Archive for Social Care Myths – Page 2

Questions for the CASCAIDr #HosDisChat 8pm 12 Dec

Please use the hashtag in every tweet (copy and paste for speed) and A1, A 4, A10 etc, to tie your thoughts to the relevant question. 

Advice on how to set up streams on your twitter tool is here:

For a stream for the whole chat, use #HosDisChat for the search instruction within Hootsuite:

For separate streams for each Q and A put this type of SEARCH instruction into a new stream that you can set up on eg hootsuite, for each of the 10 questions,

  • for Q1 and all the answers to Q1, excluding retweets,  enter: #HosDisChat AND (q1 OR a1) -RT

 

Fitness for hospital discharge and ‘clinical optimisation’ – who is accountable for these decisions?

Q1    Premature discharge is a breach of a duty of care, foreseeably likely to cause physical or mental harm to the person – and no doubt a serious incident and something that triggers the duty of candour. What stops that happening, in current discharge systems designed to get people out as fast as possible?

Q2    Does your local system actively consider NHS rehabilitation, NHS funded intermediate care and split packages of health and social care, before it considers checklisting someone for CHC and discharging those who don’t get positive checklists?

 

Options for integration of health and social work inputs, in the context of hospital discharge

Q3        Social workers in hospitals, used to be the norm – but an integration-based alternative is funding a social work, equipment, adaptations and homelessness rights service as part of a hospital’s system (or a joint ‘discharge to assess’ system) is  – is anything like that happening in your area?

Q4        Care Act functions can be delegated to NHS discharge staff – if they can be taught how public law works and trained to apply a carer blind approach and the Care Act criteria to an assessment. Why isn’t this being done as much as it could, do you think?

 

Checklisting for CHC – not mentioned in the Care Act’s hospital discharge schedule, and on its way out?

Q5    Does your local hospital discharge system checklist ALL its patients with complex needs, including self funders, or only the ones who’ve come to the attention of the local council, for assessment of a council funded placement or package?

Q6   What do you think of plans to raise the threshold for positive Checklisting, so that fewer people go on to get full MDT consideration of the mapping of their needs, as proposed by the Department of Health in a recent consultation here?

 

Choice rights, top-ups and arbitrarily low council/CCG rates for placements

Q7    What percentage of care homes in your area are now asking for top-ups before they will admit an elderly hospital discharge patient to a room, via a council placement? Does anyone know the difference between a top-up want and a need that’s just part of proper care planning?

Q8    What steps does your local council take to make a professional judgement on the suitability of available vacancies for the individual’s specific needs, before asking relatives to help the council decide, or consider paying a top-up?

 

Transparency regarding a home care offer, and cost-capping culture amongst councils and CCGs

Q9    Does the council or the hospital discharge social worker explicitly identify what would be funded at home, before offering a care home placement, or after any refusal to accept one by the patient or their family?

Q10    Is any home care package that might be offered to a person not wanting to go to a care home, capped, in policy or in practice to the council’s expected cost of placing the person in a care home, BEFORE the individual’s needs have been assessed under the Care Act?

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“We the purchasers can tell you whether someone needs specialist skilled staff”

For any provider management, where pride is taken in staff training, the notion that their great skills are particularly suited to the care of people with a specific condition, is natural, and of course the more skill they have, the more likely a good outcome is going to be.

But for a purchaser, the devil is in the detail – who decides whether a person NEEDS specialist care? And for the care home market dealing with common problems like dementia, just how good does the service have to be, to be adequate? Aspirational levels of care are not what the statute requires, and deliberately so, or else why would anyone ever save up money to make their OWN choices?

If that is a reality in terms of the culture, who’s going to say that dementia care is always specialist care? People will recall that in the old days, one used to walk into a care home on one’s own legs, and not be stretchered in – and yet as the market got more sophisticated, and people were supported at home for longer, councils did not volunteer to pay nursing home rates to residential care homes: previous attention characterised as basic nursing in a nursing home, before FNC, started to be redrawn as residential care, albeit as a higher band, if one was lucky, as a provider.

As between a purchaser and a provider, there will be a contract, in writing, or based on fact. In return for £x, the provider will do or deliver, a set of inputs and outcomes. If that provider wants to charge a fee based on specialist staff skills, it will be making itself more expensive to the purchaser, than organisations who say that their staff have been on a short course in that specialism – and on that footing, can charge a lower fee for a semblance of skill, but without purporting to be offering the moon.

If there’s a fee band for ‘standard’ clients’ core fees, and an enhanced fee for those who ‘need’ specialist skills, and a provider has tendered for that contract, and signed up to that sort of a term, you can bet your bottom dollar that the decision-maker as to that need will be the purchaser, and hat at some stage, someone will purport to decide that nobody from that client group NEEDS a specialist service any longer.

The provider’s only recourse, in that situation, which requires GREAT strength and integrity in hard times, is to refuse to TAKE the client’s care ON, unless and until the purchaser sees things the same way.

Or give notice to someone, if the purchaser really thinks that the skilled input has not merely MANAGED the need, but managed it into evaporation, justifying a cut in the contractual fee.

One thing a purchaser will say is that since the council or CCG is the care planner, the care plan should be reviewed and revised down, and if less input is needed, then a fee reduction should be given. The trouble with that is that the costing model of most specialist providers is not that each person is charged for wholly individually, but that core costs are divided up between the number of residents or clients – in a unit, a county or even country wide, for the bigger companies. That means that the fee per person is not merely the sum total of the cost of the inputs, plus profit – it is not dependent on exactly what is provided, and the care provider can’t remain viable if each person’s care plan only generates a personal budget on some other more highly individualised footing.

A bit of contract law comes in handy here then, for providers. Who decides what is needed? The council or CCG. But who decides what is provided, or sold, and what the price is? The provider. The provider is in charge of how he or she packages up his offering, and sets that out, on the stall. That is the invitation to treat in contract terms. The purchaser makes an offer, and the provider, ultimately, accepts the offer.

Public law duties owed to the service user actually support the provider and service user in this regard: in this year’s Merton case the court decided that it was not possible to say, after years of making the most of the provider’s specialist services, for physio, SALT and sensory stimulation, that they were no longer needed, just because there were now other models of care for less money, where those services would not be available, in house. There was no justification for terminating the package, as the stance emanated from the panel and not from a proper assessment of the client, the court said.

This is not new law – the Killigrew case, in 2000, said the same thing, regarding a woman who’d had 12 hours of company a day, by dint of a package that had met her needs which included unpredictable seizures. The package was reviewed, and it was proposed to be chopped up into chunks with big gaps between inputs, just because it was becoming a two person staffed package, as the woman’s husband had developed a back problem. The maths involved in trying not to spend any more money, whilst having to put in two people, could not determine the professionals’ view of need, in that case, any more than the panel’s desire to save money could count as a rational justification for something not being needed, any longer.

The judge said this, upholding Mrs Killigrew’s challenge to the rationality of the plan

26. What was needed was a very careful assessment of why, if that was the case, 12 hours care was no longer needed. The importance of the respondent satisfying itself that this was the case is obvious. The applicant and her husband were asking for at least the 12 hours care to continue. Her condition was inevitably and steadily deteriorating. Not continuing the 12 hours care could, it was being said, have serious consequences for the applicant, and was certainly likely to cause deep distress to the applicant …On the evidence available before me, the reduction could only be justified if there was no continuing need for 12 hours care and not simply because two carers were needed when only one had sufficed earlier.

There is no proper analysis of why the 12 hour Care Plan had been originally adopted. What were the perceived advantages of that plan at the time of its implementation? Why are those perceived advantages no longer seen as advantages, if such be the case? If, to quote the earlier plan, the 12 hours care was chosen to help with the tasks of “supervision” and “of appropriate stimulation”, it is likely that in the event (for example) of no emergency, other things will be done.

What is important is not to assess what happens if there is no emergency, but what will happen if there is an emergency and no one is supervising her.

“The care manager concludes by saying that “social services would not normally provide carers ‘in case’ someone had a seizure and ‘could not be expected to do so'”. That, in my judgment, is an overly simplified approach to the problem. It may be that in preparing a Care Plan the author could reach a conclusion that given the infrequency of a person’s epileptic fits it would not be right to provide continuous supervision, but before that conclusion can be reached, a great deal more has to be done by way of examining the condition in which the person finds himself or herself.”

 

So this myth is a myth in part: it’s not untrue to say that the council or CCG can assert that specialist care is not needed, but that has to be done on a proper evidence basis, to be lawful, and the longer it’s been provided, the harder that will be, unless there’s been a real evaporation of need.

It’s not true either, that this feature of care law has any consequences for a provider, other than in so far as the fear of competition may be enough to make a provider suspend all rational business good sense.

 

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“If you have epilepsy, technology will enable your night time needs to be managed”

Technology can undoubtedly help people live a more independent life.

Some tech works to monitor specific people’s movements (will we be chipping people in the next decade, if it’s the least restrictive thing to do?), some to track activity of any sort, some to warn of factors that might suggest that all is not well.

Some tech works to call for help, if a person is conscious and capable of remembering to press a button say, on a pendant alarm, always assuming that they are physically capable of doing so, in terms of what’s just happened to them.

If, on the other hand, one is prone to spells of loss of consciousness from a seizure, or hypo-unaware episodes, from diabetes, or one has autonomic dysreflexia, or severe unpredictable asthma attacks or whatever,  it is simply not logical to suggest that having a warning about it in advance is going to make any difference to whether or not it happens. A warning will help manage the episode, of course – and that may help a provider to reduce staff ratios over a large group of people, without being negligent or neglectful. But only if there is someone there to respond to the tech and the tech is reliable. It is the consequence of the condition that needs to be managed, and some episodic conditions have severe consequences unless someone is on hand, very quickly. So the mere existence of the tech is not enough – rationally – to say ‘that will be sufficient’.

Epilepsy is an interesting example: sensor mattresses are able to take readings of bodily signs of a seizure and do that precious thing – alert someone to be on hand, quickly, with medication and comfort and protection.

That has undoubtedly changed the profile of night time care in independent living and in care homes, because staff who are awake are less crucial and staff who can be woken, by the tech, may now suffice, or even staff off-site, as long as close by.

That’s a model that can really work to normalise the lives of people who have unpredictable seizures. It’s telling for these people that Severe on the Decision Support Tool is not a level of need that it’s even possible to have one’s seizure’s mapped at, for Continuing Health Care eligibility purposes, as if the DH always knew that too many people would qualify, then, if that were even an open score for MDT professionals. So most people with epilepsy get stuck in High for the domain of Altered States of Consciousness (the few who are scoring Priority, already likely to be in a semi-hospital environment) and do not qualify for CHC, not, at least, without other issues attracting Severe scores…

Any provider taking on the care of people with epilepsy needs a kegally literate insurer, who understands that people can and do die suddenly, without negligence necessarily being involved.

Tech, to some extent, minimises the risk, but tech that is not attended to will lead, ironically, to a higher level of legal concerns, on the footing of say ‘if only the maintenance and inspection schedule had been more frequent’ or ‘if only the staff on duty that night had not been so busy on other clients’, the harm would never have occurred. So any provider, in any setting, involved with people with epilepsy, must take all practicable steps to resource the responsible use of the tech, if going in that direction.

Who is it for, this kind of myth-based thinking, then?

Assessors are not able to say ‘Because you now HAVE the tech, we can treat the client’s needs as met in future, with a sum that bears no rational connection to the needs’. The Perry Clarke case is an example of that kind of daftness – with commissioners with clinical skills (a rarity in itself, and a good model, in theory) asserting that what with the gentleman’s nighttime seizures averaging 3 a month, a budget one third of what had been required by a provider for the previous 4 years, would suffice.

Evidence from a specialist neurologist and an epilepsy nurse documented active epilepsy, night seizures and risk of status related to stress and any non-compliance with medication, and injury from falls and 1-2 unpredictable tonic clonic seizures a month.

The provider’s evidence about its provision included its bespoke alarm system, staff trained in all emergency medications administration, and highly skilled management of prolonged seizure activity with access to 24 hour support and monitoring, including waking night staff.

During the pre-trial period, the council raised the allocation amount a little and said that Mr Clarke needed “Waking night support for 3 nights per month, in anticipation that your client will have up to 3 seizures a month during the night”.

Instead of accepting that the provider’s business model of charging per week was valid in relation to the need for 24 hour support, the council purported to assess as an appropriate response to the above profile of need, the following TIMED services:

  • Support for 3 hours for 7 days a week to assist him with taking medication, meal preparation, eating/drinking and showering and bathing
  • Support for 3 hours a week to assist him with cleaning, budgeting and managing bills and correspondence.

The council purported to allocate money for these needs at a level of £661 a week as a direct payment. The council did not consult the claimant before producing the updated plan; nor had it explained how it evaluated the claimant’s needs to produce the weekly figure of £661.

The council did not call for its own independent evidence, from any consultant or other experts in the field of epilepsy treatment or care. Although it had available to it the opinions expressed by the claimant’s consultant, GP, epilepsy nurse and care provider it effectively relied on the judgement of a social worker who did not claim to have any medical skills or qualifications.

The provider, said this:

“A waking night’s staff allocation for three nights a month would put Mr C in danger as it is nonsensical to suggest that assistance with medication is only needed some of the time. Additionally, his seizures are not limited to nights. They are whilst sleeping. This puts him at risk of death. So, he could easily (and often does) have a seizure whilst sleeping in the morning or early afternoon. That is why he needs 24 hour care. Sleep in support would not be able to respond to a seizure in time.”

The judge held in favour of the man and said this:

“In my judgment the assessment by the defendant demonstrates a failure to understand and address the claimant’s medical and support needs. This is most apparent in the approach adopted by the defendant to the provision of support to provide three nights waking care a month against a background of medical and other evidence which demonstrates the need for 24 hour care in circumstances in which seizures, including sleep related seizures are unpredictable and cannot be pre-determined. The explanation as to the basis upon which three waking nights care a month are included within the package as offered in the hearing before me simply does not make sense and does not address the needs identified in the reports from the medical and other professionals.”

Purchasers (commissioners, that is) often think that if tech exists, then the provider should be ‘incentivised’ to invest in it by being offered less money, on the basis that competitors are doing so too, and the commissioner is able to go elsewhere UNLESS this provider falls in to line. That’s a great example of why we’re in the state we’re in, we think, across the sector. If a provider would need to invest to a significant extent, in order to be able to make changes, but has no money to do so, then cutting the going rate, by use of a dominant purchasing position, isn’t logically, commissioning for sustainability. It’s commissioning for market failure.

In any market based situation, the number of placements or care packages that the council NEEDS to buy to discharge its own duty is the base line for the thinking about how to do this. If one is the Hertfordshire council and CCG, for instance, it is foreseeable that a lot of people coming out of St Elizabeth’s – a specialist setting there – are going to want to stay in the area, and more than just the few who need specified accommodation with continuing ordinary residence responsibilities being shouldered by the clients’ previous councils.

In such an area, an innovative thing to do, to foster competition and new entrants to the market with the necessary skills to offer viable alternatives, would be to offer a development prize for any providers who might like to invest in tech, to see which will then use the tech most advantageously – a best value approach, to get quality AND competition back into the provider market.

We do not think that that is unlawful State Aid but will no doubt be put right by others, if it is…

 

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“Our response to carers’ needs is a set sum of money – that’s what we’ve always done”

Under the old law, pre Care Act, carers were entitled under the legal framework to assessment under many different bits of legislation, and entitled to be told of their rights, under yet other bits.

But assessment was often a euphemism for a sympathetic chat and a lot of approval for being so willing and able to do such a good job. Not a gateway to services, or enforceable legal rights.

It was possible under the old law to be regarded as BEING carer, and being very much in need, but that state of affairs still did not trigger a legal right to a service or a budget than an individual could enforce by way of judicial review.

IF one was regarded as deserving, one might be offered, in the discretion of the council, and not pursuant to any duty, in the law, a range of types of support:

  • A sitting service so that one could get out to the shops to get all the things the loved one being cared for, needed, and for running a household
  • Respite – services or money that could be spent on backfilling time when the carer was not willing to be doing the care – these services were often capped to a particular amount of respite days or events or stays, per year. Some were in care homes, whilst some services would go into the person’s home in order to let the carer go away him or herself – that would be care at home.
  • A carer’s ‘grant’ – a sum of money to spend as one wanted – usually a rounded arbitrary sum which everyone in that carer category, was given
  • Something for You – ie a sum of money to spend on oneself, for a treat, that would compensate in some way for the exhaustion factor – a voucher to a spa, for instance – if that was what you’d really longed for and spoken up about.
  • Hub-based services that were designed to support carers through introduction to networks, and advice and information – often accessed through the same voluntary organisation that had been contracted by the council, to do the carers’ assessments.

Once a council had decided to meet a carer’s needs, there was legislation in place for turning that money into a carer’s direct payment, under the old law, but that did not often happen, in practice. Carers were more often given the direct payment of their loved one to manage, and that is not at all the same thing, and is not even legal without decisions first being taken about capacity to request a DP, or without the carer being nominated by the holder of the DP to be their manager.

Although all these ways of relating to carers, under the old law, were based on a discretion, rather than a duty, and could therefore be withdrawn without any formal steps,  the case law had moved on before the Care Act was finalised. Caselaw was suggesting by analogy in service users’ cases where discretionary services were withdrawn (and in closure situations too for preventive services) that withdrawal of even discretionary services, if they were important enough to the notion of the person’s place in society – withdrawals without notice or good reason – would impinge on a person’s human rights, and have to be conscientiously justified.

Even without Human Rights, it would always be possible for the courts to treat a service or an activity as such an important area of a person’s life, that common law principles of fairness would be said to have required notice and reasons in any event.

So when the Care Act was being drafted, it was no doubt considered to be time to put the rights of the carer on to a clearer basis.

Carers were given fresh Care Act rights to assessment for their support needs, rights to an eligibility decision about those needs, rights to a support plan under s25, and the implicit right to turn the budget into a carer’s direct payment.

Respite (replacement care) was also made, indubitably, from then on in, a service for the client, not the carer. So respite costs are not part of a carer’s care plan any longer (although a sitting service might be, because its purpose is to underpin other aspects of care being provided; the carer is not at leisure; they are still ‘on the case’, as it were…). There’s another myth busted about that, later on – Myth no. 10 if you’re interested in that one.

So, it’s been the law since the Gloucestershire case in 1997 that once a person is eligible, their budget must be appropriate and adequate enough to survive judicial review scrutiny (ie not be unlawful, irrational, unfair, etc).

That duty – regarding the size of the budget – is individually enforceable, because the duty is owed to each eligible service user.  The Cambridgeshire case, many years later, reiterated that there has to be a rational nexus between the needs and ‘the points’ in a resource allocation system (ie how much care, and for how long, and how often?); also between the points and the pounds allocated (ie what type of input, if it all costs different amounts?), and finally as between the points x pounds figure, and the real cost of the required inputs, from the local or other relevant market. That’s what ‘rational’ means in public law.

So, although it’s taken a long time to get here, we are thinking that if that’s the law for service users, still, under the Care Act, (and it is) then it has to be the law for carers too. 

Yet what is happening out there?

If a change in the law has trebled the number of people who count as carers, by removing the condition that regular and substantial care must be provided before one even counts at all, then clearly a council’s desperation to spend only the same amount of money as before, on that trebled group, now, is going to mean that either all carers get less or that the council has to give points to the input so as to reflect relativity between all of them. The points might be awarded, according to who does the most, or who suffers the most or who saves the council the most money because of the nature of what they do, regardless of the amount. The legality or rationality of this, in view of the purpose of meeting the carers’ NEEDS, as assessed, has not been litigated as yet, so it’s all up for grabs.

Various resource allocation schemes out there, attempt to do this in one way or another: some with banded rates; and some with impact scores. The fundamental problem we have with these is that neither sort of variation pays attention to the actual domains in which the carer has been assessed as unable to achieve.

One would not dream of doing a budget for an actual user of care services, without thinking to what end was the money to be directed, and that end MUST be the reducing of impact experienced from the person’s inability to achieve the eligibility domain tasks, down to something less than significant. Why woudn’t one aim to do the same with carers’ budgets, CASCAIDr would have to ask, rhetorically? So IMPACT score related sums of money for carers, are more likely to be legal than simple banding schemes dependent on AMOUNT of input, or money saved, but better still would be simple costing of what the carer, individually, actually needs to be able to cope in relation to specific domains. So, cleaning services for those struggling with maintenance of a habitable home environment, for instance. A sitting service and the cost of access to a gym for physical or mental wellbeing issues, perhaps. It’s all ‘facilities’, under s8.

Carers need to take note that they may need to do some thinking too, as to what WOULD actually meet their needs for support if they are going to carry on caring. It is ultimately a question of evidence as to costs: a cleaner, to compensate for the fact that one has done 3 nights of night time care, may cost £10 or £11 an hour in some parts of the country, and a lot less or a lot more, in others. You can’t make it up as you go along, and you can’t take judicial review proceedings against a council without a strong case that they’ve ignored credible evidence.

And more so than with a service user’s budget, what is done for a carer, is ultimately a negotiation too. What is it that would make you willing and able to go on a bit longer, or is it really time to stop?

We don’t want to finish this post without saying very loudly that a carer can’t JUST be offered a sum of money, on the footing that it’s a Grant, and something formal in the system. The only statutory function under the Care Act that enables the giving away of money is the direct payment function, and that turns on a REQUEST. That is, it is not the default route for a carer, unless they want the money, as opposed to a service. The default duty for any council is to provide carers’ with support services so as to meet their needs – they can’t just have the money foisted on them, unless they want to be supported via that route. So the far bigger myth out there is that MONEY is the only carer support that needs to be offered. Legal rubbish!! Even if it suits most carers, there will always be ones that it doesn’t suit, because of the difficulties that they are facing. Maybe that will be made clearer in the Green Paper next summer. Or even a chapter on carers might appear in the statutory Guidance…

We can’t absolutely say that set rates for carers being perfectly lawful, is a myth, as there’s no case on it yet. So we can’t bust it.

But we would venture to suggest that now we’ve set this stall out, as to why it might be, and now that carers and advocates will have been made more aware of the issue, council strategists having another think about it, in general and in specific individual cases, would not be a bad idea.

That would make a challenge much less likely.

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“You can’t count as a carer if…”

 …your relative is already

  • in a care home,
  • in supported living,
  • in hospital
  • or entitled to Continuing Health Care
  • or s117 Mental Health Act aftercare

One of the major new things about the Care Act, was that it changed the notion of what you have to do in order to count as a carer.

It didn’t change the definition for Carer’s Allowance, please note, because that is a benefit, not part of the social care system.

What it did change, forever, was the idea that it was up to the council whether or not you were doing ‘enough’ to deserve to be assessed, or whether you were saving it enough money by virtue of your impact, to get a Carer’s grant (a set sum of money, per year) or a carer’s direct payment for meeting your own needs. Those responses, if the council thought you were deserving, were entirely discretionary – which means, in English, that if there was no money, you would need to cross your fingers or shout very very loudly.

This was because the definition of being a carer, under the old law, was about ‘regular and substantial care’, and woolly language like that does mean that councils had a lot of leeway, when they were short of money.

The old law gave rise, too, to a notion that ‘care’ to count, had to be something that was meeting eligible needs, above the old local Fair Access to Care Services threshold, and that what family members did, in one shared household, or by way of company, sorting out paperwork, running one’s loved one around all the time, etc. was not care. It was regarded as ‘natural support’ or TLC, for want of a more specific description, so that however much of it one might have been doing, it didn’t really count towards the threshold for providing regular and substantial support.

So, in came the Care Act in 2015.

It removed any reference to regular and substantial care being part and parcel of any rights specifically provided to ‘carers’.

It made it a legal provision that care includes ‘practical or emotional support’ in s10, so it can’t be said not to count, any longer

It gave carers, rights to be involved in loved ones’ assessments and care planning processes (although it didn’t define ‘involved’!)

It gave carers the same rights as service users of Care Act services, supposedly (according to the Guidance, at least) eg a right to assessment for support needs; a right to an eligibility decision; a right to a personal budget if one is found to HAVE eligible needs – and a right to have that budget turned into a direct payment, if one meets certain criteria in the opinion (the reasonable opinion) of the council.

So, overnight, an awful lot of people who had not been seen as carers before, became carers, now, in legal terms, and got some important legal rights.

If one is in a care home, one may well be getting 24 hour supervision, but if one is being visited by one’s friends and relatives, providing practical or emotional support, by whatever means, (supporting the feeding task, for instance, or with mobilising or even toileting) then they count as carers, even if they are not wanting or needing an assessment for their support needs.

If one is in supported living or Shared Lives arrangements, one is (other than exceptionally) a person living in one’s own home, and one has access to a normalised lifestyle and relationships with all the people who already mattered: they can all count as carers, if they are providing practical or emotional support.

If one is in an acute hospital, one may be visited, wheeled around, walked up and down the ward, brought things, get one’s laundry done, and have one’s affairs managed with input from oneself or not even that, depending on one’s capacity at the time – all from one’s hospital bed. That is all care, for Care Act purposes.

If one is a Continuing Health Care patient getting free care, one might be in any given setting, with one’s relatives and friends contributing to the care package and spending time with the person: the NHS benefits from not having to spend money to do what these individuals are doing, but that doesn’t mean that they’re not carers for Care Act purposes. The National Framework says so, and it makes perfect legal sense.

The same is true for anyone released from compulsory detention under the Mental Health Act: s117 entitles all such people to free aftercare, for their mental health rehab needs, but they are not Care Act patients for those services. Their carers – that massive band of people AROUND a mentally unwell person – often massively affected by gaps in the community mental health Trusts capacity to provide services direct to the client – are all carers under the Care Act.

The person you are caring for does not have to be eligible for services under the Care Act, in order for you to count as a carer.  It doesn’t have to be hands on care; it doesn’t have to be intimate personal care, to count, and the setting where one is doing it makes no difference at all. 

The Care Act gives carers legal rights – the Guidance doesn’t make it easy to find them, as there is no chapter for carers, but if anyone who counts as a carer gets a bit more legally literate, it can only help the overall situation.

 

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“You can’t have an assessment until you actually come here to live, and have arrived”

It makes obvious sense to most of us, we think, that our needs depend to an appreciable extent, on our environment, and our community, and what’s available locally. It is equally obvious that if we’re 300 miles away with just a vague interest in going to live on the other side of the country the social work workforce from our hoped-for destination authority isn’t going to be exactly keen to come out to see us. Not unless we are on the coast and it’s summer, or Knightsbridge in December, perhaps…

However, people who depend on social services funding for a sustainable civilised life style, despite their difficulties, have as much right as anyone else to decide where they want to live. How are they supposed to know what they’d get, if they made the move, if they can’t be assessed before they make up their minds and do the irrevocable, like surrender a tenancy, or sign a new one?

Just like for anyone else, really being entitled to go live anywhere one fancies, depends (in the real world) on being able to afford the rent, and seeming like an acceptable tenant to a landlord – a landlord who owes the prospective tenant absolutely no duty of care in relation to sorting out care services that the person might need to be in place when s/he makes the move. If one isn’t renting, but buying, real practical freedom to go anywhere is also subject to having a financial profile enabling access to a mortgage for the purchase price of the property  – or having access via friends, relatives, contacts, to accommodation IN that other area, courtesy of a private agreement.

(In passing, we are thinking what a VERY good use of a network of disabled people that would be – swaps of spare rooms, if anyone has one, in order to build local connection and housing rights and ordinary residence in ORDINARY accommodation…. but that’s for another day…)

That said, the Care Act made significant progress in the field of who deserves an assessment from whom, in the context of moving from one area to another.

The two provisions (s38 and s39 cover two different situations. In one, continuity of responsibility of a council for paying for care, is imposed, even though a person chooses to move out of area. And the other provision introduces the notion of continuity of the care package – well, at least of the sort and scope and level of care as one has had before, when one moves somewhere new, unless or until the council in the ‘new’ authority assesses that person properly as no longer eligible, or no longer needing what was previously needed, with a rational and written justification for differing from the last authority.

The first situation (continuing responsibility albeit out of area)  is where ‘specified’ accommodation is agreed to be needed before the person goes, and that is basically the case where the person needs a lot of supervision in accommodation regarding their personal care. The only kind of setting where that is possible, in terms of space or logistics would be in a care home first and foremost, or in supported living (or in some kinds of Shared Lives arrangements), even if the person is not so needy as to need care in a registered care home.

The law says that in such cases, the council that WAS responsible for care, by reference to ordinary residence principles before the move, must go on being responsible, even if the person is moving into tenanted accommodation elsewhere, and that move is what necessitates a large care package. The logic is that the old council will be remaining liable, so would be reviewing the person anyway in light of the planned destination’s local care market realities.

This outcomes only applies though if the council one is leaving has recorded in a care plan that the way the needs require to be met is IN specified accommodation. We think that that’s a massive loophole in the scheme, when most councils’ forms for care planning don’t even have a box into which one would put that all important sentence. And that’s before one considers how hard it could be to GET a council to put that down, when it’s not had to provide a large package before, because of informal help, but where the move itself will terminate that informal input. Finally the Care Act is obscure here, on the extent to which the client can have a choice of provider in that new area, if the cost THERE differs very much from the equivalent cost of a package in the area one is leaving. CASCAIDr thinks that the only comparison the responsible council can do is between SUITABLE appropriate care in the destination area, and the provider preferred by the determined ‘mover’….and that will be hard for an out of area commissioner.

The second situation covered by the Care Act applies where a person (whether or not they have care needs already) decides to move to ordinary accommodation elsewhere, or is moved to it by a relative, with the person’s capacitated consent, or acting under best interests.

In both those situations, the law gives that person a RIGHT to be assessed BEFORE coming, so long as one has a genuine intention to come.

It is completely ambiguous in the Care Act as to the right approach to take when the person had no such intention for themselves, but their relative took the initiative because of incapacity, but it is a fair bet (from the approach taken in ordinary residence cases) that other than where it was abusive to remove the person from their previous setting, the new council must pick the person’s care needs up.

The theory is that a person will actually GET their assessment before they’ve made a final decision, so that they can, like anyone else, make a proper decision, well informed, based on knowledge of whatever budget or service or input they would receive, if they made the move.

In theory again, it would be possible and SENSIBLE for each area to have a company that could be contracted to do assessments for people who are planning on moving out of area – or who have been moved out of area such as CHC patients who are up for review, for instance, and for people who are genuinely considering moving long distances (and for people with no plans to move, living within that area too, for the local council. when it is pushed for staff).

But that is not what is happening.

In practice, people get told that when they arrive, the new council will sort out a similar package of services to what they’d had before, and then put them down for an assessment within the next 3 months. That doesn’t deliver on the policy intention to enable people with conditions or disabilities that compel dependency on the State for services, to be free to make decisions as to where it would be best or make the most sense to live. But it does ensure that nobody’s left high and dry.

What is clear though, is that it is not acceptable to say to a person you cannot have an assessment before you come. Most people would accept the desirability of waiting until they are settled in, but some will absolutely need to do the thinking in advance. For those people, it isn’t good enough to say ‘What we do is this, so just come on down, and cross your fingers‘.  The only remedy for that sort of a stance would be an injunction in judicial review proceedings enforcing the statutory right in s38.

In CASCAIDr’s view, the very furthest a council can go is to say please wait until you at least know where you are going to be living, or in what sort of accommodation, and then we’ll be able to do an assessment – as a sort of definition of what reflects ‘a genuine intention’ to make the move. There is rationality in the notion that nobody intends to move until they know about their housing situation in the desired area. A council can not say ‘We won’t even meet your needs if you just come down and live as a single person, because we need savings from your living in group care’. It can say ‘You know you need to meet certain criteria to exercise housing rights in this area, don’t you? (that is, to people who don’t have relatives with whom they can go and live).

Housing rights are limited, in Housing law in this country.

There’s joining the housing register, for a tenancy in affordable housing, which is harder now than it used to be, because councils are allowed to add criteria regarding local connection to their letting schemes, for public sector owned accommodation or housing provided by registered social landlords. In lots of councils now, you have to have been there for a long while before you can GET access to public sector housing through the housing register.

Specialist supported housing which is not in the control of a council on the surface will often be subject to such control through nomination rights behind the scenes, which were granted when the RSL was given the land to build adapted accommodation, for instance.

And here is the rub: social services is not bound to FIND, secure, or procure, suitable accommodation in the ordinary housing sector for people who need it, even if they have disabilities or health conditions. They can help one to get it and influence one’s chances by way of supporting corroboration of one’s account of one’s needs, or through discussions with the housing department about why your current accommodation does make you homeless etc, and why some of the council’s allocations for adapted housing should be regarded as in the gift of the local authority, as between the two departments. All of that is helping the person to help themselves to get suitable accommodation.  But the bottom line is that a tenancy is not something that is offered by a social services department under the Care Act. Even special specified accommodation where personal care will (by definition) be available for a person in the place where they are living is not something that the council has a duty to provide, even if it has a duty to pay for the care services, once one has taken up a tenancy there.

 

So it is a myth that one has to move first, before one is entitled to assessment, but in practice, the pressure will be on to do so.

 

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“We can tell you how much we’re going to cut your budget by, without any other process or negotiation”

Oh dear, do people really think that this is the law? Where shall we start?

Once a person has got public money going into a care package, they have legal rights under the legal framework for health or social care, under common law principles of fairness, and under Human Rights still current in this country (although not for much longer, we gather).

The legal principle pre Care Act had been settled for nearly 20 years, since the Gloucestershire case: although a person’s care package CAN be cut – legally and for all sorts of good reasons – including the council being harder up than it was last time around – always subject to the lawful meeting of ongoing eligible assessed unmet need (that is, adequately and appropriately by reference to competent professional judgement)  – IT CANNOT BE DONE WITHOUT DUE PROCESS.

Under the old law, that concept of due process was tied to something called a review. There was no mention of review in the legal framework, pre-Care Act, but it was expected, by government guidance to be done annually for each person. The notion of a review meant looking to see if what had been put in had worked, and whether it was still needed, to meet the needs that had been identified last time round on assessment, or if the needs had gone away or lessened. The notion of a lawful cut involved then, as a minimum, a review that focused on needs and whether they had changed or whether (in the days of Fair Access to Care Services criteria) the eligibility threshold applied locally had changed.

Putting it simply, IF a care package was cut, or bits dropped out of it for whatever reason (eg provider staff changes etc) the rule was that if it was IN the care package, and it stopped flowing, that was a breach of statutory duty, unless there had been a lawful process for changing the care plan.

You can perhaps see, now, why CASCAIDr’s founder was not much enamoured, ever, of the idea of OUTCOMES based care planning, rather than an approach that specified INPUTS as well. Explicit inputs and requirements are the bedrock of a client HAVING any enforceable legal rights, so it was disingenuous for the commissioning world ever to suggest that the flexibility that comes from outcomes only care planning was an unadulterated good. Flexibility is wonderful if you have a direct payment and have been assured you can use it for meeting outcomes, but no good at all if you have a care plan where the council can bully the provider into a lower and lower fee behind the back of the care plan, because there’s nothing specific IN the care plan to treat as an irreducible minimum!

The law under the Care Act is now found in s27 which puts review and revision on to a statutory footing. Review is not the same as re-assessment, and nor is it the same as revision of a care plan. A review is a look to see if what had been provided has worked and whether anything has changed. That will only very very exceptionally now, ever be the eligibility threshold and criteria themselves – because they are laid down in regulations that won’t be able to be changed very often, by government. Not without uproar. The evidence as to any change of needs, whether up or down, explicitly triggers a proportionate re-assessment if anyone is going to change the PLAN as a consequence – not necessarily one that goes back to square one, but which focuses on the aspect that is thought to have changed. If a care plan is to be changed not because of a change in needs, but because of a system driven change, like the market price, or a new commissioning strategy or a re-tendering exercise, or Health agreeing to go back to medicines administration, or whatever, a proportionate re-assessment and re-planning process is also required.

So it can still be said to be the law that it is illegal, in public law terms, to cut a person’s plan without due process or to tell someone ON A REVIEW under the Care Act, that they ‘will be getting less of this that or the other’ regardless of, or without, due process and fresh, rational, lawful, fair decision making.

Phew!

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“If you disagree with the budget we offer you, we don’t have to give you any service in the meantime”

On one way of looking at the Care Act, no duty to provide arises, until a care plan is signed off.

That’s not right,  however, in terms of what the Act says:

18 Duty to meet needs for care and support

(1) A local authority, having made a determination under section 13(1) [that’s the eligibility determination] must meet the adult’s needs for care and support which meet the eligibility criteria if—

(a) the adult is ordinarily resident in the authority’s area, or is present in its area but of no settled residence,

[and then a whole lot of things to do with the charging framework, not relevant for these purposes]

Management may well say ‘Until we’ve had the panel discussion as to what it’s appropriate to provide, there’s no personal budget.’ That overlooks the whole purpose of the Act, and it’s not even the full picture: emergency provision under the Act is specifically authorised before even an assessment has been started or finished, let alone a care plan.

And the Guidance specifically says that a dispute as to provision cannot be used to avoid meeting needs.

See here:

10.86 In the event that the plan cannot be agreed with the person, or any other person involved, the local authority should state the reasons for this and the steps which must be taken to ensure that the plan is signed-off. This may require going back to earlier elements of the planning process. People must not be left without support while a dispute is resolved.

The whole point of the care plan is to record the authority’s reasoning behind  why it thinks that x, y and z are ‘enough’ to meet a person’s eligible assessed needs, appropriately and adequately. 

And there’s the clue. The person awaiting their care plan will be someone who by definition has already been assessed as having eligible, assessed needs – needs based on the concept of not being able to achieve 2 or more domains from the list in the eligibility regulations.  Could it conceivably be lawful (or sensible, even), to leave assessed eligible unmet needs – just sat there, unmet, and continuing to have a consequential significant impact on the client – and no doubt, the wider family?

It certainly seems ‘sensible’ to management in plenty of councils, if our pre-launch postbag is anything to go by.

Sensible, in this regard: in so far as if there IS a family member or partner shoring up the situation, then every day that that situation continues just like that, without public sector input,  goes to save public money.

And since most carers do not know that they could stop or reduce their inputs, because they don’t understand that they’re not responsible for their loved ones’ care, and that the STATE is responsible, (because that’s what a democratically elected legislature has bothered to put in place, even if it is not funded adequately) – they probably won’t stop, and they won’t give up and they will carry that load for a while longer.

Never mind if that is for longer than is humanly tolerable, leads to mental and physical breakdown, causes relationship difficulties for extended families and even in rare situations, safeguarding crises, when somebody finally snaps.

It is not consistent with social work values or human rights, in the context of the legal framework for the State’ liability for adults, in the sphere of eligible assessed need, beyond the willing and able input of other human help, to exploit this kind of ignorance or reluctance to give up.

And it’s not sensible, at the same time as there is a nationwide recruitment crisis in the care sector, not ever to pay people who ARE on the spot and willing and able, but struggling financially because of shouldering a caring role, for doing the job.

We are not saying that carers SHOULD down tools, but merely that they MAY – even if they have not had a carer’s assessment – because this decision is for them, and not for the council. A carer’s assessment is just for deciding whether the council would be bound to provide some form of money or support to keep the carer minded to continue. Once one knows that, it tends to focus the debate.

If a carer gives reasonable notice to the council, the council is legally obliged to assess the needs of the person without regard to what it was that the carer was doing, and to identify the global extent of the need of that person, and then decide which of those needs are eligible under the regulations, and what it must then do to meet them, within a reasonable timeframe. That is not ever lawfully going to be able to be months or years. It might be 6 weeks before it starts, whilst re-ablement services are tried, and it might be a further few weeks, before assessment has been completed to a competent standard, with all necessary inputs gathered in and crunched – and even beyond that, allowing for negotiation and final agreement as to response, but not, please, months. 

Once a council has said what it will provide in place of a carer’s input, a carer can then make an informed decision as to whether some parts of what’s offered would still be best done by him or her, in terms of the outcome for the loved one.

Please do note that a carer cannot say that they are not going to do the input, get the budget set, and then go back to doing it and spend the money on something else. That would be fraud and misuse of a budget, because it wouldn’t be meeting the needs of the client, and wouldn’t have been needed in the first place, if the carer was not actually about to give up the care role.

If there is a dispute about what is needed, to constitute a lawful care package against that benchmark, it is not rational or lawful to fail to meet the undisputed portion of the person’s needs in the meantime, and it will then give both sides to the argument an evidence basis for resolving the dispute, in the longer term. If the nature of what IS agreed is something that honestly can’t be put in place, if it might not be the long term solution, that still obliges the council to find some OTHER reasonable way of meeting the needs in the meantime and obstruction of an interim plan, by family menbers determined to hold out for what is really thought to be necessary, is understandable, but an adult safeguarding issue, in most situations.

Many years ago, Sutton took 2 years and 3 months to fail to finalise a care plan, but the young woman in that case was being cared for by the NHS in the meantime. Those days have long since gone!  But at least she was cared for in the meantime. The 8 interim care plans that they’d worked on and presented to the mother in that case, had all been comprehensively trashed as unsuitable, and the council had ended up agreeing.

The judge was astonished to discover that the council thought that its job was to achieve consensus, when trying for that left the woman in an institutional health setting – he said a decision, almost any decision about any one of the previous plans which could then have been challenged, was the proper role of the authority. 2 years and 3 months was beyond the pale he said: no reasonable authority could possibly consider taking that long to be legitimate.

 

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“You can’t get an advocate if you’ve got anyone else who’s able to speak for you”

Advocacy funded by the local council is a wonderful thing, assuming the advocates know what they are talking about. The notion of a duty to fund advocacy for people who can’t cope with assessment and care planning or safeguarding is based on the idea that the European Convention on Human Rights outlaws discrimination in the enjoyment of other rights and freedoms under the Convention, and that therefore cognitively impaired people must be made equal in the context of the practicalities of getting their entitlement under the Care Act.

Why it doesn’t apply to the application of the decision support tool in the context of eligibility for Continuing Health Care is anyone’s guess, but that is life.

The rules about advocacy say that if you would suffer substantial difficulty were it not for an independent funded advocate, to take on the role of supporting your engagement as much as possible then you get an advocate (whether you want one or not, ironically, but never mind).

There is an exception to that right, though, if you have someone else, who’s appropriate to support you informally, and willing to do so.

Enter stage right, most people’s spouses, relatives, or friends, you would think, and therefore the myth has grown up that you can’t have an advocate under the Care Act if you have got someone else to speak up.

That is not the law however. There are extra caveats. The person is not allowed to count as appropriate to support you informally, IF they are involved in your care or treatment (not your support, please note) for money. So a person whose relative is paid out of their direct payment to do some of the meeting of needs is not allowed to be an informal supporter, because they are excluded, however wonderful they are.

Secondly, even if your relative is keen to do this informal role, and not inappropriate for any obvious reason, and all set to do it, there is one further crucial aspect that is often overlooked, and which makes the myth a myth. It is this: the person who would qualify for an independent funded advocate, were it not for their informal supporter being all set to go, must be asked for their consent to the specific person taking on that role. So the service user, with substantial difficulty in engaging, is still entitled to say ‘I don’t want my Dad doing the talking or being there’. They don’t have to give reasons, and acquiescence is not enough.

In all cases where consent is not given by the person to be assisted with the statutory processes,  the council still has to appoint an independent funded advocate for that person. The point is that not only may that be less uncomfortable for the person, but also the advocate may KNOW a lot more than a person’s relative about how the Care Act works, and what is conceivably able to be fought for, and what must be given up, as impracticable or unaffordable, by any reasonable standards.

What if the person lacks capacity, though, you might well say, even to give consent. That is covered in the regulations, the reference to it then being a question of best interests, to be decided by the council, if the person wanting to be the informal supporter is not otherwise inappropriate. The lower any level of apparent objection or discomfort on the part of the person there is, the more likely it is that the willing person will be given the informal support role, unless there is some other concern about that other person’s good faith or ability to support engagement without taking over or hijacking the person’s assessment.

There is a further situation when one is still entitled – even forced to have an advocate even though one’s informal supporter is ready to undertake the role, and hasn’t SO upset the council already that they’ve declared the supporter to be beyond the pale as too disruptive or whatever.

It is this exception to the exception to advocacy rights: where

4(3)      

         (a) there is disagreement on a material issue between the local authority and the person referred to in section 67(5) [ie the informal supporter] … in the case of the individual;

and

b) the local authority and that person agree that making arrangements under section 67(2) of the Act in relation to the individual would be in the best interests of that individual.

We would be hard pushed to think of a situation where either the council or the relative could conceivably NOT agree that that would be a good thing to do, in all honesty, but in real life we know that this happens. If we were relatives with a lot of anxiety, we would WANT advocates if they were at least competent advocates, but people don’t necessarily see it that way.

If the council wants to appoint, but the relative doesn’t want to give way, then on paper the council does not HAVE to appointe, but there is nothing to stop it. The risk for the entrenched parent here is that he or she will be politely told that they are not going to be seen as the informal supporter and neither as the person’s best interests consultee under the MCA, and in both cases, what does the parent or other relative intend to do about that then? Very few will want to spend the money on challenging that decision and by the time a complaint is made, rejected and considered by the Ombdudsman, time will have marched on and more serious decisions likely made!

So these are the situations where having a relative willing to speak for you does not take away your right to an advocate.

It makes it clear that being a person’s next of kin, isn’t enough for the role of informal supporter, let alone formal advocate, but in a good way, we think, overall.

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“If you go to live in one of the tenancies we can secure for you, you have to abide by house rules…”

….about friends coming back for the night – for instance.

Does that sound like ‘living in your own home’?

This, we think, is best described as a legal myth, but it is not a myth in practical terms, for young people with learning disabilities.  

What we mean by that is that whilst there’s probably no legal basis for requiring consent to that sort of a rule, and the imposition of it could be enough to make CQC interested in whether the care was being provided all bound up with the accommodation arrangement, the only way of accessing supported living, at least supported living as the sector thinks of it – where accommodation is only ever occupied by people with disabilities that are compatible – may well be by agreement to it, by oneself or someone else.

Let’s focus legally for a moment: where would these rules be coming from?

The only way people can regulate the use of a person’s room is through a contract. A licence, or a tenancy.

So if your parents let you live in the house after you are 18, you are there on a licence, either paying a licence fee or not – but it’s their house, and they are in charge of it. You have resident landlords if you want to be formal about it, but the most protection you have is 28 days notice. That’s housing law. Even if it’s not written down, house rules like that would be up to the house owner, and be part and parcel of the accommodation arrangement.

Likewise, people who live together might agree among themselves, informally, how to regulate the use of the space for comfortable co-existence, but we doubt that this is what happens in practice, in supported living.

If a person is living in a shared lives household or a  house in multiple occupation, they might have a formal and paid for licence, or they might have a tenancy – and the same would be the case in most supported living settings.

If the accommodation in question was self contained, you would never find such a term in a tenancy, in our experience.

An ordinary landlord even of premises let to co-tenants (a bedroom each and shared use of the rest of the house) would be anxious to prohibit parting with possession or sub-letting, but it would be very unusual for a LANDLORD to try to regulate the sharing of a bed or a bedroom on an occasional basis.

If someone is faced with a document related to their occupation rights, with that sort of a term in it, freely agrees though, then they’ve agreed. No getting away from that. That’s the law of contract.

The impression is given by the above sort of a conversation that it’s the landlord who’s making it a condition. So, we can see that if you really want to move out of your parents’ home, or if you are really keen to NOT go back there, after residential college, this would not seem so very odd or so very serious to most such young people – the pros would outweigh the cons, perhaps.

But has the person freely agreed?

If you find this sort of a requirement in a licence or a tenancy – say in a shared house, (this could still be a tenancy of one room plus shared use of the rest) or a place that’s more like bedrooms off of a communal set of living rooms and a kitchen, (this is more likely to be a licence) you need to check what this is really all about.

The landlord may have been prevailed upon by someone else, to include some rather out of the ordinary rule in the agreement, about use of the room….and our concern would be that that may affect the registration status of the accommodation, because the law requires that tenure and care arrangements must not be mixed up and interdependent or one integral to the other.

Why would someone prevail upon a landlord to do such a thing?

It would probably be something to do with concerns about strangers in the house.

That might seem like a perfectly proper concern on the part of the local authority, given that it knows that all sorts of other equally or even more vulnerable adults may be moving into in the same household.

However, when one moves into a house share, in ordinary life, risk from other co-tenants’ associates is not something that one thinks about, or could lay at the feet of anyone else.

And the local authority, ironically, does not owe a duty of care with regard to who else is sharing – the local authority is merely providing care services to each person, living in their own individual homes. There is no duty even of disclosure on the local authority or even any right to disclose the person’s characteristics, condition or care needs to the landlord or to other co-tenants, not without consent, at least, or otherwise in a person’s best interests.

Since nobody would deny that there is a risk however, perhaps the real point is that there needs to be some supervision or support at night in case things get out of hand – with respect to anyone’s capacitated consent to whatever is happening, and THAT is what there is no money for, these days, or only enough for a sleep in member of staff, who doesn’t much fancy trying to stop people having SEX – so having a visitor for the night is what is then presented as ‘forbidden by house rules’, and why.

If the care provider or the local authority is saying ‘you can only go to this tenancy IF YOU AGREE TO THIS THIS AND THIS and THIS relates to personal matters, the chances are that the landlord is not imposing the rule at all – and these others – the council, CCG or care provider, have no source of POWER to make those requirements, in most cases we can think of.

The bottom line therefore seems to be that if you want to BE in supported living, you have some choices to make, for which the council is not responsible, (but it is, really, for all practical purposes, because it controls access to the properties through nomination rights…)

If you have capacity to make them, understanding that they are not the same kind of choices that you would be asked to make in ‘ordinary’ accommodation, but you also understand that you would find it very hard to GET a tenancy of ordinary accommodation offered, then maybe we are approaching the reality of the situation: the lettings world has not caught up with disability discrimination principles, and neither have individual landlords. But instead of flagging that up and encouraging people into ordinary tenancies, councils aren’t in a position to support people to live in genuinely independent living, because the savings from shared care are the only way to make meeting extensive but unpredictable needs possible – so that taking all that into account, one might well decide to take up what one was offered, on less than ideal terms.

However, if you lack capacity to make the decision to sign a tenancy and there’s someone else with power to do so, like a deputy, under CoP supervision, then that person must act in the best interests of the person and take their wishes and feelings into account. A parent or other relative may be delighted that these house rules exist in the form that they do, and not think about them from the perspective of a person who’s got a relationship going on with a partner – for personal or cultural reasons that aren’t abusive, necessarily, but just part of the mindset of having cared very much for a person with learning disabilities for the whole of their childhood and adolescence, going unchallenged.

In that situation, CASCAIDr does not know how any local authority, acting under the Care Act, could ever ‘meet needs’ even by facilitating access to accommodation through a tenancy, where that sort of imposition on personal freedom was in play, whilst purporting to promote well-being.

Either the person has got capacity to have sex, or not.

If the person has got sufficient capacity, it’s forcing them to have sex other than where their home is, as the price of getting into desirable accommodation – which has already been outlawed by the Court of Protection in a famous case, where the judge said that the council could not toll the bell of resources in relation to a care arrangement that denied the woman her basic human rights.

If the person has not got that much capacity we would be querying how much capacity he or she has understand the house rules in the first place, and the question of where these rules ‘lurk’ – and what the person’s other options really are. Which is why we would come back to the question covered elsewhere, ‘Is it lawful for the council to insist that I live in shared care, before it will meet my needs at all?’ to which the answer is no, in our view.

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