EDCM Campaign against cuts to benefits paid to parents of disabled children

[KateMumsnet]

Hello

Today Every Disabled Child Matters, with whom we worked on our Respite Care Campaign, is calling on the government to rethink its decision to cut support for up to 170,000 families who have disabled children.

The Welfare Reform Bill proposes to cut benefits paid to low income or out of work families with disabled children by 50%. This amounts to a drop of £1400 per year - although these families often face higher basic costs than others, and may also find it harder to get employment which allows them to continue caring for their children.

If you'd like to write to the PM and ask him to reconsider, EDCM have made it easy to do so via this link. And don't forget to let us know what you think here on the thread.

Thanks

MNHQ

I don't think Francis Maude is going to be helpful somehow.
Despite standing on my garden path before the election promising the Tories would protect me and my family because of David Cameron's family situation.

Glitter oh, my sides! Tories! Protect disabled children! Ha!

watching the House of Lords debate and the slimy Lord Freud who does not know how many Carers will be affected and has no numbers at his fingertips.

More scarily, my own MP (Paul Flynn) is labour and patently Not Bothered- just acts as a forwarded if you ask him anything, sends it on to Minsters. As if I can't do that! I want to know what he thinks.

The really scary thing is that due to right wing press public perception of benefit fraud is that it costs this country 19 TIMES what it actually costs. Now £1billion is a lot of money to lose via fraud, but it's not the £19 billion the negative press has made many people believe it is.

I agree that benefit fraud has to be combatted, but this cut won't do anything to solve that. All it will do is make my family and families like mine struggle.

I have done a thread is site stuff asking this to be made a sticky thread

Exactly Glitter. It punishes the innocent for teh sins of the wicked.

I thought we were supposed to have a better justice system than that?

Do you know what? I really do have quite enough to worry about what with trying to get my children into/keep them in special schools, get my daughter's cardiac care dealt with, appealing DLA decisions and everything else let alone panicking about how I'm going to heat my house and feed my kids....

That film had me in tears. I didn't know that that happened to people only 30 years ago. (I was born in 1981). Is that where we are headed?

Does anyone brave want to pm me some figures on incomings and expenditure so I can do a work-up for UC with the drop fromthe TC's for a dc on MRC to go on the blog? I will not name any names - but as neither me NOR either of my dc with disabilities get ANY disability benefits, I'm finding it a bit hard to do the maths!

I apologise for the delays with the blog post about the financial difference between TC's and UC - I had a baaaaad day yesterday, and didn't feel up to doing the maths. (Was pre-menstrual and a bit stabby, first one in over 18 months...). I will try to work on it properly later tonight, but I figured it would be very helpful to do a calculation to add to the post on the blog about the financial losses for someone IN that situation where there is more than one dc with disabilities in the household.

So the changes will affect those with MRC/M and not those with HRC/M?

That may explain why ive heard of many families recently being awarded MRC when by the DLA rates guidelines technically they should be awarded HRC due to their children having night time care needs.

My son is included in the above, he does have night time care needs but he got MRC which of course I was so grateful to get that I certainly didnt contemplate challenging the decision.

Bastards.

That film had me in tears

Me too.

Amberleaf by the DWP criteria my son should get HRC too. He doesn't. I don't dare appeal as I don't want to lose the MRC we already have.

Hunty the figures are too complex - tax credits go on too many different things but this gives a good idea on premiums

So that tax credits will vary on whether the parent works or is a carer iygwim

Yes, ds3 should get HRC too but when we appealed they awarded him LRM which was a bonus and a lifetime award so we left it.

DS1 gets HRC but somehow I don't think he will when renewed in December: care needs just as much (more so if you think he's a 12 year old unable to go out and in frequent need of restraint now) but well, we all know how it is.

As far as I know and please correct me if I am wrong it's only the care element. I don't think the mobility is coming into it for some reason and it doesn't always follow that somone on HRM would get HRC.

I could do a few calcs, Glitter - Might take me a while, but it'll give me something to do tonight to take my mind off feeling stabby. .

I will have to post them on Keep and Share with a link though. I've got to go and collect the DS's in a bit, but will be back armed with a pad of paper and a calculator later!

Out of curiosity, when DLA changes to PIP - are those on MRC going to GET PIP or not? I am asking for my 20yo Dbro, who has Aspergers.

He had HRC, HRM until he was 18yo, then they dropped it to MRC with no mobility component. Even though he has EDS on top of the autism. He is due for renewal in February.

I'm the only person in 4 generations that has not got many spectrummy traits or a full diagnosis.

My Maternal Grandfather - Very Aspie traits + dxd OCD. My mum - adult dxd HFA. My Uncle - adult dxd Aspergers. My Dbro - dxd Aspergers at 7yo. My DD - dxd HFA at 4yo. My DS1 - very Aspie traits - no dx as I haven't pushed it! My DS2 - dxd ASD at 3yo.

I am meant to deal with EVERYONE.

But if Dbro loses his DLA - he literally won't EAT as he can't hold down a job. Or tie his shoelaces or button a proper shirt.

Hunty- the EDs may change things but certainly tehre is a growing body of evidence that people with ASD are being excluded generally from PIP, not only those with AS or even HFA.

But the key to PIP seems to be to appeal, and get proper advocacy for your appeal.

Oh SHITE.

If that happens - I might just take to hiding under my dining table, and not coming out until this Government have lost an election.

That video was shocking. I was born in the 80's and recall children with disabilities and behavioural issues in my mainstream school, where thankfully they were accepted by their peers and thrived.

If things did go back to that? Over my dead body would my DS be subject to that level of care. And then after my boy I would hope they would also have to step over the bodies of his dad, his nana, etc.

My nana's brother is autitstic with pica. When he got to much as a young adult for my frail great nana to deal with he went into residential care. He now lives about 30 miles away from his home town and gets in trouble for raiding street bins for food (he gets fed his meals where he lives but like others have mentioned he seeks out things to eat almost constantly). As a child he was cared for at home but he was a source of family shame and resentment.

I thank my stars every day that my DS isn't growing up with the same experience as my nana's brother has lived through, however he is still viewed by society as a burden, a taboo, a drain on resources. The lack of numbers on threads like this compared to others on MN are very telling. People don't like to think about it, because if they do they realise it could be them. A scary thought they don't want to let in.

DS's DLA runs out soon, I am waiting for my renewal decision. I am not holding my breath. Even if he does get any, for how long? How long until that is done away with too? How long until school funding is cut and he loses his teaching assistant? How long until I am pushed onto a workfare programme with no safe care option for DS while I am out?

It's worth watching the whole of The Silent Minority. It helped me to understand why my MIL taught DP back in the 70s to hide his disabilities, which I used to disapprove of. But as the child of a poor single mother, he could have ended up there. It's spun to make their point but it's all true - it all happened. Decent, well-meaning, hardworking people really did tie children to posts and leave them rocking, tens of them, in rooms, in cages. Because they had no alternative.

Take away DLA, social care, respite, all these hard won alternative, and that's where we'll end up. We will have no alternative.

Hello there

We've had a quick chat with EDCM about KateMiddlet0n's points on the email process - it seems that once you've got to the 'email a friend' page your email has already been sent to the PM. But they do agree that it's a bit confusing, and they're going to look into restructuring the page.

As for having to click the confirmation email to finalise the action, they agree that this is irksome and might be lowering the completion rate - but unfortunately it's an anti-spam measure generated by the Number 10 site and therefore beyond their control.

Hope this helps (at least a bit!).

MNHQ x

Thanks MNHQ - I didn't get an email from Number 10 first time round, just from EDCM which is why I thought there was a problem.

Absolutely agree there should be a verification process for signing the petition. The frothers got spammed the other day but someone who registered for an anti-BBC petition using the frothers email address and the delightful name "paranoid tin foil hat wearing twat". Proud day when you've pissed some knobber off that much to go to the bother!