ATOS – How often do you behave in a way that upsets other people?

I’m filling in G’s “limited Capability for Work” questionnaire. This is for the transfer from Incapacity Benefit to Employment and Support Allowance (ESA)

I’m swearing…. a lot!

The air around me has been blue with expletives for days now and I’m raging in a way I’ve not raged for a long time! I need to keep stopping to calm down, walk away, put it back on the shelf and leave it a while before I carry on. I’ve done this so many times it’s taken me 5 days so far to attempt to fill the bloody thing in and I’m still not completely finished.

Aside from the obvious fact that the DWP have sent this questionnaire to me rather than him, surely giving them an inkling of his limited capability for work, the questions are hideous. It makes the DLA form look well worded and carefully thought out!

I have actually written everything they will need to know in the “about your illness or disabilities” section on page 5. Quite honestly they could read this and not bother to read on…. and I was tempted to fill in the subsequent questions with “please refer to page 5!” but I thought I better play the game!

It reads like this….

“G was born with a rare chromosome disorder called Angelman syndrome. This means he has lifelong profound learning disabilities” … thinking about it I probably could have stopped here with a “go look it up” suggestion! but not wanting to P them off I continued…

“He has no spoken language, communicates only by gesture and by people interpreting his body language and behaviour. He needs the full support of others in all aspects of daily living. G has scoliosis of the spine and plano valgus feet (flat feet and no arches) he wears AFO’s (leg braces) and uses a wheelchair for longer distances and in busy spaces. He has an assessed IQ of under 20”

The cognitive stuff has been pretty straight forward but there are a lot of questions about physical functions e.g. how far you can walk? Can you walk up or down two steps? Can you pick things up? Can you lift your arms high enough to put something in your top pocket? and can you use either hand to:

• Press a button, such as a telephone key pad
• Turn the pages of a book
• Pick up a £1 coin
• Use a pen or pencil
• Use a suitable keyboard or mouse

G can physically do all of these things but he can’t do anything without someone watching out for him or helping him. For those listed above, he could do all of them, but not with any real purpose, understanding or with any real intentional outcome (except for turning the pages of a book and only then if it had pictures in it!!)

Although thinking about it he did call 999 on telephone keypad when he was younger which, by the way, had a pretty cool outcome for a teenager with learning disabilities! He was thrilled when the police turned up…they were concerned when there was no voice on the end of the phone and rushed round straight away. Consequently I got a good old fashioned telling off for letting him use the phone!

He was getting pretty good at cause and affect activities, if I do this, this will happen and I hoped at the time he wouldn’t link the cause of this particular activity to the particular effect it had otherwise it could get a bit embarrassing really…the police turning up on your door step every other day!

Anyway, back to the form…

Question 17 is the worst…it’s taken days on and off (more off than on) to respond to this doozy!

Question 17: Behaving appropriately

“Please tick this box if your behaviour does not upset other people”

What a stupid bloody question this is!! Could anyone really, honestly tick this box whether they are disabled or not! Put your hand up if you never upset anyone! No one? Okay on to the next bit…

“How often do you behave in a way which upsets other people?”

For example, this might be that you are aggressive or act in an unusual way”

       Every day

        Often

        Occasionally

Most of us could probably answer this quite easily in lots of everyday circumstances…    when answering a cold call about PPI’s, when getting a ticket from a traffic warden, when some “jobs worth” behaves like, well a “jobs worth” and when filling in a stupid form for disability benefits…the list is endless… and if I was filling this in for “Victor” the answer would have been easy… “every day”  just ask the local Co-op, petrol station or local dump. Basically, sometimes whether intentional or not our behaviour upsets other people!

Consequentially, I’ve struggled with this one for G. Such an evaluation can surely only be subjective and how would I know whether people are actually upset by his “unusual” behaviour? What the hell is “unusual” anyway? To us G’s behaviour is perfectly natural, usual ….and normal for him.

Eventually, after several rants and expletives! I reluctantly ticked the “occasionally” box and I added this comment

“I hope it doesn’t but clearly some people are ignorant of disability and this means they may be. As his Mother THIS QUESTION UPSETS ME!!!”

I doubt they’ll understand what I even mean by this but I feel better for putting it in anyway.

In the last section “any other information”, I’ve made it pretty clear that G was awarded DLA at the higher rate (in both components) for life at 3 and again at 16 and that he was awarded Incapacity Benefit for life at 18.  I mentioned that I’m his Court Appointed Deputy under the Court of Protection, meaning that the Court judged that he lacked the capacity to manage his own affairs. I can’t really think of anything else to add….except perhaps “refer to page 5” so I’ve left it there, hoping I’ve given as much detail as is needed so they finally get the picture.

I could rant on and on about the ridiculous need to reassess someone like G (go back to your records For F’s sake!!)  I could rant about the money this is all costing…I’m a tax payer too…  blah, blah, blah, but this Government clearly doesn’t care about that. All they care about is getting people off benefits and catching benefit cheats. And, whilst I wish they’d catch benefit cheats too I resent being made to go through all this again, I really do. I hate that it’s caused me so much stress (and that it’s caused me to swear so much, so often since this stupid questionnaire arrived!!)

I’ll be glad when I’ve finished, popped it in the post and I can then sit back and wait for the verdict. I’ll be glad when I can get back to thinking about G the way I (and we as his family) always have and not feel forced to define him by what he can’t do physically or mentally. I’m grateful that G has no comprehension of all this crap going on around him and he’ll never know or understand what negative things I’ve had to write about him. I’m extremely grateful that life for him goes on as it should and that the people around him love, like and value him for who he is in spite of his incapability to work.

I like to think that I’m a positive kind of person and I promise my next blog post will be more upbeat and cheery. I know we have to jump through these hoops in order to get what we need for him but it’s all so draining and depressing… I’m peed off that I’ll no doubt have to do it all again when he transfers from DLA to the Personal Independence Payment (PIP) …As for right now, well let’s just say, my mantra for this week is … “Don’t let the Bas***ds grind you down!!