Carers (Scotland) Act 2016: statutory guidance - updated July 2021

Part 6: Information and advice for carers, including short breaks services statements

Chapter 1 – Information and advice for carers

Summary

Section 34 requires each local authority to establish and maintain an information and advice service, covering a range of mandatory areas for carers either resident in that local authority area, or caring for someone in that local authority area.

Section 36 requires Scottish Ministers to prepare a carers' charter, setting out the rights of carers as provided for in or under the Carers (Scotland) Act.

The duties under sections 34 and 35 are delegated to integration joint bodies under the Public Bodies (Joint Working) (Prescribed Local Authority Functions etc.) (Scotland) Amendment Regulations 2017^[159] and the Public Bodies (Joint Working) (Prescribed Local Authority Functions etc.) (Scotland) Amendment (No.2) Regulations 2017^[160].

For the purpose of this chapter the terminology 'local authorities' will continue to be used in place of integration joint boards or integration authorities.

Reasons for information and advice for carers

6.1.1. Providing good quality, appropriate, and timely information and advice to carers has dual benefits of improving the health and wellbeing of carers, and the cared-for person, reducing the potential need for, and costs of, crisis management.

6.1.2. The aim of information and advice services for carers is to enable them to access independent and comprehensive information and advice, to assist them with decision making in relation to their caring role and to have a life alongside caring.

6.1.3. Signposting to services alone is often ineffective at providing people with the support they need^[161]. A proactive approach following early identification of the carer that goes beyond signposting and starts the conversation between carers and identified services is therefore recommended as good practice. Initially this may include arranging introductions to services/ direct referrals, rather than solely signposting to services to help reduce barriers that exist between information and advice provision to carers and support uptake.

6.1.4. This helps mitigate risks around carers not accessing appropriate advice or services, and the long-term wellbeing benefits and cost savings this may have. This research also recommends that carers are meaningfully involved in the design of support systems to ensure their effectiveness.

6.1.5. As part of information and advice to carers, short breaks services statements are expected to set out the range of different short breaks services and support that is available to carers in a local authority area and nationally.

6.1.6. It is well recognised that short breaks can be of great benefit to a carer's wellbeing, and drawing relevant information together in one place will help carers to make decisions on the support they receive.

6.1.7. A major barrier for carers' access to short breaks is the lack of information and advice surrounding local provision, with 43% of carers citing a lack of knowledge of how to access services^[162].

Duty to provide information and advice services

6.1.8. Section 34(1) requires local authorities to ensure that relevant carers have access to quality, comprehensive and consistent information and advice services to allow carers to be aware of support available. Relevant carers are defined in section 31(5) of the Act to include both: a) carers who reside in that local authority area, and b) carers who provide or intend to provide care for someone in that local area.

Timing and targeting of information and advice according to need

6.1.9. The intention is that information and advice services should be provided in an appropriately timely manner. Information and advice will be most effective where it takes account of individual carer's needs and is provided at an appropriate time. For instance, a raft of information and advice received at the onset of a caring role may be overwhelming and may not be the best way to fulfil the carer's needs. A carer may require time to come to terms with the pressures of the caring role.

6.1.10. There are differing information and advice needs associated with different caring roles. It is recommended that, in providing information and advice services, local authorities are mindful of the potentially changing nature of the caring role. Caring roles broadly differ across each of three main axes:

• the specific stage of a carers' journey (e.g. new to caring, caring long term, ending a caring role);
• the specific condition(s) of the cared-for person (e.g. physical disability, mental illness, dementia); and
• the specific circumstances of the carer (e.g. young carer, older carer, rural carer, minority ethnic carer).

6.1.11. Where a carer already has an ACSP or YCS, it is recommended that their identified needs and personal outcomes should be considered when providing appropriate information and advice. However, information and advice provision can also play an important preventative role and need not wait until an initial ACSP or YCS has been prepared.

Reviewing and building on existing provision

6.1.12. Local authorities may provide information and advice services as appropriate in their area in line with existing services, local demand and other considerations.

6.1.13. It is recommended that information and advice services should build on the existing networks of carer centres and other local information and advice providers. This approach will ensure that local knowledge and experience is retained and embedded in any system that is developed.

6.1.14. Carer Information Strategies (CIS) have been an important lever to drive forward improved outcomes for adult carers and young carers. It is recommended that local authorities use existing CIS health and social care networks to ensure that local knowledge and experience is retained and embedded in any information and advice service that is developed. This may include, e.g. carer centres, young carer projects, and appropriate training to meet the needs of carers in their area.

6.1.15. Mapping existing provision may assist local authorities and their partners to determine whether services are robust enough to cover a range of carer needs; whether any new services are required; and where additional resources can be best targeted and a co-ordinated approach developed.

6.1.16. Local authorities may wish to approach this from a carer journey perspective using the carer voice as a guide, which would also consider the linkages between parts of a service and equity of services across that authority area.

6.1.17. Consideration of workforce capability and capacity would form an important part of this process, as would the system-wide outcome measures to be able to evaluate the efficacy of the services provided.

6.1.18. In addition to specific information and advice services for carers (for instance those provided by local carer centres), other sources of information and advice may be relevant, such as:- Citizens Advice Scotland; local authority run Advice Shops; Jobcentre Plus; Royal National Institute of Blind People; Macmillan Cancer Information and Support Centres.

6.1.19. Particularly for universal services it will be important to consider resource allocations, and therefore capacity, alongside the sources of information and advice themselves.

Collaboration and partnership working

6.1.20. Local partnership working is strongly encouraged when developing information and advice services, including by working closely with health boards and third sector organisations (including carer centres) to design and deliver these information and advice services to ensure effective integration and minimise duplication.

6.1.21. A local authority's duty to provide information and advice services may be discharged through these partners at the discretion of the local authority.

General principles for quality advice provision

6.1.22. As part of its review of its support to existing advice services, the Scottish Government has developed a set of principles for advice services in order to address inequalities across Scotland, treat people with dignity and respect, and deliver services in a holistic way focusing on the individual. Local authorities may wish to draw on these principles during the design and delivery of local information and advice services as required by the Act. The principles are:

• Responsiveness: that people are able to access information and advice at a time and place that fits their needs;
• Integration: that providers of information and advice services work in partnership with other local and national organisations to ensure holistic service provision;
• Professionalism: that people receive high quality information and advice services; and
• Inclusivity: that additional access needs are supported and steps are taken to ensure vulnerable and socially isolated people are reached with the services and support.

6.1.23. Scottish Government supported services are expected to achieve the relevant quality framework accreditation (e.g. Scottish National Standards for Advice and Information Providers). This may be an approach that local authorities wish to replicate to ensure they support high quality service provision.

Scope of information and advice provision

6.1.24. The scope of information and advice provided is at the discretion of the responsible local authority or integration authority (where these functions have been delegated). As a minimum, it must cover the areas set out in Section 34(2):

• carers' rights, including those set out in the carers' charter;
• income maximisation for carers;
• education and training for carers;
• advocacy for carers;
• health and wellbeing (including counselling) for carers;
• bereavement support services for carers following the death of a cared-for person; and
• emergency care planning and future care planning for carers.

Carers' Rights

6.1.25. Section 34(2)(a) requires services to cover carers' rights, including those in the carers' charter. It is important carers are made aware of the carers' charter. This will be prepared and published separately by Scottish Ministers, as required under section 36 of the Act.

Income Maximisation

6.1.26. Section 34(2)(b) requires local authorities to provide information and advice on income maximisation for carers.

Evidence

Research shows that around one third of carers report financial difficulties^[163]. According to the Scottish Index of Multiple Deprivation (which includes income and employment factors) in the 2011 census, 47% of carers in the most deprived areas provide on average 35+ hours a week, compared to just 24% is the least deprived areas^[164]. This indicates a positive correlation between financial security and the amount of care that a carer provides.

6.1.27. Information and advice services may aid the reduction of this inequality and financial stress by facilitating carers to maximise their available income and sustain employment.

6.1.28. Local authorities are encouraged to consider relevant information and advice which helps to prevent or mitigate financial hardship through early financial planning, including assessing the balance between work and care, residential care costs, guardianship for funds.

6.1.29. Providing the appropriate information and advice to carers to support them to sustain employment alongside their caring role, should they wish, is also important in income maximisation.

Example

The Carer Positive^[165] scheme encourages organisations to establish and maintain flexible and carer friendly practices for their employees. This includes employers in the public, private, and third sectors. We would encourage local authorities to consider Carer Positive when developing their information and advice service (and local carer strategy if appropriate).

6.1.30. The devolution of social security powers to Scotland is expected to bring some changes to the benefits carers may be eligible for. The new Scottish social security agency, being created to administer devolved benefits, will provide information to people on their entitlements. This will be accessible through a number of channels including an enhanced digital and phone service and locally, where possible, in places where people already visit, to provide one-to-one claims advice and support when required.

Example

Carers Trust Scotland provides an online benefits calculator^[166] that may be an appropriate first step for carers. Local information and advice sources, including carer centres, other third sector organisations and local authorities will form an important part of provision alongside national sources, such as the Citizen Advice Bureaus and Citizens Advice Direct^[167] of Citizens Advice Scotland^[168].

6.1.31. Local authorities may wish to raise carer awareness of the relevance of total household income to benefits or charges calculations relating to the carer and/or cared-for person, particularly if both the carer and the cared-for person are in the same household.

Education and training for carers

6.1.32. Sections 34(2)(c) requires information and advice on training and education available to carers. This can include both universal opportunities and those that specifically for carers. Consideration of carers' personal outcomes as agreed in their ACSP/YCS will be important to provide appropriate information and advice.

Advocacy for carers

6.1.33. Section 34(2)(d) requires information and advice on advocacy services available to carers. This covers provision of information and advice about available advocacy services. Unlike section 259 of Mental Health (Care and Treatment)(Scotland) Act 2003^[169], this does not require the provision of independent advocacy services themselves.

Evidence

Research by the Joseph Rowntree Foundation states, 'information is what you need or want to know; advice is being guided as to how to go about things; advocacy is a way of acting on that information and advice to get your due^[170]' This connects information, advice and advocacy in a continuum in terms of the services and support a carer might receive.

6.1.34. It is recommended that local authorities and integration authorities consider Scottish Government guidance on carer advocacy^[171]. The Scottish Independent Advocacy Alliance website^[172] provides information on independent advocacy services nationally. Local authorities may wish to consider what local sources of advocacy currently exist and if there are potential gaps in relation to advocacy services for carers.

6.1.35. Local authorities have an separate duty under the Social Care (Self-directed Support) (Scotland) Act 2013 ('SDS Act') to provide assistance on Self-directed Support services to those who would benefit, which could include carers, young carers or cared-for persons where they have an eligible need. There is separate guidance for assistance relating to the SDS Act^[173].

Health and wellbeing

6.1.36. Section 34(2)(e) requires information and advice for carers about their own health and wellbeing. This may take the form of counselling, peer mentoring or other peer support groups, all of which may be of value to a carer and help empower them to manage the emotional impact of a caring role^[174]. Maintaining good physical health can also help a carer build good emotional resilience. The content of an ACSP/YCS may include details of personal outcomes related to the health and wellbeing of the carer which can best be met through this type of support.

Bereavement support

6.1.37. Section 34(2)(f)requires information and advice on bereavement support services for carers in the event of the death of a cared-for person.

6.1.38. If a carer anticipates a need for bereavement support, in advance of the death of a cared-for person, this can be considered as part of the ACSP/YCS process. This may allow for the carer to prepare for that eventuality, and be in a better position to provide care prior to that point.

For Information

There is existing information available about bereavement support services, including but not limited to:

Carers Scotland; which has comprehensive information and advice about coping with bereavement^[175];
Bereavement Zone (NHS Inform, which offers practical advice after a death;
Breathing Space; a free, confidential phone and web based service for people in Scotland;
Cruse Bereavement Care Scotland; a charity providing face-to-face and remote bereavement services nationally;
When someone has died information pack, which is widely used across NHS Scotland to help people through the first few days of a bereavement^[176]; and
What to do after a death in Scotland, the Scottish Government publication which includes the steps that have to be taken following a death^[177].

6.1.39. Some of these services offer specific advice for children or young people, which young carers may find particularly helpful.

6.1.40. A carer may be eligible for a Funeral Payment^[178] or Bereavement Support Payment^[179] following the death of the cared-for person. Local authorities may wish to provide this specific information and support to carers in this position.

Emergency care planning and future care planning

6.1.41. Section 34(2)(g) requires information and advice on emergency care planning and future care planning for carers. This links to the requirements elsewhere in the Act for individual ACSPs and YCSs to contain information about emergency care planning and future care planning (see Part 2 of this guidance) and for local carer strategies to set out plans to help carers put emergency care plans in place (see Part 5 of this guidance).

6.1.42. It would therefore be good practice for services to include information and advice about how and when local authorities will ensure care for the cared-for person during an emergency situation. This may go on to form a part of an emergency care plan that a carer can themselves be supported to create.

6.1.43. Information and advice about future care planning may also be required when a carer wishes to enter employment or education. It would be relevant where a carer is no longer willing or able to carry out a caring role in the same capacity. It may also be relevant where the cared-for person may require an increased amount of care. It may be appropriate for carers to be provided with information and advice about the different legal status' they may have, e.g. power of attorney or guardianship.

Other information and advice – transitions from young carer to adult carer

6.1.44. Specific information and advice may be necessary when a carer transitions from being a young carer to being an adult carer. This transition may involve a change in circumstance and eligibility for support (e.g. children's services) relating to, for example: leaving school; starting further or higher education; starting work; any potential relocation; and other situations. Guidance on the transition from a YCS to an ACSP can be found in Part 2.

Accessibility, proportionality and equalities

6.1.45. Section 34(3) requires information and advice to be accessible to carers. This will include, among other factors, consideration of their:

• digital competence and equipment;
• mobility;
• rurality;
• level of understanding (including any cultural or language barriers); and
• opportunities to access services in light on their caring role.

6.1.46. Section 34(3) also requires information and advice to be proportionate to the needs of the carer. At an individual level, these needs will be stated in the ACSP or YCS and when conducting the conversation, responsible authorities should be flexible when determining any bespoke support needs the individual carer may have.

6.1.47. Section 34(4) requires information and advice services to identify information which is likely to be particularly relevant to people with one or more protected characteristic as set out in section 149(7) of the Equality Act 2010^[180]. These protected characteristics are:

• age;
• disability;
• gender reassignment;
• marriage and civil partnership;
• pregnancy and maternity;
• race;
• religion and belief; and
• sex; and sexual orientation.

6.1.48. A person with one or more protected characteristics may also have specific accessibility needs for information and advice services which deserve consideration. Local authorities may wish to consider the impact of rurality and isolation in particular when designing or procuring their information and advice services.

Chapter 2 – Short breaks services statements

Summary

Section 35requires each local authority to prepare, publish, and review a short breaks services statement.

The duties under section 35 are delegated to integration joint bodies under the Public Bodies (Joint Working) (Prescribed Local Authority Functions etc.) (Scotland) Amendment Regulations 2017^[181] and the Public Bodies (Joint Working) (Prescribed Local Authority Functions etc.) (Scotland) Amendment (No.2) Regulations 2017^[182].

For the purpose of this chapter the terminology 'local authorities' will continue to be used in place of integration joint boards or integration authorities.

Duty to prepare short breaks services statement

6.2.1. Section 35 requires local authorities to prepare and publish a statement setting out information about short breaks services available for local carers and cared-for persons. To provide this information local authorities will need to consider how a break from caring fits within the context of the duty to provide support (set out in Part 3, Chapter 2) and how this information can help empower carers' choices, including the use of Self-directed Support.

Evidence

Research shows that carers can lack the information to access short breaksservices, can feel that they receive insufficient provision to cope with the pressures of caring^[183] or feel that shorts breaks are increasingly being used to respond to crisis situations rather than in a preventative or planned capacity^[184].

Content of statement

6.2.2. Section 35(2) defines a short break services statement as a statement of information about the short breaks services available in Scotland to carers and cared-for persons. This will cover both short breaks services which may be provided as a form of support where a carer's identified needs in an ACSP or YCS meet the local eligibility criteria and also short break services that are available to all (universal services).

6.2.3. Whilst there is no definition of what constitutes a short break, local authorities are encouraged to take a broad view and to consider the paper provided by Shared Care Scotland at Annex C.

6.2.4. Section 35(3) requires information in the statement to be proportionate to the needs of local carers. This is the same requirement as for section 34(3), which is considered in Chapter 1 of this Part.

Preparation, publication and review

6.2.5. Section 35(4) allows Scottish Ministers to make regulations about the preparation, publication and review of short break services statements by local authorities. The Carers (Scotland) Act 2016 (Short Breaks Services Statements) Regulations 2018^[185] have been made under this power.

6.2.6. Local authorities are required to consider the views of relevant carers and carer representatives in the preparation and review of the statement. This is intended to ensure that the statement remains fit for purpose and appropriate to the needs of local carers. It will also help to inform local authorities with future planning and market shaping of short breaks services. Local authorities may also wish to involve short break service providers when preparing the statement.

6.2.7. Each local authority must provide contact details of the department or organisation responsible for the short breaks services statement. This will help ensure carers understand who to approach with enquiries about the short breaks provision available.

6.2.8. Each local authority is to publish their first short breaks services statement by 31 December 2018. This is to allow time to fully consider how best to source and present the information to be contained in their short breaks services statements. This will help ensure good quality statements are produced, providing carers with accurate and up-to-date information they require to build an appropriate package of support in light of changes resulting from the commencement of the Act.

6.2.9. It is the responsibility of each local authority to review and update its short breaks services statement as and when required, whilst giving regard to changes such as new short breaks services becoming available locally or nationally; or short breaks services that are no longer available.

6.2.10. It is recommended that short breaks services statements have an emphasis on local provision, as well as including relevant information about provision which may be available outwith the local authority area. Local authorities can provide support towards, and signpost carers to appropriate services from a variety of sources (universal, specialist, local authority operated, third sector etc.) This could include, for example, community cafes offering the carer an opportunity to socialise and relax on a regular basis, or a national residential service supporting people with long-term conditions or complex needs and their carers.

6.2.11. Local authorities are encouraged to include relevant statistics on local provision as part of the statement. This could include, for example, total local provision of short breaks broken down into different categories of service provision, or the number of carers supported by a particular service. This will help carers better understand the local short breaks landscape, and enable local authorities to consider any gaps in service provision, and in planning for future local demand of short breaks.

6.2.12. Some carers have made it clear that it would be useful for short breaks services statements to contain information about any criteria that needs to be met in order to access short breaks services. This would enable carers to have exercise more choice and control. Local authorities are encouraged to consider this as part of their preparation and content.

6.2.13. Local authorities are encouraged to use the statement as a way of sharing information and good practice in order to meet the needs of local carers and to plan for future demand. This is important where, for example, short breaks provision in a neighbouring local authority would meet the eligible needs of the carer.

For Information

There are also several national directories for information relating to short break services provided, which may be useful for identifying the sufficiency of local markets as well as for signposting purposes, including:

Short Break Services Directory^[186] – a national directory of short break providers catering for different care needs and conditions (Shared Care Scotland);

Short Breaks Funding Directory^[187] – a directory of national and local sources of funds that individuals can apply to help with a short break (Shared Care Scotland);

Euan's Guide^[188] – a national disabled access guide;

ALISS (A Local Information Service for Scotland)^[189] – links to a range of local community supports that can support health and wellbeing;

Short Break Stories^[190]– examples of voluntary sector Short Break provision in Scotland (Shared Care Scotland);

Autism Society Directory^[191];

Care Inspectorate^[192] – a directory of care services that are registered with and inspected by the Care Inspectorate; and

OSCR^[193] – the Scottish Charity regulator who can provide a list of all charities registered in Scotland.

6.2.14. The principles of Self-directed Support (choice, control, flexibility, outcomes) apply to the provision of short breaks. Implications of the Social Care (Self-directed Support) (Scotland) Act 2013 for carers are set out in the Self-directed Support: a guide for carers guidance^[194] and in Part 3 of this guidance.

Approaches to preparation

6.2.15. There are a number of different approaches used across the UK to disseminate information on short breaks that local authorities may wish to consider when preparing their own short breaks statements, some are described below.

6.2.16. Some Scottish local authorities have produced similar documents alongside referencing short break services in usual reporting documents. As an example, Midlothian Council produced a short breaks services statement that stated the context and approach of the council to short breaks^[195].

6.2.17. The different legal requirements and circumstances in England require English local authorities to meet certain criteria for their statements in order to meet the needs of families with disabled children^[196].

6.2.18. Shared Care Scotland has established a time-limited action learning project in 2017-18, involving local authority and integration authority representatives to help develop good quality short breaks services statements. Local authorities are encouraged to consider the outcomes from this project as they emerge.

For Information

Enfield Council publishes a good example of a short breaks statement for families with disabled children^[197]. Supporting documents from Enfield council, rather than the statement itself, provide the specific detail of local short break options that would be expected of Scottish local authorities.

Kent County Council also publishes a good short breaks statement for parents and carers of disabled children and young people^[198]. It includes useful case studies of the different forms short breaks can take to meet individual needs, and whether these are universal, targeted, or specialist support services.

Format

6.2.19. It is for local authorities to determine who prepares the short break statement. The format and exact content of the statement will be for local authorities to decide, as long as it meets the requirements set out in regulations. The short breaks services statement is to be a useable product for carers forming part of the information and advice service provided to them, and empowering them to take their own decisions regarding the support they need.

6.2.20. Local authorities may want to consider whether their short breaks services statement is prepared as a single piece that is relevant to both adult carers and young carers, or if separate and distinct publications are produced to meet local needs.

6.2.21. Section 35(3) requires the statement to be in a readily accessible format. A recommended approach for the short breaks services statement is to publish the statement online in an easily searchable location alongside supplementary locations (e.g. physical copies in GP surgeries, carer centres, community centres, youth projects, schools and colleges).