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Disability Living Allowance (DLA) for people with epilepsy

This information applies to England, Scotland and Wales. For information on claiming DLA in Northern Ireland, go to the nidirect website.

What is Disability Living Allowance (DLA)?

DLA is a benefit to help with the extra costs of looking after a child who has a disability or health condition. In England, Scotland and Wales you can only make a new claim for DLA on behalf of a child under 16. We have more information about what is happening to DLA for adults.

What will my child get?

If your child is eligible for DLA, they will get between £21.80 and £139.75 a week depending on the level of help they need. These amounts were correct in January 2016. For up-to-date information about the rates of DLA visit gov.uk/disability-living-allowance-children/rates

Will my child get DLA?

Your child may be eligible for DLA if their epilepsy or any other disability or health condition means:

  • They need more looking after than a child of the same age who doesn’t have a disability and/or
  • They have difficulty getting about

They must have had these difficulties for at least three months and expect them to last for at least six months. For full details visit gov.uk/disability-living-allowance-children/eligibility

How do I claim DLA?

Download the claim form from the Government website or call 0345 712 3456.

Cerebra is a charity for children with neurological problems, including epilepsy. They have a free step-by-step guide to filling in the DLA claim form. The guide also has information on what to do if you are unhappy with a DLA decision. You can download it from the Cerebra website, or request a copy by calling 0800 328 1159, or emailing info@cerebra.org.uk

What is happening to DLA for adults?

DLA is ending for adults who were born after 8 April 1948 and are 16 or over. It is being replaced by Personal Independence Payment (PIP). If you are 16 or over you cannot make a new claim for DLA. If you have an existing DLA claim, how the changes affect you depends on your age.

Born after 8 April 1948 and are 16 or over

If you are currently claiming DLA and are in the above age group, you can keep claiming it until the Department for Work and Pensions (DWP) writes to you to:

  • Tell you when your DLA claim will end and
  • Invite you to apply for PIP

Epilepsy Action has more information about PIP. To find out when you’ll be invited to apply for PIP you can use the government’s online PIP checker: gov.uk/pip-checker

Born on or before 8 April 1948

You can keep claiming DLA and will not have to apply for PIP.

DLA in Northern Ireland

To date, PIP has not been introduced in Northern Ireland. This means both children and adults in Northern Ireland can still claim DLA. For more information about DLA in Northern Ireland, including who is eligible and how to claim, visit the nidirect website.

Where can I get help with benefits?

Turn2us
Provides a free online benefits calculator and grants search tool to help you find out what financial help you are entitled to.
Website: turn2us.org.uk/

Citizens Advice
Gives advice about your rights, including benefits. Advice provided by phone, online and face-to-face. They can also help you fill out claim forms for benefits.
Website: citizensadvice.org.uk
Find your local Citizens Advice
Telephone advice in England: 03444 111 444
Telephone advice in Wales: 03444 77 20 20

Contact a Family
Offers benefits advice for people with disabled children.
Website: cafamily.org.uk
Helpline: 0808 808 3555

DIAL UK
Disability Information and Advice Line services, run by and for disabled people. They may be able to refer you to someone who can help you fill out claim forms for benefits (provided there is someone in your area).
Helpline: 0808 800 3333 (to find your local group)
Website: scope.org.uk/dial

GOV.UK
This website has lots of information about all the different benefits that are available.
Website: gov.uk/browse/benefits

Disability Rights UK
This website has a number of free factsheets you can download.  It offers basic information about benefits, tax credits, social care and other disability-related issues for claimants and advisers.
Website: disabilityrightsuk.org

Cerebra
Cerebra have a free guide which takes you through each stage of applying for Disability Living Allowance for children.
Tel: 0800 328 1159
Website: cerebra.org.uk

Welfare Rights Unit
Welfare Rights Units give free advice and support on benefits. Some can also help with completing claim forms and appealing benefits decisions. Contact your local council to find out if they have a Welfare Rights Unit. To find your local council visit gov.uk/find-your-local-council

NI Direct
This website has lots of information about the benefits that are available in Northern Ireland.
Website: nidirect.gov.uk

Advice NI
Offers information, advice, advocacy and representation for people in Northern Ireland.
Helpline: 0800 988 2377
Website: adviceni.net

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F060a.05

This information has been produced under the terms of The Information Standard.

  • Updated January 2016
    To be reviewed January 2017

Comments: read the 18 comments or add yours

Comments

Hi Cathie

With the Personal Independent Payment the money will be paid to you for you to use as you need. You can use this money in anyway to help with your quality of live. It doesn’t matter if it’s your daughter that takes you shopping or helps with your daily care. 

The following information is taken form the Disability Rights UK PIP factsheet.

‘PIP is for you, not for a carer. You can qualify for PIP whether or not you have someone helping you. What matters is the effect your disability or health condition has on you and the help you need, not whether you actually get that help. You can spend your PIP on anything you like. PIP acts as a ‘passport’ for other types of help, such as the Motability Scheme (see Other ways PIP can help you).’ Here’s a link to this factsheet. If you haven’t already completed your application for PIP, you may wish to get help with completing the form one of the helpful organisations listed on our PIP webpage.

Many people experience a jumping movement in their sleep but I’ve not heard of many people who actually bite their tongue in their sleep. If you haven’t already, you could mention your night time symptoms to your epilepsy consultant. They may arrange for further tests such as a sleep EEG. Or they may suggest you wait and see if your epilepsy medicine helps with the night time tongue biting.

Regards

Diane Wallace

Advice and Information Team

Submitted by Diane on

I live with my partner and have been for a year now the problem I have is we need to move to a bigger bungalow and we have found one available an bided for it now we are in big talks with the council as im epileptic they say I need a shower now iv lived in this bungalow for 12 months with a bath and a mixer shower but they wont let us have this other bungalow because it has a bath and a mixer shower now iv had baths all my life and my partner sits with me as he is my carer 24 hrs a day and we need this bungalow I have been having a bath for the last 12 months so whats there problem as its only the same as it is here any help would be well good thankyou

Submitted by diane brown on

Dear Diane

That sounds like a difficult problem. If someone has uncontrolled epilepsy we would always recommend having a shower rather than a bath.

I wonder if you have been in touch with an occupational therapist from the council. I can see that you feel completely safe with your current arrangement. I’m not sure I can suggest anything else to persuade the council that it would be okay for you to continue in this way.

I wonder if you have an epilepsy nurse who could help you with this?

I do hope you are able to get the bungalow you want.

Cherry
Epilepsy Action Advice and Information Team

Submitted by Cherry, Epileps... on

Hi my son is six amd got diagnosed with nocturnal possiable optical lobe eplipsy 18 months ago over the the past 3 months he has has two sezieues in the day about 6 weeks apart but was really pootly for about a week each time..didnt eat or drink ..would I qualify

Submitted by donna chandler on

Hi Donna,

The guidelines for DLA state you may be entitled if your child needs more looking after than a child of the same age who isn’t disabled. As your son has only had two daytime seizures within six weeks it’s unlikely he would qualify. However if you want to try applying you can download a claim form from gov.uk/disability-living-allowance-children or call 0345 712 3456 to request one.

If you do decide to apply the charity Cerebra has a free guide which takes you through how to apply for DLA for children with brain-related conditions, such as epilepsy. You can call them on 0800 328 1159 or visit their website at cerebra.org.uk. The website’s down for maintenance right now but it should be up again soon.

If we can be of any more help, please feel free to contact us again, either by email or the Epilepsy Action Helpline freephone 0808 800 5050.

Grace
Epilepsy Action Advice and Information Team

Submitted by Grace@Epilepsy ... on

Hi, I was diagnosed with temporal lobe epilepsy and I have tonic clonic seizures, I work but only part time as my condition has worsened over the last couple of years. I've been on several drugs but non have controlled it as of yet. My seizures happen daily and on occasion the odd grand mal here and there. I've found my short term memory has also suffered over the last couple of years too, I forget medication, leave the house unlocked and stop mid conversation as I forget what I'm talking about...
Last year I blacked out and fell breaking my hand in the process first and only time I've injured myself during a seizure but now I'm not allowed to be left alone (wife's rules) can't go to town alone, shower with door open, cooking is a thing of the past and never work unsupervised.... Feels a bit like my independence has gone to be honest.

Is there any help I can receive???

Thanks in advance

Submitted by steven on

Hi Steven
That sounds like you’re having a pretty tough time. You’ve obviously been struggling with seizure control. I wonder if you’ve had a chance to look at our Seize Control campaign. You might be interested in attending one of the sessions that are being held around the country this year. The Near Me tab also give you information about whether there is a coffee and chat group or any other event near you. Sometimes it can be really helpful to talk to other people in a similar situation. In the same vein, we have an online community called forum4e. It is for people with epilepsy and carers of people with epilepsy.

Memory is a really common problem for people with epilepsy. But it’s especially common for people with temporal lobe epilepsy. I don’t know if you’ve seen our information and strategies for dealing with a poor memory. There may be something there that might help you.

I can see you’ve been on our DLA page. It might be worth starting on the general entitlements page for where you live. It is always worth checking about free prescriptions, and a free bus pass and the Disabled Persons Railcard.

In most parts of the country Disabled Living Allowance  has now been replaced by Personal Independence Payments (PIP). It is possible you might be able to get this. Use the PIP check, linked from our PIP pages to get a rough idea of whether you might be eligible. If you could be, then my suggestion would be that you print off the application form and our information and then make an appointment at your local Citizens Advice Bureau to get some help with the form.

It sounds awful that you broke your hand, though I’m glad to hear that it was a first seizure related injury. Youi might want to look at our information on safety. There are some tips there about how to stay safe but also keep some of your independence.

I really hope this information gives you a few things to move forward with. If we can be of any more help, please feel free to contact us again, either by email or the Epilepsy Helpline freephone 0808 800 5050.

Cherry
Epilepsy Action Advice and Information Team

Submitted by Cherry, Epileps... on

Hi. I have a 4yr old girl who is now being diagnosed with epilepsy..she has been suffering with seizures for a long time and also has febrile convulsions..I was wondering whether she would qualify for dla as her seizures are very frequent and I have to watch everything she does..thanks for the help..Reanna

Submitted by Reanna on

Hi Reanna
I hope it is feeling ‘easier’ finally to have a diagnosis for your daughter.

To get DLA for a child she needs to require more care than another child of her age. So it may be worth your while to apply. For a guide to completing the form contact Cerebra. You can either download it or they will send you a copy.

You may also find our information on children with epilepsy useful.

And NHS Choices has some good information on febrile convulsions.

If we can be of any more help, please feel free to contact us again, either by email or the Epilepsy Helpline freephone 0808 800 5050.

Cherry
Epilepsy Action Advice and Information Team

Submitted by Cherry, Epileps... on

Hi, I'm 49 diagnosed with epilepsy - focal but in the last 3 years changed to idiopathic generalised. They used to be approx 3 years apart up until 3 years ago, they became everyday. At that point I was given medium care rate and low rate mobility. Last year I overdosed. My meds have been tweaked and I have had the VNS fitted. I still have to take my meds, but my seizures are every 3-4 weeks. I am hard of hearing also. I live with my 15 year old son but in an area where I have no family or friends. My meds, and I've had many changes, make me lack concentration, short term memory loss and now generally feel low. My epitologist told me emotionally it would take up to 2 years to heal from the trauma of everything. What will happen with regard to PIP? I am concerned with the side affects I feel, they trouble me in a lot of ways. If they turn me down for PIP, I don't think I could cope with having to do fulltime work to get MAD. To look at me, they'd say, there's nothing wrong with you...but they have no idea what goes on inside. The stress of a tribunal would put me in a bad place with seizures. So sorry for a lengthy comment.x

Submitted by Amanda Wilson on

Hi Amanda
To our understanding, you can get PIP for your needs whether they are caused by your medical condition, or side-effects of your treatment. The main consideration is that you fulfil the 50% rule:

You must need support fifty per cent or more of the time. For example, during a month, you must need support in order to be able to complete key tasks, at least 16 out of the 30 or 31 days of the month. In this situation you might qualify for PIP. But if you only needed support for 14 or less of the days, then you won’t qualify for PIP.

There’s more in-depth information about PIP on our website, as well as a list of organisations who can offer you more specific advice.

If you would like to discuss this further, please call the Epilepsy Helpline freephone 0808 800 5050 and we will do our best to help you.

Regards

Kathy Bairstow
Epilepsy Action Advice and Information Team

Submitted by Kathy, Epilepsy... on

My son is 2 years 5 months he has been diagnosed with multifocal epilepsy he has had fits since he was 6 months old he can have anywhere up to 250 a day he is always falling over and hurts himself when he has them, it had stopped his speech the medicine he is on hasn't helped either, I have to watch over him 24/7 I no he is 2 1/2 so I have to look after him anyway but more so now because of the fits he has and he has nights where he doesn't sleep because he will have some and they startle him. Would I Beable to get any help?

Submitted by Jo on

Hi Jo
Thank you for your question regarding support for your son.

Your son may be entitled to the DLA if his epilepsy or any other disability or health condition means he needs more looking after than a child of the same age who doesn’t have a disability and/or he has difficulty getting about.

Cerebra is a charity for children with neurological problems, including epilepsy. They have a free step-by-step guide to filling in the DLA claim form. You can download it from the Cerebra website, or request a copy by calling 0800 328 1159, or emailing info@cerebra.org.uk.

To find out what other benefits you may be entitled to, you could use an online benefits checker like Turn2us.

Also your local authority is responsible for providing any non-medical care services that your son is assessed as needing. This could include equipment for daily living, care at home, access to play schemes and respite care so that you can get a break. To access such services you'll need to ask for a needs assessment.

For some parents contacting other people who understand what they are experiencing can help. If you think this could help you, you may find some of our other services helpful. We have our local groups, including coffee & chat groups. We have our forum4e online community, and we are on facebook and twitter.

As your son has multifocal epilepsy I hope he is being seen regularly by a specialist doctor in epilepsy. I wonder if he has an epilepsy nurse. If you are not aware of the epilepsy nurses, I can check there is one in your area. Please contact me with where in the UK you live.

I hope this is of help. If we can be of any more help, please feel free to contact us again. You can contact us directly, either by email helpline@epilepsy.org.uk or phone the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.

Regards
Diane
Epilepsy Action Advice and Information Team

Submitted by Diane, Epilepsy... on

My son is 3 years old, but Am Zambian. Would anyone help my son who has more than 30 fits in a day? I need help

Submitted by Hanjabu EUCRESS on

Hi Hanjabu
Thanks for your message. It must be really upsetting to see your son having so many seizures each day. Do you live in Zambia or the UK? As we’re a UK charity, we only have information about epilepsy treatment and support in this country. Unfortunately we’re not aware of any epilepsy organisations in Zambia, but you could try our list of international epilepsy organisations to see if any of them can help.

Best wishes
Grace
Epilepsy Action Advice and Information Team

Submitted by Grace, Epilepsy... on

Can anyone explain how a 25 year old very fit and working full time in a manual job,also a doorman at weekends can still be receiving disability living allowance for a minor problem as a child,(now recovered).Over 25 years this person who always brags and jokes about it must have had £40,000 undeserved and definitely not needed,these are the things that should be stopped and repaid in full.

Submitted by Jamie Brace on

Hi my sone has been diagnosed with Tonic seizures and also mental illness he is curency in hospital and I was wondering if he is entitled to any benifitd he has at least 3 to 4 seizures a day and through the night we need to look after him all the time we are deverstated he has alway's worked and been quite well

Submitted by Susan hackney on

Hello Susan
It sounds as though your son has been through a lot recently. It must be difficult seeing someone you love having seizures and coping with mental illness.

Whether a person is able to claim any benefits depends on their personal situation. It would be worth you contacting a specialist benefits advisor such as Turn2us or Citizens Advice to check whether he is entitled to anything. They will be able to do a check for him to find out if he is able to get some support.

If we can be of any more help, please do not hesitate to get in touch.

Karen
Epilepsy Action Advice & Information Team

Submitted by Karen, Epilepsy... on