Jane Campbell's response to the government's consultation on the future of social care

Government stakeholder event to launch six month deliberative period on the future of adult social care

12 May 2008


Clarity of vision and purpose is critical to a debate which has too often been fragmented. Rather than separately debate how to offer independent living to disabled people, support to carers and fund long term care for older people I believe we need to begin by agreeing a single aim to which we are all working, namely:

How do we deliver a support system where people's human rights are enshrined and everyone's life chances equally valued and supported?

That is not the same as advocating a 'one size fits all approach', but it is the question we must keep coming back to in determining the approach or approaches, we do take and how we are prepared to pay for it.

I would also like to congratulate Ivan Lewis for getting the debate to this point and for his leadership in ensuring that whichever direction reform goes, control and personalisation will be guiding principles - they are the cornerstones of promoting independence, choice and well-being.

The vision David outlined refers to 'everyone'. We need to be clear who that 'everyone' is. Just as we do not see the benefit or importance of our health or education system as being confined to individual patients or pupils but as central to our social and economic success as a country, so we need a more expansive view of why social care - or whatever notion replaces it - will play in defining our national life.

That is why I believe the analysis of demographic change and its implications here and in Wanless, is given way too much prominence. It is important but not central to the debate we should be having.

We should be asking; how we are going to manage and prosper through this demographic change? What is the role of all our public services in helping us to do so, not simply reducing it to a question of how to pay for more older people needing care -- oh and younger people when we remember to mention them, which of course Wanless didn't.

I am not accusing Wanless of failing to take account of younger disabled people on purpose, but it is so indicative of the current debate being played out on the airwaves since the Prime Minister launched this debate yesterday. Scientific advances mean the numbers of disabled people requiring support when they are of working age, is also set to grow, and whatever the outcomes of this debate, we must have long term solutions relating to them too. The economic modelling and options set out by Wanless and elsewhere take no account of younger people, and in fact are largely based on the expansion of the over 85's.

We may need an entirely different formula for those born with an impairment or health condition who require support or who become disabled earlier in their lives to those who develop a need for support as they get older. But even that throws up tricky questions - should a person become disabled on their 59th birthday which system applies? If a disabled person has received support throughout their working life, should they also be paying for that same support in retirement? I am watching the clock myself, and I do not like what I see from my 60th birthday party.

A wider debate would relate to a far greater audience and help build the public benefit case for reform and investment. In that way everyone's life chances are maximised and social Care does not become the fault line.

We now need to be thinking about how to maintain a sustainable workforce as millions more people have to either balance work with caring. We need to ask what will the impact be on productivity and economic growth if more workers leave to care? Women still provide the majority of unpaid care, especially whilst still of working age. Are we going to risk sending gender equality into reverse?

With one in three children living in poverty already having a disabled parent, we must ask, what is the relationship between this debate and ending child poverty?

After the credit crunch, are we going to see the care crunch? How will working families paying mortgages, children's higher education fees, saving for their own retirement, step out of paid employment or finance their older parents care? Will we see new patterns of intergenerational disadvantage passed on from parent to child towards the end of their lives rather than the beginning?

Can family life sustain such pressures? No, this is serious and must not be left to social care alone. The word 'care' obscures everyday realities, increasingly disabled people and older people are being left to ‘go it alone’ and this subverts ordinary family relationships creating greater risks of family breakdown or abuse. I once told Ivan Lewis that should I lose any of my public service support, my husband would no longer ‘care’ for me, we
would require another service, it's called Relate! Care, in its truest sense is not unrelenting and unconditional. ‘Love’ maybe, ‘care’ no.

We need to be careful in this debate not to be contributing to propping up a 'go it alone' society where care and support becomes solely a private matter - where choice and personalisation means market individualism and little else. I am confident that this is not the vision of the people on the platform however others could easily translate it in that way.

Achieving our vision will demand social cohesion. Care and support is a vehicle for promoting and sustaining the social and economic participation of disabled and older people and their families. To be successful, we must find ways to bind people into mutually supportive relationships that empower both, not depress. This needs to be more tangible than simply trying to cultivate a 'caring society'. For example, I believe there could be huge potential in developing models of local cooperatives and mutuals, as vehicles for expanding choice and control, for people of all ages. Collectively helping the money to go further through investments which develop everyone's potential at different stages of their life course. Could this model be the next generation of genuinely user led organisations?

As we think bigger and integrate all public services in our vision we must not throw babies out with the bathwater. Sometimes a small entitlement can get lost along the way. Reading between the lines is seems clear that DLA may be rolled into the overall budget to pay for adult social care. I would like to put one further parameter around this debate: Disability Living Allowance should not be. Being a disabled person whether young or old, is an expensive business. When I think of my day yesterday; I wrote a cheque for my car insurance which is four times higher than my nondisabled peers; when my fellow Commissioners are booking their holidays in the sun this year, I am doing the same, but I am paying for an extra ticket on the boat, hotel bedroom and mouth to feed. Yes, the DLA is a small offset to a very expensive business. Ask any disabled person.

And it is back to the asking - I want to end on David's first question.

What more do we need to do to make our vision of independence, choice and control a reality?

Well that's easy. We must use the opportunity of this deliberative period not to talk amongst ourselves about how to deliver co-production, but to co-produce with older and disabled people and their families, as well as the broader public, the way forward; and then when we know the way forward to continue to coproduce all the decisions along the way. Nothing about us without us, would then be truly at the heart of supporting people's life chances.


Last Updated: 22 Jul 2009