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Re housing and adaptions

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  • November 25, 2015 at 10:00 pm #118836
    Re housing and adaptions

    Hi my 12yr old son has DMD and he has been living in my living room for two years now as can no longer walk so he cant acess his bedroom, bathroom or toilet so i have to bed bath him, goes the loo on a mat/bottle an we dont have room for a hoist ,he uses a slide board at the moment to transfer.The house we are in is too small to adapt , another house i was interested in i was declined because it would cost too much to adapt, and the bungalows were too small.
    I got my local MP involved and things started to move and Back in feb 2015 after lots of fighting to get a more suitable home i won a two bed house that is larger than the one we are in as the local bungalows are too small for his needs , i viewed it in Feb and they went through what adaptions they would need to do etc ,i signed the tenancy papers etc and the OT gave them 3 plans on what he would need etc and several months later they were comin up with excuses to not put the through floor lift in but 3/4 weeks ago they said they would go ahead with it and then today i get a letter saying that they not going to go through with the adaptions as it wasnt suitable long term so it took them nearly 10 months to tell me this ! very upset that my son has to suffe because they dont want to pay out! :cry:
    Anyone have any advice on this subject ?

    johoruz
    Participant
    Posts: 1
    Joined: 09/10/2014
    November 26, 2015 at 10:07 am #118841
    Reply To: Re housing and adaptions

    Hi There,

    I’m sorry you’re going through this, if you give the advocacy team at MDUK a ring on 0800 652 6352 (Mon-Fri, 8.30am-6pm) or email info@musculardystrophyuk.org they’ll be able to help you with this.

    more info on the advocacy service can be found here here

    Best wishes, Elly

    AmbassadorElly
    Participant
    Posts: 5
    Joined: 05/02/2015
    December 12, 2015 at 9:30 pm #119387
    Reply To: Re housing and adaptions

    My advice would be to keep as calm as you can (I know it’s hard!) I have 2 sons with DMD and the adaptation process took a VERY long time in my case (7 years from OT plans to completion!). Luckily I was able to buy a house that would be a good candidate for adaptation, (another house in the cul-de-sac had already had it’s garage converted – so a precedent had been set). But it still took a LOT of work in order to get things going…. My local council had the plans framed on their office wall it took so long to see through :-) However, having determined OT’s makes a MASSIVE difference.. my wife and I would still be waiting for things if it wasn’t for our OT’s who NEVER gave up despite every challenge. Stay strong, and keep in regular contact with the MP, OT’s and the muscle team looking after your son… The consultant may well be happy to write to whoever is holding things up with a ‘kick in the behind’ kind of letter… But the most important thing for you is TO NOT GIVE IN!!! you know the kind of place you want for your lad, he does deserve a home environment he can be comfortable in… just keep nagging at them.. the squeaky wheel gets the grease so they say! hope this helps..

    Mike Taylor

    Jinxster
    Participant
    Posts: 4
    Joined: 16/04/2013
    December 13, 2015 at 12:31 pm #119395
    Reply To: Re housing and adaptions

    Once again, sorry you have these awful problems.

    Totally agree with Jinxy above, the O.T. People are the
    ones to help you on these issues. They know the subject inside
    out, what is necessary and how to get things done. They have totally
    changed my life in the last year.

    Keep at it!

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
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