Context: Our 23 year old daughter is very physically disabled and has moderate learning disabilities. She is bright, verbal, observant and capable and has her whole life ahead of her.
Despite her disabilities she is still progressing and needs opportunities, just like any non-disabled person.
She has no use of any of her limbs, so can’t really do anything by herself, but is used to directing her care. She has become very independent at residential college and has aspirations.
She is about to take on a tenancy in a supported living household for 4 people, after a lengthy wait. A housing association has bought the property and are adapting the property for her physical disabilities and the needs of the other women she is going to share with.
We are her finance and property Power of Attorney holders, and we will sign her tenancy. She has particular difficulty with understanding money and she knew she will need a great deal of help in this regard, although she does know that one needs to pay for accommodation. We know that the council believes her to lack capacity to understand a tenancy so we think it’s better that we sign the tenancy.
We are all preparing for the finalising of her proposed care plan, with a move in date for November.
We have been told that she cannot expect any one to one support in her new house, even though she has been funded for a good deal of this degree of support for the last 4 years (including in temporary placements since she left college) – at least for her waking hours – and she can’t do anything without help.
For instance, at her first temporary placement since college, she had 12 hours per day 1:1 care, to cover her waking hours.
Her current budget is for approximately 123 hours a week in a temporary flat (17.5 a day, roughly) on her own, made up of personal care and general independence hours, at a cost of £4265, the funding covering about 7 hours a day of 1:1 hours, plus 10 hours of general independence support per day, the care company’s standard weekly fee for core staffing and the night time monitoring fee.
We appreciate that when she is living with others, there will be savings that are logically possible, some of the time.
But she needs 2:1 for hoisting and so does the other co-tenant, so we think it is not feasible to plan for ability to call on the core staff to make up the 2:1 ratio for both people needed for these tasks for the two of the tenants out of the 4, whilst still managing the others’ needs.
We are concerned that if the entire core team are involved in moving and handling one or other of the women on the ground floor, there will be no other support available in the house for however long the other person’s needs take to be met. And the ‘upstairs’ women are ambulatory so will be out and about at least some of the time, either with or without some of the staff – we just don’t know.
We were told by the social worker’s manager that the council do not ever allocate 1:1 care because “the house will get too full of adults”.
I told our daughter all this, yesterday, and she absolutely understood. She knows that she is reliant on staff for everything, to be her hands as well as her legs. She looked shocked, and swore, when I told her the news, and said why do others get chances to have a good life, and she doesn’t?
We’re worried that she would quickly withdraw and become accustomed to losing control and independence. This happened before when the staff in her first temporary placement (honestly) just sat there and did nothing. She very quickly became disinclined to leave her room or do anything.
Our council has also told us that she can never leave the house overnight for pleasure, or at least that no support will be provided to do so.
They will not provide the support she would need to go on holiday, or visit friends who live further afield. This includes her boyfriend, her sibling, and her college friends, who all live further than a day trip away.
In her care assessment at age 18, she was given funded support for a week’s holiday every year. The Council are saying that this was only to give us respite but it was because she wanted to do her own thing. We made a complaint to the council about the holiday, and they upheld their decision.
None of us has been told anything about social care charges or Disability Related Expenditure.
This is not ordinary daily living to our minds, let alone a ‘gloriously ordinary life’. We think it’s equivalent to deprivation of liberty and that she is going to be forced to accept it. If she wanted to leave the property, the care provider would prevent her, in her best interests, but Community DOL authorisation from the Court of Protection has not been discussed by the council.
She has had 3 updates or reviews since her first proper assessment, which was done when she was 18. The documents do not say ‘Care Act’ on them; they are called “FACE overview assessments”. Those assessments did not make any significant changes regarding her identified needs or domains of eligibility.
She’s got 4 versions of a care plan, the earliest from when she turned 18, and the most recent from May 2023 – that last one was not dated, however.
We have paperwork about her current budget, above, but not what was received whilst in any earlier shared placement, even though they have all been very different as to costs and input, on account of the setting being shared or singly occupied.
We have been told they will be reviewing all this in September. We’ve only just found out she’s entitled to a Care Act advocate.
Answer: This is a request for advice rather than a question, but we are answering it as a blog because in our experience it typifies (unfortunately) very common behaviour of providers, care planners and management, when signposting young people with learning and physical disabilities, to move into supported living.
It’s all on account of unawareness of the legal framework, as far as we are concerned.
This means that parents or other close relatives supporting people with learning disabilities, to make such moves, simply MUST get themselves educated in adult services law and legal principles, whatever it takes, in order to be astute about what is illegally wrong with the approach set out above, before the crunch comes.
We mention some solutions for this challenge, at the bottom, but in the meantime, show this to the council, is all we can say, and say that unless acknowledgement that what you’ve been told, CANNOT ultimately be what happens, you will turn it into a letter to the council’s Monitoring Officer, with a link to this site page.
We will divide up the issues:
It sounds to us as if she would be regarded as holding on to the presumption of capacity with regard to where she lives and to physically interventionist matters related to her care and support – but in reality, that she will not understand or be able to absorb advice about her legal rights, and that she would experience substantial difficulty in engaging assertively with the forthcoming review. That means skilled advocacy by a legally literate advocate will be essential.
As long as you do not, as her parents, put yourselves up as willing to support her participation, informally, eg citing the issue that you do not yet know any more about her rights than she does, she will then be legally entitled to an independent funded Care Act advocate, without which the review and revision exercise, which her imminent move requires, because it is an obviously fundamental change of circumstances, would be unlawful.
The council’s duty is to procure the appropriate advocacy, and the advocate is supposed to know about your daughter’s Care Act rights.
It is not OK to let an advocacy company decide whether it is ‘needed’ without entering into a formal delegation of that function on the part of the council. It is not ok for the social worker to say to themselves ‘No need, her Mum can be the advocate’. See the LGSCO report into Devon’s failings in a transition scenario, on this site.
It is important to grasp that supported housing is not generally provided through social services, however helpful they have been, in setting it up; a key indicator is whether they are expecting the person to pay rent directly to the landlord, for the right to live there.
You’ve not said whether the council is funding the accommodation directly, but it is not likely. By taking on a tenancy, she will be providing her OWN accommodation, and be receiving non-residential services.
You should not let anyone call this a placement; it’s her own accommodation arrangement, based on a contract for the tenancy. The housing arrangement and the care arrangement must be completely separate and not inter-dependent in a legal or factual sense, to avoid the need to register this accommodation as a care home, which would bring about the collapse of the whole model.
Many care providers are promising to pay the landlord fees for voids in rentals or housing benefit shortfalls, which we think breaches this rule, although CQC will not engage with that issue, it being, no doubt, too difficult for what it would mean for the sector as a whole. Those sums or promised sums used to be taken on by councils themselves or ICBs, under grant-making powers. It is our view that they should still be making those grants or otherwise making ‘accommodation plus’ direct accommodation agreements with housing providers, for people who could not be meaningfully provided for, without specialist and stable accommodation as an implicit part of their care plans, and not merely as the context for receiving non residential services, but that is not relevant to your daughter’s situation, as far as we know, and has become more complicated by dint of a 2024 case called Campbell.
She probably had enough capacity to grant you the power of attorney if she knew that she would need help with financial and property issues; it sounds as if she did, and it becomes effective as soon as registered, and before she loses capacity in this regard, unlike a welfare power of attorney, which you do not mention having; one of those depends on supervening incapacity before the welfare authority is triggered.
It’s perfectly proper to give her your support in this way but NOT UNTIL YOU ARE SATISFIED THAT TAKING THIS TENANCY IS IN HER BEST INTERESTS.
To the extent that that depends on the care package being offered by the commissioned provider, you must all be careful and by the time the care plan is finalised, clear on her legal rights and the content of the package.
This stance on the reasoning for no 1:1 care is irrational and unlawful, in our view, on account of being positively choke-worthy, which is a good test for whether something is judicially reviewable, as beyond the margin of discretion give to councils; let alone taking account of the case law about the need for articulate evidence based reasoning before revising anyone’s care plan, downwards (established since the late 1990s!) and on account of the principle of appropriate, adequate responses to assessed eligible needs being the minimum for lawful discharge of care planning functions – in line with a person’s human rights and the need to promote the person’s wellbeing.
For any change to a care plan to be lawful, the professional staff need to be able to articulate where the needs that previously compelled 1:1 support have disappeared to. For example, has the person been cured? Has the person acquired a friend or spouse who does everything that is being planned to be culled? We think not!
It is possible to argue that the previous package of 12 hours a day in a shared setting (or 123 per week, in a sole setting, which is 17.5) was over-generous, for whatever reason, but in your daughter’s case, given that she has no use of her limbs, it is not surprising that her waking hours have been regarded as compelling a mixture of 1:1 care and general independence support – and we doubt that she has suddenly improved. There may be room for professional variation of judgement as to how many per day she “needs” for a decent quality of life in a civilised society, about which a range of ‘mean’ decisions might not be so eyebrow-raising, and which might count as defensible, but planning NONE for a person who is completely dependent on staff would make any judge choke, in our view.
During the time she has been living alone, the only cost-effective way of meeting her needs was to provide the 12 hours a day, or now, the 123 hours of direct care per week, it must be presumed.
The missing link in the assessor’s logic, if the hints you’ve been given, were to persist and be followed through on, is failure to address the question of what will it take to meet her needs adequately and appropriately and lawfully sufficiently, in accommodation that is going to be shared?
It is not the duty of the State to pay for care to cover every eventuality, however unexpected, nor to pay for staff to facilitate whatever aspirations occur to your daughter or meet her wants and desires all day and every day. The law operates to the effect that all they have to do is offer a defensible approach to adequate, appropriate care, promoting her wellbeing, and so as to reduce the impact of her deficits to something less than significant, in a professionally competent thought process, but one which is needs-led and person-centred.
We do not think that the approach being described would pass muster if it went to the Administrative Court – not without much more being done to offer a clearer picture of how everyone’s needs will be met by a guaranteed number of staff, in this shared setting.
The episode of prior care when she was receiving 12 hours a day, even when she was sharing, is the obvious benchmark for a seriously probing discussion by the Care Act advocate and yourselves with the staff about her legal rights, so that you can address their evidence basis for suggesting that the needs can now be provided without the 1:1 support – and then they can address your evidence, as indeed they must.
The fact that someone who is a social worker’s manager has commented as to the council’s position, in the terms above, regarding the house being “too full”, is all you should need to get a legal aid law firm interested in providing legally aided help to challenge the care plan. That is, if the above stance is followed through on, without more ultimately being done to secure a clearer picture of how needs will be met.
If there were many legal aid law firms out there, offering Legal Help, they would write in advance and point this out, but you may not be able to find one, once a care plan is signed off, even if your daughter has less than £8K in savings, to take the council on, in good time, BEFORE her move in date. Legal Help can be used before a decision has been made on the care plan, but there is a nationwide shortage, because law firms cannot make Legal Help pay a viable income.
That is why CASCAIDr CIC is taking on the role of answering questions for free in this format. You can write to the council’s Monitoring Officer (MO) instead, and hope that the MO knows that he or she, too, owes a mandatory and independent non-delegable governance duty to pull the ASC department up about its contraventions of enactments or rules of law (s5, Local Government and Housing Act 1989). If that gets you nowhere, you could wait for the council to ignore your concerns, and then find a law firm to provide you with full legal aid if your daughter has less than £3k to her name – which I expect she does. But they will have to write a pre-action protocol letter and give the council at least 2 weeks to respond, and we know that the pressure will be on you, then, to sign her in to that tenancy and get her new life started.
You haven’t said what the staffing ratio is in this house for 4 tenants – I expect you’ve not been told that detail as yet. Everything may ultimately turs on that detail, on top of the lack of justification for cutting out all of your daughter’s previously established needs for 1:1 care. If it were to be only 2 staff on duty at all times, for the most needy 2 out of the 4 women, then we agree that the fact that both these women may need assistance at the same time means that nobody in their right mind would agree to combining their care plans.
But we think it is bound to be more than 2 staff in the house, taking account of the existence of people who NEED supported living assistance, upstairs, even if they are ambulatory. We appreciate that the very fact of the ‘upstairs’ tenants’ lesser needs, means they may be getting out and about more, but we don’t know if that is with the assistance of staff, or whether that would be outside staff or none at all, leaving staff on hand IN the house?
We anticipate that you might be told that the other people’s care plans are confidential.
There is a special legal reason for that being rubbish in a case of sharing a house.
The legal point is this: everyone’s agreement is necessary under s25(11) of the Care Act before care plans and the budgets required to be stated on those plans, within them, are combined, because a person’s ordinary Care Act right is to a budget that is personal to them – the cost of meeting THEIR needs, and not someone else’s, albeit in the same setting and at the same time.
Calling upon one person’s care hours to support the tasks needed for another person means combining the care plan. The cost of a support worker might be halved, by agreement with a provider, but there is no such thing as a half of a support worker that could do any effective good for anyone, in terms of meeting their needs.
The section mentioned above permits combination of your daughter’s and the other tenants’ care plans (- and therefore their budgets, because one’s finalised budget needs to be IN one’s care plans) – and incidentally that means that all of their assessed charges NEED to have been worked out, based on means assessment, to support their each making an informed decision) – only with each of their consents.
There is no best interests substitute decision-making that anyone can offer up in place of the individual, allowed for in s25; and you don’t have welfare powers of attorney to consent to the giving up of your daughter’s statutory right to a personal budget, in her own name, as far as I know, even if you actually believed it was a good idea, which you clearly don’t.
All the other women, and their relatives and supporters need to be got together and cards laid on the table. What risks will any of them consent to, with regard to waiting for acknowledged needs to be met, due to staffing ratios?
With regard to the holiday and activities issue, councils are not allowed to say ‘No, not ever’, to holidays, as a blanket rule, since the Suffolk case.
You haven’t specified whether it’s the cost of the holiday, itself, or the cost of the support needed for it, that is being refused, but the legal position these days is that if holiday costs are not IN the budget as being part and parcel of meeting the needs, (which is only exceptionally essential to keep a care plan sustainable – for instance, when it’s to enable respite for an unpaid carer, or even for the unpaid carer, themselves, to go too, if they are an essential part of meeting needs) then the expenditure on the support needed for someone to take a holiday which is itself self-funded from their own income, should be considered to be Disability Related Expenditure, and thus reduce the charges that will be levied against the person’s disability benefits, by social services.
Activities are a bit different: councils have largely taken up the position that they are a matter of choice, and as a choice, that they should be self-funded, and that the support for accessing the activity may be limited to a certain number of hours or instances a week. That is not necessarily indefensible, in terms of public law, but the person’s wishes, wellbeing and human rights, particularly respect for familial relations should be addressed head-on. And if the activity is specialist, then the activity cost itself may need to be paid for: the general principle is the more disabled one is, the more central leisure and recreation become, to the means of development within society and the community.
With regard to daily living and trips away from the house, how are they going to stop her leaving the house, without lawful authority, we wonder? She will be a tenant, living in her own home! She can order a taxi.
She either has capacity to reject this package as not conceivably appropriate for her needs, and bring judicial review proceedings with the help of a litigation friend and on legal aid if she has less than £3K, or she does not, not the least because she probably lacks litigation capacity as well as a full understanding of her situation due to her learning disabilities.
If she does not have litigation capacity, then she can still challenge the care plan in the Administrative Court with a litigation friend, but on top of that, she has a remedy in the Court of Protection.
A care and support regime amounting to continuous supervision and control and thus to deprivation of liberty, in the community, cannot be authorised under the paperwork-based DOL Safeguards – they do not cover supported living settings. So the council will need to get the matter to the Court of Protection for community DoL authorisation if they believe her to lack capacity to consent.
To do that, they need to come off the fence about your daughter’s capacity regarding her care and support regime. If they say that she is capacitated to refuse but that the care package they are planning is lawful, you will have to support her in a judicial review.
It is only if she lacks capacity that they could even consider restricting her freedom of movement through omitting to provide more care and support than discussed. You could challenge the package as not feasibly in her best interests, using article 3 and 8 Human Rights arguments, even if there were no locks and no actual mention of deprivation of liberty in the finalised care plan.
You will need to get to a Court of Protection solicitor who will get legal aid for a challenge to any such regime, along with legal aid for judicial review about the underlying illegality of the care plan, if showing this analysis to the social worker’s manager or writing to the Monitoring Officer makes no difference to what is ultimately offered.
Regarding the paperwork you mention since she became 18, it sounds to us as if the council in question has a history of ignoring the Care Act rules on due process and paperwork.
We are not even completely sure whether your daughter has transitioned to a Care Act care plan from the Adult Social Care department at this council, but a FACE Overview Assessment is at least consistent with having formally transitioned from her EHCP entitlement which might still have been funded by Children’s Services, until she was (we guess) about 22.
Briefly, the due process rules under the Care Act are as follows.
- A person is entitled to a copy of their assessment of needs, regardless of any eligibility decision about any of them. The assessment is about identifying the deficits and difficulties: the issues, therefore – not what is needed to improve them to an adequate standard, or whose responsibility they might be.
- They are entitled to a written and reasoned decision about whether their difficulties and deficits in achieving daily living activities including social inclusion and recreation and leisure – and the impact arising from that inabilities, either singly or cumulatively amounts to their being eligible for care funding. That goes to support an eligibility decision, which might be narrow or broad – but your daughter’s will inevitably be broad.
- They are entitled to a written care and support plan in light of the assessment, and one which contains an adequate and sufficient personal budget. That budget must be transparent and rationally calculated, so that one can see which of the needs and impact which have been found to trigger eligibility are to be covered by which bits of the budget, and check that that vision and funding are feasibly adequate to cover inputs as specified, or inputs which should have been specified, and not just woolly outcomes.
- On a review of the care plan, whether regular as scheduled, or consequential on a change of circumstances of any sort that is relevant, such as moving house, or changing to a new provider, or triggered by anyone’s reasonable request on behalf of the adult, the council must decide whether the change affects the care plan and if so, revise it. Section 27 applies. That will be happening here, and public law principles regarding rationality, attention to the evidence basis, due process and following the law in the statute and the case law, and compliance with human rights, as well as funded advocacy rights, all apply to revisions to everyone’s care plans.
- Until all this is done, and done properly, ie the care plan is revised, a person is entitled to what they had in their previous care plan. So if she got no revised care plan for what she once GOT, before she moved to her current temporary solo setting, and only a budget statement, now, the council has no lawful position from which to even start, but they still have to address the facts of your daughter’s extensive disabilities.
Her reaction to the news is evidence as to her mental capacity, to understand and experience the impact of that kind of a lifestyle being held out.
It’s solid evidence that the duty to involve her and to promote her wellbeing seem to have been overlooked altogether, thus far. The council cannot conceivably hope to defend this sort of an approach, if it is all as described and there is no change of stance before finalisation.
No doubt they would say that they intend to do better, in terms of formal process, ‘soon’ but only really close to the move in date when you will feel like there’s no time to fight. Do not let it get to that stage!
We appreciate that you will likely be afraid as to what will happen either way: but if your daughter says her own kind of ‘thanks, but no thanks’ to this hinted-at care plan, on the footing that it’s not lawfully defensible, she cannot be regarded as capacitated to do so, and refusing a care package unless the council’s high cost funding decision-maker has been explicit as to what the council will provide instead.
The fact that she is currently costing the council some £4265 a week is unlikely to lead them to say, ‘Well that’s fine, off you go to a care home, then’, to our minds. They would not have been funding independent living in a sole occupancy setting, at this level, if they had any other options.
If she says ‘ok’ and just puts up with it, you could just wait and see what happens.
But if her past reaction to being ‘minded’ inactively, has determined you not to accept that, this time round, then you have no option but to stand up to the council and use public law principles and the route of being her litigation friend for liaison with legal representation, to stop this in its tracks.
Complaining and going to the Ombudsman if the complaint is rejected will take too long and is not an appropriate solution for such fundamental illegality, to our minds. Ultimately we think that sending the link to this blog to the management and the council’s Monitoring Officer for a decision on whether the facts amount to a likely contravention of an enactment or rules of law should be enough. The MO is the chief governance officer and there is one in every council – usually it’s the head of the legal department.
Tips for getting legally literate:
We would recommend this series of free podcasts first: https://www.youtube.com/@cascaidr
And reading the Care and Support Guidance on care planning and revisions (Chapters 10, 11 and 13): https://www.gov.uk/government/publications/care-act-statutory-guidance/care-and-support-statutory-guidance#person-centred-care-and-support-planning
Or signing up to our weekly Alert Service to receive a curated steer about cases and ombudsman’s findings of fault, via email or a WhatsApp group: https://cascaidr.org.uk/cascaidr-asc-alert-service/
This costs only £30 a year, per person.