Parents & families

DLA is an allowance paid to help with the extra costs of having a disabled  child under 16.  The term disabled includes learning disability, physical disability, behavioural difficulties, mental health conditions and also medical conditions,

You may not think of your child as ‘disabled’ but you may still be able to claim DLA when your child has a long term illness such as chronic kidney disease.

There are two parts to DLA – care and mobility

Care

• You will need to show that your child needs more care or supervision than a child of the same age who doesn’t have a disability
• If you are caring for a young baby the care part of DLA isn’t paid until your baby reaches 3 months old but you can apply before that date. If your child is terminally ill you can get DLA before your child is three months old.

Mobility

• You will need to show that your child needs support with walking or getting about in unfamiliar places or outdoors.
• You can’t claim for mobility until your child is 3 years old.

Your child may get either the care or the mobility part or they may get both.

They must have needed support in these areas for three months and need support for at least a further 6 months.

Who can apply for DLA?

Anyone who is caring for a child as their parent – you don’t have to be a birth parent – you could be a step-parent, grandparent, aunt/uncle, sibling, foster parent or guardian.

DLA isn’t means tested so it doesn’t matter what your income is or how much savings you may have.

Any benefits you already get won’t be affected by you getting DLA.

Getting DLA may mean you can then apply for other benefits or receive a higher rate of the benefits you are already claim.

If you are not from the UK

If your child is subject to immigration control your immigration status could be at risk if you apply for DLA

If you or your child are subject to immigration control you usually can’t apply for DLA but you might be able to apply if you have lived in another EEA country, you’re a refugee or an immediate family member of a refugee.

No matter what your child’s immigration status is, they must have lived in England Wales or Scotland for a certain amount of time to be before you can apply.

If you are unsure about whether or not you can apply or just want to check anything you can ring one of the helplines listed below:

DLA Helpline

Telephone   0800 121 4600

Textphone   0800 121 4523

Mon – Fri     8am to 6pm

Calls are free in the UK

Alternatively, look on the websites:

gov.uk  

www.citizensadvice.org.uk (for the address or phone number of your local Citizen’s Advice Bureau)

www.contact.org.uk (previously Contact a Family).  Helpline 0808 808 3555.  Mon – Fri 9.30am to 5pm.  Calls are free in the UK. 

They have a booklet on claiming DLA for your child you can download from their website. 

What sort of things do I need to be helping my child with?

Care

You will need to be giving your child extra support (more than that needed by a child of the same age without any of the above conditions) with:

• Washing
• Dressing
• Eating
• Using the toilet
• Communication
• Settling in bed
• Keeping an eye on their condition or medication

Even if your child is a baby who naturally needs help with the above you still may be giving them more support than another baby of the same age who doesn’t have what is classed as a disability eg having to give them treatment during the night

Mobility

You will need to be giving your child more support and supervision when they are getting around outside and this needs to be more than that needed by a child of the same age who doesn’t have a disability.

The support you give may be because your child cannot walk or can only walk short distances without feeling uncomfortable or in pain. It could also be that walking has a negative effect on their health or they have severe sight or hearing difficulties.

Children who are terminally ill

If a child is terminally ill and has less than six months to live there are different rules and some a different form (DS1500) that the child’s consultant or specialist nurse have to fill in. This needs to be sent in with the DLA form and the mobility part of the DLA form also needs to be filled in. If a terminally ill child is awarded the care part of DLA it will be at the high rate.

What if my child goes into hospital?

If your child is under 18 when they go into hospital or turns 18 when they are in hospital they will continue to get DLA or PIP – the new allowance that has replaced DLA for over 16’s.

If they are over 18 when they are admitted they will receive their PIP payments for 28 days but it will then be suspended.

What happens when a child is 16?

A benefit called Personal Independence Payment (PIP) has replaced DLA for people aged 16-64. You should get a letter before your child’s 16th birthday to tell you about changing to PIP.

How do I apply for DLA?

It’s important that you apply as soon as your child qualifies so you don’t lose out on money you are entitled to.

If you live in England, Scotland or Wales you can apply by contacting:

The Disability Service Centre 0345 605 6055 or textphone 0345 604 5312 and request an application form.

Or you can download an application form at gov.uk and apply by filling it in and posting to the address on the form.

It is important to keep a daily diary over a seven day period, so that you can provide detailed evidence about the care that you provide for your child during the day and night. This should be submitted with the application form. Here are some examples of daily diaries that will help you to consider what you need to record.

• Additional information for a young child requiring haemodialysis
• Daily diary for a baby with stage 5 kidney disease
• Daily diary for a child on PD and gastrostomy feeds
• Daily diary for young child with CKD requiring NG feeding and medication

Suzanne Batte and Naseema Hakim can also provide advice regarding the daily diaries. You are more likely to be awarded the rate you are entitled to if you submit a diary, as the application forms do not provide enough space to reflect how much care you give to your child.

What if my child’s circumstances change?

It is really important to tell of any changes to your child’s condition or treatment or any hospital stays as these may affect the amount you get or may mean you are no longer eligible to have DLA.

If you do get DLA - managing the money

If you are awarded DLA it can be tempting to use it as part of the family budget especially when things get difficult financially through having to have time off work or give up work but if you can try not to become dependent on the amount you get as it can change if your child no longer needs the support you initially gave and may at some point in the future stop altogether. Some people have a separate account for the DLA so they can keep track of it and it isn’t swallowed up with the family finances

See our Managing Your Money section for tips.

More information about DLA and other allowances is available from the following sources below.  The renal social workers can also give you advice and support.

DLA Helpline

Telephone   0800 121 4600.  Textphone   0800 121 4523.  Mon – Fri  8am to 6pm.  Calls are free in the UK.

www.gov.uk

Citizen’s Advice Bureau

Contact (previously known as Contact a Family) Telephone  0808 808 3555.  Mon to Fri 9.30am to 5pm.  Calls are free in the UK.