disability living allowance (DLA)

DLA is often the first benefit which parents claim, and it’s also a passport to other sorts of financial help.

Disability Living Allowance is paid monthly, and it isn’t taxed or means tested, which means they don’t take your other income into account. You can claim DLA if your child needs more help or looking after than other children their age because of their additional needs. Your child can claim DLA until they are 16, when they will need to move over to the equivalent benefit for adults, Personal Independence Payment (PIP).

Who can claim DLA?
We think the name of the benefit ‘Disability Living Allowance’ is likely to put many parents off claiming. In fact, most parents who are entitled to claim DLA for their child would not describe them as disabled at all. By far, the majority of children getting DLA have invisible impairments. So, if you’d describe your child as having additional needs, you might be missing out on financial support that your child is entitled to.

It’s not just children with obvious physical disabilities who need ‘extra help’ looking after. Many of our children need help to make themselves understood, make sense of what’s going on around them, or to manage difficult feelings like anger or anxiety. Some children need ‘hands on’ help, or prompting and encouragement with everyday activities like dressing, washing, and toileting or maybe to learn how to play or get along with other children. Your child may need you to monitor a medical condition, give medication, help to use special equipment, or to carry out a therapy programme. Or perhaps your child needs your help to get out and about, or needs you to keep an eye on them to keep safe.

Some children need much more help than others of the same age. But even if your child needs extra help with just some of the things we have mentioned, we think it’s worth making a claim for DLA. If your claim is successful DLA is payable in two parts. There are care and mobility components: you can claim either or both and there are rules about what you can claim.

The care component
You can claim this if your child needs help with ‘personal care’, that is, looking after themselves and this includes things like keeping safe and communication. You can claim this part of the benefit at any time, as long as your child has needed the extra help for at least three months and will continue to need that help for at least another six months. There are special rules if your child is terminally ill. There are three rates at which it can be paid:

The lower rate: if your child needs some help during the day or night. This is currently £22.65 per week.

The middle rate: if your child needs frequent help or constant supervision (more so than for other children their age) during the day, supervision at night, or someone to help while they’re on dialysis. This is currently £57.30 per week.

The high rate: if your child needs help day and night, or is terminally ill. This is currently £85.60 per week.

The mobility component

You can claim this part of the benefit if they need extra help with getting around. There are two rates for this:

The higher rate: if your child’s ability to get around is severely restricted by their disability. It is payable to children from the age of three who are unable to walk or are deemed virtually unable to walk. Children meeting this rule are likely to have a severe physical or sensory impairment, a life threatening neurological, cardiac or respiratory disorder.

The higher rate is also payable to a very small number of children on the grounds of severe mental impairment. These are children who have very challenging behaviour, are already in receipt of the high rate of the care component, and have a diagnosis of severe impairment of cognitive and social functioning. This is a tall order, and your child does have to meet every one of these criteria. It’s never straightforward to claim the higher rate on these grounds because the DWP struggles to understand how to apply this rule appropriately, and the DLA claim pack does not encourage you to give the relevant information.

If you think your child meets these rules, you’ll need to take a belt and braces approach. We’d suggest you explain these needs on the part that asks for extra information about your child’s physical ability to walk. You should also make it absolutely clear on the subsequent pages of the claim pack that your child is so learning disabled that they are not able to take advantage of guidance and supervision. Be sure to include examples of extreme behaviour that has put you and your child at risk. It’s worth getting a supporting letter from your child’s special school or nursery, too.

If your child is coming up to three years old and already receives the care component of DLA at the higher rate, you should be contacted and asked if you wish to make a claim for the mobility component. This is currently £59.75 per week.

If you do get the higher rate for mobility for your child, you may be entitled to additional help with transport and parking. Find out more about getting help with transport and parking.

The lower rate: if your child needs someone around to keep them safe or someone to help them find their way around. It is payable to children from the age of five. Many primary age children are still learning how to get about and stay safe on streets and in parks near their homes. So, to get this you will need to show how much more help your child needs than others of the same age. Most children meeting the criteria for the lower rate mobility component are likely to have a significant learning or co-ordination difficulty, a communication disorder or some sensory impairment. This is currently £22.65 per week.

How to apply for DLA

Start by getting a claim pack soon as possible: DLA cannot be backdated beyond the date you first asked for this. You can:

  • Download a claim pack by visiting the goverment’s gov.uk website
  • Request it from the Department for Work and Pension’s (DWP) DLA helpline on 0800 121 4600 or text phone on 0800 121 4523.
  • Complete the form online but we wouldn’t recommend you do this, simply because most text boxes on the online form will only allow you around 300 characters, and this isn’t enough to explain most children’s needs.

It’s best to get the form by phoning because then the DWP stamp it with two dates: the first is the date you phoned to ask for it and the other is six weeks later. As long as you send the form back within six weeks, if it’s successful, the claim can start from the first date.

Get help with filling in a DLA form
DLA forms are long and daunting so it’s well worth asking for some help to fill them in. You could ask a friend or a parent who has a child with similar problems or call the Amaze SENDIASS helpline to see if we can help.

Get help from Amaze with DLA and PIP

Parent carers and young people in Brighton & Hove and East Sussex can get advice about claiming DLA or PIP from our SENDIASS helpline, and they may be able to access more personal support via workshops, email correspondence or one to one support (only in Brighton & Hove at the moment). Visit our services and support area to find out more about how Amaze can help with DLA and PIP claims.

Who else can help with disability benefits?

Brighton & Hove

If Amaze is unable to help you, we may be able to point you in the direction of other services that offer support with benefits applications, like Possability People, St. Luke’s Advice Service, or BUCFP. These are more general benefits advice services, however, rather than specialists in supporting parent carers.

East Sussex

If Amaze is unable to help you, East Sussex families and young people can get free benefits advice through either the Welfare Benefits Project or the Citizen’s Advice Bureau, depending on where you live. See the East Sussex County Council website for more information. Hastings Advice and Representation Centre (HARC), which is part of the Welfare Benefits Project, runs outreach advice surgeries in Bexhill, Hastings, Lewes, Newhaven, Rye and Uckfield.

Many other disability organisations offer useful advice about claiming DLA for children and young people with specific chronic illnesses, disabilities or impairments. Their websites can be good places to visit, especially if your child’s needs are just emerging. It can be really hard in the early days to make sense of how a child’s diagnosis might have an impact on everyday life. Try our useful links section for details of the main disability organisations in the UK.

It’s less likely that an advisor from a general advice agency will have detailed knowledge of your child’s disability and how this impacts on their everyday life. With this in mind, it might be useful to go well prepared. We think it’s worth making some notes before your appointment, taking photocopies of any reports and assessments you have, and especially your child’s EHC plan if they have one. You could also take any useful resources that you have from us.

Gathering evidence

The DWP will also want evidence from other people who know your child. So be prepared. First, check that all professionals whose details you include know you are claiming, but don’t expect the DWP to contact them. Send in copies of the most recent reports or assessments from any specialists your child sees. You can never have too much evidence. GPs can find themselves ‘out of the loop’ as your child is referred onto specialist consultants, so it may be worth making an appointment with your doctor to put them in the picture. The DWP will usually contact your child’s school, especially if you haven’t included evidence with your claim about the extra help that your child gets.

I got so used to helping her I had forgotten that other children her age could do these things for themselves
What to do if your DLA claim is turned down
If your child’s claim for DLA is turned down, or you don’t get the result you expected, don’t give up. Over 50% of decisions are overturned when you ask another decision maker to look at the claim again and nearly 80% of appeals are successful.

You can also ask for a review if your child is receiving the benefit at a lower rate and their condition alters and they need more help, or if the decision was correct at the time but circumstances have changed. The DWP can look at any part of the award again, even a part you are happy with, so it’s important to seek advice before asking for a decision to be looked at again, just to make the best of this opportunity. You can challenge a non-award or the length of an award. You can also argue that you feel your child should be entitled to a higher rate of either the care or mobility component, but be sure to check the criteria first.

Asking for a reconsideration

When you ask another decision maker to look again at the claim, this is called requesting a reconsideration. The DWP must do this, if you ask. You must go through this process before you can appeal. The outcome letter will explain what to do next if you do not agree with a decision and the date by which you need to reply. The first thing to do is contact the DWP: you can do this over the phone.

Say what it is that you do not agree with and why. It may be that you feel your child should be entitled to the higher rate for the mobility component rather than the lower rate. Or maybe you disagree with the length of the award. If you did not keep a copy of the claim, ask for a copy of everything you’ve submitted so far, as well as any extra reports requested by DWP. Ask for a Written Statement of Reasons as well.

You only have 28 days from the date on the letter to tell the DWP that you disagree with a decision but if you ask for a ‘Written Statement of Reasons’ you get an extra two weeks. Although sometimes these have enraged some of us, having a more detailed written response can make sense of how the DWP came to their first decision. Responding to each of their points, however bizarre, can be a useful way to structure your reply.

The DWP’s statement of reasons felt really patronising. It didn’t take on board the amount of emotional support as well as the practical stuff.

Go through all the paperwork carefully and think about what would make your claim stronger. It’s worth getting a benefits advice service to help you look again at what you wrote and consider how to improve your claim. Has any evidence been overlooked? Do you need extra reports to support what you say? If you haven’t kept a sleep diary and you’re trying to secure the higher rate of the care component, now’s the time to do it. Write giving detailed reasons why you disagree with the decision and stick to timescales.

The DWP has 13 weeks to look at the claim again. Your right to appeal a DLA decision only arises once a different decision maker has reviewed all the information and you have the outcome in writing. Hopefully, the first decision will be revised in your child’s favour and you won’t need to go to appeal. If it isn’t, all is not lost!

Whether or not the decision is changed, you will get a mandatory reconsideration notice. You will need this to appeal. You now have one calendar month to submit your appeal.

Download our fact sheet for more information:

DLA Appeals

Appeals are made directly to an independent Tribunal. You will need to fill in an SSCS1 notice of appeal. You can download this from www.gov.uk website or by ringing the DWP on 0800 121 4600 to get one posted out. Say clearly what part of the decision you disagree with and why. Keep a copy. Send it back within the timescale.

We can offer Brighton and Hove parents advice to help prepare for DLA appeals but we can’t support you on the day. East Sussex parents may be able to get support preparing for appeal from the Welfare Benefits Project or Citizens Advice Bureau.

You will get a pre-hearing questionnaire. It’s best to opt for a face to face hearing, as your chances of an outcome in your child’s favour are much greater if you do. You do not need to take someone like a solicitor with you. Experience of DLA appeal tribunals tells us parents and carers are generally best placed to ‘tell it how it is’.

If you don’t want to attend in person, you can submit an appeal in writing or send a representative to act on your child’s behalf. But if you have a campaigning spirit and find it easy to speak from the heart, it’s worth doing it yourself.

If you have any more supporting evidence, send it in at least a week before the hearing. If you only get a report the day before, take it with you and explain about this. In our experience the Tribunal panel will accept evidence on the day.

I had visions of standing in a dock being interrogated. But on the day everyone was really nice, put me at my ease and explained everything very clearly. The Panel was kind and respectful and had read the papers. They had grasped the issues: their questions were relevant. There was nothing that I felt was attacking or interrogating. But it is an emotional roller coaster and they were fine when I became upset.

Remember, the Tribunal will want to know how things were at the time you put in the claim. Appeals can take a year to be heard, so make time to read through your ‘bundle’ of papers several times. What’s important is how things were at the time you made the claim so it’s worth refreshing your memory.

There are time limits for reviews and appeals so always get advice as quickly as possible. In some cases, the Money Advice and Community Support Service, or the Citizen’s Advice Bureau may be able to help you with an appeal, but you may need to meet certain criteria in order for them to help you. Another option for East Sussex parent carers is Hastings Advice and Representation Centre.

Brighton & Hove parents are sometimes able to access advice and support with appeals from the council’s Welfare Rights team, or from a charity like Possability People, BUCFP, or St Luke’s Advice Service.

Download our fact sheet for more information:


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