DLA and Autism
Note: This information applies to people living in England, Wales, Scotland & Northern Ireland. Please note that this information is not professional advice or guidance, just the personal observations of a parent who has had to go through the process. Therefore the writer and all parties associated with the site deny any legal liability for action taken after having visited the site.
What is DLA?
If you have a child with a disability or health problem who is under 16 years old, then you may be entitled to DLA (Disability Living Allowance). This can assist with covering the extra costs of looking after a disabled child.
Note: People aged 16-64 can no longer submit a fresh claim for DLA, and should instead apply for financial support called Personal Independence Payment (PIP).
Can I get DLA if my child is autistic?
It depends. DLA will not be awarded simply because he or she has an autism diagnosis, or is displaying several of the symptoms of autism. Instead, there are 5 very specific criteria that your child’s needs must meet, regardless of the type of condition he or she has.
For a child under the age of 16 years to qualify for DLA, they must meet ALL of the following criteria:
- they must need supervision, care or attention or because of a physical or mental disability or health condition. Note that your child does not need to have an actual diagnosis.
- they must have needed this supervision, care or attention for at least three months, and be likely to need this care, attention or supervision for a further six months. Note: you can make the claim before the three months have passed, but you will not receive any payment until after the 3 month period.
- they must need “substantially” more care, attention or supervision than other children of the same age who do not have a disability or health condition
- they must have no immigration conditions attached to their stay in the UK subject to some exceptions (if they have immigration restrictions on their stay in the UK claiming benefits may affect their future right to remain in the UK, so seek specialist immigration advice before claiming)
- they must meet the residence and presence conditions
How much is DLA worth?
There are two components of DLA:
- care component : this can be awarded at a lower, middle or higher rate (between £23.20 – £87.65 per week). The car component has no lower age limit for payment.
- mobility component: this can be awarded at a lower or higher rate (a further £23.20 or £61.20 per week). Be aware that the higher rate cannot be paid until the child is three years of age and the lower rate cannot be paid until the child is five years of age.
For a clearer visual picture of the amounts available, in 2019/20 the weekly rates are:
Note: for the majority of ASD families accessing this site, the mobility component is irrelevant and therefore will not be discussed in much detail here.
The care component
The care component of DLA can be paid to a child who needs a lot of extra help with supervision, care or attention. The help they need must be “substantially” more than the help needed by a child of the same age without a disability or health condition. In practice, what this means is that your child either needs additional care with tasks that a child of the same age would be expected to complete on his own (eg a 14 year old who needs prompts throughout the process of taking a shower) or he takes much longer to complete the same task.
When completing the form, make sure to include details of specific tasks which your child requires substantial supervision / care / attention for, as well as details of tasks which take a very long time to complete (eg brushing teeth or putting on shoes).
The lower rate care component is for children who need help with their personal care for a “significant portion” of the day (which generally means at least an hour a day, although this does not necessarily have to be all at once).
Note: If you are 16 or over, you can still qualify for the lower rate of the care component if you cannot prepare a cooked main meal for yourself if you have the ingredients.
The middle rate care component is for children that have either daytime or night-time needs; see below for clarification.
The higher rate care component is for children who have both daytime AND night-time needs; see below for clarification.
The tests: daytime and night-time
The daytime and night-time tests relate to the level of ‘attention (personal care)’ and supervision which your child requires at different times in the day.
‘Attention’ is practical help from another person which is in relation to a bodily function. A bodily function is anything to do with the body and how it works, for example:
- dressing and;
‘Attention’ can be physical help such as washing a child’s hair or tying shoelaces (if other children of the same age would be able to do this without help), or can be non-physical help such as prompting a child though each stage of getting dressed, or encouraging a child to eat.
‘Supervision’ relates to the requirement for someone to watch over the child in order to avoid substantial danger. All children need supervision to some extent, so you must provide details of how the intensity of supervision is greater than that needed by other children.
In processing your DLA application, what will be important is what level of care is ‘reasonably required’ rather than what care is provided, is available or that the child accepts. In other words, it is reasonable to expect that the task should take place, whether it actually happens or not. For example, if it is very stressful and challenging to get a child to brush their teeth you might not manage to get them to brush their teeth twice a day, but help with brushing teeth is still needed twice a day, so that is what counts. Another example is a child who needs help to eat, but doesn’t get this at school. You can argue that the fact they come home from school having not eaten their lunch shows that they ‘reasonably require’ help to eat lunch, even if this help is not provided.
Frequency and duration of attention and supervision
The daytime test means that your child must need one of the following:
- frequent (ie about three times or more) help with personal care throughout the day
- someone to check on them continually (ie frequently or regularly) throughout the day to make sure that they are safe
The night-time test means that your child must need one of the following:
- help with personal care at least twice a night, or once a night for at least 20 minutes
- someone to check on them at least twice a night, or once a night for at least 20 minutes, to make sure that they are safe
Night-time is not so much related to hours of daylight and darkness, but just when your family head for bed each evening to sleep. So if your family routine is that everybody goes to bed around 10pm until 6.30am, then that is what ‘night-time’ means in your DLA application. Even if your care responsibilities mean that you do not sleep for that whole time.
How do I get a DLA application form?
England, Wales & Scotland
- call the Disability Living Allowance Helpline on 0800 121 4600 (textphone: 0800 121 4523)
- click here to download a claim form
- call the Disability and Carers Service on 0800 587 0912 (textphone: 0800 012 1574)
- click here to download a claim form
If you ask for a claim form by phone, it should be stamped with the date of issue. This is the date from which the benefit will be paid if the claim is successful, providing you return the form within six weeks. If you are not able to complete the form by this date, please let them know and seek advice.
If you download the claim form or get one from a local advice agency the claim will start from the date the completed form is received.
Read the form and the notes that go with it before you start to complete the form. You can attach pages to the application form if you think there is not enough space to explain the help that your child needs. Remember to add your child’s name and national insurance number to the extra pages.
How do I fill the DLA application form in?
- the form is long and complex, so take your time to complete the claim form, and remember that you don’t have to complete it all in one go
- list all of the help your child needs before completing the claim form
- if you are not sure about how much help your child needs, or how long things take, keep a diary for a week or so to give you an idea
- say how often your child needs help, rather than how often they get help
- it can be very difficult to do, but try to concentrate on the difficulties your child has and the extra care and support they need compared to other children of the same age
- try to use examples to describe your child’s needs where possible – don’t just rely on the tick boxes
- remember that the person who is looking at the form will not know your child and may not know anything about their condition
- there is a page on the claim form called “Statement from someone who knows the child”, and if there is a professional (ie a school teacher, GP, therapist etc.) who could write knowledgeably about your child, put their details on this page (if not you can fill it in yourself)
- if you put down the details of a professional make sure the person is relevant, for example if your child’s needs are mainly night-time needs there may be little point asking the school for details of their condition
- if you give details of more than one professional on the form, make it clear which one knows your child the best
- the DWP (Department for Communities in Northern Ireland) may write to one of the professionals you list on the form, so make sure you inform the professionals that you are putting their details down
- keep a copy of your form
Can I get help completing the DLA application form?
- Yes and you should; this website is not professional advice or guidance, just personal observations of a parent who has had to go through the process. You could ask for help to complete the claim form from a local advice agency – to find out about advice agencies in your area see the Advicelocal website.