As Nikki Kimber and Sue Armstrong sip tea in Sue’s kitchen, they could be any two friends getting together for a catch-up.
But the St. Annes mums share much more than the occasional cuppa – they also know the joys and challenges of living with a severely disabled child.
“Thea is non-verbal and has various other issues,” Sue says of her 11-year-old daughter.
“She has a condition called pica which means she eats everything. She is a bit of a live-wire, but she’s lovely – very sweet and happy.”
Like Thea, Nikki’s 17-year-old daughter, Antonia, is also unable to speak and requires round-the-clock care.
“Antonia’s beautiful, funny and curious – but she’s also a real challenge,” Nikki reflects.
“She’s a complex young lady, but given the opportunities, she can absolutely grasp life as it goes on around her.”
Nikki and Sue’s shared understanding of that complexity has given them common cause in a campaign against the proposed removal of a short break scheme which offers parents and carers like them brief periods of respite from their otherwise relentless responsibilities.
A group of families from across Lancashire is planning to challenge the potential cut to Lancashire County Council’s Breaktime service for children with special educational needs and disabilities, which was earmarked for closure when the authority set its budget last month.
County Hall has spent the past seven weeks asking the public for their thoughts on the proposal – and insists that it has the financial flexibility to change its mind if the responses persuade it to do so. The consultation ends next Monday – but, irrespective of the outcome, Nikki says a legal ruling is needed to give families certainty about what they are entitled to.
“I think it will benefit everybody – the local authority included – because at the moment, this is a very grey area. I have an idea of what I should be able to expect and they have an idea what they should be providing – and the two don’t match up,” Nikki explains.
“But it’s not a big stick to beat the council with. Let’s just pick this apart and see who’s right, so we’re not back in the same position next year.”
Breaktime provides group activities tailored for the needs of the children who attend them across the county. Some of the sessions are organised by charities which are funded by the county council for the service they offer.
Crucially, however, children and young people do not need to have been assessed as requiring a social care support package in order to be eligible for Breaktime activities. That opens up the service to many more users than might otherwise be the case.
Antonia and Thea do both have a formal assessment which entitles them to other respite care – but their respective mums say it would be an over-simplification to assume parents in their situation would not be affected by any change to the system.
“Whilst I’m exceptionally grateful and realise I am extremely lucky to be in receipt of a support package, that package has to benefit Antonia,” Nikki says.
“It’s no good sending me a carer in the holiday when that carer wouldn’t have any quality places to take her if these groups close because their Breaktime funding has been cut. I don’t want her to just spend time with a carer or her family, I want her to be with her friends.”
While Nikki and Sue may be reluctant litigants, they say they are battling for Breaktime to be retained not just for themselves, but also those families without a social care assessment – and who could be stripped of the support which they have relied upon if the service is cut.
Sue says there are no realistic alternatives for young people like Thea and Antonia.
“Mainstream clubs are just not set up for a child who needs a changing facility or who runs out of a room because something happens [to scare them].
“And quite frankly, these places are not even willing to take them. They might be subtle about it, but they don’t really want children like ours there,” Sue suggests.
Nikki – who, like Sue, works most of the week – adds that the contrast between life for families with disabled and mainstream children is growing ever more stark.
“If other families had no access to any clubs or activities over the holidays, imagine the outcry you would get from those parents who work and take for granted that they can drop their children off at any number of places.
“They say the Trafford Centre is the biggest care facility in the North West – because that’s where all the carers take people and push them around.”
And there are plenty of people who seem to share the sentiment that disabled youngsters need somewhere more stimulating than a shopping centre to spend their time.
Almost 90 donations, totalling more £3,000, have been pledged to a crowdfunding effort to get the Breaktime legal challenge off the ground. The target is for £5,000, but solicitors have already been set to work.
James Betts from Irwin Mitchell Solicitors said the firm’s aim was to “ensure the council complies with its legal duties when making this important decision”.
“We think there are several issues which need to be investigated, including whether the plans give rise to a breach of the human rights of disabled children and children with special educational needs, whether the plans are being properly consulted upon and whether the council has considered all of the relevant information ,” Mr. Betts.
It is expected that the county council’s cabinet will make a final decision in the summer.
“We really don’t need all this,” Sue sighs.
“The breaks allow me to spend time with my older daughter and to clean the house and go shopping – normal things which I can’t always do.
“Our daily lives are all about balancing logistics, but you just get on with it.
Nikki says that decision-makers need to recognise that ‘getting on with it’ becomes that much harder for the parents of disabled children whenever support is withdrawn from them.
“Where’s the kindness and the understanding of what our families go through?” she asks
“It isn’t all about data or pushing pots of money around – these are real-life families and issues.
“Recapturing some empathy and being able to put yourself in someone else’s shoes might mean this kind of decision is not made.”
WHAT THE COUNCIL SAYS
Edwina Grant OBE, Lancashire County Council’s executive director for education and children’s services, said: “A final decision on this proposal will be taken by Lancashire County Council’s cabinet.
“The decision will be taken at the earliest opportunity after the consultation has ended and the feedback has been analysed. A recommendation will be presented to the first cabinet meeting after this has been done.”
“I’D FEEL LOST WITHOUT IT”
Jake Graveson has been coming to the Breaktime-funded Play Inclusion Project (PIP) in Preston for four years. Now 18, he is about to move from visitor to volunteer and wants to make other young people feel as welcome as he was made.
“I’m looking forward to it – I just enjoy being with my friends,” he smiles.
One of those friends, 17-year-old Dale Zaporowski, does not hesitate when asked what he enjoys most about the weekly sensory club at the Space Centre in Ashton.
“McDonald’s,” he says, referring to the fortnightly treat which the group receives after alternate sessions.
At the thought of losing PIP, he says he would “feel lost”.
“I’d struggle to find another group – I found this one and I like [it],” Dale explains.
“IT’S A FALSE ECONOMY”
It is almost fifteen years since Joanne Barnes walked through the doors of the Play Inclusion Project (PIP). During that time, it has expanded the activities which it offers to young people with special needs and disabilities across Central Lancashire, Fylde and Wyre.
Now the charity’s manager, Joanne says it is facing an “uncertain” future if funding from Lancashire County Council’s Breaktime service is cut. Around half of the organisation’s income comes from County Hall for providing respite care after school and during the holidays.
The authority has proposed cutting the £1.04m annual budget for Breaktime services like those provided by PIP, as part of a package of measures to help it save £77m over the next twelve months.
Many of the young people who benefit from Breaktime have not had a formal assessment of their social care needs – and so could become statutorily-entitled to help from the county council if they are judged as needing it. Joanne says that could prove “a false economy” for the authority in the long-run.
“I realise the council have got to make some tough decisions,” she says.
“But we support 79 young people via Breaktime and I have calculated that it would actually cost them roughly £50,000 more to provide three hours of [statutory] support a week for 12 months – and yet we provide more than three hours’ respite to most of those children.”
Joanne predicts that parents without an official assessment of their child’s needs will now ask for one – and she hopes that, if they are successful, they will use their so-called “direct payments” to keep attending PIP.
The risk of increased social care costs is something which is recognised in the council’s own assessment of the potential impact of any decision to cease Breaktime funding.
While a budget report notes that there are other non-statutory services to which parents and carers can be directed if Breaktime ends, it also concludes that “there may be reduced opportunities for children and young people to access provision appropriate for their needs”.
Joanne says the value of services like PIP – which operates from third party locations in Preston, Fleetwood and Thornton – should not be underestimated.
“If parents are going to get a quality break, they need to have confidence that their children are with a care provider that is going to meet their support needs – they don’t want to be worrying that they’ll get a phone call every two minutes to pick them up.
“A lot of the young people [who attend] have health support needs, so they need to be accessing activities with qualified staff.
“It’s so important these children have activities like those we deliver so they can form friendships, learn life skills and be out and about in the community with support – just like other young people their age, that’s what [they] want to do.”