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Lizzie2

Disability Living Allowance debate

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If you were such a good natured person, OBL, you wouldn't insist on replying to, and picking holes in, my posts on this matter. To answer one of your comments "there is no evidence that 'many of us do not agree with you'". Perhaps people don't post on here because you can be a bit of a bully?

Anyway, please take a look at this website ~ http://janeyoung.me.uk/2012/01/19/thousands-could-lose-motability-vehicles/

You'll see that it's written by someone who is more qualified to comment than either of us ... and they agree with my point of view.

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Lizzie2... it's been a couple of months, I hope you're OK, that's quite a time lag between visits... I'm the same, I dip in and out, but seriously, I hope there's not been any bad reason you haven't been around, I've missed you.

If the ratings and criteria have changed making payments more difficult to get for those in real need it's wrong. The link you added above shows some scoring information, is there a comparison anywhere between what these ratings and criteria were under DLA? Aside from the argument about whether assessments are right or wrong, I think if the criteria have moved, so that for example, to be simplistic, you now need to be more immobile, or disabled, than previously to get your payments, that's not what has been portrayed by the government ministers.

I would like to invite people on here to get enthused about what Lizzie2 is saying, this is pretty critical stuff to many people. Let's hear some real life stories of people being/going to be let down by PIP where before they were/are helped by DLA.

I'm not a bully, far from it, please post and I'll give you a hug.... oh, no, that'll put people off too... sorry...

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OMG....I am in shock......lol

There are quite a few stories on other sites of people who have been reassessed scoring 0 points under the new work assessments and to get the equivalent rate if PIP that means you can still join the Motability car scheme you have to be a permanent wheelchair user. Rules out a lot of amputees. People are having to hand their cars back.

Some of us have been very proactive in trying to highlight the inadequacy of the new scheme, writing to MP's, house of commons, replying to questionnaires etc, but it seems to no avail. We need to stand as one on this....pardon the pun.

Sue us around somewhere....hope she drops in soon.

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Me too Lynne .... even us bilaterals who automatically got DLA it seems may not even qualify for PIP ..... it does feel like the Gov do just not want to hear and just want to save money ... though this is shortlived thinking ... because people like me are going to go from being independent to pretty much housebound and dependent. It doesn't bare thinking about, so must admit, like you having been very procactive in highlighting the inadequacy of the scheme, I am now trying not to think about what the outcome may be.

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All good stuff Lynne and Ann... needs moe, I'm guessing places like this just aren't frequented enough to get any weight of momentum going... what I think would really help is a direct comparison between the specific criteria that were used to approve DLA, and those which approve PIPs. Then your average person in the street can see the difference. It's always the same, hit a minority and the majority are apathetic... make it clear to all and the voices against might get louder...

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OMG....I am in shock......lol

Probably not as much as me ... (Are you feeling alright OBL? :wink: )

Seriously though, I hope you're beginning to see why I've been trying to get the message across now, OBL? PIP is going to be exceptionally difficult to get, particularly for amputees.

Whilst I could find PIP descriptors online, I could only find a DLA application form - http://www.dwp.gov.uk/advisers/claimforms/dla1a_adult_print.pdf It's a 55 page book that you have to fill in ... that in itself is enough to put most people off applying (I personally wouldn't bother, if I didn't need it).

Since I last posted I've attended a meeting in Paliament about PIP. To be perfectly honest, it was disappointing (as they'd already made their minds up) and shocking (as the policy makers didn't appear to have much knowledge about the different types of disability and how they impact on peoples' lives). The only thing they said they could do was to 'educate' the assessors. And, that's all very well, but the assessors are employed by private contractors (e.g. Atos), who are given financial incentives (by government) to reduce the number of claimants ... and the private contractors, in turn, offer their assessors financial incentives to reduce the number of claimants. It is absolutely dreadful IMHO as, as Ann said, it doesn't help people to lead independent lives! In addition, it will end up costing the country more as more and more people with severe disabilities (e.g. bilateral amputees) will have to stop work and become totally dependent on benefits.

To qualify for the enhanced mobility award (which will qualify you for a a car from Motability) you need to use a wheelchair to mobilise for over 50% of the time in a 6 month period. There are also various passported benefits that go with the enhanced award (e.g. automatic entitlement to a Blue Badge).

When I tell people who know me (offline, as opposed to online) that I'm at risk of losing my car, without exception, they can't believe it! As they know how much I struggle, how my mobility is so variable, that I often have to cancel things as my legs are exceptionally painful (I'm currently battling with skin fissures that get infected and that I have to walk on) and how tired I get. When I raised my concerns with someone in Parliament (with who I have recently been communicating about PIP) about my concerns, they simply said '... if you are 'downgraded' then appeal.' I couldn't believe that someone in that position could be quite so naive!

I've experienced the Mobility Allowance appeals process ... it's not a good place to be and it takes time. People will end up losing their Motability cars during the appeals process and their rather sizeable (especially if you need an automatic gearbox) deposit.

I have tried to get the message across ... and so have the Limbless Association (believe it or not, they really have!) ... but, the politicians and policy makers are not listening as they have their own agendas (namely to save money).

All I can suggest is people lobby their MP and, more importantly, they tell as many people as possible. The more people who know about the future effects of this dreadful benefit, the better.

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Quick update on this topic ...

It seems that injured ex-servicemen are exempt from reassessments for Disability Living Allowance and benefit cuts - http://bfbs.com/news/uk/injured-troops-safe-benefit-cuts-57390.html

Injured ex-servicemen (who did not opt for injury, but did opt to become servicemen) have war pensions and DLA ... priority treatment, access to newly developed prosthetic components and access to excellent rehab and funding from the likes of H4H.

So, what do the majority of civilians (who did not have a choice) have? Mostly, access to prosthetic treatment that is substandard, limited choice of prosthetic components, poor prosthetic rehab. They also have to undergo the stress of reassessment and (sometimes degrading) examinations by people who do not understand their condition.

Nice to see there's some parity in the world! :angry:

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I know this is a sensitive subject, and I live in the US so it doesn't really afftect me, but I have a hard time with criticism regarding military veterans receiving above average care. I thank God there are people who will volunteer to put themselves in harms way for me and mine and I believe that, as a society, we should shower them with whatever they need upon their return to civilian life - especially if they have been permanently injured.

However, I also believe there are a lot of people who choose to sit home on their behinds instead of being productive members of society and I do not think we should enable that behavior. People who are trying to get out and work or otherwise contribute should be assisted in doing so and Governments need to look elsewhere for money saving measures. Perhaps they could look much closer to home such as their own salaries, benefits and staff for a start.

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Just to explain a bit Disability Living Allowance isn't a benefit as such to replace earnings, its an allowance, graded to the disability, to help with the extra cost of living with that disability and help keep people independent. Its not enough to live on, but helps financially with support for people who can't walk very far or can't cook their own meals, or have learning disability or whatever, and it is given to people who are working also, and has been in place in the UK since the 1970's. Certain conditions including those who had two limbs or more missing were automatically given the higher rate mobility component, single amputees or other conditions were assessed and granted on need. The reforms are changing things and DLA is being replaced by PIP.

I think what has upset a lot of people is not that the veterans shouldn't get what they are getting , most of us fully support them. Its more really the way civilian amputees are being treated and thought of, and this week there seemed to be almost a media attack on us. On Tuesday, a Government Minister said that using a prosthetic limb did not undermine mobilty and that many amputees would no longer be entitled to DLA, this was followed by an announcement from the PM that Veteran amputees would receive DLA or the new PIP automatically for life. What came across was that civilians didn't need it, but veterans did. This is happening against the background of what Lizzie2 is saying about civilian amps struggling with the services they receive, lack of employment opps, and also of course the general cuts that are happening throughout the country for everyone.

The problem is that most of our gov ministers and probably the general public are quite misinformed over the situation and most don't realize the situation for civilian amps., unless they personally know someone and the media talks constantly about the 'technology' that allows amputees to do virtually anything, going alongside media clips of veterans who are doing amazing things on their prosthetics, and everyone seems to assume that civilian amps are able to achieve these levels too. However there are differences in levels of care here, the veterans are given a long period of inpatient specialist rehab, and high spec tech limbs ... which I know doesn't necessarily 'fix' everything, but for the main their care is streamlined, quick access to things that don't leave them waiting weeks or months for appointments, new sockets, components, etc., which is often the case for civilians, and this all helps to allow them reach their full potential and be very active, making it much easier for them to live independent lives and obtain employment .... nothing wrong in this, in fact this is how things used to be in a way for civilians but not always the case now and some, particularly complex amps, have to fight long and hard to get the kind of input they need because really the system has got very overloaded, there are many more amputees nowadays, which is good because people are often surviving things they didn't previously, but the resources haven't increased to meet this demand and I think our NHS system is struggling a bit to cope.

I know its all political and media spin but to me it does seem a bit unjust.

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That's really well written ann... couldn't put it better myself, but then that's no surpise to anyone :rolleyes:

Totally agree! :smile:

@kitkat - Both my grandfathers were in the regular army and one or two of my cousins have been/are in the army. I don't have a problem with them getting the treatment they require. However, I do have a problem when military amps are portrayed, in the press, as heroes, whilst civilians amps are portrayed as scroungers. Amputation is very hard for everyone and there should IMHO be some parity.

Disability Living Allowance is given, as Ann said, to pay for disability related expenses. It was originally only paid to people with disabilities who were of working age, to keep them in work ... so, they didn't have to sit at home being unproductive members of society ... so they could pay taxes and contribute.

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I don't fully understand because it is such a different system from the US, but I completely agree with helping people with any disability to resume or continue working and to be able to participatie in recreational activiities (there's more to life than just work). I also agree that amputees should not be portrayed in a negative light. None of us chose this path but all of us, civilian or military, have to travel it the same way so there should be parity of treatment options. It is laughable that people think a prosthesis gives the same level of function as a normal leg. I am very active and can mostly do whatever I want but it is with much more effort and there is a price to be paid in terms of overuse of the normal leg, back strain, etc. If they think a fake leg makes you "whole" I encourage them to give it a go.

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Like and agree with Kitkat's / Lizzie's last and the previous is all very interesting.

I am above knee RHS with a weak left knee. On good days I am very active. On bad days due to stump issues, crutches only. On very bad days bum shuffling around the house is all I can do. My car is a adapted; it is essential.

I want to work while I can. If and when my left knee gives up that will change.

Whilst I hospital there were 2 very significant role models one good the other bad.

GOOD: Consultant anesthetist above knee for 25 years and dodgy other leg - 50-60hospital working week, + a batch of hobbies. A full life at nudging 60.

BAD: a 34 year old relative of a ward nurse, 3 years post work injury; below knee amputation , never planning on working again with insurance and state payouts.

on another front, abuse of Blue Badges really winds me up!!!

best

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Ann - an excellent post.

Whilst I have the utmost admiration for the high achievers who are frequently featured in the news and on tv - it does lead a lot of people to assume that all amputees have the same levels of mobility and that therefore you do not need extra help when unfortunately for many this is not the case.

For the government this is purely a money issue and they are not looking at quality of life - I work with the elderly and it is the same for many older people, cost cutting measures are continually eroding their quality of life due to inadequate provision.

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Like and agree with Kitkat's / Lizzie's last and the previous is all very interesting.

I am above knee RHS with a weak left knee. On good days I am very active. On bad days due to stump issues, crutches only. On very bad days bum shuffling around the house is all I can do. My car is a adapted; it is essential.

I want to work while I can. If and when my left knee gives up that will change.

Whilst I hospital there were 2 very significant role models one good the other bad.

GOOD: Consultant anesthetist above knee for 25 years and dodgy other leg - 50-60hospital working week, + a batch of hobbies. A full life at nudging 60.

BAD: a 34 year old relative of a ward nurse, 3 years post work injury; below knee amputation , never planning on working again with insurance and state payouts.

I'm not making excuses for anyone, but please, before you judge anyone, remember two things -

Money makes a big difference. The consultant anaesthetist will not only be able to effectively treat any PLP's he has, but he will have enough money to employ people to clean and 'run around' after him. I work (part-time), but I'm not proud and so openly admit that I need people to help me, especially after I've been to work.

And, some people will adjust more readily to the emotional impact of an amputation. It's be estimated that 75% of amputees have some sort of emotional/depressive illness.

Walk a mile in my shoes, so they say. :smile:

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I have recently become a bilateral amputee. My first amputation was April 2011 and I received highest mobility and lowest care awards.

In March this year I applied again and was given no award!! After ringing I decided to appeal. It took ages and in May this year I ended up in hospital with the outcome being an amputation of my other leg on 22 June.

When I came out of hospital I rang DWP and told them of my change in circumstances. The guy checked the status of my appeal and told me I hadn't won it!

Filled in the pages of the booklet and sent it off. A couple of weeks ago I got a letter stating I was not to be awarded anything again even though I was bilateral!!

I immediately rang them and asked why I wasn't awarded anything. The guy couldn't understand why not.

The ridiculous thing was the reason stated ' we have not given you award because on 15th January 2012 we invisidge your needs will change and you will not require this benefit'!!!

Ha ha! I asked him what was going to happen on 15th Jan? Was I suddenly going to grow my legs back?

Eventually he put me through to someone at Liverpool and I went through it all again. She also couldn't understand what had happened so promised to look into it and call me back.

She rang me the following day and said had I stated ony form that I was bilateral!!! At this point I nearly screamed!! What a stupid question!

A few days later she rang again to say that I had been granted highest mobility for life and medium care for 2 years to be reassessed. 'why then did I receive a letter a few days ago saying I hadn't got anything?' I asked. 'oh we sorry about that but the person dealing with your claim MADE A MISTAKE' she answered. Unbelievable!!!!!!!

I wrote to complain but have never had a reply!

Luckily i took it further but an elderly person may not have had the inclination to investigate it and may have lost out on money they are entitled to.

Always query your claim if you're not happy. Your claim may have been dealt with by the same person who dealt with mine!

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HI, I AM REALLY,sorry shoutinh

g!, lucky in that i have been able to keep my allowance, i was 66 this year so i keep my entitlement, but i think it is terrible that people worse off than me, will have to manage without it, we must keep campaigning for this

cheers maggie

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Ages since I have been here... how did everyone do as a result of the changes? Did the worst happen?

Hello OBL Nice to hear from you,

As for the changes I couldn’t really answer as I don’t know any amputees who get it , as for some others I know who get various benefits they seem to be waiting .

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Ages since I have been here... how did everyone do as a result of the changes? Did the worst happen?

Hello OBL Nice to hear from you,

As for the changes I couldn’t really answer as I don’t know any amputees who get it , as for some others I know who get various benefits they seem to be waiting .

Hi Mick,

Long time no type... nice to hear from you and thanks for the response!

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No problem, it is nice to hear from you again, its been very quiet on here since it came back on line , I dont know whats happened to the other posters , I think that they have moved onto Facebook or some other sites that I dont know about , saying that I dont really like Facebook that much .

You will be pleased to know that I have been giving your knee (kx06) some serious work over the last year or so.

So much so I wore it to total destruction, (my fault I should have got back to the limb centre months before when the first little thing started to play up) but I didnt expect the ever so long wait for an appointment, still its fixed again and I have a full winter program of hikes line up

its been submerged in peaty bogs buried in snowdrifts, been used to cross streams more times that I care to count but its taken me to some wonderful places and views that I never thought I would get to see so thanks mate I know that you played a part in getting it into use .

Just realised that is open for everyone to see .duhhhhhhhhhhhhhhh

Take care

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Ages since I have been here... how did everyone do as a result of the changes? Did the worst happen?

Sorry, I don't come on here often ...

Yes, things will be very difficult for single lower limb amps, OBL. There is currently a 20m rule - if you can walk 20m for 50% of the time in a 6 month period, you won't eligable for the higher rate PIP.

For bilateral lower limb amps, there is some respite, as In the PIP definitions it says that 'to stand' means to have at least one biological foot on the floor...so no bilateral lower limb amp will be able to stand (for the purposes of PIP) and they will, therefore, be able to claim the higher rate of PIP.

The new benefit will affect.amps and people with neurological conditions such a Parkinsons, MS and CP. I'm seriously unimpressed and worry that there will be a lot more people with disabilities who will become housebound.

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Just rediscovered this forum! not very busy then, I guess I'm not the only one that forgot about it!

Mick, your post is welcome! ;o)

L2... I've not heard a lot since it all started, no great tales of woe, but then I guess it doesn't make for very interesting news...

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To be honest, I don't think the DLA/PIP changes have hit too many existent claimants yet, I think PIP is being assessed for new claimants currently and being phased in gradually, by location for existing claimants over the next few years.

I imagine the changes will dramatically affect the lives of people with disabilities in the UK, including amputees, many of who do currently claim DLA, with bilateral amputees losing their automatic entitlement and those who are successful in being able to continue to claim who are currently under 65 years of age will lose their entitlement when they reach that age.

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