lack of help with angelman syndrome child!

[pickledad]

GRRR, IM fuming, I have been waiting for 18 months to be assigned a social worker from children with disabilities team for my 5 yr old daughter.
She is wheelchair bound and has no speech, her school is excellent but we need help at home and dont get it.
Not even a set of ramps or bath lift.

Has anyone else had this problem??

Sorry for ranting, hello everyone

hello and welcome.
I would ring up and ask to speak to the top person(I ahve done this when assigned a duty SW)
explain the situation and the affect it is having on you,
the lift from the cath imo is the worst one, so make sure you say it is doing your back in, I asked what they would do if i couldn't lift her. you really need a SS OT, they will sort the equipment.
does she go to an SN school?

my dd is 14 and has cp.

Hi, i would be livid.
My daughter has a very rare condition and as such is quad cp. I was assigned a social worker from the hospital shortly after she was born,as well as physio,speech thearpist, OT etc and they've all been excellent in seeing that our house is all apropriately adapted and that we have all the equipment we could need.
I am just having the bathroom adaptations updated thanks to the social worker, OT and part funding from a charity.
I would ring and ask to speak to the head of childrens social services in your area and if still no joy i would tell them you're taking it to the local MP and then do so.

Hope they do something about it soon. Good luck, Jo.

Become a 'velvet steamroller' - polite, incredibly persistent and don't take no for an answer. Never wait for help or it won't come because social services have a habit of ignoring all but those who shout the loudest. Shout the loudest. If they say they can't help because there are lots of other more needy families, say 'that is not my issue' and persist, persist, persist. Write to the local paper and expose them. It's horrible for you but you deserve better.

Don't forget that unlike the most of us, lots of them will all be going on Christmas holidays courtesy of the wages we pay them - skiing, sunbathing in Thailand etc. - soon, so it may be even more difficult to pin them down.