I know I am an unreasonable, whinging old cow, but...

[ManxMum]

Please let me know your views.
case senario - 2 families, each with a special needs child.
Family one's child is in a wheelchair and, I suppose, has a mental age of approx 6 months. The child is quite small for age.
Family two's child IS NOT in a wheelchair, has a mental age of approx 18 months, but with the added problems of autism and is large for it's age.

Child one gets a ground floor extension, containing a bedroom and bathroom, complete with all necessary equipment built and financed by social services.

Child two gets nothing.

If child two couldn't walk, would they get the extra help? and who says that child two needs are so much less than child one?

All comments welcome.

What help/support does child 2 need? Would a ground floor extension be helpful/appropriate in this case (can't quite see why it would be but am happy to be corrected)?

Not sure I understand

Not sure how it works in practice but the needs & support offered are based on & assessed individually so its impossible to compare two children especially with very different abilities.
Also children with very severe physical disability should get support with a view to their long term needs, so a downstairs room may not be essential now but will be as they grow.

I can only assume there may be things that the 2nd child would & should be entitled to receive that would not be appropriate or required for the 1st child.

In reality of course it could be that they ran out of budget or the 2nd child just didn't tick the right boxes.

Child two is very mobile, destructive (not violent) and extremely hard work.

Child one is not.

Child two is uncooperative, as is child one.

I was just wondering why the difference in personal mobility means such a lot in help that families get for their SN children.

I think that child two is much harder, both physically and mentally to care for than child one.

Child one's parents fought hard for what they got and deserve it.

Child two's parents get nothing but DLA.

How far would Child two's parents have to go to get what their child needs? The Mother is under a lot of strain caring for her child and is depressed. Child two's parent is considering long term care for her child, whilst child one's parents are being helped with everything needed to keep the child at home.

Thats it, exactly, their disabilities are different, not less or more but different.
So maybe the 2nd child would qualify for help in taking him out, or safety additions to the home to make it safer, things that just are not needed for the 1st child.

I know in real life it doesn't always happen as it should & the "experts" & budget holders sometimes fail to see the disability unless it smacks them in the face IYKWIM.

Is one of the children your dc

MMM, yep child two is mine.

Who else do you have on your side, do you have a SW from the child disability team?

Have you & your dc had any carers assessment or asked for respite?
Sorry if these are stupid questions, just trying to think of things that may help.

We xposted btw on my last post so didn't see your 2130 post.

You have to fight. For everything. You need to know exactly what you want and why your child needs it. You have to put your case clearly and in such detail and backed up so well that you back them into a corner and they have no option but to do what you need. Of course, they hate you but you won't care about that!

(I don't mean fight as in shout etc, btw - be calm and polite and totally unmoved by their tales of budgets and other childrens needs....)

It can also be a factor that physical adaptations are viewed as straightforward 1-off costs. Funders tend to like these.

So wheelchair use= ground floor extension, ramp, widened doorways, hoist = sorted. Much easier than sorting out a flexible care package with long term budget implications - even if both parents in your example would benefit from this as well.

Years ago someone in our Soc Svs dept wanted to do a report on adaptations to the home for children with LD/ASD etc. I gave him a LONG list of things we'd had done and paid for ourselves that I think should come under the same umbrella as adaptations for physical disability, why not? He never got to do the report, surprise surprise.....
If I can remember, it included:

• toughened glass in top floor windows (2 having been broken at different times by DS)
• security grilles on windows above ground floor
• MDF "shutter" on DS's bedroom window
• Remounting radiator in DS's bedroom so it wouldn't get pulled off the wall again
• blocking up fireplace in DS's bedroom as he used to put his arms up there and pull down all the soot and filth
• star locks on all internal doors
• extra locks on outside doors
• moved the light switch in DS's bedroom outside to landing to deter repetitive behaviour
• new light fitting close to ceiling in DS's bedroom as he pulled down the one that was hanging

I am sure there are more but I can't remember everything. All these adaptations were done at our cost due to his disability, nothing else. I wanted a grant to change the upstairs bathroom into a wetroom but NO CHANCE without physical disability, although the need is again due to his disability.

Wow Davros we have done all of these things, accept move the radiator which DS1 has partly pulled off the wall last night. Have to admit I didn't forsee that one.

As well as all of the above we have also plastered his bedroom as he peeled all the wallpaper off the walls, screwed bed to floor walldrobes to wall, etc.

Also had all plug sockets changed to flush fitting after he smashed the ones in his bedroom and almost electrocuted himself.

Finally had a fence the size of the berlin wall fitted all around backgarden, although admittedly family fund did cover some of the costs of this.

I would add up all the additional expense so far, but I am afraid I would fall off my chair.

Actually that isn't strictly true, we haven't got security grills on the window (yet?).

And we had hardboard covering all the inside of the windows until we could afford to install double glazing (house looked like a squat/crack house from the outside), we are unsure whether we will still have to have an inside shutter made for his room (the double glazing has withstood the constant banging of toys/his head so far.

I forgot about the 4 beds that he has jumped through AND he broke our old bed so we replaced with fantastic tempur-electric-up&down system-poshheadboard etcetc. He broke it a few weeks ago, waiting for engineer to come...... should have stuck to mattress on floor!

lol, I always wonder how DS manages to break the slats on his bed so often when he never sleeps in it.

We had our first SS assessment this week and they told me they wanted to check the bedrooms and it was normal practice. I said they would have to excuse the mess, to which they replied as long as there was clean sheets and bedding on the bed it would be fine.

I couldn't help laughing out loud as I told them there would definately be those things in his room somewhere, but on the bed I doubt as they are always stripped off within 5 seconds of him realising they are on there.

Haven't heard back from the assessment yet, but not holding my breath, DH caught them lying about a local placement 5 times, due to information Yurt had given us a few days before, unbelivable!

I know of at least three separate families who have a physically impaired child whose homes have been adapted (at 5-figure expense to SS) to ensure that the children can remain at home and avoid being cared for by the State (at 6-figure expense). The accounting is that simple.

For mobile disabled children it is a completely different story. There appears to be no budget for adapting gardens (to have higher fences) and no budget for any other type of adapatation either, internal or external. All SS hand out are......strategies! A nice, cheap, easy 'solution'.

I agree, mobile disabled children are harder, in some ways, to manage than their physically impaired counterparts simply because you never know what they are going to do next, where they might disappear to next and what they might break next.

It is unfair. But I know none of us bedgrudge those who do get funding due to physical disability. It isn't the case that they shouldn't get it, but that others should too.... to much £££ of course. Imo there is a long history of "disability" usually being physical in the past, hence some stupid disabled transport policies and many others.

I currently have my social worker working on getting a disabled bay outside my house. I apparently do not need one because dd can walk luckily in this instance social services agree with me (shocking I know) and are acting on my behalf against highway services to get me one sorted (hopefully it will be successful)

but yes it is unfair but no-one begrudges people with physical disabilities getting adaptations either

Riven, I think your aunt's attitude is terrible, as you describe it. I hope your other family members are more understanding.

It is difficult to compare the demands of caring for a physically impaired child with those of their more mobile counterparts. However, I do think that - generally (your aunt excepting) - it is human nature to have more 'automatic' sympathy for a disability that is immediately visible (and therefore more understandable) and this is perhaps one reason why funds are scarce for mobile SN children, many of whom look totally 'normal' both physically and facially.

Unfortunately for children (and adults) with hidden difficulties, we are such a visually oriented species that this way of thinking is second nature.

Manx some of it might be the particular funding available. For example a disabled facilities grant- it's easier to see how to apply that to physical disabilities. I applied for one for ds1 (similar to your child 2) to make our house safe and the adaptations proposed were not (imo) fit for purpose, so I've complained.

Thanks for so many interesting replies.

We have also done and paid for adaptions that we have needed so far, moving light switches, blocking in radiators, cabin hooks on all doors, strong bolts on front door, six foot fence round garden (mainly to keep next door's dog's out!), high shelves in every room, TV anchored to wall (I can just reach the on/off button!).

When purchasing appliances, the first question is "Does it have a child lock?"

His bed has just been replaced (£300) with a new frame and a foam mattress (non-bouncable)

Trampoline's in bedroom, living room and garden.

Just off to remove light bulbs from landing light!