Appeal DLA award or not?

lisak79

Hi all. My daughter Tiana who is 20 months old was born with 2 heart defects, one of which is very rare called Alcapa. Tiana has had 3 heart operations at Great Ormond Street Hospital. In her last op which she had in September 2008 she ended up having a heart valve replaced with an artificial valve and is now on Warfarin for life. Tiana was recently awarded lower rate dla. I feel that due to how behind she is developmentally ( not walking, talking or feeding herself at 20 months of age) and also the fact that she needs constant suprvision due to her being on the Warfarin and has already had a few bad bleeds that she should be on middle rate dla. We got the award through last week and have been trying to decide whether to appeal or not and if so what is the appeal process like and where do we start. There is no way I could put Tiana into a nursery to go out to work (not currently working) as she would not get the full supervision she needs.
Any advice would be great. Also is there anything else we would be entitled to claim?
Thanks in advance

munchings-n-crunchings

Hello,

I think I felt was pretty much in agreement in the thoughts given on your previous thread.

Your problems is satisfying the criteria that the care needs to be 'substantially' more than a same age child without the condition.
With a 20 month old, they all require constant supervision.
As a parent, you are obviously more anxious about the supervision, whereas professionals might be more relaxed about it.

Her development you have mentioned at this stage, would not make any difference to an application, as these are just milestones, that some children will reach by a particular age, while others, with or without a medical condition will reach later.

Do try and give your daughter all the opportunities that she needs.
Not all children go to nursery, but find some local groups where you can go, and be with other parents and children, and this will help with her development.

The final decision to appeal or not, will be down to you.
I think the award is right from what you have said.
When you appeal, the whole award is looked at again, so although your current award does look correct, it too will be reviewed.

Mention your current award to Child Tax Credits, as there may be an extra premium payable if you are in receipt.

Regards

Munchie

cresentmoon

I have to agree with the above poster.

I hope i don't come across as rude, but you have already posted this in the benefits section and also on Bounty (where you were advised to appeal) so you have had two different opinions on the matter but the decision lies with you.

You mention that you feel your daughter is behind developmentally, the best thing for you to do is ask for a referall to a Peadatrician who can advise further. Without medical support for a DLA claim it gets a bit tough to prove it. Also does your DD receive Physio, SALT, OT? If not, then ask to be referred.

I could suggest Portage for helping with developmental milestones but disguised as play time! My DD loved it. It is for children who don't attend a nursery/preschool and ours had regular family groups where you could meet other parents and children.

If your claim for DLA is successful and it goes up to middle or higher, you can claim Carers Allowance, an extra amount on CTC, and you would be eligible for a Disabled Facilities Grant for housing adaptations from the council (though this is more usually for physically disabled people).

HTH

itsnotfair_2

I posted an your previous thread and stand by what I said. A child of 20 months will need constant care and supervision no matter if they are fit or take warfarin. I know as I have brought up 3 children.

Developmental delays at this early age do not warrant a claim for middle or high rate care.

I have a friend who's 14 year old daughter is seriously physically disabled through cerebral palsy and she still has to prove she cannot walk at regular revues.

I also reiterate that taking warfarin does not adversly affect normal life. It is only taken once a day. Blood tests are often only monthly and it has no side effects at all.

The risk from excessive bleeding after an injury is an issue but you would expect to take care that a baby of this age was not injured anyway, therfore they should never be in a position to be cut and bleed.

lolababy

Hi itsnotfair your friend needs to get the consultant to write a letter outlining her daughters condition and of her long term outlook. If the condition is so severe that there is no hope of improvement then the reviews should be stopped.