Posted on: Sun, Aug 17 2008 12:44 AM
Posted by: Joe
Posts: 12
i have slightly different take on this although i definately aggree with everything you wrote!
i am 28 and live with Cerebral Palsy and i use a wheelchair perminantly due to a lack of balance i also live with mental health issues.. i'm told i'm fairly intelligent, but i know that i am in no way a accademic type so i left school with minimal qualifications, partly due to bullying and mental health/concentration issues , this further limmits my options for employment considerably.
i am quite lucky i think living in England as although i beleive things over here in the treatment and understanding of disabled people has great room for improvement, no one i think is completely ignored finacially if there are unable to work, the National Health Service also means that although there may be a rediculously long waiting period, treatment for medical issues can be given to people regardless of their financial status.
i beleive also that sadly people really don't consider the impact of their descisions about other people finances. Schemes seem to be popping up everywhere to "help" disabled people get back to work, but that is where the major problem lies, the ones i have heard of only seem to be aimed at getting people back to work, and it also seems to be aimed at people who have become disabled,there seems to be no practical understanding for people like me who have never worked.
My social worker for a long time was pushing me to try and find work because being home so much doesn't help my mental health, which also seems to affect my physical health. But my social worker didn't seem to understand that especially at the level of education, i would actually end up worse off financially, because with the benefit situation in the UK being how it is, getting money/benefits from the goverment doesn't just change the ammount of money you have in your pocket, it entitles you to lots and lots of other financial support and free services, and losing all that stuff would make life too expensive.
i have 24/7 care because although i consider myself more able than some, i am not able enough and most of my care needs relate to washing, dressing and toiletting, and my toiletting can't be at planned times.. i can feed myself, sometimes i need things to be cut up for me, i can't cook really purely as a safety issue. there are many more things i need help with but those are the most obvious.
My care is yet another reason why employment would make me worse off, as at the minute my suggested contribution toward my care costs is £120+ monthly and i haven't been paying it because i am struggling to pay bills etc so i may already get into trouble for not paying my way, if i had employment apparently my contribution toward my care would increase dramatically and i was told it could even be half as much as my earnings.
Another issue i have with being pushed into work and i don't know how disabled people who work deal with this either.. Every single service that is there to improve my life, give me support anything like that, the wheelchair clinnic that provides my wheelchairs, expect me to be available for them Mon-Fri 09:00-17:30 so how do you work around that i mean it's bad enough if it's one service needs that bu it seems to be all of them, it's bad enough when it's something i need to go to and make an appointment but there are also services such as community/district nurses, and the people that provice my continance supplies, insist oncomming to me and they don't give a time or even an indication of AM/PM so i often have to be in all day.
Then there's the fact that i am a wheelchair user, ignoring my mobilty issues for now as there is always a way to do something you really need to do.. Lets focus of the actual chair, the monday just gone i had a problem with my tyres, both of them went don't completely so i have no idea what the problem was, we didn't get to call to arange repairs until tuesday morning and all the company could tell me is that if there engeneer came that day it would be before 16:30 as if he didn't appear by then, they were not comming, well they didn't come, they finally came really late Wedsday and only pumped the tyres up even though both me and my care said it wouldn't work as we had tried that, but he refused to do anything and left, now bare in mind they have been informed by me tons of times that this is my only chair, anyway sorry back to my point the tyres went don't within minutes so we got the emergency man in as i'd already been trapped indoors since monday, the emergency man only did one wheel so the other one was flat again in minutes, i did get it completely fixed Firday by the original man who came Tuesday, and he admitted the reason he couldn't do it Tuesday was because he had no inner tubes!!!
So my ordeal with getting my wheelchair usable should have taken my day, not my week and do you really think if i had an employer, they would beleive i would be left that long when it's my only chair and even if they did beleive me, with all my appointments aswell i would eventually lose my job over missing too much work time.
Sorry i've gone on so much
