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

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)

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."

A day in the life of an APPO: Adventures in campaigning

North-based Area Policy and Participation Officer (APPO), Eleanor Thompson, shares a typical day in this new role. APPOs are the policy and campaigns team’s representatives based in each of the National Autistic Society’s areas in England – the South West, South East, Central and North. It’s their job to empower local people with autism to campaign, to support branches with policy and campaigns work and to enable all the rest of the NAS to feed back to the central team about the situation for people with autism and their families in local areas. We now have APPOs around the country - to find out who yours is get in touch with us at campaign@nas.org.uk.

I’m up nice and early today as I have a meeting in Cumbria at lunchtime. My patch is really quite large (from Yorkshire across the country and right up to the Scottish boarder) so my days can involve some quite long train journeys!

After panicking, as ever, that I’m going to be late, I arrive at the station half an hour early, buy my tickets and settle down on the platform. I’ve brought plenty of things to keep me occupied so once I get on the train I start contacting some of the ambassadors I’ve been working with. Ambassadors are members of the Autism Action Network who have signed up to be advocates on behalf of the charity and to carry out a certain number of press, campaigns, or policy actions across the year. In return, we provide them with support for their projects when it’s needed. Work with ambassadors can be really varied. Some ambassadors have local projects or individual campaigns they are working on, while others are taking on the challenge of joining in with our national campaigns in their local area. Today I interview an ambassador for the blog about why she wants to get involved with the Undiscovered Workforce campaign. We’re always trying to think of new ways to encourage more people to take actions, and we really like to celebrate the achievements of our campaigners and media spokespeople. Do feel free to get in touch if you want to be featured on the blog.

Later, I turn to the results of a survey we’ve been running in conjunction with the Cheshire West and Chester branch. This survey is designed to feed back to the Local Authority on the experience of people with autism and their families living in Cheshire West and Chester. We got 111 responses to the survey, we were featured in a number of local newspapers, and even on the local radio. Now it’s up to me to pull the results into a sensible document, and then I will pass it onto the branch officer and we’ll talk about the next steps for the campaign and how we are going to present our findings to the Local Authority.

After a journey through incredibly beautiful countryside I arrive in Penrith where I meet up with Sara from the National Autistic Society’s North Area Development Team. We head over to the meeting together. It’s held in a café in this amazing community resource they have in Penrith called The Rheged Centre, which is apparently Europe’s largest grass covered building. Sara and I are hoping to work with Family Support workers in Cumbria to establish a local network specifically for campaigning. Because of the geography of the area, it can be hard for people with autism and their families to get together, and they often find it difficult to know how to input into the decisions that are being made by the Local Authority regarding services and support for people on the spectrum. I’ve drafted up some plans for how the network could work, and present it to the Cumbria Family Support Workers. They seem positive, so all that’s left now is for us to organise a venue and invite the attendees. If you’re Cumbria-based and want to find out more, do get in touch with me at eleanor.thompson@nas.org.uk.

Next I head over to Sunderland, to meet up with Charlie who runs a social group for local people with autism. She’s interested in getting some campaigning going with the group and today’s their annual summer barbeque so I’m going to go and meet them and see whether they have anything they want to campaign about. This is part of a wider move within the National Autistic Society to make sure that people using our services have access to campaigning, both nationally and in their local area. Chatting with the group members, it seems there are lots of issues that concern them, including employment, and while not everyone is interested in campaigning, there is a number of people who want to get involved. I make plans to come back to their next meeting and work with them on an action plan.

I hope this article has given you some idea of what we do as an APPO – as you can tell, it’s pretty varied and no two days are the same. If you have a local campaigning idea contact campaign@nas.org.uk who can put you in touch with the right person.

Hard work behind the scenes

I've taken part in the Undiscovered Workforce campaign by emailing my MP and local Councillors. I've also signed the petition about tick box benefits, completed the benefits survey and am currently working with Nadine Honeybone (The Autism Directory founder) to make Plymouth an Autism Friendly city. So far I've received interest from Plymouth City Bus who would like to sign up as a local business who would like Autism Friendly accreditation.

I am also helping Scott James (X Factor 2009) to raise £3000 to journey to Canada for an international autism festival where he has been nominated for the Performing Arts award.
 
Unfortunately my charity bike ride (Marco's Big Ride) has had to be postponed because I have tendonitis in my knees and until they heal sufficiently I am unable to train for the ride.
 
In September I will also be attending NAS head office for a meeting regarding the Adult Autism Strategy which I am looking forward to.

I have also set up an online radio show called Sounds from the Spectrum which showcases and celebrates talented artists who are on the spectrum like Scott James, Georgette Hilton, Carly Ryan, Martin Finn and many more. More information about this can be found on Facebook at www.facebook.com/groups/soundsfromthespectrum/ where you will find in depth details of all the artists I am featuring as well as videos and links to their individual websites where you can purchase CDs by them.

By Marco G

Raising awareness of autism, one story at a time

Ever wanted to tell the world about your experiences with autism? AAN Ambassador Helen Kelly explains why she started her blog, mumwithoutportfolio, and what she hopes to achieve through sharing her family's story:

I started writing my blog mumwithoutportfolio in July 2011, two months after my youngest daughter Emily was diagnosed as being on the Autistic Spectrum. There were a number of reasons why I decided to write this originally it was because I felt very alone and left to understand what it all meant for my daughter and our family but I also wanted to raise awareness about Autism and what it is like trying to see the light through the tunnel. I was very surprised by peoples reaction to my daughters diagnosis which ranged from well she doesn’t look like she’s autistic to she’s not autistic she just needs to learn. It was the drive to try and change people’s opinion of children on the Autistic Spectrum that spurred me on to write my blog because I am very much of the opinion that education brings awareness.

Topics I have covered throughout my blog posts have included shopping, school, friends and the death of my dad due to lung cancer. Although the posts haven’t always been upbeat they are always a true reflection of life and honest.

I have help pages on my blog which provide a bit of information and also directs people to the NAS website this is because I would not like to give anyone the wrong information as I am not an expert in Autism but I am an expert in how autism affects my daughter and my family.

I have received comments from people who I don’t know supporting me and have recently set up a Facebook page for the blog. I also tweet my blog page under the hash tag Autism awareness and I have met many people through this.

I would encourage other ambassadors to plunge into writing a blog, it’s free you can do it when you want to and most importantly you get to raise awareness and educate people.

Maz's 1,000 mile mission to make football accessible for children with autism

NAS ambassador, Maz Ataie battled against the clock last weekend on an attempt to visit all 20 Premier League football stadiums – in just 36 waking hours.  

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 England star Wayne Rooney and a football signed by the Chelsea team.  

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.

Maz will be writing a blog story very soon with more details about how he got on!

Undiscovered Workforce campaign gathers pace

We've had loads of interest from ambassadors and champions in our Undiscovered Workforce campaign on employment. The campaign asks MPs to take the lead in creating employment opportunities for their constituents with autism, by bringing together local employers, people with autism, the local authority and other services in the community. The aim is to raise awareness of the difficulties facing people with autism who are looking for work and to ensure there is specialist support available for employers, as well as employees, to help people with autism succeed in the workplace.

Helen Kelly, an Ambassador from Tyne and Wear, supports the campaign because she is concerned for her 12-year-old daughter who has autism. "Her future worries me", she says, "She will be trying to get a job and I think her autism will be a disadvantage. There needs to be more awareness of the condition out there and people with autism should have the right to the proper support in a job".

Although she admits she was a little nervous at first, Helen wrote to her MP on the issue - the first time she had ever contacted him. However, her feelings soon changed when she realised she'd been sent a standard letter: "To be honest, I was a bit annoyed to get a generic email in reply. This is a serious thing - you can't just send a generic response".

Helen contacted the NAS with her MP's reply and we gave her a special response letter we've written for Ambassadors and Champions to send when they're not satisfied with their MP's response to the Undiscovered Workforce campaign.

Now Helen's looking to the next steps in her campaigning: "I would like to meet my MP and put my case forward. This is a real issue, not only for people who are in the workplace now but also for those people with autism who will be working in the future. There are thousands of people in this situation, and the have the right to work like everybody else"

If you want to support the Undiscovered Workforce campaign you can send a letter to your MP through our website here: www.autism.org.uk/undiscoveredworkforce. If you've already sent an initial email and haven't received a reply or aren't satisfied with the response you have received, don't be afraid to politely challenge them on it. Or if your MP asks you how they can help, make sure you take them up on their offer. Get in touch us at aan@nas.org.uk and we'll give you advice on what to do next. 

There are loads of great things going on with the Undiscovered Workforce campaign around the country - we've had MPs writing to local businesses, organising breakfast events and pushing Local Authorities to set up supported employment services - don't let your area miss out!