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This article was published in April 2013. The information may be out of date. Please check our epilepsy information or our site A-Z.

Disability benefits: feeling the pinch?

22 Apr 2013

A pair of scissors cutting a pound coinThis month, changes to the benefits system may leave some people with disabilities worse off than under the previous rules – and the system is confusing at the best of times. Epilepsy Action’s Nicole Crosby-McKenna explains the changes and what to do if you’re affected

Many people with epilepsy successfully work in a variety of jobs. However, for some people, the impact of their epilepsy is severe enough to prevent them from working. This may be just a temporary break from working, but in some cases might be more permanent.

Epilepsy Action believes any person with epilepsy who needs support to access employment should receive it. However, financial support – and some understanding – should be available for any person who is genuinely unable to work due to their epilepsy.

A number of changes to the welfare system come into effect from April 2013. These include the spare-room subsidy commonly known as the ‘bedroom tax’. This change could reduce the amount of housing benefit a person or family receives. The aim is to place more people and families who live in social housing in ‘right-sized’ accommodation.

The government believes that this move could ease ‘over-crowding’ in some homes. It should also stop space being wasted – where people live in social accommodation but have more bedrooms than they need. You can read more about this benefits change in the article Bedroom tax exemptions not enough, published 14 March 2013.

Personal Independence Payment

Abstract image of pound coins next to a model houseAnother radical change is the replacement of Disability Living Allowance (DLA) with the Personal Independence Payment (PIP). Unfortunately, this change isn’t simply a case of swapping like for like and giving it a new name. The shift could impact on people who are already claiming DLA or might claim disability benefits in the future.

DLA was created over 20 years ago, to support people in meeting any ‘extra costs’ that arise from having a disability. Some people with long-term conditions need more support than others, so DLA is payable at three rates: higher, middle and lower rate. It also includes a daily living component and a mobility component (although the mobility component is payable at only two rates – high and low).

The aim of PIP is, like DLA, to support people in meeting any ‘extra costs’ that arise from having a disability. However – unlike DLA – the PIP is payable at only two rates: standard and enhanced. This means that people who might have qualified for lower rate DLA (but not middle rate) might not qualify for PIP at all. Government ministers believe that removing the lower support band would reduce the number of people claiming PIP. In turn, that would save the treasury money.

Compared with DLA, PIP also places a stronger emphasis on the individual tasks a person can and can’t do, rather than a description of a person’s condition. To potentially qualify for PIP, people with epilepsy and other fluctuating conditions must meet the ‘50 per cent rule’. This means that a person must need support to complete specific tasks on the majority of days over a 12-month period.

These tasks include things like washing and dressing, or planning and making a journey. A person unable to complete these tasks without support on an average of four days each week might qualify for PIP. A person unable to complete key tasks without support on an average of three days a week would not.

Why have these changes come into force?

Esther McVey is the UK’s Minister for Disabled People. In a statement released 8 April 2013, she said that the introduction of PIP will make sure that better support is provided to people who need it most. She also revealed that the assessment for disability benefit would change.

The Minister said: "At the moment the vast majority of claimants get the benefit for life without any systematic reassessments. Around 50 per cent of decisions are made on the basis of the claim form alone – without any additional corroborating medical evidence.

"The Personal Independence Payment will include a new face-to-face assessment and regular reviews – something missing in the current system. This will ensure the billions we spend give more targeted support to those who need it most."

PIP rollout

An older woman empties her pursePIP will slowly replace DLA in a phased introduction. From 8 April 2013, new claims for disability benefits in the North East and North West of England will come under PIP not DLA. From June 2013, people living in England, Scotland and Wales making a new claim for disability benefit will claim PIP not DLA.

People currently getting DLA will continue to receive it for the time being. However, this may also change after 30 September 2013. Then, you will be assessed for PIP as soon as you register a change in your circumstances, or your current DLA award ends. The Department of Work and Pensions estimate that most people currently receiving DLA won’t be assessed for PIP until 2015. The PIP-Checker is a handy tool created to help people find out when they will be affected by this change.

What will happen to people who don’t qualify for PIP support?

People who make a claim for PIP but who are turned down can appeal the decision. For example, perhaps you now have extra information to share with the assessors about how your epilepsy affects you.

If you need support, you might be advised to claim another benefit. These may include Employment Support Allowance (ESA), Income Support, Tax Credit or Universal Credit.

Other proposed welfare changes

Another major change is the introduction of the Universal Credit (UC). This benefit is also being phased in from April 2013, and will be widely in place from October 2013. The UC is an entirely new benefit, payable in different amounts. It will bring together and replace several other benefits, including the following.

  • income-based Jobseeker’s Allowance
  • income-related Employment and Support Allowance
  • Income Support
  • Child Tax Credits
  • Working Tax Credits
  • Housing Benefit

Many campaigners and charities have some concerns about the introduction of UC. The UC provides one large sum of money, paid on a monthly basis. The concerns are that some vulnerable people will find it difficult to manage their money properly over a month-long period.

five-pound and ten-pound notesOn top of this, the introduction of the UC coincides with the loss of Severe Disability Premium (SDP). SDP is an extra sum of money given to some people living with a health condition who already get DLA, Income Support or Tax Credits. SDP is awarded to help people meet extra costs that arise from having a disability or health condition.

The new ‘benefits cap’ has also made the news recently. The benefits cap applies to people claiming out-of-work benefits. These include Job Seekers Allowance, and Employment and Support Allowance. The government has set a maximum amount of money that a person or family claiming out-of-work benefits can get. This is the benefits cap.

The amount set is equivalent to the average weekly UK wage (after tax and national insurance have been taken away). Just to be clear, this isn’t saying that all people who need out-of-work benefits will get the same amount of money as the average ‘working family’. It is saying that they won’t get more than the average ‘working family’.

The benefits cap will gradually be applied to people claiming out-of-work benefits in the UK. People claiming out-of-work benefits living in Bromley, Croydon, Enfield and Haringey (London) are the first people whose benefits will be capped.

If you need support, how can you get it?

Firstly, if you need benefit support, you can get advice to help you identify which benefits to apply for. Call the Benefit Enquiry Line on 0800 882 200 (UK only). This is one example of an organisation that can help.

Epilepsy Action’s Epilepsy Helpline staff can also help you to think about how your epilepsy affects your right to claim. They can talk to you about the type of evidence you can provide to support your claim. For more information, email the Epilepsy Helpline.

Being able to provide a good explanation of how your epilepsy (and any other health issues) impact on your day-to-day life is useful. It could help benefit assessors make the right decision on whether or not you qualify for a specific benefit. From evidence Epilepsy Action has received, it appears that people don’t always provide enough information when making a claim.

Some people are very good at describing their epilepsy, seizure type and seizure frequency. However, they aren’t as good at explaining how it impacts on their lives and what support they need. When making a claim, you need to mention all of these things. Keeping a diary of how your epilepsy affects you might help. You could make a note of the following.

  • Your seizure frequency.
  • What your seizure recovery is like – for example, do you need to go to sleep? Is your awareness affected?
  • How long it takes you to recover from the seizure.
  • Whether you have had to go the emergency room at a hospital.
  • Whether rescue medication has been given by a carer or health professional.
  • Any support you are given by a partner or carer (for example, help with washing and dressing).Any side-effects you have experienced from your epilepsy, seizures or epilepsy medicines. For example, you may have experienced speech problems, poor memory, extreme tiredness, anxiety or depression.

Epilepsy Action has developed plans for a joint campaign with Epilepsy Society. Together, our organisations want to make sure that benefit assessors and decision-makers understand epilepsy better. Epilepsy Action has also become a member of the Disability Benefits Consortium (DBC).

This group has published a report that compares Atos and Capita – the two companies carrying out the PIP assessments. Atos has received a lot of criticism for its management of work capability assessments (WCA). WCA is a test of ‘fitness to work’ that people are required to have when they claim Employment Support Allowance (ESA).

As a member of the DBC, we are calling on you to contact your MP now to tell them about the DBC report. You can also tell your MP about the impact of living with epilepsy, or how well you think that benefit assessors understand epilepsy.

The DBC hope that this action will encourage MPs to put pressure on Capita and Atos to work with DBC members. This will enable us to make sure that benefits staff better understand disability and can make the right decision about a person’s claim.

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