Watch BBC1 now ~~~ WHEN A MOTHER'S LOVE IS NOT ENOUGH

[RTKangaMummy]

NOW

[theheadgirl]

The passport issue is a big one - every benefit I have received from the state, I have heard about through other parents. No one sits down with you when your child is diagnosed and says "this is what he/she is entitled to"
We have just qualified for 8 hours per week direct payments, to pay someone to give us respite. I have to find this person myself (which I've done through an advert at DD3's playscheme) then social services have to do CRB checks and set up finance etc. Its been 4 weeks since I found our prospective helper and SS have done nothing. I can see me losing this person through the inertia of the office workers.....

[candyfluff]

big love and respect to all the carers of disabled children.

[candyfluff]

am watching this now on iplayer - i cried in the first one and a half minute

[MorrisZapp]

Sorry - I meant of course that I couldn't imagine it.

I'm aware that this is reality for lots of people.

[donkeyderby]

I think one of the problems is that the wider public have no idea of what goes on behind closed doors in our homes. Most disabled children tend to be bussed out of their communities to special schools and are therefore hidden away. Because they are not causing anyone else any grief, they can be ignored.

I heard a statistic that young offenders get three times the amount of resources thrown at them than disabled children.

[meltedmarsbars]

hear hear Riven

[meltedmarsbars]

Money.

It all costs too much money.

[MorrisZapp]

I watched this programme in stunned silence. You can't even imagine what daily life must be like for these kids and their parents.

Here's the question though - if other countries have passport systems etc as outlined by DC, what is the actual reason for the UK not having this?

It just strikes me that every time an election rolls around both sides go on about how they're going to cut red tape and slim the civil service etc, passing on savings to public services in need. Yet this doesn't happen.

Gordon Brown also has a disabled child, and seems like a decent human being. Why is it so hard to make these desperately needed changes become reality?

Does anybody have practical answers to this. Although our politicians may seem bombastic, self interested and full of shite at times, I bet all of them to a man would like to see more help given to families like those in the programme.

So what's the stumbling block?

[MollieO]

Assuming the Conservatives win the next election I wonder if they will introduce the passport system that David Cameron spoke about in the programme. That surely has to be the way forward. I can't imagine coping with a severely disabled child let alone having to also deal with all the ridiculous levels of bureaucracy.

[meltedmarsbars]

Part of the answer is to make disability hate a crime.
Partly to provide more help at home and for respite.
And more help for siblings.
And make the applicatioons easier.
And...
And...

It goes on.

[sweetkitty]

When he was hugging his brother and helping his Mum out as well and when those cretins were shouting abuse at him as well, I so felt for him.

What is the answer, more respite carers???

[meltedmarsbars]

But our other children should not feel like primary carers! They are only kids!

[sweetkitty]

But remember ladies the thread about you only having SN children for the money!

I watched it in tears last night, I know the nappy thing is true, have seen it first hand through a friends brother. It's utterly disgusting. I know the battles parents of SN children have to go through to get the most basic of equipment.

I thought the programme was very good and raised awareness of the issues, the wee boy who was caring for his big brother was lovely.

[meltedmarsbars]

Here is the link redirectingat.com/?id=470X756&url=http%3A%2F%2Fwww.bbc.co.uk%2Fiplayer%2Fepisode%2Fb00ntmbf%2FWhen_a MothersLoveisNot_Enough%2F

[meltedmarsbars]

Hi, I am a mother of a severely disabled child. Unfortunately, yes this is all true. Yes, we have to justify why our incontinent children need more than 3 nappies per day. And we can't go out and but 12 years-olds nappies from Tesco, can we!!??

Yes, we have to fill in endless forms to apply for allowances, only to have them rejected (my child cannot walk, talk, is tube fed and incontinent with a life limiting condition but was still rejected for the higher rate of disability benefits)

Nothing, and I mean nothing is offered from Social Services in the way of respite. Friends with disabled children are our best source of information, they tell us what to ask for, what should be available.

The mother who said that the only reason she and her disabled child were still alive was bacause of ther other children spoke a truth that many others secretly aknowledge.

I hope this program opens peoples eyes.

[jjones]

Just came over from the special needs board and yes that is really what life is like. It was not exagerated in any way. The red tape we go through is stupid.

[RTKangaMummy]

blimey ~ the red tape is sooooooooooooo stupid



My BF has a son with DS who is at college BUT the education people are so stupid cos they restrict the number of years he can have education for because he is not as disabled as some but he is worst than others

Why cant they just see them all as children and as INDIVIDUALS !!!!!!

I mean how stupid is it to restrict the nappies she is allowed to use

[nevergoogledragonbutter]

I'm watching.

[RTKangaMummy]

[Lonicera]

This is so sad

[RTKangaMummy]

sure it will be on iplayer