A review of me...

Firstly this post is not an attempt to gain pity, just a record of my experiences!

I learnt my true position in life today. I had a meeting with a bunch of people who ultimately have the power to decide actually how my life turns out. These people were my social worker, a representative from the ILF and my Penderels contact. 

I found out that no matter what I achieve professionally and academically in life, or how affluent I do or do not become, I am nothing more than a statistic. My personal feelings, aspirations and desires do not matter in the grand scheme of things. Those long term goals that any human being may have simply do not apply to me, or anyone it seems, that is in need of PA support. 

Currently I lead a pretty active social life. I am no hedonistic rock and roll legend, but it isn't bad. I have friends and go out and about with them, go to the cinema and gigs, all the usual things a 24yr old does, and due to my disability causing me a few technical hitches along the way, I get to take a PA with me to sort out all the things I can't. 

Sounds great doesn't it, with a little support from one person, I can lead a life that is as close to mainstream as possible, within the confines of a disability. That's how it has been for the last four years, and hopefully how it will stay... However after today's meeting, that might not be the case.

Today's meeting threw up some rather interesting, judging, questionable and concerning points. It seems that my quality of life is all down to the funding and eligibility criteria that are available at the current time! I'm going to start from the beginning so you can see the whole background, and judge for yourself whether you agree with me or disagree with me, as always your comments are welcome.

When I first moved to Coventry into my flat, I was, like all new home owners, skint! I decided rightly or wrongly that I was going to use some of my disability benefit to contribute towards the cos of living, until I found my feet so to speak. I did, and it was all working out well, I had some PAs which were funded by the local social services and Primary Care Trust (PCT). Life was peachy and it all worked, I was living the dream, and independent disabled person, living in their own place and in gainful employment. 

Now this continued for a while, until I was strongly advised to apply for funding from the Independent Living Fund (ILF). This is a fund that can help out social services and PCTs with they costs of a care package (what they call your PAs).

Now the catch with ILF funding is that you have to make a contribution. They assessed this for me and at the time, as I mentioned earlier I was skint! Now I can see quite fairly, that the contribution is covered but the disability benefit, but this was contributing towards the cost of living, so I declined the offer, but was willing to re apply when I was earning enough to be able to contribute. I didn't see the point of contributing for support in a home that I cannot live in because I can't afford to live there! So as I said I declined the offer. Then time passed and back then was suddenly now.

Now is a different story. I am working full time and can afford the contribution that I would be required to make to the ILF. However there is a small problem (that I am waiting to hear the resolution of, but it doesn't look good) and that problem is something the ILF call the three month rule.

The three month rule is something that the ILF instigated, I assume, to stop authorities making claims just because their budgets are running a bit low. In a nutshell the three month rule is this. If an application is made by an authority to the ILF and it is turned down, or is refused by the client, or doesn't come into place for whatever reason, you have three months to re apply. After that three months the ILF is very unlikely to be willing to fund anything because it sees the fact that the social services department has paid for the last three months and says that this is a commitment that the Social Services department has made to the service user (me).

So as you can imagine with my application over a year and a half ago, the representative from the ILF said it was doubtful, and that they would have to check with their manager. If a contribution from the ILF doesn't materialise I am going to have problems!

I asked the killer question, what happens if the ILF funding doesn't come through? What happens to my current care package? 

Let me tell you I wasn't too happy with the answer. 

If the ILF funding isn't available, then my current care package will have to be reassessed against the new eligibility criteria. Currently, Coventry social services are only funding the "critical" and "substantial" needs. Neither of those categories include any type of social life. 

As you can imagine this is not a prospect that fills me full of optimism and cheer. 

If there is very little support available to me at the weekends then how do I maintain my current lifestyle. Through no fault of my own there is the potential of me being forced to stay in at the weekends because there could be a bedtime curfew. If you only get assessed as having a critical need that means you need to be helped into bed, that will have to be done before 10pm as that is the end of a "care" day.

I don't think this is going to work do you??

So that is the position I am in at the moment, waiting for a decision from the ILF and if that doesn't turn out in my favor, waiting for a reassessment of my requirements where I am going to have to fight tooth and nail to keep the current level of support that I have to enable me to maintain as near to normal lifestyle as I can...

Now you know where I am currently, I would like to tell you the other bit, which if you pardon the expression, was the real kick in the balls.

The irony of this whole situation is that currently the government has a drive to get all the disabled people it can, who are capable, back into work. This means that I am a "priority 1" when it comes to Monday to Friday funding. There is no end of support they will give me to enable me to stay in work. I am fully supported from the moment I get up to the moment I go to bed, and even overnight, Monday to Friday, because I am working. 

However when it comes to the weekend, the part of the week all working people look forward to, I am left with potentially no more support than the basic necessary help. That means no matter how well I do professionally in life, the opportunity for me to have a normal healthy social life is snatched away...

The biggest thing bothering me about the whole situation is the blase attitude that people in authority have for disabled people. You must forget when you read this that I am a person, with dreams and aspirations. I am merely a statistic, a cost to the local economy, who is judged by eligibility criteria. It doesn't matter that we have feelings, or that we may want to do something with out lives. If the money isn't there we have to get used to the fact that we are expected to go to work, contribute financially to society, but not to contribute emotionally or socially. 

To me it seems that the old adage is becoming more and more true...

"A disabled person should be seen and not heard"

or is that a child......

In certain eyes the same thing?

The Comedy Of Growing Up...

Right, I think its about time I addressed the issue of growing up. Its a rather funny state of affairs, and it seems to happen completely differently to all of us, which I know is stating the obvious but bare with me...

I've reached a time in life, as a twenty four year old where things are starting to get interesting in terms of catching up with old friends. We've all had a few years now, most of us out of education, to sort out lives out a bit and start to have careers. 

As I think I have already told you, I grew up into a college lecturer firstly, then a facilitator, then a technician, and finally a researcher, ending up with just the three jobs, Lecturer, Technician and Researcher. Now I hadn't planned this at all, I got a call, and being disabled and out of education had nothing better to do at the time, so it developed from there. Not particularly interesting I grant you, but its the truth, not all life is rock and roll....

However, today I bumped into an old friend on the train. I've not seen him since we were both about twelve. He too has a disability but that's not particularly important to this story, except for the fact that it leads us to the third character in this tale, also with a disability, who is the most interesting!

The guy on the train, Hayden, has grown up to be in a band, they are pretty good, not seen them live but heard them online and I was suitably impressed. Anyway, on the train he didn't recognise me, not to worry I introduced myself and it all came flooding back to him, poor chap. It was after the pleasantries that we got on to reminiscing about Lee. I've not seen him since school, but Hayden has as he lives in the same street. Turns out Lee has become the UK's only disabled wrestler!! How utterly bonkers is that?!

I am all for pushing the career path, and stuff like that, but it lead me to think, hmmm, funny how we all grow up. People you were good friends at school with now have entirely different lives, and move in social circles you probably would never fit into these days. For example, the three of us lads had two friends that spring instantly to mind, Gemma and Alice. Gemma has grown up to be a doctor, and Alice is another musician. Now I can't imagine that Gemma and her lifestyle would fit in anymore with a bunch of musicians and a wrestler and me, strange what time does to people...

(Now I will admit mid post here, that I am not entirely sure where this rambling mess is going, so I'll forgive you if you turn back now! If you stay however it might get interesting, no promises though...)

I know people change, we have to, its part of maturing, but is change always for the better. Is the change actually us wanting to change, or is it us changing due to the environment we find ourselves in, changing around us and we find ourselves needing to fit into it?

A good casing point would be my job at the moment, I have been teaching and stuff since I was twenty. With a teacher job, comes a certain amount of responsibility and the need to be sensible. Now I am no way saying that I am a perfect teacher, this is just what I have noticed. 

I started pretty young, and at twenty I was responsible for teaching GCSE media to students. This meant that I had to keep a boundary between me and the students, which meant that in reality my new friends were the other lecturers at the college.  All of which were much older than me and had been teaching for ages. Ninety percent of them had sensible grown up lives, with families and all the trimmings. This meant that I was in an environment where I had to grow up fast, and do a good job. I'm not complaining, it was a good experience, it made me the person I am today. It just makes me think, you can't un-mature, so what happens if you want to go back and do some of the things that you'd used to have done. It just won't be the same. People move on, names and faces change, and no matter how good it is in the present, it seems that a few years down the line, you always seem to be looking back with fondness. I'm sure all of you reading this have memories of a friend or colleague you got on really well with, and now and then you wonder what they are up to? You perhaps don't have a number or address for them, but sometime you think of the good old days, and would like to get in touch.

No..... Just me then.....

(Ah ha, its evolved inside my tiny brain, I know where I am going with it, hang on...)

I think that this feeling of missing people, or remembering the good times or bad times or whatever is surely a good thing. It means you feel happiness or loss, it means you have emotional ties to people. That sense of "ah nice one I just found so and so on facebook, not heard from them in years..." is a good feeling. You are remaking the emotional connection. 

These days though, and I am thinking particularly of my 14yr old brother's generation and subsequent generations, people aren't going to have this emotional connection to others are they. With social networking so prevalent and mobile phones owned by more or less everyone, its not like we will ever loose touch. So if we never loose touch, and know that on the end of a text, call or email, everyone you've ever liked will be there, are we going to take friendships for granted? Will we loose the ability to cherish the memories of the fun times together, because its instantly documented in pictures and video on a social networking site. Will we grow up through the technological interfaces rather than in face to face situations with real life friends? Will my brother actually ever loose touch with people, like us older generations have? What happens if you never loose touch, I have no idea....

You see the thing I have noticed over the last few years is that as people move on, it is then that you can really see who are your true friends. Fair enough you have 200+ friends on facebook, but are they real friends? Do you know how many of those you could not see for years, but it be like you'd never left off next time you see them? I'd hazard a guess at not many... I've learnt that a lot of the time friends are very present tense, I've got loads of friends at the minute I think the world of, and we have a lot of fun together. However if that frequency of seeing them diminishes it all starts to unravel... Its after the gaps that you know who your true friends are, and with social networking I think that its going to get harder for people to distinguish... 

Right that's all I have to say for now on the subject, I need to think more about it and get back to you, which I will on due time, with a different colour font for the new bits! Reply to this one if you will and let me know what you think, I'd be intrigued to know.