disability living allowance

[Osem]

I can' speak for anyone else and don't expect those not in a sitituation like ours to understand but I can say that when we've filled out the DLA forms we've always found it a very painful and emotionally draining experience, made worse by the fact that we're acting on behalf of our child and therefore responsible for securing an entitlement he will come to rely on in time.

Describing in great (often repetitious), graphic, detail all the physical/mental problems and limitations of a vulnerable loved one is an extremely depressing and taxing affair. As parents of a disabled child we try to remain positive at all times, knowing full well that if we can't look after him the only option will be him being taken into care - something which fills us with dread! At the same time however, documenting all the things we have to deal with on a daily basis is extremely depressing and upsetting. It also forces you to acknowledge all those painful emotional issues and realities you try to bury deep inside the back of your mind in order to make the load bearable. I'll be honest and say that at times we've both felt we'd be unable to cope with his needs as he grows up... That's a horrendous thought believe me!

When we go to see his paediatrician we see a file several inches thick, full of test results, medical reports/correspondence relating to all his problems. These problems are not the subject of debate, they are medical fact! His annual school reviews are the same - there is no doubt about the extent of his needs. His whole life seems to have been a series of serious medical and other problems and when we can bear to think about it we know that what the future holds is more of the same. Frankly, living with this sort of thing is hard enough without having to fill out onerous DLA forms which greatly test the will of genuine claimants like us and make us feel we're fighting to justify what little help our loved ones get. Frankly we often feel like we can't carry on fighting but we have no choice do we....

In any system of welfare there will be those who cynically and selfishly abuse that system. People like us aren't asking for carte blanche to do and claim what we want, we're just asking not to have our considerable burden added to and not to be made to feel like we're spongers, having to justify everything - as if there was any doubt about the numerous problems we already have to live through and cope with.....

Osem

I know it probably won't make you feel any better, but you are not alone in your feelings about filling in the form.

There was a research paper on this - Linky and it repeats what you have said (on page 6)

described how detailing the daily impact of the situation with brutal honesty could feel very negative. This went against the usual mindset of ‘looking on the bright side’. This was particularly difficult for parents completing forms on behalf of children.

Have you had any help filling in the forms? I don't know the details of your son's disability, but various disablity support organisations have support workers, who deal with the DCS on a day to day basis, and know what is required to fill in the form (as they do it frequently), and more importantly, what "language" to use.

As the report linked to above states (page 3)

Professional advisers also believed that customers claiming without professional help would find the process very difficult. These perceptions were consistent amongst all the professional advisers who took part in the group discussions, and the findings of the customer element of this research largely endorse these experiences.
An area in which professional adviser perceptions differed from customers was in relation to the role of the General Practitioner (GP). Whereas customers believed that their GP was the most appropriate medical spokesperson to provide information about their condition and how it affected them, professional advisers felt that a minority of GPs provided inappropriate or ill-considered information to DCS.

Well if the whole lot gets handed over to social services as set out in the green paper this all may well become moot..as social services are notorious for being understaffed and underfunded and at times very ad hoc in their arrangements I forsee a lot of people slipping between the cracks...

[Osem]

Originally Posted by foreverwar

Osem

I know it probably won't make you feel any better, but you are not alone in your feelings about filling in the form.

There was a research paper on this - Linky and it repeats what you have said (on page 6)


Have you had any help filling in the forms? I don't know the details of your son's disability, but various disablity support organisations have support workers, who deal with the DCS on a day to day basis, and know what is required to fill in the form (as they do it frequently), and more importantly, what "language" to use.

As the report linked to above states (page 3)

Yes we were lucky to get help when we filled out the forms and were very grateful for it. Due to the nature of our son's special school we come across very many parents in exactly the same position and to be honest their lives are quite difficult enough without having what is the trauma of claiming DLA loaded on top. We also know that the complex nature of the process also means that some of the awards are more 'appropriate' than others, the losers often being those who had no help with the claim process and simply didn't make the best job of filling out the forms for whatever reason.

Of course were it so daunting a prospect for the benefit fraudster we'd all be a lot happier but for those feigning illness/disability it's all just a callous deceit not their entire soul destroying, strength sapping day to day experience.

I think you'll find if social services end up handling everything Maggy MOST people will fall through the cracks. Hell in my home town they can't even safeguard the welfare of at risk kids and i am expected to have faith and confidence in them dealing effectively with my daily needs, yeah right. This is as far as i am concerned the disgusting start of a far more wide ranging and disgusting campaign against benefit claimants that this government would love to go on. Only the support of the majority of the british public turning round and saying "no you get your hands off and actually help the genuine" will stop this bunch of lowlifes and their personal agenda. How i wish we could have a government of any persuasion that truly represented the fair tolerent approach that most british people have and is it any wonder that as more and more governments come and go and degrade those qualities that we seem to have a growing number of normal people also representing those qualities less in our communities.

[TakeCare]

I usually only visit this forum when in need of help so was not aware this thread was on the go.

As part of a group of online family carers,we have been campaigning over the last few months to protect the disability benefits. I will post the links but not sure if they are allowed so understand if mods need remove them.

Campaign to protect benefits

covers several months so its a lengthy read over many pages.Comments have been added along the way too. Feel free to add your own.

Also, as regards the problems with the new ESA take a look at this , again a lengthy read

Last but not least there are a group of people fighting against some of the measures passed in the Welfare Reform bill. A few details are shared here

Hope this of use to some of you.

[Flyboy]

It would help, TakeCare, if you briefly explained how the new bill is going to affect claimants with mental health issues.

[TakeCare]

Hi Flyboy,

Am I allowed to add these links? Not sure of the protocol here.

Hope this helps.I cover mostly the disability benefits but asked someone I work alongside to do this.Just holler if any more questions.Its not just those with mental health problems but some with severe autism too.

PDF file on this link from CAB that is well worth a read

This is re Cancer patients too

ESA

I’ll try to explain ESA a bit better. To campaign to improve it is so hard basically because no one understands it and it confuses people.

The principle is that everyone should be helped back to work. Now that would be a good principle if you said everyone can have maximum help to get back to work if this is what they want. It is a great idea that all people, however ill can try and get back to work if they want to.

But the government have linked the help to the bullying. You can’t have help without accepting sanctions. This linkage is artificial and unnecessary. It’s because they don’t have any new ideas to make it really possible to get sick people in to real work so they are making it all a problem in the mind of the sick person and giving them CBT to get better motivated. It’s not in their mind – they face real problems.

The government tell the charities that the private contractors won’t bother to help people unless they have the control of sanctions over them. They imagine people coming along all enthusiastic and then backing down when it gets too hard. Probably and hopefully so. Sick people should have the courage to have a go and the safety of knowing they can back out. Private contractors can’t be bothered with this. Too frustrating for them. Most of them used to be salesman. Imagine selling double glazing and then people having second thoughts. Slap a sanction on them.

Obviously the sick person under this system would be far better claiming not to be able to do or try anything. It just isn’t safe to take a risk and sign up if you might not be strong enough to follow through.

So when it gets to the crunch – who is to decide if the sick person wants to back off from something if they are not trying hard enough? The government gives all the discretion and decision making to bureaucrats. This decision has to be returned to the sick person. What is the point of giving them dignity and control over care packages and then bullying them in to back to work activity they feel they can’t cope with.

[Flyboy]

TakeCare, first of all the links are fine. I think the only objections are to links of an inappropriate nature or blatant advertising for commercial gain.

Secondly, is there any information you can give us on what the differences are between the old system and the new and why the new system is a bad thing?

[lisajones]

Originally Posted by Flyboy

It would help, TakeCare, if you briefly explained how the new bill is going to affect claimants with mental health issues.

Perhaps I can help here. I manage the blog on mental health and ESA that TakeCare posted.

What do you want to know? Ask any questions and I'll try and answer. ESA will replace IB for all sick or disabled people as it comes on line. At the moment it is only for new applicants so there isn't much experience of it.

The whole philosophy of ESA is different from IB. It's no good your own health profesionals or doctor saying you are too sick to work. The only people accepted as unfit to work are people with less than six months to live or undergoing current chemo or radio therapy. There are very few other exceptions.

Every one else has to undertake activity to get a job. The theory is that you will have a combination of support and conditionality. Conditionality means threats and bullying and sanctions of loss of benefits. This is done by DWP officials or their private contractors and not a court and there is a question as to whether it is against Human Rights.

We argue that Mental Health is a special case and just as people with mental health problems get special treatment under the law - they should have it in this pseudo legal process. Baroness Meacher makes the case brilliantly. She says that you can't ever fairly sanction someone with a mental illness for behaviour because it may always be due to the illness.

They did accept some of our arguments and agreed that if someone with a severe mental illness is sanctioned for not turning up or something like that then their illness is a 'good cause' to put at their appeal. But that just isn't good enough. Peopel with mental illness do not need to be threatened and sanctioned and then have to appeal. They may have paranoia.

Basically every one with any kind of illness has to go to meetings at the DWP and agree programs of back to work activity. If they fall down on them they get sanctioned.

We think back to work help is wonderful but not under threat. We don't think this is fair in 2009 and we think all people with serious illness should have the choices about whether they accept back to work help or not returned to them as individuals.

We want to get a campaign together on this supported by the CAB and all the disability charities. If you are involved with a disability charity please e-mail them and ask them where they stand on the conditionality and therefore bullying of the most seriously sick that they are supposed to represent.

[mrmistoffelees]

Originally Posted by lisajones

Perhaps I can help here. I manage the blog on mental health and ESA that TakeCare posted.

What do you want to know? Ask any questions and I'll try and answer. ESA will replace IB for all sick or disabled people as it comes on line. At the moment it is only for new applicants so there isn't much experience of it.

The whole philosophy of ESA is different from IB. It's no good your own health profesionals or doctor saying you are too sick to work. The only people accepted as unfit to work are people with less than six months to live or undergoing current chemo or radio therapy. There are very few other exceptions.

Every one else has to undertake activity to get a job. The theory is that you will have a combination of support and conditionality. Conditionality means threats and bullying and sanctions of loss of benefits. This is done by DWP officials or their private contractors and not a court and there is a question as to whether it is against Human Rights.

We argue that Mental Health is a special case and just as people with mental health problems get special treatment under the law - they should have it in this pseudo legal process. Baroness Meacher makes the case brilliantly. She says that you can't ever fairly sanction someone with a mental illness for behaviour because it may always be due to the illness.

They did accept some of our arguments and agreed that if someone with a severe mental illness is sanctioned for not turning up or something like that then their illness is a 'good cause' to put at their appeal. But that just isn't good enough. Peopel with mental illness do not need to be threatened and sanctioned and then have to appeal. They may have paranoia.

Basically every one with any kind of illness has to go to meetings at the DWP and agree programs of back to work activity. If they fall down on them they get sanctioned.

We think back to work help is wonderful but not under threat. We don't think this is fair in 2009 and we think all people with serious illness should have the choices about whether they accept back to work help or not returned to them as individuals.

We want to get a campaign together on this supported by the CAB and all the disability charities. If you are involved with a disability charity please e-mail them and ask them where they stand on the conditionality and therefore bullying of the most seriously sick that they are supposed to represent.

Are you classing depression (be it reactive or other) as part of your mental illness portfolio ?

Just to make you aware the above is a leading question.

A very close friend of mine's wife is heavily involved with ESA claimants (works at DWP) and having read this thread it's rather sad how many people would prefer to cast aspersions as to actually know the facts. (Not that I claim to know all of them but I can find things out from a DWP point if people want to know)

[lisajones]

This is a very leading question.

The government are determined to halve the number of people on sickness benefit and to make life unbearable for the rest unless they go to work.

Our campaign has been to protect people with the severe and enduring mental illnesses of schizophrenia and bi polar and people with very severe physical illness. We have concentrated on them because we think the case for allowing them to be in charge of the decisions about their own lives is so obvious and shouldn't even need to be made.

We aren't ignoring all the other less severe or more transitory illnesses because we agree they should be bullied. Just that as the public doesn't understand the Welfare Reforms at all is seems best to start with an easy case.

The only new thing in the Welfare Reforms is pressure/sanctions/fear/psychological warfare/ threats and bullying. There is no new magic help with problems.

I don't think any one should be treated like this. But a lot of people are cheering the government on and telling them to go out and catch all these mythical scroungers and cheats.

Most people who get an illness get perfectly natural reactive anxiety and depression. The government think CBT and/or pressure will help here. Where and if any fear and pressure is helpful and where it is counter productive is a matter far too complex for me or I suspect the government and the DWP. My instinct is completely against it. Does pressure ever help with depression? I just don't know. I would be happy to join a working group but I can't make the case myself.

Whereas the case against pressurising very sick people makes itself so that is where we are starting.

[mrmistoffelees]

Originally Posted by lisajones

This is a very leading question.

The government are determined to halve the number of people on sickness benefit and to make life unbearable for the rest unless they go to work.

Our campaign has been to protect people with the severe and enduring mental illnesses of schizophrenia and bi polar and people with very severe physical illness. We have concentrated on them because we think the case for allowing them to be in charge of the decisions about their own lives is so obvious and shouldn't even need to be made.

We aren't ignoring all the other less severe or more transitory illnesses because we agree they should be bullied. Just that as the public doesn't understand the Welfare Reforms at all is seems best to start with an easy case.

The only new thing in the Welfare Reforms is pressure/sanctions/fear/psychological warfare/ threats and bullying. There is no new magic help with problems.

I don't think any one should be treated like this. But a lot of people are cheering the government on and telling them to go out and catch all these mythical scroungers and cheats.

Most people who get an illness get perfectly natural reactive anxiety and depression. The government think CBT and/or pressure will help here. Where and if any fear and pressure is helpful and where it is counter productive is a matter far too complex for me or I suspect the government and the DWP. My instinct is completely against it. Does pressure ever help with depression? I just don't know. I would be happy to join a working group but I can't make the case myself.

Whereas the case against pressurising very sick people makes itself so that is where we are starting.

1)That's very nice, but you haven't actually answered my question so I will ask again.

Does your organisation class reactive or otherwise depression as part of the mental illness portfolio?

2) Please provide the statistics that prove that contraction of an illness leads to reactive depression in the 'most' part. Otherwise that's pure conjecture and speculation on your part

3) Perhaps you would like to explain why so many people we're on the old IB to the people of this forum. Hence now why the current government has introduced this process. I'll lead you into it by saying that it's political rather than medical.

4) 'Just that as the public doesn't understand the Welfare Reforms at all' Based on your last two posts I would say that IF the general public has a poor knowledge of the process then your scaremongering and general lack of knowlege on the subject is complicit in this.

5) 'mythical scroungers and cheats.' And you're basing this sweeping statement on what figures exactly?

It's people such as yourself who do more damage than good.

[Raistlin]

Ok, let's keep this nice and friendly shall we?

[lisajones]

Sorry you feel like that.