Disability-related expenses (DRE)

So much depends on circumstances. Someone living in a small fully staffed supported living home will not have the same costs as my son living alone with carers coming in. He has to buy all his white goods, pay for accommodation for who is supporting them, all the costs that person incurs on the holiday.

Bowlingbun, could I ask what FB group that is? I’m always looking to join pages offering suggestions like this.

And also what ballpark we’re talking for a weekly funding figure that’s getting written off?

I’m sure council will be reluctant to waive charges on large care packages, so it’ll be interesting to see if anyone’s having success there.

Adult Social Care Warriors. Of course none of us should need to be warriors to get what we are legally entitled to. My son in theory has a large package but he never gets all the hours he is entitled to. Steam engines are his only hobby, but no one suitably qualified supports him unless he comes home. I’ve been driving our steam roller since I was 19, at 23 we were shipping steam engines to the UK from Australia. I have national awards from the National Traction Engine Trust. Once we bought our own low loader we went to shows every summer weekend, I became the nation’s expert on these lorries (!) but Social Services neither find anyone suitable and if I don’t support him he doesn’t get a whiff of steam. Often his “activity” is walking to town and having a cup of tea!!!

Thanks, Bowlingbun!

Two of my caree’s haven’t had any funding for social inclusion/outside activities since 2017. They’re stuck indoors because social services assumes family will take them out and about for free but their needs are too high for family to handle it alone now.

We keep asking for a few extra hours to employ someone to come in and get them out to local groups/events, but the answer is “there’s no more funding available, you’ve reached the upper limits.” Pretty sure that’s unlawful, but to tell them that is like banging your head against a wall.

Yes, it IS unlawful to set an upper limit.
Make an FOI, Freedom of Information Act, asking for details of the banding limits, so you have it in writing. They must respond within a month.
How many hours does your carer have?

If they’ve told you that you’ve reached the “upper limits”, ask for a written explanation of how they reached that decision, and when the policy was voted on by the elected members.

They can’t. There is no legal upper limit for care. And any policy would effectively admit to refusing to meet needs. So I can pretty much guarantee that they’ll refuse such a letter and have never put anything in writing about “upper limits” - because a good solicitor would have a field day with that. Budgetary concerns do trump needs in certain circumstances - lots of legal precedent for that - but a POLICY to set a limit must go through the local council’s elected members as they are liable for the actions of their officers. And the policy must explain how this impacts on their Equality Duty.

Of course the council relies on telling people things that cannot be true assuming that carers are unaware of their rights.
As it says at the bottom of all my posts, information is power!!
I once reclaimed £8,000 from Hampshire as they hadn’t applied the charging rules properly.
Challenging a council can be successful.
I challenged their Education Department, appealed to the Secretary of State for Education, who told the council to pay for the schooling my son needed!
Courage costs nothing. Nothing ventured, nothing gained.

To be honest the banding info has left me scratching my head a bit in the past, but a friend of mine submitted a FOI for the weekly costs of domestic care/support through DP’s to see where their caree’s package stood…

Based on those figures (which include on-costs) my caree’s package is a drop in a bucket. They come in about £100 above the average weekly cost to the council, and the highest weekly care package is in the thousands. So the social worker has clearly been economical with the truth in how much more funding could be accessed/agreed.



The caree who was told this has a copy of their annual care plan completed by not one, but three (in consecutive years) different social workers, stating in the plan that X or Y couldn’t be covered because my caree has “reached the maximum provision”.

This is something they’ve always maintained during reviews too. Whenever we’ve asked for more support for social inclusion etc, “the care package is large already/there’s no more funding”. Never thought to ask for them to explain why exactly, but the next time that’s said to us I will take your advice and ask them to explain themselves.




I totally agree.

Trouble is, caree doesn’t want to challenge things because previous social work. ers have put the fear of God into them that they’re “very lucky” to have what they have, and that disputing any charges or limits, or getting a financial reassessment, will result in them having to pay more/getting less.

So they don’t want to rock the boat, and since they have capacity, I can’t really step in and do it for them.

Please see post here https://www.carersuk.org/forum/news-and-campaigns/campaigns-petitions/scrap-social-care-charges-website-45391 re scrapping social care charges campaign.

Melly1

My PIP money is spent on buying adaptive equipment for my home in order to allow me to
live independently. I live in Surrey near London. Some of the money also is used to pay a handy personal assistant to come and teach me how to cook my own healthy meals and get some fun exercise as well. We also do some travel training and looking at courses etc. She comes to the house only once a week nowadays.