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Please advise - desperate

amberzakamberzak Member Posts: 6 Listener
hi. 

I have ehlers danlos hypermobility type. I’ve recently been using a wheelchair and use it daily. I’m buying an electric wheelchair as my husband starts teacher training in September so won’t be around to push me. 

So this is my livimg situation: we live with my husband’s dad and have done the whole time we’ve been married (7 years). Husband is 41 and I’m 34. 

The house is in a serious state of repair. My whole Cieling is covered in Mold and is all black. My husband has bad asthma. It affects him. 

But my main problem now is that I can’t get up the stairs to bed any more because my mobility is so bad. We don’t have any hot running water and haven’t had it since april last year. We don’t have central heating instead it’s storage heaters which makes me ill. And the very bad winter we had I’m sure has contributed to my sudden decline in my health (I’ve gone from being able to walk with a crutch for 20 minutes straight to barely being able to walk 20 meters and reliant on my wheelchair in about 6 months). I was going to bed shivering every night in the cold (after taking 10-15 minutes getting upstairs by pulling myself up) and before Christmas, an American friend sent me an electric blanket. 

I don’t need to use a wheelchair indoors yet but I have fallen over twice this week alone. And I can’t leave the house in my wheelchair independently because I can’t lift my chair over the threshold. It’ll be even harder with the electric wheelchair. 

My father in law won’t evict us because he doesn’t want us to move out. But I can’t stay living like this. He’s had a year to get the hot water fixed and he hasn’t. And the advice of the occupational therapist said to use warm water. 

Ive not been brushing my teeth because the water is too cold on the toothbrush. 

The shower works, but I struggle to get into it without husbands help (even with the bath chair). 

Ive just applied for pip. I’ve taken a long time to accept I’m so severely disabled, and have been in denial (saying it’s just the cold weather). 

I asked on a facebook group about housing for disabled (a wet room would be nice or large shower with a seat as often my husband helps me wash). Lots of people came on to say they have been on the register for years and never got into a house. 

I honestly cant live here much longer. I mean, a wet room and flat exit from front door would be nice. But I would honestly be happy with just a place that hasn’t got black mould all over the roof and being ground floor. 

What can I do? Who is best to speak to? I’ve been embarrassed about the house so haven’t taken the occupational health therapist up on the home assessment (I’ve been using the disability equipment put in place for father in law). 

But my mum gave me a talking to the other day that brought me to my senses. She pointed out just how disabled I’ve become and that the house almost certainly isn’t helping. She said we should be a high priority on the lack of warm water and central heating alone (no heating at all upstairs). 

Please advise? 

Replies

  • sandyp196sandyp196 Member Posts: 133 Pioneering
    One thing I had to learn very quickly when applying for state assistance with finances and housing, is that you have to leave your pride and dignity outside the door for assesments and form filling. I ended up in thr most extreme poverty because I made out things were better than they were. It was a pride thing.  But it got me knowhere. You can hold onto to your pride and dignity as we all need that, but not when it comes to getting what you need. You need to let thr OT help you and invite her to do thr assesment and start the balls rolling. 
  • amberzakamberzak Member Posts: 6 Listener
    sandyp196 said:
    One thing I had to learn very quickly when applying for state assistance with finances and housing, is that you have to leave your pride and dignity outside the door for assesments and form filling. I ended up in thr most extreme poverty because I made out things were better than they were. It was a pride thing.  But it got me knowhere. You can hold onto to your pride and dignity as we all need that, but not when it comes to getting what you need. You need to let thr OT help you and invite her to do thr assesment and start the balls rolling. 
    I’ve been discharged from her now but I’m seeing my pain nurse on Thursday. Should I ask her to refer me to adult social services? Or should I see my doctor?
  • crippscripps Member Posts: 411 Pioneering
    It really is sad to hear how you’ve been living, i agree most heartily that one thing you learn is dignity and when you are disabled dignity gets left well behind. I like yourself have pride so when i was applying for disability payments i wasn’t getting anywhere so i gave myself a good talking too. It really is heart stopping but please bag up your pride and dignity and get what is rightfully yours, make a better life for you and your husband because nobody will help you but you. Please let us know how you get on and if you need help with anything this forum is the best place. ALL THE BEST!! 
  • peterpetepeterpete Member Posts: 37 Courageous
    Pride should not come before your welfare no one will judge you for seeking what your intitled too
  • crippscripps Member Posts: 411 Pioneering
    As you can see we’re all behind you. X
  • peterpetepeterpete Member Posts: 37 Courageous
    People pay tax for people who are less fortunate to get help. There is not one person who would judge anyone from getting help I hope you the best in life
  • amberzakamberzak Member Posts: 6 Listener
    edited April 2018
    peterpete said:
    People pay tax for people who are less fortunate to get help. There is not one person who would judge anyone from getting help I hope you the best in life
    I pay tax as well ;) I’m a self employed tutor. But I don’t do as many hours as I used to. Plus I’m an aspiring screenwriter 
  • amberzakamberzak Member Posts: 6 Listener
    so what’s my first move? As I said, father in law won’t evict us. 
  • peterpetepeterpete Member Posts: 37 Courageous
    Do you have kids if so your a priority for rent housing
  • amberzakamberzak Member Posts: 6 Listener
    peterpete said:
    Do you have kids if so your a priority for rent housing
    No kids. I can’t have them. It would be too dangerous for me to be pegant. We do want to adopt but haven’t put ourselves forward while we are living in this dump of a house. 

    Im just very disabled. 
  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    Have you contacted any housing associations or your local authority housing dept .  Maybe Shelter could advise - they have a helpline.
  • despondentdespondent Member Posts: 87 Connected
    edited April 2018
    My son is just finishing his PGCE (teacher training) He got £30,000 to live on. He said he would of gotten £34,000 this year. The point is, your husband will get £10,000 plus in September, could he not install central heating in the house, and get a ramp put on the doorstep. I guess you dont have to pay rent. Also when he qualifies he will be a key worker and they can get priority housing, or shared ownership. You do not say if your husband is backing you with his dad. Perhaps you should move in with your mum this winter to stop your health from detiorating further, your husband must support you with your health needs. Do you get PIP, this would help you become a priority need with the council and enable you to get taxis to venture outside, or use the services of Dial a Ride service.
  • amberzakamberzak Member Posts: 6 Listener
    My son is just finishing his PGCE (teacher training) He got £30,000 to live on. He said he would of gotten £34,000 this year. The point is, your husband will get £10,000 plus in September, could he not install central heating in the house, and get a ramp put on the doorstep. I guess you dont have to pay rent. Also when he qualifies he will be a key worker and they can get priority housing, or shared ownership. You do not say if your husband is backing you with his dad. Perhaps you should move in with your mum this winter to stop your health from detiorating further, your husband must support you with your health needs. Do you get PIP, this would help you become a priority need with the council and enable you to get taxis to venture outside, or use the services of Dial a Ride service.
    Hi. Not everyone gets paid so much for pgce. It depends if you’re a priority subject etc. And you don’t get it all in one go. And I’m going to have to reduce my work next year as I’m a private tutor but can’t drive so won’t be able get to my clients without him. 

    We were always going to move at the end of his pgce when he knows he’s succeeded and he’s got s job. But then my disability deteriorated suddenly. A combination of the very cold winter and a very stressful masters is what the doctors think. And now everything’s changed. But now we can’t seem to find any law on landlords responsibility for if tennent is disabled. And the prices of bungalows renting are just too high. 

    We do pay pauls dad rent. We also pay for almost all the the bills. And it’s been me paying for it all. 

    Ive never needed this much help before. Not daily. 

    Ive just got my pip form and posting it today. 

    I think I’m completely overwhelmed by the sheer speed of my decline. 
  • feirfeir Member Posts: 396 Pioneering
    You don't need to get evicted, you should have reported him for leaving the house in that state. Don't care if he is family, he is neglecting you and taking money in the process. The council can come out and check the property and see what needs doing,

    Is there any social housing for you to move into if you do get evicted coz if there isn't (and most places have nothing) then you're stuck in a B&B or hostel, or maybe with an even worse private landlord.
  • libbyminlibbymin Member Posts: 3 Listener
    The council can also force your FIL to put the repairs in place as he is your landlord. 
    Dont sit back on this...report it all and claim what you are intitled to. Xx
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @amberzak   Pleased to meet you Sorry what you are going through. You need to be strong the first thing. You need to start thinking about you. You are important.

    Also this is unfair your father in law does not want you to leave. You and your partner are paying for his lifestyle.

    Only you and your partner can leave, what is stopping you. I do not understand this.

    I have been in loads of renting homes but left a lot of them because of the state and condition.

    You need to also speak to your support get help and start to live in a home for you not for your father in law.

    If I sound harsh and critical not at all. Time to wake up. Am disabled mental illness had a landlady used my money to fund her lifestyle.

    Left so moved away, did the right thing. First thing was being strong and finding support from housing associations, from charities from organisations.

    Made a plan of action. Remember did this on my own. Found my own home through Housing Association. Made contact also with doctors and other support to get me a home.

    I know this is not easy. I feel for you. Understand all the issues. Had them previous landlords and the rest.

    Ask you self a question I am you what you do.?  Have all this I am a friend so what are going to tell me?

    Same as I have said.  You need to sort this out. For the sake of your health. Let the support you have see what is happening, let yourself say what is on your mind.

    I once found it hard to talk so wrote a letter to an ex landlord. After that he changed. Understand it is important right now today you need to sort this out.

    My concern is you.

    Take care


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  • whistleswhistles Member Posts: 1,603 Disability Gamechanger
    edited April 2018
    So you live with someone and pay them rent and they dont care if the house has hot water or not? Or they can't afford to get it looked into?
    Who is responsible for the maintenance you or them? 
    Why has your husband not said it done something? 
    Do not follow me, I don't know where I am going.
  • Jean_OTJean_OT Member Posts: 532 Pioneering

    Hi @amberzak

    Sounds like a difficult situation!

    So firstly I think you need to be really clear about what the primary aim is:

    Option 1) Do you want to get your current home with your father in law more habitable for you all?

    or Option 2) is your priority to move out into somewhere more suitable as soon as possible. Ironically, if you support your father in law to improve the house it may reduce your priority for social housing.

    For Option 1)  Self refer back to the local authority adult social care team and have a full assessment done of the house in relation to your needs as a disabled person, your fathers needs as an older vulnerable person (?) and your husbands needs as a carer. It may be possible to access a Disabled Facilities Grant for the disability adaptations. Care and Repair England can advice on other grants that may be available for essential repairs, heating etc:   

    http://careandrepair-england.org.uk/home-repairs/

    You might also be able to access charitable grants to get the work on the house done:

    https://www.scope.org.uk/support/disabled-people/search-grants

    Negotiate with your father in law that you will stop paying rent into his hand and instead use it to pay for the work that needs to be done to the house.

    Use the benefit calculator to ensure that all members of the house hold are getting all the benefits they are entitled to. Getting some extra benefit income might help with affording the work or giving increased entitlement to other sources of support: 

    https://www.scope.org.uk/support/disabled-people/benefits/check

    Ironically, if you support your father in law to improve the house it may reduce your priority for social housing.

    For Option 2: Get the environment health officer to inspect the house. If he feels it is unfit for you to live in get this in writing. Self refer yourself back to adult social care and ask for an urgent OT assessment of the house with a view to your needs, does the OT agree that your housing is worsening your condition? If  she recommends adaptations but your landlord (i.e. your father in law ) is unwilling to allow them to happen it adds weight to the argument that you need to be rehoused. Get written evidence from your GP that your housing is effecting your health. Then get the local authority housing officer involved and get on the social housing waiting list (council and specialist housing association) with a priority that reflects all the evidence that you have gathered from these different sources. You may still have a wait but at least you will know that things will hopefully improve in the future. 

    Good Luck

    Jean   

    Jean Merrilees BSc MRCOT

    You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist

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