Tourettes Action
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Speak My Language

Speak My Language

As there are quite a few people out there who are feeling somewhat overwhelmed by the thought of writing their own response to the current draft of the Personal Independence Payment assessment criteria, here’s a few words of wisdom from a woman who frequently dabbles in the dark art of writing such pieces. So go and make yourself a cuppa, breathe deeply and remember, you’re not alone.

Hopefully you should now be armed with a cup of tea; I’ve been doing this for about 3 years now, that’s being the voluntary policy officer for Tourettes Action. When I first started I did feel like a fish out of water, trying to decipher white papers, green papers, this report and that report, attending meetings with charity types, often being the only person with a disability in the room. The fact that I am affected by the condition that Tourettes Action supports and advocates for gives me an edge because unlike most of the other people working for disability charities involved with the policy side of things I’m directly effected by the majority of these issues. Also I will be trying to inject a bit of humour into this task as having a bit of a giggle can help lighten the load.

The first thing you need to do is try to imagine yourself considering buying a new car, the emphasis is considering, you’re just toying with the idea at this point. Whilst out and about tending to business in Albert Square you stroll past Frank’s Car Lot and you spot a car that may suit your needs and out from his portacabin emerges Frank, (Frank represents the government, he is trying to sell you a “cut-and-shut” car, and this car represents the Welfare Reform Bill). Frank gives you the banter, pays you loads of compliments, MOT, 12 months tax, “tell you what darlin’ I’ll knock 50 off for ya, one careful lady owner, how’s that for a deal?” Initially this looks like a good idea, but a second hand car like the WRB needs a good going over. To the un-trained eye Frank’s bargain car looks like any other little round around, but with loser examination things aren’t as they seem, what seems like an excellent idea to the Daily Mail and Sun reading members of the population the concepts behind the WRB is an excellent idea but like the cut-and-shut car in parts it’s legality is questionable, it’s downright dangerous and it’s just an exercise for the government to start to break up the welfare state and make some savings to boot.

Your response to the government with regards to PIP could be comparable to having a conversation with Frank about his car, you need to be diplomatic about it and be constructive with the points that you make. I was very pleased to find (if you have the notes to the PIP consultation) that in Appendix D Tourettes Action have been listed as one of the organizations that submitted a response to the previous draft, so maybe they have taken on board some of what I said. It is also important to tell them about the positive parts of the consultation, rather like telling Frank that you like the colour of his car.

So lets get down to business – you need peace and quiet, the document, a highlighter pen and a pencil. Here goes.

1.Scan. Have a quick speed-read, this is just to familiarize yourself with it and some of the many points, have your pencil at the ready, and ready to mark any parts which you feel are important or leap out from the page at you. Some things will leap out at you, in the first draft there was a horrifically inhumane point made about washing from the waist up only, luckily this has now disappeared but initially Bo Selecta’s Mel B popped into my mind “I’m chuffing out a right pong!” Even dairy cattle get hosed down from behind!

2.Proper Read. This time, take your time, consider the points made and think about how they are relevant to your disability, don’t just think about yourself but think about how it affects others with the same or similar disability also, for example Tourette’s syndrome is a spectrum disorder they way it affects me is very different to the next person with TS. Think also about how the points made apply to different situations. Also beware of the language – the consultation isn’t written in English, it’s written in Jargonese. Jargonese is an ever-evolving language that is becoming more and more commonplace, don’t be too scared by it, it’s a bit like watching “Pobl-y-Cwm” , you might need to watch it a couple of times to get the plot and understand what’s going on. Make notes, I make notes all over my consultation document.

3.Research. Do some sniffing around, go online and read any articles or blogs relating to the PIP consultation, ask friends, neighbours, people in the pub, find out what the general opinion is. Also due to the language that they use somebody may have come across something that you haven’t. For example, at this point in my previous response I forgot about passported benefits, so for example many people with TS need Access to Work to remain in their jobs, to be eligible for Access to Work you would need DLA, if those with lesser needs won’t get PIP they would loose their Access to Work and as a result have to give up their jobs. DUH!! How did I miss that one?

4.Plan. Rather like writing an essay a response will have a structure, so I essence the response can be broken up into an “introduction” this would include a bit about your disability and how it affects you, also some info about how DLA helps you and others with the same disability. Also include something positive about the plans, such as the “DWP are inconsistent with regards to DLA applicants blah…blah.” “The main bit” luckily with the PIP consultation it’s already broken up into sections so again reflecting on your notes, go through each assessment criteria individually writing at least a paragraph for each. The “extra bit” look at the bigger picture, such as the assessments by a private company, be concise and diplomatic, you also need to think from their perspective, such as the fact that it’s “creating extra beurocracy which will I turn create extra expense that in this current climate we can ill afford blah…blah..” maybe throw some figures around relating to the cost of ESA appeals? “The conclusion” this where you can reiterate some of the important points you have made elsewhere in your response, again point out the good points as well as the bad and give some suggestions about how improvements can be made.

Remember, don’t rush and when you have finished pass it on to somebody to read through it. I always do this, despite running it through the spelling and grammar check there still maybe parts that read like complete gobbledygook so naturally my boss will read through it before it’s submitted.

And of course lastly good luck, if you have any questions please don’t hesitate to get in touch.

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