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.

Call For Trained Advocates

Act Now For Autism supports the call for a Cumulative Impact Assessment of the Welfare Reform Act. The changes to benefits are falling disproportionately upon disabled communities across the UK and our particular concern is for those with hidden disabilities, like autism. We want to highlight our call for an autism-trained advocate to be offered to every adult with autism at their first point of contact with the Department of Work and Pensions:

When the changeover from DLA to PIP is rolled out in April adults with autism are looking at the prospect of having two face to face assessments. People with autism and Asperger's syndrome have difficulties with social communication and flexibility of thought. This includes how to understand and work out what another person is thinking or feeling by reading and interpreting body language, gesture and facial expression.

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 and High Functioning Autism (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's/HFA are in great need of advocacy because although they can physically talk they are not always able to explain and express what they actually think or thought, intend or intended to do or emotionally feel or felt using the medium of speech.

Autism is a complex disability and anyone who acts as an advocate requires a good overall understanding of autism. There are very few advocacy services that are freely available to adults with Asperger's/HFA and even fewer advocacy services that have specifically trained advocates to support people with autism.
 Most adults with Asperger’s/HFA are not eligible for statutory services and cannot access advocacy groups for a range of different reasons. An advocate with a background in autism can explain the condition of Asperger’s/HFA when attending a benefit assessment with the individual. They can also write reports and support letters as even if the person has intellectual capacity s/he may lack the insight into her/his condition that the advocate can provide.

We are extremely concerned by comments being made by Esther McVay that most adults transitioning from DLA to PIP will have historical evidence which can be used to decide if they would require a face to face assessment. There are thousands of adults with autism who have seen no one about their condition since being signed off from Children’s Services. This is because autism is not deemed to be a medical condition and these adults have never been eligible for services despite their lifelong need. Many adults with autism will simply have no evidence to provide, historical or otherwise. This means that once again adults with autism will be placed at a substantial disadvantage because their disability does not fit neatly into a box.

PIP will require an adult to complete a questionnaire similar in style to the ESA 50 Questionnaire which is long and difficult for someone with autism to both interpret and answer. Autistic 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.
Functionality is what matters, not what the specific condition the person has.

Case study:
Client B was found “fit for work” at an Employment and Support Allowance Work Capability Assessment; her benefits were stopped; amongst other statements she told the health care professional that she did “all her own cooking and meals”, so was assumed to be independent and work ready. B suffered needless anxiety and stress while waiting 6 months for the appeal and self-isolated during this period; she appealed the decision at tribunal with the help of an advocate’s report and presence where it was explained that her “independent cooking” was purely making toast and marmite for breakfast and microchips for her tea, as she ate little else. Due to her phobias no one else could touch her food. The advocate was essential for client B. ATOS Healthcare, DWP decision makers and the tribunal time and costs could have been saved plus the anxiety and stress endured by Client B if an advocate had been available at her Work Capability Assessment.

Many people with autism cannot work and most (over 85%) of those even with Asperger’s/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.

People with Asperger’s/HFA are now having their ESA re-assessed on a regular basis and it can be removed, without much notice, by professionals with little experience of Asperger’s /HFA. People with Asperger’s/HFA look normal as it is a hidden disability, and their intelligence and ability to speak can often be considered to be “fitness to work”. The fitness for employment of a person with Asperger’s syndrome is assessed by first answering questions on the ESA50 form which expect some insight into their condition, which they many often lack due and secondly measured in the WCA by questions about “a typical day”. Their capacity to live independently and use a washing machine are scored rather than the challenges they face due to their inability to understand and process instructions, cope with colleagues, deal with change and inconsistency in a work environment, and manage their anxiety and stress levels.

We believe and are campaigning for advocacy to be offered to every autistic adult at the first point of contact by the DWP, regardless of their perceived work capability. 95% of adults with autism we asked said they would prefer to be supported through the benefit process by an autism-trained advocate.

Adults with Asperger’s 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’s/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’s/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.

Act Now For Autism
www.actnowforautism.co.uk

Written by Carole Rutherford (Act Now For Autism and AIM) and Sara Heath (Shropshire Autonomy) 

Please Act NOW For Autism And Email Your MP!

CALL FOR ACTION

We are asking all supporters to email their MP's ahead of the Atos Debate in the Main Chamber at Parliament this Thursday. We have written a sample letter below, which you can copy and paste into an email and then personalise with your own story if you have an Atos experience. 

You can contact your MP via the WriteToThem website: http://www.writetothem.com/

" Dear <insert MP name>

MPs are being given the opportunity to debate the Atos Work Capability Assessment in the Main Chamber on Thursday 17th January. I support the Act Now for Autism Campaign (www.actnowforautism.co.uk) and along with them I ask you to attend this debate. Please add your voice to the growing concerns of the autism community about the WCA.

Main Concerns: 

The Work Capability Assessment is not ‘fit for purpose’ as a method of assessing whether autistic adults are fit for work. Neither does it identify those who may be able to work but would need a lot of support to do so.

It would seem Clauses 3, 4 and 5 of section 20 of the Equality Act are being contravened. Reasonable adjustments are not being made and adults with autism are being placed at a significant disadvantage to other people, even compared to other disabilities and at present no steps are being taken to avoid the disadvantage. 

Despite autism being a communication disability, autistic adults are not being offered an advocate to act as an auxiliary aid. 

Part B10 of the Equalities Act is also being ignored and is being breached during the assessment process, as the effects of the environment in which the assessment is being carried out is not being taken into consideration. Adults are becoming so anxious by the process that it is seriously impacting on their ability to function effectively on a daily basis. 

Volunteer advocates within the autism community, who are living with autism themselves, are having to guide adults with autism through every step of the process, and have found that they cannot keep up with the demand for their support. They often report they are then not allowed to speak during the assessment by Atos heathcare professionals. Therefore, autistic adults are not being given the (equal) opportunity to communicate effectively and neither are they then assessed fairly.

Act Now For Autism is campaigning for advocates to be offered to every adult with autism at the first point of contact by the DWP, and for separate autism-specific descriptors. Please see their Harrington WCA 3rd Year Review evidence for more information: http://autismcampaigners.blogspot.co.uk/2012/09/wca-year-3-call-for-evidence-our.html

I really hope you do speak up for the autistic adults in your constituency, who are so often failed by statutory services from the time they leave children's services and now also feel they are being classed as 'scroungers'. Please attend and speak up for them.

Yours faithfully

<insert your name> "

Marching Into 2013!

In July 10th 2010 Act Now for Autism took the first steps of a campaign journey that continues on into 2013. In this new year we will review the Impact Assessment we produced in July 2010, we want to know how and where the cuts and changes to benefits are impacting on lives across the UK.

We continue to believe that the WCA is not fit for purpose and in 2013 we intend to add our voice to the campaign for a cumulative impact assessment on the WCA and ESA.

2013 will be the year when we will all really start to feel the impact of the cuts and changes to our services and our entire benefit system.  The coming new year will see all the changes become a reality.

We will see the roll out of Universal Credit for new claimants, which will see the disability element cut. Families will feel the impact of the bedroom tax from April. People will begin to apply for PIP and move over from DLA, a new system and benefit that will include having a face to face assessment in addition to the face to face assessments that some adults with autism are already enduring as part of the ESA Work Capability Assessments.

Adults with autism must be offered access to an advocate at the first point of contact for both the WCA and a PIP assessment.

Changes to funding means that parents continue to fight to prove that their autistic children are disabled enough to warrant services and provision. Act Now For Autism fears that the changeover from statements for children with SEN to Education and Health Plans (England) will do nothing to improve this situation. In Scotland the rollout of the Getting It Right For Every Child strategy is causing concern as is the change to Self Directed Support.

2013 will be the year we must double our efforts - we will need your help. Autism continues to be misunderstood and under-represented. Even within the disability forum at large, children and adults with autism can be marginalised because autism can be a hidden disability.

The English Autism Strategy ‘Fulfilling and Rewarding Lives’ will be reviewed this year and that is something that Act Now For Autism will be taking a keen interest and hopefully an active part in.

The All Party Parliamentary Group for Autism has written to Margaret Hodge MP, chair of the Commons' influential Public Accounts Committee, expressing its concern about the limited progress being made in implementing the Autism Act 2010. Act Now For Autism shares those concerns. There is no level playing field and no national baseline for the implementation of the strategy. It is therefore difficult to measure any overall progress that has been made. We are concerned about the accuracy of monitoring the progress of the strategy within Local Authorities via a self assessment framework. Any assessment should include both service users and the views of those who have been unable to access services that they believe that they require.

We will be pressing hard for autism specific advocates to be given a high priority in the Strategy when it is updated. We believe that having access advocates for adults with autism has become essential and that need will increase again with the roll out of PIP.

We would also like to see much more in the strategy that would move progress towards the needs of adults with Asperger Syndrome and High Functioning Autism being met.

In Scotland the main focus will be the continuing implementation of the Scottish Autism Strategy, we also want to make sure autistic adults of all abilities are catered for. £1.12 million was made available to local authorities to develop strategies and action plans. Local autism co-ordinators are mostly in post now and the strategy continues to be monitored. We will be pressing for autism specific advocates in Scotland too and more robust measures in place for transition into adulthood across the country. We also would like to see better use of the Additional Support for Learning legislation and for the Getting It Right For Every Child ethos to provide better focus on the individual needs of autistic children.

In Wales there was a consultation earlier in the year to further implement the All-Wales Autism Strategic Action Plan strategy. Much criticism was leveled at current support mechanisms like the Community Care and Unified Assessments, as well as CAMHS, CMHT and social services who were felt to have not had either the investment nor the proper training (we know this is an issue across the wider UK too) to fully support all people on the spectrum appropriately. 

There has been some success in Wales but it's time to listen to the concerns of those on the spectrum, individuals and families in Wales and to provide better basic support for life skills, employment/self-employment opportunities - the same can be said across the UK. 

On December 3rd The Northern Ireland Government launched a document for public consultation aimed at achieving improved outcomes, services and support for people with autism, their families and carers. We hope to be involved along with members of our NI regional group. There are major gaps in provision in NI and we need to increase pressure on the Government here.

2013 is going to a BIG year for the Autism Community in England, Northern Ireland, Scotland and Wales. Act now For Autism is committed to campaigning for the Autism Strategies across the UK to be improved and above all, to be more inclusive of all people on the spectrum and to be the very best strategies in the world!

We are going to need YOU to help us march through this year and continue our campaign work and update our impact assessment. Now is the time to be proactive, people across the country will now start to feel the changes and fully realise what is going to happen. 

We have to stick together, work together and shout together with one voice.

March with us!

HAPPY NEW YEAR!

Merry Christmas!

We know Christmas can be a very tricky time for autistic children and adults but we really hope you can enjoy a peaceful, calm and happy Christmas.

Carole, Teresa, Mavourneen and Anna xx

MERRY CHRISTMAS!

My Life With Autism - ESA50

Continuing our series My Life With Autism, our campaign manager Carole Rutherford wanted to share with you her experience of completing the ESA50 form for her son when he migrated from Incapacity Benefit to Employment Support Allowance: 

"The Work Capability Assessment was the only thing that the eldest of my two sons with autism could talk about. We had to endure question and answer sessions about the assessment every time we sat down to eat our evening meal. This started in 2 years ago when my son realised that he would have to be migrated from Incapacity Benefit and onto ESA.

Despite not having any idea about what questions he might be asked my son had a practice run every day of what he would say in response to any question that he would be asked.

My son has Aspergers Syndrome. He also has Keratoconus, which is a degenerative visual impairment. He has OCD, multiple allergies, asthma, he suffers from headaches on a daily basis and has 3 separate skin conditions all of which become much worse when his levels of anxiety increase. He also has extreme sleeping issues. His body no longer works to a 24 hour cycle.

My son has never worked.

He stopped going to school after he was hit by a car while going to school in an extremely distressed state when he was 11 years old. He never returned after the accident. He never leaves the house on his own and even when with someone I can probably count on my fingers how many times he has left the house this year.

After weeks of incessant talking about a Work Capability Assessment, during which time his anxiety levels rose to a level that I could no longer ignore, my son decided that he did not even want to hear those words used in our house. He could no longer cope with even the thought of a face to face assessment with a stranger in a strange environment never mind talking about it.

I spent a year trying to access someone in mental health who could help to support my son. The fact that it took that long for me to find someone who was willing to see my son only underlined how isolated within our Local Authority my son is. There simply were no services that were designed to meet my son’s complex needs. Had he been diagnosed with autism we could have seen someone within a very short space of time, but his Asperger Syndrome excluded him from any services that we did have.

 It was one day back in July (2012) when we received the call from JobCentre Plus. After checking that I was in fact my son’s appointee the Jobcentre Plus adviser was happy to speak to me. I was informed that the phone call was being made just to make sure that my son had received a letter telling him that he was being migrated from Incapacity Benefit to Employment Support Allowance. He had not. I was then read the content of the letter. The letter was quite short and to the point; I was feeling increasing sick and anxious with every word.

I was told that an ESA 50 Questionnaire would follow our conversation and I requested that everything for that point be addressed to myself and not my son. I was assured that it would be.
The ESA 50 arrived two weeks after the telephone call and even though I knew exactly what to expect having read the ESA 50 on numerous occasions on the internet, looking at it and knowing that every answer on that Questionnaire counted raised my levels of anxiety. And so it continued. I cannot remember feeling as anxious as I did at that point. My every waking moment was taken up by the ESA50 questionnaire and it was also the first thing I thought about the moment I woke up.

Answering the ESA 50 was a nightmare. Even though I knew that the questionnaire did not ask questions in a way that was going to make it easy for me to reflect the difficulties that my son has on a daily basis, trying to do just that was probably one of the hardest things I have ever had to do.  It took me three weeks to complete. This is despite being able to access support and advice about the questionnaire. My stress and anxiety levels rose on a daily basis. Just thinking about the questionnaire made my heart race and I spent all day and every day on a heightened state of alert.

The questions simply did not allow for the complexities of autism and I realised very quickly that they did not allow for the complexities of his degenerative visual impairment either.

Finding a way to clearly outline the problems that my son has functioning on a minute to minute basis, never mind on a daily basis, left me feeling mentally exhausted.  I found myself thinking about my answers to the questionnaire all of the time and going back and changing and amending my answers. I became totally obsessed with the questionnaire and found it difficult to focus on anything else.

Eventually I decided that I could make no better of the answers that we had given and so we sent the ESA50 to Atos.  I had read that it could take weeks to hear back following receipt of the questionnaire and it was difficult to keep a lid on my ever growing sense of ill ease.

My anxiety worsened because I knew that our wonderful GP was on holiday at the time the questionnaire was received and then became ill so the request from Jobcentre Plus to supply them with information about my son and his medical conditions would lie in his in tray.

I waited for the post every day and every day the sense of dread increased. I am currently waiting for an operation and I decided to ask if it could be postponed until we knew  the outcome of my son’s transfer from IB to ESA because I knew that there was no way that I could cope with my son if he had to have a WCA post op.

When news finally arrived it came via a small piece of paper that was attached to an ESA 3 questionnaire. The slip of paper read:

 ‘Dear Sir/Madam

As you have been placed in the ESA Support Group following conversion from Incapacity Benefit, you may qualify for Income Related ESA. To claim this complete and return the enclosed ESA3 form.'

The words ‘support group’ jumped off the page at me but as there was no letter with the questionnaire I was not sure that I dared hope that this was really about my son.

The new questionnaire was addressed to me. The day after the new Questionnaire arrived we got a letter confirming that my son was in the support group. It arrived on the same day as my youngest son’s DLA renewal forms.

It is safe to say that I personally heaved a sigh of relief but I also expected to feel as if an huge weight had been lifted from my shoulders, strangely I did not. Maybe because I know that it does not end there. My son will have to be reassessed again at some point in the future.  I also know that he could never handle this process on his own. He simply could not cope. I am not sure that I did.

I have spent the last two years campaigning for advocates to be offered to every adult at the very beginning of the WCA process.  I had an inkling of how difficult this process was for adults with autism and their families, from what I have heard and been told via Act Now for Autism. But not until I took the phone call from JobCentre Plus did I have any idea at all as to just how much the process was going to impact on me and my emotional well being.

If we had had a raft of medical evidence to draw on maybe I would not have felt as stressed out and anxious by the process as I did. But my son, like a great many other adults with autism, was cast adrift from services and support when he was signed off from Children's Services when he was just 16 years old. The whole process really brought it home to me just how much we are failing adults who have recognised communication and socialisation impairments.

Autism is not an illness but it sure as heck impacts on the lives of those living with it, so WHY are we still having to fight for the support and services that both children and adults need? WHY despite having an act of parliament dedicated to autism are our vulnerable adults not being protected and given the support that they desperately need when going into a benefit assessment situation?

As it stands at the moment the Autism Act and the Adults Autism Strategy 'Fulfilling and Rewarding Lives' is not ensuring that adults with autism are able to access the professionals and advocates they need to be able to access at a time when they are in most need."

#PatsDebate - The WRAG - A Ticket To Nowhere

From Carerwatch

+ PATS DEBATE – the WRAG – a ticket to nowhere

December 9th, 2012

ESA WRAG is a ticket to nowhere.
CarerWatch hope that Employment Support Allowance (ESA) will be put fully under the microscope for the first time in Pat’s Debate.

In particular that speakers will look at the Work Related Activity Group (WRAG) and tell the real truth about it.

The government should admit that the WRAG is not about finding work. The WRAG is simply about moving sick and disabled people from an unconditional benefit to a means tested benefit to save money.
Four fifths of sick and disabled people will be allocated to the WRAG on migration from IB. It’s becoming clear that ESA is an out of work benefit like JSA. It wasn’t protected from the inflation cap in the Autumn Statement. You are expected to find work.

It treats people as effectively fit and time limits them to a year before means testing. The feature that terrifies most disabled people is the coercion in the Work Programme with forced work placements and sanctions for non compliance. It is unfair to force these decisions on disabled people if you haven’t walked in their shoes.

The cover story is that these people are on their way to work when in fact only 1.5% of sick and disabled people are finding work through the Work Programme in the WRAG.

The WRAG is a confidence trick for moving to means testing disability support.

Can speakers in this debate be the first to be honest about this?

The heart ache over the WCA tests is really located in what the future holds when you are allocated to the WRAG.
ESA WRAG is a ticket to nowhere.

Already people are saying that after testing, failing, appealing, succeeding, retesting, failing, sanctions, Work Programme, when the means test is looming and they know they will not get any more support – they give up and drop out. 

Don’t let the people who give up and walk away count as people who disappeared and probably got jobs. They didn’t. They just gave up.

+ The WRAG is a JSA group

November 21st, 2012

Commenting on Professor  Harrington’s latest report the Minister for Employment, Mark Hoban, said:
“The WCA is the right process for determining who is able to work and who needs support. It is in everyone’s interest to make sure the system is as fair and as accurate as possible. ”

Once again the Minister is completely missing the point. The government has decided that four fifths of people who used to receive Incapacity Benefit are now fit for work. This has been decided not by tests but as a matter of policy. The tests are a fig leaf to legitimise this decision and present them with the news. The terms ‘fair’ and ‘accurate’ do not apply.
People who are able to work go on to JSA. People who are sick or have a disability are meant to go on to the Employment and Support Allowance but they don’t except for a minority who go in to the small residual ESA Support Group. Where do the others go? In to the ESA Work Related Activity Group (WRAG).
This is a trick. The WRAG is described as an ESA group but is in all but name a JSA group. There they will be harried by forced activity and sanctions and then timed out just like a JSA group. Effectively they are being required to work.
It would be more honest if the government stopped hiding behind a testing system and just announced that in future four fifths of sick and disabled people are now going to be treated as fit people.
-  http://www.guardian.co.uk/politics/2012/nov/30/sick-disabled-work-benefits-programme?INTCMP=SRCH