Right on the Money

“My mother has been lonely for 35 years, but no longer since she has been Homesharing. The scheme in Oxford needs to be more widely publicised so that more people can benefit” Daughter of Householder. Shared Lives Plus Friends and Family Survey 2017

In Homeshare, two people who would not normally meet each other are helped to get to know each other and become housemates. Usually an older person who has a spare room and who wants a little help around the house or some companionship is matched with a younger person who is looking for somewhere affordable to live. When a good match is found, the younger person moves in and contributes to the bills but instead of paying rent, agrees to provide a little help with, for instance, household tasks which the older person is starting to find difficult. With funding from Lloyds Bank Foundation and the Big Lottery Fund, we are working with local Homeshare organisations and national partners including Age UK to bring Homeshare to many more people.

Although Homeshare does not attempt to provide personal care to its older participants, Homeshare is often thought of as a way for a ‘vulnerable’ older person to get support and as a way to tackle loneliness in later life.

In reality, it’s more complicated than that. Research by the Co-operative and the British Red Cross has identified that loneliness can affect people of all ages. For instance, the report identified that nearly a third of young new Mums experienced significant loneliness at a challenging time in their lives. North London Cares and South London Cares, which also brings younger and older people together, found that people in their early twenties were the second loneliest group, after older people. Anouck, coming to England from her native France to live for the first time, lived with Doreen and their Homeshare arranged by PossAbilities in Rochdale is featured on BBC’s Right on the Money on Wednesday 19th July. For Anouck, Homeshare with Doreen was about much more than accommodation; it was the ‘nest’ to return to each evening and a way to get involved in local activities, with Doreen who also got out and more involved in local life than she had in a life which had been very home-based as an unpaid carer to family members for many years.

doreen and anouck
Doreen and Anouck

Just as we can all experience loneliness at different times in our lives, we can all become ‘vulnerable’. The careful selection and safeguarding procedures of Homeshare organisations have been developed in recognition of the particular concerns many older people may have about house-sharing, but the model avoids applying a blanket ‘vulnerable’ label to everyone over 65, or assuming that no younger person ever feels vulnerable. This puts Homeshare organisations in an unusual place for a charity (but a very normal one for, say, a dating service or a commercial home-sharing service such as AirBnB), which is recognising that there can be risks in sharing a home, and enabling two people (and often, their families) to understand them and manage them, but not trying to take over: the participants ultimately decide whether to take part and with whom, and they develop their own version of the standard Homeshare agreement, and taking responsibility for it, with the local Homeshare organisation on hand if they run into difficulty.

This approach has a strong safety track record but also creates space for the only real cure for loneliness, which isn’t in the end a volunteer or even a befriending project (useful as those approaches can be): it’s a friend.

I love that I am helping my householder and knowing that I am having a positive impact on her happiness. I love the stories that she shares with me of her life and experiences.”.  Homesharer. Shared Lives Plus Householder and Homesharer Survey 2017

Do the right thing

There is lots of discussion at the moment about self-employment, exploitative employment and the ‘gig economy’. Lots of people love being self-employed: it can (and should) mean being able to choose when and where to work, or with whom, and working with lots of autonomy, rather than with close supervision by a manager. You don’t get the continuity, pension, holiday pay and other benefits of being an employee, but you get more freedom. There are workers such as Uber drivers and Deliveroo couriers who are designated as self-employed, but who have claimed that they are really employees, who have to work when and where they are told, at a rate fixed by the organisation they work for, with penalties if they turn work down. Meanwhile, some care workers have claimed that they are not being paid for all the work they do, particularly if they are required to be ‘on call’ or to sleep at a service they work at, without being paid an hourly rate for that. And some foster carers, with an unclear self-employment-like status, are demanding employment rights, because, again, they feel that their work is controlled, not autonomous and some feel that they are underpaid for what can be demanding roles which demand long hours of hands-on care, with little redress if they feel unfairly treated.

These disputes and court cases will no doubt run and run and I’m not going to try to give any opinions on them, but we’ve watched with great interest and some anxiety, because Shared Lives carers are self-employed workers, whose employment status is often compared to that of foster carers. Shared Lives carers go through a three to six month approval process before being matched with adults who need support so that they can share home and family life. The individual moves in with the Shared Lives carer or visits them regularly, either way being treated as ‘part of the family’.

In some ways, the focus on bogus self-employment feels helpful to our sector. When Shared Lives is done properly, Shared Lives carers choose who they work with, they always use their own home (even if only as a base for day support) and they work with a high degree of autonomy, not according to rigid timetables, for instance. All of these factors are indicators of genuine self-employment. In some areas, the model has come under pressure due to cuts, which has led to the local scheme being asked to cut corners or ignore parts of the regulated model:

  • Despite an ombudsman’s judgement to the contrary, some commissioners want to regard Shared Lives as a 24/7 model of care, which would entail the Shared Lives carer potentially ‘working’ 24 hours a day. Where someone needs round the clock hands on care, they should be offered separate day support and in some cases, several Shared Lives carers work together to meet high support needs whilst everyone still feels that they are part of family life, not a traditional service.
  • Some areas are under pressure to shortcut the matching processes, which would result in less choice for both individual and Shared Lives carer.
  • One area recently raised the idea that Shared Lives carers should only be paid for the hours they are actively providing care whereas our good practice guidance suggests that Shared Lives is not paid by the hour and should involve at least four weeks’ paid breaks a year to be sustainable.
  • Many schemes constantly have to fight against a creeping tick box culture, which would replace the autonomy of Shared Lives households as they pursue ‘ordinary family life’, with a service mentality of closely-supervised staff and constant paper trails.

These pressures on the integrity of the model are based on a false economy: Shared Lives is an average of £26,000 lower cost per person per year when it is done properly, with all costs taken into account. The saving, which doesn’t even include savings which might be associated with better outcomes, is based on Shared Lives carers and their families choosing to contribute far more to people’s lives than they could be obliged to by a contract in relationships which can be lifelong if well set up.

Despite the complexity of the law, there is a useful simplicity at the heart of these questions: any of the above actions which undermine the Shared Lives ethos would also undermine the self-employment status.

The message to our sector – and perhaps others – is clear: don’t try to have it both ways. If you treat Shared Lives carers at times as self-employed and at others, as low status employees, expect expensive court cases along with all the other risks of the model not being valued and followed. On the other hand, spend what are usually modest amounts of time and money choosing, valuing and supporting households, and rewards multiply, as people live happy, low maintenance lives for decades.

The legal arguments will always be complex (to address that, we are working with legal firm Clarion to produce new guidance for our members), but you don’t need expensive experts to tell you how to avoid calamity: just do the right thing.

A country for all ages

A paper on bridging the gap between old and young has been launched today by United for All Ages. It sets out how segregated by age we have become as a society and the solutions which are already out there. It’s been covered in the national press:

Here’s my contribution:

For a long time, Homeshare has been a neat idea which has struggled to take off. The concept is simple and appealing: someone who needs a little help or companionship, and has a spare room, is matched with someone who can offer a little help and needs somewhere to live. Usually a carefully vetted younger person moves in with an isolated older person: they pay no rent, but split household bills and offer around ten hours a week of help. With Big Lottery and Lloyds Bank Foundation support, there are now 20 local Homeshare programmes and hundreds of shared households: finally Homeshare is growing. This is partly because attitudes to sharing housing are changing – look at the huge growth of AirBnB for instance – and partly because more cannot afford housing and loneliness in later life is growing. But the new schemes are also changing the tone: Homeshare is not just about helping isolated older people, it’s also a way for an older person to give a young person a start in adult life. One scheme is aimed specifically at young people who are struggling. In Homeshare, both benefit because both contribute: exactly the kind of unity we need between generations.

Forever

Our annual conference is an opportunity to catch up with over 200 people who live Shared Lives and Homeshare and this year our Chair Richard Jones and I spent an hour talking with members about what life as a Shared Lives carer or local worker was really like for them.

What came across very powerfully is how precious Shared Lives is to those who live it and how fragile it can feel in a time of swingeing (and not always thought-through) budget cuts. One member said, “some people just want to know how much it costs.” They have “unrealistic expectations and think our spare rooms are ‘vacancies’ – if it wasn’t for Shared Lives Plus, the model would be long gone”.

Shared Lives is precious because “it replicates what happens in a family. It’s about disabled and non-disabled people living together and people of all ages. I shared my house with an 18 year old and an 80 year old, but the 80 year old loved being with younger people, so it worked”. Another told me, “My home is there for the person who lives with me, for as long as he wants it to be home – forever if he wants!”

Keeping the model alive and thriving is a fine balance: there has to be process and paperwork in Shared Lives, but it’s “a balance between doing and recording”. Through investing three to six months in recruiting and preparing the right people for the role (rather than resources being tied up in coping with high levels of turnover and disciplinary issues, as happens in some services), and then matching people carefully, people are allowed to make more human decisions about supporting each other: “in the care home the older person who lived with me had to wait until 6pm for her painkillers no matter how bad her pain was. Fear of doing something wrong takes over common sense and it becomes about protecting the service or the staff not the person. In my house she could have it when she needed it – she never asked to take more than the right dose.”

Shared Lives is deeply personal, and as one Shared Lives carer put it, you feel “personally accountable”. That’s a responsibility that everyone I talk to in our sector takes incredibly seriously. One of our jobs at Shared Lives Plus is to help people take on that responsibility safely and sustainably, with all the back that they need if things get tough, so that Shared Lives and Homeshare are there for people to choose forever.

More research needed

We are lucky to be working with some great academics at Kent University’s PSSRU, who are carrying out the first major research into the cost-effectiveness and impact of Shared Lives in recent times. You’ll find summaries of two ongoing pieces of research on our website with Cabinet Office funded evaluations of family carer support and mental health care coming soon. Kent University have also researched outcomes for older people and designed an outcome measuring tool which we’ve made available to all of our member organisations, and which is starting to gather a national dataset of information on the outcomes which people achieve in Shared Lives. A key feature of this tool is that enables people to say whether Shared Lives has a positive, negative or no impact on a number of areas of their lives and wellbeing. I think that being prepared for unintended negative consequences of care and health interventions is a key step towards getting a rounded picture of the contribution that support makes to living a good life. We’re confident that the tool will show the positive impacts that people tell us about constantly, but where there is variation, it will enable us to work with local organisations to improve.

We have just started a conversation with another university about Homeshare, which is also being evaluated by the Social Care Institute for Excellence as part of the £2m Big Lottery and Lloyds Bank Foundation funded national partnership. However, both Shared Lives and Homeshare remain under-researched compared to other sectors. Here are some of the things we’d love to know, or be able to prove, which are not yet being researched:

  1. What are the ‘preventative’ outcomes of Homeshare? How can Homeshare make the most impact upon people being able to live well for longer in their own homes?
  2. The cost-benefit of Shared Lives breaks and day support: most of the research at the moment looks at live-in arrangements, but this is only half of Shared Lives provision.
  3. What motivates Shared Lives carers? Some local organisations have a handful of Shared Lives carers, whilst others have hundreds. Shared Lives schemes appear to experience very small turnover of Shared Lives carers compared to other forms of care. We need to know more about who to reach, how to reach them and what best motivates people to take the huge step of becoming a Shared Lives carers, and to stop. We think we know, but it’s never been ‘properly’ researched.
  4. What impact does Shared Lives have on the rest of the household? We hear lovely stories from the children of Shared Lives carers: it would be great to collect more of their stories and understand their and other family members’ experiences and contributions in more detail.
  5. We know that matches can last a lifetime, but what factors make some matches last decades and what leads to the small number of matches which break down and what happens to people post-Shared Lives? There may be no ‘typical’ length of a Shared Lives arrangement: some people want to use Shared Lives as a stepping stone to their own place and others are looking for somewhere to settle down forever. What goes in to some matches being able to continue even when the individual develops complex health needs: the role of the Shared Lives household but also the local organisation and partner agencies?

Little miracles

I’m grateful to Anne Watts for getting in touch to share a little about her inspiring lifestyle, built around caring for others, which she writes about in her blog (eg The Blue Dictionary and The Woman from Belgium) and books which you can find here: www.annewatts.co.uk . Ann’s way of living has elements of both Shared Lives and Homeshare. It seems extraordinary, but I wonder how many others live in this way or as Anne suggests below, would be willing to? Anne says of Shared Lives:

“Like all the best ideas, it is simple, straight forward and provides fertile ground for the little miracles of healing and kindness  that carers see every day, and  you certainly do in your work.

My back ground is in nursing (50 years of it – and going strong). Since returning home in 2000 I saw how there were great yawning gaps in the caring profession, not being adequately addressed, just tinkering around the edges over the ensuing years.

The inadequate warehousing of the vulnerable in society; those with mental health issues, the disabled and the elderly – were unacceptable and I wondered what I could do to help in an effective manner.

Beginning with an elderly relative who was frightened of going into hospital or a care home, I moved in and cared for her within the stable, secure and much loved home she had shared with her recently deceased husband. She flourished, became her old self, had a quality of life she began to enjoy again and died peacefully at home, with family around her, two years later.

Immediately I was inundated with requests from people to care for their parent etc. And have done this now for some 10 years.

I am paid in free board and lodging and minimal expenses. In return I live in, shop, clean, cook, drive, and re introduce people to life again. No more sitting alone all day, waiting for a carer to rush in at any given time to give very basic hygiene care.

With a live in carer who can see the life not being lived clearly, there are drives into the countryside, walks, picnics, visits to old haunts, nutritious food, whizzing down the aisles of the supermarket choosing long forgotten favourite foods to enjoy.

Watching someone come back to life is the greatest remuneration there is.

99 year old Eileen had shared many a holiday with her husband in Spain. Since his death (they were married 72 years!) her life had shrunk to sitting alone, waiting to die. Her family were afraid when I suggested taking her back to Spain for one last holiday-“what if she dies on the plane ” etc.”

So, I took her to Sainsbury’s, she chose olives, tapas, red wine and we had regular Spanish picnics in her garden. She always blossomed into the giggly young bride she had once been as she told me all about the times she and her beloved Frank had enjoyed in Spain.

I drove her down to Cornwall to attend her grand daughter’s wedding. She loved it and we stayed three days. She was still talking about the champagne a few days before she passed away 8 months later.

Living life right up to the moment you die – that’s what it’s all about.

Now I live in Oxfordshire, caring for an 80 year old gentleman for whom Parkinson’s Disease is tightening it’s grip. The worry and stress of fearing admissions into hospital have dropped from his face, and the certainty that he is now safe in his own home has given him a new lease on life.

So, I am living the Shared Life ethos in reverse I suppose. I do not have a home of my own, having lived my life helping others in so many ways, but now can offer my skills in this manner. I have been overwhelmed and shocked at the response and requests I field whenever it becomes known that I am ‘available’. The need is all around us – as you well know.

But they can be addressed, a step at a time.

I just wanted you to know I’m out here – and there will be many others who can do what I am doing. Keeping elderly folk out of hospital beds, and fretting about nursing home costs/standards of care and loss of independence.”

www.annewatts.co.uk