Well at the very least I’m not very happy; in fact I’m quite worried. Being the family thicky I’ve been slowly ploughing my way through the recently published coalition white paper “Universal Credit: Welfare that works” (apologies for being a slow reader). I quite horrified at some of the plans that IDS (sounds like a stomach condition) has laid out, one in particular leaps out off the page at me. I’m all for looking for a job (been there, doing it, wearing the T-shirt) and in this present financial climate and pending cuts in the public sector, jobs are a bit thin on the ground. I’m all for applying for jobs (my CV and countless application forms line many a waste paper basket) and I’m all for job interviews (I’m there already!) …but …here’s the big but…your average DWP employee who’s sitting there advising you on jobs that you could apply for is not trained in how complex neurological conditions and co-morbidities could effect the choice of job you choose to apply for. I have had some very interesting suggestions put forward to me including part-time work (they should know full well that I would need to work at least 35 hours week to make ends meet). Would turning down these inappropriate roles warrant a sanction? (Losing JSA payments for up to 4 weeks) I have found it hard to articulate to the advisors at my local job centre what I can and can’t do, it’s quite obvious to the lay person that I have TS, it’s quite obvious to the jobcentre advisors that I have turned up to sign on. (“We have a customer service job that you might like,” - I wouldn’t mind a call centre, but would they mind me?) And that’s just trying to tell them about the more obvious problems I might face, I haven’t started on the other problems such as my very short attention span, memory problems, poor organisational skills etc, etc…… They say in the white paper “advisors will ensure that the requirements they place on a recipient are reasonable for that person, taking into account their particular capabilities and circumstances.” I sincerely hope that they do, I would hate to lose my JSA because someone didn’t take on board what I’ve told them about my TS.
These sanctions are quite scary – 4 weeks without JSA! What about the “safety net”? I hear you ask….here it is hardship payments will be replaced by loans! ….and how do you go about paying back these loans…well, it’s not their problem. I feel a crime wave coming on.
There’s more in this white paper so please watch this space and please, please, please tell me what you think about these plans and how it will affect you as I’d love to include your points of view in my “official” response for Tourettes Action.
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catherinem
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well you put it so elequently Katherine ian duncan smith rattles on about sanctioning people especially the weakest and most vunerable people in our society. Get a Job he rattles on about non stop yet, there are no jobs Why ? well its not hard to work out that 90 per cent of jobs in Britain go to immigrants with the encouragement of our government. Also there are not many jobs to be had toomany people chasing after too few jobs the cake is getting smaller but there are more and more people in Britain wanting a piece of that cake.And as you say you wouldnt mind doing a call centre job well your right in saying would they mind you as i have found with my Charlie who has Tourette's people discriminate against him because he has Tourette's Going back to David Camerons TV debate he stated he would not attack the weak Disabled or vunerable yet since he has been in power he has done just that.
I don't suppose you could do me a big favour? When I write my response it does help to have quotes from other people who would be affected by the reforms, I don't suppose you could tell me a bit about how you think these changes would affect Charlie when he leaves school/college. I'll change his name obviously.
Hello Katherine, i hope you are ok and well do not be afraid to mention Charlie by his real name there is no need for a ficticious name. Let me tell you a bit about charlie he has OCD, Tourettes, and dispraxia which is a learning difficulty so basically i will tell you how this affected Charlie whilst attending school he was continiously picked on and blamed for his Tourette's by adult so called intelligent Teachers. He was accused of not keeping still as you well know Tics and motor movements are hard to control. When he ticked with a pencil in his hand the pencil would fly across the classroom as you know its involuntry but, teachers didnt see it that way. He was refered to as being mad by the head mistress. And she was brought to book by me, as my charlie is not mad. I then when on to self educate charlie for 4 years home school. which brings me to this point we are now going to get charlie a special needs placement in a college or equivilant very soon. I have had conflicts with so called specialists health professionals concerning Charlie as i feel i know more about Tourette's than they do and they find it threatning. Plus i fight for the rights of Touretter's Luckily we have now found a specialist Doctor in London that knows what he is talking about. Moving forward the cuts have affected the disabled terribly especially Touretter's the department of health dont even recognise Tourette's as a disability. when you and me know when people have severe ticks its hard for them to function as a normal person would do in there daily life. Let alone having to deal with people in public life who are not at all understanding. This Government actions have affected Charlie terribly and i am going to have to go to tribunal for Charlies DLA which i will put the tribunal to task as i am fighting for all Touretter's rights on this matter in the USA Tourette's Syndrome is considered a more serious condition and Touretter's are given more rights which they deserve so in answer to your question yes these cuts have had an impact on charlies well being and care. I hope this response is ok but if you need anymore information on DLA or benefits or how to fight these people please contact me and i will fight for you and i will do this for anybody who has Tourette's Syndrome on a personal note if you are a Touretter stand up for yourself and your rights be strong and dont let people take adavantage of you or your condition. yours Truly John Turvey
I had some excellent news last week - I've been awarded my DLA which I was very suprised about. I wasn't diagnosed until I was 29 and recently I've become progressively worse. I was pretty bad as a teen and I remember sitting in French trying to concontrate on what the teacher was telling me but it was just going straight over my head as I was ticcing so much and then she said to me "Really, Catherine you should try to listen" when I couldn't answer her in french.
But going back to the subject in hand my concerns are there are going to be a lot of ticcers out there on JSA because they have been assessed by ATOS as fit for work, then railroaded in to applying for jobs that are totaly unsuitable for them with regards to their TS and then be discriminated by prospective employers and then finding themselves penalised for not being able to secure a job. (10% cut in housing benefit) This is tough enough for anyone who doesn't have a disability but many of us ticcers also have ASD/Aspergers, I myself suffer from depression, so this added pressure makes for a horrible stressful situation.
Well done Catherine, me and Charlie are very pleased you got your DLA you and all Touretter's deserve it. As you suffer considerably every day with Tick's both motor and vocal. best wishes from charlie and john turvey
Here's an article from the Guardian website that clearly illustrates my point. The man who wrote has ASD and is at the same stage as me, except I'm with Pertemps.
Hi Catherine. It's Jane from FB here. Glad to see you were awarded DLA, seems you took hope after I told you I'd been awarded it. Although mine was for Aspergers not TS. How did you get around the questions? You can work while in receipt of DLA, it enabled me to do one day less a week. I feel much better for it. Hope to continue working - it's not good sitting around all day focusing on how I feel. When I look outside myself it's far more positive.
The Doctor who diagnosed the Aspergers this year, downgraded TS which I thought was wrong. She said TS was a comorbidity of Aspergers, like it was nothing. I'd be interested to know how you managed to get around the questions on the DLA form. 50 years I waited for any recognition of any kind of either disorder! I worked at many jobs, was sacked from many more, the subject of much ridicule and my family thought I was a failure. The only thing that's got me through, is being the bloody minded pain in the arse that I am!
Furthermore, TS usually improves with age it doesn't get worse. Sufferers learn to manage it better. It waxes and wains.
I was pleased to read TS is being discussed on the Westminster Agenda at long last, that has to be positive - so not everyone is out to get us!
Hi Jane, I have quite a few hitting tics, so you can imagine that with a hot pan of water or a sharp knife, so what I got was to help with providing a main meal. It was the low care component. I also suffer from depression too, and when that kicks in I lack the motivation to care for myself, so I'd need Pete to get me up out of bed etc. Everybody seems to say TS gets better with age, but I seem to be getting worse. Also I mentioneds on the form that going out can often be distressing as I have cop and people have been verbally aggressive towards me as I'm often shouting CHAV or FAT.
as they usually centre around his face mainly the eyes. I thought he had an eye problem originally...
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