“Experts by experience”?

A group of ‘experts by experience’ have developed a series of proposals for the reform of social security.  I’ve just been listening to their presentations.  They claim that

“Commissioners as Experts by Experience cut through organisational and interest group silos and fragmented debates about poverty, instead providing a holistic perspective, with an ability to focus on fundamental core issues and anchored in lived experience of the system.”

I don’t think that’s borne out in practice.  The Commisson’s principles, asking for dignity, respect and adequate benefits, are unexceptionable.  The point which set the alarm bells ringing for me, however, was the proposal to replace PIP with a different benefit to meet the costs of disability. If we look now at the rules for PIP, or at the previous rules for DLA, we should be able to see that the assessment is not an assessment of costs; that the levels of benefit are not related to the costs, but to the severity of the disability; and that another service which does consider the costs, as part of the social care system, has a different reach and scope to these  benefits.  The idea that PIP was meant to meet extra costs largely began with the introduction of DLA, 1993-94.   But the benefits it was based on – Attendance Allowance and Mobility Allowance  – weren’t there to meet extra costs.  Attendance Allowance, despite the name, was always a benefit for severe disability rather than attendance as such, and it was explicitly introduced (in 1970) to supplement the depressed incomes that people with disabilities had to suffer over the long term.   That’s an important principle, that we shouldn’t lose sight of.

When people claim to be ‘experts by experience’, it seems to chime with a lot of the ideas that have informed participation and diversity in the development of policy.  The central claim, which I have no problem no problem with, is that people with disabilities have expertise relating to their own disability.  That squares with one of the central propositions that has guided social care policy in recent years: Nothing about me, without me.  There’s an influential literature about user participation in policy-making.  Over the years, I’ve done a certain amount of work, as a researcher and policy analyst, based on the principle of empowerment.   A lot of qualitative research consists of listening and recording what people say, and I’ve mentored groups of people in poverty undertaking participative research projects, so that they can do as much.  That’s less a matter of expertise than of attitude: valuing what people say, treating it seriously, conveying people’s feelings and experiences in their own words.   

The claim to be ‘experts by experience’, however, goes some way further than that.  The group  which has formed these proposals had drawn on a combination of people with disabilities and community activists.  The idea that they are “expert” appears to stake a claim that people with  personal experience  have an expert’s general understanding of people with different personal experiences from theirs.  And there, with regret, I must beg to differ. There are three evident problems.  The first is that a group of this kind can’t conceivably represent the range and diversity of experiences out there.  Most benefits go to pensioners: this is a group which is largely of working age. Most unemployment is transitional. Most people with disabilities don’t identify themselves as disabled: they’re ‘managing’, or ‘not really disabled’, or disabled ‘sometimes’. The claim to ‘expertise’ dispenses with the need to cover the range of experience.

Second, activists are different.  This is well-known in political research, where the views of activists are always a bit more pronounced than the mainstream – that’s why they’re activists.  Activists in social security are more likely to be long-term recipients, from which it follows that they’re also in situations that change less rapidly than many others, in more unpredictable and precarious situations.

Third, the kind of ‘expertise’ that people develop is typically formed in relation to current policies and politics.  Claimants’ understanding of the arcane systems they’re being asked to comply with are conditioned by the current shape of benefits.  Very few people will know or remember that there were once earnings-related Unemployment Benefits, or higher rates of Invalidity Benefit for people who suffered disability at an earlier age, or a One Parent Benefit, or a Non Contributory Invalidity Pension; this kind of option disappears from view.

We need, of course, to take the voices of claimants seriously.  They have a right to be heard, and information we can’t obtain without engaging them.  Calling them “experts by experience”, however, is not the way either to get the greatest level of participation, or to get to the meat of a policy.

More money for residential care? The system needs reform first.

There’s a debate raging about how to pay more for ‘social care’, but it’s mainly a debate about how to pay for the largest cost, which is the price of residential care.  A year in residential care can easily cost £40-50,000. It’s residential care that is most likely to eat up all a persons’s savings, along with the value of their house.

Unfortunately, the finance of residential care has been based in a deeply exploitative model, and the conduct of a few of the largest providers, while legal, is open to question in terms of the use of funds, the stability of the operation, and the quality of the service provided.  I’d recommend a critical report from 2016 by Burns and others, called Where does the money go?  They explain how a complex series of financial transactions have been used to milk the system of money, and most of it finishes in tax havens.  Operational companies, which actually provide the care, are separated from property companies, which charge them rent.  The operational companies are loaded with debt at excessive rates of interest, paid to finance companies.  Management services are subcontracted to other companies within the group.  And so it goes on.  The authors comment:

Putting more money in to the system via higher weekly payments per bed will not produce a robust and sustainable care home sector when the financialised providers are so adept at taking money out.

 

Work in progress

In the course of the last year, I’ve spent much of my time writing two books.  I have just sent the final copy of the first to Policy Press, who will be publishing it early in 2022. It’s called How to fix the welfare state, and it reviews a series of problems and issues in British social services. It’s a personal take on the welfare state; I had things to say, and thought it was time to say them. Each of the chapters in the book outlines the structure of services, the impact of some false and misleading narratives, and the real problems that need to be addressed. The book outlines where approaches to the services have gone wrong, and makes suggestions about what they need to do to get things right.

I can be reasonably confident that this won’t be my last book, because the second is virtually finished.  It’s a work of general political theory, called, for now at least, Government for the people. It looks at the way the role of governments around the world have changed to take on responsibility for public welfare.

 

The government embraces the Equality Act – in a way

While preparing to ease lockdown, the Prime Minister’s office has issued this threat, reported in the Guardian: ‘Businesses that chose to enforce mask-wearing would need to take legal advice on their responsibilities under the Equality Act, Downing Street said.’ It appears that ‘equality’ consists of exposing vulnerable people equally to the kinds of risk otherwise experienced by football supporters and anti-lockdown protests, and firms that decline to do this have to take legal advice to defend their actions.

Some reflections on ‘ethnic disparities’

The report of the Commission on Race and Ethnic Disparities is a long, dull read, and it’s taken me three goes to force myself to the end of it. They argue:

“Put simply we no longer see a Britain where the system is deliberately rigged against ethnic minorities. The impediments and disparities do exist, they are varied, and ironically very few of them are directly to do with racism.”

Lots of public comment has beaten me to the punch, and I’m not going to try to give an account of everywhere it goes wrong.  There are four key problems with the line they take.  The first, quickly identified by Jonathan Portes, is the extraordinary definition of ‘racism’.

The Commission … proposes the following framework to distinguish between different forms of racial disparity and racism:
1. Explained racial disparities: this term should be used when there are persistent ethnic differential outcomes that can demonstrably be shown to be as a result of other factors such as geography, class or sex.
2. Unexplained racial disparities: persistent differential outcomes for ethnic groups with no conclusive evidence about the causes. This applies to situations where a disparate outcome is identified, but there is no evidence as to what is causing it.

There are only two kinds of racial disparity: those which can be explained by other means, and those where there is no conclusive evidence.

The second point was nailed by Tom Newton-Dunne, who obviously got through the report quicker than I did.  He identifies one early comment as central:  “As our investigations proceeded, we increasingly felt that an unexplored approach to closing disparity gaps was to examine the extent individuals and their communities could help themselves through their own
agency, rather than wait for invisible external forces to assemble to do the job.”  That is the report’s approach in a nutshell – it is only when one moves on to later sections that its importance becomes clear.  As I read through, with growing disbelief, the Commission’s readiness to condone stop and search by the police  – it’s not racist, apparently, but the poor police have become “society’s punching bag” (p.190)  – I had the strong sense that the message to minority groups had become: stop whingeing and behave  yourselves.

The third point rests in the definition of ‘institutional racism’, a term which is

applicable to an institution that is racist or discriminatory processes, policies, attitudes or behaviours in a single institution.

Some discrimination is direct. If people within an organisation are empowered and able to behave in a racist manner, there’s something wrong with the processes that allow them to do that.  The vetting of tenants, GP removal of list patients and adverse selection of job applicants are examples.   And if those processes are permitted to continue despite the evidence that they are working in a racist way, there is clearly an institutional problem.

Some discrimination, however is indirect – a term which exists in our laws, but doesn’t feature in this report at all.  If the system is not ‘deliberately rigged’, they seem to be arguing, it’s not racist.  Some processes can appear to be neutral while repeatedly producing disadvantage.  Processes such as exclusion, stop and search and the operation of the criminal justice system do that.  And that is  waved aside in a report that is determined to locate the source of problems in the action of individuals.

The fourth problem lies in their emphasis on finding ’causes’. If causes are complex, addressing them one by one is not an effective way of changing the pattern. If they are unknown, that’s no excuse for inaction.  The way into a problem is rarely the way out of it.

Lastly, a minor irritation.  This is a personal blog, and it’s hard to pass over a report like this without riding a personal hobby-horse.  Students, we read, “should be taught about all famous and important people in the society” (p.91)  Paupers, peasants, prisoners, soldiers and slaves aren’t typically famous.   I think it would do this country a power of good if students learned less about kings and queens and rather more about the lives of the people who came before them.

‘Greed is good’, revisited

Boris Johnson’s claim that the vaccine programme is a triumph of self-interested ‘capitalism’ has been roundly condemned; I don’t think I need to explain why it’s simply not true in this context.  It has spurred me, however, to come back to the broader argument, that we owe our prosperity and living standards to private enterprise.  That argument has been vigorously restated in support of Johson, for example by Rod Liddle in the Sun: “this is what brings about progress in society”.

It’s an argument that goes back at least to Mandeville – private vice leads to public benefit – but it’s most often cited from Adam Smith:

“It is not from the benevolence of the butcher, the brewer, or the baker that we expect our dinner, but from their regard to their own self-interest. We address ourselves not to their humanity but to their self-love, and never talk to them of our own necessities, but of their advantages”

That much is clearly true, as far as it goes; I do not want to take anything away from it. However, it’s only one aspect of our current standard of living in the UK.

If we look back at the things that have made our lives better than it was in Adam Smith’s time,  there are a few other things to consider besides butchers and bakers.  First, there’s the fabric of public space: roads, drains, pavements, street lights. Second, there are the standards and services that govern our private space: housing standards, sanitation,  sewerage, waste disposal, water supplies, and energy supply.  Third, there are the services and facilities which shape our daily lives: education, health, social security, and housing.   (The last one on the list deserves a reminder: we built six million council homes, and most of them are still standing even if they’ve been privatised or transferred to new management.)

It’s become commonplace for the advocates of free markets to claim that we owe everything to private enterprise.  That claim is false.  In some cases, governments paid private enterprise to provide goods and services; in some cases, such as agriculture or energy supply, they kept services going that would have collapsed otherwise; in some cases, they produced the goods directly.  All of the examples I have given were, at least to some degree and in some cases predominantly, the result of collective social action.  Not private enterprise, not self-interest, but government.

The problems with behavioural genetics are far from being resolved

An article about behavioural genetics has attracted a certain amount of attention from people who believe this sort of thing.  The article, by Paige Harden, is trying to rehabilitate this research, which has an appalling record.  The study has been tainted by fabrication and fraud.  And, of course by mass murder.  (There’s a good history in Carlson, 2001, The Unfit.)

The search for evidence that genes determine behaviour has lasted about 150 years, and still has a long way to go.  No-one has been able to establish any real proof that any of our behaviour is genetically determined.  However, that last point is  disputed by the keepers of the faith.  Harden writes:

“A meta-analysis of results from 50 years of twin studies … concluded in 2015 that genes do, in fact, make a difference for these types of social and behavioural outcomes – for people’s cognitive ability, personality, sexual behaviour, educational attainment and income. In fact, this finding is so consistent that it’s long been enshrined as the ‘first law of behavioural genetics’: everything is heritable. That is, variation in every aspect of human psychology and behaviour, and variation in every social outcome that’s influenced by one’s behaviour, is influenced by the genetic differences among us. Despite making different assumptions from twin studies, GWAS [genome-wide association study] results converge on the same answer: which genes you happen to inherit from your parents makes a difference for socially valued life outcomes, such as how far you go in school.”

Let’s take this apart.  The first thing to note is the claim that genes ‘make a difference’.  That is plausible enough, but it slides into a different argument as the article goes on: that “genes have causal power for people’s lives.”   That’s rather more than making a difference.  In the study she cites, the authors claim to demonstrate that genetics account for up to 13% of the variance in educational attainment.  Put that another way: at least 87% of the variance is not associated with the genomics.

The central problem with the claim that this has ‘causal power’ is that genes don’t actually determine development; they only establish a pattern.  The article that the author cites on the ‘laws’ of behavioural genetics comments:  “ Development is fundamentally nonlinear, interactive, and difficult to control experimentally.”  Just so – but it’s development that really matters.  Take, for example, the case of height.  That, according to Harden, is down to “the environmental and genetic accidents of one’s birth.”  Well, not quite.   Height is not set at birth. It’s the product of a phenotype – the cumulative development of a human body, conditioned by its genome, in its interaction with the environment.   There are exceptions, at the extremes – but they are exceptions. We know that people have been getting taller in every generation; that would not be possible if height were fixed by the genes.  We also know that people who are not well fed are liable to be stunted; that would be impossible, too.  Height is influenced by genes but is not determined by them.    And we should expect nothing more than that to be true of any developmental factor – such as weight, language development, sporting prowess or academic attainment.

The second problem lies in the idea of ‘heritability’.   In animal breeding, heritability is generally put down to genes, because the main differences between animals that matter to breeders are probably those conditioned at birth.  We don’t breed humans for their physical attributes, and there are a few other differences.  Human behaviour isn’t hard-wired – humans have fewer genes than most complex animals, and we should expect (and can observe) fewer inborn, instinctive behaviours.  The relative lack of fixed, instinctive behaviour is compensated for by a different mechanism: socialisation, mainly in families.  Families share a great deal, including a more or less common environment, language, cultural practice, leisure activities and diet.  Estimates for the heritability of obesity vary between 40% and 70%.  That does not mean obesity is genetically caused, only that it runs in families.  We cannot be certain for any individual whether their obesity is generated by a genetic blueprint, but there is a clue: obesity has been rising rapidly.   As the gene pool changes only very slowly over time, we can take it that the change is social.

Third, there is the reliance on twin studies.  For more than 50 years, twin studies have been an unfailing source of bad science.  The central assumption behind twin studies is that twins who are identical (monozygotic, or MZ) will manifest the same behaviours on that account; twins who are not identical will share 50% of genes, making them more like each other than ordinary siblings would be.  There are several problems with this.

  • Any similarities within families may well reflect similar environmental factors. That point is acknowledged by Harden.  Identical twins generally have social environments which are very similar indeed, and certainly more similar than fraternal twins. That’s why past studies tried to concentrate on identical twins reared apart – the problem being that (a) not enough twins are reared apart to make for a valid study, and (b) that even when twins are reared apart, social services agencies try to match their environments to the greatest possible extent.
  • Twins are not representative of general experience.  All twins have a different experience from other babies, and an experience which is similar to each other. They are typically born prematurely; they have to share the divided attention of parents, in a  different way to siblings; and because they have been born at the same time their environment and experience will be more alike than other siblings.
  • There is the common assumption of genetic similarity.  In most studies that is based not on hard genetic evidence but (believe it or not) on the impressions of the parent.  It should be no surprise that parents who think their children are more alike treat them as more alike.
  • Nearly all studies discard information about twins where one is disabled – a not uncommon issue – even though that disability means that children with the same genes clearly have different experiences.

What, we might reasonably ask, can twin studies prove?  The standard scientific approach is not to prove a hypothesis; it is to disprove it.  Identical twins cannot show us that something is genetically caused, because of confounding factors that cannot be controlled for.  What identical twins might be able to show us are the circumstances which are not genetic in origin, because if MZ  twins were to act differently we would know that the difference between them could not be attributed to their genes. There is  some presumptive evidence, for what it’s worth, that MZ twins can and do have different sexualities – the same in two thirds of cases, different in one-third.  If that happens at all, it isn’t genetically determined – though, being of a sceptical bent, I do wonder about the sampling and the lack of specific genetics which lie behind that finding.  I don’t expect behavioural geneticists to do the work to test this properly, because of course they are already convinced that everything is driven by genes.  Unfortunately, that presumption undermines the studies they make.

Fourth, there is the use of big data.  If we were serious about identifying genetic effects, we should be able to identify behaviours which exist only when a gene or set of genes is present, and which do not exist when those genes are not present.  We can do this with current genetic medicine – the same approach which last year saved my life; I know exactly which set of genes has malfunctioned, what it has done and what the best treatment is.  The GWAS research referred to might, in principle, be able to show something of the kind about behaviour – but the signs are not good.  Take the major study of genes and educational attainment cited above.  It processed data for 1.1 million adults and identified 1271 relevant gene clusters, that is ‘genome-wide significant SNPs’ .  A previous study, done on 294,000 adults, had found that they were able to explain only 3.2% of the variance.  In this study, the authors report that “A joint (multi-phenotype) analysis of educational attainment and three related cognitive phenotypes generates polygenic scores that explain 11–13% of the variance in educational attainment and 7–10% of the variance in cognitive performance.”

Taking that result at face value, what does it tell us? The most striking finding, which I’ve already pointed to, is that genetic analysis does not explain at least 87% of the variance, and in the worst case it did not explain 96%.  Genes may have an influence, along with lots of other things, but – if we trust the figures – it’s not a big one.

Now, let’s be a bit rougher on this research.  The first objection is straightforward:  association is not causation.  Even if the association was higher, it wouldn’t actually prove a causal link.  There has to be a specific generative mechanism, and that’s never been established.

Second, the stats weren’t developed to deal with numbers this big.  People often suppose that associations in bigger data sets are more reliable than associations in smaller ones. That’s not necessarily true; the larger the number, the more systemic imbalances can be amplified.

Third, this is a fishing expedition.  Whenever you deal with massive numbers of observations, there are going to be associations arising by chance.  The bigger the numbers, the more apparently significant associations there are going to be.  The claims in this study might, I think, be compared to the work on astrology, seeking to prove that people born under particular star-signs move into certain occupations.  Austin et al report, in the Journal of Clinical Epidemiology, no less (2006 59 pp 964-969) that people born under Gemini and Libra had increased mortality after infarcts treated by aspirin.  Make the sample big enough, and you’ll find some pattern.  Just don’t try to invest it with meaning.

Last, and not least, these associations might simply mask the real influences.   There are lots of other reasons why people might have higher or lower educational attainment – class, poverty, family background, language – and a comparison of educational attainment with selected elements of the genome doesn’t bother controlling for them.

No jab, no job: a case for compulsory vaccination

I have been puzzled by the insistence of politicians and journalists that no-one should feel compelled to be vaccinated.

The place to start, perhaps, might be John Stuart Mill’s classic, On Liberty.

The object of this Essay is to assert one very simple principle … That the only purpose for which power can rightfully be exercised over any member of a civilised community, against his will, is to prevent harm to others. His own good, either physical or moral, is not a sufficient warrant. … The only part of the conduct of any one, for which he is amenable to society, is that which concerns others. In the part which merely concerns himself, his independence is, of right, absolute.

The people who are arguing against compulsory vaccinations have focused on the sentence in the middle: that we should not do things to people just because it is good for them.  Fair enough – but that is not what is being proposed.  The principle behind the slogan, ‘no jab, no job’ is that people have a duty to ensure that they do what they can not to infect others.  That principles protects us, but it also protects other people.

Now, I am not personally a liberal, or anything like as liberal as Mill; I do think that there are clearly defined circumstances where we do exercise power over individuals for their own benefit, and we are right to do so.  One example is compulsory education; another is compulsory sanitation.  There are reservations to make: we do this to enhance people’s independence and autonomy, not to undermine them.  When it comes to subjecting other people to avoidable harm, however, the same reservations do not arise.  People are not entitled deliberately or recklessly to endanger the lives of others, and that’s what the current dispute is about.

There is one part of the case that is uncertain.  It has not yet been shown for certain that vaccines reduce transmission, and transmission, not infection, is crucial to the welfare of others.  The main risk of transmission is probably while the disease is  asymptomatic, so that people carrying the disease do not know that they are infectious.  The current advice from the JCVI, the government’s expert committee, is this:

There is emerging evidence that vaccination may prevent asymptomatic infection, which may be inferred as evidence of an impact on transmission. However, while these data are very encouraging, they are still limited and currently there is no strong real-world evidence of an impact of vaccination on transmission.

I’m going to treat the argument as having two stages.  First, let’s take it that the effect of vaccines on transmission is possible, or even likely, but unproven.  As soon as that is admitted, it raises a critically important question for any employer: is it legitimate for them to expose either their clients, or their workers, to the entirely unnecessary risk of breathing the same air as someone who refuses to be vaccinated?  I think the answer to that has to be ‘no’, and it is unsurprising to read that Care UK  has elected to tell its employees that if they do not get vaccinated, they will be treated as not reporting for work.  What is surprising is that any responsible employer or service provider would think that they might be able to take a different position.  If the obvious happens, and one of the people they serve dies, they are inviting legal action, and saying ‘we weren’t completely sure that the vaccines would actually work’ is a pretty feeble defence.

Second, let’s ask what happens if the link is proved, and it becomes evident that vaccines suppress transmission.  At that point, it becomes clear that the effect of not being vaccinated is to expose other people to serious risk of infection, disability and death; and at that point, the argument for compulsion becomes unanswerable.

In memoriam, Robert Pinker

I have only just seen, belatedly, an obituary for Robert Pinker in the Telegraph (5th February).  Bob was the supervisor for my PhD thesis, on stigma, which he had written about in Social theory and social policy (1971).  Highlights of the supervision sessions included him accusing me of ‘unregenerative antinomialism’ and ‘intellectual joyriding’.  When it came to the viva, there was a crisis to resolve.  There was a bus and train strike, no public transport in London, and Bob had done his back in and couldn’t walk.  I borrowed my sister’s car and picked up Noel Timms, the external examiner, and we travelled together to Bob’s house.  We had the viva by his bedside, with Bob in blue pyjamas.   (I was sent out while they made a decision, which took some time.  I suspect, but don’t know, that Bob talked Noel round into letting me have the PhD without resubmission.)

Intellectually, Bob probably made the greatest splash in his defence of traditional social work for the Barclay report, but there was much more to his writing.  Talent, Schopenhauer once wrote,  is about being able to hit a target that no-one else can hit; but genius is hitting a target that no-one else can see.  In The idea of welfare, he worked through the implications of a series of relationships for welfare, finishing with the relationships between states.  The idea of global and international social policy had hardly registered at the time; Bob was too far ahead of the game to be fully appreciated.

I also fondly remember Bob performing a music-hall number, with his thumbs in his braces, at an impromptu singalong at a Social Policy conference.  He confessed that he’d thought about a career in music hall, but had opted to become a probation officer instead.

 

 

Social care: a tale of two countries

You wait for ages for a review of social care, and two of them come at once.  One is in Matt Hancock’s rather strangely timed proposals for reform of the NHS; the other is the Feeley report for the Scottish government, proposing a National Care Service for Scotland.

The English report has the catchy title, Integration and Innovation: working together to improve health and social care for all – I wonder if  they hired a consultant to come up with that one?  It’s a proposal for legislation on a range of topics, but lots of topics are listed as the subjects of a forthcoming bill, and the topics that are listed are difficult to match to any text that lays out the rationale.   In relation to the integration of health and social care, the main proposal seems to be that there will be a law telling people they will have to collaborate more eagerly. We all know, it seems, that the real problem is that we need a supervisory body to bang heads together.  And that, as far as I can tell, is about it.  Not a word about finance, or budgets, or professional barriers, or liaison, or … much at all, actually.  I can’t help feeling that I’m missing something, but I can’t tell what.

The Feeley report, by contrast, is rather good.  For one thing, it starts by asking people, both service users and professionals, what the issues are it needs to address. It points, for example, to the current arrangements for getting specific services to people: “It’s the equivalent of NHS staff having to make a case for funding every time someone needs a blood test.”  The panels knows that care workers are woefully underpaid.  It recognises, as the Hancock report doesn’t, that there has to be money.  The report argues:

There is a gap, sometimes a chasm, between the intent of that ground-breaking legislation and the lived experience of people who need support. In the improvement world, there is a maxim which reads something like “every system is perfectly designed to get the results it gets”. … We have inherited a system that gets unwarranted local variation, crisis intervention, a focus on inputs, a reliance on the market, and an undervalued workforce. If we want a different set of results, we need a different system.  … We need a transformation of the way in which we plan, commission and procure social care support.

I don’t agree with everything in the report, but that’s what happens if people who know what they’re talking about make their case with a rationale  and evidence.