Guidance on Short Breaks (Respite) CCD 4/ 2008

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SCOTTISH GOVERNMENT COMMUNITY CARE CIRCULAR CCD 4/2008
GUIDANCE ON SHORT BREAKS (RESPITE)

Introduction

Definition/scope

1. The following description of short breaks is used to set the broad scope of this guidance to cover the whole range of short break services that need to feature in local planning. It does not affect the more restricted definitions applicable to Audit Scotland's performance indicators, which only include breaks from caring. (See details at para 40.)

2. Short breaks are provided with the aim of enhancing and developing the quality of life of a person who has support needs and their carer (where there is one), and to support their relationship. The distinctive feature of short breaks is that they should be a positive experience for both. Short breaks can be provided within or outwith an individual's home. 9

3. This guidance uses the term 'short break' to cover all such situations, including:

  • where there is no carer present, but the person with care needs requires a break from their normal situation;
  • 'breaks from caring' where the carer needs a break; and
  • 'emergency crisis support' where a carer needs an urgent break to prevent or respond to a crisis (para 25).

4. 'Respite' appears in the title because it is widely understood but the broader term 'short breaks' is generally used reflecting the broader scope of this guidance.

5. Short breaks can be offered in a wide variety of ways including:

  • in specific short break 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, or fostering);
  • breaks at home through a care attendant or sitting service (often short term but sometimes longer breaks);
  • facilitated access to clubs, interest or activity groups;
  • supported breaks in a chosen setting for the person with care needs either with or without their carer;
  • 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 10.

6. Some forms of day services may also be seen as short breaks (Annex B) 11. Although befriending is primarily 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 from caring. 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.

Purpose of short breaks and evidence of their value

7. The principal evidence of the value of short breaks is based on the perceptions of carers, discussed in reviews of studies such as Making a Break12 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 Scotland13. Short breaks are effective in:

  • helping carers to safeguard their health avoiding physical or emotional exhaustion, and enabling adult carers to continue caring; (While in the case of young carers, the overall aim is rather to prevent inappropriate levels of caring, short breaks have similar benefits of promoting health, wellbeing and social inclusion.)
  • preventing social isolation - providing a break from their usual routine for people with care needs and carers, enabling them to take part in leisure or other activities;
  • overcoming a crisis, such as the carer not coping, cared for person's health deteriorating, or bereavement;
  • making time for carers to spend with family and friends; and
  • helping people (particularly those cared for by their parents) develop independence and prepare for the time when the carer cannot continue caring.

8. Short breaks were 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 short break and reinforces evidence for the value of choice and personalisation in provision. In particular, short breaks are 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 with care needs and for young carers, short breaks provide 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

9. This guidance is to assist partnerships to meet their responsibilities to plan and deliver short breaks but it is also designed to be helpful to other interested parties including service users, carers and service providers. The Scottish Government is promoting the development of strategic approaches to expand and improve short break services through this guidance. Community Care Partnerships should also use it to update their Local Improvement Targets in this area.

Policy Context

10. The importance of supporting carers and enabling people to live independently at home are both well established aspects of the Scottish Government'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. And we understand the importance of supporting young carers and preventing inappropriate levels of young caring, not only for their current social and educational wellbeing, but also for their future. Improving planning and delivery of short breaks has its part to play towards the Scottish Government's over-arching purpose of increasing sustainable economic growth. And it is important in contributing to several of the 15 National Outcomes 14 which underpin that purpose, principally: improving employment opportunities, securing longer, healthier lives, tackling inequality, improving the life chances for children, young people and families at risk and strengthening public services.

11. Short breaks are an important focus of the Strategy for Carers in Scotland15 (1999), the Care 21 Report - The future of unpaid care in Scotland16(2005) and the (then) Scottish Executive Response17 (2006). These documents, as well as the Kerr Report Building a Health Service fit for the Future18(2005) and Changing Lives 19 (2006), contain a number of themes which are fundamental to this guidance:

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

12. Personalisation of services and improving outcomes are also important aspects of our 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

13. Responsibility for the planning and delivery of short breaks lies with Community Care Partnerships and with the local partnerships which plan, design and deliver services for children and young people 20. Local authorities have the lead role in short break planning. Despite this being clear in the 1996 guidance, there is still considerable variation in the extent to which authorities have planned short break services. Partnerships should apply the same rigour to short break planning 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.

14. Strategic plans for short breaks should set out a systematic joint approach for the delivery of both planned breaks and emergency crisis support, including care/carer assessment, eligibility criteria, staff training and information. They should include measures for monitoring provision and need, involving those who use the services in reviewing them against locally agreed standards. They should address transitions from children's 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.

15. To assist with this key area of short break planning, Annex E provides an example template or checklist to help with the local development of such strategies. It is for local partnerships to decide whether to develop specific Short Break 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 local short break planning is split between different strategic plans, it would be good practice to pull out the short break elements into a single document, to:

  • enable local partners to demonstrate leadership and progress in this area;
  • provide clear information about local short break planning; and
  • aid future service planning by showing whether the separate plans cover all they should (e.g. transitions).

Strategic planning - context - children's services

16. National guidance on Integrated children's services planning identifies young carers within a list of examples of children in need. 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. And also to assess the support needs of children and, where appropriate, their carers, which can include short breaks. In addition, 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.

17. 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.

18. 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 break placements is identified for looked after children and others with specific medical, physical and behavioural needs and their carers (including parents or kinship carers) and foster carers.

Strategic planning - context - local authority and NHS responsibilities

19. 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 (breaks) previously provided by the NHS for people whose needs are predominately for social care, are 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 breaks, both planned and emergency crisis support. In particular, local authorities are responsible for short breaks for people assessed as needing them 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;
  • 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 a break from caring.

20. In these cases the health needs of the person receiving a short break 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 short breaks to ensure that they meet these requirements. (See also paras 22 and 23 below on other NHS responsibilities.)

Types of short breaks

21. As noted above, the evidence shows that personalisation is important in ensuring short breaks have positive outcomes for both those with care needs and carers. This can be achieved by making sure that everyone is 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 short breaks. The main types of short breaks are set out in the definition section above and Annex B provides examples of good practice in providing personalised short breaks.

NHS services providing breaks from caring and NHS input to 'social care' short breaks

22. NHS Boards provide a range of services for patients/users that can also have the benefit of providing breaks from caring, 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 break from caring aspect since it allows carers to plan ahead.

23. NHS Boards should review how their services, including equipment, can support short breaks outwith NHS settings by meeting the continuing healthcare needs of the person receiving the break. 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 short breaks. There are also good practice examples of NHS Boards jointly funding short breaks with local authorities in order to ensure that all the care needs of the person receiving the break are met.

Planned short breaks and emergency crisis support

24. Planned, scheduled breaks from caring are an effective way of sustaining caring among adult carers; helping people to remain in the community; and of preventing social exclusion for those with care needs and both adult and young carers. Breaks are most effective if used as an early intervention (preventing crises) and are regular and flexible.

25. However, it is important for people to have access to emergency crisis support, where they need 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.

Choice and personalisation

26. The more traditional model of short breaks provided in residential care home and day care settings will be appropriate for some, where the services are set up to cater for the different requirements of short breaks. 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.

27. 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. There may 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 2122:

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

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

29. Self-directed support provides a valuable option for people to have greater flexibility, choice and control over their short break arrangements. The money provided to meet their assessed needs may be used for a break in a traditional residential setting or alternative models - for example, to pay for a personal assistant to accompany a service 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 23.)

Information

30. Easy access to information is very important to enable both carers and service users to decide about the short break 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.

31. Local authorities have the lead role in ensuring people in their area can access this information but other partners, particularly the NHS and voluntary organisations, will have an important role. The mechanisms should be set out within local strategies for involving and engaging with carers and service users, including local NHS Carer Information Strategies 24, which should set out systems for identifying carers and helping them to access the information and support they need. 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 service users and carers about their short break options. To do this effectively they will need a good knowledge of the services available and how to access further support.

32. More detailed information on short break options should be easily accessible, with carers and service users given the opportunity to discuss their particular needs, identifying the outcomes they want and how short breaks 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).

33. 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 care packages, including short breaks, continue to deliver the agreed outcomes and respond to their changing needs and circumstances.

34. Short Break Bureaux offer a valuable One Stop Shop approach to providing information and access to a variety of breaks. Bureaux aim to make the process of accessing short breaks as streamlined and user-friendly as possible working from information obtained from care/carer assessments. Because short breaks are their speciality, staff are skilled in identifying flexible breaks which are tailored to the needs of the individual and their carers. Shared Care Scotland have published a Short Breaks Bureaux Guide to support the development of these Bureaux. 25

35. Many national voluntary organisations publish information and advice on short break services catering for groups of people with particular needs, and some offer specialist short break facilities or opportunities. Shared Care Scotland provides a central source of information on short breaks along with advice on policy and practice, practitioner networks and learning events 26. Their Online Short Break Information Service ( OSBIS) is a searchable directory of short break services across Scotland, with an emphasis on flexible provision 27.

36. The Scottish Government is commissioning a website and helpline offering comprehensive, up to date information on all aspects of community care for older people. The information service will be live from early in 2009 and may in the future be expanded to cover all community care services for adults.

Access to Services / Eligibility

37. As noted above, short breaks are crucial in enabling many service users and adult carers to protect their health, prevent crises and continue living at home - avoiding the need for much costlier services when caring relationships break down. They are effective in preventing social exclusion, particularly for young carers. And in reducing carer stress and fatigue. Decisions about provision will form a central element of local strategic short break planning. 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 short break options available.

38. Partnerships should therefore publish clear eligibility criteria for short break support based on the outcome of assessments of the service user's needs and/or carers assessments 28. Both planned short breaks and emergency crisis support should be focused on prevention. I.e. designed to help individuals remain at home, sustain caring relationships and prevent crises, leading to better outcomes for carers and service users and avoiding the need for much costlier interventions.

39. This type of preventative approach will include support for service users and carers assessed as being at risk. The list of risks and respite needs at Annex C will help to identify particular risks which short breaks can address for some groups of service users and carers. (This list is not exhaustive. Individuals from other groups will benefit from short break support, depending on the outcome of assessments.) In line with the Scottish Government's overall purpose of sustainable economic growth, eligibility criteria should be designed to enable carers to access employment or education, if they wish to do so. (See also advice on this group at Annex C.)

Monitoring, Quality Assurance and Regulation

40. 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 authorities are currently required to report to Audit Scotland on performance indicators for short break provision for children, adults and older people 29, which only include breaks: ' to benefit a carer and the person he or she cares for by providing a short break from caring tasks. Breaks provided to people without carers are excluded from [the] performance indicators, which measure a key element of support for carers. [They] only concern respite care provided or purchased by the council, or by voluntary [or private] organisations funded for this purpose by the council.' These indicators record nights provided, differentiating between care homes and other settings - to help demonstrate investment in alternative provision. They also record daytime hours, separating hours in day centres and other settings, again to demonstrate investment in alternatives. (As noted at para. 1, the broad definition setting the scope for this guidance does not affect the Audit Scotland PI definitions).

41. Community Care Partnerships should also set and report locally on Local Improvement Targets for short breaks and are encouraged to use the measure on carers' ability to continue to care in the Community Care Outcomes Performance Framework which underpins Local Indicator 29. Social Work Inspection Agency inspections of local authority social work provision include consideration of the availability of short breaks and their value to service users and carers. This includes reviewing how local plans take account of the needs and views of service users and carers. In addition, the views of stakeholders and carers about their experiences of receiving services are sought, using surveys and focus groups during fieldwork.

42. Where short breaks are 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 Care30 apply to breaks offered through any regulated service, including those that rely on volunteers. The standards address the service user's needs and the needs of their carer or family (or both). They are designed to allow for a range of models and to help carers and service users understand the outcomes they can expect from short break services.

43. Some services to the person for whom the service is being primarily provided may incidentally provide a break from caring. These indirect sources of support are not included in the scope of the short break standards.

Charging

44. Separate charging arrangements apply for short breaks provided in residential care and other settings, but local authorities have significant discretion on charging in both cases. Charges are made to the user of a service, not their families.

45. 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. The assessment should still take into account the temporary nature of the stay. The repeal of the liable relatives rule means that local authorities can no longer ask a spouse to contribute to a person's care home fees 31.

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

47. 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 32, including the advice that ' authorities may charge only the person receiving the service and should have regard only to that individual's means in assessing his or her ability to pay. In the Department's view, parents and other members of an adult service user's family cannot be required to pay the charges, except to the extent where another member of the family is acting on behalf of the service user and is therefore responsible for paying any charges on his or her behalf. Local authorities may, in individual cases, wish to consider whether a client has sufficient reliable access to resources, other than his or her own resources, for them also to constitute his or her means ... The most likely instances of this kind will arise in relation to married or unmarried couples. It will be for the authority to consider each case in the light of their own legal advice.'

48. Also COSLA issued guidance in 2006 to improve consistency in local charging policy 33, including the advice that ' Only the person receiving the service is expected to pay charges directly although it is left to the local authority to decide whether a client has reliable access to other resources such as those of a partner'. 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.

49. When considering charging policies, it is necessary to have regard to the wider long 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 short break services are not in the best interests of users or carers, or of the effective use of local authority resources. Poor uptake of short breaks 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.

Page updated: Thursday, November 20, 2008