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

Mr Friedman: Good afternoon. We act for two disabled people’s organisations, or DPO, they are Inclusion Scotland and Disability Rights UK, and we are grateful to be addressing you in Scotland as part of an Inquiry that is looking at all four governments in a way that no UK Inquiry has done before.

My Lady, the Scottish Government is a government that seeks to adhere to the social model of disability, that disabled people are disabled by the barriers they face in society rather than the impairments they overcome, and in that sense their inequalities are chosen.

It is a government that also wants to be judged by its compliance with human rights law, not just the civil and political rights contained in the European Convention of Human Rights but the broader obligations and social and economic rights contained in the United Nations Convention on the Rights of Persons with Disabilities, or the UNCRPD.

However, despite this, the social model and equal rights of disabled people remain a work in progress in Scotland. Across the UK, the pandemic shows that recognition of values without redistribution of assets is not enough. It is not enough to recognise the value of disabled people’s lives. There must be redistribution: redistribution of political resources in terms of the influence that disabled people can have upon the policies that affect them; and redistribution of economic resources, in the sense that if a society is serious about valuing the dignity and diversity of human life, disabled people will need more economic resources, not less.

My Lady, five points of context, please, that are important to this module.

First, the number of disabled people in Scotland may be as high as 35% of the population, compared to UK overall figures that range from 20% to 22%.

Second, health inequalities in Scotland are the highest in the UK, and some of the highest in western and Central Europe. This is, with respect, an older, more unwell and lower income population, that was more susceptible to Covid-19 harm, and especially so for some of its disabled population, given the virus’s risk to people of older age, with learning disabilities, and with certain comorbidities.

Third, disabled people were in an emergency before Covid-19 began. They were made vulnerable, and their resilience compromised, by cuts to benefits and services. You will see the truly humbling figures concerning standard of living, housing, employment gaps and pay gaps.

My Lady will also hear this week from Dr Jim Elder-Woodward. He is both a renowned exponent of independent living and one of its great experts. His evidence tells you that despite all the insight and extended network that he has, his situation before the pandemic was near to collapse, and by the end of March 2020 he had suffered a nervous and physical breakdown under the weight of the changes that were happening to him, and likewise the very significant numbers of people like him who lost services and were trapped in their homes.

Fourth, the Scottish Government has staked its reputation on its commitment to being more values-based than its Westminster counterpart. Before the pandemic, it sought to mainstream awareness of health inequalities as a cross-government concern. It registered its commitments to human rights and specifically disabled people’s rights by introducing a delivery plan to achieve better compliance with the UNCRPD. While Westminster government was often silent about or against international human rights law and any dedicated economics to end health inequalities, Scottish Government was vocal in its commitment to both.

Fifth, the pandemic took place amidst a crisis of devolution, and disabled people’s experience exemplifies this crisis. Scotland has used its finances to mitigate some features of austerity economics, for example refusing to apply the bedroom tax, and maintaining existing guarantees of the Independent Living Fund when the fund was abolished across the rest of the UK.

However, in key ways that would impact during the pandemic, Scottish Government was neither independent nor alternative, for instance in the provision of social care, which has been allowed to operate beyond proper central government control.

Overall, Scotland’s capacity for any type of unilateral governance was compromised by the constitutional funding arrangements under devolution. Scotland’s choices on the timing and scope of NPIs were starkly limited by the choices of UK Government. It did not have the funding to do otherwise.

Turning then to Covid governance. As my Lady knows from Module 2, the DPO encourage you to see how government can go wrong for disabled people generally but especially during an emergency by considering nine critical areas. The purpose of the method is to break down the various points and decision-making when disabled people can be overlooked or damaged even when a government believes itself to be doing the right thing.

The first area is system. How did disabled people feature in the overall system of Scottish Government of emergencies? Despite concern for health inequalities in Scottish politics and its stated priorities to protect disabled people’s rights, the Scottish Government, like its English UK counterpart, did not systematically assess social and economic inequalities in the context of pandemic planning at all before 2020. That included a failure to consult at all with the Scottish DPO on the subject.

Then in the first months of the pandemic, previous levels of government consultation with DPO on matters affecting disabled people, which were otherwise better than in England, dramatically diminished as regards the emergency response. Under conditions of an unplanned for crisis, a Scottish Government that aspired to be genuinely and deeply engaged with civil society, and in that respect different from its Westminster counterpart, reverted to a system of more conventional top-down elite control, not how it would like to be seen, but maybe what it needs to acknowledge.

Devolution also mattered. It meant Scotland initially followed an outdated UK plan that was based on influenza, considerably dependent on UK funding, and complicated by Brexit. All of which narrowed options for any radical independent initiative to alter the fate of disabled people and other at-risk groups.

The second area is planning. What planning was there for disabled people in Scotland going into the pandemic and thereafter? Going in, we know there was essentially nothing, and in that respect Scotland had violated an obligation under Article 11 of the UNCRPD to plan to protect disabled people in disasters, just as the UK had done. What Scotland then did was to design a decision-making strategy and publicise its approach. In late April 2020 the government published the Covid-19: framework for decision-making, which incorporated considerations of the direct and indirect harms posed by the virus to health, to society, and to the economy, the so-called “four harms” approach.

The policy emphasised that “harms caused do not impact everyone equally”, and combined to “protect those most at risk and protect human rights”.

This was a clearer, more human-centred and values-based approach than ever emerged from the UK Government with a degree of consistency or stability.

Health and broader inequalities were also an immediate focus across government civil servants responsible for equality, who from the outset were involved in key public sector planning meetings. Officials of the Equality, Inclusion and Human Rights Directorate attended the communities and public services ministerial group from its inception on 2 April 2020 and both briefed and attended the formal four harms meetings.

My Lady knows that their attendance in the UK ministerial meetings was far later and far fewer.

But how actually responsive to disabled people’s needs was the Scottish Government? It seems to have been slightly ahead of the UK in realising the needs of socially vulnerable people beyond the shielding list. It corrected its initial disengagement from the DPO when pushed to do so and continued that engagement for somewhat longer when the UK Government quickly jettisoned their own DPO Forum. The Scottish Government also enjoyed a more sustained level of support from society than its Westminster counterpart.

However, not all features of Scottish Government worked effectively, which begins with our third area: machinery of government.

How did that machinery configure in order to properly represent disabled people’s interests? In the Scottish directorate-based structure there was no Minister for Disabled People. That responsibility was part of Christina McKelvie’s portfolio, as Minister for Older People and Equalities. However, she describes herself as having “no decision-making responsibility” with regard to Covid-19. Consequently, like minister Justin Tomlinson in the UK, she did not attend the public sector ministerial group or the four harms groups, which begs the question as to who during Covid decision-making was holding the line for disabled people and ensuring that the social model of disability was upheld and the human rights of disabled people were complied with?

The fourth area concerns expertise. Did expert advice to Scottish Government sufficiently take disabled people into account? The DPO say no. Despite the creation of a Scottish scientific advisory group, decisions in Scotland remained affected by UK SAGE advice and/or the significant role played by the UK CMO and CSO.

First, it was Professor Whitty’s unplanned comments that promulgated the notion of “behavioural fatigue” that UK ministers relied on to delay the first lockdown. This concept was not supported by SAGE members of SPI-B, nor by Professor Stephen Reicher, also a member of the Scottish Covid Advisory Group. Scotland with its greater clinically at-risk population could all the less afford that margin of error.

Second, on core issues of clinical vulnerability, Scotland followed England, such that the timing of placing those with Down’s Syndrome on the CEV list was dependent on the English QCovid initiative and was delayed until November 2020. The implication of that would contribute to those with learning disabilities being three times more likely to die of Covid in Scotland and two times more likely to be hospitalised.

Third, as Scotland was dependent on UK economic packages to support NPIs, SAGE advice would trump Scottish advice, because Covid could not afford to fund significant countermeasures that were not part of UK-wide virus suppression decisions.

Finally, notwithstanding that my Lady will hear from Professor Reicher, the Covid Advisory Group remained predominantly biomedical in expertise and focused on the epidemiological harm posed by the virus. As with SAGE, and the Whitehall Disability Unit, what was lacking was a broader scope of expert to deal with health inequalities including both practitioners, DPO and other end user groups that understood the social determinants of disabled people’s vulnerability.

All of that has consequences for the fifth area in terms of what recognition was given to disabled people in pandemic decision-making. Was it recognition that realised disabled people’s discrete experience and agency in relation to the NPIs? Or were disabled people subsumed into a notion of vulnerability that conceals more about the social and economic making of vulnerability than actually addressing disabled people’s needs?

Compared to England, Scottish civil servants were more focused on the issue. There was early caution communicated to Cabinet ministers to “refine use of terminology of ‘vulnerable’ and ‘high-risk’ to avoid alienating effect”. But the critique of vulnerability is not just about being kind. It’s about government becoming sufficiently responsive to needs. It remains unclear how the four harms approach translated into solutions to problems identified or whether it simply acted as a mechanism whereby harms were identified and considered but actions went ahead in any event. The four harms group itself did not hold its first meeting until 24 October 2020. As with the general critique of expertise, it remains to be seen how informed the group was of disabled people’s perspective.

That leads to the sixth area, which is engagement. How did Scottish Covid governance engage with disabled people, and especially the DPO, as the lived experts in their own lives? The obligation under Article 4.3 of the UNCRPD is to actively involve and closely consult with disabled people, including DPO, in matters that affect them, and one of the overriding duties of the convention is to ensure effective participation.

Compared to the UK and England, Scotland does it better. However, the disengagement in the first months mattered, because that is the point in time when the lives of disabled people were dramatically turned upside-down. If one reason why there was disengagement from the DPOs at the beginning of the crisis was because Scottish Government reverted to a Westminster governing style, another reason might be that progressive governments can sometimes fall foul of the belief that because they are progressive they know best. However, to respond effectively to emergency, you must also know what you are responding to.

The seventh area is data. Was the impact of both the virus and the NPIs on disabled people properly counted and deployed by Scotland’s data architecture? Under Article 31 of the UNCRPD, it should have been, but there are significant reasons to find that it was not. Mortality rates for disabled people in Scotland were only compiled once, in March 2021. Until then, Scotland had to rely on English data. As in England, there was also a design fault in failure of health services to gather data or broader surveys to ask social questions. Instead, the tendency was to focus on individual impairment alone. Access to reliable and timely data was not available in relation to care homes, with potentially grave consequences.

The eighth area is protection. How far was Scottish Government able to protect its disabled population from the damage of both Covid and the countermeasures? The powerful criticism of Inclusion Scotland in its report Rights At Risk was that there was “an abyss between the rhetoric of national policies and what happens on the ground”.

There was the sudden withdrawal of home support, which meant loss of food, medication, basic capacity and hygiene. There was mass death in residential settings, more so in the first wave in Scotland than anywhere else in the UK. Although documentation of DNACPR is woefully limited, experiential accounts show that the issue was drastically legally lacking in accountability or control. Education for disabled children was severely compromised. When lockdown measures required those with mental illness to stay at home, they were left too much in isolation.

Finally, the increasing resort to government via the internet resulted in massive digital exclusion for disabled people and others.

The ninth area is redistribution. Was it enough to recognise the vulnerability of disabled people in Scotland without sufficient economic redistribution to support their needs? The DPO criticism of UK pandemic economics is that rather than being radical as presented and sometimes criticised, it involved the deliberate maintenance of the status quo. For disabled people furlough payments were focused on those able to work or temporarily unable to work in standard wage sectors and did not reach lower, informal or non-wage earning people. The increase in Universal Credit was small compared to sums spent on business. Limited provision of sick pay was known to be highly relevant to part-time and zero hours workers already in poverty continuing to work, with fatal consequences. Covid economics was not always Scotland’s alone to define, but its own lump funding into local authority schemes was difficult to access and not particularly accountable.

These criticisms have travelled into Scotland’s post-pandemic debates about creating a national care service. That agenda is relevant to and ahead of what is being discussed in England. It still involves fundamental questions as to whether central government will fund and manage such a service and the extent to which care sector workers shall have a living wage.

My Lady, the overall context suggests that prior to the pandemic Scotland had greater poverty and ill health challenges than England, but was more resilient in its recognition of health inequalities and human rights and with better engagement between government and people than presently valued or provided for by the UK Government in England. And yet, the Scottish Government of Covid-19 often frustrated and harmed disabled people, despite expressed commitment to do otherwise.

The pandemic has therefore tested the validity of devolution both ways. It shows that Scotland does not have a fully determining government. However, as regards matters within its powers, Scottish Government does not always discharge the responsibilities that it wants to be judged by. Blaming UK Government for all shortcomings abdicates the power that Scottish Government enjoys. Generally good policy statements must align with better practice and outcomes, including at the point of local delivery, to enable independent living and equal participative citizenship. It is not enough to tender to vulnerability; there must be wellbeing. Otherwise devolved government will delude itself as to its difference and the inequities of the pandemic and its countermeasures will repeat in future crises.

Insofar as broader change is required, the DPO commend to both Scotland and the UK the proposals of the Scottish Social Renewal Advisory Board. It would incorporate key international human rights instruments into domestic law, take action to realise the human rights of disabled people, build inclusive communication into all levels of government, and commit to co-design and deeper engagement with those people in communities who have first-hand experience of poverty, inequality and restricted life chances. The imperative for these changes is summed up in the title of the report, which again can be commended to this Inquiry; the title is “If Not Now, When?”.

My Lady, thank you.

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

I think we can fit you in, Mr Jacobs, just before we break.