Can we get child DLA?

penrith

My son is 3 1/2 and has "absences", "fits" and sometimes has odd behaviour like screaming non stop for 20 mins+ . We took him to the GP who said she thought it was probably epilepsy and that we should go to see a paediatrician at the hospital. We have taken him there for 3 appointments over the course of 12 months. The paediatrician says it sounds like epilepsy but hasn't actually diagnosed 'epilepsy' as the problem. The paediatrician says he wants to wait a bit longer before diagnosing and giving any medication because if you give young kids medication it can affect their development and memory.

He also has a bit of eczema and has a soya diet because of being intollerant to normal milk (i still get the cans of soya baby milk from the GP and Kyle sees a dietician there to check his weight). He also had got a very small head (!!) which they are monitoring incase he needs it operating on or if he starts to get !!!!!! (as this shows a problem in his brain). He doesn't have any medication for this, he just has to have a brain scan at Great Ormond Street every 4 months. They are just monitoring this and do not think it is a serious problem.

We went on Monday afternoon and again the paediatrician said he wanted to wait longer before diagnosing. I also took along letter from my son's pre-school, with a list of all the times he had just screamed and screamed or gone unconcious or stared into space and they couldnt make him pay attention. Even with this formal letter from the pre-school, he still said he wanted to wait. :mad:

About 3 months ago the health visitor gave me the DLA form for a child and said we should apply because of Kyle's "fits"/odd behaviour. She said she'd help us fill them in but we never applied because we thought Kyle would need a proper diagnosis from the paediatrician before applying.

He does need watching all the time, we do get up in the night and of course we have to be careful that he doesn't have milk or otherwise he gets really bad tummy/abdomen pains and is constantly sh#tting everywhere. We send him to pre-school for his 3 year old funding and an extra 2 sessions a week 'cos we can't cope with being awake 24 hours a day (me and my son's dad take it in turns).

What i'd like to know, if anyone knows:

(a)can we apply for child DLA without a clear diagnosis of epilepsy?

(b)If we do need a clear diagnosis of epilepsy, can we apply now on the strength of his milk intollerance/eczema? Can we mention he is been monitored for his head size and also mention his behaviour, fits and absences and say we are currently waiting for a diagnosis about this?

(c) would it be easier for us if we just waited until the paediatrician had decided on a diagnosis? (we won't see him until october 2005 now).

I know that lots of people apply for DLA and get turned down and then have loads of hassle when they appeal. I am just thinking that if we apply now we may get turned down. I wondered if we wait longer it may be better in the long run as our application might have more sucess if we get a proper clear diagnosis and prognosis.

Thank you

Ted_Hutchinson

penrith wrote:

....snip.....(a)can we apply for child DLA without a clear diagnosis of epilepsy?

Yes DLA is awarded for the extra amount of care your child needs over and above that required by a normal child that age. If you believe you have to give your child a significantly greater amount of care, attention, supervision to keep him safe then you should apply.

(b)If we do need a clear diagnosis of epilepsy, can we apply now on the strength of his milk intollerance/eczema and also mention his behaviour, fits and absences and say we are currently waiting for a diagnosis about this?

When you claim you mention everything which demands you spend more time caring for your child than your friends spend caring for their children of similar age. You detail it because it needs doing, not because of any diagnosis. A Medical diagnosis is simply a reflection of the state of medical knowledge or understanding applicable at the current time. I've had several diagnosis over the years and most have been wrong. You detail what you have to do. If your health visitor is prepared to assist with the form filling and will support your claims regarding the amount of extra care your child needs then this is the most important thing, The paediatrician's diagnosis when it comes will provide helpful support but while it may assist with the future prognosis and treatment, for DLA purposes it is your record of what you actually do that is most important.

(c) would it be easier for us if we just waited until the paediatrician had decided on a diagnosis? (we won't see him until october 2005 now)

I don't think so. Quite often paediatrician's and Consultants reports are so vague, detailing only the condition and not supporting the detailed care needs, that for DLA purposes they can be worse than useless. Your Health visitor knows the practicalities and is far more use when it comes to providing the information the DLA Decision Maker needs.

You will need the child DLA Physical guide from BenefitsandWork
If your Health visitor will support you with the form filling then don't bother the CAB.

Be prepared to go to appeal. They are sometimes a bit reluctant to take claims for very young children because they know it will be a long term committment. The appeal panels aren't as intimidating as they sound, just real people who have an understanding of disability issues. So explaining your claims to them, providing you are being totally honest, will present no problems at all.

penrith

Thanks for your lengthy reply Ted_Hutchinson.

I've dug out the DLA forms this evening and found there is a date on them by which i was supposed to send them back

After your advice i think i'll be ringing the health visitor on monday to see if she has anymore up-to-date forms and if she is still willing to help us fill them in and sign the part of the forms she said she would before.

Many thanks

Quackers

Ted has given you fab advice.

I just wanted to say please make sure you get some help filling in the forms. It really is sometimes down to the way they are worded! Remember to include every little detail and make sure when you answer the questions you give the 'worst case scenario' as this is what they base their decision on.

We have a local charity group called 'disability solutions' which helped us fill in the forms - we had been refused twice before we had their help - our daughter got it no problem this time!

Try and find a local epilepsy group that may give some advise. Or have a look here:

http://www.epilepsynse.org.uk/pages/info/leaflets/help.cfm

My daughter has 'absences' as well as full seizures - she has been diagnosed epileptic and has been on medication for over 2 years now. Its hard work - good luck & keep smiling

Ted_Hutchinson

DLA CHILD claim form
Try downloading a couple of these. (one to practice on and keep as a copy, the other to submit)
I think (but am not sure) that these are dated. If when you print one off you find they are not dated, phone 0800882200 first thing tomorrow morning and they will post a dated form. I think the Benefit Enquiry Line operates till 1pm on a Saturday.
Important to get the earliest date possible as DLA cannot be backdated but will run (providing the form is returned in due time) from the date on the form. (I think you're allowed 8 weeks but I'm guessing).
Agree with the above poster about the benefit of getting info from others with that disability about tips for claiming. http://www.cerebra.org.uk/ might also be helpful.

Tharweb

penrith wrote:

I've dug out the DLA forms this evening and found there is a date on them by which i was supposed to send them back

After your advice i think i'll be ringing the health visitor on monday to see if she has anymore up-to-date forms and if she is still willing to help us fill them in and sign the part of the forms she said she would before.

Many thanks

There is a date stamped on the form when issued which is 4 weeks in advance. You will have to contact your local Jobcentre Plus for a new claim form. Don't delay in filling it in, you may lose benefit. I know it takes time (I have had to fill one in myself) but persevere with it.

Tharweb

Ted_Hutchinson wrote:

DLA CHILD claim form
Try downloading a couple of these. (one to practice on and keep as a copy, the other to submit)
I think (but am not sure) that these are dated. If when you print one off you find they are not dated, phone 0800882200 first thing tomorrow morning and they will post a dated form. I think the Benefit Enquiry Line operates till 1pm on a Saturday.
Important to get the earliest date possible as DLA cannot be backdated but will run (providing the form is returned in due time) from the date on the form. (I think you're allowed 8 weeks but I'm guessing).
Agree with the above poster about the benefit of getting info from others with that disability about tips for claiming. http://www.cerebra.org.uk/ might also be helpful.

Sorry Ted, was checking my post when you posted yours. Sound advice but 51 pages to print :eek: think I would ring them in the morning.

penrith

I'll ring the 0800882200 number tomorrow (i hope they are open saturdays) in case the health visitor doesn't have a form. i will get her to fill in the 'health professional' part of the form seen as she was supportive about applying for DLA a few months back.

Thank you all for your advice. You really all so kind.

Ted_Hutchinson

Tharweb wrote:

Sorry Ted, was checking my post when you posted yours. Sound advice but 51 pages to print :eek: think I would ring them in the morning.

In this case the claimant has a spare form to prepare/keep a copy, but for others having the ability to print off an identical form for practice/reference is quite handy. It makes renewal so much easier if you can repeat exactly your previous claims and simply update these or modify them as applicable rather than having to start afresh each time. It also makes the "Periodic Review" procedures far less stressful should you be so unlucky as to be selected.

Tharweb

Ted_Hutchinson wrote:

In this case the claimant has a spare form to prepare/keep a copy, but for others having the ability to print off an identical form for practice/reference is quite handy. It makes renewal so much easier if you can repeat exactly your previous claims and simply update these or modify them as applicable rather than having to start afresh each time. It also makes the "Periodic Review" procedures far less stressful should you be so unlucky as to be selected.

Agreed, but I just took a photocopy of the original.

penrith

I phoned today. i asked for 2 forms ''incase i make a mistake in filling in the form''. They said they'd send me a form dated today but the form may take 2 weeks to get to me. I will have 6 weeks from todays date to return the forms (6 weeks is fair enough).