Direct Payments for Care - Anyone had these?

Round here courses are being organised along side a group session for the carees as a result of a bit of a shakeup and are being run over ten weeks. These are not up and running yet but we are hoping to they will be started soon.

Kitty The big problem I have found with all the carers' support/info groups is that no provision is made for the 'cared for person'. Although there are many groups, some for the person with dementia, some for the carers (and some for both) there is little synchronisation. I have been able to attend about half the sessions of a ten-week Carer's Information Course, always arriving late because I had to drop off DH at Day Therapy at 10am on the other side of town. I became aware that I was the only one in a group of 10 who was actually providing round the clock 24/7 care, all the other people's relatives were in residential care, hospital or had another capable relative/friend at home who could take turns in providing care.

I know, anecdotally, that in some areas groups are scheduled for both carers and 'carees' (for want of a better word) at the same location. Locally the problem seems to be that the Area Alzheimer's Service is based in the city but covers also two major towns, loads of smaller towns and villages and a huge rural hinterland. With limited staff it is not possible to run 2 linked groups simultaneously.

There also seems to be a chicken and egg situation whereby very few full time carers attend groups so the groups are geared towards the needs of part-time or long distance carers. I have indicated several times that a course in the evening (when DDs could Dad Sit) would suit me (and carers who are still working) much better, but the response was that those who DO attend much prefer the daytime, older people don't like going out at night, etc. etc.

Having said all that, the parts of the course which I did attend covering LPOA, Finance & Benefits, Pharmacists were very helpful. I missed out on the (FREE) Christmas lunch because it had been moved to a larger venue to accommodate the large number who had booked. This had been discussed the previous week when I was not there and I turned up at the usual venue, all dressed for the occasion and carrying my Secret Santa pressie, only to be told that the Group was meeting 'elsewhere' but the Community Centre staff had no idea where. Boo Hoo!

I am sure that some are excellent and probably June Whitfield can afford the best. However, hearing some of the stories of less than adequate ones is worrying.

There's almost 2000 people on the local waiting list locally for urgent assessment far less provision of free personal care. Finding good carers even with direct payments is a major problem.
On a more positive note I read an article about June Whitfield and how happy she is in a care home. She loves the company and freedom from worrying about all the various aspects of living in her own house.

Yes, I was thinking of more of a living will, or a statement saying what you would want to happen in the event of our mental incapacity.
But, of course, the way care is provided and/or financial circumstances etc could change and perhaps we all avoid thinking about it when we are able to do so.

As my dear friend used to say 'Old age doesn't come alone'.

AgeUk and The Alzheimer's Society vhave lots of useful information.

Alzheimer's Society run Carers Information and Support Programmes - a series of sessions that cover coping with the person you are caring for, benefits, pots, looking after yourself and what is available in the local area. They also offer an opportunity to meet people in a similar situation.

I think these are nationwide. Every single person who has been on the ones I help with says they have been really helpful.

BUT, they are not 'pushed' enough. Gps and consultants, in my experience, are hopeless at giving people information as well as a diagnosis.

Even if it is not applicable to you - please spread the word!

I am not too sure of the facts here Jalima, but it looks as if the mental incapacity act was updated in both 2010 and 2011. I imagine this is at least partly because of growth in the numbers of people with dementia. It becomes impossible to know you need help when you have so little knowledge of what you have done and difficulty working out how it affects you. Eventually someone else has to make some decisions for you.

Granny23 that is another problem too - persuading someone (or perhaps telling ourselves) that we may need to accept personal care and help.

I'm sorry that I don't have any helpful answers, it's a long time since I was faced with these dilemmas.

But perhaps we should make ourselves aware now, as we are all ageing and may be facing these problems ourselves sooner than we may expect.

I think it is all the detail that is difficult to find Granny23.

As they say, getting older is not for wimps!

In Scotland we are entitled to free personal care for the elderly which can be accessed via Health Service or Social Work. Social Worker explained about the direct payments system but advised that it is tricky due to lack of commercial provision locally and LA services are more reliable.

The free personal care is really not appropriate for us because I do all the help with washing and dressing stuff, cut toenails, etc and DH would not allow strangers to do these things. Where I could use some help is with all the tasks that DH used to do, cleaning windows, reaching high shelves, (he's 8" taller than me!) sawing logs, climbing into the loft, cutting grass and hedges , etc. Fortunately at the 2nd attempt we have been awarded Attendance Allowance at the higher rate which will go towards paying for a window cleaner and occasional help in the garden. DH has also been awarded a place in Day Care once a week from 10.15 till 2.45 (so really only 4.5 hours) which is free for the care component but you pay for food and outings. Similarly, DH is to have respite care, starting with a 3 night stay in a LA run care facility, to see how he gets on. Again the care is free but the 'hotel charges' are quite steep, although means tested (we do not qualify - too much in savings). I have applied for the 25% reduction in Council Tax.

I am sorry to go into such detail but I did so in order to illustrate how complex the system is and how the criteria varies for each benefit or service. How anyone is expected to claim these things on their own behalf if they do not have a relative, POA or carer to guide them is quite beyond me. My DH is still expected to complete a tax return annually, which I can do on his behalf as long as he signs it (I have always done his admin) but when I queried with the Tax Office how someone with Dementia is expected to do this themselves they simply said he would have to hire a tax accountant!! He only pays between £200 and £300 of tax pa and I pay none because my income is below the threshold.

The CAB is your friend in these matters,because of their knowledge of the wider benefits and tax systems as well as the intricacies of things relating specifically to the elderly and disabled.

M&S do ready meals for older people. They tend to be in smaller sizes and are the sort of old fashioned food that seems to be most familiar for older people eg lamb and sliced potatoes, gammon in white sauce, liver and onions etc. My MiL and my Mum weren't pasta and curry sort of people!

Lots of people haven't heard of that one - even the councils!!

I think it is always worth swapping knowledge of these things though kitty because you never know what you don't know. She gets a tiny bit of Pension Savings Credit - she is just above the Pension Credit level. The important breakpoint for getting help with care seems to be the savings you have. You will, as far as I can see, be considered if you have savings under £23,000. She does get the higher level of AA but the one that really surprised me is that she could get exemption from Council Tax because of severe mental impairment. As usual it was lengthy but it all helps.

I assume your mum is getting attendance allowance gg? And the Severe Mental Impairment council tax relief? Pension credit? I'm sure you are on top of it all but thought I'd check.

It is such a minefield whitewave. I think that we can used the money a little more flexibly if they pay it into a Direct Payment account.

Jalima I don't think it is because they assume you will employ someone directly. You have the choice whether to use an agency or employ directly. It is, I think, what they pay per hour. I know our agency said they used to be on the SS preferred list but they couldn't make it work on what they paid so I think Social Care actually pay under the going amount. They know that people will make up for this if they pay directly, either by doing more themselves or by contributing to the account. For us, I think we need to look at everything and see if we can make the money mum already spends (obviously I do, in fact, but you know what I mean) by adding it to what they will contribute. It's a good time for a reassessment - I just hope it doesn't take to long.

Whitewave, you should get a careers assessment. That's if you can find the time. The trouble is we are often dealing with these things after an emergency or a change in how our loved ones are coping so are full steam ahead on their behalf. No time to fill in forms for ourselves.

The meals on wheels I was looking for are the ones delivered hot. That might mean I could transfer some of the available money to the morning and give mum a better start. Some carers will do some housework and if we could roll that into the morning call it would move some money around - not a lot but in the right direction. If they can be there she may trust them more an more to help.

I hope you understand what I mean by this but I am so glad there are others who don't find it easy - it feels a bit like madness at times.

gg like you we are and have promised that mum doesn’t go into care. She is such a bright, intelligent and independent person, and I think a care Home would kill her. But at the same time it has been very difficult to persuade her that I/she needs help. But she has finally seen the light. So everything is crossed that we can get some help.

I did look at charges if we did it independently and it would be impossible,

For basic say making the bed tidying up etc. £17 per hour and after that the charge goes up and up.

Mum is exceeding frail now so will almost certainly need personal care before very long.

I was just thinking that was about the cost of my mums food too.
I think we changed because this company did more pasta based foods, which seemed to be better when reheated. Finding out they did shopping too was wonderful!

Mum has “martins hot meals” it works out for a full week (which she doesn’t have because I cook lunch for a couple of days) with pudding £49 per week which I don’t think is bad. Lots of choice, plain as you’d expect but perfectly adequate.

gg it seems to me that it falls into different categories.

So far I’ve established that there is a Care Act 2014 which I have to read before the social worker turns up. I think that it is important to know exactly what you need, and your entitlements. I very very briefly skimmed read the Act a bit and did see that thecsocial worker must also give consideration of the career.

I was shelving it until after Christmas, but I’ll post what ever I glean, and perhaps you could do the same?

There are a few alternatives to Wilshire foods who are comparable. I found it worked well with my mum.
I can't remember the company we settled on, but they also delivered shopping of all the basics.

Is the reasoning behind it that there would be more money in the pot if an agency is not taking a cut? Otherwise, it seems like adding one more worry to what is already a stressful situation.

Does the 'meals on wheels' service provide a hot meal or do they come weekly with frozen meals which then have to be re-heated? MIL could not cope with that, could not fathom a microwave and we were too far away to be able to take her a dinner each day.
It is a worry.

An elderly member of our extended family has Wiltshire Farm Foods - but they are delivered frozen. He said they are very good.

We have had a 15 minute visit which worked for some time but mum was paying for that. It was to 'make her medication available' and, to be honest, see is if she was still with us and hadn't fallen.

Since then mum has deteriorated and we have more alarms but this this time they are offering proper time. Even so the direct payment seems a good idea because they do have a set idea of what a visit should be.

Started my research and found we don't have an actual meal on wheel in mum's town! There is a company that does them so I will find out about that when everyone is open again.

MiL died a few years ago now. Before 'austerity'. What she was offered 'free' was a 15 minute visit in the morning in which she'd be got up, washed, dressed, breakfasted and put on a bus to a daycare centre. Afternoon visit would receive her from the bus, get her ready for bed and given supper. How they could co ordinate with the bus is a mystery. They couldn't guarantee that there would be any continuity of staff or that she wouldn't receive 'intimate' care from a male assistant. It sounded ridiculously unsuitable as well as unfeasible hence our application for direct payments so we could employ a regular carer. All too late of course.
These were the 'good old days'!

I have decided my job next week is to find out how much the Social Care amount is (I believe it is under the hourly amount most care providers charge) and then contact providers and ask what they could provide and how much they would charge. We already have carers coming in for 1/4 hour first thing that Mum pays for so I can add that amount into the mix too. I can see it would be better if we do it but I think it would be easier to do it through a care company. We will just have to be as clever as possible to get the most for mum I think.

Thank you for the flowers Nina. I bet there are many on here who are caring and I will pass additional bouquets on to them