In a property which isn't meeting our needs — Scope | Disability forum
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In a property which isn't meeting our needs

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Nas16
Nas16 Community member Posts: 1 Listener
I will try keep this as short a possible. 

i Live in Brent, London 
I have a three bedroom council house. I have three children 2 boys and a girl. 
my eldest boy who is 19 years old is severely disabled (drug resistant epilepsy, hydrocephalus- shunt in situ, severe learning difficulties, eating issues on ensure milk, severe speech delay and ADHD and mobility issues so unable to walk. his condition has deteriorated in the last few years. He is also 6f 6 inches tall). 
my daughter is also on the ASD spectrum. 

When the council offered the house in 2018 I had my reservations as they sectioned off the through lounge and made a bedroom for him downstairs with a wet room but it all is small - it’s 2.5m x2.5m 

Although I expressed my concerns I took the house as my previous property had his bedroom upstairs and was not wheelchair accessible. he had fallen a few times due to seizures. at the time my son was only 5f 5 inches, now he’s 6f 6inches. 

they advise they will not do an extension to provide more room for my son or a larger wet room - they will only work with the current footprint of the house. They want to make the living room even smaller to make his bedroom a little bigger. 

He cannot share a room with his younger 12 year old brother due to his epilepsy and medical problems. 

I do not want to move as this will be really difficult for me and will cause him and us all a lot of stress. It may also cause his complex seizures to get worse.

the wheelchair is wide and does fit through the doors but tend to bump into the walls and furniture.

the OT did advise the council an extension would be the right option but the council are not willing to do it and advised we go on the housing list to rehouse - it took me 7 years under band A medical to get this property! god knows how long it will take to get a 4 bedroom wheelchair adapted property now! They rather we wait years rather than help and we suffer in the process. 

he has medical supplies and nappies which are sent every six months - so it’s bulky - I currently put this in the garage but it’s not weather proof and a lot of the stuff things get damp. 

I have a support network with my siblings who live 10 minutes from me and my elderly mother too. The support network is crucial especially when I have to go A& E due to my son’s seizures/illnesses. 

the ramp to the house is too steep as I struggle to go up and down due to his weight. When the surveyor came around A he said it’s like a ski slope - made a joke about it - but. I didn’t find it funny as I have been struggling for years with it. I am only 5f 3 inches. 

ive Been through the councils complaints procedure and they have said they won’t pay for an extension. They said it may cost £100,000 approx for a single story extension. 
which I think is far too excessive and they won’t pay for it point blank.
I’m willing to contribute towards some of it as moving homes will cost a lot too. 

is there anything I can do? I am desperate as it’s really stressing me out. We are in property which isn’t meeting my son’s needs.

Comments

  • Kimmy87
    Kimmy87 Community member Posts: 321 Pioneering
    edited March 20
    Options
    Have you tried contacting your local MP or area councillor?

    I'm assuming someone has mentioned Disabled Facilities Grant to you

    https://www.gov.uk/disabled-facilities-grants 

    Small suggestions:

    Look into weather proofing the garage, or getting storage to go in there - plastic garden storage containers (which would each hold a lot of supplies) come to mind.

    Shelving on the walls expands storage capacity, and/or free standing open plastic shelves (they have very small footprints) in conjunction with lidded plastic crates gives yet more places for smaller items. 


    Would they be amenable to re doing the ramp so it's less steep?

    Appreciate those suggestions won't solve all your problems, but might make things easier. 

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