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Terminally ill children & adults will be misled until September - DWP

10 March 2006

Benefits and Work has had an astonishing response about two serious errors in the current online Disability Living Allowance (DLA) claim packs. (See: DWP breaks word to sick and terminally ill). One error deprives terminally ill children of up to £43.50 a week mobility payments whilst the other could discourage terminally ill adults from claiming DLA at all. The DWP say that 'hopefully' the issues will be addressed in time for the September 2006 versions of the packs, even though one correction requires just a single digit to be changed in the online pack.

Children
Benefits and Work discovered the errors in the course of updating our guides to the DLA claim packs to take account of changes made in December 2005. Both errors relate to the Special Rules under which claimants whose death can reasonably be expected within six months are automatically awarded the highest rate of the care component. As a result terminally ill claimants do not need to fill out any part of the claim pack relating to care needs, but still need to complete the pages relating to problems with walking if they wish to claim the mobility component.

In the guidance notes relating to the special rules for terminally ill children, claimants are told that 'If the child needs help with getting around, fill in page 1 to page 5. Then fill in About the child's condition on page 28 . . ." Unfortunately, the pages relating to the mobility component are numbers 6 & 7, so anyone following the guidance will fail to give any information about their child's mobility problems and miss out an award of up to £42.30 a week. For the family of a terminally ill child, who may have suffered a drastic drop in income as a result of their caring responsibilities, this is a huge loss. Sadly, few families in such circumstances are likely to have the time or emotional strength to challenge the decision when they discover they have not been awarded the mobility component.

Yet in this case the error is only in the online form. The paper version sent out by the DWP has the correct numbers in it. It would take any mildly competent person perhaps three minutes to change the number and republish the online pack. Nonetheless, it will take the DWP 6 months to get round to ensuring that the families of terminally ill children get the benefits they are entitled to.

Adults
In the old pre-December claim pack the notes on the Special Rules clearly explained that you did not need to complete any of what was then section 2 unless you had problems with mobility, in which case there were just two pages you had to complete. In the new claim pack terminally ill claimants are simply told "Answer all the questions that apply to you".

It seems inexplicable that while the guidance for terminally ill children explains that most of the pack can be ignored, the notes for adults do not. This curious omission is repeated in both the online and the paper packs. As a result, it seems highly likely that many terminally ill claimants and their carers, faced with the daunting prospect of completing a 40 page claim pack, simply give up on the idea there and then. This is certainly the finding of MacMillan Cancer Relief. In a report last year they revealed that more than half of the 154,000 people a year who die from cancer do not claim the benefits they are entitled to, saving the DWP around £126 million a year. Not surprisingly, one of the main reasons for the low take-up of DLA was found to be the complicated and confusing claim process.

No urgency
When we put both these issues to the DWP we received a response saying:

"Thank you for your feedback. I sent your comments to the sponsor of the DLA forms and they have replied saying your issues are being addressed, hopefully in time for the September 2006 version."

Here at Benefits and Work we're fairly unshockable when it comes to the behaviour of the DWP - but even our jaws dropped at this reply. It's quite clear that the DWP has no sense of urgency whatsoever about ceasing to misinform and short-change terminally ill children and adults.

Benefits and Work isn't going to let the matter drop and we're already taking further steps to shame the DWP into altering the packs. One of these is to contact Conservative MP Anne Main. In a debate on 8th March, Ms Main put forward the excellent proposal that when someone is diagnosed with a terminal illness, their GP, after fully discussing their diagnosis with the patient or their representative, ought to be responsible for ensuring that they are sent an application form for DLA. The form itself explained Ms Main, should be 'simple and sensitively worded'. (You can read Ms main's proposals on the splendid theyworkforyou.com website).

Sensitivity
Benefits and Work wholly applauds Ms Main's proposal, though it will be an uphill struggle to get it onto the statute book. In the meantime, when next you hear a DWP spokesperson claim that changes to incapacity benefit designed to get a million sick and disabled people back in to work will be carried out with sensitivity to the needs of claimants, remember: this is the same sensitive and trustworthy department that can't be bothered to lift a finger when it discovers it's depriving terminally ill children and adults of desperately needed cash.

New guides
Benefits and Work has now published four updated guides to completing the new claim packs for adults and children with mental and physical health problems. New issues covered include:

  • Returning just part of the pack before the deadline.
  • What the decision maker must take into account if you ask them to extend the six week time limit.
  • Appeal rights if you are refused an extension of the 6 week time limit.
  • Which parts of the pack terminally ill claimants should complete.
  • Using a personal capability report as evidence for a DLA claim.
  • Your rights when arranging an appointment with a visiting doctor.
  • How to avoid letting a visiting doctor take an oral statement from you.
  • Oral warnings from visiting doctors.
  • Your rights if asked to attend a Medical Examination Centre for a DLA medical.

The guides are available as free downloads for Benefits and Work members.