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Here are some suggested organisations that offer expert advice on special needs.

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SN children

Has this been mentioned yet? The Government are planning to to abolish "disability benefits"...

63 replies

CaptainPlump · 05/08/2009 17:26

I've been sent this link twice today, so I've just checked it out and I'm scared! If the Government stop Attendance Allowance and DLA and give all the money to Social Services to dole out as they see fit, we'll ALL be worse off. I don't know how we (or the majority of our friends with children with SN) would cope!

Has anyone heard about this? Any thoughts??

www.benefitsandwork.co.uk/news/latest-news/1091-100-days-to-save-dla-a-aa-from-the-axe

OP posts:
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mummyslittleboy · 18/08/2009 22:12

Have just read this and can't believe they are thinking of doing this I have just put in a claim for DLA i have no Social services help have signed and sent to everyone I know and am going to email my local MP if anyone can think of anything else I will gladly do it.

Sam

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LilyOfTheMountain · 14/08/2009 14:37

Right letter from Assembl;y Member today, he's also been a real high up (Heda of party IIRC) there and more personally went and chased the lea until they agreed toassess ds3

(Mike German btw)

I can scan the letter foranyone who wants uit but basically he says his colleaguewent to the reading of the green paper, and came away feeling this wouldn't happen; also that the website linked to is misleading and scaremongering

Apaprently the gtreen paper can be read at

here

I'm still a little wary but I do have a level of trust in this bloke

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Davros · 11/08/2009 20:11

Soc Svs are hopeless really. We've had good "service" from them because I find out what's available and request it clearly and I'm good at making our case. I use their services or DPs and then make up the rest myself from independent/charity providers. They wouldn't have a clue. I had to email the Head of the Children's Disabled Team here a couple of weeks ago to inform her that she was wrong that you can't use DPs to pay for services and you don't HAVE TO pay a person. She thought this, her staff thought this and they were telling parents this, argh!

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PeachyLaPeche · 11/08/2009 20:00

I think that would be the mobility component Stretch/ DLA comprises care and mobility,which can then link to motability /blue badge, though we don't get those.

I was discussing this witth DH and he very rightly said how on earth would SS cope? many like us who have coped without inout would be setting up camp tp demand the assessments that we are legally entitled to. Which in turn would cost extra for them, of course.

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Stretch · 11/08/2009 17:00

I've signed it, no DCs with SN or disabilities, but I think this is horrifying! I have no idea whether this is the same sort of thing, but my grandparents received a car with lower sides, room for a a wheelchair etc.. so that my nana can go out. Otherwise she would be housebound as buses are a complete nightmare for her and she can't walk more than a few steps at a time.

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2shoes · 11/08/2009 17:00

I have emailed a local orginisation to get their thoughts

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PeachyLaPeche · 11/08/2009 16:38

here

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PeachyLaPeche · 11/08/2009 16:29

Will try davros, doubt anyone willcare though

No repsonses yet from anyone else, including Carers Assoc.

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Davros · 11/08/2009 16:26

Sorry I haven't read the whole thread as we have been away (sans DS!) and I got the link from several sources and signed up.

Could I make a suggestion if it hasn't already been made? How about one of you regular, well known and trusted MN/SNers making a post on one of the general boards and asking all MNers to sign up? It would be a huge number and they would be doing it on behalf of us and others like us. Mobilise MN, having explained what might happen and why it would be SOOO bad?

Or would that just start people telling us we should eff off and think ourselves lucky?

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Frasersmum123 · 11/08/2009 11:29

We have only just been awarded out DLA, but its oing to come in real handy for us - The TV is on all the time, as is the washing machine, we go through nappies and juice like its going out of fashion and DS's diet currently consists of Mango and strawberries which dont come cheap!

Surely SS have enough on thier plate without putting this on them too?

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Frasersmum123 · 11/08/2009 11:26

I have recieved an email this morning from the Benefits and work people (had signed up from the link above) and this is what they sent back

Dear ,

Persuading disability charities to speak out against the threat to disability benefits is absolutely crucial. Unless leading agencies like Mind, Arthritis Care and the MS Society are prepared to openly oppose these proposals it will be very difficult to halt them. The government will be able to argue that they consulted with 'stakeholder' organisations and they supported the green paper.

So whether charities are swayed by the strength of your arguments or alarmed by the prospect of losing members who feel abandoned by them, it's vital that they commit themselves to defending AA and DLA. So far only RNIB has been courageous enough to risk the wrath of six secretaries of state rather than desert its members.

So what we're going to suggest you do today is to get in touch with a local or national disability organisation, preferably one that deals with a condition that affects you or someone you care for.

Even if all you can manage is a quick email saying:

'What are you doing about the green paper plans to abolish some disability benefits?'

that will be enough to make them realise people are aware of, and concerned about, the issue.

But if you feel able to write in more detail, below are some of the points you may want to make. We haven't written a standard letter or email for people to copy because we think that they may quickly be dismissed as just a sort of spam.

1 Explain very briefly that you are concerned about the proposals in the Shaping the Future of Care Together green paper to integrate some disability benefits into a new funding stream for a National Care Service

2 Explain why DLA care component or AA is important to you.

3 Point out that it's vital that their organisation work with other disability charities to fight with you on this issue, because the government will find it hard to ignore a wide coalition of disability organisations.

4 Point out that RNIB have put a statement on their website saying they will oppose the scrapping of AA and other disability benefits and that if such a reputable organisation is prepared to do this then there's no reason why every disability organisation can't do the same.

5 You might want to explain that at the moment the campaign against abolishing disability benefits is being led by a private sector company and that you think this is highly inappropriate, it ought to be a coalition of charities leading the way.

6 You may also want to suggest that if charities look the other way as their members are deprived of a vital part of their income then it may result in charities getting a great deal less support, fewer members and fewer donations in the future.

7 Most important of all: ask for a reply. And if you don't get one, keep going back until you do. And when you do, send us a copy and we'll publish at least some of them. Or if you're a Benefits and Work member, post the reply in the forum here:

www.benefitsandwork.co.uk/forum?func=showcat&catid=13

If you'd like to contact more than one charity, then members of the Disability Benefits Consortium are worth considering. This is a coalition of charities which "aims to lobby and campaign on welfare benefits as they relate to disabled people." Clearly they are the people who should be running this campaign, rather than Benefits and Work.

You can find the email contact details for all these organisations on this page:

www.benefitsandwork.co.uk/forum?func=view&catid=13&id=10362

Another possibility is the members of the green paper stakeholder panel. There's a list of the members here, though we haven't had time to research email addresses - volunteers to do so would be very welcome:

www.benefitsandwork.co.uk/forum?func=view&catid=13&id=10356

If you want to be getting on with other things rather than waiting for next weeks' email, then there's a few suggestions here:

www.benefitsandwork.co.uk/disability-living-allowance-(dla)/dla-aa-cuts/take-action

Than k you again for signing up to the No More Benefits Cuts campaign. At the time of writing you are one of an astonishing 13,815 people who have done so in less than a week.

You can read more about what's been happening, from RNIB's statement to details of a local campaign in deepest Cornwall, on this page:

Many thanks also to everyone who's been in touch. I do apologise if we haven't replied to your email or returned your call - there have been many more than we could cope with. But we do very much appreciate hearing what people have been doing.

Please feel free to forward or publish this email.

Good luck,

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r3dh3d · 11/08/2009 10:05

Just a quick bump - have emailed Mencap today. Anyone else lobbying?

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HelenMumsnet · 09/08/2009 22:26

PipinJo: we know you've been trying to get in touch with us at MNHQ - and we've been trying to email you. But our emails are bouncing back.

Could you email us at [email protected] and let us know you correct email address please?
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LollipopViolet · 09/08/2009 20:19

Hey, great(!) Now instead of having money to get transport and taxis and things, I'll be forced to rely more on buses and have my independence curbed (I give some DLA to parents for petrol costs to help them out) and wahey, while we're at it lets means test the disabled bus passes too and make it so that it's impossible to get out independently(!)

Gotta love to government, I hope this is some stupid idea that won't actually happen!

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Pixel · 07/08/2009 22:49

Perhaps we should parcel up all the smelly pants/poo-smeared rugs etc, and send them to SS when we need replacements out of our 'personal budgets'...

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PeachyLaPeche · 07/08/2009 16:58

OK my first response from the labour guys:

a very brief email giving me the address of the DWP and telling me to contact them instead.

I might take that as a yes then.......

fabbo PR mateys

Wait and see what the others have in plan, I do know the greens have very interesting thoughts on providing for carers / sahms etc.

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staryeyed · 07/08/2009 14:40

bumping for anyone who hasnt seen this.

I have told everyone I can think of and have checked some of the other forums.

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PeachyLaPeche · 06/08/2009 19:21

Adjust the dcomma use- I missed a few as was MB at the time

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SammyK · 06/08/2009 19:20

Thanks peachy that's great will copy, paste, adjust slightly and send. {cheeky}

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PeachyLaPeche · 06/08/2009 19:14

Dear

I am e-mailing you this link as it was sent to me, and a few people have contacted me scared as to how it may affect their benefits.

The big fear is the DLA factor. A great many of us have no social services input and we would get nothing. My own case is that my eldest has a diagnosis which doesn't qualify for support (Aspergers, although he is aggressive has a statement etc and receives high rate DLA). My third son does qualify but we have been placed on a waiting list for an assessment with no suggested date or promise of any help.

People in the special needs community are very vulnerable to change and to financial issues and as such we need reassurance that we won't be losing the only thing that enables our children to have the support they need.

The link is: www.benefitsandwork.co.uk/news/latest-news/1091-100-days-to-save-dla-a-aa-from-the-axe

With thanks

Clair Peach

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SammyK · 06/08/2009 19:08

Peachy, what are you saying when you contact people? I am tired and can't seem to compose an email of any use!

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PeachyLaPeche · 06/08/2009 18:51

Have e-mailed everyone in my contacts book and a few more (Yeah verily I even tripped onto tory party territory and now need to ask for absolutions )

I ahte these messages- they scare the most vulnerable without actually backing things up

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SammyK · 06/08/2009 18:38

scary I really hope this is just someone's ridiculous idea.

I too am now at home with ASD DS as wrking just wasn't an option any longer. Our disability benefits pay for luxuries like food and heating (heating only on if a couple of jumpers aren't working of course). Washing machine running, pants, etc.

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PeachyLaPeche · 06/08/2009 18:23

I am going to send the link to the aldy at the green party who came on here (have her addy) and Nick Clareke's addy also

see if they can enlighten

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PeachyLaPeche · 06/08/2009 18:22

Amnther one with no SS invcolvement: they claim ds1 isnt disabled and ds3 is on their w2aiting list

Without DLA to cover special diets etc we'll lose the house

However I think WA is right with timings tbh- does sound like a scare story / improbable? hope so

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