Here are some suggested organisations that offer expert advice on SN.
Tellus or Dynvox?(13 Posts)
Given our SLT buggered off in Janruary and hasn't been seen since (she took dd off her caseload as dd, umm, cant speak. This despite the statement stipulating 1 hour SLT every 2 weeks) we are trying to find the right communication aid for dd all by ourselves.
I loathe the Tellus (but its cheap to the LEA like it). Someone said the Dynvox is good. Any ideas?
In september I am going to complain. Again. But man am I sick of the SLT service here and how useless they are. You'd think they'd never seen a child with CP before
I don't understand why you haven't followed this up.January to September with no action is unacceptable. What part of statement is the SLT stipulation in? Wherever it is, thry are breaking the law.
You need to involve the people I directed you to before and make a formal complaint.
I have made phone call after phone call. But gievn dd is 24 hours of hell and I have to make phone call after phone call to other services too its not so easy.
They just keep fobbing me off.
SLT thingy is in either 2 or 3. I cant remember and dd's statement is in a black bin bag with hundreds of other pieces of paper. The school say she will get a new SLT come september. I am glad to get rid of the useless one though given 5 years of wasted communication time has gone by but don't hold out much hope any of them know how to communicate with a total body CP child.
Phone calls are awaste of time.
A strongly worded letter to Chief Exac. of NHS and Head of Council referencing statement could be put together in 30 minutes and sent off.
Only way to get things moving.
I have asked dh to write something as I'm useless with words. He says 'write what? that they are all useless and weasel out of helping disabled children?'
You aren't useless at writing at all. You write very well and succinctly on MN. Also you have a PhD so are good at presenting facts and not letting emotion take over.
I know it is really tough and you have so much on your plate already but I canonly tell you that without aformal written complaint, you will not get redress.
I agree that phone calls are pointless. Letters are recorded on files and they know that they have to respond or risk being bollocked later.
IPSEA have model letters. It doesn't need to say much, just that they are breaking the law by not providing the provision in dd's Statement and asking them to sort it out.
You can do it when dd goes back to school in September. Ban yourself from MN for a day and go on IPSEA for help if necessary and write it.
It is the only way. They pretend that phone calls haven't been made.
Looks like me and you both goingbe fighting salt in September im just waiting see what new one like though am starting preparing now
I'm too tired and plan to run away to sea. Dealing with lennox-gastaut, a too small wheelchair that gives her pressure sores, no physio or OT over the summer and now the bloody SLT. There's a limit to how much one person can take!
Thank the lord for valium which I am now on and it makes the world a happier place
You really do seem to get sh*t service on all fronts.
I assume it is an area thing & not that you are blacklisted as an awkward enthusiastic parent.
So assuming its a common problem in your area, can you get together with a few of the other sn parents & maybe approach the press. Its sometimes easier to fight the bastards if you have someone to share the burden with.
Trying to chase specific depts though, i'm afraid the only way to go is to put pen to paper.
no, its not just me. Its this area.
I have joined the Disabled Children''s working group at the hospital and bring these up time and again. Apparently our comments go up to the ChiefExecutive who possibly wipes his bum with them.
Evetuanlly you run out of energy. Going to the press doesn't help either (and no way would I allow dd to be in the paper so lunatics can write in with comments about what a drain on resources she is)
The DCWG has 25 members. 2 of us are parents. The rest are nurses, social workers, hospital types. Attendance at last meeting....3. And I was one of them. Number of taskgroups (there are 8 tackling different areas) who have had a meeting since January. 3. Changes made to anything. Big Fat Zero.
So I am busy but its an immovable monolith. Sad fact is parents are shattered, disabled children are at the bottom of the pile and this situation has been like this for years. When dd was born 5 years ago I heard parents complaining it took 2 years to get a wheelchair. I couldn't believe it. But then discovered its true.
Of course you're tired and stressed. In September, you'll have six hours a day child-free and hopefully more energy. Then the letter-writing can begin.
I hate writing letters about J. It's crap when you have to constantly fight for something that you know your child is entitled to. I have 14 lever-arched files full of letters to/ from me about J, all his Statement paperwork etc. etc. It's crap that it's the only way. But it is. In the weeks when I don't need to write letters about J, I write letters about the general situation and the farce that is services for disabled children round here. I am also on a group that is supposed to make change happen. But in times when J needs me to be militant for him, I'm afraid I stop doing anything about the general situation as he is more important.
Im tired to fed up of fighting for things and banging head agains t brick wall might be easier , and streched about as thin as I can go am hoping once school starts might get more time do things and get some sleep be good to.
yours wipe s his bum riven thinks ours files his straight into bin or take shome for kids drawing paper
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