DLA - when to notify them of changes

sweaty_betty

My child has been on home oxygen and a cocktail of drugs to manage a few different problems he has.

We/he was awarded DLA because of this (although the wording on the letter we received wasn't specific, just that he needed help with a number of tasks, IIRC).

Since being awarded DLA, his community team have advised us to stop his oxygen, although we still have it at the house just in case he needs it again. A few of his drugs have also been stopped, subject to a follow-up appointment.

I'm really happy that his health is improving, but not sure what to do about DLA.

My original thought was to make sure he was stable off oxygen and without the drugs, get this confirmed by his paediatrican at the next appt in a couple of months, then notify them (and they'll probably stop the DLA). I thought this because if I notified them now and he had to go back on I'd have to make a new claim all over again.

But now I'm concerned that this isn't the right thing to do. Other people have said that once you're awarded DLA you have it for a year, but my letter just said it would be reviewed periodically.

Any help or advice would be great, thank you

[Deleted User]

The award tells you that they need to notified of any changes, DLA is of course awarded for care/mobility needs, have they changed? Once they have and you are sure they have then personally thats when I would tell them

sweaty_betty

venison wrote: »

The award tells you that they need to notified of any changes, DLA is of course awarded for care/mobility needs, have they changed? Once they have and you are sure they have then personally thats when I would tell them

This is the problem. The letter was vague about the care (although I've taken it to refer to the management of oxygen and drugs). And yes things have changed, but only on a "let's try without and see what happens" basis.

I just don't quite know what to do for the best.

kingfisherblue

How long are the doctors planning to try without oxygen? Presumably after a certain amount of time, if it hasn't been needed, your son will be classed as no longer dependent on the oxygen. It would be at this point I would say there has been a change in circumstances.

Of course, DLA might not stop if your child still has significant care needs, above those of a child of the same age.

Savvy_Sue

kingfisherblue wrote: »

Of course, DLA might not stop if your child still has significant care needs, above those of a child of the same age.

That's the key point! the DLA wasn't awarded because the child was on oxygen or a cocktail of drugs, it was awarded because there were significant care needs.

I believe oxygen does automatically increase the care needs, eg in very young children giving an entitlement to mobility because you have to lug the cylinders round with you.

But has coming off the oxygen and / or the change in drug regime changed the care needs by much?

tomtom256

sweaty_betty wrote: »

My child has been on home oxygen and a cocktail of drugs to manage a few different problems he has.

We/he was awarded DLA because of this (although the wording on the letter we received wasn't specific, just that he needed help with a number of tasks, IIRC).

Since being awarded DLA, his community team have advised us to stop his oxygen, although we still have it at the house just in case he needs it again. A few of his drugs have also been stopped, subject to a follow-up appointment.

I'm really happy that his health is improving, but not sure what to do about DLA.

My original thought was to make sure he was stable off oxygen and without the drugs, get this confirmed by his paediatrican at the next appt in a couple of months, then notify them (and they'll probably stop the DLA). I thought this because if I notified them now and he had to go back on I'd have to make a new claim all over again.

But now I'm concerned that this isn't the right thing to do. Other people have said that once you're awarded DLA you have it for a year, but my letter just said it would be reviewed periodically.

Any help or advice would be great, thank you

This is the important bit for DLA changes. As you think his health has/is improving then there has been a relevant change for DLA purposes.

Ring them and discuss as the care may still warrant an award, it may be reduced etc but better to be safe than sorry.