Speech by Jane Campbell

26 February 2009

On the day, this speechwas delivered by Mike Smith from the Commission's Disability Committee.

Nicola has set out for us why the issue we are here to discuss is so central to the Commission's agenda. She also challenges us to choose the right path by instigating new ways of investing in and delivering what we call care and support.

I'm here to tell you more about the Commission's proposals for addressing these challenges.

The Commission has spent the last year or so talking to people who work, use, or are interested in the future of care and support. We wanted to know what individuals and families needed to flourish personally and collectively. We wanted to understand better how to address the inequity and discrimination that exists in public care and support services. And we wanted to do this in a way where the individual and family units would not feel burdened or a burden. Because let's face it, social care has always been viewed from the perspectives of vulnerability and burden.

Our vision and proposals, to which I now turn, will replace these outmoded notions of social care with a vision of care and support based on promoting life chances and well-being.

In the short time we have, I can't possibly do justice to the wealth of ideas and proposals in this report. But I do hope this introduction will encourage you to read the full report in detail.

So, our vision of a reformed approach to care and support is built around three core propositions.

  • The purpose of care and support is to build the capabilities of individuals and families;
  • This can only be achieved through encouraging and facilitating co-production;
  • And to achieve our ambitions we need to do far more to identify and communicate the cost benefits of care and support to society as a whole, to counter this notion of growing burden.

Now I will spend a few minutes talking about each of these in turn.

So our first proposition is that the purpose of care and support is to build the capabilities of individuals and families and first I will explain what we mean by capabilities in this context.

A capabilities approach is an approach to human rights and equality which focuses not simply on people's freedom from harm, undue interference or discrimination, but on what is required to accord them the freedom to flourish as human beings, ensuring they have genuine autonomy to shape a life worth living.

It is this basic idea which we have sought to capture in the title of our report ‘from safety net to springboard'.

The role of care and support alongside other public services is to enable individuals and families to achieve the freedoms and opportunities necessary to live the life they wish to lead.

Let me give you an example to illustrate the difference such a human rights approach would make in practice.

Imagine Mark, who has a learning disability. He might be at risk of being harassed or attacked if he goes out at night. Of course he could avoid that risk by never going out at all. But being safe is not an end in itself - it is what allows us to get on with the rest of our lives, doing stuff such as going out for the evening and enjoying ourselves. And of course doing so carries with it risk as I am well aware as a former risk manager at Price Waterhouse Coopers. But risk is an ordinary part of life - in many ways it is what makes us feel alive.

The capabilities approach allows us to think afresh about our approach by focusing us on the need to balance people's different rights and freedoms.In doing so it should also help local authorities and others negotiate the sometimes difficult questions about balancing safety and risk, and about the most appropriate strategies to address them.

The capabilities approach expressly recognises that people are not equally placed to realise their universal human rights and therefore require different resources and support to do so. So going back toMark we could help him to achieve the safety he needs by providing him with independent advocacy to help him make sound choices, or by helping him to overcome the isolation which may have left him in a vulnerable situation in the first place.

The full report gives many practical recommendations in this area. I'm going to focus now on just four of them.

First we believe the time has come for care and support to be predicated on a national framework of human rights-focused outcomes. Care and support should be targeted at helping us to build the capabilities we all need to lead our lives - to be safe, to be healthy, to be able to go to work, have relationships and take care of our families. And it should be measured against its success in helping to deliver them.

An individual's needs for care and support should be assessed against their own achievement of these capabilities. This should be available to everyone, irrespective of personal resources.

Consideration should be given to incorporating these outcomes in specific statute, in a similar fashion to Every Child Matters.
Every adult matters too.

Second, we need to identify and root out policy and practice which directly undermines the achievement of these freedoms.

Let us take one of the freedoms within the human rights act. Freedom of movement.

Due entirely to the way we organise social care within local authority boundaries, we still have what can look remarkably like the remnants of the Poor Law system of outdoor relief, paid for by parish rates (what we now call council tax). We lose our entitlement to help if we cross the parish (or local authority) boundary, have to be re-assessed and we will hit a different policy about who gets help and who doesn't.

What does this mean for people in reality?

Well Nicola has already mentioned the challenges it creates for people wanting to go to University. But it cuts deeper than that - we recently heard of two disabled people who went to school together, fell in love and wanted to move in together and get married. But because they lived in different counties it took them 8 years to get their care and accommodation sorted out. This situation denied them the freedom to marry and their right to family and private life. Would you want to wait 8 years to consummate your relationship?!

We propose a so called ‘portability duty' requiring local authorities to co-operate with one another to ensure effective transition between areas should people wish to move.

Third, it means tackling discrimination - human rights are universal.

For example, in preparing this report we were informed of many examples of what appears to be institutional ageism in our existing system of care and support. By way of illustration, the Commission for Social Care Inspection operates two standards for registering social care facilities for the over and under 65's. The registration requirements of the younger group include standards concerning supporting service users to engage in social and economic life. These standards do not appear in the registration requirements for services that support those who are over 65 years.

We will conduct research to pinpoint ageism across our health and social care system and bring forward recommendations for reform.

And finally, as public sector reform progresses, the boundaries between public and private provision will blur further. Equality and human rights law and inspection and regulatory regimes must keep pace with these changes.

We will work closely with the Care Quality Commission to help build a human rights culture across this mixed economy of care and support and to ensure compliance with the law.

By way of reminder our second major proposition is that this willonly be achieved through encouraging and facilitating co-production.

As Nicola has said, to get this right we all have a contribution to make.

We believe there is a need to rearticulate care and support as an issue relevant to the way we all lead our lives in the 21st Century, not just as a narrowly defined set of services or transactions for a minority.

We believe that individuals and families should be empowered to play a greater role in identifying their own needs and planning how these should be met.

The Commission strongly supports and was actively involved in developing the proposed ‘right to control' contained in the current Welfare Reform Bill. This has the potential to give disabled people the right to control the way money is spent on meeting their needs. We actively support the current proposals to develop personalisation in NHS Continuing care and in relation to services for families with disabled children and young adults at the point of transition from school.

But in this new world we are creating we need to consider how to avoid new inequalities emerging as a result of the different capacities of individuals to navigate the marketplace and to make the best choices to satisfy their needs. An effective framework of advice and information for all is critical. To ensure that these reforms deliver to those who would benefit the most, we must also invest in independent advocacy and we do mean independent.

The Commission will carry out research to map the availability and quality of independent advocacy across the country. Andwe will also evaluate and support innovative approaches to providing advocacy to the most seldom heard groups.

There are already important vehicles available to create this infrastructure. We need to harness the potential local area agreements, local strategic plans and comprehensive area assessment, not least the contribution of the voluntary and community sector, which cannot be left to chance.

User led organisations have a critical role to play but frequently struggle to stay afloat, so limiting their impact. Local authorities have a central role to play in assisting organisations to achieve important economies of scale and to be more efficient and effective.

More local authorities should also promote innovative new solutions to meet needs such as supporting time-banks in their areas to facilitate the voluntary giving of low-level support such as cleaning, shopping, gardening and basic home repairs and maintenance.

And finally, our third proposition - to achieve our ambitions we need to do far more to identify and communicate the cost benefits of care and support to society as a whole, to counter this notion of growing burden.

By the Government's own admission, care and support services have rarely been considered a social and economic investment. This is both short-sighted and dangerous to the well being of our society.

Short-sighted because all of us in this room are aware of the transformative potential of care and support in changing people's lives in ways which benefit society as a whole - effective care and support promotes good physical and mental health, enables people to enter and remain in paid employment, strengthens families and communities and helps us achieve other social objectives, not least equality and human rights.

Dangerous because without robust evidence of these cost benefits, care and support will continue to fail the rigours of invest to save tests set down by the Treasury and in the coming fiscal climate is unlikely to be able to compete for attention with other spending priorities nationally and locally. It will continue to be viewed primarily as a burden, without taking into account the positive impact good care and support can play in relation to other areas of public expenditure include health and welfare benefits.

The Commission will work with partners to begin researching the macro and micro social and economic costs and benefits of different options for reform and investment in care and support.

So...these are our three major propositions.

But of course there is an elephant in the room - and that elephant is called funding.

There is no one model currently under discussion which does not have attached to it risks concerning equity and fairness, and there is a need to strike a balance: there is no pain-free option.

It is clear that a one size fits all solution is unlikely to be found and that a range of options will need to be made available to suit the differing circumstances of younger and older people, those who have and have not been economically active, and so on - with the guiding principles at all times being to ensure that equality of access to support is maintained and that risks are spread fairly.

The Commission expects rigorous impact assessment of any funding proposals both in relation to equalities - including socio-economic factors - and intergenerational relations.

And as I have said many times, before we conclude the debate over how to fund care and support, we first need to have built a consensus around what it is we are asking people to pay for.

The report we are publishing today sets out a vision of a care and support system which we believe would be really worth investing in.

If care and support is truly to be a springboard to greater equality and human rights the challenge now is for the Commission, Government and all of us here today to promote this vision to society at large.

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