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

97 replies

DoubleLifeIsALifeHalved · 18/09/2012 23:30

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?

OP posts:
DoubleLifeIsALifeHalved · 22/09/2012 01:03

Oh will it make a difference if I was brutally honest on housing form & said I am suicidal due to housing (& other) issues? And that the house is making health worse & I am losing independence & ability to parent my baby (due to the awfulness of house, though other things like awfulness of health care system also contributing...

OR

Will mental health & independence/ parenting just make everything worse??? I don't want to open a can of worms or risk anyone taking my baby, cos that's what am trying to prevent in the first place (not that childrens services are involved, it's just that me saying I'd die before I let anything bad happen to Ds kind of takes on a different meaning when am in a high risk kind of environment, want that phase to be a sentiment, not a prediction...& I realise suicidal thoughts are counter this argument, which is an indicator of how desperate I am & yet still Ds comes first, as he always will.)

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rhondajean · 22/09/2012 01:18

Re Carr gomm

I used to work for the woman who is the convenor.

There is one in England but its a totally different organisation.

The Scotland one I can vouch for big style (it wasn't them I worked for but I got to know lots about it).

If you are in England it wouldn't do harm to contact the English version and see if they do similar.

SchrodingersMew · 22/09/2012 12:37

Double Yup, EDS III, heart arrythmias that they were investigating as POTS, all the usual that goes with it. :( So I really do understand how hard it is to get them to take you seriously.

RE: Saying you are suicidal... I eventually wrote on the HA public FB wall all the problems and that I was living in hell it had made me depressed and I wanted to die... They sent me a PM saying they wanted to help and we got an offer the day after that. I stressed on it that it was the housing situation that was making me depressed and that I was worried for my DS safety.

Rhonda I phoned them yesterday and they said they don't help with housing. :( We had boys throwing stones at the windows last night while shouting at me (I was actually sitting at the window!) Last straw.

MrsjREwing · 22/09/2012 12:44

Is there a thread anywhere for EDSIII people on MN? Not everyone can afford membership.

NettoSuperstar · 22/09/2012 13:15

They are helping me with housing Confused
Just earlier this week the lady who visits me was calling the HA to make sure the blinds and flooring are left in the flat for me.
She's coming again on Monday morning, I'll see what I can find out for you.

SchrodingersMew · 22/09/2012 13:24

Is it maybe because you need a live in carer? I find there's a lot of help we don't get as I moved with my DGM and she looks after me if I need it.

If you could ask that would be great. :)

Mrs There is an EDS/HMS thread running on MN somewhere but I can't find it. Confused I find it runs to quickly for me to keep up with. Blush

NettoSuperstar · 22/09/2012 13:52

I have no idea, but I don't have a carer atm because I don't have an extra bedroom for one, I will have in the new flat.
I will ask her though, is it you who is disabled?
Do you get DLA?
(sorry I should know this, but have forgottenBlush)

SchrodingersMew · 22/09/2012 14:14

I don't (atm) get DLA, I applied but they sent me a letter back saying I was turned down because I don't have any mobility issues Hmm, the "Dr" that came to assess me done it in my living room, on my couch. The furthest he made me walk was about 2 metres and he kicked my cat!!

I am re applying as I can barely get out of the house now. :( I can't even get to the shops when I am in pain.

NettoSuperstar · 22/09/2012 14:52

Does your council have a welfare support officer?
I got ours to fill my forms in for me.
I didn't see a doctor then, but had just had an ATOS medical for ESA, so think they used the info from that.
I got it straight away, then went back for high rate care and got that first time too.
I think I'm one of the lucky (ha!) ones.

NettoSuperstar · 22/09/2012 14:54

Definitely re-apply though.
I can only go out some days because of my car, and I will drive over the road to the shop, just so I've been somewhere.
Without my car I'd be stuck inside for days or weeks at a time.

SchrodingersMew · 22/09/2012 15:04

They do but they are off just now, they said they would sent me a letter with an appointment.

I've had an ATOS medical and they agreed I couldn't work, my advisor I seen even told me they wouldn't push me to use the work support services if I didn't think I could do it.

A car would be a lifesaver, I would be able to go to the shops on my own, take my DS out, I could keep the buggy in it which would mean getting out would be a million times easier. :( I'm stuck in loads now when I don't feel great. :(

I'm being sent the DLA forms again, I will appeal this time if needs be.

NettoSuperstar · 22/09/2012 15:25

Absolutely do, my car has changed my life, I love it.

SchrodingersMew · 22/09/2012 15:26

I can completely understand that, I am definitely going to fight them on this one not that I am likely to win.

But yes, sorry OP for hijacking your thread. :o

OddGoldBoots · 22/09/2012 15:44

I have CM but mine is only type 1 and only mildly symptomatic so I've not had surgery directly on it but I have along with it a tethered spinal cord which has needed decompression surgery. I had my treatment at the Royal London and others with me were having Chiari surgery and the doctors did seem to know what they were doing, if anywhere will do an upright MRI (and as importantly know how to interpret it) then I would think they would.

rhondajean · 22/09/2012 18:28

Schro - just catching up with this.

I can email the convenor and ask if carrgomm or any other organisation she knows (she is steeped in the sector and helping people!) could assist if you want?

I'd need a couple of details about what you need - they don't do housing but what you actually sound like you need is support to find housing from them yes?

rhondajean · 22/09/2012 18:28

Should have said -pm me if you want.

SchrodingersMew · 22/09/2012 20:41

Rhonda I will PM. :) Thank you. x

DoubleLifeIsALifeHalved · 23/09/2012 01:18

Oooh good news for schro? Hope so I do.

Am intrigued by the Chiari thing as I have all external indicators but the rheum (worked in prof Graham's clinic) said she's only heard of one case & when it was investigated it was asymptomatic / not responsible for the pain. Hummm.

Anyone know how expensive back injections are privately? My gp won't action any referral my consultant has asked for (so about 4 just not done, as I've had too many?!). So thinking to go private...

I've forgotten who am supposed to pm so here for anyone who cares... It's hammersmith & fulham council, & shepherds bush housing association.

Going back home tomorrow & Ds coming back Monday. Don't want to go back to my prison flat :( don't want to be collapsing & suicidal again and I really really don't want my Ds care & safety compromised.

Noticed before I left that there is a vegetable knife missing. Don't know how long for & don't know if it's been thrown away or it's lying in toddler reach waiting to hurt him :( crying again even thinking about it , how can I sort that out?

OP posts:
DoubleLifeIsALifeHalved · 23/09/2012 01:20

Eds thread is for children w eds do I can't really post on it as Ds not showing signs (thank god)...

Should I start 1 in chat & we can do parent w eds support?

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RedHelenB · 23/09/2012 07:18

Who's bringing your son back? Ask them to have a good look round for the knife.

Surrealistrhinoceros · 23/09/2012 08:07

Have you had any legal advice? I'm married to a specialist housing lawyer (not in London) and he has fought a few cases like this for tenants.

You could try a law centre if they still have one,or a specialist housing law firm of solicitors, or Garden Court Chambers are housing law specialists.

Good luck.

SchrodingersMew · 23/09/2012 16:52

No there's a thread for all us Adults with EDS/HMS somewhere too!

I will look it up later and PM you?

SchrodingersMew · 23/09/2012 16:53

Also, the Prof' I seen said that while my DS may have EDS he may not show symptoms as it is far rarer in males (something to do with hormones).

MrsjREwing · 23/09/2012 17:07

do pm me

DoubleLifeIsALifeHalved · 24/09/2012 00:51

yes please tell me too...

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