The Department for Education is in a large shiny new office, full of desks and chairs and meeting rooms. We were whizzed upstairs in the lift by Sarah, a lovely lady whose job it is to reach out to 'the public' and we were offered a cuppa whilst we introduced ourselves to the other bloggers present.
There were 10 other lovely bloggers there, who have children with a range of special needs - between us we covered deafness, blindness, sensory issues, heart conditions, dyslexia, autism, Aspergers, and medically complex yet undiagnosed. It was very apparent as we all discussed our 'journeys', that we generally had a lot in common. Mainly, the fight to provide the best for our children.
|SEN Bloggers meeting Edward Timpson to discuss Children and Families Bill|
I'll admit I felt very important. Maybe that was because we were somehow made to feel like he was very important (which of course he is).
We were invited by Mr Timpson to tell our (short) stories and come up with one question or point that we'd like addressed. I had three, but cleverly managed to roll them into one... My goal in life for Sasha is the same as that for my other girl, and just what most parents want for their children - to be able to achieve to her full potential. To do that, she is going to need just a little more help from education, health and social services than the 'average' child. I think there's a strange attitude in this country that seems to suggest we are being greedy in asking for that. I don't ask for that kind of extra help for Tamsin, as she plainly doesn't need it. However I do have to not only ask but generally fight for any kind of help for Sasha, and that just doesn't seem right.
I took notes of the key points as Mr Timpson listened to each of us in turn, and I can honestly say that every comment which was made was a valid one and ones that I think all parents of special needs children can connect with. Certainly all of us in the room were nodding our heads as if we shared the same experiences. Our worries and wishes were as follows:
Nurture groups. This came out as a best practise idea which has been proven to be highly effective. The idea would be to hold these groups within schools, to work on emotional and social wellbeing of those who need it most. If time is given over to these young children in the first place to fully understand their needs, which may not actually be driven by a problem with learning per se, less time will be lost from teaching and they are therefore more likely to achieve their potential.
Culture change. As I touched on above, the local authorities seemed to be locked in an old-fashioned way of working, with attitudes of 'them against us'. The way forward is definitely person-centred, where the child with the needs should be at the centre of the circle and all parties should discuss together (child included, if old enough) what outcomes, small or large, are wanted for that child. To get everybody thinking like this will be a huge shift, and the example will need to come from top down as well as being fed from bottom back up.
Communication. There are too many areas currently which lead to misunderstanding. SENCOs (Special Educational Needs Coordinators) in schools are often not easy to get hold of, with many having full time teaching roles and therefore not available for those parents that need them. Budgets which are devolved to schools specifically for special needs are not transparent to those parents whose children could benefit from them the most. This links in with the previous point, and the situation could be helped by working in partnership.
Early Intervention and Early Support are key. Families are often, mostly in fact, turned away after being given a diagnosis with no real support services to turn to. Those who never get a specific diagnosis (SWAN - Syndrome Without A Name) are not offered anything at all. However those families who have children born with a disability are generally given enough support to make the difference.That brings us on to the next point...
Keyworking. For all these changes to take place, and for the load to be shifted off the back of the special needs families, an impartial key worker should be allocated to work with each family and with all of the services, to ensure that the child remains at the centre of the plan.
Statementing process. This is seen as adversarial at best currently. Parents of special needs children spend their lives fighting on top of what can be very stressful times just coping with those needs at home. The new Children and Families Bill is proposing a whole new process to replace statementing, and this process (the EHC plan, which I'll have to cover in another post) is currently being 'trialled' and 'worked on' by Pathfinder families (of which we are one, again to be covered in another post shortly) in various counties. We need to ensure that the new process is less of a fight, but also that it doesn't become more 'woolly' in that change.
As far as the Bill itself goes, we believe it's important that all 3 services - education, health and social care and involved in the new EHC plan - and held accountable equally. Currently it is still education-led, although the steps towards making the other services involved are appreciated. It is also important that the issue of 'timing' is addressed, to make sure actions are taken when they need to happen for the child (which is generally immediately). If no timescales are locked down, then parents can be left in a never-ending circle of nothing actually happening for a very long time - and seriously this could stretch to years, which is totally unacceptable. There's also a huge need to ensure there is enough resource to provide the service - in our county currently, I've heard from other parents that there is over a year's wait for certain CAHMS services. Can you imagine how much worse the behaviour, or family life, can get over the course of a year with no help or intervention?
Mr Timpson listened intently to all our messages, and gave us all time to talk - so much time in fact that he didn't really manage to do much speaking himself! Crafty, these politicians...
Much better though, than if we'd have had to sit there listening to him wax lyrical about what he was putting in place without getting any feedback. I think there's always the nagging thought at the back of the average person's mind that these types of situation are just PR exercises. However Mr Timpson really did listen, and ask us a couple of relevant questions, and I left the meeting feeling very positive that at least some of our thoughts will be taken on board and help to shape the Code of Practice.
Timpson for Prime Minister, I say! Watch this space......