Tuesday, 12 February 2019

Communication - a fundamental human right



[Cartoon reproduced with kind permission of Angela Martin]

This was first published as part of the first Rightful Lives online exhibition in 2018.

Communication: Everyone’s human right

Communication is a fundamental human right, embodied within Article 19 of the 1948 UN Convention on Human Rights (and incorporated into UK legislation via Article 10 of the European Convention on Human Rights and the Human Rights Act 1998). Article 21 of the 2006 UN Convention on the Rights of Persons with Disabilities confirms “the freedom to seek, receive and impart information and ideas on an equal basis with others and through all forms of communication of their choice”.   This right is therefore not just for people who communicate using the dominant forms of communication but for everyone, regardless of their particular level of understanding or type of communication.  Most importantly, as Sharynne McLeod, Professor of Speech and Language, has written,  “Everyone should uphold others’ right to communicate as they interact with people in daily life in order to enhance equality, justice and human dignity.”

When this right is not protected and promoted it can lead to a denial of other human rights, including the right to freedom from “inhuman and degrading treatment or punishment” (Article 3 of the European Convention).  This is an absolute right and the European Court has ruled that it is held “irrespective of a victim's conduct”.

Ultimately the denial of the right to communicate can lead to denial of the right to life. This has become increasingly evident from reports and reviews about ‘preventable’ deaths of people with learning disabilities and/or autism.

Pain is our bodies’ way of telling us that something is wrong - it’s a warning system that prompts us to seek diagnosis, advice and treatment.  But what if you have a level of cognitive impairment which means that your articulation of your pain occurs not through telling someone about it in words but through a different means of communicating, including how you behave.  What if your communication is not recognised, is dismissed as ‘challenging behaviour’, is belittled by a belief someone other than you ‘knows better’. 

A denial of this fundamental human right to have your communication recognised is at the heart of understanding why, in Sara Ryan’s words, a label of learning disability” is synonymous with “a diagnosis of a life limiting illness” - on average, learning disabled men die 23 years younger than their non-disabled peers while women die 29 years younger.  This is the finding from the first annual report of the Learning Disabilities Mortality Review (LeDeR) Programme.  

That report found that:

Several reviewers commented on the importance of health care staff being aware of behaviour as a means of communication, for example:
‘Acute services need to be supported in recognising the needs of patients with learning disabilities in their care, particularly people with communication difficulties who may present with certain behaviours as a mechanism to communicate.’

In one instance of a preventable death, the reviewer “reported that although the person with learning disabilities relied on those who knew his individual and communication patterns well in order identify his needs, they had no way of sharing this key knowledge with others supporting and caring for him”. Another reviewer drew attention to the need to ensure that  “front line practitioners are aware that changes in behaviour and mood can be a sign of an underlying medical condition.’”

It’s not as if the advice and resources are not available to the medical and nursing profession.  The General Medical Council provides advice and resources for doctors about communicating with people with learning disabilities, while an article in the Nursing Times nearly 20 years ago warned against the tendency to interpret pain and distress as ‘challenging behaviour’: 

Imagine feeling severe pain and not understanding what is happening, nor even being able to ask for help and information. That is frequently the case for people with profound learning disabilities who cannot communicate verbally. Yet when distress and anxiety alter their demeanour, it is often dismissed as 'challenging behaviour' until the illness causing the pain reveals itself in some other way.

Yet despite such evidence of knowledge and understanding it is still possible for a mother of a learning disabled teenager to find that not one member of staff with whom her daughter came into contact during admission for treatment attempted to find out how she communicated, or how she was feeling. As Rachel Adam-Smith wrote

The hospital appears to lack the interest to ensure all patients have the ability to communicate their needs or to introduce themselves to those with communication issues. Lack of training and ignorance perhaps about the needs of the person they are caring for. Disabled children do have feelings, can feel pain and have the ability to think. Unfortunately, no one ever asked me about her communication needs.

It’s also not as if we didn’t already know that people with learning disabilities are dying needlessly - or that difficulties with communication may not an important factor in the failure to provide timely and adequate treatment.  The Confidential Inquiry into the premature deaths of people with learning disabilities, published in 2013, found that “30% had limited verbal communication, and 22% did not communicate verbally at all”

In June 2018 the NHS England published Learning Disability Improvement Standards for NHS Trusts, asserting “We all have human rights; and people with learning disabilities, autism or both have the same rights as everyone else.”  This is an encouraging statement but, disappointingly, amongst the rather bureaucratic jargon used in this document there is no mention of the importance of staff developing skills which enable them to understand what people are communicating.  There is the usual nod to “accessible information” and a reference to “modified communication” but nothing that would convey an understanding of what is expected of staff if they are to be able to understand when someone is communicating pain. 

Many years ago, when I was involved with training social workers on incorporating a social model of disability into community care assessments, we tried to get them to reframe what is usually perceived as some people’s ‘inability’ to communicate. We took sentences commonly used in assessments and asked them to reword them to cite the ‘problem’ as being theirs rather than the person’s they were assessing.  These are the kinds of things they came up with:

He can’t speak.
I’m not used to talking with someone who uses a communication board. I need to get some practice.

She wouldn’t be able to tell us what she wants
I don’t know how to enable her to communicate with me. I need to find out.

He has a speech impairment.
I’m not used to talking with someone with a speech impairment. I need to spend more time with him. I need to not be afraid of saying I don’t understand.

He doesn’t understand what I ask him.
I’m using unnecessarily complicated words and sentences. I need to simplify my language.
I’m using the wrong method to find out his views. I need to find other ways of finding out what things feel like for him.

It’s a seemingly small thing but changing the nature of the problem is the first step to acknowledging and respecting the most basic human right to communicate.  Instead of the problem being located within the person with learning disabilities and/or autism we need to see it as the responsibility of all of us to recognise different methods of communication, and to seek advice and help from those with relevant expertise, most importantly from those who know the person best.

It is only by doing this that everyone’s fundamental human right to communicate, their right to freedom from ‘inhuman and degrading treatment’ and their right to life, can be protected and promoted. 



Wednesday, 19 December 2018

The real problem with Universal Credit

The problems with Universal Credit are not the result of 8 years of ‘austerity’ - though they have undoubtedly been made worse by significant cuts in the budget which have yet to be fully restored.  Instead the hardships caused - the poverty, debt and homelessness -  are a culmination of a series of attempts by governments of all persuasions to bring about a profound change to our society.  Universal Credit is part of a set of policies which, as the recent United Nations report on poverty in the UK concluded are a result of “a commitment to achieving radical social re-engineering”.

Pressure to make changes to the processes involved in claiming Universal Credit are gaining support - the latest being a campaign now being waged by The Sun newspaper (a development which shows how bad things have become).  But whatever the problems identified by journalists, claimants and charities, the government has one response:  Universal Credit is designed to “help people back into work”. 

It is this common response which indicates that the problem with Universal Credit is not the detail of how the system works - however valid the criticisms are - it is with the ideology which drives it.

This ideology is simple but has devastating consequences: Universal Credit is the result of a set of beliefs that insist that individuals can only rely on themselves and their family for support; and that it is only paid employment which will provide the necessities for survival.  What this means is that the concept of social security has no place within what our welfare benefits system has become.  Our government has dispensed with the idea of a society where everyone has the security of knowing that, if they are unable to get the resources they need for survival themselves, then the collective resources of our society will step in to provide a safety net.

Nothing illustrates this more clearly than reports that some people who are terminally ill are expected to go for an interview with a Work Coach as part of their application for a benefit which they need precisely because they are ill and not able to work.

The fundamental problem is that - over a number of years - the welfare benefits system has been reconfigured in such a way that it is no longer designed to recognise an inability to work. It is no longer designed to recognise illness or any of the other barriers to employment, such as employer discrimination, inappropriate working conditions or lack of suitable local employment.  Instead it is designed to ensure that people do their utmost to get paid employment and to work enough hours to take them out of qualifying for benefits - regardless of how sick they are or what barriers they may experience over which they have no control.  

It is also designed to encourage people to establish their own safety net - to bring home to us all that we cannot rely on the collective resources of our society to ensure that we have enough to live on if we are unlucky enough to lose our job or get ill. (1)  

Government policy is being driven by the assumption that there are only two places that people can look to in order to get the necessities for survival: the private world of the family; and the public world of the labour market.  Moreover, promulgation of this value system did not start in 2010.  Governments have - to a greater or lesser extent - been promoting such ideas since the late 1970s.  The State has gradually divested itself of any responsibility for ensuring employment opportunities (the ‘full employment’ policies of the post-war period) replacing it with the individual’s responsibility to compete in the labour market.  Out-of-work and sickness and disability benefits are no longer underpinned by the intention of providing a safety net for those who cannot, for whatever reason, get the necessities for survival through paid employment.  Instead what was a ‘social security’ system has been turned into a system whose sole intention is to act as an incentive for individuals to sell their labour.

However, although this ‘welfare’ system is intended to emphasise individual responsibilities and discourage so-called ‘dependency’, the processes by which the individual looks to the State for help are also intended to take away individual agency (2).  If you apply for Universal Credit (or for its predecessor ESA), it is not you - or even your doctor - who defines whether you are able to work.  Instead, it is the State, using assessments carried out by a private company (currently Maximus), which determines your ability to work. 

Universal Credit, and its accompanying conditionality, takes away an individual’s ability to define what their best interests are. Once a person has no resources of their own, or a family to support them, their ability to define how an illness and/ or impairment affects their day to day life is taken away.  An individual’s ability to define their own reality is instead replaced by features of the current benefit system which are intended to ‘incentivise’ people into employment by the threat of destitution if they fail to comply with the conditions applied.   An individual’s reality is replaced with the mantra that ‘work is good for health and well-being’ (a piece of magical thinking which I discussed in an earlier blogpost) - an insistence which fails to acknowledge the elements of the modern labour market which are in fact bad for health and well-being (and which were acknowledged by the very review of evidence on which the government commonly relies).  

While tinkering with the current system may alleviate some of the misery it causes, this will always be limited by its key feature of using the threat of destitution to drive people into the labour market. And a refusal to recognise where sickness and impairment, together with the characteristics of the labour market, make employment at a living wage impossible means that increasing numbers of people fall into destitution.  

Both the Scottish government and the Labour Party are looking at alternative, rights-based forms of social security. The Labour Party recently heard from disability activists about the kind of principles that could deliver a more empowering assessment framework to replace the current Work Capability Assessment as well as how any new system must aim to protect and promote human rights.  Such discussions are welcome, driven as they are by a recognition that tinkering with the current system of Universal Credit will not address the real problem we face - the years-long attempts by Labour, Coalition and Conservative governments of the undermining of the very concept of social security.  It is that word ‘security’ which we all need our collective resources to deliver.



  1. Iain Duncan Smith, the architect of Universal Credit, argued that government should be supporting a policy such as Singapore’s Fortune Account, saving accounts for individuals to draw on as required to fund their own sick pay or unemployment benefits, an idea that was first floated by the Adam Smith Institute in1995.  These ideas have not yet come onto the mainstream policy agenda but they are made more likely by the radical restructuring of the welfare state, of which Universal Credit is only the latest stage.
  2. See Chapter 7 of In-validating disability: changing labour markets and out of work disability benefits. PhD thesis by Rosa Morris [full disclosure - my daughter]. 

Thursday, 13 September 2018

What "new deal for social housing"? Not for disabled people.

The social housing green paper, A new deal for social housing, is primarily an attempt to address the important issue - highlighted by what happened to Grenfell Tower residents - of ensuring that social housing tenants are listened to and have more say in how their housing is run. Important though this is, the policy proposals do not address any of the other important issues facing tenants, would-be tenants or local authorities. 

Instead, the proposals set out in the green paper indicate a government which is more concerned with increasing owner occupation than with ensuring that more people are living in affordable homes which meet their needs. These proposals are therefore limited by, to quote from the green paper itself, the government’s “vision centred on how social housing can support people to get on in life, making it more likely, not less, they will go on to buy their own home, as well as providing an essential, good quality and well run safety net for those who need it most”.

The government is clear that social housing’s role is at best a “springboard” (as they call it) to becoming an owner occupier and at worst merely a “safety net”.  Even though one of the aims of the green paper is to reduce the stigma associated with this tenure, the language and aims make it clear that social housing must always be inferior to other tenures.

This is unfortunate for everyone affected by our current dysfunctional housing market but it is especially unfortunate for disabled people who particularly rely on social housing. Secondary analysis carried out of English Housing Survey data found that 30% of households containing a disabled person (34% of working age households) live in social housing compared with 17% of all households. And according to the most recent data available from the English Housing Survey “50% of households in the social rented sector had at least one member with a long-term illness or disability. This is noticeably higher than in other tenures: 29% of owner occupier households and 23% of private renter households fell into this category”.

Only 7% of all housing in England meets even minimum accessibility standards, yet over 300,000 households, (including 140,000 working age households) have an unmet need for accessible, and affordable, housing. Working age households are less likely to occupy housing which is suitable to meet their needs than older households and people with unmet need for accessible housing are estimated to be four times more likely to be unemployed or not seeking work due to sickness/disability than disabled people without needs or whose needs are met.

The green paper contains no new money for social housing - indicating that the decline in social housing which started in the early 1990s will continue. NB Since I wrote this, the government announced £2bn for housing associations for the next spending review period (2022-2028).  This has been spun as 'extra' but in fact the current spending review period (2016-2021) allocated £9bn for housing associations, which is a reduction from the £25bn allocated by the last Labour government.

The Right to Buy removes homes from the tenure each year and they are not being replaced. Every government since the Right to Buy was introduced - whether Conservative, Labour or Coalition - has pursued a deliberate policy of failing to support local authorities to replace the homes lost each year.  In fact, the amount of social housing being built has consistently fallen since the early 1990s and this has accelerated since 2010.  The so-called “safety net” is getting smaller and smaller yet there are over a million people on council waiting lists (the numbers have declined in recent years but this is due partly to local councils tightening their criteria and partly to more action being taken to update waiting lists) and the numbers placed in temporary accommodation have increased by 61 percent since 2010/11. 

Current policy responses to housing need are focussed on increasing the supply of various forms of so-called ‘affordable’ housing (meaning a maximum 80% of market value): affordable rented from housing association, shared ownership and affordable home ownership. This is despite the fact that the government’s own Impact Assessment carried out when ‘affordable’ rents were introduced in 2011/12 identified that an increase in social housing would reduce “the numbers in housing need by three times as much as a rise in private supply of the same amount, with these housing services better targeted at those in need.”  Unfortunately, the policies which followed, and which are proposed in the current green paper, ignore this evidence. 

The government has a goal of 300,000 new build properties a year in England but housebuilding at this level was only ever met in the past because of the contribution made by local councils building social housing. Such volumes have never been achieved when we relied entirely on the private sector to provide new houses. Even ‘affordable’ homes for sale have declined over the last 10 years with completions halving since 2009/10 (although within this total homes sold for shared ownership have risen).

Neither can the private sector be relied upon to build new homes that are suitable for disabled people so seeing social housing as merely a “springboard” to home ownership does not address the barriers they face. Lifetime Homes Standards were intended to encourage housing which suited people at all stages of their lives and which would be adaptable to both the inevitability of needs in old age and the unforeseen needs resulting from impairment and illness.  Successive governments have failed to adopt the necessary building regulations which would made this possible and the planning framework remains weak on requiring private developers to build housing suitable for everyone. 

Even the existing planning requirements are seldom properly implemented.  Local authorities are supposed to assess the level of need amongst disabled people when drawing up local plans but - according to a comprehensive survey carried out by the EHRC - most do not have adequate data on which to do this and very few local authorities set targets for accessible housing.  Building regulations require new dwellings to be built to a Category 1 ‘visitability’ standard (meaning that people with mobility impairments should be able to get inside the ground floor of a home).  Yet many developers do not comply and few local authorities take action against them. Only a third of local authorities in England set a target for accessible homes in their Local Plans and two-thirds of them said they didn’t monitor whether this target was actually met.

Given how important social housing is for disabled people, of all ages, the green paper is a missed opportunity to increase the supply of housing built to Building Regulations Category 2 standard (which is similar to the original Lifetime Homes Standards) and to set and require targets for Category 3 (wheelchair accessible) homes, something which was also recommended by the EHRC in their recent report. 

Not only does the green paper reflect an assumption that social housing can never be a mainstream option.  It also assumes that housing for disabled people is not a mainstream issue.  The only current housing initiative which addresses housing need amongst disabled people concerns supported housing.  This is to be welcomed but most disabled people live in households with others and their housing needs are mainstream - an affordable home which is physically appropriate to their requirements and where they can receive whatever support they need to access the opportunities that non-disabled people take for granted. 

The green paper fails to address any of the issues relating to the role of social housing identified by the EHRC in their recent inquiry into housing and disabled people.  For example, the green paper could have proposed that local authorities take action to make better use of existing housing that might be suitable for disabled people and their families, by for example requiring the setting up of Accessible Housing Registers.  Only 1 in 5 local authorities in Britain currently have such registers which make it easier to both match people with properties but which would also help with identifying gaps in supply of accessible housing. According to the government’s own figures, one in five disabled people in social housing live in unsuitable accommodation.  

There is a reference in the green paper to the ‘review’ which has been commissioned on the Disabled Facilities Grant system, the results of which should have been published by now but which is apparently now going to be incorporated into the long-awaited social care green paper.  This prompts concerns that the funding for DFGs, which is only guaranteed up until March 2020, may be incorporated into any new funding arrangements proposed for social care. 

The value of DFGs and the difficulties with the current system are well known. Frances Heywood’s work in particular demonstrated over 10 years ago illustrated that even minor adaptations can reduce the cost of health and social care and improve the quality of people’s lives. The difficulties with the system are similarly well known: a shortage of occupational therapists (a problem which goes back some 40 years); a failure to properly the fund the revenue costs of running DFG services; and  the inevitable bureaucratic difficulties created by having an entitlement delivered by a cash limited budget.   It’s also well established that many people who need adaptations to their home don’t know about the DFG system and, amongst those that do, negotiating their way through the system can prove difficult. The green paper could have proposed increasing the availability of information, advice and support to enable people to access the support they need and are entitled to, to carry out much needed adaptations, some of which are small but make a major difference to the quality of people’s lives.  All of this could have much improved existing social housing so that it better meets the needs of current tenants. 

All in all the social housing green paper is a missed opportunity to respond to the potential that the sector has to make a major contribution to unmet housing needs amongst the population generally and amongst households with disabled family members in particular. The underlying problem is that the government has a very limited vision for social housing, seeing it as nothing more than a “springboard” for home ownership and otherwise merely a “safety net”.  This rigid, ideological position means that the government is failing to address a growing problem - the lack of appropriate and affordable housing - which affects increasing numbers of households. 



Monday, 30 April 2018

Charging for support: a tax on disability and old age

In 2017 the Independent Living Strategy Group - an informal grouping of disability organisations and activists, chaired by Baroness Jane Campbell - put out a request for examples of where people had tried to challenge how their local authority was implementing the Care Act.  The most common experience we were told about was where people challenged the amount they were being charged for community care (which could also take the form of a charge against their direct payment).

This is a long-standing and much contentious issue. We are talking here, not about residential care but about the support people need to carry on living in their own homes. Local authorities do not have to charge for community care but, as their budgets have been progressively cut back, they have increasingly been opting to use their discretionary powers to charge. Nevertheless, there remains a great deal of inconsistency across the country as to how much they raise in charges - ranging from 4% of the total spent on adult social care by one local authority through to 46%.

The current political and public debate about funding for social care is too often confined to the issue of whether older people should have to sell their homes in order to fund residential care.  But more people (of all ages) receive social care support to live in their own home and many will have been subject to a financial assessment to determine how much they should contribute towards the cost of their support. 

There is a dearth of up to date information about charging and its impact: a 2008 survey found evidence of people giving up social care support because they couldn’t afford the charge, and almost a third said they didn’t feel their disability-related expenditure was taken properly into account in the means-test their Council applied.  If the impact of charging was significant 10 years ago it is likely to be even more so today, given that more local authorities are now charging and that disabled people have been considerably disadvantaged by the impact of various welfare reforms. 

Most disabled people will tell you that they have additional costs directly related to their experience of impairment/illness and/or disabling barriers.  A 2014 Scope survey found that on average these additional costs amount to £550 per month.  These costs stem from not only the costs of extra heating, specialist equipment, diet, transport etc but also, as the report found, from the fact that goods and services marketed to disabled people commonly cost more than those aimed at non-disabled people.  Daily life just costs more if you’re disabled.

Disability living allowance/Personal Independence Payments and Attendance Allowance are an acknowledgement of the additional costs of being disabled - which is why they are not means-tested - but the level at which they are paid is nowhere near the actual costs.  In addition, local authorities are allowed to include the care component of DLA/PIP, and Attendance Allowance in the means-test for social care. 

Since the late 1990s, earned income is not taken into account in the means test for social care - or at least it shouldn’t be - but savings and pension income is.  This means that, not only can disabled people be penalised if they have been able to build up savings, but that they can experience a dramatic ‘cliff edge’ in their standard of living once they retire or are forced to give up work because of illness or impairment.  Households with at least one disabled adult are more likely than non-disabled households to be in debt and unable to build up savings, less likely to be able to pay for an unexpected but necessary expense, and more likely to be living in poverty.  Small wonder that many people (we don’t know how many) never get the care that they have been assessed as needing because they can’t afford the charge made by their local authority.  As one person told One Place East, a disability organisation in Redbridge: 

So there I am, Mrs Smith, desperate for this care, I can't wait for the financial assessment because I don't know when this is going to be and at the same time I'm scared about what the true cost of that care is going to be and that assessment officer who is there to put all these things in place can't advise me so I'm going to go, no thank you dear. 

One local Council, however, has bucked the trend and abolished charges for social care for its disabled and older residents.  The Labour opposition in Hammersmith and Fulham had made a commitment in run-up to the 2014 local elections that, if elected, this is what they would do….and they kept their promise, arguing that this was “getting rid of what was in effect a tax on disability”. 

If one Council can do this, why not others?  Is it really worth spending money on means-testing and collecting the charges?  Is it right that a system which is intended to provide the support people need to go about their daily lives is also designed in such a way as to reduce their standard of living to just above the poverty line? Is it right that the often haphazard and inadequate way that charges are calculated means that many face the decision of either falling below the poverty line or refusing the help they so desperately need?  Is the long-awaited Green Paper likely to tackle any of these issues?

The Independent Living Strategy Group is determined to raise the issue of charging for social care when the Green Paper finally emerges.  To help inform the debate we are carrying out a survey of people’s experiences and also seeking information from local authorities (through a Freedom of Information request).  We hope to publish the findings in the summer.



Monday, 9 April 2018

Continuing the #socialcarefuture debate

This blogpost is an attempt to address some of the challenges and draw attention to some of the good ideas discussed in the #socialcarefuture debate initiated by Martin Routledge and In Control. 

Some have argued that we need to reframe our arguments about social care. In his contribution to the debate, for example, Neil Crowther said: “A quick look at recent communications around social care by a selection of public-facing organisations in the field suggests that they are contributing to the problematic way social care is framed”.  Two key characteristics of this “problematic way” he identified as “the demographic time bomb” of older people’s demands on health and social care services, and the accompanying language of a “crisis” in both the NHS and social care. Such language encourages fatalistic thinking he said, and does not help to convince the public that these are important issues.

Yet we desperately need to convince the public (and politicians) of the case for more funding for social care. Although we know that there are better ways to spend current social care budgets, as Richard Humphries says, “The oft-quoted mantra that ‘it’s not just about the money’ doesn’t mean that it is not at all about the money….Social care will never work properly without adequate and rising investment”. 

But what would convince the public and politicians?

Should we be using the term 'social care’ at all?
Alicia Wood wrote: “I rarely use the term social care in my work or home life. It somehow feels so broad it is a bit meaningless to me”.

As she also pointed out, there is very little awareness amongst the general public about what ‘social care’ is.  Current awareness is likely to be dominated by recent political controversies over the so-called ‘dementia tax’ and ‘bed-blocking’ in the NHS.  The associated language and individual stories create feelings of hopelessness about how awful things are, of fear of what faces us in old age, and at best a determination that, as individuals, we will do our utmost to avoid such situations. 

The plethora of services that go under the generic name of social care are about so much more than is currently conveyed in public debate. It includes the community organisation that provides a play scheme for disabled children during the school holidays, the PA employed by a disabled woman who works as a solicitor, the equipment supplied to a 90 year old which enables her to live safely in her own home - the range of things which come under the umbrella of ‘social care’ is enormous.

This can mean that when debate focusses on key issues there is often the accusation that one group or another has been left out - for example, recent debate about funding social care has been criticised for focussing on older people to the point of ignoring the large numbers of disabled people of working age; at the same time, disabled people’s own demands for independent living have often been accused of leaving out the concerns and circumstances of people with learning disabilities and people with long-term health conditions. 

In these circumstances, different groups worry that their own particular circumstances and requirements are unacknowledged. Disabled people with physical impairments may argue for support services which enable them to take advantage of education, training and employment opportunities, justifying spending on such services on the grounds that this is an investment enabling them to gain and retain paid employment.  Such arguments may feel threatening and undermining however, to people experiencing chronic illness who feel that, particularly in this current era of ‘welfare reform’, illness as a barrier to paid employment is not sufficiently recognised. 

Or to take another example - recent debate often focusses on the current problems in the provision of residential care.  However, there is little recognition that, from the point of view of the person needing support, precisely what the ‘problem’ is can differ significantly.  For young disabled people with high levels of physical support needs the current problem is the threat of being unwillingly moved into residential or nursing care because of the lack of funding for support in their own home.  Yet for an older person nearing the end of their life, the problem may be a lack of good quality care in a nursing home, resulting in them remaining unnecessarily in hospital or in undignified, lonely and difficult circumstances in their own home. 

But the current language of the ‘social care’ debate not only poses problems for those reliant on such services, it is also problematic because it does not speak to people’s daily lives, their families and relationships.  As Sam Clark , Chief Executive of the Local Area Co-ordination Network, wrote “Social care is all about people, their relationships, and their well-being”.

Instead of engaging in political and public debate about ‘social care’, perhaps we should instead talk about the people, their lives and relationships for whom it caters. We should be asking, as Alex Fox does, how can we ensure that the money spent on ‘social care’ enables “people to choose and build long-term relationships as part of building family and community life”?

How should we be arguing for more resources?
If the wide variety of services which can make such a difference to people’s lives need more resources, what arguments can we marshall to justify increasing public expenditure?  They will need to be strong arguments indeed if we are to argue not just for an increase in funding but also that social care should be free at the point of use - as I argued in my own contribution to the #socialcarefuture debate.

In trying to move the debate beyond the language of a crisis of an ‘ageing population’, as well as to recognise the wider group of people for whom social care caters, it is often argued that expenditure on (younger) disabled people’s support needs should be treated as an investment.  This raises the question of what it is that we are investing in?  What return do we expect as a society?

It is generally the case that talking about investment implies a return of something which has economic value.  Thus a programme like Access to Work is said to be a ‘good investment’ because it enables people to earn an income and pay tax and national insurance, instead of relying on benefits - a move commonly characterised as from ‘dependence’ to ‘independence’.  

Quite apart from the fact that the ‘employment’ argument leaves out the largest group of people who need support - older people - it also plays into a particular frame around who is ‘deserving’ of support.  Do we have to be economically productive in order to be deserving of support?  What does it say about the values of our society if people’s worth is tied to their ability to engage in paid employment?

If we argue that an increase in resources for social care will enable more people to be economically productive, it plays into the argument made by people like Times columnist Matthew Parris, who refers to older and disabled people as “an unproductive overhang”.  He wrote that “Some day soon we’ll all accept that useless lives should be ended” and that “any ageing society will in time question how much those wanting help should demand of those who must pay for it” (the Times article from which this second quote is taken is behind a paywall but is available here.  I wrote an earlier blogpost about his arguments).

Should we not be talking about the type of society - rather than the ‘type’ of individuals - that we might want to invest in? 

  • Wouldn’t we like to invest in the kind of society where what we currently call ‘social care’ services are dominated by what Sam Sly describes as “acts of humanity [which make] a difference to people’s lives”.
  • Wouldn’t we like to invest in the kind of society where parents of disabled children can come together to draw support from each other, at a local Children’s Centre which at the same time provides a point of access to a variety of specialist services and professionals? 
  • Wouldn’t we like to invest in the kind of society where a person in the advanced stages of dementia is cared for in a small residential home, where the high standards of care provided mean that no-one has to be medicated into semi-consciousness and where the environment is so comforting and comfortable that families and friends find it a pleasure to visit?

Wouldn’t we like to celebrate the basic human instinct of kindness by investing our collective resources in making these and many other similar experiences possible?

And at the same time, we could celebrate such investments as wise, ultimately self-interested, decisions for none of us know whether we will be the beneficiaries at some point in our lives.  No-one knows whether they or their family will experience the need for social care support - though the likelihood is that by the last stages of our lives we all will. It is in all our interests, therefore, to invest in the things which will enhance the lives of the ‘least advantaged’, as John Rawls put it when he argued for the ‘veil of ignorance’ principle to guide political decisions. 

Or to put it another way - we should be applying the Golden Rule in all our decisions about how to raise and spend our collective resources: Do as you would be done by.

Visions for the future
Which leads me to my response to Martin Routledge’s challenge issued on Twitter: “If u entered a cave, rubbed a lamp & the Green Paper genie offered u 1 wish 4 the forthcoming paper - what would it be?”.  I’m not going to answer this in terms of the type of language or commitments that are usually in a green or white paper. And I’m not going to limit myself to one wish (sorry Martin).  Instead, I’ll start by drawing you a picture of what an imaginary three households in my village might look like if the Green Paper delivered real change.

In Honeysuckle Cottage lives Mrs Lucy White.  Aged 92, she has been living on her own since her husband died over 20 years ago.  She has a daughter, son-in-law and grandchildren living nearby in new affordable housing (which really was affordable rather than the 80% of ‘market value’ which is the current definition of ‘affordable housing’).  As her daughter’s house was built to Lifetime Homes Standards Lucy was able to stay with her when she recently came out of hospital following a fall, while adaptations to her own home were done by the local Care and Repair organisation, enabling her to return home.  She has help provided by an organisation in the village - a co-operative which is run by and for the community - funded by her personal budget.  

Down the road live Mr and Mrs Green.  They used to provide short breaks to parents of disabled children by having children to stay for weekends but when Mr Green was made redundant from his job they decided to become involved in Shared Lives.  A young man, Oliver, now lives with them.  Oliver had spent three years in an Assessment and Treatment Unit, many miles from his family who live in the nearby town. In order to support Oliver, Mr and Mrs Green received extensive training and continued support from a local organisation specialising in supporting people with learning disabilities and/or autism who also have significant communication needs.

Also in the village lives Laura Brown, a 40 year old mother of three, who has a chronic illness which prevents her from doing much outside her home.  She works part time and remotely, arranging speakers and booking venues for an organisation which puts on various arts festivals all over the country.  She has a personal assistant who supports her in her parenting role, paid for from her personal budget. The personal assistant lives in a village five miles away and does not have a car and there is no public transport.  However, she travels to Laura’s house using a community transport service, which is run by three Parish Councils in the area.

There are three policies which would help make these scenarios possible.

Firstly, the establishment of an Independent Living Fund which would build on the experience of the previous ILF but have some key differences.  It would be open to people of all ages (not just working age adults as the ILF was).  It would use nationally consistent criteria to deliver locally co-produced responses to individual needs. Social care practitioners would work out of community hubs (as described by Jenny Pitts) to develop Support Plans with individuals and their families and friends, sometimes using Circles of Support.  

Secondly, local authorities’ approach to commissioning will need to change radically, as described by Bob Hudson, so that social value dominates the decision-making process. Most importantly, commissioning would need to be done in partnership with people who will use such services, for example, the training and support provided to Mr and Mrs Green as Shared Lives providers would be commissioned by a Panel which included those with lived experience of learning disabilities and/or autism.  These commissioning bodies would set aside budgets each year for innovations in responses to a range of needs and circumstances, for evaluations, and for the continuation of responses which yield good results. 

And thirdly, it would mean the development and implementation of a national housing and community policy which included within it commitments to:
  • build and adapt homes which are to Lifetime Homes Standards
  • significantly expand the supply of low rent accommodation with security of tenure
  • ensure the infrastructure necessary to create and maintain supportive and inclusive communities.

Change must come from local communities and be implemented in partnership with them.
National policies must be generated by local initiatives and government’s role should be to help this to happen and to also provide enabling frameworks for co-produced implementation. Unless such frameworks are put in place, we will just continue the past history of good ideas being generated within local communities only to be corrupted by the disempowering cultures which too often pervade large-scale implementation. We need, as Sian Lockwood wrote, “a very different relationship with public bodies - one where the community has responsibility for determining local priorities and shaping the solutions that will address those priorities”.

This applies to the whole infrastructure which makes good quality lives possible, for example in the field of housing, Jeremy Porteus has pointed out that “Innovative and collaborative organisations or groups of friends have in recent years pioneered a range of new citizen-led housing models”.  He lists a number of initiatives which “are vehicles for giving people greater choice and voicing the opportunity to manage their own care and support”.  The key to the future success of all such initiatives - whether in health, housing or social care - is that they come from groups and communities themselves and that they are made possible by national policy frameworks which are enabling and promote inclusion.

Vidya Alekson argues that we must “build a bedrock of community capacity on which the formal system relies”. I would argue that it is this community capacity which will generate not only the informal support that creates inclusion but also the innovations in publicly funded services which are also necessary.   Unfortunately, as Ewan King says innovations in social care often seem stuck in a “pilot phase”. If I have learnt one thing from my involvement in disability politics and social policy, it is that while good ideas are generated by people who live the experience, once they get taken on by national and local bureaucracies, the original intentions often - far far too often - get lost in the morass of rules and regulations, in professional and service priorities, their principles corrupted by cultures which are by their very nature resistant to change. 

There is a distinct danger that politicians will look for yet another ‘new idea’ to address current difficulties in the funding and provision of social care.  But as Julie Stansfield writes we know, not only what are the things which enhance people’s lives but also what makes economic sense. We certainly don’t need ‘new ideas’ imposed from above, whether from politicians or from professionals.  While we do need national policies to bring about worthwhile investment in what we now call social care, such policies have to be more like enabling frameworks for the innovations which must come from people with lived experiences. And when innovations are shown to be worth investing in - because they improve people’s lives - they must be grown on in partnership with people with lived experience.  That means establishing genuine partnerships.  It means going far beyond token ‘representation’ on boards, panels, advisory groups.  It means sharing decisions and responsibilities.  

It means a radical change in not only how we develop policies, and in how we commission and deliver services, but also in what we mean by ‘services’.  As many people have said “I want a life not a service” - and that’s what ‘social care’ should be for everyone, from the disabled 8 year old who wants to play with their friends to the 80 year old coming out of hospital following a fall.