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.

Ralph on the SEARCH for employment

Ralph Hemus, campaigning for the National Autistic Society, recently hosted a superb radio feature on FromeFM “Our Vision, Our Future” to promote an exciting programme to help young people with learning disabilities find paid jobs in his local area.

Project SEARCH, operating through Bath and North East Somerset Council, combines classroom teaching with practical work experience within the council including schools and partner organisations.

It is a training program for special needs students who have completed their academic requirements but would benefit from a workforce development program that includes employability skills and internships in a local but large business.

Ralph recently gained the job of Admin Officer at the council after his year on Project SEARCH. On his radio show, he introduces teachers and job coaches to talk about the programme, including his own coach Pauline, who spoke of the importance of letting young people with learning disabilities know that “work can be a positive experience”. Ralph also discusses his own experience as an intern, describing the benefits of reduced anxiety and gaining a better idea of what he wants to do through taking part in supported placements. Ralph's show also includes interviews with his fellow students, including 19 year old Chloe, who like Ralph has successfully got a paid job. “I think Project SEARCH helped me out a lot by giving me confidence”, Chloe said of the project, adding that she had not travelled on her own until taking part in Project SEARCH, and that her favourite thing about her new job as a receptionist was the opportunity to meet people.

Gaining paid employment was the unanimous wish of the young people interviewed, and many also emphasised that they wanted to live independently. Described by one of its coaches as “a mixture of fun and hard work”, Project SEARCH aims to make this possible by incorporating job skills and personal independence training with internship experience in a variety of fields, including administrative and clerical work, catering, maintenance support, customer service, and care work with children or the elderly. In order to support the specific needs of young people on the programme, students can access their job instructions in the form of tick lists, prompt cards or photographs as their needs require, and the work experience is supplemented by practical skills coaching.

It was not only the young people who reported good experiences in their involvement with Project SEARCH. Ralph has also worked to promote Project SEARCH to local employers, interviewing employer participants across businesses and services who described the interns as assets to their workplace. Heather Thomas at Keynsham Health Centre encouraged other local and national businesses to offer placements, explaining how helpful the Health Centre’s intern had been at carrying out administrative tasks during a particularly busy time. The Deputy Headteacher at Castle Primary School also spoke warmly of watching interns “really grow in confidence” and emphasised that to employers like her, “the benefits far outweigh any organisation that has to be done”.

Ralph’s guests closed the feature by thanking him for his hard work promoting a scheme that has not only benefited him but has encouraged many other young people and employers. The feature identified ongoing challenges, such as the high rate of unemployment amongst young and especially young disabled people, the lack of infrastructure in some areas making it difficult for interns to get to work and the challenge of changing employer attitudes. Despite these challenges, Ralph and the interns and staff at Project SEARCH have demonstrated that given the right support, young people with autism and / or learning disabilities can truly thrive in employment, bringing great benefit both to themselves and to their communities.

To listen to Ralph’s fantastic radio show online, go to http://www.fromefm.co.uk/ and look for ‘Ralph’s Finest Hour – 2^nd June 2012.

For more information on the National Autistic Society’s Undiscovered Workforce campaign, follow this link.

Autism Summit in West Sussex discusses upcoming SEN reforms

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

SEN campaigning progress for Victoria

I'm Victoria and I joined the AAN in November last year.  I live in Hurstpierpoint, with my husband Ged and our 3 children, Joseph, Daisy and Archie.  Joseph is 7 and he has autism.  I've been asked by the AAN to say a bit about what I've been up to since November, it would be great to hear your experiences as well - it's inspiring to think there's a group of us out there working away for autism.

Since becoming an ambassador, I have been campaigning on the Government's proposed reform to the Special Educational Needs and Disability system - change is potentially good, but we need to make sure the Government gets it right for people whose lives are affected by autism.

At the end of last year, I finally got to meet my MP at his surgery.  I had been in contact with his office on the SEND reforms since the summer, but it took until December for us to meet.  My MP is a minister and it was initially hard to get his attention.  Tenacity proved to be the key, as did trying to forge some kind of relationship with his office (they got to know me quite well in the end!), although I admit, it was sometimes hard to balance persistance with politeness...!

 

Before the meeting I took some advice from the AAN and got myself prepared - I'd never met an MP before and I was nervous and keen to make sure I did a good job.  The best bit of advice I got was to write a short note which, would detail all the issues I wanted to raise and the points I wanted my MP to action after we had met.  I took this note with me and used it to refer back to and keep the meeting on track.  I also emailed a copy to my MP's secretary before the meeting, she printed it out and he was able to read in a little about the issues I wanted to discuss - it also gave him something to keep in hard copy to remember me by!  For moral support but also to add impact, I brought a very good friend of mine to the meeting.  Her family life is very similar to mine and together we were able to emphasise both the significance and prevalence of our common experience.

The meeting went well.  It seems to me that the Green Paper provides a great opportunity to improve the provision of services for local people affected by autism and it turns out that my MP has had lots of other constituents asking for his help and has become very sympathetic.  I told him about my experiences, how complicated life can be for Joseph and how we have struggled for diagnosis and to access services.  I also outlined the main Green Paper proposals and how the reforms could, in my opinion, best serve the interests of those affected by autism.  I was amazed by his interest and knowledge, we had a good chat about the problems we face and he listened well. At the end of our meeting, he agreed to coordinate a round table of parents and families, health care and education professionals, in the first of what we're hoping will be a series of 'autism summits', which will take place at Arundel Town Hall on Friday 29 June. 

The idea of the 'autism summit' is to bring together all kinds of people who have a connection with autism - mental health teams, social workers, teachers, Children's Services, people with autism, parents and charities - for round table discussion and information sharing.  We hope that as a result of these meetings, my MP will be able to feed back some really useful information to Government, as it progresses the Green Paper.  West Sussex is also a Green Paper Pathfinder area, so it's going to be a really useful forum to find out how the Pathfinder Team has got on.  We also hope that these sessions will help improve local services for those affected by autism, by highlighting what is being done and where gaps remain.  It will also be a chance for parents to share experiences.  The 'autism summit' will include 5 speakers - representatives from social services, mental health services, the charity Autism Sussex and members of the West Sussex County Council Pathfinder team.  I'll be there representing the families and the NAS and I think someone from the NAS will try to make it down.  There'll be a Q&A session after the speakers have finished and I'm hoping to see lots of people chipping in from our local NAS branch in Worthing.

After a difficult start, I've become really impressed with the commitment that my MP has shown to the issues I raised and, about a year after I first contacted his office, I feel like something might finally result.  I hope the summit is a success - I've never done anything like this before so if any of you have advice or ideas, they'd be very gratefully recieved!  Fingers crossed for 29 June.  I'll keep you posted."

Being involved locally

I have a fantastic brother Indi who is 17. We are at the cusp of transition and like many fellow parents, siblings and carers; it is a very confusing and challenging journey. Two key areas that the Autism Strategy looks into is improving access to the services and support people need to live independently within their community and enabling local partners to develop relevant services to meet identified needs and priorities in their local area.

So when I set out to find out what was happening in Croydon with regards to implementing the Autism Strategy, I was at a bit of a loss as to where to start. I began by approaching the local Learning Disability Team. This did not bear much to fruition, as they did not know anything about the Strategy and where the Council was with regards to implementing it. I tried calling various departments in the Borough to no avail.

Getting nowhere, I approached local forums to see if there was anything happening at a grassroots level that I had not been aware of. I approached the local Parents In Partnership Forum and got in touch with the Carer's Forum. The forums have been immensely helpful in getting an idea of what is going on within the local area in general, regarding, accessibility to services. I was able to actually network with people more in the know and feel supported. That feeling of being supported is crucial especially when you don't know if you are the only one trying. I was able to get details of the Learning Disability Partnership from a member within the forums and am now waiting to hear back from someone in the Council regarding exactly where they are.

I know this is a very long-winded way to go about it perhaps. However, given that I was not getting anywhere on my own, I preferred this route of joining up with local forums simply because there's always strength in numbers, especially if the end goal for all of us is a similar result, i.e., better access to services and lobbying for services not currently available for our young people.

Sam