Acessible Housing + Moving House

[freewheeler]

Where I live at the moment (1 bed ground floor flat in East London) is not totally wheelchair accessible, only partially (and a small part at that).
But because I was newly disabled (and so didn't know much about accessability) when I signed the contract I thought the flat would be o.k.

Now, nine months into my tenancy, I realise it's not o.k at all.
I've now been told I can't have a ramp because it's a listed building (yunno, a really old building that has to be kept looking old), I also can't have grab rails at the front door for the same reason.

Even with a ramp and rails, the front door is not wide enough to accept any wheelchair that is even average size, let alone large. My current chair will just fit in, but my curet chair is actually too small (narrow seat) for me, so I can't wear certain clothes, orenjoy too many biscuits.
I also can't have a wheelchair using friend over, unless it's small/folding and they can get out and walk a bit. It may seem like a small problem to an able-bodied person, but to me it's huge.

I can't use my chair in the house because a lot of the things (bathroom, kitchen cupboards etc.) are not accessible. Mostly I can get by without the chair when I'm indoors, coz it's only a few steps at a time. But sometimes I get so bad I could do with wheelingaround indoors, but I can't.
I also can't have a wheelchair using girlfriend, unless she's exactly the same disability as me., and exactly the same chair size.

So, basically, my current flat is very restrictive. And, although it's a great flat otherwise (lovely big sash windows so lot's of air and natural light, good bview, great location, yard round the back, no damp problem etc. etc. I'm thinking I should request a move.
Now moving house is hard enough when you're not disabled and chronically, severely ill.But I'm all of the above, and bloody poor (still no DLA, I have to appeal). So how do I get the help I need to move???
Do Social Services offer any help?

It may seem premature to be asking this question before I've been offered a flat, but once they have, there's not enough time to ask, get the answer and organise everything.

Any ideas anyone?? Also, anyone know of housing assoc./charites etc. who have w/ch access. housing in London??

[Funky-Fran]

Hummm sorry hunny i think i might move this to 'disabilities' because its a more aplicable

[PurplySparkleyJoey]

Hey you!! How are you diddelin?? Well i hope!!

Right - housing! As you know im in a hostel for homeless people at the moment weighting for something to come up from the council.
Are you housed by the council now hun or is it private?

I think your best bet is to apply to your local council and tell them that you are not in a sutable place for your needs.
Next you need to call social services and ask for a social worker to come out and see you. They will be able to fight your corner so you dont need to. They can tell you more about housing in your local area & what support they could put in place if and when you need it.
Then i suggest you call your local OT department. Ask for some one to come out and do an assessment. They will then right to your housing officer expalining what sort of accomodation you need .. ie, ground floor flat or preferabably a bunglow, need to shops & public transport, 2 bed rooms so you can have carers to stay if need be, wheel chair assessable bathroom/kitchen.
The OT will also do a follow up appointment making sure you have purching stools, shower chair, rails & bars up and all that!
Talk to you doctor, ask them to write a letter expaining that your condition is long turm and your not going to recover tomorrow, get his to expain how your condition effects you & why you need specilist accomodation.
Citezens advice are a worth while group to help out, they might be able to put you in touch with more housing advice people or charitys or association that can help out.

If you need any thing else the DRC night be able to help .. or check some more disability site as they might know a bit more than me!!

My only bit of advice is to PUSH HARD!!
Good luck hunny xxxxxxxxxxxxx

[freewheeler]

Thanks for the advice Jo .

I live in a housing association property at the mo. I do have a social worker, but she's very unapproachable. She often tells me how much work I always am, and how I always make her job even harder (how I'm not quite sure). She also thinks that I should be the same as every other w/ch user.

e.g I told her that I felt at increased risk of attack since becoming a w/ch user. Her reply was (laughing) that one of her other clients is a w/ch user and he is not at all scared to go out by himself.
Well good for him, but perhaps he can build up large muscles in his upper body and learn boxing/self defence etc. Myself, I have severe m.e so most days can barely manage to push myself round the corner, let alone do weight-lifting, boxing and the like.

I did go to a radical feminist womens' self-def. class a while back. But my M.E made it difficult to keep up my attendance (+ do all the moves). After a month I was sicker than ever, and had othrow in the towel. But hey, at least I tried. .

So, as I said, my social worker shoves all w/ch users in the same box, and won't listent anyone who won't fit it. I want to complain, but am worried that if I do I'll lose the hep that I have been given (home help, meals on wheels).

As for my housing, I spent the Christmas + New Year break searching the web for info and w/ch acess. housing. I found a few good 'uns and e-mailed them.
The Housing corp sent me a list of housing assoc. that have w/ch acess. homes in London (borough by borough) so that's a good start.

When I get my computer, I think I'll write a short guide to finding w/ch acess. housing (esp. London) and maybe Fran/Jo will help me find a section for it on the home page (yuno amongst the coming out, good sleep etc. articles).
Until then, I'll pop the web site addys in the links section.

Oh, P.S I've also contacted my housing assoc. and requested a transfer to w/ch acess/ flat. Still waiting for an answer on what they have, and roughly how long the wait wil be.

[freewheeler]

P.P.S I did ask for an O.T, but was told (by soc.serv.) that I can't have one until I have a diagnosis (even though I've already been waiting, i.e ill for over a year and a half). I asked them how I was supposed to manage until then (coz life is v.difficult without the gadgets/hand rails etc. that you need isn't it? And they know I'm at risk of falling over at least every week without the gadgets).

The answer was "tough, you'll just have to wait (and keep falling over, being dependent on people who abuse that dependence etc. etc.). Disgusting innit?!

Lastly, my doctor should give me a supporting letter and be helping me get a diagnosis. But she doen't believe in M.E, not as a physical condition/illness anyway. No, she's stiking to the stone-age view that we're all hysterical (pur-leeese). And of course hysterial people don't need hand-rails do they? (though weirdly enough she did agree to refer me to the wheelchair clinic..... I don't understand her at all.

So without my G.P's support, it's unlikely I'll get very far with any of the equipment/beefits/support/housing that I so badly need to be as independent as poss. Doesn't she raise that she's condemnming me to being wide open to abuse, being taken advantage of etc.??I've tried to tell her, but she just smiles at me as if I'm mad.

Too much weight is attached to diagnosis and what your G.P says. (instead of what you say). Has anyone else had a similar experience?

I think, Jo, that the most important thing at the mo. might be to get a sympathetic G.P. But how to find one, well, I just don't have a clue.

Answers on a postcard to............

[PurplySparkleyJoey]

Oh petal, everything is such hard work isnt it i wish i could come down there and kick some butt my self!!! *hiiiiiiii ya!!* ... *fall's over in a heap*

I think you seriously need to think about contacting a volentery angancy and asking for an advocate to come out and help you. That is what places like that are set up for. And they might have enough eight behind them to get you help before your 99!!!!

I think you would be wise to Email/PM Gem on the board, she works for the disabled rights commission & might have a better idea than i do as to who to contact.
I believe though, that DILEuk is a v. good place to get in touch with. I will have a dig & see if i can find any URL's or telephone numbers for you.
Citozens advice might be a good place to start too, although im not sure if they offer advcosy they might know who to contact?

I dont think there is anything else you can do, ON YOUR OWN ... no matter what your GP/social worker says, you need help and your not getting it. You have to push, and in your current condition, you cant. Thats where some butt kicking person comes in.
They will be able to address you social worker, possibley your GP & deff your housing soc .. have you applyed to the council for accomodation on the grounds that your flat is not sutable for your needs?

A houseing artical would be great when you get round to writing it, i am terrible at sitting down and doing stuff so help from other people is muchly apreciated!!
Love always xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

[freewheeler]

Hiya Jo !
Thanks for the reply. Informative AND funny as ever (hiii ya, falls over i heap, yup that's pretty much me too! LOL).

*Yeh, I have e-mailed my council (Tower Hamlets) to ask for a form to apply for suitable housing).
*I've applied to my housing assoc. to be transferred (+told them of my needs)
*Erm.....I've e-mailed some housing advisory services for a list of housing assoc. in London that have w/ch acess. housing.
*I've spoken to my social worker recently and explained the need to move, get more suport, a diagnosis (I've got worse recently), an OT etc.

Guess what? I ask for more help, and admit to forgetting to turn off the cooker, lock my front door when going out, and she says I'll have to move to supported housing!
Argggggh! I spent over 2 years getting out of those places, and she wants to shove me back in!

(in my experience, supported housing doesn't offer that, it offers nosey, sometimes perverted workers who have the key to your room/flat and use ti (without any warning) daily! They claim it's for your benfit, but I didn't find that it was (esp. when it's abloke). They also would bang on your bedroom door past midnight, demanding that you got up right then and went and finished washing up the milk bottles (for f@#*'s sake!)

So, I really do not want to go back down that road again.
I should never have admitted that I'm really beginning to struggle to my soc. worker. BIG MISTAKE!

Then she told me (again) how much trouble I was, added that now she knows that I'm a coward (coz I said that coz I keep forgetting to go to G.P appoinments, I have asked th G.P to just ring me to discuss things). And, why can I not be more like her other cliens?
She says that they have disabilities that make mine look like nothing, but they still hve that independent spirit, and she admires them, so why am I not like them?

What the!!!! After the call ended. I buried myself under the covers, cried and prayed to God to not let me wake up.

Where do they find these people? And how on earth does my soc. worker think she is helping me?

Jo, you're right, I definitely need an advocate, someone to kick butt. The soc.worker an GP are taking advantage of me being ill, alone, dependent, and not knowing/being able to enforce my rights.
t makes me so sad, and angry, and I'm fast losing faith in these people, and life itself.

How did I go from being a fit+healthy cycle-courier/squatter/ totally indepedent person to where I am now? Why did it happen? And if "what goes around, comes around", then what did I do so wrong?

Yeh, sure i'm no angel, but no matter how hungry I've been, how cold, how desperate, I've never mugged anyone, attacked anyone without provocation, well, I've done what I could to help people.......you get the picture.

Ramble, ramble ,ramble. groan. yawn. better go before I get edited under the "protection of GLAD user's mental health act"

Mustn't let the b'stards grind me down, mustn't let the........ (repeats like a mantra)

I think I'm losing it.

[PurplySparkleyJoey]

((((((((((SWEETHEART!!))))))))))

You need some one to do some serious ass kickin!! You shouldnt be being treated this way .. diognosis or not, wheel chair bound or not .. it doesnt matter .. the point is you are VERY ILL and should be looked after the same way as any other ill person would be.

You going to have to think seriously about making complaints to people ... that might start to get the ball rolling!!
I would be more than happy to write letters on your behalf .. you just have to shout.
I have asked Gem to have a look at this post, and im sure she will soon as she gets a chance :-)

Untill then, keep your chin up and keep hunting for an advocate
Love always xx

[freewheeler]

Yes, I must find an advocate. I'm just finding it hard to think logically recently. Have had a fever most of the day for a while now (almost a week, dunno??). It seems to be frying my brain.
It's wrong of the social worker to try to push me back into supported housing at the first mention of difficulties do you not think?
I'm esp. scared of soc. serv. About a year ago, my nephew was taken into care by soc.serv due to his mother (one of my sisters) not being able to cope due to paranoid schizophrenia. He wasn't being looked after too well at home, but the "care" he has received under soc.serv has been 10times worse. He OFTEN turns up at school BEATEN and BURNT. His Mum, and Grandma have made many complaints regarding this to the soc.serv. They have been told in no uncertain terms that IF ONE MORE COMPLAINT IS MADE, THEN WE WILL NEVER SEE HIM AGAIN.

I've seriously considered kidnapping him back and running away with him, to protect him. But I can hardly get out of the house, it'd never work. Why do I have to be so useles an Auntie? And they wonder why people stuff themselves full of booze,drugs, and then commit suicide? Well, it's bloody obvious really, hell is not below us, it's right here on earth.

Have any other GLADees sucessfully resisted attempts to have them institutionalised? Esp. when it concerns being moved because of forgetfulness/confusion/ (e.g leaving the cooker on, forgetting to lock the front door?)

I'd really appreciate stories/info on this matter.

[PurplySparkleyJoey]

I seriously sugest you DONT run off with your nefue! He might be in worse accomidation now, but there are better ways of going about it. You would put him in more danger by taking him away than you would be by leaving him hun, even though it might not seem like it.

I think social services have a right to offer you sheltered accomodation .. you dont have to take it and as far as they are conserned its a very expencive way for you to live. It actually cost' them more to keep you there than find you a house .. so they prob think they are doing you a favor!! Its up to you if you take the placment or not.

Just keep pushing, things will fall in to place soon you just have to sit tight for a bit longer.
I sugest you contact CAB as soon as possible and ask for some one to come out to you sweet heart.
Love always,
Jo xx