‘It always seems impossible until it’s done’ Nelson Mandela
More disabled people with qualifications, in jobs, out of poverty, healthy, in control of their lives, living in safety and security, included and taking part in all areas of society… the goals remain the same, but how might the disability rights agenda be renewed in the light of the tectonic social and economic changes facing Britain and the world?
A future imagined…..
A renewed commitment to ‘equal citizenship’
The vision of the Disability Rights Commission of a society in which all disabled people can participate fully as equal citizens will be restated. The UN Convention on the Rights of Persons with Disabilities will provide the foundational principles, a programme for action and a framework for State accountability.
There will be a redrawing of the relationship between disabled citizens, the State and society – with disabled people empowered to exercise individual agency and self-direction, expected to participate in all areas of life, to enter into reciprocal relationships and networks, and with the freedom and support to do so.
Social connectedness will be a key success measure of policy and practice.
It will be widely accepted that disabled people have the right to be in the world. All forms of congregate living, working, learning and leisure which segregate disabled people from the wider community will be viewed as temporary and ultimately undesirable. Action to open up communities, workplaces, schools and colleges and cultural life will be centre stage in a purposive disability rights agenda. This will not simply be about transactional matters of institutional accessibility: it will equally be about the opportunity for disabled people to gain access to social networks – to relational and associational life. Through doing so we will begin to make genuine social inclusion real and secure the social embeddedness via which self-directed lives can be fully realised.
To do so we will develop or scale up ways to promote receptiveness to disabled people’s inclusion among the wider community and to move from models of support which seek to supplant everyday relationships with ones which facilitate their development. Networking and connecting people will be a core objective with social connectedness between disabled and non-disabled children and adults and the receptiveness of the wider community (measured in terms of attitudes and behaviours) a key success measure.
Investment, not welfare
Disability rights has always required more than a safety net, which is why despite so many positive developments in the UK over the past two decades there was, even before austerity, a major weakness in our approach.
The deficit based welfare state will be replaced by a strength based approach which brigades together resources to invest in human development. It will concentrate on building people’s resilience and readiness, nurturing their willingness and interests, investing in their capabilities and supporting people to participate, contribute and grow.
This will require a profound set of changes in the assumptions underpinning the way public resources are understood and in how they are organised and targeted, a process of transition which will be managed via a partnership between disabled people and government and which will require particular effort to build wider public support (see below regarding values and frames).
Power will be exercised by disabled people and their appointed advocates to self-direct their own support in order to be the author of their own lives. The State and professionals will get out of the way, we will improve on existing approaches such as personal budgets and there will be investment in choice and control infrastructure including advice, peer support, advocacy and social networks (coordinated by local access to living centres – see below).
An investment State will nurture individual agency and through doing so harness the innovations of individuals and their appointed advocates to generate new solutions, about which there will be few restrictions. People requiring public service support will be actively involved in commissioning it, in its delivery and its evaluation, monitoring and inspection.
A decisive shift from the high costs and perverse incentives imposed by the liability-driven culture of adult safeguarding will give way to a liberating model of ‘supported risk taking.’ The right to make mistakes will guide policy and practice. Active consideration will be given to bringing the Mental Capacity Act into line with Article 12 of the UNCRPD.
Integration integration integration…
To facilitate this, we will re-purpose and then integrate health, social care, benefits and employment support around an individual unified ‘access to living’ scheme, over which disabled people should have control.
New institutional architecture will be established to support this in the form of local access to living co-operatives, led by a partnership between disabled people and local statutory partners. They will coordinate the ‘choice and control’ infrastructure mentioned above, help people to manage their support and finances and offer opportunities for people to pool their budgets to create their own collective solutions.
To both optimise the use of resources and promote autonomy there will be a major drive to de-regulate, cutting back the current web of red-tape and bureaucracy which plagues disabled people’s lives and which wastes £millions of public resources. All existing and proposed assessments, monitoring regimes and other forms of red-tape will have to meet stringent tests of justification, in the same way as those concerning business. Public spending cuts will take an ‘administration first’ approach.
Inclusive growth strategies
‘Welfare to work’ as an organising principle will be abandoned in favour of the development of ‘inclusive growth strategies.’ These will focus on tackling the strong relationship between disabled people’s unemployment and poverty and regional disparities in economic performance and growth.
Such strategies will be localised, connecting the agendas of economic regeneration, support for business, job creation, skills and employment support. They will be led locally by partnerships of local councils, businesses, education and training providers and disabled people’s organisations, with support from regional growth agencies and nationally by the Department for Business, Information and Skills or its replacement. Should plans for Universal Credit press ahead, the remaining elements of DWP might be merged with HRMC.
All ‘Employment support’ should be tailored to the individual, overwhelming while ‘in-work’, with disabled people and employers fully involved in shaping and commissioning the support, as required.
Tackle the causes and consequences of the extra disability-related costs of living
The extra costs of living faced by many disabled people, that create significant barriers to participation, will be the focus of a comprehensive strategy which aims to address both their causes and consequences.
This will include action to regulate costs disproportionately faced by disabled people such as high energy bills, as well as to reduce disability specific costs such as expensive disability related aids and equipment, for example through the use of government buying power (as happened with digital hearing aids), or the promotion of greater market competition via initiatives such as Really Useful Stuff. Opportunities to reduce or cut VAT altogether on some products and services will be explored.
There will be a major national drive to develop inclusive, affordable travel options, reflecting the different circumstances of urban, suburban and rural environments.
Local councils will be prohibited from taking account of benefit income provided to disabled people to cover extra living costs in their charging policies. Serious consideration will be given to making integrated public service support (see above re the Access to Living scheme) free to everyone first requiring it under the age of 65. Disabled people receiving public service support will no longer be unfairly financially penalised for saving, building up a pension or accepting a redundancy package.
A major review will investigate in detail the nature and scale of the additional costs of disability and propose how they should be addressed. This will lead to a new disability-related costs allowance which will be a priority for future investment.
The inclusive Innovation nation
Continuing the inclusive growth theme, government will seek to position the UK as a European and world leader in inclusive products and technology, supporting research, development, innovation and start-ups. Mainstream British manufacturers and service providers will be given incentives to develop inclusive products and services, such as a specific kite mark or tax breaks. It is expected the European Accessibility Act will make progress this year – the UK will get ahead of the curve in promoting and supporting its implementation, with British experts providing advice internationally.
Changing behaviours and understanding why change happens
A major investment will be made by disability organisations, think tanks and public bodies in understanding how to change behaviours and make change happen across a range of issues and areas. This will include changing employer behaviours, promoting inclusive environments, goods and services and tackling prejudice and hostility.
The present, lightweight, ‘Disability Confident’ programme will be replaced by an approach employing behavioural science and mirrored on initiatives such as ‘Trading for Good’ which seeks to foster positive behaviours among small employers through a platform offering clear market advantages for doing so.
Comparative analysis will be conducted to understand the reasons some service providers, or local councils, have gone much further in adopting inclusive design and practices than others, to identify what promotes or inhibits good practice and a ‘change management programme’ will be developed and delivered to motivate progress.
A major study will seek to get under the skin of attitudes towards disabled people and to understand what influences them. The Equality and Human Rights Commission will carry out a major programme focusing on public bodies, including government, with respect to their duties under s149 Equality Act 2010 to promote understanding and tackle prejudice (also see below regarding a positive story of change).
The big disability organisations will collectively invest in a programme of strategic litigation, spanning access to goods and services, employment discrimination and independent living.
Be the change you want to see in the world
It’s time for the big charities and providers to walk the walk, not just talk the talk. They must ‘be the change they seek in the world’, and make a decisive shift from institutional forms of provision to leading the way on designing, piloting, evaluating and promoting empowering and inclusive services and practices.
Yes that means you Scope, Leonard Cheshire, Mencap, RNIB……. Leading by example and showing what’s possible should be your primary role in the 21st Century, just as it was when you were founded.
Likewise, some professed campaigners for disability rights need to get their story straight and stop confusing paternalistic welfare or segregating arrangements with rights and equality.
A positive story of change – new narrative, values and frames
A new positive story of change will be developed and communicated in a coordinated fashion by disability organisations and their allies. It will be grounded in values and a deep appreciation of how to influence public opinion through the use of compelling narratives, messages and frames.
It will speak of disabled people as equal citizens, with rights and responsibilities, use the language of investment and contribution, raise expectations and challenge stereotypes and prejudice.
UN Committee examination
Starting this September (which means getting ready yesterday) the UN Committee on the Rights of Persons with Disabilities will commence its first examination of the UK, which it is likely to complete in advance of the 2015 General Election. This truly is a window of opportunity not to be missed, making legitimate a public debate between now and the election regarding the state of disability rights in the UK, placing rights (rather than welfare) back on the agenda, and ensuring that the UN Committee makes the best informed appraisal of the situation facing disabled people at this most optimum of moments.
Disabled people’s organisations will rise to the challenge and the 2015 examination will be a major turning point for disability rights in the UK.
In the meantime, a very Happy New Year