Monday, 17 September 2012

ANFA Response To Proposal To Scrap GCSE's

On the day that the Government published two documents setting out its approach and commitment to enable disabled people to fulfill their potential and play a full role in society  they also announced that they intend to scrap GSCE’s and replace it with a rigorous exam system. GCSE’s will be replaced with English Baccalaureate Certificates in 2017, if the current Government is re-elected.

Michael Gove told MP's that GCSE's had been designed "for a different age and a different world".
He said the changes would modernise the exam system "so we can have truly rigorous exams, competitive with the best in the world, and making opportunity more equal for every child".

Act Now For Autism do not agree that creating a system that relies solely on a rigorous exam system can ever provide a child with autism with an equal opportunity to succeed.

At a time when this Government wants to concentrate its efforts on what people with disabilities can do as opposed to what they cannot do, they are proposing to roll out a system that will, for children with autism, make it much harder for them to prove what they can do.

It is well documented that autistic children often struggle in exam conditions as they often suffer from extreme anxiety when they are expected to perform in an environment that is alien to them and under very stringent time restraints.

Being unable to gain marks for course work produced during the two school years that lead up to an examination will leave pupils with autism at a distinct disadvantage to other pupils.  

Reasonable adjustments will have to be made otherwise the new system will discriminate against children with autism as well as children with other neurological conditions.

At the moment there are only 15% of autistic adults in the UK who are in full time employment. Act Now For Autism is very concerned that the new English Baccalaureate Certificate will make it even harder for children with autism to succeed into secure employment.

Saturday, 15 September 2012

WCA Year 3 Call For Evidence - Our Submission

Harrington Review - WCA Year 3 Call For Evidence

Question 8 (Organisations)


Effective communication continues to be one of the biggest issues for adults with autism, who often have complex communication needs. For this reason Act Now For Autism is committed to campaigning for the offer of an advocate to be made to every adult with autism at the first point of contact from the DWP or JCP.

The assessment process and how effective communication with autistic adults is a postcode lottery. Some areas appear to be more understanding than others. Some of those who are making contact with the adult with autism are insisting on speak to the adult even when there is a parent or carer present who has been registered as the appointee of the adult. Refusing to speak to a parent or carer effectively denies the adult with autism the right to communicate effectively.

As we have stated before adults with autism often have a method of communication which is most effective for them. For some adults that method of communication will not be via the telephone. Adults with autism have told us that they feel under intense pressure once they realise that the call they are receiving is to confirm that the process of assessment has officialy commenced. Despite the fact that what is required of them is what could be considered to be basic communication skills, adults have told us that their levels of anxiety elevated very quickly.

One adult with autism told us that during the four years he has been communicating with the DWP they have never once done what has been asked of them. Despite him and his social care team informing the DWP in writing about the adult’s preferred method of communication the DWP continued to communicate with the adult by letter. He told us that from the moment he sees the brown envelope his levels of anxiety increase and this affects his ability to function.

One adult told us that they find ‘all such people confusing’. They no longer see doctors or anyone like a doctor or professional because of the extreme stress that having to answer question places them under.

One parent told us that JCP rang to speak to her son and asked if they had received a letter informing them that the process of migration from Incapacity Benefit to ESA had begun and that they should expect to receive the ESA50 questionnaire soon. The letter had not arrived. Fortunately the parent took the call and was therefore able to deal with the fact that the letter had not arrived in a calm manner. She told us that had her son taken the call they would have been living on red alert for days.

After receiving the ESA50 questionnaire one adult told us that they started wetting the bed and they started having seizures again, something that they had not experienced for some time. The amount of seizures increased during the time that the adult had to wait for a face to face assessment.

One adult whose social worker arranged to come and speak to them about their forth coming assessment had to cancel the meeting because the thought of having to talk about what was going to happen to them during the assessment was just too much for them.

Face to face assessment

The face to face assessment will always be difficult for adults with autism and also continues to be something of a postcode lottery.

We have heard from adults who have been allowed to have an advocate present and to help the adult to communicate effectively. We have also heard from adults who have been refused the support of an advocate during their assessment.

It is essential that adults who could have the support of an advocate during their face to face assessment are allowed to do so.

Decision Making

There appears to be no consistency in how long it takes for a decision to be reached following an assessment. We have heard from parents and carers who are having to contact the DWP themselves on behalf of their adult child to find out if a decision has been reached.

Question 11

What one thing (if any) would you change about the WCA to make the system better for people claiming ESA?

Act Now For Autism does not believe that the WCA in its current format is fit for purpose for adults with autism. We do not believe that tweaking the descriptors will be enough to ensure that the complex nature of autism is accurately assessed.

We believe that there needs to be specific descriptors for adults with autism.

Effective communication must surely underpin the WCA otherwise how can an assessor be sure that they are making the right recommendation following their assessment of an adult with autism?
What adults with autism might say is not always what they mean. They may misunderstand questions that they are being asked. They find it hard to answer questions especially if they feel that they are under pressure to produce a response to a question. They will fail to pick up on inference and assumption and all non-verbal forms of communication. For example, when asked, “Can you travel to work on a bus?”, they may say yes, but not explain that they can use only one bus route, or that they can only travel to work by bus with the help of a support worker. (and that it may have taken years to be trained to do this task) They might not think to add that if the bus is late or if the bus is not the right colour, despite it having the right number, that they would continue to stand at the bus stop waiting for ‘the right bus’ to arrive.

 People with autism face problems with communication that other people who do not have the right experience of the condition would not see.

If a WCA was being carried out on someone for whom English was not their first language they would be given access to an interpreter to ensure that they were able to communicate effectively throughout the process.

The communication impairment for someone on the autistic spectrum is even more complex than simply speaking in a different language. They require specialised skills in addition to those that would be expected from an interpreter. At the moment they are not even being offered the services of a specially trained advocate at any point during the process.

It is essential that the person who is carrying out the work capability assessment can communicate effectively with the adult they are assessing. Unless the person has been specifically trained to communicate with people with autism there needs to be either someone who has to advocate for the person or someone who knows the person well who can act as an advocate.

The time lapse between the first contact made by Job Centre Plus and the actual assessment is far too long for someone with autism. We understand that some people are having to wait up to 13 weeks for an assessment. This is placing people with autism under a huge amount of stress and raising their levels of anxiety to an almost unmanageable level. Some adults are simply not coping with their levels of anxiety and are having to seek professional help and support.

This in itself is unacceptable but Act Now For Autism has heard from several adults with autism who after finally completing the lengthy process of assessment have being informed that they will be reassessed again within 4 months of the final decision being made. This is simply cruel and intolerable and needs to be stopped now!

In July 2010 Carole Rutherford co-founder of Act Now for Autism asked Tony Attwood, who is considered to be one of the world’s leading experts on autism,  questions about autism and mental health issues. Carole asked about the necessity for correctly trained professional to deal with people on the autistic spectrum and how anxiety could impact on the lives of people with autism. In his response to Carole Tony Attwood said

‘We now recognise that there are actually constitutional, that is neurological reasons, why those with autism spectrum disorders are prone to mental health issues, predominately anxiety. Constitutionally they are natural worriers who find it very hard not to catastrophise panic and worry about what things are going to occur.

Mental health issues can arise due to the frustration of not knowing how to solve a problem.

The experience and expression of emotions is a major problem for such individuals which are not simply caused by the environment. However the environment can make it worse. "

The WCA is being carried out in an alien environment and is presenting adults with autism with a very real problem, one which they feel is they have no control over whatsoever. This is resulting in extreme anxiety and frustration leading to mental health problems.

It is therefore essential that the WCA not only reflects the complexities of autism and how it can impact on the life of an adult with the condition, but also that it is carried out quickly keeping the time that an adult with autism has to 'catastrophise panic and worry' about the outcome of the assessment to a minimum.

The fact that there are neurological reasons for the extreme anxiety that adults with autism suffer from must taken account of when an adult with autism beings the assessment process. To actively ignore this must surely go against the Equalities Act (2010) which clearly states that reasonable adjustments must be made for people with disabilities. The Act also states that it is it is unlawful to discriminate against disabled people yet adults with autism are being discriminated against by not providing them with an auxiliary aid, which can either be mechanical or in the form or a person, to ensure that they can communicate effectively throughout the process.

At the moment adults with autism are telling Act Now For Autism that they feel as if they are being punished for having autism and that they would rather die than have to ever endure an assessment again.

Because autism is such a complex condition we believe that it is impossible to accurately assess a person with the condition without first fully understanding how that condition impacts on their lives. The only way in which to resolve the numerous issue with the WCA and autism would be to have a specially written descriptor(s) for autism. The WCA has to take into account the many facets of the condition and make the reasonable adjustments that are necessary when trying to assess the functionality of someone with autism.

Friday, 14 September 2012

My Life With Autism - Applying For ESA

Act Now For Autism

Continuing our My Life With Autism series of guest blogs, Yvonne has taken the time to write a piece about receiving the call from the DWP for her son to apply for Employment Support Allowance and potentially attend a Work Capability Assessment: 


(I  have abbreviated Questionnaire to “Q” in the following.)

I have been dreading this for over a year, knowing it was going to be mentally demanding, and knowing that the whole system is flawed.

I feel very strongly that those with conditions such as autism, should not be required to be assessed, so I feel so ANGRY that my son has to be when it is so obvious that he cannot work. All they had to do was contact Social Work who can tell them that Doug receives 1:1 support on a daily basis, and that the huge majority of it is autism-specific support. I feel so angry that I have to justify my son’s disability again. It is just so incredibly unnecessary, and it is actually painful, and depressing.

Evidence of the person’s condition should be adequate, without having to fill in such a complicated form.

I have also been dreading it because I have heard of people being called for WCA, when it is so ridiculously obvious these people could never work.

Being Doug’s Legal Guardian, to me is enough proof in itself, that Doug is unable to work.

Anticipating the dreaded envelope dropping through the door has been so bad, I became very fearful of the post, and my heart would skip a beat, EVERY SINGLE time we received post. After a year of waiting, I first received a phone call from DWP, checking my, and Doug’s details – address etc. The caller was obviously just going through a check-list. He advised me I would receive a questionnaire through the door within a few weeks.

On Thursday 28th June, I came home after a pleasant afternoon,( watching my son being presented with a certificate from Drake Music), to find the dreaded envelope lying on the door-mat. The mood of my pleasant afternoon was completely destroyed.

My reaction was total panic, and I could hardly breathe. I have been unable to work since Doug was born and my husband only has a tiny pension, so we are utterly dependent on Doug’s benefits to enable us to care from him properly. Losing this, would probably mean he would have to go into state- supported accommodation, far too early and without adequate preparation.

I phoned my social worker, and despite her wanting to help me, she couldn’t come out, as she was going on holiday and by the time she came back, the date for returning the questionnaire would have passed. They give you four weeks to return it, which I feel is not enough time to gather evidence from the professionals involved with Doug, and you have to have good reason for not returning it in time. My social worker said she would get their Welfare Rights team to help me. BUT when she phoned them she was shocked to convey that they had been inundated with requests for help since welfare reform started, that there was long waiting list’ and they would not be able to assist me before the ‘return’ date had expired.  She apologised profusely for this. She did manage however to write and send a supporting letter before she went on holiday, for which I am grateful.

I phoned Caroline at Scottish Autism, who had been out for one visit already – this was a referral via PASDA, and who after listening to us describe Doug for hours, and meeting him, said Doug was very typically autistic. She was extremely keen to help as she knew how incredibly important it was.

We scanned every page of the Questionnaire and e-mailed it to her, so she could prepare answers in the technical language so needed to describe his behaviours. It would have been a horrendous task to do this on our own, as we don’t have the relevant technical language required, and would have just probably sent a huge amount of examples of how Doug’s autism affects him.
She arranged to come out on the Wed 4th July, which was the Wed immediately after I received the Q in the post. She stayed for 3 hours, going through every question in fine detail, and asking for examples of Doug’s behaviour to include in her explanations. She then worked solidly on our case, on the following Thurs and Friday, and even though she finished up on the Friday for annual leave, she continued working through the weekend and following Monday, e-mailing parts of the Q at a time to let us peruse them carefully.

On the Monday evening, she e-mailed the final part, and said she would be available until the Thursday, before she went on holiday, if we wanted to contact her.
It took us the whole of the following week to go through her e-mail, extracting parts required, (she said she had obviously written too much, and to exclude parts we thought weren’t relevant) and then adding in our own anecdotal descriptions of how Doug’s autism affects him.

Also, we had to practice hand writing  our info, into the small boxes provided, on a ‘practice’ Q. We had to use tiny writing. It took us a whole day. Then my husband noticed on part of the form that we could fill in the form on-line, and then down-load it. It was not made immediately clear that this was an option, and in our opinion, it should have been stated clearly in the covering letter. We wasted a huge amount of time and effort trying to hand-write it all in the boxes. For those having to use the paper copy, it is obvious that the boxes are just not big enough to include enough information.
It WAS made clear however that you HAD to use the envelope provided,  not any other envelope.  This envelope is NOT A4, but A5. This is, we feel a deliberate ploy to limit the amount of documentary evidence you can include with the form.

We eventually on the Thursday evening, finished completing the form, using Caroline’s info, and our own added examples re Doug. We printed it out.

It became evident, at that point that we were not going to fit ALL the pages, plus added evidence, into such a small envelope, so we printed it out AGAIN, turning each individual page over as it printed, and printing on the the other side too. This halved the pages from 20 to 10.

It then said at the end of the Q, that Doug MUST sign it, if he was at all capable. I forgot to prepare Doug for this, and he became very agitated, and his face went red. We had to have a practice first, and then he signed it (pretty illegibly). I had to complete the form for him, and state why I was completing it on behalf of him, and who I was – therefore why I couldn’t then sign it on behalf of him too, is complete madness.
We also feel Q 15 is totally flawed. The first part asks, “Can you leave home and go out to places you know if someone goes with you?” The options are,  ‘NO’,’YES’, &’ IT VARIES’

 Then it asks, “ Can you leave home on your own and go to places you DON’T know?” The options are ‘Usually’, ‘Not very often’ and ‘It varies’. It does NOT give you an option of “NO”. So I didn’t tick ANY of the options, and explained why in the box below. Is this a ‘trick’ question? Seems to us it is, as some claimants would just feel they must tick one of the options offered.

I then copied my Legal Guardianship Order, the supporting letter from my Social Worker, and a letter from head of LD service dated 2008, stating that Doug has severe autism and requires intensive support needs.

As the printed out Q was now on both sides of each paper, we stapled it together in ‘book’ fashion, and added the accompanying documentation.

We delayed sending it off, as for the whole time, we couldn’t stop adjusting it, always thinking of new things to include, to make our case stronger. We’re ready to post it, but as we changed the page where Doug signs, we will have to ask him to sign it again – this time I will warn him first.

For people without lap-tops, or possessing the ability to use one, and without printers, the onerous task of completing this form must be even harder. We are lucky to have had the expert, and invaluable support of Caroline at Scottish Autism. It must be even more horrendous for those who don’t have access to a relevant professional to support them through this.

We now feel utterly stressed and exhausted, and so angry, that we have to justify my son’s autism all over again. All DWP had to do was take into account all the one-to-one support Doug receives on a daily basis, the respite package I receive, and the taxis to take him to all his daily placements -  ALL financed by Social Work –( they would NOT find this if it wasn’t necessary) & my Guardianship Order. If they had done this, it would have avoided all the above work.

BUT it still isn’t over – now we have the horrendous  wait to see if they deem it necessary for Doug to have a WCA. If they do, I will doubt whether ATOS will have actually read any of the form, and accompanying documents, and they just call every claimant for a WCA as a Government tactic.  Doug should be put into the Support group and automatically receive ESA. If he doesn’t, then I will have to go through an appeals process, (And I hear the DWP are now under no obligation to do this in any set time?) And meanwhile Doug receives no benefits. 

I don’t want to wish to go into any medical details, but my health has suffered due to this – I was, and still am, sick with worry. 

I am not surprised people have committed suicide over this." 

(**In the time since Yvonne wrote this, she has contacted the DWP who were unable to advise what decision had been made and were quite unhelpful. Yvonne called Atos directly who confirmed to her verbally that they were recommending Douglas go into the Support Group without having to attend a WCA. The DWP is yet to confirm this decision.)