Carers are Individuals in the Act

Vic Citarella considers carers in the evaluation of Fulfilling Lives: supporting people with multiple needs projects

It is, perhaps, self-evident that people with complex needs frequently require correspondingly multiple and complex responses… wrote Henwood and Hudson in their 2009 CSCI study Keeping it personal. Now as Carers’ Week passes we have, in the Care Act, the strongest rights yet for carers. When put together with the duty of assessment for young carers, in the Children and Families Act, the legislative framework is suitably reflective of the very complexity identified for policy makers five years ago. It is a challenge for the Fulfilling Lives: supporting people with multiple needs evaluation to explore, understand and share how project investment resolves the problematic issues of real life complexity. Those involved in caring relationships shaped by homelessness, criminal behaviours, substance misuse and fragile mental health are potential benefiting contributors to making the most of that significant investment. The evaluation process has to identify both the benefits and contributions of carers to the success of Fulfilling Lives.

The Care Act refers to ‘individuals’ and so clearly covers both those with care needs and carers. It has a principle of well-being and includes duties to:

• Reduce carers’ needs for support (prevention)
• Provide information and advice (including financial advice)
• Assess carers on the appearance of need and that they may benefit from prevention, information or other support
• Apply eligibility criteria to carers’ services (yet to be defined in regulation)
• Provide services to meet carers’ assessed needs based on an entitlement
• Charge for carers’ support as applicable
• Prepare a support plan with the carer and help them choose how it is met
• Make sure there is no gap in services when people move home
• Promote diversity and quality in provision of carers’ services

There are also important new legal provisions regarding transition, delegated duties and safeguarding. The children’s legislation ensures that young carers have the same rights as adult carers based on the appearance of need.

The complexity kicks in when seeking to pinpoint who exactly is the person in need and who the carer is. Where the needs assessment applies and where the carers assessment? People, families, relationships, households and, indeed, communities characterised by multiple and complex need do not neatly fit into binary boxes. Such is the stuff of ‘gift’ relationships on which much of the system is founded. In fact relationships ebb and flow between cared for and carer, dependent and independent, care-giver and recipient, child and young carer – at one moment symbiotic and then parasitic, sometimes mutually beneficial and at others potentially harmful. That fluidity is equally a necessary feature of the evaluation process.

Whole System

Each Big Lottery, Fulfilling Lives project is measuring how well it is achieving its objectives. In so doing there is the overarching objective of providing tailored or bespoke support services that are personalised and unique to the needs of each individual. Those people will meet the given definition of complex need. The individual support will address all the issues faced from within the funded partnership. Because the legislation is about ‘individuals’ those people may or may not be in a caring relationship – the important thing is supporting them to tackle the complex need. Clearly a whole system approach to support is needed and equally to evaluation. That whether support is provided as a person in need or carer in need diminishes in the face of ensuring that the support system is built, maintained and becomes self sustaining – making change real.

The legislation allows for this in its founding principle of wellbeing, in its emphasis on prevention and its recognition of the individual with ‘an appearance’ of need whoever they are. Similarly the evaluation allows for this in giving even weight to input, activity, output and outcome. It uses case studies and formative approaches to learning as well as the more quantitative techniques – both are important. The research logic chain refers to individuals with multiple and complex needs rather than service users; just like with people being cared for and carers, it is not an either/or when it comes to the Fulfilling Lives evaluation. It is about capturing what works, identifying why and how so that others may learn and replicate success.

First published on the Fulfilling Livesblogging site

Mike Wright Guest Blog: ‘Happiness Runs’! Or, How I Keep Mentally Fit

Mike Wright shares some thoughts on maintaining personal well-being

Mike Wright

One way that I try to keep myself mentally fit is to keep physically fit. I don’t say that to suggest that you have to be physically fit to be happy: in fact, some of the most jovial personages are often represented as rich-living, portly, ruddy faced, bon vivant-type characters (I’m thinking Santa Claus, Buddha… and, of course, Brian Blessed!).
But – for me at least – a bit of physical exercise helps to get the endorphins flowing (whatever they are), plus gets me out the house and away from distractions for a little while. For me, running is a form of meditation. It helps me to shift the focus from my senses and thoughts and settle into a rhythm that allows me to direct my attention inwards. The result is I find myself aware and present, without forming any analytical judgements about my environment, the past, or the future. What is left: a sense of stillness and peace? I suspect this is what encouraged Forrest Gump in the famous 1990s movie to take up jogging and stop himself from dwelling over when he and his lady love would be ‘like peas and carrots again’.
Actually, if the words ‘I’m drunk’ are substituted for ‘I run’ (perhaps both a literal and figurative suggestion?), the following lyrics of Bob Dylan are quite fitting: Well, ask me why I’m drunk alla time/It levels my head and eases my mind. It seems that in fact most of us use some method of adjustment to reach a happy state.
However, I find it’s not really practical or possible to always be running – nor do I feel it to be positive to become addicted to practices that keep me from functioning and living in every day terms. So I have found other means of recalibrating myself towards happiness. I personally find that reading a poem, reciting certain song lyrics, or even just stopping and observing life happening, without interpreting it, can help. Like Tolstoy says, ‘In the name of God, stop a moment, cease your work, look around you’ – the old procrastinator!
Perrhaps try this: S.T.O.P….
There is an attitude expressed in Zen Buddhism I often remind myself of, as I feel it conveys a wholesome approach towards well-being. It upholds the practical wisdom that when we are hungry, we eat, when we are sleepy, we lay ourselves down – that our minds live harmoniously with necessary actions.
Obvious, right? Probably, but it isn’t always easy. I have experienced mornings when the alarm clock has seemingly beckoned an overwhelming task, as though I am Sisyphus, having to face rolling the proverbial boulder up a hill all Eternity, without knowing why.
But if instead of despairing, I perhaps invoke the gentle and simple spirit of Donovan’s lyrics and sing, Happiness runs in a circular motion. Thought is like a little boat upon the sea. Everybody is a part of everything anyway. You can have everything if you let yourself be’, well, then I find the day starts to unfold a little more easily.
Worth a try in your case? I think it may well be.

It’s Complicated – the Care Act and Multiple Needs

First published on Fulfilling Lives on May 28, 2014

The parliamentary ‘ping-pong’ is over, amendments agreed between the Lords and the Commons and the Care Act has Royal Assent. Everyone – local authorities, NHS bodies, public, voluntary and private organisations – are busy assessing the potential impact of the new law on what they do. How will it help/hinder; what are the gaps; what are the costs; what will we do now and what can wait; which clauses take priority; who is going to do what and how will we cope? The questions go on and the project and risk management training is put to the test. Projects will be making similar judgements themselves and the national evaluation team too will be considering how it might impact on our work on Fulfilling Lives; Supporting people with multiple needs.

Thinking positively, it is thus timely for a blog on the subject of the Care Act. If you are reading this then you are probably on the news and events section of our website dedicated to the national evaluation of Big Lottery Fund’s Fulfilling Lives; Supporting people with multiple needs. When you are done reading this, please do take a moment to look around the rest of the site and glean some more information about the anticipations of those involved.

It is certainly true that the Act, is a massive piece of legislation – both consolidating and creating law. For those of you seeking an understanding of the fledgling legislation see the government‘s explanatory notes. If you want to explore the extensive impact on those with multiple needs and their families then this and subsequent blogs will provide some thoughts and signposts that are intended to creatively provoke.

This is not simple stuff and the government has already published 19 factsheets and a glossary on the Act. It is not something that can be dealt with in a single blog. Even honing in on the Fulfilling Lives; Supporting people with multiple needs initiative doesn’t make things more straightforward. There are not many parts of the Act without significance to the initiative. To get an idea of the scale of effort involved have a look at the recent Adfam policy briefing. This, one of many that comes from an internet search, has the particular value of recognising that it is not just the Care Act but the Children and Families Act as well that requires attention.

So it’s complicated. But this blogger has a plan to trigger thinking about the Care Act. That plan has two elements which will feature in each blog:

• First, to share and comment on the approach of local authorities and other public bodies
•Second, to support learning and evaluation around the Big Lottery Fund’s Fulfilling Lives; Supporting people with multiple needs initiative

The blog plan will prioritise what is new in law and practice, alongside those aspects of the Act that are new in law but not in policy. Here we will focus particularly on considering how the Act might affect the national evaluation. The top half-dozen items of interest are:

1. Carer’s Assessments – clause 10
2. Eligibility – clause 13
3. Cap on care costs – clauses 15 and 16
4. Independent Personal Budget – clause 28
5. Care Account – clause 29
6. Advocacy – clauses 68 and 69

As an illustration, for one local authority, these are all in a project plan that contains 45 such high level items of which the risk RAG rating has 13 in the red – or lots of work to do and not yet ready – category. Their agenda seems like a worthy blogging schedule with the next being about Carers and Multiple Needs – what does the Care Act offer?