Sunday, 27 November 2011

ACT NOW response to WCA Year 2 Call for Evidence Review Report

In September, ACT NOW responded to the Work Capability Assessment Year 2 Call for Evidence made by Professor Malcolm Harrington. Summarising our evidence we stated:

"ACT NOW believes that the assessment process in its current form does not reflect the complex needs of adults with autism."

We firmly believe that the descriptors do not reflect the complexities of the autistic spectrum. We also believe that tinkering with the descriptors will never be enough for adults with autism. This is especially so for adults who have Aspergers Syndrome or High Functioning Autism because they neither come under the mental health or learning disability heading.

We accept that adults with autism can have mental health issues and their condition can also fluctuate depending on their current state of health, their environment and any stress apparent in their lives at that time. Adults with autism also have sensory issues and can struggle acquiring knowledge by the use of reasoning, intuition or perception.

Autism does not sit neatly in any one descriptor - we will continue to campaign for autism to have its own descriptor.

On 24th November the Independent Review of the Work Capability Assessment – Year Two  - published its report.

ACT NOW is both astounded and deeply concerned that despite Professor Harrington and his review team being able to endorse recommendations (made by the NAS, MIND and Mencap) to improve the current descriptors and make the Work Capability Assessment a less stressful experience for adults with autism, the DWP have decided "that more work needed to be done to test and validate the evidence underpinning the recommendations".

Professor Harrington in his report is now recommending that "a gold standard review" is carried out, beginning in early 2012. Future decisions about the mental, intellectual and cognitive descriptors should be based on the findings of this review. The review also states that "robust evidence" will be required to implement any further changes - the sub-text being that to date there has not been sufficient evidence to support changes being made NOW.

This is not good enough, the DWP are stalling. As such, vulnerable adults with communication and socialisation impairments are to be measured by a yard stick that was never designed to measure their complex and specific needs. We know that plenty of evidence has been provided by all of the responding groups to the call for evidence.

ACT NOW would also like to highlight how difficult it is for adults with autism to share information about themselves accurately and also to different people, which is what they are expected to do already, often without an advocate. Face-to-face assessments where they have to discuss aspects of their lives will be incredibly stressful and on the basis of this review report, will continue to be.

The WCA (in it's current form) is not fit for purpose and will remain so for at least another 12 months. In fact, one 'conclusion' from the review is: "Inevitably, the whole process has been time consuming but the Review believes that positive changes are in the pipeline. A little patience would be valuable here from the critics, but a recommendation for year three will be to report, in detail, on progress using a series of agreed indices. For example, any reduction in the rate of successful appeals may be one indicator of change for the better although it is not the only one."

Disabled adults (and their families and carers) will therefore have no choice but continue living in fear whilst fighting hard to get benefits just to live day-to-day. Many adults with autism will have been assessed in that time, many incorrectly by a system currently not fit for purpose. The fact that the possible reduction in the rate of successful appeals is a possible measure of "positive change" through the WCA assessment process is appalling - it may actually be an indicator that less people bother to appeal via a system which in itself is not working properly or efficiently.

In the short-term there was agreement with DWP to consider the ESA50 form and whether it is possible to incorporate elements of the recommendations around frequency, severity and duration into this so that initial evidence from claimants allowed more informed decisions. There was also scope to consider changes to specific words or language used in the current descriptors by clarifying their intent or application to help improve the assessment.

To consider changes of course does not mean that any proposed changes to the ESA50 form are to be accepted. This form is proving to be very difficult for adults with autism to fill in without the aid of an advocate. The form itself is creating untold stress and anxiety for adults with autism. The results of this review have changed nothing.

ACT NOW continues to campaign for trained autism advocates to be offered at the first point of contact by the DWP.

"In the longer-term there was agreement of the need to build an evidence base to inform any future changes to the mental, intellectual and cognitive descriptors. This could take the form of a ‘gold standard’ review to establish evidence of the way in which the current descriptors are working and to test robustly the proposed descriptors to see if they would improve the assessment."

How long is "in the longer- term"? Will anything change before the majority of our adults have had to face the assessment? The review states: "An initial and constructive meeting about the ESA50 was held between DWP and the representative groups in October 2011. It was agreed that the representative groups would produce a suggested improved version of the ESA50. No timescales were agreed for this, although the expectation is that this will happen relatively quickly."

Broadly speaking the recommendations recognise that 10 per cent of the population have some form of problem with literacy and the ESA50 being a key part of the ESA claim, the Review agreed that this was something worth exploring in more detail. (Dyslexia is mentioned by name.)

There is no specific mention of autism, which affects all forms of communication.

More worrying is the finding that "There does not seem to be a significant group of claimants who were unjustifiably or inappropriately lost to the system." - we would suggest that many people are in fact lost to the system, they dropped out of it when they became adults and are now not know to even LA's. As such they have no trust in the 'system' so they may in fact not be claiming because they are too scared to.

ACT NOW feels that there is nothing in the review report that will positively affect the experience of the Work Capability Assessment any time soon.

We continue to be concerned about the lack of training about autism - something which does not appear in the review, despite the number of cases of adults with autism across the UK. Current statistics show that over 500,000 people have an ASD in the UK. We are unable to comprehend why an autism-specific descriptor(s) cannot be implemented.

Until there is an autism-specific section/descriptor within the WCA  instead of assessing adults with autism under the mental health and learning disability descriptors, this assessment remains not fit for purpose for claimants with autism.

We also question the effectiveness of any further input from the charities (in particular The National Autistic Society) while the DWP appear to be intent on stalling any kind of change that would directly improve the Work Capability Assessment for adults with autism.

ACT NOW has 12,000 supporters across the UK. That is 12,000 adults, parents and carers all living with autism, who do not hang up their hat at the end of the day, many of whom are living in fear. How many people will it take to make our voice heard - should we have a "little patience" or is it time to stop stalling and start listening?

Sunday, 20 November 2011


It's been a quiet few weeks for autism in the news but here's a brief round-up of recent headlines:

Bishops came out to criticise the Welfare Reform Bill - however, they really didn't go far enough as they stopped short of defending people with disability in their criticism:

The NAS issued a statement saying there have been 'new victories' following their campaign for adults with autism claiming of DLA (soon to be PIP) - as with the Bishops, we don't feel NAS have gone far enough:

 Citizens Advice Scotland have called on all political parties to re-affirm their commitment to the principles of the welfare state:

Keith Duffy has quite his high-profile role in Corrie to spent more time at home with his son and daughter, who is autistic:

Anna Kennedy highlighted the scandal of the bullying autistic children face in mainstream schools during anti-bullying week:

Peterborough County Council approved a new school for mainly autistic pupils:

Sadly Suffolk County Council announced £50m cuts, £15m to come out of the adult social care budget - this is very worrying news:

And to end on a positive note:

Rafa Benetez opened the new Wirral Centre, which will provide much needed support for adults and their families in the Wirral and across other counties:

More next week - we hope you've had a good weekend!

Sunday, 6 November 2011

Read all about it!

This week saw the broadcast of Panorama's "Britain On The Fiddle", which has caused much controversy. What did you think of it? If you missed it, it's still available on iPlayer:

Research in Tokyo discovered low levels of zinc in 2000 autistic children tested. British 'experts' said it is impossible to draw any firm conclusions from the research:

LBRB blog reported on a study in Sweden about the prevalence of autism in toddlers:

Surrey County Council have finally acted to help a desperate mother with her autistic son, who hasn't been in school after being expelled when his challenging behaviour got too much for teachers. He has a placement in a residential school and is currently being assessed:

The Scottish Government finally launched the Autism Strategy for Scotland. There's a long way to go and there is much of it open to interpretation. They also announced £13.5 million to back up the strategy - we hope that goes into front-line services - too optimistic? Strategy at a glance:

DYSPRAXIA AWARENESS WEEK - 5th to 11th November. To find out more about events and the condition itself, please visit the Dyspraxia Foundation website:

And finally some exciting news from ACT NOW!

We have decided our name no longer reflects who we are and how we are now evolving. So, we have decided we will change our name to Act Now For Autism - look out for our new name, logo's, website AND we'll be starting a forum in the New Year!