4. Submissions on Behalf of Disability Wales and Disability Rights UK by Mr Friedman KC

Mr Friedman: We act for Disability Wales and Disability Rights UK. They are national disabled people’s organisations, DPO, led by and for disabled people.

They thank my Lady and your team for creating this stage of the Inquiry in Wales, as they thank the teams who have done the same in England, Scotland and are preparing Northern Ireland. As in Scotland, now in Wales, this Inquiry is concerned with both a crisis of devolution and a crisis for disabled people. Nothing indicates those two things more profoundly than the figures for Wales that emerged in the summer of 2020: 68% of the people who had died of Covid were disabled people, a terrible ratio of seven out of ten deceased in Wales compared to the still shocking six out of ten across the UK as a whole.

Learning disabled people, when age is taken out of the equation, were at least three times more likely to die of Covid in Wales than non-disabled people, but that number, said the statisticians, could be as much as eight times.

When age is placed back into the equations, these figures reflect the UK’s debt to the elder Welsh people, many of whom suffer from respiratory disease because of coal mining and were part of the 20th century’s industrial workforce. Once Covid began, awareness of that health legacy did not escape either the Chief Medical Officer of Wales or the Technical Advisory Group.

The statements of the Welsh ministers, as well as their professional backgrounds, show a culture of government in Wales that is very different in tone and working practices to the environment that my Lady looked at in Westminster.

From the First Minister, who trained as a social worker and is a professor of social science, through to the group of civil servants who assisted the politicians, this is not a governing class that was divorced from the humanities of everyday life, and yet the vaunted social democracy of Wales and the humanist aspirations it has for the role that the state can play in people’s lives could not prevent both mass death and real suffering. Why was that so? And what does that tell us about the government of Wales and the Union alike?

Starting with the place of disabled people in the overall system of Welsh Government, first, that system has evolved in a piecemeal and incomplete fashion. That was particularly apparent in emergency planning. The Welsh Government had only taken on Civil Contingencies Act responsibilities in 2018. It had no better pandemic plan than its UK counterpart, but never acknowledged as much. What was said in Scotland can be said again here: if Wales knew that it had an older, poorer population, why did it not make itself more ready to protect them? And if it declared its commitment to comply with the United Nations convention on the rights of disabled people, why did it overlook international law obligations contained in the convention concerning planning, data collection and engagement with disabled people for the purposes of pandemic preparedness?

Second, this was a very bad moment for the four nations to unite in jointly governing a pandemic of this unprecedented nature. Wales, especially its population of disabled people, was seriously compromised in its resilience as a result of austerity. Going into 2020, Brexit had soured relations and monopolised resources. The different geography of UK inequalities was pronounced. The gulf in politics and economics that was blamed for those inequalities was deep. The power imbalance between the devolved administrations and the UK state was significant.

Third, Welsh Government may have political commitment to developing equality and human rights, but it is not straightforward to create those things when so much of Welsh public law and economics remain part of the law and economics of England. That is the case even though the Senedd now has lawmaking powers.

In Scotland, my Lady had Professor Cairney saying: who doesn’t like human rights? But emphasising that the critical question is: how are they being enforced? In Wales, my Lady has the previous Lord Chief Justice of England and Wales, Lord Thomas, questioning the benefit of aspirational Wales legislation such as the Social Services and Well-being (Wales) Act and the Well-being of Future Generations (Wales) Act.

These laws use the language of rights without it being sufficiently precise to make any rights described justiciable. Indeed, Professor David Feldman goes so far as to call this legislation which bears no law.

Finally, on system, there are features of intergovernmental relations that pulled in disastrously different directions. They range from extraordinary oversights like not inviting Welsh representatives to the first five SAGE meetings, to truly fatal disputes about the timing of furlough funding in mid-October 2020.

All core participants will want the Inquiry to look at the rights and wrongs of these matters, but the stance of disabled people’s organisations is that humanity is sovereign over state.

It is morally imperative to involve intergovernmental relations within the United Kingdom that assure best endeavours to protect people from being killed or harmed irrespective of where or who they are.

Like all four nations, when Wales had to start its Covid planning from scratch, it made mistakes. It thought food packages for those shielding would be distributed by the UK Government, only to have to catch up with England when that assumption proved to be wrong. While its experts knew that care homes would be the greatest places of risk, Welsh Government introduced testing later than other nations, although all of them were too late.

What Welsh Government did well, and in many ways better than in other nations, was to partner with its people. For disabled people, civil servants reached out to DPOs in mid-March to find out what the government needed to learn. Regular meetings between Jane Hutt, the Deputy First Minister and Chief Whip, and DPOs started in early April 2020. Existing structures such as the Disability Equality Forum were used more frequently and dynamically also from April 2020 onwards, and new structures on inclusive communication and Covid morals and ethics were created based on liaison with DPO.

This is fundamentally different from what the UK Government did, and it contrasts with the extent to which Scottish Government disengaged from civil society groups in the first weeks of the crisis. It was Welsh Government that uniquely in the UK commissioned a DPO-led study of the effects of the pandemic response on disabled people, which became the Locked Out report. And on the recommendations of the report it was Welsh Government that set up a disability taskforce, again unprecedented in the UK.

The outcome of this premium placed by government on social partnering is what the Welsh Government overlooked in crisis planning it was able to somewhat remedy in scaling up its existing relationships, but the DPO join the other parties in submissions today to observe that relying too heavily on good relations was not enough.

Like the Scottish machinery of government, the Welsh system does not have departments, it is organised into multidisciplinary groups which in turn each form the several more focused directorates. The turnover or churn of ministers is seemingly not as problematic as in the rest of the UK. Most ministers serve for the duration of the Senedd. Vaughan Gething worked on the health portfolio for six years. Rebecca Evans had led local government and finance since 2018. The size of the government was such that all decisions could be taken through the Cabinet. Jane Hutt, as lead minister on equality issues, was present on the daily calls and was part of the Covid core group, but there was never a dedicated minister for disabled people, which may explain partly why Wales was not prepared prior to the pandemic. Further, without a dedicated minister, what worked was left too much to chance, based on the accident of Jane Hutt, who was committed to make things happen, which might equally have led to different outcomes if certain core personalities like her were not in place.

There was also a lack of proper auditing by the centre of government on what services were being delivered and withdrawn on the ground via local government. Again, this was outcomes based on relationships and personality and, we say, not necessarily enough on process.

The Welsh ministers make their case for small state machinery and long-standing collaborative cultures. The question on the one hand posed by Professor Wincott is: was that machinery compromised by cosiness? But the broader question for Wales and the UK is: does government by social partnership scale up in crisis? The DPO want the Inquiry to consider how it can, and why it must.

Turning to expertise, like Scotland, Wales set up its own scientific advice mechanism to ensure local focus on local data. The accusations against SAGE, without criticism of its integrity, is that it was too Anglo-centric in terms of its people, its knowledge and actual product. Like SAGE advice, the Welsh Technical Advisory Group could not escape the constraints of UK Treasury funding, and on this all the scientists were unsuccessful in persuading the UK Government in September and October 2020 to act more forcefully and earlier to stop the second wave.

In terms of recognising the discrete experience and rights of disabled people, Wales was arguably more advanced than the rest of the UK. Since 2002 it has sought to govern in accordance with the social model that holds disability to be a societal construct rather than inherent to the challenges of individual medical condition or impairment. The complaint of disabled people in Wales is that during Covid-19 the so-called “medical model” made a considerable comeback. The reversion can be seen in the linkage of vital services to being on the shielding list, defined as a list of medical conditions. It was Welsh Government that initially acquiesced in the passing of Part 2 of Schedule 12 of the Coronavirus Act, which suspended statutory duties relevant to protecting disabled people at a point when those duties actually needed enhancing. We passed an Act, as Jane Hutt, lamented, which singles out disabled people’s most basic rights as something that can be switched off when expedient to do so.

Although not the act of government, it was under Welsh Government’s watch that the use of Do Not Resuscitate notices proliferated in an unaccountable fashion. The issue was given UK-wide prominence by letters issued by a GP surgery in Maesteg, which suggested to elderly, frail and disabled people that it was better to use resources on the young and fit, who were said to “have a greater chance of survival”.

While Welsh Government quickly committed itself to engagement and partnership with disabled people, to a considerably greater extent than the rest of the UK, there are still lessons to learn on how best to do that. Mark Drakeford tells you in his statement that the relationship between the state and the citizen in Wales should be one of co-production and that expertise never lies solely on the part of the provider. But in order to get beyond aspiration, co-production and co-design need to be treated as a discipline, skill and law.

However more developed that endeavour is in Wales, its practice failed to consistently and timeously feed back on whether recommendations from partners were adopted. Input was still missed at the point of policy formation and planning. Consultation was too often sought about decisions already made. Grassroots DPOs and other third sector also lacked financial capacity to participate.

The lesson of all these modules is also that co-production and co-design cannot work without capacity and infrastructure, and on this data is critical. Wales, like the rest of the UK, made decisions under too much uncertainty, not just about the virus, but about who was where, in what circumstances, when decisions were made.

In Wales, there were startling gaps. No modelling was done for Welsh care homes because the data was not available. The Care Inspectorate for Wales confesses in its statement to the Inquiry that it cannot guarantee that all deaths in care homes were notified to them. Felicity Bennee, an important witness, who co-chaired TAG and TAC, described data sharing in Wales as patchwork that had not finished being sown together.

There was a shortage of data analysts, a sense, real or otherwise, that data was not being properly shared from England and a view, at least held by Bennee, that Wales had not yet worked out how to work as collaboratively with the subjects of data as it should.

If my Lady then considers protection of disabled people in Wales during the pandemic, despite awareness of the risks the issues already seen elsewhere in the UK, including lack of access to food and essential resources, collapse of health care and independent living services and the suspension of disabled people’s rights, all happened here.

That lack of protection in what is otherwise a progressive state committed to the social model creates puzzles for this Inquiry, including for those advocating for a change of values as important in its own right. To be considered in this module are therefore the following:

First, as with issues of race and gender, Wales has not reached a default position of inclusivity. The Locked Out report concluded that the root cause of this is “simple thoughtlessness” about the position of disabled people.

Second, dynamic and effective engagement with DPO remains essential to correct attitudinal barriers as much as physical barriers that prevail in state and society.

Third, missed opportunities to properly use data creates its own dangers at least as much as misuse of data. It has taken Covid-19 to really bring that to light.

And fourth, as was pressed upon my Lady in Scotland, human rights are not enough if they do not contain socioeconomic rights.

On that point of redistribution, the DPO have now made the case several times that UK Covid economics was not radical economics but limited intervention to maintain some aspect of ordinary wage earning with considerable support of businesses. That was valid, but it was never going to protect disabled people and their low paid or unpaid carers.

From the Welsh Government perspective, the UK Covid economics also put profit and expedience over care when it resisted for those few crucial weeks the scientific advice from both SAGE and the TAG to introduce an autumn 2020 firebreak. In Wales, for Felicity Bennee, who knew the numbers, it was, in her words, overwhelmingly painful that the UK was insufficiently flexible to enable a one-month Welsh firebreak only to go into its own a few days later. Whether this was a Treasury for England rather than a Treasury for the UK, as the First Minister alleges, will be for my Lady to decide, but the hierarchy of power in this relationship is unmistakable, and the tragedy of the delay is not disputed.

My Lady, at the beginning of the address we said the DPO were thankful for the work that you and the Inquiry teams in the four nations were doing, but we did not say why. There are two reasons in particular, being gratitude.

First, what the evidence is showing, as the Inquiry moves across the United Kingdom, is that in many ways this country of nations has stopped knowing about itself culturally, economically and politically. The possibilities and challenges of what is happening in each of the four nations are largely not comprehended by governors, academics, lawyers and businesses, let alone the wider public. It is this Inquiry, occasioned and focused as it is on the Covid state of emergency, that’s putting together for the first time a proper account of what the devolved United Kingdom is and how it is run.

Second, in the UK’s lost comprehension of itself, disabled people across the four nations have suffered because inequalities have been allowed to grow, aggravated by unequal geographies of income, infrastructure, and co-morbidities. Covid was not the great leveler of inequality and division, it was the great revealer of those things. Disabled people constitute the lived and deceased evidence of that reality. It is this Inquiry that can help people across the UK to understand why different parts of society have been chosen to suffer profoundly different human experience.

Thank you, my Lady.

Lady Hallett: Thank you very much indeed, Mr Friedman.

Mr Gardner, can we fit you in before we take a break?

Mr Gardner: I planned 20 minutes, my Lady.

Lady Hallett: Okay.