Speech by Nicola Brewer

On 26 February 2009 Nicola Brewer, the Commission's then Chief Executive spoke at the Westminster Health Forum, where she and Baroness Jane Campbell, Commissioner, were due to launch the Commission’s social care report: From safety net to springboard: reforming care and support to promote equality and human rights

Transcript of the speech

Good morning. It’s a great pleasure to be here.

My role in this joint appearance with Jane this morning is to set out the Commission’s vision for care and support and the principles we both believe should underpin effective reform. Jane will then say more about what success might look like in practical terms.

I want to start by saying something that bears repeating: care and support is at the heart of our mission at the Equality and Human Rights Commission - I know the human heart has four chambers, but ours has three: human rights, equality and good relations.

Care and support is a matter of human rights, because it’s about our basic freedoms and how we live our lives. As Eleanor Roosevelt said, universal human rights start in small places, close to home. Nothing is closer to home than care and support.

Care and support is a matter of equality, because everyone needs equal access to effective care, and because everyone needs an equal opportunity and freedom to get on with their lives, with the practical means to pursue their own goals and aspirations.

And social care is a matter of good relations, because the right care and support services help us to be the good families and good communities that we want to be, rather than the over-stretched, strained and conflict-ridden families we risk becoming when we don’t have enough of the right kind of support.

It’s because this is so central to what the Commission is about that we’re adding our voice to the current debate on reform. Today, we're launching our report: From Safety Net to Springboard.

In it, we've focused on five key questions:

  • How properly to ground care and support in a human rights framework and in consideration of the practical implications of specific rights, like privacy, family life and freedom from degrading treatment.
  • The report also looks at the need for a new deal on advocacy and capacity building to support the individual payments model in care and support, which we can contribute to through our grants programme.
  • Next, the report considers the need to challenge discriminatory aspects of the present social care system, particularly those related to age.
  • The report looks at portability – new support for people so that they can move their care packages around the country.
  • And finally, the report considers some of the key funding issues around new insurance models and co-payment for longer term care and support.

Jane will say more about each of these propositions. I’d like to share with you a few of the questions we have asked ourselves and the actions we as a Commission will take in the months and years ahead:

  • We all know we're facing escalating demand for care and support and that we must find a sustainable way to fund it. But shouldn't we be focusing just as hard on the wider social and economic benefits and opportunities that the right system of care and support could open up? An effective response will help us to avoid the costs associated with poverty, benefit dependency and long-term ill-health, and it will also help us to unlock reserves of untapped potential and prepare for the economic recovery that will come.
  • Secondly, there is widespread consensus around personalisation, a system that works for the individual, and this is very good news for promoting human rights.  But this shift also challenges us to ensure that the benefits of reform are distributed fairly.  We need to make sure that inequalities aren't widened by the fact that some individuals have better capacity and more resources to navigate the marketplace. Those currently with the least choice and control in their lives should benefit the most from these reforms, but they will need added support to do so.  That's why we commit to producing an 'advocacy map' of Britain, revealing the best independent advocacy services across the country and working with our partners to fill the gaps where they exist. It shouldn't be a postcode lottery.
  • And in 21st Century Britain, there is no room for approaches reminiscent of the Poor Laws, as Jane will argue.  It's why we want to persuade local authorities to look at the issue of 'portability' afresh and create a new compact which doesn't trap people in one 'parish' because the system finds it easier that way. People need to be free to move home without fear that their care package will be taken away, or that they'll have to fight a bureaucratic machine to keep it. I heard of a story recently from the National Union of Students' Disability Officer about students' struggles to get adequate and consistent care when they go away to study, and move in and out of halls of residence, because of the number of different local authorities involved. It can leave students unable to leave the house in the morning, or be left hungry because they don't get a dinner time call.
  • So this agenda is as much about young people as it is about our older citizens. But as age discrimination comes to the fore in the wider equality debate, isn't there also something inherently contradictory - not to mention discriminatory - about a local authority having an explicit policy of reducing the approved hourly rate for personal assistants when a person reaches 65, or of inspection criteria for younger people focusing on opportunities for social and economic participation, but no such aspirations for older generations?  There is no valid reason for these discrepancies, but at the moment they’re lawful, because there is no legal duty on public authorities yet to promote equality on the basis of age.

None of us can escape the economic backdrop we're working against - recession, rising unemployment and increasing national debt. Any overhaul of our care and support system has to be affordable and sustainable. Our job is not to make detailed recommendations on funding. But we can, and do, propose some guiding principles for decisions about long-term investment in social care:

  • Firstly, the principle that those with the fewest resources should gain the greatest help.
  • Secondly, the need to balance the increasing demand for formal care with affordability and, critically, fairness.
  • Thirdly, the need to avoid false economy, recognising that inadequate short-term proposals will lead to more costly long-term solutions further down the line - costs which will be borne by the NHS, by increased welfare payments and by increased social and family breakdown.

Looking ahead, we face a choice about which path to take.

Do we take the path of least resistance, which means tinkering around with the current system, adding a few services here and there but working to the same basic assumptions?

Or do we, to paraphrase the American poet Robert Frost, take the path less travelled by? The path that offers us a radical overhaul of the whole culture of how we deliver care and support; the path that sees a reformed approach to care and support as a springboard for a better way of living, not just a safety net; the path that opens up whole new possibilities about how we might live as individuals and as a society?

We advocate the path less travelled by. But to take that path, we need to challenge some prevailing assumptions.

We need to challenge assumptions about what it means to be an ageing society. Some of the stark statistics are becoming familiar.  But we need to think through what they mean for the way we live.  We now have more people of pensionable age than children under the age of 16 (see endnote 1). There’s a tendency to become quite apocalyptic about this; to see demographic change more as a time-bomb and less as an opportunity.  Particularly when all we see at the moment are economic downside risks.

We need to be prescient, yes, but not pessimistic. Shouldn't we address this as we would any other question of social and economic management, alive to the possibilities and opportunities it could present if approached in the right way, from the right path?

When we talk about our ageing society we rarely discuss the economic potential of older people, many of whom can and want to work beyond retirement age; we rarely mention the fact that 82 per cent (see endnote 2) of childcare in this country is provided by grandparents; and we tend to overlook the fact that many of the over-65s we’re talking about will be healthy, many still relatively wealthy, and fiercely independent for years. Not everything will be rosy when our society is greyer, but it can be more of a boon than a burden if we restructure our services to adjust to our new reality.

A second assumption we need to challenge is about what it means to be disabled. When baby boomers were young, disabled people were viewed largely as dependents. That wasn't true for me, but I was lucky to have a mother who may have had MS, but who taught me that there was no such word as 'can't'. People are now more open, more aware and more informed about disability than ever before. Take, for example, the way people have responded to news of a campaign by a few parents to have the BBC remove Cerrie Burnell, who was born with only one hand, from her role as a presenter on CBeebies - hundreds of entries on both the BBC and Daily Mail websites expressing dismay at such attitudes and saying how important it is for children to encounter such diversity. For me the issue isn’t the 9 parents who complained but the 900 parents who said they were wrong. That shows a real and positive change in social attitudes.

If we're frank, institutional attitudes to disability have not kept pace with public opinion. Personalisation is the buzzword of the public service agenda. But as anyone who has tried to access care and support will tell you, the machinery still struggles to see disabled people as the real experts in their own situation; to understand that no one is in themselves vulnerable, although inadequate support and external factors can make them so; that one size does not fit all.

I’m reminded of a story that we’ve included in our report published today about a young man with learning disabilities who wanted to speak to his care worker about being gay. He was hoping for information. What he got instead was a psychiatrist and a risk assessment – his specific questions left unanswered.  Hardly an approach that recognised or respected his autonomy and self-possession.

And perhaps the biggest assumption we need to challenge – not to deny, but to explore - is about the preparedness of family, friends and the community to provide informal care. Vast numbers of middle-aged women, and to a lesser extent men, are facing the prospect of caring for one or both of their parents at pretty much the same time that their children are hitting teenage years or leaving home. Most of those potential carers will also have jobs to hold down, mortgage payments to cover, higher education costs to pay for, as well as retirements to plan.

Much more genuinely flexible working, what some people are starting to call agile working or even a new 'ism - 'flexibilism' - would help to make it possible for many of us to provide informal care in the short-term. But treating flexible working as the panacea risks institutionalising the current over-reliance on informal care networks.

At the moment, over 70 per cent of local authorities provide services only to those whose needs are considered ‘critical or substantial’ and the rest are left, with their families, to go it alone (see endnote 3). The care system is being heavily propped up by individual good will and spouse or filial love and duty, and that has to change. Not because there is no role for informal networks of care. A good society is one in which we are good families and good friends and good colleagues. But being a loving wife, husband or child should not be too heavy a burden to bear. We’ve come to a place where many families feel that it is, because they are being stretched to breaking point.

It’s creating conflict as well as undermining some of our most basic rights – to privacy and family life, to take part in our communities, to health and wellbeing.  And that threatens the quality of life and the human rights of people who are cared for.

In the report we're publishing today we tell the story of a daughter who placed her mother in a care home because she had severe dementia. It was a very difficult decision and she was desperate to make sure the staff treated her mum as the person she knew. She told the manager that her mother didn't take sugar in her tea, so was shocked when a few days later she saw staff heaping two spoonfuls of sugar into everyone's tea, including her mother's. When she reminded them of her mother's tea drinking preferences, she was told that it didn't matter because her mother wouldn't know anyway. It may seem like a small thing - but I know how I would feel if it was my mother.

There isn’t one path that’s better for carers, and another that’s better for those of us who need care. It’s not a zero sum game, just as equality isn’t a zero sum game. Isn't it possible to find a way to reconcile the interests of both, especially as more often than not it's more like the circle of life than a one way street?  Throughout our lives these relationships of care change - we are cared for by our parents, then may care for our own children, then for our parents and in turn we may be cared for by our own children.  Remembering that human sequence is a good way to choose the right path and to think through the kind of support we all would like to receive along the way.

We all have a contribution to make and a benefit to reap. This is about all of us. We need a society that is well-equipped to deal with that reality. And on that cooperative note, I’d like to hand over to Jane.

Read Jane Campbell's speech.

Endnotes

  1. ONS
  2. The Grandparents Association, October 2008
  3. Fighting for a slice, or for a bigger cake?, lecture by Jane Campbell at St John’s College, Cambridge, 29 April 2008

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