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