2. Submissions on Behalf of Disabled People’s Organisations by Mr Friedman KC

Mr Friedman: In this module we act for two disabled people’s organisations or DPO, they are Disability Wales and Disability Rights UK.

All the governments you have studied purported to champion their categories of vulnerable people and to act on their behalf. The Inquiry will evaluate the success of various endeavours, but for disabled people there is a real basis to fear that in Wales this is as good as it gets, and it was not good enough.

The Welsh Government system of civil contingency was not resilient. In spite of its humanist values and collaborative practices, government could not deliver quickly and widely enough to its population. We want to address you on some of the reasons why that was so, but we also want to ask, because it is a question that we think my Lady must ask, what is it that would render emergency systems in Wales and the UK more resilient in the future?

Starting with why Wales was not resilient.

This module shows that the small state quality of Welsh Government, presiding over some 3 million people and with embedded close relations, has both possibilities and challenges. Certainly social partnership meant something in Wales when different groups came together to assist government response as well as they could. You see this collaboration during the pandemic when the Social Partnership Council expanded beyond its traditional membership of unions and commerce to include various statutory commissioners and the council for voluntary action, although not the DPO.

Helena Herklots, as the Commissioner for Older People, was able to tilt the minister to introduce more concrete planning for the needs of older people when the minister’s original inclination was not to do so.

Likewise, it was in Wales and not England or Scotland that close and dynamic collaborative meetings took place between DPO and government. Those meetings with Deputy Minister Hutt started in early April 2020. The UK Government did not even table a discussion on the pandemic’s impact on disabled people with ministers until 21 May, and did not start meetings with DPO until July, before they promptly finished them.

However, the problem for Wales during the pandemic is that it was too small, both in terms of the power it held and its capacity to do things differently. It was too small not to be taken for granted by Westminster. In Welsh unionism, the UK Government did not face the nationalist challenge of the Scottish Government or the perennial special measures necessitated for the Northern Irish one. The result was Wales being informed about decisions rather than being consulted upon them on numerous occasions. It was not invited to SAGE for its first five meetings. It learned, barely days before enactment, that devolved public health law and not reserved aspects of UK civil contingency law would govern lockdowns.

Wales could have gone for a sooner and longer October firebreak, but it stumbled in political and economic headwinds which made it cautious about acting, and especially so when it felt unsupported by the UK Government. Wales was also too small to escape being parochial and limited in what it could do locally to really change its outcomes. There was not a world-class epidemiologist like Mark Woolhouse to email the Chief Medical Officer early on and focus minds. Sir Frank Atherton and Dr Orford did not have the difficult ministerial client that Professors Whitty and Vallance had, but it seems that they did not make clear the gravity of Covid-19 as early and as rigorously as they should have done.

For all the real value that can be placed on the close relationships that facilitate small government in Wales, they did not always lead to joined-up planning. The leadership of Public Health Wales was constantly in conversations with the CMO in January and February 2020, knowing how much Wales was going to be exposed in terms of its population profile, but these conversations did not translate into consequential advice to the Welsh Government about the level of the threat. On 24 January, 3 March and, even to his astonishment, 11 March, Quentin Sandifer failed in his attempt to turn a crisis framed as a health issue into a multi-agency, full-society response that it had to become.

The data gaps in Wales were poor to the point where it is hard to trust that its tragic numbers were not in fact worse. Wales did not routinely collect data on protected characteristics with regard to hospitalisation and ICU treatment. It did not register all Covid deaths in its care homes from the outset. In line with the UK, it still does not systematically gather health data on individual impairment and did not gather information to reflect the social model of disability to ascertain what disabled people might need, even though Wales has led the UK on the importance of the social model for over 20 years.

Like the rest of the UK, the Welsh Government’s lack of situational awareness of its care sector was fatal. However, unlike the rest of the UK, Wales in 2015 incorporated a requirement to have due regard to the United Nations convention on the rights of disabled people into the code of conduct under the Social Services and Well-being (Wales) Act.

My Lady can return to this in Module 6 but it is not clear at all how Welsh government or the social services of Wales interpreted that convention, especially with regard to data collection and emergency planning.

My Lady, these queries of Wales raise serious questions for devolution, because, regardless of what one calls it, we live in a United Kingdom with a lower case federalist division of powers and responsibilities. It would neither be possible or sensible for public health choices to be made by state apparatus not steeped in and accountable to the local population. And yet the people on the margins of each part of this system were rendered vulnerable by its flaws, and in that we include disabled people.

The DPO therefore ask: what would make the system more resilient in a future pandemic or similar whole-society crisis? That is your ultimate question. The DPO use Welsh Government as the case study. They use disabled people as the litmus test, as that is their concern, but also because vulnerability and impairment are part of the universal life cycle, although the disproportionate impact of that vulnerability is socially determined.

A state that is truly responsive to that reality needs this Inquiry to help it find the co-ordinates of change.

First, the case of the DPO during these government modules is that the system was vulnerable, not people. The opposite of vulnerability is resilience. Resilience is not a natural phenomenon. Some organisations, families or individuals might be more robust than others but resilience is about assets, and it is the state that plays a key role in generating, protecting and facilitating those assets. This is truly the starting point. Overlooking this enables individualising the problem, overestimating that something will happen without intervention or, worse, accepting that nothing can be done.

Second, while it is tempting to think that things could be done better if there were only better people in place – and Minister Jane Hutt was valued by DPO in this regard, and others have been criticised – a system that overly relies on personality lacks resilience, because it is too dependent on singular points of failure or singular points of success.

In a whole-system crisis there clearly needs to be a better way than hoping our leaders make the right judgement calls. The necessary surge of services must happen because of pre-planning and practice, not chaotic improvisation. Different levels of political and civil society must come together despite their differences. There needs to be a more integrated system of collective resilience.

Our third point is that the beginning of that system would involve dedicated machinery with a core aim of generating resilience in UK devolved and regional governments. The machinery has to be intergovernmental, irrespective of whether UK central government takes a leading or facilitating role. It needs dedicated ministers at each level of government to mitigate the consequences of inequality. It has to be assisted by executive agencies that operate in partnership with local organisations. The matter can be reviewed after the Northern Ireland module, but it requires revamped commissions concerned with equality and human rights which, amongst other things, need more effective powers. With all that machinery, we need disabled people as leaders and managers rather than still too often managed and led.

Fourth, the effectiveness of any resilience system involves synchronisation between the centre and the locality. You cannot have situations as befell the Welsh Local Government Association, where those who will have to deliver emergency services are the last to know about them.

Likewise, the notion of whether Welsh local authorities relied on the easement of care duties under schedule 12 of the Coronavirus Act remain just that, a notion. No local authorities filled out a form to say it was withdrawing services, yet no audit has been done of the manner in which services and easements were curtailed. That is the Welsh version of the problem. My Lady knows it happened elsewhere.

The answer lies in creating a structure of national, regional and local resilience organisations, not mere meetings. They must have statutory duties, adequate funding and external auditing. There were in Wales, as in all other nations, assumptions about the readiness and capacities of local authorities, health boards and care settings which were essentially intuitive. They should have been informed by periodic inspection. DPO, but also other third sector groups, must be enrolled into all these organisations with status and funding. They can no longer be seen as some sort of amorphous voluntary populus whose views might be considered without any structured core participation.

Fifth, if government wants state organisations and their personnel to deliver on resilience against inequality, they need to provide continuous training and learning about how to do so. In terms of who is to give the training, it is crucial that it includes lived experience expertise, including from DPO and third sector, but also bereaved families and frontline workers.

Sixth, as part of treating, training and learning, government, civil servants, third sector and private sector all need to develop a far greater skill in the practice of co-production and co-design. This language of co-production is not just an idea, it is a central tenet of Welsh Government policy and has been commended by a range of state and non-state actors in other modules. It is a method, important to DPO and central to the latest developments in key international human rights law, but its relevance is broader than that.

In disaster management, the aim of co-production and co-design is not just to be kind, but to be smart. In the provision of scientific advice it ensures that advice remains grounded in social reality. In response to an emergency, as the British Red Cross would put it, it’s about making your friends before you need them.

It is also not just about talking. As Jane Hutt suggests, it concerns acknowledgement of information shared, consideration of its relevance, and feedback on what then happens. It mitigates the lack of diversity and potential biases that will occur when politicians and experts hold conversations only amongst themselves, and it creates better outcomes if decisions have been stress tested by the people who will potentially live and die by them.

My Lady should recall that the Disability Unit in the UK Cabinet Office wanted to create a national disabled people’s panel as part of its “ambitious planning” that was never taken up. There needs to be UK and devolved nation convened taskforces with DPO to coproduce emergency risk assessments and planning for disabled people and that work then needs to be channelled into general planning at various national, devolved and regional levels of state.

Seventh, human rights protection of disabled people matters in pandemics because they are the people that are disproportionately affected. If governments are committed to those rights, they need to specifically show how they comply with them in this field, admit the gaps, and create legally enforceable means to resolve disputes of contested interpretation, otherwise rights remain merely aspirational rather than practical.

Wales has codified a requirement to consider the United Nations Convention on the rights of disabled people, it has created an obligation to have due regard to the UN Convention on the Rights of the Child since 2011, but these rights are not yet embedded in real-time decision-making, especially as regards emergency planning and data in relation to disabled people.

To secure those rights before they are needed, they need to be incorporated into the law of Wales but also the law of the whole of the UK.

Further, if one is serious about equality and non-discrimination, then the form filling and absence of real-time scrutiny that have made the method of impact assessments impotent has to end. Across a range of equality and rights-based mandatory considerations, impact assessments should involve both thinking and collaboration with the third sector to make the discipline the centre of gravity of good governance and the source of real resilience.

Our eighth point concerns the gaps in data systems and analysis that are truly profound. Neither local resilience nor effective delivery to the people who need it will properly exist without a more sophisticated system of data collection and its deployment. The ONS did a good job at the top of the structure, but there needs to be a far wider network of data collection, distribution and analysis with the technology to assist it. We are supposed to be in the midst of an information revolution, but its possibilities have not reached yet the interests of marginalised people.

There also needs to be a practice of co-production and co-design of services by DPO and other representative groups to enable national data projects to happen in a way that can be trusted not only by government but also by those who are governed.

Our ninth point concerns people. Harnessing the positive qualities of people and groups requires proper integration between state and society. This is not merely a communication exercise; it’s about structure and action. There needs to be organised, practised, data-informed, inclusive and valued connection between the centres of power and the critical parts of the human geography that whole-society crisis response must be able to reach and collaborate across. That includes independent experts and agencies, those who deliver on the ground, whether it’s local government, other Category 1 responders, the third or the private sector, but also the people, families, streets and communities that make up everyday ordinary life, the very essence of what government is there to protect.

That leads to our final point, which is the moral economics of all of this. My Lady has heard our submissions that human rights will not be enough in a pandemic without social and economic rights. You will come to your own view of whether or how much to express that in accordance with your terms of reference. In concrete terms, the DPO want equality and human rights impact assessments to be applied to budgeting, including the duties to consider socioeconomic disadvantage under section 1 of the Equality Act, and they want all governments to practice co-production and co-design of economics with all its people and not just more powerful interests.

My Lady, economics can, of course, be the subject of political differences, but the recommendations we and others are putting to you are actually about coalition and society recognising its greater interconnectedness, its sense of shared ethics and the price that was paid for not putting value on things that should have been more valued.

On any view, the changes now needed to avoid pandemic inequalities must involve considerable and progressive effort to make democracy more social again, and more socially connected than it has been for some time now.

Rhodri Morgan, one of the architects of the modern government of Wales, said that devolution would create a living laboratory in which different policy ideas could be explored. The Covid pandemic caused some of the great and tragic living experiments of our time. It is this Inquiry that must gather the learning up and make its recommendations.

Lady Hallett: Thank you very much, Mr Friedman.

Ms Heaven.