Stop the Abolition of DLA

[Glitterknickaz]

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.

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

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 ???

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!

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!

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?

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.

Oh mouseface that's such a great metaphor. What a lovely friend.

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.

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.

And I have enough anger for two posts!

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.

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

Here, have one of these but don't tell anyone. {{{{hug}}}}

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

Jux, I could have written your post. Right down to the last line.

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.

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/

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

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.

Sorry, epic rant. Tired, in pain and hungry!

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?

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 ? 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.

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 ".

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:)

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?

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.