DSs DLA - I can only save a bit of it... What do others do?

[MrsShrek3]

It pays for the extras he needs, allows him to do out of school activities, and we bought a huge amount of equipment like netbook, dictation software and other equipment for him. He needs some stuff to be duplicated like glasses, PE kits, none of which come cheap.
However, a portion of it also covers household expenses. I work p/t (was in senior management until his needs became too difficult to juggle with my job)
Is it always about compromise and making sure they've got what they need - or do people save it for their dcs bank account? I think I'm having a big guilt trip moment.

I cannot save it it goes nowhere near covering all the extra costs DS 's disability brings. Spend it on things he needs.

Same here - one of us had to give up working full time as DS' needs could not be met otherwise. Nigh on impossible to find out of school care for a 5' 10" potentially violent 14 year old.

Not to mention all the things that need to be replaced / get damaged...

Our foster child just been awarded DLA and we discussed with his SW and agreed some money to be spent on extra washing and tumble drying sheets as incontinent etc, lost PE kits, activity clubs on weekly basis and rest to be banked in separate account for anything else he needs for his additional needs or education etc. Anything over £50 must be agreed with SW but smaller items can be purchased as and when he needs them. We must keep speadsheeet record of all spending and receipts for over £50. We are to bank anything left for either larger purchaces as he will need them or for his future. I am quite glad of the guidelines as I was worried obout how we could spend it and did not want to be accused of not spending it properly. We were told we could buy in help with cleaning to allow us to give undivided attention as he often needs this and housework suffers or meals out if had a bad day and too drained to cook meal. I was led to believe saving about 15-20% for his future would be considered good. I hope this helps. We were told it is mostly to be used for things to enrich his childhood and so does not miss out on things other children may be able to do more easily, but to save anything he does not need. We were specifically told not to save too much as it would be deemed he does not need it.

I was told not to save DLA as DS is likely to need some support from benefits in future and it would just end up being reduced if he had too much capital. Although DS is autistic, he is quite passive and we don't have the increased costs of broken equipment like many parents do, and we get therapies through his statement so don't have to pay for private therapy. But we use it to make life more comfortable for him, paying more for things like holidays and activities where we'd otherwise be forced to budget.