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Benefits U-turn could spare families with Disabled Children - Carers UK Forum

Benefits U-turn could spare families with Disabled Children

Discuss news stories and political issues that affect carers.
Recently spotted that Families with Disabled children won't be affected by the government benefits changes taking place in April.

Here's the link; http://bit.ly/benefitsuturn

This is great news for carers but I still worry about where this leaves other families who are really struggling to support themselves.
What about families caring for their adult disabled children? Who have been doing so for 26 years and saving this country a fortune in care home fees, hospital admissions etc. Is that all to be forgotten?

Eun
Eun, I think the country forgets that, although there was a time when it didn't happen that often, disabled kids grow into disabled adults. Frankly, they don't have a clue what it's like.
On the contrary Eun, since my son turned 16 I have been absolutely amazed by the massive amount of extra support available through ESA, DLA and Direct Payments. In fact I think he is not only paying his way, he is probably indirectly subsidising his sister through University. He gets more through benefits alone than most kids his age would get working 40 hours a week on minimum wage. Thats ironic, isnt it?
Thats because your kid has a learning disability Scally. If he had a severe physical disability I think you would find it an entirely different kettle of fish.

Eun
It depends who you are Eun,rather than the disability.If your face fits in the right places, then it seems you can get access to everything, no matter what the disability.
My son was supported really well when he was at school,but my face obviously did not fit when he was in transition. I wanted more for him in the future, but Social Services had other ideas.
Postcode lottery, to some extent. Plus I think if you are optimistic and positive then good stuff tends to come your way, whilst if you assume the worstand plan accordingly, then that is exactly what you get. You lot on here know me as well as anyone, I am not exactly the sort of person to brown-nose my way to benefits that I am not entitled to, and I am certainly not "in with the in crowd" as an Englishman resident in Scotland, where all kinds of chummy things allegedly go on to which I have no access whatsoever. But yes, I do scan the funding environment quite a lot, and try not to miss wonderful opportunities such as the recent "Take A Break" fund for disabled kids in Scotland, which paid for my son to go ski-ing in the Alps for a week before Christmas. I figured as he was still 17 he wouldnt get many more chances to apply for it.
I was very optimistic when my son was a teenager.(talking more about where I live than making assumptions about you Scally,as it is very much whether your face fits in where I live,although I am sure the Council would deny it).
The education system was brilliant. My son started school aged 3, in 1988. Edication authority wanted him in special needs school, the head of the local infants said to us,"you bring him here, I will deal with them."Never looked back.He had support throughout nursery, infants and juniors,first negativity we ever had was in the comprehensive school where we were asked to remove him as he was too disruptive.He was in a special needs class, not allowed to mix with the boys and girls he had always been in school with. In fact, one of them stopped my husband one day in town and asked what had happened to him as he was not with them any more.he went to special needs school,which we were happy with. Our next door neighbour was a retired deputy headteacher,with several teacher relations,and she said if we were not happy with the options available, she would help us to educate him at home,and her cousins would help with various subjects.
We had no input at all from Social Services until he was about 14,I never knew there was anything available. We had support from Barnados for him to go canoeing,youth club and to cubs independently of us, and he had speech therapy for many years, but until he went to special needs school I had no idea that we could ask for support from anywhere else.
"If you are optimistic and positive...good stuff tends to come your way" and "..if you assume the worst and plan accordingly..that is exactly what you get..."

I am sorry but are you for real? Have you even the slightest idea what caring for a severely life threatened disabled person is like? A person for whom a cold can very very rapidly descend into a life threatening chest infection?

If we had not "prepared for the worst" my son would not still be here. He needs extra strong antibiotics (which I keep in the fridge at all times), a nebuliser with the accompanying medication (kept at all times) and the phone number to hand of the hospital in Glasgow where we have to go to get the cough assist machine to help clear his secretions. Oh and of course his ventilator use which has to increase at these times and the extra chest physio which his dad has to give him.

But I suppose according to you we should just be "optimistic" and "positive" and not bother preparing for the worst and it will all go away will it. You have no idea do you?

My son is spending his time fighting to live not going for jaunts to the Alps. Try and be a wee bit more understanding of those of us that no amount of positive thinking is going to change things for. Some people have incurable and progressive conditions which will only get worse. That is a fact and no amount of positive thinking and foolish optimism will change that fact.

Eun
Eun, I suggest you try getting your son reassessed, this time for NHS continuing care. It may help to tap into alternative ways of supporting him, and it's for certain he has health needs.

On a different note, while I understand your feelings, Scally was making a general point - admittedly from his own experiences - and although it's fine to disagree with him, please try to stay within the respect rules.

Scally's experiences are fairly narrow, but then actually most of us have pretty narrow experiences of caring situations - we only really understand our own. That doesn't make anyone's views unrealistic - just different, and not necessarily appropriate to others' experiences.