DLA... for a baby?? And claiming for costs incurred child's illness.

WoodyAllenJesus

Hi all,
My baby daughter (now 8 months) suffered a very serious illness just after her birth which has likely left her disabled. At the moment it's unclear what the extent of those disabilities are, because she's just a baby. She appears to have very little vision and is developmentally delayed and may be brain damaged in other ways.

Although we are regularly in touch with various health professionals - she sees someone once or twice a week for one thing or another (she had multiple organ failure too) - we don't as yet have an official diagnosis or a 'name' for her problems. The specialist eye appointment is not for a while. I am in touch with a charity who come to my house to help her through play, and it was the lady for this charity who said just this week "I assume you are claiming DLA for her"... We'll I'm not. I had never even thought this was a possibility?

Both my husband and I work FT although I'm still on mat leave, so we've never claimed any benefits other than child benefit. We don't even know where to start.

It seems a bit crazy to claim for a baby, I thought DLA was for if you couldn't work? So I'm confused about whether we can claim. Can anyone please advise?

On a related note, we are about £6000 out of pocket as a result of her illness, if we add up costs of fuel, hospital parking, accommodation, my self-employed husband's lost days of work, extra child care for our other child etc. We hadn't budgeted for any of this when we saved for my mat leave. We haven't even thought about if we could try to claim any of this back or where from and if my parents hadn't lent us some money we would have struggled. Is there anything we can do here, or do we just suck it up? I am in a union at work so is it worth speaking to them?

Sorry about the garbled message I am writing quickly whilst she is napping!

Poppie68

https://www.gov.uk/disability-living-allowance-children have a read of this with regards to DLA.

The £6000 spent is i'm afraid going to have to come from your pocket...as you put it 'suck it up'....unless someone else can think of anything.

Icequeen99

There is a really good guide here: http://www.cafamily.org.uk/media/744270/dlaforchildrenfinallastupdated_march_2012_amended_january_2014_web.pdf

It is sometimes harder to show the care needs of babies, because all babies need high levels of care. But this guide explains how to do that.

You should also have an assessment by social services as you may be able to get help from them: https://www.gov.uk/help-for-disabled-child

IQ

Indie_Kid

It may be worth getting social services to help with filling the form in. To claim DLA for a baby (or child) they either need more help than a child of their own age, or the same amount of help as a younger child.

I think RNIB (or Action for Blind people, will have a look later) have published a list in relation to child DLA. It's to do with what a non-disabled child / baby should be able to do at a certain age or something.

Do you have a friend / relative with a baby of the same age with no such disabilities? Only asking because you can compare the needs of each baby and fill the DLA form in that way.

kingfisherblue

I'm sorry to hear that you are going through such a tough time. It's a massive worry when you have a child with severe health problems - I know, as my son was born with Down's Syndrome and several rare conditions that required surgery at nine hours old.

Some people will say that a baby has continuous needs anyway, so it is unlikely that you will be successful in a DLA claim for such a young child. However, my son has been in receipt of high rate care since he was three months old, such is the level of his needs. He is now almost 16.

DLA is not a work related benefit, it is there to help to over the additional costs of disability. Adults can work and still receive DLA.

Yes, it is worth applying for DLA. The criteria is whether your child needs more help than a child of the same age. So, for example, as your child is developmentally delayed, I will assume that she is not reaching her milestones at the usual age. On the forms,which are quite long, you need to detail how much extra help she needs as a result. Eight month old babies can grasp rattles, so if your child can't, you need to write this in the relevant section. If she isn't grasping at a rattle, then she might not be able to see or hear it, she isn't developing her gross motor skills of reaching and grasping, and she isn't experiencing the same enjoyment of play as another child of a similar age.

The forms can be repetitive and tend to be quite depressing, as they concentrate on what your child cannot do. You can get help with them from welfare rights groups (ask at your local council) or your local Carer's centre. It is also worth seeking support from the Carer's centre, as having a child with disabilities can be complicated and stressful, no matter how much you love them. They can also help you with local support groups, toy libraries, and other useful information.

You do not need a diagnosis to claim DLA, as it is the care needs and not the name of the condition that matters. You cannot claim the mobility component yet, as your child is too young. High rate mobility is available from age three, and low rate from age five. Someone will correct me if I am wrong, but I think that somebody with severe visual impairment (registered blind) is automatically awarded high rate mobility. However, I do not know if this applies to children as well as adults.

If you are successful in a claim for DLA for your daughter, and you claim tax credits, advise them of the rate that she is on straight away, as there will be a premium added to the amount you receive. There may also be additional help from charities, especially for specialist equipment. If you are classed as being on a low income (which is doubtful if both parents work full time), you might be able to get help with the costs of travelling to hospital and parking fees for your daughter's appointments.

I hope that despite everything, your daughter brings you as much joy as my son has brought to me.

Take care,

KFB x

ETA When my son was about five months old, our Portage worker applied to the Family Fund on our behalf. We were both working, but in low paid jobs. The FF gave us a grant that included £300 towards the costs of travel to hospital appointments. At the time, parking was free. That £300 was a great help to us in a time that we needed to visit two different hospitals and various clinics so frequently. I can't post links as I am on my son's iPad and I haven't worked out how to do links on this yet, but it is worth checking the criteria for the FF. There is a limit as to how much a family can earn, after which no help is available, but definitely worth a look.

Indie_Kid

kingfisherblue wrote: »

Someone will correct me if I am wrong, but I think that somebody with severe visual impairment (registered blind) is automatically awarded high rate mobility. However, I do not know if this applies to children as well as adults.

As ever, thank you for your helpful posts. Regarding the bit I've quoted:
The rules are slightly more complicated than being registered blind. It also depends on how much vision you have, including visual field.

According to Action for Blind People, the criteria is:
Will you qualify?

To qualify you must:

• Be aged under 65 on 11 April 2011.
• Be certified/ registered as severely sight impaired/ blind
• Have a visual acuity, with appropriate corrective lenses if necessary, of less than 3/60 or
• Have a visual acuity of 3/60 or more, but less than 6/60, with appropriate corrective lenses if necessary, a complete loss of peripheral vision and a central vision of no more than 10 degrees in total (sometimes called tunnel vision).

A child over the age of 3 is entitled to higher mobility on the basis of sight loss if they meet the above criteria.

Regarding parking costs at the hospital:
Have you spoke to the parking office, I think it is. I seem to remember that certain groups of people regardless of income, can claim back the cost of parking if they or the person they're transporting is being treated for a certain medical condition.

kingfisherblue

Thanks for the information Indie Kid. I don't know enough about visual impairment, only what I have read on MSE. I'm sure the OP will find your info helpful, especially as she probably understands the acuity parts much better than I do. Although my son does have eye problems, they are corrected by special lenses, so he doesn't qualify for anything regarding his sight (although he does receive HRM because he qualifies for other reasons).

It's also a good point about parking costs. I can claim mine back, as I receive income support (married at the time of my children's births, but now divorced and a single parent with full time caring responsibilities).

Apologies if any of my posts haven't been clear, or if I have made any errors - I haven't been awake long, as I needed a sleep while my children are in school. I'm still up every night, on average three times, with my 15 year old. He needs a lot of support overnight and I do get tired, hence the daytime doze!

mummyroysof3

You have had some very good advice. You won't lose anything by claiming so it's worth trying, just make sure to fill the forms in detail. My so. Started getting high rate dla at age 3 and I've just filled in renewal forms now he is 5.

PoorCharleyBear

Sorry to hear of your difficulties.
My niece has a baby son who has feeding issues and as such cannot be left unattended except for 6 hours overnight(tube is removed/ disconnected). Because of this she gets DLA for him (has done since he was 4 months)- apparently her hospital social worker advised her and helped. It makes a difference as she cannot even go to the loo without taking him with her...so thats the level of care required in her case for DLA.

Indie_Kid

I can't quite find the link I was looking for. Here is information from RNIB regarding child DLA.

It may help you to keep a diary and send that with your child's claim form. RNIB have a helpline you can call if you need any more help with benefits and other things relating to your baby's visual impairment.

On a side note - is your child registered as partially sighted / blind?

ArtoDeeto

Sorry to hear what you are going through.
I am pretty sure you can't claim DLA for a baby as a baby needs constant care and DLA is for extra care; as a baby needs 24 hours care there can't be anything more then that.