Adult social care: independent review

Chapter 3 A human rights based approach

"It shouldn’t be a fight to get the support I need, nor a fight to keep the support I have.”

Respect for the fundamental dignity of each and every person lies at the heart of human rights, as do the principles of equality and individual autonomy. The Covid-19 pandemic has intensified pre-existing inequalities and a lack of focus on rights, especially for older people, disabled people, people from minority ethnic communities and people from disadvantaged communities. This underlines our belief that more attention must to be paid not only to recognising but to realising human rights, equality and participation for people using social care support.

In summer 2020, the Scottish Human Rights Commission (SHRC) carried out monitoring research into the impact of the Covid-19 pandemic, and how it has been managed, on people's rights in the context of care at home and support in the community. SHRC published its report in October 2020^[13]. It details how legislative, policy and practice decisions taken by public authorities have affected the rights of people who access, or wish to access social care support, unpaid carers, and people who work in social care support. The report makes 24 recommendations, some of which call for urgent action to resolve immediate human rights concerns.

Similarly, the Equality and Human Rights Commission (EHRC) published a report in December 2020^[14] about its findings on the impact of the pandemic on equality and highlighted the diminution that many people using social care support have experienced. In addition, the Glasgow Disability Alliance^[15] and Inclusion Scotland^[16] undertook surveys of disabled people to understand and put on record their experiences of the pandemic.

Strengthening the rights of citizens

We asked people about respect for their rights when using social care services and supports in recent years as well as during the pandemic. People told us about their experiences over a much longer timeframe, and in many cases over very many years.

We heard a few examples of where human rights had been put at the core of services and supports and where staff and supported people alike felt valued and their rights upheld. We also listened to positive experiences where people were managing their own budget and had put in place the support they wanted, and that was helping them to lead fulfilling lives in their local communities. However, we heard from many people that their human rights were not being upheld and that equality was not at all obvious, nor was there a focus on supporting and ensuring individual autonomy and participation in decision making.

Access to social care services and supports presented particular challenges for many people and there was not clear understanding about what their rights to social care and support were. These rights must be made more transparent by "duty bearers". Where rights are not upheld people must understand the means by which they can complain or seek redress and this must not be so cumbersome as to make that an impossible process for people to embark upon. They must also be provided with appropriate support in this process.

The assessment process was difficult for many and was variously described as intrusive, not focused on rights or equality, not focused on assets or potential but on deficits, reduced to identifying care tasks, and always overly focused on eligibility, which was frequently set at "critical needs", and costs. Most damningly, one person summed up her experience of the assessment process as "brutal".

Charging for services and supports that had been assessed as needed also presented major issues for many people, as this reduced their income and had a real impact on their choices, limiting their options and control about what they wanted to do with support in place. Charging is considered in more detail in Chapter 11 on finances.

Decision making, participation and self-directed support

Many people did not feel they had the opportunity to be a partner in the decision making process about their care and support, and nor did their unpaid carers or families. Some people felt totally unprepared for the assessment process and had not had all of the options for self-directed support set out, explained or offered. A network of support and brokerage services is in place in parts of Scotland that can help people prepare for assessment, including identifying what goals or outcomes people want to achieve with support. This has been crucial in highlighting the choices and possibilities people have across the self-directed support options but it is not available to everyone and not everyone who would benefit from this support knows about it.

There is also not enough local independent advocacy (either individual or collective) available to people to support them in this process, nor to ensure that support plans are a co-produced effort involving other people whom the supported person wishes to involve, including families and carers. A recent ALLIANCE and Self-Directed Support Scotland report^[17] identified that around 50% of people had not had access to all of the self-directed support options. Independent advocacy should also be available assist people when things do not go well and they wish to complain or to seek redress.

Kiana Kalantar-Hormozi

I've had a traumatic experience trying to get the support hours I need to live independently, stay healthy and have a full life like everyone else.

I can't live fully independently because of the piecemeal support package I have. My arm movement is limited, I'm at risk of choking and need support to shower, turn in my bed at night and do all my breathing and other exercises that I have to do to keep healthy. So, the support I don't have impacts directly on my health, social, work and family life.

To move my arms and legs, go to the bathroom, take a shower and exercise when I choose; those things are fundamental rights for me to be able to live independently.

I want everything in the system to change. The funding allocated to facilitate someone's human rights and independence is an extension of healthcare.

Start listening to disabled people. We are the solution, we're not the problem. If you give people what they need to have a full and healthy life, that in turn has benefits to society as a whole. I think we need to stop thinking that disabled people are supposed to be patronised or locked up in their homes.

"Start listening to disabled people. We are the solution, we’re not the problem.”

Some supported people had taken part in "good conversations" about their assets and strengths, together with the assets of their local communities, and what would help them to lead a fulfilling life, rather than being assessed for all that was wrong, and had been part of joint decision making about their support plan. However, this could then be hampered by having to go through a bureaucratic process of approval, that they were not part of, leading to changes in the plan because it could not be delivered within costs or provided in the way planned.

People told us how important it was to them to be involved in decisions about their life and to be supported to do so, when required. We were pleased to hear about the work underway on developing supported decision making for people who lack capacity, who beyond most have experienced all decision making being made by others on their behalf, based on their past wishes and preferences but ultimately with a proxy making those decisions for them. People want to be regarded and treated as experts on their own needs and preferences, and the extent to which they wish to be active citizens, participating in life and in their local communities in the way they want.

Many people told us that they do not want to be treated as passive recipients of services that are provided. They want social work professionals to work with them to help plan how support will assist them in achieving their own goals, aspirations and personal outcomes, not to limit possibilities from the outset because of budgets or to plan without them the services and support that can be made available. An effective relationship, based on trust and mutual regard between the social worker and the supported person, and whoever they wish to involve in the assessment, is absolutely key to planning support.

The lack of portability of support packages and plans between different local authority areas is a further issue that serves to diminish people's rights and self-determinism. The whole process of assessment and decision making has to be repeated if a supported person moves home or residence from one local authority area to another. While everyone understands that the range of services and supports available in the larger conurbations in the central belt cannot be replicated in full in more rural or remote communities, it is unnecessary and unfair for previous assessment and support plans to be stopped and entirely new ones developed, often after much delay and at great distress to individuals. The result is wasteful with much unnecessary duplication of effort by professional staff.

Prevention and extending eligibility

As a result of access to social care support being based on eligibility, where the starting point means that you have to be in critical need and at crisis point in your life, it is little wonder that there is a lack of focus on prevention and early intervention, and few resources targeted at providing a little support to prevent the crises from occurring in the first place. This needs urgent attention and priority, and is picked up later in the report.

Social workers and their representative organisations told us about their frustrations with this process, which put social workers in the position of gatekeeping budgets on behalf of cash-strapped Local Authorities, and prioritising cost and eligibility considerations above working with people to plan their support and to ensure access to high quality support. As one social worker put it to us: It's the equivalent of NHS staff having to make a case for funding every time someone needs a blood test.

"It’s the equivalent of NHS staff having to make a case for funding every time someone needs a blood test.”

Taskforce for Human Rights Leadership

Taking a human rights approach is about using the comprehensive set of international human rights established and adopted worldwide. The Scottish Government has established a Taskforce for Human Rights Leadership^[18], jointly chaired by the Cabinet Secretary for Social Security and Older People, and Professor Alan Miller. Professor Miller was previously the Chair of the First Minister's Advisory Group on Human Rights Leadership and we have ensured that close links have been forged between these key pieces of work.

The Taskforce, which is due to report in March 2021, is considering the incorporation of international treaties and conventions on human rights into Scots law, including the International Covenant on Economic, Social and Cultural Rights, the Convention on the Elimination of all Forms of Discrimination Against Women (CEDAW), Convention on the Rights of Persons with Disabilities (CRPD), and the International Convention on the Elimination of All Forms of Racial Discrimination (CERD). As well as this, the Taskforce is considering how to better support delivery of these rights and is looking at a range of additional support that would be required to underpin incorporation of these rights into Scots law, with which we have a great deal of agreement:

• Practical steps to build the capacity of those delivering public services, including workforce development and training.
• Accountability, including regulations, standards, audit measuring and ensuring capacity to take a human rights based approach towards their work.
• Rapid access to justice and redress and in the instance of systemic failure with potential for particular bodies to undertake this on behalf of individuals.
• Strengthening the role of rights holders through public education and the provision of support through independent advocacy, more status to third sector agencies who can articulate the rights of rights holders, allocation of resources, equality impact assessments etc., and based on international law and remedies.

"We no longer have a life outside full time work and our family home resembles a care home. Our bills have trebled and quality of life decreased – disappeared in fact.”

Recommendations

Our recommendations for establishing a human rights and equality approach to social care services and support are rooted in the work to consider incorporation of international treaties into domestic legislation, and the recent experiences during the pandemic that exposed structural inequalities and pre-existing inadequacies in the current social care support system:

1. Human rights, equity and equality must be placed at the very heart of social care and be mainstreamed and embedded. This could be further enabled by the incorporation of human rights conventions.

2. Delivering a rights based system in practice must become consistent, intentional and evident in the everyday experience of everyone using social care support, unpaid carers and families, and people working in the social care support and social work sector.

3. People must be able to access support at the point they feel they need it, including for advice and signposting to local community-based resources and help, and for barriers to this, such as the current eligibility criteria and charging regime, to be fundamentally reformed and removed, to allow a greater emphasis on prevention and early intervention.

4. People should understand better what their rights are to social care and supports, and "duty bearers", primarily social workers, should be focused on realising those rights rather than being hampered in the first instance by considerations of eligibility and cost.

5. Where not all needs can be met that have been identified as part of a co-production process of developing a support plan, these must be recorded as unmet needs and fed into the strategic commissioning process.

6. Informal, community based services and supports must be encouraged, supported and funded to respond appropriately to the needs of local citizens, including for preventative and low level support.

7. A co-production and supportive process involving good conversations with people needing support should replace assessment processes that make decisions over people's heads and must enable a full exploration of all self-directed support options that does not start from the basis of available funding. Giving people as much choice and control over their support and care is critical.

8. More independent advocacy and brokerage services, including peer services, must be made available to people to ensure that their voices are heard, and to help prepare for participation in planning and organising their support.

9. When things do not work well for people and their rights have not been upheld, they must have rapid recourse to an effective complaints system and to redress.

10. Packages of care and support plans must be made more portable and supported people should not have to fight to retain support because they have moved home.