Broken Promises: Looking back on ‘Improving the Life Chances of Disabled People’.

Text of the Lorraine Gradwell Memorial Lecture, given on Friday 8th March 2019.

In 2004, a group of civil servants working in the Prime Minister’s Strategy Unit came to Manchester to visit Breakthrough UK.  Lorraine had organised the visit for them to see how Breakthrough delivered employment support for disabled people.  They heard how Breakthrough advisors - most of whom were disabled people themselves - helped to address a range of barriers, how they challenged employers’ attitudes and assumptions, and how they acted as advocates for the disabled people they were working with.  

I was with that group of civil servants. As a freelance consultant I was working with them on what became a 25 year strategy, published in 2005 called ‘Improving the Life Chances of Disabled People’.  I had been brought in to lead a section on independent living, which became the main thrust of the whole strategy - mainly because I was able to introduce the civil servants to the ideas, the organisations and the individuals who had been fighting for so many years for our rights to choice and control in our lives.  

Tony [Tony Baldwinson, Lorraine’s husband] told me that Lorraine saw the Life Chances report as a ‘policy high point’.  It was certainly well received generally by the disability movement.  It was a moment of hope, a moment when we thought that government had finally understood the nature of our lived experiences, the barriers we face, and the kind of solutions that would make a real difference.  Although, perhaps inevitably, the policy proposals didn’t go far enough the general feeling was that, to coin a phrase, ‘things could only get better’.  

Indeed, Life Chances was followed by the setting up of the Office for Disability Issues - a cross government unit with the aim of promoting disability equality across all government departments - and the Independent Living Strategy (which I also worked on and which again Lorraine influenced). 

There were two commitments set out in Life Chances which the disability movement particularly welcomed.  The first was one which said that, by 2010, every local authority area should have a user-led organisation modelled on existing Centres for Independent Living. 

The second was a cross-government approach to providing disabled people with the resources - money, services, adaptations and equipment - which enable choice and control and social inclusion.  This was to be initially delivered by piloting individual budgets, which were to include not just social care funding, but also continuing health care, employment support and disabled facilities grants. 

Both these commitments were taken forward in the context of the Office for Disability Issues being set up to work across government departments to deliver the Life Chances strategy. 

But the financial crisis of 2007/8 came less than three years after the publication of Life Chances, and we were only two years into the five year Independent Living Strategy when the Coalition government took over in 2010.  And things changed.

Like me, Lorraine was struck by how quickly the public and political discourse separated disabled people into who was to be categorised as ‘vulnerable’ and who was a ‘scrounger’; how quickly government’s emphasis seemed to be entirely on reducing the numbers of people on out-of-work disability benefits; how the gains we thought we had made, and the opportunities we thought there were for further progress, seemed to disappear almost overnight.  

But actually - looking back on the hope associated with Life Chances - it is possible to see that there were other policy developments happening at the same time - before the financial crisis - which sowed the seeds of what was to come under the Coalition and then Conservative governments in the years since 2010. 

It is also possible to see, with hindsight, that we should have been much more ambitious in our proposals concerning independent living. 

To take the first point - other policy developments at the time - the Life Chances strategy included a chapter on employment but it was what was happening on this issue in other parts of government which had a more profound impact on disabled people. 

The disability movement during the 1980s and 1990s framed employment opportunities as a civil rights issue, arguing for the right to work and for an end to employer discrimination and other barriers to employment.  Recognition of discrimination in the context of employment was a key part of the campaigns for disability anti-discrimination legislation.

The employment chapter in the Life Chances strategy was written by a civil servant on secondment from Treasury.  Although the chapter did refer to discrimination and barriers, it also framed the problem as there being “little incentive or assistance for people to move off benefits and into work”. It 

made assertions such as work being “a component of good health” , “work as a positive driver for good health” and emphasising the “beneficial health effects of work” - almost as if employment was a treatment for ill health.  Lorraine herself, in commenting on Life Chances, raised a concern that the proposals seemed to conflate impairment and ill health, leading to a possibility that people who were ill would yet still be expected to work.

In the same year that Life Chances was published, the government also published a document called ‘The Scientific and Conceptual Basis of Incapacity Benefits’.  This report had been commissioned by the Department for Work and Pensions and was to form the basis for what became the Work Capability Assessment.  The document argued that in order to reduce the numbers of people on out of work disability benefits the social security system needed to bring about a “fundamental transformation in the way sick and disabled people see themselves”.

This “fundamental transformation” involved separating disabled people out into two main categories: those “with severe medical conditions and permanent impairment” and those with what they call “common medical conditions”, who they thought make up two thirds of those claiming out of work disability benefits.  They argued that it was only the former group who the welfare benefits system was supposed to provide for.  Those with ‘common health conditions’ they identified as having  “mild/moderate mental health, musculoskeletal and cardiorespiratory conditions” and experiences of these conditions were said to be “subjective”.   It was therefore people’s “attitudes and motivation” which were the main barrier to employment. 

Instead of seeing the lower rate of employment amongst disabled people as a civil rights issue, governments of all persuasions have presented the numbers of people eligible for out of work disability benefits as the problem. The focus is therefore on ‘getting people off benefits’, instead of delivering equal opportunities for employment; the focus is on scrutinising whether people are ‘fit for work’, not on what changes to working conditions might make employment possible; the focus is on people’s supposed attitudes and motivations instead of on whether suitable work is available in the local labour market.  

Worse than any of that, is the denial of people’s own experiences of illness and/or impairment - unless you can be categorised, by a measurement devised by the DWP, as having a severe and permanent condition then your experience is considered to be contentious.  Thus the Work Capability Assessment gives assessors the power to determine a person’s level of impairment or their experience of ill health - treating as irrelevant not only medical diagnosis but also how people themselves experience their impairment or illness and its impact on them.

(For a full account and analysis of this issue see ‘In/validating disability: changes in the labour market and out of work disability benefits’ by Rosa Morris - full disclosure, my daughter)

No wonder that, particularly since 2010, disabled people’s organisations have been forced to focus on illness and impairment in defending people’s right to an income if they are not able to work. Work is framed not only as an obligation but increasingly as a response to ill health - to such an extent that the 2017 White Paper on work and disability was jointly published by the Department of Health and the Department for Work and Pensions, and urged healthcare professionals to see “work as a health outcome”. 

Disabled people welcomed the way the government had formally adopted the social model of disability in Life Chances.  But what we hadn’t realised was how the model would be misused.  At the time of Life Chances, the disability movement had spent almost 30 years emphasising how it was social, economic and attitudinal barriers not impairment or illness that held us back.  But this meant we were caught on the back foot when, at the heart of the reforms to welfare benefits, was a denial of people’s experiences of impairment and illness.  

It’s not surprising therefore that it has often been people with chronic illness who have made the most vocal challenges to the Work Capability Assessment, and also to the replacement of Disability Living Allowance with Personal Independence Payment. In 2012, the Spartacus report about welfare reform, written by a group of social media activists - many of whom couldn’t leave their homes because of chronic illness - hit the headlines and helped to bring about a series of defeats for the government in its legislation to reform Disability Living Allowance.  Since then a movement has grown of people with chronic illness who seek to apply the social model to their experiences. They have developed and enriched our understanding of the social model, a lot of this now happening through the Chronic Illness Inclusion Project, whose website I highly recommend.  

Life Chances would have been a better strategy if these groups and their experiences had been involved in the disability movement in previous decades, and particularly if they had been consulted in developing the Life Chances proposals on employment. 

It wasn’t just that those of us working on Life Chances didn’t pay enough attention to what was going on elsewhere in the policy jungle.  We also made a fatal error in our proposals on independent living.

Yes, it was great that the Life Chances strategy adopted the disability movement’s definition of independent living - the recognition that independence comes not from doing things for yourself, or living on your own, but about having assistance and support how and when we choose.   And the commitment in Life Chances to pilot individual budgets laid the foundation for what became personal budgets for social care - the intention being that self-determination would be achieved by giving people control over the resources needed for their support.

But personal budgets have not generally delivered self-determination.  Instead, in the context of significant cuts in funding for social care, the level of resources has too often been reduced to only providing the most basic personal care.  Most importantly, there remains an unequal relationship between disabled people and social services professionals because it is local authorities who have the ability to determine - through the assessment and resource allocation process - what kind of life we can lead. 

When we were developing our proposals for independent living in Life Chances, we didn’t pay enough attention to the growing resistance within the Department for Work and Pensions to the Independent Living Fund.  The ILF was perhaps the most successful independent living policy there has been in this country but it happened entirely by accident and DWP as a department was never reconciled as to why its budget should be their responsibility rather than that of social care. 

We should have recognised that the ILF had more potential to deliver a right to independent living than any reform to local authority social care.  The origins of the ILF were important - it was set up in 1988 to replace the Domestic Needs Allowance, a social security payment which covered the additional costs of those people who needed help with what was called ‘ordinary domestic tasks’ like cooking and cleaning.  It was thus part of a system based on entitlement – if you met certain criteria you had the right to a certain amount of money. Although this principle of entitlement was undermined by the gatekeeping role that local authorities played in accessing ILF money after 1993, there was plenty of evidence of the empowering role that the ILF played before it was abolished by the Coalition government.

When we looked at the problems with social care at the time - in particular at the varying practices and policies across local authorities, the difficulties disabled people had moving from one area to another - the obvious question arose as to whether independent living should be funded on a national basis and taken away from local authorities.  We floated this idea but the response was that this would undermine the local accountability which was achieved by leaving it with local authorities. 

Instead of accepting this argument, we (but especially me in the role that I had) should have challenged it and put the case for an independent living system, nationally funded and based on the principle of entitlement. 

We should have done this because the social care system does not, unlike the NHS, deliver support on the basis of need but instead delivers it on the basis of the resources available.   And while local authorities have the legal responsibility for social care, it is central government that determines what level of resources are available.

Life Chances did not tackle this fundamental problem. Neither did it address the impact of the privatisation of social care services which had been steadily taking place since the 1990 NHS and Community Care Act.  By now it is clear that the ‘market’ in social care services, created by that legislation, has failed in that both home care and residential care providers find it increasingly difficult to make a profit because of the squeeze on the amount that local authorities will pay. The associated low level of pay for care workers means that care providers have difficulty recruiting and rely on migrant workers - yet this will become much more difficult after Brexit and the proposed immigration policy which would require people coming into the country to be earning in excess of £30,000. 

The self-determination that personal budgets were intended to deliver has, mostly, failed the materialise. Life Chances had pointed out that delivering independent living “would require a cultural shift so that social care professionals are working to promote self-directed support”. Some people working in social care try hard to support people’s self-determination, but they can only struggle against an inherently disempowering relationship.  Three quarters of people over the age of 65 are on local authority managed budgets, with little or no choice of who provides their care. Even amongst people with physical impairments under the age of 65, only half receive their budget as a direct payment - and there is increasing evidence that local authorities are placing more and more restrictions on what direct payments can be used for, for example by insisting - contrary to the Care Act guidance - that people have to use a prepayment card rather than have money paid into a bank account.

Article 19 of the UN Convention on the Rights of Persons with Disabilities sets out “the equal right of all persons with disabilities to live in the community, with choices equal to others”.

The current social care system is incapable of delivering this right.  

The Reclaiming Our Futures Alliance - an alliance of a range of disabled people’s organisations in England - recently published their proposals for making independent living a reality.  They include a national independent living service, funded from general taxation, free at the point of delivery, and delivered locally in co-production with disabled people.  This is what is necessary to deliver our Article 19 right to independent living.

One final point, one of the things that Life Chances did get right was the proposal for a national network of disabled people led organisations, modelled on the existing Centres for Independent Living.  The Department of Health, together with the Office for Disability Issues, set up a programme for delivering this commitment but it was never fully realised and since 2010 many local disability organisations have had their funding cut and have found it increasingly difficult to hold onto existing contracts to provide direct payments support services. Such local organisations are a vital part of any nationally funded independent living service.  

It’s at the local level and amongst disabled people ourselves that we will develop innovative ways to enable people to live ordinary lives. It’s amongst disabled people and their allies that we’ll find different ways of delivering support.  

This relates to an issue which is of concern to the majority of the population and not just to disabled people: how to design and deliver services that are responsive to the wishes of individuals, that are accountable to their users (rather than to shareholders or to a professional group whose culture is one of ‘we know what’s best for you’).

What we need from government is investment in the infrastructure which enables us to develop our own responses to making Article 19 of the CRPD a reality - to enable “the equal right ….to live in the community, with choices equal to others”.  And I know that that’s what Lorraine would also have considered a priority.  While she had a key influence at a national level, it was in her own city that she helped build organisations which make a difference to disabled people’s lives and that’s what we must continue to do.

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. 

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]. 

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.