Mum of the Year Anna Kennedy challenges PM David Cameron

 

Mum of the YearAwards 2013

Conversation with the Prime Minister - transcript signed off by Downing Street

Anna Kennedy

Anna: I feel an awful lot of pressure from parents and the reason being, Facebook has been fantastic for us parents. We’ve formed this almost virtual autism community and we are supporting each other and parents are very angry at this moment in time. I speak from grass roots level. I asked what I should ask, within an hour there were 100 questions.

I feel this enormous burden that I have to do it for them. 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 less and less services are there for them.

Cameron: Were most of the questions about the process of getting a statement?

Anna: Statement of special educational needs, 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 say they’d benefit from, well I’d benefit from winning the lottery!

Anna: 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 actions are you going take.

Cameron: You are absolutely right, I think the process of getting the statement of special education needs have been much and it’s been very confrontational and also it hasn’t taken into account enough health need 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 streamline.

Cameron: 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.

Anna: 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, their siblings are suffering. These parents need someone o sit down and say, this is what autism is.

Cameron: That’s true, you’re the expert, but isn’t it difficult with autism because there is a spectrum. I’m always struck because when I see parents with autistic children because if you’ve got a sever 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, if 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 we can’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.

Cameron: Did you find that 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.

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 feel, which one do I choose? What’s going to be the best one for my child?

Cameron: Isn’t that inevitable because we haven’t got to the bottom yet of some of the cause 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.

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.

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 other 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.

Cameron: How old is he now?

Anna: He’s 20. I’ve had to set up everything, 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.

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) you need a degree to fill it out. and actually 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, 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- they’ve got their DLA, and they’ve 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 who 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.

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 job, 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.

Cameron: But I will have a read of the letter.

Anna: Thank you.

*Photo Copyright Tesco 

I Would Walk 500 Miles.

Co-Founder and Act Now For Autism Campaign Manager Carole Rutherford was invited to attend the All Party Parliamentary Group for Autism, chaired by Robert Buckland MP today at the Houses of Parliament.

Carole was invited to talk about her own personal experiences and as she works very hard in the Sunderland autism community with her support group Autism-In-Mind as well as the Act Now For Autism campaign, she took the opportunity to raise the issues we're campaigning about. Issues affecting her own sons as well as the many families and autistic adults she supports in Sunderland and across England.

Carole gave Norman Lamb (Minister for State and Care Services) a dossier of the work central to our campaign. This included our recent survey of autistic adults about advocacy, the letter Anna Kennedy gave to the Prime Minister last week and the piece written for us by one of our co-ordinators who has experienced struggles in employment. 

Sadly the minister was due to attend for only 30 minutes (he was there for nearly an hour) so Carole was only given 5 minutes speaking time: 

"I would walk 500 miles:

By the time I arrive home tonight I will have traveled 500 miles, 500 miles to have 5 minutes of the Minister’s time, for which I am most grateful. 500 miles is quite a distance to travel for 5 minutes of your time. These are the actions of desperate woman.

I am Carole Rutherford and I have two sons with ASC. My eldest son David, who is 25 years old, has a diagnosis of Asperger's Syndrome (AS). My youngest son Matthew is 15 and has a diagnosis of High Functioning Autism (HFA)

David has been without services from being signed off from Children’s Services when he was 17. This was despite David suffering two breakdowns during his teen years.

Ignored and ineligible

David's diagnosis of AS has totally prevented him from accessing any services or support.

Services Do Not Exist

The truth is that the low level preventative services which my son desperately needs to access simply do not exist.

Despite my sitting on my LA local autism working group/autism partnership board, and despite there being much talk about autism since the group was set up, nothing has changed for adults with

AS/HFA where I live.

Since being without services from the age of 17 David has developed a serious sleeping disorder. He also developed OCD which impacts greatly on his life.

I tried unsuccessfully to access mental health services for David for over two years. Because David does not have a learning disability we could not access a mental health team who had any knowledge or understanding of autism. Although the adult mental health services team were willing to see David, they did not feel that they were equipped to deal with his complex needs.

A little bit of knowledge is a dangerous thing

We need specifically trained professionals right across the services, especially within mental health, to support and advocate for adults with autism. Low level preventative services can work and that can be evidenced.

Scrutiny

We need a mechanism, other than the self assessment tool, to give us reliable information about the implementation of the strategy. LA's are ticking boxes that are totally empty. How can you be green for the training of front line professionals when no training has ever been delivered?

Advocacy

The need for autism specific advocates is increasing daily because of the benefit assessment and reassessments that adults are having. This will increase again when PIP is rolled out next month.

Advocacy for adults with autism is a specialised form of advocacy: I advocate for adults who are seeking employment through the Work Choice Programme, where their complex communication needs are not understood and are therefore not taken into account.

The failure of the provider to communicate effectively with two adults led to them having to seek help for their own levels of anxiety and mental health issues. My support group was contacted by a health care provider to see if we could offer any support/advocacy for the adults, which we did. The waiting list to access support via MIND is 5 months long.

Employment

There is very little support available for adults with AS/HFA, to help the adults to seek or maintain employment. What support there is, is often supplied by professionals with very little understanding of autism.

My own son who has HFA does not meet the criteria to have a personalised transition. In fact he has so far seen no one who has looked at his options.

Schools do not always inform Connexions that the young person has a form of autism, thus meaning that they receive no additional support at all during transition.

My local autism working group organised an event aimed at raising the profile of autism in the work place. The event was supported by the Mayor who also sent out invitations to employers in and around Sunderland - the event had to be cancelled because not one employer wanted to attend.

We need much more awareness in the work place so that employers can understand the many benefits that can be had for them by employing someone with autism.

Young people with AS and HFA would be more able to seek and maintain employment if they were taught the skills they are going to require to seek and maintain employment. They require social skills and effective communication skills. They need an environment in which to practice those skills.

I have only been given 5 minutes and I'm aware I'm probably well over so I'll stop there. Thank you."

Ignored and Ineligible.

Anna Kennedy OBE is a founder member of Act Now For Autism and has been awarded Tesco Achieving Mum Of The Year 2013. Celebrities gathered at London’s Savoy Hotel to pay tribute to the nation’s best inspiring mums, to be shown on Channel 5 on Mothers’ Day. (You can watch Anna talk more about her work and this award here.)

Anna went to No 10 Downing Street today as part of the Mum of the Year celebrations and put a letter from us directly into his hand, whilst challenging him: "Why does accessing services and suitable education and care have to be a constant battle for parents? What are the Governments priorities for autism? I then went to explain that when I knew I was coming to visit him I posted on my facebook page 'what would you ask the Prime Minister' and shared that within a couple of hours a 100 questions appeared. I said parents are anxious, worried , angry and some cannot see light at the end of the tunnel. Why are our children being penalised for having a diagnosis of autism? It would seem that local authorities are saying how can we make their lives more difficult?"

Here is our letter to David Cameron; this is part of our ongoing campaign for autism-specific advocacy to be offered at the first point of contact by the DWP for ESA and PIP applications and assessments/reassessments: 

Ignored, ineligible and unable to communicate effectively.

People with Asperger’ syndrome and High Functioning Autism (HFA) are amongst the most vulnerable and socially excluded in our society. Despite the Autism Act 2009 and the Adult’s Autism Strategy ‘Fulfilling and Rewarding Lives’ the majority adults with autism remain excluded from the care and work system. These adults are either ignored or ineligible and unable to access services, which often do not even exist, to support them and meet their
need.

They are also being discriminated against with many losing their benefits because they are unable to communicate effectively during benefit assessments and reassessments.

In 2001 the NAS reported that only 15% of adults had access to any sort of advocacy to help them express their own views about their choice of care, housing and activities.

In 2013 the need for autism specific advocates is even greater as adults with autism struggle to account for their own disability during the Work Capability Assessment and from April the Personal Independence Payment Assessment.

Without the aid of an advocate from the first point of contact for the Work Capability Assessment, adults with autism are being placed at a substantial disadvantage compared to other people with disabilities who are in the same situation as them. Furthermore the reasonable adjustments required to move this disadvantage are not made.

Adults with autism can struggle to communicate effectively about themselves in benefit assessment situations for two reasons: they have a communication and socialisation impairment which impacts on every communication they make and many do not fully understand their own condition and how it impacts on their lives.

Act Now For Autism asked 208 adults with autism if they would want an advocate to support them and to help them to communicate effectively during the Work Capability Assessment and also during a Personal Independence Assessment:

• 96% of these adults told us that they do want the support of an advocate to enable them to communicate effectively with a good understanding and knowledge of autism.

• 3% of adults said that they would want an advocate to support them to enable them communicate effectively.

• 1% said that they would not want an advocate.

People with autism who are non-verbal and have a learning disability will have great difficulties in making their needs and wants understood but tend to be accepted as needing advocacy which is often automatically available to them through statutory support.

It is often assumed that as people with Asperger’s Syndrome and HFA, who have average intellect and the ability to talk, are therefore able to fully and comprehensively communicate and state their view due to their verbal ability. It is this area in which people with Asperger' Syndrome/HFA are in great need of advocacy because although they can talk they are not always able to communicate effectively or adequately express their intentions or emotions.

The ESA 50 Questionnaire is long and difficult for someone with autism to both interpret and answer. Because adults do not always fully understand their own condition and this can mean that they are not accurately answering some of the questions in the ESA 50 about their functionality correctly or appropriately.

Many people with autism cannot work and most (according to research over 85%) of those even with Asperger’ Syndrome/HFA have never been successful in obtaining or remaining in employment; their benefits have therefore been a source of stability and a replacement for the lack of statutory support or autism specific intervention that they should have been able to receive.

We believe and are campaigning for independent advocacy to be offered to every autistic adult at the first point of contact by the DWP, regardless of their perceived work capability.

Adults with Asperger’ Syndrome/ HFA are now in constant state of crisis and alarm, they are desperate and anxious as even if they succeed in gaining ESA, they will soon be asked to complete the ESA50 again and then attend another assessment to see if their autism and fitness to work has improved. They also fear that, if the health professional or decision maker does not understand their disability, their benefits will be taken from them if the assessment is not successful.

It seems there is no end to this increasing cycle of assessments and reassessments in their current format for people with Asperger’ Syndrome/HFA and the implementation of PIP will put ever more stress and pressure upon autistic adults and their parents and/or carers.

It is essential to put in place robust advocacy services so some of the most vulnerable in society, can continue to rely on the benefits to which they should be entitled. Adults with Asperger’ Syndrome/HFA need as much and the same sort of advocacy as those who have autism and a learning disability, and this service is cost effective and essential for their mental and physical health and wellbeing. Advocacy is low level preventative support at its best and would save money by reducing appeals and tribunal costs.

We would be grateful if you could respond to this appeal with some specifics on how the above problems can be addressed.

In anticipation of your response

Carole Rutherford
Anna Kennedy OBE
Teresa Catto-Smith
Mavourneen Moore

Act Now For Autism Core Team

My Life With Autism - Employment

As part of our ongoing My Life With Autism series, one of our co-ordinators, who wasn't diagnosed with an ASD until he was 30, wrote this piece about some of his experiences in education, of adult life and employment. He wishes to remain anonymous: 

My years at school were not pleasant. I had always had difficulty interacting with my peers at school. I was well behaved on the whole but just didn’t seem to be the kind if guy people hung out with. Then just prior to starting secondary school the bullying started and it carried on and on and on and on.
I spent my most of my time in secondary school trying not to socialise in the hope that I would not attract too much attention and get living daylight kicked out of me. I did develop one or two safe friendships or at least to me they were but they turned out to be somewhat problematic. People change their minds very quickly they feared being made an outcast.

Why am I saying all this?

Well this view of relationships formed the basis for how I interacted at work later on and the problems I then had to overcome. What happens at this point in a child’s life affects how they will respond to situations that arise in the workplace. Anxiety is the autistic persons worst enemy, it will try and dominate their lives to the point of paralysis. More importantly the fear it produces will prevent them from achieving their potential in life and that is really is the point, isn’t it?

Between finishing school and starting college I took a summer job (my first full-time job). It was somewhat nerve racking as I had little or no idea what to expect. I discovered very quickly that relationships in the workplace were often quite complicated. Just because someone was being nice and polite, didn’t necessarily mean they liked you and more importantly I very little idea how to read people/situations and respond appropriately.

I struggled in college too, I was studying engineering and my maths wasn’t great. I had an interest in electronics, computers and I pursued it with vigour but all I really wanted to do was explore and experiment. As I’ve come to understand structured learning is a discipline and at that stage in my life I really hadn’t got it. When you can develop the discipline of structured learning it ceases to be an obstacle to your vision, your project, it becomes a tool to help you make things better. It can be a source of inspiration for ideas and the process of learning can become a pleasure rather than a pain. I look back on those years now, realise that it was one of the first pivotal point in terms of the journey I was on. The course tutor developed something of a dislike for me (he taught maths) and with my maths marks being low I was encourage to drop out after the first year. On reflection had I been persistent and perhaps re-sat the first year I might have had a much smoother ride but as it was I just rolled with it. And left feeling somewhat of a failure.

Many autistic people I have met over the years have told me similar stories. Autistic people usually think a little differently to most people, they focus only on what has value to them in terms of knowledge. It’s the project that’s important not simply knowledge for the sake of it. Many graduates come out of University with no idea what the really want to do. They have gone through the motions and met the requirements but where is the vision, the reason. Autistic people have vision they just don’t know how to get there, or they don’t believe they can. They are afraid to try.

I subsequently had a couple of different jobs. The second of these was as a Lab Tech. in a school which was really just code for a gimp (a sort of slave with no particular job description). As it turned out this particular school had an early RM network and very few members of staff who had any idea how it worked. I helped looking after it. I very quickly found myself being given all manner of technical equipment to figure out by staff who were not sure or didn’t have time. There was just one problem. I’d not been sanctioned to do it. This resulted due to my weak communication and conflict resolution skills, in me being bullied by an over zealous head teacher. I used the term bullied because it’s one thing to be told your in the wrong in some way and given chance to explain yourself. It’s another to be deliberately intimidated and unable to explain your actions. I don’t think I really understood what was going on at the time. I left with yet another failure under my belt. I had however managed to persuade my employer to give me day release to go back to college and try and converted my previous successful study to a different qualification. So I didn’t come away entirely empty handed.

Understanding the expectations of an employer is key to functioning well in a work place. Whether you choose to accept this or not, there is assumed knowledge and behaviour. Employers therefore don’t alway feel that need to explain how things should work, the chain of command, define responsibilities. To an autistic person this is a must. They need to know what is expected of them, the appropriate response when faced with uncertainty about what to do.
If there was one reason more than any other that autistic people find it difficult to hold down jobs it would be “lack of assumed knowledge”. If both the employer and employee have good clear method of communication (that works for both of them) and clearly defined and fully understood expectations from the outset there is no reason why an autistic person can not be valuable resource to their employer.

I shall resist giving a full CV here but I spent the subsequent 6 years working as an IT Technician moving between jobs building knowledge and learning, I had received no formal training thus far but by the time I left my final IT Technician role at Birmingham LEA’s Education IT in November of 1997 they had just recruited a team of IT Technicians for their Technician Service. When I arrived in December 1994 there was no LEA Technician Service. I was the first Technician and although I hadn’t realised the significance of it at the time. It was this innovative nature that would define my career.

This was the second key pivotal point in my career. By this time had begun studying with the Open University and I knew that I wanted to do something more than simply tech. support. I moved way from Birmingham to Northumberland, looking for some direction. Applied for Jobs but got no where. I was however spending most of my time exploring many internet related technologies which would form the basis of what I was to do later on.

It was at this point I made a decision. I wanted to be computer programmer. I had been programming as a hobby since I was 10 years old, I was 25 at this point. A chance online encounter with another OU student would give me that first step. He offered my the chance to code on a small project for a company he was contracting with in Birmingham. It was in a language I’d never worked with before but I didn’t care. Within a couple of months I was  back in Birmingham working with them full-time. I really did enjoy it but it was to be short lived, they had financial problems and had not been paying my tax forward. I now knew what I needed to do, it was time to move on.

I managed to get a place on clearing in the August and by September I was at University on a 2 year full-time HND. In the 13 years since then I have worked as a Web Developer for a variety of different businesses been involved in some great projects and some great moments of innovation (firsts).

I say all this because many autistic people believe that the obstacles to their successes cannot be overcome. That they can not develop sufficient social skills to cope in the workplace even though that may have the intelligence and in some cases nothing short of a gift in their particular area. I did have a lot of difficultly and I have made it sound a lot easier than it actually was to cope with at the time but I firmly believe that many of these difficulties could have been eased simply by having the right support.

I wasn’t diagnosed with an ASD until after my first post-graduate job (I was 30).
I’ve hinted at many of the reasons of autistic people being unemployed or seen as unemployable already but many of the arguments are I have heard even from autism specialist organisations all seem to miss one key point which is this:

It’s about the person not the job or the education system. You can have the best education system in the world but if the person doesn’t believe in themselves and the system doesn’t come along side support them with encouragement then it brings them no hope. If an employer doesn’t believe in the capability of a person they are employing and the employee doesn’t believe in themselves either how can it ever be a truly productive relationship.
Success is relative. 

As Einstein said, “Everyone is a genius. But if you judge a fish on it's ability to climb a tree, it will live it's life believing that it is stupid.” 

It’s more important to help an autistic person find the right path for them and encourage them in it than to push them down a path they can never reach their potential on. It’s a waste of their time and doesn’t benefit society or the economy in anyway.

There are many things the Government can do to support an Autistic young person through education and work placement but in the end the greatest reform needs to happen in business. Business sees employing people with difficulties more as a risk management exercise than an opportunity and improve their company. You don’t get gains in business without risks. There are many examples of autistic people who brought about massive leaps in innovation and discovery, yet if no one had listened we would never have known.