Supported housing gives people real choices about how they live, no matter how much support they need. Deafblind people themselves sing its praises, and so do their families. Staff get very excited about it, and even funders are pretty enthusiastic. What exactly does it involve? SJ Butler investigates.

We’re a tiny bit late when we arrive at Barley Close near Ipswich. Mandy Clarke is hanging over the railings, impatient for us to come up to her flat and get going. She’s an excellent host, she brings me a chair, and is delighted when I accept a cup of tea. She’s proud to show me her flat and absolutely clear about why she chose to move to this cluster of supported living flats: above all else, she wanted her own front door.

For Mandy, supported living means privacy, and the freedom to live her life in the way she chooses. She’s extremely independent, and does all her own shopping, cooking and cleaning. She eats when she wants to. She catches a bus to the shops whenever she pleases. She does her own banking, and pays her own bills.

A few miles away, I visit Michael’s home, which he shares with several other deafblind people. He has almost no mobility, and is totally deafblind. It’s difficult to know how much he understands because his options for communication are limited. He’ll never be as independent as Mandy, but he too lives in supported housing.

Supported living services come in all shapes and sizes. They’re for people who can live with almost no support, and for people who need someone there 24 hours a day. Supported living offers people more choice, choice about where to live, who to live with, and who to provide your support. It’s also about responsibility for making the right choice, for looking after the people around you, for looking after yourself.

For Michael, supported living means that the way he lives is dictated by his needs and preferences. The same would apply if he was living in a Sense residential service, but there are key differences. Michael is a tenant in his own name, with all the housing rights and responsibilities that entails. And the same goes for each of the people who share his house. In fact, people who use a supported living service always own or rent their home. They don’t live in a property owned by the care provider. As a result, they would be able to change their service provider and choose another, without risk of losing their home, if their current care provider was not doing a good job.

In supported living, responsibility for the accommodation in which people live rests with them and / or their landlord. This is reflected in the way in which supported living services are regulated and inspected by the Care Quality Commission (CQC). CQC regulates and inspects the provision of care and support, but not the accommodation. One consequence is that, whereas CQC inspectors and local authority staff have the right to enter a residential service at any time if they are concerned about things, they don’t have that right with a supported living service – they can only go in with the permission of the person whose home it is, again reflecting the increased responsibility of the individual. While Northern Ireland and Wales have different care regulators, similar differences in the regulation of supported living compared to residential services would still apply in those countries as in England.

Sense provides supported living services to people who rent from their local council, from housing associations, from social landlords, and from their parents. Some people live alone, some share a house. And in the purpose-built supported housing at Barley Close in Stowupland, seven tenants each rent a flat from a housing association, and are supported by Sense staff based in the eighth flat in the block. Staff here provide tenants with support varying from seven hours a week to 24 hours a day, and especially for those on low hours of support, a constant presence.

There are as many ways of setting up a supported living service as there are people wanting to use one, it seems.Though the services are varied, like the people who use them, it’s clear that however it’s set up, a good supported living service can make a huge difference to someone’s life.

Mandy, for example, used to live in a residential group home. Though she had her own room and bathroom, she didn’t have her own front door and she hated this. She also had very little real responsibility. All her bills were paid for her, she simply received a small allowance, pocket money effectively, each month. It was a huge step therefore when she moved into her own flat and started receiving benefits to cover her rent and all her living expenses, so she went shopping and when her next rent payment was due, she’d spent it all.

For some people that would be the perfect example of why Mandy should stay in a residential service. But the staff who support Mandy worked with her over the months, helping her to understand the consequences of not paying her bills, and to learn how to manage her money. Now, she budgets effectively, never pays a bill late, and has a savings account from which she paid for a holiday to Spain this summer.

I asked Mandy where she does her shopping, and her answer shows how keenly aware she is of the limitations of her budget:

‘I shop at Tesco, it’s very near. The bus takes about five minutes. I don’t go to Asda because it’s a little bit further and because there’s a lot to carry I’d have to get a taxi, which costs more.’

Mandy found out the hard way that money only goes so far. Far from showing that some people will never live independently, she proves that being allowed to take a risk – with the right support – is the way that we all learn.

Tenants have seized the opportunities that supported housing has given them, and live far more independent lives than would have been thought possible in the past. There’s risk, of course – things can go wrong – but the role of supported living service providers is to enable people to take risks, to learn and to move on, just as every other adult does.

It’s sometimes hard for social services – and families – to recognise that being deafblind doesn’t mean that someone can’t be independent, especially when the person also has complex health needs. Surely, they say, someone with limited vision and hearing, and perhaps a learning difficulty, is safer in residential care? Surely people like Mandy are the exception?

Well, of course Mandy is unique, and that’s the point: each supported living service is tailor-made. It’s designed to give each person the maximum amount of independence possible, and as many opportunities to learn and to develop – and to do the things they love, just like any other adult.

Mandy adores Land Rovers – her flat is covered in pictures of them and she spent her holiday trekking in them with other Land Rover fanatics. In Michael’s house, one of the tenants is a keen drummer, and plays sessions for local bands. One of Mandy’s neighbours runs his own business chopping and selling kindling. In Exeter, a young man who’s just moved into supported housing volunteers in a café nearby. Julie has almost no mobility, and limited communication, but she adores water. Her family and staff – her circle of care – have together planned a new bathroom with her so that she can splash to her heart’s delight. They’re all following their passions.

Supported living can sound perfect, but it’s not, of course. Just like everyone else, deafblind people choosing supported housing have to learn to be pragmatic.

They may want to live in a Georgian townhouse near the cathedral, but they’ll probably find that they can only afford a flat in a cheaper part of town. They need to weigh up the benefits of living alone – perhaps with 24 hour support – against the possible isolation it can bring. Or if they decide that sharing a house – and a supported living service - is more affordable, how will they find suitable co-tenants? The chances are that they’ll have to compromise somewhere along the lines.

It’s not an easy solution for service providers either. Balancing risk and safety is one of the biggest challenges for staff. It’s their job to weigh up their duty of care and the rights of each individual to make their own decisions. They work as a team, they use their knowledge of the individual, and together they decide just where the boundary of their duty of care lies. It’s a balancing act, but one that they relish.

Families can understandably find it hard to allow someone whom they’ve protected all their life to begin to take responsibility, and to take risks. They can wonder just what their new role is – and it can be complicated – but in essence, as Sylvia Welford, who manages community services in Cambridgeshire says, it’s very simple: ‘Your rights as a parent go on forever. We support them. You love them unconditionally and that’s never going to change. And we’re here to support parents as well. We do understand that you are still the most important person in that individual’s life.’

In Sheffield, Karl Shore is working with a young man and his family to establish a home for him once he leaves school. In this case, the parents’ role could be considerable: they may become landlords, renting to their son and other young people looking for supported housing. As Karl says, ‘In supported housing, we’re coming across situations all the time where we’re having to find out what’s possible. There are new ways of working and we don’t know precedents for this way of doing things. But we’re exploring all these things with interest. There’s the potential for great creativity.’

There are many variables: where would the young man like to live? What kind of housing does he need? What can he afford? Who else is looking for a similar set-up? Does the young man like them? What support does he need? Are the tenants’ needs compatible? Who will provide support? What funding can he use? As Karl observes, ‘These processes will take a long time because we need to consult widely so that we don’t build a problem in for later down the line.’

Setting up a new service is a huge challenge, for staff and families. Running a supported living service involves a heady mix of idealism, pragmatism and adaptability. And for the person at the centre of the service, learning to be independent and to take responsibility isn’t easy either.

Despite this, supported living really does offer deafblind people a great opportunity to seize hold of their lives. Lorraine Cornwall, service manager in Stowupland says:

‘There should be more projects like it because it’s so focussed on the individual. It has been a learning curve for everybody. It’s been brilliant and it’s been a challenge for the tenants, the staff, for me, for everybody, because we’ve been faced with so many things you just couldn’t have pre-empted at all.’

The REACH Standards in Supported Living

While there is no official definition of supported living, the REACH principles are widely accepted:

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.
Paradigm, REACH: Standards in Supported Living, 2003

Financing supported housing

Many people living in supported housing need help with funding. 

Care and support is paid for by social services and / or health funding, increasingly in the form of a personal budget. Housing and everyday living costs are paid for by the welfare benefit system, provided of course that people are eligible for those benefits. This compares to what happens in a residential service, when one single weekly fee pays for both accommodation, daily living and care support costs.

Of course, the level of funding people receive for care and support depends on their assessment, and their benefits on their eligibility to receive them. There’s considerable local variation in the funding allocated.
Some people also receive Supporting People grants or money from the Independent Living Fund.

Life story: House in Exeter

In Exeter this summer, three young men - Mark, Ryan and James moved into supported housing. All three had attended the Exeter Royal Deaf Academy, where they’d been preparing for this transition.

While they’d done a lot of work in readiness for leaving school, there were still some surprises, says Rachael Robb, who manages their supported living service: ‘In our first week, they were asking permission to do things, and we had to reinforce that it’s their home and they’re very knowledgeable now that it’s their home. It’s given them a lot of confidence and really boosted their independence skills.’

The three tenants knew each other well before moving in, and together they interviewed their staff. They’ve also interviewed a new tenant who moves in shortly, and have been helping him to settle in over weekend visits.
When it came to signing tenancy agreements, they knew what they were agreeing to as staff prepared versions using pictorial language, widget and BSL for them to read alongside the legal documents.

Though Mark, Ryan and James have only been in their new home for a matter of months, Rachael can already see the difference in them:

‘Their personalities are developing, they’ve become a lot more articulate and they’re making a lot of choices that perhaps they didn’t make before. They’re having a lot more input and say in their lives.’

Sources:

Supported Living: Making the Move, NDTi, September 2010

The impact of the Supporting People programme on adults with learning disabilities, Joseph Rowntree Foundation, August 2007