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?!