Road to Nowhere

Road to Nowhere

Over the last couple of days I’ve been ploughing my way through the initial draft for the assessment criteria of the proposed Personal Independence Payment. I do agree that DLA does need a bit of a shake up as it is often very inconsistent and it depends greatly on whose hands it falls into to get a decision that in your favour. The main problems I have are with some of the bigger issues surrounding PIP such as the assessments made by independent healthcare workers. Already ATOS are recruiting extra staff to get ready for PIP. Currently ATOS get bonuses for every ESA claimant that they deem “fit-to-work” From my perspective the initial task of the DWP contracting out this role is going to cost the tax payer loads as will the face-to-face assessments with the bonus grabbing ATOS. I think that evidence supplied by a claimants GP/specialist/social worker etc would be more than adequate, I would say that my consultant’s understanding of who my TS affects me is far superior to that of an ATOS employee. The other problem that I have, although it doesn’t affect me or many ticcers is that the mobility component will be taken away from those who live in a residential care setting. These are the issues that a bothering me with regards to the bigger picture but lets take a look at the actual assessment criteria.

•Activity 1 – planning and buying food and drink. This is quite hard because as a person who suffers from depression I’d have difficulty with this when at my worst, however the only problem I envisage for a person with TS would be if they also had anxiety problems that would make leaving home to go into a shop difficult. But, they don’t go into much detail here, as when dealing with others, copralalia and non-obscene socially unacceptable comments can make buying food in a shop very difficult. They could mean buying food in general be it from the local shop or on-line.

•Activity 2 – Preparing Food and drink. This one’s a definite. This applies to me as when my tics are bad I’m dangerous in the kitchen so therefore would have to get someone to either cook for me or do most of the task for me. However when I’m at my lowest ebb depression wise, it would be a great effort for me to get out of bed let alone consider cooking.

•Activity 3 - Taking Nutrition. Probably doesn’t apply, maybe only for those with severe tics that making eating problematic and need special aids such as adapted cups, plates or cutlery. Although I am a bit of a messy eater I can take my nutrition unaided.

•Activity 4 – Managing medication and monitoring health conditions. I can be quite scatty and it takes me a while to get into the routine of taking new meds, however when I’m depressed I do need prompting to take my meds. Yes this may be applicable to ticcers.

•Activity 5 – Managing prescribed therapies other than medication. Would this include remembering to attend your appointment with your psychiatrist?

•Activity 6 – Washing Bathing and grooming. This again only seems to apply to when I’m in a depressive state and my personal hygiene goes out of the window. But in this assessment they only seem concerned with being able to wash your face, hands, underarms and torso (????!!!) There may be some individuals whose tics are so severe that makes this task impossible or very difficult.

•Activity 7 – Managing toilet needs or incontinence. Probably not applicable.

•Activity 8 – Dressing and undressing. This would only apply to those with severe tics that can make dressing difficult, but it does have a descriptor for choosing appropriate clothing which is where my depression can effect my choices (or non-choices) a uni friend told me that I once turned up to a lecture in my pyjamas, she thought I was making a fashion statement, bunny pyjamas. I was on a downer, the next day I got lost in Kenilworth, I had no need to go there, I’d forgotten to get off the bus, my friend came to get me after I realised that it was a long walk back to Coventry city centre.

•Activity 9 – Communicating with us. They state here that “we envisage this activity applying to, for example individuals with learning disabilities, sensory impairments, mental health conditions, learning disabilities and autistic spectrum disorders” it goes on to say in the general notes “engage socially means to interact with others in a contextually and socially appropriate manner” I like this, I hope they mean me. Although very much socially aware my copralalia does mean that some of what comes out of my mouth is socially inappropriate, this wasn’t taken into account with DLA.I hope that’s what they mean! Descriptor D seems to fit the bill – but they don’t mention TS!

•Activity 10 – Planning and following a journey. Although they envisage this applying to those with mental health problems (lost in Kenilworth) it doesn’t take into consideration that every journey that I go on has the potential to turn into a nightmare, it just depends on how my fellow travellers or bus drivers/train conductors take to me and my tics. I have encountered some verbal aggression towards me which has left me feeling tearful and scared. On the whole I can plan a journey (when not depressed) and follow it, but however having copralalia does make travelling sometimes quite scary.

•Activity 11 – Moving around. This will apply to those who have leg tics that involve kicking out etc that can make actual walking difficult. However they don’t take into account, different surfaces, gradients or moving in crowed places where a person with a leg tic may accidentally kick a stranger.

Some of the activities and the descriptors I agree with but I think more needs to be made of the fact that TS is often more of a disability than impairment. A disability which is caused by society’s view, an impairment is however an inability to carry out a task, so therefore my cooking problems are an impairment but the fact that using public transport can be difficult for me is a disability due to other people’s attitudes towards me and my TS.

I’m writing out my formal response on behalf of Tourettes Action over the weekend so if you have any questions or would like to add anything please get in touch, I’d love to hear what you think about these proposals.

4 Replies

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  • Firstly, propz for the choice of title.

    Activity 7; I have heard of what I shall call 'bladder tics', so could be applicable for some.

    Two reasons I never applied for DLA and also apply to PIPs: I'm too disorganised etc. to fill in all the forms and don't have anyone to fill them in for me. And because TS is variable and all my other things are invisible disabilities, if I'd had to appeal I couldn't be sure that it would be an accurate representation of how difficult my life is some of the time if they'd caught me on a good day or whatever. So that ain't going to change for an in-person PIP interview. There are times I struggle with most of the things on that list (due to my whole brain stew, but definitely due to the tics at least in part for most of them), and some of those things are downright hazardous for me, but if they catch me on a good day and I'm doing my best to disguise and suppress my tics, none of that would come across.

  • There are organisation that can help you fill in DLA forms. Bladder tics?

  • Ah, I didn't know that there was extra help available.

    Err, I don't know really; I was talking to someone else who had that tic, rather than me having it, but basically some sort of TS-caused incontinence, yeah.

  • The CAB should be able to help you. There are other organisations too like DIAL. DIAL could just be a local thing though.