Pushing in partnership with Autism Bedfordshire

I’m Mike Osborne, Adult Services Manager with Autism Bedfordshire. The charity started over 20 years ago when a group of parents of children with ASC got together to support each other. Over the years we have grown to the charity we are today, offering services to the residents of Bedfordshire.

The Children’s and Young People’s services offer over 400 places in term time groups, summer schemes and teen age groups across the county and are well respected and relied upon by the families and individuals we work with.

The Adult Services really started to develop just over two years ago when the Autism Act and strategies were in their infancy. We were invited to join the local strategy groups and became actively involved in enabling the authorities in Bedfordshire to work together, join forces and become leaders and innovators in the development of adult services.

Strategies agreed and in place, we created the Autism Partnership Board, aiming to put the strategies into action.

Chaired by two of our services users, this popular and influential meeting involves professionals, commissioners, managers, service users, their families and carers and anyone else interested, to meet and influence the development of services across the county.

Whilst not yet perfect nor all inclusive, we now offer social groups and activities across the county, skills and employment focussed work in the three authorities, education programmes (for up to 6 per group), personal support and a Helpline service offering advice and assistance by phone, email, drop in visits and social media.

We have also been involved in delivering a widely acclaimed programme of Autism Awareness training. In 2012 over 600 professionals attended and the feedback was excellent. The courses, presented by a Speech and Language Therapist and adults on the spectrum has been commissioned by the local authorities and the NHS, and a programme for 2013 is currently underway.

Training has also been given to prison officers within the local prison, GP surgeries and GP symposiums, Fire and Rescue Services, Police trainers, Social Work Teams, schools and colleges, residential services and accommodation providers. Whilst still having a long way to go, noticeable improvements for adults with ASC have been noted already.

The next stage is the development of a diagnostic service within the county. This is expected to be up and running very soon and will provide adults in Bedfordshire a diagnostic and treatment service and long term care coordination.

All of the above would not have been possible without close cooperation and partnership work between the local authorities, the NHS and the voluntary sector. Having all of us around the table not only enabled the development of realistic and achievable strategies, but allowed agencies to work together in the creation and delivery of these services.

Mike Osborne
Autism Bedfordshire

Cheshire West and Chester push for action

We've been working with the Cheshire West and Chester branch to improve services for people with autism in the area for years now. A survey the group carried out in 1993 led to the development of a new local residential service, Dover Drive, so we knew that working together it was possible to bring change to the area.

Last summer the branch carried out another survey to find out more about the experiences of adults with autism and their families in Cheshire West and Chester. The survey produced some quite difficult results and as a culmination of our campaigning, members of the branch met with Alistair Jeffs, the Head of Strategic Commissioning, and Jill Broomhall, Head of Prevention and Wellbeing to discuss their experiences on Wednesday 15th May.

Branch members raised some important issues such as poor transition planning in the area, not enough social workers, few services for people with Asperger syndrome or high-functioning autism, and a lack of suitable services for those with personal budgets. As a result, the council officers promised to feed back comments from that evening to their teams, and said that they were looking into a number of structural changes to the way the council is organised, including appointing a lead commissioner for autism, increasing the number of people in social work teams, and developing a possible family liaison officer role to help those going through transition and to act as a point of information for people who aren't eligible for social care.

We were really pleased to hear the council listening and reacting to the experiences of people with autism and their families. So, we've agreed to wait for six months before holding a similar consultation event again, when we hope branch members and their loved ones will have experienced a change in the services they receive.

Find out here how many people are currenly pushing for action in Cheshire West and Chester.

If you are interested in local campaigning and would like support and advice, contact campaign@nas.org.uk to find out how we can help.

Tom’s campaign blog week 2: Relationships

This Wednesday evening I had the pleasure of visiting the AGM of our NAS branch in Hertfordshire to talk to them about the Push for Action campaign. The AGM also marked the end of an era, as Laurence Griffin, the long-serving Branch Officer, and his wife Ann were stepping down from their formal roles at the branch.

We spent some time at the meeting reflecting on what they have achieved in their time in charge of the branch, and quite simply it has been remarkable. As well as their numerous other achievements, their campaigning – working alongside the council – over the past eight years has led to incredible changes that will lead to real differences in the support people with autism and their families receive locally.

To name but two (of many) breakthroughs, Hertfordshire County Council (HCC) have recently announced a new specialist Asperger’s team for adults in the area. And at the end of the year, the Council have agreed to thoroughly scrutinising their provision for people with autism in the area. These steps both represent excellent progress and are a credit to the council as well as the branch.

And the key to these breakthroughs? Relationships.

Laurence, Ann and many others at the branch spent years building strong, positive relationships with the relevant people at the council and with numerous other partners. They have no doubt been helped by having some committed, proactive professionals within HCC to work with. But by remaining solution-focused, pragmatic, rational, polite, patient and – yes – persistent, they became people who the council wanted to engage with. They didn’t need to shout to get listened to, because the decision-makers wanted their valuable input. And they had built the partnerships to ensure that people across the county were working together towards a common end.

From the outside, ‘campaigning’ is often viewed as aggressive and intrusive – placards and loudspeakers, pitchforks and torches. And yes, sometimes ‘noise’ works and can be effective when the circumstances demand it. But Laurence, Ann and the rest of the branch should be proud to role-models for the quieter, less ‘showy’ but ultimately more effective brand of campaigning. The results speak for themselves.

If you’d like someone from The NAS to come and speak to you about Push for Action and how you can get involved, please email campaign@nas.org.uk. Our local authority guide should also be helpful to those of you wanting to take further action locally.

Tom Madders,
Head of Campaigns

Pushing in the Lords

Some of The NAS’s friends in the House of Lords have been raising Push for Action issues in Parliament this week.

Yesterday, the new Care Bill was debated in Parliament and Baroness Browning - one of our Vice Presidents - used the opportunity to explain that many people with autism remain unidentified by local authorities and are still not receiving the services they need. She asked the Minister for assurance that the new Care Bill would “ensure that the duties in the Autism Act statutory guidance continue to apply to local authorities and local NHS bodies to ensure the ongoing implementation of that Act.”

The Minister responsible, Earl Howe, responded, saying: “The autism strategy and its statutory guidance mark a great step forward for adults with autism in England... As local areas gain a better understanding of autism needs locally and develop autism commissioning plans we expect local authorities to look more at the cost benefits of more low-level and preventive services such as befriending services or social skills training.”

On Monday, Lord Touhig also secured time in Parliament to ask ‘Her Majesty’s Government what assessment they have made of the findings of the campaign by the National Autistic Society, Push for Action, launched on 14 May.’

You can watch live here on 17 June at 2.30pm to see how the Minister responds.

Video: What we're calling for

Debbie and Tom explain what Push for Action is calling on the Government to do, so that adults with autism get the everyday support they need, whether this be help with laundry, cooking a meal or finding a job.



Turn these recommendations into reality by joining the campaign at www.autism.org.uk/push. 

Tom’s campaign blog week 1: the end is the start

“This is not the end. This is the start.”

I had to remind myself of this on Tuesday. So much energy, anxiety and hype comes with a campaign launch that from the inside, sometimes it feels more like we’ve already built to the climax – the grand finale. But of course it is only the beginning.

And what a beginning it has been. So many exciting and impactful things have happened already, I need far more than a mere blog-post to fill you in. For now, I’ll try to pick three highlights.

1. Cupcakes in parliament

Holding events in parliament can be a nerve-wracking experience. Will any MPs show up? Will they be convinced by our message? Will they get behind us? But this time, nerves were minimal. We just had a feeling we’d got this one right. And we were proved right, with a whopping 60 MPs showing up to find out what was going on in their area, speak to our ambassadors, eat our delicious cupcakes (thank you Lola’s!) and commit to taking important actions to help people with autism in their constituency. Not a bad start at all.

2. Cumbria takes the lead!

The success of this campaign is so dependent on our campaigners spreading the word locally. We’ve gathered the support of local charities as partners in the campaign (more on these in a future blog) who are already helping get the word out there. But special mention this week needs to go to the NAS Furness Branch, who at this moment in time are just a few shy of getting Cumbria up to 100 sign-ups! If all our branches and local partners manage the same, we’re in for some campaign.

3. Our infographic debut

It’s been a great week for social media with tweets from celebrities Stephen Fry and Francis Boulle, hundreds of people watching our campaign videos and loads of you commenting on the Facebook wall on the website.

But perhaps best of all has been the campaign infographic – which we love – and which has already been shared by over 750 people. This social sharing is so important in spreading the word, so if you haven’t already please follow this link and share it with your friends and followers.

Thanks so much to everyone who has already done anything to support the campaign. It’s a long road ahead, but the momentum is already building thanks to you.

Keep on pushing!

Tom
Head of Campaigns

Machita's launch week

Hello, my name is Machita Denny, mum of adult sons who both have Asperger's. I am an Ambassador for The National Autistic Society and was very proud to be able to attend the Push for Action campaign launch on Tuesday 14 May.

I have been involved in the planning and development of the campaign which was very interesting and enabled me to gain a good insight into how much time and dedication The NAS put into their work on our behalf. I was then invited to be one of the faces of the campaign which is a huge honour. The photo shoot was fun and again another fascinating experience.

I was delighted to have been part of the campaign launch event in parliament and along with other ambassadors was able to meet with and speak to many MPs. I was very pleased with how many MPs attended the launch and if some were unable to attend a member of staff from their office came along to talk and gather information to take back. This event was a very important opportunity to tell it like it is and get the messages across that adult services are woefully lacking and the impact this has on the autism community. It was also important to portray that there are pockets of good practice across the country that bring huge benefits. I like to share what can be done as it hopefully encourages those who may feel daunted by the prospects of getting started that it can be achieved, and how.

The MPs I spoke with were very interested and had some experience of autism. However, some were not aware of the real impact on people who have autism and their families that the lack of adult services really had. I hope that I was able to impose on them that what we are asking for is not a Christmas wish list but is desperately needed and often a matter of survival. This was all backed up by the Autism Act which should not be ignored.

This campaign is very important to me. I have battled and fought (as I am sure most of you who are reading this will also have done) as my children have grown up to try and secure some form of support for them and our family. Now they are adults I have had to start all over again. I hope that Push For Action will really get things moving and we will all see a significant improvement in the adult world. I am not expecting a huge rush but maybe the fact that the government are asking for evidence of movement this year will be the prompt that local authorities and health providers need to get a shift on. We can but hope!

Overall it was a great experience and if you have the chance to get involved, please do. The NAS are very supportive and welcoming and your voice really does make a difference.

Machita

Push for Action launches in parliament

On Tuesday 14 May, we launched our new Push for Action campaign in Parliament. More than 60 MPs came to find out what we are calling for and offer their support. 

With the help of our wonderful ambassadors, Daniel, Machita, Marco, Sam and Indi, we spoke to each MPs about some of the challenges facing their constituents with autism and their families. We told MPs about The NAS' new research, showing that despite much progress across the country, 70% of adults with autism are still not getting the support they need. Many MPs remember the groundbreaking Autism Act 2009 and want to help us realise its aim to improve the lives of adults affected by the disability. 

MPs were particularly impressed by the campaign website and were interested to check out how much progress their local authority has made (see picture), and how it compares to neighbouring councils. We showed them how their constituents could comment on the website too, so they could share their views and experiences of local services, helping to hold the local authority to account. 

Support from MPs can be vital if we are to achieve real change at local and national level. They can help persuade the council to take action on improving local support and put pressure on the Government by raising autism during parliamentary debates or in parliamentary questions. 

To send a message to your MP about what support for adults is like in your area, sign up to the campaign and leave a message in the box.

Replay our live web chat about the Push for Action campaign

Today, Tom and Ayla from the team took questions from our supporters on the Push for Action campaign in a live web chat.

In a lively and wide-ranging discussion we discussed campaigning issues like how to engage disinterested politicians and how best to campaign if your council claims to have done it all already. We also unpicked how the campaign could help progress issues like training, transition and housing.

But the common theme was simply the widespread frustration at a lack of support for adults.

Re-read it now and see what you think. If you've got any questions you'd like to ask you can leave them in the comments section, below.

Video: What is Push for Action?

At our campaign photo-shoot, our Push for Action campaign ambassadors explain what the campaign is all about and how you can get involved.

Have a look and see what you think. Remember, You can sign up to support the campaign at www.autism.org.uk/push to push for your local council to take the action it is supposed to.

Oh, and we must apologise for the camera flashes and noisy background - these photo-shoots make for hectic environments!

Chris' story

I caught up with Chris at the photoshoot for the campaign and asked him why he’s fighting to end the wait for support for adults with autism in Kensington.

I tell Chris he often appears meditative. He explains that he learnt to be like this to defend himself against the anxiety caused by his autism and people’s ignorance of it. “When I couldn’t get a diagnosis because doctors thought all my problems were purely psychological, I wanted to kill myself.
 

”Too many GPs, psychiatrists and other doctors still don’t know enough about autism. I only got a diagnosis by going private, and if it hadn’t been for my friends I wouldn’t be here today.”   
 
I ask Chris if he remembers the Autism Act being passed in 2009.
 
He thinks for a moment and says it was the same year his book was published.  It’s clear he’s a born writer as I listen to him describe his autism and the impact of a lack of support.
 
“Many of us on the spectrum experience the world with such deep aching. Seeing, feeling, touching, tasting the world with such intensity and longing, but at the same time this world seems for the most part beyond our reach.  
 
Since my diagnosis I’ve tried to get post-diagnostic support but they told me nothing was available,” he says quietly, getting up for more photos.

How can we end the wait for everyday support?

Four years ago, our campaigners worked together to secure a historic moment for people with autism and their families – the passing of the Autism Act. The Act aimed to put adults with autism on the agenda in all local areas, and remove the barriers that were preventing those adults from getting support, whether that is help with washing and dressing, finding work or even getting a diagnosis.

Before the Act, too many areas were ignoring the issue, but now we’re beginning to see progress. For instance, nearly every council has a person responsible for making sure they are following their new legal duties and around half of Local authorities now have a diagnostic pathway - a route for adults with autism to get a formal diagnosis.  But we know that progress across is slow and patchy, and too many adults with autism are still waiting for the everyday support they need.

This year, the Government is conducting a review to see if the intention of the Autism Act is being realised. This provides us with two huge opportunities.

Firstly, we can tell the Government how they can do more to ensure the support adults with autism need is available wherever you live in the England. We’ll be calling for more funding for autism services, closer monitoring or what local areas are doing and clearer guidance about what needs to happen.

Secondly, we have a huge opportunity to change the support that is available to adults with autism where you live. With a renewed focus on the Autism Act, it’s our best chance yet to make our voices heard loud and clear: “our wait for support must end!”

How you can Push for Action
 
1) Join the campaign today.  By signing up here.  You can join your local community in pushing for better support for adults with autism where you live. You will find information about how your own council is performing, as well as how many others have joined your local campaign. You will receive regular updates about what you can do to support the campaign in your area. You can also add your voice to theirs and share your own experiences on our wall.

2) Get your community involved.  We’re stronger when we act together, so once you’ve signed up, see how many of your friends, family and colleagues you can get to join your campaign. You will also find a wealth of resources from posters and reports to balloons and badges here, which can help you to get your message heard where you live.