Monday, 21 February 2022

The "catastrophic costs" of the new social care funding regime

 If anything shows where the current government’s priorities really lie, it’s the way social care funding is being reformed.  As Baroness Jane Campbell said in a recent House of Lords debate “protecting accumulated wealth has become the overriding goal of reform”.  

For years the ‘problem’ of social care has been framed to be the ‘catastrophic care costs’ faced by some older people who, if they need to enter residential or nursing care, have to sell their homes to pay for it, thus reducing their children’s inheritance. But the catastrophe for many working age disabled people takes the form of years of poverty and a denial of opportunities.  Moreover, a recent amendment to legislation currently going through Parliament will embed such poverty as an integral part of the new funding regime for adult social care.

This new regime, which will be introduced from October 2023, will place a ‘cap’ of £86,000 on what someone will have to pay towards their care. It is being funded by increasing the National Insurance contributions paid by people of working age and therefore disproportionately affecting those on low incomes.  

This is unjust in itself but the government is now attempting to introduce an amendment which would change the way the cap works so that the wealthier you are the more you benefit.

Unlike health care, social care is means-tested and in recent years local authorities have been increasing the amount that people have to pay towards the cost of necessary care. For those who rely solely on benefits, this means anything above a Minimum Income Guarantee has to be used to pay for their support

Initially, the proposed new funding regime assumed that the amount local authorities contribute towards someone’s care would count towards the cap of £86,000.  Now, the government intends that only the amount someone contributes themselves should go towards the cap. A real life example, provided by Inclusion London, illustrates the unfairness of this for those who enter adulthood already disabled.

“A disabled person like Nadia, without assets and minimal chances to enter the labour market and accumulate wealth, must pay for care from means-tested benefits. The Government sets minimum amounts of money people should be left with. These vary depending on age, personal circumstances, and the impairment's severity, starting from £72.40 per week.  

Young adults such as Nadia with high support needs are left with £151.45 per week to live on. With her contribution of £68 per week, Nadia and people in a comparable situation will have to live on as little as £151 per week for 24 years. Only after that would they qualify for free care and be able to keep all of their disability benefits.”

This situation would also apply to anyone who becomes disabled during adulthood.  For example, consider you are a 29 year old, progressing well in your career, still living with your parents but slowly building up savings in the hope that you’ll be able to afford your own home. But one day, out of the blue, you are involved in a car accident which leaves you paralysed.  Once you come out of hospital you find that your job is no longer possible so your only income is disability benefits - which are diminished by the contribution you have to make towards your care costs.   You will be now be condemned to years and years of living in poverty.  And your chances of ever getting a home of your own have disappeared. 

The 2011 Dilnot Commission recommended that : “All those who enter adulthood with a care and support need should be eligible for free state support immediately rather than being subjected to a means test”. Andrew Dilnot repeated this recommendation in the context of the current legislation. But instead, the government has made the new regime even less fair by introducing the new amendment currently going through Parliament.

And it isn’t only people of working age who are getting a poor deal from this new system - whatever age you are, the fewer assets you have the more likely you are to lose almost all of them.  

As Torsten Bell, of the Resolution Foundation said: “Here’s a simple way to think about the problem the government has created: if you own a £1m house in the home counties, over 90% of your assets are protected. If you’ve got a terraced house in Hartlepool (worth £70k) you can lose almost everything”.

The two examples on the government’s own website illustrate how, the more you have in assets and income, the greater proportion of those assets and income you keep. 

The Dilnot Commission’s original proposals rejected the approach the government is taking as it goes against the purpose of a means test - ie ensuring that the fewer resources you have the smaller contribution you make towards your care costs.

So the only thing we can conclude from this is that the Conservative Party has decided that its priority is to protect the accumulated wealth of its core vote.

There are members of the House of Lords who are trying to defend the interests of those who have little or no accumulated wealth.  Their next chance to do this is at Report Stage of the Bill, which begins on 1st March.  We can only hope that they have more success than they have had so far. 

Monday, 8 March 2021

Why have so many disabled people died of Covid-19?


Between January and November 2020, disabled people accounted for a shocking 60% of all deaths recorded from Covid-19.  We might think that this was because of the age profile or co-morbidities amongst this population group but Office for National Statistics analysis indicates that, even after adjusting for these factors the mortality rate was higher than for non-disabled people, and particularly so for disabled women and those with learning disabilities. 

Other factors placed disabled people at risk, regardless of their age or health condition. For disabled people in general, measures of deprivation were the biggest factor accounting for some of the increased risk of catching and dying from the virus while for people with learning disabilities place of residence was the biggest risk factor, “suggesting that living in a care home or other communal establishment was a major factor in the increased exposure of people with learning disabilities to COVID-19”.  

The risk posed by communal settings was also apparent amongst those deaths examined by the Learning Disabilities Mortality Review which found that:


A third (35%) of those who died from COVID-19 lived in residential care homes, rising to almost half of those with Down’s syndrome. A quarter (25%) lived in supported living settings. Priority must be given to supporting measures to prevent the spread of COVID-19 in these settings. 

These are circumstances in which, generally, people do not have sufficient choice and control in their lives.  Care homes and supported living services (group homes) in general have accounted for a disproportionate number of deaths during the pandemic, not only because people were discharged from hospitals without proper testing or isolation but also because of the movement of staff from home to home and the general difficulties of infection control in communal settings (especially when protective personal equipment was in short supply). 

The fact that socio-economic factors accounted for some of the higher death rate amongst disabled people in general is evidence of significant structural inequality. Since 2010, changes to the benefits system - particularly those introduced in 2016 - have had the impact of making disabled people poorer, increased food bank use and driven up debt levels. This inequality and its impact on the death rate amongst disabled people during the pandemic is therefore a direct result of government policy.

Nevertheless, according to the ONS data when all risk factors were taken into account, “a statistically significantly raised risk of death remained unexplained for more-disabled and less-disabled women (1.4 and 1.2 times respectively) and more-disabled men (1.1 times) but not for less-disabled men”.

This raises the question: Are disabled people at greater risk because of unequal access to treatment and healthcare once they become ill?

On March 21st 2020, the National Institute for Clinical Excellence issued a new guideline on who should be admitted to critical care during the pandemic, based on the 1-10 Critical Frailty Scale. The guideline suggested that those scoring seven (severely frail, completely dependent on personal care “from whatever cause, physical or cognitive”) and above would be “unlikely to survive even with medical intervention” and that only those ranked 1-5 should receive critical care.  A focus on what people can’t do for themselves was at the heart of determining whether someone should get access to critical care. So, if a person needed help with all daily living activities, then they were considered too ‘frail’ to benefit from a higher level of care (such as artificial ventilation). The Chief Executive of NICE defended the issuing of this guideline, saying that - although the guideline was developed in only 6 days - an equality impact assessment had been carried out, and:

Despite doing it so quickly, we had a comprehensive set of comments and they were supporting the use of the clinical frailty scale. It was something already in use across the system at that point. We did not hear any concerns about it being discriminatory in relation to disability at that point.

However, an outcry from a number of individuals and organisations and an Early Day Motion laid in the House of Commons resulted in NICE issuing a revised Critical Frailty Scale, which currently states that it should only be used for people “aged over 65, without stable long-term disabilities (for example, cerebral palsy), learning disabilities or autism”.  Anyone, of any age, who had a “stable, long-term” condition, or “learning disabilities or autism” should receive “an individualised assessment of frailty” and the CFS score should not be used. 

This, of course, still raises the question about why the need for personal care because of conditions related to old age should determine access to critical care. For disabled people of any age, it also begs the question: What is meant by ‘stable, long-term condition’? Many people live with progressive conditions for years and previously ‘stable’ conditions are often associated with increasing need for support as people get older.

I am puzzled as to why needing support in your daily life (at any age and for any reason) is evidence per se that you would be unlikely to benefit from being admitted to critical care.  This is the antithesis of what we mean by independent living: the need for support does not mean that you cannot have self-determination or a good quality of life, instead it is having choice and control over the support you need which delivers such things. Neither should the need for support undermine your right to life.  

Yet it would appear that, not only might the need for support determine access to critical care, but it may have influenced whether some people got access to any hospital treatment during the pandemic.

In the early months of the pandemic, there were press reports of DNR notices and advanced care plans being applied across whole groups of people in residential settings.  These included care homes catering for older people as well as group homes catering for people with learning disabilities and/or autism. Reviews of the deaths of people with learning disabilities noted several instances where “frailty or ‘learning disabilities’ were given as rationales for a Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decision for people who had died from COVID-19, yet this was not the case for people who had died from other causes”. The report concluded that “Further reminders that ‘learning disabilities’ or a clinical frailty score are not appropriate reasons for a DNACPR decision in people with learning disabilities may be required.” 

The Care Quality Commission has found that some people living in care homes died potentially avoidable deaths because of inappropriate decisions about treatment.  Some were subjected to blanket decisions ruling out attempts at cardiopulmonary resuscitation, and “providers sometimes conflated decisions about DNACPR with decisions about whether to admit people to hospital or provide covid-19 treatment”.  An Amnesty International report specifically focussing on older people found considerable evidence of inappropriate or unlawful use of DNR notices by GPs, clinical commissioning groups, hospitals, and care homes.

Surely a clinically based decision is an experienced doctor’s judgement as to whether the treatment will improve your chances of survival to a quality of life that you find reasonable, combined with your views as to whether you want to go through the experience of whatever the treatment is itself. And in most cases I suspect that is what happens except that, in the case of disabled (and older) people, pre-existing prejudices about the quality, or indeed value, of someone’s life can get in the way - a particularly dangerous situation when someone has difficulty communicating their wishes, or is not even asked what they are. 

In addition, a failure to enable disabled people to benefit from treatment even once they are admitted to hospital may also help to explain the disproportionate number of deaths.  Jo Whiley, in bringing public attention to the need to prioritise people with learning disabilities for vaccinations also provided a graphic description on BBC Radio 4’s Today programme of the kind of support her sister needed (and initially lacked) when she was admitted to hospital with Covid-19.  She described how her sister’s communication and cognitive impairment meant she was terrified and reacted by trying to escape from staff trying to treat her.  It was only when her parents were allowed into the hospital and were able to reassure and calm her that it was possible to provide her with the treatment that enabled her recovery and discharge from hospital.  

But in how many other cases was there not such a response and happy outcome? Reviews of deaths amongst people with learning disabilities found, “The most frequently reported required reasonable adjustments that were NOT made for people who died from COVID-19 were: the provision of specialist learning disability services in hospital; tailoring care provision to meet individual needs; and ensuring the person was supported in unfamiliar settings by those who knew them.”

This is despite BMA ethical guidelines which state “Doctors should bear in mind that, as public servants, it may be appropriate to make reasonable adjustments for those with disabilities. That could mean permitting a learning disabled patient to be accompanied by a carer even if that is generally prohibited under infection control rules”.

For many many years, disabled people have been campaigning for choice and control in our lives, for the right to self-determination, to have a say in how we are supported, where we live and who with, and for the right to make the most basic daily living choices that most non-disabled people take for granted. We made progress but this was always limited, primarily because of the constraints inherent in the existing systems of delivering support and housing. 

Since 2010 the government has made disabled people poorer, failed to reform and improve social care, and neglected to develop the kind of housing and support services which would have delivered a better quality of life. All in all they have exacerbated structural inequalities and the mantra of ‘work is the best route out of poverty’ remains an insult to those who are not able to work and/or face direct and indirect discrimination.  

At the same time, we have been labelled ‘vulnerable’ with little or no recognition of the factors - which have nothing to do with our impairment or illness - which create socio-economic deprivation, unequal access to healthcare and, in this pandemic, a greater risk of dying.  In the run up to the Independent Living Fund being abolished in 2015, I wrote two blogposts entitled “What’s your plan for people whose lives we apparently can’t afford?” The lack of any plan has had its stark consequences during this pandemic. 

Wednesday, 13 January 2021

Using the law to challenge charges for social care

 A few weeks ago I was reminded that - while we are all focussed on how to survive through the current difficulties - there are yet other struggles that disabled people and their allies are engaged in which have been going on for years and which continue.  The reminder came because of a rare victory against the impact of the failure to properly fund social care. 

The stark facts of the funding crisis facing social care are that some councils “could run out of cash”  and it would require £2.1bn to keep provision at the current levels (allowing for increase in demand) by 2023/4 and £10bn to restore provision to what was available in 2010/11.  

There are many ways in which this situation is impacting on older and/or disabled people and their families.  One is that local authorities are taking more of people’s benefit income to pay for the (often reduced) social care that they have been deemed eligible to need.

This is what happened in Norfolk, resulting in a fight-back from those affected and culminating in a Judicial Review of the local authority’s proposed increases in social care charges.

As Disability News Service reported, the High Court found that Norfolk County Council’s proposed new charging policy discriminated against people with high support needs because they would be charged proportionately more than those with lower support needs.

This court case came about as a result of many months of grassroots campaigning by an informal network which, organised via a Facebook group, grew to over 500 people. Growing such a network is important as the more people involved the more likely it is that someone will come forward who both qualifies for legal aid and who feels strong enough to go through what is usually a long drawn-out and emotionally draining process. 

During the course of campaigning, the group issued Freedom of Information requests to both government and other local authorities.  They discovered that the Department of Health and Social Care has little or no information on how local authorities are using the Guidance and Regulations relating to charging; and that other local authorities are also seeking to raise more money from charges, including by adopting the same changes as Norfolk. This confirms research carried out in 2018 which concluded that charges are a ‘tax on the need for support’. 

The solicitors for the claimant have issued a statement which describes the case and what was challenged. Inclusion London also hosted a webinar with the barrister who argued the case.  However, I thought it might be useful to summarise key details of the judgement in the hope that it might encourage people in other local authority areas to consider whether their Council’s charging policy might also be challenged. 

The case concerned a young woman who had previously paid a charge of £16.88 per week as her means-tested contribution towards the support she needed but who, when the changes were fully implemented, would be charged £50.53 per week.  This would have resulted in an almost 20% reduction in her income which was entirely from benefits.

This increase in charges resulted from two changes proposed by the Council.  The first was to reduce (in three stages) the amount that a person’s income should not fall below (the Minimum Income Guarantee); the second to take into account all of the daily living component of Personal Independence Payment.

Her lawyers argued that “The Charging Policy discriminates against severely disabled people, contrary to Article 14 read with Article 1 of Protocol 1 and/or Article 8 of the European Convention on Human Rights”.

The European Convention on Human Rights was brought into UK legislation by Section 6 of the Human Rights Act 1998, which makes it "unlawful for a public authority to act in a way which is incompatible with a Convention right”.

Article 1 of Protocol 1 of the Convention says that each person “is entitled to the peaceful enjoyment of his possessions. No one shall be deprived of his possessions except in the public interest and subject to the conditions provided for by law…” It has been long established that financial support a person receives from the government, including welfare benefits, falls within this article.

And Article 14 says that “The enjoyment of the rights and freedoms set forth in this Convention shall be secured without discrimination on any ground such as sex, race, colour, language, religion, political or other opinion, national or social origin, association with a national minority, property, birth or other status.”

There were four questions that the Judge in this case had to consider:

  1. Do the circumstances "fall within the ambit" of one or more of the Convention rights?

Both sides agreed that it did.

2. Has there been a difference of treatment on the ground of one of the characteristics listed or "other status"?

Lawyers for the claimant argued that the difference of treatment related to being severely disabled, which they said was covered by the term “other status”.  The judge agreed that being severely disabled was “exactly the sort of ‘personal characteristic’ which has always been recognised as protected from unjustified discrimination under Article 14”.

Norfolk County Council argued that ‘severely disabled’ was not precise enough a term in order to be covered by Article 14. The judge ruled that, on the contrary, this had been clearly assessed and determined to be the case by the fact that the claimant had been placed in the Support Group of ESA and received the enhanced daily living component of PIP.

3. Have two people who are in a similar position been treated differently?

Lawyers for the claimant argued that the charging policy meant that a higher proportion of her income was taken in charges than was the case for someone who was less severely disabled.

This argument rested on two points. The young woman could not work and was therefore entirely reliant on benefits, unlike someone with lower support needs who might be able to work and whose earned income (according to the Regulations) cannot be taken into account when assessing how much they should be charged. In addition, her assessable income was higher because she qualified for the enhanced rate of PIP daily living allowance. 

The Council argued that the charging policy was not discriminatory as it applied to everyone.  The judge said that it was because the impact was different for people who were severely disabled. “The way the Charging Policy is constructed means that, because her needs as a severely disabled person are higher than the needs of a less severely disabled person, the assessable proportion of her income is higher than theirs”.

4. Is there an objective justification for the different treatment?

Norfolk County Council put forward four objectives for its charging policy.  Its main argument was that it was facing a funding shortfall of £39m over three years. It also highlighted an aim of increasing employment amongst people with learning disabilities and pledged to provide £1m of the projected £5m savings into helping to achieve this. 

The judge quoted a previous case which ruled that "Saving public expenditure can be a legitimate aim but will not of itself provide justification for differential treatment unless there is, in the case in hand, a reasonable relationship of proportionality between the aim sought to be achieved, and the means chosen to pursue it (i.e. the measure under challenge)”.

The judge found that the Council did not recognise - in any of its documents or discussions - the bigger impact of the policy on severely disabled people compared with less disabled people. Neither had the Council considered an alternative approach suggested in the Guidance, namely that a percentage of income above the Minimum Income Guarantee could be taken rather than all of it. 

He also said that the impact of the policy on the claimant would restrict her independence which contradicts one of the Council’s stated aims of changing the charging regime.

The judge concluded that “The objectives identified are not sufficiently important to justify discriminating against the most severely disabled as compared with the less severely disabled in order to advance it”.

There were a number of other points which were argued during this case but I’ve identified what seem to be the main ones in the hope that this will help other disabled people, their allies and organisations to identify possible similar challenges to what other local authorities are doing or planning to do with their charging policies.

Some useful links:

Inclusion London’s Disability Justice Project aims to help disabled people use the law to fight for their rights. See, in particular: for information about how councils should carry out financial assessments in order to charge for social care.

How to find legal advice

How to find out if you might qualify for legal aid:

Sunday, 12 January 2020

Another National Disability Strategy...?

A Briefing document attached to the Queen’s Speech presented to Parliament on the 19th December 2019 announced the government’s intention to develop a National Disability Strategy. The announcement  indicated that this Strategy would include housing, education and transport. A forthcoming DWP Green Paper would be about encouraging "employers to play their role in retaining disabled people and people with health conditions in the workplace".  Social care was not mentioned at all - which is particularly unfortunate as current political debate on social care has been confined to how to prevent older people having to sell their homes, with very little consideration of how public funds are currently used or might be better used. 

Those civil servants working on this proposed Strategy might like to revisit the previous national strategy, published 15 years ago, consider what progress has been made, and what lessons might help inform future policy development.  Improving the Life Chances of Disabled People (which I worked on as part of a team in the Cabinet Office) set out an ambitious 25 year aim that:

By 2025, disabled people in Britain should have full opportunities and choices to improve their quality of life and will be respected and included as equal members of society.

There were three aspects of ‘Improving Life Chances’ that disabled people’s organisations particularly welcomed.

The first was a commitment to “mainstreaming disability issues” and to achieve a “step change in the participation and inclusion of disabled people”.  In order for this to be achieved the Strategy set out how disabling barriers to equal access to housing, education, employment, transport, health services must be addressed; identified specific ways of tackling such barriers; and emphasised the importance of the Public Sector Duty to promote disability equality.

The second was the adoption of the definition of independent living as referring to 

all disabled people having the same choice, control and freedom as any other citizen - at home, at work, and as members of the community.  This does not necessarily mean disabled people ‘doing everything for themselves’ but it does mean that any practical assistance people need should be based on their own choices and aspirations.

This definition underpinned the Strategy’s proposals for a new system of delivering the support that people needed - a system which brought together different sources of funding to provide one single pot of resources, a budget that people would have control over and which could take in the form of cash and/or services.  

Eligibility was to be based on “requirements arising from disabling barriers” and budgets would “enable different types of support needs to be met, including personal care; family roles and responsibilities; access to the community, employment, voluntary work, training and education, and leisure activities; and include equipment, personal assistance, transport, adaptations and advocacy.”

Finally, the strategy not only recognised the importance of central and local government involving disabled people and their organisations in policy development and in the commissioning of services, but also contained a commitment that 

By 2010, each locality (defined as that area covered by a Council with social services responsibilities) should have a user-led organisation modelled on existing Centres for Independent Living.

From the 1980s, Centres for Independent Living had been set up in a number of areas by disabled people, primarily to support people using direct payments.  The Strategy envisaged that, at a minimum, these organisations should be funded to provide: information and advice; advocacy and peer support; assistance with self assessment; support in using individual budgets (including cash payments) to meet needs; support to recruit and employ personal assistants; disability equality training; and consumer audits of local services.

Although progress was made on some of these commitments, the financial crisis of 2008 and the ensuing years of austerity to a large extent halted further improvements and much more needs to be done in order to achieve disabled people’s rights ‘to live in the community with choices equal to others’ (as set out in Article 19 of the UN Convention on the Rights of Persons with Disabilities).

There are strong social justice arguments for pursuing such a right.  But we also have to recognise that in the current context there is also a need to make sound economic arguments for policies to deliver this aim.  These arguments fall into two categories: the waste incurred by spending public resources on services which do not deliver good outcomes and, at worst, harm people; and the benefits resulting from investing in people and services which deliver good outcomes not just for the individuals concerned but for society in general.

In order to make our case we need to identify ‘windows of opportunity’ in the current social and political landscape.  Although a few of these may be found in the context of national politics and policies, it is likely that most are to be found within grassroots initiatives and communities - the most innovative and empowering developments have always come from those people (and their allies) whose lives are negatively impacted by a failure to invest in their futures.

‘Upstream’ costs and ‘downstream’ benefits
One of the most powerful, and in the end successful, arguments made by disabled people living in residential care during the 1970s and 1980s concerned the benefits of investing resources to enable them to live in the community with choice and control over how their support needs were met.  A key barrier for many, however, was the lack of suitable housing for them to move into.  This necessitated up-front expenditure on adapting or building such housing and, for many, it took years to persuade councils or housing associations to make such an investment.

Both then and now there is insufficient incentive for government, and after ten years of cut-backs little ability for local Councils, to make up-front investments in either housing or in community support services which would in the longer term both save money and improve the quality of people’s lives.  A key current example is the money tied up in expensive placements of people with learning disabilities and/or autism in so-called Assessment and Treatment Centres which makes it difficult to develop the community-based services which would deliver better outcomes and, in the medium to long run, would be likely to cost less. (See Note 1)

Fifteen years ago, the Life Chances strategy suggested an ‘invest to save’ approach in recognition that budgets currently tied up in institutional and/or disempowering services cannot be reduced unless additional up-front funding is provided for community-based services promoting choice and control in people’s lives.  When the Office for Disability Issues was set up following publication of Life Chances, we tried to persuade Treasury to take this approach in the 2006 Spending Review, but only managed to secure funding for a small number of projects which aimed to identify the costs and benefits of independent living.  The lessons of these - which involved support to parents with learning disabilities; independent advocacy; choice and control for older people - were lost in governments’ responses to the financial crisis of 2008.

Since then cost/benefit arguments about ‘invest to save’ have generally been confined to what steps can be taken to result in future savings to the NHS.  For example, how housing with support can make it possible for older people to leave hospital or avoid hospital admissions.

Current public and political debate on social care focusses on older people - and even then its focus is the extremely narrow one of whether people should have to sell their homes to finance residential care.  However, although there are fewer disabled people of working age using social care services than older people, total expenditure is roughly the same for each group and the number of disabled people of working age seeking support is increasing

Most of the increase in numbers and costs of social care for disabled people of working age is accounted for by people with learning disabilities and those with mental health support needs.  Yet it is in expenditure on these groups that clear examples can be found of unnecessarily high costs being incurred as a result of insufficient and/or inappropriate support being provided at earlier stages.  

A failure to adequately meet the needs of those who are born with or acquire physical and/or cognitive impairments and/or mental health difficulties not only results in poorer outcomes for individuals and their families but incurs unnecessary costs to society.  The recent announcement (in the briefing on the Queen’s Speech) of “£74m over three years for additional capacity in community care settings for those with learning disabilities and autism” is to be welcomed, as is the continued funding for local authorities to support former recipients of the Independent Living Fund.

However, neither of these announcements recognise the full extent of the benefits to be gained by ‘upstream’ expenditure to reduce ‘downstream’ costs.  For example, people with learning disabilities were the largest group amongst those in receipt of Independent Living Fund grants and the government recognised they would be particularly likely to be disadvantaged by its closure.   While funding for existing recipients has continued since the ILF closed in 2015, an increasing number of people who would previously have been able to look to the Fund are no longer getting access to the resources needed to enable them to ‘live in the community with choices equal to others’.  How many of those now in expensive long-stay hospitals would previously have received an ILF grant to enable them to remain living in their own home?  

A failure to invest in accessible and adaptable housing also results in unnecessary costs and a denial of the right to a private and family life for the 20% of people with a newly acquired spinal cord injury who are discharged from hospital to a care home.  How many of these would have instead been able to return to their lives, families and friends if we had invested in accessible housing? Last summer the Minister for Disabled People announced the government’s intention of consulting on requiring all new dwellings to meet the currently optional ‘accessible and adaptable’ standard in Building Regulations. However, there has been no further mention of this in recent government announcements concerning building regulations reform.

These are just two examples amongst many. The national policy debates on both social care and on housing need to be informed by the potential for making a better use of public resources by considering taking a longer-term, and cross-government, approach to outcomes. Debates on NHS funding and policy are often dominated by a preventative approach; while this is sometimes spoken of as the aim in social care, the reality is that rationing of scarce resources results in lower level needs remaining unmet with long-term consequences for both health and well-being.  Whatever new funding proposals are developed for social care, they must enable an ‘invest to save’ approach.

‘Top down’ diktat or community-led initiatives?

The current Prime Minister stated his intention to ‘fix the crisis in social care’ . Bryony Shannon has detailed everything that is wrong with this statement - the biggest problem being that it is “echoing the paternalistic approach that social care needs to move away from. He is taking charge, exerting his authority from ‘the steps of Downing Street’ and ‘doing-to’ us, the public.”    

In contrast, the Social Care Future movement is reframing the issue of ‘social care’.  This is a growing network of “people with lived experience, families, professionals, managers, support providers, user-led organisations, politicians, commissioners, community groups and others”.  They have come together to co-write a common aspiration:
We all want to live in the place we call home with the people we love, in communities where we look out for one another, doing the things that matter to us and with the peace of mind that should we, our families or neighbours need some support from public services to do so, that it will be there for us.

In contrast to the current social care system generally only responding to care needs when they become acute, initiatives which come from communities are commonly identifying needs which, if responded to, prevent or delay the development of greater need.  As research on community-led social care services found, these services are not only preventative, but also create good jobs - another key aspect of the sustainability of any service. 

If reform of social care merely focusses on stopping older people having to sell their homes in order to pay for residential care, it will fail to address the fact that expenditure on meeting the needs of younger disabled people (including disabled children) is already taking up half of the social care budget and is increasing.  Most importantly, it will fail to address the fact that social care resources in general are all too often tied up in services which do not deliver either good outcomes for those using them, nor good jobs for those working in them.

The solution is to harness the resources which exist within communities, to invest in organisations which are accountable to those for whom they provide a service, organisations which seek to care about what people care about and work alongside them to make it happen. 

The empowerment envisaged by the Life Chances proposals contained in the chapter on independent living failed to materialise.  Personal budgets were incorporated into bureaucratic priorities and those people who were intended to benefit from personal budgets had no say in how they were implemented.  It failed because most local authorities did not bring disabled people and their organisations into the heart of implementing personal budgets and commissioning services. It failed because the years of inadequate funding created insuperable barriers to ‘upstream’ investment to deliver ‘downstream’ savings.  It failed because communities were not enabled to develop innovative responses to promote participation and inclusion. 

These are important lessons that both the proposed National Disability Strategy and future social care policy need to address.

Addendum:After I published this blogpost, I listened to a podcast where someone said “If you want to fix potholes, fix social care”. The same evening I read in my local paper of a road with 50 potholes.  When developing the Independent Living Strategy at the Office for Disability Issues, we suggested to Treasury that no spending decisions in one policy area should be made without assessing any consequences for other policy areas. If this suggestion had been implemented, it would perhaps have been recognised that, if you squeeze local authority budgets in the way they have been in recent years, they will soon be able to do little more than their statutory duties - and repairing potholes (and much much else) drops further and further down the list of priorities. And of course potholes have consequences for the NHS - when cyclists and motorcyclists end up in A&E. 

Note 1: Social model language would use the term 'people with cognitive impairments' or 'learning difficulties' rather than people with learning disabilities, (and refer to neuro-diversity), and these would be my preferred terms.  However, people who are involved in the struggle against ATUs tend to use the term 'learning disabilities'.  This is often because the legal and policy frameworks within which they are trying to get access to support use this term.

Friday, 5 April 2019

The enduring influence of Mike Oliver

On a number of occasions I tried to tell Mike how influential his ideas were in the context of specific policy developments that I was involved in, such as ‘Improving the Life Chances of Disabled People’, which was the first time the UK government formally adopted the social model of disability. But he was very pessimistic about the direction of both disability policy and also about the impact of his own work, and his response each time was to express frustration at the limited nature of any progress - and to advise me not to leave it too long before I retired (he was right about that!).

But Mike Oliver’s work (much of which is available on the online Disability Archive) was important and influential, and it continues to be, particularly in understanding precisely why progress has been so slow. So many people who are critical of current policies affecting disabled people are using a framework and analysis which stems from his work, but this is not always obvious.

Mike wrote "For me, all social theory must be judged on three inter-related elements: its adequacy in describing experience; its ability to explain experience; and finally, its potential to transform experience.“ His writings achieve all three of these elements and, as a tribute to him, I thought I would look at one particular issue of current concern for disabled people and make the links explicit. In so doing, I’ve highlighted what, to me, are some key aspects of the theoretical framework that makes up Mike’s legacy. 

Before doing that, however, I think it’s worth reminding ourselves of how the social model has the “potential to transform experience” for individual disabled people (the issue of transforming experience at a societal level is discussed below).   I consider myself very lucky that - at the time I became disabled (the early 1980s) - disabled people were increasingly articulating a different way of seeing themselves and which opened up opportunities for collective action to bring about change.  Much of this was down to the liberation that the social model of disability offered.

Liz Crow spoke for many of us when she wrote: 

My life has two phases: before the social model of disability, and after it. Discovering this way of thinking about my experiences was the proverbial raft in stormy seas. It gave me an understanding of my life, shared with thousands, even millions, of other people around the world, and I clung to it……For years now this social model of disability has enabled me to confront, survive and even surmount countless situations of exclusion and discrimination. It has been my mainstay, as it has been for the wider disabled people's movement. It has enabled a vision of ourselves free from the constraints of disability (oppression) and provided a direction for our commitment to social change. It has played a central role in promoting disabled people's individual self-worth, collective identity and political organisation. I don't think it is an exaggeration to say that the social model has saved lives.

The social model of disability not only provides a transformation in the way disabled people have made sense of their lives but it also gave individuals a way of thinking which supported collective action. And often it was reading The Politics of Disablement that enabled them to do this. To take just one example,  Sunny Taylor, a young American woman who became involved in protesting disabled people’s right to personal assistance, read Mike’s book and concluded from it that: 

Disablement is a political state and not a personal one and thus needs to be addressed as a civil rights issue.……In our society it is not the impairment that is the only reason for dependence; it is our impaired system of social services.

There are many contemporary issues which can best be described, explained and potentially transformed by applying the social theory set out in The Politics of Disablement and other writings, and I may write further blogposts to explore them. Here I’m going to focus on just one: the incarceration of people with learning disabilities and/or autism in Assessment and Treatment Units and the failure of current government policy to enable them, as articulated by Article 19 of the UN Convention of the Rights of Disabled People, “to live in the community, with choices equal to others”.

Note: Social model language would use the term 'people with cognitive impairments' rather than people with learning disabilities, and this would be my preferred term.  However, people who are involved in the struggle against ATUs tend to use the term 'learning disabilities'.  This is often because the legal and policy frameworks within which they are trying to get access to support use this term. 

Mike provided us with the starting point for understanding this - and other aspects of disabled people’s experiences - when he argued that disability is socially produced, both as an individual problem requiring medical treatment and as a social problem.  This enables us to move away from the 
individualising of the experience, a feature which is so key to the ideology dominating our current politics and the associated social policies.  

As he explained, “to say the category disability is produced by capitalist society in a particular form implies a particular world view. Within this world view, the production of the category disability is no different from the production of motor cars or hamburgers. Each has an industry, whether it be the car, fast food or human service industry. Each industry has a workforce which has a vested interest in producing their product in particular ways and in exerting as much control over the process of production as possible.”  

We can see today how a whole industry of services and occupations are based on diagnosis and treatment.  It is those working within these services who exert control over, not only how they define the problem but also the responses to what they have defined as the problem.  The ATU part of this industry has grown up in order to treat the product of ‘behaviour that challenges’. People whose behaviour is so characterised are produced as a social problem by the industry and services which have grown up to respond to their needs and that of their families. 

A social model analysis turns the focus from the individual to the context in which they experience their condition. So it is the characteristics of the environment and of support which are identified as a problem, in that they fail to accommodate different requirements associated with, for example, sensitivity to light or noise, or an intolerance of changes in routine, or response to crisis or trauma. Changing the nature of the problem is the first step to acknowledging and respecting the most basic human right to communicate and the fact that, far far too often, our society fails to do this is resulting in incarceration and the most appalling treatment. 

As Alexis Quinn, author of Unbroken, told the BBC’s Victoria Derbyshire Show: 
“When you are moved, and suffered a crisis, for me my brother died and I had just given birth, and you enter a ward which is by nature a very chaotic place, it’s not your routine, it’s unfamiliar, it’s very sensory-charged, it’s very noisy.  Any behaviours that you then subsequently display, autistic behaviours, behaviours to calm yourself down, so it might be pacing, it might be stimming, for example flapping, or something like that, it can be met with force, with restraint, with seclusion….I was locked up in these units [for four years] and my behaviour just got worse and worse and worse until I became what they were describing me to be….I looked insane, my mouth would twitch, my face would contort [because of the drugs]. 

So Mike’s work enables us to understand the production of a social problem which ATUs are designed to respond to, but his work also helps us understand why, despite much hand-wringing by government and media, people are still admitted and remain in them, sometimes for many years.

We need to understand this because there has been widespread recognition that people should not be kept for years in these institutions and yet little has changed. Since the exposure of what was going on in Winterbourne View ATU, by a BBC Panorama programme in 2011, the issue has not only continued to be highlighted by broadcast media but also by campaigners, and by a number of journalists, newspapers and websites.  And government has attempted to respond by setting up a Transforming Care programme with the goal of reducing the numbers of people in ATUs.  The first programme started in 2012 and committed to reducing the numbers of people in ATUs by 2015.  When this failed, a further programme followed, intended to reduce numbers by March 2019.

There have been arguments about whether such a reduction has occurred - with the data made obscure by the fact that the baseline figure against which progress was to be measured had to be revised because people were ‘discovered’ to be in in-patient settings for whom there were no records. But with well over 2000 people still recorded as in-patients,  admissions and delays to moving out continue, and there has been an increase in the numbers of children and young people under the age of 18 admitted to ATUs. The likelihood of significant reductions in the use of such provision by 2023/24 - the government’s latest commitment as set out in the NHS Long Term Plan - is undermined by the fact that new units continue to be built

Many people with good intentions make promises that things will change, and some try hard to create the conditions which enable people to thrive - though too often this is only possible because of the efforts of family members who are let down by health and social care services.  A short BBC documentary about Spencer Kay illustrated so clearly both how responding to someone’s needs enables them to thrive but also how this is often only achieved by family members sacrificing their own needs.  Spencer’s family struggled for decades to keep him out of an institution despite inappropriate and inadequate responses by statutory services.  As his sister says: "Spencer is gentle when you learn what Spencer needs and work out how he is interpreting the world”.

The NHS Long Term Plan made the commitment that:  “local providers will be able to take control of budgets to reduce avoidable admissions, enable shorter lengths of stay and end out of area placements. Where possible, people with a learning disability, autism or both will be enabled to have a personal health budget (PHBs).”  But none of these plans tackle the underlying causes of why we have incarcerated people.  In order to understand what these are we need to apply Mike Oliver’s analysis of how the production of disability is underpinned by the structures and economics of health and social care.

This is not to say that the historical materialism which was at the heart of Mike’s sociology was an economically determinist position.  Rather, as he wrote in The Politics of Disablement: “The point being made here is not that economics determines politics but the more limited one that the politics of social policy is circumscribed by economic considerations”. Since the late 1970s, Britain’s political economy has been dominated by the impact of global capitalism, with governments of all persuasions pursuing policies which expanded opportunities for private capital. One associated social policy was the ‘purchaser-provider’ split introduced in the 1990s within both health and social care which has meant that international finance capital identified profit-making opportunities, resulting in considerable amounts of public money being tied up in purchasing buildings-based services (residential and nursing homes, and private hospitals). 

If Clinical Commissioning Groups and social services authorities are to be able to make available the community-based services to enable people to move out of the mainly private institutional provision that people with ‘behaviour that challenges’ are in, there would have to be initial additional funding devoted to community-based services while money was still tied up in institutional provision.  However, such a requirement comes up against the political ideology determining the distribution of our society’s economic surplus: as The Politics of Disablement explains “societies which produce very large economic surpluses will almost certainly have established elaborate mechanisms of redistribution; but who gets what amount will be significantly influenced by the ideology underpinning this redistribution process”.  

The ideology underpinning the redistribution of our society’s economic surpluses has, since the late 1970s, resulted in the widespread assumption that income taxes must be as low as possible and that taxing wealth is counter-productive. Since 2010 we have had governments whose stated intention is to significantly reduce levels of public expenditure: thus while the Office for Budget Responsibility says the NHS needs a real terms increase of 4.3% per year to keep up with demographic and other changes, funding has only increased by 1.2% per year since 2009/2010; and, although some additional funding has been made available for social care for 2018/19 and 2019/20, official data confirms that this has not made up for the real terms reduction in social care funding since 2010 at a time of increasing demand and costs.

If people currently incarcerated in institutions are to be enabled to “live in the community with choices equal to others”, this requires investment in ordinary houses (not beds in group homes which do not offer ‘choices equal to others’ and which private capital has started to identify as profit-making opportunities).  It requires recruitment and training of workers, support to families, and changes in the communities in which people are to live.  All of this means additional money needs to be spent upfront before the considerable expenditure on institutional care can be withdrawn.  

However, as Mike said, “the politics of social policy is circumscribed by economic considerations”.  This means that, not only does government refuse to provide sufficient resources to enable transfer from long-stay hospitals to community living, but also private capital continues to identify opportunities for creating a surplus out of institutional provision.  And the dominant political ideology ensures that such surplus remains in the possession of private capital rather than being redistributed for the common good.  As Margaret Flynn, who wrote the original report on Winterbourne View, pointed out, that institution was run by a company called CB Care Ltd which was owned by a Swiss-based equity group whose Directors did not pay UK tax.   

The current phase of social care policy places an emphasis on community and family support - posed in seemingly progressive language like ‘strength-based assessments’ and ‘community cohesion’.  This kind of language obscures the lesson Mike Oliver taught us - that political decisions about how the surplus generated by our economy should be distributed mean that individuals and families are not supported in ways which build and support their strengths or ensure community cohesion.  Until we understand that and campaign for the kind of economic and social transformation that Mike envisaged, our society will continue to deny the human rights of far too many disabled people but particularly of those who have the misfortune to be produced as the disability category of ‘people with behaviour that challenges’.