This blog post has been written by Andrew Tyson one of our long-standing associates.

It is based on our response to the Department of Health’s consultation on the draft Care Act guidance. In Control produced a joint response to the guidance on behalf of the Inclusive Change Partnership which includes In Control, Inclusion North, Community Catalysts, Inclusive Neighbourhoods and Shared Lives Plus.

Under the banner of ‘Inclusive Change’ these five organisations have joined together to help local authorities and local communities change how things work for people needing support.

 

In 20 years’ time we will look back at today’s care and support system and shudder.  We will see a system that was chaotic, fragmented, failed to take account of our skills and connections and which above all else retained control.

 

In 20 years all this will have changed….

 

In 20 years people will have a single personal budget, one account for health, social care, education and our other needs. The money in that budget will rise and fall through life as my support plans and needs change. The way I make use of that money and the way I manage it may also change as I grow, develop and learn new skills.

 

In 20 years everyone will use the same community services, there will be few if any special places for disabled people. Those community services will be welcoming, accessible and accepting of all.  If I am working age I may well be doing paid work, or I may also or instead do voluntary work in my local community, perhaps to pursue some special interest, cause or passion.  I might go to college or attend a continuing education course. I might require people to support me to do my work or to learn; and I will draw on my personal budget to provide funds for those supporters.

 

I will have family members who assist me with my care and support needs, but only to the extent that they and I wish and they are able. I will still have someone who I can talk to about my personal budget and when I need to I will still go to see my GP and the practice nurses and specialist staff at my local health centre or hospital. And, although we will have great public services in 20 years I may choose to use some of my personal budget to directly employ other people to help with my support needs; or I may choose to bring in people from a local agency – it will be my choice.

 

I will have friends and real connections in my community.  I will feel supported and connected.  I will have choices about who assists me with my health and care needs and how they do so – and most important I will have control, control of my money, my support and my life.

 

Or not.

 

It is not only science fiction that is all about utopias and dystopias (the nightmare version); it is also public policy and debate.  In both there are perhaps more dystopias around than utopias, and certainly the way many have talked about the future of health and social care in recent years, all doom and gloom is very definitely dystopian.  What is clear today is that we are at a critical point in the journey of the welfare state; and the Care Act (2014) is a marker on that journey: is it pointing onward and upward or down, down, down? And how helpful and robust is the much trumpeted wellbeing principle that is supposed to underpin the new Act.

 

The headlines are largely positive: personal budgets for all who meet eligibility criteria for social care, with direct payments as the favoured way of delivering; good information and advice including for those who don’t meet the criteria; support for person-centred support plans (albeit confusingly renamed “care and support plans”), and a strong steer that the person must be at the centre of the planning process; a boost for independent advocacy support; a better deal for family carers; and lots of encouragement for council adult services to join things up, with children’s services, with the health service and beyond.

 

So what’s not to like?

 

Most of the coverage in the specialist press has focused on funding issues and particularly the shortfall councils will face with all the new assessment work.  But the fundamental challenges the new Act brings are not just about the how, they are also about the what; what exactly is it we are asked to do different that will move us toward utopia and away from the opposite?

 

We can only really get a sense of this when we scratch a bit deeper, beneath the surface of the Act itself to the draft regulations and guidance, on which the Department of Health consultation recently closed.  In Control and our partners in the Inclusive Change network (Community Catalysts, Shared Lives Plus, Inclusive Neighbourhoods and Inclusion North) submitted a response to the consultation which welcomed the Act, the regulations and guidance but which also expressed a number of forthright concerns – areas we want to see strengthening.

 

We said in our response that we strongly support the stated principles of the new legislation and the supporting documents: in particular we welcome the wellbeing principle, which is about “helping people achieve the outcomes that matter to their life.” We recognise this principle as embodying very much the same drive that led to self-directed supported, co-production and asset based community development.  Finding a way to promote a person’s wellbeing has to be a good and much more positive approach than the old way which was about swooping into someone’s life (often too late!), like a fourth or fifth emergency service to solve problems – and then swooping out again to wait for the next crisis.  This is of course no doubt a bit of a parody: the best councils and NHS services have always “done prevention,” but the issue here really is about the basis for our support we offer to people. Is our support aiming to really meet the citizens who come to us as living, breathing individuals with families, histories, something to say and something to offer, or is it aiming to see them as problems to be fixed like a piece of broken machinery?

 

The wellbeing principle is a sound basis: our problem is that much of the rest of the guidance does not support it strongly enough and in too many places it hasn’t moved far enough from the old deficit-based thinking.  This is nowhere more the case than when it comes to the question of assessment. The third section of Part 1 of the Act is headed “Assessing needs” and the supporting documentation takes us through the detail of how this is to be achieved.  To be crystal clear: of course we are not saying that social care services should not meet needs, nor that we should not be responsive when people come to us in distress, to tell us about their needs -that would be unethical if not nonsensical. What we are saying is that if you start your first conversation with someone in difficulty or distress from the premise that your role is to very simply define, identify and meet needs then you are setting out on the road to the gift of care; and giving the gift of care is the precise opposite of the wellbeing principle and the basis of self-direction.

 

Many of the subsequent areas for strengthening we see in the guidance documentation follow or are closely related to this fundamental issue.  Some of the main ones are as follows:

• The guidance promotes self-assessment but falls short of making it the default position that council decisions in signing off support plans and allocating resources should be based on that self-assessment.  The council keeps control.
• The legislation seeks to promotes the position of family carers by strengthening their right to an assessment, but the guidance is not sufficiently strong or clear in setting out how carers’ assessments and citizen assessments should sit together, particularly when it comes to the important issue of resource allocation. What we require is a formula that neither discounts the caring relationship in many families, nor presumes a “wish to care.”  Short of this, nothing substantial will change for family carers.
• When discussing the support planning process the guidance seeks to promote the inclusion of “universal services and/or unpaid support.” Good – but it does this in such a weak way that you have to wonder whether anyone will notice.  The guidance does not say as we believe it should that such services and support are the first recourse for many citizens and that many of the best plans are based on this premise.
• Also in this chapter, whilst we are pleased to see the guidance underscoring the need for a range of approaches to planning support, we would also like to see this as something councils must ensure (not merely “should” as the guidance says).  The issue of weak support for good principles recurs throughout this part of the guidance, too many “shoulds” and not enough “musts” will allow poor councils off the hook, hanging on to control which the Act implies ought now to rest with citizens.
• We are pleased to see this chapter support an enhanced role for independent advocates where people have difficulty being involved and influential in the preparation of their plans, but we would want the guidance to make it much clearer that this support must never be at the expense of support from family and friends.  Again the question: who is in control?
• The area needing strengthening in the chapter of the guidance on support planning however is the answer to the question: who owns the plan?  We believe that the answer is -or should be – the person at the centre, they own their plan. It is the council’s job to guide them, and it is the council’s job to fill in any gaps in relation to information the council requires.  We don’t agree that it is sufficient to encourage citizens to produce plans for the council.
• We do however support and are genuinely heartened by much of the chapter on personal budgets.  This is a real victory for those individuals and families who have worked so hard to pioneer an approach which 10 years ago was new, unknown and sometimes frightening.  But there are some issues here.  We have reservations in particular about the total exclusion of intermediate care and reablement from personal budgets: we have concerns that an unintended consequence here will be the frustration of choice and control through confining someone to a service designed to meet crisis or short-term needs.
• We are similarly broadly supportive of the chapters which follow on direct payments and on review, but we believe that both could be strengthened in a number of places.  We strongly support the statement that says that review “must not be used as a mechanism to arbitrarily reduce the level of the person’s personal budget.”  We know of instances (many through our work on the In Control helpline) where this has happened, and we now look forward to seeing this practice cease.  We see the review process as central to a well functioning social care system: this hasn’t always been the case previously, and we need to see councils held to account on this issue.

This is really little more than a flavour.  The guidance documentation is comprehensive and generally good, and our response does not try to cover every issue it addresses. But our view is that where it says positive things it sometimes does so insufficiently strongly and in some important places it needs to be more helpful.

 

So: utopia or dystopia; which way is the Care Act leading us?  We know that what the law is by no means everything, what it specifies is only one very small piece of a complex jigsaw.  We know that what makes the biggest difference is people caring for and supporting one another.  But legislation and guidance do create the conditions for support and care: local councils in particular see the new Act as fundamental to the way they conduct themselves. It is essential that the regulation and the guidance that accompany the Act are strong, clear, nuanced and most importantly that they follow through on the Act’s underpinning wellbeing principle and “help people achieve the outcomes that matter to their life.”

 

By Andrew Tyson

 

A copy of the full response submitted to the Department of Health for its consultation on the Care Act guidance can be downloaded here:

 

Care Act Regulation and Statutory Guidance: Response from Inclusive Change
Partnership