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Why can't my son have a life too? - Carers UK Forum

Why can't my son have a life too?

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Son wants to go out clubbing this saturday, he's got a 30th birthday party a week on Friday, he wants to go to his usual club on the Saturday after that and he wants to meet up with a girl he has met on line. Nothing unusual in that - non-disabled young men would be able to do that.

Our problem is that his dad is going to have to go with him each time. I have just recovered from being in bed flat on my back for two weeks and my husband has had to do everything (including putting junior to bed on his own) single handed and he is absolutely knackered.

Two of them having a row dad saying son selfish for expecting dad to have to do all this - son saying he wants to go out the same as everybody else does. Hubby is feeling too old to sit and listen to thumping music - he wants to be at home watching the telly and relaxing.

Why can't the social work dept provide a worker so that he can do this - they provide workers for people with learning disabilities so why can't he have one too? Its not bl**dy fair Image


Eun
Sorry meant to start the above in a new thread - could somebody move it for me please Image

Eun
As requested, Eun.
can you remind me again why your son cannot have an Individual Budget or Direct Payments. Then he could employ somebody to take him out for his social events. much better than his dad taking him i would think.
I know what you mean Eun as we are doing much the same for our son and have been since he turned 18 in Jan.

We have been taking him out to pubs and clubs and to listen to bands and dj's etc. All this is so he can do it on his own one day. (hopefully)

While we were out last weekend we saw a young man who was blind with a PA in a rock club. He was loving the music and a few drinks.

This made me wonder about a PA for my son as I'm sure he doesn't want to hang out with us old foggies when he feels more confident.

Is that something you may be able to consider for your son?
The problem is that for Robert to get access to a PA our social work department insists that he will have to take the Direct Payments and ILF for EVERYTHING. That includes the 2 workers he has every morning to get him out of bed and the two workers that he gets twice a week to give him a shower.
They will also charge him £48 (at last enquiring it will probably be more than that now) a week - that is the care component of his DLA plus some of his Incapacity benefit. The social work dept will not give him enough money to cover everything because he has complex needs (this is why they have said if we do not care for him they will place him in an old person's home as it will be cheaper for them that way).
He has been assessed as needing two workers for his care needs by the social work dept themselves.Some SW depts allow people to have DP's for the extras over and above their care needs but as I said ours takes an all or nothing approach.
We are all on benefits (no help with council tax, rent or prescriptions etc and I am also on high rate care and mobility because i also have DMD) we simply cannot afford to lose the money every week plus we could end up paying for the exact same service which we get for nothing at the moment - its crazy when you think how much hubby and I save them isn't it?

Eun
Its absoloutely crazy i know.

You have to either stay as you are or bite the bullet and go the DP way, but its difficult to work out if that would be any better.

Just keep clear of that old peoples home, i cannot see how that could possibly be in his best interest. Itss almost like they are blackmailing you by saying that. Its morally unacceptable. However, like us all i am sure you have tried and fought the battles. don't give up though, it sounds to me like your son is a very special case. Someone who is entitled to a life like us all, but does not fit easily into any established situation. But not only that, you and your husband are entitled to a life as well.

good luck.
In Control for people with LD is also means-tested as is all social services provision for people with LD. I think that the belief that the system is unfair to certain groups is more a matter of perception than of fact, whether or not means-testing is fair or whether the level at which charges apply is unfair, and I believe that it is set too low and, as illustrated here, denies individuals services which they need, is another issue.
my daughter is in receipt of direct payments but l am thinking of cancelling it she has Autism and Cerebral palsy she 10hrs per week but they are not doing anything l cant do with her and then they moan about pushing wheelchair l push it every day for nothing (don get carers due to works pension) l just feel its a waste of money it is costing us nearly £200 a month from her care component of DLA they take her to shopping centres or they sit in house with her and l go out but that doesnt work cos l dont always want to go out but if l am in the house my daughter just wants me l dont know how to go about cancelling it someone said you can have a family member as helper but then l would have to do more paperwork as right now l do it through agency if anyone could tell me more about it l would be most grateful

take care all
Jeanxx
We cancelled our son's DP's.The paperwork was too much.The Rowan Organisation were supposed to help, but when I needed their support when our younger son died, (and Social Services still insisted on getting the paperwork in on time),the Rowan worker was off on long term sick. As with your daughter Jean, all his support worker was doing was taking him out to the shops and going to play pool. His care component had to go towards that. Wonderful to have a job like that. There were also plenty of times when his care worker turned up late,with one excuse or another, and one day turned up an hour early, so that our son was not missing out, and he ended up taking him to the Drs surgery for an appointment (for the care worker, not our son).There were also days when he did not turn up at all, as he had been asked by another agency to go and do various courses.
Our daughter looked after our son for respite care with DP's, but this was after a disagreement with Social Services, where I stood my ground completely. THey only agreed to it as a one off(for us to go away for our Silver Wedding Anniversary last year). My daughter was paid £300 for four days work!!!Actually she felt so guilty about the amount, that when we came home she had filled the freezer and larder up too, which a stranger would not have done.She could have claimed expenses too,as she took him out in the car each day,but the paperwork wasn't worth the hassle.
Good luck with your decision Jean.