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 http://odi.dwp.gov.uk/fulfilling-potential/index.php  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.

WCA Year 3 Call For Evidence - Our Submission

Harrington Review - WCA Year 3 Call For Evidence

Question 8 (Organisations)

Communications

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.

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: 

"MY EXPERIENCES OF THE ASSESSMENT PROCESS SO FAR.  

BY YVONNE MOORE, MOTHER OF DOUGLAS,( AGED 22) WHO IS AUTISTIC  

(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 28^th 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 4^th 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.) 

The Paralympics - Hot Potato?

Olympic fever spread throughout the UK earlier this month. Even people who had been adamant they had no interest in the Olympics were carried along on the crest of a feel-good wave by our amazing athletes. Their sheer determination to bring home the good and the feeling that at last Britain had something to feel good about. We were basking in virtual sunshine if not the real thing. Facebook was awash with posts about the athletes, their victories, their emotions and the sense of pride that we were all feeling. More than one person posted that what we were seeing was the best of Britain and we probably were.

Fast forward a couple of weeks to the Paralympic Games. The Paralympics should have seen us all standing shoulder to shoulder again being carried along once again by our feel good wave. Sadly for some of us at least the Paralympic Games have been tarred by the fact that Atos, the company employed by the Department of Work and Pensions to carry out the Work Capability Assessment on adults with disabilities, is one of the major sponsors of the Paralympic Games.

Many people with disabilities feel that having Atos as a major sponsor of the games is rubbing salt into wounds. Neither the Olympic nor the Paralympic Games should be political. Sadly the Paralympic Games have become just that.

We cannot blame the Government for agreeing to Atos sponsoring the Paralympic Games but you have to wonder why the Paralympic Association thought that they could agree to Atos sponsoring the games without there being any concerned comments from disabled people. We are being told that we should be feeling inspired by these games when in fact the games are actually making many people with disabilities feel even more threatened than before.

Those feelings were made worse by the fact that David Cameron was allowed by C4 to speak just before the opening ceremony. His words could have come straight out of the Atos handbook. Or did we just think that because we now associate David Cameron with someone who has it in for people with disabilities?

Speaking about the Paralympic games David Cameron said "It's going to change people's minds about disability and it will teach people to ask what people can do rather than what they can't do. The Paralympic athletes overcome disadvantages and then go on and do really amazing things."  

Can we please be realistic about the athletes who are taking part in these games? What we are watching are the elite of disabled athletes. Disabled or not these athletes are no different to elite athletes who compete in any sports. These athletes did not wake up one morning and ask for a place in the Paralympics. Just like the athletes who took part in the Olympics they have been training for years and money has been invested in their training. Money that most disabled people will never have access to.

The majority of disabled people are no more capable of becoming Paralympians than any one who is running for a bus is capable of competing against Usain Bolt. Success is relative to every single one of us and how our lives are playing out. For some people with disabilities making it out of bed every day means that they have successfully competed with their own body and won their race.

Some people with disabilities will simply never be able to overcome their disability no matter how hard they try or how much they want to. We have to be very careful not to make them feel bad about what they cannot do. It is morally wrong to focus on what people with disabilities can do without paying any attention to the things they cannot do through no fault of their own.

Of course we must celebrate all of the things that people with disabilities can do but that does not mean that with a little more determination they could all become fully functioning, fully employed and fully independent members of society. (No matter how much the current Government might want to believe and want us to believe they can.)

We are now in a situation where adults who are receiving Employment Support Allowance are terrified of saying that they can do anything without fear of retribution from Atos when their time comes to be assessed. Next year we will see adults with disabilities having to be assessed twice when Disability Living Allowance is replaced by PIP. Many will find themselves being assessed for the second time by Atos.

Now is not a good time to be living with disability, either for those with the disability or their families. This is especially so if the child or adult has a hidden disability. While the Government continue to profess that all things are possible for everybody including those with disabilities if they just try harder, and while the media happily publish story after story about benefit scroungers and malingerer’s, people with disabilities are the ones left trying to survive the continual onslaught from the Government, the media and members of the public to.

Campaigners continue to campaign against the Work Capability Assessment stating that it is not fit for purpose. The assessment cannot to accurately assess the functionality of adults with autism and other disabilities.

We should not be using the athletes who are competing in the Paralympics as a measurement or yardstick of success and triumph over disability. Nor should we be holding them up as an example of what people with disabilities could do if they put their mind to overcoming their disability.

Society now views disability in a very dim light. Will the Paralympics do anything to alter that view or perception of those who we should really be protecting?  Act Now for Autism thinks not. In fact if anything we think it could cement the view that people with disabilities could be doing more for themselves instead of simply sponging off the state.

There is speculation that the Team GB athletes who are competing in the Paralympics hid their Atos branding on their passes during the opening ceremony of the games. It would be lovely to find out that they did in fact do this in support of those who like them are facing a lifetime of disability.

The debate about the Paralympic Games will probably continue throughout the games, which is extremely sad when the games should really be a celebration of those who have trained so very hard to compete in.

When the celebrating appears to be at the expense of other people with disabilities, it does leave a bitter taste in the mouth.

It's Not What You Know...

Champion: (n) a person who has defeated all opponents in a competition or series of competitions, so as to hold first place. (v) Support the cause of; defend.

Across the UK the term ‘champion’ is a new buzz word. When New Labour were in power we had a Tsar for everything, under the Coalition Government champions of this, that and the other are popping up everywhere: mental health champions, carers champions, champions of justice, autism champions and Mary Portas as champion of the High Street!

It’s clear the old pal’s network is alive and well across the UK in politics and through the fringes of political life when it comes to who gets to be a champion. It’s not what you know but who you know.

The decision makers like to let us think that legislative changes often come on the back of public consultation or by us speaking to them and sharing our experiences. Yet policy change rarely is following the opinions of responders or by politicians listening to us but rather it is shaped by ideology, party policy. 

This week in Scotland, the Shadow Labour cabinet announced the appointment of a carer’s champion. The champion is someone who has developed close links with the party leader in the last year, she wasn’t nominated by party members or by a carers group/organisation and neither was she voted for by a group of peers or by a ballot.

Sort of stinks doesn’t it given her close links to the party? Carers are more stressed and anxious than ever before with cuts across the board and changes to ESA rules, Tax Credits and DLA all looming. The carers champion is obviously a carer herself but has no background in politics or in depth knowledge of policy making. She will need to hit the ground running if she is to represent the 660,000+ carers across Scotland – or to “support...defend” carers. Can she alone speak for those carers; can she really have any idea what it’s like to live their lives? Does she really have the ability to ensure the message is heard and show insight into the policy and legislation impacting on the lives of those who care for someone – does the Scottish Labour party care if she can?

The ruling SNP party have also declared that all LocalAuthorities under its control will appoint a carers champion, an "officer sitting at strategic level". (Whatever that means!) All carer’s champions will have to rely heavily on testimony from carers themselves, carers who have been sharing their stories with politicians for years already, stories which often appear to fall on deaf ears. 

In England many council’s have volunteer carers champions too, to help "shape policy at local level".  

Do you know who your local carers champion is? 

Let's not forget, there are an estimated 6.4 million carers across the UK, saving the country £119bn per year in care costs, equivalent to £13.6m every hour.

So now there are middle-men, more middle-men once you factor in PA’s and admin staff scanning and vetting messages.  How then do we actually communicate effectively with the people we vote into such an office and who do or will they actually listen too?

In Scotland, a carers champion was mooted to be about scrutiny of decisions at the highest level and the impact on carers. Somehow this seems to have been misunderstood or interpreted in different ways in the case of Scottish Labour. The original idea was for MSP’s to do the work, getting politicians thinking differently, thinking about impact of decisions in education for example on families, which in turn might place greater demand on social care or health - like the model used in England. The point of a carers champion was to put someone with an interest in carers at the heart of policy making – but can one 'lay' champion influence the very heart of policy making? 

The politicians will be able to say “you got your champions and your carer’s councils and parliaments like we said you would”. The question is what will change as a result of these initiatives? 

The jury is out. As yet many of these posts are yet to be filled and with budgets being slashed will the lives of the “unsung heroes”(carers) really be at the top of the agenda when budgets are decided?

Across the country we hear from people on their knees, who haven’t had a carer’s assessment and are in utter despair before any help is offered, if at all. The politicians know this is happening already but hey, we have carer’s champions now so everything will be okay! 

All of this is costing money, at a time when valuable services and charities are disappearing. Okay so we have to give this a chance but campaigners nationwide will be watching, very carefully.