A stupid question (about supported living)

I’ve got a stupid question, which you may be able to answer.  Chris Hatton and I were tweeting about supported living on Twitter. I was saying that when I worked in care services a care agency that I worked for explained that the difference between supported living and a care home, was that when you worked in supported living you shouldn’t do the washing up and you had to buy your own lunch (whereas in a care home, you got given lunch, and staff did the washing up).  This totally bizarre definition of supported living baffled me at the time, and so when I started studying law I wanted to know more about what the difference between supported living and a care home was.  Little did I know what a huge can of worms I was opening up…

What is supported living, and where did it come from?

‘Supported living’ was developed in the 1990s to enable people with learning disabilities to enjoy rights to live in their own homes, with support.  The early supported living movement took inspiration from the Canadian community living movement, and a touchstone of the philosophy of supported living was the Reach Standards, developed by Paradigm UK.  These aren’t regulatory standards, but they have been cited by regulators in the past.  The Reach Standards are:

  • I choose who I live with
  • I choose where I live
  • I have my own home
  • I choose how I am supported
  • I choose who supports me
  • I get good support
  • I choose my friends and relationships
  • I choose how to be healthy and safe
  • I choose how to take part in my community
  • I have the same rights and responsibilities as other citizens
  • I get help to make changes in my life

Just to make a self-evident point – these standards are absolutely not about living in a particular place or type of accommodation, they are fundamentally about choice, and they are fundamentally not about living with as little support as possible, but about living with the right support and having control over that support.

The Reach Standards are very similar to the concept of independent living as it was developed by the disabled people’s movement, which again is about choice and control (and not, as some policymakers seem to think, about living with minimal support or learning “independent living skills”).  This is now enshrined in Article 19 of the UN Convention on the Rights of Persons with Disabilities, which says:

States Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:

a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;

b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;

c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.

Once again, just to bang on about this one more time, this right is about choice, not a particular kind of accommodation or ‘independent living skills’ or living alone or without support.  It’s about disabled people having the same choices as non-disabled people about where you live and who you live with, and having access to the services you need to enable you to live there and be included in the community.  It’s a right that has at its core a desire to tackle institutionalisation and the segregation and isolation of disabled people.

The key point here is that any kind of accommodation could be ‘supported living’ or ‘independent living’ provided the person has chosen where they live and who they live with (on an equal basis with others).  If I developed care needs tomorrow, my current home could be ‘independent living’ accommodation provided I got the right support to continue to live in it and be included in the community.  If I chose to live with my parents, the same would be true.  If they left me their house, and I wanted to move in to it, that then could be ‘independent’ or ‘supported’ living.  If I chose to live with a group of my mates (as I have done in the past), then the same would be true.  If I ran off with a lover, I wanted to live with them, then that, too, could be supported living (I do not plan to, I should be clear).  You probably get the point now.  It’s not about living anywhere – I couldn’t choose to live in the Ritz, for example (although I could if I had bags of money or were Maggie T).  It’s just about having equal choices and the support and services needed to make that a reality.

The regulatory status of supported living

In regulatory terms, supported living is a home care service provided to a person in their own home.  The person might own that home, or have a tenancy.  This means that the Care Quality Commission regulates it differently to residential care.  It also entitles people to housing benefit to pay for their accommodation (unlike in a care home) and people come under different charging arrangements under community care law (in short – local authorities are obliged to charge for care homes, and the charges are mean, but the charges for home care are discretionary and less mean).  Historically, but it’s less true now, there were sources of funding like the Independent Living Fund that could only be accessed by people living in their own homes.  This mean that for service users, local authorities and providers alike, there were economic (and regulatory) attractions to supported living services, which were separate from their ideology.

In a great paper, that I can no longer find online, Peter Kinsella – one of the architects of the Reach Standards and supported living – complained that these lucrative and regulatory attractions meant that some providers had moved into the sector who just didn’t get the philosophy behind independent living.  He said:

“In the very early 1990’s, it was a battle to get Supported Living adopted. Those involved were people who were very focused on the rights of people with learning difficulties to lead the lives that they want. Often, they fought against the odds: people did not believe it was possible, that it was affordable or that it was desirable. Then Supporting People came along with a dual opportunity to bring in substantial additional funding and escape the clutches of registration, and a whole new group of professionals started to embrace the idea of Supported Living.

“However, this was too often translated crudely into ‘give people a tenancy, deregister and get Supporting People funding in’. Suddenly, those organisations and people who showed no inclination towards Supported Living couldn’t get enough of it.

“Striking parallels can be drawn to Mars’ strategy in the 1980’s when they relabelled much of their confectionery to create ‘global brands’ recognised the world over. Marathon bars become Snickers, Opal Fruits became Starburst. The product stayed the same, but the wrapper changed. Too much of what goes today as Supported Living is relabelled Residential Care. “

This started to lead to legal problems, because once the choice and control element of supported living got diluted, regulators and courts started asking uncomfortable questions like ‘is this actually really just an illegal and unregistered care home’ if people had no real choice over their care provider (Alternative Futures)?  Or – how can this person have a real tenancy if they can’t exercise any control over who comes in and out of their property (G v E)?  I don’t really want to get into the ins and outs of this, except to observe in passing that the Mental Capacity Act 2005 presents numerous dilemmas from a regulatory and ideological perspective for independent living, as it potentially calls into questions important issues like the validity of tenancies (e.g. Wychavon 1; although Wychavon 2 provided a solution of sorts) and also about meaningful choices over care providers, and so on.

I don’t think it’s necessarily true that a person who ‘lacks capacity’ can’t enjoy rights to independent living, because there’s nothing to stop people respecting expressions of choice about where a person lives.  However, when I see cases under the MCA about forcing people to live in so-called independent living services against their will, to make them more ‘independent’ (as in, to make their lives mirror those of ‘normal’ grown ups who leave the family home, or to make them learn ‘independent living’ skills) I think to myself: we’re well into Snickers and Opal Fruit territory here.

My stupid question

So. Back to my stupid question.  As I said at the outset, independent living is about choice and about having choices equal to others about where and with whom one lives, and receiving the necessary support to live where one chooses and to be included in the community.  As I pointed out at the start, this could be a person’s existing home, it could be their family home, it could be a nice house, within their budget, that they’ve found that they want to share with their mates.

One of the elements of the Care Act 2014 that is supposed to help foster choice and control (which we are told is a key element of the well-being principle) is s30 – which allows people to express a preference to live in the accommodation of their choice.  Provided the costs are within their ‘personal budget’ (defined as the cost to the local authority of meeting the person’s needs – see s26), or the person can top up the difference, and the authority agrees it will meet their assessed eligible needs, then the local authority has to provide/arrange that accommodation.  This is potentially a really powerful mechanism, and it’s a lot less woolly than the choice and control that you could exercise in respect of other aspects of personal budgets where it’s not clear (in the statute at least) to what extent you can insist upon preferred providers (unless by way of a direct payment).

The ‘choice of accommodation’ regulations set out precisely what kinds of accommodation people can choose between, and they include residential care, shared lives and supported living accommodation.  The regulations go on to define supported living, and here is what they say:

(1) For the purposes of these Regulations, “supported living accommodation” means—

(a)accommodation in premises which are specifically designed or adapted for occupation by adults with needs for care and support to enable them to live as independently as possible; and

(b)accommodation which is provided—

(i)in premises which are intended for occupation by adults with needs for care and support (whether or not the premises are specifically designed or adapted for that purpose), and

(ii)in circumstances in which personal care is available if required.

(2) The accommodation referred to in paragraph (1)(a) does not include adapted premises where the adult had occupied those premises as their home before the adaptations were made.

(3) For the purposes of paragraph (1)(b)(ii) personal care may be provided by a person other than the person who provides the accommodation.

Right, let’s break this down.  Firstly, why must supported living accommodation be ‘specifically designed or adapted for occupation by adults with needs for care and support’?  Not all disabled people need physical adaptations to accommodation; many with learning disabilities and mental health problems – who are one of the key users for supported living – don’t.  So what does this mean?  To me, it sounds creepily like ‘accommodation that is intended for occupation by people with needs for care and support’.  It sounds creepily like the opposite of ‘ordinary homes, on ordinary streets’ and sounds like purpose built accommodation that is separate from the main housing stock.  This isn’t a problem if people want or need specially adapted housing, but why must they live in specially adapted housing, to benefit from the choice of accommodation regulations?

Check out also part 2 – supported living apparently ‘does not include adapted premises where the adult had occupied those premises as their home before the adaptations were made.’  So if I develop care needs tomorrow, and we adapt my lovely Bristol flat where I live with my husband and my cat and I know all my neighbours and the local shopkeepers and I am well and truly embedded in the community and where I want to be… my ‘choice of accommodation’ does not extend to my own home. I have to move into some other specially adapted accommodation.  Of course, I might argue for my personal budget to be spent on home care in my existing home, but my point is – why isn’t this a hard edged legal right, to choose to remain in my own home?  Why don’t the regulations protect the choice to live in my existing home?  Money can’t be the reason, as the regulations are already couched in terms of the personal budget, and for the same reason neither can meeting care needs be the reason.

These two provisions simply defy the very point of supported living – which was that it could be any place that the person chose, and it would be their ‘home’ in the community they identified with.

And finally, the third provision, that personal care ‘may’ be provided by a person other than those providing the accommodation.  Ummm…. call me stupid, but isn’t the whole blinking point, the whole issue underlying the Alternative Futures case, that the care provider and the accommodation provider must not be part of the same ‘establishment’?  That they must be properly separated?  If the regulations said that the care may be provided by the same person as the accommodation provider, that would be ideologically problematic but it would make legal sense, as the legal situation in Alternative Futures is that they must be different.  But for the regulations to say that they may be different is just bizarre, because the law already says they must be; it gives them permission to do what the law says they must, and meanwhile implies that perhaps they don’t actually have to follow Alternative Futures.  And also, where is the ‘choice of care provider’ element here – given that this is 50% of the supported living equation?

So my question, simply put, is this: why, under the choice of accommodation regulations, can I not choose to live and be ‘supported’ in my own home?  And my subsidiary question is: has anybody who drafted these dratted regulations ever read anything about supported or independent living?!


16 thoughts on “A stupid question (about supported living)

  1. Pingback: A stupid question (about supported living) | acarercornwall999

  2. I do see your point and agree with you. Have you looked into Direct Payments. Direct payments are available to give the person more control over their life and to engage a Personal Assistant(s) of their choice. However, they can’t employ a family member who lives with them unless it is special circumstances.

    Sounds good, but some local authorities are trying to take control of people and their direct payment by trying to say they should be with their “own kind”, Meaning they should go to hubs which are set-up for people with a learning disability. Where is the choice if some local authorities are trying to encourage the use of hubs and set activities. If a person does not want to go to such places and would prefer to be fully involved in meeting people in their community and wider community one would think all local authorities would be pleased.

    If a family resist placing their relative in a hub some local authorities try to make a case in order to take control of the direct payments so they themselves can commission the service. Many people with a disability still have to fight for respect and to live their life the way they want and be who they are.

  3. As usual, Lucy Series has her finger on the pulse and presents a perfectly cogent and loigical question. I too have a gripe (only one??) about so called supported living and so called “choice”. The only supported living I have come across is specifically for people with a learning disability and takes place in specific accommodation with specific providers. As a asafeguarding social worker, time and again, I come across situations where people with a learning disability, in supported living accommodation, have had no choice regarding the care provider and, worse still, no choice regarding who they live with. It seems if there is a void in the accommodation it is filled with the next person on the list irrespective of whether they will get on with the existing tenants. This has led in many cases to, at best, diagreements between the tenants (who doesn’t diosagree at times – even with the person we have chosen to live with!) and, at worst, outright fighting or intimidation and bullying between tenants, leaving the victims traumatised, cowed and fearful – IN THEIR OWN HOME which should be their haven. The rest of us would not put up with this state of affairs but it seems that it is OK for vulnerable people because they are reluctant or unable to voice their objections and if they do then what is the alternative; move out? have the perpetrator move out? It depresses me in these “enlightened” times when vulnerable people have been moved from long stay institutions to a situation where it may be more homely but often it doesn’t much feel like home as we know it.

    • Very well stated! I currently work for a supportive living company in Napa County and despise the company but love the clients. For years I have spoken on their behalf, most are non verbal. The management team that does dictate what staff works with who, never ever attempts to seek the perfect fit. Even with viable signs of clients not liking certain staff or certain staff not being supportive of their needs, the managers refuse to address it. Even if other support staff speak up. Here the only requirement to be employed is to pass a background check. We work with people on drugs, managers peddling drugs, managers having sexual relationships with staff. The list goes on and on. It’s family owned and managed, from payroll, HR and case managers. Leaves staff nobody to go to comfortably without fear of recourse. The staff that complain find themselves without hours and eventually a job. There is many labor laws being violated as well. Staff only discuss’ these things amongst themselves and pray for someone to step up and file a class action suit. I the end, out clients suffer, state funds all of the cost, employees are abused and family gets richer. Fraud on so many levels but will never be investigated because of the lack of government resources to do so. There are currently 5 people claiming they are going to report things to various entities, I have yet to see the bee hive stir…..

  4. 1. I like most folk think that supported living is living in a home of your choice with support to enable you to live there. Both my own son (who does not have LD) and A’s son (who does have LD) follow that model. In my case the flat is a private rented flat (which I own). In A’s case it house rented from a social landlord as her son needs 24/7 care and sleeping accommodation for one or more carers. She is looking to buy the house using her sons structured settlement but nobody has suggested that he has move anywhere else. Buying the flat for my son has had huge advantages in terms of ensuring that he has high quality accommodation. The rent does not cover the total cost of the mortgage, service charge, repairs etc but that is a small price to pay. I appreciate that not everybody can afford to do this.
    2. The anomalous regulations you have highlighted seem to relate to accommodation that the LA is providing – is this why they are written the way they are? How would an LA go about choosing private rented accommodation?
    3. Your reservations are spot on. My son’s 1 bed flat is absolutely standard except that he has a bath seat that lowers to enable him to get in/out of the bath.
    4. One issue that particularly affects the LD sector is that of shared accommodation. LA’s are quite happy to magically adjust peoples care packages so that two or three people have to share a house AND the care that goes with it. Thus one person can only go out with support if they all go out because there is insufficient resource for them to act independently. The LA will threaten residential care if the alternative of individual support for individual accommodation is requested. I doubt if this interaction between individual care packages is legal but it most certainly goes on.
    5. Accommodation and care provision. I think the key to this is the tenancy agreement. If the tenancy agreement does not require the person to utilise the support provided by the landlord then I don’t think there is a problem. Indeed in some cases, it can be helpful in that there is no argument over who’s responsibility it is to solve a particular problem. However, the individual must be free to change care provision without giving up their home. The Supporting People programme has struggled with this issue as many SP providers have historically tied their support to the accommodation.

  5. As one if the original authors of Reach we saw a huge need all of those years ago to define true housing with support
    We need to stop thinking about specialist housing and making people with learning disabilities one of the the only groups of people who have to apply seperately for housing.
    Start with ordinary
    Start with what everyone else gets and wants
    Apply like everyone else
    Get help with that
    Force the help under the DDA
    Then see if it can be adapted to needs from planned new build on new housing developments or adapted from current
    Some properties don’t easily adapt so forget them,
    They are white elephants, don’t bother with something left or given
    It means no one else wants it either usually
    Developers like learning disabilities oh yes they do!
    They can get front organisations such as big
    housing assiciations to pay massive guaranteed lease charges because they can pile people in long term to share
    Warehousing and modern ways of going it
    Recent opening I went to
    ‘ …… To all the excited new tenants ….works with people no one else wants to be with’
    Imagine Barrats cutting the ribbon to their brand new starter home scheme saying that as PR
    Everyone clapped
    Dementia is big bucks these days too
    I wonder why?
    Many care providers have their same finance arms in the background providing the capital for the housing
    Essex recently showed how many big schemes they wanted to solve their future care crisis
    Not worried if Its the same company, the problem just has to be solved
    Why do people with learning disabilities have their housing sorted out by a social worker? Why does everyone else, unless, you have some very dire needs, get sorted by a housing person? I think you will find this is the root of the problem
    Special people needing special solutions with the greed of the provider licking their lips behind the deal!

  6. Hi there,

    I’m really sorry but I scanned your question before posting it and have just realised that you (inadvertently) identified an anonymous party in a Court of Protection ruling. I’m going to repost your response but without that bit.

    Lucy you are quite correct the decision in the Alternative Fitures/Moore case was there must be a split between the Care provider and the Landlord, and this is being ignored esp by the dept with social services responsibilites. This is dangerous grounds because as I Know you Know if you go back to the joint report of 2006 investigation into the provision of services for people with learning disabilities at Cornwall Partnership NHS Trust; those homes were ruled illegal care homes on that basis. There are now more homes in Cornwall where that division does not exist with the blessing of Cornwall Council who place people in them but insist they are on a personal budget so it is their choice.
    They also get family to sign the contract/tenancy agreement, another legal nicety scated around. The question of capacity is again covered by a token best interest meeting.
    As there is a total lack of choice re housing CC place where ever they want. Coice is a Fiction and the Reach standards a dangerous fantasy, dangerous because it raises expectations that can not or will not be delivered.
    The danger as we well know is the Steven Hoskin scenario he was murdered on the same day as the above report was published after being dumped in the community.

  7. Hi Lucy,

    this really is a can of worms but the question is far from stupid. There is a very considerable number of settings that are in a grey area between true supported living and residential care. Some of these were created for financial reasons (cynical or pragmatic) when uncapped Supporting People funds were available but many were created with good intent to promote small living units and high degrees of community participation etc. The Reach Standards were/are however often bent or stretched to their limits where services are occupied by people who by definition do not have full capacity to retain and weigh information and balance their rights and responsibilities in a nuanced way. The promotion of direct payments has further compounded this confusion where the budget holder does not have full capacity to make balanced financial compromises.

    The DoLS regime is very clear and highlights the contradiction between someone making their own choices and needing decisions made by others in their best interests. The logic is that anyone needing such constraints should be moved to a registered care home or have specific CoP approval for any restriction (even if below the deprivation threshold). Anecdotal “evidence” suggests blind eyes are often turned to significant breaches of the Reach principles.

    The legally neat and logical approach would be to re-register many (most for LD) supported living settings as residential care and restrict severely the use of “Personal Budgets” where the person to whom it is supposed to be personal cannot be the person making real and effective choices.

    The downside of legal neatness would be a loss of income to LA budgets (housing benefit for accommodation) and personal benefit income often far in excess of residential “pocket money”. Many individuals might be required to move “home” and possibly away from small community houses to larger buildings. Theoretically LAs should absorb the cost of resolving ambiguity but in the current austerity climate many are making decisions (often knowlingly) that are less that rational.

    My personal preference is for legal neatness but are we prepared to live with the consequences (some unpredictable) of pushing that agenda rigorously?

  8. Terry – not keen on your legal neatness – too convenient to tie in with the mess that is the MCA and DoLs! MCA and DoLs are a source of widespread abuse of human rights for people with and without capacity. Legal neatness appears to be an an alternative phrase for the type of imprisonment that most of us abhor!

  9. My immediate thoughts in relation to your not stupid question are this: it’s not just s30 which defines what people can and can’t choose. S30 (annex a in the guidance is helpful see below) relates specifically to people whose needs have already been assessed (with their involvement) as only or best being met in a care home or supported living scheme as defined by your blog. Ie, It is designed to ensure that for those people specifically, their rights to choice are not overtaken by the need for accommodation based support. Traditionally, people who have to “move into care” wave goodbye to any choice and control.

    This means that for the majority of people, the least restrictive, least invasive options must be looked at first, as per the care planning and assessment sections of the act.

    When you look at s30 alone, it seems as if their misunderstanding of what s/l is could be catastrophic in terms of not keeping people at home. But in the context of the rest of the act, it actually ensures choice is a duty that still has to be discharged, therefore keeping choice open to folk. whilst the ballsed up definition of S/L is headdeskingly annoying, it is only in relation to needing a concrete definition of having a duty to acquiesce to personal choice in the context of accom based support and so I don’t see that it will be a problem in practice, however frustrating the definition is.

    PS I appreciate this may come across as a hopeful and optimistic view of the act, and that in practice, implementation is likely to be problematic and in places, dire. But I truly believe in the potential of the act to transform the sector 🙂

    Annex A guidance:

    1. A person’s ability to make an informed choice is a key element of the care and support
    system. This must extend to where the care and support planning process has determined
    that a person needs to live in a specific type of accommodation to meet their care and
    support needs.
    2. The care and support planning process will have determined what type of
    accommodation will best suit the person’s needs. This could be, for example, a care home,
    shared lives or extra care housing. Where the type of accommodation is one of those
    specified in regulations, the person will have a right to choose the particular provider or
    location, subject to certain conditions. Where this is the case, the following guidance should
    be applied and in doing so, local authorities should have regard to the following principles:
    • good communication of clear information and advice to ensure well informed decisions;
    • a consistent approach to ensure genuine choice;
    • clear and transparent arrangements for choice and any ‘top-up’ arrangements;
    • clear understanding of potential consequences should ‘top-up’ arrangements fail with
    clear exit strategies; and
    • the choice is suitable to the person’s needs.
    3. Local authorities must also remember that the regulations and guidance on choice of
    accommodation and additional costs apply equally to those entering care for the first time,
    those who have already been placed by a local authority, and those who have been self-
    funders, but because of diminishing resources are on the verge of needing local authority
    4. Local authorities should also be mindful of their duties under Section 1 of the Care Act
    2014 to promote individ

  10. PPS you shouldn’t need choice of accom rules to choose to stay in your own home because that should always be considered first in the planning process.

    Should. Not MUST.

    Ahhh. I’m seeing your point more clearly! So. What we need in addition is the LBBILL.

    I think your not stupid question has essentially presented the perfect legal argument for the need to have the new bill.

    Apologies it took my own ramblings to work that out!

  11. Pingback: The great supported living mystery | mwharvey's Blog

  12. Hi Lucy,

    I have not had the time to read through your piece yet – I was using the last few minutes of today’s online time to look at the DoLS Consultation, and got here by clicking on a link in it.

    But – my first impressions – is that the PS to the first draft of the e-mail I sent to you this morning, looks quite similar to what you wrote in part above (I think the e-mail I sent to you, had changed to a different PS).

    What I had ended the first draft of my e-mail with, was:

    PS There are some ‘legal contradictions’ I am entirely unfamiliar with described in the consultation, which makes reading parts of it quite hard work. But going back to my first thoughts about the section where you were quoted, my ‘gut feeling’ is that there is something odd about this:

    4.19 We are aware of some concerns over the legal definition of supported living in
    England. Regulations under the Care Act provide that supported living means:

    (1) accommodation in premises which are specifically designed or adapted for occupation by adults with needs for care and support to enable them to live as independently as possible; and

    (2) accommodation which is provided in premises which are intended for
    occupation by adults with needs for care and support (whether or not the premises are specifically designed or adapted for that purpose), and in circumstances in which personal care is available if required; however, this does not include adapted premises where the adult had occupied those premises as their home before the adaptations were made.26

    Surely the concept is that the person ‘is being supported [to live better and more independently than would be possible without support]’, so assuming that a person is living in a dwelling, I’m not clear why there is so much attention ‘on where the person is living’ ? Why doesn’t this [law or whatever] concentrate on whether a person has got some sort of legal right to be helped to live better, and on whose duty it is to provide the help, rather than on where the person is living ?

  13. My daughter has quite complex “learning” disabilities as a result of brain injury, and lacks capacity in very many areas of her life. She is, however, very very clear on where, and how, she wants to live. Basically, as close as she can get to a normal life in a normal house in the area where she grew up and feels safe and comfortable. She is also able to express her views on the kind of people she likes to have helping her.

    It can be quite hard work persuading those who have the power to decide on these things that this is the case, though.

    She has quite a few friends and acquaintances who live in more officially approved forms of “supported living” – where the stress seems to be on living where you are told, taking part in approved “activities” when you are told, under the guise of increased independence.

    Scares me to death.

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