Push for Action encourages Government to launch investigation into impact of Autism Act

When the Autism Act was passed, the Government committed to reviewing its impact in 2013. We launched our Push for Action campaign earlier this year to make sure we made the most of this opportunity. Thanks to your campaigning, the Government have now launched a comprehensive programme of action to look in detail at how well the Act is working.
 
It has been over four years since the Autism Act was passed to help improve the lives of adults with autism, but many are still waiting for the everyday support they need. It is really important that the Government learn more about what’s working and what isn’t, so they can help to speed up implementation of the Act.

The Government’s programme of action includes events, focus groups and workshops that will be run by the NAS and other organisations. Through the events, the Government want to hear the views of people with autism, their families and carers, as well as professionals working to implement the Act, and find out how you think it is working. You can see a full list of all events taking place around the country and details of how you can get involved here. 

Don’t forget, you can also take part in the Government’s review by doing this short online survey before 6 September or by contacting Jon Rouse, the new Head of Social Care at the Department of Health, at autism@dh.gsi.gov.uk or on Twitter @RouseJonDGDH.

New self assessment forms are a Push for Action victory

The release of the Department of Health’s new self assessment form – which monitors local authorities’ progress against the autism strategy – has seen a significant victory for The NAS' Push for Action campaign. There’s been a win for our Getting On? campaign on autism in older age, too.
 
We have been working with the Department of Health on drawing up the questions for the new self-assessment exercise and on ensuring the new framework uses clearly defined ratings. This is so we can clearly see the progress each local authority has made against the strategy and compare their progress. 

Previously, self-assessment forms made it difficult to compare local authorities’ progress and some local authorities did not fill in the form.
 
In a victory for the Push for Action campaign, the new self-assessment form includes clear scoring systems and the Minister of State for Care and Support, Norman Lamb, has written to all local authorities explaining that they must complete the form.
 
The self-assessment form also asks local authorities whether they are considering the needs of older people with autism. This is significant step for The NAS’ Getting On? campaign which is pushing for the needs of older people with autism to be considered and met. 

Pushing for Action at Hayle Carnival

On Saturday 3rd August  2013, we (Philip,15, and Thomas,14) took part in Hayle Carnival with our cousin Trells, 23, and our dad Andrew who is Trells’ full-time support worker. The Hayle Carnival takes place on the first Saturday of August and December every year.

Last year we also took part in the Summer Carnival with Trells. We walked the route in the style of the Olympic torch relay with Trells’ torch. In December we did the carnival with Trells’ sister Emilie, who is also Autistic. The week before the carnival our Dad asked us whether or not we would like to take part in the carnival with Trells and we agreed. Our focus this year was on the Push for Action campaign led by the National Autistic Society. We decided to make a costume that was pieces of a jigsaw puzzle, which is a symbol for autism. So we made the pieces with the help of our Grandad on the Thursday before the Carnival.

When we arrived at the carnival we got everyone ready in the costumes and then started to wait for the carnival to begin. As we were waiting children came up and pressed the Push for Action button on our costumes. The carnival began and we started to walk the 2.2 mile route through Hayle. While we were walking we handed out Push for Action balloons and badges to the people watching. As we were coming to the end we saw our family: Trells’ mum Marie, his Dad Chris, his sister Emilie and our Grandparents; which was a lovely way to finish the carnival.

We chose the Jigsaw in our costume design because it represents connectivity between people with and without autism. Our dad told us that as long as you respect Trells he will trust you. The fact that we are doing the carnival is important for 2 reasons:

1. It helps Trells interact and socialise with people that he normally would not come in contact with, this is important for Trells because If everyone’s brain is like a telephone exchange, then an Autistic mind cannot make all the connections that a non-autistic one can, and we are helping Trells make these connections.

2. We were happy to do the Push for Action campaign because it would make the Autism act more important.

How the old ways can be the best: back to basics in Cumbria

Here in Cumbria we’re really proud of the number of people who’ve signed our petition for more action on the adult autism strategy. We have 388 signatures in total so far and people keep asking us how we’ve encouraged so many people to sign up.

1. Is it that provision for adults with autism in Cumbria is so much worse than everywhere else? Yes and no. Services in Cumbria are seriously lacking, and we really do want to encourage the local authority to do more. However this isn’t unique to Cumbria. As NAS research shows some 70% of adults with autism aren’t getting the support they need from their council.
2. Do people in Cumbria just care more? No. We have some great volunteers in the Furness branch and other passionate campaigners across the county, but committed campaigners have been trying to get people to sign up to Push for Action everywhere, not just in Cumbria.
3. Are supporters all connected and working together? Not necessarily. At the NAS branch in Furness we have an amazing committee who organise lots of activities but there certainly aren’t 388 of them! In fact, one of the reasons the local authority says adults with autism in Cumbria don’t have all the support they need is that the county is so spread out and disjointed.
4. Are there more adults with autism in the Furness branch of the NAS? Actually, many of the people signing the petition are parents of children, but we all recognise that one day our children will be adults, and we want to make sure the best support is available for them when they grow up.

So how did we do it? We went back to the basics of old fashioned campaigning. Remember those days before online sign-ups when you would sign up to a list in the city centre or at a community event? Well, our committee member Jane McFie suggested that every time the Furness branch of the NAS runs activities or attends events we should take a paper copy of the petition with us and ask people to sign up. We’ve been inputting these names into the online tool ourselves. This means it’s much easier for people who don’t have access to the internet or haven’t come across the link online to get involved. We’ve been taking the petition to them rather than expecting them to come to the NAS site.

If you want to speed up the sign-up rate in your area why not give it a go? Contact campaign@nas.org.uk for your own copy of the paper petition and advice on collecting signatures.

Jackie Bell, National Autistic Society Furness Branch Officer

Surrey service users ‘Push for Action’ in Godalming

As the Policy and Participation Officer for the South East area, I have been working with the NAS Horizons service in Godalming for 7 months now. My mission was to introduce the joy of campaigning to the service users there; to help them realise what changes campaigning can achieve, not only within their local community but also within themselves.

After thinking about how autism affects their lives, the group decided they wanted to campaign to raise awareness of autism in general, and to increase the knowledge and understanding of autism amongst local people. The ultimate aim was to change the way people think about autism, to help them understand it, and to change people’s behaviour towards those who are on the autism spectrum.

The group soon decided to add their voices to the national Push for Action campaign and it proved a good way of raising awareness of autism more generally. Staff and service users had prepared for our ‘Push for Action’ campaign day by hanging up posters and information around the Horizons day service, and when I arrived, they were ready to get stuck into a whole host of activities.

We started the day with cake! We decorated cakes of all shapes and sizes with the Push for Action red button and slogan, and some service users decided to use the opportunity to create their own messages about autism in icing. Much restraint was shown during and hardly any cakes got eaten along the way. We then turned our attentions to blowing up Push for Action balloons and attaching them to sticks so we could hand them out to children and anyone else who might want one. One of our group, Rich, was pleased we had something to give out to people which would continue to raise awareness of the campaign even after they’d stopped to talk to us.

Members of the group had made their own autism awareness posters and Push for Action posters several weeks earlier, and the staff at Horizons went above and beyond their responsibilities to ensure everyone’s posters were professionally printed up. Armed with these and Push for Action information leaflets the service users visited shops up and down Godalming High Street, asking shopkeepers to support the campaign by putting up the posters in their shop windows. Hardly anyone turned them down, and when they did it was only because of company policies. Many shopkeepers wanted to know more and gave alternative options of leaving the Push for Action leaflets on the shop’s information stands. This overwhelmingly positive response from local businesses was undoubtedly down to the hard work and dedication the group had put into making their posters and because they took the time to explain what autism meant to them, and how it affected their everyday lives.

During some of the first campaign meetings I ran with the group at Horizons, several members told me about the discrimination they’d experienced because of their autism. Many found it hard at first, to talk to me, and in front of others, about the difficulties they’d faced, and it also took time for them to get to know me enough to share those experiences with me.

When someone is on the autism spectrum, it can take a little longer to build relationships and trust, and it also takes me time to learn the various ways different people on the spectrum prefer to communicate, and to get it right on my part. I cannot express therefore, how proud and privileged I felt to see these same group of people donning NAS t-shirts, identifying themselves as people with autism to absolute strangers, and talking to people they had never met before about how autism affects their lives. People with autism are best placed to deliver the core message of this campaign, which is that we need better support and services for adults with autism, and we need it now! The Horizons campaign group delivered that message loud and clear. They are the reason that the Push for Action campaign is essential, and why we have to keep telling the government to get the Review of the Adult Autism Strategy right.

As for me, I won’t be leaving it long until my next visit to Horizons for our next get together; we have plenty more awareness raising to do!

Anna Nicholson

August's action: put autism on the NHS agenda

Push for Action is gathering momentum across England – over 7,500 supporters have already signed their local petition – so we’re launching the next campaign assignment as we build towards the Government review.

This month, we’re asking supporters to contact the chair of a new health body in your area called a Health and Wellbeing Board. These boards will have a crucial role in deciding what areas of health and social care should be prioritised, and checking if your council and the NHS are being transparent about the support they’re providing adults with autism.

Find out more and take part
These boards will examine the self assessment that tells us how well your council has been performing under the autism strategy.  You can take a look at your council’s current assessment by joining our campaign at www.autism.org.uk/push.

Councils are now being asked to complete a new self assessment, which will be discussed by your health and Wellbeing board by the end of January 2014.

One of our Push for Action recommendations was for the Government to carry out another self-assessment exercise which all councils completed and to ensure there are clear ratings so we can accurately judge and compare performances across different councils.  We’re pleased to announce that a new framework with clearly defined ratings has been introduced, but we’ll still need supporters to tell us if they do reflect the reality from the ground when the results are released next year.

Tom's campaign blog #4: "No-one cares and they never will"

We always love hearing from you, whatever you’ve got to say. And the overwhelming majority of what you’ve told us about Push For Action so far has been incredibly positive, which makes us especially happy.

But, of course, we get less positive feedback too. Sometimes people are angry with us – frustrated that we haven’t been able to do more where they live. Occasionally people feel like we’ve not represented their views as well as we could have. And often, people are feel tired and frustrated with campaigning, and simply seem to be asking us: “What’s the point?”

The below is a message sent to me a couple of months ago in response to a request to support the Push for Action campaign:

“I would but it won’t work so I won’t do it. Honestly, I would push that big red button 20 million times if I believed this could really happen. No-one’s going to fund it, no-ones going to listen. We’ve been trying to get people to listen [where I live] for 3 years. Nothing changes no matter how flash you make your website look or how many people you convince to press your red button. Sorry.”

And here’s an extract from another more recent letter on a similar theme:

“As we both know, the Autism Act is a pointless piece of paper and quite why the NAS celebrated when it came into law I will never know. The act has no claws, there is no penalty for a local authority who does not or is unwilling to set up services for Autistic adults.

There is no preventative action and I doubt there ever will be. Clearly they would rather risk the costs of sectioning someone rather than help them. So I despair when you ask me to push for action, because there is very little point, they will not listen to me and they cannot be made to anything.”

I suspect these correspondents speak for many of you. Scratch that – I know they do, because we talk to lots of you who feel the same: you feel like you’ve been screaming into the abyss for weeks, months, years – and you don’t want to fight any more.

So in an attempt to answer to more of you than just those who have taken the trouble to write in, here is an extract from my response to the second writer I have quoted for those of you who are perhaps feeling disillusioned. I know we'll never convince everyone to get involved, but I want to make it clear to you why we ask you to to begin with.

“Thank you for getting in touch with your thoughts, I appreciate it. I disagree with a few of your points but I also entirely understand and share your frustration.

I disagree with your point that the Autism Act is pointless. It isn't perfect, but it does – for the first time – set out in law that someone, both within the Department of Health and at each local level, has to take responsibility for improving the lot of adults with autism. That might not seem like much, but because of that and the other duties set out in the statutory guidance that came out of the Act, we are genuinely beginning to see some very good progress in parts of the country – and levels of progress that we certainly would not have seen without the Autism Act.

But – and this is a significant 'but' – we haven't seen nearly enough of that progress. Too many local authority areas have been able to get away with doing very little or almost nothing at all. Most of those who are making steps forward are doing so too slowly and too patchily. Times are tough financially, but that's no reason not to ensure they are meeting the needs of a significant chunk of their local populations, particularly as there is now statutory guidance telling them to do so.

There is currently far too little preventative action out there, I absolutely agree. But I hope and sincerely believe that the Autism Act – backed by the Push for Action campaign and our army of campaigners – will change that. I am a professional campaigner, and I do this job because I know that it works. When people come together round a common issue, have a legitimate complaint and a clear pragmatic solution to resolve it, and make enough 'noise' in the right way, it really can and does get results. It's rarely easy or quick – and of course it won't always work. But I'll tell you this: the areas where we've seen real progress are almost always the areas where there's a strong campaigning presence. And that's no coincidence.

It is absolutely your choice as to whether or not you want to get involved, and as much as I'd love to have your support I am not going to implore you to do something you don't want to do. But I do firmly believe that the autism community working together is the only way of achieving real, lasting change across the country. That's why we launched Push for Action – to give people something to get behind, to work together on, to push for change in their communities.”

Tom Madders.
Head of Campaigns

www.autism.org.uk/push

Campaign win on autism data collection!

Push for Action calls for the implementation of the adult autism strategy across the country.

The aim of the strategy is to improve services and support for adults with autism to make sure they can live full and prosperous lives. This is why Push for Action recommended changes to the way data is collected  at a local level. Thanks to the campaign and to your fantastic support for the campaign these changes have now been introduced.  

The autism strategy recognises that in order to do this local areas need better information and data on adults with autism in their area. If local areas know how many people with autism live in their area and what their needs are this will help them to better plan for improved support.

The changes mean that data will now be gathered, not only on why people are receiving services, but also on any conditions that people report. The conditions that local authorities must collect data on include two new categories, one on autism and one on Asperger syndrome or high functioning autism. All local authorities will now have to collect this data and report their findings in 2014/15. In order for local authorities to prepare for the change, it has been recommended that local authorities begin to put processes in place to do this now. 


We believe that this is a big step forward for local areas in ensuring they understand the needs of their local population of adults with autism.