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.)