In our bid to keep the ‘Awareness of Autism’ a very current thing that is always on the rise it is important for us to always be showing the bigger news items because THEY are what attracts attention.
If we achieve something, we let you know! If we come across something we don’t like such as an attitude within a service or professional setting then again we let you know. People want to see the BIG positive stories and also want to know when something needs our attention. Those stories and articles such as Anna winning an Award or Austin pointing out a failing that has been spotted catch peoples eye and as word is spread so awareness is raised.
When Anna, Sean or Austin are out speaking somewhere be it from Westminster to a front room in Wellingborough you can bet it is being done for a GOOD reason.
When all of our faithful followers and supporters like or share something we have written or said then the word is spread. This is a positive on two levels. The first being that some people outside of autism see these things and wonder what the fuss is about. As they look deeper into what is being talked about they slowly start to pick up and learn things. Right there is awareness in action. The second positive is that awareness is also spread and grown WITHIN the autistic community. Each week parents/families already touched by autism, who have been battling alone, suddenly discover by this spreading of the word that their ARE other families like theirs out there and they find a support network to welcome them in where they thought there was none.
So, people see all this and good things come of it. But, is that it? It is great work on its own but is that all the AKO team do? Well let me tell you……..NO!……….away from our events and that awareness raising there is a LOT going. The problem is we just don’t have enough time to talk about it and we don’t like to bang the drum about what we consider to be the job we should be doing…….no one walks into a class and writes a story or article on what Mrs Jones, Geography Teacher, has just done for the last hour. It is her job and she gets on with it. This is very much our ethos, However as pointed out by many, sometimes it IS important to stand up and be counted.
There are two MAJOR elements to the Anna Kennedy Online charity that unless you are being directly touched by them tend to be unseen. Some not realising that these things exist have even said ‘WOW…..I didn’t know!!’
With the AMAZING support that we have received from people such as ‘West Ham United’ we are able to offer our very own Helpline. This helpline is there for ALL to access and if you ask us to call you back it is FREE! we endeavour to answer all autism related questions and offer support via it. Sometimes it can just be a case of a parent/family wanting a question answering or even just looking for some comfort and reassurance at a tough time (we have ALL had them). Other times the service becomes more than this and the full weight of our Behavioural Support and Legal advice swings into action. As an example one call made at the begining of January from a mother desperate for help has now become a full working case where our Advocate and Behavioural Support Officer is working with her. Not only is he there to advise but he has been attending meetings and has now worked to push for a thorough diagnosis and statement for the child of this mother where everyone else, School/Doctor etc, had just ignored and abandoned her. That one call has now transformed that mother and child’s lives and right now a much brighter and positive future is now open to them. That is just ONE call of the many received not just weekly but daily. With a small team it is DIFFICULT for us to keep up and sometimes people have to leave a message but WE ALWAYS GET BACK TO THEM. There are set hours for the more general enquiries but our operative (through his own dedicated choice….the AKO way!) leaves the phone always in reach and has answered and advised people such as a mother who needed help 11pm one Sunday evening. Autism doesn’t stop for everyone at home so we try to ensure we don’t either.
The second main element is that of our ‘Training Services’. For over a year now AKO has been offering it’s own dedicated training packages. Again, we just don’t get to shout about these very often. Our sessions are targeted at, well, everyone!
Parents come to learn more and better understand the things that they see happening in front of them. Yes they already have a great deal of experience but it is amazing how a little more understanding of WHY certain things happen and how best to deal with them can make a big difference. Our trainer always jokes that he wants to put himself out of work becase if he can give a BETTER understanding of the very basics and mechanics within autism then less people would need to call for support and help around certain issues. This hasn’t quite worked out for our trainer because now after sessions he has people contact us…..but now to say ‘hey this just happened and rather than worry I knew what to do because I thought about what you have said, THANKS!’
The same applies to all professionals from teachers to social workers and ANYONE that comes into contact with someone on the Spectrum. Our training is very much about sharing information and changing the way people think about and perceive autism.
We know lots of people/groups are charging a lot for training but we don’t see the point in this as it restricts the people who can access and receive it so as a charity we try to subsidise this to a low price that EVERYONE can afford. We are looking to SPREAD the word an cover the costs not make money! Again such subsidisation is only possible thanks to the likes off ‘West Ham United’. Our trainer is a life long West Ham fan so he likes to publicise their support where ever he can!…….(he has even been found drawing formation plans for seating and handing out orange slices during the breaks! he sees himself as our very own Big Sam!)
So there you have it! a lot more going on than we maybe always let on…….oh and that is without mentioning …….conference talks……parent/support group visits……..school talks……..legal advice on SEN and social care……Autism Dance Day……..Autism’s Got Talent……
written by: Austin Hughes
(for any enquiries or further information email firstname.lastname@example.org. Our Helpline number is 07710 597457 mon-fri, 9:30am – 16:00 but often answered for emergencies at all other times)
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Act Now For Autism is a core group of people passionate about the future and well-being of children and adults with autism and associated conditions in the UK. Act Now For Autism are campaigning against aspects of the Welfare Reform Bill, specifically the WCA, Work Programme and the impact of the changeover to Universal Credit and PIP. We are ardently campaigning for advocacy to be offered to anyone who has to have a face-to-face assessment.
As a Co Founder of Act Now for Autism and Tesco Mum of the year, Anna Kennedy OBE handed a letter to The Prime Minister at No 10 Downing Street on 4th March 2013. Please see a copy link https://autismcampaigners.blogspot.co.uk/2013/03/ignored-and-ineligible.html?showComment=1362471139670
Please read his response:
Anna Challenges David Cameron.
Prior to the interview, Anna, who was recently awarded an OBE for her services to autism, turned to social networks to find out what issues parents of those with autism most wanted to quiz the Premier about. Within an hour she had received over a hundred suggested questions from concerned parents. The following is an edited transcript of Anna’s interview with David Cameron:
Anna: “I feel an awful lot of pressure from parents…We’ve formed a virtual [online] autism community. We are supporting each other and parents are very angry at this moment in time. What they are saying is: Why does accessing services for simple education and care have to be a constant battle? It’s bad enough getting a diagnosis. It seems like you are almost being penalised because you have a child with autism.
“Why is the system so difficult? The parents are so anxious, they feel vulnerable, they are worried about their children; they are worried about them becoming adults. It seems that fewer and fewer services are available for them.”
David Cameron: “Were most of the questions about the process of getting a statement?”
Tesco Mum of the Year Anna Kennedy.Anna: “…you’ve got local authorities that write these statements that are not worth the paper they are written on. It’s woolly word bingo. You’ve got things on there that they say they’d benefit from – well I’d benefit from winning the lottery!
“What I say to you is, these parents that don’t really know anything about the statementing process, they read these statements and they think I’m going to get speech and language therapy regularly, but as long as they get it once a year that’s regular. I have regular Christmas dinner. It needs to be specified; it needs to be quantified. I know that you’ve got the new care plan coming together and you’re saying that health, social services and education are going to be working together; I’ve seen no evidence of that, so what action are you going take?”
David Cameron: “You are absolutely right, I think the process of getting the statement of special education needs has been…very confrontational and also it hasn’t taken into account enough health needs and social needs and that’s what this new reform – it’s not in yet, we haven’t introduced it properly yet – should deliver. That when you’re getting your statement, rather like the Passport [to care] we were talking about, the person responsible for health and education…they’ll all be sitting there together so when you get the statement it should include everything. It’s not perfect because, in an ideal world, you’d probably have the statement done by someone completely different to the local authority because in the end the local authority is both the provider of the statement and the provider of the services. We can’t do that now, but I think this new process of having health and social care more involved will be better and I hope this new process is going to be more streamlined.
“And also we address something, which is more difficult, but nonetheless which needs to be said. I think part of the problem in Britain is that we have so many children who are specified as having special needs and actually what we need to do is focus on the ones that really do have a special need, that have a learning disability, and really making sure we help them. I think we’ve been too slack at saying some children who have got problems with reading, for example, have got a special need, whereas sometimes they just haven’t been taught properly. So I think the more you can focus on the most needy, the better you can do for those people.”
Anna: “I’ve spoken to parents where they’ve waited months and months for an appointment and the consultant paediatrician says this child’s got some autism traits. It’s like saying you’re a little bit pregnant. You either are or you’re not.
“You’ve got parents who are waiting and because they don’t have the passport with the diagnosis they are not getting the support they need. The children are stressed at home, their parents are stressed and their siblings are suffering. These parents need someone to sit down and say, this is what autism is.”
David Cameron: “That’s true, you’re the expert, but isn’t it difficult with autism because there is a spectrum. I’m always struck when I see parents with autistic children because if you’ve got a severe learning disabled child, you’ll often find those parents in one group saying we’ve got a special school, we’ve got to save this excellent school. With children with autism, you have some who want special schools for autistic children, some who want mainstream provision with help for autistic children. The spectrum is quite big. I don’t know whether you find this with your school, but that does make it more complicated.”
Anna: “You have got children who can cope in mainstream schools; then you’ve got children like my own two sons and it just wasn’t working for them. Angelo didn’t even get the chance, because they said they couldn’t even meet his needs, and that was when he was just starting school. I shouldn’t have had to re-mortgage my house; I shouldn’t have had to set up my own school. I’m glad I’ve done it because I’ve discovered strengths I didn’t even know that I had.”
David Cameron: “When you first had your children and you were looking at where to go to school, did you find you got a good explanation of what was on offer? I think this is a real problem.”
Anna: “No. I was told by Hillingdon the ball was in my court and it was up to me to find the right type of school. At first, I was told my kids were the only kids in Hillingdon that had autism, which made me feel really isolated.”
Prime Minister David Cameron.David Cameron: “We have changed the rules about this and this was based on my own experience. You’ve got to make sure that parents are properly told about what is available. The presumption should be choice. It should be the choice for the parent, looking at the evidence, looking at what’s available to make a choice about the child.
“There used to be the presumption heavily in favour of mainstream schools and that meant – interpreted by some local authorities – that they didn’t tell you about what was available. When Ivan was born they didn’t tell us about the school that he ended up at. They didn’t even tell us that it existed. We had to find out about it separately and that’s nuts.”
Anna: “The thing with autism is that there are so many different strategies – I think I counted about 17 of working with children with autism. Parents wonder, which one do I choose? What’s going to be the best one for my child?”
David Cameron: “Isn’t that inevitable because we haven’t got to the bottom yet of some of the causes and what the effects can be?”
Anna: “I think the thing is training – consistency in training. I think that is what a lot of mainstream schools are crying out for.”
David Cameron: “The Government is putting money into the National Autism Centres, so we are funding this research, but there are different approaches and I don’t think we can totally legislate for one while it’s still uncertain.”
Anna: “What are the Government’s priorities for children with autism? Parents need to hear something because they can’t see the light at the end of the tunnel.”
David Cameron: “Help the parents make the choices. The approach this Government is taking is much more trusting of the parents, saying you should have more choice in safe special schools, stop the closure programme which we did. And then to put more power in the hands of parents whether it’s through individual budgets and direct payments so you’re in command.
“We are changing the statementing process to make it more inclusive of the things other than education.”
Anna: “I think that for some parents that’s too much pressure because you have to deal with the diagnosis. To be honest with you, I don’t know how I’m not on the floor because I sleep three to four hours a night because of my son Angelo.”
David Cameron: “How old is he now?”
Anna: “He’s 20. I’ve had to set up everything myself, including a vocational college for 45 adults. I didn’t even go to university; I just about got ‘O’ Levels. It’s the passion for my boys and listening to other parents that drives me on.
“I’d like to ask one more question, if I may, for adults. The disability living allowance is going to be replaced by personal independent payment. What’s the Government going to be doing to ensure that adults with autism will not be at a disadvantage when being assessed for things such as ATOS, work capability assessment, disability living allowance? Again, parents of adults and adults themselves who are affected are very anxious.”
David Cameron: “I can understand the concern about it. Basically, disability living allowance has been a good benefit. It’s not means tested. It’s based on your disability, not your earnings, and it has worked for many people. I think the problem with disability living allowance is that – as you know, you’ve done it, I’ve done it – it’s an enormous form you fill out…
Anna: “You need a degree to fill it out…”
David Cameron: “…It isn’t really reviewed and assessed properly and it isn’t really based on a proper medical check. And so personal independence papers which we’ve put together listing very carefully to all the disability and medical organisations will be much more based on what your capabilities are and what your medical diagnosis is, and will be properly reviewed.
“Now this is not about cuts. The money – DLA and PIP – the money’s going up, not going down, but there will be proper assessments. Because sometimes people on DLA have just been left on it for year after year after year. So what I‘d say to people is, of course change makes people anxious but actually it’s better to have a system that properly assesses you and then reassesses you on your need rather than a very, very complicated form.
Anna: “I’d just like to give you a letter, if that’s alright, from 12,000 families of adults with autism; all they’re asking for is an independent autism advocate, that when they go through this process of ATOS, that there’s somebody there. Because some of these adults come across as more able than they are.”
David Cameron: “What it’s meant to be is checking out what you are capable of doing, which doesn’t necessarily link to your medical condition. There are people who have a physical disability but who are have incredibly fulfilling work lives because they’re able to do all sorts of things. So we should be looking at what people are capable of. I also think the whole issue with ATOS and work capability assessments, because someone is disabled or someone has stress or someone has other conditions, we shouldn’t write them off; we should be asking, what can you do? Because, actually, even if you can only work for a few hours a week or you’re only capable of some sorts of jobs, it’s much more fulfilling to be able to do something than actually to be written off that you can’t work.”
Anna: “I understand what you’re saying, but have a read.”
David Cameron: “But I will have a read of the letter.”
Anna: “Thank you.”
Anna Kennedy OBE