Trying to do the Best for your Child (DLA)

When you have a child there’s no doubting that financially it’s a large commitment, one that you can’t really comprehend. Some people try to save up and make sure they can “afford” a child before they have their first, or subsequent children. Some things inevitably you cannot predict; how many days off sick your child will have, for example, and when both parents (or the only parent) work this can further complicate things.

Our Youngest Son is 7 Today!

There’s a lot of controversy around Child Benefit at the moment. Up until now everyone has been entitled to claim it – and I imagine a good percentage of the population has. There’s never been any (or much) question about whether we should, in effect, be paid to have children. It’s not really been seen as a “benefit” by the large majority – the way that say income support is. It’s been acceptable to claim because it’s “for the children” and you can (could) still claim it whilst working. In fact you can technically claim it still but have the money taken off you – but it protects the National Insurance Credits.

In fact, I don’t really understand people being so negative towards people on Benefits – without actually knowing the situation and what causes people to claim. They may say about how the “system” is wrong, but I’m sure people don’t want to be in this situation, and instead of “benefit bashing” them then maybe it be should petitioned for a “better system.”

So why is it that parents of children with a disability have to justify claiming disability living allowance? Or maybe I’m wrong, and there isn’t a stigma. There’s no “but you decided to have a child” so why should you have money for caring for them (those whose children need consistent supervision, so receive middle rate care, are also entitled to money for a carer, carer’s allowance). Many people will not claim for their children, and agree with the people who say it is not morally right. It is up to you to decide how much your child may suffer without this help. Can you afford not to take the help for this unexpected extra financial pressure? This benefit is also non-means-tested related – meaning you can work and claim it.

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Disability Living Allowance rates vary between £21.80 and £139.75 a week, to help with the extra costs caused by a disability. From 8 April 2013, a new benefit called Personal Independence Payment started to replace DLA for disabled people aged 16 to 64. (Over 16s can still have their parents claim for them, but the DWP will want to see you and your “child” to determine whether they need you to or not).

Don’t feel bad for claiming. And in reality, if the Department of Work and Pensions decided that your child does not need extra care then they will turn your case down. And is it really morally wrong to seek help – as long as the money is actually going on the child’s needs? So I really urge you to apply. It can only benefit your child.

On speaking to a friend, I can also understand how it is unfair on parents whose children are off school/ill a lot but do not meet the DLA criteria but cannot get help. I completely agree that they should (if their children are being effected by their illness in the same or similar way to a child who is eligible for DLA but cannot claim because they don’t fit the 9 months criteria below) be able to claim “something” to help. Maybe this is something the Government could consider.

When filling out the form consider:

Days when your child is sick – how you’ve had to pay for childcare regardless of whether your child attends or not – but more often than not they don’t attend because they are ill. Or going backwards and forwards to school to check if they are okay, or pick them up early. Time off work to look after your child because they are ill, to attend meetings, medical appointments. This is over and above what ‘other’ children are – and is related to the disability (such as a heart problem, bad chest etc). How about extra medication? Fetching it from the doctors/chemist, making sure it hasn’t run out, making sure it’s given at the right times.

How trips to hospitals – especially miles and miles away, cause greater expense in fuel, parking, days off work, sorting out other child care. Never mind the emotional upset and worry it can cause. Again make sure you relate this to the disability – for example needing to travel to specialist places.

Our Youngest Son is 7 Today!

Extra equipment – from wheelchairs, to special pushchairs, down to sensory blankets, special plates, etc. Really think about things you have bought that your child could not deal without. It’s not only the equipment that you do have, it’s about the equipment that could improve their quality of life, so that it is more in line with their peers.

Clothes – if your child needs their clothes replacing (maybe they suck holes in them because they are a sensory seeker); or maybe they need specialist clothing because they cannot do buttons, zips, or need to be specially designed because they are physically disadvantaged and need special clothes designed.

Social Groups – that if you didn’t encourage them, take them, support them – then they would isolate themselves. Remember to say why this is important – for self-esteem, social development etc. That again this costs time and money. You may have to buy a uniform for them and then they may only do it for a short time. I appreciate, again, that this can happen with any child, but if they have a social and communication interaction disorder then this is more likely to happen.

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Extra cleaning products – to tidy up after soiling or smearing for example, or because they are unable to eat without making a mess.

You do not need a diagnosis to have your claim accepted, and a diagnosis alone wont mean it will be accepted either. You need to have had the difficulties for 3 months and expect them to have them for a further 6 months. Therefore, they do not have to be “disabled” just have something that is “disabling” them for at least an expected 9 months – in either their care and/or mobility.

Remember it’s all about – what is the condition? – how does this effect them compared to their peers without the condition? How can this be treated? What would be the consequences if they did not receive the help? Always give examples to help back-up what you are saying. Make it clear how often and for how long your child needs the help. Make sure you include “evidence” – letters, reports, etc. Make sure you fill in all the contact details for all professionals you are seeing, prescription repeats to show medication.

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If you ring them and have a paper form they will back date it until the date it was sent out. Personally I find it a very emotionally draining and long process to do the form and prefer to do it on my computer (you can do it online or print it off). Not only can I take my time but when it comes to renewal I can copy and paste over any things that have remained the same as last time. This is also easier if you make any mistakes.

Get someone to fill in the form where it says “Anyone else who knows your child.” I tend to go for the most professional/qualified person (in our case the paediatrician), but you may want to go for someone who understands your child’s needs more, or who can better explain them. Don’t worry if there isn’t anybody who can fill in the section – just send it off anyway. You can also send in supporting evidence after you have submitted the form.

As I say it is emotionally draining to think of all the ways in which your child is “different” and needs help. For me I don’t even like to think of my children as “disabled” so the name of the form itself is upsetting enough. Keep a diary, that way you can jot things down as examples for the form and wont need to think too hard about what they are. Maybe treat yourself – even if it’s just to a relaxing bath, for when you have filled out the form too.

Other sites of help:

Disability Alliance

National Autistic Society advice on DLA

Cerebra Guide to applying for DLA

33 thoughts on “Trying to do the Best for your Child (DLA)”

  1. With young children it seems to hard for some severely disabled children to actually get any support. A friend with a similar age toddler to mine has spent much of the first 2 years of her daughters life in and out of hospitals, trying to get local support fro special needs nursery/groups, only to find several times she’s been turned down for help. She’s had to give up work, to take her daughter to all the physio etc she needs, the only nursery that can take the child is too far to walk so needs a taxi which they can’t really afford, and she’s essentially been told she’s not disabled enough…she is virtually blind, developmentally around the age of a 9m old, and is only just walking. It’s insane. It’s only by fighting hard that she’s managed to get this far and find a good nursery and social groups for her. Most people would just give up.

    These are the type of people who should be getting the support instead of some people who’re holding on to theirs when they no longer need it, have got well enough to work but don’t etc.

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  2. I have just sent in my claim for DLA, I have been putting it off for months, making sure the claim is correct before i send it. I finally have and sent all the info and notes i have. My son is very challenging and we have know since he was born. He has done the Connors forms and they have yet to say what is up with him, but in the last note says he has scores in all 4 sub categorize on the forms, but extremely high in ODD. As well as this, leo soils his underwear/clothes he has toilet issues and hes told to spend at least 5 mins on the loo and blow bubbles as he does not empty himself, and will go back and forth otherwise. he has a rare skin condition vertigo where he has to have sun cream applied all year round, even in the rain! He has to have someone at school help him even though he is 7. He is unable to eat somethings that are very rich. His skin condition does not allow him too use toilet roll, as makes him bleed and red. Lately they have found issues in his blood, which is being looked into but say it could be arthritis, and he is just very challenging. – Do am not sure if we will get awarded any DLA but any monies from it will be used for activity’s for leo to attend as he is not very social, and will put rest into a savings account for when he is older.

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    • Hi Emma – I realise you posted this over a year ago, I wondered how your son is doing? The Vitiligo you mention is autoimmune, there is also an autoimmune type of arthritis and that would explain the serum analysis (blood results) you mention. We have a love of AI conditions here too so my heart went out to you! Hope you are in a better place, I have one with ADHD which is definitely exacerbated by his AI conditions. xx

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  3. What a great post and so informative. No one has the right to say what anyone else should or shouldn’t claim without knowing their circumstances. The whole process is so complex I hand it to anyone who figures it out!

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  4. Firstly can i say what a fab blog and so well written 🙂 I understand everyones situations are different when claiming benefits but i believe myself it is morally wrong to claim something JUST because you can and at the end of the day if you have enough earnings u shud be supporting ur children urself.As you have said everybody has been entitled to child support no matter what you have earnt which is a BENEFIT and shud be grateful of that .But lets be honest we choose to have are children (understandably things happen we dont plan for but not 3 4 or more times) u shudnt be relying on the benefits system to bring your children up.Again i think its great that there is a benefit out there to help those who genuinly need help with children who have special needs but if people claim it that dont really need the finacial help then sadly is that only taking if from those who do ??I find it very sad that all children with or without any actual medical or diognised problems have issues growing up weather it be terrible shyness or living far out from school friends so loneliness but parents are on just enough earnings not to be able to claim anything apart from the child benefit these are the children who miss out on lots of extra activities in and out of school because there parents can not afford to send them.The children are by all standards (normal) there parents still live together and dad works full time .Also i believe as this money DLA is to make life more normal or bettter is some way for the child then parents should have to provide some sort of recipt or proof the money has been spent on said child im sure no one would have a problem with this if the money was being spent as it should .

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  5. A brilliant post. I know I felt awful when we first applied for it but with encouragement from his health visitors, key workers and charity I realised that it was the right thing to do. We have a Motability Car and sometimes get sneered at and told that we’re “Lucky” to have a new car. A car is a car, it gets us from A to B and is essential with my son’s condition and hospital visits over five hours away, however I would give anything to swap our car for my son to have a long and healthy life like other children. I wish people could see it that way.

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  6. Great post.
    I have three children, two with autism spectrum disorders. My son has ASD and an anxiety disorder which has led to spells of agoraphobia and long absences from school. My daughter has aspergers syndrome and learning difficulties and is also out of school. As a result I cannot work and spend most of my time caring for my children. Without DLA (which I get for my son) I would not be able to concentrate on caring for them and would have to look for work. If I had to work then who would care for my children – the state? I’m sure if the state had to get involved the burden on the tax payer would be a lot more than providing my family with an allowance. Furthermore, I used to work outside the home and have paid tax and NI so I feel justified in expecting the state to help me now that my family are in need.

    Regarding Kate’s comment about providing receipts as to how DLA is spent on, I find the idea degrading. Why should disabled people have to expose their personal lives to justify this allowance? Its intrusive and deprives that disabled person of the dignity to live their lives how they want. Furthermore disability is complex and how DLA is used depends on the nature of the disability. To bring in another layer of beaurocracy would lead to more costs which surely defeats the object.

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  7. As I’m in Ireland I don’t know so much about the UK system, which seems even more complicated than ours! But this reads like very good advice, well done x

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  8. Fantastic post very informative, So many things to consider when applying for any type benefit. You can also get help filling the form out if you book an appointment with the CAB.

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  9. I never had any children so have never had to deal with any of this-from what I have heard from others it can be a nightmare. People don’t choose to have disabled children and the children don’t ask to be born disabled. They definitely need extra help from society. They should not have to be forced to jump through hoops to receive that help!

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  10. Fantastic article and I couldn’t agree more, I have a good friends who has the best little boy ever with downs and she needs help with him. She has another son with a form of autism, as strong as she is, she deserves the help she receives:)

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  11. I totally agree i have a close relative that has not wanted to claim DLA however her daughters disability has meant she has had to give up work completely which has caused a massively reduced income to them plus the extra costs of hospital visits, clinics and special care. Yes she chose to have a child but she didnt choose for that child to have a disability

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  12. I’m amazed that people think that parents of children with a disability shouldn’t get some help. I’d agree with widening the net as I think the criteria probably excludes people who need the help.

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  13. What a wonderful post. People who look down on those who claim are really, really fortunate in the respect that they have no idea or understanding of what it is like living with children with complex disabilities. I wish I had no idea too – I love my children to the moon and back but caring is now my life. Also, without sufficient input in their formative years disabled children can become isolated and go on to suffer (a much higher incidence of) mental health disorders, which ultimately cost the State FAR more.

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