Autism Social Housing improvement needs — Scope | Disability forum
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Autism Social Housing improvement needs

knew94 Member Posts: 2 Listener
edited July 2021 in Autism and neurodiversity
Hi I wonder if anyone could help me out or point me to somewhere. 

I currently live with my Mother and 3 younger siblings who are all Autistic, of which the oldest is just about to make their first steps to university (Although remaining at home) which is huge for us!   

We currently live in Council Social housing and have done so for over 12 years. My Mother and siblings love the area due to proximity to family, friends and schools. Yet we live in seriously inadequate housing with severe issues that are impacting on all our lives. Moving is difficult due to the stress of moving and the impact this will have on my siblings. 

Currently we have our Kitchen, if I can call it that. Which has a sink unit and one small counter top. The room is so small (1.2m x 2m) that we are not able to put worktops in or cupboards. This is not an adequate kitchen for our needs.  

The bathroom is on the ground floor next to the kitchen. The walls are crumbling from the floor upwards, the bath has collapsed and the bathroom has no windows for ventilation. So you can imagine the levels of mould. My Mother and me, every week have to wipe the ceiling and walls down with Mildew every week. This is causing issues for my Mother who is a severe asthmatic, myself and the three siblings. Who sadly love spending a long time in shower as it helps them to calm down and unwind for the day. The level of moisture has affected every wall downstairs and the living room floor has started to partially collapse nearest to the bathroom due to the severe damp and moisture. 

We keep being told our house is on the list for the modernisation program due to these issues. Yet 12 years have passed and nothing. Where others on the street have had these works carried out. Literally this can't be right? The council always states that if we have any children with disabilities we will be a priority, my Mother states "Yes, three children with Autism" and the Council states this disability isn't a priority for us! We have been waiting for 12 years now! 

I have asked to carry out this work myself bringing experienced professionals in and the response from the Council is you need permission. We ask and they refuse on the grounds that we need experienced professionals to carry out this work or to pay the council double the cost it would take to pay a professional ourselves. When I question this I'm told that I have no idea what I'm talking about (even though I have a degree in Architecture) Yes! You literally can't make it up can you! 

Something needs to be done as today was the final straw as a large piece of plaster around 70cm x 50cm fell from the living room wall just missing the dog. I'm patching things up the best I can which is deemed improvements but I cannot make any alterations which is what work needs to be carried out. If I carry out this work, we would be in breach of the tenancy agreement and could potentially be evicted. I have also been told the Council will report me to the Architects registration Board meaning I could potentially lose my licence to work.  

I feel we are just hitting our heads against a wall. Without sounding dramatic here, we are living in a slum. Literally nothing we can do about it as we can't afford to Buy and we can't move out due to the issues of finding a house nearby. My Mother has sadly given up. 

Now we fall into a big issue where we are living in increasingly dangerous housing in regards to the building structure and the severe risk to our health. The Council states that if we damage the property we need to pay for these repairs. Yet we must pay the council for them to rectify this. Yet we are not damaging the property, it's the fact the property needs modernising as the house is on their program to do so  Surely this isn't right?    

Any help would be much appreciated. 


  • Ross_Scope
    Ross_Scope Posts: 7,507 Scope online community team

    Good morning @knew94


    Welcome to the community, I hope you are well today.


    I’m sorry to hear of the conditions you are living in, and that the authorities aren’t providing as much help as you think they should.


    Has your family ever had any contact with social services? A needs assessment through your local authority may result in you moving up the priority list, which would be of benefit to you it seems. 

    Shelter have lots of advice in relation to housing, so you might find it useful to contact them and likewise for Citizens Advice, have you had contact with either of them before about your situation?


    How are your three siblings coping? I hope they receive all the support they require to manage their autism. It’s great to hear that one of them is about to go off to university, how exciting.


    It appears as though this has had a negative impact on the mental health and well-being of your family, and your mum in particular. Do ensure that if you are ever struggling to manage, speaking with your GP about how you feel will help them understand how they can best support you.

    I have sent you an email from [email protected] with further information, it would be great if you could give it a read and get back to us.

    Online Community Coordinator

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  • newborn
    newborn Member Posts: 747 Pioneering
    As so often, a system is too inflexible, but nobody within it will alter it.  Therefore this would need lateral thinking.
    Two prongs would seem useful.  A) Find someone  powerful who can persuade someone at the head of the obdurate system to make a non- routine solution B) Find someone powerful who can present a watertight case.

    B) This is luckily bang up your street.  Think around who you know professionally, whose qualifications and reputation are too towering for any council employee to sneer at, and persuade them to lend their agreement to your  schedule describing  the necessary work.  That would make it impossible for anyone to say " only council employees are able to know what to do".     Then, get pricings from reputable builders who would carry out the work (ideally, ones who already are on your own or another council's approved  list,  or in some other way cannot be called cowboys about to wreck council property)    Then try hard to find examples of  comparable work already completed, and discover what it cost, both privately and to your own or some other council, to be able to offer evidence that what you propose is not only the right and necessary thing to do, but the price and the standard will be favourable in comparison with the council's own proposals.

    A) Will be the usual suspects, of M.P and councillors, but they will have a deluge of damp complaints to forward to the council.  You don't seem to have mentioned your mother's asthma to the council, but hundreds of other damp sufferers  will have added doctor's reports of asthma to theirs, so don't be left behind.  Others will have photos of black mould (carcinogenic) which they do not remove as you do, but photograph.   The falling plaster is your evidence, but you need to take care it is not unjustly used as a weapon against you, because the habit of long showers is ' harmful activities by tenant'. 

     (On that point, the first thing would be a more effective extractor fan.  You could easily find whatever is the world's most powerful bathroom ventilation! Actually, there might be mileage in using your professional status plus your siblings' exceptional needs, to get a manufacturer interested  in supplying it at reduced cost , in return for the commercial advantage of your story. You presumably measure the water vapour levels in the house? Photos, before and after moisture measurements, and your professionally written  favourable report would be a convincing sales advantage to them.  You could replace that at your own cost and the council could not reasonably hold it against you, even if you do it without getting consent first, provided of course you kept proof that a qualified electrician had done the work, and photos and other  proof that the making-good is carried out "in a workmanlike manner" to restore the appearance to as good as or better than before.)

    Presumably you are in touch with whatever disability groups and autistic organisations and (for mum) asthma organisations may lend support ?   Ideally get a medical opinion from the autistic consultant to explain in words of one syllable why the siblings need these long shower routines. Need, repeat need, as a medical requirement, not just 'enjoy long showers' (which is what the council employees will think to themselves, when telling one another "some tenants won't ventilate their property and insist on  spreading wet washing everywhere, then complain of damp- and it is all their own fault").   Bear in mind that the council's systems, and staff, are designed to deal with people who wreck housing, and people whose cousin's mate can fix plumbing, so when you, sensibly, propose your "experienced professionals", the person behind the desk does not differentiate, but sticks to the safe old script of telling you to ask permission and automatically refusing.   And the automatic refusal  is what  brings you to the other option,  which may be available to your mother on legal aid, of using the "....such permission may not reasonably be withheld", which would apply to any landlord, but doubly so in cases involving disability.
  • knew94
    knew94 Member Posts: 2 Listener
    Thank you to all have replied back to my post! I very much appreciate the time you have both taken to come back to me.

    With regards to the extractor fan. In the last year a very powerful extractor was fitted (by us not the council) replacing the existing one. I was hoping this would make a difference. Sadly not. This is due to the fact that that the bathroom is in the middle of the house with ducting that travels over a 2.5 metre span to an outside vent. To make matters worse the ducting is not perfectly straight, with many twists and turns to reach the outside vent. Fitted completely inadequately. I have also changed the extractor fan from automatic (which turns off after 10 minutes from turning the light off) to a manual switch allowing us to keep the fan on permanently or until we switch it off.     

    We have tried using dehumidifier but again this isn't touching the issue. Ideally we need the bathroom moved so it can have a window and a shorter distance from the external wall to the extractor fan to perform more efficiently in drawing this moisture out the bathroom.  

    Sadly all these measures have not helped, due to the distance from the fan to the outside vent that is needed to draw the moisture out. You would need most likely an industrial sized extractor fan. 

    That said the advise given is certainly a great starting point to move forward with and hopefully change can from this. 

    Thank you for all your invaluable advise!  

  • janer1967
    janer1967 Member Posts: 16,492 Disability Gamechanger
    Hi there 

    Just to add have you been in touch with your local mp about this 

    Unsuitable housing has been featured on the news quite a lot recently so it may be worth a letter or email to mp 

  • woodbine
    woodbine Member, Community Co-Production Group Posts: 7,769 Disability Gamechanger
    Definitely agree that the next step would be to involve your local M.P.
    Be extra nice to new members.


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