Tania's note: Today we're welcoming a new columnist to SNJ, Catriona Moore.
Catriona is the parent of a child with complex needs from the rare disease, Rett Syndrome. She works part-time as policy officer for a national disability charity. When her younger daughter was diagnosed with Rett in 2009 shortly before her second birthday, Catriona found herself dealing in practice with things she’d previously thought she understood in principle. She's passionate about improving the lives of disabled children and their families, and making the systems that should support them work more transparently and equitably.
Today, her first article is about something many of us can empathise with, especially as we're still in the middle of it... coping with the long summer break when you have a child with disabilities and few local facilities.
Obeying the law means making summer fun accessible to all
I hate that I’ve become a parent who hates the long summer holidays. Like the Grinch who stole Christmas, the mother who fears and dreads six weeks of unstructured time with her children is no-one’s idea of fun.
So mostly I try to hide it. I try to pretend – mainly to my daughter – that a long break from the school routine will be FUN. She humours me for short periods, but she’s pretty unconvinced. Ten years old and with a whole assortment of complex needs (she has Rett syndrome), my daughter knows what she likes and likes what she knows. And what she knows and likes best is her school and the daily routine of term-time.
Most parents, I am certain, have periods when they struggle to occupy their children in the holidays and when they fret over the whole business of juggling work and childcare and all the other commitments of life. But typical parents of typical kids have various options. There are holiday clubs, improving activities such as week-long art or drama ‘camps’, trips to stay with grandparents, reciprocal arrangements with other frazzled parents.
None of these are an easy option for a child like mine. Non-mobile, non-verbal, partially tube-fed, prone to seizures and feistily opinionated, she requires a high level of special provision wherever she goes. But she is no less keen on doing fun and interesting things and spending time with other children than are her typically developing peers. Spending the whole summer at home being cared for by adults makes her frustrated and sad. It also risks her losing some of the skills that she works so hard at school to develop.
Complex arrangements needed for complex children
Just as much as any other child – possibly in fact more so, because her ability to occupy and entertain herself is so limited-to-non-existent – she needs stimulating activities. Places to go, people to be with, things that are designed for her to participate in, with all the understanding and support that she needs.
As her mum, I want her to have these opportunities. But simply as her mum, I can’t create them for her. With her older sister, it’s pretty straightforward: I find something, pay for it, take her there, and listen to her tell me about it later, so I know what it’s been like and whether it’s been a good experience for her.
But for a child with severe disabilities, activities outside school have to be carefully planned and resourced – and monitored and evaluated, as our children can’t easily tell us if something isn’t right. The bottom line is, I can’t send my daughter to something that doesn’t exist.
Even if funds – our own private resources or the direct payments we receive from the council for her – were unlimited, we can’t pay for something that isn’t there. Sorry to state the obvious. But a single family can’t create the kind of holiday playscheme that works for my daughter. Even a group of families working together will struggle. It has to be commissioned.
This is the job of the local authority. Each local authority knows, or certainly should know, how many children with special needs live in their area, what their needs are, and what provision exists locally to meet those needs. They should be able to see where the gaps are, and have a plan to fill them. This is how the Local Offer is meant to work, but often doesn’t. They should know all the relevant local organisations and sources of expertise, and work with them to make sure that something is there for every child.
Call it strategic commissioning, place-shaping, market-shaping, whatever you like – but it has to be done by an organisation that has an overview of a whole area and the people within it, and the authority and resources to make things happen. That’s what councils are for! They don’t have to provide everything themselves, but they need to make sure someone does. And their priority should be creating communities that include everyone.
The head of the Children with Disabilities Team at my local council doesn’t see it that way. Earlier this year she told a roomful of parents at my daughter’s school: ‘They’re YOUR children.’ Meaning, the council doesn’t see itself under any obligation to provide anything for our complex children in the school holidays, and it sees our children’s needs as our own private problem.
Apart from being wrong – the law around short breaks is clear that local authorities have a duty to give disabled children the opportunity to lead lives that are as ‘normal’ as possible – isn’t this depressingly shortsighted? Well-planned support for families like mine enables us to get on with our lives without dramas or crises. We don’t want to be constantly calling on the council for things. But withholding the help that makes a semblance of ‘normal’ life possible, increases the risk that families will tip over into crisis. (A much more costly development from a local authority’s point of view, as well as heartbreaking for the families concerned.)
Limited places and hard to access
There is an exceptionally good holiday playscheme in my area for children like my daughter, run by a local charity that specialises in making things as inclusive, accessible and fun as possible. My daughter loves it: the days she spends there are the highlight of her school holiday, because she gets to socialise, experience new things and have a little independence from a hovering parent. She loves the routine, the people and the fact that it’s a bit like school but without things she finds tiresome like maths or physiotherapy.
But places at the playscheme are typically limited to a very few days, grudgingly offered by the council at the very last minute (making it very difficult for both families and the provider to plan) and inaccessible to many families because of the level of financial contribution required and the absence of transport for children to get there. Perish the cynical thought, but it’s almost like the council wants to throw as many obstacles as possible into families’ way, and then say that they made places available but they weren’t taken up.
The benefits to my daughter of good, well-planned holiday provision are central to the outcomes set out in her Education, Health and Care Plan. That’s why a specified amount of this type of provision is written into her plan, in Section F, as part of her overall education.
Getting this agreed when she transferred last year from a statement to an EHCP was surprisingly straightforward. Getting it implemented – and despite our most sustained and strenuous efforts, it has only been partly implemented – was a whole other story. It turns out that the Children with Disabilities Team sees EHCPs as the responsibility of the council’s SEN department: so much for getting everyone to work together around the needs of the child.
No-one on the social care side had time to attend the EHCP ‘co-production’ meeting, or read a draft of the plan. Neither did they have time to respond to my many emails asking if plans were in place to commission the service that my daughter’s EHCP said she should have, and that would provide an essential benefit to other children in our area. The point is that it can’t be provided for just her: it has to be in place as a service for the very specific group of children who need it.
When the council did finally accept that what they’d said couldn’t possibly be in her EHCP was in fact there in black and white, it had to be provided. But we’ve been warned that it won’t happen again next year. Having somewhere to take her for part of the holidays, where activities are designed for her needs, with trained adults to help and other children for her to smile at, is seen as an unreasonable expectation.
My local council is, oddly, putting barriers up to a service that it should be proud to be associated with. We’ve been reminded that ‘they’re your children’. But we can’t do this by ourselves, and the law says we shouldn’t have to. I think it’s okay to fight for our children’s right to have fun.
When her younger daughter was diagnosed with Rett Syndrome in 2009 shortly before her second birthday, Catriona found herself dealing in practice with things she’d previously thought she understood in principle.
She juggles her work as policy officer for a national disability charity with caring and advocating for her daughter. She is passionate about improving the lives of disabled children and their families, and making the systems that should support them work more transparently and equitably.
Latest posts by Catriona Moore (see all)
- My “control freak’s guide” for my disabled daughter’s dignity and care in hospital - December 3, 2018
- Partnering with clinicians to reverse Rett, my daughter’s rare disease - February 28, 2018
- Fighting for my disabled child’s right to summer fun - August 23, 2017