just an update on the battle we have been having for last 10 months regarding ss taking matthews respite away due to petty reasons.
after going over the unit managers head and going to the council i have now been told that the funding is in place for Matt to go to a private respite unit, they have places available and it sounds like they specialise in autism, by next week we should have visited the unit and be looking into starting the teatime visits. only argument that is still outstanding is whether we are expected to lose the 42 nights we should have had from May 09 to May 10 due to ss dragging their feet and trying to save money and not get the respite sorted, which would be annoying as they agreed we needed the respite and the stress of it has caused hubby to be signed off sick with severe depression and anxiety after working for 20yrs without being off sick.
at the moment we have been told we would be getting the full 42 nights and would need to discuss if we wanted weekends or weekdays, i said i cant see how you can fit in 2 yrs of respite into weekends only and thats when she started erm erm erming lol
took 8 weeks from first meeting with council officer to this point where it had taken 8 months and the threat of a second complaint before i saw him, only reason i saw him was complaints officer suggested i saw him before i put in the complaint.
so fingers crossed its good news as we should be getting respite soon and he has a holiday with college next month and 2 nights away with outreach in easter hols which he is looking forward to (activity hols) and will not have to deal with this until he reaches 18 in june next year lol
corinne

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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.

So the respite will be for when Matt turns 18?
I hear so many horror stories about when a child turns 18 how all services are cut off and thats when problems usually begin.
So its good news that things are being done!

noooooo the respite is for up until he is 18, listening to the news it seems its the transisional period of 16-18 where Children are being let down. there are a few places where matt can go at 18 but prob is that he is too young at the moment. we had a care assessment done that said that our needs hadnt changed and we should still be getting 42 nights a year but in last year we have only had 2 nights so been fighting to get what we were promised after the last respite cuts (we had direct payments taken off us but there was no money in the pot so we never actually received that either hehe) so instead of 42 nights and direct payments we were cut to the 42 nights but because matt doesnt sleep at 9pm and needed attention they removed him
corinne

I actually just huffed at that Corinne.......
Im getting so bleeding annoyed at reading of people being let down in so many ways.
At least though there are people that will challenge them but imagine Corinne that for every one of you that will fight there are possibly another 10 who just give up and thats the upsetting part i find.
So to qualify for respite Matt has to sleep at 9pm even though he is 17 years old and this is the reason you need respite?

sorry i guess i just simplified it. most of the Children would be in bed by 9 and matt would wait up for the night staff who came on at 9, they would then put him in his room but as he doesnt like being alone for long he knew how to get attention and that was to climb on the shed roof lol. kept telling them all they needed to do was keep him in living room even if paying him no attention or sit in his room with him until he settled down but they didnt want to actually work!!! by the time we had got locks on the doors so he couldnt get out at night the older Children had left and they said that he was now too old to stay with Children 12 and under (they want Children that spend weekend watching telly or like just playing on the swings and stuff matt needed more activity like a hike) but there was nowhere else for him to go until we took it further.

i dont blame most parents for giving in Daniel its only because i was sick of being trampled on i got stubborn, a few years ago i probably would have given up, if they had given me a letter saying they had assessed our need and we would only be getting direct payments i would have done nothing but because they said we would be getting 42 nights i wasnt letting it drop. Guess thats one reason why i encourage ppl on here to fight now as it can get harder when they get older if they need to fight later
Corinne