What is Shared Lives like?

Paul and Lorraine have moved into Linda’s family home and share their busy lives with Linda’s family. Film: http://inclusivefilms.org/our-films/a-real-home-a-real-life/paul-and-lorraine/

Up front?

Amongst the criticisms of personal budget systems doing the rounds at the moment is one based on research which purports to show that there is often a significant difference between the ‘upfront allocation’ which an individual is offered at the beginning of a personal budget based support planning process, and their finally agreed allocation. The research suggests that complex and bureaucratic processes which produce the upfront allocation are therefore a waste of time and money (which I agree with) and that this calls into question the whole concept of personal budgets (which I don’t agree with, not least because the only large scale survey of people using personal budgets consistently shows that for most people, most of the time, personal budgets result in better lives than the alternatives).

An upfront allocation of resources is essential if people are to start the planning process with some idea of the amount of money they have to spend. But it’s only supposed to be a provisional, ‘ball park’ figure, and it should be relatively easy to change, as the individual and those supporting them to plan home in on the most effective approaches. There is a chicken-and-egg dilemma inevitable in any personal budget based system: you can’t plan realistically without knowing roughly how much money you have to spend, but you don’t know exactly how much money you need until you’ve come up with a plan to spend it. In a traditional, professionally-led system, this doesn’t arise, because you are allotted a service from a limited menu of services, which have already been purchased and in which any vacancies need to be filled, in order to make the council’s books balance.

Critics of personal budget approaches argue that you can still help people to plan creatively without an upfront allocation. They point to the difference between upfront allocations and final budgets as evidence that money and time invested in complex or time/resource hungry Resource Allocation Systems (RAS) is wasteful and just puts barriers between people and their choices. In this, I agree with them. If an upfront allocation is supposed to be a ballpark figure, why invest in a complex computer system or bureaucracy to generate it? Local authority Finance Directors might respond that if you don’t do that, there is a risk that people will be given upfront allocations which are too high, and which are harder to lower at a later stage, thus bankrupting the council. It’s worth noting that any approach to dividing up limited resources will always involve some kind of RAS – but traditional systems have hidden the process of dividing up resources, rather than attempting to make it transparent. In a traditional system, resources are divided up and allocated after a person’s support plan has been produced, rather than attempting to do this ‘up front’. As a colleague says of the long period when the system was based on person-centred planning, people’s plans were beautiful, but the response was the same old narrow range of block purchased services, because the state retained control on planning and spending resources, not the individual.

At the root of this problem is what I’ve referred to before as the lie at the heart of individual control of public service budgets: you are told you can have individual control of that money, but actually, resources are limited (and increasingly oversubscribed) and the council FD retains a legal duty to balance the books, regardless of your choices.

There is also an assumption amongst those in charge of public budgets that people will generally want to spend every penny they have been ‘given’, rather than to find cheaper alternatives. This is true where people are offered inadequately funded support from a limited range of services. If all a person is offered is homecare, s/he will probably want as many hours of it as they can get, even though it might not be able to help them achieve a good life. The more genuinely open and creative the planning process, the more likely people are to think outside the box.

So the critics of the RAS argue that we should abandon upfront allocations as a blind alley. The problem with doing that, is that it returns us to traditional care management. If traditional care management had been great at helping people to make individual choices, there would have been no need to introduce something so deliberately disruptive as personal budgets, but care management was far from great in that regard. Only systems which enable individuals to exercise choice, control and power have shown any evidence of being able to widen the range of support approaches people access. It is very striking that the current criticisms of personal budget systems do not include clear descriptions of alternative approaches, but tend to conclude with fairly general calls for things to be done better. They often call for a faith in social workers’ ability to construct truly individual care packages, which ignores the power constructs within which those workers have to operate. So is there a practical alternative to the way in which personal budgets are currently implemented in many areas?

To my mind – and I’d be interested in your view on this – Read more of this post

Into the light

The mother of ‘Chloe’ wanted to share her feelings about the Shared Lives support her daughter has received from Shared Lives carers Lorna and Graham. I’ve heard so many powerful testaments to the work of Shared Lives carers, but Chloe’s Mum’s letter to Lorna and Graham knocked me for six:

I wanted to put pen to paper so to speak to share with you both my thoughts, my family’s thoughts and some of the insights Chloe (not real name) has shared with us all. It is my wish for you to pass this on for others to help describe, explain and promote the shared lives experience.

It was Chloe herself who first made her decision to try this way of living.  She was at perilous time in her life following the tortuous and complex two year long break up of her family. She found herself as she described “..in the darkness”.  She talked about wanting her own life but couldn’t see a way forward through her learning disabilities and the people obstacles in her way.

The service provided a safe place. This became Chloe’s and the rest of the family’s most used word in those early days. Chloe talked open about the trials and tribulations but feeling safe was the foundation. It was evident that she was developing an understanding of co-operation and feeling a part of things. She had often felt unheard and excluded in the past from small choices to major decisions and her frustrations were often evident with her “melt downs” (her own words). Now her emotions have now stabilised there have been no more melt downs – aggressive outbursts or incidences of challenging behaviours.

Chloe was beginning to talk about discussions, informed choices and decisions Chloe was part of even though sometimes they didn’t suit her on the day. These days she is more willing to compromise – thinking of others needs, will negotiate, and empathise and has the skills and improved vocabulary to do this.

She is heard, supported and has begun to make sense of the times before Lorna and Graham. She started to talk about things with her brother and sister and realised from the beginning that her family could be part of her shared lives -or not – if she so wished – it wasn’t a case of one or the other.

She had started to take an active part in her meetings and felt empowered, meetings in which she used to sit through in almost silence. More than once she described Lorna and Graham as bringing her  …’”into the light!”  She used to talk about things in her life and would want everyone’s opinion of what she should do – she now lets us know what she would like. Chloe has been able Read more of this post

From the police force to Shared Lives

I’m very grateful to Allan who is a Shared Lives carer with PSS Scotland for very kindly writing about his journey into Shared Lives, providing daytime support to local people:

My name is Allan and I retired as a police officer about four years ago. My hobbies include amateur football refereeing and fair weather motor biking. When I retired from the police I decided to take some time out to do some projects around the house. After about a year and a half all the jobs were done and I decided that it was now time to have a think about what to do with some of my time in the future.

My wife Moira was a little surprised that I was interested in working in social care, but as always she was very supportive and I found out about Shared Lives. Meeting PSS Scotland was the start of an adventure and ongoing learning process for me, which opened my eyes to a lot. A couple of weeks after being approved as an ‘Adult Placement Carer’ I was introduced to ‘Sally’ (all names changed) a very pleasant young lady who was looking for day support several days a week. After being thoroughly briefed and advised we ventured out together. In next to no time we both seemed to click. I gained a lot of good experience very quickly and was glad of the sound advice provided by those more experienced than I. Within a short time of meeting Moira, she and Sally were engrossed in craft making and I was really pleased and relieved that Sally had taken to us all so quickly. Although I no longer support Sally regularly, I am sometimes called upon to help out now and again, which I look forward to immensely.

Peter, who I’ve supported now for the best part of two years several days a week, is a similar age to me and he has learning, physical and communication difficulties. I really enjoy being in his company and I think he feels the same. I encourage Peter to decide what he wants to do at any time I am supporting him and I get great satisfaction when I see him thinking for himself and making good sound decisions about many things. Peter occasionally visits my home and has got to know Moira, my boys and my sister and Mum pretty well. I was impressed at how Peter engaged my youngest son Aaron, bringing Aaron out of his shell and improving his confidence and ability to interact with him. Peter is particularly interested in music, so we’ve been to one or two events hearing live amateur musicians which we really enjoy – despite our difference in musical tastes!

I support Richard, who is now 91 years young, one morning a week. Richard has some mobility issues and is partially sighted. I really look forward to meeting up with him help him to do some shopping. Richard is as ‘sharp as a tack’ and is such a fun loving individual with a sharp and witty sense of humour who seems to really enjoy life. He is quite simply a joy to be with and spending time with him is one of the highlights of my week – we really have a good fun when together.

Finally, I support Simon one afternoon a week. Simon, Read more of this post

Which group are you in?

I’m part of a working group on the Social Integration Commission (hosted by the Challenge Network and chaired overall by Matthew Taylor of RSA), which is looking at the ways in which we mix with people different from ourselves, and whether that mixing or lack of it has an impact on people and the communities they live in. People mixing with other people, whom they might not otherwise have met, is at the heart of Shared Lives and Homeshare. Both also help people who need support to mix with others in their communities, in ways which many other forms of support either don’t address, or in the case of some building-based services, actively prevent. They make this possible by avoiding seeing the individual only in terms of their support needs and instead seeing them as someone with lots to offer to others (“He/She is just part of the family” is a common Shared Lives carer refrain). A great way to help us to stop dividing the world into groups of people who need support and groups of people who provide it, is to celebrate the work of people who, like many of us, have at different times been part of both groups.

With this in mind, I asked our members recently for examples of Shared Lives carers who have drawn on their own lived experience of health issues or using services. Sandra who runs the Herefordshire Shared Lives scheme kindly got in touch about two Shared Lives carers who wanted to share their stories. Sheila felt it was important throughout the process of applying to be a Shared Lives carer to talk about her own mental health issues some years ago. Sheila now uses her extensive life skills and experience, including her experiences of mental ill health, to help others who have mental health problems. Sheila feels that loneliness and the lack of support will often be the major contributor to the person having a mental health episode.  Her own experiences have helped her to develop her expertise in recognising mental health issues and helping people to maintain their mental health, with feeling comfortable in acknowledging and talking about the issues surrounding mental health a crucial part of what Sandra describes as Sheila’s “outstanding practice of non-judgmental support” to the people who visit or live in her household.

Helen, another Shared Lives carer in Hereford had breast cancer some years ago, from which she has now recovered. She lives with Jenny, who needed a lot of support with a longstanding OCD and other challenges, following a close bereavement. Jenny has had many new experiences through living with Helen, amongst her favourite being walking on sand and seeing the sea. Jenny’s OCD left her with a fear of preparing food, but she now helps Helen, who used to be a professional cook with the police force, in preparing teas for the police cricket team in the summer. Jenny was diagnosed with breast cancer last year. Helen was able to explain a lot from her own as a cancer survivor.  This was reassuring to Jenny and her whole family as they faced treatment, which was traumatic but successful.

Shared Lives is far from unique in examples of this kind, but the Shared Lives approval process is very values-focused, and perhaps more ready to value lived experience, which can be hard to do if your profession or organisation sees the ‘ideal’ attitude as being one of impeccably-boundaried professional detachment. So in our work developing Shared Lives for groups of people who are stigmatised, such as people with mental health problems, and who often lack formal qualifications, such as offenders, there is the really exciting potential to recruit many more Shared Lives carers with lived experience, and helping people from those groups both with getting more effective and less stigmatizing support, and with tackling the employment barriers they face as they move on.

Growth is the enemy of diversity?

Soon, all councils in England are going to have some new duties, thanks to the Care Bill which will become the law setting out what every area has to do when offering social care. I want to look at a couple of those duties in blogs over the coming weeks, starting with the duty to develop a diverse ‘market’ of care providers, so that people who can now take control of the money allocated to them to meet their social care needs have a real choice of different things to buy (otherwise, what’s the point in having a Direct Payment or personal budget?).

I can think of four kinds of ‘provider diversity’:

  • A range of approaches (eg you can choose Shared Lives not just care homes or home care)
  • A choice of providers (different organisations out there, even if they are doing some of the same things)
  • A range of scales of provider, from the security and infrastructure of going to a household name like Bupa, to the personal relationship of getting support from a tiny micro-enterprise which may have been set up specifically with you in mind
  • A choice of ownership model.

I’ve blogged before about the ways in which we at Shared Lives Plus and our sister organisation, Community Catalysts, are helping to bring Shared Lives and Homeshare into prominence as distinctly different social care approaches people have not previously been offered. Likewise, when it comes to diversity of scale, we’ve supported Community Catalysts in its extensive work to grow the micro-enterprise sector: Community Catalysts has supported 40 or so councils to develop micro-enterprise friendly areas; we have worked together with DH support to produce guides like last year’s guide to Commissioning for Provider Diversity. That work’s been successful in the areas which have bought into it, but we know that in most areas, the smallest micro-enterprises are very vulnerable to being inadvertently squashed out of existence, whilst at the other end of the spectrum, there are plenty of acquisitions and the average size of the larger providers is increasing, which suggests that the number of different organisations is decreasing, not growing as the Bill envisages.

So there are challenges in delivering each of those four kinds of provider diversity, but perhaps it’s the last of the four where there is almost no real activity or progress.

As long as we see ownership as being a public/private choice Read more of this post

People are the most effective integrators

At a discussion about integration the other day, someone talked about the four agencies which came to see her parents to support her Mum who has dementia. Each with their own agenda (continence, aids and adaptations, homecare etc) and each demanding the same set of information from the lady who now struggles to communicate clearly and her husband who is at his wits’ end.  We’d all see that as wrong, but what to do?

If your world view is that of a service provider you may well suggest the solution to this is for the services to share their data. To do this, of course, you need to align everyone’s IT systems. This will cost £10bn and collapse in miserable failure about five years later.

Looking at this problem from the family’s point of view, however, you might decide that the key thing is that, if each agency wants a similar set of information, the information gathered by the first one needs to be given to the individual or their family, on a sheet of paper will do, but you could throw in a USB key as well if you want to get technical, and the family can then show that information to the next agency, who can add their own sheet if they’ve collected anything new. These days you can capture information in an instant via a photo on a smartphone and then translate that info into the agency’s particular format if they need to.

It’s a simple, virtually free solution, but there a couple of quite deep cultural changes implicit in it. The first is that an individual or family can and should take ownership of their own information, and by implication share ownership of their care package. The family might lose it, I can hear some people saying. True, they might, in which case they will need to accept having to repeat themselves.

Another challenge is that this only works if the agencies are after roughly the same info, which suggests perhaps that they are all interested in similar things. This would be more likely to be true if they shared the same goals and priorities. It’s time to set one set of goals for all public services. I suggest the goal of helping people to achieve well-being, which handily has already been set as the goal for social care by the Care Bill. From that shared, holistic goal will come far better results in terms of integration than a hundred restructures.

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