Hundreds of parents whose children have special educational needs and disabilities (SEND) have called for holiday clubs and after-school activities for their children.
A petition signed by 1,387 people said that something needs to be in place for the holidays so that children and young people up to the age of 25 can have “meaningful activities” when they are not in school or college.
Helen Irving presented the petition – entitled “SEND Us A Break” – to Brighton and Hove City Council’s cabinet, highlighting how parents need to work and have a break from their caring role.
At the cabinet meeting last Thursday (14 November), Ms Irving said that parents struggled to find carers or childcare placements.
Many were asked to return their direct payments provided for services that they wished they could have but did not receive.
The petition on the 38 Degrees website said that the council had “failed to produce a plan of action to provide short breaks and holiday activities for all children with SEND” since the disabled children’s charity Extratime closed in 2023.
Parents said that what had been offered was not suitable for those with complex needs who required one-to-one support – and families in crisis were struggling to cope.
Ms Irving told councillors that parents were at breaking point because during the holidays, particularly over the summer, their option was three to four days of suitable childcare in total.
She said: “The only way I was able to get through the summer holidays this year was by taking three weeks of leave. One of the weeks was unpaid which had a real impact financially.
“I had to rely heavily on friends and flexibility from my employer.
“I am lucky I can afford to pay for childcare – but childcare suitable for my son’s needs does not exist in sufficient qualities to allow me to work even part-time.
“For most families with children and young people with complex needs, one-to-one or two-to-one support was offered for a total of three or four days’ childcare for the whole six weeks of the holidays.
“Families may be in receipt of direct payments for respite from their caring role but there are significant challenges for families recruiting staff to do this work.
“And often a surplus of direct payments builds in a child’s account and the local authority requests the money back without any service being provided.”
She said that in the October half-term holiday there was just one day of activities for children with complex needs, running from 10.30am to 4pm.
There were not enough places for those who needed them.
Councillor Mitchie Alexander said that the petition raised awareness of the struggles faced by parents and carers in ensuring children with special needs and disabilities received the support they need.
Outlining the services offered in the summer, she said that there were 678 sessions, of which 418 were specialist sessions for children and young people with complex needs.
She said: “This compares to during 2023 when there were just 300 specialist and targeted sessions delivered by Extratime.
“Parents’ wishes and young persons’ needs have been accommodated as much as possible, often in creative and bespoke ways through one-to-one support and mainstream providers.”
Councillor Alexander agreed that there was a need for longer sessions in the holidays and more sessions for children with complex needs.
The council was working with the special schools to deliver after-school clubs and wrap-around care, she said, adding that the council would work with the Parent Carers’ Council (PaCC) to develop the offer.
The council’s response to the petition was disheartening. It looked like they were more interested in defending their position than holding their hands up to the impossible position they’re putting parents in. I’d like to see some real action here, addressing the provision of childcare and understanding why payments are not being used when care is so desperately needed. As a community, we want these children cherished and looked after, and these parents rested and able to contribute. Do better, B&H Council. We’re waiting.
What do you think the solution is? More places or spaces?
Back in July 2023 Labour councillors were saying (Councillor Lucy Helliwell) that “we are working closely with council colleagues to transfer these vital services to other trusted providers.” so it’s appalling that nearly 18 months on things have not progressed.
It just seems that the council keep breaking promises in relation to children with SEND issues. Well done to those lobbying on them and making noise.
I agree, it was a good call to arms.
Unclear if this is mismanagement or a funding shortfall ?
Hmm. I think the provision just isn’t really there. These kind of places are complicated to run, even when you only consider their specialist nature, safeguarding, and governance. It can be very prohibitive to making these kinds of services work.
However, that doesn’t mean the council shouldn’t try to do more to help families in, as already described, an impossible situation.
As you stated above Benjamin, yes the services for children with special needs and disabilities are inevitably much more complicated to run – especially for children with complex needs – precisely because the needs of the children can be complex and so more specialist provision is required. However this shouldn’t mean that it is not provided! I am one of these parents of a child with complex needs who needs 1:1 support – I am struggling to manage taking care of him and all of his additional needs – which is a far bigger parenting load than parenting non SEND children – as well as looking after my other two children – as well as going to work to be able to raise my children. It’s a lot to juggle without enough support. If I need after school clubs and holiday clubs for my other children there is so much on offer to access across the city – after school clubs that I can book no matter how last minute, and holiday clubs with all kinds of activities and focus. For my child with complex needs there is very little! There is a real issue of equality here – and a lack of investment in childcare for SEND children. This makes it very difficult and at times impossible for parent/carers to even go to work.