I mentioned this speech which I delivered at a Carers UK conference in 2006 recently during a discussion on Twitter but couldn’t find it on-line. This evening I stumbled across it and have re-posted it below. At the heart of the argument is that a false distinction is drawn between carers and cared for and that the (still going on today) tactic of the Carers movement to claim to save the state billions of pounds is counterproductive for all involved.
6th December 2006, Royal College of Nursing
I’d like to begin by thanking Carers UK for inviting the DRC to address today’s conference.
You were supposed to be hearing from Gerry Zarb.
Gerry sends his apologies.
He is a member of the DWP’s Independent Living Review and they scheduled a key meeting today with the Minister for Disabled People and Minister for Care Services so he asked if I could step in.
And I have to tell you it was only after I agreed that I learnt that the issue Carers UK wanted us to address was ‘carers vs cared for’.
Gerry claims not to have known this.
Come to think of it I haven’t double checked that there is actually a meeting of the Review today….
…But it’s too late now!
So carers vs cared for…
..I could use this platform to start a phoney war.
It might be a good way to get some headlines:
‘Disability watchdog attacks carers lobby for oppressing disabled people’
And of course there are some in the disability lobby who would applaud me for saying that.
Who consider that lines have been drawn and who refuse to enter into dialogue with the ‘enemy’.
That is not the position of the DRC.
At the DRC we recognise that there is a critical difference between working to advance human rights and equality for all, and simply seeking to secure your own rights and opportunities at the expense of others.
We recognise that many carers are themselves disabled people, and that the life chances of disabled people will not be improved by impeding or failing to improve the life chances of those with who they share their lives.
We recognise that the pot would be calling the kettle black to berate government and public authorities for their failure to adopt a joined-up approach to public policy and services and then fail to do so ourselves.
So let me be absolutely clear before I go on:
The DRC believes that carers should anticipate an equal level of access to dignity and respect, freedom and opportunity as those who require support and assistance in their lives.
Carers and people who are disabled or have long term heath conditions share the same goal of securing choice and opportunity.
The DRC also believes many of the barriers faced are the same, and that while there may appear to be competing claims to recognition, power and resources, in reality the solution is the same.
It is on the task overcoming these barriers and securing this solution that I am going to focus today.
The DRC’s position on the rights and opportunities of carers
I want to start by setting out what DRC believes is required to advance the rights and opportunities of carers.
And I do so not simply because it seems politic.
But because we recognise that if there is a division between carers and cared for, most often it isn’t along the lines of disabled and non-disabled people.
Many people with mental health problems, for example, offer support at times of crisis to friends experiencing the same thing.
For example, very recently I was on the tube and I noticed an older couple being helped off the train by their daughter who had Downs Syndrome. There are 70,000 adults with a learning disability who live with parents aged over 70.
Discussion on that issue tends to centre on the support parents provide to their children. I suspect that in reality it is much more of a two-way street.
Many older carers have impairments and health conditions.
And for the most part in this discussion we are talking about the well-being of whole families, not just individuals.
Public policy must strengthen the capacity of families to function in a way that improves the life chances of all their members.
Disabled people’s life chances will not be improved if we do not improve the life chances of those with whom they share their lives.
How can we do that?
Well, first the DRC believes that caring responsibilities should be y recognised in future anti-discrimination law as a specific ground, a belief we share with Carers UK and the Equal Opportunities Commission.
A single equality act must generate a better balance between work and family life by widening opportunities for people to improve their social and economic well-being.
This is crucial to secure the prosperity and economic growth Britain needs in the face of rapid demographic and world economic change.
To support this aim DRC is also funding a discrimination case which will test whether cases of disability discrimination can be brought by non-disabled people on grounds of their association with a person who is disabled – in this case the mother of a disabled child who believes she has been treated less favourably by her employer.
We also believe there should be stronger rights to flexible working.
In time we believe rights to flexible working should be available to everyone.
In the short term we believe existing rights to request flexible working should be strengthened by making them available from the point of recruitment rather than six months into a job and by requiring employers not to unreasonably withhold consent to such requests.
Finally, and this is what I am going to focus the rest of my remarks on today, we believe that carers could benefit considerably from major reform and investment in our social care system.
As many of you will be aware, the DRC has worked closely on this issue of reform and investment with Carers UK and the Equal Opportunities Commission, both of which have supported Lord Ashley’s Independent Living Bill which the DRC helped write.
And to go back to the title of this speech, this is the area where perhaps the most difficult challenges lie and where historic divisions have kept those lobbying on behalf of disabled people and of disabled people apart.
From objects to citizens
I think it might be useful at this point for me to say something more about the position of some disability activists and why they have seen the interests of carers and disabled people in opposition.
The pioneers of the disability movement in the 1960’s and 1970’s including people living in institutions who had no choice about being there and no choice about what they ate, who they saw, what they did when they went to bed.
In some cases, the people who made that choice for them were their parents and they had no power to disagree or decide for themselves, even as adults.
Others lived outside residential care but not in their own home. They were unable to move out of the home of their parents or foster parents and again found themselves subject to their parents decisions.
These activists began to publicly reject the very notion of being ‘cared for’ because they believed that kindly sounding phrase was being used as cover for their incarceration, and the complete denial of respect, dignity and choice.
For the advocates of what later came to be called independent living the set of functions and activities we tend to call ‘care’ had become an end in themselves, and that end was mere containment.
Carers, whether members of their family or paid for by the state, were often viewed as oppressors.
As such, campaigns for greater recognition, rights and status for the function of ‘care-giving’, where they did not simultaneously try to secure rights to independent living for disabled people were viewed as part of the problem.
It can be argued that such campaigns actually stand in the way of disabled people securing full citizenship which hard-pressed carers themselves – through no fault of their own I hasten to add – are unable to guarantee with the current social care settlement.
Many felt the Mental Capacity Act was a positive development, which clarified disabled people’s rights to self-determination. . Others consider it oppressive rather than liberating, primarily because it lacks rights to independent advocacy which would put greater control into disabled people’s hands.
I have given an extreme account of how some disabled people have viewed carers as in direct competition for rights and resources. I should say that the DRC’s Learning Disability Action Group overwhelmingly view family carers as strong allies and facilitators of their rights.
It is important to consider the power balance in some caring relationships which may not bear the hallmarks of oppression as the more extreme cases and may not be all that common.
Yet some people do feel that they have little control or power than to do anything but accept the bear minimum offered to them. For example, I learned recently of someone whose neighbour received Carers Allowance to provide support to her and yet she was not happy with the support she received – what was she able to do about this?
We believe where discord exists it is a product of the settlement we currently have – the current system is so limited and rights and entitlements so threadbare that different groups are forced to fight their own corners to compete for attention and resources.
Much of public policy as far as disabled people are concerned remains founded upon notions of care, welfare and charity rather than rights, opportunity and citizenship.
We have had over a decade of developments in disability discrimination legislation – an acceptance that disability is a social rather than medical challenge.
Yet our welfare state – from the benefits system through to social care – remains stubbornly rooted in an approach which undermines rather than aids the progress towards equality.
Support where it exists too often fosters dependency and does little to aid well-being.
For many it doesn’t exist at all.
In England for example almost 70 per cent of local authorities social services only deliver any support at all to those with the very highest levels of need.
The Commission for Social Care Inspection has just reported that 3 local authorities are now only providing services to those deemed to be in ‘critical’ need – with more authorities seeking to do the same.
Since 1994 the proportion of older people receiving home care has almost halved as resources are focused on those with the highest levels of need.
Clearly this isn’t just the concern of disability activists.
This situation creates a huge reservoir of unmet need.
And just as public policy on social care rests on outmoded assumptions concerning the place of disabled people in society so it also rests on increasingly outmoded assumptions about the capacity and willingness of others to fill the gaps
And it is here I believe that the interests of the cared for and the carers really collide.
Millions families and individuals are often struggling to provide support at great expense to their well-being for millions of others who would choose something else were it available
Were there an alternative, I believe we would all welcome it. .
A democratic mandate for change?
Earlier this year, the DRC, Carers UK and the Equal Opportunities Commission and Carers UK commissioned a survey of the British public’s attitudes and expectations of social care.
It found that people have high expectations of the support available should they become disabled.
90 per cent want to be supported to stay at home; 83 per cent want support to visit family/friends; and 78 per cent want support to take part in local activities.
Women are still expected to provide more support than men; but a third of both women and men say they are unwilling or unable to provide informal support now – or in the future.
I think most of us here know enough to know that those expectations could not be met within the current system.
But there is an appetite for change. Those polled were willing to pay higher taxes for better social care by a ratio of 2:1.
Amongst higher earners there was even greater support.
In our ageing society I believe the question of ‘who cares?’ is one of the big three alongside environmental and security concerns for any political party looking for electoral success.
The chance for us now is to work out what it is we want, and to develop a new and compelling case for achieving it.
And I believe by coming together we have the capacity to provide both a new account of the shared costs we face and to chart the potential shared benefits for carers, the cared for and the whole of British society of a new settlement on social care.
The costs of inequality
So what is the cost we face and why is it important to define it?
The shared cost is disadvantage and inequality.
And this costs not just the individuals and families concerned, but society at large.
It is critical that we define these costs in this way, because otherwise the change and investment we seek is not viewed as a solution, but just another problem to add to the pile.
The cost includes the poverty which blights the lives of disabled people and those with who they share their lives.
There are twice as many disabled adults in poverty than non disabled adults.
One in three children in poverty has a disabled parent.
Amongst Bangladeshi families where there is a disabled parent the risk of child poverty is 83% compared to 36% in white families.
Many carers live in poverty, including many women who spend their retirement impoverished because they have provided unpaid care earlier in life, often not by choice but because statutory services were not available.
Many rely on benefits as their primary source of income.
This continues to have a marked impact upon gender equality, most keenly felt in relation to incomes in retirement, but also in respect of pay and advancement during women’s careers.
Many mothers and carers work part time for low pay – they cannot find higher productivity work that they can combine with family responsibilities.
Around half of all people paid less than £6.50 an hour are women who work part-time.
Nearly 4 in 10 carers providing 50 hours of support or more a week have never worked or are currently unemployed.
A recent report by the charity Barnardoes calculates that there are 175,000 young people – many between the ages of 13-15 providing substantial levels of care to their parents or other family members.
Their social and academic development suffers as does their health.
To allow this situation to continue strikes us as indefensible.
Adults caring 50 hours or more a week are twice as likely to be in poor health than those not.
Many young carers develop mental health problems – and it should be noted that of all new claims for Incapacity Benefit, mental health as the primary reason has risen from 1/5 of new claims in 1997 to 1/3 in 2005.
The cost of residential care has risen steeply in recent years, partly in response to rising expectations and standards.
For example in Scotland the average weekly cost of residential care for people with a learning disability rose by £100 between 2003 and 2005.
And the availability of home care has, as I said earlier diminished considerably.
Of course, alongside the impact on carers’ work opportunities, the way that social services support is, or rather often isn’t, offered means that no paid work is possible for the person requiring support.
As a consequence, the situation we find ourselves in impedes prosperity and economic growth.
And we know, as our society ages,many more will be in a similar situation without radical change.
And how do carers feel about their lot?
Well according to Princes Royal Trust for Carers over half have felt like walking away from being a carer. A recent survey found that:
71% of carers said they were stressed
83% of carers are frustrated by their caring role
More than half feel overwhelmed, angry, depressed and taken for granted
4 in 10 carers feel they never had a choice in deciding to care
About a third feel sad about the loss of the previous relationship they had with the person they now care for
It is clear to me that disabled people are carers have a common interest in turning this situation around.
It is also clear to me that together we can make a powerful and compelling case for investment and reform.
Escaping the black hole
But first there is something we have to deal with.
I have just spent 5 minutes charting the enormous costs to individuals, families, society and the economy of maintaining the existing status quo with the hope that we can begin to build a new case for investment in adult social care.
But chances are this will all be drowned out.
Because the Carers lobby has inadvertently created a huge black hole at the centre of this policy galaxy.
And what is this black hole?
It is the argument that carers provide a service free of charge of the same, if not greater, financial value as the NHS.
An argument raised to gain recognition and secure access to resources.
An argument that has played a part in securing rights to flexible working, tax credits, assessments and in relation to pensions.
As a political tool we can admire it, but equally it is an argument which says two things to any Government:
First, don’t ever seek to replace what carers do with statutory services – an utterly unaffordable option.
Rather, make it a bit easier for them to do and seek to lessen the impact
Second, their voice is politically more important than the people requiring the support and so it is around them that we should build policy.
Both outcomes of course undermine the campaign for investment in independent living services to which I referred earlier.
I am also unconvinced the savings argument is helping to achieve what carers really want.
In preparing this talk today I Googled the words ‘childcare and public investment’ and I got about 10 pages of links.
Was it the financial value of the childcare parents provided which won the case for investment in childcare?
Was it the fear that parents might walk away from their responsibilities?
No – investment in childcare came to be seen as a politically attractive investment because the case was made that it would widen opportunities for parents and in particular mothers to work, reduce the benefits bill, improve the life chances of children, alleviate child poverty, extend prosperity and promote economic growth.
What’s more, it would be popular amongst important sections of the electorate – and in particular women.
What had traditionally been seen as a private family matter became a major issue for public policy.
In short – the costs of the status quo were spelt out and the argument in favour of public investment won the day.
That is how Harriet Harman and others managed to secure the commitment of the Chancellor – once understood in this way he couldn’t get enough of it.
I then Googled the phrase ‘adult social care and public investment’.
And I got nothing.
Adult social care is not, unlike childcare, regarded as an investment.
It is seen as deadweight expenditure – a cost and nothing much else – no real outcomes are foreseen and no real value is attached to it.
This brings into question whether the modest gains made on the back of the argument that carers save the state £57 billion a year are in fact a product of the Government’s genuine recognition of the value of what carers do….
….Or simply an expression of relief that they do it.
Just as pity for disabled people had unhelpfully shaped responses to them, perhaps gratitude is a similarly harmful response to the situation of unpaid carers?
A new model for social care in a 21st Century welfare state?
So, if we share an interest in reform and investment in social care, are we are able to come together to make a new case for change?
And how might this look?
The DRC believes social care needs to be re-modelled around the principles of independent living.
The primary measures of success would be the choice, control and participation both those requiring support and those with whom they share their lives were able to achieve.
The Independent Living Bill which the DRC helped Lord Ashley to write safeguards to ensure that decisions made about support for disabled people should not be to the detriment of other family members or carers.
The DRC believes there should be minimum outcomes, at least equivalent to those for children under the Every Child Matters outcomes.
We believe government – national and local – should be required to produce strategies demonstrating how they will promote independent living and meet these outcomes.
We seek to extend choice and control through expanding access to independent advocacy, introducing self-directed assessment and promoting a navigator model for social work.
The degree to which choices are met should be a core area of local authority performance measurement.
So should measuring the degree of control people have and how easy they find it to take part in family, social and economic life – as parents, active citizens, workers, consumers.
We support individual budgets and want more such initiatives to help people assume greater control and gain greater flexibility in the services they use.
We believe people moving from one part of the country to another should be guaranteed their support package in the area they move to, at least for a fixed period before re-assessment.
We believe families should be offered mediation where disagreements emerge between members.
For example where a person is refusing an assessment to accept support from anyone other than a family member who is unable or unwilling to do so.
This is a clause in the Independent Living Bill which was developed by the DRC with Carers UK.
That is the model we seek and we believe it chimes with the vision politicians of all colours are beginning to chart out for a 21st century welfare state. One which:
Delivers dignity and respect
Extends choice and control and fosters independence
Expands opportunities for people to work when they can and or to play an active part in the life of their communities
Improves health and well-being
Invests to save – for example by preventing poor health, welfare dependency or admission to residential care
Is ‘joined up’
Provides value for money
And contributes to economic growth and widening prosperity
I believe we can together make a case as powerful if not more so than the one that has secured childcare as the ‘new frontier of the welfare state’.
Carrying forward the debate
I expect some of the things I have said today you may have found challenging.
I expect there are things I said today for which there are equally powerful counter-arguments.
Whatever you have thought, I am still glad I have had the opportunity to have this dialogue with you, and I hope it will develop and continue through the remaining life of the Disability Rights Commission and into the life of the new Commission for Equality and Human Rights.
We stand to gain far more from talking than from not doing.
And I would like to set a particular challenge today for the new Equality 2025 advisory group of disabled people to be announced by the Minister for Disabled People Anne McGuire tomorrow.
This group has been set up to assist Government with the process of expanding disabled peoples life chances by providing advice through the new Office of Disability Issues.
It is a powerful expression of the principle ‘nothing about us without us’ – of the direct involvement of disabled people, absent for so long, in policy making.
My challenge for that group is that it joins this debate, recognises that there need be no conflict between the interests of carers and those requiring support – between disabled people and the family and friends who support them.
Before I close I want to show you a short film produced by the DRC as part of our ‘Are we taking the dis?’ campaign.
It ran in cinemas earlier this year.
That film is based on a real case which came to the DRC’s attention last year of a couple who were forced apart when the husband was no longer able to provide the support his wife required and social services were unwilling to support in the place they wished: their own home. They both suffered as a consequence. He fought and won and they are now back together
The reason I wanted to show you that, is because we musn’t ever forget that fundamentally this debate is really about people and relationships.
It is about the shifting nature of interdependencies which exist in families at different points throughout life.
Between mothers and daughters, daughters and mothers, wives and husbands, husbands and wives, sons and fathers, fathers and sons, brothers and sisters.
…Between us and those with whom we share our lives.
…and that includes disabled adults who have received support throughout most of their lives who become givers of care as their parents age, they have children of their own of friends that they help.
One day the question of ‘who cares?’ affects us all.
And we have somehow to harness that fact and use it to build popular support for reform and investment in public services that promote the dignity, well-being, and independence of everyone involved.
Which recognises that this is not a matter of ‘carers’ or ‘cared for’.
It is about all of us, whatever side of the coin we find ourselves on.
The investment and reform I have proposed today is an investment in all our lives.
I hope we can work together to turn these ideas into reality.