Carers I interview

[NanaNana]

Oh to be in Scotland, now that Spring is here.
Respite is free, the pills are free,
No need to shed a tear.
Oh to have the DPs available to spend.
On hols and computers, just like the commuters
Possibilities never end.
Oh not to have to pay, the money back, they give
It's for care, equipment - that's all, they say
Not enhancement for the way you live.
They give us loads, far more than needed
Then restrict on how we spend it,
We send the surplus back - and then
They give it to us - all over again.

Luckily, DPs and individual budgets/personal budgets are available to use for the good of your caree, be it on holidays or companions or computers or heating or speaker phones or insurances............. IF IF IF IF IF the area you live in introduces them.
Ours does not operate IBs and has no intention of doing so, BUT give us loads more money via DPs for care and equipment ONLY, far more than we need, so in April we have to give back the surplus. WHY DO THEY GIVE US SO MUCH MONEY and then restrict our useage of it so drastically. We can't even pay a £75 third party liability premium with DPs for the PAs, because it's not the 'basic rate', providing the minimum cover. The invoice gets sent back to us, with a demand for us to pay back out of our own money. YET they allow us hundreds of £s each month, which is far too much. If we were to be devilish about this, we should spend all the money which they say we can have on PAs - they wouldn't bat an eyelid. They allocate us all this money, most of which we pay back at the end of the tax year. THEN, they continue to pay us monthly huge sums, which accumulates again and so it goes on. Barmey, it really is. But let us go onto IBs where hubby can benefit more from hols in the sun and our own standing hoist (of which there are none in Shropshire anywhere which he can use). But they just won't introduce it and argue over our '£75'.
MAKE SENSE OF THAT AND I'LL BUY YOU A DRINK.

[Duncaring]

Hi

I dont know where people get the idea that everything is free in Scotland. It depends on the individual's financial situation. We recently paid £1200 to have a disability aid installed in the house. We also have to pay for hand rails for the steps to the front door and more for the steps on the path between the street and the front door. We also have to pay for any non medical assistance. Given that the caree in this case is a man about 5ft 11 and 13 -14 stones I do have to have assistance sometimes as he has already fallen on me to my permanent injury. I am actually little as the name says.

We dont get direct payments or individual budgets. I suppose there are different criteria for different age groups and/or different health situations. I can hardly see any of the octogenarian carees having a day out at the ski slope. There are day centres for elderly but some of these octogenarians do not feel that they are elderly yet. I doubt if there are many care situations which are exactly the same as others.

One thing I do know is that Carers are doing the very best they can to care for their relatives and really dont need to be nipping at each other in the process. We should be sticking together not dividing ourselves into different camps.

Little Lamb

[Scally]

WHY DO THEY GIVE US SO MUCH MONEY and then restrict our useage of it so drastically.
MAKE SENSE OF THAT AND I'LL BUY YOU A DRINK.

Thats the benefit of In Control - you have an overall budget and are pretty much free to spend it on anything within reason - as long as it helps move towards the agreed goals. My main problem is spending money on staff because the rate I am paying is so cheap: but then, we are offering a great work opportunity at a time when flexible p/t jobs are pretty scarce and fairly dire: and how many teenagers do you know who get paid to go bowling, go-karting, eating out, ski-ing and watching movies, attending concerts and top class musical theatre with another guy their age who needs a buddy, I mean, it's pretty close to the dream job, isnt it?

I dropped the boys off at an open air industrial museum and then they had a meal and went for a swim at a leisure pool today: (both offer carer discounts) total cost of meals and tickets was £21, staff costs: £30: thats 6 hours solid respite for only £51 whilst I was out working. This In-Control solution has got to be carer-and caree heaven!

[Duncaring]

Hi Excalibur

You really are not getting this, are you? You are talking about caring for a teenage boy as far as I can gather. I care for an elderly gentleman who can barely walk. What your teenage boy can do bears no relation to what my elderly gentleman can do. Can you imagine the damage a bunch of octogenarians would do to themselves ski-ing bowling or go karting? It probably would not interest your teenage boy to talk about WWII and watch the yesterday channel for hours on end, he may not be interested in ships and the navy, he may not want to use a telescope and stay up half the night tracking stars etc but at least it would not harm him. I cant take my caree out of the house myself, I have done the working and caring balancing act but I would not feel comfortable leaving a teenager in charge of my caree because of the multiple conditions and poor walking.

It is different age groups and different conditions - there is absolutely no comparison.

Little Lamb

[Scally]

Ah, but I have been there too: when I needed a break I packed my octogenarian amputee crumbly caree off on a two week economy cruise in the Med at his own expense, (full medical facilities on Board and disabled access throughout the ship) and luckily they didn't drop him in the sea or leave him stranded in Madeira.
My solution to day care was to hire a local granny to do the housekeeping three days a week and keep an eye on my father in law - she had the patience and time to chatter away endlessly about the War whilst whizzing away through the work we didnt want to do. Cost: £6 an hour. Attendance Allowance and a War Pension covered all of that, with change leftover ... that's what its for, isnt it? To buy time?

Stroppy difficult teenagers are really no different from doddery oldies: they all need carers who aren't afraid to be a bit bossy and take charge (in the nicest possible way) when needs must. Am I the only carer on this list who has cared for a disabled child and a multi-disabled senior simultaneously, whilst working full time? Sometimes I also feel deeply unappreciated and misunderstood - I do have feelings too you know, even though I do my best to hide them with a bit of mischief !

[MaryB]

It's not just age groups, my boy is 13 and could not access what excaliburs son does but even if he could we do not have individual budgets or in control or whatever it is, we have DP's at 4 hours per week, this is for a boy in the high needs class of an SLD school!
I think it's £6 something an hour but that would only pay for the helper and not entrance to anywhere and in any case he would need 2 people if he were to go out, so basically DP's pay for 4 hours child minding at home if we want it.
So it's all very well banging on about how great something is, we are all delighted but it's got nothing to do with being smart around the system if your authority does not do something then that's the end of it, as things stand they are not obliged to offer IB's.
I thought as my other son is now 16 and the DWP say he is now an adult then he could get an IB but SS told me they don't consider him an adult till 18.
Vicky

[Scally]

My son is 16 and we are going down the ESA route because the college course he attends doesn't lead to a qualification ... combine that with DLA at medium rate and direct payments and it all adds up to a lot of money, but less than a quarter of what it would cost if he were in f/t care. Social services knows that too - its about how well you negotiate, not any absolute right.
We have always avoided special schools, and that has meant that my son has been challenged at every turn to struggle to make his own way in society - he is not specially gifted, (bottom 1% IQ according to one educational psychologist) but I have always pushed physical fitness hard: he now uses public transport independently and walks down to and uses the local boxing-gym by himself, has climbed several mountains, canoes, swims, etc etc.. None of this was easy - it took him and me a huge amount of work and graft. He also uses a computer and mobile phone ... I have never taken a soft option in my life: he needs to learn to cope with the world as it is, not be protected from it.
By the way, any child or adult can ski - however severely disabled: you should check out this website and look at some of the amazing things that are possible these days: http://www.disabilitysnowsport.org.uk/
The only true limit is our own imagination ...

[MaryB]

My oldest has been in mainstream and special and neither have been ideal but special caters for his difficulties better than mainstream and is where he is happier.
Youngest is profoundly autistic with severe learning difficulties, non verbal etc, there is no way he could go to a mainstream school other than if we were just insisting for the sake of it, it certainly wouldn't be fair on him and probably not fair on the other children either.
It isn't really about saying anyone is specially gifted but lets keep it real, like it or not there are limitations for everyone and recognizing that is just as important as breaking new ground and pushing the barriers. Special school isn't necessarily a soft option and mainstream isn't necessarily a massive achievement, it's all individual, actually where I live it's extremely difficult to get a child into a special school only the most in need of it get a place.
Vicky

[Scally]

Youngest is profoundly autistic with severe learning difficulties, non verbal etc, there is no way he could go to a mainstream school other than if we were just insisting for the sake of it, it certainly wouldn't be fair on him and probably not fair on the other children either.

OK, in your situation I would be writing to Social Work and asking them to provide full time care for my child. Not because I wanted it, merely to up the ante and as a starting negotiating position. This is a poker game, you have to keep your cards close to your chest. Very close. It would cost social services approximately £150,000 a year to provide the care that you are providing, give or take £50k each way. That puts you in a very powerful position. Know what you are worth. Decide what you really want and need to keep your child at home, ask for it in full, then settle for half. In your case I would be willing to settle for around £50k - enough to provide a team of workers and pay for all activities. Yes. I'm being totally serious. But if I got £30k I wouldnt be crying. And your Social Services Director would be claiming his bonus for getting a great deal for the public purse ... I kid you not. And tell your son that he WILL be going ski-ing, and Scally will be taking him!

[NanaNana]

Had a look at the snowsport site, Excaly.
How do they support disabled people's heads and necks, when the person can't? How do they strap them into the vehicles when their hands and arms flop about everywhere uncontrollably? How do they get people into the warm clothes if they can't be clothed in their wheelchairs? Do they have to travel to the venue in their warm clothes? Does the venue have hoists or boards to move people. How do they maintain the person's balance without them falling out?
Hubby had to be severly strapped down just to go through the MRI scanner, with his jumping legs and flopping arms, severe danger of getting trapped. It was like he was in a straight jacket just to be safe in the tunnel.
Snowsports? How? He would chop his legs off to be able to do that (they're no use anyway, just a nuisance).

I don't begrudge you a single thing of what's available, why shouldn't your son do everything?
I just think you're very lucky.
This isn't a competition to see who's looked after the most disabled person.