Grants and help.

vanilla

Hi everyone, i'm in need of some advice. My daughter(age 6) suffers for cerebral palsy and i've asked for an ot to come to the house and see if we could possible get a disability grant for a bedroom as she shares her very small bedroom with her 2 brothers. I phoned them in june and they said they would get back to me with a date that they would call out but they never rang, so i rang them and was met with Mrs X is of sick won't be back for a few weeks, then it was Mrs X isn't here but will contact you soon, then she was away on hoilday. When i finally got hold of her she informed me that the case has now been passed on to someone else and that they would contact me in a week, well a week came there last friday. So i phoned yesterday to speak to the new woman Mrs B and Mrs X answered and said she was out at a school today.When she asked who it was and i said, she said oh Mrs B will contact you in the next few weeks.
My husband suffers from schizophrenia and from sunday has been going through an eposide(sp) and refuses to go to hospital, isn't sleeping and is selfharming, the treatment team have been out all week to help him. Also with the kids returning to school(all but 1), my stress level is through the roof.
The house has so many problems, i'm in desperate need of a room for my daughter, they is water leaking from under tiles in the kitchen( i think it is coming from the wall, the kitchen cuboard are falling apart,doors falling off and bottom of cuboard falling out, there is damp in the bathroom and back bedroom and the walls are black and when i wash it, the back is back in a few days, i keep windows open all day and on second latch at night. My kids bedroom the paint on there walls is wet nearly all of the time.
I know the simple option would be to move but i have MIL and FIL down the lane to help me with my husband and if i didn't have them there everything would be alot worst.
Sorry for such a long post and i'm not sure if anyone can give any advice but i do feel a bit better writing it all down.

Morglin

Write to the manager of the Adult and Disability Team at your local council, and inform them if you don't get some help and a visit soon, you will be contacting your MP.

If they don't respond, then contact your MP.

You could also try these people:

http://www.dialuk.info/findadial/index.asp

Lin

*Pixie*_3

Do you have a social worker? This is the sort of thing they should be sorting out for you.
I would also try approaching your local councillor for support as it does seem like you are not getting the service you deserve from your council.

cattie

Apart from other advice offered here, ask if your husbands cpn & psychiatrist could contact social services as the situation is making your husband very ill & something needs to be done asap. You must fell you banging your head against a brick wall at the way the system has treated you so far.

vanilla

Thanks for all the replies, i've been in touch with the grant people and they have said that they will send someone out to look at the damp and the kitchen as it is under enveramental health or something.
As for the disability grant the woman who is now dealing with it is off until monday and i've left 2 different messages at 2 different places stating that it is urgent, roll on monday.
Phone social services and have asked for a social worker for my daughter and they'll put it forward to the seniors but that it could take weeks to arrange.
Tryed to contact health visitor to, to see if i could get a letter from her as backing.
We got support last year from a councellor but the ot didn't budge and inch.(we got turned down last year on the grounds that she wasn't in a wheel chair). Eventho she has very poor balance (fell last week and knocked a tooth out.
The cpn's have only left and they know i'm total stressed and wracked with everything going on, husband and house. I will get aletter from them once they have my husband back on track.
The social services that i was talking to on the phone even said that the situation with the room needed to be done as it is unexceptable to have them sharing in such a small room. So fingers crossed that i hear some news soon.
Thanks for all the advice and i'll keep you all posted.

wolfehouse

depending on whether you are in an owned house or a rented house different things will be considered.
the first would be if it is better for you all to move somewhere bigger (especially if its rented).

if building another bedroom will be the answer it will depend on the ot assessment of your daughters likely long term needs. it is needs, not wants but you can always make a case imho when things are as difficult as your situation sounds.
you can get a psg- private secotr grant for owned homes. these are means tested and different authorities will ask for a contribution for different amounts (100% grant in some circumstances, 90% or 75% in others). my council now makes you agree that the council will get the cost back when/if the house is sold (although they don't care if it increases the value of the house).

if its housing association- well, the association also has to agree. on the other hand they have a duty to make sure people with disabilities are not disadvantaged.

May I just make a plea for the poor OT- they are usually (don't know where you are) allocated cases by a practice team leader who is not an OT and therefore cannot (unless they are special) prioritise things the way an ot might. in my area ots are given 5 new cases a week with very poor consideration of difficulty weighting. And as with all things social work if your worker is ill, sometimes you don't get a service until/if they come back. but you should, as someone said before phone and speak to someone higher up the ladder.

Sounds as if you have it pretty tough as a carer- please find out who your local carer's organisation is and see how they can help. you have a right to an assessment of your own needs separately as a carer too.

vanilla

We are renting privatly(sp) of my FIL and MIL and hope to never move.
Moving to a bigger house would be fine but then i'd have no support for my husband as when he has a really bad eposide he listens more to his parents.
I know it's about needes but surely it is a need. The ot last time offered a wetroom and said she would move everything in the bathroom about sink,toilet but as i said at the time i really need the bedroom.
The thing that upset me this time is the first ot never rang to tell me it would be someone different, it was me that had to rang her. I feel like i'm being brushed off all the time. I don't know the cryteria(sp) is but my daughter has a 1 2 1 at school and a domistic at school as well as someone in once a week from the resource team. She see's physio once a month and speech every week for 6-8 week blockes. She constandly falls and has had splints, botox and it made no difference and is now wearing special shoes which again is making no difference, if we were in town and she has to walk a distance she say's her legs and feet are sore, so i carry her. She wears 2 hearing aids and with out them she lipreads. She has exercises to do everynight from physio and they have to be done in the livingroom as the bedroom is to small, so if people are up she refuses to do them in front of then. She has 2 pillows behind her at night as she has reflux and sometimes chokes in the middle of the night.
The only sulution we have is to turn are utility room into a bedroom by knocking down a wall in the kitchen but it would mean that she would be at one end of the house and me at the other, if she choked in the middle of the night i wouldn't hear her ( it's a scary thought).

mummytofour

Are you claiming DLA and carers? I am sure you are but so many people dont even know about these things :-) The utility room sounds like an idea, coule you move the boys in there? That way your daughter could be near you upstairs if she needs you in the night.

vanilla

Yes we are getting dla and carers, problem with moving the boys in there is that there would only be enough room for a single bed and maybe a wardrobe and if they needed the toilet in the middle of the night they would have to walk through the the kitchen,livingroom and down the hall, we live in a small bungalow. It would be the same for my daughter and i'd have to leave lights on or make the switches lower.

wolfehouse

don't know for sure but if you are renting i think the landlord actually has to apply for the grant instead of you.

vanilla

He's fine with it all, the kitchen goes through landlord, and disability grant through us.