Tracey Millar - Welfare Rights Officer

Benefits system for people living with epilepsy podcast

Epilepsy Scotland’s first ever podcast focuses on the most frequently asked questions that come through our Helpline & Information service regarding the benefits system for people living with epilepsy.

One of our Welfare Rights Officers, Tracey Millar answers questions regarding Personal Independence Payment and Employment Support Allowance and much more.

To listen to the podcast click the link: Below is a full transcript of the podcast.

What benefits is someone living with epilepsy entitled to?

They may be entitled to some of the disability benefits.  This can range from Disability Living Allowance if they’re under 16. Personal Independence Payment if they’re between 16 and 65 years of age and Attendance Allowance if they’re over 65.

They could be entitled to Employment Support Allowance if they are unfit for work, Job Seekers Allowance or Universal Credit.

This is not an exhaustive list and depends upon the persons age and whether their epilepsy is controlled.   Also, whether they are in employment and if there are other health conditions to take into consideration.

An individual’s personal circumstances and information would be needed in order for us to establish full benefit entitlement.

If someone applied for Employment Support Allowance and has been put into Work Related Activity Group, what does this mean?

When you are awarded Employment Support Allowance, there are different qualifying groups.  The work-related activity group really means that it’s the benefit office’s belief that in the future you will be fit for work and they want to help you to prepare for that.

Work focused interviews would likely need to be attended.  This is with an advisor at the Job Centre. Or to attend a work/training programme as agreed by the Department for Work and Pensions work coach with a view to preparing the person for future employment or returning to work.  It is essential when people are asked to attend a work focused interview or attend a work programme that they do so.

If they don’t attend, they are at risk of having their benefits sanctioned.

If you had a lifetime award of Disability Living Allowance but has been told that needs to be re-assessed for Personal Independence Payment. A lot of people would say lifetime means lifetime. What can they do?

Unfortunately, there are no longer lifetime awards.  This is because the Personal Independence Payment is now replacing Disability Living Allowance. Everybody over 16 will transfer or be migrated on to Personal Independence Payment eventually.

They would need to claim the Personal Independence Payment within the timescale and that’s in the letter advising them, their DLA will end otherwise.

While people start their claim for Personal Independence Payment, the Disability Living Allowance will continue to run, until a decision is made on the Personal Independence Payment but if they don’t make the Personal Independence Payment claim within that timescale, which is usually about 4 weeks, their Disability Living Allowance will end.

So, they can’t decide not to claim Personal Independence Payment and allow Disability Living Allowance to run?  No, that’s not an option sadly.

Turned down for Personal Independence Payment, what can they do?

With most benefit decisions, the person would have the right to challenge the decision.  You would have to submit a Mandatory Reconsideration Request directly to the Department for Work and Pensions for that particular benefit.

If the decision remains unchanged, they then they have the right to lodge an appeal and they do that by submitting their letter of appeal to the Tribunals Service.

You can challenge decisions with one month of the decision date.

Epilepsy is uncontrolled and can’t work but have been told by the Department for Work and Pensions that they are fit for work. What do they do now?

Similar to the Personal Independence Payment, the person would have the right to challenge the decision within the one month. They may also be able to submit a new claim.  If there has been a substantial deterioration in the existing condition or a new condition has been diagnosed.

We would strongly recommend people seek advice in both Personal Independence Payment and Employment Support Allowance or any decision that people are looking to challenge we would strongly recommend they seek advice.

This is because agencies like Epilepsy Scotland have access to the criteria.  We can check whether they should meet the criteria ourselves, however we and similar agencies are not decision makers.  However, we can look at the criteria and see whether the person would meet it.  Unfortunately, a lot of people do fail the assessment even though they meet the criteria.

So, we would recommend getting support and you can also provide further evidence if necessary, to support your mandatory reconsideration or your appeal.

Someone’s had to give up work to look after their son or daughter who has severe epilepsy but have been told that they don’t qualify for carers allowance. Is this correct?

In this situation we would need to speak to the person and find out if their son is in receipt of a qualifying benefit.  This would be for example Disability Living Allowance in the middle or high rate care or Personal Independence Payment with the daily living component.

Welfare Rights

So, you can see that things really do depend on a person’s circumstances.  We would also have to look at the persons income. Although, they’re saying that they’ve had to give up work. It may be that they have other income coming into the household through a pension.  We would need to look at their individual circumstances in order to find out if they qualify for carer’s allowance.

Is there any help with completing Employment Support Allowance application forms?

Yes, we here at Epilepsy Scotland can help to complete Employment Support Allowance application forms. This assistance can be provided at our Glasgow or Edinburgh offices or in certain circumstances by a home visit.

We can also help to find or refer people to a local agency who might be able to assist, and we can also provide further information to that agency regarding epilepsy in order that they might get a better understanding for completing a person’s claim forms.

Can someone with epilepsy get a blue badge?

Yes indeed.  If a person is in receipt of Disability Living Allowance. The high rate mobility or Personal Independence Payment enhanced rate mobility, they would meet the automatic criteria to be issued a blue badge.

Otherwise, they can apply for a blue badge under the discretionary rules if they have restricted mobility and meet certain conditions.

If someone gets Personal Independence Payment. Can they volunteer or would this affect their benefit?

A lot of people who have had long term health conditions are keen to try to get back into working.  Therefore, volunteering is a good way for them to do that. Although, I can understand why people would want to do so.

It depends on the individual’s circumstances and would depend on the type of volunteering work and the hours they intend to carry that out over.

We would always advise anyone to get advice before committing to any volunteering because it could potentially affect their benefits.

If someone’s missed an appointment at the job centre because they had a seizure in the morning and have been sanctioned. What can they do?

The standard procedure for people is to challenge a benefit decision. Firstly, they would need to do that by lodging a Mandatory Reconsideration Request within the one-month time limit.  However, you can submit it late if you can show good reason.

You may also be able to apply for a hardship payment or submit a rapid reclaim. However, it is advisable when people are speaking to their work coach. To ask them to record in the claimant commitment that you’re at risk of seizures and that this could have an impact on your ability to attend appointments at times.  This is because they will already have that information in the file, which can be helpful.

Inform the Department for Work and Pensions of what has happened, if you have been unable to attend any appointments. It can be helpful to provide evidence to them where possible. You should complete this within five days.  If they agree you have shown good reason for your failure to attend, a sanction shouldn’t be applied.

If someone’s been told they have to attend an appeal, which they find really stressful and stress is a seizure trigger. What can they do?

I can understand that for a lot of people, stress can lead to an increase in seizures. In exceptional circumstances the Tribunals Service can carry out domiciliary hearings at home.  However, medical evidence would be required to show that this is necessary.

A paper hearing can be carried out without attending in person.  The success rate is increased if a person can attend the hearing.  This is because it provides them with the opportunity to advise the Tribunals of the impact their conditions have on them.

People can be accompanied by a family member or a friend.  Also, the Tribunals Service can provide transport in certain circumstances.

We would always recommend having a representative where possible.  This is because they can help you to prepare for the hearing.  Hopefully it will alleviate some of the stress and anxieties involved in the run up to the hearing.  Many local agencies can provide representation.

What is a Mandatory Reconsideration?

A Mandatory Reconsideration basically is a written or verbal request to the Department for Work and Pension informing them that you disagree with their initial benefit decision.

That’s the first step to when they’ve issued a decision, which you disagree with.  It allows you to provide the reasons that you disagree and possibly provide them with further information or evidence.  For example, a letter of support from a medical practitioner or an organisation who you’re attending for support.

This helps them to review your decision and it can sometimes result in the original decision being changed in your favour.  As before, your request should be submitted within one month of the decision date.

Finally, can you apply for Personal Independence Payment, even if you’re working?

Yes, if you meet the qualifying criteria.  Personal Independence Payment is a benefit paid to people who have additional costs associated with a disability or long-term condition.  This is designed to try and enable them to live as independently as possible, so that could obviously help with the cost of taxi’s, the heating, some home care etc. This is whether you are in or out of work and it’s paid regardless of any other income or savings that person may well have.

Our Welfare Rights Service is in high demand, and there may be a waiting list. For enquiries and available appointments, please phone 0141 427 4911.