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
(AS), he's suffered with it all his life (it is a lifelong condition
with no cure other than understanding and 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 aspergers' 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 two
years on. He is still trying to find work. He has had no support
from 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 one 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
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