Tuesday, 31 July 2012
NAS campaigners help create more opportunities and support for people with autism to find sustainable work
Maz embarked on his 1,000 mile mission to raise awareness of the difficulties that children with autism can face getting involved in grassroots football. He was inspired by his eight-year-old son Jake who has Asperger syndrome, and loves football.
Joined by friends Ed Jones (34), Dave Leeks (34), and Chris Patson (38), Maz kicked off his sporting challenge at 8am on Friday morning at Loftus Road, home of QPR FC. After visiting three other London clubs, the team headed over to Swansea before racing off to the Midlands and the North East, ending the first day of the tour at St James’ Park in Newcastle.
An early start on Saturday saw a visit to clubs in the North West, including visits to Old Trafford and Anfield. Throughout the tour, clubs donated items that Maz will auction off later this year for the NAS. Items that will be up for auction include a Manchester United shirt signed by
Maz and his friends smashed their target by three hours, ending their tour at Tottenham Hotspur’s ground White Hart Lane, where they had a well-deserved VIP tour of the stadium.
Thursday, 26 July 2012
Monday, 23 July 2012
A social worker contacted me to arrange my review of my support. I asked her after it was clear she knew nothing about autism if she had been trained in the Autism Act 2009. As she hadn’t, I explained it was law, and the following week I met her face to face and I asked her if she had read up on it, explaining that it is an act and therefore law.
I explained that you can’t represent someone at the panel (a meeting to decide how support funds are allocated) if you don’t understand autism because it means you can’t understand my needs. I then submitted a complaint.
The purchasing manager then e-mailed the head of training and copy and pasted from the statutory guidelines the duty that the NHS LA and foundation trusts have for training. Here it is:-
The result of my complaint is that social workers have now signed up for the training available in the borough and after this email from the purchasing manager hopefully more training will be provided.
By Robyn S
Monday, 16 July 2012
"Being good at SEN must be seen as part of what makes an excellent school, not just an optional extra" says NAS Ambassador Andrew
As one of the most significant reforms to SEN in the past 25 years, the proposals have understandably raised concerns among families living with SEN. Many have questioned whether personal budgets are suitable as a means of providing support to children with special needs, and how this will fit with the existing system. As well as this, many thought that the single assessment might lead to a lack of proper assistance for those who did not meet the criteria. Finally, there are concerns about how the plan for a single assessment and personal budget will fit together with the government’s plans to give more autonomy to academies and free schools.
The Labour Party policy review hoped to do two things, firstly, to help provide the Labour Party with a response to the Green Paper. Debate is critical in any democracy, and we hoped that through conducting a review with the input of experts in the education and disability sectors, as well as the parents and carers of disabled people (and some disabled people themselves), we could provide a robust contribution to the public discussion on SEN. The second aim was to form the basis for the Labour Party’s manifesto for the next General election, meaning that ultimately what we decided, in consultation with others, could become policy and improve the lives of thousands of children with SEN.
My role was to provide some input into the review from the perspective of someone with Asperger syndrome who has been through mainstream education. I can’t claim to speak for the experiences of all people with autism, but my own life experience is something which I tried to bring to bear in my role as a panel member. I felt relatively inexperienced as 22 year old asking questions to people who’ve spent the best part of their professional lives helping disabled children, along with those families who deal with it every day of their lives, but I hope I've done something positive for those with SEN.
There were four sessions of the policy review: an outline of the Green Paper, teacher training and specialist professionals, identification and provision, and accountability and local authorities. Among the many contributors, there seemed to be a general consensus. All schools should have teachers who are trained to identify and support those with an SEN, and this must form a much greater part of teacher training than it does currently.
Being good at SEN must be seen as part of what makes an excellent school, not just an optional extra. Parents should have a legal right to have their children’s needs (as identified in the single assessment) met. Finally, local authorities should be examined to make sure they are meeting the needs of children with SEN, with sanctions for those who are not.
I was able to have the opportunity to participate in the policy review through the help of the NAS. Having worked with them before, I was keen to sign up as an Autism Ambassador to continue working with them to promote the rights of autistic people and their families to live a life free from discrimination and to have the best possible opportunities to things which many people take for granted.
By Andrew Rhodes
Wednesday, 11 July 2012
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