s earlier this year, Sadie Morgan from Caerphilly County Borough Council’s Early Years Support Team said: “In Caerphilly, they have parent groups set up already like Sparrows.

“There’s nothing really up here so it is very isolated.”

This has not gone unnoticed by Sparkle, as Janet said: “As a group of trustees, we became concerned about the inequity.”

Noel Williams, Sparkle’s Treasurer, suggests that historic boundaries are to blame for some of the inequity between the north and south of the borough. 

He said: “You’ve got a split between Caerphilly north and Newport in the south…It needs to be sorted out.”

For Janet, there is a model that can be followed for future children’s centres – Newport-based Serennu.

Janet continued: “I used to say if I was a parent for a child with disabilities and I lived anywhere else in Gwent, I would have just moved to be near to be the catchment area for Serennu.

“Not just for the fantastic facilities, but for all the leisure facilities.”

Serennu has an accessible cinema, swimming pool and climbing wall as well as access to professionals all under one roof.

While it is open to Caerphilly County borough residents, it is only available to those in a certain catchment area – and it shows both what could be available but also what is still lacking.  

“What it’s done is it’s highlighted issues of inequality in the north and in the west,” continued Janet, “where the facilities aren’t that great.”

Hope, however, is on the horizon.

Sparkle is working with partners to bring a new children’s centre to the north of Gwent that will then reach families in the north of the borough and towns such as Rhymney. 

“A new centre in the north would provide a facility that some of the Caerphilly families from the north could access,” said Janet.

The new centre would be “a collaboration” according to Noel, meaning other charities and organisations would be welcome – unlike Serennu where only Sparkle can use the facilities.

The plans also include a transition hub to help children move confidently into adulthood. 

Ultimately, having services and groups for children with disabilities and additional learning needs improves the overall wellbeing of a group of children and indirectly, their families.

And this is something that Janet is eager to ensure.

“There’s an identified need,” she said, “we don’t care who makes the provision…we just want it to be there.”

Update: On November 29 the Regional Partnership Board told Caerphilly Observer that plans for the children’s centre were “under review” due to “the current financial situation”.

They added: “We have written to colleagues at Sparkle and we hope they will take us up on our offer to discuss next steps very soon.”

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