Carers Legislation - Consultation on Proposals

Chapter 1 The Case for Change

Introduction

1) We are proud of the progress we have made in supporting Scotland's carers and young carers. (Annex A sets out the definition of carer and young carer for the purposes of the proposed legislation).

2) In partnership with a wide range of statutory and voluntary organisations and with carers and young carers themselves, much has been achieved in order to improve outcomes for carers and young carers.

3) The Scottish Government has made a significant investment amounting to over £112 million between 2007 and 2015 in supporting carers and young carers. This includes: at least £46 million funding between 2012 and 2015 to support carers of older people through the Reshaping Care for Older People Change Fund; over £13 million between 2010 and 2015 for the voluntary sector short breaks fund which is benefitting over 25,000 carers, young carers and cared-for persons; and £29 million to Health Boards for direct support to carers between 2008-2015 which is contributing, amongst other things, to the funding of carers centres and young carers projects across Scotland which provide a wide range of support services including information and advice, advocacy and short breaks.

4) Despite the progress that has been made, there is widespread recognition across Scotland that we need to go further. It is clear from research,^[1] and from other sources including Change Fund and Carer Information Strategy Plans, that more can be done to improve support to Scotland's carers and young carers.

5) The challenges we are facing in terms of the demographic change^[2] impact specifically on carers. It is good that people are living for longer in better health and that older people are significant contributors to Scottish society. Equally, however, the growth in the frail older population with people having dementia and multiple complex conditions is impacting on carers, many of whom are older themselves. There is a pattern emerging now in households of two older people caring for each other in mutually dependent caring situations. People with learning disabilities are outliving their parents and children with complex needs are surviving for much longer.

6) The Census 2011 shows little change since the Census 2001 in the percentage of people (9%) who say that they are carers. However, the figures demonstrate a considerable shift towards high intensity caring based on the number of hours each week that people provide unpaid care. There is an increase in the number of hours of care which unpaid carers carry out each week, with 45% (219,000) of them providing 20 or more hours of care a week, compared with 37% (176,000) in 2001. This is 43,000 more carers caring for over 20 hours each week in 2011 compared with 2001. Annex B sets out the breakdown by hours of caring for every local authority area. If we take hours of caring as a proxy for intensive caring which can have a negative impact on carers who are not adequately supported, then there are more carers requiring more support.

7) Caring can impact on carers in many ways and in doing so, affect their physical and mental health, resilience, finances, employment opportunities, ability to have a life alongside caring and so on. Moreover, The impact of caring is the overriding factor in determining a carer's need for support. A recent study^[3] shows that many people providing over 35 hours of caring each week do not receive practical support and some stop work or retire early to care. In some cases, this is because the services for the cared-for person are not sufficiently flexible to allow the carer to continue in work.

8) Shifting the balance of care from institutional care to care at home or in a homely setting must not create an unmanageable burden on carers to the extent that their health and wellbeing are adversely affected thus impacting on their ability to care.

9) In many circumstances health inequalities and poverty will impact adversely on carers. The largest proportion of households with a carer (28%) are in the 20% most deprived data zones in the Scottish Index of Multiple Deprivation (SIMD).^[4] Many of these carers will have poor health. The same study mentioned in paragraph 7 above shows that more than four in ten carers (48%) have been in debt as a result of caring and more than five in ten carers (52%) said that financial worries affected their health. It is therefore important that local strategies, and the implementation of the proposed legislation, focus on tackling the health inequalities and poverty experienced by carers.

10) There are also carers who tend to be more 'hidden' than others, including Black and Minority Ethnic (BME) carers and Gypsy/Traveller carers, or who might not be considered to be carers including carers of people with substance misuse issues and student carers.^[5] Kinship carers^[6] too can also be carers if the child they are caring for is a child in need and/or if they care for someone else.

11) Additional years of healthy life will give the capacity for more caring by individuals if that is what they want to do. Equally, however, family migration patterns with people living apart from relatives (which can contribute to a decreasing ability or willingness to care), declining family size and increasing life expectancy could lead to a 'deficit' in unpaid care, especially in rural and remote areas. This means that the availability of carers could pose a challenge as we move forward. It is important, therefore, not to further exacerbate the potential 'deficit' position by not fully supporting the existing carer population.

12) The Scottish Government will continue to support carers and young carers through further policy and practice developments and by driving forward the ten Manifesto commitments in support of carers and young carers. A summary of these developments and the Manifesto commitments is at Annex C. Local authorities, Health Boards and the Third Sector also continue to support carers in practical and imaginative ways to improve carers' outcomes.

Programme of reform - other legislative provision

13) More is being done to support carers in recent legislation and in Bills currently before the Scottish Parliament. The Social Care (Self-directed Support) (Scotland) Act 2013,^[7] (SDS Act) which is planned to come into force on 1 April 2014, provides a power for local authorities to support carers. This means that local authorities can support carers and young carers at their discretion. We consult in chapter 4 on whether this power should become a duty, linked to an eligibility framework.

14) Subject to it receiving Parliamentary approval and Royal Assent, the Children and Young People (Scotland) Bill^[8] will also support both carers of disabled children and young carers. This is because it will improve the way services support children and families by promoting the rights and wellbeing of all children through early intervention and cooperation between services with the child at the centre.

15) The Public Bodies (Joint Working) (Scotland) Bill^[9] provides the legislative framework to support improvements in the quality and consistency of health and social care services through integration of health and social care.

16) Integration of health and social care in Scotland is about bringing together planning and delivery arrangements spanning Health Boards and the social care responsibilities of local authorities, with teams whose members are integrated in relation to their shared objectives. New integration authorities will be established, whose membership will be drawn from Health Boards and local authorities, and whose functions and resources will be delegated by Health Boards and local authorities.

17) Strategic planning lies at the heart of integration and is the mechanism via which integrated arrangements will be able to effect real improvements in service provision and outcomes. It will be particularly important that strategic planning for integrated functions and services works effectively within the broader context of Health Board and Council activity - effective integration is about partners and stakeholders across health and social care, and across the public, third and independent sectors, working together effectively, and with patients, service users and carers.

Role of carers' legislation

18) This wide programme of reform, including reform to community planning, will benefit Scotland's population, including carers and young carers. However, over and above this, there is a role for specific carers' legislation which would be the nexus of support to carers and young carers. This consultation makes clear where support is being driven forward through other legislative routes and where carers' legislation can make a further, meaningful difference.

19) There is a fundamental role for carers' legislation to accelerate the progress that has been made, to help ensure greater consistency in support for carers and young carers and to help achieve better and sustained outcomes. It is necessary to take forward an outcomes-based approach within the carers' legislation. This will provide a good fit with community planning and the outcomes-based approach being adopted more generally. Carers' legislation will also inspire renewed debate and ambition for what Scotland's carers can expect.

Other initiatives which impact on carers

20) Equally, however, as we have made clear, carers' legislation cannot operate in isolation nor can it, on its own, transform the lives of all of Scotland's carers. There needs to be better services and care packages for cared-for people. Welfare reform too, which is reserved to the UK Government, also has an impact. With regard to those areas of welfare reform where the Scottish Government has responsibility, Ministers are investing to support vulnerable people. The current funding, along with proposals in the draft Budget, will result in an investment of at least £224 million^[10] over the period 2013-14 to 2015-16. This will help to limit the effects of the UK Government's welfare reforms. The Carer's Allowance (including level and eligibility rules) remains the responsibility of the UK Government.

21) The Expert Working Group on Welfare^[11] established by the Deputy First Minister is now into its second phase of work and is looking at the policies and principles that would underpin a welfare system in an independent Scotland.

22) To accompany the SDS Act, we consulted on draft regulations and guidance on the waiving of charges for the support that carers will receive. The draft regulations were prepared to enforce the commitment made by Ministers during the Parliamentary process for the SDS Act that carers would not have to pay for the support provided directly to them under the SDS Act. The outcome of our consideration of the 46 responses received will be made known shortly. The Regulations will come into force on 1 April 2014.

23) Local authorities' existing charging policies are relevant to both carers and service users. It would not be appropriate in carers' legislation to change the charging policies of individual local authorities. COSLA's charging guidance for non-residential social care services^[12] aims to provide a framework to maintain local accountability and discretion whilst encouraging councils to demonstrate that in developing their charging policies they have followed best practice.

Preventative action

24) Together with the provisions in the Children and Young People (Scotland) Bill, the planned carers' legislation will improve outcomes for carers by making significant changes to the carer's assessment process, to preventative action and early intervention and to support for carers most in need. Carers should be able to access timely information and advice and other forms of early intervention to enable them to care for as long as they wish in good health and to have a life alongside caring.

25) The Commission on the Future Delivery of Public Services^[13] ('Christie report') stated that support should be built around people and their communities. It is necessary to prioritise action to reduce demand for services in the longer run. An estimated 40 to 45 per cent of public spending in Scotland is focussed on meeting 'failure demand' which is short-term spending aimed at addressing social problems. Therefore the imperative is to ensure that there are lasting and sustainable solutions.

26) Since carers can sometimes lack awareness of what is available to support them but can be fully supported by existing services in the community, it is important for health, social care and education professionals and those in the Third Sector to raise awareness with carers, especially if there is no need to 'reinvent the wheel.' Facilitating access to community-based resources will continue to be important.

27) Under the Children and Young People (Scotland) Bill the Named Person, and where appropriate, Lead Professional, will be key to raising awareness and supporting children, young people and families to identify and access appropriate services and support.

Financial issues

28) This consultation suggests a continuum of support for carers from the important first step of identification to a Carer's Support Plan and support. There are pressing financial constraints on local authorities, Health Boards, the Third Sector and the Scottish Government. Within the financial constraints local authorities have to meet their statutory duties in relation to people in crisis. There are of course challenges in shifting investment to preventative measures of support. Important developments such as the
self-directed support legislation and the Reshaping Care for Older People's Programme Change Fund help to address these challenges. Any eligibility criteria or framework developed for support to carers should take account of the preventative approach.

29) As previously stated, despite the challenging financial climate which we now operate within, the Scottish Government remains committed to supporting carers and young carers, with significant investment provided over recent years. In addition, we will work with our key stakeholders throughout this process of consultation and in the lead up to the Parliamentary stages for the legislation to fully identify the costs associated with delivering the requirements within the carers' legislation. This will ensure that support to our carers and young carers is delivered in the most cost-effective way. We are fully aware too of Third Sector and statutory sector capacity issues that would need to be considered and taken into account.

30) A relatively modest investment of £5 million each year for NHS Board Carer Information Strategies has resulted in a lot of progress in supporting carers and young carers. Sometimes, however, this funding has become core funding for projects instead of achieving additionality. Nevertheless, the CIS funding shows what can be achieved: modest input resulting in good outcomes.

Evidence

31) There is a strong evidence base demonstrating what can be achieved in supporting carers. Chapter 4 on Support to Carers refers to the beneficial impact of short breaks in supporting wellbeing. Moreover:

• improved identification of needs and support to carers is likely to lead to savings in terms of public expenditure costs avoided;^[14]
• support to carers by a variety of different means can result in savings by preventing or delaying admission to hospital and residential care;^[15]
• effective local delivery of short breaks can result in financial savings to health and social care;^[16] and
• the Social Return on Investment (SORI) associated with support to carers through carers centres is an estimated £73 million gain (based on five carers centres) for an investment of less than £5 million.^[17]

32) In summary, we see a key role for carers' legislation combined with other legislative provisions and continued policy and practice developments, to drive forward this important agenda in order to improve outcomes for carers and young carers. Carers save the Scottish economy over an estimated £10 billion each year.^[18] Without carers' and young carers' commitment the fabric of Scottish society would crumble. We collectively need to support carers and young carers further.