DD is in receipt from September 2016, at which stage we had no diagnosis. She receives middle rate.
She has now been diagnosed with a rare genetic condition and we have no idea of how this will affect her future. At 18 months, although she has made some minor progress, she has no mobility at all and unable to sit unaided.
My question, due to diagnosis, could I ask for a review of her rate? We already use her DLA for fortnightly physio sessions, the extra would mean she could get weekly private sessions, which would be massive.
Now Having a diagnosis doesn't make a difference to DLA .... it's based on how the condition affects your child, therefore don't ask for a reconsideration based on that alone. Also, you have to fill the form in all over again ... at her young age I'm not sure if she'd qualify for hrc or the mobility component ...
I'm sure others will be along soon with more in depth help and advice, and more knowledge than me
High rate care is to do with night time need. So you'd need to be up supervising her over approx 3-4 times for over 20 mins each time between 11pm and 7am (these are the guidelines I was told). Even if a child requires constant day time care if they require not much supervision at night they will still get mid rate.
We receive high rate care for ds. We were awarded it when he was 2.8 years old. He is now nearly 5. He has asd and dyspraxia. When we applied he had no diagnosis at all.
1. DLA is about care and supervision needs (not diagnosis). 2. However, some diagnoses help a decision maker to easily see the extent of care needs without long-winded explanations (e.g. quad cerebral palsy with no independent limb movement = total care at all times). 3. The decision on care needs is not absolute, but relative - what they are looking at is the care needs of the child in question compared with a typically developing child of their age.
So where does that leave you? The trouble you have is that nearly all 18 month old children need pretty much total care. So you really have to spell out what makes the care you do additional or different. But you've done that and got your mid-rate care.
Sleeping disturbance is totally normal at this age, too. So getting high rate care would be very difficult unless you were having to be up all night watching over her or administering artificial feeding via tubes, etc.
However, as she gets older, you will find that what is 'normal' is further away from the life your DD leads, and at that point you may well be able to get an upgrade (only if her sleep is poor).
Where your dx will come in useful, it's in demonstrating that this is not going away. That will hopefully give you longer awards so you don't have to fill in the forms too often. DD1 has a squiffy brain (medical term ) on MRI and we first applied at 3, renewed at 5 for mobility, then renewed at 8 and that award takes her through to adulthood (16).
Where your dx will come in useful, it's in demonstrating that this is not going away. That will hopefully give you longer awards so you don't have to fill in the forms too often. DD1 has a squiffy brain (medical term wink) on MRI and we first applied at 3, renewed at 5 for mobility, then renewed at 8 and that award takes her through to adulthood (16).
I always wondered how they decide the length of an award. Most of my friends with DC with ASD have them for long periods. We on the other hand have to renew every 2 years. DD has ASD, severe LD, a chromosome disorder as underlying cause. she is 9 and we have to renew next year again despite all the letters behind her name.
Our current award takes us to just before her third birthday, when we can apply for mobility. I think we will leave the review for now. Middle rate just covers her for two sessions of private physio a month, I'd rather she gets that than nothing, as the Help Desk warned it isn't uncommon for the rate to decrease
Just wish we weren't struggling so, we have also just found out that HMRC have decided they have overpaid us on TC, by £5k?? Of course I have that lying around to pay back in one go......NOT!
Who filled the form in for you. Get someone who knows the system to have a look at it for you (please say you kept a copy) to see if they think it can be improved on. Ds's community nurse did his and we got high rate from the start, or look at the cerebra guide.
And a bugbear of mine - keep a copy of the form. Even if you get a long award the dwp can and do review cases from time to time. Much easier to complete the forms again if you can refer to what you said before and then tweak it as needed
Thanks Starfish, yes I kept a copy on my work computer, as I filled it in electronically. I filled it myself, and our NHS physio completed the part from the carer?
Middle rate helps enormously, I'd rather get that than nothing, most of it pays for her private treatment, we have a little left, we were hoping to add to it ourselves for an additional treatment, but now we have to try and pay HMRC back, somehow, that won't happen. Hopefully once the EHP assessment starts, we might get extra funding? Not sure how that works either, everything is all a blur. Still trying to get to grips with her condition, and she also has scoliosis so they may operate on her this year.
We've been getting about £30 a week extra since declaring her DLA, until HMRC decided miscalculation and have overpaid us just short of £5K?
I work fulltime, DD has been in fulltime nursery but we're having to take her out three days now due to the loss of TC (she'll go to her grans now those three days), plus we'll have to find money to pay it back. I'm hoping they'll accept an offer of £100 a month, because we'll struggle with that