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Wednesday, 15 July 2015

Dream house meets reality

So, we have the house, happy happy happy, now we move in, right?

Vacate our three bedroom housing association bungalow, making it available for another family who need it as desperately as we did eleven and a half years ago, right?

Wrong.

Smiler needs access to a bathroom. He can't do stairs. We've given him the living room for a bedroom, but naively assumed we could apply for a Disabled Facilities Grant to get him bathroom facilities.  

We were wrong.  

You can't just apply, of course not, whoever told you that? *incredulous tone of voice*  Oh no, here in Bristol we put you on a waiting list to be invited to apply.  Standard priority means you'll be on this list for aroundabout twelve months.  Then we invite you to apply, you apply, then we can take six months to make a decision, then if we're feeling a bit broke we can delay paying for a further six months.  You'll be fine without those facilities for two years, right?

Oh, high priority - well that's completely different.  It'll only be about five months before we invite you to apply.  

He's a child young person (gotta switch that in my head somehow!), therefore there is no means test, not that we have any means left over to test.  There is no debate as to his need, nor to what it will take to meet that need.  As a temporary measure, we've been provided with a commode and advised to strip wash him at the kitchen sink.  Trust me when I say this is not working.  

So he's still at the bungalow.  We're paying two sets of council tax, two sets of electricity/gas/water bills, two phone lines, insurance, everything.  And of course still paying a hundred and twenty odd pounds of rent every week for a bungalow that we only want for the downstairs bathroom.

I've read the legislation, put in plenty of FOI requests to try and work out what's going on.  I know I can make an 'uninvited application', but I also know that if I do they will make the decision sooner but release the funds at the same time as if I'd waited patiently on their list 'in the interests of fairness'.  

The legislation sets out a strict timetable for local authorities regarding DFGs, but these only come into force once you've made an official full application.  But what are you meant to do when you're effectively blocked from doing that?  Should I throw caution to the winds, cross all my fingers and toes, avoid ladders and black cats, hold my breath and hope to meet the partly whispered 'if you do the work before you get approved we won't give you any of the money (unless there are exceptionally exceptional circumstances)' criteria?  But surely everyone they label as high priority has these exceptionally exceptional circumstances?  Do they just assume you won't have the balls to risk it?  Do you think you could get some kind of agreement in principle that they would consider your circumstances exceptional and then start the work before you get proper actual official approval?  Surely the reason these statutory timescales exist is to ensure people with a genuine (and agreed) need for adaptations to their homes get them in a reasonable amount of time?

It's been suggested that I 'encourage' Smiler back into pads, as this would be easier to deal with without needing to get him upstairs.  He's been out of them for less that twelve months - how am I supposed to explain this to him?  How is the official advice to simply strip wash a teenager in the open plan kitchen of a family house?  How does that mesh in any way with respecting his dignity and encouraging his independence?  

I've phoned the Accessible Homes people - the council gatekeepers for the DFG.  They tell me they need to talk to their supervisor, the surveyor, the surveyors supervisor.   They tell me they'll be back in touch. 

I've written to my local MP - though technically with two homes I guess I have two MPs - maybe I should get the other one in on it too? - her office tells me they've contacted the council on my behalf and will get back to me as soon as they hear anything.

I speak to some of the big cheeses I come into contact with at the council through Bristol Parent Carers - they exclaim in shock - they can't be right,  surely?  There must have been some kind of misunderstanding...

But no.  It seems this is the case.  If you are assessed as being high priority, you still face a wait of five months before you can apply for the mandatory grant to adapt your home to meet your needs.  

How long without a bath or shower before my child teenager is officially being neglected by me?  How about with no access to appropriate toileting facilities?  Am I supposed to leave him sat in a puddle of urine at the bottom of the stairs, assuring him he is high priority you know, and it's only five months before we can apply, and he'll just have to manage?  That has to be unacceptable behaviour on my part, of course, but how am I supposed to avoid it?  I can't get him upstairs, and I can't magic him accessible facilities downstairs.  That isn't good enough - that isn't acceptable.  But then surely, the system and processes that result in that situation (despite my best efforts) are also unacceptable?  And what can I do about that?

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Please read on with this post to see what happened the day after I posted this one ...

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Super Busy Mum

3 comments:

  1. catching up here, why can't you stay in the bungalow? Sorry!

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    Replies
    1. The bungalow is a housing association property we've been renting for 11 1/2 years, but this year we inherited some money which meant we could buy instead. In bungalow my eleven year old daughter is sharing a room with her twelve year old brother, and school is an hours drive away, and is not extendable to add a bedroom. Also getting squished - as Smiler has grown, so has his equipment (he's almost 14) - wheelchair, walking frame, postural support chair etc.
      Thank you for the question - I hadn't thought to explain!
      L x

      Delete
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    ReplyDelete

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