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Carers (Scotland) Act 2016: statutory guidance

Statutory guidance to accompany the Carers (Scotland) Act 2016.

150 page PDF

1.2 MB

150 page PDF

1.2 MB

Contents
Carers (Scotland) Act 2016: statutory guidance
Part 2, Chapter 1

150 page PDF

1.2 MB

Part 2, Chapter 1

Adult carer support plans

Summary

Part 2, Chapter 1 of the Act covers adult carer support plans.

Section 6 sets out the duty to prepare an adult carer support plan.

Section 7 deals with adult carers of terminally ill cared-for persons.

Section 8 deals with the identification of outcomes and needs for support of adult carers.

Section 9 sets out the minimum information that an adult carer support plan must contain.

Section 10 deals with the review of adult carer support plans.

Section 11 addresses the provision of information to the carer about their adult carer support plan.

The duty under section 6 is delegated to integration joint boards under the Public Bodies (Joint Working) (Prescribed Local Authority Functions Etc.) (Scotland) Amendment (No. 2) Regulations 2017 [10] .

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

Purpose of adult carer support plan

2.1.1. The adult carer support plan ( ACSP) provides a framework for identification of personal outcomes and individual needs for support of adult carers. This then links to the duty and power of the responsible local authority to provide substantive support to meet those identified needs. These duties and powers are considered in Part 3 of this guidance.

2.1.2. The ACSP is intended to help to increase the numbers of carers identified and having their needs properly considered (when compared to the numbers previously receiving a carers assessment).

Duty to prepare adult carer support plan

2.1.3. Section 6 requires a responsible local authority to offer an ACSP in respect of an identified adult carer and to prepare one if that offer is accepted. The duty to prepare an ACSP also applies where an adult carer has requested one.

2.1.4. The duties to offer and prepare an ACSP still apply, even if the carer’s identified needs do not meet local eligibility criteria. In these circumstances, the ACSP can include signposting and access to any relevant supports, for example, universal or community-based services.

2.1.5. Section 6(1)(a) to (c) requires an ACSP to set out:

  • an adult carer’s identified personal outcomes;
  • an adult carer’s identified needs (if any); and
  • the support (if any) to be provided by the responsible local authority to an adult carer to meet those needs.

2.1.6. Further guidance on each of these elements is set out below.

2.1.7. The ACSP is therefore the mechanism through which needs for support are monitored and support is managed.

Responsible Local Authority

2.1.8. As at section 6(6) the ‘responsible local authority’ in relation to an ACSP, means the local authority for the area in which the cared-for person resides [11] .

Approach to adult carer support plans

Third sector role

2.1.9. Responsible local authorities are encouraged to work collaboratively with the third sector in developing their models for preparing ACSPs. It is up to the responsible local authority to decide whether it wishes to commission third sector partners to undertake the function of preparing individual ACSPs.

Learning from ACSP pilots
During the pilots for this aspect of implementation of the Act, one Health and Social Care Partnership found that developing their adult carer support plan collaboratively with their local carer centre ensured that an outcomes focused perspective was taken by both partners.

This also allowed both the carer centre and the Health and Social Care Partnership to test out some of the draft adult carer support plans with carers.

Not all carers required a service following on from having an ACSP, but they valued the experience of being involved and having their voices heard on the issues they face including emergency planning.

Information for carers about ACSPs

2.1.10. Carers will need to know what to expect when they request or accept the offer of an ACSP. It is recommended that this information be jargon free, published and provided through carer information and advice services as part of the ACSP offer. This could take the form of a leaflet that is freely available both online and in printed format. Further information about the duties to provide information and advice is set out in Part 6 of this guidance.

Equal opportunity requirements

2.1.11. Section 6(5) requires the responsible local authority to exercise its functions when preparing an ACSP in a manner which encourages equal opportunities, in particular the observance of the equal opportunity requirements (within the meaning of section L2 of Part 2 of schedule 5 of the Scotland Act 1998) [12] .

Online approaches

2.1.12. Responsible local authorities covering remote rural areas may wish to consider the option of an ACSP being undertaken through an online platform such as a video call. It is recommended that if this option is pursued, its development would benefit from the involvement of carers and carer representatives from local carer support organisations. It is recommended that responsible local authorities have an option to undertake an ACSP in person for those carers who are uncomfortable with or unable to access the online alternative.

Self-evaluation approaches

2.1.13. Responsible local authorities may also wish to consider providing for a self-evaluation approach through which carers identify their own needs if they are willing and able to do so. Carers can provide certain aspects of the information required for the ACSP. It would still require the responsible local authority to check the completed self-evaluation with the carer; ensure all required information has been considered and recorded; and make decisions about carer support, based on the carer’s identified needs and personal outcomes. It is therefore strongly recommended that there is always a conversation, preferably in person with the carer as part of the process in order to allow information to be checked and so that it can be determined to what extent the carer’s identified needs meet the local eligibility criteria.

2.1.14. It is recommended that the responsible local authority follows the same outcomes focused approach to the preparation and formation of an ACSP using good conversations to aid the process regardless of whether the carer undertakes a self-evaluation or not.

2.1.15. Before offering a self-evaluation, the responsible local authority can take steps to try to determine that a carer has the ability to fully assess and reflect their own needs. Where responsible local authorities have concerns that a carer may experience substantial difficulty in understanding, retaining and using the relevant information in relation to their self-evaluation, they could offer support and advice. It may be worth considering using an independent advocate or another member of the carer’s family or support network to assist the carer with their self-evaluation.

Outcomes-focused approach

2.1.16. It is recommended that responsible local authorities take account of the national outcomes for Integration and in particular, National Outcome 6, which states ‘People who provide unpaid care are supported to look after their own health and wellbeing, including to reduce any negative impact of their caring role on their own health and wellbeing’.

2.1.17. There are several useful practice approaches for responsible local authorities to make use of when undertaking an ACSP. These include using a conversational approach, an outcomes approach and an assets based approach to assessment. There are several models of assessment but the exchange model is particularly well suited to an outcomes focused approach.

2.1.18. A conversational approach to assessment such as the exchange model [13] could be considered by responsible local authorities when undertaking an ACSP. In this context, the approach involves practitioners and carers working together to develop outcomes into individual stories and coproduce their collaborative plans.

2.1.19. An outcomes approach [14] supports the exchange model where the carer’s strengths and aspirations are fundamental, and it supports a process of negotiation involving the knowledge and skills of each participant. This aligns well with an assets based approach to wellbeing, whereby the focus is on what the carer wants to change in their life and the resources and strengths they bring to realise the intended changes. The Talking Points personal outcomes approach [15] is a valuable evidence-based framework that summarises the outcomes important to adults and carers living in the community who use health and social care services.

Proportionate approach

2.1.20. When preparing the ACSP, the responsible local authority is recommended to take a proportionate approach, taking into account what issues are raised through the conversation with the carer and which issues need to be raised with the carer.

2.1.21. In carrying out a proportionate approach to an ACSP, authorities will have regard to the carer’s wishes, preferences, identified needs and personal outcomes. For example, a carer may be quite specific about the areas of their life where their caring role has an impact. They may not feel the need to discuss other areas, which they feel are not relevant to them, and where their caring role has no impact.

Example
John looks after his adult daughter who has a learning disability. His wife used to be the primary carer, but since her death John’s caring role has increased. John is currently in employment and is finding it difficult to balance work with his caring responsibilities.

John’s identified needs and personal outcomes are focused on enabling him to continue in employment. John is clear that he is coping well in other areas of his life. He has good health and wellbeing and is able to maintain relationships and have a life alongside caring.

Example
Liliana is 50 and is the carer for her son, who has a long term, degenerative health condition. She has a good support network of family and friends and is coping well across the board. However, she does worry about how she will cope as she grows older and her son’s condition worsens.

Liliana’s identified needs and personal outcomes are focused on future care planning and this is the main aspect she wants to discuss in her ACSP.

Low and Fluctuating Need

2.1.22. It is recommended that responsible local authorities consider the potential fluctuation of the carer and/or the cared-for person’s needs. For example where the responsible local authority is aware that the cared-for person’s needs fluctuate over time due to a mental health condition, the ACSP carried out at a particular moment may take into account the cared-for person’s history to establish a complete picture of the cared-for person’s needs and the impact these fluctuating needs have on the caring situation.

2.1.23. It is recommended that low level needs and the support to meet those needs are considered as part of the ACSP process. This process will be based on the identification of personal outcomes, needs and risks. It would be worth considering whether a carer’s identified needs can be met by the local information and advice service or general services in the community.

Signposting to universal support where carer refuses an ACSP

2.1.24. Not all adult carers will want to accept the offer of an ACSP. In these cases the responsible local authority may consider signposting the carer to a carer centre or similar support provider.

Learning from ACSP Pilots
During the pilots for this aspect of implementation of the Act, a Health and Social Care Partnership took a coproduction approach to developing their ACSP. This found that:

  • it made sense to allow carers to have access to universal supports without having to undertake an ACSP;
  • more information and communication was required to allow carers to know what is available in their area and what choices they can make; and
  • any forms used need to be as simple, accessible and as user friendly as possible.

Tensions between carer and cared-for person

2.1.25. There may be tensions between the carer and the cared-for person. Carers can often find their caring role stressful and difficult in a range of different ways. The cared-for person may not be coping well with their condition or a deterioration of their health. This can put tremendous strain on the relationship between the carer and the person that they care for. Responsible local authorities need to take account of this and be sensitive to it when undertaking an ACSP. The authority could consider working with both parties to try and seek a resolution to the situation if possible. In some circumstances, that could involve supporting the carer to end their caring role. In situations where the caring situation has become completely unmanageable or has a harmful impact on the carer’s wellbeing or that of the cared-for person, it may be necessary to raise an adult protection [16] concern in line with their local multi-agency adult protection guidelines.

Content of adult carer support plan

2.1.26. Section 9 outlines what information must be contained in an ACSP.

Carer’s personal circumstances

2.1.27. Section 9(1)(a) requires information about the carer’s personal circumstances when the ACSP is being undertaken. This must include information about the nature and extent of care provided or to be provided by the carer and information about the impact of caring on the adult carer’s wellbeing and day-to-day life.

2.1.28. In practice, a good conversational approach would be important to determine a picture of the types of care and the intensity of the care being provided by the carer. This might include, for example, emotional support and practical care such as assistance with toileting and bathing.

2.1.29. The responsible local authority will also need to understand the impact on the carer from undertaking their caring role. This would include the impact on the carer’s wellbeing and ability to have a life of their own. Negative impacts could include high levels of emotional distress, regular physical strain and acute social isolation.

2.1.30. When undertaking the ACSP, the responsible local authority must also consider the carer’s daily activities and dependents beyond their caring responsibilities, and the impact of caring upon these activities. This includes considering the impact of caring duties on a carer’s desire and ability to undertake paid work, to participate in education, training or recreational activities, such as having time to themselves. It is recommended that authorities consider both short-term and longer term cumulative impacts of caring responsibilities.

Able and willing to provide care

2.1.31. Section 9(1)(b) requires information about the extent to which the adult carer is able and willing to provide care for the cared-for person. It is recommended not to make any assumptions about a carer’s willingness or ability to care. For example, the carer may indicate that they are willing and able to care in order to facilitate the discharge of the cared-for person from hospital, while in reality they are unable to sustain the caring role in the community without adequate support. This is partly due to the anxiety that many carers have that a statutory involvement may lead to a loss of influence over the care of the cared-for person.

2.1.32. Ability and willingness to care can be closely linked to a carer’s opportunities to have some time away from caring and to recover. A break from caring can help the carer to recharge and continue in their caring role. There is therefore a link between this aspect of the ACSP and the support provided to meet the carer’s needs (as considered in Part 3 of this guidance). Some carers may not be able to sustain the caring role even with support in the form of breaks from caring. There could be many reasons for this, including mental exhaustion or physical deterioration. In these circumstances, it may be more appropriate to explore home care and other increased support at home or, where required, longer term alternative options for accommodation-based care for the cared-for person. See also the discussion of ability and willingness to care in Chapter 3 of Part 3.

2.1.33. The willingness and ability of the carer to continue to provide care to a cared-for person may be closely linked to the support provided to the cared-for person following other assessments. It is therefore recommended that the responsible local authority takes into account the outcomes of any prior assessment in relation to the cared-for person and consider whether a new assessment is required. This may help to establish whether the carer is able and willing to continue to provide care to the cared-for person. The Act also requires the ACSP to be taken into account when carrying out assessments under other legislation, as considered below.

Link to assessment of cared-for person’s needs and outcomes

2.1.34. Section 30 of the Act amends section 12A of the Social Work (Scotland) Act 1968, which sets out the duty of local authorities to assess needs in relation to social care. The effect of the amendments is to require the local authority to take account of the care provided by the carer as set out in the ACSP when making decisions about the provision of support to meet the cared-for person’s needs and outcomes. The local authority is also required to take account of the views of the carer in determining an adult’s needs and outcomes for support, so far as it is reasonable and practicable to do so. Normally therefore, the carer’s views would be taken into account, unless there are particular circumstances which prevent this from happening.

2.1.35. Section 30 of the Act makes similar amendments to section 23 of the Children (Scotland) Act 1995, which sets out the duty of the local authority to assess the needs of children affected by disability. The effect of the amendments is to require the local authority to take account of the care provided by the carer as set out in the ACSP when making decisions about the provision of support to meet the needs and outcomes of the cared-for child. The local authority is also required to take account of the views of the carer in determining a child’s needs and outcomes for support so far as it is reasonable and practicable to do so.

2.1.36. A responsible local authority may consider preparing an ACSP at the same time it undertakes an assessment of needs and outcomes of the supported person/ child.

Emergency care plans for cared–for persons

2.1.37. Section 9(1)(c) requires information about whether the adult carer has arrangements in place for the care of the cared-for person in an emergency.

2.1.38. Emergency planning (sometimes called contingency planning) includes planning for events such as the carer not being able to care due to illness or adverse weather preventing the carer from accompanying the cared-for person to medical appointments.

2.1.39. Some responsible local authorities already offer carers emergency plans or discuss emergency planning with them, whilst other areas offer carers an emergency card which lets the emergency services or social care services know that a person is a carer. Encouraging carers to carry the card at all times can help services to put other support in place in a crisis.

2.1.40. ENABLE Scotland has a suite of resources about emergency planning which applies in all caring situations, including caring for children and adults with learning disabilities [17] . Responsible local authorities are encouraged to make use of these resources or direct adult carers to the ENABLE emergency planning resources.

Learning from ACSP pilots
During the pilots for this aspect of implementation of the Act, a Health and Social Care Partnership introduced the ENABLE emergency planning toolkit through a conversation with the carer as part of preparing the ACSP. They found this helped to establish what would be required to be done in an emergency situation. There was very positive feedback from carers about the introduction of emergency planning as part of their ACSP.

Future care plans for cared-for persons

2.1.41. Section 9(1)(d) requires the ACSP to include information about whether the adult carer has arrangements in place for the future care of the person that they care for. If the carer identifies future care planning through discussion on their personal outcomes or identified needs as part of the ACSP process, they could be provided with support to put such plans in place.

2.1.42. Where carers appear to have a significant need for support with future care planning, this would be considered as part of the ACSP and the identification of needs; and if this identified need meets local eligibility criteria, the responsible local authority will be under the duty to provide support (see separate guidance chapter on duty to provide support to carers).

2.1.43. Information and advice services for carers are covered in Part 6 of this guidance. These services can signpost to or be designed in partnership between a carer centre and specialist, professional, independent services to offer future planning services. Such services could include making wills, trusts and longer term financial planning if appropriate to an adult carer’s situation. Responsible local authorities may also consider the provision of carer advocacy services and make reference to the Scottish Government’s guidance on carer advocacy in Scotland [18] .

Example – Information and advice on future care planning
VOCAL, Edinburgh offers free surgeries to carers to access future planning services. Working in partnership with a solicitor, VOCAL offers carers short consultations, for information and advice about key issues such as wills, trusts and guardianship. They also offer long term care financial advice surgeries via a chartered financial advisor who explores options with carers who are concerned about paying for care home fees and other financial issues.

Link to anticipatory care planning

2.1.44. In terms of future care arrangements, the ACSP is well placed to link to an anticipatory care plan [19] This is a dynamic record that can be developed over time through an evolving conversation, collaborative interactions and shared decision making. It is a summary of the discussions between the cared-for person, their carer and the practitioner. Carers themselves may find it useful to have their own anticipatory care plan which can be kept updated and shared using technology such as the associated app [20] .

2.1.45. Anticipatory care planning is more commonly applied to support those living with a long term condition to plan for an expected change in health or social status. It also incorporates health improvement and staying well. Completion of a common document called an anticipatory care plan is suggested for both long term conditions and in palliative care. Future care arrangements will also be relevant when the cared–for person is receiving end of life care. Advance care planning is the term most commonly referred to in end of life care, although it does incorporate the writing of wills or ‘Living Wills’ now known as advance directives or advance decisions which can be done by the cared-for person early on in life to plan for what may happen at the end of life.

Personal outcomes

2.1.46. It is recognised that caring for another person is likely to impact on a carer physically, emotionally and on the way in which that carer lives his/her day to day life. The policy intention of the Act is to maximise opportunities and minimise negative impacts so as to allow the carer to have a life alongside caring. Consequently, the ACSP seeks to support carers not just in relation to the substantive care that they provide to the cared-for person, but also by putting measures in place that will help a carer to live their own life and to achieve their own goals and aspirations. These day to day goals and longer term aspirations are to be documented within the ACSP as the carer’s ‘personal outcomes’.

2.1.47. Section 9(1)(e) requires the ACSP to contain information about the identification of the adult carer’s personal outcomes and what those outcomes are.

Definition and approach to identifying personal outcomes

2.1.48. The term ‘personal outcomes’ is defined at section 4 of the Act. It includes outcomes, which if achieved would enable carers to provide or continue to provide care for the cared-for person(s).

2.1.49. Section 4(2) allows Scottish Ministers to make further provision in regulations about personal outcomes. No such regulations have been made.

2.1.50. The Carers (Scotland) Act 2016 (Adult Carers and Young Carers: Identification of Outcomes and Needs for Support) Regulations 2018 require personal outcomes and needs for support to be identified following a conversation with the adult carer. Such conversations can take a variety of forms, for example in the case of carers with communication difficulties. The regulations also state that, like the preparation of ACSPs, identification of personal outcomes and need for support is a function of the responsible local authority. This does not preclude the responsible local authority arranging for another body, such as a local carer support organisation, to do the work on its behalf. The regulations also require an adult carer’s personal outcomes and needs for support to be reviewed when his or her ACSP is reviewed.

Evidence on personal outcomes
The review paper Review of evidence on personal outcomes relevant to the Carers (Scotland) Act 2016, Emma Miller (2017), University of Strathclyde [21] is a valuable source of information on domestic and international practice in the literature to evaluate personal outcomes; their use, efficacy and integration with existing processes and procedures.

2.1.51. In terms of approach to identification of the adult carer’s personal outcomes, the discussion can be focused on the adult carer’s wellbeing needs, and consider how coordinated services or support can impact on their wellbeing. The outcomes must be specific to the carer and their circumstances and may have a short or longer term focus as required.

Consideration of equalities when identifying outcomes

2.1.52. Section 8(2) requires that in identifying an adult carer’s personal outcomes and needs for support, the responsible local authority must take into account any impact that having one or more protected characteristics (within the meaning of section 149(7) of the Equality Act 2010) has on the adult carer [22] .

Equalities Examples
Sensory loss & deafblindness
Where an adult carer has dual sensory loss or is deafblind, responsible local authorities could have an appropriately skilled professional involved in the ACSP or consider a specialist assessment undertaken by a professional with dedicated skills in understanding the impact that deafblindness or dual sensory loss can have on an individual person and their family.
English not a first language
When planning to undertake an ACSP, it is identified that English is not the carer’s first language. In this situation, it is recommended that the responsible local authority would offer an interpreting and translation service when undertaking the preparation of the ACSP.
Older carers
Older carers may have to manage their own long-term conditions and frailty which may impact considerably on their ability to provide care. Other factors to consider are whether or not the carer also requires their own social care needs assessment alongside their ACSP and to the level at which they may reach eligibility for support as undertaking a smaller caring role may have a much greater impact on an older carer than other carers.
Carers with a learning disability
In the case of adult carers who have a learning disability, responsible local authorities may consider who is best placed to undertake the ACSP. The carer may have barriers to participate in their ACSP. Consideration of the use of an independent advocate alongside the carer may help the carer to express their views and opinions on what their needs and personal outcomes are.

Identified needs

2.1.53. Section 9(1)(f) requires the ACSP to contain information about the identification of the carer’s needs for support, including what these needs are. ‘Identified needs’ are defined in section 5 of the Act as the needs for support which are identified in order to meet the carer’s identified personal outcomes. These support needs could include a broad range including the carer’s physical needs, emotional needs, relationship needs, health needs, economic needs and physical environment needs. Identified needs must be recorded in the ACSP. If a carer has no identified needs for support, this must also be recorded.

2.1.54. In considering what the carer needs to meet their personal outcomes, responsible local authorities are recommended to consider the carer’s strengths and capabilities, and what support might be available from their wider support network or within the community. Suggestions that support could be available from other family and friends could be considered in light of their willingness and ability to provide any additional support and the impact on them of doing so.

Whole family approach

2.1.55. Consideration of what other support may be available through the carer’s networks and the wider community, allows for a whole family approach and for the responsible local authority to build a more holistic view of the needs of the carer and the person they care for.

2.1.56. In considering the impact of the cared-for person’s needs on those around them, the responsible local authority may consider whether additional information and advice would be beneficial to those people identified. Alongside the main carer there may be others undertaking a caring role. For example where a carer has children, one of whom has additional care needs, there may be other children who are young carers, which allows the offer of a young carer statement to be made.

Support available locally

2.1.57. Section 9(1)(g) requires information about the support available to adult carers and cared-for persons in the responsible local authority’s area to be contained in the ACSP. It is recommended that this information is tailored to the specific identified personal outcomes and needs of the adult carer and the person that they care for.

2.1.58. This information may for example, take the format of a leaflet or a carer information pack. We recommend it includes contact details of the information and advice service or carer centre and instructions on relevant online information. It could include information on universal support in the area or more intensive support such as respite which would be outlined in the short break services statement.

Carers living in other areas from the cared-for person

2.1.59. Section 9(1)(h) requires that if an adult carer does not reside in the responsible local authority’s area, information must be provided about the support available to them, in the area where they live. The ‘responsible local authority’ in relation to an adult carer, means the local authority for the area in which the cared-for person resides.

2.1.60. In these circumstances, it is recommended that the responsible local authority, liaises with the local authority where the carer lives so that the responsible local authority can provide appropriate information about the support available locally.

Adult carers caring for people in more than one local authority area

2.1.61. There may be occasions where an adult carer is caring for more than one person across different local authority areas. In these circumstances, both local authorities where the cared-for persons are living have responsibility to offer and if that offer is accepted undertake an ACSP. Following that, they would provide support to the carer (dependent on the two local authorities’ potentially different eligibility criteria) which might involve providing support to the cared-for person.

2.1.62. We encourage each local authority in these circumstances to work together, so that they can jointly:
a) achieve an outcomes focus for the individual carer;
b) minimise the need for the carer to provide the same information twice;
c) make decisions on support and eligibility based on a shared understanding of the total impact of the carer’s caring responsibilities; and
d) avoid duplication of effort.

2.1.63. Whilst each local authority’s eligibility criteria would be relevant in its own decision making about support, we recommend collaboration between each area in that decision making process.

Case Study – Carer caring for two people in different areas
An adult carer is caring for their daughter, a child who has a long term condition, whilst also providing care to their elderly mother, in her seventies with dementia. The carer and her daughter both live in Dundee (the same local authority) but the grandmother (second person being cared-for) lives in Perth and Kinross (another local authority).

The ‘responsible local authority’ in relation to an adult carer, means the local authority for the area in which the cared-for person resides. The responsible local authority would therefore be Dundee for the first caring situation and Perth and Kinross for the second caring situation.

Therefore the duty to undertake the ACSP and provide support if the carer’s identified needs meet the local eligibility criteria for the Dundee caring situation would sit with Dundee as the responsible local authority. For the other caring situation, it would be Perth and Kinross as the responsible local authority.

However, Dundee as the responsible local authority who have identified a carer in their area who also cares for someone who resides in a different local authority area (Perth and Kinross), could liaise with that local authority and make a referral (with consent) to ensure that the carer has access to an ACSP and any requisite support that would benefit them and to which they are entitled.

Carer who resides in Scotland caring for someone outwith Scotland

2.1.64. The Carers (Scotland) Act 2016 does not create a duty to offer an ACSP to a carer in this situation, or provide subsequent support as the cared-for person resides outwith Scotland. However, carers are still able to access local carer support such as: carer centre services; Citizens Advice Bureau; advice shops and local authorities’ information and advice services.

2.1.65. A carer living in Scotland who cares for someone outwith Scotland may be eligible for support from the local authority in which the cared-for person resides. In these instances, it would be a matter for the relevant local authority in England or Wales, or the Health and Social Care ( HSC) Trust in Northern Ireland to make decisions as set out under legislation in those countries. (See Part 3, Chapter 2 on duty to provide support).

Carer resides outwith Scotland, caring for someone in Scotland

2.1.66. Instances where a carer outwith Scotland is caring for someone residing in Scotland may also occur. For example, a ‘distance caring’ relationship where a carer looks after:
a) a frail parent and provides emotional support, liaises with statutory services, and arranges other help from a distance, and visits regularly to provide hands-on assistance; or
b) someone nearby, just over the border.

2.1.67. For adult carers, the Scottish local authority where the cared-for person lives has a duty to offer an adult carer support plan and to support the carer under the Act where their identified needs meet local eligibility criteria.

Support to be provided

2.1.68. Once the responsible local authority is satisfied that the ACSP has accurately captured the carers identified needs, the authority must come to a view on the carer’s eligibility for support. This process is detailed in Part 3 of this guidance.

2.1.69. Although the responsible local authority and the carer are working jointly to ascertain needs and eligibility, the final decision regarding eligibility will rest with the responsible local authority. In all cases, the responsible local authority must inform the carer of their eligibility judgement and why it has reached the eligibility determination that it has. Where a carer is identified as having eligible needs for support, it must discuss what these eligible needs are and outline how these might be met including via the four options of self-directed support (Please refer to guidance on local eligibility criteria and duty to support carers).

2.1.70. Section 9(1)(i) requires the ACSP to provide information about the support which the responsible local authority provides or intends to provide to the adult carer to meet their identified needs if those needs meet the local eligibility criteria.

2.1.71. At this support planning stage, if the carer’s identified needs meet the threshold of the local eligibility criteria, the responsible local authority must offer the four options (see Table 2 below) of self-directed support [23] to the carer based on their indicative budget or relevant amount.

The four options of Self-directed Support are:
Option 1: a Direct Payment (a cash payment);
Option 2: funding allocated to a provider of your choice (sometimes called an individual service fund, where the council holds the budget but the person is in charge of how it is spent);
Option 3: the local authority can arrange a service for you; or
Option 4: you can choose a mix of these options for different types of support.

2.1.72. There is no single approach to resource allocation prescribed on the face of the Social Care (Self-directed Support) (Scotland) Act 2013, nor any single method recommended by the Scottish Government. The authority may wish to adopt an equivalence model where they determine the cost of the service to be arranged and then provide the equivalent amount as a budget for the supported person or carer to control. Alternatively, it may wish to adopt a resource allocation system whereby the authority gathers information about the person’s outcomes; allocates points to those outcomes; and then allocates a level of funding. In addition, decisions about budgets may be made on a case by case basis. It is recommended to make reference to the statutory guidance to accompany the Social Care (Self-directed Support) (Scotland) Act 2013 [24] .

2.1.73. If all parties agree, the responsible local authority may decide to offer one holistic budget that extends to meet both the eligible needs and personal outcomes of the adult carer and the eligible needs and personal outcomes of the cared-for person. If budgets are combined, it is important that the focus is not just on the cared-for person but also acknowledges the carer’s health and wellbeing. Carers also require choices and their support personalised.

Preventative approach whether or not needs meet eligibility criteria

2.1.74. Section 9(1)(j) requires that where the adult carer’s identified needs do not meet the local eligibility criteria, information about any support which the responsible local authority nevertheless agrees to provide must be included in the ACSP. Responsible local authorities can choose to provide individualised support to the carer on a discretionary basis using their powers rather than duties to provide support. This could include making a referral or signposting carers to universal or community based services, for example a local carers centre or a citizens advice service.

2.1.75. If the carer’s needs do not meet the local eligibility criteria, then it is recommended that other preventative supports in the community still be considered by the responsible local authority. This for example may include advice and information, emotional support, befriending or a welfare benefits check to maximise family income.

Example
Carer centres can offer a wide range of preventative support to carers including advice and information, emotional support, carer training, short breaks and welfare benefits checks to maximise income. Carer centres are often third sector organisations who specialise in carer support.

Breaks from caring

2.1.76. Section 9(1)(k) requires the ACSP to include information about whether the support should include breaks from caring. Part 3 of this guidance contains more information about breaks from caring .

Review of ACSP

2.1.77. Section (9)(1)(l) requires the ACSP to contain information about the circumstances in which it is to be reviewed.

2.1.78. The Carers (Scotland) Act 2016 (Review of Adult Carer Support Plan and Young Carer Statement) Regulations 2018 [25] specify circumstances in which ACSPs must be reviewed by the responsible local authority. These are:
a) when the adult carer moves to reside in a different local authority area;
b) when the cared-for person becomes resident in accommodation provided under:
i. Part 2 of the Social Work (Scotland) 1968 Act; or
ii. Section 25 of the Mental Health (Care and Treatment) (Scotland) Act 2003; or
iii. Part 2 of the Children (Scotland) Act 1995 or
c) any other change in the adult carer or cared-for person’s circumstances which the responsible local authority views as having a material impact on the care provided by the adult carer.

2.1.79. The Regulations highlight that a review of the ACSP may be appropriate where support to the cared-for person has changed. It is for the responsible local authority to decide in each individual situation whether this change in circumstance warrants a review.

2.1.80. Responsible local authorities must also consider what other circumstances will be relevant to trigger a review in individual cases. These may include:
a) after an agreed period of time, e.g. one year;
b) deterioration in the health of the adult carer or cared-for person; and
c) the cared-for person being discharged from hospital.

2.1.81. Responsible local authorities are encouraged to seek the views of the relevant adult carer when identifying whether any other change in circumstance has had a material impact on the care provided by the adult carer.

2.1.82. It would be expected that the review process would be proportionate to the situation. A review will keep the information contained in the ACSP up to date and relevant and would always look at whether the needs for support and personal outcomes of the adult carer have changed. This may result in a change in the adult carer’s eligible needs.

Effectiveness of support provided under previous ACSP

2.1.83. After an initial ACSP has been prepared, Section 9(2) requires each subsequent ACSP to contain information about the extent to which any support provided under a previous plan has assisted in the achievement of the adult carer’s identified personal outcomes.

Additional information

2.1.84. The responsible local authority can decide what additional content to include in the ACSP, over and above the minimum requirements set out in the legislation. This could be information tailored to individual ACSPs or general information. An example could be a risk assessment in relation to tasks undertaken by the carer such as bathing the person that they care for or assistance with mobility.

Timescales for preparing an adult carer support plan

2.1.85. There are no timescales set out in the Act for preparing and completing individual adult carer support plans and young carer statements. There will be timescales prescribed in relation to carers of terminally-ill cared-for persons, as outlined below.

2.1.86. Section 31(2)(h) requires the local carer strategy to set out the intended timescales for preparing adult carer support plans and young carer statements. Part 5 of this guidance deals with local carer strategies. The intention of section 31(2)(h) is to give carers collectively an indication of how long, on average, they are likely wait for an adult carer support plan. It is fully expected that some will take less time and some will take longer than those indicated time periods for valid reasons

2.1.87. There may be different timescales for completion of individual adult carer support plans. ACSPs ought to be prepared within reasonable timescales taking into account the urgency of needs for support and any fluctuation in those needs. Responsible local authorities may have guidance for timescales based on urgency or risk. There may be valid reasons for a plan taking longer to complete than perhaps anticipated, for example, where the carer’s needs are complex and require more than one contact to prepare and complete the plan and/or where support required is specialised and not readily available. Responsible local authorities are encouraged to focus on achieving the right outcomes for the carer rather than allowing set timescales to become a de facto target or input measure.

2.1.88. Responsible local authorities are advised to inform the individual carer of an indicative timescale over which their assessment will be conducted and keep the carer informed throughout the assessment process. Some responsible local authorities also, as a matter of good practice and courtesy, advise individual carers of any delays and the reasons for the delays.

Timescales for ACSPs for carers of terminally ill cared-for persons

2.1.89. Section 7 requires Scottish Ministers to prescribe timescales in regulations for the preparation of the ACSP in relation to adult carers who are caring for someone who is terminally ill. Research is currently underway to consider what timescales would be appropriate. Regulations will be brought forward in due course once that research is complete and this guidance will be updated accordingly.

2.1.90. The term, ‘terminally ill cared-for person’ for the purposes of this section and section 13 of the Act is a person who is terminally ill due to suffering from a progressive disease and death as a consequence of that disease can be reasonably expected within six months.

2.1.91. Section 9(3) provides a power to make regulations about other information which an ACSP must or must not contain and the form of the ACSP. Scottish Government does not intend to use this power for commencement of the Act.

Adult carer support plan: provision of information to carer etc.

2.1.92. Section 11 requires the responsible local authority to provide information contained in the ACSP to the carer to whom the ACSP relates and any other person the carer requests, unless the authority does not consider it appropriate to provide the information. For example, It might not be considered appropriate to provide sensitive medical information about the cared-for person to a third party.

2.1.93. When considering information to be shared and who to share it with, the responsible local authority would have to comply with the common law duty of confidentiality and the requirements of data protection and human rights legislation, in particular, the right to private and family life under Article 8 of the European Convention on Human Rights ( ECHR).

2.1.94. Section 11(4) states that the information is to be provided as soon as practicable after the plan is prepared or in the case of a revised plan, when the revised plan is prepared. In terms of good practice, this would mean that the carer is provided with a physical copy of their agreed ACSP within a reasonable timescale by the responsible local authority.

Digital Technology

2.1.95. There is an important role for effective IT systems in sharing agreed information between partners and keeping plans up to date. The Scottish Government through the Health and Social Care Delivery Plan has identified digital technology as key to transforming health and social care services. There has been success through previous eHealth and Technology Enabled Care Strategies in the delivery of many core IT systems required to support efficient service delivery at a local level, and in technology assisted home care to support wellbeing, self-management and safer living at home or in community settings. However, there is a need for even better use of digital technology, data and research in order to achieve this transformation agenda. Our new Digital Health and Social Care Strategy will be published in 2018 at www.ehealth.nhs.scot

Part 2, Chapter 2

Young carer statements

Summary

Section 12 places a duty on responsible authorities to offer a young carer statement to all identified young carers and prepare a young carer statement for those that take up this offer, as well as for any young carer who requests one.

Section 13 states that Scottish Ministers must, by regulations, prescribe timescales for the preparation of young carer statements for young carers of terminally ill cared-for persons.

Section 14 makes reference to the duty on the responsible authority to take into account any impact that having one or more protected characteristic (within the meaning of section 149(7) of the Equality Act 2010) has on the young carer.

Section 15 details the information that must be contained within a young carer statement.

Section 16 allows Scottish Ministers to make provision about the review of young carer statements through regulations.

Section 17 details under which circumstances and with whom the responsible authority must provide the information contained in the young carer statement with.

Section 18 makes provision for the continuation of a young carer statement.

Section 19 details the meaning of ‘responsible authority’ in relation to young carers. The responsible authority is based on where the young carer resides or attends school and can be different from the ‘responsible local authority’ for supporting the young carer (the local authority where the cared-for person resides).

Section 20 details where there may be ‘special cases’ in relation to the responsible authority and young carers.

The duties at Chapter 2 apply to responsible authorities. Depending on the area, these functions may either sit with children’s services or be delegated to the integration joint boards under the Public Bodies (Joint Working) (Scotland) Act 2014. It would be expected that in cases where the functions are not delegated to integration schemes, there would be a level of joint working.

For the purpose of this chapter the terminology ‘relevant authority’ will be used in place of children’s services, local authorities or integration joint boards.

Purpose of young carer statements

2.2.1. The young carer statement ( YCS) provides a framework for identification of the personal outcomes and individual needs for support of young carers by the responsible authority and the substantive provision of support by the responsible local authority to meet those identified needs.

2.2.2. The YCS is intended to ensure that young carers are seen as children and young people first and foremost and are protected from undertaking caring responsibilities and tasks which are inappropriate having regard to their age and maturity.

2.2.3. The policy intention is that the YCS will help and empower young carers, provide them with confidence and assist the child or young person recognise their own needs and identify personal outcomes which are important to them. Responsible authorities must offer a young carer statement to an identified young carer and to prepare one if that offer is accepted.

2.2.4. The YCS provides young carers who request or who are offered and accept a young carer statement, a record of their identified needs and personal outcomes. This document becomes a record which they will receive a copy of and can choose to share this information with any other person that the young carer requests to do so.

2.2.5. In order to promote effective planning for transitions, the YCS ensures that even when a young carer has attained the age of 18 years, any young carer statement prepared in relation to that carer continues to have effect until the carer is provided with an adult carer support plan.

Duty to prepare young carer statements

2.2.6. Section 12 requires a responsible authority to offer an YCS in respect of an identified young carer and to prepare one if that offer is accepted. The duty to prepare an YCS also applies where a young carer has requested one.

2.2.7. Section 12(1)(a) to (c) requires a YCS to set out:

  • a young carer’s identified personal outcomes;
  • a young carer’s identified needs (if any); and
  • the support (if any) to be provided by the responsible local authority to a young carer to meet those needs.

2.2.8. Each of these elements is considered in more detail below.

2.2.9. The YCS is therefore the mechanism through which needs for support are assessed and monitored and support is managed.

2.2.10. The duty under section 12 to offer and prepare a YCS still applies even if the young carer’s identified needs are not or do not seem likely to be deemed eligible for the provision of support (a decision for the responsible local authority according to local eligibility criteria). In this context, it is also recommended that, as part of the YCS, the responsible authority helps the young carer consider preventative support through the information and advice service which must be provided under the Act (see Part 6 of this guidance) and signposting to any community based support that may be available universally or from a local carer centre.

Responsible authority

2.2.11. The ‘responsible authority’ for young carer statements can be different from the ‘responsible local authority’ for supporting the young carer. (The responsible local authority for young carer support is the local authority where the cared-for person resides. For adult carers, the function of preparing an adult carer support plan and providing support both lie with the ‘responsible local authority’ in which the cared-for person resides).

2.2.12. Section 19 sets out the meaning of a responsible authority for preparing a young carer statement. The responsible authority differs according to the circumstances of the young carer:

  • where the young carer is a pre-school child, it is the health board for the area in which the child resides; or
  • where the young carer is not a pre-school child, it is the local authority for the area in which the child resides is the responsible authority.

2.2.13. Section 20 outlines special circumstances which need to be followed when determining the responsible authority for a young carer:

  • where the young carer is a pupil at a grant-aided school or independent school, the directing authority of the school is the responsible authority. The term ‘directing authority’ has the same meaning as in section 45 of the Children and Young People (Scotland) Act 2014, that is the managers of a grant-aided school or the proprietor of an independent school; and
  • where the young carer is a pre-school child who resides in a different health board area than they would otherwise reside because of a decision of a health board or local authority, the responsible authority is the health board where he or she would otherwise reside.

2.2.14. A responsible local authority may make arrangements for another person to prepare a YCS on its behalf.

2.2.15. The duty to prepare a YCS could come under the delegated responsibilities of integration authorities. Some integration authorities will have responsibility for children’s services and others won’t. However, under integration duties placed on local authorities, responsibility for young carer support could be a delegated function of the integration authority, unless it is being retained by the local authority as part of children’s (social care) services or retained by the health board in terms of children’s health services. Part 7 of this guidance provides more information about delegation of functions under the Act.

2.2.16. Section 12(2) requires the responsible authority to offer a YCS to any child or young person they identify as a young carer.

Example – carer identification through awareness raising
Edinburgh Young Carers Project deliver a ‘schools awareness raising campaign’ in Edinburgh.

This involves carer support workers from the young carer centre speaking at school assemblies, classroom sessions and at continuing professional development sessions to teaching staff on young carer issues.

2.2.17. Section 12(3) requires the responsible authority to prepare a YCS for:

  • anyone who accepts an offer under section 12(2); and
  • anyone who requests a YCS and appears to the responsible authority to be a young carer.

2.2.18. This duty applies whether or not the young carer also requires a child’s plan in accordance with section 33 of the Children and Young People (Scotland) Act 2014 (see section 12(5) of the Act).

2.2.19. Section 12(6) deals with cases where the responsible authority (i.e. the authority responsible for preparing a YCS under section 19 and 20) is different from the responsible local authority (defined in section 12(8) as the authority where the cared-for person resides). In such cases the responsible authority must not provide the YCS to the young carer without the approval of the responsible local authority. In practice, this would involve liaison and agreement between the responsible authority and the responsible local authority on the content of the YCS and on provision of support (if any) to the young carer.

2.2.20. Section 12(7) requires that in preparing the YCS, the responsible authority must exercise its functions under this section in a manner which encourages equal opportunities and in particular the observance of the equal opportunity requirements (within the meaning of section L2 of Part 2 of schedule 5 of the Scotland Act 1998) [26] .

Approach to YCS

2.2.21. A YCS must combine the identification of a young carer’s personal outcomes, and an assessment of their needs for support to help them achieve those identified personal outcomes along with the preparation of a support plan to monitor the needs and the support managed. See Section 5 of the Act and Part 2, Chapter 1 of this guidance for the definition of identified personal outcomes and identified needs.

Outcomes-focused approach

2.2.22. Some responsible authorities may wish to approach the preparation of the YCS in a single event following a face-to-face visit and outcomes-focused conversation with the young carer. Other areas may prefer an approach which requires more than one visit and, particularly for more complex cases, facilitates more time to have an outcomes-focused conversation with the young carer in order to complete the support planning and then finalise the YCS.

2.2.23. At a local level, clear procedures for how a YCS will be undertaken and by whom as well as timescales/prioritisation require to be established and understood by the relevant staff groups. Young carers will need to know what to expect when they request, or accept the offer of a YCS and it is recommended that this information is made freely available.

2.2.24. It is recommended that responsible authorities be mindful that where a young person is preparing for school exams or otherwise focusing on their education, that the preparation and review of the YCS does not interfere with the young carer’s studies.

2.2.25. When undertaking the outcomes-focused conversation with the young carer to prepare the YCS the responsible authority is encouraged to be respectful of the young person’s wishes, opinions and boundaries. It is suggested that when undertaking the conversation with a young carer, responsible authorities make use of coproduction and child-centred approaches, active listening, use of empathy and any other relevant skills.

2.2.26. The approach to an outcomes focused conversation with a young carer would benefit from a solid understanding of children’s rights and for practitioners to promote and respect those rights. The United Nations Convention on the Rights of the Child ( UNCRC) is an international law which sets out the rights of children and young people. The UNCRC underpins Getting it right for every child, Scotland’s approach to improving outcomes for children and young people. There is useful guidance on the UNCRC and the foundation of Getting it right for every a [27] .

2.2.27. Responsible authorities would benefit from taking into account the UNCRC when preparing a YCS. All of the rights are of equal importance and all are underpinned by four general principles:

  • all the rights must be available to all children without discrimination (Article 2);
  • the best interests of the child must be a primary consideration in all actions concerning children (Article 3);
  • that every child has the right to life, survival and development (Article 6); and
  • that the child’s view must be considered and taken into account in all matters affecting them (Article 12).

Who can prepare the young carer statement?

2.2.28. We would expect responsible authorities to give consideration to who is best placed to prepare the YCS, e.g. the local authority, a health professional or someone else who is suitably qualified to do so. This may be someone who has an existing relationship with the young carer and their family.

2.2.29. This function could be undertaken by a third sector organisation such as a young carer support provider or a carers centre, as their staff may have the necessary skills and experience to undertake YCSs. Responsible authorities are encouraged to work collaboratively with the third sector in developing their models for preparing YCSs.

2.2.30. It is for the responsible authority to decide how it carries out the function and whether or not it wishes to commission third sector partners to undertake the function of preparing individual YCSs. There will remain a role for the responsible authority to oversee the delivery and quality of these assessments in practice. Some authorities in Scotland already delegate the assessment function of young carers to the third sector and have contracts in place.

Learning from YCS pilots
During the pilots for implementing this aspect of the Act, it was found that there was potential for further integration of third sector provision when undertaking the YCS. It was found that a strong partnership approach between third sector and statutory services worked best to support young carers. The pilots also found that young carers felt that they ought to be able to choose who helps them prepare a YCS, including teachers, sports coaches or others.

Example – Third sector role in assessment
Quarriers, a third sector organisation are contracted by Moray Council to provide support to young people (aged 18 years and under) who provide care to family members.

They are also contracted by Moray Alcohol and Drug Partnership to specifically identify and support young people caring for family members who misuse alcohol or drugs.

Services offered include undertaking carers assessments; supporting young carers to participate in existing recreational facilities in their community and offering age appropriate information, training and advice.

Potential conflict of interest

2.2.31. There could be a potential conflict of interest where the body carrying out the YCS assessment is also a provider of young carer support. This could happen if the responsible authority commissions the YCS function to an external third sector provider, for example a young carers centre, which also provides support. The conflict could arise because any identified needs of the young carer which meet the local eligibility criteria threshold will trigger the duty to support the young carer and as such could have funding implications for both the responsible authority and the young carer support provider.

2.2.32. This need not prevent delegation of assessment functions to third sector providers. Potential conflicts of interest can be reduced through being careful about offering choice and control to the young carer to meet their eligible needs and personal outcomes. This could be achieved through offering the young carer a range of support options as required under the Social Care (Self-directed Support) (Scotland) Act 2013. Some of those support options may not necessarily be provided by the young carers centre who undertook the YCS.

2.2.33. To mitigate the risks from any potential conflicts of interest, the responsible authority may wish to consider monitoring processes and checks in its contract with a third sector provider, so that it can audit case files against YCSs prepared and see how decisions were reached and budgets allocated.

Links to other plans and strategies for children and young people

Local carer strategy

2.2.34. In preparing a local carer strategy, section 32 of the Act requires the local authority and the relevant health board to have regard to any plans for the provision of services relevant to young carers which are set out in the children’s services plan prepared for the area of the local authority under section 8 of the 2014 Act. See Part 5 of this guidance for further information on local carer strategies.

Child’s plan

2.2.35. While Part 5 of the Children and Young People (Scotland) Act 2014 has not yet been commenced, a number of authorities may provide an integrated planning framework for children and young people on a policy basis (the child’s plan). Where a child’s plan is in place for a young carer, it would be good practice to consider and agree with the child and other relevant persons how the YCS sits alongside the child’s plan and forms part of it. Where possible it would be of merit to reduce the number of separate meetings for different plans and to coordinate these plans into one meeting. This would help to ensure a coherent approach to planning.

Considerations for children’s services and/or education colleagues

2.2.36. The responsible authority will be aware of when a young carer in an educational setting has a co-ordinated support plan ( CSP).

2.2.37. Education authorities and other agencies have duties under the Education (Additional Support for Learning) (Scotland) Act 2004 (as amended) (‘the 2004 Act’) to identify, provide for and review the additional support needs of their pupils. An additional support need can arise for any reason and be of short or long term duration. Additional support may be required to overcome needs arising from learning environment; health or disability; family circumstances or social and emotional factors.

2.2.38. Education authorities can ask other agencies (including social work services, health boards and Skills Development Scotland) for help in carrying out their duties under the 2004 Act. Other agencies must respond to the request within a specific timescale (but there are exceptions to these timescales).

2.2.39. Children and young people's needs are met through planning for their learning and support, usually through an individualised educational programme (this may have another name such as an Additional Support Plan) which sets out targets for learning and the support to be provided (usually termly). For children and young people who have complex or multiple needs which require significant support from education and another agency or agencies a co-ordinated support plan may be required. The purpose of the CSP is to support co-ordinated planning to meet pupils' needs. The plan lasts for up to a year.

2.2.40. A young carer can be eligible for a CSP if the education authority agrees that they have additional support needs which meet the criteria for a co-ordinated support plan. To meet the criteria for a co-ordinated support plan, the support required must be significant and from more than one agency in addition to the education authority and for more than a year. This might include family circumstances relevant to caring acting as a barrier to the learning outcomes of a young carer

2.2.41. There are a range of dispute resolution mechanisms available; including independent mediation and adjudication, and referral to the Additional Support Needs Tribunals for Scotland. The Tribunals hear references involving children and young people who either have, or are potentially entitled to have, a CSP, certain placing requests and transitional arrangements.

Barriers to learning

2.2.42. The statutory code of practice [28] which provides guidance on the 2004 Act makes clear that young carers may experience barriers to their learning and additional support needs should be identified, provided for and reviewed in line with the requirements of the 2004 Act.

2.2.43. Further, the guidance on Attendance in Scottish Schools, ‘Included, Engaged and Involved: Part 1 [29] makes clear that education authorities should recognise the impact that caring responsibilities may have on school attendance. The guidance makes clear the need to follow up on changes in patterns of attendance or increased absence to ensure that appropriate support is provided if necessary.

Signposting, information and advice if young carer refuses offer of YCS

2.2.44. Not all young carers will accept the responsible authority’s offer of a YCS. It is a choice for the young carer to decide to accept this offer of a YCS. Where a young carer declines the offer of a YCS, the responsible authority could consider signposting the young carer, if they agree and with consent to a young carer centre or similar support provider. Also some young carers may of their own accord approach a young carer centre or support provider for information, advice and support.

Low and fluctuating needs

2.2.45. It is recommended that responsible authorities consider the potential fluctuation of the young carer and/or the cared-for person’s needs. For example where the responsible authority is aware that the cared-for person’s needs fluctuate over time due to a mental health condition, the YCS carried out at a particular moment may take into account the cared-for person’s history to establish a complete picture of the cared-for person’s needs and the impact these fluctuating needs have on the caring situation.

2.2.46. Low level needs and the support to meet those identified needs will be considered as part of the YCS process. This process will be based on the identification of personal outcomes, needs and risks. It is recommended that consideration be given to whether a young carer’s identified needs can be met by the local information and advice service or general services in the community.

Tensions between young carer and cared-for person

2.2.47. There can be circumstances where there are tensions between the young carers and the cared-for person. The caring role can be stressful and the cared-for person may not be coping well with their condition. This can put a tremendous strain on the relationship between the young carer and the cared-for person. The responsible authority will need to take this into account when preparing a YCS. Where the caring situation becomes unmanageable or has a detrimental impact on the young carer’s wellbeing or that of the cared-for person, it is recommended that the professionals working with the young carer seek advice from the appropriate professionals within the responsible authority.

2.2.48. This could include, if necessary, raising a child protection [30] concern or an adult protection [31] concern in line with either their local multi-agency child protection guidelines (in accordance with the Children (Scotland) Act 1995 and other relevant legislation) or their local multi-agency adult protection guidelines (in accordance with the Adult Support and Protection (Scotland) Act 2007).

Content of young carer statement

2.2.49. Section 15 outlines what information must be contained in a YCS.

Young carer’s personal circumstances

2.2.50. Section 15(1)(a) requires the YCS to include information about the young carer’s personal circumstances at the time when the YCS is being undertaken. This must include information about the nature and extent of care provided or to be provided and information about the impact of caring on the young carer’s wellbeing and day-to-day life.

2.2.51. When considering the impact of caring on the young carer’s wellbeing and day to day life, section 15(3) requires the responsible authority to assess the wellbeing of a young carer by reference to the extent to which the matters listed in section 96(2) of the Children and Young People (Scotland) Act 2014 are or, as the case may be, would be satisfied in relation to the young carer. In doing so, the responsible authority is to have regard to the guidance issued under section 96(3) of the 2014 Act. This ensures that the eight wellbeing indicators (also known as the SHANARRI indicators) of the national Getting it right for every child approach [32] must be used when considering the child’s personal circumstances.

Able and willing to care

2.2.52. Section 15(1)(b) requires the YCS to contain information about the extent to which the young carer is able and willing to provide care for the cared-for person. When considering whether the young carer is able and willing to provide care, it is recommended to take account of the age and maturity of the young carer along with the nature of the caring role and any associated risks.

Appropriateness of caring role

2.2.53. Section 15(1)(c) requires information about the extent to which the responsible authority considers that the nature and extent of the care provided by the young carer is appropriate.

2.2.54. It is necessary to ensure that young carers are seen as children and young people first and foremost and that they are protected from undertaking caring responsibilities and tasks which are inappropriate having regard to their age and maturity.

2.2.55. For example, the responsible authority might consider that any personal, intimate care provided by a young carer is not appropriate. They might consider that the young carer is engaged in caring during too many hours per week and have concerns on the impact that this has on their wellbeing. They might consider that the young carer, particularly a very young child, is too young to be carrying out any caring role. In this context, the responsible authority, must consider whether the caring situation of the young carer is appropriate and take any required steps as necessary.

2.2.56. There is a relatively small number of very young carers, where there is a very young child (whether pre-school or in the early years of primary school) caring for a family member, There may be some scope for a young child to make a small contribution to the care of their parents, but this has to be set at the very lowest level, taking account of the child’s age and maturity amongst other factors. It is strongly recommended that support provided ought to be directed towards removing them from their caring role through enhanced support for the person that they care for.

Link to assessment of cared-for person’s needs and outcomes

2.2.57. The willingness and ability of the young carer to continue to provide care to a cared-for person may be closely linked to the support provided to the cared-for person following other assessments. It is therefore recommended that the responsible local authority takes into account the outcomes of any prior assessment of a cared-for person’s needs and outcomes. This may help to establish whether the young carer is able and willing to continue to provide care to the cared-for person. Amendments under section 30 of the Act also require the YCS and the views of the young carer to be taken into account when carrying out assessments under other legislation, as considered below.

2.2.58. Section 30 of the Act amends section 12A of the Social Work (Scotland) Act 1968, which sets out the duty of local authorities to assess needs in relation to social care for adults. The effect of the amendments is to require the local authority to take account of the care provided by the young carer as set out in the YCS when making decisions about the provision of support to meet the cared-for person’s needs and outcomes. The local authority is also required to take account of the views of the young carer in so far as it is reasonable and practicable to do so.

2.2.59. Section 30 of the Act makes similar amendments to section 23 of the Children (Scotland) Act 1995, which sets out the duty of the local authority to assess the needs of children affected by disability. The effect of the amendments is to require the local authority to take account of the care provided by the young carer as set out in the YCS when making decisions about the provision of support to meet the needs and outcomes of the cared-for child. The local authority is also required to take account of the views of the young carer in so far as it is reasonable and practicable to do so.

2.2.60. The responsible authority may consider preparing a YCS at the same time it undertakes an assessment of the cared-for person’s needs and outcomes (although not necessarily as a joint exercise where this could lead to a tension).

Emergency plans for the cared-for person

2.2.61. Section 15(1)(d) requires information about whether the young carer has arrangements in place for the care of the cared-for person in an emergency.

2.2.62. Emergency planning (sometimes called contingency planning) includes planning for events such as the young carer not being able to care due to the carer’s illness and unable to support the cared-for person taking their daily medication. There may also be adverse weather or transport problems which prevent the young carer from accompanying the person they are caring for to a doctor’s appointment or an outpatient clinic. (See guidance in Chapter 2 of Part 4 on carer involvement in hospital discharge).

2.2.63. It is recommended that any discussions on emergency planning with the young carer also be thoroughly discussed with the cared-for person who often will be the parent or guardian of the young carer, to ensure that any agreed emergency plan is appropriate and takes into account the age and maturity of the young carer.

2.2.64. Under section 34(2) local authorities must establish and maintain an information and advice service for relevant carers including emergency care planning and future care planning for carers.

2.2.65. Some areas already offer young carers emergency plans or discuss emergency planning with them whilst other areas offer young carers an emergency card. An emergency card lets the emergency services or social care services know that a person is a carer. Encouraging young carers to carry the card at all times can help services to put other support in place in a crisis.

Example – Young carers card – use in emergency
Perth and Kinross Association of Voluntary Service ( PKAVS) in partnership with NHS Tayside and Perth and Kinross Council offer a young carers card.

It has four sections on the reverse of the card showing medication, diagnosis, prognosis and discharge/care planning. As part of the application process, it is agreed with young carers and their parents what sections the young carer card will have information on.

The card also acts as an alert, for example, if the young carer has an accident their young carer card will allow others to know that there is a cared-for person at home and will need to be updated of this situation and possibly require additional care.

2.2.66. ENABLE Scotland has a suite of resources about emergency planning which applies in all caring situations, including caring for adults with health needs or disabilities [33] . Responsible authorities are encouraged to make use of these resources or direct young carers depending on their age and circumstances to the ENABLE emergency planning resources.

Future care plans for the cared-for person

2.2.67. Section 15(1)(e) requires the YCS to contain information about whether the young carer has arrangements in place for the future care of the person that they care for. There may be less stress and anxiety on the young carer if appropriate plans are in place for the future care of the cared-for person.

2.2.68. Future care planning could also be identified in relation to a personal outcome or an identified need later in the YCS process. In that case the authority responsible for supporting the young carer is well placed to consider what support can/is to be provided to meet that need. The information and advice services required under Part 6 of the Act must provide information and advice about emergency care planning and future care planning for carers.

2.2.69. When any future care plans are developed, it is recommended that they are part of plans applicable to the cared-for person and not the sole responsibility of the young carer. The young carer may have a role in the implementation of any future care arrangements but wouldn’t normally be expected to have a lead role unless it is deemed appropriate to do so and in agreement with the cared-for person.

2.2.70. Where the young carer appears to have a significant need for support with future care planning, this would be considered as part of the YCS and the identification of needs; and if this identified need meets local eligibility criteria, the responsible authority will be under the duty to provide support.

2.2.71. Information and advice services for young carers can signpost to or be designed in partnership between a carer centre and specialist, professional, independent services to offer future care planning services such as including making wills, trusts and longer term financial planning if appropriate to a young carer’s situation. Responsible authorities may also consider the provision of carer advocacy services and make reference to the Scottish Government’s guidance on carer advocacy in Scotland [34] .

2.2.72. This would be in line with the requirements under section 34(2) around the provision of an information and advice service for relevant carers, particularly on income maximisation for carers, advocacy for carers and emergency care planning and future care planning. Part 6 of this guidance deals with information and advice for carers.

Link to anticipatory care plans

2.2.73. If relevant to the situation of the young carer, information contained in the YCS may aid the preparation of parts of an anticipatory care plan of the cared-for person, if the young carer agrees to share that information. An anticipatory care plan is a dynamic record that can be developed over time through an evolving conversation, collaborative interactions and shared decision making. It is a summary of the discussions between the cared-for person, the young carer (if appropriate) and the practitioner. Chapter 2 of this Part contains more information on anticipatory care planning.

Personal outcomes

2.2.74. It is recognised that caring for another person is likely to impact on a young carer physically, emotionally and on the way in which that carer lives his/her day to day life. The policy intention of the Act is to ensure that young carers are seen as children and young people first and foremost and that they are protected from undertaking caring responsibilities and tasks which are inappropriate having regard to their age and maturity. Consequently, the YCS seeks to support carers by putting measures in place that will help a young carer to live their own life and to achieve their own goals and aspirations. These day to day goals and longer term aspirations are to be documented within the YCS as the carer’s ‘personal outcomes’.

2.2.75. Section 15(1)(f) requires the YCS to contain information about the identification of the young carer’s personal outcomes and what these outcomes are. ‘Personal outcomes’ is defined at section 4 of the Act to include outcomes which, if achieved, would enable young carers to provide or continue to provide care for the cared-for person(s).

2.2.76. The Carers (Scotland) Act 2016 (Adult Carers and Young Carers: Identification of Outcomes and Needs for Support) Regulations 2018 require personal outcomes and needs for support to be identified following a conversation with the young carer. Such conversations can take a variety of forms, for example in the case of carers with communication difficulties. The regulations also state that, like the preparation of YCSs, identification of personal outcomes and need for support is a function of the responsible authority. This does not preclude the responsible authority arranging for another body, such as a young carer support organisation, to do the work on its behalf. The regulations also require a young carer’s personal outcomes and needs for support to be reviewed when his or her YCS is reviewed.

2.2.77. The young carer’s identified personal outcomes should link and support the achievement of the child’s potential in relation to the eight wellbeing indicators of the national Getting it right for every child approach. The wellbeing indicators are: safe, healthy, achieving, nurtured, active, respected, responsible, and included.

2.2.78. In terms of approach to identification of the young carer’s personal outcomes, the responsible authority may wish to consider how coordinated services or support can impact on the young carer’s wellbeing. The personal outcomes will be specific to the young carer and their circumstances and may have a short or longer term focus as required.

Evidence – Personal outcomes
The review paper Review of evidence on personal outcomes relevant to the Carers (Scotland) Act 2016, Emma Miller (2017), University of Strathclyde [35] is a valuable source of information on domestic and international practice in the literature to evaluate personal outcomes; their use, efficacy and integration with existing processes and procedures.

Consideration of equalities when identifying personal outcomes

2.2.79. Section 14(2) requires that in identifying a young carer’s personal outcomes and needs for support, the responsible authority must take into account any impact that having one or more protected characteristic (within the meaning of section 149(7) of the Equality Act 2010) has on the young carer [36] .

Equalities Example – Race and sexual orientation
During the preparation of a young carer statement, a South Asian teenager discloses to the responsible authority that he is gay and in his culture this can be very difficult for others to accept, including within his own family. He doesn’t want his friends or peers at high school to know that he is gay or a young carer, in case he gets bullied.

Therefore, the responsible authority has established through the identification of a young carer’s personal outcomes and needs for support, that there is an impact from two protected characteristics, race and sexual orientation on the young carer. This impact must be taken into account when preparing the YCS including the young carer’s personal outcomes and eligible needs for support.

Identified needs

2.2.80. Section 15(1)(g) requires the YCS to contain information about the identification of the young carer’s identified needs for support and what those needs are if any. ‘Identified needs’ are defined in section 5 of the Act as the needs for support which are identified in order to meet the young carer’s identified personal outcomes. These support needs could include a broad range including the young carer’s physical needs, emotional needs, relationship needs, health needs, economic needs and physical environment needs. Identified needs must be recorded in the YCS. If a young carer has no identified needs that must also be recorded. (See also advice above about the requirements of the Carers (Scotland) Act 2016 (Adult Carers and Young Carers: Identification of Outcomes and Needs for Support) Regulations 2018).

2.2.81. All of the matters in section 15(1)(a) to (m) must be considered when preparing a YCS and have an appropriate level of information recorded. A proportionate approach may be considered by the responsible authority when doing this, taking into account what issues are raised through the conversation with the young carer and which issues need to be raised with the cared-for person.

Example
Lucy is 10 years old and lives with her mum, dad and brother. Her brother has cerebral palsy. Lucy had an assembly at school where the local young carers’ service spoke about the groups and support they provide, and has since asked her teacher for a young carer statement.

Lucy’s parents provide most of the practical care for her brother, but she helps with housework and spends time playing with her brother and making sure he is happy. Her teacher refers her to the young carers’ service, who speak to Lucy and her parents and prepare a young carer statement on behalf of the local authority. Lucy attends the young carers group sometimes and is happy with this support.

In Lucy’s case, her YCS is focused on making sure she and her parents understand what further support options are available and who to contact if she has any concerns.

Whole family approach

2.2.82. The responsible authority could build a more holistic view of the needs of the young carer and the person they care for by considering what other support may be available through exploring their networks and the wider community, allowing for a whole family approach.

2.2.83. In considering the impact of the cared-for person’s needs on those around them, the responsible authority may wish to consider whether additional information and advice would be beneficial to those people identified. Alongside the main young carer there may be others undertaking a caring role in the family. For example where a young carer has siblings, they also may be young carers, which would lead to the offer of a YCS.

Example – Raising awareness of young carers
Action for Children’s Young Carers Project in North Lanarkshire which is supported by the Health and Social Care Partnership raises awareness of young carer issues in various locations and professional teams including hospitals, health centres, schools and mental health teams. The carers project is actively promoted in these locations and during carers week, awareness training sessions to GP’s and practice staff groups were delivered.

Example – Supporting young carers in school
Stirling Young Carers Service has worked with all secondary schools in their area so that there is a timetabled dedicated young carers class as part of the curriculum. Young carers are referred to the class through pupil support.

The young carers decide what the topics for study will be, and these are often have a home economics focus. The young carers worker from the service drops in on the classes regularly to provide a link between school and the young carers service, but many of the young carers do not attend the young carers groups offered by the service, feeling that they have adequate support at school.

Information provision

2.2.84. Section 15(1)(h) requires information about the support available to young carers and cared-for persons in the responsible local authority’s area to be contained in the YCS. It is recommended that this information be tailored to the specific identified personal outcomes and needs of the young carer having regard to the needs of the person that they care for.

Young carers living in different areas from the cared-for person

2.2.85. Section 15(1)(i) requires that if a young carer does not reside in the responsible local authority’s area (where the cared-for person resides), information must be provided about the support available to young carers in the area where they reside. (In these cases, the responsible local authority for supporting the young carer will be different from the responsible authority for preparing the YCS).

2.2.86. This information may for example, take the format of a leaflet or a carer information pack. It may also include contact details of the information and advice service of the other local authority area or carer centre and instructions on relevant online information.

2.2.87. The responsible local authority, where the cared-for person resides, has the power and duty to support the young carer. As a matter of best practice, a responsible local authority which has identified a young carer who cares for someone in their area but resides in a different local authority area, is recommended to liaise with the responsible authority (where the young carer resides) to ensure that the young carer has access to a YCS.

YCS for young carer caring for people in more than one local authority area

2.2.88. As the responsible authority is determined by the young carer’s circumstances, rare situations such as this would not complicate the decision as to who is responsible for the YCS.

Case study – Young carer to two cared-for people in different areas
A young carer whose parents have separated. Suzie’s father has bipolar disorder and her mother has Parkinson’s disease. Suzie is aged fifteen and lives with her mother the majority of the time and provides a caring role and also provides a caring role for her father who lives in another local authority area.

The responsible authority where Suzie resides with her mother would be responsible for the preparing the YCS. This is because the responsible authority for a YCS is determined by the young carers’ circumstances (rather than those of the cared-for person). In this context, there will only be one responsible authority offering and preparing the YCS.

2.2.89. In these circumstances, the duty (or power if appropriate) to provide support to the young carer, would rest with both local authorities where the cared-for persons are residing.

2.2.90. Similar to adult carers (see Chapter 1 of this Part), each local authority’s eligibility criteria would be relevant in its own decision making about support, however we recommend collaboration between each area in that decision making process.

2.2.91. Decisions about sharing the costs of carer support in these circumstances are a matter for the local authorities involved, however it is recommended that a 50:50 split for carer support is a sensible default position. Any additional support required for the cared-for persons would be a matter for their respective local authorities.

2.2.92. If there is one YCS to cover both caring situations, careful consideration would be required by the responsible authority to ensure that information sharing is well managed.

Young carer who resides in Scotland caring for someone outwith Scotland

2.2.93. There may be a limited amount of these situations for responsible authorities. However, when they do arise there would be a responsibility to offer and prepare a YCS by the responsible authority, if that offer is accepted by the young carer.

2.2.94. Scottish local authorities may still have responsibilities to support young carers by virtue of their wider duties or powers to support them as children under the Children and Young People (Scotland) Act 2014 [37] .

2.2.95. A carer living in Scotland who cares for someone outwith Scotland may be eligible for support from the local authority in which the cared-for person resides. In these instances, it would be a matter for the relevant local authority in England or Wales, or the Health and Social Care ( HSC) Trust in Northern Ireland to make decisions as set out under legislation in those countries.

2.2.96. Part 3, Chapter 2 of this guidance provides further information about cross-border caring situations.

Case study – ‘distance caring’ relationship with young carer in Scotland and cared-for person outwith Scotland

Ross is aged seventeen and a young carer, caring for his father who has chronic back pain and lives in England. Ross resides in the Borders with his mother after his parents separated. He visits his father weekly to help provide more practical assistance such as help with a supermarket shop. He also provides his dad with emotional support, liaising with statutory services and arranges other help such as gardening support.

If Ross identifies himself to his responsible authority, Scottish Borders Council, they would then be in a position to offer and undertake a YCS. However, in terms of duty to support that would not sit with the local authority where Ross lives, but they may use their powers to provide some support to him.

Young carer resides outwith Scotland caring for someone in Scotland

2.2.97. There may be a limited number of situations where a young carer who resides outwith Scotland is providing care to someone who resides in Scotland.

2.2.98. For young carers that may be in this situation, the Act has not created a duty for the Scottish local authorities of the cared-for person to offer a young carer statement. This is because the ‘responsible authority’ for a young carer statement, under sections 19 and 20, is determined by the young carer’s own circumstances, rather than those of the cared-for person.

2.2.99. As a consequence, because the duty to support young carers under the Act is dependent on the existence of a YCS, there is no duty or power for Scottish local authorities of the cared-for person to support the young carer.

2.2.100. It is recommended that, subject to the normal requirements on consent to sharing of information, the Scottish local authority of the cared-for person makes sure that the local authority where the young carer lives is aware of their circumstances.

2.2.101. Part 3, Chapter 2 of this guidance provides further information about cross-border caring situations.

Case study – ‘distance caring’ relationship with cared-for person in Scotland and young carer outwith Scotland
Jamal aged fifteen, who lives in Berwick upon Tweed and provides care to his uncle, Saeed who lives in the Scottish Borders. Jamal’s uncle has multiple sclerosis and appreciates his regular visits from his nephew who helps him with emotional support and practical tasks in and around his home. Although Jamal is a young carer, he won’t have had a YCS undertaken as he resides outwith Scotland.

However, with permission, Scottish Borders local authority, where his uncle lives, has got in touch with Northumberland County Council, to let them know of Jamal’s circumstances.

Support to be provided

2.2.102. Section 15(1)(j) requires that if the young carer’s identified needs meets the local eligibility criteria, the YCS must contain information about the support which the responsible local authority provides or intends to provide to the young carer to meet these eligible needs. In this section, the responsible local authority, in relation to a carer, means the local authority for the area in which the cared-for person resides.

Example – support provided through young carers card
Dumfries and Galloway Carers Centre offer a young carers card to young carers. This helps the young carer to be involved in information sharing, if consent is given about the treatment and condition of the cared-for person, be better involved with medical procedures and kept up to date by professionals.

Locally if the family of the young carer agrees for the Fire and Rescue Service to be informed that a young carer resides in the household then this information is added to the their system. Then in the event of a fire occurring in the home, the Fire and Rescue Service will be aware of a young carer in the home.

The card also allows peace of mind when away from the cared-for person. It can also be presented to other professionals who are involved in their lives and allows an opening for a conversation about their caring role with professionals including with pupil support teachers, school nurses and class teachers.

2.2.103. Part 3, Chapter 2 of this guidance deals with the power and duty to provide support to carers under section 24.

2.2.104. At this support planning stage, if any of the young carer’s identified needs meets the threshold of the local eligibility criteria, the responsible local authority must offer the four options of Self-directed support [38] to the young carer based on their indicative budget or relevant amount.

2.2.105. There is no single approach to resource allocation prescribed on the face of the Social Care (Self-directed Support) (Scotland) Act 2013, nor any single method recommended by the Scottish Government.

2.2.106. The authority may wish to adopt an equivalence model where they determine the cost of the service to be arranged and then provide the equivalent amount as a budget for the supported person or carer to control. Alternatively, it may wish to adopt a resource allocation system whereby the authority gathers information about the person’s outcomes, allocates points to those outcomes and then allocates a level of funding. In addition, decisions about budgets may be made on a case by case basis. Reference can also be made to the statutory guidance to accompany the Social Care (Self-directed Support) (Scotland) Act 2013 [39] .

2.2.107. Alternatively, the responsible local authority may decide to offer one holistic budget if all parties agree, that extends to meet both the eligible needs and personal outcomes of the young carer and the eligible needs and personal outcomes of the cared-for person – where it is satisfied this is in the best interests of both parties.

2.2.108. Section 15(1)(k) outlines that if the young carer’s identified needs do not meet the local eligibility criteria, information about any support which the responsible local authority nevertheless agrees to provide must be included in the YCS. Responsible local authorities can choose to provide personalised support to the young carer on a discretionary basis using their powers rather than duties to provide support. This could include making a referral or signposting young carers to universal or community based services, for example a young carers centre or a local youth centre.

Preventative approach whether or not needs meet eligibility criteria

2.2.109. Regardless of whether the young carer’s identified needs meet the local eligibility criteria, it is recommended that other preventative supports in the community are still considered. This for example may include advice and information, emotional support, befriending or a welfare benefits check to maximise family income. Some of these support services may be offered by the local young carer centre or similar resource for children and young people. Some of these identified needs may be met by changes to practices in the school the young carer attends, such as allowing some flexibility in attendance and not penalising the young carer for being late occasionally if this is in relation to caring

Breaks from caring

2.2.110. Section 15(1)(l) requires the YCS to include information about whether support should take the form of or include a break from caring. Part 3, chapter 2 sets out guidance about breaks from caring under section 25 of the Act.

Review of YCS

2.2.111. Section 15(1)(m) requires the YCS to contain information about the circumstances in which it is to be reviewed.

2.2.112. The Carers (Scotland) Act 2016 (Review of Adult Carer Support Plan and Young Carer Statement) Regulations 2018 [40] specify circumstances in which YCSs must be reviewed by the responsible authority. These are:
a) When the cared-for person becomes a resident in a different local authority area;
b) When the cared-for person becomes resident in accommodation provided under:
i. Part 2 of the Social Work (Scotland) Act 1968; or
ii. Section 25 of the Mental Health (Care and Treatment) (Scotland) Act 2003; or
iii. Part 2 of the Children (Scotland) Act 1995; and
c) Any other change in the young carer or cared-for person’s circumstances which the responsible authority views as having a material impact on the care provided by the young carer.

2.2.113. The Regulations highlight that a review of the YCS may be appropriate where support to the cared-for person has changed. It is for the responsible authority to decide in each individual situation where this change of circumstance warrants a review.

2.2.114. Responsible authorities must also consider what other circumstances will be relevant to trigger a review in individual cases. These might include:

  • An agreed period of time, e.g. one year;
  • deterioration in the health of the young carer or cared-for person; or
  • the cared-for person being discharged from hospital.

2.2.115. Responsible authorities are encouraged to seek the views of the relevant young carer when determining whether any other change in circumstance has had a material impact on the care provided by the young carer.

2.1.96. It would be expected that the review process would be proportionate to the situation. A review will keep the information contained in the YCS up to date and relevant and would always look at whether the needs for support and personal outcomes of the young carer have changed. This may result in a change in the young carer’s eligible needs.

Effectiveness of support under previous YCS

2.2.116. After an initial YCS has been prepared, section 15(2) requires that after each review, the revised YCS must contain information about the extent to which any support provided under a previous statement has assisted in the achievement of the young carer’s personal outcomes.

Inclusion of other information in YCS

2.2.117. The responsible authority can decide what additional content to include in the YCS, over and above the minimum requirements set out in the legislation. This could be information tailored to individual YCSs or general information. An example could be a risk assessment in relation to tasks undertaken by the young carer such as the moving and handling of the person that they care for.

2.2.118. Section 15(4) also allows Scottish Ministers to make regulations about other information which a YCS must or must not contain and the form of young carer statements. This power is not currently being used.

Timescales for preparing a young carer statement

2.2.119. There are no timescales set out in the Act for preparing and completing individual adult carer support plans and young carer statements. However, in due course, Scottish Ministers must use the regulation-making power in section 13 of the Act to prescribe timescales for the preparation of YCSs in relation to carers of terminally-ill cared-for persons.

2.2.120. Section 31(2)(h) requires the local carer strategy to set out the intended timescales for preparing young carer statements. The intention of section 31(2)(h) is to give young carers collectively an indication of how long, on average, they are likely wait for an YCS. It is fully expected that some will take less time and some will take longer than those indicated time periods for valid reasons.

2.2.121. There may be different timescales for completion of individual YCSs. Therefore YCSs ought to be prepared within reasonable timescales taking into account the urgency of needs for support and any fluctuation in those needs. Responsible authorities may have guidance for timescales based on urgency or risk. There may be valid reasons for a YCS taking longer to complete than perhaps anticipated, for example, where the young carer’s needs are complex and require more than one contact to prepare and complete the statement and/or where support required is specialised and not readily available. Responsible authorities are encouraged to focus on achieving the right outcomes for the young carer rather than allowing set timescales to become a de facto target or input measure.

2.2.122. Responsible authorities are advised to inform the individual young carer of an indicative timescale over which their YCS will be conducted and keep the young carer informed throughout the assessment process. Some responsible authorities also, as a matter of good practice and courtesy, advise individual carers of any delays and the reasons for the delays.

Timescales for YCSs for young carers of terminally ill cared-for persons

2.2.123. Section 13 requires Scottish Ministers to prescribe timescales in regulations for the preparation of the YCS in relation to young carers who are caring for someone who is terminally ill. Research is currently underway to consider what timescales would be appropriate. Regulations will be brought forward in due course once that research is complete and this guidance will be updated accordingly.

2.2.124. The term, ‘terminally ill cared-for person’ for the purposes of this section is a person who is terminally ill due to suffering from a progressive disease and death as a consequence of that disease can be reasonably expected within six months.

Young carer statement: provision of information to carer etc.

2.2.125. Section 17 requires the responsible authority to provide information contained in the YCS to the young carer to whom the YCS relates and any other person the young carer requests, unless the authority does not consider it appropriate to provide the information. For example, It might not be considered appropriate to provide sensitive medical information about the cared-for person to a third party.

2.2.126. The responsible authority is well placed to have a discussion with the young carer about how they might wish to use their YCS and who they wish to share it with. Before the YCS is completed and signed off, it is recommended that the responsible authority records who will receive a copy of it.

Learning from YCS pilots
During the pilots for implementing this aspect of the Act, it was found that when integration authorities involved young carers in the design of the YCS process, this helped to understand their needs better and any relevant support.

Young carers who had been involved also felt that they owned the YCS. They reported that this was aided by including a section in the YCS on who the YCS was to be shared with.

2.2.127. It is paramount that the views of the young carer and any other person, to whom the information relates, for example, the cared-for person, must be sought where it is reasonably practicable to do so and the responsible authority must have regard to these views. If information is to be shared in the absence of agreement of the person to whom the information relates, there must be a clear legal basis for sharing this information. It is good practice to retain a record of the reasons for sharing information in the absence of such agreement.

2.2.128. When considering information to be shared and who to share it with, the responsible authority should comply with the common law duty of confidentiality and the requirements of data protection and human rights legislation, in particular the right to private and family life under Article 8 of the European Convention on Human Rights ( ECHR).

Case study – support through communication and information sharing
Joe is an isolated young carer in a household caring for both his parents. His father has severe mental health problems and his mother has drug and alcohol issues. He was suffering from anxiety.

The GP and Joe agreed to keep in touch by email. The GP also made a referral to the local young carer centre with Joe’s consent. The GP arranged for a room at the medical centre for the worker from the young carer centre to conduct their visits and also kept in email contact with the young carer centre for updates and ways to support. This resulted in a reduction in Joe’s anxiety as he now has support to help care for his parents and they are also getting additional support.

2.2.129. Section 17(4) states that the information is to be provided as soon as practicable after the statement is prepared or in the case of a revised statement, when the revised statement is prepared. In terms of good practice, this would mean that the young carer is provided with a physical copy of their agreed YCS within a reasonable timescale by the responsible authority. It is suggested that this information be in a format and language that the young carer can access and readily understand.

Continuation of young carer statement

2.2.130. Section 18 outlines the circumstances in which there would be a continuation of the YCS. It would be good practice for discussions to be taking place between the young carer and the responsible authority as the young carer nears 18 years old. This would include discussion on whether the young carer wishes to remain in their caring role and how they undertake the transition into adult carer services and require an adult carer support plan.

2.2.131. If there is a YCS in place for a young carer that YCS will continue to have effect after the young carer reaches their eighteenth birthday until they are provided with an adult carer support plan.

2.2.132. This should not preclude good planning for the young carer, in particular person-centred transition planning to assist young carers moving to adult carer support from young carer support. Early discussions regarding transition reviews can be undertaken by the responsible authority to ensure the young person is prepared and aware in advance of the support that could be in place for them to support them as an adult carer.

2.2.133. It is recommended that these discussions begin about eighteen months to twenty four months in advance of the transition. If transitions are poorly managed and assessments rushed through at the transition point, this could result in care and support that does not appropriately meet the needs of the young carer. This may in turn result in a greater financial implication to the responsible local authority than it would have been if early discussions and planning took place.


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