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DRAFT RESPITE GUIDANCE- SEPTEMBER 2007

Local Authority Directors of Social Work
Local Authority Directors of Children Services

GUIDANCE ON RESPITE CARE

Summary

1. This guidance provides advice to adult Community Care Partnerships and to agencies engaged in children services on the planning and delivery of respite care. It should also be of interest to other individuals and organisations involved in social care. Respite care is an essential part of the overall support provided to unpaid carers and those with care needs helping to sustain the caring relationship, promote health and well being and prevent crises.

2. This guidance replaces Scottish Office Circular SWSG 10/96¹. Its main purpose is to help local service planners improve respite provision in line with the overall principles of enabling self care and working with carers as partners in care, by:

• improving respite planning;
• shifting the balance towards preventative support; and
• personalising support to improve outcomes both for carers and those with care needs.

3. These themes are important aspects of the Scottish Government's overall policy direction for both health and social care services, in line with the Kerr Report Building a Health Service fit for the Future (2005) ², Changing Lives (2006) ³ and the Care 21 Report The Future of Unpaid Care in Scotland (2005) ⁴. Personalisation of services and improving outcomes are also consistent with the Executive's priorities for services for children and young people described in the Getting it right for every child programme and in guidance on integrated services planning and quality improvement.

Action and expected outcomes

4. Recipients should use this guidance to update their strategic planning of respite services and their Local Improvement Targets for community care services. As a consequence, we would expect to see:

• strategic approaches to local planning, delivery and evaluation of respite and short breaks;

• carer and service user involvement in determining the shape, direction and level of provision of local respite and short break services;
• greater choice, flexibility and equity in the provision of services; and

• carers and service users feeling supported by the respite and short break services provided (linked to proposed National Outcome Measures).

SCOTTISH EXECUTIVE COMMUNITY CARE CIRCULAR CCD/XXX

DRAFT GUIDANCE ON RESPITE CARE

Introduction

Definition⁵

1. Respite (sometimes referred to as short breaks) encompasses a wide range of different short term services. The common factor is not what service is provided but its purpose - to provide a break which is a positive experience for the person with care needs and the carer where there is one. Respite can be offered in a wide variety of ways including:

• breaks in respite-only units (specialist guest houses, community flats, purpose-built or adapted houses);
• breaks in care homes;
• breaks in the home of another individual or family who have been specially recruited (such as adult placement schemes);
• breaks at home through a care attendant or sitting service;
• facilitated access to clubs, interest or activity groups;
• holiday breaks;
• supported breaks for the person with care needs and their carer together;
• befriending schemes where volunteers provide short breaks;
• peer support groups ( e.g. for young carers);
• breaks in supported accommodation; and
• breaks using self-directed support ⁶.

2. Some forms of day care may also be seen as within the definition of respite ( Annex B) ⁷. Although befriending is a service for the person needing care, it is included because breaks providing alternative recreationwith a befriending escort, which are regular and long enough, can also provide a break for the carer.

3. Other support, such as providing minor equipment can be vital to help facilitate breaks in some of the above settings or in the home of family or friends.

4. In this guidance, the term 'respite' is mainly used but 'break' is also included. Unless specifically described in the text, both terms refer to situations where a short break is needed, both where there is a carer looking after someone and where a service user has no carer.

Evidence of value of respite and purpose of respite

5. The principal evidence of the value of respite care is based on the perceptions of carers, discussed in reviews of studies such as Making a Break⁸ and confirmed by the 'Voices of Carers' survey which formed part of the evidence base of the Care 21 Report The future of unpaid care in Scotland⁹. Respite is effective in:

• helping people (particularly those cared for by their parents) develop independence and prepare for the time when the carer cannot continue caring.

6. Respite was found to be most effective in providing a break for carers when they were confident in the arrangements and did not need to worry about the person with care needs. This finding supports the observation that some carers and those they care for can be unwilling to take up some types of respite and reinforces evidence for the value of choice and personalisation in respite provision. In particular, respite is seen as effective in preventing crises and supporting those with care needs and their carers to maintain their health and continue living at home. For young people respite provides opportunities to participate in activities with their friends and peers vital to their personal, social and educational development, contributing to their self confidence and wellbeing.

Purpose of guidance

7. This guidance is to assist partnerships to meet their responsibilities to plan and deliver respite care but it is also designed to be helpful to other interested parties including service users, carers and service providers. The Executive is promoting the development of strategic approaches to expand and improve respite services through this guidance. Community Care Partnerships should also use it to update their Local Improvement Targets for respite.

Policy Context

8. The importance of supporting carers and enabling people to live independently at home are both well established aspects of the Scottish Executive's approach to health and social care. We recognise the crucial contribution which unpaid carers make to Scottish society and that unpaid care is likely to grow in importance. The Strategy for Carers in Scotland¹⁰ (1999) has been refocused through the Care 21 Report - The future of unpaid care in Scotland¹¹ (2005) and the Executive's Response ¹² (2006). The response focuses on four priority areas, including respite and carer health.

9. These documents, as well as the Kerr Report Building a Health Service fit for the Future¹³ (2005) and Changing Lives¹⁴ (2006), contain a number of themes which are fundamental to this guidance:

• working with carers as partners in providing care;
• joint-working;
• shifting the balance of care towards preventative support and enabling self care; and
• personalisation of support.

10. Personalisation of services and improving outcomes are also important aspects of the Executive's priorities for services for children and young people described in Getting it right for every child and in guidance on integrated services planning and quality improvement.

Strategic Planning

11. Responsibility for the planning and delivery of care services including respite lies with Community Care Partnerships and with the local partnerships which plan, design and deliver services for children and young people ¹⁵. Despite this being clear in the 1996 respite guidance, there is still considerable variation in the extent to which authorities have planned their respite services. Partnerships need to apply the same rigour to respite services as they do for services in the round. This will require agreement on how plans will be developed and coordinated, what resources are available and how these will be directed.

12. Strategic plans for respite should set out a systematic joint approach for the delivery of both planned and emergency respite, including care/carer assessment, eligibility criteria, staff training and information. They should include, as well as the points above, measures for monitoring provision and need, involving those who use the services in reviewing them against agreed standards. They should address transitions from children to adult services and from adult to older peoples services. Plans should identify responsibilities for delivering measurable short, medium and long term goals and be based on:

• a shared vision setting out the shape and direction of service development;
• clearly stated targets for improving services;
• multi-agency development and delivery, involving Local Authorities, NHS, carers and service users, voluntary sector organisations and service providers; and
• clear understanding of the range and volume of provision, its strengths, weaknesses and gaps, based on local needs including feedback from service users and carers.

13. Executive guidance on Integrated children's services planning includes young carers within a list of examples of children in need. The Quality Improvement Framework for Integrated Services for Children also refers to respite care (under the "Nurtured" heading). The Getting it right for every child programme builds on this approach by placing the needs of the child at the centre of service delivery, regardless of what these needs might be, and encourages local agencies to work together to meet needs though individualised plans. Local authorities have a duty under the Children (Scotland) Act 1995, to safeguard and promote the interests of children in need, including disabled children and young carers. Also to assess the support needs of children and, where appropriate, their carers, which can include respite.

14. The Arrangements to Look After Children (Scotland) Regulations 1996 applies conditions (including regular review) to short-term placements of children where:

(a) all the placements occur within a period which does not exceed one year;
(b) no single placement is for a duration of more than 4 weeks; and
(c) the total duration of the placements does not exceed 120 days.

15. National Care Standards will also apply to the provision of such placements. The NHS should work closely with its partners to ensure that the need for short-term (respite) placements is identified for looked after children and others with specific medical, physical and behavioural needs and their carers, including parents, kinship and foster carers.

16. Joint planning needs to recognise not just the intended direction but also any shifts in resourcing between agencies in the way services are provided, and the implications that has for them. Short-term care (respite) previously provided by the NHS for people whose needs are predominately for social care is increasingly being commissioned by local authorities. It is important that partnerships plan such changes together, with the involvement of users and carers. NHS Boards and local authorities should therefore agree their complementary responsibilities for short-term health care respite and social respite care, both planned and emergency. In particular, local authorities are responsible for respite for people assessed as needing it for social care and NHS Boards are responsible for addressing the needs of:

• people assessed as having complex or intense health care needs and who require specialist clinical supervision during a period of short-term care;
• people who require or could benefit from active rehabilitation during a period of short-term health care (respite);
• people who are receiving a package of palliative care in their own homes but who would benefit from having a period of in-patient or day hospital care. In many cases, this will bring the added benefit of respite to the carer.

17. In these cases the health needs of the person receiving respite often (but not always) require it to be provided in a health care setting. NHS Boards should review local guidelines on responsibility for continuing care and/or respite to ensure that it meets these requirements. (See also paras 20 and 21 below on other NHS responsibilities.)

18. It is for local partnerships to decide whether to develop specific respite strategies or to include their strategic planning in wider Carers Strategies, Community Care Plans, Integrated Children Services Plans or plans for specific groups of service-users. However, where separate strategies are developed, it is important for these to identify any opportunities for coordinated effort and joint working.

Types of Respite

19. As noted above, the evidence shows that personalisation is important in ensuring respite has a positive outcome for both those with care needs and carers. This can be achieved by making sure that those with care needs and carers are aware of their options and by building in as much flexibility as possible to adjust provision to individuals' needs. Annex A sets out the main indicators of good respite. The main types of respite are set out in the definition of respite services above and Annex B provides examples of good practice in providing personalised respite.

20. NHS Boards provide a range of services for patients/users that can also have the benefit of providing respite, despite that not being their primary purpose. These can include day services for people with a learning disability, a mental health problem or a physical disability; and day hospitals and assessment services for frail older people and older people with mental health problems. In most cases, access to these services will be regular and frequent as part of the planned care programme for the service user. This enhances the respite aspect since it allows the carer to plan ahead.

21. NHS Boards should review how their services, including equipment, can support respite outwith NHS settings by meeting the continuing healthcare needs of the person receiving respite. For example, there is already a well established system for providing renal dialysis for patients on holiday within the UK and there are also many local arrangements where NHS community services support other agencies that provide respite. There are also examples of NHS Boards jointly funding respite services with local authorities in order to ensure that all the needs of the person receiving respite are met.

22. Planned, scheduled respite is an effective way of sustaining caring, helping people to remain in the community. It is most effective if used as an early intervention (preventing crises) is regular and flexible.

23. However, it is important for people to have access to emergency respite, where a carer needs an urgent break. This can be to respond to or prevent a crisis, possibly to protect individuals or carers who are at risk. For example due to ill health of the carer, a deterioration in the health of the person they are looking after, or to respond to a crisis such as a bereavement. Services will need to be available at short notice, with the duration unknown, but limited.

24. The more traditional model of respite provided in residential care home and day care settings will be appropriate for some but carers and service users benefit from being able to select from a wider variety of alternative options to satisfy different needs and circumstances, which may change over time.

25. The aim should be to provide service users and carers with greater choice and flexibility to determine, how, where and when their services are provided. Inevitably there will be limits to the extent to which every service can be individually tailored, but carers and service users have identified certain factors that are particularly important ¹⁶¹⁷:

• access to respite and short breaks in different settings;
• the option to have a break with or without the cared for person;
• access to respite at different times of the day/week;
• a choice in the length of break;
• flexibility over when respite is arranged; and
• confidence in the quality of care provided.

26. Increasing the range and flexibility of short break services should therefore be central to local strategic planning, moving away from an over reliance on care home and day care services.

27. Self-directed support provides a valuable option for people to have greater flexibility, choice and control over their respite arrangements. The money provided to meet their assessed needs may be used for a short break in a traditional residential setting or alternative models - for example, to pay for a personal assistant to accompany a user on a holiday break, (with or without the carer), or for children to have a short break with a specialist care worker. This type of model can enable all parties to enjoy a family holiday. (Limits on the length of stay purchased in residential accommodation are set out in national guidance ¹⁸.)

Information

28. Easy access to information is very important to enable both carers and service users to decide about the respite services and support that would be best for them. Information should cover the full range of services available; how to access services; assessment procedures; charging policies or eligibility criteria that apply and where to go for more detailed guidance and support.

29. The mechanisms for communicating this information should be set out within local strategies for involving and engaging with carers and service users, including Carer Information Strategies ¹⁹. In many areas this will include advice from local carer centres. Particular attention should be paid to targeting information to under represented groups such as black and minority ethnic communities. Health and social care professionals will need to be proactively involved in informing carers and service users about their respite options. To do this effectively they will need a good knowledge of the services available and how to access further support.

30. More detailed information on respite options should be easily accessible and carers and service users given the opportunity to discuss their particular needs, identifying the outcomes they want and how respite might help achieve them. This could form part of the care/carer assessment and review (but other means of accessing this support and guidance should be available).

31. It is important that carers and services users understand that assessment is the start of an ongoing process, where any service provided is regularly reviewed. This will ensure that the care package, including respite care, continues to deliver the agreed outcomes and responds to the carer and care recipient's changing needs and circumstances.

32. Respite Bureaux offer a valuable "One Stop Shop" approach to providing information and access to a variety of respite breaks. Bureaux aim to make the process of accessing respite as streamlined and user friendly as possible working from information obtained from care/carer assessments. Because respite is their speciality, bureaux are successful in identifying flexible breaks which are tailored to the needs of the individual and their carers.

33. Many national charitable organisations publish information and advice on short break and respite services catering for their particular client groups, and some offer specialist respite facilities or short break opportunities. Shared Care Scotland provides a central source of information on these services along with advice on policy and practice, practitioner networks and learning events ²⁰.

Access to Services / Eligibility

34. As noted above, respite is crucial in enabling many carers and service users to protect their health, prevent crises and continue living at home. Decisions about provision will form a central element of local strategic planning for respite. It is clearly good practice for service users and carers to be involved in the development and review of eligibility criteria and priorities and for all parties to understand these and the respite options available.

35. Partnerships should therefore publish clear eligibility criteria for support based on the outcome of assessments. Both planned and emergency respite provision should be:

• Focused on prevention - designed to help individuals remain at home, sustaining caring relationships and preventing crises;
• Available for those most at risk, such as:
• • carers who themselves suffer from ill health or disabilities;
  • those with the most intensive caring responsibilities, caring for people with long term conditions which are fluctuating or deteriorating;
  • older carers;
  • young carers;
  • co-resident carers;
  • carers of children or adults with unpredictable or challenging behaviour, such as people who misuse substances and people with mental illness or dementia;
  • those caring for a long time;
  • carers of people with a terminal illness; and
  • carers with multiple caring roles.
• Designed to enable carers to remain in employment, if they wish to do so.

36. Particular risks and characteristics to be taken into account for many of these groups are explained in more detail at Annex C.

Monitoring, Quality Assurance and Regulation

37. As noted above, effective service planning needs to be informed by a clear understanding of the range and volume of existing provision, its strengths, weaknesses and gaps, based on local needs including feedback from service users and carers. Local partnerships are already required to report to Audit Scotland annually on performance indicators for respite provision for children, adults and older people. Community Care Partnerships should also set and report locally on Local Improvement Targets for respite and report on [planned] National Outcome Measures including those on carer assessments and carers feeling supported to continue caring.

38. Where respite is offered in care services defined under the Regulation of Care (Scotland) Act 2001 ( e.g. care homes or day care services), these are regulated by the Scottish Commission for the Regulation of Care ('the Care Commission'). The Care Commission regulates these services under the Act (and regulations), taking account of the appropriate National Care Standards ( NCS). In addition to service specific NCS, the Standards for Short Breaks and Respite Care ²¹ apply to respite offered through any regulated service. The standards address the service user's needs and the needs of their carer or family (or both). They cover some services that rely on volunteers. The respite standards are designed to achieve a balance in which service quality is guaranteed and a range of models can be developed.

39. Some services to the person for whom the respite service is being primarily provided may incidentally provide the carer with a break. These indirect sources of support are not included in the scope of the respite standards.

Charging

40. Separate charging arrangements apply for respite provision in residential care and other settings, but local authorities have significant discretion on charging for respite care in both cases. Charges made to adult service users should not extend to their families or carers.

41. For the first eight weeks in a care home, local authorities do not have to formally assess a person's ability to contribute to the cost. During that period the authority should only charge what it considers reasonable for the resident to pay, having regard to his or her resources and financial obligations, particularly for maintaining his or her own home. The basis for any charge should be made clear. After eight weeks of continuous care authorities must charge the resident at the standard rate for the accommodation and carry out a formal assessment of ability to pay, in line with the regulations. The assessment should still take into account the temporary nature of the stay. The repeal of the liable relatives rule [will mean] that local authorities can no longer ask a spouse to contribute to a person's care home fees ²².

42. Charging for other respite accommodation, such as holiday breaks or other supported accommodation, will vary according to its management and provision.

43. Local authorities have discretionary powers to charge for non-residential care services, excluding those classed as free personal care for those aged 65+. General guidance on adult home care charging was issued in 1997 ²³ and COSLA issued guidance in 2006 to improve consistency in local charging policy ²⁴. As for residential care, authorities should not charge more than an individual could reasonably afford to pay. The basis for making any charge should be clear and made readily available on agreeing the service.

44. When considering charging policies, it is necessary to have regard to the wider longer term effects. In line with the principle of working with carers as partners in the provision of care, cumbersome assessment of ability to pay, and charging policies which discourage the use of effective respite services are not in the best interests of users or carers or of the effective use of local authority resources. Poor uptake of respite which increases the burden on carers can lead to caring relationships breaking down and a subsequent need for more expensive services such as permanent residential care.

Scottish Executive
Primary and Community Care Directorate Community Care Division
August 2007

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