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

Mr Friedman: My Lady, as you know, we act for four disabled people’s organisations across the UK. They are Disability Rights UK, Inclusion Scotland, Disability Wales and Disability Action Northern Ireland.

Disabled people’s organisations, or DPO, are organisations that are run by and for disabled people. They are to be distinguished from charities that represent disabled people, however well, rather than enabling them to represent themselves.

The DPO thank you in recognising them as core participants in this module. It is a module of great importance to them and the people they work with. That is because when government, bureaucracy and science responded during the pandemic, the care sector is where the most immediate humanitarian consequences of that response came to bear, where disabled people suffered the most disproportionate fatalities and other harms, and where the likelihood that such would be the case was considerably foretold by the state of the sector when the pandemic began.

That being the case, my Lady knows the DPO have a single starting point for all your modules. It was the system that was vulnerable, not people. Forgive me repeating an observation in the presence of new teams, but overlooking this as a starting point enables individualising the problem, overestimating that something will happen without intervention or, worse, accepting that nothing can be done.

On that basis, can we express gratitude for work already done by the Inquiry team but also the submissions of core participants for today. They all describe a system profoundly lacking in resilience. It is wrong to interpret the source of that vulnerability as lying with disabled people or the frontline workforce. To adopt the analogy used by Mr Jacobs on behalf of the Welsh TUC last week, that is to look through the wrong end of the telescope.

On the way forward for this part of this Inquiry, can we therefore make five short points.

The first, this module, like health and vaccines, is going to involve a whole-system investigation. It will combine in one module the evidence of politicians, technicians, service providers, managers, workers and those individuals, families and communities who were both in need of care and assistance and provided it unpaid.

When the Inquiry thinks about experts and other witnesses, as well as reading already available reports and studies, it will be important to seek a descriptive map of the whole system. That includes describing the sector’s fragmentation, complexity and fragility, and high turnover of staff who were themselves in vulnerable states of employment and protection.

Our sense is that when you do that, especially through the lens of the four nations and not just England, you will do something that has never been done before, and in the process enable the different parts of the system to learn many things that it does not yet properly know about itself.

My Lady, given that, the DPO support the important submissions of the National Care Forum, Homecare Association and Care England that if your definition of “care provided in the home” does not include the various supported and independent ways that disabled people live at home and receive care, then you deny yourself a sizeable part of the map.

By design, the experience particularly of younger disabled people and those with learning disabilities will be left out. That would be wrong in itself. It would also leave out the lessons to be learned about smarter and more targeted NPIs, including how disabled people with state assistance could set up supported living networks in the pandemics and emergencies to come.

Of course, the level of detail in which these matters are gone into will be a matter for time management. We have already seen you do that in the curation of the live witnesses in previous modules, combined with the written statements and exhibits. With that approach, and the careful choice of case studies and what we’ve now heard the bereaved families refer to as spotlighting, a lot of ground can be proportionately covered. Alongside other core participants, we simply do not want you to cut out completely a central category of the care sector which would have the consequence of distorting the population profile of the whole module. That does not mean the Inquiry has to deep dive into every home setting in the same way.

Our second point concerns context. As your counsel team apprehend, we do say that, without repeating itself, the Inquiry needs to consider the pre-pandemic situation of the sector in order to understand why the system buckled once the crisis began. We agree with, amongst others, the Covid Bereaved Families for Justice UK and the Northern Ireland bereaved families that part of that consideration should include a renewed and targeted focus on how structural inequality and discrimination specifically impacted this care sector part of state and society. I hope my Lady already appreciates that the effort is critical to scene setting and identifying where the vulnerabilities of the system lay and indeed how those vulnerabilities should have been foreseen.

How that can be done proportionately includes, as my Lady has been doing, disclosing into this module the various expert reports and other publications that have been adduced in previous modules. On this, CPs could make suggestions as to what should go into a core file of materials. Equally, there is benefit in asking experts on the care sector to consider the implications on(?) budgeting and reforms in the immediate pre-pandemic period.

My Lady has already heard from DPO witnesses that it produced a state of emergency for them before the pandemic began. Finally, as suggested by others, those who provided reports on structural inequality at the beginning of Module 2 should be asked to provide either a group or individual updates, applying their minds specifically to the care sector.

Our third point is the statutory easements. As the Cymru group has just outlined, these were provisions contained in the Coronavirus Act to allow local authorities to suspend their care services and assessments when staffing and other activities required.

For England and Wales, these were contained in schedule 12 of the Act and for Scotland they were contained in sections 16 and 17. These provisions have not been mentioned yet in the CP submissions other than by the National Care Forum, and we just heard them mentioned now, and we respectfully think they are important in this module, given the other points the DPO are already making.

In three nations, the very first thing the Covid emergency state did in law to protect the so-called vulnerable was to ease its duties in relation to them. The fact that it was the very first thing is an important indication of how vulnerable the state knew the system was. Easement rendered people in need of care more vulnerable, but nevertheless was something done, what lawyers call, in accordance with law. In lay persons’ terms, it legalised it and licensed it.

The fact, as we understand it, no local authority in Wales notified its use of the easement and only a few local authorities in England said they might is not good news, especially when DPO and others report such a massive decline of services and there was no independent auditing then or now to establish what truly went on.

My Lady, this is a question that should be inserted into relevant Rule 9 requests.

Our fourth point is human rights, and especially the human rights of disabled people. I can take this very shortly.

Firstly, the four nations are absolutely not in the same boat about what they say they want to do about rights. However, their delivery on such aspirations as they do have will be sorely compromised if we do not have a United Kingdom approach to the issue.

Secondly, a major cause of the flaws in the system you will study in Module 6 derived from non-compliance with the human rights of disabled people, in terms of planning, consultation and data collection.

Our final point concerns recommendations. Your counsel’s note for today reminds us of one of my Lady’s core values, which is the imperative to make recommendations as the Inquiry goes along.

It follows that CPs have to learn to participate that way too, to make our suggestions as we go along, which is obviously only for intermittent parts of the Inquiry’s journey. We suggest for this module that my Lady more specifically asks the witnesses in the Rule 9 questionnaires: what would you particularly recommend for future pandemic preparation, and why? And that witnesses come to the Inquiry prepared to discuss.

That may be happening generally, but the Inquiry is now entering the sharp end of the system, and it’s all very well to want to make meaningful and effective recommendations, but the Inquiry and all its CPs will need help.

The DPO say now that part of the change required is for the views and agency of disabled people to become far more valued in their own right, but also for disabled people to stop being analysed as passive recipients of care or mere dependents.

They want the Inquiry to examine and consider recommendations that would enable the care system to empower disabled people as individuals and groups within that system. They also want the system to become more resilient in terms of including them in the co-production and co-design of its future. They therefore thank the Inquiry again for making this module and their involvement in it with others one of the places to start that task.

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

I think we have a slight change of order, I think Dr Townson, are you going next?