Human Rights and Social Care Reality.

There is a lot of election talk in the air at the moment. Along with this there is a great deal of media debate and discussion south of the border over the state of social care, it’s under-funding and need of reform. Social care along with health are devolved matters in Scotland and discussions and plans around reform and funding are well under way.

However what happens in England influences the delivery of social care in Scotland regardless of the fact that I would suggest since the commencement of the Scottish Parliament some twenty years ago we have been trying to do things differently and with more collaboration.

Political parties in Scotland are at the stage of both preparing for Westminster elections but also beginning the process of defining positions and policies for the Scottish Parliamentary elections in 2021. As part of this Scottish Labour has put out a consultation on health and social care. Scottish Care has responded to this and we are pleased to publish this response for a wider audience.

Scottish Labour are considering the effective nationalisation of social care and talk of a desire to ‘bring back in house’ social care provision is contained in the paper. Personally I believe such rhetoric and policy articulation needs to be challenged from the perspective of a diminution of citizen choice and a loss of rights.

Indeed I have been led to believe that a number of commissioning officers in Scottish local authorities are investigating whether it would be desirable or possible to bring social care provision in house. I would suggest that this needs to be strongly resisted not least because currently it would be illegal.

So on what basis am I making these assertions?

What is social care?

Within the Labour Party document and elsewhere within the current political debate there is a conflation, sometimes accidental, sometimes deliberate, of what health and social care services are and what they seek to deliver. The equating of the two is damaging and unhelpful. In order to understand how social care (or long-term care) can be viewed we need to understand what it is and what it is not.

The Adult Social Care Reform process which is currently underway acknowledges this lack of robust understanding and as part of its articulation has suggested the importance of talking not just about social care but about ‘social care and support.’

There are many definitions, both legal and philosophical, as to what social care is. Importantly, for instance, social care whilst it may contain services and behaviours which are clinical or medical in nature is not primarily about one’s physiological health.

The Scottish Care working definition of social care is:

‘The enabling of those who require support or care to achieve their full citizenship as independent and autonomous individuals. It involves the fostering of contribution, the achievement of potential and the nurturing of belonging to enable the individual person to flourish.’

In essence social care is about enabling the fullness of life for every citizen who needs support whether on the grounds of age, disability, infirmity or health. Social care and support are holistic in that it seeks to support the whole person and it is about attending to the individual’s well being. It is about removing the barriers that limit and hold back and the fostering of conditions so that individuality can grow, and the independent individual can flourish.

Social care is not about performing certain functions and tasks alone for it is primarily about relationship; the being with another that fosters individual growth, restoration and personal discovery. It is about enabling independence and reducing control, encouraging self-assurance and removing restriction, maximising choice and building community.

Therefore, as many of us have sought to illustrate over the last few years, social care is not equivalent to health but a critical component to the realisation of health.

Human rights.

For me social care has always been profoundly about human rights. It is about giving the citizen control and choice, voice and agency, decision and empowerment. These sentiments are well reflected in the international literature both on the role and purpose of social care – especially independent living and its acceptance as a human right – and in what has been written about ‘long-term care’ , including a growing volume of human rights case law.

Included within the United Nations International Covenant on Economic, Social and Cultural Rights (CESCR) there is the right to health. The right to health is the right to a universal minimum standard of health to which all individuals are entitled without discrimination. What this means in practice has been long debated but there is now a mature conviction that the right to health is not solely the right to physical and clinical health but to psychological, emotional and societal well-being. There has been a considerable volume of debate, not least in the ten meetings of the UN Open-ended Working Group on Ageing (over the last decade and more) that part of what constitutes the right to health for older persons and people with disabilities is the full realisation of ‘rights’ in relation to what the UN terms as ‘long-term care.’

I would argue that such ‘long term care’ or what we would describe as ‘social care’ is inherent to the realisation of the human right to health, and that we need to seek to develop and articulate what are considered to be the key characteristics of exercising a right around ‘long-term care or ‘social care.’ I intend to argue both points more substantially in a future publication later this year (for Human Rights Day on December 10th).

Self-directed Support (SDS)

Human rights and social care practice come together in our SDS legislation. The Self-directed Support legislation in Scotland unapologetically grew out of the independent living movement of the learning and physical disabled communities in the 1970s. With the closure of large-scale institutions there was an emphasis on enabling individuals to live more independent lives. Policies and practice at the time and since emphasised the importance of building social care supports around the life of the individual rather than expecting the individual to fit into what services were available. A one size fits all approach was replaced by the urge to develop and offer bespoke individual services and supports. This has been eloquently re-articulated in the current reform process.

The Social Care (Self-directed Support) (Scotland) Act 2013, is a direct continuation of this earlier work on personalisation. The pursuit of citizen control, independent living, autonomy and choice is not a recent one. It is clearly a pursuit at the heart of the disability civil rights movement and a contributor towards the realisation of human rights.

The Self-directed Support legislation seeks to enshrine in law and social care practice the core values of inclusion, contribution and empowerment through real choice and respect.
The legislation is underpinned by a set of core values which at times mark the link between social care legislation and day to day practice.

The following words describe the values that have helped to inform the guidance:

• Respect
• Fairness
• Independence
• Freedom
• Safety’

It will be clear that such values are rooted in the earlier concepts of personalised services and greater independent living. The Act and Guidance then go on to indicate that there are certain core principles at the centre of self-directed support. Principles are described as ‘....... the means by which we put our values into practice. The 2013 Act (Sections 1 and 2) provides four legal principles

• Participation and dignity
• Involvement
• Informed Choice
• Collaboration.’

The Guidance then goes on to root these principles and values within a human rights-based framework. The Guidance reflects the conviction that the provision of social care and the facilitation of choice as part of this, is a way of protecting human rights.

‘Effective, person-centred social care, determined and led by the individual in partnership with the relevant professional increases the choice for the supported person and provided them with the opportunity to take more control and manage their life.’ (Guidance section 4.9).

The Act and its Guidance envisage various ways in which the values and principles are put into effect. In practice this means that there needs to be as much emphasis placed upon the universal needs of an individual as much as attending to their basic needs. There is a clear distinction between addressing needs which keep you alive and healthy and those which are more holistic and relate to well-being. To remain in relationship, to maintain friendships and be connected up to the community are as important requirements of support as being nourished, healthy and safe.

‘Participation and dignity are core aspects of independent living whereby all supported people should expect to have the same freedom, choice, dignity and control as other citizens at home, at work and in the community. In some respects, the concept of independent living provides a modern interpretation of the social welfare duties provided in the 1968 Act.’ (Guidance section 4.4).

Choice:

Informed choice is therefore critical to the implementation of a human rights-based approach to SDS. Choice is very different within the social care context compared to the health environment.

If I have a medical emergency then personally I want the best clinical care and don’t really want to have much say in who delivers that care as long as they are trained, suitably qualified and supervised. A short term stay in a hospital is very different from the place and people with whom I spend my life. If I am living with a lifelong condition or need support in any way because of life circumstances or age then I most certainly do want to have more choice and control both over who is in my life as a carer and what the nature of that support and care might be. The critical importance of legislation like Self-directed Support is all about embedding that control and choice, building those rights with the citizen including fiscal and budgetary control.

This has implications for the social care ‘market.’ At the moment within the legislation there is a requirement to ensure the diversity and reality of this ‘choice’ of provision for citizens. (section 19). Is it possible to fulfil this requirement and Statutory Duty if you only offer one provider (in-house provision)? Such proposals not only fail to understand that we never had a national social care system, but that historically social care was delivered in large part by charitable bodies such as the churches. But the suppositions also challenge the real potential creativity of self-directed support which was about enabling local individuals and communities to recognise and use their own assets to care for those in their midst. Where would such micro community provision stand in a nationalised system?

So, in our discussions and debates on the future of social care in Scotland I do not think we can avoid the reality that in practice and in law social care is a human rights issue and any changes to its delivery has to be rooted in human rights.

Donald Macaskill

CEO Scottish Care

@DrDMacaskill

You can view a copy of Scottish Care's response to the Scottish Labour Party consultation below.

Scottish Labour Party Health Care - Scottish Care Response Aug 19f (003)