Migration to ESA

ESA 44

Written evidence submitted by Eleanor Wakeling

I'd like to submit my concerns about the proposed changes to ESA in relation to my brother and other adults with autism. My brother is a pretty typical adult with Asperger's syndrome, he's suffered with it all his life (it is a lifelong condition with no cure other than understanding & awareness) but was only diagnosed aged 30. He is intelligent, hardworking and honest, but cannot communicate in social contexts and situations, and becomes stressed, anxious and unable to function when it's demanded that he do so.

1. The Department’s communications to customers going through the assessment and whether the information, guidance and advice provided by the Department and Jobcentre Plus is effective in supporting customers through the process.

My brother was unemployed when he was diagnosed with AS, but desperate to find paid work to start to regain his independence and sense of self. He applied for ESA, hopeful that he would be offered aspergers-friendly advice and assistance on getting back into the job market and not be forced into doing jobs that would make him stressed, anxious and depressed - as promised by the ESA "blurb". The national Aspergers specialist who diagnosed him provided a detailed 15 page report on what types of work he would be able to do easily, and also what types of work would cause him distress. Sounds simple.

Unfortunately, it does not appear that DWP assessment processes, information, or staff have any training or understanding of autistic conditions or the difficulties in communication and social understanding that the sufferer has to deal with. He was not offered any communication advocate, so I helped him complete the assessment form (which he needed a lot of interpretation for - he took each question at purely face value and answered simply yes and no even where that did not reflect the true intent of the question - because he did not see the true intent of the questions and because the questions were directed towards people who have normal social understanding of lateral, metaphorical and social language). My mum accompanied him to the face to face assessment, but she was shushed up by the doctor when she tried to explain my brother's yes and no answers more accurately, before the doctor told my brother that she didn't see that there was anything wrong with him because he played computer games like any other lad. We were also told that the nationally recognised specialist's report his aspersers’ specialist had provided us with had been intentionally ignored because "the DWP like to focus on what a person can do, not what they can't" - even though that's exactly what the report contained!

This is not the only story I have heard in relation to people with autism spectrum conditions applying for benefits. It is clear that there is completely inadequate training and understanding within the DWP in relation to people with Autism Spectrum Disorders (ASDs) applying for ESA as a route to support get them back into work.

2. The Work Capability Assessment including: the assessment criteria; the service provided by Atos staff; the suitability of assessment centres; and customers’ overall experience of the process.

My brother left the WCA feeling marginalised, patronised, overwhelmed, stressed and unfairly treated, with no source of income or appropriate help getting a job. The criteria are clearly geared towards people with a physical or IQ-related learning disability and there is no scope for inclusion for people who understand things differently from neurotypical people. This paucity of social communication affects the type of work ASD sufferers can do so it makes no sense that the assessment process does not reflect this.

3. The decision-making process and how it could be improved to ensure that customers are confident that the outcome of their assessment is a fair and transparent reflection of their capacity for work.

There needs to be provision of an independent, ASD trained advocate throughout the whole process of assessment and any reassessment, and training of DWP staff in ASDs. As such the assessment is completely unfair on ASD sufferers. Assessors need to listen to advocates and not poo poo information from people who know the applicant best.

4.The appeals process, including the time taken for the appeals process to be completed; and whether customers who decide to appeal the outcome of their assessment have all the necessary guidance, information and advice to support them through the process.

My brother's appeal is still ongoing, nearly 2 years on. He is still trying to find work. He has had no support rom the DWP in this and when we have asked for transcripts of the appeal ruling to contest this, we have been given illegible handwritten extracts, and refused typed ones. We have been offered verbal interpretation but only if we can tell them what it is we can't read - clearly if we could tell them that we wouldn't need the explanation. This is entirely insulting and unsatisfactory.

5. The outcome of the migration process and the different paths taken by the various client groups: those moved to Jobseeker’s Allowance, including the support provided to find work and the impact of the labour market on employment prospects; those found fit for work who may be entitled to no further benefits; those placed in the Work Related Activity Group of the ESA, including the likely impact of the Department’s decision to time-limit contribution-based ESA to a year; and those placed in the Support Group.

My brother was refused ESA and offered JSA instead. He has been on JSA before and found it stressful and degrading being offered jobs completely inappropriate to his capabilities. You would not suggest someone with the use of only one leg get a job as a door to door salesperson, so why suggest that someone who cannot communicate in the same way as most people get a job in a telesales centre, and then penalise them for being honest and telling you they would not be capable of doing such a job. In the end he found the demands of JSA too stressful and in fact he felt it was dishonest to keep attending the interviews they demanded he attend, as he knew he couldn't do the jobs. He refused JSA and started to live off his credit card. Inevitably this led to financial disaster and he is now living with my mum who is a pensioner and struggling herself. I help out when I can.

Limiting ESA to 1 year for anyone with a lifelong condition, whether aspergers, other forms of autism, or any other issue, seems completely pointless, costly in terms of reassessment time and money, and certainly for ASD sufferers, incredibly stressful and counter productive in terms of their ongoing well-being and confidence within society.

In summary:

The ESA application process marginalises people with Autism spectrum disorders (ASDs), has no understanding whatsoever of their needs, to the extent of causing severe stress to sufferers which exacerbates their condition and can even reduce their capacity for work. ESA applicants with ASDs are unfairly treated in the assessment process, are ignored during the appeals process and attempts by family members or other advocates to explain more accurately the exact problems facing sufferers are specifically ignored.

This is a biased, unfair, degrading process for ASD sufferers, which often leads to refusal of ESA thus throwing the financial burden of care onto already struggling and stressed family members - and deprives the job market of hardworking, honest but misunderstood employers who just happen to need understanding and patience in the workplace.

April 2011