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Carers Poverty Protest Petition - Page 4 - Carers UK Forum

Carers Poverty Protest Petition

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61 posts
The only thing that will change things is direct action and who among us would be willing to dump the person we care for and leave them to the tender mercies of the Social Work departments or Health Boards?

the caring is just relentless and we are constantly together (53 year old dad, 49 year old mum (me) and 24 year old son).

Regards all,
Eunice
Well, yes, Eunice - all our circumstances are different and I appreciate that what is right for us wont apply in all caring situations, especially where a major illness is involved.. But in essence that is exactly what I am planning to do (not dump him but hand over the main care responsibility) when my son reaches the age of 21. Does that make me a bad person? the way I see it is that the last thing a healthy young man with a learning disability and a great social life wants is to live with his mum and dad for ever telling him what to do. So we are already planning the transition, and he is only 14 ... I cant wait !

on the day of the protest, april 22nd, the petition will be handed
in by a party of carers including george and the old doll Image
Krys
That serves George right, it was his silly idea in the first place Image I don't expect the old doll will be impressed one little bit though.

Here is a bit of history: Cherie Blair invited Carers to a reception at No 10 in June 1997 shortly after Labour was elected in a landslide ... obviously trying to keep us on their side... it was fun at the time but beware, getting into No10 is just the start of the problem - real politics is about the exercise of raw power, not the genteel nibbling of chocolate hob nobs and rubbing shoulders with the delightful first couple, as our American cousins are about to find out the hard way. Its always easier to squeeze concessions from a government on its knees than one with a 150 majority in the House.... and thats why the time is right to hit them hard now.. not Labour, they are doomed, its the opposition we need to be speaking to in order to get some leverage on their manifestos.

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Dear Excalibur

My son has Duchenne Muscular Dystrophy which is a fatal condition for which there is no treatment and no cure. We were told his life expectancy was 18. As I said he is now 24 years old.

R is a 2:1 Honours BSc graduate. He would love a job and a girlfriend - not neccesarily in that order! He has been for many interviews but as soon as they see the powered wheelchair at interview they think of an excuse not to give him the job, or the workplace is not accessible or the job has just gone to someone else before R arrived. Yes I know all about anti discrimination legislation (I have a BA Law with distinction) but it all hinges on the words "reasonable adjustments" If he does get a job his father will be the one going to work with him (without pay) to give him support.

We looked at accessing Direct Payments and ILA but because of his intensive care needs it would come in at around £150 a week short of the funds needed

I would love if he could live independently but we have been told by our social worker that if we did not care for Robert he would not be living on his own with support as that would cost too much but that they would put him into a home - that will be over the dead bodies of his father and I.

We're the ones who help him in his search for independence - his father has to go out with him so that he can go to night clubs and discos as the social work department say this is not in their remit. My poor hubby is going to have his eardrums burst going to a Keane concert with young R because there is no other way he could go! Our social work dept refused to help in any way whenever R was at Uni - he used the disabled student grant to fund a CSV worker but my husband had to act as back up

I do hope that your son does manage to get the independece that you crave for him but as you say he is only 14 at the moment. Perhaps the area in which you live will give better suppport than we get here - although that wouldn't be hard as our support is non-existent.

All the best

eun
Yes, my son has a generous budget through the In Control scheme to provide a PA to take him to dances and social events, and to go on holidays with other families etc and give us a break. We live in a fairly good local authority in Scotland.

Getting a job isn't easy for any new graduate, wheelchair user or not: - my degree was less distinguished and I headed off to Japan to work as an English teacher for a year, and then bummed my way for another three years around the world in all sorts of jobs, but I don't suppose that is an option for your son.

What kind of work does he want?
My son wants to be a waiter or masseur - he hasn't decided yet.
I don't think my son will achieve his ambition somehow, but best to aim for the top. He wants to take over as Manager for Man Utd when Alex Ferguson retires. If he can't do that, then he wants to play snooker on TV, and beat Ronnie O'Sullivan!Oh, and he has decided his best bet for a wife is Halle Berry, because she is not only "gorgeous, but she understands Diabetes too, and can count carbohydrates".

These are the things that make us smile, but also break our hearts.If we could help him achieve these ambitions,we would.

At the moment, it is almost impossible for him even to achieve the relatively simple sport of swimming, as our pool hours are all outside school hours, and it is difficult to get one to one care support outside school hours.

When our son was 14, we had higher expectations for his life,but when the Diabetes was diagnosed,a fortnight before his 16th birthday it was impossible even to access respite care for several months. It is not going to be his Downs Syndrome holding him back;it is the Diabetes needs.
Excalibur

R has his degree in Computer Games Technology and he wants to be a games programmer or junior programmer.

A few years ago there were about 10 different games companies in Glasgow but in the last few years they have moved abroad or up to Dundee. As we live in Renfrew these jobs are not feasible.

He has done some freelance work but due to security issues a lot of games programming cannot be done from home. He was told by one prospective employer that if R had not been in a wheelchair he would have been given the job. That particular place had 7 steps up to a lift which did not go to the 4th floor where the company had its office. Problem is a lot of these places are one man operations and don't have the finances to do adaptations etc.

Between you and me, although we encourage R in every way we can, I don't know if working full time is a feasible option for him. In the past year the amount of time he spends on his ventilator has increased (whenever he eats he gets very tired and has to go on his machine for a while). When we go out for the day now we take the machine and battery backup with him so that he can go on it iif needed.

At the same time we don't want to discourage him as depression is a real threat with DMD. The amount of friends R has lost due to this damn disease is well into double figures and I have noticed that it seems to be that when they give up hope they pass away quicker.

He keeps busy by programmming his own games and putting them on Youtube and he does a lot for the Children's Hospice. Thank God for the computer or he would be bored out of his skull.

Like you, we did get support when he was at school but when they leave that dries up like snow off a dyke.

All the best

Eun
209 now Image
If he can't do that, then he wants to play snooker on TV, and beat Ronnie O'Sullivan!Oh, and he has decided his best bet for a wife is Halle Berry, because she is not only "gorgeous, but she understands Diabetes too, and can count carbohydrates".
me and Sarah are big snooker fans and look forward to the day your son takes on Ronnie and beats him Image

Good choice with his future wife as well Image
216, keep it up guys Image
Just signed at 238- hoping to make it to London in April xJackie
61 posts