Hello everyone, just thought I'd give a quick update in how things went at the Autism Summit last week...after considerable pre-match nerves from me, I'm really happy to say that the event went extremely well, I even managed to get my little speech out, David Cameron style (technique not content!), in full and to a room of confidence boosting nodding heads. A decent number of people showed up and I was impressed by the representation from West Sussex County Council and the NHS.
Nick Herbert, my MP, was a genuinely committed and interested Chair and I got a real sense that this was something which he has taken very much to heart. I was first up and that gave me the opportunity to set out some of the main issues raised by the Green Paper, which I think our local agencies could develop to create a better picture for the provision of local services for people whose lives are affected by autism.
I raised the need for a single, comprehensive directory of local autism specific services, something that could easily become part of the local offer, the need for autism specific training across the board - to include not just school, teaching staff and SENCO's, but health visitors, social workers, child minders, LA staff - to become mandatory, and a recommendation that local services must be available to all children and young people with a diagnosis and not just those with statements or EHCP's.
One of my big concerns is that, as the new single assessment tool is developed, it will start to operate in a way which means that children on the 'high functioning' end of the spectrum will fall outside it's criteria. There is evidence from the Pathfinder Group here in Mid Sussex which shows that this is already happening and I am very concerned that these children will in the future fall outside the systems which exit to give them the vital support and intervention they need. The Government is clear that it wants to reduce the numbers of children with SEN and this ideological goal appears, for the moment at least, to be finding it's practical application in the new single assessment for an EHCP.
I was also very keen to stress that families must be a key part of any development of new strategies and local services. Summits like this one are great, but the views of children and young people and their families need to be heard regularly, and actually then used to shape policy going forward. It was encouraging therefore to hear how Katie Glover, (Principal Commissioning Manager Learning Difficulties WSCC) is developing the West Sussex Autism Strategy in very close partnership with local families - she remarked that the (at best, unimaginatively, named) 'Vulnerable Adult Group', which attempts to draw together services and support for adults, families, careers, would not exist had it not been for the input of local families.
It remains unclear whether something like this will happen for children, the local offer seems a good opportunity to do so and John Philpot (Principal Manager, Special Needs & Disability, Children’s Services WSCC) certainly seemed very keen to foster closer family/council connections. This is definitely something I will be following up. This also clearly leaves the possibility of a join up between child and adult services hanging in the balance...'Vulnerable Child and Adult Group' anybody?....
We heard a lot from the various council agencies about what work they are doing now or plan for the future and as the session went on, the sheer vastness and disjointedness of this patchwork of disparate agencies purporting to provide 'autism' services became for me the real stand out issue. One mother who gave frankly, harrowing testimony of her struggle to find support for her 15 year old son, stood up at one point and said, "all these services, all this support...I had no idea it was there". Clearly work needs to be done to create a joined up 'directory of services' or 'portal', which not just well informed and autism specific, but accessible and well signposted.
I'm going to let the dust settle for a couple of weeks - I think local agencies always expect to get a bit of a hammering (and they did in part!) and I'm much more of a carrot than stick kind of a person - and then get back on to the council.
The summit also heard from Richard Brown of Autism Sussex - a local charity making direct, grass roots interventions - who suggested an autism partnership board, comprising families and the council. I think this is a good strategy, and I intend to chat with him about how we can progress his idea. I want to be positive and practical, little by little I think we have a real chance to make positive change.
At the summit we started a relationship and I hope it will be productive. Here's a link to some local press coverage and a nice little pic of Nick and his 'autism' parents:- http://www.spiritfm.net/news/sussex-news/710738/parents-call-for-better-autism-care-in-west-sussex/
By Victoria T