Carers Legislation - Consultation on Proposals

Chapter 5 Stages and Transitions

Summary

This chapter discusses:

• stages in the experiences of the cared-for person and carer;
• transition from children's services to adult services for young people; and
• transition from being a young carer to adult carer.

We propose provision in law for early planning and the preparation of a Carer's Support Plan (which would take effect if the young carer becomes an adult carer after his or her 18^th birthday).

All other stage and transition issues discussed in this chapter are covered in existing policy and practice, existing legislation or will be covered in future guidance.

Introduction

1) Often the terms 'stages' and 'transitions' are used interchangeably. For the purposes of this consultation we draw a distinction between stages and transitions as follows:

• stages relate to different stages experienced by cared-for people and carers. For example, one new stage relating to cared-for people is the development of a new health condition over and above the one they already have and the management of this. The carer too will often be involved in the management of the conditions. One new stage for carers is caring for more hours each week due to the rapid deterioration in health of the person they are caring for;
• transitions mean transition of service for cared-for people usually required because of the cared-for person's age. The transition is within a service or services especially health, social care and education. It is primarily between children's and adults services for young people.

Stages

2) Carers tell us that they can experience difficulties and challenges at different stages in their caring role. Where these challenges are about managing a change in relation to the person they care for this can have an impact on both the cared-for person and the carer.

3) The impact can be negative causing disruption and upheaval. For example, where the management of new medication for the cared-for person is not handled well by services, this can cause anxiety and stress for both the
cared-for person and the carer.

4) Where there is poor planning before a young adult with learning disabilities moves from home to supported accommodation, the cared-for person and carer can both experience considerable stress.

5) Sometimes the impact is positive in that there is a new and exciting opportunity for the cared-for person, for example, a new volunteering opportunity or paid employment for a disabled young person.

6) Where the planning in relation to a move into supported accommodation is good, the young adult with learning disabilities and carer often look forward to this new phase in both of their lives.

7) Carers and young carers also directly experience different stages of caring. These are many and varied and include:

• managing new equipment and medication for the cared-for person;
• coping with changing relationships;
• dealing with increasingly challenging behaviour;
• a change in the employment status of the carer whilst in the caring role;
• managing their own changing health and personal circumstances; and
• the end of caring.

8) In these circumstances consideration should be given by the carer and the local authority to the appropriateness of an updated Carer's Support Plan for adult carers and Child's Plan for young carers and the provision of support to carers and young carers.

Information Point

As set out in chapter 2 we propose to issue statutory guidance on the Carer's Support Plan which will include guidance for those undertaking the Carer's Support Plan on managing stages of caring. This will apply to adult carers only. Guidance under the Children and Young People (Scotland) Bill on the Child's Plan will include guidance for those undertaking the Child's Plan about managing stages of caring where the carer is a young carer.

Transitions

9) Transitions involving a change in service for young people from children's services to adult services need to be managed well and handled sensitively in a personalised manner. In order to improve outcomes, people need to experience better transitions including the transition from paediatric to adult health services and from children's social work services to adult social work services.

10) It is important that all cared-for people, especially people with complex needs, experience good transitions. Good transition planning also applies of course to people living independently.

Information Point

Some young people, including some disabled young people and some young people with caring responsibilities who are also service users themselves, will need continuing services into adulthood. To help support transition, subject to Parliamentary approval of the Children and Young People (Scotland) Bill, we are proposing to issue statutory guidance under that legislation. This will indicate the type of transition activity that might be required. In the context of a Child's Plan, the longer term outcomes for children and young people should explicitly include issues around transition from children's services into adult services where the absence of planning considerations could have an adverse impact on the young person.

The Named Person^[39] or Lead Professional^[40] for the child, where one has been appointed, should consider whether the wellbeing needs of the child on transition to adult services require a child's planning meeting. Consideration also needs to be given to appointment of a person to manage the Carer's Support Plan on transition to adult services.

Information Point

Self-directed support is an important mechanism for delivering services and has a part to play in transition issues for service users, including disabled children. For example, a budget for young people early on (age 14 or so) would provide them with control over a notional budget (in the form of an individual service fund) or a real budget (in the form of a direct payment) and then would support them to purchase a range of support options with that budget. A good transition involving a SDS approach involves the carers managing integrated support packages with a transparent budget up to the age of 16 and then as the young people reach age 16 to 18 they themselves gradually take control of the budget. One benefit is the opportunity to build the assets and capabilities of the young people by way of a person-centred and outcomes-focused approach.

Please see the work of the Scottish Transitions Forum.^[41] They have also published a report on the role of SDS in helping to improve transitions.^[42]

11) Any transition of cared-for people from adult services to older people's services is different from transition from children's services to adult services as the legal framework within which the local authority supports service users, including cared-for people, does not change at age 65. Indeed in most instances there will be no transition issue as services should be delivered based on need. Younger adults with complex needs might need a similar care package as an older person with such needs. We do recognise however that there are challenges which need addressing. These include providing appropriate services for people who do not conform to what might be termed 'typical patterns,' for example, people over the age of 65 who acquire a physical impairment. The integration of health and social care should help provide the solution.

Young carers who may become adult carers

12) The young person with caring responsibilities may also be receiving support to address a wellbeing need unrelated to caring. And/or they might be receiving support due to the impact of the caring on their wellbeing. We are however working to ensure that caring does not have a detrimental impact on the lives of young carers. Whatever the circumstances, the Child's Plan might include planning, where required, on transition to adult services where the young person with caring responsibilities has a wellbeing need.

13) Some young carers will be supported by the Education (Additional Support for Learning) Act 2004 (as amended) which sets out the action that education authorities must take at various transition points in a child's or young person's school career, including the transition to post-school destinations.^[43] Young carers are also further supported by the Post-16 Transitions Policy and Practice Framework: Supporting all young people to participate in post-16 learning, training or work. This Framework clarifies the expectations for delivery and the roles and responsibilities for the partners involved in supporting all young people in learning and training so as to progress towards and into work.^[44]

14) In order to ease transition from young carer to adult carer - where such transition seems likely to happen - there should be discussions between children's and adult's services, and the young carer, about any need for support as an adult carer. The Child's Plan would be an appropriate place for this to happen where the absence of a transition plan for the move into adult services would impact on the young person's wellbeing. This would be especially so if the lack of transition plan meant that the young person could not anticipate good health or having a life outside of caring. However, not all young carers will have a Child's Plan due to them not all having a wellbeing need justifying the creation of a Plan. It is necessary to ensure appropriate support as an adult carer to enable continued caring (if that is what the carer wants) in good health and to have a life alongside caring.

15) Where a young carer becomes an adult carer, as an adult carer he or she should have a Carer's Support Plan. In order to get this Plan, adult carers need to have discussions with services about the support needed to enable them to carry on caring whilst being able to meet their own aspirations and achieve good personal outcomes.

16) In order to ensure, therefore, that those young carers approaching the age of 18 who are likely to become adult carers receive a Carer's Support Plan to determine any need for support, we intend to make provision in law for dealing with this transition to adult carer. In doing so, we propose that young carers before they turn 18 will have a right to a Carer's Support Plan irrespective of whether or not they are receiving children's services. Whilst the discussions with the young carer would take place before the young carer's 18^th birthday, any agreed support in the Carer's Support Plan would not take effect until the young carer becomes an adult carer. We do not propose a blanket approach that young carers have to be assessed at a certain age. This recognises that the best time to plan the move to support as an adult carer will be different for each young carer.

17) The Child's Plan is the key planning tool for dealing with transition from children's to adult services. If, however, young carers on becoming adult carers need support in their role as providers of services to the people they are caring for, this should be agreed within the context of a Carer's Support Plan. There is early planning for potential support to follow after the young carer's 18^th birthday. The young carer may of course already be getting support prior to their 18^th birthday. This is not adding another tier of planning but ensuring that the planning works well for young carers who might become adult carers.

What Do We Want To Know From You?

Consultation Questions:

Question 12: Should we issue statutory guidance on the Carer's Support Plan which will include guidance for those undertaking the Carer's Support Plan on managing stages of caring? This would apply to adult carers only. (For young carers, practice guidance will be developed to support management of a Child's Plan through the stages of caring).

Question 13: Should new carers' legislation provide for young carers to have a Carer's Support Plan if they seem likely to become an adult carer? Any agreed support recorded in the Carer's Support Plan would be put in place after the young carer becomes a (young) adult carer.