Are you thinking about or do you need to apply for Disability Living Allowance (DLA) for your child? It is a mammoth form and a very daunting task. No one wants to list out everything that their child struggles with on a government form.
When my son was first diagnosed as autistic we were told to apply for DLA. If I’m honest I was very uncomfortable with this. Why was I uncomfortable? Well I thought I was doing that same as most parents with young children. Although some things were difficult to manage, all toddlers are difficult right? I now realise that this benefit is there to support people with additional needs and we do have costs and needs over and above my sons peers.
I used to work in a government agency so I have tons of experience with government forms. This was probably the hardest form I have ever completed because it is totally different to fill in a form all about your own child. Its really difficult looking at your child in comparison to their peers when they have a disability. I have pulled this post together to provide all the information about DLA for a child with autism to help others complete the form.
What is DLA?
DLA – Disability Living Allowance is financial support from the UK government for people with a mental or physical disability to provide assistance with personal care or mobility needs. It is a benefit to help with additional costs related to disability, illness and health.
Essentially if a child has care and mobility needs that are higher than that of a child the same age they may be eligible for DLA. If the child has a diagnosed disability they may also be eligible for DLA.
DLA is only for children under 16, if you are over 16 you need to apply for Personal Independance Payments (PIPs).
DLA rates for a child with autism
Disability Living Allowance funding has two main parts – Mobility and Care. How much you get depends on how much help is required, currently rates are between £23.20 – £87.65 per week.
Mobility is split into two rates. The lower rate is for children over 5 years old who can walk but need guidance and or supervision outdoors. The higher rate is for children over 3 years old that have a physical disability affecting their ability to walk, this also includes being deaf, blind and having a severe mental impairment.
Care is split into three. The lower rate is for children with additional care needs some of the time. The medium rate is for children with additional care needs most of the time. The higher rate is for children with additional care needs all the time.
Should I apply for DLA?
If your child has a diagnosed disability and has additional needs compared to other children of the same age then yes.
If you do not have a diagnosis you can still apply but will need to provide evidence relating to the child’s needs – again in comparison to children the same age.
Can you get DLA for a child with autism?
Yes. Again the requirement will be evidence to show the child has additional needs compared to their peers.
I was very unsure if I should apply for DLA when it was first suggested to me. Once I thought about what we need for my son in comparison to other children it became clearer that we have additional costs.
Here are some of my additional costs in relation to my autistic 4 year old:
- His specialist pre-school is 7.8 miles away so we have to drive there and back twice a day three times a week, this is so that he can receive music therapy, speech and language therapy and specialist teaching.
- I have numerous meetings, appointments and therapies, specialist play groups to attend on a regular basis – most at least 6-10 miles from home so I spend lots more on petrol. This also makes it hard to hold down a full time job, so I work part time in the evenings instead.
- I have had to pay for training, therapy and courses to support my son. This is not cheap, an hour with a therapist can be between £50-£200. Courses are often upwards of £100 for a day, that’s not mentioning the cost of childcare and transport.
- My son is non verbal and uses the Picture Exchange Communication System (PECS). I have had to buy a laminator, communication books, lots and lots of Velcro / laminating pockets and the amount of printing I have to do all so that I can communicate with my son using PECS and provide the visual aids he needs is enormous.
You can see more aids around our house in my behind the scenes post.
They are all small things individually but when you add it up there is significant financial impact. The amount we receive in DLA barely even covers my additional weekly petrol costs.
I am so pleased that I applied, even just filling out the form helped with later forms such as his education health and care plan (EHCP). Having his DLA award really does help with the additional costs. It means I can get that extra time with speech and language or go on the course that we need. It also has become proof of my son’s disability, professionals will often ask if he has DLA, it often comes up on forms. Even when you go to the zoo I can show our proof of DLA which means he gets to take an adult carer for free (trust me we need an extra pair of hands).
DLA is tax free so it doesn’t matter if you work, have savings or claim other benefits.
If you are unsure check out the eligibility information on the government website.
You may also want to consider if you are eligible for other benefits such as the Carer’s Allowance.
How do I apply for DLA?
First you need to get hold of the form:
The form includes the information booklet which you absolutely need to read. Forms this big can be really daunting but the information booklet really does help. Personally I found it easier to print out a copy and write out a draft first. Use the Information booklet as your guide to complete the form.
I would recommend having all your relevant reports, letters and documents about your child to hand for reference. For example speech and language reports and/or a diagnosis letter. You are likely to need names, dates and addresses from them when completing the form. They may also help you with things to identify in the form.
If you haven’t already got a file with all your child’s reports this might be a good time to get it all organised. I currently have two lever arch files full of letters, reports and forms and my son is only four.
The DLA form
Completing a DLA form is really hard because it forces us to face, and write down all of the problems our children have in comparison to their peers. It can be a very emotional process (you might need chocolate, wine or tissues to hand).
It is a huge form but the first section is very straightforward and just requires basic information about your child.
DLA Question 20, who completes the statement from someone who knows the child?
There is a section to be completed by someone that knows the child and is involved in their care. For my son we had his Speech and Language Therapist complete this section. You could ask any professional who has worked with your child, or a member of staff from school or nursery. It can even be a friend or family member that looks after you child.
You do not have to include a statement from someone else. However using one completed by a professional involved with your child will be good for your application.
Illness or Disability section
Here are some examples that may help you with this slightly harder section.
Firstly ‘about your child’s illness or disability’. What is the diagnosis? – Autistic Spectrum Disorder (from birth).
Treatments might include:
List anyone who you are working with it could be charities or your local children’s centre.
Other illnesses affecting your child that require treatment also need to be listed. For example, eczema, epilepsy and asthma.
Does your child require aids? This is not just about physical aids (walking aids, supports, ramps), it is any aids required to support your child. For example my son needs picture exchange cards to communicate and visual aids to support understanding.
When answering the questions be honest. If your child is unpredictable say that. Identify the challenges you do have (communication, eating, sleeping, toileting). Highlight the support they need from you that is additional compared to peers.
The mobility section includes lots of yes or no questions so they are fairly direct. Highlight issues you have relating to being outdoors, do you need reins to keep your child safe. Give specific examples – my son ran into a busy road after a ball, he has no awareness of road safety. Make sure examples are brief and to the point. They need to assess facts not your life story.
If your child is under 5 you will get the opportunity to apply for extra support relating to the mobility rate when they turn 5.
The care section is the bit I found most difficult as we have issues with nearly everything listed. You will need to identify additional needs relating to self care including dressing, toileting, eating and sleeping.
Does your child need constant prompting and assistance to eat and drink – or to stop eating, or guidance on what is or isn’t edible?
Make sure you highlight all the things that your child needs assistance with, do they need aids to support communication, do they need supervision to keep them safe from hurting themselves or others.
Think about the development support needed. If they need help to understand what is going on, how to interact. Do they require 1-1 support at nursery or school. Will they require a specialist educational setting?
You will need to include what activities they do and the support required to do them. Such as going swimming may require support getting changed and being held in the water. At playgroups or classes you may need to guide them to understand what to do and how to interact and join in.
About you and extra information
The next section is about you (so much easier). You will need to detail any income support or tax credits. This section also includes the details of what bank account you want any payments made to.
If you are including extra information in relation to an earlier question make sure you note the question number next the the information so it is clear what it relates to.
The supporting documents you send with the form are usually reports from professionals involved with your child and may include letters, reports or documents from:
- Occupational Therapists
- Educational Psychologist
- Social Worker
- Support Workers
- Health Visitors
- Speech and Language Therapists
- Diagnosis letter
- Teachers or Nursery staff.
Although completing the DLA form was difficult it gave me a great base to support my sons targets and application for his Education, Health and Care Plan (EHCP) later on.
For more information / help:
There is also a government DLA helpline you can call – 0800 121 4600
You may find local charities, your health visitor or support workers can help complete the form so it’s worth asking. You can also get assistance at your local Citizens Advice or Job Centre Plus. Personally I found other parents on autism support groups on Facebook a great help.
Many people really struggle with completing forms, if this is you ask for help. I do offer a personalised parent support package which may be of interest if you need some 1-1 support.
Top Ten Tips for completing the DLA form:
- Take your time, read each question slowly and make sure you are clear what is being asked before you answer.
- Read the information booklet before you start.
- Complete a draft copy first, I do this by hand on a printed copy.
- If completing the form electronically make sure you have an editable copy that you can save. There is nothing worse than completing a form and losing it all because it was not the right format.
- Save the form regularly as you go.
- Focus on identifying your child’s needs that are over and above the needs of a child the same age.
- Be honest with your answers.
- Ask your partner or other carers for your child to contribute and help with the form.
- Once completed wait and read it again the next day, this gives a fresh perspective and you can make any changes before it is sent off.
- Reward yourself for completing the form – cake, TV, a bath whatever helps you to relax after its done
When answering the questions make sure you actually answer that question. Keep answers brief and to the point. The answers help to check eligibility against the criteria so making your answer is clear as this assists the person assessing your claim. If you have more information you can include it in the further and supporting information.
Good luck, I got very upset filling in this form but it really has helped in many ways. Let me know how you get on in the comments below.
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