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Stop the Abolition of DLA

(875 Posts)

The government are proposing to get rid of DLA in favour of PIP. full consultation here

Riven started a fantastic thread in Chat with the very pertinent point that this applies to everyone, that every one of us could be just one step from disability themselves.

There is NOTHING in the media about this. These proposals could mean poverty for the disabled and their families in this country. It could leave some in residential care completely isolated from their families and support networks through the removal of the mobility component.

My family has already been hit three times through the NHS, education and aiming high, via the cuts, if they now remove the money from our pockets we are going to be in a heat or eat situation.

Please MNHQ do something, as many are oblivious to these proposals and what they will mean, including those who themselves already claim DLA.

sleepysox Sun 16-Jan-11 16:34:00

I'll back you! I've posted a message to you on my thread.

Maelstrom Sun 16-Jan-11 16:35:47

Marking my place

bigcar Sun 16-Jan-11 16:37:36

missed the other thread but I'm in smile

sarah293 Sun 16-Jan-11 16:38:58

Message withdrawn

ThatVikRinA22 Sun 16-Jan-11 16:40:47

fucking hell - they want rid of DLA now? ill back you aswell. marking this thread for later when i can get back to see what i need to do

sarah293 Sun 16-Jan-11 16:43:00

Message withdrawn

sarah293 Sun 16-Jan-11 16:43:47

Message withdrawn

noddyholder Sun 16-Jan-11 16:44:02

This govt seem prepared to stop at nothing If they keep going like this the student riots and flying fire extinguishers will be the least of their worries.I really feel people are going to take to the streets

ilovesprouts Sun 16-Jan-11 16:45:37

im in ive post on the other thread too !!

Sorry I didn't realise you weren't supposed to post here unless it was an agreed campaign blush, but please don't delete MNHQ.

We need a voice and the media are not giving us that.

cornslik Sun 16-Jan-11 19:15:44

bump
11 posts in six hours sad

ANTagony Sun 16-Jan-11 19:19:51

I'm in. I wish they'd stop confusing DLA and incapacity benefit. Because we all know that you just phone up and they dole out DLA its that easy! (excluding the pile of reports too thick to fit in the post box, 5 additional independent reports they requested from various specialists and rather complex form)

jooseyfruit Sun 16-Jan-11 19:23:24

what can we do? does anyone know of any protests being organised? this makes me so so angry.

GooseFatRoasties Sun 16-Jan-11 19:25:05

I support this too.

count me in

Oh LOrd! jUst read the bit about them taking in to account aids and adaptations. angry

sarah293 Sun 16-Jan-11 19:48:26

Message withdrawn

shock

bullet234 Sun 16-Jan-11 20:06:57

Count me in as well.

cleanandclothed Sun 16-Jan-11 20:09:04

Bump

daisy5678 Sun 16-Jan-11 20:10:36

I'm (obviously) backing this.

The consultation gives a few reasons for getting rid of adult DLA and for considering changing children's:

1) we will change it to PIP instead of DLA because some people believe you can't work on DLA (wonder why that is - maybe because politicians keep linking DLA with worklessness), which kinda implies they want more people to realise that they can claim it (ha) which contradicts...

2) we want to save 20%

3) we think the current system's crap.

I agree with number 3, but surely the way to solve that isn't to chuck it all away and spend huge sums of money that we apparently don't have on re-branding and assessing it.

I think number 1 is cynical and number 2 frankly disgusting when the pensioners are still awash with heating payments that many of them don't need, especially if they're in Spain or loaded. So it's OK for pensioners to carry on as they were but not disabled people? Makes me angry.

The idea that you judge a civilised society on how it looks after its most vulnerable is, I hope, giving the Coalition sleepless nights over shite like this. However, the scariest thing is that I suspect most of them won't give it a second thought.

daisy5678 Sun 16-Jan-11 20:13:21
MissQue Sun 16-Jan-11 20:16:26

Don't forget the removal of mobility allowance for people in residential care. Because if you're in a care home you don't need independence, you don't need to get out and about, to work or socialise or deal with your own everyday business or get to hospital and doctor's appointments, or....

madhairday Sun 16-Jan-11 20:27:42

Adding my total support here.
Just to add that the new system will be even more against those with fluctuating and invisible conditions. Again the most vulnerable being penalised.

MissQue Sun 16-Jan-11 20:41:23

Absolutely madhair, people with mental illness, autism, epilepsy, all kinds of debilitating and life affecting conditions will suddenly find themselves without essential assistance. It's the most evil cut of all. At least students can work to pay their student loans, middle class parents can do without £20 a week etc.

poppyknot Sun 16-Jan-11 20:59:14

The lack of help from elsewhere and the need for a campaign is pointed out here

kittycat37 Sun 16-Jan-11 21:07:57

I'm really glad you started this thread,

I think the cuts for disabled people are totally horrifying and disgusting.

What on earth do they think they're doing?

It's totally inhumane to take mobility allowance away from those in care homes and really cynical too as those people are the least able to protest about it.

I'm deeply worried about what's going to happen to social care. My Dad has 5 visits a day at the moment as he's severely disabled. The uncertainty about whether these will continue is absolutely horrendous. It's causing him unhappiness and stress which are the worst catalysts for his illness.

I despise Cameron for this. He promised that as the father of a disabled son he would protect the vulnerable.

Fucking liar. My blood is boiling about the whole thing.

glovesoflove Sun 16-Jan-11 21:43:06

What can I do about it? I'll write to my MP but is there a petition or an organised campaign by a disability charity that I can give a tenner to? I think it's absolutely foul but I can't say I'm surprised - they're Tories.

Can people post any marches they hear of here please? Most disabled people can't march but I'll be there with bloody bells on.

snowmash Sun 16-Jan-11 22:16:14

I'm in

Me too.

kate1956 Mon 17-Jan-11 00:23:33

there is a national day of action on 24th january
to see where stuff is happening look on the 'info' and scroll down for cities

www.facebook.com/event.php?eid=173084439389460

There are also demonstrations in London and Manchester on Saturday 29th janusry to defend education and the public sector backed by students and unions

educationactivistnetwork.files.wordpress.com/2011/ 01/unite-for-education-29-jan1.pdf

Hope this helps
kate

stLucia Mon 17-Jan-11 00:28:59

I'm in

superdragonmama Mon 17-Jan-11 00:35:15

Me too.

Am disgusted by the range of cuts being made by the tories - so many of them seem to be targetting the most vulnerable people in society: disabled people, children (CEOP to be cut), legal aid cuts, cuts to services mostly used by the poorest like libraries, etc., let alone NHS 'reforms' and cuts.

ziggyf Mon 17-Jan-11 09:57:43

I'm in too, I'm happy to march/protest too.

Off to look at the resources Riven posted about.

NessaRose Mon 17-Jan-11 10:20:52

I am in. So much for protecting the vulnerable people angry

potoroo Mon 17-Jan-11 10:28:09

I'm not in the country for the protest, but I will be writing to my MP - thanks for the links. Will watch this thread too.

RowanMumsnet (MNHQ) Mon 17-Jan-11 10:44:05

Thanks for pointing this issue. We'll put some feelers out to the organisations we tend to work with on SN/disability issues and have a think.

While we've got your attention, can we ask that you post any updates about responses from PCTs on the nappies issue to this thread? If PCTs aren't following through on best practice advice it would be great to have enough ammunition to do something about it. (And of course, if some PCTs are following through, it would also be great to give them a namecheck!)

Thanks,

MNHQ x

RowanMumsnet (MNHQ) Mon 17-Jan-11 10:44:49

Pointing OUT this issue, I meant. [Monday emoticon]

findingthepath Mon 17-Jan-11 10:53:07

Fuck fuck fuck angry

My DH is disabled we have the car and the DLA currently its paying our mortage.

Without this money we will be homeless sad I have deprssion and DH works but is deteriating. We have a 2 year old and are currently living on 13k pa.

The toris have taken away child benefit [ok frozen it], now tthey want to take the DLA allowen.

How do they expect families to live? we already sleep in one bed in one room as we can't afford to move angry

So i'm in who do i kill grin

I'm willing to sign and march if you let me know when and where.

madhairday Mon 17-Jan-11 11:40:52

I'm willing to do any work needs doing - working party, writing letters, etc etc. May not have physical strength but I have Mind Power and will not be moved grin

cornslik Mon 17-Jan-11 11:46:42

woohoo look at the thread now! Well done for starting this glitterknickaz smile

Thanks for taking this on, RowanMN. smile
This issue desperately needs highlighting.

Cornslik, it's not mine really... I was just bringing Riven's thread to MNHQ's attention.... yes it's something I'd been working on independently but I never dreamed we'd get backing here, and I'm glad we have.

GooseFatRoasties Mon 17-Jan-11 12:33:50

WAVING AT MNHQ
you were looking for opinions from disability organisations. Here is what mind has to say:

"Mind is opposed to the 20% cut and seriously concerned about some of the proposed changes announced in this document."

check out their page on welfare reform

Also would like to thank you for taking this on board.

madmouse Mon 17-Jan-11 12:58:39

Just hopping over from Riven's thread to say I'm in.

sarah293 Mon 17-Jan-11 13:32:09

Message withdrawn

Would there be any way to unify ALL the relevant organisations and their followers, plus Mumsnet, plus any other interested parties into a singular campaign?

My concern is that it's all a bit too fragmented here, if there are many small groups it isn't going to have the effect as one large push with one voice...

YeButerfleogeEffete Mon 17-Jan-11 16:01:02

Message withdrawn at poster's request.

queenofboak Mon 17-Jan-11 16:09:32

Adding my support.

This makes me sick sad

I'm in, we couldn't afford to live without DS1's DLA, we have so many extra things to pay for we just couldn't survive.

I need to claim DLA for myself really, my body is deteriorating at a rate of knots but I'm not going to bother, most days I look and move around fine so any assesment I had would be useless. People with invisable 'inside' ilnesses are going to be hit hard.

ANTagony Mon 17-Jan-11 16:53:14

So at 39 weeks pregnant with an ASD son who is resistant to crowds, noise and walking marching isn't something I see myself doing in the next few weeks however would there be alternative forms of protesting that could be more disability accessible?

I haven't thought this through but something along the lines of if there is a question time type phone in or debate on some other less urgent topic causing disruption by absolutely blocking all the phone lines, and bombarding emails with the same DLA related questions?

GooseFatRoasties Mon 17-Jan-11 18:01:52

I think we need some attention grabbing, non violent and legal form of protest. Can't think of anything. Ideas anyone?

sarah293 Mon 17-Jan-11 19:08:40

Message withdrawn

kittycat37 Mon 17-Jan-11 19:51:06

I'm rubbish at doing linksblush but could someone who isn't post this thread again in some others to get even more attention? As Glitters did?
I bet we'd get support from some in the politics and feminism sections for instance.

I agree Riven - we need journos on this, and get as much momentum as possible.

I think marching is good but other forms of peaceful protest like sit ins and news worthy stuff are needed if possible.

This government make me so sick and angry.

MissQue Mon 17-Jan-11 19:54:36

Scope, Mencap and Leonard Cheshire are also campaigning against the DLA cuts and changes.

noddyholder Tue 18-Jan-11 08:40:17

This is a great thing for MN to take on

cornslik Tue 18-Jan-11 09:44:04

yes - let's hope all of MN can unite over this one

anything occurring, MNHQ?

poppyknot Tue 18-Jan-11 10:00:53

A whisper from the opposition on the loss of the mobility allowance to those in care homes. Not nearly loud enough though....

here

chatee Tue 18-Jan-11 10:03:18

yes, please lets all shout louder together

cornslik Tue 18-Jan-11 12:01:12

nas page here

cornslik Tue 18-Jan-11 12:04:00

NAS want case studies to use as part of their fight against the cuts - link on that page

poppyknot Tue 18-Jan-11 14:01:21

About the protest.....

here

As I have said before the Guardian is teh only national covering this at all as fas as I can see. sad angry

madhairday Tue 18-Jan-11 15:45:41

Good to see at least the Guardian mentioning it.

Just read through some more of the One Month Before Heartbreak blog. Brings home the reality of how this will affect so many and literally make many disabled people prisoners in their own homes, rather than being more independent as the proposed ruling would have us believe.

ReclaimingMyInnerPeachy Tue 18-Jan-11 15:49:21

Have alr3ady registered my views with the consultation and posted a survey from the NAS on the SN board.

it's awful, we'd be hit far too hard to recover I think. AWould absolutely be a step too far for us, and quite possibly the end of our DLA respite would see ds1 enter foster care.

mynameis Tue 18-Jan-11 15:52:30

sad

Count me in

ReclaimingMyInnerPeachy Tue 18-Jan-11 15:54:46

Oh and to reiterate some stats I use a lot (some are in Guardian article)

DLA- Governmenta ssessment is a 0.5% fraud rate

40% underclaimed (again, state figures)

20% cut will = a minimum of 15% odf people losing it being eligible but as they are altering criteria (eg reducing to 2 lvels instead of current 3 for care) these will be invisible. And alrgely those least able to argue for themselves: people with ASD after all hardly known for their tolerance of crowds in a protest!

if you lsoe DLA you also lose carer's Allowance for your carer, which would eman the carer lost their income; they may be registered then as unemployed with a compulsory attendance at schemes, training etc- if they do nto attend they will ahve their benefits stopped. LOSING DLA DOES NOT MEAN YOU LOSE THE DISABILITY, ONLY ACCESS TO HELP TO COPE WITH IT. (Sorry to shout). I foresee many of the famillies who lose it will end up inpenury as there still is virtually no childcare of flexible enough jobs for famillies with a disabled child; ytou could litera;lly end up outside the system quite easily.

ReclaimingMyInnerPeachy Tue 18-Jan-11 15:55:52

I e-mailed my MP (the useless Paul Flynn that even QI laughs at) about this; I got a message saying 'oh it won;t hurt people like you my dear'

he is LABOUR fgs!

Opposition? Where?

daisy5678 Wed 19-Jan-11 22:28:35

"First, they came for the 'scroungers', and I did not speak out, because I had a job.
(People lost their homes and child poverty soared, but I was OK).

Next, they came for the students, and I did not speak out, because I wasn't a student.
(It put lots of people off university and the mountain of debt that they would inherit, but I was OK)

Next, they came for disabled benefits, and I did not speak out, because I was not disabled.
(Poverty/ depression for carers soared, independence was lost, but I was OK)

Next, they came for the bankers

Next, they came for the NHS, and the teachers, and the public sector but I did not speak out, because I earn enough to pay for private education and healthcare.
(Everything imploded in public services, but I was OK)

And then, my husband left me, I lost my job, I lost my house, developed a long-term illness, my child got hurt in an accident, I had a breakdown...and I was not OK. But nor was anybody else.By that stage, who had the energy left to care?"

Saw this elsewhere and liked it.

YeButerfleogeEffete Thu 20-Jan-11 09:25:23

Message withdrawn at poster's request.

KalokiMallow Thu 20-Jan-11 11:30:50

This thread should be much busier now.

ReclaimingMyInnerPeachy Thu 20-Jan-11 11:43:25

give me that's perect

people think it'ss for otehrs

Well a few eyars ago so did I: 2 diagnoses, one redundancy and a bout of severe illness later not so much.

missismonky Thu 20-Jan-11 11:58:10

I receive DLA. Without it I would be screwed. My needs pale into insignificance compared to others I've read about.

What kind of scoiety believes this is an appropriate place to make cuts.sad

atah Thu 20-Jan-11 12:00:51

full support from me

Mouseface Thu 20-Jan-11 12:05:04

Count me in. If we lose my or DS's DLA and CA, we'll be lost.

I'm so worried about this. For everyone that it will affect.

ReclaimingMyInnerPeachy Thu 20-Jan-11 12:11:45

the DLA website is a nightmare
BUT people can email

Email: consultation.dlareform@dwp.gsi.gov.uk

MmeLindt Thu 20-Jan-11 12:11:52

Am C&P Peachy's response to my question on the DLA reform here, as it is very important

ReclaimingMyInnerPeachy Thu 20-Jan-11 12:00:19

Comments about reforms to DLA (even as simple as 'the current system has one of the lowest rates of fraud and makes an effective support system for a great many people: please leave it alone and certainly do not cut off 20% of people'- obv. your own opinion LOL) can be emailed to:

consultation.dlareform@dwp.gsi.gov.uk

The form can be skipped: it is shite and clearly designed to stop people having a voice. IMO.

If you want to help people like Riven get the assistance they need, start by doing this

Rannaldini Thu 20-Jan-11 12:19:55

For those of us who reside in NI we are supposed to reply via:

David.Doherty@dsdni.gov.uk

We aren't supposed to comment via the normal channels even though this policy will be rolled out UK wide

Columbia999 Thu 20-Jan-11 12:28:05

Count me in. I wasn't disabled on June 1st 2010, but became so on the 2nd. Waiting for the outcome of my DLA application now my pay has been cut in half (but my bills haven't). Am not holding my breath....

Flisspaps Thu 20-Jan-11 12:30:47

Emailed.

Rannaldini Thu 20-Jan-11 12:33:34

Someone said a really decent thing on Twitter along the lines of

Why do we begin this process by taking money away from the poorest and the disabled when no one has asked me for a penny greater contribution?

It really made me think.
For most of us there is an ability to pay or contribute more in one form or another during this crisis.
But for some there is inescapable debt, poverty and the daily grind of living with and funding a disability. Why do we go to this group first for the shortfall?

Just sayin

ReclaimingMyInnerPeachy Thu 20-Jan-11 12:53:21

Rannal

It is becuase the most vulnerable groups are easiest to target

Many carers have depression; theya re exhausted; theya re powerless

Disabled people are often (clearly not always) vulnerable

There is nothing glam about being disabled and becuase everyone is at risk ostrich syndrome is common

And some people think oh they must be able to do soemthing / are lazy / chose this

Some people think you test for all disabilities and choose to keep your child- even if I thought this was valid (I don;t!) it's not true anyway.

Someone on MN once said if they were severely disabled they would simply get a job.

Really?

Who'd employ you if you needed to be hospitalised weekly, if your IQ was severely impaired, if you had zero attention, if you ahve behavioural issues and thumped people, if you could not do your job?

Espeically when atm there are 2.5 million others after your job!

And who'd employ your carer when they are exhausted, need to take time out for meetings all the time, sit edgy by the phone, can't find chidlcare?

Rannaldini Thu 20-Jan-11 13:01:37

I wasn't actually asking a question! thanks though grin

KalokiMallow Thu 20-Jan-11 13:06:09

"Someone on MN once said if they were severely disabled they would simply get a job."

Any thread on disabilities always ends up with comments about how someone knows someone who works despite being disabled therefore all disabled people should work. I think you are right about it being ostrich syndrome, it's too much to bear to imagine your life being turned on it's head by your own or a relatives disability. It's easier to pretend it only happens to other people and that there is some control over it (therefore it couldnt happen to you)

MmeLindt Thu 20-Jan-11 13:13:25

Someone on Twitter asked why MN doesn't set up a Respite Exchange board.

I presume in Riven's case, that this would not work due to the severity of her DD's health problems?

Thing is respite care is so very varied, I think Riven's DD needs quite specialist care ie tube feed etc more nursing based. My kids would need carers with specialist knowledge of ASD and its effects.

Anyway this is DLA. Without DLA as a 'passport' we would get no other financial help. We'd have no money and no way of earning it due to our caring commitments. Please help the campaign.

ReclaimingMyInnerPeachy Thu 20-Jan-11 13:19:15

I confirm that Mme

I ahve some nursing experience and similar but could not use the equipment

For us, someone would have to be trained in dealing with aggressive people. I could ahrdly open a MNer up to the possibility of aggression.

Rannaldini Thu 20-Jan-11 13:46:55

anyone seen this?
the numbers spouted by Osbourn are at best a fiction

forty per cent of people who are entitled to it also don't claim it....

MmeLindt Thu 20-Jan-11 14:04:29

I think that Osborne info was on MN. I am confused now where I have read what.

I have asked MN to lock the other thread and direct those who want to help over to this thread.

TotalChaos Thu 20-Jan-11 14:08:35

Yes, count me in.

MmeLindt Thu 20-Jan-11 14:18:04
mamsnet Thu 20-Jan-11 14:24:03

I am a very fortunate person. And reading MN I am reminded of this every day.

I don't know if this is a good place to do so but I would just like to say how much I admire all of you who live with disability in your families. You are an inspiration to society.

I will support this campaign in any way I can.

radiohelen Thu 20-Jan-11 14:25:42

I watched the Children's Minister (dunno her name - it was a bird though) saying that they wanted to move away from ringfencing money as it put limits on councils to use the money in the best way and meant they couldn't provide "joined-up" services. Then she said they were giving more money to councils to help disabled families.
They REALLY don't get it and they are clearly in a buck passing exercise. Central government will blame the local councils and say they are giving them more money. The local council will point to reduced government funding and say cuts have to come from somewhere. It's a perfect news circle for them where no-one takes responsibility.

MarioandLuigi Thu 20-Jan-11 14:34:48

Dont know if this is the place to put this, but the National Autistic Society sent me this link asking any parent or carer of a child with ASD to fill it in.

here

maxmissie Thu 20-Jan-11 14:35:53

Count me into this as well, have emailed a response to consultation on changes to DLA and will be emailing my MP as well.

Don't understand the issues in great detail and don't have a disabled child but from spending two weeks in hospital with my ds was enough to make me realise that care and support for children and their families is severely lacking under the current system let alone under a new one.

Agree with radiohelen it's always someone else's fault in these type of situations and councils and the government will always try and pass the buck.

ReclaimingMyInnerPeachy Thu 20-Jan-11 14:37:39

Mario it's the perfect place.

I annot reiterate how important teh DLA email thing is. Demand on respite services will soar if people have less money and mroe people will face care for tehir children or homelessness.

maxmissie Thu 20-Jan-11 14:46:20

Just also linking to Every Disabled Child Matters website www.ncb.org.uk/edcm/home.aspx

They are doing some stuff relating to DLA as well as other issues relating to disabled children, including the number of nappies per day - you can send an email via their website to the chief exec of your local PCT(I think) asking whether they are aware there is not a blanket restriction.

blue22 Thu 20-Jan-11 15:11:17

Adding my support

funnyperson Thu 20-Jan-11 15:21:04

The changes are significant and will probably not be able to be implemented due to the extra assessment work and reviews needed it will cost more to implement the changes than to stick with the current system.
No one has thought through who is going to do the assessments. The non existent occupational therapists and social workers perhaps? Social workers are rushed off their feet with child safeguarding let alone trying to assess people who under current guidelines would qualify for an automatic payment. It is a lot of extra work.
Furthermore it reads as if those who are severely impaired for less than a year wont qualify- thus people after serious operations or chemotherapy for example- this is a major concern.
When are we going to see a consultation document on clawing money back from the bankers?

I am Mum to a 6 year old boy with complex and severe special needs plus 2 other children. i had to give up my career to care for him 24 hours a day and my husband can only work part time. If we lose our DLA we will be on the breadline. It's hard enough having to care 24 hours a day whilst grieving for the child you almost lost to meningitis, If I have to worry about food and clothing and heat too i will not survive.

Manmum101 Thu 20-Jan-11 15:42:05

Started a group on FB http://www.facebook.com/home.php?sk=group_13456801 6607731 feel free to join

princesspuds Thu 20-Jan-11 15:49:53

Adding my name as well as a mum to a disabled child I think these proposed cuts are ludicrous

ReclaimingMyInnerPeachy Thu 20-Jan-11 15:51:15

YY to the year bit; that is awful.

I am lucky that my boys are not as disabled as some on here although their needs are significant; those needs are different.

For us it's in part having 2 chidlren with sn that has disrupted it all- 2 sets of doing every review etc.

But also- because ds1 isn;t visibly disbaled but needs 24/7 the current system works well as it sees beyond that to the way he rpesents as a child rather than just his DX which can be rather mild in some.

The assessments will not see that.

It is assumed the same pool of assessorts will be used as with ESA where people with non visible disability has been hit REALLY hard- NAS have some info on their website iirc. Non professionals, certainly not SWs and the like.

I did suggest in my submission they might like to employ me mind as I am studying ASD- bet they won;t grin

MarioandLuigi Thu 20-Jan-11 15:59:53
fibiek Thu 20-Jan-11 16:16:22

Add my support. Foolishly I thought that Mr Cameron would help those carers / disabled.

Katie50 Thu 20-Jan-11 16:31:31

As the parent of a severely disabled child I'm going to stick my neck out here.

What's so great about DLA? The system's c**p. Nearly everyone I know has only got it on appeal - I even know identical twins where one was initially awarded high rate and one low! DLA doesn't begin to cover the costs of getting someone else to look after my child; allowing them to have a social life - allowing me to have a social life! It doesn't even cover the basic extra costs of having a disabled child.

I feel very afraid, because I don't think the Govt begin to understand the reality and costs of bringing up a disabled child. DLA's only the starting point. Then there's carers allowence, respite, direct payments, charity support etc. It's vitally important that the Govt understand how vital all those are to us too.

The Govt also need to understand that there's a barely contained flood gate of people barely coping who only need a slight push to put them over the edge and their child into care. The fear of those costs alone should be enought to make them sit up and do this properly.

Why are we fighting to keep DLA? Why aren't we fighting to make PIP a system that works?

Please, please, please complete the consultation.

ReclaimingMyInnerPeachy Thu 20-Jan-11 16:34:13

katie because PIP comes with 20% cuts

And becuase I don;t give a damn what name it has but what they propose is awful: 20% cuts, longer qualifying period, deductions for adaptations etc you already have, assessors who know little visiting and deciding on the basis of 30 minute visits (how can youa sssess someone with say schoizophrenia in that time?), only two levels of care......

DLa has it's flaws but PIP as it stands will be worse

ThisIsANiceCage Thu 20-Jan-11 16:38:07

PETITION HERE

You need to register to sign it, but it only takes a moment.

Can everyone who supports this thread please sign it?

FioFio Thu 20-Jan-11 16:39:52

Message deleted

ThisIsANiceCage Thu 20-Jan-11 16:40:22

NB This is the same petition linked to by Mercedes excellent thread So now we've got headlines about disabilities lets talk about DLA.

Just wanted to make sure all here have seen it.

GooseFatRoasties Thu 20-Jan-11 16:40:51

Petition signed.

FioFio Thu 20-Jan-11 16:41:42

Message deleted

ReclaimingMyInnerPeachy Thu 20-Jan-11 16:44:23

Fio do you really want to know?

last I read on CA the Government said they didn't know what to do about CA but they didn;t think that £53 was very effective.

people voted for this???/

Outgoings £52 income £53 smiles (to paraphrase LOL)

Income sod all, outgoing £52 misery.

FioFio Thu 20-Jan-11 16:47:02

Message deleted

ReclaimingMyInnerPeachy Thu 20-Jan-11 17:10:05

They said it didn;t help people avoid poverty

It helps people avoid worse poverty at least

there was a consensus by parliament (can;t remember exactly whcih group) that CA shouldf be £100 pw but that got dropped in cuts

So apparently as they cant do £100 £0 is better than £53?

And these people are educated?

And you know it works like this:


DLA claimant is refused DLA as is one fith of the disabled population of UK

They don;t get carers

They get signed up for JSA

Six months alter bod in JSA office decides they could do more to get work, signs them onto week of free labour thing

They cannot turn up as they have someone to care for

Their benefits all end immediately, becuase officially they don;t have anyone to care for

argh- and they call that a system?

FioFio Thu 20-Jan-11 17:13:28

Message deleted

Mouseface Thu 20-Jan-11 17:14:26

Signed.

WRT Carers Allowance, how can the Government justify paying full time carers £53 per week for caring for a disabled/SN/ill child, when it costs around £15 an hour to have someone to come and help you at home/respite care?

Do any of the carers here do less than 24 hours in their day? I doubt it and if they do you can bet it's maybe only a few less.

Regardless of whether or not it's your child that you are caring for, you should have the same amount of money as anyone else would get paid.

No?

We care for our children because there is no-one else to do it. We want them at home with us. We want to know that they are well looked after, their meds are given on time, their feeding tube is clear and in place.

We want to know that they are fed, clean and safe and dry. Not sat in a soiled nappy or clothing for hours on end.

Or is it just me that has had bad experiences with hospital staff who are 'supposed' to be taking care of my son so that I can go and sleep for an hour or two?

We want to care for them because as parents, that's what you do.

So CA is massivley important, as is DLA.

If we didn't get these, I would have to try and find a suitable job (I have mobility issues and am classed as disabled also) but who would take care of my son?

My husband works full time. My father works, my mother has MS and they live miles away from us. My PIL are both retired but live over 2 hours drive away too.

I can't not fight.

Sorry, rant over blush

FioFio Thu 20-Jan-11 17:19:49

Message deleted

CinnabarRed Thu 20-Jan-11 17:21:53

Signed.

ReclaimingMyInnerPeachy Thu 20-Jan-11 17:25:40

CA proposals are a mess. I have sent IDS my list of what he should be doing but no response- <<rolls eyes>> (a lot of the charities are finding him that responsive apparently- one, I think a carer's one, went to see him and he never follwoed up at all)

I am trying to get work; I'm ignoring quite a few things in fact in that effort- such as the psoriasis that ahs scarred me quite significantly and for which I have yet to find a tiome when I can see a GP without large number of kids in tow blush

I cannot work any harder at trying to get abck on my feet

LaWeaselMys Thu 20-Jan-11 17:38:19

Bumping this to say have added to the stuff we did yesterday to include your campaign

Care For Carers Blog

If anybody wants me to add/change anything I will be around tonight

Mouseface Thu 20-Jan-11 17:49:49

Link did't work for me Weasel

JaxTellersOldLady Thu 20-Jan-11 17:49:58

I have signed the petition. My parents and PIL rely on this DLA to live and get around.

Without going into too many personal details my mother cannot get necessary health care/operations for herself because she is my Dads main carer and of course if she is in hospital who will provide everything that my dad needs?

I live 400 miles away and do what I can to ease things for them, my sister god bless her, does lots and lots for both of them on a more practical level.

This is a far bigger issue than most people realised I think.

FooffyShmoofer Thu 20-Jan-11 18:45:00

Signed.

Mouseface Thu 20-Jan-11 18:51:56

Jax - exactly. If you mother wasn't able to care for your father, what would happen?

This certainly is a bigger issue. For far more people than might have been thought.

poshsinglemum Thu 20-Jan-11 18:54:06

I'm with you.

goingroundthebend4 Thu 20-Jan-11 18:58:10

im in with a wheelchair ye sit increases ds moblity but dont think they have one that climbs steps or where his arms keep going as long as a 6 year okd child can walk .Oh and that aid they provide is to heavy for him so i had to purchase a lightweight chair now shall i send them the bill

Mouseface Thu 20-Jan-11 19:17:28

Can you imagine if we all sent 'the bill' in?

LaWeaselMys Thu 20-Jan-11 19:24:06

sorry was being daft (am a bit knackered, although not as much as some of you!)

go to Care For Carers

docfunk Thu 20-Jan-11 19:26:37

I have just joined to post on here after reading about the DLA and the family in the papers with the disabled child not getting much help and having a discussion about it at work I wanted to get some more point of views,

I have a 11 yo boy,when my partner found out she was pregnant went to the doctors etc,then we had a scan, we were told this scan can tell the sex of the child and if there are any abnormalities with the fetus,thats why it is so early in the pregnancy. With Medical Science as good as it is these days it will spot pretty much any problem early on, so my question is. Why if a pregnant mother knows their child will be very disabled do they go ahead with it,surely they understand that the child,if born will need special care 24/7,that it will cost a fortune and put a huge strain on their lives, fair enough if they are rich and can afford private carers 24/7 but if they are not why should they expect help given to them for free and burden the rest of the already stretched health service?

Mouseface Thu 20-Jan-11 19:37:05

biscuit

Petition signed.

Who was it that said something along the lines of 'it is a measure of any society how it treats its most vulnerable' or something similar?

Measured against that benchmark we (as a society, I mean; individually we are all marvellous of course hmm) have little to be proud of...

sad

confuddledDOTcom Thu 20-Jan-11 19:42:45

Oh heck, just followed a link from Facebook to the BBC to here (through Riven's link)

I see the trolls are out on this one too! MN must have had 100s of new members this year all coming to set us straight on something!

Shall I go to the other thread and fetch the crash helmets, pillows, wine and paracetamol?

Mouseface Thu 20-Jan-11 19:42:50

Actually, balls to the biscuit.

doc - I had all the scans, all the appointments before giving birth, took all the advice given to pregnant women.

Infact, I had additional scans due to my own health issues.

Do you know what? NOT ONE of the scans picked up DS's life threatening heart condition, or his restricted airway, narrowed jaw meaning he was unable to breathe without tubes for the first 4 months of his life, or his cleft palate, or the hole in his heart.......

Or any other of his conditions.

NOT ONE.

So, I'd seriously think about what I were posting if I were you.

And for the record, even if the scans had shown his disabilities/conditions up before birth, I would NOT have terminated the pregnancy.

As is my right.

Now please, go away unless you have something helpful to add to this campaign.

ThisIsANiceCage Thu 20-Jan-11 19:44:06

If you're talking about the case in the papers, I understand (from people here who know Riven) that her daughter was injured during birth.

Other people may have religious objections to killing an unborn child.

For myself, I became disabled as an adult at what should have been the peak of my working life.

There are many ways to become ill and disabled: tomorrow, docfunk, it could be you. Or your 11 year old.

And by the way, Riven was specifically worried about asking for help because she said there were people like you out there. It was hard to imagine. Now here you are, joining MumsNet specially to say her daughter should be dead. Nice.

docfunk, you have a right to your opinion, but frankly it is offensive. And incorrect (wrt all disabilities being detectable before birth). If your, or any other child were to have severe and complex needs after an accident say, should society not be burdended with the cost??

Shame on you.

Mouseface Thu 20-Jan-11 19:44:39

confuddled - yes please, large glass of wine is needed here.

I'm a little bit cross tonight.

ReclaimingMyInnerPeachy Thu 20-Jan-11 19:50:51

Docfunk thats not so

scans only pick up some congenital abnormalities and theyc an test for certain genetic disorders

So many things are missed or happen later; autism cannot be picked up, CP tends to occur later or even after birth

People walk out in front buses or catch a virus that causes brain damage

Scans and tests pick up far less than we often think and I do worry that people think they get the all clear for an NT baby when its most certainly not

KalokiMallow Thu 20-Jan-11 19:51:04

docfunk
a) not everything can be tested for,
b) not all tests are offered to everyone
c) not all tests are 100% accurate
d) some people have enough money/support at birth but circumstances change
e) some disabilities are not there at birth
f) some people do not agree with abortion
g) some people long for the baby so much that they cannot bear to give up on it

oh and
h) a disabled person is worth 10 of you

docfunk Thu 20-Jan-11 19:51:54

I don`t know the circumstances of her child's problems, it was just that story that started the discussion at work.

Mouseface,your childs problems were not seen in the scans,OK fair enough nothing could be done.
But if a mother knows there will be problems for the rest of the childs life costing the tax payer hundreds of thousands of pounds do you think that is fair? They had the child it is their issues not the rest of the populations.

Triggles Thu 20-Jan-11 19:52:02

docfunk before you get flamed, I will point out that (since obviously it hasn't occurred to you) some disabilities are NOT visible on scans. No scan will show severe autism, for example. And many disabilities occur at the birth, due to an abnormal or difficult childbirth causing lack of oxygen in the baby or physical trauma. Some disabilities occur after the birth and are due to trauma or severe illness of some sort.

Oh, and just a note, those scans that involve "medical science as good as it is these days" ??? They couldn't even tell if our DS2 OR DS3 were boys or girls during the pregnancy. So, no, scans are not always that good. There are tons of things that can affect their accuracy.

Not to mention that your idea that only babies of wealthy people have a right to life is appalling and sickening. Have a biscuit

Mouseface Thu 20-Jan-11 19:52:52

<claps like a starved seal at KM and in particular point h>

kittycat37 Thu 20-Jan-11 19:52:56

docfunk

you sound like a eugenicist - uuuggghhh, you've made me feel quite sick, I didn't know people really had opinions like that apart from in 1930s Germany.

ReclaimingMyInnerPeachy Thu 20-Jan-11 19:55:32

Much as I do detst docfunks opinions (and really I do) I also think the media spins what can be tested for.

I know my autism; just handed in my MA module on aetiology so i think we will agree yes?

We're nowhere near a test, not even a glimmer: yet the media makes it sound when they find a link in say 0.00001% of cases that the test starts tomorrow

And I think docfunk needs to consoider what life is really like: all my sons were born when we were financially OK; redundancy and- whoosh.

Mouseface Thu 20-Jan-11 19:56:22

OMG - doc

Did you really just post that?

docfunk Thu 20-Jan-11 19:59:57

Peachy...
Close on the heels of a cancer-proof baby being born in UK, screened in the womb to exclude a cancer-causing gene, a new research raises possibility of prenatal screening for autism by potentially identifying the condition in unborn babies.
Scientists at Cambridge University discovered that high levels of testosterone in the amniotic fluid of pregnant mothers was linked to autistic traits in their children, the Telegraph reported on its website on Monday.
The findings raise the possibility of undertaking tests in the womb to detect the condition, which would allow parents the controversial ability to decide whether to terminate fetuses. Experts are now calling for a debate on the consequences of the screening process, called amniocentesis, which is already used to detect Down’s syndrome in unborn babies.
“If there was a prenatal test for autism, would this be desirable? What would we lose if children with autistic spectrum disorder were eliminated from the population?” professor Simon Baron-Cohen, director of the research team, was quoted by the Guardian as saying. “We should start debating this. There is a test for Down’s syndrome and that is legal and parents exercise their right to choose termination, but autism if often linked with talent. It is a different kind of condition.”
Experts from the university’s autism research centre discovered the testosterone link after studying 235 children from birth to the age of eight. They found that when high levels of the hormone were found, children showed autistic traits such as a lack of sociability and verbal skills by the time they were eight.

KalokiMallow Thu 20-Jan-11 20:02:03

"possibility"

Yeah.. you might want to look that word up.

I mean I could say there is a possibility of you developing empathy, but it doesn't mean you will.

theriverrunsthro Thu 20-Jan-11 20:03:07

Well done the mums who have exposed this weakness in government policy regarding help for the disabled. Actually I am a granny, however I am still a carer at 66. I have cared for a severely disabled Son for over 40 years and had to fight every day for the appropriate help for him and minimal respite over the years. I have 3 other children. I am now a widow and have an on going condition. The care of a disabled child is a life time commitment and never stops, and a reasonable amount of respite is esssential for the family to survive. the threat to raise the elegibilty criteria from substantial from critical would potentially leave thousands of disabled people, children and their families with no support.
Many local authorities have closed or are about to close local day services. Norfolk County Council wants to sell off their purpose built Day Centres, where they have well equipped workshops which were productive (but have been run down)and have a social hub. The big idea is to get people out into the 'community' and get jobs. are they joking? They will be wandering round the local Pound Shop and sitting in cafes.

One other great concern is the government proposal to remove the mobility component of the DLA (Disability Living Allowance) of people in residential homes. these places already run on a shoestring of funds with dedicated staff who are already on a low wage. This would trap many disabled people who are unable to leave the house/ home without a carer, and would potentially be an infringement of their basic human rights. These are bully tactics by the government, attacking the weakest in society. Surely the mark of a truely civilized society is the degree to which it cares for the young, the weak, the old and the vulnerable in that society. PLEASE SEE REPORT BY CHRIS EDWARDS www.org.uk/news-and-events/news/report-cuts-slash- living-standards-disabled-people-norfolk

ReclaimingMyInnerPeachy Thu 20-Jan-11 20:04:34

oh docfunk the RC got really upset about how that research was portrayed in the press; becuase that wasn;t how it should have been presented

Even if they had tehre's be no difference between so little affected that it was invisible to incredibly severe

Autism is not any one thing; it is diagnosed by the presence of symptoms that can present wildly differntly- google the triad of impairments. It can range from barely affected to severely impaired.

We know some have a mitichondrial disorder, some have brain damage, there are some genes ivovled but a few differnt ones.

We know kids born in areas near freeways have a higher risk but not why.

We know nothing.

ALthough I understand that the ARC research WAS badly presented and misleading it is not reality

ReclaimingMyInnerPeachy Thu 20-Jan-11 20:06:08

[[http://www.autismresearchcentre.com/docs/papers/ 2009_Auyeung_etal_PsycholSci.pdf here's[[ teh actual research

ReclaimingMyInnerPeachy Thu 20-Jan-11 20:11:30

Just to show he wanted to talk about tests BEFORE anything was developed becuase well it ahsnt been:
'Baron-Cohen was interviewed on BBC Radio 4 and was featured on the BBC news page calling for an ethical debate on the issue of a prenatal test for autism, arguing it is important to debate this in advance of such a test existing, given the pace of biomedical research in autism. '


A test for parts of ASD will happen and those will probably be given different names and separate identities but not autism as a one-thing. Well look up definition of syndrome- it is not.

KalokiMallow Thu 20-Jan-11 20:15:25

docfunk Forgot to say, autism is a huge spectrum with varying symptoms. Having autistic traits does not equal "costing the tax payer hundreds of thousands of pounds"

So either bother to do some proper research or STFU

ReclaimingMyInnerPeachy Thu 20-Jan-11 20:16:37

I'm tired and have done my aptient bit
can we just go for stfu?

KalokiMallow Thu 20-Jan-11 20:17:12

We can only hope reclaiming grin

Mouseface Thu 20-Jan-11 20:17:53

Yep Peachy.

Too tired tonight. Did you see my fb reply to you BTW?

docfunk Thu 20-Jan-11 20:20:26

Message deleted by Mumsnet.

corinewmoon Thu 20-Jan-11 20:20:29

I am in . I have supported people to apply for DLA for years. The new proposals as they say talk about focusing the benefit on those who need it most, but what does that mean? Only the most severely disabled people will receive it. WHat about the those with moderate level of disability who also need support. DLA was a nightmare, but it was possible to prove you needed the benefit through reports and appeals. It sems this new system is going on to be based on a medical assessment by a professional, yeah right!

ReclaimingMyInnerPeachy Thu 20-Jan-11 20:22:47

Message deleted by Mumsnet.

docfunk Thu 20-Jan-11 20:23:21

Oh it looks like this is one of those forums where if the mods don`t agree with something they delete it.

ReclaimingMyInnerPeachy Thu 20-Jan-11 20:23:57

MNHQ can delete yes

they own it after all

plenty of forums out there will ahve you nop doubt

StartingAfresh Thu 20-Jan-11 20:24:12

daftpunk?

Am I in a parallel universe?

Triggles Thu 20-Jan-11 20:25:38

SA yes, I wondered about that as well, as the name is close

docfunk Thu 20-Jan-11 20:27:24

Ok,I will re-phrase what I said...
Why should I pay to look after someone eases child?
I wouldn`t expect you to look after my child he is MY responsibility.

CatIsSleepy Thu 20-Jan-11 20:29:29

you have my support, signed the petition

StartingAfresh Thu 20-Jan-11 20:29:47

Sure doc, whatever. I thought we were a civilised society, but if you really believe in paying just for what you personally benefit from then I'll patent my idea for pay as you go street lamps, that are triggered by an electronic oystercard type electronic device that only come on when you walk past them (unless you haven't topped up recently)!

Triggles Thu 20-Jan-11 20:30:36

Well, let's turn this around then.

If you or your partner or your 11yo are sick or injured and require ongoing medical care, why should we pay for you? Why should our NHS be burdened with your care? After all, you're not OUR responsibility.....

Mouseface Thu 20-Jan-11 20:30:37

doc - you are missing the point of this by a country mile.

But then again, being the fittest and surving all others must be a huge burden for you.

Why are you picking a fight here?

ReclaimingMyInnerPeachy Thu 20-Jan-11 20:33:32

Difference is doc that if it does happen- and it may- we will be here helping you get some support.

What makes youn think we never paid taxes anyway? Or that nbody inour household does?
Oh narrow minded bigotry, course. Sorry.

Disability costs thousands a year; a palce min a resi home thousands a week

Hope that bank account has enough for each of you to pay that yourself if you were injured? Which i hope not btw. I would not wish that on anyone.

KalokiMallow Thu 20-Jan-11 20:34:07

"Why should I pay to look after someone eases child?"

So you don't use the NHS then?
How about the roads and public transport to get places?

Are you really that stupid that you think that you are a poor little burdened taxpayer getting nothing back? And do you really believe that no one with disabilities or disabled children ever pay taxes?

You are a fuckwit.

docfunk Thu 20-Jan-11 20:34:19

You won`t I pay in to private medical care as I do a lot of winter sports and they are high risk,I don`t want to sit in some dirty over stretched NHS corridor....
I wonder why it could be over stretched???

JustineMumsnet (MNHQ) Thu 20-Jan-11 20:34:58

Hi all, we've received this note from Laura, Campaign Manager at Every Disabled Child Matters:

I can't stress enough how significant today has been. Certainly since I have been working at EDCM, these critical issues for families with disabled children have never had such sustained media attention.
We hope that it will result in a high volume of people taking our action to challenge local authorities, and will signficiantly increase the political will to act to address issues for disabled children.

I really hope that Riven gets the support she needs because of it. Please do pass on our good wishes to her. If she would like to take a legal challenge at any point (although it may well now not be necessary!) we have friends in the legal professional who would be happy to give preliminary advice.

And we would also like to say a massive thank you to all Mumsnetters! They (and you at Mumsnet HQ) truly are unstoppable.

Laura Courtney
Campaign Manager
Every Disabled Child Matters
Council for Disabled Children
National Children's Bureau

ReclaimingMyInnerPeachy Thu 20-Jan-11 20:35:24

Good luckmwith that then##Seen people trying to amke private last a lifetime one too many times.

Mouseface Thu 20-Jan-11 20:38:04

Oh, on the other hand, if you don't want to pay for all these pesky disabled children, why not go cut your own leg off?

Throw yourself under a slowly moving car?

Starve yourself of oxygen for a while?

That way, you can claim the benfits you'll be entitled to as a disabled person and ensure that not one penny of your hard earned cash goes towards the upkeep of a life support machine, a little boy who needs a walking frame to get around his house, an elderly lady with mental health issues who requires round the clock care to make sure she doesn't burn her mortgage free house down?

Seriously?

I payed tax all of my life before I had to give up my full time job to care for my son.

I don't begrudge him or others a single penny of that. And nor would I if he had been born with no Complex Needs at all.

KalokiMallow Thu 20-Jan-11 20:38:13

So you don't use any of these things then? God forbid our taxes should fund you in any way!

To prove you disapprove of anyone putting money towards things used by others from now on you must desist from using
-roads
-pavements
-rubbish collections
-tips
-public transport
-libraries
-parks
-etc.

LaWeaselMys Thu 20-Jan-11 20:40:18

Thanks for that Justine.

Will add their campaign to the blog.

StartingAfresh Thu 20-Jan-11 20:40:37

doc, unfortnately for most disabilities private medical insurance only covers you as far as the diagnostics, not the care.

Mouseface Thu 20-Jan-11 20:41:03

Excellent news Justine

Thanks for posting that smile

docfunk Thu 20-Jan-11 20:42:20

We all pay for public utility's through our income tax and the tax on the goods we buy.

YeButerfleogeEffete Thu 20-Jan-11 20:43:10

Message withdrawn at poster's request.

LaWeaselMys Thu 20-Jan-11 20:43:56

Or I would if it would open.

Will try later when there's less traffic.

confuddledDOTcom Thu 20-Jan-11 20:44:00

Bet this will upset you, I turned down testing in all of my pregnancies. I will have approx 30 scans this pregnancy but I will not get any testing done. They are going to do a heart echo because of heart conditions in the family and will be doing growth scans and placental echo because I have a condition that causes IUGR which happened last time. But all of those are to keep informed.

I'm sure if there's anything to see there's plenty of chance to see it. If there is anything to see then I will be keeping my child because it is my child and they're irreplaceable and not interchangeable. (deja vu anyone?)

My mum was in her late 20s and a doctor asked how her spina bifida affects her. Her answer? "What spina bifida?" As far as Mum was concerned until that moment she didn't have it. There weren't scans when she born so no one until that moment had reason to pick it up. What if her mother had known and aborted her? It's never affected her, she was a hurdler at school, but how would her mother know that? She could have been a massive burden on the NHS...

Then there's my daughter. Spontaneous labour at 31 weeks, she had to be put on a ventilator and had loads of expensive treatments. For the first two years she was in hospital once a month with complications from her birth. Now they have her on massive amounts of medication, more than most adults but it barely touches her. We're seeing the paediatrician tomorrow and I'm expecting it to be increased.

You can't guess who will be a "drain" and who won't be. What looks serious on a scan could be fine when the baby is here, what's a healthy baby in the womb could suffer complications at birth and need expensive treatments. If you're really worried, maybe you should try out American sick care.

KalokiMallow Thu 20-Jan-11 20:46:54

"We all pay for public utility's through our income tax and the tax on the goods we buy."

Wow.. really? Do you think that maybe, just maybe, that was the bloody point?

Tell you what, you pretend that all your taxes go to only the things you use, and the rest of us can have our taxes go to people who really need them.

docfunk Thu 20-Jan-11 20:47:30

I work with normal working class blokes,all of us earning less than 20 grand a year,its strange how all of them have the same opinion?

ThisIsANiceCage Thu 20-Jan-11 20:47:32

Hmm, DF may not be a troll, but should we stop feeding it anyway? This particular thread has a job to do, DF can go and be vile on contribute to one of the many threads on which NHS funding is discussed. Or start one of his very own on which to sit and juggle his bollocks make valid and well-informed points.

LaWeaselMys Thu 20-Jan-11 20:50:21

So campaign.

I know you guys started this last week (or earlier?) what is the plan/aim to get message across?

Is it aiming for as many signatures as possible?

Mouseface Thu 20-Jan-11 20:50:45

Agreed Cage

<sits on hands and ignores DF from here on in>

ThisIsANiceCage Thu 20-Jan-11 20:52:09

docfunk, you may find this thread more to your liking (and with mildly less danger of getting lynched).

docfunk Thu 20-Jan-11 20:52:27

No I am not a Troll,I was just trying to get an answer for my first post?

KalokiMallow Thu 20-Jan-11 20:53:34

I believe the plan was to raise media awareness of the proposed cuts to DLA rather than have it brushed under the rug, which is what seemed to be happening.

From the thread that influenced this one, I believe it was hoped the MNHQ would run an official campaign.

LaWeaselMys Thu 20-Jan-11 20:57:45

Okay.

Will keep plodding away with blog and twitter etc. (Have an ace friend who is nothing to do with MN or disabled causes pimping like mad)

LaWeaselMys Thu 20-Jan-11 20:58:39

Does anyone think it is worth contacting people who wrote articles yesterday and seeing if they'll do a follow up on the DLA cuts?

Mouseface Thu 20-Jan-11 21:00:55

Weasel - I think it is, especially as the two are kind of linked in terms of money in the pot IYSWIM?

ThisIsANiceCage Thu 20-Jan-11 21:05:13

LaWeaselMys

Not a correction for tonights blog entry, but perhaps a thought for anon. It struck me that you said: "After all anyone could have a disabled child, a disabled parent, a disabled partner."

Yep. Or be disabled themselves.

That wasn't strictly a Does He Take Sugar moment, as you were talking in the context of carers, but us carees have opinions on the matter too!

This thread has some interesting comments, although the level of care discussed varies greatly.

Superb work with the blog!

KalokiMallow Thu 20-Jan-11 21:05:13

Worth a try isn't it?

ThisIsANiceCage Thu 20-Jan-11 21:07:45

Oh yes please! For the DLA cuts follow up articles.

lisauk72 Thu 20-Jan-11 21:10:51

I had to say something on this thread because one comment has made me fume a little I'm afraid.
"You only have to phone up and they dish out DLA" Um..no they dont.
I had to fight for over 6years to get it for my daughter, and that was in the knowledge that in another part of the country another child with EXACTLY the same disabilty was getting it, and had been so since she'd been old enough.
Disabilty benefits are okay if you have the right disabilty. My husband is visually impaired, he only has about 40% eyesight, so too much to be registered blind. He's only entitled to lower rate mobilty and lower rate care. Only totally blind people are entitled to higher rate mobilty even though my husband still needs the same amount of assistance that a blind person does. Yes he works but is on a very low wage because as we all know disabled people dont get well paid jobs.
Our daughter is also visually impaired, has aspergers syndrome, and suffers with anxiety so bad she's not attended school for a year and can't go anywhere without me. She gets lower rate mobilty and middle rate care, again I had to fight for that. They get nothing else apart from the disabilty coponant of Tax credits.

As for that lady complaining that she only gets 6hours respite or so from her daughter. I'm sorry but lucky her. As I said my daughter has been out of school for a year and in that time I've had NO time away from her. I've been with her 24/7. She can't cope if I go out without her, and she's certainly not able to cope going out without me. I've lost most of my friends, my marriage is non existant anymore, all the hobbies I've had i've had to give up because I'm living around my daughter, as for time for me? forget it, thats a thing of the past.
The last time I had 6 hours respite from my daughter was probably sometime in late 2009.

LaWeaselMys Thu 20-Jan-11 21:11:28

Oh yes! Of course.

No I'm happy for corrections. I'm not disabled, I'm not a carer. I just think all this is a bag of shit and I want to do something to help.

I also keep having to go back and change cute to cuts, so any typos also please report!

*

I think getting in touch with the reporters would be a good idea - but I am going to have to be crappy now and say I can't do it because I won't be around to field any responses etc (I have to cook for 100people tomorrow host an event at the weekend and won't be online again until monday probably)

If you go to the online version of each article there is usually a way to contact the author.

LaWeaselMys Thu 20-Jan-11 21:21:57

Had a google Amelia Gentleman wrote the guardian article and a follow up today according to their site her email will be: Amelia.Gentleman@guardian.co.uk

Could also submit emails for the letters from readers page. Letters for publication should be sent to these addresses. The sender's full postal address and phone number are required, for verification only: letters@guardian.co.uk

LaWeaselMys Thu 20-Jan-11 21:24:26

For The Times I can't get into it properly because I don't pay, but go to www.thetimes.co.uk/tto/news/ and in the top right next to the search box there is 'contact us' click that, click 'Do you have a story' then submit a short summary of cuts.

Toastiewoastie Thu 20-Jan-11 21:31:40

What is PIP?

I don't fully understand what the government are planning to do?

Sorry, I am lucky enough to not have to rely on DLA, though a friend of mine gets the lower rate for her panic attacks, don't really understand...

Could someone please explain briefly and succinctly without links to lengthy websites. Thanks.

YeButerfleogeEffete Thu 20-Jan-11 21:37:13

Message withdrawn at poster's request.

Ableize Thu 20-Jan-11 21:39:30

I run Ableize, the UK's biggest disability resource and have received over 100 emails from greatly concerned disabled people, their families and carers. There are a few petitions around concerning the DLA issues sign the petition here. www.surveymonkey.com/s/lcdDLA

www.ableize.com

KalokiMallow Thu 20-Jan-11 21:46:43

Thank you for that link

Minimes Thu 20-Jan-11 21:47:42

Hello mummies, well it seems this government is defo out for the families who need there support the most. My mum has three disables children, I say children but there young adults all in the twenties n one in his thirties... Who she look after at home, it's hard but she would never dream of putting them in to care, defo. Become harder, respite charges are a fortune, where the care is not great, I can tell this government need to support families which really need there help.... You would think mr cameron havin a child with learning difficulties would understand the needs of parents a children more, but being wealthy he wouldn't and couldn't understand their needs.....that all for now

docfunk.... once you've made sure you've eradicated the disabled then perhaps you could eradicate those that are not white, blonde and blue eyed?

Then we can all be perfect.

Disabled people contribute to society as much as anyone else. Probably more than you do given your opinions.

buzzyB Thu 20-Jan-11 22:40:56

Hmmm. At the risk of being flammed to death I do have to say that I feel that a change needs to be made to DLA. In my role as a social worker and my previous role with CAB I have helped many people claim a whole range of welfare benefits and with DLA a good proportion used the money as income rather than to meet a disability. In many of these cases this is due to necessity because the benefits that people are supposed to live on, rather than use to meet disssability needs, are way to low in reality for people who are long term unable to work. Given this there are also many people - I have some on my current caseload - who have saved over £20,000 of DLA money. I have people with motability scheme cars who never use them for themselves but lend them to friends or family. I've had people applying for direct payments for support with a range of things including help with mobility needs when they are in reciept of both high rate care and mobility components of DLA and are just saving the DLA money. Sorry but the DLA should be being used to meet these needs not cash strapped local authorites.

I feel its obscene that some people will claim to get support for a dissability need via both direct payments and DLA and then other peolpe who need support are unable to get the help they need - perhaps because they haven't brought out their difficulties on the awful DLA form and the social care budget has been spent on people double claiming.

Given my observations I tend to think that what is needed is as follows

A substantial increase in the applicable ammounts so that all people who depend on benefits long term for their income have a realistic amount on which to live.

The phasing out of DLA with it being replaced by direct support based on assessment and need. This would mean that the money would be used in a more proportionate way and would need to be spent on relief mechanisms for the persons disability rather than used as income or just used as savings. The personalisation agenda goes some way to this but I think that a big opportunity has been missed - the money should have been given - ring fenced - to local authorites to fund a whole rand of support for disabled people.

Hope I don't get flamed for posting this but I guess it would be appropriate to say C'est le vie.

I would also like to point out that people with the types of dissability which warrants a claim for DLA are able to claim the benefit and work - the legislation is supposed to look at the level of dissabiilty and how the arrising needs can be addressed.

I know in the real world this is often not how things work, frequently because BAM's doctors do not have a clue about the legislation but there is a good appeals system via tribunals and if neccessary commissionaires - just get support if you do need to appeal a decission and attend the hearing as this tips the ballance of actually winning vastly in your favour.

Yes, but what about increased living expenses - ie utilities like electricity and water due to continence issues? I use DLA to meet those and having all the correct equipment wouldn't help with those bills.

What about all the clothing that gets wrecked? Or would that be supplied direct from SS?

I also have issues with direct supply, the continence service is supposed to do this but limits you to 3 per day and one for night despite this not being fit for purpose.

Different disabilities need the money spending differently. Surely the way DLA is structured now enables the disabled individual to control for themselves how their needs are provided for?

We don't get direct payments, respite or even emotional support tbh, I pay for that myself. This is with three disabled children.

KerryMumbles Thu 20-Jan-11 22:48:00

docfunk if you ever had an accident that, say left you completely paralyzed, would you request to be euthanized so you wouldn't be a burden to the state?

Because your private insurance has limits on it regarding how much you can claim each year. They all do.

I'm not saying DLA is perfect by the way, it does need tweaking - but the proposed PIP system intends to remove 19.5% of genuine claimants and toss them into the ether.

StartingAfresh Thu 20-Jan-11 22:48:44

buzzy, you see the reason that wouldn't work is because Riven's social services dept had assessed her needs and decided that they were being met.

We don't get DP because the social workers have said that my DH should help me more. In reality, if he did, he would lose his job. He is a university lecturer and they have put all over their reports that he doesn't help me in the holidays because he is doing his research.

FFS, his research IS his job. That is what he gets paid for and what he is allowed to take 4 weeks a year holiday from.

Our social workers have also told me that I can't complain about ds not sleeping at night because I refused to take him to the GP to get sleep drugs for him so it is my own fault (our GP is dyametrically opposed to sleep drugs in any case).

You might be very good at your job. I have no idea, but you are certainly NOT resourced enough to even begin to understand the difficulties and pressures that an individual family face, and as such should NOT be in a position to play God with their lives.

We've been told we don't qualify for DP as neither of us work. Er.... hello.... we're not exactly on holiday you know? Plus apparently as we have two school age children we have plenty of free time. Not so. DS2 is not full time despite being statutory school age, we're constantly toing and froing from the school picking up and dropping off for different sessions, they still have frequent medical appointments....

tabulahrasa Thu 20-Jan-11 23:18:52

buzzy one of the major issues I have with the proposed changes is the assessment.

How do you assess certain disabilities - like autism?

How on earth does a stranger decide what affect it has on someone's life and what their needs are better than the people involved?

Why should disabled people have to undergo repeated assessments to keep the benefit if their circumstances don't change?

How would an employer view time off work to attend these assessments?

WilliamBarton Thu 20-Jan-11 23:25:08

can't work out if Riven wants more money or time off, probably both.

I'm fine with the money we're on.... but we stand to lose it. We have just got limited respite which we are losing in eight weeks, we're dealing with that.

Losing DLA means poverty and I'm terrified. Who is with me?

tabulahrasa Thu 20-Jan-11 23:36:24

well I don't actually get any money glitter

but... I know people who it absolutely definitely will mean that they don't have an income if they lose DLA

I find it pretty terrifying that society seems not to mind though

WilliamBarton Thu 20-Jan-11 23:37:42

poverty? like not eating, no home, no clothes? try again

StartingAfresh Thu 20-Jan-11 23:39:33

Yes, living with the pigs, William, the pigs........

StartingAfresh Thu 20-Jan-11 23:40:44

Riven doesn't want money OR time off. She wants respite.

WilliamBarton Thu 20-Jan-11 23:41:35

sorry don't understand the ref to pigs if aimed at me, try again

WilliamBarton Thu 20-Jan-11 23:42:40

respite = time off caring for another, or am i missing something

tabulahrasa Thu 20-Jan-11 23:43:10

hmm

that is indeed what poverty means, why would anyone need to try again?

StartingAfresh Thu 20-Jan-11 23:43:35

It's a quote from a Knight's tale, but yes, your definition of poverty is quite the same as mine therefore I have not a clue what you are trying to contribute here.

StartingAfresh Thu 20-Jan-11 23:44:48

How is sleeping at night ever equated with time off. Have you been drinking?

WilliamBarton Thu 20-Jan-11 23:45:15

so without DLA no home? not enough to buy food and clothes? i think not

NameyMcChange Thu 20-Jan-11 23:47:17

Message deleted by Mumsnet.

StartingAfresh Thu 20-Jan-11 23:47:21

Great Will, so what's the plan then that only you seem to know about that will save so many from sleeping with the pigs?

WilliamBarton Thu 20-Jan-11 23:47:38

drink yes, drunk no. glad you can quote Chaucer however my moniker is more to do with bieng a motherless child

StartingAfresh Thu 20-Jan-11 23:48:01

In fact, even WITH DLA we are having to sell our home as it isn't enough.

WilliamBarton Thu 20-Jan-11 23:51:55

interesting language here, a twat indeed because calling people that will help, sleeping with pigs?!?

StartingAfresh Thu 20-Jan-11 23:54:51

I do believe it helped the person saying it.

FFS bugger off. The situation is bad enough as it is without bigots coming on and denying it even exists. Take yourself and your lack of imagination somewhere else and do keep inside that soft bubble or you might just find that the unthinkable puts you where some of us are now.

WilliamBarton Thu 20-Jan-11 23:55:41

sounds like and expensive house to live in

StartingAfresh Thu 20-Jan-11 23:58:51

wtf are you talking about. I haven't mentioned anything about it. We have no central heating, wooden and rotten windows that let the snow in. We are mortaged up to the eyeballs in order to pay for ds' therapy and tribunal for therapy and have the foresight to know that we will have the house reposessed when the inevitable interest rates soar.

We live in a tiny house in one of the most deprived areas on our county. You're talking out of your arse!

expatinscotland Fri 21-Jan-11 00:01:56

Don't feed it, Staying.

MissQue Fri 21-Jan-11 00:02:06

Docfunk you are an ignorant excuse for a human and haven't a fucking clue about disability. A very limited number of disabilities are picked up during ante natal scans, an extremely limited number indeed. There is no way of diagnosing most conditions before birth, and many aren't diagnosed till much later on. That's not to mention people who become disabled later in life.

My dd is severely autistic. There is NO WAY of knowing that during pregnancy, no way at all. She was diagnosed at 2.5 years, before that I had no idea, I didn't even really know what autism was. So what was I meant to do with my 2 year old???? Oh yeah, what every parent in my situation does - make the best of it, learn as much as possible, strive to give them the best, try to get the right help so that they can grow up and learn to the best of their ability. What do you suggest I should have done? Actually, don't bother answering, I don't want to know.

ThisIsANiceCage Fri 21-Jan-11 00:04:01

buzzyB that's incredible what you say about claiming multiple benefits. I've been disabled at one level or another for at least 8 years, and have never even heard of some of these (it's not like the agencies fall over themselves to inform you).

It's really odd, because I remember back in the days when I needed housing benefit, the forms asked if you were receiving certain other benefits, or even had an application pending, because these would be taken into account. So although I bet there were people who lied, once the system caught up with them they had committed actual fraud and could be dealt with.

This sounds like sometimes agencies (is this DWP vs local council?) simply don't ask what the other is providing - mad, considering the depths of questioning and humiliation we go through to fill in the medical and capacity parts of the forms.

WilliamBarton Fri 21-Jan-11 00:04:28

move then

StartingAfresh Fri 21-Jan-11 00:07:46

where to?

Bear in mind I have a disabled ds and need certain adaptations to the property to make it possible/safe.

Bear in mind I already live in a tiny place in the most deprived part of my county and my ds' statement of provision is FOR that county and not easily transferable without another tribunal which I cannot now afford even WITH DLA?

Bear in mind I have neither a TV, nor mobile phone nor even working oven to sell.

KalokiMallow Fri 21-Jan-11 00:08:44

"This sounds like sometimes agencies (is this DWP vs local council?) simply don't ask what the other is providing - mad, considering the depths of questioning and humiliation we go through to fill in the medical and capacity parts of the forms."

Hell, IB/ESA and HB don't (and in my experience wont) talk to each other. It's difficult to believe they are all part of one big system the way they are so separate.

expatinscotland Fri 21-Jan-11 00:09:23

Don't feed it, Staying.

WilliamBarton Fri 21-Jan-11 00:10:23

you own a house. homeless people in your situation are given a suitable house, go figure

ThisIsANiceCage Fri 21-Jan-11 00:13:25

Starting LOOK! LOOK OVER THERE!

<slugs WilliamBarton swiftly and silently, drags body away>

More along there, busy thread, important business, lots to do.

StartingAfresh Fri 21-Jan-11 00:14:10

off to bed - night.

Don't mind feeding the troll tbh, because it is a chance to illustrate the reality that lots of people just don't realise.

I've used the ham bone for the third night in a row for yet another 'soup' for my kids, neither of which can actually use a spoon but there you go.

But I manage because I don't suffer from mental health of depression like the majority of other careers and am lucky enough to have been born with some useful internal resources that mean I can be imaginative and strategic. But they aren't resources available to all, and even to those to whom they are, they often aren't well enough or rested enough to use them.

StartingAfresh Fri 21-Jan-11 00:15:37

I do however, suffer with spelling issues - grin but perhaps that's the lack of vitamins in my diet.

StartingAfresh Fri 21-Jan-11 00:16:12

LOL at cage

Yes, poverty.
No food.
No heat.
No roof.

Without DLA we don't get carers. Without carers we don't get Income Support. Without Income support we don't get Housing Benefit or Council Tax Benefit.

So no money then.
No way of working.
Still three disabled kids.

Poverty. That is the correct definition.

Triggles Fri 21-Jan-11 00:21:39

cage - love it lol

I hate to see a thread that could be positive fall to trolls. Do we have an "ignore" function that we can ignore certain posters?? confused If we don't, then we should...

I've never understood why people don't simply ignore the threads that they don't feel they can support. It's different on a AIBU as people are literally asking for opinions. This thread, however, is specifically for support to stop the abolition of DLA (hint for those of you who are dissenters - READ THE TITLE!! grin), so if you can't get behind that, simply don't participate in the thread. It's not rocket science...hmm

pollyP1 Fri 21-Jan-11 00:25:17

they've only been in for 6 months but isn't this already the worst government ever in this country? 2.5 million unemployed was announced yesterday- 1 million are under 25s with neither jobs nor education. They are soon to be joined by the over 1 million sacked public servants, policemen and prison officers( when more prisons closed down)and the 1 million who provide services to them, ie over 4.5 million soon. The private sector have not come up with any jobs for all these people and the banks are still not lending them any money but continue to pay themselves millions in bonuses- Golman Sachs bank announce record profits and an average wage per employee of half a million- REALLY! They have now set about demolishing the NHS- GPs cannot manage the £80,000million a year of the NHS, they can't even get the flu vaccine organised! schools have lost millions of improvements, students loose their EMA grants and now have to find at least £30,000 to pay off their educational funding.Inflation is about 5% and rising, petrol at record prices (I saw £1.33/litre today)and wages depressed or even cut. Where are we going, folks? they tell us they've voted themselves in for 5 years now, so how can we get rid of them? shock angry

buzzyB Fri 21-Jan-11 00:30:47

Glitterknickaz said

Yes, but what about increased living expenses - ie utilities like electricity and water due to continence issues? I use DLA to meet those and having all the correct equipment wouldn't help with those bills.

What about all the clothing that gets wrecked? Or would that be supplied direct from SS?

I also have issues with direct supply, the continence service is supposed to do this but limits you to 3 per day and one for night despite this not being fit for purpose.

Different disabilities need the money spending differently. Surely the way DLA is structured now enables the disabled individual to control for themselves how their needs are provided for?

We don't get direct payments, respite or even emotional support tbh, I pay for that myself. This is with three disabled children.

If your living benefits were increased this would pay for your increased utility bills, clothing and such and I'm not talking about equipment as that is the domain of the OT's. What Im talking about is an increase in the benefits required for living costs based on the applicable ammount and then talking provision of funding for dissability needs away from the benefits system and passing the money currently provided for some who need it but not to all through to disabled people proportionate to those who need it.

Sorry if this upsets you but I just don't think that - bassed on my observations - some people should be in a position where they can save their DLA payments as savings whilst other people who may have a greater need get sod all. It's clear that HMG's proposals for reform are very wide of the mark and just a shameful cost cutting excercise and I think that by increasing benefits targeted for daily living to realistic levels and then taregeting disability needs via assessment and SS that a fairer system would exist.

BTW if you do not currently get direct payments then perhaps you should as your SSD for a community care assessment - as is your right. You might just get some extra help and DP is a great way of taking control of what services can be provided (funded)though of course the money would have to be spent on assessed needs.

WilliamBarton Fri 21-Jan-11 00:35:22

some people only like to hear from other people that agree with them and some are intrested in what others have to say. if you don't like what i am saying you need to ask is it because i insulted you or because you disagre with me, btw spelling is for those who find presentation more impotant than content

WilliamBarton Fri 21-Jan-11 00:44:28

so why is the bone soup person sat typing on a computer conected to the interweb in thier own home and not filling gaps in rotten windows with a $2 gap filler gun from any diy store?

bullet234 Fri 21-Jan-11 00:48:30

Thanks for continuing to bring this to our attention Glitter.

WilliamBarton Fri 21-Jan-11 01:23:14

don't understand the Glitter thing....still loss of DLA a good thing because some will cope, the rest will find the people they care for in a care home until they can provide better

WilliamBarton Fri 21-Jan-11 01:49:50

i think i suffered your abuse and threats quite well considering

buzzyB Fri 21-Jan-11 02:19:50

StartingAfresh said

buzzy, you see the reason that wouldn't work is because Riven's social services dept had assessed her needs and decided that they were being met.

We don't get DP because the social workers have said that my DH should help me more. In reality, if he did, he would lose his job. He is a university lecturer and they have put all over their reports that he doesn't help me in the holidays because he is doing his research.

FFS, his research IS his job. That is what he gets paid for and what he is allowed to take 4 weeks a year holiday from.

Our social workers have also told me that I can't complain about ds not sleeping at night because I refused to take him to the GP to get sleep drugs for him so it is my own fault (our GP is dyametrically opposed to sleep drugs in any case).

You might be very good at your job. I have no idea, but you are certainly NOT resourced enough to even begin to understand the difficulties and pressures that an individual family face, and as such should NOT be in a position to play God with their lives.

My Reply

Yes I am aware that Riven had an assessment and probably the funding panel not the SW decided that extra respite would not be provided. The reason behind this is that social service departments have had massive funding cuts, not as I am saying their funding should be increased and the money ring fenced for providing targeted funding to meet disability needs.

The reality of this tragic governments policy is that country wide, social service departments have been forced to increase their FACS funding level - mostly to critical - as a direct result of government cutbacks. This is a massive difference to what it was only a few months ago. The result of this is that it is now much much harder for S/Ws to get support / care packages through panel. I must also say things can and probably will get worse.

In your case, it sounds as if you had a crap S/W because you have been given bad info. You can complain about whatever you want and your complaints should be listened to and acted on. Also it's not for a S/W to say how much support your husband should be providing or if you should be taking extra pain killers (which may in fact be harmful). Also the assessment of need should be just that not how much informal help you get.

If I was your SW I would be advocating for your husband to continue with his job and prima facia, support for you to cover your assessed needs so that you had the care you need - via DP & a PA or otherwise. I would also be signposting you and your husband non commissioned resources and support that may be available. As I do not know your particular case I can't comment to much on exactly what support you should be able to expect. I can only comment on what I see in my practice and that is some people are able to save their DLA whilst other needy people, sometimes with greater need are unable to get the help they need. That some people are using the DLA as income and in some of those cases because they do not have sufficent income to live on. In other cases however the DLA is used to furnish a very comfortable lifestyle, beyond what many working people are able to achieve. The reason for the discrepancy is because the DWP have moved the goal posts many time re eligability criterea. And yes some people who can walk much further than the current eligabilty critera get high rate mobility component DLA and then try to (and sometimes do claim) direct payments for transport, or high rate care component and then have a social services paid for care package.

You guys just don't seem to have the full picture. You are reactive based on your own experience and don't want to even consider any form of change. Is the current system then utopia. I know it is far from this

BTW I have also been in a carers shoes whilst careing for Mum who had polyrheumatica arthritis and later contracted breast cancer (perhaps due to the high dose of steroids given to her as a part of the 'treatment' for the RA). The breast cancer eventually killed her over a period of ten years, the last three in lots of distress. As such I know full well the stresses and difficulties that disabled people and their carers face on a day to day basis. I know that carers benefits are woefull and for many the welfare benefits designed for people to live on are just plainly inadequate. However, I also have a perspective that perhaps you do not, a perspective from the intricities of funding care and support, fro those in genuine need and those who are playing games. Forgive me than if I ask you not to play holyer than thou, I may well have more understanding than you and certainly more than you give me credit for.

And I do not, do not, do not play god with peoples lives. What I do do in my practice is help people improve their quality of life by helping them access care and support services and resources, by providing theraputic interventions such as CBT, brief therapy and family therapy, and by advocating for both carers and service users in the face of a mass of bureacracy and unsurmontable amounts of red tape.

I am not nieve enough to think that any ideas presented here will ever be taken up as policy but I do think that if people on this site cleared the red mist from their minds they may see that for most service users and their carers what I have presented as an idea would not only be benificial, perhaps even preferable to what is currently on offer but would also be much fairer.

I must also say that the way that people on this site jump all over any idea that doesn't exactly match their own agenda does themselves and mumsnet as a whole a grave disservice and reduces the credibilty of the site as a venue of reasonable informed debate and discussion.

buzzyB Fri 21-Jan-11 02:37:29

Glitterknickaz

Er...... Hello........
Don't know who tolod you you need to be in employment to get direct payment but they were at best misguided.

Perhaps you are confusing direct payment which is from the DWP and direct payments which are from social services aka childrens services / adult and community services (or whatever they're called in your local authority area.

FYI

Direct payments are a means of having cash to pay for an assessed need. The service user (or carer if payment is for services for them such as respite care as amy have been the case for Riven) Generally any care or support provided via SS can be provided via a directly funded package of care or can be provided via a pot of money which must be spent on meeting addressed needs. This is designed to give people greater choice over how needs are met.

Some people like DP other don't - whatever floats your boat.

buzzyB Fri 21-Jan-11 03:13:13

tabulahrasa said

buzzy one of the major issues I have with the proposed changes is the assessment.

How do you assess certain disabilities - like autism?

How on earth does a stranger decide what affect it has on someone's life and what their needs are better than the people involved?

Why should disabled people have to undergo repeated assessments to keep the benefit if their circumstances don't change?

How would an employer view time off work to attend these assessments?

Reply

Assessing things such as an ASD / LD is in fact a process that happens over a period of time, not on one specific meeting. It would be best assessed by using a team approach but is primarily assessed by a psychiatrist and a diagnosis is given usually in childhood. MH is different as this can be assessed in a mental health act assessment which is a one of assessment prior to possible detention.

Good practice dictates that carers should be an intregal part for forming all these type of diagnosis and itn is a requirement with a MHA assessment. As such a stranger is not making the decisions you suggest in the way you indicate but is one of a group of people making the assessment - including family members.

Dissabled peole do not have to undergo repeat assessments to keep service provision - they can be offered assessment but do not have to accept it. What has to take place is a periodic review of how any services provided are meeting assessed needs - just in case things have changed. As you will be aware the world is not full of honest people.

Currently many ssd's are re assessing their service users. This is a direct result of the change to FACS criterea and the need to reduce spending due to reduced budgets
Might I also respectfully direct you to a google of the personalisation agenda.

Don't let the ConDems con (no pun intended) you, the extra £'s announced for respite are totally inadequate and are designed to mask over in reductions to SSD's budgets.

Final point, some employers are very accomodating, some are very much less so. What happens in many cases however is when time cannot be taken of work for an assessment or a review, the S/W will do the review after work - I do this lots - and then try and claim the time back (with varying degrees of success) so please guys, don't abuse this.

Hossylass Fri 21-Jan-11 03:34:04

Firstly thank you for all your comments and support.

I was the foster mother of a disabled child, and I am now disabled myself, but still have hopes of fostering again.
Sadly I cannot have children of my own.

The changes to DLA are laid out in a government proposal, again the proposal is not being given the 12 weeks lead time it should get and finishes on the 14th of February (which must be someone's idea of a sick joke).

There is something that you can do, if you feel that you wish to, and that is be a surrogate protestor, or accompay a disabled protestor to a protest.
By the very nature of disability we dont anticipate aggression from the protestors, though I cannot speak for the police.

If you wish to do this there are several sites that would help you - The Broken of Britain is one of them, and it links to other sites.
Obviously signing the petition would help too.

I am a bit overwhelmed by your sheer emotion, and grateful. For many years now disabled people have been vilified by the press and government. It is cheering indeed to read that society does not view us as the media would like. Thank you, a thousand times.

Regarding the consultation, it has a forward by Maria Miller.
Below is the forward, with my responses, which may answer some of your queries.
Please excuse me if the formatting goes astray, I haven't posted here before so I dont know what you will get!

Response to;
Disability Living Allowance reform – Ministerial foreword

The Coalition Government is committed to helping disabled people to exercise choice and control over their lives. Disability Living Allowance (DLA) helps us to deliver on this commitment.

So why change it?

We have been absolutely clear that our welfare reform plans are designed to protect people in the most vulnerable situations, including disabled people. We are committed to a sustainable and fair system that allows people to work when they can and provides unconditional support to those who are unable to work.

^So DLA is an "enabling" benefit. It enables people to pay for the additional costs of disability, whether that is for care or mobility. It "enables" social interaction, and "enables" the opportunity to work. For many it also fills the gap left by inadequate social service provision, and allows for flexible care to be provided for those with fluctuating conditions.
I would be hesitant to describe the support as unconditional. The criteria for DLA are the conditions, and when someone receives an award it does not define explicitly what criteria are being applied, which is confusing if you have multiple conditions.^

As we move towards legislating for and implementing major reform through Universal Credit and our flagship Work Programme, I believe it is also time to bring disability benefits into the 21st Century.
Universal Credit is a tapered benefit. It is quite clear how the tappering effect will work.

DLA needs a similar tapering effect, by giving more levels of care and mobility it will better represent not only the level of disability, its costs and its implications, but also allowing for people to declare much more easily any improvement or degeneration in their condition.

We are steadfast in our support for the principles of DLA, as a non-means-tested cash benefit contributing to the extra costs incurred by disabled people. However, we need to ensure that the benefit reflects the needs of disabled people today, rather than in the 1990s.

^I am unsure how the world has changed significantly in the last 15 years. There has been very little legislation to effect change, and societal attitudes to disability have not improved, or been encouraged to improve.
Disabled people still have to resort to challenging disablist behaviours privately, on their own, with very little legislation to back them up.^

It is time that we had a disability benefit which is easier for individuals to understand and provides clear criteria and consistent awards.

^Increasing the levels of DLA will better describe the affects of disability, and therefore ensure that the awards better reflect the needs and expenses of disability. This will ensure that awards are more consistent.
Clarification of criteria, and making the criteria for an award available to the claiment is a simple clerical exercise.^

This is why I want to replace DLA with a new benefit – Personal Independence Payment.

What is "why"? There is no evidence that DLA needs replacing. You have given no evidence that DLA is not fit for purpose.

This is our opportunity to improve the support for disabled people and better enable them to lead full, active and independent lives.

^A higher level of differentiation, and more levels of payment will allow for real savings, and better reflect the needs of disabled people.
No two disabled people have the same condition, with the same results, the same needs, the same desires, the same opportunities.
If DLA has a fault it is that it is not structured in a way that reflects enough the differences disabled people experience, and is not flexible enough to cope with these differences.^

Personal Independence Payment will maintain the key principles of DLA, providing cash support to help overcome the barriers which prevent disabled people from participating fully in everyday life, but it will be delivered in a fairer, more consistent and sustainable manner.

^There are three main barriers.

- Society. It will not change unless there is enforced change, brought about by legislation. Not just access, but employment and hate crime. Disabled people are oppressed by society, which increases their disability, i.e. not only may they struggle to do something, but society wont help them and often actively hinders them. This is two struggles, not just one.

- Financial. Many people who are disabled are in the lowest financial bracket. They often have to self fund adaptations, and care, and the provision of aids. Due to the postcode lottery of care many people use almost all their benefits paying for help, leaving them on the same level of income as a person on Job Seekers Allowance. JSA is however meant to be a short term benefit at subsistance level, yet many disabled people are left with this subsistance level of income every week for life. People on JSA have options, people with disabilities may not have these options. Not every disabled person has the type of disability that allows work, many have pain, illness, fatigue that prevent physical and cognitive work. There are very few jobs that dont need movement or thinking.

- Medical. Many people with disabilities do not simply have physical disabilities of deaf, blind, amputee, spinal failure, etc. Many have conditions that are primarily disabling, but also involve pain, fatigue, illness etc. Some people are actually not well enough for work, and it is their illness that disables them the most. These people often do not have an involvement in society, they do not (because they cannot) involve themselves in a social life, a religous life, in education. Their disabling condition prevents them from "participating fully in everyday life".
You are suggesting that ALL disabled people can be enabled to participate "fully in everyday life", this is a total fallacy.
For many people participation may be 'only leaving the house when they actually are well enough' and when they have the correct support structure in place, such as an assistant, a wheelchair, a wheelchair accessible vehicle, the finances to pay for all these things, and the strength and energy to gain some pleasure or benefit from the experience.^

It is only right that support should be targeted at those disabled people who face the greatest challenges to leading independent lives.

^Why is this the only solution? All disabled people require some level of assistance, otherwise they dont fulfill the criteria of being disabled, that is having a significant impact on ordinary day to day activities.
Those who face the greatest challenges already have the greatest support, in the main. It is those who need additional support, care packages, ILF, attendance, supervision, whether that is for the majority of the time down to minimal time, that face the greatest challenges of juggling what is available with what they need.
This is especially pertinent when many disabled people do not actually get any additional help, even though their disability is recognised as needing the highest level of care. Again this is due to a postcode lottery of care, and the inflexibility of social care packages.^

This reform will enable that support, along with a clearer, more straightforward assessment process.

^There is already a considerable amount of assessment for most disabled people already, performed by GP's, specialists, consultants, social workers and charities.
This should be considered an adequate, and professional, assessment.
Further assessment will increase the costs of implementing a new benefit unnecessarily.^

Personal Independence Payment will also be a more dynamic benefit – it will take account of changes in individual circumstances and the impact of disabilities, as well as wider changes in society, such as social attitudes and equality legislation.

^PIP will not be a more dynamic benefit. It will be an increasingly static benefit as the differences between the levels proposed will be too extreme. People will not wish to declare an improvement in their condition, or their living experiences if it then means a huge leap in finances.
The levels should better reflect the amount of care and mobility a person needs, not attempt to reduce the levels and distort the reality. You cannot need full time care one day, and then feel you are coping better and suddenly find that you can't pay for the level of care that you need because it falls between the levels.^

Just as we are committed to providing unconditional support to those who are unable to work, we know that work is the best form of welfare for those who are able to do so.

^Work is not the best form of welfare for those available to do so. You are refering to one report that states that work is good for certain conditions.
Given the fact that the assessment to judge who is "fit for work" by Atos (the ESA WCA) is described as "fundamentally flawed" and "not fit for purpose", I have grave concerns that people will be assessed by a similar "flawed" scheme.^

That’s why I want as many disabled people as possible to benefit from employment – it is not acceptable for anyone to be trapped in a cycle of dependency.

^Disabled People are not trapped in a cycle of dependancy.
Disabled people are trapped by the lack of legislation to force employers to accept them as equal in intellect and skills.
Employers are further stymied regarding employing disabled people by the re-aligning of Access to Work.

Disabled people are also trapped by the attitudes of society. This is a society that in 2011 is less welcoming, empathetic, flexible and caring regarding disabilities, in the main due to the media representation that most disabled people are workshy and scroungers and frauds.
Most disabled people are too ill to work, or their condition would deteriorate because of work. This does not make them workshy.
Many disabled people have paid National Insurance, and are not scroungers. They receive benefits to pay for the additional costs of their disability or disabling condition.
Almost all recipients of DLA are genuine, have been assessed as genuine, have produced huge amounts of evidence to indicate that they are genuine. DWP statistics show that less than 0.5% of DLA recipients are fraudulent.

I have yet to see this Government, or yourself, defend disabled people against this propaganda, hence you are complicit in allowing this propoganda to percolate throughout society. Hence society is not empathetic towards disabled people, and therefore unlikely to volunteer to be more accepting of them, employ them, or facilitate disabled people being part of "their" society.^

By giving people the right level of support through Personal Independence Payment, I hope that many more disabled people will be able to work and enjoy the advantages that an active working life can bring.

^I am unsure how you come to the conclusion that reducing the amount and accessiblitity of a benefit will be enabling. It will further disable people, who will have less care, and therefore be less able to compete in the job market.
Reducing the levels of payment will reduce the chances that they are getting the "right level of support".
Disabled people will not be able to work because the name of their benefit has changed. Changing the attitude of society, protecting and promoting disabled people, enabling them with very flexible working, making benefits dynamic, not only in their structure but also in their delivery, and an acceptance that disabled people have additional needs may empower some disabled people to work.
Many however will still be too ill or too disabled by their condition to attempt work.^

This is why I believe the time is right to reform DLA. We need to create a new, more active and enabling benefit of which British people can be proud – a benefit fit for the 21st Century.

^In my opinion this is totally the wrong time to reform DLA. Society is not accepting of disabled people, in the main due to media propaganda, though unenforced legislation, insufficient legislation, encouragement of hate crime all play their part. Additionally cuts to Access to Work, Independant Living Fund, housing benefit, social care funding will actually decrease opportunities for disabled people to find work.

You cannot reform a benefit by redefining disability. You cannot employ private enterprise to reassess disability and expect that disabled people, in fact all people will be convinced that this type of assessment is anything like "fit for purpose".

We do need to create a new, more active and enabling benefit of which British people can be proud – a benefit fit for the 21st Century. But I suggest that this new benefit recognises MORE levels of need.

If there were 5 levels of care, based on the actual hours of care needed, then as people gradually improve, or degenerate, the care levels available would better reflect this. People would then be happier and more confident to try to do more, confident in the knowledge that there is a level that is representative of their needs.

Consider the fraud statistic of 0.5%. Many of the people found guilty of fraud actually had, at the time of claiming, the conditions they claimed. Subsequently they have improved in health, developed coping strategies, found more suitable accomodation and purchased aids and adaptations. The DLA has empowered their recovery.
However they did not have available to them a benefit that reflected their recovery. DLA is not dynamic enough to do this. It is very much all or nothing.
And the proposed levels of PIP emphasise this even more.

Consider the mobility component of DLA. There are two levels. The lower level is primarily for those requiring accompanying. The higher level is primarily for those who are virtually unable to walk. Therefore you cannot actually improve without losing all the mobility component, as these two criteria are not connected.
For Mobility there should be three levels, each being available to all disabilities. Hence it would reflect the actual real amount of assistance that is required, not be targetted at specific conditions. Many people on the higher rate of mobility would be better served by a lower rate, arbitrarily £20, £35 and £50, which would allow those at the lower end to have attendance for essential mobility, the middle rate allowing for some funding of vehicles or mobility aids, and the highest rate being a considerable contribution to those who need both attendance and mobility aids.

Similarly the Care component could be based on five levels, £20, £35, £50, £65 and £80. Although this would allow for very little bought in care, it would allow for people to have their basic needs met of being able to eat, drink, toilet, wash, and take medication. As you can see, the top level would only allow for a maximum of 10 hours help a week - but this ten hours may be the difference between a person living and dying.
Greater flexibility and more levels that truely represent the many differing levels of need are what is required.

This approach is not more complex - it is far more simplistic, based on how much help and how much assistance is required for ordinary day-to-day living, which can be calculated in hours and converted to an appropriate level.
Ordinary day-to-day living includes eating healthily, taking medication, having social interaction, attending appointments, dressing,bathing, toileting, being safe both in the home and outside it. Very ordinary things to most people, but to many disabled people these simple activities are what their lives are centred around, they are the basic needs of all human beings, and for most that is what their DLA is spent on.
DLA is a flexible way of accesing help to satify these most basic of human needs. Social care is another way. However Social Care varies widely across the UK.
I receive no social care, as my social service adult care department cannot afford it. Others, with similar conditions get 4 hours care. Some get 20 hours care. Some get more, with the addition of ILF.
Some contribute towards this care from their DLA care component. Some give almost all their care component. Some give nothing. Some have domestic duties paid for, some have social activities paid for. Some people have all their DLA, Income support and incapacity benefit intact and get huge amounts of care.
I, and many others like me, live on a subsistance amount because we have to pay for all our care.
This is something I hope you will consider when formulating the reform of DLA. Neither society nor Social Care will be there to fulfill these essential needs, regardless of how much we wish it to.^

Thank you for those who read this far

And a bigger thank you for making this particular disabled person feel a little less alone.

ItsGraceAgain Fri 21-Jan-11 03:55:48

Until a few years ago, the only people I knew on DLA were cheats. I now realise how inevitable that is - the majority of disabled people are indoors a lot, are unlikely to be frantically socialising down the pub and often have some degree of social anxiety. My odd-job man, however, with his fake bad back and higher-rate mobility, was an outgoing sort of chap.

Then a relative of mine had to enter residential care. She got DLA; it was the first time anybody had explained to me what it is and what it's for. A year ago, I applied myself. I was awarded LR on appeal. Both my relative and I had disabling psychological conditions and I can't describe how disturbing the application procedure is. The 'points' are almost all to do with physical disabilities. In both our cases, the few questions that relate to mental conditions were assessed purely according to their physical impact (we both needed support to go anywhere, meet people, etc.) Doing my own application, I found the process of dwelling on every physical effect of my anxiety incredibly upsetting and felt suicidal for several WEEKS afterwards.

I'm grateful for our benefits system - I'd be dead without it. But it has become more and more 'wrong' over the years. I paid a huge amount into the pot during my working years, never resenting it because I believed it provided a network of support for those who couldn't cope. Of course some people took the piss; that's true of any financial structure. If you run a shop, you have to factor in the cost of pilfering; you don't treat every customer as a thief.

But that's what's happened with the benefits system now. The whole thing is based on the assumption that every applicant is a thief. It's suspicious, accusatory and the rule of thumb is "They always say no first time." That is, the application procedure is humiliating and assessors treat applicants as liars. Sick people don't have the resources to drive a truck through this sort of thing: basically, if you're too fragile to cope with it, Atos and the Government will decide you were lying.

It's a despicable approach. I know of a wheelchair-bound agoraphobic who was refused mobility allowance on appeal ... because, as she's too scared to go out, she doesn't go out so has no need for support! To get to the tribunal, she had 3 care workers with her all day and was heavily medicated. It was the first time she'd left her house in four years.

The new protocol will make it even harder for claimants with psychological disabilities to get help: that is, virtually impossible. At the same time it narrows the field of point-scoring disablements, meaning that conditions which Atos & the Government haven't listed will fall outside the remit. All very handy for those who've perfected the art of the fake broken back, who have the emotional buoyancy to get them through the procedure. But worse than no help for the weak, the frail and the genuinely needy.

Where are those people suppposed to find the help they need to become contributing members of society? If your granny can't get a scooter when her legs go, how will she do her shopping? If your daughter develops anorexia, how will she learn to rebuild her self-esteem?

I'm really happy Riven's made the national news, but despondent about whether she'll be able to make any difference. Six hours sleep a week! How would you cope?

ItsGraceAgain Fri 21-Jan-11 03:56:24

Sorry for the essay. As you probably guessed, I could have gone for PAGES blush

buzzyB Fri 21-Jan-11 04:47:20

ThisIsANiceCage said

buzzyB that's incredible what you say about claiming multiple benefits. I've been disabled at one level or another for at least 8 years, and have never even heard of some of these (it's not like the agencies fall over themselves to inform you).

It's really odd, because I remember back in the days when I needed housing benefit, the forms asked if you were receiving certain other benefits, or even had an application pending, because these would be taken into account. So although I bet there were people who lied, once the system caught up with them they had committed actual fraud and could be dealt with.

This sounds like sometimes agencies (is this DWP vs local council?) simply don't ask what the other is providing - mad, considering the depths of questioning and humiliation we go through to fill in the medical and capacity parts of the forms.

Reply

ThisIsANIceCage.

Sorry to hear about you having to endure you disabilities for the past 8 years. I am making some assumptions here so please forgive me if I am out of line with this.

I'm guessing that you live on welfare benefits. Possibly some DLA and perahps some other benefits. These benefits are from the DWP. Looking at DLA, this is a benefit targeted at specific needs, claimed via a complex form (you can get a paper version by phoning 08457 123456 or there are pdf versions and an online version on directgov, I prefer the printed version)

DLA is what is termed a gateway benefit - getting DLA adds specific amounts to the claimants applicable ammount which is what 'the law' i.e. the government says somebody needs to live. These benefits are claimed from the DWP and frequently paid via a process called direct payment. Dont fall into the trap of thinking that direct payment and direct payments (with an Sat the end) are the same thing, they aren't.

Direct payments are payments in leau of services from what used to be called social services. What used to happen is that a social worker would make an assessment of how a person was affected by their disabilities. A care plan would then be drafted and support arranged and paid for directly by the soical worker / SSD.

When direct payments were introduced this meant that people had the choice of the above or choosing to arrange for the support to meet the assessed needs for themselves. The ssd would the give them a pot of money (usually paid monthly) to pay for support - this was called direct payments.

Using Direct Payments is very good when it works but it does not work for everybody.

You are right when you say that agencies such as the SSD and DWP do not talk to each other. Their is legislation which prevents us doing this (Data Protection Act) and it is purgatory trying to get even very basic details from the DWP without written consent and even when this has been lodged with them one section of the DWP may have a copy of this and be happy to talk whilst another section may not have the consent lodged and therfore refuse to talk. It's madness, very frustrating and a huge waste of time. At worst this inabilty to talk has been a major factor in cases like baby peter and victoria climbie.

I could go on about benefits and DP but if you do not get these you can ask for an assessment under section 47 of the NHS & community care act. You have the right to assessment. The social worker (or support worker) should be able to give you more info and help you claim benefits. If you meet the eligablity criterea for services from social services (as was) they will advise you about direct payments on other options open to you.

Thing is re fraud, claiming DLA to meet the identified needs does not mean that you have to spend the money that way. It is legitimate to use the money as income. Me argument in this case is that people should be getting sufficient via other benefits so that they don't need to use DLA in this way. The DLA could be targeted then in such a way that it specifically goes towards relieving the effects of the persons dissability. People who don't need the money wouldn't get it. This would then leave more money to pay for support for others who don't currently get support or increased support for people who do not get enough support.

I think that this is a fairer way of ensuring that people get the support they need and also enough money to live on and extra money for increased utility bills as a result of dissability could be included in the DWP benefits. I then think that the money from DLA could the be added to the SSD budget and ring fenced for paying for services inc direct payments.

This method of delivery would have allowed people like Raven get the Respite that was needed but reduced or no money for those who just want to put the DLA in the bank and don't use it for support.

I hope this is helpful for you and also explains my position.

By way of a caveat are people on here aware that this crazy government are also abolishing ILF funding. Another way of depriving some vulnerable people from getting the services they need.

Karmalady Fri 21-Jan-11 04:52:03

There are going to be protests against this on 24th Janaury:

http://benefitclaimantsfightback.wordpress.com/

I'm disabled, cannot work (although I always did work for 24 years!) and the ESA migration and the cuts/changes they want to make to DLA (coupled with the way they are doing it, using ATOS and an assessment programme deemed unfit for purpose - we have ATOS employed chiropodists, and others unqualified to do medical assessments, doing the tests, and often overuling a consultants opinion!), is a real nightmare in the making.

Great to see MumsNet taking up cudgels to help fight this government who, quite honestly, don't give a toss about anyone disabled - adult or child.

Please, if you have the time, Email your MP to express your views on it all.

Thanks.

Lin

Hossylass Fri 21-Jan-11 05:24:23

This is from Rhydian, writer for the Guardian, and originally posted on the BBC Ouch site;

The Broken of Britain is busy fighting DLA reform, but as an user-led grassroots organization we need your help.

Firstly, sign the petition to stop DLA reform: http://www.petitiononline.co.uk/petition/petition- the-minister-for-disabled-people-to-recall-the-pub lic-consultation-on-dla-reform/569/0aa4fc2026635b3 4c32b57a1e644d746

Use our campaign resource to write to MPs and Ministers: http://thebrokenofbritain.blogspot.com/2010/12/sto p-dla-reform-campaign-resource.html

Let supportive representatives and friends know how they can help:
http://thebrokenofbritain.blogspot.com/2010/12/say -no-to-dla-cuts-how-to-take-part.html

I hope these links help, having letter templates for MP's is a real time saver.

Sorry if I am bugging you all

Hossylass Fri 21-Jan-11 05:41:57

BuzzyB

Problem with your scenario is two fold;

1) There is no national standard for assigning levels of care (hence the huge differences around the country.)
In some parts of the country 98% of DLA care is taken in return for DP's or care packages.
In other parts no amount is taken.
So people with the same income and care packages contribute totally differing amounts and thus have totally different disposable income.

2) For fluctuating conditions then the save and spend option is the only one that you can use your DLA for, as fluctuating conditions, regardless of severity, are rarely catered for by social services, hence no DP's either.
Hence I save in summer to spend on care in winter.
I am substantial need, not super-hyper-aged-critical, which is apparently what you need to be in my area !
So I pay all my care out of my DLA and IB and IS, hence no mobility car. I live on a subsistance income after I have paid for my care. And that is not what it was intended for either

tonyt Fri 21-Jan-11 06:09:02

Total support here.. Have got to stop these morons and there stupid cuts

goingroundthebend4 Fri 21-Jan-11 06:41:06

Ds was asssesd as qualifying as a disable child meets every one of their critera but because i cope we are offered nothing bar load of judgey pants comments when ever TAC meeting ( mind Ot,physio,schoo,paed people all know my son say he is doing great yet sw can sit there and make comments without offering pratical help

goingroundthebend4 Fri 21-Jan-11 06:42:58

My sons dla is currently helping me fund the cost of attending a signing course 7 hours in total on public transport for 25 minute lesson .Yet I was told well you get extra money what do you expect to do

tabulahrasa Fri 21-Jan-11 07:52:27

buzzy - I was talking about the assessment process outlined in the consultation for the proposed PIP, not current access to provision

I know very well how the diagnosis for autism works, lol - which is why I also know that it will be almost impossible to assess how it affects somebody's life in a meeting with a DWP 'objective assessor'

the application process they're wanting to introduce is to assess 'key activities' that they deem essential to have a fulfilling life, then regular re-assessment to check that the person's claiming hasn't had a change in their ability to perform these activities

MmeLindt Fri 21-Jan-11 07:57:58

Some great posts and interesting reading on the thread.

Grace made a very good point about benefit claimants being treated as if they were scroungers.

My Dad gets DLA (I have no idea what rate) and has a mobility car. He has COPD and finds it difficult to get around. Having the car means that they can get to the supermarket, or have a wander around town without him having to rely on buses. He gets very breathless if he has to walk distances, or if he has to climb stair, particularly if it is windy.

I am fully aware that he is lucky that he receives DLA for this condition, as in other areas of the country he might not.

He told me a bit about the claims process, and it is indeed very rigorous and not easy to cheat.

People who cheat the system are criminals. Those who need the assistance are not.

Buzzy
You do know that the rate of fraud for DLA is under 1% - much lower than any other benefit? Presumably, because of your job, you are being exposed to many more than you would normally meet in every day life.

Guardian comment today

and here

buzzy I have not been told that DP are for those in employment, I've been told I CANNOT have them because neither me or DH work as our care responsibilities are too onerous. SS see this as us having all the time in the world which is quite frankly laughable. Nice twist though.

We've also been assessed three times in the last five years by SS. They've rejected us for help every single time because on their assessments they have found the children well cared for, not at risk and that we are 'coping' by their definition. This is despite two separate health professionals and a headteacher insisting we needed the help, and yes we do, they just continually reject us.

I still think William Barton is a complete troll quite frankly, as he advocates care places for each child at a cost of £1,500 a week per child when their weekly DLA is around £50. Yes, let's screw the economy completely shall we?

MmeLindt Fri 21-Jan-11 08:36:01

<throws biscuits at the trolls>

Ignore them, they are taking up our time which can be put to better use.

WilliamBarton Fri 21-Jan-11 08:41:58

compring £1500 to the 50 or so quid that is available to those who need it is wrong in that the £1500 pays for everything except the contact with friends and family. some will cope without DLA some will not. i simply cannot believe that Riven survives on six hours sleep, i tried it once as training for the armed forces and it only works for a few weeks then the body takes over.

btw sparkly nick naks who came up with the word 'onerous' you or them?

That would be me. You do not live my life so do not pretend to know my situation.

LaWeaselMys Fri 21-Jan-11 08:55:08

Just popping in to see how it's going - Mme Lindt those articles are great.

Who else wants to give Amelia Gentleman a massive hug? She has done fantastic work.

Hossylass Fri 21-Jan-11 08:58:44

WilliamBarton, what did the forces do to be forced to accept such as weak and pathetic specimen as you?

Thatcher and Churchill ran the country on very small amounts of sleep.

But then they were made of sterner stuff than you, as is Riven.

I'm surprised your mother didn't put such a wet blanket as you into care.
Guess that a mothers love is unconditional - even your's.

sixteencandles Fri 21-Jan-11 09:02:24

Just a reminder - do not feed the trolls!

Keep up the good, good work everyone.

expatinscotland Fri 21-Jan-11 09:13:58

'still loss of DLA a good thing because some will cope, the rest will find the people they care for in a care home until they can provide better'

Do you have any idea how much those care homes cost? A hell of a lot more than paying DLA to that very same person.

I did make that point, expat. The poster in question then found it amusing to mess with my username and imply that our family doesn't need the money we get.

No, cos we don't need a home, food and heating do we?

Rhydian Fri 21-Jan-11 09:36:48

The Broken of Britain thebrokenofbritain.blogspot.com/ is an internet-based disability rights group, run by and for disabled people, We are running a campaign against the cuts/reforms to DLA thebrokenofbritain.blogspot.com/2011/01/dla-reform -tbofb-one-page-summary.html that has been covered in The Guardian, Community Care and many other blogs. We'd love the support of Mumsnet. You could

a) sign the petition against DLA reform www.petitiononline.co.uk/petition/petition-the-min ister-for-disabled-people-to-recall-the-public-con sultation-on-dla-reform/569/0aa4fc2026635b34c32b57 a1e644d746
b) write yo your MP, the Minister for Disabled People and the PM thebrokenofbritain.blogspot.com/2010/12/stop-dla-r eform-campaign-resource.html
c) if you live in Wales, ask your AM to support the Statement of Opinion tabled in the Assembly thebrokenofbritain.blogspot.com/2011/01/letter-to- ams.html
d)help to shape The Broken of Britain's submission to the consultation on DLA reform thebrokenofbritain.blogspot.com/2011/01/submission -on-dla-reform-second-draft.html

These are just some ideas - there are other actions and more are planned!

staffielover Fri 21-Jan-11 10:03:31

I was awarded DLA "for life" in 2008 after a strict medical by then then DSS doctor and supported by letters from my GP and hospital specialists stating that my degenerative condition was incurable and that I was unable to live a normal life due to my disabilities.
I`ll now have to take a work capability assessment(despite being told I was exempt back in 2006) and take regular even harsher regular medicals to see if they can ever cut orstop my DLA payments!
My condition is called Ankylosing spondylitis (A S)which is a painful arthritic disease similar to rheumatoid arthritis(ie,caused by an over active immune system)which affects mainly the spine causing chronic pain and stiffness, caused by the joints fusing together with brittle bone tissue ,,but can also affect other periphial joints.
Crohns disease (inflammation in the bowel) and Iritis(eye inflammation) are also associated with AS.
I suffer bouts of Crohns and iritis flare ups which result in me being unable to go out or drive and flare ups in my A S which means even more pain and discomfort than usual.
All of these conditions have resulted in me getting depression,which has got worse since Osbornes emergency budget speech!

In his pre election speeches Cameron promise to protect DLA and the most vulnerable people in society from the cuts,yet only weeks after the coaltion was formed,smug toff Osborne was saying that he inteneded to retest existing claimants of DLA to cut the claimants by 20% andalso bring in a tougher new test for new claimants.
DWP says that fraudulent claims are around 0.6%,so that makes the other 19.4% who have lost their DLA unfairly treated!

I worked as a self employed painter and decorator for 23 years after I was diagnosed with AS,I was self employed because nobody would employ me direct because I had to have regular days of if I was feeling unwell.
I paid my taxes and national insurance from aged 16 to 39 when i could no longer bear to work because of the pain,yet Iain Duncan Smith calls me a workless person languishing on taxpayers handouts!!!
Needless to say I`m a man and not a mother,but I thank mumsnet for bringing the DLA cuts to the publics attention.
Us disabled people cannot march and protest as able bodied people can,hence why nobody has heard about the DLA prposals and why 1000s of us are deeply worried about our futures.
Best regards,Pete A.

staffielover Fri 21-Jan-11 10:12:17

sarah293 Sun 16-Jan-11 19:48:26
There's going to be marches. I assume they will be on the websites posted already.

Oh yes, the adaptations thing. If you use a powerchair magically you're no longer mobility impaired. Cos all buses/buildings/the country is accessible right....
WRONG

And they don`t even start to think that powered chairs\scooters etc cost £100s and cost money to maintain and repair.
get the country back on it`s feet?they couldn`t run a binge drinking session in a brewery!

Maria Miller minister for the disabled.
I`d prefer to call her minister "against" the disabled ,and in my view, she knows as much about disability problems as I know about open heart surgery!

Mouseface Fri 21-Jan-11 10:22:37

<wanders back in, pulls up a chair, rests crutches against it and administers tube feed for DS>

Morning.

Some of the posts on here are fantastic, thank you for the links.

I have e-mailed my local MP and the LA to ask where their allocated money will be going.

<ignores the urge to dispose of the bridge dweller>

Cressa Fri 21-Jan-11 11:04:14

Can I just take the time to give my heartfelt thanks to all those on Mumsnet who have taken an interest or action over the crisis currently facing all the disabled and longterm sick.

I don't want to hijack your site but we have so far been given no other voice in the media, despite the long and hard efforts of many.

I will confess - I am not a Mum. It was the biggest wish of my life that I would be. However, I was in an accident when younger, that left me with so many problems, I felt I could not bring children into the world when I could barely look after myself without help.

I had to get into debt simply to survive and pay for care in the early years. I then spent years scrimping by to pay the money I had borrowed back to the banks as I felt it a moral duty. I could have gone bankrupt and let the banks bear the burden and now I wish I had!

I think the public has been grossly misled by this government and the previous. A concerted campaign in the media has left the public to think that everyone on benefits is a scrounger - this was deliberate, so that when the unthinkable assault on the sick and disabled began, the public would not complain. They haven't. So far.

I have every sympathy for Riven and hope she will get the help she needs. But I don't want anyone to be under any illusion that this case is unique. A photo op with Cameron must not hide the reality of what is really going on.

Disabled people have been living in fear since the emergency budget in June and the Spending Review in October - we have even been blamed by IDS for being the cause of the financial mess the country is in!

The public do not know that the current changeover from Incapacity Benefit to ESA will begin for existing claimants in March. This means being subjected to a computerised medical by ATOS, paid millions by the government to do their bidding,where people are being deliberately found fit for work when they are seriously ill and disabled.

It is practically impossible to get put in the ESA "Support" group, even if previously deemed as unfit for work for life under the old system. GP letters, Consultant reports are ignored.

The government says it wants to get disabled people into work, yet the test has no practical application for day to day ability in a work environment. It was labelled as causing misery to thousands by declaring people fit for work when they were not by Danny Alexander, only weeks before the election.

Most of us are struggling just to get through the day. This has been made so much harder by the constant harrassement in the press. There has been a sharp increase in the numbers of disabled people reporting they have been verbally or even physically abused in the street. Many say they are now too afraid to leave their homes for fear of this or that someone who "can't see anything wrong" with you, will follow the governments instructions to report them to the DSS. Many disabilities are hidden. Going out one day for an hour may be at the cost of extreme pain, exhaustion and several days having to recover. This is the bit no one sees. The days and nights alone of pain and tears - and fear.

Many also say they are storing up their medication as a final solution if all these changes go through. I know this is true - I am one of them.

The purpose is not to get disabled people into work, there are no jobs and if we could work we would. We are not all wasters with no education milking the system. Many members of the public seem to think "Shameless" is a documentary.

The only purpose is to turf everyone of Incapacity Benefit onto Jobseekers Allowance, to save the extra few pounds a week meant to cover the additional costs of illness.

Now they are to get rid of DLA, using the same test, which ignores anything you actually say or any evidence from specialists. It is to be replaced with PIP. The expressed intention is to remove 20% of claimants. Yet the DWP own figures say that only 0.5% of claims are fraudulent. It is already an extremely hard benefit to get, requiring medicals and tons of supporting evidence and usually an appeal to a tribunal.

This benefit is available to those with a disability who can work to help with additional costs of adaptations, transport etc. Many who lose their DLA will also lose their jobs. People are already losing their homes.

My plea to Mumsnet is please do not fall for the politician smile and blandishments over Riven. How can there be "sympathy" for one in the media, when the knives are out for all those who are not.

Please support the online petition and the one month to heartbreak blog

Thank you for reading.

YeButerfleogeEffete Fri 21-Jan-11 11:14:52

Message withdrawn at poster's request.

ReclaimingMyInnerPeachy Fri 21-Jan-11 11:23:22

Cressa excellent post.

I hope not to get CA soon: I have possibly got a few week's work lined up on a short term contract, and hope my own business will start to pay from April (until then seting up website etc so will be income neutral I think). Give it a year and I want say goodbye to the whole lot forever.

But DLA isn't for me, it's for the boys: every letter I get starts with 'This letter is about the person you are caring for'. I hope that the extras it has got ds1 will mean he can work, I think it probably has- that's got to mean a success in any definition I think, he will pay more in tax than he has had by a long shot. DS3 though cannot work. He is increasingly withdrawing into his own world (ASD) and although he talks he has significant issues, and his obsessions- !. DLA means we can keep him safe. Safe matters.

Mouseface Fri 21-Jan-11 11:29:06

Great post Cressa thank you for taking the time to write it and put it on here. smile

Mouseface Fri 21-Jan-11 11:38:38

Something else to consider......

If you are awarded the highest rate of DLA, then you also have more money from Tax Credits if you claim them.

Do we know if the DWP are planning to keep this the same when/if PIP is brought in?

Jordansmum1997 Fri 21-Jan-11 11:45:24

I am so pleased to see this campaign. I know from personal experience how the sick and disabled are being victimised and villified by the government. I have chronic Chrons Disease and Chrons related arthritis. I not only suffer the indignity of frequent incontinence but suffer daily pain with my hips, knees, feet, wrists and hands. I used to work 18 hours a day in my own business but I was told by my specialist I had to give it up or I would die, my son was only 5 yrs old at the time, I had no choice so I stopped working. Now Im being made to feel like a worthless scrounger for being ill. Its not fair. I cannot believe that the people of this country have lost their compassion. The problem has been this continuous drip feed of 'benefit scroungers' stories. Im not saying their are no benefit cheaters but we shouldnt forget that the amount lost in fraud is a fraction of the amount in the pot of unclaimed benefit that people are entitled to but do not claim. Three times as much is lost to clerical error than is lost to fraud and it is a drop in the bucket to the amount lost to tax avoidance but those who are more than able to afford to pay it.
The sick and disabled cannot take to the streets as by definition, they are not fit and able enough to do so, this makes us an easy target for the government. We need those with a sense of justice and compassion to help in the fight. I hope and pray that Riven gets the help she needs, having an autistic child myself I know how difficult it is to cope with a disabled child.
Thank you mumsnet and all the good people on here who has given this mum some hope.

Rhydian Fri 21-Jan-11 11:46:25

DLA reform is up for consultation, including 'pssports' to other benefits, so we won't know about PIP and tax credits for a few months yet.

Mouseface Fri 21-Jan-11 11:53:55

Thank you Rhydian smile

Rhydian Fri 21-Jan-11 12:00:39

By the way, Cressa mentions the One Month Before Heartbreakonemonthbeforeheartbreak.blogspot.com/ blog which is a recent campaign by The Broken of Britain -tbofb-one-page-summary.html to draw attentio to our campaign over DLA www.petitiononline.co.uk/petition/petition-the-min ister-for-disabled-people-to-recall-the-public-con sultation-on-dla-reform/569/0aa4fc2026635b34c32b57 a1e644d746. We asked people to blog on the 14th-16th of January on disability issues - one month before the DLA consultation closes on Valentine's Day. The OMBH blog is well worth a read, to help you understand why DLA is so important.

LeninGrad Fri 21-Jan-11 12:12:40

Heard on the radio today that our council is cutting £3m allocated for getting children with disabilities to school.

I'm trying to work out how this fits with changes to DLA and school provision in general. It seems to be me that if all and any allowance went just on getting to school there would be nothing left for other activities.

How are these kids going to get to school? Seems utterly shameful to remove this to me.

TessOfTheDinnerbells Fri 21-Jan-11 12:14:04

JUSTINE!!!

Question Time: Upcoming Dates & Audience Tickets.

http://news.bbc.co.uk/1/hi/programmes/question_tim e/3117500.stm

Question Time also appear to still have 10th Feb with no venue yet. Any suggestions?

How about in the offices / HQ of Mumsnet?

TessOfTheDinnerbells Fri 21-Jan-11 12:30:44
Rhydian Fri 21-Jan-11 12:35:10

You're welcome Mouseface. Can the people using this site help me rally Mumsnet to our cause? I e-mailed MNHQ asking them to support our campaign this morning but I appreciate that they are busy, and am hoping that some regular users could remind them. With Mumsnet backing our campaign we'd be unstoppable!

ReclaimingMyInnerPeachy Fri 21-Jan-11 12:40:16

QT coming to my town

Have applied, thnaks

ReclaimingMyInnerPeachy Fri 21-Jan-11 12:40:51

Oh if they pull out school transport one doesn;t go, the ASD bases are opposite ends of city can't cut myself in half can I?

LeninGrad Fri 21-Jan-11 12:49:02

Astonishing isn't is Peachy.

ReclaimingMyInnerPeachy Fri 21-Jan-11 12:56:03

Stupid yes

Astonishing sadly no

Though in fairness I don;t think it's too bad egre for that sort of thing but Assembly cuts a year behind apparently

Mouseface Fri 21-Jan-11 13:01:26

£3 million! shock

Lenin - what are they expecting parents to do to get their children to these much needed school places? My God, it's hard enough getting a disabled child a place in mainstream or special school, with the support that they need, you fight and fight just to get that.

It takes months and months of form filling, waiting, fighting just to get the most basic of help and give a child with SN/LD the right to an education.

And now they cut the budget for getting children to the schools?

This is just getting worse the more I read.

What can we do?

LeninGrad Fri 21-Jan-11 13:13:03

I don't understand what they expect people to do. It's actually £3.84m being cut from the school transport budget and services affecting children with disabilities were mentioned specifically.

YeButerfleogeEffete Fri 21-Jan-11 13:25:24

Message withdrawn at poster's request.

ReclaimingMyInnerPeachy Fri 21-Jan-11 13:26:09

People think why should they get a taxi to school you see so they get away with it. I don;t think many relaise we are whole famillies not simple mum- dad- sn child entities.

But ds1 will attend a base ten miles one way from September; ds2 the local primary; ds3 a base twn miles in the opposite direction, ds4 the infants of lcoal primary (pre-school)

I can't even pick one up as I have to be there for the other getting home. And still pick up ds4 obviously; ds2 couldwalk home alone, not so sure about a 3 year old LOL.

Well, if DH packed in his career I guess we could pick one up but that would the state a FORTUNE.

Luckily the SEN dept here get the whole more than one child issue so I think would still help us.

I cpuldn't home ed ds1 and ds3 together and guarantee ds3's safety so I might do an ostrich on this one for the time being LOL

YeButerfleogeEffete Fri 21-Jan-11 13:26:40

Message withdrawn at poster's request.

ReclaimingMyInnerPeachy Fri 21-Jan-11 13:27:25

'Why are people so obsessed with low taxes?'

becasue
It Couldnt Happen To Them

Mouseface Fri 21-Jan-11 13:27:38

It's just so atrocious. sad

LeninGrad Fri 21-Jan-11 13:28:39

Yes, no-one ever stops to think would they would do or need if their circumstances were different.

ReclaimingMyInnerPeachy Fri 21-Jan-11 13:29:03

There'd have to be a bbus for ds's to use it; ds1 could technically get to central depot then catch one but couldnt manage

ds3 would ttake hours, and would never arrive, dependent on escort

YeButerfleogeEffete Fri 21-Jan-11 13:39:59

Message withdrawn at poster's request.

hannahdla Fri 21-Jan-11 14:22:26

Hsve you seen Leonard Cheshires campaign around cuts to DLA mobility allowance. They have petition people can sign here http://www.lcdisability.org/?lid=15392

and lots of info around the campaign
http://www.lcdisability.org/?lid=14585

Rhydian Fri 21-Jan-11 15:16:51

hannahdla

It's a good idea to sign that petition along with the one I posted above - the Leonard Cheshire one is just about the mobility allowance, whereas the wider reforms should be objected to as well.

Jux Fri 21-Jan-11 15:35:41

I have signed every petition on this page. Thank you everyone. I am very scared; my DLA is the only benefit we claim. Our income is less than 15K. There are people in our area who are worse off than we are; we're managing because of the DLA but without it we won't.

Rhydian Fri 21-Jan-11 15:57:15

Jux, please don't worry too much. The Broken of Britain is going to fight this tooth and nail, and you're not alone. I'm putting together a consultation submission for the group. If you want to, click on the link I pasted above and take part in crafting the submission. I'm looking for testimonies, especially from Mums and family carers, so maybe you can help me.

Mouseface Fri 21-Jan-11 16:03:56

Jux - can you not get Tax Credits? Or Housing Benefit/Council Tax reduction?

Sorry, just thinking out loud. Obv I don't know your situation.

DarkDivinity Fri 21-Jan-11 16:21:57

FioFio
"This is all incredibly depressing".

In my opinion "incredibly depressing" is just the tip of the iceberg when it comes to describing what it's like.

In my opinion for me it's awful especially not having been officially diagnosed with mental health and neurological problems I have to cope with most days.

The position I am in now in regards to how I feel is not good, I just see my future as a bleak wasteland.

Anyway onto a more positive note if there is really such a thing, I am glad to have found this place through mention of it on the BBC Ouch! Messageboards.

Rather disappointing that the petition hasn't even got 4000 out of 10000 yet but I guess there is still time, after all the petition was started in December 2010.

DarkDivinity Fri 21-Jan-11 16:23:38

Hope I didn't come across as self-involved my voicing how I currently feel. I am really not a person who is selfish and self-involved, I just needed a little moany vent.

poppyknot Fri 21-Jan-11 16:26:00

Rhydian - just to say thanks for all the work on the Broken of Britain etc. I am trying to get my head round the DLA consultation (just reading the document makes you lose heart.........). Your letter to Maria Miller really says it all.

Has there been any answer to the question about the ridiculous timing of the consuluation (the short curtailed-by-Christmas-and-the-weather period) and the fact that it is so poorly publicised. I first came across news of it on here and from there found B of B and BenefitScroungingScum. But otherwise I would have been in ignorance of the whole thing. The Guardian (bless them!) seem to be the only mainstream media that are covering it. The BBC news website did not even cover the opening of the consutation. (Shame on them!)

I am in receipt of DLA and am lucky to have some time on my hands to pursue this. It could have been so different.

WilliamBarton Fri 21-Jan-11 16:35:43

in answer to you question about my mother, she died, in an accident, when i was young, this bieng one of the reasons i attended a military boarding school. as an adult i decided that killing for a living was not for me so while there is no consscription the queen looks after my guns

happy now?

MmeLindt Fri 21-Jan-11 16:39:41

Good to read the info and see that people are posting and signing the petitions. I will write another blog post this evening.

Can I ask those who have spent more time with this something?

My Dad gets DLA due to his COPD and chronic asthma conditions. I told him that he has to look into the reforms, and what it would mean to him.

He said that the reforms are only to root out those who are of working age and should be working.

Which tells me we need to do more to show the general public what the reforms will really do.

But do you know if it is true that they will not reassess retired DLA claimants? He maintains they won't reassess him.

billyboy1 Fri 21-Jan-11 16:43:31

what is happening to the sick and disabled now makes me ashamed to be british. cameron said that he new how hard it was to fill in the forms and get dla why did he need to claim he is a millionair. seems to me that the tories and hitler would have got along well. we must stop the changes to dla because if you have it now it is a cert that it will be taken away on your renewal date. if we do not protect the sick and disabled then we are on the slippery slope to god knows what. up the revolution.

Mouseface Fri 21-Jan-11 16:48:03

Mme - that would make sense wouldn't it? If your dad is of retirement age, I can't see that they'd for him into actively seeking work.

Well, you'd like to hope not.

Can you ask anyone for him?

I thought that you couldn't get DLA over the age of 65?

billyboy1 Fri 21-Jan-11 16:55:14

you can not claim dla if you are 65 or over but it does not stop when you reach 65.

WilliamBarton Fri 21-Jan-11 17:01:13

Message deleted by Mumsnet.

WilliamBarton Fri 21-Jan-11 17:02:26

'onerous', remember?

Mouseface Fri 21-Jan-11 17:06:35

Guess who has only posted on this thread?

Funnily enough, last night's bridge dweller had only ever posted on here too.

<sighs>

yeah, I'd been advised they'd been banned.... reported to MNHQ but nothing happening...

Mouseface Fri 21-Jan-11 17:13:03

Will report now Glitter smile

Akire Fri 21-Jan-11 17:17:04

A big thank you to everyone whos supporting this thread, Please if you have five mintues sign one petition or email your MP.

Ive just spend 6 weeks filling in my a 12 page response to the DLA as I rely on it and obviouly have more insight than most.

Dont be fooled into thinking surely those who need it will still get it, as in all disability benefits inclduing the dreaded ESA we are all in for a rough ride.

You could be the one tomorrow who wakes up with a incucurable illness and have to fight that and fight for benefits at the same time.

judyblueeyes3 Fri 21-Jan-11 17:17:54

I would like to say I feel so heartened by the positive responses I have read here about the awful cuts and changes to ESA and DLA for ill and disabled people.

The DWP currently have a backlog of 29,700 complaints about ESA which have not yet been referred to a tribunal. The next highest backlog is disability living allowance with 9,600 outstanding. Outstanding complaints about all other benefits administered by the department number just 19,750.

These figures were revealed by Maria Miller, minister for disabled people in October 2010. As many more people have since been put through assessments since then by a Private company using flawed methods, you can imagine that the number has risen greatly since then…it hasn’t even begun! Already the CAB have been receiving over 8,000 complaints a month about these matters.

This must be stopped. Innocent people have been at the mercy of unfair and biased tests and no more people should be put through this until the problems have been rectified.

One thing I would like to see agreed upon is that any child, or adult, who has already been given a ‘Lifetime’ or ‘Indefinite’ award of DLA, because of the severity of their condition, should not have to be re-assessed. They have already gone through the ordeal of submitting 40-50 page forms, GP letters, Consultant and Expert reports, had medicals etc. It is simply cruel and inhumane to expect them to have to go through it all again when their condition has not changed. It will only cost more money and it will mean an ever-increasing number of appeals added to the already unsustainable backlog. This means real people without the money to support their real needs for a very long time.

judyblueeyes3 Fri 21-Jan-11 17:24:03
2shoes Fri 21-Jan-11 17:26:54

sorry late to this thread, had campaigns in hidden topics.
will have a good read now, how good to see so many people posting about such a important topic that will affect everyone at some time.

I am very worried about the idea of dd loosing money as she has a powered chair.......do you think the fact she will always need someone with her(no danger sense, severe CP) will help.

ThisIsANiceCage Fri 21-Jan-11 17:27:27

MmeLindt

DLA has nothing to do with whether you're working. It can be used to pay for a wheelchair and taxis into work, for example, because those are additional costs someone has because they are disabled.

The proposal is that DLA be abolished. So if your father currently gets DLA, he won't any more. If he were under 65 he could presumably then apply for Personal Independence Payments, which are meant to cover the same things, but the funding will be 20% less than DLA (lower payments or fewer awards, who knows). Possibly he could apply if he's over 65.

I don't know much about Attendance Allowance for over 65s, but there was an attempt under the last government to cut or abolish it (I think the idea was to give the money to local councils instead, but not ringfence it. So for many people that would have meant losing help entirely.)

Benefits and Work ran a campaign at the time.

Disability Now reckon the same scheme will be tried again shortly.

It's inconceivable your father will still be getting DLA in a few years time if this goes through.

FioFio Fri 21-Jan-11 17:28:08

Message deleted

2shoes Fri 21-Jan-11 17:29:39

FioFio good point, dd's was caused at birth, can't test for that.

FioFio Fri 21-Jan-11 17:29:47

Message deleted

Rhydian Fri 21-Jan-11 17:32:49

poppyknot

I have heard nothing about the timing, but it seems suspicious to me. It's almost as if they wanted to hide an attack on a vulnerable group during the Christmas season...

MmeLindt

I'm afraid your Dad is wrong on this. The plans are to reassess everyone, regardless of age or severity of disability. It's stupid, but somebody like me, severely disabled with an untreatable condition will be reassessed, as will others more disabled than me.

FioFio Fri 21-Jan-11 17:37:55

Message deleted

Akire Fri 21-Jan-11 17:43:34

Should have added this page from leonard cheshire gives real stories about how the dla cut will affect real peoples lives.

http://www.lcdisability.org/?lid=14623

Sign their petition no registration required just name and email. Will take you less than 5min

Mouseface Fri 21-Jan-11 17:44:36

Fio - and others, it's shit isn't it?

You can bet that even if the person claiming has only just completed the pages and pages of questions on the forms, only just had a medical assessment, only just got all the relevant letters from their GP/Physio/Carer.....

That they'll be assessed again under the new rules.

What a waste of time and money.

tabulahrasa Fri 21-Jan-11 17:48:03

MmeLindt

at the moment there are no plans to stop DLA for pensioners or children, but it's important to remember that 6 months ago there were no plans to scrap DLA at all

Rhydian Fri 21-Jan-11 17:56:23

Mouseface

You have it right. And worse than that, as a lot of conditions just never 'get better'. My genetic condition is for life, no matter how many times DWP check. The new plans are for regular reassessment every few years. A complete waste - and we're told government needs to save money.

ThisIsANiceCage Fri 21-Jan-11 17:58:02

tabulahrasa - I don't understand, I thought the plan was to scrap DLA altogether and have a new benefit, PIP.

Akire Fri 21-Jan-11 18:04:19

Yes they do want a new version called PIP they want to move the goalposts of a not perfect system but starting out by saying that they are cutting 20% of its budget is so wrong.

It implies no matter how many more people get ill, or take longer to die as advances in medicine improve the budget will be stuck as it is. Then laughingly propose to call the new version both personal and individual

StartingAfresh Fri 21-Jan-11 18:08:13

buzzy The majority of families with children with disabilies do not think that SS are capable of doing a fair assessment. I am amongst their number I'm afraid.

There are many problems within Social Work that would not be good for families to get mixed up in.

tabulahrasa Fri 21-Jan-11 18:08:17

they are scrapping DLA and introducing PIP, but they're saying that at the moment they're leaving pensioners and children out of it, for now...

but when they first started benefit reforms they said they were leaving DLA out of it..

so basically they're staggering it, lol

ThisIsANiceCage Fri 21-Jan-11 18:17:00

Oh, so the usual distraction technique? When challenged about all DLA they'll say, "But we're not taking it from pensioners and children." Then once the change is bedded in it will be, "Just bringing the pensioners and children into line."

We could play PR-technique bingo with this, couldn't we?

tabulahrasa Fri 21-Jan-11 18:20:09

pretty much grin

StartingAfresh Fri 21-Jan-11 18:21:11

buzzy I think your post illustrates why social workers are not capable of making the decisions you seem to think they should.

My ds has a diagnosis of moderate-severe ASD, but social services have decided that we are entitled to NO support or respite.

The say we are coping. Well I told them I was not, and they told me that in their professional opinion I was and that was the end of it.

I am now. I wasn't then. Things were extremely serious. I suffer mental trauma now for how treated my children at that time. If anyone had known it would have sold newspapers. This happened long before this government were in power.

I agree I got a crap social worker (although it was in fact a whole team because I changed a few times to try and get someone with intelligence) and that not all are like that. But in my case, 100% were like that, and that is reason enough to believe that those kinds of decisions are dangerous in the hands of social workers.

'What I do do in my practice is help people improve their quality of life by helping them access care and support services and resources'

What do you do in a case where the resources that the family feel they need is outside of your experience or at odds with your beliefs?

Having a diagnosis

lisa1cares Fri 21-Jan-11 18:30:43

You totally have my support, If there is going to be organised marches I hope they will be national wide so all the disabled can get to them I really expected more from this PM I might not have voted for him but I did think it would be ok as he knows how hard it is to have a child with disabilities how bloody wrong was I to think he might care. I have 3 children with different disabilities, my eldest has ADHD/MD and does not know what sleep is, she is a 24 hour job all on her own, my 7 year old has chronic brittle asthma goes into hospital at least 7 times a year and problems with her immune system (causing repeat pneumonia) we have nearly lost her several times, my 6 year old has asperger (autism) and now my 5 year old has a heart murmur and possible congenital heart disease. and what makes me mad is that we do not claim DLA for my autistic child as I feel like a scrounger as it is. it took us 3 years before we would go for DLA for my daughter and it was the respiratory nurse that got us to get it. and add to that I have bipolar and my father has parkinsons disease Does this stupid PM not think I have enough to deal with ?? Riven is an amazing person and I totally understand how hard she find's it. I went to social services asking for help and got told we can not have anything not even an 1 hour. The women that dealt with us was so apologetic she really want to help us but couldn't. They said as a family it was clear that we needed the support but they could not deal with us like that each child/person is dealt with in an individual basis and as such one of us on our own did not meet the criteria needed but as a whole we did. and as if that was not bad enough, My partner works as a postman and we have been told that if we went onto full benefits we would be around £800 a month better off, but again we don't want to do that. Its so stressful on an everyday basis in my home and now I have the added stress of not knowing if I will be able to look after my children by the time PM has finished. I love my kids they are my whole world but how on earth am I suppose to meet their needs with out any money ??? How am I suppose to get them to their appointments, how am I supposed to meet their needs??? (live in a semi rural area) We live in a 2 bedroom house yes all 6 of us and only 2 bedrooms because we could/can not afford a bigger one and even to rent one big enough would cost to much. If we loss the DLA we will loss our home and thats not to say the DLA pays for our home but if we had to meet their needs with out DLA then the money would have to come from somewhere. lets hope he has built a lot of council houses because we will need one by the time this PM has finished. Sorry this has turned into a rant I am just so stressed out with it all. So that's no health care for us, no support for us and no DLA which will lead to lossing my home what else does he want to take away ??? my will to live ???

judyblueeyes3 Fri 21-Jan-11 18:35:56

Yep. The important thing is we must protest big and loud, so they can't ignore us. Sign petitions, email mp's tell everyone you know, tweet, text, facebook it out there!

judyblueeyes3 Fri 21-Jan-11 18:41:00

an awful lot of us have to do our protesting online because we can't get to Marches etc. and that's why we need support from others who can!

Mouseface Fri 21-Jan-11 18:55:53

Ah, the 'coping' parent.

Amazing isn't it? You are seen to be coping if you are at home with your disabled child the whole time.

You are seen as coping if you don't really call anyone for advice on a situation, don't 'bother' anyone.

You are seen to be coping if your child is rarely admitted to hospital and let's face it, when they are that gives you a break, right? hmm

You are seen to be coping because Mrs Jones saw you 'only the other day' and you smiled and waved and even had a little chat with her.

It was my birthday last week. One of my closest friends sent me a beautiful necklace. It has a hummingbird charm on it.

She wrote inside the card "this is like you, unless you slow the film down, you can't see how fast they are flapping their wings, just to stay in the air"

That spoke volumes to me.

ThisIsANiceCage Fri 21-Jan-11 19:02:39

Oh mouseface that's such a great metaphor. What a lovely friend. smile

ThisIsANiceCage Fri 21-Jan-11 19:07:49

My motto used to be "There are no prizes for not coping."

It took a nervous breakdown for me to realise that there were no prizes for coping either - but it did allow the people pissing on you and calling it rain to carry on doing so with impunity.

These days I'm into righteous anger instead. grin

ThisIsANiceCage Fri 21-Jan-11 19:07:59

My motto used to be "There are no prizes for not coping."

It took a nervous breakdown for me to realise that there were no prizes for coping either - but it did allow the people "pissing on you and calling it rain" to carry on doing so with impunity.

These days I'm into righteous anger instead. grin

ThisIsANiceCage Fri 21-Jan-11 19:08:55

And I have enough anger for two posts!

Jux Fri 21-Jan-11 19:09:02

I feel like a fraud claiming anyway. I felt like a fraud when I filled in that form, I felt like a fraud when I appealed and won. I can't go through that every couple of years.

It's so horrible sitting there thinking "OK, what did I used to do when I was normal that I can't do now? Oh, I know, everything." It's too depressing. All the time, you're trying to make the best of your condition, you tell yourself it could be worse, I can still do this (well, sort of - don't think about that too closely), there are people worse than I am, and all that; but I don't have a bloody life.

I keep as cheerful as I can because you can't live day to day thinking about it. Once I'd gone through that form I never wanted to think about it again. It's making me cry just thinking about it.

Mouseface Fri 21-Jan-11 19:14:00

grin cage

It's true though. I'm on medication for anxiety, stress and panic attacks. It seems that until you break, you don't realise what 'coping' does to you.

Oh Jux sad

Here, have one of these but don't tell anyone. {{{{hug}}}}

SqueezyLouise Fri 21-Jan-11 19:17:20

Hi I'm defanatly with you i suppose my little girl Ashley will get Dla no problem as she as spina bif/ hydrocephalus and discolated hips , what I'm afraid of is with them wantin to some peoples they may stop my son who's 8 he as global delay / dispraxia , learning probs even though he walks like most people he never complains but his legs n hands hurt so bad he finds almost everything hard , and I do think these childeren will suffer most

ThisIsANiceCage Fri 21-Jan-11 19:19:09

Jux, I could have written your post. Right down to the last line. <passes tissues>

Mouseface Fri 21-Jan-11 19:26:24

Squeezy - I am HOPING that they will continue to award DLA to your son and mine.

He has 'Complex Needs' and GDD is one on his long list.

Other than the feeding tube on his face going into his nose, he looks like a 'normal', if not very small, toddler.

At present, they estimate him to be 6-9 months behind where he should be.

The fact that your son can walk should not exclude the fact that he is in pain the whole time when doing so.

I just HOPE that once they do start to re-assess/assess people who desperately need to claim DLA for themselves or others, that they take into consideration, what has been documented already.

judyblueeyes3 Fri 21-Jan-11 19:33:16

lisa1cares

"... You totally have my support, If there is going to be organised marches I hope they will be national wide so all the disabled can get to them"

Have just seen this about protests -

benefitclaimantsfightback.wordpress.com/

lisa1cares Fri 21-Jan-11 19:33:46

mouseface do you know what you are so right, I gave up asking for help because no one will help us anyway and as for the going into hospital thats not easier, I go back at 9:15 after dropping off the kids at school sit with her until about 3 am come home do a little cleaning get the kids stuff ready for next day then the daughter who does not know how to sleep gets up and I have to deal with her and this can go on for 2-3 weeks at a time. Don't get me wrong my partner is fab and my mother in-law is totally amazing at near 70 I really can't keep putting on her. and then there is the costs of getting to the hospital there isn't any direct bus and the bus in the end would take around 2 hours and cost more then a taxi so I get a taxi £15 each way. and I take sandwiches for my dinner but have to pay for the coffee in the hospital (most staff give it me free as they know us so well ) then my partner comes up and that costs petrol which is not cheap. this is a never ending lists of costs and stress and thats just the normal hospital if she ends up in ICU thats even more stress and more costs

Cage I have been past breaking many times and been admitted to the mental health wards but still no help for us because clearly we can cope. what a joke

Mouseface Fri 21-Jan-11 19:48:38

lisa - exactly. That's what DS's DLA pays for.

Luckily, the staff at our nearest hospital (we are rural) know us too so they will make me some toast.

But I'm on my own, all day as DH needs to work and make sure DD is okay.

When we go to Birmingham Children's Hospital, we use DLA to pay for parking (which is astronomical) and fuel. My MIL comes to see me and DS. She brings me food and drinks.

I get no sleep or rest and have mobility issues so having no bed proves horrific. I can't sleep in a chair as I get stuck. The only option is to hope that someone leaves the always over crowded parent accomodation, so that I can lie down for a few hours or pay for a hotel which means being out of the hospital.

You can imagine that I never want to be away from DS.

When he's in PICU it's worse. The stress is unbearable and watching children die in there is beyond words but it happens. And you can't help but think, 'that could be DS'

It breaks my heart. But needs must. We have to travel to these places to get DS the treatment that he needs.

As do many other parents. Parents who rely on DLA to get there, to live day to day because they can't work. They want to care for their children/families etc....

It would cost so much more if we all turned round and said balls to this, I'm putting him/her into residential state care.

But we won't.

We want to care for our charges at home. At their homes.

It's all just so wrong.

Mouseface Fri 21-Jan-11 19:49:13

blush

Sorry, epic rant. Tired, in pain and hungry!

ThisIsANiceCage Fri 21-Jan-11 20:07:30

NATIONAL DAY OF PROTEST AGAINST BENEFIT CUTS Mon 24 Jan

Protests around the country including Triton Square London and Lydney, Gloucestershire; Brimingham, Tyneside, Brighton and more.

Is this the big'un? Worth starting a thread here and rallying the troops to turn up with pics or other representations of those of us who can't make it?

wich1west Fri 21-Jan-11 20:09:16

We are in line for the DLA review. There are practical problems with all this. What we and the media seem to ignore is that it is our taxes which provide the money for the benefits. All the taxes from individuals and business provide the government money for education, benefits, etc.. If there isn't enough money in the pot to go around then what confused? Living with disability is living in a world where 'essentials' cost.

Maybe the campaign should be to get all to pay their full taxes and businesses (e.g. Boots) to also pay their full taxes in Britain even though there is a loophole where they can legitimately pay less by registering offices in another country.

DLA would still have to be fairly rationed but there would be more of it to distribute to those who need the benefit.

malvolio Fri 21-Jan-11 20:11:09

As the 65 year old of a 38 year old disabled daughter I want to let you all know that when a parent or carer , who is having the provision of care subjected to the possibility of being reduced , can always legally challenge those reductions in service.

The Legal Services Commission are able to provide a list of solicitors , within that persons locality , who are able to provide legal advice under the Government's Legal Aid scheme which falls into the Community Care criteria.

The UK's leading solicitor, who takes up such cases on behalf of parents and carers of disabled children is Yvonne Hossack. You may remember that in September 2009 the national newspaper " The Independent " placed her on the front page of the Saturday edition calling her " The Good Lawyer " , after she had been cleared of all charges brought against her by three local Authorities.

So I urge everyone who cares for a disabled relative and is having their care services reduced do challenge these reductions as it is your right to do so.

It is time now to start " kicking the sand back into the faces " of our Eton educated Government Ministers who all have wealth behind them and do not have a clue at all as to what is involved in caring for a disabled loved one.

I urge all of you in this situation to contact your local MP and remind them that both Tony Blair and David Cameron promised, after they were elected, they would ensure that the elderly, vulnerable and disabled people would be cared for within our society.

Both of these men have failed to carry out their promise. Carers save this country millions of pounds a year. We supposedly live in one of the most sophisticated and cultured countries in the world but the way our present Government are wanting to impose savage cuts I believe we are regressing backwards into a more landed feudal way of life where the wealthy do not have any morals in respect of looking after the care and well being of the less fortunate in our society.

If you have any local organisations who are planning protests against these savage cuts then please get involved. You need to show our Government " Enough is Enough ".

lisa1cares Fri 21-Jan-11 20:49:12

OMG mouseface our hospital has pull out beds but I don't use them because I have to leave at 3 am to get home and if you got a blue badge here the parking is free but can only use that if we are picking her up or dropping her off. other than that yes its very expensive to park and yes it is heart breaking seeing children pass away. I dare not get close to any parents any more been to to many funerals now. I have been saying on labours facebook page for sometime now that taking it away will cost them more in the long run because so many would have no choice but to put there children in care or adults also would have no choice.
rant all you want hun it does us all good to get it out sometimes.

wich1west
If they dealt with all the real scroungers like 2nd 3rd etc etc generations in fact whole families that can work but are to lazy to do so and sit on benefits take it off them that would fix half the problems.

so you think that it needs rationing so who you going to pick to to go into care first? sorry but thats how it is for me. Do you say the mentally ill don't need it or people with autism or is it if you only have one arm you can use the other one??? possibly they could make it sort of means tested like if you have an income of 50k or something a year then you can't have it.

thisisnicecage
and when it comes to protest I think it would be best to cover the whole lot DLA NHS STUDENTS the whole lot of them all go to the nearest town hall on the same day that would get more of a response and a Saturday/Sunday would be best so as many as possible could attend at once. Monday for me is going to be hard its very short notice when you have so many kids you have to plan for everything but I will do my best to see if I can get a lift up to my nearest one

docfunk Fri 21-Jan-11 20:56:20

There seems to be a number of people in this thread saying they have no money for heating or food and the windows leek...

How do they afford a computer and internet connection but can`t buy food or heating?

bullet234 Fri 21-Jan-11 21:00:34

Maybe they use part of the DLA money to pay for the internet so they can access resources. We use sites like Do to Learn for Ds1 especially. And sites like this and another parenting site provide me with a wealth of support and information.

YeButerfleogeEffete Fri 21-Jan-11 21:03:36

Message withdrawn at poster's request.

YeButerfleogeEffete Fri 21-Jan-11 21:05:12

Message withdrawn at poster's request.

ThisIsANiceCage Fri 21-Jan-11 21:08:43

Yep, I for me the internet is a mobility-substitute. I often can't sit upright long enough to shop even with a wheelchair. And anyway would have to take expensive taxis. So I buy my knickers online.

I can't get out to get newspaper, and when I'm bad can't watch TV, so reading a nice, static, silent news website is my link with the outside world.

When I'm bad I struggle with phone calls (my speech starts going), so dealing with the bank through a website is usually better.

docfunk.... we have the money NOW. With reform the way it is proposed we then wouldn't.

A heck of a lot of resources are online as bullet said.

docfunk Fri 21-Jan-11 21:12:39

I was not trying to be "nasty" to people just that If I was broke the internet would be the least of my worries...

KalokiMallow Fri 21-Jan-11 21:13:51

How about
- can't go out
- can't walk around shops
- need access to info on getting help for disabilities

What's cheaper do you think? Internet or travel costs?

docfunk Fri 21-Jan-11 21:18:46

OK good point but How did those folk manage before internet?

KalokiMallow Fri 21-Jan-11 21:20:03

With difficulty I imagine, and relying on the charity of others.

ThisIsANiceCage Fri 21-Jan-11 21:22:11

Oh god yeah. I am profoundly grateful that, if I had to be ill, I timed it with the arrival of the internet. Being trapped in a mental cage as well as a physical one doesn't bear thinking about.

Rhydian Fri 21-Jan-11 21:37:49

Mums, you all seem very angry about this and willing to help, and as co-founder of The Broken of Britain I'm really happy that you feel this way. Pleas read this discussion of all the flaws in this Government's case for reform of DLA, before signin the petition] against.

lisa1cares Fri 21-Jan-11 21:39:18

docfunk
do you not know they was given away free to lots of people as well as the internet. I was not entitled to one but loads of people got them. You can also get them through places like the family fund (never used them but know some that have) Second my internet connection is free it comes with the basic sky deal and before you start If I don't have sky I have no TV since I am in a stupid rural area that you can not get TV after the switch over and the digital boxes never worked here even though they said they would.

and can I also say that the internet is a lifeline to me its my only means of having an adult conversation outside of my house. Its also cheaper to talk to my family and friends then making a phone call to them. I use it for lots of stuff that does not involve chatting. you can even email prescriptions into the doctors these days and order repeats of medication. You can email doctors about appointments etc etc etc etc need I go on ??? the internet is way cheaper and the same when my daughter is in hospital I can text free messages to my partner so he knows whats going on with his daughter. As for heating do you need to keep your home warm 24/7 at the same temp ??? no ok so don't tell me about heating costs I have no choice but to keep it at a warm temp or she gets a cold and a cold leads to pneumonia and that well that can lead to anything but always leads to the hospital at the least and ICU if we have a bad lot.

and Don't talk about food to me have you ever tried to cater for a child with multi allergies do you think that's easy or cheap ??? think I can buy things that don't have clearly stated on it what is in it ??? I can't just pop to the market pick up say a chocolate log that has no label on it and its ok she can eat thats, it has to be clearly labelled thats not easy or cheap and lets face it food is getting more and more expensive as the weeks go on.

so before you put your foot in it any more do you think you should just ask those people why and not just prejudge ?? If it was not for my daughter needs my heating bills would be half what they are and the same with the food.

It's a time saver too. Rather than go down the bank you can do it online in a couple of clicks. Repeat prescriptions (of which there are many) can now be sorted online. Grocery shopping, scheduling medical appointments, and even DD's DLA application.

lisa1cares Fri 21-Jan-11 21:47:51

docfunk
Thats the point people did not manage, and also family connection's used to live around each other now family is spread far and wide like me my family live in Stafford and before you ask they moved to Stafford to take care of my sisters children because my sister had blood clotting disorder after having her children and also she is in the army and so is her hubby. so who is going to help me out my nearly 70 year old mother in-law ???

mistynow Fri 21-Jan-11 21:52:05

What does DLA mean to my family ? without it we will not be able to be a family !

First some background...

My daughter aged 33 has inherited a genetic condition from me, it is progressive and incurable, different rates of progression even between members of the same family are common with many Neuromuscular genetic disorders and she has recently gone blind. Last year Social Services placed her in Residential Care, a so-called temporary measure.

Our daughter received DLA for both Care and Mobility. care component was stopped as per the law once in Residential Care.

She has a son.

Residential Care Homes only allow children aged under 18 to visit if accompanied at all times by an adult. No privacy for Mum and child to be normal loving mum/son, no time to chat, laugh, cuddle

The Motaility Component of DLA funds a Wheelchair Accesible Vehicle for her so we get her out of there as often as we possibly can and bring her to our home and leave the two of them in our sitting room to try to enjoy themselves together, they need each other as any mum and son do.

Those bastards are going to stop her receiving that freedom as of October 2012 and basically deny her and her child any vestige of any life outside the walls of a room in a care home by stopping her Motability Component.

http://tinyurl.com/6fn9pld

MissQue Fri 21-Jan-11 21:53:18

If you are at home caring for someone who can't get out of the house, how are you meant to run errands anyway? When my dd is home at weekends, I can't do anything practical without the computer. I use it for all sorts of stuff, when she was recently diagnosed with the additional problem of epilepsy, I looked it up on the internet so I could learn more about it. When she was prescribed meds for it, I looked them up too. She uses the internet for leisure and education purposes, and I use it as a way of keeping up with friends so I don't feel completely isolated and alone.

mistynow Fri 21-Jan-11 21:55:00

http://www.muscular-dystrophy.org/get_involved/cam paigns/campaign_news/3133_new_petition_launched_sa ve_dla_mobility_component

MissQue Fri 21-Jan-11 21:56:04

Misty, that's horrible that your daughter can't spend time alone with her son sad They should make an exception for someone who has a young child. In my experience, care homes are not geared for individuals at all, it's not right angry

Rhydian Fri 21-Jan-11 22:02:01

mistynow

i am really sorry to hear about that. please help me put together a good submission for The Broken of Britain on the proposed DLA reforms.

mistynow Fri 21-Jan-11 22:06:38

MissQue

Rules are bloody Rules.

Care Homes are NOT pleasant places to visit not even for your own child to have a much needed mums cuddle !!!

Had a set to with her Care Manager today on the subject but

Rules are Rules.

Once we can no longer have a DLA funded vehicle for her she will be a prisoner

and a child will lose the right to cuddle his mum in privacy

Bloody promise breaking government.

oh and David Cameron claimed DLA for his child....

Mouseface Fri 21-Jan-11 22:10:20

I'm going to bed but will be back to offer my support tomorrow.

Hopefully without bridge dwellers causing trouble.

Night brave parents xx

lisa1cares Fri 21-Jan-11 22:14:29

OMG david got DLA cheeky ** ** ** fill in the blanks your selves. the man is worth 3.3 million before he ever was PM why does he need DLA. See thats what I mean if it was means tested anyone over about 50-80k does not need it, then greedy people like david would not be able to claim it that would solve half the problem. I feel like a scrounger and I have nothing and he claims it when he has all that money grrrrr

lisa1cares Fri 21-Jan-11 22:15:34

night mouseface hope you get some rest I am still waiting on my eldest going to sleep another few hours maybe

ThisIsANiceCage Fri 21-Jan-11 22:22:52

Ooh mistyface, I've long wondered about that. How do you know that one?

mistynow Fri 21-Jan-11 22:31:00

ThisIsANiceCage

One of those things that has been common knowledge among adult disability forums for a long time,

he actually mentioned during the election camapign how complicated he found the forms to fill in when they claimed for their son.

He also promised not to touch DLA if they were elected...

MissQue Fri 21-Jan-11 22:36:47

It obviously doesn't matter any more because poor little Ivan isn't around any more, so Dave doesn't need to claim his DLA any more.

lisa1cares Fri 21-Jan-11 22:43:33

oh no missque if he was around david would give it up as an example to us all not that the every day person has 3.3 million to fall back on toff noise t**t he does not care about us.

nutbrownhair Sat 22-Jan-11 07:52:44

Yes, just join the Labour Party for a pound if you're under 27,link in with their campaigns on Facebook and Twitter to get all the updating,campaigns etc! I want to get back to a caring society too - will post around about this!

nutbrownhair Sat 22-Jan-11 07:56:09

Whoops, maybe that classes as 'another campaign?' - how do I edit or delete or move?

WilliamBarton Sat 22-Jan-11 08:39:19

so the premis that sparkly panties calls for my censorship is that i defend myself in personal attaks on my late mother and myself, all based in inccorect assumtion. I had a choice to ignor it, challenge robustly or launch an equally personal innacurate attack. because i exposed her making things up about what has been said to her by reps of the authorities simply doing all they are individualy capable of. suggesting that with or without DLA people in simmilar circumstances will both flourish and fail. suggesting that if someone is unwilling and/or unable to take care and provide for themselves then it is less likely that they can satisfy another's need.

it is in societies best interests to provide and offer support for those who can't/won't. the attitude that because there is a need then it must be met on the terms of the claimant is preposterous. as some may recognise the people in need that they care for have thier needs met on the terms of the care giver not the other way around.

I have read page after page of emotionaly loaded, exaggerated and logicaly flawed reactions to clearly difficult circumstances. it is the nature of the reactions that appears to me to be the biggest problem and barrier. many many people live in difficult circumstances accepting limitations of situation and celebrating the things they can do. these people survive and are happier. there is a lot of energy here, hold onto that and direct it profitably, i you like.

WilliamBarton Sat 22-Jan-11 08:49:28

read 'the diving bell and the butterfly' for inspiration or look to men and women of our armed forces who return missing limbs, thier change in circumstances often viewed as a complete breakdown of everything that defines them proffesionaly and personaly, thier reaction, varied but in significant preportions quite astounding and certainly insperational...i could go on. why is it that the success stories we see often have little to do with more or less benefits but the thoughts an actions of the claimant?

MadameOvary Sat 22-Jan-11 10:02:25

<ignores troll>
How is everyone this morning?
Spent ages reading this thread and am in awe of the lot of you.
Well, most of you anyway.
I too claim DLA and feel like a scrounger. Cannot believe what a shitty deal so many of you have had.
I have been so lucky to get support for my conditions but I dont expect my DLA award to continue after my application this year. I will appeal of course.
Have signed petitions.

Rhydian Sat 22-Jan-11 10:44:24

MadameOvary

Feel like helpinf The Broken of Britain put together our submission to the consultation on DLA reform?

Mouseface Sat 22-Jan-11 10:53:46

Morning all. smile

<ignores the relentless bridge dweller>

TotalChaos Sat 22-Jan-11 11:26:06

Thanks rhydian and others for the useful links will try and read and sign all over the weekend. My ds has mild sn and no real dx so i dont claim but so many of my friends have disabilities or are carers that i feel strongly about the social justice aspect of these reforms. Wonder if all those who dont object to the cuts or feel more respite shld not be funded will be handing back their CB.

TotalChaos Sat 22-Jan-11 11:26:43

Thanks rhydian and others for the useful links will try and read and sign all over the weekend. My ds has mild sn and no real dx so i dont claim but so many of my friends have disabilities or are carers that i feel strongly about the social justice aspect of these reforms. Wonder if all those who dont object to the cuts or feel more respite shld not be funded will be handing back their CB.

TotalChaos Sat 22-Jan-11 11:26:44

Thanks rhydian and others for the useful links will try and read and sign all over the weekend. My ds has mild sn and no real dx so i dont claim but so many of my friends have disabilities or are carers that i feel strongly about the social justice aspect of these reforms. Wonder if all those who dont object to the cuts or feel more respite shld not be funded will be handing back their CB.

Mouseface Sat 22-Jan-11 11:31:14

We heard you the first time TC grin

TotalChaos Sat 22-Jan-11 11:34:11

Sorry, curse of phone posting

TotalChaos Sat 22-Jan-11 11:34:39

Sorry, curse of phone posting

TotalChaos Sat 22-Jan-11 11:35:09

Sorry, curse of phone posting

Mouseface Sat 22-Jan-11 11:43:20

grin

Love it!

ReclaimingMyInnerPeachy Sat 22-Jan-11 12:40:23

I think WB has made a lot of assumptions in his posts.

Almost every caer I know was or is a taxpayer; many disabled people getting DLA is also. I hope ds1 will be.

carers (and CA is accessed via DLA0 all have a vote.

this is a democracy.

We all ahve a right to campiagn and ask for whatever we want. AS does he, and of course to fill in the DLA forms.

I wonder though when many lose ther houses when DLA is vut if he will mind stepping voer them in the streets, or that if DH and I lose our home we will end up in state housing and have to close both our fledgling businesses (no advice on trying to self solve neded ehre thanks) due to HA rules on not working from homes they provide.

Hmm.



Am aghast DC claimed DLA; we never claimed CTB all teh time we were entitled as we could afford ju