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Diagnosis: Severe Autism + Severe Deelopmental Delay (This includes severe mental impairement)


Last year we were awarded a 3 bedroom property with a Housing Association. This property is a house my severely autistic daughter lives in with myself and her younger sibling. They each require seperate bedrooms which the local council agreed to because of the complex nature of my daughters disabilties. They affect the whole family unit especially her sister. The layout of the house is 3 bedrooms upstairs and the bathroom is currently downstairs, situated next to the kitchen, which is just off the front room. The bathroom has a walk in shower (but isn't a wet room) and no bath. There are no bathroom facilities at all upstairs.
The houses in this area all have their bathrooms on the groundfloor and we live here because we need to be in the catchment area for the special needs school Lakshmi attends full-time as outlined in her SEN Statement. She will continue to attend the school until she is 19.
When being shown around the property we were advised that the shower could be taken out and a bath put in, but I knew I needed the walk in shower to accomodate her needs. I commented on there being nothing upstairs and I was told that I would get permission to have work done upstairs. Since moving in I've spoken to and had a home visit from their Occupational Therapist and have been advised that as we have already been provided with a shower, its location, to them, is irrelevant. Also that as she isnt physically disabled, as in she is perfectly able to walk, that work on the house for her would not be considered. They failed to realise, however, that it is not her whos needs have been met here, but those of the previous elderly tenant who lived at the property. We were told we would have permission still, just that we would need to cover the cost ourselves, which isn't viable on a Carer's income.

Basically I am a single parent and my daughter smears from her nappies and has done for the past 4 years (she is 5). I also couldnt hope to toilet train her in this house ... :o( ... We get full DLA for her now including the mobility element too ... what can I do to fight this!?!?!?

Any help would be greatly appreciated, thanks in advance!! ...
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Might sound a silly question?

do u have a toilet upstairs??

if not have you explained to them the difficulty of taking her to the toilet during the night and early morning when she is sleepy and trying to negotiate steps?? expplaining to them any sensory needs she has? physical needs? etc

do you have a social worker, Peadiatrician, Community Nurse or anyone similar that could speak to them from a 'professionals' point of view? shouldn't really matter but it does help to have a professional on your side sometimes.

Hope some of this helps

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There is a chairty called the act foundation that might be able to help you.
I'm struggling with my council to have a toliet put in downstairs.
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Sadly there is no legal right to have a toilet or bathroom upstairs and they can legally provide a commode as they feel this is perfectly fine although the reality is often not.
Whereas if it was the otherway way and there was no toilet/bathroom downstairs and the child couldnt get up the stairs there is a legal obligation to provide.

The Act foundation are a very good resource who operate quite hidden i feel and not many know of them and we do try and tell people about them and im glad wweangelica has mentioned them Smile

Worth trying these and see where you get.

Looking for sensory toys at affordable prices then look no further

Sensory toys for children with special needs CLICK HERE

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