Karen's campaigning in Cheshire East

SEN Provision for children without a statement

In March 2012 we had a meeting with Child and Adolescent Mental Health Services (CAMHS) to discuss next steps for our son as we had been told about Individual Pupil Funding (IPF) as a stepping stone to a statement. Whilst at the meeting it became apparent that IPF was ending the following April so they suggested that we go for a statement.

You can imagine my surprise then, when in February 2013 a parent posted a letter on our parents/carers forum on Facebook that she had received from Cheshire East informing them that IPF was ending in the April 2013  –  talk about short notice! I was shocked that the council had waited until February to notify parents when CAMHS obviously knew last year!

I have recently discovered that IPF was a Cheshire East initiative to cut down on the wait for pupils to access funding for support, so for it to have stopped so suddenly is outrageous.

The amount of posts on the forum was phenomenal; I knew I needed to act. So as part of my role as an Ambassador for The National Autistic Society, I contacted our local MP.

Luckily our MP has been very supportive of parents with children with Special Educational Needs (SEN), especially those with Autism. In my letter I included comments from the forum so that he could see what impact the cuts were having on everyone, not just children but also teaching assistants losing their jobs.

He was fully behind our concerns and I received a letter reassuring me that as part of the revised SEN Code of Practice it will have to show how they are going to meet the needs of children who don't require an Education and Health Care Plan.

Funding

But following a letter from my son's school, it became apparent that there was a funding issue which also needed to be addressed. The letter explained how the Government state that schools receive on average £10,000 which is made up of basic entitlement and additional pupil funding for children identified as SEN, but in reality the primary school’s allocation is £5,216.55.

Cheshire East is one of the most poorly-funded authorities in the country which means that SEN allocation is much lower than other authorities. I wanted to know why and get more information for parents.

So I got in touch with our MP again with the concerns over the cuts in funding and how it will affect children without a statement. He replied with the following attached reply from our Director of Children, Families and Adults:

“In order to attempt to further mitigate some of the funding pressures upon schools, I have taken the decision to release an additional £2m for SEN from the DSG contingency. Whilst this in itself does not eradicate the current pressures experienced, it does reduce some of the pressures and ensures that schools will have the SEN resources to meet the needs of those pupils with SEN with Statements.”

This was really good news but we were still concerned about the pupils without statements who have SEN, so we were encouraged to receive another letter from our MP. This time he said that he was organising a meeting with the Minister of State for Schools, Cheshire East Council and another MP to discuss the funding issues in Cheshire.

In the meantime I tried to encourage parents to be patient as they were eager to do protests about what was happening. I reassured them that while going down this route may take time, it might have a better outcome. Should this avenue fail, we could then involve media and protests.

I was then invited to attend a meeting with our MP, accompanied by another parent who was also concerned about these issues. He was pleased to inform us that after the meeting with the Minister and others, they had agreed to focus on three main areas which will hopefully help.

These are:

1) Autism school provision – they are now pushing for an answer from the Department for Education on the go-ahead
2) Capital funding for post-16 to be made available
3) Transitional arrangement funding for post-16

We were really pleased about this but there were other issues unresolved, such as job losses and cuts in funding for children with SEN without statements, the lack of information from Cheshire East Council and schools in general and the need to push for a meeting. He was fully behind this and was surprised that Cheshire East Council hadn't been forthcoming in providing information.

On the back of this, I’m now putting in a request for a meeting and listing the issues that he could try and help us with.

Making a difference as a Councillor

It has been over three weeks since I was officially elected as Councillor in South Heaton, in Newcastle. And what an exciting and busy time it’s been over the last few months, with a well-fought election campaign and many hours of pounding the streets and meeting people beforehand to gain the welcomed success achieved on 25 April. Not least grasping the opportunity to raise awareness for The National Autistic Society in personal campaign literature along the way. Every little helps!

It was great to be out and about meeting residents in the ward and feeling able to share my personal story and purpose for wanting to become involved in local politics in the city. As many families and individuals know there have been huge amounts of excellent work undertaken up and down the country by the NAS, other charities and public sector organisations over the years to support those individuals and their families living with autism, but as with all things more can be done to improve things such as levels of awareness, access to services, therapies, pathways to diagnosis, training for staff and real choice, to name but a few. The approach to all of the aforementioned is ever more important in the current economic climate where funding is limited and organisations are feeling the pressure.

Running for Council was a natural step for me personally, and one where I felt I could make my best contribution, having been inspired at the NAS training event in London by speakers, NAS staff and fellow Ambassadors. Being able to make a positive impact and contribution to improve the lives of people and families living with autism was the way I hoped to go forward and so the journey began.

Since being elected I’ve managed to take part in a ‘round the table discussion’ along with others about ‘Making Rights a Reality for Disabled People’ meeting Liam Byrne MP and Anne McGuire MP. It feels rewarding to see that the hard work to gain election success has provided the opportunity to feed into such discussion and perhaps even future policy. It is important to me that the views of real people, tackling and facing issues on a daily basis are shared with those who can make things happen! Even in the smallest steps.

For me this is just the beginning of a two year journey as Councillor (more beyond if I’m re-elected) to progress work towards a better life for all residents in the ward and across the city –impacting, challenging and debating where I can across health, social care and education and other services to improve quality and choice. As part of that work remit I intend to keep the vision of individuals and families in mind as I evolve into my new role and take on the great responsibility of serving the public.

Denise

Raising Awareness of iss facing those with autism from Black and Ethnic Minority (BME) Communities

Campaigning is a crucial part of raising awareness. Being on the spectrum or being the carer of someone on the spectrum is an experience that most people find difficult to comprehend. Therefore as difficult as it may be, we need to be the driving force behind campaigns that highlight autism and how it affects everyone around us.

On 12 February, the NAS, with the support of Diane Abbot, MP, launched a new project to raise awareness of the specific issues facing those with autism from Black and Ethnic Minority (BME) Communities. This was a one of a kind event which had a fantastic turnout and achieved attendance from MPs and Peers from across the political spectrum.

So why have a BME specific campaign?

In a report by NAS (Missing out, 2007) it found that 24% of BME children had been excluded from schools, while 78% said their local authority did not provide support to their children during exclusion and more than half of parents from ethnic minorities whose children have autism did not have a choice of school. BME parents were also “significantly” less satisfied with their child’s academic and social progress compared to their white counterparts. This painted a stark picture of access to educational services within the BME autism community.

Seven years on and these issues are still pertinent; more so, given that resources are rapidly declining and unfortunately those who demand services are more likely to gain access to them.

There are clear issues which highlight the plight of many people with autism within the BME community. Firstly, evidence about the prevalence of autism in various communities and its impact on family life is inconsistent. Evidence has highlighted that communities may not be aware of autism, their rights and relevant services. Finally, services that are available do not always meet the needs of these families.

For me personally, I have never thought about the link between ethnicity and disability and how a substantial amount of the autism community is currently facing double discrimination. I suppose this is more of a reflection of how insular the fight becomes for you on a daily basis that you lose sight of the bigger picture. Going to the event, was an opportunity for me to think about the greater impact current changes are, and most certainly will be, having on all of us. If members within our community are not able to access even the most basic help with regards to finding much needed support then we clearly are failing in our own roles as advocates and champions. I hope this event is one of many that will pave the way for highlighting this issue more and make accessibility to information that little bit easier.

I am delighted that we were able to get a substantial presence for autism within parliament and I am extremely hopeful that it will provide some much needed support to our fringe members who do on a daily basis feel even more marginalised.

PigPen tribute for Gabriel

PigPen held it’s first show in 9 months at the end of February in memory of it’s co-founder Gabriel Hardisty-Miller who passed away last year. It was held at the spiritual home of PigPen- The Macbeth, Hoxton. If you’ve been to The Macbeth and you’ve been to PigPen, you’ll know why.

Gabriel was the brilliant taste-maker and curator behind PigPen. He was a non-verbal young man with autism. During the four years of PigPen he chose a plethora of electric and excellent acts using his yes/no comm device. He was a tireless campaigner with the National Autistic Society, a role model for raising awareness and encouraging people to think differently about disability.

It was only fitting that all profits form the PigPen Memorial Show went to the NAS.

The proceedings kicked off with a poignant procession from Gabriel’s estate down the road to the Macbeth. The procession was part of the Dron Festival at Hundred Years Gallery, Gabriel’s famous PigPen throne (that he always sat on during the shows) was decorated with garlands of flowers and lights and processed with bell ringing family and friends.



From here the marathon of performances began. The first half of the show saw PP stalwarts Eddie Halliday, Robyn Steward, Bram Arnold, Captain Spoon and Charlotte Young take to the stage for acoustic and performance art sessions. Then followed a beautiful tribute to Gabriel by jazz singer Sarah Niles with Rob Grundel on keys. For anyone that remembers the Roy Davies Jr, Peven Everett dance floor classic- ‘Gabriel’, Sarah did the most moving version of this.

As ever, DJ’s Brian Turner (AKA Bram Arnold) and Good Grief kept the crowd bubbling in between acts with a trademark blend of soul, indie pop and odd music from their varied record collection. The vegan chilli ran out within the first couple of hours and there was the latest edition of ‘Snizz Comics’ by myself.

Christine Binnie (with help from Tom Madders of the NAS) ran the PigePen Art Raffle with gusto. With such a fantastic array of prizes it’s not surprising this alone raised £250. We had artworks by Robyn Steward, Lewis Heriz, Martin Kingdom and myself, Dean Atta’s debut poetry collection plus a £150 meal voucher at a fancy restaurant up for grabs. Needless to say, all prizes went to very happy winners!

The first half of the show ended with one of South London’s finest voices and began with the same- Mr Joel Culpepper (one to watch people), following him PigPen legend with a capital L- Tim Ten Yen, poet extraordinaire Dean Atta and despite motor troubles- Honkeyfinger with their trippy, sweltering blend of psych -swamp rock. How could we possibly fit in anymore you say? Well we did.

United Vibrations opened their set with their beautiful and moving piece ‘Don’t Be Sad’ and continued to uplift us all in a way only UV could. Finally DJ/Producer Noel Eeteks (who grew up in the house next door to Gabriel) took the helm on the ones and twos and saw PigPen well into the night.

Not only was this a very special night that managed to raise £520.60 in Gabriel’s name, it was also a show that saw Gabriel very much present. The acts he chose and nights he curated were an extension of his unique personality, it felt as though the PigPen Memorial Show was as close as we could get to having him with us again. It was a blast from an entertainment point of view, also spiritual to feel his presence again. A huge thanks to all involved- far too many to mention.

On a final note, many people have been asking me on the future of PigPen and Snizz comics, all I can say for now is watch this space….

Ben Connors

David's Art Exhibition

I began painting as a pastime in late 2006 so I had something to do in the run to the Christmas of that year after what had been a difficult year.

I began painting on Watercolour paper and even managed to do some paintings for my family as Christmas presents. Within 6 months I had "progressed" to painting on canvas using pallet knives in addition to the trusty paintbrush.  I was mainly doing abstract paintings as I was finding my way as my art skills developed.  In addition to the paintings I was attended free art classes including Jewelry Making & Pottery, skills at which I also became very good at. 

I was making jewelry for friends and members of my own family when it came to Birthdays and Christmas.

In 2007/2008? I held my first art exhibition which was covered by SLC in their newsletter at the time.  The exhibition was held at BBC Radio Lancashire and we appeared on "Gilly in the Afternoon" hosted by BBC Radio Lancashire Presenter John "Gilly" Gilmore and we discussed my paintings & Autism.  In the following years I displayed my paintings whenever the opportunity arose at various events & locations like Worden Arts Centre when I was involved with the now (sadly) defunct Shaw Trust Artworks.

In 2011 I sold a canvas painting of a church to a friend in Manchester.

When Pop Group Oasis released the music video "The Masterplan" I became interested & inspired in the paintings of L.S.Lowry who became famous for his paintings of industrial landscapes and of course "matchstalk men and matchstalk cats & dogs".  I began doing industrial landscapes and paintings of old mills & houses using an old maths drawing set and acrylic paints.  Whenever I was out & about I sometimes took pictures of interesting buildings & landscapes and these became a genesis for some paintings, even though I used a bit of my own artistic licence and continued to do some abstract paintings.  I'm a regular visitor to the Lowry Gallery on Salford Quays, Manchester.

Before Christmas 2012 I saw a chance to display my canvasses at Chorley Library and they agreed.  The exhibition runs from the 3rd - 16th January but could run until the 31st January.

All the paintings are for sale.

David Robinson
(Chorley)

Maz's fundraising diary

With my 40^th birthday approaching and feeling slightly dubious, I decided I wanted to do something that could make a difference. Something with depth and worthwhile. Asperger syndrome is something that is close to my heart and I wanted to raise awareness and funds for children on the autism spectrum.

My idea was to gather some close friends and organise a trek in Snowdonia on my birthday. With two months to plan the trip, I contacted The National Autistic Society and they kindly supported me with ideas and importantly with helping receive press coverage. The trek was a success and raised over £500.



Maz and his friends on their Snowdonia trek

With the first event under my belt, I didn’t want to stop there, so I decided to carry on and organise more activities. I set up my own charity page on various social networks to help raise more awareness of autism. My next mission was for me and a group of friends to visit ALL 20 Premier League clubs in just two days!

Although there are so many children on the spectrum who love to play and watch football, there are not many football coaching schemes suitable for them. Local football clubs are often unable to cater for young people with a disability who want to develop their footballing skills to get more enjoyment from the game, without necessarily aspiring to become professional. This means that many children are missing out on the opportunities that are open to non-disabled children.

We received some great responses from clubs such as Chelsea and Spurs, who invited us for exclusive VIP days at their grounds!

A VIP tour of White Hart Lane, Spurs’ ground

After visiting all the clubs in 33 hours, I then arranged an Auction Party to sell all the memorabilia we had collected on our tour. The items included a signed Spurs top, signed Chelsea football and a signed Pelé top!

On the night we managed to raise over £3000 and had a great time increasing awareness of autism.

Here is to more events in 2013!

Maz Ataie

Great work by AAN Ambassador Akib in Birmingham

Akib Qadir from Birmingham has been getting involved with what's happening in his home city. Over the past few months he has met with Birmingham's autism lead and has been writing a report on his personal experiences of diagnosis and trying to access support
 

At their meeting this month the Birmingham Autism Partnership Board discussed his report and the recommendations for change that he proposed. They are going to use this to strengthen and improve the local strategy that they are now drafting. They have also invited Akib to play a leading role in the public consultation they will be carrying out on their local strategy in the new year.

Akib has also now approach by a member of the National Programme Board who is keen to hold a similar discussion on his report at a national level.

Commenting on his success with the Partnership Board, Akib said "It's really good to be involved in the heart of the decision making process as no decision about autism must be made with out us."