Wednesday, 21 February 2018

Independent living and the future of social care

This has been posted on In Control’s website as part of their #socialcarefuture debate, where there are a number of other really interesting posts.


I haven't been able to blog for a while but recently two key questions have got me thinking.

The first was a challenge from Catherine Hale, who leads the Chronic Illness Inclusion Project, put to me and a few others: "The term Independent Living" she said, "does not seem to have resonance for people with chronic illness and has been corrupted by those implementing Care Act in the service of cutting costs".

The second was a blogpost by Chris Hatton posted as part of the #socialcarefuture debate.  He asked: Is social care as we know it fundamentally bust?

Linking the two challenges has led me to ask: Is it time for us to admit defeat and abandon the term ‘independent living’ to describe our aspirations as disabled people?  If so, how can we articulate these aspirations in a way which addresses the current problems with social care?  And what would that mean for what we now call 'social care'?

I don't want to focus on the question of whether the term 'independent living' is particularly problematic for people with chronic illness, partly because it deserves consideration completely separate from the question of the current state of social care. However, the second reason Catherine gives for questioning its continuing relevance - the way the term has been corrupted by those implementing the Care Act - is relevant to all groups of disabled people and is directly related to Chris Hatton's challenge. 

So to start by addressing the challenge to the term 'independent living' (but emphasising this is just my attempt to open up debate rather than my firm conclusion):

1. Maybe we have to admit that talking about 'independent living' is not useful to us at this point because we have failed to achieve general acceptance for our insistence that it should mean 'having choice and control over the support needed to go about daily life'.  Instead, many working in health and social care, and also the general public, still take these words to mean 'doing things for yourself'.  Moreover, too often it seems the terms 'independent living' and 'independence' are used to deny the reality of someone's support needs. The rationing of services goes along with an unequal power relationship between the person who needs support and those responsible for funding and delivering it, and can result in a denial of needed assistance in the guise of encouraging 'independence'.  

2. At the same time, we need to recognise that independent living was never just about social care.  Yes, its origins were in replacing institutional and institutionalising services with direct payments which enabled people to employ their own support workers but this didn't deliver what we meant by independent living unless other barriers were addressed: the barriers to accessible, affordable housing, transport, to employment, to participating in family and community life and so on.  This wider vision is reflected in the last Labour Government's Independent Living Strategy which defined independent living as:

Having choice and control over the assistance and/or equipment needed to go about your daily life; and
Having equal access to housing, transport and mobility, health, employment and education and training opportunities.

That Strategy envisaged:

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. We need to return to the roots of what disabled people in the 1970s and 1980s were trying to achieve. When I was carrying out research on independent living in the early 1990s, I consulted with the British Council of Disabled People about what the term meant.  The first principle they identified was that "all human life is of value".  This echoes the UN Declaration of Human Rights: "All human beings are born equal in dignity and rights and all life is of equal worth" which is also, of course, the starting point for Article 19 of the UN Convention on the Rights of Persons with Disabilities (CRPD), the right to independent living.

As the UN's Committee on the CRPD pointed out, "The foundation [of Article 19] is the core human rights principle that all human beings are born equal in dignity and rights and all life is of equal worth".  Article 19, they explain:

has its roots in civil and political as well as economic, social and cultural rights: The right to liberty of movement and freedom to choose one’s residence (art. 12 of the International Covenant on Civil and Political Rights) and the right to an adequate standard of living, including adequate clothing, food and housing (art. 11 of the International Covenant on Economic, Social and Cultural Rights) and to basic communication rights form the basis for the right to live independently and be included in the community. Liberty of movement, an adequate standard of living as well as the ability to understand and have one’s preferences, choices and decisions understood, form indispensable conditions for human dignity and the free development of a person.

This makes clear both how comprehensive the concept of independent living is within the international human rights framework, and also how a denial of independent living is a denial of human rights.  

4. In the current context, where the term independent living has - as Catherine Hale says - been corrupted by those responsible for implementing the Care Act, perhaps we need to frame our aspirations and our demands in terms of human rights. Articulating our aspirations in terms of our human rights would enable us, for example, to see the rationing of support to a level which prevents people from even going outside their own home, or which forces them into residential care, as a human rights abuse.  It would also enable us to see a failure to recognise how someone communicates as a human rights abuse.  Segregation and isolation from family and community would be seen as a human rights abuse as would many other features of the current broken system of social care. 

5.  The answer to Chris Hatton's question is that, yes, social care is fundamentally bust.  This is partly because our society has not chosen to put enough resources into what is currently called 'social care'. We used to talk about how the question was not so much the level of resources put into such services but how the money was used. But we are now in the situation where there is widespread agreement that not enough money is going into social care.  The problem is that this is only being brought home to politicians and the public because of the impact on the NHS and the danger is this agenda will only identify solutions in terms of what social care can do to prevent hospital admissions and delayed discharge.  Instead, we need to ensure that this political and public debate includes a wider vision of community support which enables people, whatever their age, impairment or circumstances, to access their full human rights.

6. But it is not just about the level of resources, important though this is. Social care is also fundamentally bust because we have constructed methods of rationing and of delivering such services which mean they cannot be relied upon to protect and promote older and disabled people's human rights.  Direct payments, the original mechanism which aimed to deliver choice and control, were intended to place decision-making powers in the hands of people who needed support to go about their daily lives.  Personal budgets were similarly intended to empower people who did not want to employ their own support workers but who - through being able to control how the resources to which they were entitled were spent - would thereby have choice and control.  Neither have fully delivered on this vision, partly because it is hard to change the local authority culture which relies on bureaucratic processes to maintain control - and this even harder when budgets are cut back so significantly. And partly because the so-called 'market' in social care is dysfunctional - there isn't a real choice of service provider for either local authorities or self-funders, and one in four social care providers do not even provide 'safe' care, according to the CQC.  Social care is just another privatisation which hasn't delivered. 

7. But, as I wrote in a previous blogpost, the answer is not to go back to state provided services - that doesn't address the power imbalance.  Instead, the answer is to develop 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 community-led organisations which are truly accountable to those to whom they provide a service: support which is designed and delivered for the community by the community. Vidhya Alakeson, Chief Executive of Power to Change, gave some examples of this in her blogpost - and incidentally, Vidhya mentioned that some communities no longer even have a cafe where they can meet “to plan a different, better future” but my community now does thanks to Power to Change part-funding our new community shop and community cafe.

8. New ways of both delivering and commissioning services also require some fundamental changes to how we make decisions about how to raise resources and what level of resources should be put into community-led services. In that previous blogpost I argued that the current system of means-testing social care is unjust because it is a matter of luck as to who needs a substantial amount of care for themselves or a family member. 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.  This is the same basis on which community support services should be funded. Community-led, not-for-profit services should therefore be funded out of our society's collective resources, free at the point of use

9. However, decisions would still need to be made about how to allocate those resources.  We therefore need to think about developing new and more democratic ways of commissioning services. Chris Hatton mentioned participatory budgeting in his blogpost, and there certainly seems enormous potential for promoting deliberative democratic decision-making in both the allocation of resources and in the delivery of support. But we haven't been bold enough yet in this country; instead we have only tried to make gains within existing systems and there is inevitably a limit to which this can bring about real change. We have talked about co-production but even where this enables genuine participation it does not enable control over resources and thus does not tackle much deeper issues about democratic decision-making.  We need to be experimenting with mechanisms which “give people real power to effect change in their lives, communities and beyond”. We need to use an idea like participatory budgeting to give local communities real power to determine how resources are used. 

10.  So my answer to both the challenges posed by Catherine Hale and Chris Hatton, is: let's frame our aspirations in terms of our human rights and let's redesign and properly resource a system which is collectively funded, free at the point of use, and where resources are democratically allocated to forms of support which are designed and delivered by and for local communities.

Thursday, 2 November 2017

Personal Independence Payments: 'Statistical norms' and the fight to come.

In her recent Guardian article, detailing the high levels of complaints about, and problems with, the assessment system for Personal Independence Payments, Frances Ryan says, "None of this exists in a vacuum".  She's referring to the other attacks on disabled people's benefits and services which  have been waged by governments over the last seven years, but there's also a wider, very worrying context that we need to be aware of. 

There are two factors which are creating a great incentive for the government to continue its efforts to reduce expenditure on Personal Independence Payments.  The first is that, although expenditure on incapacity benefits (Employment and Support Allowance) is now a smaller share of national income since 1990 (partly because the value of such benefits has fallen), expenditure on Personal Independence Payments has grown as a share of national income and is projected to keep growing.

The second is that, as the Institute for Fiscal Studies reports, the government's aim of reducing public expenditure - the drastic cuts to public services and to working age benefits which have happened since 2010 - have only brought public expenditure back down to what it was before the financial crash of 2007/8:  “Seven years of cuts have served merely to return public spending to its pre-crisis level as a share of national income”. This is bad news for a government ideologically committed to reducing public expenditure and, combined, with the first point, should alert us to the possibility of yet another assault on disability benefits. 

In these days when disabled people’s civil and human rights are under such attack in the UK that the United Nations has said that a ‘human catastrophe’ is unfolding in our country, it is crucial to remember that one aspect of our social security system is truly progressive - or at least it was in its origins.  The currently misnamed Personal Independence Payment was originally called a Disability Living Allowance, and when it was introduced in 1992 it was transformative in that it recognised that people with impairments or long term health conditions have additional costs in terms of their mobility and daily living requirements.  DLA provided a contribution towards these costs and what’s more it was not means-tested.  It was, like child benefit, a recognition that society should take collective responsibility for the costs that some of its members incurred because this would benefit our society as a whole.  (The origins of such a progressive approach in fact go back to 1972 when Mobility Allowance was first introduced.  This had the same principles but only covered mobility impairments.) 

Unfortunately following the 2008 financial crisis, DLA was a key target for the ‘austerity’ measures pursued by Tory-led Coalition government. The abolition of DLA and its replacement by PIP was clearly motivated by the intention of reducing expenditure - the then Minister for Disabled People told Parliament that she expected that almost 60% of people who were reassessed would either get a reduced benefit or no benefit at all.The aim was to significantly reduce projected expenditure (the amount that would have been spent on DLA without its replacement by PIP) and the government assumed that by May 2018, 607,000 fewer people would be eligible for PIP in comparison with the number who would have been eligible for DLA (see Tables 7 and 8). 

Many people may have forgotten that initially the government proposed to remove the mobility component of DLA/PIP from people in residential care (the care component is already effectively removed for many by being included in the means-test).  They climbed down from that proposal but, since the full implementation of PIP, when it became clear that it would be difficult to achieve the intended reductions, the government have continued to try and reduce eligibility.  First, they tried - unsuccessfully - to reduce eligibility for people who use ‘aids and adaptations’ and then, following a judge’s ruling which recognised eligibility for the enhanced mobility component of PIP for people with mental ill health, the government introduced a retrospective regulation which removed this eligibility

In 2016, the Office for Budget Responsibility sounded a warning that the government’s intended reductions were not materialising. The original forecasted reduction in eligibility was based on DWP’s analysis of 900 recipients of DLA who were reassessed for PIP.  However, the evidence of actual reassessments was that more people are successfully claiming than the sample suggested and, moreover, more are being awarded increased payments.  This isn’t surprising - as anyone might have told the DWP if you reassess people who were on so-called ‘lifetime awards’, most will not only continue to qualify but many who were on lower rates of DLA will now qualify for higher rates of PIP because their needs will have increased as they grow older. 

Expenditure on PIP/DLA is also increasing because an ageing population means there is a built-in increase in the numbers receiving the benefit (which continues to be paid, though cannot be claimed, after the age of 65) and because increasing numbers of children with significant impairments are surviving into adulthood.

The OBR concluded that the government was only likely to save 5% of projected expenditure instead of the 20% it aimed to achieve.  This follows a familiar pattern in that the Coalition government and this current Conservative government have consistently underestimated the numbers of people eligible for DLA/PIP and therefore the amount spent on this disability benefit.  The OBR warned the government that “The history of optimism bias in estimates of the impact of welfare reform is a real cause for concern”. Worryingly for the government this warning was sounded even though, at the time, the OBR assumed that a further cut in eligibility - which would have reduced the numbers qualifying by a further 290,000 - would take place.  In fact the government was forced to drop this proposed rule change thus reducing the intended savings on PIP expenditure even further. 

In the light of all this, and in the light of the recent publicity given to the numbers of complaints and appeals about PIP assessment, the question needs to be asked whether, having failed to cut back on projected expenditure in the way intended, the government has introduced ‘targets’ or ‘norms’ for assessors which is resulting in some unjust decisions about eligibility.  Appeals of decisions are increasing as are success rates. Some people with terminal cancer are being wrongly refused PIP, and there is increasing evidence of ‘discrepancies’ in assessors’ reports.

These allegations sound remarkably similar to those previously made about Work Capability Assessments. Assessments for Employment and Support Allowance did not initially deliver the intended reductions in people qualifying for out of work disability benefits and this was followed by increasing accounts of people being assessed as ‘fit for work’ who patently were not. Accusations were made that the company who at that time was carrying out Work Capability Assessments had been given ‘targets’ by the DWP.  These accusations were strongly denied by the government but Kaliya Franklin showed, if assessments are carried out in the context of ‘statistical norms’ about expected outcomes, these can become part of a management tool for ensuring quality and consistency of assessment practice.  And if ‘statistical norms’ are determined by government priorities to reduce the number of people assessed as eligible then, as Kaliya Franklin argued, this may well lead to the increasing levels of complaints and successful appeals. 

A recent account by an ex-PIP assessor on Radio 4’s You and Yours programme seems to indicate that there are indeed practices being applied which exert pressure on assessors to reduce the numbers eligible. 

It is to be hoped that the Work and Pensions Select Committee, currently carrying out an inquiry into both PIP and WCA, address the question of whether government priorities to reduce expenditure are directly impacting on assessment outcomes. But in the meantime, we need to be aware that attempts to decrease expenditure on PIP are likely to continue, particularly because, as mentioned above, expenditure on this benefit is increasing as a share of national income.  

In the years to come the government may well try to make more fundamental changes to PIP - such as imposing a means-test and/or linking it to unemployment. Interestingly, one of the questions that PIP assessors ask is: “when did you last work” despite PIP being an additional costs benefit and nothing to do with employment status.  Is being in work taken to be evidence of being able to function without restrictions and therefore not eligible for PIP or only eligible for a reduced award?  This might fit in with what David Freud (at that point ‘welfare reform’ Minister) said during one of the parliamentary debates when PIP was being introduced: ”Sickness and disability are best overcome by an appropriate combination of healthcare, rehabilitation, personal effort and social/work adjustments” - does this mean that if you make enough ‘personal effort’ and ‘work adjustments’ you will no longer experience ‘sickness and disability’? When the government tried unsuccessfully in 2016 to restrict eligibility, much of the public debate was dominated by the misconception that, to qualify for PIP, you had to be judged incapable of working.  This is a dangerous message to give in the current climate - and unfortunately continues to occur in current debates on PIP (as illustrated most recently by the presenter’s questions on You and Yours).

Reforms to disability benefits have been and are still being fuelled by a government priority of reducing public expenditure.  John Pring, from the Disability News Service, states that 2016/17 has seen increasing complaints, particularly of dishonest assessors’ reports. Stephen Kinnock MP is only one of several MPs who are seeing increasing numbers of disabled people in their constituency surgeries, recounting experiences of “how claimants are treated, how they are humiliated, belittled and denied basic human dignity”; and  Debbie Abrahams, Labour’s Shadow Work and Pensions Secretary told the Disability News Service that “Labour is committed to scrapping these harmful assessments and replacing them with a holistic, person-centred approach, under our plans to ensure that, like the NHS, the social security system is there for us all in our time of need.”

In the meantime, there needs to be an investigation as to whether government policy to reduce the numbers of people eligible for PIP is resulting in ‘statistical norms’ being applied leading to disabled people being denied an additional costs payment to which they are entitled.  And we all need to beware that - if the Institute for Fiscal Studies and the Office for Budget Responsibility are right - then we may well see yet another onslaught by the current government on the living standards of disabled people.  

Wednesday, 25 October 2017

Accepting injustice: the government's approach to Access to Work

Access to Work is a government programme which funds the extra costs that Deaf and disabled people sometimes have if they are to have the same opportunities to work as anyone else.  For example, it can pay for an alteration to a desk, for text to speech software, for a British Sign Language Interpreter, for supporting mental health needs.

It is the most successful government policy aimed at reducing the disability employment gap, which currently stands at 32%.  Additional funding has been allocated to the programme and it has recently focussed more on helping with more people with “hidden impairments like mental health conditions and learning disabilities”. In 2015, the government announced  “a real terms increase in spending on Access to Work… to help a further 25,000 disabled people each year”.  If the government is to achieve its goal of halving the disability employment gap, then Access to Work has a key role to play.

This sounds like a good news story - and we could do with a few of those these days.

But it isn’t. And the reason it isn't is the same reason that so much is wrong with public policy these days.  Decisions are being made about the Access to Work programme which are not informed by the day to day reality of being a disabled person who needs assistance, equipment or adjustments to enable them to get a job, and to stay in, and progress in paid employment.  And, far from more people being helped by Access to Work, the numbers being helped started to fall in 2010/11 and, despite a recent increase, still haven’t reached the total number who were being helped in 2009/10. (NB. This is a link to the recently revised method of recording data on Access to Work. The statistics given in other documents linked to in this blogpost should not therefore be relied upon as they over-estimated the numbers being helped.)

When the Coalition government came into office in 2010, it commissioned a review of employment support, which found that Access to Work was by far the most successful programme and was valued by both employers and disabled people.  Although the government accepted the general recommendation that Access to Work should be expanded, and did make some additional funding available, it also attempted to increase the numbers helped by spreading the funding more thinly.  It was only after Deaf and disabled people gave evidence to the Work and Pensions Committee that the government was forced to realise that their new rules were likely to lead to large numbers losing their jobs.  Some welcome changes were made to their initial proposals - though not before many Deaf and disabled people were put at risk of losing their jobs.  

However, the government’s focus is still on how to make the existing budget go further.  A guiding principle, set out in the DWP’s ‘equality analysis’  of recent Access to Work changes is to only meet “the customer’s minimum need”.  It is also clear from this document that introducing personal budgets for Access to Work resources is motivated by the drive to reduce ‘high value awards’ rather than a wish to deliver choice and control.

A survey of people’s experiences of A2W, which has just been published, found:

  • poor customer service provided by the re-organised call centres, resulting in delays and errors 
  • more frequent reassessments which could be onerous in terms of time and evidence required, getting in the way of people doing their paid employment
  • increased restrictions on the use and portability of support, especially for people who were self-employed
  • Deaf people faced particular difficulties, with call centres ill-equipped to deal with non-hearing customers as well as measures to drive down the cost of BSL support essential to do their jobs
  • reductions in support, often without sufficient notice.

Many respondents to the survey - some of whom had over a period of years built successful careers supported by Access to Work -  reported “that they were now made to feel ‘like scroungers’”.

A cap being placed on the amount of support a person can receive is a particular threat to the working lives of Deaf people who use BSL Interpreters.  For many it will make full-time employment impossible. As Jenny Sealey, theatre director, told the BBC: “At the thought of having to cut my hours, I can feel me - Jenny - shrinking, becoming this small person, feeling quite terrified of what my future is. I can't believe this is going to happen, it makes me feel quite sick”.  Yet from April 2018, her funding for BSL Interpreters will be capped and she will no longer be able to work full-time (the BBC’s Victoria Derbyshire Show covered the problems with Access to Work in some detail)

The DWP’s equality analysis of its changes to Access to Work recognises that placing a cap on the amount of support that will be funded means that some people may not be offered or may lose their jobs.  They admit that “Some of the cost of support may fall back on employers. There is a risk that this may discourage employers from employing disabled people, increasing the likelihood of unlawful discrimination and reducing equality of opportunity”.  This acceptance of reduced opportunities to work does not sit well with the government’s aim of halving the disability employment gap. It is also a shockingly deliberate increase in the injustice experienced by disabled people.

Access to Work funding is discretionary.  There is no right of appeal, no access to an independent complaints procedure. Whether you get it, how much you get and what type of assistance you get depends on the skill and experience of the Access to Work advisor, and/or whether they feel pressurised to reduce the numbers qualifying or the value of awards.  If you’re unlucky and get an advisor who doesn’t fully understand the particular barriers you face or the ways in which they can be overcome, you may not get what you need.  DWP emphasise that people cannot challenge the amount they have been allocated and can only ask for “one reconsideration” by another advisor. 

This lack of a right of appeal is particularly worrying in the light of Access to Work applicants’ experiences - recounted in the StopChanges2AtW report - which suggest “that ‘value for money’ guidance issued by DWP is being interpreted and applied in decision making by inadequately trained advisers with insufficient understanding of their clients’ needs, and in response to pressure to make savings”.
The government failed to act on the Sayce review’s recommendation that money from existing, and failing, employment support programmes should be re-allocated to Access to Work. Instead, only 20% of the funding previously allocated to the Work Programme and Work Choice has been made available for a new Health and Work programme and the government’s approach to Access to Work continues to be spreading existing resources more thinly.  There remains confusion about how much the ‘real terms’ increase referred to in the 2015 Spending Review will actually be.  That Review said an additional 25,000 people would receive Access to Work awards and the Health and Work Green Paper said that the programme would aim to support 60,000 people.  Currently, 25,020 people receive help from Access to Work - there’s a long long way to go. And current rules and the cost-cutting approach will do nothing to help bridge the disability employment gap.

As the report published by the StopChanges2AtW campaign argues, “When it works well, AtW is a personalized, flexible support scheme which increases choice and control for Deaf and Disabled people over their working lives and their participation in society”.  Unfortunately, a few people sitting in a room in Whitehall have decided that some people’s support needs are just too expensive.  And the current government seems to think it is acceptable to normalise inequality by denying people the support they need to put them on a level playing field with their non disabled peers. 

The only way the Access to Work programme will achieve its enormous potential is if its rules and implementation are co-designed with disabled people and their organisations. Listening to the StopChanges2AtW campaign and taking on board their recommendations would be a good start.

Sunday, 3 September 2017

Disabled people and the next Labour Party Manifesto

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-eight 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”.