#6
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6 hours respite a week when you have to look after a child for 24hours a day isnt even giving the parents one nights sleep a week, i know when we had our respite taken off us and we were fighting to get it back the social worker at last meeting i saw her at before she dumped us admitted that she knew we were at near family breakdown, mark had had a breakdown and was off sick from work and they still didnt do anything to help us. the transitional social worker knows that if once matt is 18 (in june this year) if they dont get his respite sorted i told him i couldnt go through that again where we had a year of no support whatsoever and meetings where they made up stories about matt. fortunately the transitional social worker was with us through all this though his hands are tied till matt is 18 and he has promised that this wont happen under him and i feel a lot more support already from him than i ever did with last social worker but i dont know what i would do in Riven's situation at all, i just glad that i didnt start having respite problems till matt was 16 but unfortunately i think cameron needs to look at the transitional age disabled as well as children as finding places for them to go when they are to old for some things too old for others is not fun
There comes a point in your life when you realize:Who matters,Who never did,Who won't anymore...And who always will..
So, don't worry about people from your past,there's a reason why they didn't make it to your future.
#7
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Well worth a read on the following thread:
http://www.parentsofdisabledchildren.co.uk/catch-us-on-radio-t-4572.html

Ill be raising some very valid points tommorow morning on BBC RADIO BERKSHIRE oh and i dug over some comments from David Cameron prior to the election that i will be quoting Smile
But on the other side it will need to be explained that the years of under investment from last goverment has left the system at breaking point.
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#8
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Is there a way to get the funding 'fenced in' or whatever its called?
HeartHeart Stacy HeartHeart
Mother to Terry 10 MLD + ADHD, Nicole 9 Cri-du-chat Syndrome ADHD Asthma GDD Coarctation, Jessica 4 Cri-Du-Chat Syndrome GDD Reflux
#9
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i was discussing this where matt goes through aiming high its a rumble tumble type place 4 disabled children and she said that the money was there for short breaks and respite but it all depended on if any of it came to aiming high and i said to her that none of the money was ringfenced for the disabled and it was up to council how it was spent, we have the problem that where the unit is situated is in newcastle under lyme and we are in stoke on trent so different councils but i was told he could go on waiting list for when he is 18 (in june) for the adults session 8pm to 10pm which i think he would love and its only £4 a session so might work out better for him as aiming high was supposed to be for up to 24yrs old yet there are very limited activities for over 16s really
There comes a point in your life when you realize:Who matters,Who never did,Who won't anymore...And who always will..
So, don't worry about people from your past,there's a reason why they didn't make it to your future.


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