Disability rights – in need of development

Guest Blog by Neil Crowther

“We can’t solve problems by using the same kind of thinking we used when we created them” - Albert Einstein

In my last blog ‘no more defending the indefensible’, I argued that disabled people and their organisations should be arguing for more far-reaching reform of the welfare state, not defending the status quo.   My broad suggestion was to promote a shift from our present ‘social welfare state’ to what I called a ‘social development state’.   In this blog I will set out some of the key features of the social development state and the social, economic and political case to be made for it.

I use the word ‘development’ very deliberately here because many of the ideas below are drawn from the world of international development.  It is curious to me just how little of this thinking – of which the UK is a major exponent abroad – has entered the domestic scene.   It offers myriad ideas and possibilities which I believe can help us to move forwards.

From ‘aid’ to ‘development’

The past three decades have witnessed a paradigm shift in the relationship between rich and poor countries.   The first wave of change involved a move from ‘aid’ - feeding people - to a ‘livelihood’ approach - giving people the means to sustain themselves.    The case for this shift is famously encapsulated in the Chinese Proverb “If you give a man a fish, you feed him for a day. If you teach him how to fish, you feed him for a lifetime“.    Hence the modern goal of development is to help developing countries to build well-functioning local structures and systems so that they are able to manage their own development and reduce their dependency on aid.   A major voice within this movement has been Professor Amartya Sen.  Sen successfully argued that poverty could no longer be regarded as a purely economic problem that could be measured in term of income alone. Rather it is a lack of assets, opportunities and entitlements that prevent the well-being of people. Poverty is both induced by human rights violations and in turn becomes a root cause of several human rights violations.    Effective development therefore demands attention to the human rights and freedoms of individuals, and involves not just attention to inequality of material resources, but to inequality of power also.  This has begun to herald a third wave in development thinking towards a ‘rights-based approach’.

A similar trajectory of thinking can be seen in disability policy – a rejection of the idea of disabled people as objects of charity, to a demand for self-determination and the conditions which will enable full participation.  The UN Convention on the Rights of Persons with Disabilities embodies these ideals, sets out the freedoms and opportunities that disabled people should enjoy and obliges governments, including those in the UK, to make rights a reality through positive action. 

Yet the approach of many countries to disability policy remains a ‘half-way house’, co-mingling legislation designed to re-affirm disabled people’s civil and political rights with an out-dated (and disintegrating) approach to ‘welfare’ rather than support for independent living. 

Can’t do, can do….or should have the freedom to?

Both the present government and past have claimed that welfare reform is aimed at focusing on ‘what disabled people can do, not what they cannot’.  This has the appearance of a positive shift in expectations, but it obscures the fact that the criteria governing access to most benefits and services for disabled people continue to be focused wholly upon the latter.  This is not an exclusively British phenomenon. As a recent report of the US National Disability Council put it “public policy remains entrenched in the 1960s-era all-or-nothing approach to serving people with disabilities, in which a person must demonstrate inability to be productive to be deemed eligible for critically important supports.” Pressures on local authority adult social care budgets means that spending focuses on life and limb support to those most at risk, not towards supporting disabled people to participate and realise their potential in family, community or economic life. 

In a social development state the starting point would not be on what disabled people can do or on what they cannot do, but on the substantive freedoms they should enjoy.  The State’s objective would be to address the range of barriers which stand in the way of disabled people realising these freedoms.  In this new approach, the basis of eligibility for support becomes the extent of assistance a person needs to realise his or her rights and to enjoy equal freedoms and opportunities.   Where disabled people – and other groups – are concerned, the state would no longer simply be confined to safeguarding people’s freedom from hunger or destitution – a safety net.  Though it would of course continue to be required to provide social protection, it would do so within a wider commitment towards promoting people’s freedom to be and do things of value both to them, and ideally society as a whole – an enabling State. This excellent blog by All Big Ideas Start Small explores how such thinking would reform Employment and Support Allowance, bringing it into line with the already more progressive parts of our public support system, such as Disabled Students Allowance and Access to Work. 

Rather than people trade their freedoms for the security of the State, the social development state would exist to empower people to enjoy the freedoms and to practice the responsibilities of citizenship.  Of course, this is not a new idea – it’s more commonly known by disabled people as ‘independent living’, but it is an idea that is at risk of being fatally undermined by the present trajectory of debates about the future of the welfare state on both sides of the political divide.    

‘Aid effectiveness’

I fear I may have already lost some readers who will have judged the idea of the social development state an unaffordable ideal.  After all, with 84 per cent of departmental spending cuts are yet to be implemented, how can I possibly talk about an idea which suggests more services and support at this time?  It is of course always worth reminding ourselves that the 1948 Welfare State was conceived during the Second World War and implemented at a time of far deeper austerity than today.  Nevertheless, the idea of a social development State should not be confused with the ‘Big State’.  The primary features of the social development State would be more judicious spending focused upon social and economic impact, on eliminating bureaucracy and waste, on releasing and optimising all available resources, and on promoting innovation.  

This is because another major lesson to be drawn from the world of international development is that as important as the amount spent on aid, is how aid is given.  This is not to suggest that the major reductions in public spending on services and benefits for disabled people will not have a detrimental impact.   But it is to say that this effect might be mitigated through getting far better value from remaining public funds and from being much more imaginative and willing to harness and draw out resources which lie presently trapped or untapped both within individuals and in the world around us.   

Building and harnessing ecosystems of support

Everybody relies upon a complex ecosystem of interdependent supports and social conditions to get on in life.  Disadvantage and exclusion arises when the ecosystem fails particular individuals or groups.  Yet public policy often fails to seek ways to fix the ecosystem and promote genuine social inclusion.  Rather, its typical response is to compensate people for their exclusion through income replacement and what we call ‘care’.  It is of course a hallmark of a civilised society to secure a basic standard of living for all its citizens.  Nevertheless, the economic situation, coupled with rising demand from both an ageing population and greater numbers of disabled people living into adulthood with so-called ‘complex conditions’ calls us to fundamentally rethink the growingly unsustainable approach of our present welfare state.   A key starting point is to rethink what we mean by ‘resources’, to consider where they might be found and how they can be harnessed.

An often overlooked factor of the agenda of choice and control in public services is that it promotes and harnesses both individual resourcefulness and imagination – a fact acknowledged in international development which encourages disabled people to be viewed as both ‘beneficiaries and agents of development’.  Where once a carer had no choice but to seek so called ‘respite’ each week by sending her husband to a day-centre, which he deeply disliked, she now uses her direct payment to buy a season ticket for a personal assistant to accompany her husband to watch his favourite football team, improving both their lives.   Where once a man with mental health problems, desperate for a job, endured endless prescribed ‘work related activity’ which failed to address his core challenge – deep anxiety during job interviews – now he has a job having used his direct payments to buy in the support of an actor to learn how to manage ‘stage fright’.  The same money is leading to vastly better results, sometimes yielding clear savings in other areas of public expenditure. There are countless other examples of people achieving the lives they wish to lead by being freed of the unimaginative prescriptions of traditional public services and through drawing on a far wider range of ‘resources’ in the community around us. 

To achieve this, the agenda of choice and control needs to be deepened and expanded and through doing so will open the door to ever greater innovation and co-production in the social development State.  Doing so requires not just further roll-out and integration of individual budgets, it also requires attention to the architecture which ensures that everyone can benefit from the opportunities that it provides.   In particular, attention needs to be paid to the availability and quality information and advice and in particular to supported decision-making through investment in independent advocacy and through looking beyond the Mental Capacity Act 2006 towards models which draw on community supports to enable people to exercise their legal capacity such as the Representation Agreement Act in British Columbia.   Such imagination and innovation should equally be brought into local authority and health commissioning processes through the involvement of disabled people and other public service users. 

Genuine social inclusion demands efforts to knit people into ordinary community supports such as via ‘circles of support’ or through initiatives such as ‘Shared Lives’ via which disabled adults come to live with a family rather than move into supported living or residential care.  The ‘Think Local, Act Personal’ initiative is focusing on ‘building community capacity’ to these ends, while in Scotland there is increasing interest in ‘asset-based approaches’.  Business can play a critical role in building community capacity, as the ‘Safe in Doncaster’ (S.I.D.) initiative shows in relation to disability hate crime.  

Inspiration and confidence are key resources.   User-led organisations offer not just the potential of practical information and support, but equally of ideas and confidence.  Peer support could make a significant difference across a range of areas, including employment support and the implementation of personalisation.  It is critically important also in addressing what are called ‘adaptive preferences’ – where people become so conditioned to the deprivation or disadvantage they have endured that it becomes normalised and constrains their expectations.  This was evident in relation to disabled people’s apparent adaption to disability related harassment, as described in the EHRC’s ‘Hidden in Plain Sight’ report, which stood in the way of both recognition and reporting.   It is also evident among people who have led regimented lives in institutions, or who have been subject to the will of their families.  Choice and control is a freedom many disabled people have been routinely denied, and sometimes people need to adapt to having autonomy before they can use it to the full.  

User-led organisations need resilience to stay afloat, to succeed and to expand if this is their goal.  They would seem to be ripe contenders to go down the road of becoming mutual or cooperatives – an idea which is once again enjoying broad political support - but would require technical support to do so.   They will also benefit from a whole new model of commissioning.  ‘Ground-up’ innovation is too often overlooked by ‘top down’ government procurement drives.  This situation could be changed were government to instead behave like a venture capitalist, prospecting for promising ideas which suggest high social returns and providing investment and support to allow such ideas to be scaled up or franchised to others - a ‘dragons den’ for social entrepreneurship if you like. 

Far greater attention needs to be paid to building the receptiveness of the wider community to disabled people’s rights and recognition of disabled people’s capabilities and contributions.   A casual look through the Twitter-feed regarding the Channel 4 programme ‘The Undateables’ reveals attitudes ranging from pity to outright revulsion and hostility.  A recent ComRes poll for the MS Society found that of more than 2,000 British adults, one in five (21%) people think disabled people need to accept they cannot have the same opportunities in life as non-disabled people. I still don’t believe a serious attempt has been made to get to grips with the nature of public attitudes towards disabled people, where they stem from and how they might be changed.   A major, in-depth piece of social research in this area is long overdue and would be a solid commitment for government to make in the forthcoming Disability Strategy.

We have come some distance in the area of accessibility and inclusive design, but have we come far enough?  Many parts of our built and travelling environment remain out of bounds to disabled people.   Hopefully the UK will put its full support behind the idea of a European Accessibility Act.  But we also need to understand why it is that some towns, cities and transport systems have become far more accessible than others, and address implementation gaps, not just grab for further law and regulation.   As far as I am aware, such analysis has not been conducted and hence implementation not benefited from such insight – a clear gap to be filled.

Technological change continues apace, presenting both threats and opportunities to disabled people’s inclusion and participation in society.   How far is the UK investing in the development of new technologies to promote social inclusion?  Positioning the UK in the vanguard of inclusion-enhancing technologies offers as major opportunity for the UK to profit from the expanding markets in many of the West’s ageing societies, placing the promotion of social inclusion at the heart of economic recovery.

A disability red-tape challenge

One of the most significant barriers to innovation and to optimising the value of the resources around us is the sheer amount of bureaucracy which surrounds disabled people’s lives.  Many disabled people face more red-tape than the average small business in seeking the support to lead a basic life and face unacceptable levels of State intrusion in the process.

As with the UK’s own welfare state, the rapid expansion of international aid led to a complex, fragmented and bureaucratised system, increasing transaction costs and preventing money from reaching the intended beneficiaries.  This led donor government’s and aid agencies to recognise that there different requirements and approaches were imposing huge costs on developing countries and making aid less effective.   As a consequence they began working together and with developing countries to harmonise their approaches and then to work together to improve impact.   In UK public policy, personalisation might be viewed as having similar goals, with welcome initiatives such as personal budgets and the ‘right to control’ aiming to cut through fragmented public services.  But these developments have achieved little to address the hugely complex and often contradictory systems of assessment which govern eligibility for services and benefits, nor have they prevented local authorities from imposing administrative burdens on disabled people which stifle autonomy and innovation.   If anything, the implementation of spending cuts and welfare reforms suggest more bureaucracy, not less, as complex – and costly – new systems of assessment, re-assessment and accountability are implemented to ration benefits and services and to apply conditionality.  This is poor value to the taxpayer – which contrary to some media and political rhetoric includes disabled people who use benefits and services - and smacks of big state interventionism.   Furthermore, the new layers of bureaucracy are failing.  40 per cent of all Work Capability Assessments are appealed, and 40 per cent of those appeals are successful.  In most other area of State activity this would be recognised for what it is – administrative failure – as public and media anger over recent issues such as HMRC’s failure to process tax returns showed. 

Away from the benefits system and in addition to systems to ration services, questions of risk create huge levels of bureaucracy whilst impeding disabled people’s freedoms (which of course must include the freedom to take risks).   I recently met a young man who having had an emergency tracheotomy found responsibility for his care had transferred from his local authority to his PCT, preventing him from utilising direct payments and from employing his own personal assistants.  Instead, his PCT – having first proposed he moved into a nursing home – have already spent 5 months failing to organise the care that will allow him return home, confining him to a hospital ward and costing the NHS an estimated £225,000 to date to provide him with a hospital bed which he does not need.   The same man had once had 16 ‘professionals’ visit his home on a single occasion to decide whether or not he could have an accessible wet-room installed.   Families with disabled children frequently report of feeling as though their lives have been colonised by social workers.  In these cases and many more like them, the risk being assessed very often isn’t the risk to the individual, but to the public authority providing the service. 

 

By streamlining assessments and addressing the perverse impact of risk-averse policy and practice I believe we might find that millions of pounds can be re-directed towards improving outcomes at the same time expanding disabled people’s freedom and opportunities.   To that end, in my submission to the Office for Disability Issues ‘Fulfilling Potential’ consultation I proposed that it should emulate the Cabinet Office-led ‘Red Tape Challenge’ which invited small businesses to challenge burdensome regulation, by inviting disabled people to challenge the red-tape and regulation they believe unnecessarily and disproportionately impedes their own ability to get on in life.

We also need to be bold and brave in freeing up resources presently tied in expensive initiatives which have low economic and social value, and redeploy them where the returns can be shown to be higher.   From this perspective the decision to implement recommendations from the Sayce Review makes absolute sense.  Remploy factories employ around 2,800 disabled people, at an annual cost of around £22,700 per person (a total of around £63 million in 2009/10).  This is because they all run at a loss.  Compare this with Access to Work, which helped 37,300 people in 2009/10, at an average cost per person of around £2,600.  It is estimated that for every £1.00 spent on Access to Work, the Exchequer reaps £1.48 in return.   Where else can resources be re-directed and used more productively?

Transparency and accountability

Finally, a key feature of the social development state would be far greater transparency and accountability in relation to how decisions are made, about what outcomes to expect and about how money is spent.

Article 4 (3) of the UNCRPD requires States to involve disabled people in all aspects of implementation of the Convention and it is clear from evidence both in the UK and internationally that involvement in policy and decision making has a transformative effect both on policy design, successful implementation and end user satisfaction.  It was therefore deeply disappointing that the Westminster government took the retrogressive step of removing from the Public Sector Equality Duty the explicit requirement to involve disabled people which existed in the previous Disability Equality Duty.   The Office of Disability Issues needs to regain the initiative on involvement, either through further reform of the PSED or the promotion of good practice.

I was very disappointed at a recent Office for Disability Issues event to hear the Minister for Disabled People say that the government’s Disability Strategy would not be a ‘national action plan’ regarding the UK’s implementation of the UNCRPD, as is the case in Australia.  This represents both a failure of government to be accountable to disabled people in the UK, and a missed opportunity likely to leave government open to criticism by the UN Committee on the Rights of Persons with Disabilities when it examines the UK in the next few years.

As recommended by both the Joint Committee on Human Rights and by the European Commissioner on Human Rights, legislation is required to protect and promote the right to independent living.    Personally (though I am biased) I favour the approach proposed by the JCHR, which combined individual entitlements to assessment, individual budgets and advocacy with a strategic duty on government and local authorities to promote independent living.   Within such a model transparency will be critical, including in relation to how money is allocated via personal budgets as Lucy Series has recently argued.

Last but not least, rights are not rights without redress.  The present reforms to legal aid are a major threat to disabled people’s rights and should be resisted.   Equally, we need to take stock of the way the world is changing and recognise that models of regulation in areas like social care haven’t kept pace with the changing nature of a personalised system.  Top-down regulation needs to be augmented by models of consumer protection as more and more people use money provided to them by the State or their own resources to satisfy their needs and aspirations.

Conclusion – towards a new social contract

The social development State offers a plausible way to re-negotiate the ‘social contract’ between disabled people (and other groups who require support), the State and wider society.   The offer is very simple: don’t lock us in a state of dependency; give us the practical support and resources to participate in and contribute to society.   It is about building society’s receptiveness to the idea of disabled people as rights-holders, with capabilities and contributions to make, not as objects deserving only of benevolence.  It is about overcoming the terrible stalemate presently generated by the rules and rhetoric surrounding a welfare state which no longer aligns either with broad public opinion or with the self-identity and aspirations of disabled people themselves.   And it is about harnessing the resources around us and unlocking innovation to address the major challenges we face collectively as a society in the coming years.

Fundamentally, it is about making the move within the UK from unaffordable and unproductive ‘aid’ to a model of truly sustainable development fit for the future.