Disability living allowance (DLA) is a benefit paid to a disabled child or a child with a long term illness or health condition. DLA helps with the extra costs a disabled child may have. DLA is not means-tested so it does not matter what income or savings you have. Any decision to award DLA will be based on how your child’s condition impacts on their day to day life.
There are two components to the benefit – mobility and care. Mobility is paid at two rates, and the care component at three rates. You can find the current rates on the government website.
DLA has been replaced by personal independence payment (PIP) for adults aged 16 – 64; so when your child reaches 16 they will need to claim PIP. They will get a letter telling them that their DLA will end and they will need to make a new claim for PIP. They will not automatically be transferred to PIP.
Some adults can continue to get DLA, if the person you care for was born on or before 8th April 1948 and has an existing claim, they can retain DLA. All other adults getting DLA will be written to and will need to make a claim for Personal Independence Payment.
How do I claim DLA?
How do I get help with the forms?
Filling in the form yourself
How is the claim assessed?
Will my child have a face to face assessment?
What if the claim is turned down?
What happens if the person I care for gets DLA and their needs have changed?
My child has gone in to hospital. What happens to DLA?
My child has gone into residential care. How will this affect DLA?
Why was my child turned down for DLA?
Claiming DLA for someone who is terminally ill
The lower rate component can be paid if your child is aged 5 or over and needs someone with them when walking in an unfamiliar place. Your child must need a lot more ‘guidance or supervision’ than a non- disabled child of the same age.
Your child may get this if they have, for example:
- a learning disability
- a visual impairment
- mental health illness
The higher rate mobility component is paid to children aged 3 or over who are unable to walk or who have difficulty walking. Your child may also qualify if they have very challenging behaviour and are entitled to the highest rate of the care component.
Your child may get this if, for example:
- they have a physical disability that makes walking hard
- walking is limited due to pain, discomfort, breathlessness, fatigue or something else
- the exertion needed to walk would be dangerous to their health, children with serious lung, chest or heart conditions may qualify under this rule
- they have a severe behavioural problem which makes walking hard. Your child may qualify under this rule if they have a condition like autism or a severe learning disability and are entitled to the highest rate of the care component
This can be paid if your child needs more care than another child of the same age who is not disabled.
Your child may get this if they need help with:
- personal care e.g. getting up, dressing ,washing or using the toilet
- managing their emotions and behaviour
- eating and drinking
- play and therapy
The Citizens Advice Bureau has lots of useful information about claiming DLA for your child.
Other key facts
- to get the mobility component your child must be aged 3 or over and to get the lower rate they must be aged 5 or over
- the care component can be paid from birth but usually from 3 months old.
- your child will need to meet the criteria for DLA for 3 months before it can be paid and would need to continue to meet the criteria for 6 months after the claim is made. If your child is terminally ill they do not have to meet this rule.
- you can spend DLA however you want.
- if your child gets middle or high rate care you may be able to claim Carers Allowance.
- Your child will need to pass the UK residence and presence conditions. You can find out more information on the government website.
You can either phone for an application form or download one.
If you phone and the claim is successful your payments will be backdated to the date you made the call as long as you return the form within the time limit. If you downloaded an application form, you will only be paid from the date that the DWP receive the form.
Disability Living Allowance Helpline:
Telephone: 0800 121 4600
Monday – Friday 8am to 6pm
You can download the claim form on the government website.
It can be hard to get help with filling in the claim form; it is lengthy and can take a long time to fill in. There are organisations in Bristol and South Gloucestershire that may be able to help by giving information over the phone, or at a drop in. Some agencies offer appointments to help with filling in the form but often there is a wait and not everyone will be able to get this level of support. It is always worth trying to talk to someone about claiming DLA before doing the form and reading the information online if you can.
You could also try organisations or charities connected with the condition that your child has. Many produce guidance to help people fill in the forms and some have helplines where you can get advice and support.
Cerebra has a guide if your child has a neurological condition.
RNIB produces guidance to help you if your child is visually impaired.
You can find a local advice agency that may be able to help on the ACFA website.
It’s important to fill the form in with plenty of detail and to not underestimate what you do. When parent carers are used to carrying out caring tasks they can get so used to doing them that they no longer think of it as caring.
Give as much detail as you can on the form, with examples if possible. Some people find it helpful to keep a diary and you can even include a week’s caring diary with the form. Always keep a photocopy of the completed form.
A decision will be made based on what is put on the claim form and from any medical evidence. The form asks for details of your child’s GP, consultant or other people that your child sees. They may be contacted but there is no guarantee of this. If you have any letters or reports that support what you are saying on the form it is worth sending them in. As a parent carer you could write a supporting letter. Teachers, relatives and friends may provide valuable information too.
A letter will be sent with the decision. If DLA is awarded, consider having a benefits check because you may be entitled to other help. If the middle or high rate of the care component is awarded you may be able to claim Carers Allowance.
This will depend on the information you have given. If the DWP do not feel that they have a complete picture they may ask you and your child to have a face to face assessment. This would usually take place in your home. If you complete the form in detail and send supporting medical evidence this may mean they have enough information without the need to see you.
If the claim is turned down or your child is awarded less than you think they should be, you can ask for a mandatory reconsideration (MR). If this is unsuccessful, you can consider an appeal. It’s worth getting advice from a welfare rights specialist.
There are strict time limits for asking for a mandatory reconsideration and for an appeal and it’s important to stick to them. If you do miss a deadline you can still ask for the decision to be looked at again but you will need to have what the Department of Work and Pensions agree is a good reason for putting in a late request.
You can find an organisation locally that may be able to help with an appeal on the ACFA website.
If your child’s needs increase, they may be entitled to a higher rate of DLA. You can ask for the claim to be looked at again and will often have to fill in another claim form. It is important to seek advice before doing this as DLA could be reduced rather than increased. This is quite rare but can happen.
If your child’s needs decrease and you think that they no longer meet the criteria for DLA you will need to notify the DLA unit of this too.
DLA can be paid indefinitely during your child’s hospital stay as long as they continue to qualify for it and are aged under 18 when they are admitted. Carers Allowance can also continue as long as you meet all the conditions and still provide at least 35 hours of care each week. Some other benefits may be affected so it’s important to check the rules and keep the offices that pay your benefits informed.
If your child goes into a care home, which usually includes a residential school, the care component will usually stop if the place is being paid for by your local authority. However, it is still worth applying as you could get DLA for the days your child stays with you. This is a complex area so get advice if your child is going into a care home.
Your Carers Allowance could also be affected so if you get Carers Allowance, make sure you inform the Carers Allowance unit of any changes.
The care needs may not be enough to qualify for DLA. This may of course change over time so you can reapply if the needs increase.
However, in our experience, there could be other reasons why a claim for DLA is not successful.
- there may not have been enough medical evidence to support the claim.
- you may not have given the level of detail that is required. For example you might write that your child can get upstairs but fail to mention how this causes pain and breathlessness and how they have to rest frequently.
- medical or supporting evidence may not give enough detail or may contradict what you have said.
There are different rules often known as ‘special rules’ that enable people who are terminally ill to make a DLA claim and receive a decision more quickly than usual. Under these rules someone is considered to be terminally ill if they have a progressive disease and their death can ‘reasonably be expected’ within the next 6 months.
A special rules claim can be made by calling the usual DLA helpline number on 0800 121 4600. You will need to get a DS1500 medical report from the GP, hospital consultant or Macmillan nurse. This can be sent to the DWP by you or the person completing the form. The claim should be fast tracked and your child will get an award of the highest rate of the care component but will only receive the mobility component if the relevant disability conditions are met.
There is more about claiming DLA for someone who is terminally ill on the Citizens Advice Bureau’s website.