Inspiration needed for arguing DLA (child) stoppage please!

Hello, I’m currently advising a mum who has a 5 year old son. He has had heart problems since birth. He was awarded MRC DLA in 2008. On 17/4/12 he was admitted to hospital to have new stents fitted to open up his arteries but there were post-op complications and he arrested. Long story short - he’s now in end stage heart failure and has been rejected for a heart transplant.  He has remained in hospital since 17/4 but does go home for 2-3 hours per day and all day at weekends but he has to spend the nights in hospital. As he’s been in hospital for >84 days, his DLA has stopped and the family are experiencing financial hardship. His mum wants to argue that DLA should not have stopped because: when he goes home she is still providing the bulk of his care - e.g. administering his oxygen and meds, checking catheter etc PLUS she advises that she does this even when he is in hospital.  Apparently the only reason he is still kept in hospital is due to the fact that he was going to be passed to the ‘Complex Care Team’ for ongoing home treatment but they cannot do this for 2 months.  It seems that the family are caught in a resources nightmare.  I can do the usual income max/grant applications but the DLA issue is really bothering me and I wondered if it can be argued? Any help/ideas would be very gratefully received.

Oh dear what a sad situation.  The only thing I can think of, which you may have looked in to already relates to the daily rate provisions.  DLA can be paid at a daily rate when you are expected to return to hospital within 28 days and both the day you leave hospital and the day you go in to hospital count as days OUT of hospital, so I wonder if you could argue that the daily rate could be paid for Saturday and Sunday? 

Because Carers Allowance is a weekly benefit and can’t be paid on a daily basis if DLA were to be paid at the weekends then your client may qualify for the full rate of Carers Allowance, if she meets the 35 hour rule.

This sceanrio is described on pg 184 of Disability Rights.

The other thing would be a supercession for the higher rates of both components, which could be a bit tricky because of not being paid until someone leaves hospital but it might work if you do in conjunction with the above.

I think it is grossly unjust when parents of seriously ill children have their income stopped like this, when they are likely to be incurring additional costs from being away from home themselves much of the time.

Good luck, let me know how you get on.