Hi,
In brief, I work in adults LD and I have a service user who has profound LD - he can't walk unaided, he can't speak, he is incontinent, cannot be unsupervised, needs help eating, washing, and is registered blind. Although I don't know him well, it seems likely that he has no or little mental capacity in any area.
His family wanted a personal budget for him so that they could put together a support plan for him and use the money themselves, as his trusted carers. He is at present fully supported by them and they are not interested in respite, which is perhaps partly for cultural reasons (I've found the same with several other Muslim families who see it as their duty to care within the extended family).
The family do not want him going to the local day centre which specialises in supporting/educating young adults with profound end LD and other accompanying disabilities. They say that they could spend the money in his interests much more effectively, and when they visited the day centre, they did not feel he would be happy there. I have no reason to think the service user feels differently from his family.
Because he clearly meets the critical part of the FACS criteria, he should be eligible for quite a hefty personal budget. The rhetoric from the council, and all our training, suggests that he should be, and in that case he's an ideal candidate.
Even with a hefty personal budget, it would cost *FAR* less than sending him to the day centre.
HOWEVER....
The same boss who sent me on personalisation training has declined my panel request for a personal budget on the grounds that the council has a 'block contract' with the day centre already, and as the day centre clearly meets his needs, we cannot 'double fund'.
What happened to personalisation? So in other words we're saying day centre or nothing. It's ironic because in the past he's declined a panel request for someone to go to a day centre and given them a paltry personal budget instead. I never know where I stand.
ANYWAY...
The family, understandably, are not happy about it. I think it's wrong not to give them at least *some* of the money he's eligible for, particularly given that he is not going to attend the day centre and did not ask to.
I've told them how to make a complaint, but beyond that I'm not sure what to do. I've called a carers association to see if they could advise them and advocate, but when i explained the case they seemed to be siding with the council! I had the impression they didn't like personalisation anyway.
Should I advise the family to go to the local MP?
Their first language isn't English, and the only one fluent is the service user's brother who is only 19 and at college. He has said to me he feels a bit out of his depth and pushed for time.
Has anyone had any similar cases? Any ideas?
Have you completed a Continuing Health Care checklist to determine if your client will trigger for a decision support tool? it is another avenue where you client may meet the criteria for joint health funding or be fully health funded.
Also on the grounds that your client is not an english speaker perhaps the day centre may not meet their cultural as well as religious needs so that should be ur arguement. Update your assessment and justify your reasons. btw by definition, a personal buget is ordinarily granted based on the FAC's eligible needs and its is up to the indiviual whether they want to buy into the council's services or not.
Find out what advocacy services can support the family. Give them differnt routes to take. I think you can challenege ur boss's understanding of self directed support and personal budgets, document all ur evidence as well ..
Well ... I'd be wondering how someone lacks the capacity in any area? I'd be spending more time with him (for example what are his interests?) - look at his history and get to know him and his family. I'm sure he can make basic choices or his preferences known (one way or another) in some areas of his life? Surely this persons life experiences can extend beyond what his family can provide? I'd be worried about him becoming the family cash cow (exactly what were they going to spend the money on?)! Not sure where you live but I work in a densly muslim populated area, and they seem to welcome respite. I'd be doing further work with this family with an interprettor to find out what their anxieties are. I don't agree with the reasons why your Panel say he should go to day care but if the service user has never been given the experience or opportunity to go then how will we ever know if he will benefit from it as opposed to spending time with his family?
I'm surprised your local carers centre and advocacy didn't want to take this on. The MP will write to the council on behalf of your service user demanding an explanation and it may get them somewhere, but I'd question any carer who didn't want some form of outside help when there is a potential financial gain and the service user's own choices don't seem to have been explored,
Thanks for those tips...that's helpful :)
The family's anxieties are around those looking after him. They have had bad experiences in the past, and they say that in the time it takes for others to understand his ways, he'll become distressed. I understand their feelings about that.
About mental capacity - I know exactly what you mean, but the reality is I don't have all that much time to spend with him, and when I do, his family are always going to be there. Asking some families to leave can be a very delicate business, and if he doesn't even speak then I can't come away after an hour or so and presume to know him better than they do. He does not speak or demonstrate any understanding of what I am saying when I do go there, although he is always present. As I said, they visited the day centre with him and came away feeling that it was not right for him. In my area I have found it is common for Muslim families to feel it is their duty to fully provide care.
I also understand what you mean about the family not wanting him to interact with others, but ultimately like anyone else the service user has an experience of life based on all that he has known, and he has the right to be happy with it. Unless I have reason to believe that he wants to be away from his family, I won't challenge it. Nobody marches into my home and tells me that I'm not getting out enough, and all that I'm comfortable with is not enough for me. Moreover, the family *do* want him to get out and be stimulated, which is why they want the personal budget. They just feel that they are the best people to support him, and it would make him happiest.
Finally, about him being the family cash cow - I also understand your concerns on that. The thing is, firstly personal budgets cannot be spent on anything. Receipts have to be provided. Secondly, I do feel some sympathy for some families who come to rely on a certain level of income. You can't forget that they give up their jobs quite often, and their own material well-being and career opportunities are restricted by their caring roles. Therefore, I wouldn't want to demonise them. I think it's best to trust first, and then review it. If money is being mis-spent, then of course it would be reined back.
Surely this is just about family autonomy and officials who assume they know best.
There will, perhaps be poor choices but the principle should not be questioned.
Start at 100% then make evidence based adjustments, if need be,
No - it is exactly about the opposite. It is about professionals seeking to ensure quality of life and new / stimulating experiences for a Service User against the wishes of the employer to save money by restricting choice and the family, for right or wrong reasons, not seemingly able to put their family member's interests above their own.
Hi Manwiththeladder, I understand better where you are coming from, I still think it is completely wrong of your panel to make such a decision, they clearly are not conducive to the core values of personalisation, I do however feel that your service user is not being allowed to make informed choices, as you say, he only has experience based on what he has known, there are so many opportunities out there for him, could you not do some negotiation between the family and the panel - say 1 or 2 days at the block contract day centre and the rest to be spent as per support plan? I mean if family care broke down for what ever reason, it could make meeting his needs more difficult in the future, to have at least one external link who he is familiar with can make a big difference in those situations.
Sorry ... just to add, we have a lot of culturally sensitive services in my area, perhaps that is why the uptake is higher?
Hi
Lots of experience of similar cases and personalisation in general. The starting point should be the supported self assessment and this should then generate an indicative weekly budget. the family should then be supported by a broker or yourself to come up with a support plan that meets the eligible needs. The personal budget should not be restricted to being used to buy services from the LA whether they have a block contract or not. This is the core of personalisation and the principles of self-determination etc. The council can insist that the support plan demonstrates value for money but should not interfere in what services are purchased unless they are not value for money.
The input of an advocate would be useful to help determine what the SU wants but this can be very difficult in some cases. Is there any reason to suspect that the family do not have his / her best interests in mind ?
Spending of personal budgets is or should be strictly monitored so the money should not be able to be abused and the regularity of reviews depends on the percieved risk of financial abuse or the money being spent unlawfully.
Getting away from traditional day centres is certainly a good case for personalisation if the needs can be met in another more imaginitive way but their does need to be a clear support plan in place to demonstrate how the needs can be met rather than just vague ideas.
Part of the point of personalisation is to take decision making away from professionals and LA's and leave this to SU's or their families who know what will best meet the needs of the individual.
All services users with potential health needs should have a continuing care assessment to ensure that the LA is not illegally funding someone whose primary needs are health but this will certainly not help in the personalisation question as PCT's generally do not offer any sort of personalisation.
We get many imaginitive support plans developed both internally and externally for service users and sometimes it is difficult to work out exactly what needs are being met but that is the job of the professional sometimes to advocate for the service user and get these things agreed by senior managers. Unfortunately the families who have contacts or are very articulate know how to complain effectively and get what they want and those who don't know the system do not get what they want.
The whole process is riddled with inequality and often a letter from an MP or local councillor can make all the difference although it would be wise for you to get the advocate or some other independent organisation to suggest this if possible. I am disappointed to hear that the carers organisation will not take this up and I think they need to explain their reasons. Best practice would certainly suggest the use of an advocate in this scenario.
It is not easy and there are lots of problems with the implementation of personalisation and the attitude of your manager is not one that sits comfortably with me. For your part remain objective, use evidence, don't own the problem yourself, use supervision to discuss the case and don't end up being too emotionally involved. Involve other agencies including advocacy, brokers and carer support (ideally) and is there a part of your local authority who are responsible for implementing personalisation? Try not to harm the relationship with your manager as this won't help you or other SU's that you support although I completely understand your frustration !
Also ask for some clear guidance on the process of personalisation within your LA and what is and what is not acceptable. There must be some guidance somewhere.
Good luck and let us know how you get on.
Regards
Julian.
Hi This reply may be a bit late and it looks like you have been given some good advice already- but this may help.
I would suggest going back to the start and looking again at your assessment. You need to know what this mans needs are, how he wants them to be met, what family and community support is available and what needs are eligible for LA support. A good starting place would be to find out how he communicates- to get anything out of life he needs to communicate somehow and you need to use this method or find someone who can.
Not having time is not acceptable. There is no point visiting at all if you are not going to communicate with the client or fully assess his needs, wants and capacity.
If family are meeting all of this mans needs I would question eligibility. So you need to be clear about what needs the family can not meet and what outcome is being aimed for if a service is to be used to meet that need.
It should then make it clear to panel why a particular service is requested which should allow them to see clearly why going to day care would not meet the need.
Panels usually suggest something unsuitable becuase they have not got the full picture. Complete the assessments fully and you will be able to show them the need, he outcomes and how you plan to get there.
random: eligible needs, and what the family provide, are two entirely different things. it may be that family are meeting all eligible needs but they are still, fundamentally, eligible needs. I work in an area with a large Muslim community and it is true to say they have often have a passion to be, or feel culturally compelled to be, the care provider, particularly in the face of services designed for and primarily used by White Brits. This is also true of the Hindu community in my experience. And I have witnessed some amazing care provision with family members earning some money whilst providing great care, better and more appropriate than stock services. Abuses of power and of situation are always potentially there hence safeguarding policies and guidance.