Speech: Social care as an equality and human rights issue

Speech by Baroness Jane Campbell, Chair of the Disability Committee and EHRC Commissioner, at the IPPR 'Power to carers and users: transforming care services' event, 19 February 2008

Ivan Lewis is to be congratulated for his commitment to the personalisation agenda. His enthusiasm for this approach to social care delivery brings him closer to disabled people’s struggle for a public support system which gives us greater choice and control over our lives.


However it must not be forgotten that personalisation is something that disabled people and their allies have been pioneering and campaigning for the last 30 years. Indeed taking personal control over one's publicly funded support began with a group of disabled people who lived in residential care in the 1970s. They wanted to experience choice and control in their lives. So they set up what was then called the SOC schemes. Self operated care, a precursor to direct payments and later individualised budgets. Yes, the blueprint for what the Department of Health, various think tanks and not-for-profit organisations like In Control, talk about today, was devised by Paul Hunt, Philip Mason, Liz Briggs and John Evans. The first-ever recipients of an individualised budget in -1979.

This small group of people pioneered the shift of resources from residential care to ordinary housing. But more importantly, they inspired increasing numbers of disabled people to reject services which created dependency and social exclusion, and demand the money to decide themselves how their needs for assistance should be met.

This is how independent living snowballed and for a while everything looked rosy in the garden. People like me could access the right amount of support, not just to survive but live - live like my nondisabled counterparts. And people who required only a few hours support from low or medium eligibility bands, could access services and reconnect with work or their local communities. But it was not to last in the way we envisaged. By the late 90s, this potentially transforming public service remained in the hands of professionals, whose main preoccupation became rationing ever scarcer resources. And therein lies the major problem which blocks the transformation of social care from a welfare safety net, to an empowering human rights, public support service.

I was told we are here to discuss everything, except for increased funding. As if inadequate funding and co-payment (a trendy word for means testing) are inevitable. Well, it is hard to address transformation without recognizing, that overused term, the elephant in the room.

If disabled people cannot access services unless they have the highest level of need, then all the empowering transformed delivery in the world, will not change the inequality experienced by people and families who public service support to participate equally in society. And that is why the EHRC is so interested in social care reform. And why it goes beyond improving access to public services and focuses in particular on social care's potential as a vehicle for helping to tackle inequality and social exclusion.

When we debate the future of adult social care, we are talking about people's human rights and equality, not just for the person requiring the support, but for those with whom they share their lives.

Retreating public services will push many of you in this room to become either voluntarily or involuntarily - 'carers' sometime in your lifetime.

What does this mean?

Well currently, the overwhelming number of carers are aged 40-65. The majority of whom are women. The majority have given up work. Large numbers live in poverty, suffer poor health and regret the loss of the relationship they once enjoyed with the person for whom they now care.

When local authorities restrict their eligibility criteria, this is how it materialises.

For too long we have approached social care intervention by simply assessing the individual and their care needs in order to minimise serious risk to the person or those who care for them. But this approach combined with tightening eligibility criteria, no longer meets many people’s basic human rights.

We have seen from CSCI State of Social Care report that access to services – through eligibility criteria – is being restricted. 73% of English local authorities are only responding to critical and substantial needs. 13,000 less older people receive support in 2006 than in 2003 despite a 3% rise in people 75 years of age or older.

In providing only for critical and substantial needs, many local authorities are almost certainly failing in their duties to 1. promote human rights to private and family life and 2. protect people from inhuman or degrading treatment.

When we construct the future of social care human rights and equality must form the parameters of the service.

Any other framework will fail to provide services and support which enable people to maintain their own health, well-being and independence. It will ultimately accelerate the numbers of people whose needs become critical or substantial, and as a consequence draw more upon resources of the NHS. The cost will spiral and will not be offset by the few who meet the eligibility criteria and access individualised budgets and become economically active. Let me explain.

A colleague of mine who works at Price Waterhouse in a fairly senior role has a progressive impairment. He just got his package of support before his local authority eligibility criteria changed to critical and substantial. He was lucky; his direct payment pays for enough human support for him to continue functioning at home and at work. If he were to apply now, he assures me he would not meet the eligibility criteria and the strain of coping without assistance would mean he would need to leave work. Eventually he would lose his home and become dependent on his family to meet his care needs. In essence he would become dependent and economically inactive. Price Waterhouse would lose a talented chartered accountant. Family members would eventually have to make difficult choices between their life chances and his support.

It is a system whereby the state loses, the marketplace loses, the family’s life chances are curtailed, and the disabled person relinquishes his citizenship. Yes, social care policy can cause that much damage.

The tensions that arise out of this scenario are nothing to do with the people, but everything to do with the situation. I am often asked about the tension that exists between disabled and older people and their carers. There is no inherent tension between the needs and aspirations of carers and older and disabled people. That is a false dichotomy. For example;

What sparks tension between me and my husband, is when we are thrown together for two or three weeks because my PAs have all gone sick at once. He has to leave work and therefore gets behind and I have to put up with his way of doing what I consider to be my own domain. I also had to stay at home where he can work and support me at the same time. My life gets put on hold. It is the situation that causes the tension not anything to do with our relationship, which with social care support is dynamic and equitable, when we both regain the right balance of control over our lives.

Roger and I co-produce my personalised support. I co-produced personalised support with my local authority when I volunteered for my local Centre for Independent Living. For years I have been engaged in coproducing the blueprint for direct payments and Independent living services. We should continue down this road of coproduction and personalisation, developing and growing it. However’ this brings me to the health warning on the personalisation agenda and coproduction.

When I think of coproduction, it is a collective exercise. One thing that worries me about the emerging personalisation agenda, which is very different from the one the independent living movement developed, is that it is an individual pursuit rather than a collective, mutually supportive exercise.

As Demos have pointed out, the very advantages that personalisation and co-production potentially offers also contain the seeds of building further inequality and disadvantage: 'there will be huge scope for self-directed services and personal budgets. These pay-offs will particularly apply where people can mobilise their own knowledge and resources to make the service more effective”. For those who do not -- the most excluded in our society, the people who need it the most, will lose out'.

When disabled people developed independent living - peer support, information, advocacy and training were at the centre of the concept. Without a collective critical mass, to guide, train and support, only the very able, white, middle-class had the personal resources to succeed. Organisations of disabled people, in collaboration with all those engaged in the caring relationship, in my view, must be the critical mass at the heart of the personalisation agenda.

And as for the elephant in the room.

The Kings Fund consultation for DH was set up on the premise that free social care is not an option for consideration and all the main parties seem to take this as given. There has not however ever been any serious debate about why practical assistance and/or personal, psychological and emotional well-being are any less important than physical health in terms of enabling people to maximise their life chances. No one else looks like starting that debate so that's definitely a USP as far as the Commission is concerned.

In my view we cannot afford not to invest heaps of money into a sector which could empower us all to fulfil our life chances.


Concluding Comments

So when we debate social care, what should we be talking about?

  • It’s about people living a productive and valued life
  • It’s about our relationships with one another.
  • It’s about our human rights
  • It’s about our health and well-being
  • And it’s about making the most effective and efficient use of scarce public resources.

These are the choices in front of us. Yet these are generally not the questions shaping the discussion, and in fact confusingly there appears to be at least 3 debates running concurrently about social care: how to finance the long term care needs of older people; how to support carers; and how to promote independent living for disabled people.

These debates should be one debate, one question.

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

Last Updated: 28 Apr 2014