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The Machine Without Adjustments

September 7, 2016

I woke up at 4am this morning with a thought. In the four years since I was told we were being made homeless, not one decision that has been made by Hillingdon has taken into account Steven’s  autism or disability. Not a single adjustment has been made to acknowledge his needs.

If I’m not careful I could get extremely trapped at the moment in trying to battle their latest non acknowledgement of his needs. They’ve turned down my request for housing benefit on both properties for three weeks whilst we get the house ready for Steven. Even though the guidance states specifically that it can be done for a disabled person whilst “decorating and carpeting” takes place. Exactly what we’ll be doing. I’ve had a direct refusal to allow us to install a bath – the year long probationary tenancy doesn’t permit it. Same with the request to put up a fence in the garden – the current knee high one is deemed “sufficient”. Both those decisions ignore the serious safeguarding situation that could happen. I’m prepared to pay for and install the bath and fence myself. But, no. I don’t want to get bogged down with those matters though – there’s a house to be painted lime green and a million and one other practical jobs to do in three weeks. I’m handing the three issues over to Steven’s advocate to tackle.

But it’s a terrible indictment of our social care that no recognition is made of Steven’s disability. I have a wry grin when I see social care friends on social media talking about their role being that of an “advocate”. Steven’s social worker has worked hard but I see her as a gopher between Steven and Housing. And she is the one who is left to pass on the negative responses to calls to address Steven’s needs.

As a middle aged man, it’s easy to look back on the past through tinted spectacles. My sister has been in her flat now for 25 years and is shocked by how little the council are willing to do to meet Steven’s needs. But our family history suggests that things weren’t so rosy in the past.

We were brought up in a council flat in Southall. It was the sixties and my parents worked hard at making the place a good family home. It was a time of moving away from outside toilets and iron baths on the living room floor and we had a tiny bathroom and toilet installed in the space at the top of the back stairs. When me and my sister grew too old and big to share a box room, the front room was converted into another bedroom. It was a great place to grow up but a bit pokey. My Mum tried for years to arrange a move to a bigger property but it never happened. Even when she became ill and could only use a wheelchair, we still couldn’t get a move from our first floor flat. I still have some awful images in my head of her being carried down the stairs so she could get out. She died in February 1976 when I was 16 and my sister was 10. A couple of months after her death, her dream came true and we were moved to a newly built estate at the other end of Southall. It was huge and she would have loved it.

So perhaps there isn’t too much different in the 40 years that have passed since we moved to the new estate. The only difference is that back then in the 1970s, social housing was still being built. It was a large, sprawling estate and must have had over 300 houses and flats there.

The only salvation at the moment is the knowledge that in three weeks time, this will all be over. Although, Steven is a probationer, so may have to go through it all over again in a years time.

But in September 2017, he’ll still be autistic. He’ll still have learning disabilities. He’ll still need a bath and a high fence as a safeguarding issue.

And all the interior walls will be a tasteful shade of soft lime green.

From → Social Care

  1. liz@jesslinworld permalink

    Surely they must be obliged to take account of Steven’s needs. And isn’t the whole point of social housing nowadays to help people who can’t buy a house or take up a private tenancy? On the bath issue – I have stayed in a couple of places abroad where the bath was in a wet room and the water just came out the hole in the bottom of the bath and ran down to where the water drained for the wet room. Don’t know if that gem of knowledge helps! It worries me a bit about this probationary year thing. What is it for? Why might they not renew the tenancy? Awful that Hillingdon are giving you so many worries.

  2. what arseholes, no joy I think on the fence/bath until the tenancy is converted to secure but discretionary payments whilst Steven orchestrates the move with support are entirely possible. Good luck to Steven’s advocate.

    • 6′ x6′ square trellis erected inside the fence is deemed plant support and would add a substantial layer of protection for safeguarding. No objection can be raised re the introductory tenancy , Steven is entitled to enjoy his home and garden.

  3. From the Wild Wood permalink

    I’m amazed that you are not getting more help with making Steven’s new property entirely suitable and safe for his needs. I’m not sure if Disabled Facilities Grants are still available, but certainly when we moved into our privately rented cottage – around 11 years ago – the Social Services arranged for emergency security work to be completed throughout our new home before we moved in: this comprised things like window and door locks, tamper proof lighting and other electrical safeguards. Admittedly “Shelter” gave them a little ‘encouragement’.

    Unfortunately, this work was not completed to an entirely satisfactory standard, but it enabled us to survive until we had time to improve on the work in due course.

    My autistic son, a similar age to Steven, would also be pretty put out if he did not have a bath – in fact, this is totally essential. Could this not be classified as an enhancement to the property (as would a decent fence)?

    I so hope that you are able to get the help and support you and Steven need from your local Social Services/Council, and that Steven is blissfully happy in his new, lime green, home.

  4. weary mother permalink

    Just fit a bath ?. Steven is the customer here..

    • Steven’s tenancy is probationary/introductory for the first year and he doesn’t have the same security of tenure/rights as a secure tenant. He does have the human right to enjoy his home and garden which should equate to his need of a bath being agreed to but permission has to be granted. It is all pretty sickening given people struggle like crazy to get appropriate housing in the first place.

  5. simone aspis permalink

    that sounds odd that housing does not allow you to choose between a bath and a shower

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