Tourettes Action

An Email to Dan the Man

An Email to Dan the Man

I’m feeling quite upset, I had a pretty harrowing day yesterday, I have been able to face going to Tesco’s so the food cupboard remains empty, I can’t face going to the village shop either. To top it all yesterday’s blog post which detailed the event that has left me feeling upset and anxious not to forget the ticcy obsessional thoughts featuring my home in flames and then nightmares last night involving my home in flames, has been removed, I’m feeling quite powerless, it was my feeble attempt at trying to regain some kind of pride and after being aggressively verbally attacked and mocked by a lovely polite young man. After I’ve finished writing this I’m going back to bed, I feel so tired and frail after having about 3 hours sleep last night. I think this is one of the reasons why I’m on ESA, I would have needed to take a sicky, all for the cheap laughs for “the polite young man” involved. Really I wish somebody to let me use their shoulder to cry on and give me a call.

As you can imagine it’s been a difficult day, I found it hard to get up out of my pit after such a turbulent night, and I was quite relived to see that my house hadn’t burnt down and I’ve been worrying about the electrics or anything else that could be flammable. I managed to get myself showered and dress eventually and I’ve spent the last hour or so writing this email to my local MP Dan Byles, with regards to a number of issues including the SEN Green paper and the Welfare Reform Bill.

Dear Mr Byles,

I am contacting you with regards to a number of issues that I have given great thought to. I am aware that some of these issues that relate to the Welfare Reform Bill may be to late for you to bring to the forefront as the Welfare Reform Bill will soon be read for the second time in the House of Lords. Some of these topics we discussed at your constituency office in Bedworth some time ago (I was part of a group presenting you with a petition from 38Degrees).

I have recently read the SEN Green paper "Support and Aspiration: A New Approach to Special Educational Needs and Disability" as part of my role as voluntary policy officer for Tourettes Action. On the whole I am quite happy with some of the proposals with this paper however, I do have concerns for those children and young people with TS (Tourette's syndrome) that are on the milder end of the spectrum, these individuals often struggle with their education due to the co-morbid conditions that in many cases occur with TS such as ADHD, Autism/Asperger's syndrome, OCD and other mental health conditions. I myself as well as having TS suffer from depression. We, as an organisation welcome the fact that TS was mentioned in the green paper and acknowledged as a disability, I am also very pleased to here that support will be given to young people up until the age of 25; however I am not happy about the proposals to introduce Supported Internships. I firmly believe that young people with TS or any other disability should have the same opportunities and be treated equally to their non-disabled peers. From my point of view the Supported Internships seems very much a "dead end street" for the young person involved, in theory it sound like a good idea but the scheme could be abused by employers. This idea could be improved if the young person was paid a fair wage for their work, able to gain relevant qualifications and have the offer of a permanent job at the end of the internship. Another concern I have about the SEN Green paper is the use of personalised budgets, before this scheme is rolled out, there needs to be the services available, in these times of council cut backs giving a family a budget to spend on a care package may not be relevant if the services required may not be available.

Back to the Welfare Reform Bill, I have some grave concerns about this as it effects me personally and many of my friends with TS. Currently I am in receipt of ESA (Employment and Support Allowance) and Housing Benefit, as I have been suffering quite considerably from depression. My TS can also be very problematic with regards to carrying out day to day tasks. My TS, which also includes Coprolalia (involuntary obscenities), can be very problematic when out in public, only yesterday I was met with verbal aggression and teasing from a young man in Coventry city centre which left me very distressed. I have had great difficulty in trying to find a suitable job; it is incredibly frustrating and disheartening. Back to the Welfare Reform Bill, I have a great number of concerns.

•The use of private companies such as Primark and Poundland using JSA recipients for the "workfare" 4 week period. As an unemployed person myself, when I am well enough I will be happy to do 4 weeks of work experience, but I hope that the work that I will be allocated will be relevant to my skills base and give me the relevant skills and experience to put me in a better position to apply for suitable jobs, but I* do find it quite unsavoury that these companies can use this free supply of labour for their own ends, I would be much happier if the workfare scheme was only available to the third sector/community groups to benefit.

•The loss of the mobility component of DLA / PIP for people who live in residential care settings. Many people in such care settings rely on the mobility component of their DLA to live their lives, it enables them to visit family and friends and in turn a major part of their independence will be lost. This will affect a couple of young people that I know that rely on their mobility component to get around, including a young woman with TS and Asperger's who attends our group support meetings and activities and has recently started doing voluntary work. If the government's plans were to come to fruition this would leave her isolated, unable to visit her parents, unable to do her voluntary work and unable to come to our (Tourettes Action) meetings and activities.

•The reduction from 3 care components down to 2. This very much affects myself as I currently receive the lowest care component of DLA, this is worrying a great deal many more people with TS, as myself rely on their DLA to pay for some of the extra expenses that having TS can incur. If I loose my DLA this could mean that some jobs I would not be able to do as I may find myself out of pocket.

•The cap on Housing Benefit, not a lot has been made of the fact that these restrictions on HB will not only effect people in London but also HB recipients that live in fairly average houses in other parts of the country. Currently, I need to top up my HB payments in order to meet my rent costs. As I am not working it comes from my ESA, which in turn leaves less money for groceries, gas, electricity, groceries, and travelling (bus or motorbike). What I can envisage as being problematic, although it personally doesn't affect me is the cap on HB for under 35s, which will mean that under 35's will only be eligible for enough HB to cover the rent for a room either in a house share or a house of multiple occupancy. If you think back to your days at uni you will remember that the people who live in shared houses tend to lead a very transient existence (since arriving in Coventry in 1993 to attend uni I have lived in 10 different houses) this situation coupled with the fact that a lot of this type of accommodation is of a poor standard is going to very extremely problematic for many people with TS who are single and also suffer mental health problems.

•The 12 month time limitation on ESA. I have several friends that will be affected by this proposal, when the 12 months is up this will put enormous pressure on their relationships, my friends who are in this position rely on their partners for many of their care needs and life would be very difficult without them, as well as the pressure put on the emotional side of their relationships, this will also put a lot of financial pressure on them, the working partner having to take on extra work or debt in order to meet financial obligations as well as caring for the partner with TS. In the long run this would damage their relationships resulting in divorce thus resulting in more cost to the benefits system ( ESA and HB for dad, IS and HB for mum and children rather than just one lot of HB and ESA ).

On a local level I have other concerns, firstly the closure of the Keresley Village youth club. Over the years this service has been held in high regard by many in the village old and young alike, it's very sad to see it go as it was a great resource for the younger residents. The summer holidays are fast approaching; public transport costs are very expensive for many on the village, so I feel this will create a lot of bored teens filling their time with mischief in the near future. I'm also very sad about the proposed closure of the village library, this again is a great resource and it has been invaluable when I've had problems with internet connections and needed to look for jobs online. The ladies that run the library are indeed an asset to the village and I will be gutted to see their excellent service disappear (or at least £3.10 return bus ride to Bedworth).

My apologies for the length of my email, I thank you for taking time from your bust schedule to read it and I hope to hear from you shortly.

Yours faithfully,

Catherine Mosey

1 Reply

Hi Catherine

Well done on the email to Dan Byles - we all need to keep telling these politicos what its like for all people living on the financial edge.

I am sorry that taking your blog down has caused such distress; the problem with an open forum is that we need to try and balance everyone's needs and on occasion that is difficult.

You had a horrid time yesterday and I am not surprised that it left you feeling wobbly and sleepless. We all know that there are ignorant people in every walk of life and the two who harassed you yesterday were prime examples.

Catherine you are a very competent young woman, funny and caring and I am distressed that their unthinking comments have had such an impact. I am also sorry that taking your blog down has added to these feelings and want to assure you that the complaint wasn't about your feisty defense of yourself but rather the implied judgment about the backgrounds of the two involved. I think that when someone suffers from one condition they are more sensitive to the catagorising of others, even when those others are behaving outrageously.

I do hope that you sleep better tonight and that tomorrow is a brighter day; I shall think of you when we are talking to Sarah Teather about the TA response to the SEN green paper which you made such a valuable contribution to.

With love and hugs