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Why are adult social care costs increasing?

The UK Government talks (constantly) about the reasons behind the increasing costs of adult social care. Undoubtedly we are all getting older, living longer, with larger numbers of older people requiring support from the statutory services. However, although the costs of aging are increasing, other sections of the population are drawing on the state for support in increasing numbers.

Every Local Authority must send data to the National Adult Social Care Intelligence Service (NASCIS) annually. Here the data are crunched, analysed, and published, both on their website ( as well as in separate publications.

Within one of their publications – Personal Social Services: Expenditure and Unit Costs – England 2010-11- Final Release, The Health and Social Care Information Centre, 2012, p 10 – is an illuminating table of figures. This table shows how much money is spent every year on adult social care for specific groups of people. I have added the annual increase figures to their table as follows. Please check my sums as I cannot vouch for their accuracy –

ADULT Social Care expenditure, England, all figures in £millions

Client group







People aged 65 and over







Annual Increase


270 = c. 3.2%

110 = c. 1.3%

310 = c. 6.5%

310 = c. 3.4%

50 = c. 0.5%

These figures are enormous (e.g. 9.4 thousand million UK pounds in 2010/11), and they do show an annual, year on year increase..

However the figures for younger people are also increasing as follows –

Client group







Physically Disabled Adults   (18-64)







Annual Increase


60 = c. 4.4%

60 = c. 4.2%

80 = c. 5.4%

90 = c. 5.8%

10 = c. 0.6%

The figures here are much smaller, but the annual percentage increases in expenditure are either about the same or slightly larger. This is only to be expected with smaller figures.

If we look at another group of people the figures are very different –

Client group







Learning Disabled Adults   (18-64)







Annual Increase


180 = c. 5.8%

160 = c. 4.9%

360 = c. 10.4%

200 = c. 5.2%

180 = c. 4.4%

The expenditure figures here are smaller again that the expenditure figures for older people. However the annual expenditure increases, expressed as a percentage are much higher – e.g. at 10.4% in 2008/09. This group of people represents the largest growth sector of any group of adults receiving adult social care provision.

The final group of people represents much smaller figures and much less annual growth –

Client group







Adults with Mental Health   Needs (18-64)







Annual Increase


10 = c. 0.09%

50 = c. 4.7%

40 = c. 3.5%

60 = c. 5.2%

0 = 0%

The story so far is as we’re all being told, with adult social care expenditure much higher for people aged over 65 than for people aged under 65.

However the category of ‘Over 65’ brings together everyone into one age band. This includes all people within this age, regardless of individual impairment or needs. The same is not true for people aged under 65. This group is disaggregated into separate groups by impairment type and identified individual needs. If we do the same thing for people aged under 65 as they do for people aged over 65 – if we included the separate categories all together – we arrive at the following figures –

Client group







Total for disabled people   aged 18-64







Annual Increase


250 = c. 4.5%

270 = c. 4.7%

480 = c. 7.9%

350 = c. 5.4%

190 = c. 2.8%

This suddenly presents us with a very different picture. Here is a bit of analysis of these figures –

–          The total figures for the older population (£9,440 million in 2011) are greater than those for the younger population (£7,070 million in 2011)

–          The annual rates of increase are much higher for the younger age group than they are for the older age group

–          All the annual rates of increase for people aged under 65, except for younger people with mental health needs, are the same as or greater than the annual rates of increase for older people

–          The consistently highest rates of increase relate to younger adults with learning disabilities (the highest rate of increase being in 2008/9 of 10.4%)

–          The difference in expenditure for younger disabled adults between 2005 and 2011 = £1,540 million, while the increase for people over 65 = £1,050 million


It is clear from these data that the highest growth in adult social care expenditure is for disabled people aged under 65.

Over time the overall total expenditure figures will get closer to each other. At this rate of increase the figures for younger disabled people will reach, equal, then exceed, the figures for older people. In Cornwall this has already happened (last year the over 65s expenditure = c.£80m, while the figures for people under 65 was c.£83m.

What does this mean for adult social care expenditure? Do the same programmes to help people live independently aged over 65 work with younger disabled people?

Are the needs of these 2 age groups the same/similar? Or do we need to think about how we can work with organisations of disabled people to build programmes to keep younger disabled people in work, living in accessible accommodation, with the community facilities they need, for as long as possible?

The Government is wrong – It’s not that we’re all getting older, it’s that adult social care is getting younger!

Let’s change the debate

Disabled people have traditionally been seen as a ‘drain’ on public resources. We are often portrayed in the media as ‘scroungers’, as adding nothing to the economy while we claim our benefits, staying at home. ‘festering’ (as Iain Duncan Smith said in May 2012 – It is possible to track this view of disability and disabled people right back in time, including to the Nazi eugenics movement, where disabled people were labelled as the ‘Useless Eaters’ ( 200,000 – 250,000 disabled people were killed in the concentration camps.

It is time to reframe this debate. There is already much work around Human Rights legislation, and on the need to treat everyone as equal. This work goes some way towards recognising us as equal citizens, entitled to the same things as everyone else – a place to live, a family life, work, income, etc.

However there is very little work in relation to disabled people and the money associated with disability and impairment. For example –

At the national level the Disability Industry (e.g. the big national charities) generates hundreds of millions of pounds, from a range of sources including public funding, charity fundraising, and independent grant sources. See previous blog for more on this. For example –

Scope has an annual income of about £100 million;

Leonard Cheshire Disability earns about £150 million per year;

Mencap earned over £190 million last year;


This money is spent on a range of social inclusion projects for disabled people across the country – at the national, regional and local levels;

On a regional and local level there are many hundreds of Disabled People’s User Led Organisations, generating income from various sources including national, regional and local government, independent grants and charity fundraising. This money is spent on a range of projects, many of which employ disabled people, and use disabled people as volunteers;

At the local level there is a range of resource implications from a statutory perspective, including Health and Social Care spending. This money is directed at the individual and service provision levels, and employs many thousands of people, disabled and (mostly) non-disabled; and

At the individual level, disabled people can receive a range of benefits, and other financial assistance, including Local Authority Direct Payments.

All these factors position disabled people as the controllers of many billions of pounds. This money can be controlled by the individual for a range of functions, all of which generate and produce money which is spent in the local economy. This money produces direct and indirect employment at the local level in a range of ways, including –

Local businesses (Small, Medium and Large Enterprises) directly serving the local disabled population, e.g. equipment providers, providers of specialist services, etc.

Local businesses which serve disabled people as well as the general public, e.g. food retailers, newsagents, etc.

Local Authorities, including Education Authorities, which provide services to increase inclusion for disabled people,

Micro-businesses e.g. disabled people who directly employ staff, including Personal Assistants,

Medical provision – there is a range of services targeted at disabled people, including rehabilitation, medical intervention and in- and out-patient services.

In short the amount of money circulating around, and generated by, disability and disabled people is huge. Without this money whole sectors of the economy, whole areas of the country, and whole professions, would not exist. It would be a relatively easy (though also relatively massive!) task to quantify this money, and to therefore demonstrate the massive, and valuable, contribution that disability and disabled people make to the UK economy.

Far from being a drain on resources, disability and disabled people keep many, many people in work and keep many parts of the community and economy flowing. In this way we can start to reframe the debate, to position disability and disabled people as making a positive contribution to the economy, to the skills and qualifications within the community, and to the notion of Society of which we are all a part.

A time for action!

I have briefly described a history of the UK disability movement in a previous blog. However I will revisit some of this history here.

In the 1970s disabled people began to self mobilise for the first time. What drew people together was not proximity – e.g. being located in the same residential home, or the same educational establishment, though this proximity did bring some groups of people together.

What united many groups in the 1970s was a sense of commonality of interest – e.g. a belief that disabled people could bring about societal change, to increase the inclusion of disabled people in employment, education and ‘regular’ neighbourhoods.

To achieve this equality of treatment and opportunity required political mobilisation. So disabled people self-mobilised.

The broader direction of travel of the disability movement has radically changed from the early, more militant days of disability mobilisation. The fight for a new, political understanding of disability galvanised early activity. In the 1980s this broadened to describe disability culture and the place of disabled people in society. There was a growth in disability arts movements, a rise in academic interest in disability issues with the creation of a new field of Disability Studies in universities, and a broader questioning of the representation of disability in the media, including film, radio and television.

There was also a questioning of the way disability services were created and delivered. New and innovative approaches were tried and tested, starting with the development of ‘Indirect Payments’. A Local Authority (LA) commissioned a Disabled People’s Organisation (DPO) to work with individual disabled people to recruit, interview and employ Personal Assistants. The individual disabled person would decide who worked for him/her, who came into his/her house, at what times, and for what duties. The service user became the employer.

This worked really well for the individual, the DPO, and LA. The project rolled out to a few LAs, the government noticed it and produced legislation to give any LA the power to give an individual a direct payment instead of a service. DPOs were not required within this Direct Payments process.

Disabled people and DPOs campaigned about the patchwork of Direct Payment service provision across the country. There was little or no consistency of provision. To the power was changed to become a duty – every LA had to provide direct payments to disabled people.

What happened next is interesting. The New Labour Government recognised this ability for DPOs to come up with good ideas to improve service provision locally. They therefore legislated for the need for every local authority across the UK to have a Centre for Independent Living (CIL) by 2010 – Recommendation 4.3 of the Improving Life Chances for Disabled People legislation.

When some LA areas proved unlikely to achieve Recommendation 4.3, it was modified to require that every LA should have a User Led Organisation (ULO) by 2010,.

DPOs became ULOs.

Over the next ten or so years much time, effort, and money, was produced to push an agenda driven to increase ULO involvement in LA provision. The Department of Health ran several projects to increase ULO capacity. The Disability LIB (Listen, Include, Build) Project was created by a consortium of ULOs, funded by the Lottery, to work with organisations across the country.

Direct Payments morphed into Individual Budgets, which mutated into Personal Budgets. It was envisaged that ULOs could secure contracts from the LA to deliver Personal Budgets, at great savings to the LA, while increasing service user satisfaction.

There was a real momentum. Small organisations turned into medium-sized organisations. Jobs were created. There was a whole new sub-sector within the voluntary sector appearing before our very eyes, with a valuable range of skills and expertise, managed and led by disabled people.

It felt like we were given a plan of how to build a shiny, accessible new car. We were trained to build this car, and provided with all the pieces we needed. When the car was built we were given petrol to put in the tank and a map of where to drive it. Along the way we were renamed as ULOs. It was a really exciting time of growth and development.

So we followed the instructions, built the car, drove it to a clearing in the forest where all the new, shiny contracts were going to be waiting to keep our lovely new car on the road, only to find there was nothing there.


The national government had forgotten to require the LA to do anything, but had merely suggested it. Some LAs dived in, entered into new relationships with their ULO partners, and started ‘co-producing’ new services, or new ways of delivering existing services. Some of these LAs did this and also saved money, while increased service user satisfaction. But many did not. They kept their services in-house, and carried on doing stuff ‘to’ disabled people, instead of ‘with’ them.

All over the country disabled people find themselves sitting in these shiny new ULOs, waiting for something to happen, for something to appear from their LA to get them moving again. Instead LA grants are vanishing – there’s no money anywhere. Contracts are not appearing as services are kept in-house to keep staff in jobs. And ULOs are down-sizing and disappearing. In London up to 5 ULOs are closing every month.

We need to get vocal about the journey we have in some ways been forced, or at least pushed/encouraged, to take. ULOs employ large numbers of disabled people, and include even more as unpaid volunteers. ULOs have access to large amounts of social and cultural capitals. The inclusion project is still in its infancy, but it is working at the ULO level. Disabled and non-disabled people work together to deliver quality services. Where LAs work effectively with their ULO there is increased access in local provision for the whole community – in all services provided by the LA (not just social care provision), as well as within the broader community.

We need action now to regain the momentum and to recharge the debate.

Institutional Abuse

Yet again there are allegations of abuse in a facility run for disabled people, this time by Cornwall Council – John Daniels Centre. In Cornwall we all remember the Budock Hospital abuse scandal, and last year there was the Winterbourne View case near Bristol.

What more is there to add to the various debates that have taken place about all these situations, and how can we help remove/reduce the likelihood they will happen again?

I’ll start by talking about the idea of social capital in its commonest forms, then apply these understandings to the causes of institutional abuse.


The notion of capital takes various forms, the most commonplace of which is economic capital. We all know how this works – you go into a shop, hand over some money in exchange for a newspaper/chocolate bar/toilet roll/etc.

Money is, itself, of no use to humans. Imagine washing up on a desert island with a crate of bank notes. Apart from burning it for heat, or to cook food, it is, in and of itself, no use at all.

How money works in a capitalised, monetary system, is that it is recognised as having worth (“I promise to pay the bearer, on demand, the sum of…” onUKbank notes). We can therefore trade it in for something more useful to us, by using shops. Without money we are reduced to barter.

There are other forms of capital as well as economic capital. Of particular political interest in the UKat the moment is the idea of ‘Social Capital’ . This is the idea that our social relationships have value, and can bring new resources into our lives that are useful to us.  For example we can hear about new opportunities through our friends and relations (the phrase ‘It’s not what you know but who you know that counts’ is relevant here).

There are at least 2 forms of social capital recognised in the literature. Here I will describe the ideas of Bonding and Bridging Social Capitals.

The Bonding type of social capital refers to the links we have with the people we are close to – e.g. our families, our close friends. Some organisations rely on strong, bonding social capital for their existence, and not all of these are positive organisations. The Ku Klux Clan has very strong bonding capital – the norms within the organisation are perpetuated internally because the relationships within the group are so tight. The adjectives used to characterise this organisation can include ‘secretive’ and ‘closed’.

Bridging Social Capital refers to the links we have with our broader community. These links have been shown to be very useful in bringing new resources into our lives (e.g. Mark Granovetter’s work in the 1970s demonstrating how weak, bridging social capital can introduce new work opportunities into peoples’ lives)..

Social Capital and Abuse

These ideas of the different forms of social capital can be helpful to understand how cases of institutional abuse can take place, and become ‘common practice’ in some places.

The institutions with the worst cases of abuse can be seen to have large resources of strong, bonding social capital within the staff group. The phrases they might use in the presence of new staff could include things like “This is how we do things around here”.

Bad practice might happen, and then, over time, escalate into abuse. Individual staff practice will be influenced by an overwhelming organisational ‘norm’ of bad practice. It is possible to see how bad practice can feed off bad practice, to create a spiral into horrific organisational behaviour.

When this strong bonding social capital is coupled with weak bridging ties to the broader community – with few, if any, visitors calling in unannounced, a culture of closed and locked doors, and few opportunities for inter-organisational staff interaction – then the situation can quickly spiral out of control.

And this is what we see when the doors are thrown open and abuse is disclosed. For Winterbourne View it was only through the hidden cameras of a TV programme that revealed what was happening. We are still waiting to hear more about the John Daniel’s Centre – the police are involved but little/nothing has come to light as yet.

A solution?

Of course the clearest way to reduce this kind of abuse is to close these places down, and provide quality, well-resourced services in the community. There is little political momentum for this at the moment, despite the rhetoric of the Personalisation agenda.

If these places do stay open – and there’s a lot of vested interests, including jobs, in maintaining the status quo – then one way of battling against the possibility of institutional abuse is to open the doors to outsiders. The Care Quality Commission operates on the basis of visits to these places, though how unannounced they are is open to question.

The greater use of disabled people’s organisations in the design/management/monitoring of these institutions could go some way to reducing institutional abuse. Unannounced visits, peer support, peer review, a role in the management of the service, and other mechanisms could be used to open these places up to a critical eye, from the perspective of a service user.

Social Care

A letter to the papers –

Dear Editor

Independent Social Services?

As you are well aware there is plenty of debate around Adult Social Care and related issues right now – how to fund it, how best to provide services, how to ensure consistent quality of provision across the country (and even across the county!), etc.?

In my mind Social Care should not be part of council service provision. Social care provision is not a council service in the same way as other things are council services. Social care is a human rights issue. It is our human right to be out of bed, dressed, working, in education, and out in the community, the same as it is everyone else’s right to do these things.

Imagine if a non-disabled, or a younger person, was put to bed by the council at 7pm every night, because it was a convenient time for the council rather than the wish of the person? (This happens in many Local Authority areas).

Imagine if a non-disabled or younger person was left in soiled clothes all night long – not because they were incontinent, but because there was no money to be able to provide a person to change their night wear if a change was needed. (This is a court case that a disabled woman just lost in Kensington)

Imagine if there were a shared house where it was ok to sit on non-disabled people, beat younger people, or lock people away, if they were not doing what someone wanted them to do at a particular time? (Winterbourne View)

As far as disabled and older people are concerned these things can happen. Right now, here in the UK. Not in Syria, where there is a civil war going on, but in the UK.

When council services are cut, we put up with fewer rubbish collections, or roads which are not as well maintained as they should be, or swimming pools which are not open as often as we might like. That is not to say these services are not essential services of course.

But for disabled and older people, council cuts can be much more threatening. For many people it might mean that there is not enough social care provision to be able to get up/go to bed when we want. We may no longer be able to afford someone to stay in the house all night to change our clothes if needs be. We may not be able to leave care establishments where we are beaten up, manhandled, and sat upon.

And what about the simple human rights to eat a hot meal every day? Or to be able to meet one’s friends and family when one wants to? Or to go to the gym to keep fit and healthy?

Social care needs to be independent of the council. It needs to be a separate entity, governed by national rules and guidance which can be enforced, adapted and changed to suit the needs of the local community. It needs to employ professional people, like it does at the moment, but professional people who are employed by a national body, not by a body regulated by local councillors.

In this new arrangement the local Social Care office would receive funding calculated according to how many people live in the area. From population data it would be clear how much money the local/county area should have. The local social care structure would follow a national model – x amount for management, x amount for service delivery, etc. – so it becomes clear how much money is being spent on what.

In this way the council could not, for example, decide to spend more money on the local roads rather than giving local people the human rights to which they should be entitled.

These are decisions that no-one should have to make, but which every local authority has to decide every year.

Let’s make social care a human rights issue, not a council spending issue!

Disability Political Mobilisation

The history of the disability rights movement in the UK stretches back to the 1970s. Tom Shakespeare pinpoints the ‘Year Zero’ as 1975 (Shakespeare, 2006:14), with the writing of the Fundamental Principles of Disability by UPIAS – the Union of the Physically Impaired Against Segregation.

The key members of UPIAS – Vic Finklestein, Paul Hunt and Paul Abberley – wrote the Fundamental Principles against a background where the societal response to impairment was to provide specialist segregated settings for disabled people – residential homes, special schools, segregated workplace settings, etc.

In 1983 Mike Oliver named the dominant societal disability discourse as the Individual, or Medical, Model of disability. In contrast he named the new definition the Social Model of Disability. I will explore some aspects of these definitions in a future blog.

For the purposes of this blog I wish to highlight three factors about this political activity –

  • The self-mobilisation of disabled people, into political groupings, started at this point. The 1980s saw the formation of groups of disabled people, from national organisations to the regional and local groups. Disabled people began campaigning for equal rights, for better access, and for a range of different things. Some of these groups were very angry, railing against the oppressive practices of non-disabled people, while others were more conciliatory, working with local authorities to deliver ‘better’ public services. The point here is that disabled people began to decide what it is that they wanted to campaign for, or against, and then to do it, without the involvement of non-disabled people;
  • The first fruits of this self-mobilisation was the creation of a new, political understanding of disability – the Social Model. This was the first time that disabled people themselves created a definition of disability. This self-definition and self-naming is an important political process, mirrored within other civil rights movements. It moves disability away from the bounds of medical discourse into the realm of political activity; and
  • In doing this, for the first time the notions of ‘disability’ and ‘impairment’ were separated. People with impairments can be disabled, or not, by the socially constructed world around them.

These three things, at least, demonstrate that we, as disabled people, can change things. The UK disability landscape is fundamentally different now from what it was in the 1970s. Without the anger, frustration, and vocalisation of disabled people themselves it is hard to imagine things would have changed in the way that they have. Many of us now live independently in the community of our choosing, with the people we want, controlling our own support packages. Not all of us are institutionalised and segregated away from the mainstream in the same way as we were in times gone by.

But there is still a long way to go. For some people this independence is still not a choice. Some people experience profound degradation, humiliation and even torture in the place they call ‘home’ – look at Winterbourne View and other recent ‘care home’ scandals.

It looks like things will get a lot worse in times to come. As budgets are reduced, the squeeze on Local Authority social care provision will increase. More people may well find themselves in institutions when they would like to remain living independently. The Hardest Hit in these tough times are disabled people.

The battle is not over, nor is it ‘won’. Not by any means. The question is how do we win it? I believe we need a mobilisation of grass roots disability political activity. We have shown what we can do when we are in control, and we have shown that by working with government – locally, regionally and nationally – we can make significant change.

There can be a friction between Local Authority service delivery, contracting and tendering and this political campaigning. But there is space for this activity. The key here is to mobilise on a regional and national scale. To bring together the voices demanding change.

Festive Cheer One and All.


Shakespeare, T. (2006) Disability rights and wrongs Routledge,London,UK

Disability Income/Expenditure

In my last blog I listed the incomes of several major disability charities. This is interesting as it begins to unpack the size of the annual Disability Market.

However it also limited in that it provides only a snapshot – a point in time. From a list of one year’s incomes figures it is impossible to tell whether these figures are unusual, or in line with income for the same organisations from other years.

It can also be interesting to compare the income for an organisation with the expenditure for the same organisation. If one does this for a particular year this provides a snapshot figure – a point in time.

However one can also investigate income/expenditure for one organisation, or for several organisations, over a period of years.

All the figures I will now present, except for the final column in each table, have been gathered from the Charity Commission website –

This is a useful resource. By entering the name, or number, or any particular key words you wish to search for, of any UK charity – large or small, local, regional or national – it is possible to peer through the annual returns for that organisation, including financial details, staff details, governing documents, etc.

The provision of this information to the Charity Commission is a legal duty for all UK registered charities. So there is nothing to hide.

Here are some income, expenditure and differential calculations for a random selection of UK Disability Charities. I have checked my sums, but please feel free to check them again. If you discover any discrepancies between what you find and my figures then do let me know – I admit to being fallible, human, and a bit quick to publish.

Any mistakes are honest mistakes, maybe due to my ham-fistedness with a calculator –



Income (A)

Expenditure (B)

Difference (A-B)





98.32 m

100.45 m

98.40 m

101.61 m

94.51 m

98.62 m

98.30 m

94.93 m

3.81 m

1.83 m

0.1 m

6.68 m


398.78 M

386.36 M

12.42 M




Income (A)

Expenditure (B)

Difference (A-B)





177.86 m

183.46 m

189.12 m

194.20 m

172.13 m

176.90 m

186.05 m

188.63 m

5.73 m

6.56 m

3.07 m

5.57 m


744.64 M

723.71 M

20.93 M




Income (A)

Expenditure (B)

Difference (A-B)





107.82 M

98.65 M

96.04 M

135.15 M

91.80 M

100.02 M

105.11 M

130.15 M

16.02 M

-1.37 M

– 9.07 M

5 M


437.66 M

427.08 M

10.58 M




Income (A)

Expenditure (B)

Difference (A-B)





49.21 m

49.84 m

46.84 m

47.26 m

49.28 m

45.87 m

47.88 m

44.63 m

– 0.07 m

3.97 m

– 1.04 m

2.63 m


193.15 M

187.66 M

5.49 M


If you total up the amount of surplus for each of these 4 organisations the figure is –


And this is during a recession.

Here are some questions to ponder –

Where is this money? And what is it doing there?

What would the total figure be if we did this same exercise for every UK disability charity?

How many Disabled People’s Organisations (DPOs) would this surplus fund?

If this money is not doing anything in particular – if it is just lying around somewhere, gathering dust – would these major disability organisations mind donating it to local DPOs? Imagine what a difference this money could make.

Millions of pounds….