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 but it is well worth doing.
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 non means tested 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 £23.70 – £152.15 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 (day and night).
Should I apply for DLA?
If your child has 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.
Additional Costs
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 additional costs to consider:
- Specialist schools are often further away impacting time and travel costs
- Specialist services / therapy costs
- Attendance at meetings, appointments, therapies all requires time off work and travel / childcare costs
- Visual and sensory aids
- Extra washing costs or food waste if your child has toileting or eating difficulties
- Communication aids such as the Picture Exchange Communication System.
Financial impact
They are all small things individually but when you add it up there is significant financial impact.
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 our 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. 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:
Link to Disability Living Allowance Claim form for a Child.
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.
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 and for renewals his teacher has done this. 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:
- speech and language therapy
- music therapy
- occupational therapy
- play therapy
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. Identify the challenges you do have (communication, eating, sleeping, toileting). Highlight the support they need from you that is additional compared to peers.
Mobility
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.
Care
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
- GP
- Paediatrician
- Physiotherapist
- Educational Psychologist
- Social Worker
- Support Workers
- Health Visitors
- Speech and Language Therapists
- Diagnosis letter
- Teachers or Nursery staff.
Other forms I provided included – Common Assessment Framework – CAF, One Page Profile, My Plan and nursery progress checker.
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:
DLA tips from the National Autistic Society
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.
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.
- Keep a 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. [Note – online form is currently unavailable]
- 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.
If this has been helpful you may want to get my free guide to top 11 autism therapies and sign up for my monthly newsletter here.
Hi ive just received my dla form this morning for my 2 year old who ive been informed is on the autistic spectrum. I opened the letter and was dismayed at form to be honest. So ive been googling and came across your page.
I am dreading the form. Had quick look at it. Im not sure it applies to us??
Author
We were encouraged to do the form so that nursery were able to apply for some extra funding. I remember thinking that I didn’t think we needed it because we were doing the same as any parent of two year olds. You say you have been informed that your 2 year old is on the spectrum, I look back now and see it was probably obvious to professionals that my son was autistic but I didn’t totally see it at first. I think if you are likely to be heading to a diagnosis and your child needs extra support at nursery for example then it is worth applying. If you are not sure wait a bit and see how you feel. It is a massive form and very daunting but actually once you have done it its done. Then any other forms you already have answers for. The form looks worse than it is and its helpful to really assess your child’s needs and face them head on. Good luck and let me know how you get on or if you have any questions.
Our son is five and I’m only filling in the form now. We’ve had a diagnosis for a year, but pre-school flagged up that he might be autistic when he turned 3. I also thought I was only doing what other parents did for their children. What I didn’t connect was that I hadn’t gone back to work because I knew he couldn’t cope with pre-school more than two days a week. He needed a lot more supervision at playgroup so that he didn’t attack other children. He wasn’t potty trained. The list goes on. I guess I was in denial, but I wish I’d filled in earlier. Last year, I would have done it, but all our energy went on getting his EHCP filled in. Thank you for the advice, fingers crossed we get it.
Author
It’s so easy to just live our lives without thinking about how different it might be. The good thing is you are doing it now and hopefully it won’t be long until you get it. Good luck and thanks for stopping by xx
Hello, what a great site. Thank you so much for doing this, very helpful. Also worth knowing successful DLA claims are backdated to the date the paper form is sent out to parent/carer (not backdated otherwise) so worth phoning the DLA helpline to request a paper copy. Also, photocopy the completed form: they can get lost by DLA department and useful to have this to refer to when it’s time to renew the application every two years. Keep a diary of examples so it’s easier at renewal time.
Author
Thanks Maria some really helpful points especially given the wait time can be a while. Glad you have found the site helpful xx
How are you all getting diagnoses so young? We’ve been told he is too young (he is 4), I’m losing my mind unable to cope, can’t work anymore due to the stress. Don’t sleep, don’t want to live.
Author
Hi Rob, so sorry to hear this. Some areas may have a tendency to avoid diagnosing children early but if there is a clear need for a diagnosis there should be no reason to wait. I would check if it is a specific policy for the area and what they will do to provide support in the meantime. If they will not assess now then I would look at meeting with your MP to see if they can push through access to relevant support. Good luck it can be very hard when services are not providing support.
My son got his diagnosis just before he was 3. I took him to see an educational psychologist privately. He see her twice, 6 months apart. I believe this really helped with getting the NHS to assess and diagnose him.
Author
You do not need a postcode or a stamp. Just put this as the address – Freepost DWP DLA Child
One very important thing to do in completing the form is to take all the time you have to complete it well and after that, do this – Reward yourself for completing the form – cake, TV, a bath whatever helps you to relax after its done.
My God, it is not easy at all actually filling the form
Author
Great tips, its such a tough emotional experience doing this form so rewarding yourself is really important.
My son is 2 1/2 and has all the “signs”. He’s non verbal, flaps, little eye contact, doesn’t answer to his name, doesn’t point, doesn’t play with peers, although he will now play next to them, jogs on the spot repeatedly, walks up and down the sitting room all afternoon, he spins round, just to change it up. He point blank refuses to eat “normal foods” the list goes on. He was supposed to have his observation in Dec22 but the woman is off sick so it’s all been delayed. He has a speech and language appointment next week. Do we apply? Like many have said we do what we have done 3 times before. But it is a little different this time. He has a meltdown when he’s tired, hungry, has a nappy change, getting his coat on etc so we just don’t know what he wants. It’s so hard and disheartening because the referral has been delayed for so long. Thank you for this post, very informative. Being disabled myself, I’ve done the PIP forms and this year won an appeal too. So I know how daunting these forms can be. So, do I wait or do I apply? TIA 🥰
Author
I would definetly apply, the only thing you need to show is that your child has support needs over and above children of the same age. It sounds like this will be the case especially around communication and care. I know they can be daunting forms but you know all the answers as its about your child. Do use the information booklet that comes with the form it is very helpful. You can always as a friend to help you with the filling in if forms are difficult. good luck.
I did this form for my nearly 3 year old on the advice from his health visitor, he’s seen the pediatrician, health visitor, physiotherapist and speech and language therapist whom have all said he has autistic traits and global development delay, hes also been seen by the ophthalmologist for having intermittent extropia and now has to wear glasses to try and control it and the podiatrist for being flat footed whos provided him with insoles, he’s awaiting diagnosis iv been told its a 3 year wait his older sister has already been diagnosed with high functioning autism and it is predominant in his father’s side of the family with 9 other relatives diagnosed with autism and his father and second older sister awaiting diagnosis as well, while on my side I have family members with adhd and dyslexia. Since submitting the evidence from the pediatrician and health visitor and filling in the form it was rejected on the basis “he’s just like any other child his age” so obviously with this iv gone for an appeal and am providing reports from all the other people he’s seen and the nursery he’s started I’m just wondering is there something I’m missing or maybe I just haven’t expressed how much additional support he actually needs, are they even allowed to refuse a claim on the opinion of they think “he’s just like any other child” it was easy with his sister as she had her diagnosis but I’m finding it difficult with his even tho he need store support then his sister. Sorry for the rant their response still irritates me.
Author
I am sorry this has happened, often a refusal of a claim is related to lack of evidence. Hopefully you will be able to highlight this in your appeal. The reports/ letters from the Paediatrician, health visitor, physio and SLT should all be included as evidence with your claim. Also it is important that you are highlighting how often you are supporting your child with daily tasks – eating, sleeping, toileting etc. They do measure based on what is expected for a child of the same age so you would need to evidence that your child has needs over and above their peers.
I filled out the entire form for my 2 year old piglet only last week. On the form I wrote a short essay about her main condition which is spina bifida. I described the reason why she has a wheelchair and braces to use at home as well. I even included a mini written paragraph on her current care needs in order to answer one of the tougher non mobility questions on the form. I also wrote out five reasons as to why she doesn’t walk at all.
I stapled two extra copies of her discharge paperwork and old letters from her doctors and therapists to support my claim. I will admit that I had a glass of white wine to drink as I sat down at the kitchen table on Saturday afternoon to complete the form. I tackled the whole form section by section slowly. It took a full hour for me to answer each of the difficult questions and provide them with the evidence. Good luck. Her amazing therapists and doctors guided me through the form.