Benefit Reviews Causing Stress and Hardship
 Consultants at our
clinics are
receiving a deluge of complex questionnaires about patients being reviewed. Many are worried that they have no idea what to put on the forms that will protect against patients losing benefit.”
PN examines the deeply disturbing events surrounding Disability Living Allowance.
There was a time when life meant life, but long term recipients of Disability Living Allowance (DLA) may have noticed a while back that “life” changed to “indefinite” … and any time soon could end up meaning “not at all”.
The Department of Work and Pensions (DWP) started reviews of DLA awards in November 2007 – the Right Payment Programme samples 12,000 cases (of around 2.5 million people on DLA) a year. According to DWP, this is centred on whether the payment is correct, “focusing on potential underpayments”. If your DLA award was made or reviewed within the last 12 months, you are exempt from RPP review.
The Special Rules Exercise is a different kettle of fish – anyone under 55 years old and awarded DLA more than three years ago under the special rules (a scheme that accelerates awards for people facing terminal illness who have a limited life expectancy, whether or not backed up by a certificate from a doctor on Form DS1500) is liable for review by November 2008.
Improvements in treatment for diseases like cancer and AIDS have resulted in longer and better quality of life for many, so DWP are looking again to see if awards made under this scheme, previously exempt from review because the intention was that you wouldn’t always live long enough to warrant one. Don’t be under any illusion that the focus here is “on potential underpayments”! Since 2006, even special rules claims have been made for a fixed period.
So what happens?
“Customers” of DWP receive a letter from their Disability and Carers Service along with form DBD551 which asks for details of your doctors, illnesses or disabilities and the treatment or help you receive. You are asked to return the form within two weeks and if you don’t bother filling it in your benefit will stop.
If you have more than one illness or disability, list all the conditions and all the treatments on the form (use an extra piece of paper if you need to). Have you got a copy of your original application? If all it said on it was AIDS, and you are now listing other conditions, a full review is likely and they will send out a lengthy set of forms which basically are a reapplication for DLA; the original award will be scrapped and you will probably have to wait for a new claim to be processed.
DWP are under a duty to consider all the evidence available in your case. This will include writing to your doctor(s) and anyone else you mention on the form that can give them information on your current care and mobility situation. Experience thus far is that DWP will only write to your HIV consultant in the first instance.
HIV Docs in a quandary
Consultants at our clinics are receiving a deluge of complex questionnaires about patients being reviewed. Many are worried that they have no idea what to put on the forms that will protect against patients losing benefit. Dr Simon Barton from London’s Chelsea and Westminster Hospital tells PN that he and colleagues are increasingly prescribing anti-depressants to patients worried about losing their DLA. Dr John Walsh at St. Mary’s Hospital recently told his clinic’s patients’ forum “I’m not sure what specifically to do about it other than ensuring that clinicians discuss with their patients their actual rather than perceived level of need.”
As reported in PN issue 136, research at Kings College London showed that HIV physicians only hear around a third of a patient’s problems. Patients rarely discuss their feelings with doctors, so there’s no record that they may be feeling worried, depressed or suffering pain. It seems fair for PN to suggest that doctors should avoid filling in these forms until they’ve had the fullest discussion with the patient.
Many people are worried
Lisa Power, THT’s Corporate Head of Policy and Public Affairs, a member of DWP’s Disability and Carers Service Advisory Forum, reports that THT Direct are “in the thick of it” and handling lots of calls on the helpline. However, callers to 0845 12 21 200 report they are less than pleased with the help offered. One of them taped what was said - “Unfortunately, THT doesn’t really assist in terms of what could be helpful to put in the form or even helping people to go along with the form”. The only help was a referral to a nearby HIV organisation and a suggestion to contact the Citizens Advice Bureau. The call ended with a request for a date of birth, “we need it for our funding”.
DLA is designed to cover the extra cost of being disabled, of needing care and attention because of what you can’t do, to help with things like getting around if you have problems walking. There’s nothing to say you must use the DLA money to buy care, or pay for a car or taxi use, and we know many people use it to afford a better diet, extra heating, whatever. But people who rely on this money are scared that losing it forces them to consider a life of poverty, misery or being forced to look at whether they could put what energy they have into working when they know they aren’t up to it. Assuming of course they can get a job as many will have been out of work a long time and probably getting on in years too.
There is no technical link between receipt of DLA and being in work, but if a DLA claimant suddenly gets a job and comes off incapacity benefit, it can trigger a review if the DWP think your circumstances have changed.
DWP make mistakes
Everybody makes mistakes, DWP adjudicators included. Past experience with DWP over DLA shows that cases turned down are often reinstated on appeal. This was definitely the case in 1998/9 when the discredited Benefits Integrity Project, one of the final contributions of the last Conservative government but carried out under then “new” Labour, reviewed 55,000 DLA claims, only unearthed 50 potential cases of fraud and ended up costing far more than it had been intended to save.
Then what?
If you get reviewed and think that the decision on your benefit is wrong, ask DWP to review the decision straight away. This is your opportunity to make sure they are looking at all the evidence and you can get other doctors or therapists to submit reports on your behalf. Your case is then looked at by someone else. And if all else fails, appeal.
If you appeal, make sure you ask for an oral hearing – where you get the chance to speak yourself instead of just allowing the paperwork to be looked at yet again – it should be held near to where you live and again the experience is that oral appeals are more successful than document only versions. If worried you can’t deal with it on your own, get help from an experienced welfare rights advisor.
If you lose your DLA care component, you may no longer qualify for other benefits or tax credits, plus if you receive Incapacity Benefit you will lose your exemption from the “personal capability assessment”.
Places to go for more information and advice
Your local HIV organisation if you have one.
Citizen’s Advice Bureau or local disability organisation.
On the web
Download a current DLA application form from the DWP here
www.dwp.gov.uk
HIV Benefits website and blog (loads of useful links and tips) www.hivbenefits.co.uk/
Benefits and Work
www.benefitsandwork.co.uk (well worth the £16.50 subscription)
Disability Alliance –
www.disabilityalliance.org
George House Trust - www.ght.org.uk
THT – www.tht.org.uk/
DWP – Corporate Medical Group, A to Z of medical conditions website
www.dwp.gov.uk. PN
DWP’s own, outdated, Disability Handbook makes it clear that many people…
•“are fiercely independent and will not admit even to themselves the full extent of their care and mobility needs.”
•“do not appreciate their level of need.”
•“who live alone are forced to carry out day-to-day tasks that should, ideally, be done for them.”
And it goes on “… it may not be possible to get a true picture of the person’s needs without additional reports from professionals.”
All DWP want to know is whether you still meet the criteria for care and mobility allowances awarded many years ago; if they think your circumstances have changed, you will get a bigger form to fill in so that the whole award is reviewed.
If your DLA is being reviewed, don’t panic, but reassess how you are today compared to when you first claimed the benefit. You may have good days and bad days - overall just how bad are you these days? Maybe keep a diary of how you get along, what care needs you have or what you can’t do (and why) because you are disabled. Don’t leave things out just because you’ve got used to something, like pain, or you’ve developed coping strategies - what are you like without the pain killers or the techniques you’ve worked out to carry on living? Write it down, don’t take it for granted that anyone at DWP will understand that you cope regardless.
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