Direct payments – don’t get fooled by personalisation
by stevebroach
I’m sceptical about personalisation. The principle of disabled people and families having choice and control over care arrangements is unarguably right. However in practice I see personalisation delivering two bad things. Firstly, personalised approaches are used to transfer risk and responsibility for care from the state to disabled people and their carers. See the brilliantly titled paper by Prof Luke Clements, ‘Individual Budgets and irrational exuberance’. As Mark Neary put it yesterday in his alternative social care dictionary; ‘Personalisation – Phew, got rid of another annoying statutory duty.’ By way of example, people who use direct payments to employ their own Personal Assistants must make arrangements for tax, National Insurance contributions and statutory sick and maternity pay – as they become employers. Is that something most people would want to take on?
Secondly, personalisation is used as a cover for cuts. It seems to be far easier for local authorities to tell people their personal budget is being reduced by 20% than to tell them that the service they were receiving on five days a week is now only to be provided on four. It’s even easier to change the way your Resource Allocation System generates an ‘indicative’ budget (more on RASes below) to reduce this figure in a way that disabled people and families will struggle to understand. None of this is lawful if the service / funding is being provided in discharge of the CSDPA duty, because the CSPDA requires eligible needs to be met in full – but that doesn’t stop it happening across the country.
Saying all this though, I recognise that for some disabled people and families with disabled children the right to a direct payment has led to a massive improvement in their lives. Despite all the rhetoric of personal budgets, to my mind it is direct payments which still matter – they are the mechanism by which money actually moves from the state to disabled people and families. In the best areas, direct payments have killed the culture of the one-size-fits-all service which previously existed and led to real innovation in the services available to disabled children and adults. In the best areas.
Personalisation is often seen as a law-free zone. In Control once published a paper with the (in my view) shocking title ‘Don’t be fooled by the law‘. However unsurprisingly the allocation of state resources to individuals through direct payments is in fact covered by a significant amount of law and guidance. I’ve already written about the new SEN direct payments under the Children and Families Act 2014. The problem with these is that, in short, the local authority is not allowed to make an SEN direct payment if to do so would lead to additional costs. In health, there is a new right to a personal health budget from 1 October 2014 for children and adults who are eligible for NHS continuing healthcare – but as far as I can tell it is up to the NHS in every case whether to make a direct payment. See para 7.2 of this guidance on the right to have a personal health budget which suggests health direct payments can be refused if they are ‘impracticable or inappropriate’. The detailed guidance on health direct payments confirms that health direct payments can be made when they are appropriate for the individual and represent value for money – but this does not mean that in any case they must be made.
So the right to a direct payment is most real in social care – and works in essentially the same way for disabled children and disabled adults. Links to the law follow – with the usual health warning that some may not have been updated with relevant amendments. The links should at least give the basic statutory scheme.
The key statutory provision (until next April at least when the Care Act 2014 comes into force for disabled adults) is section 57 of the Health and Social Care Act 2001, which requires that direct payments must meet the ‘reasonable cost of securing’ the necessary service. The duty to make direct payments when services are being provided to disabled children stems from section 17A of the Children Act 1989. Adults who lack capacity in relation to relevant decisions about direct payments now have a right to them under section 146 of the Health and Social Care Act 2008.
Under the Community Care, Services for Carers and Children’s Services (Direct Payments) (England) Regulations 2009, social care direct payments essentially must be offered in any case where the disabled person or family is capable of managing them, either alone or with available help. The way in which social care direct payments should operate is governed by statutory guidance with the snappy title Guidance on direct payments for community care, services for carers and children’s services: England 2009.
From this statutory scheme we can construct some answers to questions that might arise where local authorities neglect the fact that the right to direct payments is carefully defined in law. Here are some of the questions that I have been hearing recently about direct payments, and my general answers – although of course, any individual case needs careful fact-specific advice:
- Do I have to accept a direct payment? No. Direct payments are a right in social care (absent exceptional circumstances) but they are also a choice. If the disabled person or family don’t want to deal with a direct payment, they are entitled to say that they would prefer a service to be provided to meet the eligible needs. Of course, they will then need to negotiate with the local authority as to what service is to be offered – and providing it meets the need, the local authority is not obliged to fund a more expensive service when a cheaper one is available. However no disabled person or family should ever be forced to accept a direct payment. See the guidance at para 15; ‘A person does not have to accept direct payments; if they wish, they can choose instead to receive services that are provided or arranged by the
council.’ The guidance emphasises the need for support services and advocacy so that the choice as to whether to have a direct payment is a fair one in every case. - How should the amount of direct payment be set? Direct payments should be set in each case at the amount that the local authority considers will meet the reasonable cost of securing the necessary services for that person. That assessment by the local authority has to be informed by the evidence, including the assessment and the service plan, setting out what services the authority considers would be sufficient to meet the eligible needs. In order to comply with the statutory duty the local authority has to assess the disabled person’s needs, determine which are eligible for support, decide which services would be sufficient to meet those needs and then work out what that package of services would cost. That is the sum of money which should be offered as a direct payment – although of course what the disabled person or family choose to buy with that money is (within reason) up to them (see below). See the guidance at para 111 onwards for more detail about how the amount of direct payments should be set. Importantly the guidance emphasises at para 114 that ‘councils should include associated costs that are necessarily incurred in securing provision, without which the service could not be provided or could not lawfully be provided’ – for example recruitment costs, National Insurance or VAT. If you’re going to take on the state’s employment responsibilities it’s reassuring to know the state is obliged to fund them.
- Can a local authority have a fixed direct payment rate with no exceptions? No. Local authorities can’t ever operate blanket policies (unless the policy just reflects a legal rule) – they must always at least consider exceptional cases. However here we have a clear statutory duty which states that the amount of direct payment must mirror the cost of services to meet the individual disabled person’s needs. So a local authority could not have a fixed hourly rate of (say) 9.50 per hour for a carer – because some disabled people may need a more specialist service with greater cost. In my view it is doubtful whether even a typical rate with more allowed in exceptional cases is lawful, because this may not allow the case-specific focus which the law requires.
- Can a local authority use its RAS to determine the amount of money offered as a direct payment? No. Prior to the Supreme Court’s judgment in KM v Cambridgeshire CC, in my experience local authorities were routinely using their Resource Allocation Scheme (RAS) to determine the amount to be paid by way of a direct payment in any particular case. A RAS, put shortly, is a mechanism by which needs can be translated into sums of money using the rough cost of meeting similar needs in the area. What this skips out is the essential step of working how much it would cost to provide services to meet the particular needs of the individual disabled person. This is why the Supreme Court in KM made clear that RASes can only be used to create a ‘starting point’ or ‘ballpark figure’ – more formally, an ‘indicative allocation’ at the start of the process. So the RAS could generate a sum of say 120.00 – but the essential next step is to develop a support plan to see how much it will actually cost to meet the disabled person’s needs and then (inevitably) increase the sum allocated to comply with the legal duty. See a detailed critique of the use of RASes by Prof Luke Clements and Lucy Series for more reasons why their use is problematic – but confined to the role prescribed by the Supreme Court in KM their use is lawful.
- Can a local authority refuse to allow direct payments to be spent on anything other than personal assistants? No. The whole point of direct payments is to allow flexibility in the way in which care is provided and arranged. As the statutory guidance says ‘a direct payment gives the service user flexibility to look beyond ‘off-the-peg’ service solutions at options that may include employment, education and leisure activities as well as personal assistance to meet their assessed needs.’ It is totally unacceptable in 2014, when direct payments have been around since 1996, that local authorities still seem to be asserting unlawful limits on direct payment expenditure. See also para 14 of the guidance; ‘Direct payments do not have to be used in the same way as if support was being provided directly by the council. Indeed, they are intended to give the individual the maximum degree of choice and control over how their eligible
needs are met.’ Finally see para 90; ‘In discussions with individuals about how their needs might be met through
direct payments, councils should be prepared to be open to new ideas and be as flexible as possible’ and para 92, ‘Conditions [on the use of direct payments] should be proportionate and no more extensive, in terms or number, than is reasonably necessary.’ So why are these rigid rules about what direct payments can be spent on still in place? - Does a direct payment have to be enough to cover things like transport and activity costs? Generally, yes. To repeat – the amount of direct payment should meet the reasonable cost of securing the necessary service to meet the disabled person’s needs. So if the service is intended to meet a disabled person’s needs in relation to social isolation, the ‘necessary cost’ of securing this service will include the cost of getting there and the cost of securing admission. Both transport and activity costs are covered by the CSDPA duty and so must be met where this is necessary to meet the person’s needs. The guidance helpfully emphasises that ‘Some people might use their direct payments to facilitate better social inclusion, others to aid their general well-being, for example through fitness classes or arts and cultural activities.’ The only situation where a direct payment need not cover these costs is if the local authority can reasonably conclude that it is not necessary for it to provide these services because they can be met another way. However that would need to be a rational decision based on the evidence in a particular case. For example, a blanket policy that transport costs will not be met via a direct payment because they can be paid for through state benefits will be unlawful.
- Can the local authority refuse to allow direct payments to be spent on a particular service on grounds of risk? Yes – but only if there has been careful assessment in the individual case. As the guidance emphasises at para 97; ‘Support planning involves allowing people to make their own informed decisions – including decisions about risk. Councils have a responsibility to ensure that, wherever possible, the choices made by the individual are respected and supported. The benefits of increased autonomy and social inclusion may have to be weighed against the risks associated with particular choices.’ This reflects the requirement to respect disabled people’s rights to private life, dignity and autonomy under Article 8 ECHR.
- Does there still need to be a care plan when support is being provided via a direct payment? Yes. See the guidance at para 98; ‘Councils are reminded that there should always be a care plan, a written copy of which should be given to the individual. This advice applies equally where people direct their own support or where the council directly
provides or arranges services.’ There is an obvious reason why this is so important – if there is not a written plan setting out which services the local authority considers necessary to meet the person’s needs, how can anyone tell whether the amount of the direct payment is sufficient?
I hope this myth-busting exercise is some help. If personalisation is going to have benefits for disabled people and families as a policy approach it needs to be operated in accordance with the law. Disabled people and families must not get fooled by personalisation. Whether eligible needs are met through services or money the law requires that they are met properly and in full.
Please post any comments and general questions about the law on direct payments below and I will address those which are not case specific. For case specific issues I suggest contacting a specialist solicitor. While low level disputes around direct payments should be resolved through the local authority complaints process, serious disputes may require an application for judicial review.
Brilliant summary. Thank you, Will be shared widely with parent-carers in Hackney
LikeLike
Great, thanks Amanda – please do!
LikeLike
For me the principle of direct payments gives the recipient better life chances . The amount received depends entirely on the quality of the assessment and if it is needs led.
This is where Peer Support can play a vital part in supporting family’s during the assessment process. We have found that family’s are overawed at this stage and some have little idea of how to present their case for the needs to be met.
If we can address these points then direct payments will be looked at more favourable.
As a Peer Support group we manage the payroll,tax and NI as well as contracts of employment, and even pay the PAs on the end users behalf.
My own son is living a more fulfilling life via direct payments rather than the day wasting centre he used to attend.
Les Scaife
West Lancs Peer Support
LikeLike
Very valuable comment, thanks Les. Sounds like we need similar services in every area.
LikeLike
I won’t go into personal details but I have 2 sisters who live in their own flat one has a lot of support needs, we have been consistently told by LA that if her direct payment goes over the amount of the cost of an average care home, she would have to move into a care home. We have been filling the gaps as a family because obviously she wants to stay in her flat. Is an LA allowed to make this ‘cost effectiveness’ decision?
LikeLike
Very important question Georgina. The law here isn’t clear and needs to be clarified. I would suggest you speak to a specialist solicitor ASAP. We are going to try and clear the law up so that everyone knows this isn’t allowed with #LBBill – see http://www.lbbill.wordpress.com
LikeLike
Would an ‘average’ care home meet your sister’s needs, though?
If I’ve understood Steve correctly (and if I haven’t, I’m sure that’s my fault, not his), the comparison should rather be costs of meeting your sister’s needs at home vs. costs of meeting her needs in a suitable residential care facility; not vs. average residential care costs?
LikeLike
The LA would be trying to argue that it is discharging it’s duty towards your sister by offering to meet her “assessed needs” (ie. the offer of a residential placement) in a way that is cost-effective for the LA – as they are allowed to be mindful of available resources. However, I think it could reasonably argued that the financial difference between maintaining her in her own home in line with her choices (assuming she had capacity to make that choice – otherwise you’re into Mental Capacity Act territory also!) and moving her to a slightly cheaper resi placement is not sufficient to make that a proportionate and reasonable decision. In reality they’re basically just refusing to pay for more care and using the resi cost as a benchmark, which isn’t a realistic benchmark since I imagine there’s no way she’d actually move to the care home. They’re therefore refusing to meet what you feel is a genuine need, and if you follow the complaints process through and get your local MP or councillor on board I suspect they will back down.
LikeLike
The Care Act kills the whole RAS fiasco stone dead. But try telling the Dept of Health that, who still talk of ‘indicative allocations’ in the draft Guidance and who willfully misinterpret the Act’s use of the phrase ‘Personal Budget’. In the Act that is simply the name for the amount of money that will accrue to an individual’s ‘Care Account’ counting towards their care cap, but for the DH it is still this fantasy of a fixed sum of money that must be budgeted well and don’t come running to us if you run out half way through the year.
Cash for care will not go quietly, and Local Authorities will still wish to use ‘personalisation’ primarily as a means to make savings. It’s up to people who need social care and support to be sufficiently legally literate that they can hold LAs to account for their actions. Never take their word for it!
LikeLike
Thanks Peter. Afraid I don’t share your confidence that the Care Act will be the death of the RAS – but I look forward to debating further once we have the regulations and guidance, which I understand are imminent!
LikeLike
A few years ago I came across In Control at a conference they hosted in Liverpool. And was staggered by their self description as a charity founded much like ours (conversation with employee on stand) Although registered as such, and evolving I think from a small parent led group I discovered that they functioned as a defacto bit of govt.(DH) I did wonder how a bit of spun off DH function could be advising people in this way. Especially as I am part of a genuine grassroots family run voluntary group, with precious little agency (or ‘clout’ as we Northerners would say)
LikeLike
Direct Payments & personal budgets exist. Once something exists it can be used appropriately or not. To date they cannot be used to fund res care or traditional models of support. Some of us value and attempt to co-produce particular models of res care. My experience is that LAs, understandably strapped for cash, and influenced by certain bodies, are pushing such to follow personalisation agendas. The result is often that people end up with a ‘personal slice’ but much less than they formerly had. e.g. paying for 2 days at a (good) activity centre they formerly attended all week. Giving everyone the ‘same’ isn’t fair or appropriate.
LikeLike
This is precisely my point Mary – that cuts are being introduced under cover of personalisation. Everyone needs to work together to shine a spotlight on this and stop it.
LikeLiked by 1 person
Very interesting and thought provoking. Do feel we can have no trust anywhere when DOH even, deceives. I have extrapolated and simplified (without detracting or changing I hope) and I shall circulate to all the very busy mums I know.. Thank you for this help.
LikeLike
Thanks Tricia – you’re very welcome to circulate. To be fair to the Department it is their guidance that I am quoting from extensively above!
LikeLike
Hi Steve, worried about people seeing personalisation only as personal budgets when it is so much more. Personalisation is a holistic way of working that places the individual at the heart of all decision making, personal budgets are just a way of delivering personalisation if done properly! I really share your concerns about personal budgets and how they are abused by statutory organisations, but we need to keep working to get them implemented properly. They themselves are not a bad idea it is the way they are abused by local authorities in particular, where they have in many cases become a mechanism for continuing to deliver a system centred approach. We need to support families and individuals to plan in a person centred way and to have the appropriately high expectations of the organisations that are meant to support them.
Great myth buster on direct payments, thank you.
LikeLike
This is a very important point Sarah and thanks for making it. However my concern is that the ‘philosophy’ of personalisation (which is almost impossible to argue with – who wants non-personalised services?) is being subverted to deliver cuts and transfer risk to disabled people / families. So my concern is not just with personal budgets / direct payments, but with the misuse of personalisation as a concept / approach. The abuse of the direct payments scheme is in my view a symptom of this wider problem.
This is to take nothing away from the fantastic work that has gone on to make personalisation meaningful and real by some disabled people and their allies. However this work seems to me in danger of being swamped by the approach I outline in this post which now seems to be the norm.
Fortunately best practice in relation to personalisation is actually entirely in line with what the law requires. If we shout this from every rooftop perhaps we can bring practice and the law into line.
LikeLike
Very useful. Thank you Steve. I would be interested on your comments on the Transport Policy here in Sheffield. In our case we have a motability car and have been told that it has to be at our son’s disposal for all his “activities” (which means all the time as much of his time is spent moving around as opposed to travelling to and from a specific activity where he would stay for some time). The Council refuses to pay mileage for him to travel in a PA’s car. (They also don’t pay mileage for the use of the motability car for the activities in his support plan). The transport policy makes it clear that if a PA is not available to drive him in the motability car then the family should. This means that my husband, who is the only driver is responsible for driving my son for all – bar 12 hours of the week when we employ a PA who can drive. We have challenged the policy vis a vis our situation on the basis that one of the needs assessed in the RQ as critical – the impact of our son on others – cannot be met if we do not sometimes have use of the car at a time when a PA is with our son. (This would allow us to have some respite away from the family home/to do chores associated with maintaining our family home/supporting one of our other sons who has very significant health needs). If we did not have a motability car the Council require us to use the motability aspect of the DLA to pay for transport used for activities in the support plan. From your comments it seems that Sheffield’s transport policy could be challenged?
LikeLiked by 1 person
Very helpful. Could you just advise me where to go to for advice. I have been asked by a family member who has been threatened that her DP is being made in the basis that if it is any more then her 20 year old son to go into a home. Can her son get legal aid or her yo challenge thus. He is deaf and blind aged 20′ multiple disabilities. She is a single parent and fantastic at looking after him. She has just got a job so has care all the time at work but no help other times. She works helping other very dusabled children in a special needs school. Where can we go for help. Thanks
LikeLike
Great post thank you and highlights everything I have ever understood about DP, point 6 in paticular, I wouldn’t say ours accounts for these cost but by been creative we manage to cover them for a free activity other than transport, I was challenged by the social worker why my son goes to this activity because it works out at 3 hours and he only has 5 a week and does others else where, this cost 8 pound a week that’s all and I was told it should be payed from dla which of course I refused, this club is the only thing my son does after school he can’t play out and this is his way of socialising like his assessment says, so I told them to read DP guidence and said state benefits is not for that purpose, I was still shocked they were arguing over £8 you can’t get 1-1 care for that I was actually saving them money,
LikeLike
I would be very interested to know what the law says about the assessment process especially where Continuing Health Care is involved as well as Social Services. We are 8 months into re-assessment, (my son already has a budget and direct payments). We have had numerous assessments/forms/rewriting of documents etc throughout that period and have only just began to look at the Support Plan itself (for which we have been told more assessments will be required). The level of intrusion and work generated for us is intolerable. What does the law have to say about the assessment process?
LikeLike
My council appears to have a blanket ban on paying for activities & transport costs for children using direct payments. They say that parents pay for non disabled children to access activities ( true I guess) so disabled children are no different. I think they may allow payments for adults.
So this post is very helpful – thank you.
LikeLike
That’s terrible! I tend to think Suffolk are awful because that’s all I know, but to be fair they are really flexible about what you can spend the DP on as long as they meet the assessed need. We’ve been allowed to use our son’s for things like membership of the local pool, disabled skiing lessons, days out etc. Also yes all parents have to pay for their children but as a parent of a child with additional needs you’re more likely to be short of money, the activities can be more expensive and children more likely to be socially excluded. That was the whole idea of direct payments in the first place, I would have thought that can be challenged.
LikeLike
Well if I’ve read the blog post above correctly the blanket ban is unlawful anyway so I would expect them to change their rules now it’s been pointed out. TBH it hasn’t really affected me to date although I know it has affected others (& I am in the process of sharing this blog widely!) but it may well affect him soon. So very helpful indeed to go into discussing his support package with this information!
LikeLike
Thank you for this blog, Steve. Very informative.
We’ve just gone through our LA’s Core Assessment for social care for a disabled child and found out today ‘the threshold has been met so you’ll be getting direct payments’. No mention of choice about whether we accept this funding route or what the amount would be! We have key questions to get answered when the soon to be assigned ‘case worker’ finally makes contact – all thanks to your blog. Hopefully the LA’s answers will mean it’ll all go swimmingly but, given past experiences, we doubt it.
LikeLike
Really glad blog is helpful. Far too many LAs seem to have forgotten that direct payments are a choice not a requirement.
LikeLike
Hi Steve… we finally heard “funding for x hours for PA was agreed and it is £xx. You will need to set up a separate bank account for all direct payment transactions”. As feared, no mention of DPs being a choice, no care plan supplied to us and no discussion around the hourly rate allocated/agreed.
Wondering how to proceed when we finally meet the ‘Care Manager’ after waiting since July for this process to be completed (as far as the LA is concerned).
What steps would you recommend we take? Should we be seeking legal advice?
Many thanks.
LikeLike
Just had a Carers assessment along with my 22 yr old daughter who has Down’s syndrome and been reassessed because of change in need for both of us . I also care for my mother so am classed as having a dual caring role. Can somebody please tell me the process for assessment how long should assessment take to complete , if am not happy with what has been written can I change things and is there a Limit on how many times I can change till am happy. Should the carer receive a completed document of both assessment before seeing brokerage . I am at a loss . Please help .
LikeLike
I can only answer for my family but due to a saturated job market our direct payment are left unused with my disabled daughter getting no real support. Without a PA she is trapped in home 24 7 … and social care …. weaving heard from her social worker in sooo long. It’s a farse … and it’s the individuals that are suffering and mainly in silence
LikeLike
I queried this with my local authority and received a reply which included this comment: “However, it is important to note that there will not be any additional funds available to pay for entrance fees or transport and you may find that you have fewer hours support each week as a result of using your funds to pay for activity and transport costs.” This seems to my non-legal brain to take no account of point (6) above.
LikeLike
Doesn’t it just…suggest you take some advice for you and other affected people / families
LikeLiked by 1 person
Thank you – it seems as if we might have to!
LikeLike
Thank you. This is so helpful. I tweeted you under the name @wheeliekidz & you sent me the link. I’m hoping I can now show that not only is my daughter (aged 11) entitled to help to become more independent with her personal care (can’t do any without help as has CP), but also that she should be assessed for help with developing her independence in general (not having to ask mum for everything) as per her school ethos.
In our area we have been told that any direct payments or indeed any social care payments can only be used for personal care. This applies to my daughter in child services & my son in adult services.
LikeLike
Thanks – really glad it helped. Suggest you ask your LA for the legal basis of their policy restricting DPs to personal care, and at the same time speak to a solicitor from my list. Best of luck.
LikeLike
North Yorks is looking to cut the £5M SEND transport budget by £750k – that is the budget that provides transport to and from school. It is considering cuts through:
introduction of direct payments
independent travel training,
cutting discretionary transport (charging for post-16 provision transport)
changes to commissioning and contracting
It is looking to pilot direct payments for SEN transport “with a view to scaling this approach up” (noting: “Initial modelling to apply Kent County Council’s banded direct payments approach to 11 cases in North Yorkshire where taxis to-and-from school were provided to children with an EHCP and DCS Social Care Direct Payment suggested that 75% of costs could be saved if families chose a direct payment”)
and it will also
“Consider the impact of special school review and review of individual packages”
It is intending to consult at some point in the future about the changes.
Can you tell me which bits of the law will apply here eg do parents have to accept a direct payment for SEN transport? If parents do wish to consider a DP, what do they need to be aware of? What does the council have to consider when it considers cutting post-16 transport? Do you have any other advice?
Thank you in advance
John
LikeLike
Hi can direct payments be delivered completely inflexible like for example at specified hours of the day every day with a client not allowed any changes to the times even after asking for permission or because of staff availability or apppintments
LikeLike
Sorry Jackie – I can’t advise without proper instructions. In this post I talk about the way in which direct payments must meet eligible needs. The whole point of direct payments is that the person receiving them is supposed to have choice and control over their support. If that isn’t happening in your case you may want to speak to a solicitor: https://www.google.com/amp/s/rightsinreality.wordpress.com/2014/09/13/solicitors-with-expertise-in-disability-and-sen-cases/amp/
LikeLike