Shared Lives finds foster families for adults who would otherwise face a bleak future in institutions. The Parkers have opened their home to three vulnerable men.
The Parker family lives in a large detached house down a narrow wooded lane in remote west Wales. In the front room a wood burner the size of a fridge glows through the night, providing hot water and heating for seven bedrooms, two sitting-rooms, Lorraine Parker’s swanky new kitchen and an extensive hall area which Steve Parker, who runs a garden maintenance business, is busy turning into a playroom for their children, Dani, nine, and Jake, six. But long before the rest of the household is awake, a solitary figure in sturdy outdoor trousers is already out in the garden, collecting wood. Roy, 65, has learning difficulties and a history of chronic alcoholism; his has not been an easy life, but to borrow a phrase from fostering and adoption, the Parkers are now Roy’s ‘forever family’. Ask him what he likes best about this situation and he says simply, ‘Freedom’. By which he means freedom to get up before dawn and potter downstairs to make a cup of tea. Freedom to take it out to his shed and puff contentedly on his first roll-up of the day, ‘coming to, nicely,’ as he puts it, while he gets the wood in. ‘I make sure the fire’s strong, before the children get up,’ he says, pulling an ancient woolly hat over his ears. ‘That’s my job, see. And I like doing it.’
The appropriate care of adults with learning difficulties and mental health problems is a thorny issue. They want what we all want: warmth, food, stability, love and a degree of independence. They don’t want to be stuck in residential care, but cannot live unsupported. The solution is obvious, yet peculiarly difficult to grasp. It takes a leap of faith to embrace the idea of taking in someone like this and making a commitment to care for them until the end of their lives, yet this is exactly what the Parkers have done. Through a little-known charity called Shared Lives, Lorraine and Steve also look after Randall, 74, who is deaf and without speech, and suffers from schizophrenia, and in December last year they gave a home to ‘the seventh member of our family’, Mark, a 44-year-old with bipolar disorder and learning difficulties.
Lorraine, a baby-faced 33-year-old, is both subtly demanding – ‘we’ll have that playroom finished in a couple of weeks, no bother, won’t we, Steve?’ –and astonishingly laidback. Jake was only six months old when Roy and Randall arrived in 2006; he has never known his family any other way. He shows me a shoebox he has decorated with a sticker for each member of his family: ‘There’s Mum, Dad, Dani, Roy, Randall, Mark… So many of us there’s not enough room on the lid,’ he squeals. In the mornings the children walk down the lane to breakfast club at school, leaving Lorraine pouring cereal into bowls for herself and ‘the boys’ while simultaneously getting vegetables ready for lunch. Randall, in pinstriped jacket and battered slippers, does not stray far from the fire, but Steve regularly takes Mark and Roy to work with him, cutting hedges and mowing lawns. ‘They love to be out and about, everyone knows them,’ he says.
This particular kind of community care can be traced back to the city of Geel in Belgium, where a system of foster family care for the mentally ill that began in the Middle Ages endures today – close to 500 psychiatric patients are still placed with local inhabitants. It surfaced in turn-of-the-century Brighton, in direct opposition to the asylums and institutions that proliferated after the 1913 Mental Deficiency Act. The first modern scheme, Boarding Out for the Elderly, was started by a social worker, Sue Newton MBE, in 1978; in 1992 Newton became the first chairman of the National Association of Adult Placement Schemes, now known as Shared Lives Plus.
Deb Winnicott, Shared Lives’ officer for west Wales, describes the scheme as ‘like fostering, but for adults. It can be short-term – we’ve placed people recovering from alcohol misuse who need a bit of protection en route to independence, and young people emerging from care as well as the elderly, who need a permanent, stable base.’ But compared with fostering, the scheme has had little publicity. The result is that many Shared Lives carers have worked in the care system or have connections with it. Steve’s parents, Chris and Lesley, ran a small residential home in the 1990s; Randall stayed there on a fortnight’s respite break in 1999 when he was 60, and never went home. In those days residential homes were rarely homely; whether you had three residents or 40, the rules and regulations were the same. ‘You had big, clanking fire doors separating family from residents, and health and safety posters everywhere,’ Steve grimaces. ‘And you were inspected constantly. However nice my parents tried to make it, it felt like an institution.’
When Chris and Leslie wanted to retire in 2006, they were worried about what would happen to Randall, who had by then been joined by Roy and an elderly woman, Joyce, who died in 2009. They felt it would have been unconscionable to throw them back into the system. Shared Lives was then in its infancy, but it provided a way for Steve and Lorraine to take on the three old people.
A report by the Care Quality Commission suggests there are about 10,000 adult placements in England. Of those, 4,463 are living as permanent members of families, the rest are short-term or respite placements. According to Community Care statistics, 76 per cent are aged 18-64 with a learning disability, seven per cent have mental health problems and five per cent have a physical disability.
Alex Fox, Shared Lives’ CEO, says that the sector has grown organically. ‘Shared Lives doesn’t have the budget fostering has, but numbers of adult placements are growing by two per cent a year, because people are slowly realising that it means happier lives for less money.’ It is cheap to run – it costs from £13,000 to £23,400 a year to place a vulnerable adult in a Shared Lives family compared with up to £260,000 for a place in a care home.
The light has certainly gone on for some local authorities – there are now 152 Shared Lives schemes – and people living in Shared Lives families benefit in every way; technically they are ‘tenants’, and as such are allowed to keep their benefits, whereas residents of a local authority home have a large proportion deducted to pay for their care. But coverage across Britain is patchy; schemes in Devon and Cornwall, Lincolnshire, Lancashire, Hampshire and west Wales are thriving, while in other areas it is a struggle to recruit and coordinate carers.
Spread around us on Lorraine’s breakfast bar are files and files of paperwork. It takes about nine months for a long-term placement agreement to be drawn up – it involves CRB and health checks and an ongoing series of assessments with a social worker. ‘I was very nervous during the application process,’ Lorraine admits. ‘Just about the scale of it all, because I knew once they came to us, there was no turning back. But it was a bit like knocking walls down in the house. Once you’ve made a big change you wonder why you worried so much.’
Roy proudly invites me into his beloved garden shed. There are four armchairs in varying states of disrepair and bags of Maltesers and bottles of fizzy drinks, carefully laid out in case of visitors. ‘I’m the luckiest man alive,’ he beams. Roy’s wife left him in 1974 to bring up two boys and two girls, under the age of six, alone. For years he was a functioning alcoholic. ‘I drank and drank. But you’d never have known, I hid it, see.’ Which is presumably how he managed to stay under the social services radar until he was admitted to hospital in 2003 with cirrhosis of the liver and given five weeks to live. ‘Skin and bone, I was,’ he says, shaking his head. His sons joined the forces at 16, and while he has not touched a drop of alcohol since he has been with the Parkers, he has had only sporadic contact – the odd birthday card. It is difficult to piece together exactly what happened; Roy says he doesn’t remember. ‘It all got on top of me, you know.’
Randall has been deaf since he was two: ‘Fall! Bang! Head!’ he signs, making a zipper motion across his mouth. Steve and Lorraine learnt British sign language (BSL), but there is a lot of gesticulation and hand-waving from Dani and Jake which he seems to understand just as well. Because of his deafness and schizophrenia (which is now controlled), he has been in the care system for 40 years. After his wife was killed in a car crash, his children were taken away and Randall went to live in a series of old people’s homes – hopelessly inappropriate, but social services seemed not to know what else to do with him. He never saw his children again and, with much of the paperwork lost, has no idea how he would begin to find them.
Shared Lives carers receive a slightly smaller allowance than foster carers, though the demands are greater because older people tend to be around the house all day, rather than out at school or college. The Parkers receive a flat rate of £51 per night for each person but rates vary across the country from £200 per week to £450 for people with challenging psychiatric conditions or complex needs.
The concept seems to chime so perfectly with David Cameron’s Big Society, I wonder why the scheme doesn’t have a higher take-up rate. Alex Fox admits it has a perception problem. ‘Our families are so integrated they stop thinking of what they’re doing as a “service”. But others refuse to believe it exists. I’ve heard lots of people say, “Who on earth would want to do that?” ‘
‘You wouldn’t do this for the money,’ Lorraine points out. ‘If you did, you’d want to knock off at 5pm, wouldn’t you? But this is 24/7.’ Steve drives Mark into Llanelli, the nearest town, several evenings a week for cinema club, and keeping up with three sets of health appointments is time-consuming and expensive.
Before he came to live with the Parkers, Mark had been moved ‘from pillar to post’. The youngest of five siblings, he was the result of a brief affair and never knew his father. He describes his childhood as ‘painful’ and ‘sad’. By the time he was a teenager he was sleeping rough, followed by miserable spells in a series of B&Bs, where he was exploited, ‘certainly financially and possibly physically’. The very first thing Steve did once Mark’s placement had been approved was to take him to see his mother’s grave, ‘because no one else had bothered’. ‘I got a bit worked up,’ Mark mumbles. ‘She was never very nice to me.’ Which turns out to be something of an understatement. ‘Very forgiving, Mark is,’ Steve says diplomatically. I ask Mark if he feels happy here and he nods vigorously. Do you remember feeling happy before? He stares for a long time at his slippered feet. ‘No,’ he says almost inaudibly. ‘No one has cared about me before.’
Lorraine and Steve grew up within miles of each other; Steve in Llannon and Lorraine in Pontyberem. Steve was her older sister’s best friend. ‘He was the sort of person who, if you said, “I’ve got to get a train to my nan’s in Essex”, Steve would say, “Oh, no bother, I’ll take you.” And he’d drive for four hours after a 12-hour shift at work, and back again – he’s that good-natured. My nan said, “Lorraine, you need to dump your boyfriend, he’s much nicer.” ‘ Mark clearly adores Steve. ‘If he needs reassurance, Steve’s got the right words,’ Lorraine says. ‘If he’s a bit low, Steve boosts him up.’ I’m beginning to think Steve might actually be a saint. When I ask Mark how he feels about him, his eyes well up and he says, ‘Steve’s my mum and my dad, all rolled into one.’
The boys are happy to be left on their own while Lorraine helps Steve with the business, but she is always back by lunchtime when she cooks ‘a proper meal’ – a casserole or a roast – at midday. Supper is homemade chicken soup, and if the children want pasta, which the boys don’t like, she will rustle up something different for them. They sit round the big table on special occasions, but on weeknights the boys prefer to eat in front of the TV. Lorraine does the bulk of the food shopping online (£350 per month) and spends a further £150-180 on meat and £200 with Mike, the fruit and veg man, who comes by once a week with his van. The majority of the domestic tasks fall to her. ‘It is demanding, but everyone has learnt they sometimes have to wait,’ she says. At weekends, it’s all ‘give and take’. ‘If the children are off to a party, the boys stay at home, but when they go motocross biking we’ll all go together because the boys love to watch.’
For their first family holiday abroad they rented a house in France. It was such a success they decided next time they would be bolder, so the whole family made a wish list. Dani and Jake wanted a swimming-pool, Randall wanted a cafe, Roy wanted to fly. They settled on Lanzarote and had a ‘whale of a time’. Do people stare? ‘They do,’ Lorraine says, ‘but we’re so happy, we’ve got blinkers on. We don’t care.’
Because Shared Lives tenants keep their benefits, they are able to pay their own way. Last summer Roy and Randall asked if they could buy their own caravan, which Steve now tows behind a five-berth motorhome. ‘I couldn’t see the point, but they said, “It’s important it’s ours.” It’s like a little house with their own front door and they love it.’
The Parkers are clearly blessed with both cast-iron patience and an unflagging sense of humour. Dotted around the house are pictures from a recent trip to London. They caught the train from Llanelli and went to Madame Tussauds and then on to the London Eye. Randall insisted on going by Tube, walking frame and all. ‘Up the escalators and down, people backing up behind us. Oh, it was a scream,’ Lorraine hoots. ‘We’ve got it all on video.’
Lorraine gets quite agitated when she thinks of the boys trying to settle anywhere else. ‘How can I explain this? If we won the lottery tomorrow, we’d all move to a bigger house together. We’re family.’ She talks about the Crachach (Welsh snobs) who give her funny looks but says their good friends accept the boys completely. ‘If we’re invited to a wedding, they come too – one of our friends had the service conducted in sign language so Randall could understand.’
By 3.30pm Dani and Jake are home from school; Dani, quiet, focused, is en route to netball practice, Jake is bouncing off the walls with mouthfuls of cake, showing Randall his DS game, which he can’t really see, but feigns interest anyway. Randall signs with his thumbs to say he’s happy, grinning, gurning, and farting at pantomime volume. Randall suffers from chronic lung disease and, unable to hear himself, also groans, wheezes and roars. Steve has bought him an electric cigarette which he puffs on to great comic effect. ‘Chest’ he signs, huffing air in and out dramatically, then ‘fantastic!’ And he blows Steve a kiss. Roy, meanwhile, remains an enthusiastic and prodigious smoker. His fingers are stained a deep mahogany and his clothes look as though they are quietly composting in a miasma of woodsmoke and ancient roll-ups.
Social workers and case managers carefully match individuals with carers, looking at everyone’s needs very closely. Recent successes are a girl with learning difficulties who didn’t want to be separated from her horse. A family with land was found, who would take both. And a man with Down’s syndrome, who had lived with his mother until she died, is happily settled with a couple in their late fifties whose grown-up children have left home. But some people are never going to be suitable for adult placement. ‘Anyone with a history of violent crime,’ Deb Winnicott says. ‘And if an individual is extremely challenging and needs one-to-one support, we would block that from the start.’
Families are formally assessed four times a year and continually monitored. Winnicott says she might visit the Parkers once a month, then not for a while, depending how everybody is coping. In the early days, Roy would think she was coming to take him away. Now, when she arrives, she says, ‘Hello, Roy, I’m here to support Steve and Lorraine.’ But placements do break down; Mark was unhappy with his previous family because both partners were at work all day. Every ‘service user’, and Steve cringes at this term, is given time alone with a social worker to enable them to raise problems in confidence. Because the men are older, the Parkers feel uncomfortable with some of the wider issues thrown up by the scheme. ‘Technically, we’re supposed to be helping the boys become more independent,’ Lorraine says. ‘Which is fair enough for Mark, but Roy and Randall are old. They don’t want to know.’ When I ask if the men are in any way helpful, she has to rack her brains. ‘Well, Randall did the washing up for about six months, then he got fed up with it and he hasn’t done anything since. I don’t expect anything from them. I just want to make their lives as happy as possible.’
Rain has been buffeting the house for three days, turning the Parkers’ three-and-a-half-acre plot into a quagmire. Stuck inside, the boys do fight. Roy is pretty easygoing but Mark’s incessant chatter gets him down. ‘Roy has threatened to hit me,’ Mark complains. ‘We’re not friends any more.’ Steve talks them down, suggests ‘a better way to go about things’. Roy’s biggest achievement has been talking about how he feels. ‘He’d go into himself and get stroppy, and weeks later you’d realise he’s had a letter he doesn’t understand, or something has triggered this fear he’s going to be taken away.’
‘Sometimes he’s just sad,’ Lorraine says. ‘Now he’ll come and say, “I’m a bit down because this is the time of year my wife left me.” It’s so rewarding for us to see how much happier and how much more stable and secure they’ve become.’
I ask Lorraine if she has to make a special effort to find time for the children. ‘No, because I have the luxury of being here all the time. There’s plenty of time for everyone.’ By 7pm Dani is back from netball practice. Jake has been told that if he can get himself undressed, they will all watch a film together before bed. Randall, still waiting patiently for his dinner, makes an expansive circular movement with his hands. ‘Everything’s good,’ he says. I ask Roy where he thinks he’d be if he wasn’t here. ‘Dead,’ he says firmly. ‘I don’t like to think about it. Most people don’t get a second chance, do they?’
In the sitting-room, the TV is on, the table is laid and there is steak pie on its way. It is not hard to see why this works for the boys. Roy says more than once, ‘It’s like winning the lottery.’ But why do they think Lorraine and Steve like having them here? ‘We have our ups and downs but we all get on, don’t we?’ he says looking at Randall. Do you fight with each other? ‘Never,’ Randall signs. Then winks. Casting his eyes about the room, he points to a photograph on the mantelpiece taken on that day out in London; he clasps his fingers together, taps his heart and mouths three words theatrically: ‘Friends. Forever. Family.’ sharedlivesplus.org.uk
