Lack of support from social services - what now?

Indie_Kid

Er, I have chased it and got nowhere.

SS won't work with me because I couldn't get somewhere and then became too ill. I am now undergoing tests to find out what's going on.

When I have chased it previously, I've still got nowhere.

DomRavioli

Have you put in a complaint to your social worker / NHS trust / whoever looks after the non-existent help that you said you were to get?

Have you got it in writing that you would be entitled to the help?

I agree with the other poster - you need to learn to help yourself as well as having assistance, you aren't a priority housing need as you have somewhere to stay and with relatively little work on your part would make it as safe as it could be (as said previously, the stairs don't move and perhaps slowing down slightly might remind you they are there) and you have expected far too much.

There are people who literally cannot return to their homes because of disability who are waiting for housing, so you really are not a priority.

elsien

Do you have a formal assessment of need from social services, and what does it say about the support that you need? If you think it is inaccurate, then you need to go back to them.
However (and this does depend on where you live) due to cutbacks in some areas social services are only funding critical and substantial need. Your assessment will say what category you have been put into. If you fall below this you may no longer be eligible for help, unless things have changed since then or unless you can get yourself reassessed.
Are there services you can access through your GP instead such as OH assessments which might help with your cane training etc? What about support organisations such as RNIB, are they able to offer any advice or support?

nannytone_2

if yiu feel you are getting nowhere, you need to involve your MP.
social services vary wolfly in what they offer.
its wrong, but thats the way it is.
when i lived in london, social services were awful.
when we criticised them they retaliated by threatening to remove my grandchildre ( the younger boy became seriously disabled through viral encephalitis) they thought it was reasonable to send him home with a feeding machime and 30 minutes of physio a month.
when we protested we were told that we werent coping with the 'situation' amd maybe it was better if both boys were taken into temporary vare.
trust me, i understand how bad it can get!
you need to stand your ground and fight ... but at the same time be realistic

Twisted_Cherry

My best friend was registered Severally Sight Impaired earlier in the year, this came as a shock as we were only expecting her to be registered Partially Sighted (She has Blepharospasm) For 10 years her GP fobbed her off with Anxiety and Depression until finally she got a referral to a Neurologist who diagnosed her two types of Dystonia.


Gradually her sight has deteriorated more and more over the past couple of years, and now she is virtually blind having very limited vision through her eyelids which remain closed - treatment for the condition Botox has failed to work.


It's true you really have to fight and kick up a fuss for help from SS, my friend has little energy to do that, and there is only so much I can do for her. I only wish her husband and daughter would try and understand how Dystonia affects her and do more to help her.


I have watched my friend struggle, and she can no longer do the things she once could, she has really had little support from her family.


As for Social Services, the hospital referred her to the sight team and for a few weeks a woman came out to see her, but that has stopped now. She was given a white cane, then switched to a Symbol Cane as it was more suitable for her but she has received no training on how to use it from Social Services which she should have done - she has literally been left to fend for herself. Social Services was suppose to be organising a Occupational Therapist to come out to her but that never happened also!


As for coping in the house, well she lives in her own home, and they have not given much thought to moving (which surprises me, as both her and her husband could do with moving to more suitable accommodation for there needs). My friend struggles to use the stairs having to count them when going up and down, plus it's an old house and the stairs are incredibly steep. She can also not really use the kitchen and has burnt herself when trying to cook or use the kettle.


She really has no choice but to adapt, as her condition is NEVER going to improve, and the support she get's from family is non-existent, personally I think those around her are struggling to adapt to the fact she has lost her vision, at times not really understanding Dystonia or what it is about.

Indie_Kid

elsien wrote: »

Do you have a formal assessment of need from social services, and what does it say about the support that you need? If you think it is inaccurate, then you need to go back to them.
However (and this does depend on where you live) due to cutbacks in some areas social services are only funding critical and substantial need. Your assessment will say what category you have been put into. If you fall below this you may no longer be eligible for help, unless things have changed since then or unless you can get yourself reassessed.
Are there services you can access through your GP instead such as OH assessments which might help with your cane training etc? What about support organisations such as RNIB, are they able to offer any advice or support?

I don't have anything in writing about the assessment I had. Social worker changed role and I don't currently have another one.

Indie_Kid

DomRavioli wrote: »

Have you put in a complaint to your social worker / NHS trust / whoever looks after the non-existent help that you said you were to get?

Have you got it in writing that you would be entitled to the help?

I agree with the other poster - you need to learn to help yourself as well as having assistance, you aren't a priority housing need as you have somewhere to stay and with relatively little work on your part would make it as safe as it could be (as said previously, the stairs don't move and perhaps slowing down slightly might remind you they are there) and you have expected far too much.

There are people who literally cannot return to their homes because of disability who are waiting for housing, so you really are not a priority.

You clearly missed the part where I live near three main roads. All of which are dangerous for me to cross. Therefore, the only option is to move. Which ever road I cross out f the ones nearby, thers a real risk of being run over.

It's nothing to do with others moving up and down the steps. Doesnt stop me from almost falling down and almost falling into mums car.

I see this forum hasn't changed. Some of you are so judgmental and have no idea what you're talking about.

Tigsteroonie

sh1305 wrote: »

I see this forum hasn't changed. Some of you are so judgmental and have no idea what you're talking about.

I wasn't going to post as I had no practical advice to offer, but I just want to say that I find your response incredibly rude :mad:

People have tried to sympathise, one poster with direct experience of visual impairment has tried to help, and you are knocking back every offer with the whine "but you don't understand" ... No wonder SS are beginning to wash their hands of you.

Twisted_Cherry

sh1305 wrote: »

You clearly missed the part where I live near three main roads. All of which are dangerous for me to cross. Therefore, the only option is to move. Which ever road I cross out f the ones nearby, thers a real risk of being run over.

It's nothing to do with others moving up and down the steps. Doesnt stop me from almost falling down and almost falling into mums car.

I see this forum hasn't changed. Some of you are so judgmental and have no idea what you're talking about.

My friend lives on a main road, in fact once earlier this year she was nearly run over by her GP!

nannytone_2

as a blind person myself, i feel i have a fair idea of the visual issues faced.

you live near 3 main roadfs?
are there no crossings?

i live in a mrjet town, and there is 1 pelican crossing and a couple of zebra crossings.
i go out of my way to use these, as crossing anything other than the smallest of roads is impossible for me'
you reallu seem to be highlighting the issues ( which are real) but ignore the suggestions that are made.
i feel that you are letting your disability become your whole life, rather than being a person that happens to have a disability.

services are poorly co ordinated for sure.
my GP asked if i wanted her to refer me to social services a few weeks ago, even though i have had a social worker for over 2 years. you need to be pro active, because the services wont come to you unless you push for them