There could be a general election in the United Kingdom in the next year - or this government may stagger on for longer. But whenever it comes, if Labour win, the new government will face a major challenge to start to undue all the harm that Coalition and Conservative governments have caused to disabled people since 2010.
The Manifesto on which Labour fought the general election this summer contained many commitments welcomed by disabled people and our organisations. But it was written in haste and there is now the opportunity to ensure that the next manifesto commits Labour to addressing what the United Nations only last week called a “human catastrophe”. This was the conclusion of the UN Committee on the Rights of Persons with Disabilities when it completed its first review of the UK’s compliance with the UN Convention on the Rights of Persons with Disabilities (CRPD).
Their two major concerns were that previous progress on independent living has been rolled back, resulting in “too much institutionalisation”; and that Deaf and disabled people’s standard of living has been reduced by changes in the benefits system and by continuing unequal access to employment opportunities. The Committee had received damning evidence from the UK Independent Mechanism and also from a coalition of Deaf and disabled people and was not impressed by the UK government’s response.
Labour has a major opportunity to commit a future Labour government to returning the UK to being a world leader in promoting the human and civil rights of disabled people. The UN’s report illustrates that this opportunity can’t come too soon.
The 2017 Manifesto made clear that “Labour supports a social model of disability. People may have a condition or an impairment but they are disabled by society. We need to remove the barriers in society that restrict opportunities and choices for people with disabilities.”
This is a welcome starting point for any government seeking to address the “human catastrophe” we now face. But the policies set out in the Manifesto didn’t go far enough. Labour need to be more ambitious in its aspirations for disabled people - and such ambitions would affect a number of different policy areas.
So here are my thoughts for what needs to be discussed when the next Manifesto is developed - I’m sure others can think of more.
The starting point must be, not just a commitment to recognise and tackle disabling barriers, but also to deliver Article 19 of the UN Convention on the Rights of Persons with Disabilities (CRPD): the right “live in the community, with choices equal to others”.
Labour needs to commit to both the legislation and the provision of services to bring this about. This means:
1. Enshrining Article 19 in British legislation: that is, giving people the right “to live in the community, with choices equal to others”. This, for example, would prevent local authorities and Clinical Commissioning Groups from forcing people into institutional care against their will (which is what can happen when they limit the funding available to enable someone to live in their own home to the cost of nursing or residential care). It would also give people with learning disabilities and/or autism who are incarcerated in long-stay, mostly privately run, institutional provision the right to insist that the large sums of money spent on their care is instead used to enable them to live in the community. It would place a duty on central and local government to ensure that community services are available which enable a real choice - for people of all ages - between living in your own home and residential or nursing care.
2. Developing not a ‘national care service’ but a national independent living service. In other words, to quote a previous Labour government commitment which was never realised, to deliver:
a single community based support system which focuses on all aspects of what people [of all ages] need to maximise their health and wellbeing and to participate in family and community life. The right of the individual disabled person to determine the kinds of services and support that they need will be at the heart of this reformed system.
3. Recognising that social care is not just about older people and residential or nursing care. Forty percent of the total amount of money spent on social care is spent on people aged between 18 and 64 - but you would have thought from recent political and public debate that most people using social care were in their 80s and 90s and that the only issue was whether there were enough places in nursing homes.
4. At the same time, Labour should recognise that older people also have a right to choice and control over their lives and must be included within the delivery of Article 19 rights. The current debate on social care is in danger of becoming entirely about the supply and funding of residential and nursing homes. My aspiration for independent living has not diminished just because I am now past working age. Article 19 rights will be as relevant to me when I am 80 as they were when I was younger.
5. Recognising that, like health care, access to social care should not be dependent on ability to pay. The current system is unjust because it is a matter of luck as to who needs a substantial amount of care when they reach the end of their lives, a matter of luck who has a child born with significant physical impairments or learning disabilities, a matter of luck who has an accident in adulthood that means they need support to continue their life as before. As I said in a previous blogpost, it is an accident of history that social care is not funded in the way that the NHS is. The NHS is funded on John Rawls' principle of the ‘veil of ignorance’ - in other words no-one knows whether they are going to be struck down by serious illness and it is therefore in all our interests that healthcare is funded by a progressive taxation system to ensure that health care is there if and when we need it. That’s also the basis on which social care should be funded.
6. Recognising that the privatisation of social care which followed the NHS and Community Care Act of 1990 has been a disaster. This is not to say that the only or even the better alternative is to bring back local authority care services. Instead, Labour should commit to developing new ways of delivering support services, such as user-led services and co-operatives - not old style charities run by the great and the good with the values of ‘doing unto people’ but non-profit organisations which are truly accountable to those to whom they provide a service. This would also mean developing new ways of commissioning services, bringing service user representatives into the heart of the process and also ensuring commissioning was fully compliant with the Social Value Act.
7. Article 19 rights cannot be realised unless disabled and older people have an opportunity to access housing which is affordable and suitable to meet their needs. Labour needs to commit to updating and strengthening Lifetime Homes Standards, and ensuring that these standards are met in all new developments. The 2017 Manifesto commitment to a new housing ministry which “will be tasked with improving the number, standards and affordability of homes” is welcome but the needs of all types of households must be at the centre of what it does. Labour must also ensure that policies in other areas do not have a negative impact on older and disabled people’s access to housing - in particular, the current government’s changes to the way supported housing is funded must be reversed as they are seriously undermining the financial viability of extra care housing for older people and other forms of supported housing. The under-funded Disabled Facilities Grant system needs a new lease of life: if support to make their existing homes suitable for older and disabled people was available, this would prevent many hospital admissions and moves into residential care. Labour should therefore commit to an expanded programme for enabling disabled and older people to adapt their homes to meet their needs.
8. The commitment to abolish the Work Capability Assessment is welcome. But it must not be replaced with yet another type of assessment based on assumptions which are far removed from the reality of people’s lives. The welfare reform agenda which commenced under the last Labour government is a mess - and the full roll-out of Universal Credit will only make things worse for disabled people. So the commitment in the 2017 Manifesto to “reform and redesign” Universal Credit - and the associated specific commitments - is a good start but the next Manifesto should also be much clearer about the principles on which any reform is based. Here are some ideas, with particular reference to disabled people:
- an ambition of social security in the literal sense - one that delivers the CRPD Article 28 right to an adequate standard of living - should be at the heart of the reform
- a social security system which maintains an additional needs payment for disabled people (although at the same time replacing the current PIP assessment), based on the impact of both impairment/illness and disabling barriers, and which is not subject to a means-test
- assessments which - unlike the current WCA and PIP assessments - are based on disabled people’s own experiences of, and their expertise on, the impact of both their impairment and/or ill health, and disabling barriers
- a social security system which does not penalise people with fluctuating conditions
- a social security system which recognises that some people with significant long-term conditions are unlikely to engage in formal paid employment, and which enables them to contribute to and participate in society in other ways.
9. The current government aims to halve the disability employment gap - an aim which is unrealisable because policies aimed specifically at increasing disabled people’s employment opportunities are not given sufficient weighting as a distinct policy area. Labour should make this a significant area of policy development, co-producing policies with disabled people and their organisations. The 2017 Manifesto committed Labour to commission a report into expanding the Access to Work Programme, but we don’t need a report on this programme - we already know that the funding of equipment, support and other adjustments has proved a valuable way of enabling people to take up and remain in employment. What we need is an expanded Access to Work programme as part of a comprehensive Disability Employment Strategy to deliver the support and adjustments needed - for people with all types of impairment and/or experiences of ill health. This should be entirely separate from the social security system - in order to avoid the focus becoming more about merely ‘getting people off benefits’, a mistake which this and previous governments have made. Such a Strategy should have a major focus on how to make workplaces and working practices ‘fit’ for disabled people and should also learn from the experiences of disabled people’s organisations such as Breakthrough UK about how to support people into sustainable employment.
10. And finally, the Labour Party could do worse than revisit the last Labour government’s Independent Living Strategy - a five year strategy which covered many of the points above, and more. I’m biased because I was its Executive Director but the overall aims remain crucial for any government which seeks to deliver for all its people:
- disabled people who need support to go about their daily lives will have greater choice and control over how support is provided.
- disabled people will have greater access to housing, transport, health, employment, education and leisure opportunities and to participation in family and community life.
There are many policy areas where a Labour government could make a real difference to disabled people’s lives - strengthening anti-discrimination legislation being but one that I haven’t specifically mentioned. The above ideas are just a few which others will undoubtedly want to add to, or criticise and amend. The most important point is that, if a government manages to make Article 19 - the right to independent living - a reality for disabled people (of all ages and impairments) then it will have made major progress in creating a society “for the many and not the few”.
