I'm obviously a fool as I actually BELIEVED that social services would come and sort out the bathroom for dd.

[Hangingbellyofbabylon]

dd is nearly 3 and has CP. We went through the CAF process at the end of the summer and a referral to SS was made at the start of September. Didn't hear anything for ages then mid december the Early years woman said that SS had 'lost' my paperwork but now dealing with it. So I naively believed that sorting out would mean sorting out but no, I get a letter from the bastards today saying that 'due to overwhelming demand' the disabled children's team has a very long waiting list and they cannot tell me when they can even come to assess us, let alone do the work . I don't want much, just some rails and steps around the loo and sink so dd can use the bathroom like any other child. Is it too much to expect? The feckers make me mad, I just wish we had the money to sort it out ourselves but of course, I had to give my job to look after dd and for some strange reason DLA payments don't quite measure up. So cripple ourselves with debt or stand back and watch our lovely little girl not getting the help she needs.

Ok, phew. Rant over. Just needed to be said.

glad to listen to your rant

it is the least i can do

effing twitters

riven will know how you feel, her bathroom saga is never ending too

how bloody awful. may help if you put in a complaint - I think the appropriate body would be the local government ombudsman.

with you

i'm really msorry to hear that just keep on and on write letters make calls

we shouldnt have to fight that hard but im afraid to get anywhere we have to they wont just come to us ans the high amount of others

really hope you get the help you need

just keep on and on eventually they will do what there supposed to but im aftraid normally you have to be the one screaming loudest to be heard

as in in agreement with, not with you

Is it a SS OT you were waiting for? or just a SW? If just SW is it possible to see if you can ring up OT dept yourself and self-refer to them? I did this when I had similar response from ss when dd needed equipment.

Is not right but the louder you are and more often you make a fuss more chance of getting what you need.

Good Luck

Sounds typical, sadly. We're waiting for an alarm system (ds1 asd rather than CP0 and DH is thinking about upping wor hours (already has 2 jobs) to pay for it due to wait (after awful experience yesterday where trying t bolt ds1 bashed head and there was gushing blood)

Do comlpain- he who shouts loudest. COnsider your MP also.

bored has a good point - it doesn't sound like you are asking for anything massive - so maybe OT dept could help.

We got our rails (on the stairs - called 'mobsticks' I think) and a seat in the shower arranged via the OT, but t took us ages to get the OT assigned. And she was part of SS.... as opposed to the other OT who comes via the LEA and goes into school.... I get so confused sometimes I feel I am totally losing the plot.
I hope you get something sorted.

HBOB can really understand your frustration.

We have now been waiting 2 years for SS to put a shower in,grab rails,and re tarmac the drive and put fencing all around our house, as DD has CP (only mild) but she is ASD as well and is an escape artist,like you i dont work and DH was out of work for nearly a year and we just dont have the money,hes lost his last 3 jobs through taking time off for emergency admissions and hospital appts,he works for an agency and is only getting 2 days a week so is going to have to go back on IS while he looks for another job as 2 days a week doesnt cover rent and council tax.

it really really stinks doesnt it,especially when you WANT to work but through no fault of your own (ie having a child with disabilities) you cant.

ive just mithered and mithered and mithered and wrote letters etc and next weds they are finally coming round to do the paperwork.

HUGS to you

jen
xx

HBOB - how much do you need to buy the bits you need yourself?

thank everyone - I took your advice and rang SS to talk to their OT. OT was shocked that our paperwork hadn't arrived with them till start of December when early years 'sent' it mid-september . She also got me to go through all of the stuff dd needs and said that there is very long waiting list to even get assessed but hopes that as the work we need is very simple and that once done we could be taken off the books, we might be able to be fitted in sooner. No idea when still but made a massive fuss about quality of life and loss of dignity.

I don't think we should be bumped up the list, it makes me so cross that Riven and all of the others here are going through such crap. What we all need is for them to pull their finger out and properly fund these services.

I'm normally ok but at the moment I have such a huge list of 'battles' - dla renewal to complete, hassle pre-school dd starts in April to do the stuff needed, funding for trike etc etc - you know what I mean. Actually I think more than anything this is the bit the rest of the world and even my family don't get - they see dd and her physical needs and just don't have a clue that fighting the good fight takes up all of my time and energy and leaves me comfort eating, overweight, unfit and tired of life but with no reserve left me to do anything for me.

Don't forget everyone that a good way around the utter unprofessional bs that comes out of local authorities is to start asking for specific evidence of exactly how long waiting lists are, what budgets are, what meetings are taking place, who is personally responsible, how many complaints have been made per year and so on.

After being sent arund the houses a lot, we found out the SEN nursery support funds for our area had been reallocated without consultation to an out of school care scheme in a completely different part of the county which had nothing to do with SEN, on a whim, but initially they lied and said they had run out of money because there were too many children applying. We caught them out on that big time and it scared them sufficiently to make some changes.

The way to do this is the Freedom of Information Act, and that is why the Act is there. It saves a lot of arguing with minions, apart from anything else. Suddenly the Chief Executive will start taking an interest ...