Council housing for disabled parents -part2, is this hopeless?

[DoubleLifeIsALifeHalved]

So turns out the dept that was supposed to locate a suitable (adapted) home for me & Ds has never done this, will never do it & she (kindly) laughed in my face when I told her that's what I'd been referred to them for :(

Cut a long story short all this new support worker can do is 'help me fill out the forms' for housing register... Not find me a suitable place / one that can be made suitable according to the spec my council OT sent them, incl a room for ds (so i can make my bedroom easy for me vs childproof for him), & a room for a live in carer.

Huge blow :( was my last hope. Am trapped inside a one bed flat i cant even afford, w steps each side & no space/ permission for any modifications needed, no access to bath/ shower & limited access to toilet. People 'carers' steal from me when they come round as I can't keep track of things & they use the clutteredness & not putting things where I can get to them as cover for themselves... My mattress has gone moldy cos is damp in here & everything cramped so I fall cos can't twist properly. I cosleep with Ds as its the only way I can look after him/ ensure his safety during the night.

Basically was told to hope where there is no hope, & I can't see any future.

Was told I'll be in band b as that's where all disabled people are. I won't be able to view properties or bid on them if it's too much clicking/ reading. They laughed at idea of a 3 bed flat, let alone an accessible one.

I can't live like this... But I need to know honestly... There's no hope of me ever getting housing is there?

Oh no!

I think I have read a thread of yours before. It very much depends where you live. Social housing is plentiful here where I am, lots being built and readily adapted

And your caters are stealing from you! Dear lord.

*carers!

I'm so angry on your behalf

Don't lose hope, I think that while the housing situation is desperate at the moment you have been badly advised.

Who is this person? is she a housing dept employee?

Do you have any involvement from adult social services?

It sounds like you are being fobbed off.

It was adult social worker who told me about this mythical service! & refuses to give all hours assessed as needing for direct payments, for financial reasons (ie the council don't have the budget)

& says things like, you'll have a flat big enough for a live on carer soon & you can pay them per week not per hr do you'll get the care that way (err, no house to that, not to mention it being tantamount to slave labour, dont even get me started on minimum wage stuff)...

The council OT even filled out a form for this 'pretend service' of finding me a house :(

Am worried if I tell them how much am not coping, or how much of a worry I think the living situation is, they'll talk about taking Ds off me, as that seems to happen whenever i push for more help

I dont think its adult SS that is lying to you, I know people that have been helped in this way.

The form that the OT filled, was it a medical needs form from the housing dept?

This is really wrong, you are being fobbed off but I think its the housing dept doing it not that SS has misled you.

You should be a priority on the housing list, not band B.

Im going to ask someone I know a bit more and I will come back to you.

I am more mobile with older dc and I am not surprised, I was shocked and disapointed by pretend support and so called carers, I am sure there are great carers out there, my experience were of lazy, not bright, selfish or control freak carers who are not interest in your needs.

Oh amber leaf thankyou, any more info would be a v good thing. It's been a horrible shock as its been dawning on me that living like this is making everything so much worse & I can't get out of it myself... The OT seemed convinced about the scheme, but then the people that came to see me were v nice but just shocked to find that's why I've been referred to them. The housing people are actually a part of a housing association (the name is the area so prob should nt say it), & they are affiliated w the council but not part of it...

Mrsjrewing - hello! Sad you have had same experiences of carers. Derails own thread, how are you? How was the conference?

New carer starts on tues, hope & pray she's better. I hate that people can take advantage of me like this, I've turned into a really vulnerable person & I hate hate hate it. I feel so... So Powerless, & so reliant on people I know I can't really rely on, even if they are nice/ not stealing my stuff/ calling me lazy, they get stuff wrong or get my hopes up & crushed again. God I hate this. I swing from head in the sand to suicidal & this is all just plain WRONG.

How old is your child? Is it possible to move somewhere else in the country where there may be suitable accomadation?

Is the housing association one that has stock control of the previously council properties? Like is it xxxx housing association and they manage the local authorities housing stock?

Where I live its that sort of set up but the rules still apply.

If you're happy to PM me the name of the housing association/local authority and i'll have a dig around on their website, ive just done that for my local authority and from what it says on their allocations policy you should be in the second highest priority with just emergency priority above that level [which would be for serious danger to life type of thing] Im pretty sure local authorities follow v similar guidelines with regard to this sort of thing.

Just twigged you are the OP, I am rubbish at recognising posters.

I think you should contact the support group and pm me and I will give you some info.

I have a disability law woman's contact details, she was at the conference, will give you her details in pm.

Conference was very informative. I felt very tired and have been so depressed since. I eventually cried all day yesterday, no tears today and feel better.

It was seeing other people suffering, facing the reality of the condition etc, hard.

Did you know we can have the following?

Lower brain compression, Chairi I think it is called, seeing mri scans etc was very distressing. PoTS, aortic spliting and loads of other things I was unaware of.

Blooming depressing.

Hi, I wrote a very similar thread a while back so totally sympathise.

We had been on the list 12 years, got an MP to write to the housing twice, social work, Dr's etc. We eventually got a move and got told all sorts of lies.

Completely unsuitable housing and new HA agree we were misled and told me "they weren't allowed to keep us in this house". Apparently if you qualify for a medical priority they are not allowed to house you somewhere that is unsuitable! This is complete news to me but seems to be true, could you maybe ask the housing about this and get suitable documentation to prove what band you qualify for?

They had me down as band b, which is middle priority but realise I should be band A (highest), we've been here a month and have been told to fill out another new housing application, I said what's the point as it will take years and she told me it wouldn't as they wouldn't be allowed to leave us here if it isn't suitable.

Have you tried lots of housing associations and fight for medical priortity on all of them?

Get in touch with Carr Gomm
The council here have messed me around for months, trying to shove me into unsuitable properties, and now I have Carr Gomm's help, they've offered me an adapted three bed, ground floor flat in the middle of town.
I haven't seen inside yet, but from the outside it looks great.
The woman who comes to see me makes all the calls for me, knows the right people to speak to, has got me moving quotes, helped me fill in loan/grant forms, got repairs done on the flat I'm in now and will do anything else I need really.
They are brilliant.

Is that just in Scotland Netto?

I've no idea, I know Schro is in Scotland though so may help her at least.
I had no idea they existed, because no one told me till three weeks ago, yet they could have been helping me for 14 months and saved me a whole load of hassle and Council lies.

I looked at 'services in your area' think its just Scotland.

They sound great, hopefully they can help Shrodinger too.

I work in housing Doublelife. Have you acutally filled in your rehousing form yet?

Rules differ between authorites, but from looking at your post you are currently overcrowed, so this will always give you priority, secondly your DS is disabled with specific care needs, which again will give you additional priority and seems to be that you also have disrepair issues (damp).

Your first port of call should be the local authority housing department (they all have them even if they have sold off stock, in some instances a housing association or Arms Length Management Organisation (ALMO) will manage this on behalf of the LA) someone from their medical team will then assess you to determine your priority, not someone from social services. Usually this is done when you fill in the rehousing form and indicate your specific needs. Someone will usually then visit you for a further assessment. They will then determine your banding/group, this is pretty much determined by each LA. Again, from the sounds of your post you would be given the highest priority by my LA.

PM me if you want some more info/advice.

Thanks all, had a dip in condition (the no carer thing taking its strain) so hard to write much

Was originally told I wouldn't have to fill in housing form, as council OT had filled in my requirements to refer to this team (who were the housing associarion people). so could have done it months ago but haven't... The housing association people said they'll help me fill it in but who knows what they'll write, worried about band b seeming high priority but not being really, & them thinking all disabled people are band b.

also v worried that having special requirements means they will be even slower to rehouse, they said if I'd 'be willing' to relax the criteria I'd get somewhere sooner. Love to be willing to, anyone know how to become less disabled then? They siggested Like somewhere with a bathroom/ bedroom on different floors (fine, but only if I can get a lift put in, or how would I access it?!), or perhaps a first or second floor flat (think they've missed the point here!), or relying on a lift & living in a tower block (no! & def no, as I would have to rely on lift working all the time & also waiting for lift v painful, I know I'd most likely end up trapped in house, which defeats the point)

Will be pm-ing shortly thankyou. The housing association people also said there is some other scheme / waiting list for adapted houses only but didn't seem to know much more except they'd not recommend due to waiting times. Will find out the name of it.

Thank you Netto for posting that link, really struggling just now so it is a massive help.

Double Don't agree to relax the criteria, I'm proof of how messed up that can work out. We moved from a high rise and our problem there was the lifts breaking down, so stress to them that really doesn't and wont work. I was getting stuck in at the end every day/couple of days.

I'm sorry I don't have any more advice to offer, it's a horrible situation and I wish I could help. :(

Mrsjrewing, sounds overwhelming, hope you are ok now.

I know about chiari, interesting to know its being talked about over here, seems to be more understood/ believed in in the us? Kazak consultant (same clinic as prof Grahame) was v sceptical about it but it totally fits with the crippling neck problems. She says no link been proved, but I'd be interested in any new research coming out as it does make ALOT of sense. Am waiting to have neck MRI to see... But I think chiari mostly visible on sitting mri's which of course am not having...

Also yes POTS got bad for me this yr, on waiting list to see prof Mathias about that & general autonomic dysfunction. Did you realise that's a problem for you too at the conf? Ugh.

Now what is aortic splitting? A new one for me & sounds disturbing?

Double Do you have EDS?

Didn't know about Chiari, that was definitely an interesting read...

If you join the support group you can access members only section, Dr's who spoke will publish the latest research there in the next month.

Yes you must be upright in the MRI, it is pointless if you lie down.

Yup SchrodingersMew that's the one, you too? Quite a collection of us on mumsnet!

I mailed the social worker & OT & heard back from the social worker to say she will take my case to the welfare panel for priority for housing... Anyone got any clues what this means & whether it's likely to be helpful?

Still haven't pm-ed anyone, body is not in a good way, Ds had to go stay w my parents which is exactly what I didn't want to happen as he's really clingy & shakey due to amount of carers & chaos & he neeeds me :( however trying to think long term needs for him. I am staying at a friends who is looking after me in attempt for me to get carers/ housing/ hospitals in order before I go under completely. Will prob post again in chat on non housing stuff as the 'pedaling fast to go backwards' thing still happening.

One question on health though... Is it possible to get upright mri's on the nhs? My neck one that have been waiting for turns out the referal (that I delivered BY HAND to imaging department) has gone missing & I have to get consultant to do another. It's all a waste of time anyway as lying down isn't it...

Chiari just makes sense doesn't it... Wonder when it will become more accepted here.