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Thread: Changing Housing needs and donít know what our options are??

  1. #1
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    Changing Housing needs and donít know what our options are??

    My husband was diagnosed in December 2018 aged 48, at which point he walked into the clinic. Just a few months later and his mobility needs are significantly impaired. He has completely lost the use of his left leg and has foot drop and is now getting weaker in his right leg and upper body. He walks very short distances with crutches and we use a borrrowed wheelchair for any distances. He no longer comes out shopping etc although we have bought a cheap mobility scooter which he occasionally uses to watch our childrenís football matches. We live in a private rented conventional house with a through lounge diner and downstairs wc. He is now unable to manage the stairs without me physically stood behind him pushing up each leg individually, which not only puts a lot of strain on me but if he fell he would absolutely take me with him which is rather worrying. It is likely we will be putting a bed in the dining area of the downstairs sometime soon but this is not ideal as he will lose all of his privacy and have no washing facilities. We have been very well supported by our physio and OT and have had some adaptations to help around the home including raised toilet seats and crutches and we have an appt in a couple of weeks with wheelchair services so cannot fault the services.

    To add to our woes after approaching our landlord to see what adaptations he would be happy for us to make, and we were completely honest with him as to the situation he decided that he wanted to sell the house and he will therefore be giving us notice although we donít yet have a date

    Knowing that my husband will soon be giving up work and potentially myself becoming his Carer and therefore cutting down my hours and not earning the same amount, we realistically will be unable to afford another private rent.

    When you fill in application for housing association and the like and put in our salary we go straight to the bottom of the list as there is no box to fill in for changing circumstances.

    We do not know when we will need to move or when his condition will change again and if so how, but we do know that things seem to be deteriorating very quickly and we cannot manage in our house for much longer but cannot find anyone to help with what are our options to move this forward.

    Has anyone else found themselves in this situation or can advise who we can talk to, to get further advice please, Iím stuck in this rut and feel like I have the whole world on my shoulders not only coping with the MND but this as well

    Any help appreciated

    Claire

  2. #2
    Forum Member Newbie17's Avatar
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    I’m so sorry Claire. That’s more than anyone should have to cope with
    There are lots of very knowledgable people on this forum that I’m sure will be able to offer advice and points of contact.
    Have you spoken to the mnda?
    I hope you soon get the help and support that you so need.
    Love and a big hug
    Helen x

  3. #3
    Forum Member Kayleigh's Avatar
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    Hi Claire,

    I feel for you and your family. I was approx your husband's age when I was diagnosed last year, and there is enough for the family to come to terms with, without having to worry about housing and financial issues.

    I cannot advise you from experience, but it might be possible for your husband's OT to support your housing application - perhaps with a letter recommending that you are made high priority for housing on medical grounds, and also because you are going to be made homeless and can no longer afford to rent in the private sector.

    I think there are some people on this forum who have moved from renting privately into council or housing association accommodation, and they may be able to advise you from their experience.

    If you havn't done so already, you could also phone the MND connect helpline and/or contact you local MND Regional Care Development Adviser for advice:-
    https://www.mndassociation.org/getti...ent-advisers/#

    I am sorry that you have got so much to deal with. Hopefully wheelchair services will provide your husband with an electric wheelchair, which could help with his mobility indoors as well as outside. It might also be possible for his physio to provide him with a rollator, which might be less tiring than using crutches.

    Sometimes the MNDA can provide funding towards the rental of a stairlift, but I think an application for this funding would need to be made via your husband's OT.

    Love and best wishes to you and your family.
    Kayleigh xx
    Last edited by Kayleigh; 25th February 2019 at 19:13.
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  4. #4
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    so sorry to hear of your predicament Claire. I too worry about the suitability of our house. we dont even have a downstairs loo. Im sure someone will be able to offer you some advice

  5. #5
    Hello Claire, I'm very sorry about the situation you are in, we were in that same predicament a couple of years ago.
    We owned our own home but couldn't buy anywhere suitable as we live in a very expensive area. We got a very good letter from the OT and that sent us up the social housing list. We were offered the next suitable bungalow.
    Could you phone social services as well? A few good letters wouldn't harm.

  6. #6
    Just thinking I should be more specific in my response. We live in Cumbria so had to apply online. I think the form was fairly simple. We then got a letter from the OT saying our house was not suitable and could not be adapted to be made suitable. We sent this letter off and a couple of days later phoned and checked they'd received it. We were deemed then to have a medical need.

    All the housing associations here list available properties weekly, we had to apply for the one we thought was suitable. This was just ticking a box. They call it bidding but it doesn't involve money.
    We were offered the first property we bid on. When the housing officer rang he said it was because we had a medical need. 28 other people bid on the bungalow we got.

    From start to finish it took about 4 months, even though we were offered the property fairly quickly it had to be refurbished.

    Anyway I hope you find something suitable. Good luck.

  7. #7
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    Thank you Music Mans Wife

    Thank you for such great advice, we have the OT coming out next week to assess the house and hopefully write a report which we can add to our housing application so fingers crossed this may help although bungalows in our area are few and far between? I will try Social Servicees as well, as you say more letters cannot harm. Fingers crossed x

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    Thank you Helen, much appreciated x

  9. #9
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    Hi Kayleigh,

    Thanks for all your advice I will contact the MNDA advice line to see if they have any further suggestions.
    Will wheelchair services opt for an electric chair straight away in your experience?
    Claire

  10. #10
    Forum Member Kayleigh's Avatar
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    Hi Claire
    Sometimes a manual wheelchair is issued first. I expect it depends on what your local wheelchair services assessment criteria is. Your husband's physio or OT might be able to advise you about this.
    Love,
    Kayleigh x
    Last edited by Kayleigh; 26th February 2019 at 12:26.
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