Direct payments and evidencing needs funded for 15+ years?

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Hi everyone,

Just wanted to see if anyone is in the same boat here as my brother currently is. He has advanced multiple sclerosis and a number of other health conditions that make daily life a real battle for him.

He's had the bulk of his care paid for by the councils through the direct payments scheme for almost fifteen years, although the family top it up on a daily basis too. His needs are significant but haven't increased at all over the last few years (thankfully).

He was due an annual direct payment review in March, which usually go by without any issues and everything just carries on as established. Oddly they didn't bother to make contact with him, until two weeks ago and have now been out to see him/us and have basically said they suddenly intend to cut his care package.

After a few very angry phone calls, we've pretty much been told that if he wants to prevent cuts he needs to have his carers document absolutely every mortal thing they do for him and how long it takes them to do each task and present it to the social worker at some point in the future to "validate" and "evidence" the needs to justify the ongoing funding.

On one hand I can see where they're coming from, as it's public money that needs to be spent right, but on the other hand it feels so ridiculous. After fifteen years they've never once asked for anything more than a verbal explanation of what support he needs/receives and they've gone away with that and secured funding for another year without a problem. Now suddenly they decide they want documentation to break down his every need by the minute?

I can't help feeling this is all a ploy to try and find some way of justifying cutting his care costs, by saying "we won't pay for this/that's not a valid need" etc. His PA's don't mind compiling a list of what they do in a day, as every penny he's given for care is used for support that's vital to his wellbeing. However, I just feel it's so petty to make a man who's got a condition that is only going to decline over the years he has left, sit and worry that he's going to lose his care and support, if someone random social worker who doesn't understand his situation properly decides his needs don't match up with his funding rate any more.

I have no doubt the council will find some way to dismiss his needs to one degree or another, especially as they haven't seemed to document them in such detail before. It all seems fishy and "nitpicky" and like they are on a crusade to take vital support away.

He didn't ask for a reassessment, his medical professionals didn't and neither did his PA's or any of his family, so why on earth are the council now completely re-evaluating his care after so many years? His GP can't understand it and says he thinks it's "cruel" to do this to him. I don't understand it and I'm extremely frustrated and upset to see him and his PA's worrying about their futures and living in some kind of limbo.

I guess I just want to know if the council really get away with making someone who has a long term established need, with funding set at a certain level for fifteen years, suddenly have to bare all to prove they're still worthy of what they've been getting?

Hoping someone else here can perhaps give me some ideas on how to navigate around a situation like this so I can help him and the people who care for him keep things as they have been for fifteen years. Our family is aging now and it's unlikely any of us would be able to provide him the day to day care he'd need if his funding is cut.

Thanks for taking the time to read.
Someone else here needed to compile a list of activities their caree needed assistance with. It was a recent post. I haven't been able to find it but perhaps another person will be able to recall where it is?
Yep ... that posting is elusive ... tried several without any success.

Plenty of external links describing the role of a family / kinship carer ... but NONE do us justice !!!

Does CHC / NHS Continuing Healthcare enter the frame here ... given the caree's condition ?

Main thread ... colour coded as an attempt to keep it reasonably accessible :

https://www.carersuk.org/forum/support- ... read-35998

As for the " Cutback " in LA support , another victim joining the several million already out there ???

One VERY interest article on this aspect from Professor Luke Clements :

http://www.lukeclements.co.uk/resources ... -payments/


Well worth reading in the context of this thread.

( Now a separate thread : https://www.carersuk.org/forum/support- ... view-38320 )
Your family shouldn't have to subsidise him.
His care package should only be cut if needs have reduced, which with MS clearly they won't. Does the person hassling the family understand the nature of MS?! In Hampshire, they are replacing qualified staff with unqualified staff to save money, the ignorance of some beggars belief. One parent of a child with Down's Syndrome was asked "When did he catch Down's?"!!!
Are you aware of NHS Continuing Healthcare - all care needed free from the NHS. It is a postcode lottery I'm afraid, but worth investigating.
There's a post by Jenne_1907, July 23, 2019, Daily Care/Support Duties... What do you do?

I seem to remember the post including a whole long list of activities of daily living, so there may be another post with that in it...
Further to my earlier post, it's easy to find out if someone is a qualified social worker.
Just go to the HCPC website, and there's a search facility, you just use a drop down menu to search for a social worker, then you type in the surname.
That's the one Chris, thanks.

To compile the list I suggest you look up Activities of Daily Living (ADL). One link is given below.

https://www.kindlycare.com/activities-o ... #section_2

Many ADL articles relate to the American system but the concepts are applicable here too. Don't minimize that the carers check for safety, hygiene,sanitary state of person and home, even if its not explicitly stated in the records.

Carers provide some social interactions too for those who don't go out often or at all.
More akin to paid care workers than family / kinship carers ?

No mention of the doctoring / nursing skills many of us do automatically ... nor the whole zoo of emotional issues which we tackle
without consulting the various textbooks on offer out there.

In addition , ALL carer / caree relationships are unique ... one cannot define a " One size fits all " blueprint as the postings on this
forum clearly reveal.
One of my carees is in the same boat as you say , has a high direct payments budget as he literally cannot do anything, very severely disabled.
Everything was fine he was happy living in the community, an excellent care team which he had for years in a nice flat.
Suddenly the council come along trying to shave a few hours off his care plan, you don't need this, you don't need that.
Same as you his carers filled out years of activity logs, sent off to the council, as per the direct payments rules, 20 years of no problems.
he has a live in carer over night in case of issues e.g needing to go to to the toilet or even worse a fire or something.
Suddenly the council are wanting to put in a night call system, he presses a button by his bed, they phone his carers, who have to get out of bed jump in the car etc, instead of going down the corridor.
Would save the night care costs.
Or would he like to go into care, theres a nice care home just down the road, his reply was unprintable on this forum.
Instead of helping and supporting independent living in the community, the council are trying their best to take his independence anyway, shove him in a care home.
And how about his team of carers dedicated carers who go the extra mile, would all be sacked basically.

This has caused a considerable amount of upset, it was the council who set this up in the first place to live independently in the community. He had been in care/institution for almost 30 years.

They give you a good life on a plate then try their best to take it off you when it costs too much.

all I can say is Care Act Advocacy, local legal rights-Citizens Advice, its really unfair but the councils are cutting costs, they just can't afford high care packages anymore.