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How much - Page 2 - Carers UK Forum

How much

Discuss news stories and political issues that affect carers.
Eun,

suitable specialist care for those with autism is not readily available ... don't be fooled. The quality of care is variable and getting funding for the best ones is virtually impossible.

Melly1
Social Worker came out to the house this morning and said that his department don't have the funding to give Robert 24/7 care. I said he has a right to independent living and the SW said that no he doesn't if the SW dept can't afford to fund it. He also asked how about we consider telecare. We have told him already that this is totally unsuitable as by the time someone got to him (from whatever other client they were at at the time) while he was choking he could be dead. He then asked how many times a day roughly does he choke and how often? My husband said well how long is a piece of string? The long and the short of it is he needs full time 24/7 care with someone here - not someone at the end of an alrm which he can't even use anyway. For gods sake he can't even wipe his own nose. He is ventilated roughly 14 hours a day. What happens if he needs the toilet during the day - that takes two of us to hoist him up and get him onto his showerchair etc. Even the old folks home is off the table now - its us or basically us! I told him about my collapse and admission to hospital last month but he just shrugged his shoulders. 11 months of waiting since the assessment and this is the result - the SW said he will mark it down as "unmet need" but how does that help us?

Eun
Melly is right, autism specific doesn't necessarily mean anything of the kind.
LD provision is what is generally on offer, this place has the age group of 18 to 65, that in itself seems a bit ambitious in terms of care.
The other thing that I see being debated a lot is that in terms of LD the provision is for higher or lower than what is desired in specific cases, well let me tell anyone who believes this that I have one child on the severe end and one on the higher functioning end and neither get anything that isn't very hard fought for, it's just a ploy to set one group up against another.
Vicky
The other thing that I see being debated a lot is that in terms of LD the provision is for higher or lower than what is desired in specific cases, well let me tell anyone who believes this that I have one child on the severe end and one on the higher functioning end and neither get anything that isn't very hard fought for, it's just a ploy to set one group up against another.
Vicky
I believe it Vicky because I have seen it at first hand and have experienced it for myself. I didn't however view it as "it's not fair" because that wouldn't have made one iota of difference to my carees services. So much depends on what is available in the area in which you live and that's just the way things were/are in my borough. As you rightly say, it is easy to fall into the trap of certain conditions vs others and it is a fruitless waste of time feeling this way, although understandable at times.

I too fought tooth and nail to get the help my daughter needed and things didn't turn out the way we wanted, she is now residing in a hospital for people with learning difficulties. The cost of this placement is astronomical but I will not feel guilty because this is where she needs to be at the moment. I also tried everything possible to make a "life" for her, doing what she wanted, trying absolutely everything-it didn't work.

It isn't always possible or correct to keep our loved ones at home with us. We do what is necessary, we all do. If that means a placement in an expensive setting then so be it-we haven't taken the easy option.

I don't make judgements on others (and please don't think I am suggesting you do!) that I don't know because I don't know what has led them to the point where they are at in life. It should never boil down to "them and us" and hopefully as carers who understand and have empathy for each other, it never will.
I understand where your coming from totally ladybird, the reason I'm interested in this placement is because it is literally a 2 minute walk from me and claims to be specific to the condition my youngest has. I don't know what the future will hold for either of my boys, you do your best but sometimes what was hoped for doesn't come to be so I am not denegrating those who use the services of residential placements but I do wonder how they justify their fees, more than that though is how this place was found on inspection to be good when medicines were out of date or incorectly stored.
My point about funding for one group as opposed to another is really to alert people to the fact that this is sometimes just a nonsense, we have been told my youngest will not benefit from speech therapy in the same way that a higher functioning child would and therefore no provision, my oldest son who is higher functioning does not qualify for help because he is deemed not to need it!
The real truth is they will try and withhold services and funding on whatever basis they think they can get away with.
I am just appalled on a daily basis what the disabled of all ability have to put up with and what counts as good would probably be unaceptable in the mainstream.
Vicky
Totally agree with everything you have said Vicky.

I too would love to know how they manage to justify charging the fees that they do. When I was trying to get more information about what was out there in regard to placements, even those that didn't specialise came in at around a minimum of £500 per week.

Trouble is, they know the market is there for residential places..I wonder if there is some regulatory body that oversees fees charged by homes? I doubt it somehow!