1. Introduction

1. Introduction

Many adults with care and support needs will have life limiting conditions or terminal illnesses. As a result, some adults will inevitably die whilst in the care of services, either in their own home or in a residential or hospital setting.

The prognosis for adults with life limiting or terminal illnesses vary in the timeframes in which they become seriously ill; even those with the same type of illness differ in how they experience symptoms. Some people become ill quickly; others exceed medical predictions of their remaining time. This means all staff need to be responsive to the adult’s changing level of health and consequent care and support needs, as well as those of their carers.

But there should be a shift in focus away from only identifying people who are clearly in the last year of life, and towards having conversations with people about their wishes and preferences for care in the last phase of life at an earlier stage, although their prognosis at that time may be less clear.

Personalised assessment and care planning underpin all care, including care of the terminally ill person, to ensure that people’s individual needs and wishes are understood and followed (see the chapters on Assessment and Care and Support Planning chapters). Dignity and choice are also central to the person’s care, because what is important to each individual in the last phase of their life will be different. Identifying people who may be in the last phase of life and having conversations about their wishes and choices are vital in supporting good, personalised end of life care.

This chapter provides information for staff to ensure adults receive the best possible care to enable them to die peacefully and with dignity, and the needs of their carers, other family members and friends are also met during such a difficult and often distressing time.

2. Addressing Inequalities in End of Life Care

A Different Ending: Addressing Inequalities in End of Life Care Overview Report (Care Quality Commission)

A Different Ending: Addressing inequalities in end of life care Good Practice Case Studies (Care Quality Commission) 

Elderly and End of Life Care for Muslims in the UK (Muslim Council for Britain)

A Second Class Ending: Exploring the Barriers and Championing outstanding End of Life Care for People who are Homeless (Care Quality Commission)

Most people receive care at the end of their life that is of good quality, and is caring and compassionate. There are, however, some people from certain groups who may experience end of life care that is not of a good standard. This can be because commissioners, providers and staff do not always understand or fully consider their specific needs.

Staff need to understand some of the barriers that may prevent people receiving good, personalised care at the end of their life. It is important to ensure that everyone has the same access to high quality, personalised care at the end of their lives, regardless of their diagnosis, age, ethnic background, sexual orientation, gender identity, disability or social circumstances. These include:

• people with conditions other than cancer;
• older people;
• people with dementia;
• people from black and minority ethnic communities;
• groups;
• lesbian, gay, bisexual and transgender people;
• people with a learning disability;
• people with a mental health condition;
• people who are homeless;
• people who are in secure or detained setting;
• Gypsies and Travellers.

A lack of understanding of people’s needs can prevent some people from receiving good end of life care.

Services which either offer a specific service to those at the end of their life or who work more generally with those who are terminally ill, should ensure that they meet the needs of people from all different groups.

3. Approaching the End of Life

Discussing death with adults and their relatives is often difficult. It is a conversation which requires great sensitivity, understanding and experience. This remains so even when an adult is already aware of their prognosis.

Managers should ensure that staff have good communication skills and the support they require to meet people’s individual communication needs. Talking about end of life care as part of wider care and treatment in the last phase of life is fundamental in planning and making choices about care.

It is the responsibility of medical staff – whether the adult’s GP or hospital doctor – to initially inform them and / or their relatives of the diagnosis and prognosis. Doctors often provide an estimate as to how long a person may live, usually at the request of the adult or their family, though it can be difficult to accurately predict when a person will die. Once they have been informed of the likely prognosis, it is the role of other staff – and particularly the adult’s key worker – to support them and their relatives with their care and support needs.

It is vital to allow time to support people in coming to terms with their situation and accept and acknowledge their feelings of loss, anger, fear and depression as normal in the circumstances. Adults need space and time to express their fears and feelings, make plans and say their goodbyes.
Families also need to be supported throughout this period in order to discuss and resolve their concerns, as this is likely to make the experience of being bereaved less painful and reduce the likelihood of suffering severe depression.

Communication with adults and carers should be open and honest, and take place in a private room or in their home environment. Keyworkers or named nurses should be sufficiently experienced before being expected to have such discussions with adults and their relatives (see Section 11, Training and Supporting Staff). Staff who are involved in the adult’s care should be informed of the nature of the conversation and the response of the adult and their relatives. This information should be shared at relevant meetings, including handover periods if the adult is an inpatient. This should ensure that staff involved are kept informed of the adult – and their family’s – feelings and wishes, and are all aware of how best to provide appropriate and individual care and support to the dying person.

Adults who have learning difficulties or neurological problems may have a limited understanding of their illness, prognosis and what doctors and other staff need to tell them. In such circumstances, a best interests assessment should be completed and an independent advocate involved in their care (see Section 5, Consent). A presumption about a lack of capacity should never be made (see Independent Advocacy chapter).

Discussions with adults and their family should be documented in the adult’s case record, particularly if specific wishes or concerns have been expressed. This includes cultural or religious requirements. The key worker / named nurse should always act on such expressions, and related decisions should be communicated to them as soon as possible. Such conversations should include the administration of fluids and nutrition, and medication – particular in relation to relieving pain. It is vital to involve family members in such discussions as these are often issues that cause relatives considerable concern. Clear and open discussions between the adult (where appropriate), relatives and staff – including medical staff – are key to ensuring effective communication and reducing potential distress.

3.1 Do not resuscitate

See Section 4, Do not Resuscitate, Making Advance Decisions chapter for more information.

Everyone has the right to refuse CPR if they do not want to be resuscitated if they stop breathing or their heart stops beating. Where the decision has been made in advance it will be recorded on a specific form special and placed in the patient’s records. It is known as a Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decision, or a DNACPR order. A DNACPR order is not permanent; it can be changed at any time.

3.2 Persons in a vegetative state

The Supreme Court ruled in July 2018 (An NHS Trust and others v Y) that where a person is in a vegetative state, their family will no longer have to consult a judge when deciding to stop their end of life care if the medical team are also in agreement.  Even if the person has not made an advance decision to refuse treatment (see Making Advance Decisions chapter), where the family and medical team agree it is in the person’s best interests, artificial feeding and hydration can be stopped.

4. Priorities for the Dying Person

The priorities for the dying person should focus on the needs and wishes of them and those closest to them, in both the planning and delivery of care whether this be at home, in hospital or in a residential setting.

Whilst they will be individual to the person, the priorities may include:

• the possibility that a person may die within the coming days and hours is recognised and communicated clearly, decisions about care are made in accordance with the person’s needs and wishes, and these are reviewed and revised regularly;
• sensitive communication takes place between staff and the person who is dying and those important to them;
• the dying person, and those identified as important to them, are involved in decisions about treatment and care;
• the people important to the dying person are listened to and their needs are respected;
• care is tailored to the individual and delivered with compassion – with an individual care plan in place.

5. Consent

It should not be assumed that an adult does not have capacity to make their own decisions because they are at the end of their life or dying. The same criteria apply to assessing capacity at this time as at any other point in their life. If there is concern that the adult lacks capacity, a Best Interests assessment should be conducted. If the outcome is that they do lack capacity, an Independent Advocate should be appointed. See also Mental Capacity and Independent Advocacy chapters.

5.1 Best Interests Test

See also Best Interests chapter

The test should be applied in the event that a patient does not have capacity to make their own decision. It applies when the patient loses capacity in accordance with the MCA or through loss of consciousness (temporary or permanent).

At the end of life, many decisions are made on a best interest basis in regard to palliative care and withdrawing treatment.

In the absence of a valid advance decision or health and welfare of a lasting power of attorney (LPA), the decision on which treatment should /or should not be provided rests with the health care professionals, not the relatives.

The health professional must determine what is in the patient’s best interest taking all the relevant circumstances into account; both medical and non-medical.

6. Assessment, Care Planning and Review

Agencies who are involved with the adult will have to undertake specialist assessments in relation to the person’s care and support needs to identify the adult’s needs and any gaps in care that need to be addressed. The assessment process should involve the adult wherever possible, and relevant family members (see also Continuing Health Care chapter). Joint assessments should be undertaken wherever possible, to reduce pressure on the adult and their family. This will also support multi-agency working and information sharing. A carer’s assessment may also be required (see Assessment chapter).

7. End of Life Care Plan

Following an assessment and information which is shared between participating agencies, an end of life care plan should be agreed between the adult, their relatives and the staff involved. This should include the adult’s expected health needs based on professionals’ knowledge of their individual condition/s, any wishes either they or their relatives may have and planning the response for deterioration in the adult’s health.

As well as incorporating the adult’s wishes in relation to their care and support needs, including any religious or cultural requirements whilst they are alive and any forward planning needed concerning mental capacity (see Section 5.4 Forward Planning, Mental Capacity chapter), the care plan should also detail any specific needs of the adult or their family after death. This is particularly important in order to communicate these needs to other members of staff who may care for the adult of their family and who have not been involved in the assessment, care planning or review.

Following discussion with the adult and their relatives (see Section 3, Approaching the End of Life), the end of life care plan should also include reference to fluids, nutrition, pain relief and other medication. Refusal to eat, drink and take medication should be the decision of the adult, not staff (More Care, Less Pathway, Independent Review of the Liverpool Care Pathway, 2013).

The care plan should be reviewed on a four weekly basis with everyone involved, to monitor changes in the adult’s health or circumstances. Once the adult has entered the dying phase – this may be up to 14 days before death – the care plan should be reviewed weekly or daily as is assessed appropriate. It is essential that changes to the care plan as a result of the adult’s health or circumstances are shared with relatives and staff as appropriate – and agreed by the adult, where possible – who are not directly involved in the review of the care plan.

8. Care Coordination

See also NICE End of Life Care Standards.

As soon as a decision has been made as to who the key worker and co-key worker / named nurse are, this should be communicated to the adult, their relatives and all professionals involved in providing care and support. This applies if the adult is at home, in hospital or in a residential setting. If the adult remains at home, they and their family should have all the necessary contact details of staff and services.

The keyworker should ensure that all services and interventions identified in the assessment are delivered to a quality standard, and follow up on any gaps in care, or unsatisfactory service provision.

Feedback on service provision from the adult and their family should inform the care plan review.

9. Care in the Last days of Life

The overall aim of this stage of a person’s life – for everyone involved – is they are able to die with dignity and as comfortably as possible.

Staff providing care and support to the adult should ensure all their needs are being met, and they are satisfied with the services they are receiving. This is in addition to the input of the key worker / co-worker at this time. This also applies to the care and support being provided to family members and any friends who visit.

In hospital or residential settings, thought should also be given to supporting other adults who will be aware of the serious illness and subsequent death of a fellow patient / resident, who may also have become a friend.

10. Care after Death

When an adult dies in a hospital or residential setting, the specific service procedures in relation to action to be taken upon death should be followed.

When the person dies at home, the key worker / named nurse or other first professional in attendance should follow their own service procedures for responding to the death of an adult in the community.

Whatever the setting, these will include obtaining medical confirmation of the death, issue of a death certificate, responding to the needs of relatives – which may include providing information about how to register the person’s death, how to make funeral arrangements and bereavement services – and informing staff from other agencies who have been involved in the adult’s care.

Families should receive support, including allowing and supporting them to be with the deceased person if they so wish.

When a person dies in a hospital or residential setting procedures should also include arrangements for personal property of the deceased and arrangements for removal of the body (this will depend on the circumstances of the person’s death).

11. Training and Supporting Staff

Training in relation to providing and coping with care provision at the end of life should be available for all staff, but particularly for key workers / named nurses and managers. This should enable them to deal more confidently with complex issues that often arise for adults, their relatives and also for other staff, particularly if they have less experience. This, in turn, should ensure the best possible levels of care and support and enable the adult to die peacefully and with dignity, and their relatives to feel supported. Training for staff should include:

• understanding the process of loss, including shock; denial; anger; depression; acceptance;
• communication;
• multi-disciplinary working;
• dealing with difficult situations and breaking bad news;
• recording;
• principles of counselling and family working;
• supervision and reflective practice.

11.1 Reflective practice and supervision

See Supervision chapter

The death of a service user can be a difficult time for staff, especially if the adult and their relatives have been known to staff for some time and with whom they have formed close working relationships. Support should be provided or made available by the service manager and other professional services, as required and necessary.

12. Further Reading

12.1 Relevant chapters

Independent Advocacy

Continuing Health Care (NHS)

Assessment

12.2 Relevant information

Palliative and End of Life Care (NHS)

End of Life Care Standards (NICE)

Bereavement Resources for the Social Care Workforce (Department of Health and Social Care)

Appendix 1: Case Law

Audio & Quick Read Summary

1. Introduction

If  an adult or carer has contacted the local authority for advice or support, or come to the local authority’s attention as a result of a safeguarding concern, they must be actively involved in the assessment and care and support planning processes, and any safeguarding enquiry or safeguarding adult review (SAR). Under the Care Act, the local authority has a legal duty to provide independent advocacy to support the adult through these processes, if they would otherwise have substantial difficulty in being involved (see Section 3.1 Substantial difficulty).

The aim is for the adult’s wishes, feelings and needs to be at the heart of the assessment, care planning and review processes or safeguarding enquiry or SAR.

2. Local Authority Responsibilities to Provide Independent Advocacy

The local authority has a duty to arrange an independent advocate for:

• all adults, as part of their own assessment and care planning and care reviews and to those in their role as carers;
• for adults who are subject to a safeguarding enquiry or SAR.

There are two conditions which need to be met for the provision of an independent advocate:

1. if an independent advocate were not provided the adult would have substantial difficulty in being fully involved in these processes;
2. that there is no appropriate individual available to support and represent the adult’s wishes who is not paid or professionally engaged in providing care or treatment to them or their carer (see also Section 6.1 The role of the appropriate person).

The role of the independent advocate is to support and represent the person and to facilitate their involvement in the key processes and interactions with the local authority and other organisations as required for the safeguarding enquiry or SAR.

2.1 Exceptions

Usually an adult or carer who has substantial difficulty in being involved in their assessment, plan and review, will only be eligible for an advocate where there is no one appropriate to support their involvement.

The exceptions are:

• where conducting an assessment or planning function might result in placement in NHS funded provision in either a hospital for a period exceeding four weeks or in a care home for a period of eight weeks or more, and the local authority believes that it would be in the best interests of the individual to arrange an advocate;
• where there is a disagreement, relating to the individual, between the local authority and the appropriate person whose role it would be to facilitate the individual’s involvement, and the local authority and the appropriate person agree that the involvement of an independent advocate would be beneficial to the individual.

3. Advocacy and the Duty to Involve

Adults must be involved fully in decisions made about them and their care and support or where there is to be a safeguarding enquiry or SAR.

The local authority must help adults to understand how they can be involved, how they can contribute and take part and, where appropriate,  lead or direct the process.

Adults should be active partners in the key care and support processes of assessment, care and support planning, review and any safeguarding enquiries in relation to abuse or neglect. No matter how complex the adult’s  needs, local authorities are required to involve them, to help them express their wishes and feelings, to support them to weigh up options, and to make their own decisions.

This applies in all settings, including people living in the community, in care homes and prisons (with the exception of safeguarding enquiries and SARs).

Many adults  who qualify for advocacy under the Care Act will also qualify for advocacy under the Mental Capacity Act (MCA) 2005. The same advocate can provide support as an advocate under the Care Act and under the MCA. Whichever legislation the advocate is acting under, they should meet the appropriate requirements for an advocate under that legislation.

3.1 Substantial difficulty

The local authority must form a judgement about whether the adult has substantial difficulty in being involved. If it is thought that they do, and that there is no appropriate person to support and represent them, the local authority must arrange for an independent advocate.

3.1.1 Judging ‘substantial difficulty’ in being involved

The Care Act defines four areas in which an adult may experience substantial difficulty:

1. Understanding relevant information: Often adults can be supported to understand relevant information, if it is presented appropriately and if time is taken to explain it. Some adults, however, will not be able to understand relevant information, for example if they have mid-stage or advanced dementia.
2. Retaining information: If the adult is unable to retain information long enough to be able to weigh up options and make decisions, then they are likely to have substantial difficulty in engaging and being involved in the process.
3. Using or weighing the information as part of engaging: The adult must be able to weigh up information, in order to participate fully and choose between options. For example, they need to be able to weigh up the advantages and disadvantages of moving into a care home or leaving an abusive relationship. If they are unable to do this, they will have substantial difficulty in engaging and being involved in the process.
4. Communicating their views, wishes and feelings: The adult must be able to communicate their views, wishes and feelings either by talking, writing, signing or any other means, to aid the decision process and to make their priorities clear. If they are unable to do this, they will have substantial difficulty in engaging and being involved in the process. For example, an adult with mid-stage or advanced dementia, significant learning disabilities, a brain injury or mental ill health may be considered to have substantial difficulty in communicating their views, wishes and feelings.

Within this context, it is the adult’s ability to communicate their views, wishes and feelings which will be key to their involvement rather than the diagnosis or specific condition.

Both the Care Act and the MCA recognise the same areas of difficulty, and both require adults with these difficulties to be supported and represented, either by an appropriate person, an independent advocate or independent mental capacity advocate in order to communicate their views, wishes and feelings (see also Independent Advocacy Case Studies). It is important to note, however, that the adult does not need to lack mental capacity for the involvement of an independent advocate to be considered.

4. When an Independent Advocacy Must be Provided

4.1 Assessment of needs

From the point of first contact, request or referral (including self-referral) for an assessment, the local authority must involve the adult. Practitioners must consider the most appropriate and proportionate way of involving the adult in the assessment processes. In some cases this may be relatively brief, in others it may consist of a series of interviews, in the adult’s own home or other care settings, over a period of time.

The identification of a potential need for advocacy may arise through the process, from the adult themselves, carers or family.

Where the local authority considers that the adult does have substantial difficulty in engaging with the assessment process, then they must consider whether there is anyone appropriate who can support the adult to be fully involved. This might for example be a carer (who is not an employee or is paid), a family member or friend. If there is no one appropriate, the local authority must arrange for an independent advocate who must support and represent the adult in the assessment, care and support planning and the review.

This applies to the following, conducted under the Care Act:

• a needs assessment;
• a carer’s assessment;
• the preparation of a care and support plan or support plan;
• a review of care and support plan or support plan;
• safeguarding processes.

As part of the assessment and the care and support plan, the local authority must consider how to help protect the adult from abuse and neglect, assisting the them to identify any risks and how these can be managed. The local authority must also make sure that any restriction on the adult’s  rights or freedoms are kept to the minimum necessary. Restrictions should be carefully considered and frequently reviewed. Any potential deprivation of liberty must be authorised, either by a Deprivation of Liberty Authorisation by the local authority or the Court of Protection (see Deprivation of Liberty Safeguards chapter).

4.2 NHS Continuing Health Care

See Continuing Healthcare (NHS) chapter

Where it appears that the adult may be eligible for NHS Continuing Healthcare, the local authority must notify the relevant NHS body. NHS CHC is a package of ongoing care that is arranged and funded solely by the NHS because the adult has complex ongoing healthcare needs that are a ‘primary health need’.

Where an adult is not eligible for NHS CHC, the local authority must carry out an assessment of their care and support needs and must meet their eligible needs (see Assessment and Eligibility chapters) and therefore must also consider the need for an independent advocate to support the adult’s  involvement in that assessment.

4.3 Joint care packages

The Care and Support Statutory Guidance applies equally to adults whose needs are being jointly assessed by the NHS and the local authority or where a package of support is, planned, commissioned or funded by both a local authority and an Integrated Care Board (ICB), known as a ‘joint package’ of care.

These processes and arrangements are sometimes difficult for individuals, their carers, family or friends, to understand and be involved in. Local authorities (with ICBs) will therefore want to consider the benefits of providing access to independent advice or independent advocacy for those who do not have substantial difficulty and/or those who have an appropriate person to support their involvement.

4.4 Independent Mental Health Advocate

Under the Mental Health Act (MHA) 1983 ‘qualifying patients’, are entitled to the help and support from an Independent Mental Health Advocate (IMHA).

Section 117 of the MHA places a duty on the NHS and local authorities to provide aftercare (see Section 117 chapter). This will usually involve a joint assessment (often under the Care Programme Approach) including an assessment of the adult’s care and support needs, a care and support or support plan and subsequent review (which may reach a decision that the adult is no longer in need of aftercare).

If the adult does not have a right to an IMHA, but their care  and support needs are being assessed, planned or reviewed they should be considered for an advocate under the Care Act, if they have substantial difficulty in being involved and if there is no appropriate person to support their involvement.

4.5 Safeguarding enquiries and safeguarding adult reviews (SARs)

The local authority must arrange for an independent advocate to support and represent an adult who is the subject of a safeguarding enquiry or a safeguarding adult review (SAR).

Where an independent advocate has already been arranged under the Care Act or under the MCA, unless inappropriate, the same advocate should be used.

Effective safeguarding is about promoting the adult’s rights as well as protecting their physical safety and taking action to prevent the occurrence or reoccurrence of abuse or neglect. It involves enabling the adult to understand any risks of abuse and the actions that they can take, or ask others to take, reduce those risks.

If a safeguarding enquiry needs to start urgently it can begin before an advocate is appointed, but one must be appointed as soon as possible.

Advocacy is especially important in supporting adults through difficult and / or  sensitive processes (such as safeguarding enquiry or a SAR). Both can feel very daunting and involve the sharing of sensitive information which may lead to some difficult decisions. Adults who have been abused or neglected may be demoralised, frightened, embarrassed or upset and the support of an independent advocate will be crucial (see also Independent Advocacy Case Studies).

4.6 Care and support reviews

The local authority must involve the adult, their carer and any other individual that the adult wants to be involved in any review of their care and support plan, and take all reasonable steps to agree any changes (see Care and Support Planning).

Local authorities must consider whether an advocate is required to facilitate the adult’s involvement in the review of a care and support plan and, if appropriate, appoint an advocate. This applies whether or not an advocate was involved at an earlier stage.

Examples of when an advocate may be appointed at this stage if not previously being involved:

• the adult’s ability to be involved in the process without an advocate has changed;
• the circumstances have changed (for example the adults involvement was previously supported by a relative who is no longer able to do so);
• an advocate should have been involved at the care and support planning stage but was not.

5. Continuity of Care and Ordinary Residence

It is the local authority which is carrying out the assessment, planning or review of the plan that is responsible for considering whether an advocate is required. In the case of an adult who is receiving care and support from one local authority but decides to move and live in another authority, the responsibility will move with the care and support assessment. For an adult whose care and support is being provided out of area (in a type of accommodation outlined in the Ordinary Residence chapter, it will be the authority in which the adult is ordinarily resident. Understanding of local communities may be an important consideration, so the advocacy / advocate should wherever possible be from the area where the adult is resident at the time of the assessment, planning or review.

5.1 Consequences for local authorities

The local authority should have policies to clarify the appointing of advocates:

• from advocacy services out of their area that they may not have a direct commissioning relationship with (as it currently is with an Independent Mental Capacity Advocate – IMCA);
• for adults placed out of area temporarily;
• for adults who move from one area to another following an assessment and care and support planning in which an advocate is involved (the same advocate should be involved wherever practicable).

6. Local Authority Decisions

6.1 The role of the appropriate person

An appropriate person should be considered, as soon as the adult’s need for an independent advocate has been identified. An appropriate person is someone who can support the adult to be involved in the decision-making process, such as a family member or friend. For someone to act as an appropriate person, they must not speak on behalf of the adult, but have the skills to maximise their involvement. Positives to consider when family or friends as an appropriate person include:

• they know the adult best;
• they would most likely want to support the adult;
• they will likely be able to support the adult with any speaking or hearing difficulties, for example if the adult uses Makaton but has their own signs for different things.

However, family and friends:

• may not have the necessary skills to maximise the adult’s involvement in the process;
• may find it difficult to take a holistic approach and may only see what they believe is best for the adult;
• may not be wanted by the adult to act as their appropriate person as it may impact the dynamics between them;
• may find it difficult to support the adult they are in crisis and there is a conflict of interest.

When the local authority is considering whether there is an appropriate individual (or individuals) who can facilitate the adult’s involvement in the local authority processes, there are three specific considerations:

1. they cannot be someone who is already providing the adult with care or treatment in a professional capacity or on a paid basis (regardless of who employs or pays for them). For example, the adult’s GP, nurse, key worker or care and support worker;
2. if the adult does not wish to be supported by that individual and they have mental capacity or are competent to consent, their wish should be respected. If the adult has been judged to lack the mental capacity to make a decision, then the local authority must be satisfied that it is in their best interests to be supported and represented by the person. Where an adult does not wish to be supported by a relative, for example, perhaps because they wish to be moving towards independence from their family, then the relative cannot be considered an appropriate person;
3. the appropriate individual is expected to support and represent the adult and to facilitate their involvement in the processes. Some people will not be able to fulfil this role easily, for instance:
   • a family member who lives at a distance and who only has occasional contact with the adult;
   • someone who also finds it difficult to understand the local authority processes;
   • or a housebound parent.

It is not enough to know the adult well or to love them deeply; the role of the appropriate individual is to support the adult’s active involvement with the local authority processes.

Anyone who is implicated in any enquiry of abuse or neglect or have been judged by a SAR to have failed to prevent an abuse or neglect is not suitable to support the adult in any of the processes.

Sometimes the local authority will not know at the point of first contact or at an early stage of the assessment whether there is someone appropriate to assist the adult in engaging. They may need to appoint an advocate and find later that there is an appropriate person in the adult’s own network. The advocate can at that stage ‘hand over’ to the appropriate person. Alternatively, the local authority may agree with the adult, the appropriate person and the advocate that it would be best for the advocate to continue their role, though this is not a specific requirement under the Care Act.

Equally, it is possible that the local authority will consider someone appropriate who may then turn out to have difficulties in supporting the adult to engage and be involved in the process. The local authority must at that point arrange for an advocate.

There may also be some cases where the local authority considers that an adult needs the support of both a family member and an advocate; perhaps because the family member can provide a lot of information but not enough support, or because while there is a close relationship, there may be a conflict of interest with the relative, for example in relation to inheritance of the home.

If the local authority decides it must appoint an independent advocate as the adult does not have friends or family who can facilitate their involvement, the local authority must still consult with those friends or family members when the adult asks them to.

It is the local authority’s decision as to whether a family member or friend can act as an appropriate person to support the adult’s involvement, and to communicate this decision to their friends and family as necessary.

Where two people in the same household are being assessed, and all parties agrees and the local authority is satisfied there is not conflict of interest, they may have the same advocate.

6.2 Who can act as an advocate?

Advocates must have:

• a suitable level of appropriate experience: this may, for example, be in non-instructed advocacy (for adults who do not have the mental capacity to instruct the advocate) or in working with adults who may have substantial difficulty in engaging with assessments and care and support planning;
• appropriate training: this may, for example, initially be training in advocacy (non-instructed and instructed) or dementia, or working with adults with learning disabilities. Once appointed, all independent advocates should be expected to work towards the National Qualification in Independent Advocacy (level 3) within a year of being appointed, and to achieve it in a reasonable amount of time
• competency: this will require the advocacy organisation assuring itself that the advocates who work for it are all competent and have regular training and assessment
• integrity and good character: this might be assessed through: interview and selection processes; seeking and scrutinising references prior to employment and ongoing DBS checks (see Disclosure and Barring Service chapter).
• the ability to work independently of the local authority or body carrying out assessments, planning or reviews on the local authority’s behalf: this includes the ability to make a judgement about what an adult is communicating and what is in the adult’s best interests, as opposed to in a local authority’s best interests, and to act accordingly to represent this;
• supervision: this will require that the advocate meets regularly and sufficiently frequently with a person with a good understanding of independent advocacy who is able to guide their practice and develop their competence.

The Advocacy Quality Performance Mark (QPM) is a tool for providers of independent advocacy to show their commitment and ability to provide high quality advocacy services.

To prevent potential conflict of interest, the independent advocate must not be working for the local authority, or for an organisation that is commissioned to carry out assessments, care and support plans or reviews for the local authority unless the potential conflict of interests is adequately addressed within the organisation’s structure.

In certain circumstances, in addition to their role under the Care Act, an advocate may assist an individual to develop their own care or support plan if requested to by the individual, but they cannot authorise the support plan or approve care and support plans or reviews on behalf of the authority. Nor can an advocate be appointed if they are providing care or treatment to the individual in a professional or a paid capacity.

7. Role of the Independent Advocate

The advocate will decide the best way of supporting and representing the adult they are advocating for, always taking into account their wellbeing and interests (including their views, beliefs and wishes). This may involve creative approaches, for example, supporting someone to show a film to help explain their needs, wishes or preferences (see also Independent Advocacy Case Studies).

In addition, where practicable, they should meet the adult in private. Where the adult  has mental capacity, the advocate should ask for and obtain their written consent to look at their records and to talk to their carer, family, friends, care or support worker and others who can provide information about their needs and wishes, their beliefs and values. Otherwise, the advocate should consult the records and the family and others as appropriate, but ask the family and others only where the advocate considers this is in the adult’s best interests.

The Care Act allows advocates to examine and take copies of relevant records in certain circumstances. This mirrors the powers of an Independent Mental Capacity Advocate.

Acting as an advocate is a responsible position. It includes:

• assisting the adult to understand the assessment, care and support planning and review and safeguarding processes. This requires advocates to understand local authority policies, and other agencies roles, and processes, the available assessment tools, the planning options, and the options available at the review of a care or support plan are required and good practice in safeguarding enquiries and SARs. It can involve advocates spending considerable time with the adult, understanding their communications needs, their wishes and feelings and their life story, and using all this to assist them to be involved and where possible to make decisions;
• assisting the adult to communicate their views, wishes and feelings to the staff who are carrying out an assessment or developing a care or support plan or reviewing an existing plan or to communicate their views, wishes and feelings to the staff who are carrying out safeguarding enquiries or reviews;
• assisting the adult to understand how their needs can be met by the local authority or otherwise – understanding for example how a care and support and support plan can be personalised, how it can be tailored to meet specific needs, how it can be creative, inclusive, and how it can be used to promote the adult’s rights to liberty and to family life;
• assisting the adult to make decisions about their care and support arrangements – assisting them to consider the different care and support options and to choose the ones that best meet their needs and wishes;
• assisting the adult to understand their rights under the Care Act – for an assessment which considers their wishes and feelings and which considers the views of other people; their right to have their eligible needs met, and to have a care or support plan that reflects their needs and their preferences, and in relation to safeguarding, understanding their right to have their concerns about abuse taken seriously and responded to appropriately. Also assisting the adult to understand their wider rights, including their rights to liberty and family life;
• assisting the adult to challenge a decision or process made by the local authority; and where the adult cannot challenge the decision even with assistance, then to challenge it on their behalf.

Benefits of independence advocacy, include:

• the adult feels empowered;
• their wishes and feelings are heard;
• supporting joined up working between all involved;
• it uses a strengths-based way approach and helps the adult feel more in control of their life.

7.1 Safeguarding issues

In terms of safeguarding there are some particular important issues for advocates to address. These include assisting the adult to:

• decide what outcomes / changes they want;
• understand the behaviour of others that are abusive / neglectful;
• understand which actions of their own may expose them to avoidable abuse or neglect;
• understand what actions that they can take to safeguard themselves;
• understand what advice and help they can expect from others, including the criminal justice system;
• understand what parts of the process are completely or partially within their control;
• explain what help they want to avoid reoccurrence and also recover from the experience.

7.2 Representing the adult

There will be times when an advocate may have concerns about how a local authority has acted, the decisions that have been made or the outcomes proposed. The advocate must write a report outlining their concerns for the local authority. The local authority and the advocate should meet to consider the concerns. The local authority should provide a response in writing afterwards.

Where the adult does not have mental capacity, or is not otherwise able, to challenge a decision, the advocate must do so where they believe the decision is inconsistent with the local authority’s duty to promote the adult’s wellbeing.

Where an adult has been assisted and supported and nevertheless remains unable to make their own representations or their own decisions, the advocate must use what information they have to make representations on their behalf.

This means the advocate should put the case on the adult’s behalf, scrutinise the options, question the plans if they do not appear to meet all eligible needs or do not meet them in a way that fits with the adult’s wishes and feelings, or are not the least restrictive option, and to challenge local authority decisions where necessary.

The ultimate goal of this representation is to secure the adult’s rights, promote their wellbeing and ensure that their wishes are taken fully into account.

8. The Role of the Local Authority in Supporting the Advocate

An advocate’s duty is to support and represent people who have substantial difficulty in engaging with the local authority processes, therefore the local authority must take into account any representations made by an advocate. A written response should be provided to a report from an advocate which raises concerns about how the local authority has acted or what decision has been made or what outcome is proposed. The local authority should understand that the advocate’s role incorporates ‘challenge’ on behalf of the individual.

The local authority is responsible for ensuring that the relevant staff are aware of the advocacy service and the authority’s duty to provide such services.

The local authority should take reasonable steps to assist the advocate in carrying out their role by informing other agencies that an advocate is supporting the adult and facilitating access to them and their records. The completion of an assessment and care and support planning should allow time for the advocate to take into consideration the needs of the adult’s family, friends or paid staff. The local authority should keep the advocate informed of any developments and of the outcome of the assessment and the care and support plan.

The local authority may make reasonable requests of the advocate for information or for meetings both in relation to the adult and the advocate’s work more generally, and the independent advocate should comply with these.

9. Further Reading

9.1 Relevant chapters

Mental Capacity

Assessment

Care and Support Planning

Independent Mental Capacity Advocate Service

10.2 Relevant information

Chapter 7, Independent Advocacy, Care and Support Statutory Guidance (Department of Health and Social Care)

Advocacy Services for Adults with Health and Social Care Needs (NICE)

Independent Advocacy (SCIE)

Independent Advocacy Case Studies, Resources

ePractice

Audio & Quick Read Summary

1. Introduction

Transition is the term used to describe the process by which young people and their families move from services they have received as a child into those that they need when they become an adult.

The main three elements of the Care Act 2014 in relation to the transition from children’s to adult services are:

• the duty to assess;
• trigger for when an assessment should occur;
• transition planning.

Person-centred transition planning is essential to help young people and their families prepare for adulthood. Transition to adult care and support comes at a time of great change in a young person’s life. It can also mean changes to the care and support they receive from education, health and care services, and involvement with new agencies such as those providing support for housing, employment or further education and training.

Issues which are important to young people approaching adulthood, and their families, may include:

• paid employment;
• good health;
• completing exams or moving to further education;
• independent living (choice and control over one’s life and good housing options);
• building friendships and relationships.

The wellbeing of each young person or carer must be taken into account so that assessment and planning is based around the individual needs, wishes, and outcomes which matter to that person (see Promoting Wellbeing).

Early conversations and planning provide an opportunity for young people and their families to reflect on their strengths, needs and desired outcomes, and to plan ahead for how they will achieve their goals.

Professionals from different agencies, families, friends and the wider community should work together with the young person and / or carer to help achieve the outcomes that matter to them.

The purpose of carrying out transition assessments is to provide young people and their families with information so that they know what to expect in the future and can prepare for adulthood.

2. Definitions

The Care Act 2014 contains provisions to help preparation for adulthood for three  particular groups – children, young carers and child’s carers.

• Child / young person: in the context of this chapter, a child is most probably a young person in their teenage years preparing for their adult life. This chapter therefore uses the term ‘young person’ for people under 18 with care and support needs who are approaching transition, rather than the term ‘child’.
• Young carer: a young carer under 18 preparing for adulthood themselves.
• Adult carer: an adult carer of a young person preparing for adulthood, this is equivalent to the term ‘child’s carer’ in the Care Act.
• Young person or carer: this is the general term in the chapter for all three groups – young people, adult carers and young carers. Where something does not apply to all three groups, the specific groups to whom it does apply will be specified.
• Transition assessment: each group has their own specific transition assessment; a child’s needs assessment, a young carer’s assessment, and a child’s carer’s assessment. The term used in this chapter for all three is ‘transition assessment’.
• Likely need: the duty to conduct a transition assessment applies when someone is likely to have needs for care and support (or support as a carer) under the Care Act when they or the person they care for transitions to the adult system.
• Significant benefit: a transition assessment must be conducted for all those who have likely needs, however the timing of this assessment will depend on when it is of significant benefit to the young person or carer. This will generally be at the point when their needs for care and support as an adult can be predicted reasonably confidently, but will also depend on a range of other factors (see Section 3, ‘When a transition assessment must be carried out).

The Children Act 1989 gives local authorities a number of duties in relation to children up to the age of 18 years. This includes children who are ‘looked after’ and ‘children in need’. Children who are looked after are usually subject to a care order or accommodated by the local authority under section 20, while children in need are entitled to services but not usually to the same degree of support as those looked after where the local authority may share parental responsibility. Children in both groups may transition from children’s to adults’ services.

3. When a Transition Assessment must be Carried Out

Transition assessments should take place at the right time for the young person or carer and at a point when the local authority can be reasonably confident about what the young person’s or carer’s needs for care or support will look like after the young person in question turns 18. There is no set age when young people reach this point; every young person and their family will be different, meaning transition assessments should take place when it is most appropriate for them.

The local authority must carry out a transition assessment of anyone in the three groups when there is significant benefit to the young person or carer in doing so, and if they are likely to have needs for care or support after turning 18. The provisions in the Care Act relating to transition cover anyone who is likely to have needs for adult care and support after turning 18, not just those who have received services from children’s social care.

If a young person or carer is ‘likely to have needs’ this means they may have any need for care and support as an adult. These needs are not just those which are deemed eligible under the Care Act. It is highly likely that young people and carers who are in receipt of children’s services would be ‘likely to have needs’ in this context, and local authorities should therefore carry out a transition assessment for those who are receiving children’s services as they approach adulthood, so that they have information about what to expect when they become an adult.

Transition assessments and plans may also apply to a young person placed in secure accommodation, because they have a history of absconding or risk taking behaviours which may  harm themselves or others. The reason why they are in secure accommodation, the age they are at discharge, their progress while they are there and the length of time they were there, are all factors that may need to be included in the transition assessment.

4. Significant Benefit

When considering if it is of ‘significant benefit’ to assess, the local authority should consider the circumstances of the young person or carer, and whether it is an appropriate time for the young person or carer to undertake an assessment which helps them to prepare for adulthood.

The consideration of ‘significant benefit’ is not related to the level of a young person or carer’s needs, but rather to the timing of the transition assessment.

When considering whether it is of significant benefit to assess, a local authority should consider factors which may contribute to establishing the right time to assess (including but not limited to the following):

• the stage they have reached at school and any upcoming exams;
• whether the young person or carer wishes to enter further / higher education or training;
• whether the young person or carer wishes to get a job when they become a young adult;
• whether the young person is planning to move out of their parental home into their own accommodation;
• whether the young person will have care leaver status when they become 18;
• whether the carer of a young person wishes to remain in or return to employment when the young person leaves full time education;
• the time it may take to carry out an assessment;
• the time it may take to plan and put in place the adult care and support;
• any relevant family circumstances;
• any planned medical treatment/

For young people with special educational needs (SEN) who have an education, health and care (EHC) plan under the Children and Families Act 2014, preparation for adulthood must begin from year 9 – see Special Educational needs & Disability (SEND) Code of Practice ‘Preparing for Adulthood’. The transition assessment should be undertaken as part of one of the annual statutory reviews of the EHC plan, and should inform a plan for the transition from children’s to adult care and support.

The SEND Code of Practice states that local authorities must minimise disruption to the child and their family – for example by combining multiple appointments where possible. Local authorities should seek to agree the best time for assessments and planning with the young person or carer, and where appropriate, their family and any other relevant partners.

For looked after children who are leaving care, the local authority should consider using the statutory Pathway Planning process as the opportunity to carry out a transition assessment where appropriate. See Children Act 1989: Care Planning, Placement and Case Review (Statutory Guidance about Local Authority Support to Children and Families).

Local authorities have a duty to provide support through a personal advisor to all care leavers up to age 25, if they want this support. The personal advisor acts as a focal point for the young person, ensuring that they are provided with the practical and emotional support they need as they enter adulthood. including helping the young person to build a positive social network.

In complex cases, it can take some time to carry out the assessment and plan and put in place the necessary care and support. Social workers will often be the most appropriate lead professionals for complex cases.

Where it is judged by the local authority that the young person or carer is likely to have needs for care and support after turning 18, but that it is not yet of significant benefit to carry out a transition assessment, the local authority should consider indicating (when providing its written reasons for refusing the assessment) when it believes the assessment will be of significant benefit. In these circumstances, the onus is on the local authority to contact the young person or carer to agree the timing of the transition assessment, rather than leaving the young person or carer in uncertainty or having to make repeated requests for an assessment. (See also Transitions Case Studies.)

5. Requests for Transition Assessment

A young person or carer, or someone acting on their behalf, has the right to request a transition assessment. The local authority must consider such requests and whether the likely need and significant benefit conditions apply – and if so it must undertake a transition assessment.

6. Refusal of Transition Assessment

If the local authority thinks these conditions do not apply and refuses an assessment on that basis, it must provide its reasons for this in writing in a timely manner, and it must provide information and advice on what can be done to prevent or delay the development of needs for support.

Where someone is refused (or they themselves refuse) a transition assessment, but later makes a request for an assessment, the local authority must again consider whether the likely need and significant benefit conditions apply, and carry out an assessment if so.

7. Identifying Young People and Young Carers who are not already receiving Children’s Services

Most young people who receive transition assessments will already be known to the local authority children’s service.

However, local authorities should consider how they can identify young people who are not receiving children’s services but who are likely to have care and support needs as an adult. Examples include:

• young people with degenerative conditions;
• young people (for example those who are autistic) whose needs have been largely met by their educational institution, but who once they leave, will require their needs to be met in some other way;
• young people detained in the youth justice system who will move to the adult prisons;
• young carers whose parents have needs below the local authority’s eligibility threshold but may nevertheless require advice or support to fulfil their potential, for example a child with deaf parents who is undertaking communication support;
• young people and young carers receiving Children and Adolescent Mental Health Services (CAMHS) may also require care and support as adults even if they did not receive children’s services from the local authority.

Even if they are not eligible for services, a transition assessment with good information and advice about support in the community can be helpful for young people in these groups.

8. Adult Carers and Young Carers

Preparation for adulthood will involve assessing how the needs of young people change as they approach adulthood and also how carers’, young carers’ and other family members’ needs might change over time.

The local authority must assess the needs of an adult carer where there is a likely need for support after the child turns 18 and it is of significant benefit to the carer to do so. For instance, some carers of disabled children are able to remain in employment with minimal support while the child has been in school. However, once the young person leaves education, it may be the case that the carer’s needs for support increase, and additional support and planning is required from the local authority to allow the carer to stay in employment.

The SEND Code of Practice sets out the importance of full time programmes for young people aged 16 and over. For instance, some sixth forms or colleges offer five day placements which allow parents to remain in employment full time. However, for young people who do not have this opportunity, for example if their college offers only three  day placements, transition assessments should consider if there is other provision and support for the young person such as volunteering, community participation or training which not only allows the carer to remain in full time employment, but also fulfils the young person’s wishes or equips them to live more independently as an adult (see SEND Code of Practice – chapter 8 on preparation for adulthood).

The local authority must also assess the needs of young carers as they approach adulthood. For instance, many young carers feel that they cannot go to university or enter employment because of their caring responsibilities. Transition assessments and planning must consider how to support young carers to prepare for adulthood and how to raise and fulfil their aspirations.

The local authority must consider the impact on other members of the family (or other people the authority may feel appropriate) of the person receiving care and support. This will require the authority to identify anyone who may be part of the person’s wider network of care and support. For example, caring responsibilities could have an impact on siblings’ school work, or their aspirations to go to university. Young carers’ assessments should include an indication of how any care and support plan for the person/s they care for would change as a result of the young carer’s change in circumstances. For example, if a young carer has an opportunity to go to university away from home, the local authority should indicate how it would meet the eligible needs of any family members that were previously being met by the young carer.

9. What the Transition Assessment should Cover

The transition assessment should support the young person and their family to plan for the future, by providing them with information about what they can expect. All transition assessments must include an assessment of:

• current needs for care and support and how these impact on wellbeing;
• whether the child or carer is likely to have needs for care and support after the child in question becomes 18;
• if so, what those needs are likely to be, and which are likely to be eligible needs;
• the outcomes the young person or carer wishes to achieve in day to day life and how care and support (and other matters) can contribute to achieving them.

Transition assessments for young carers or adult carers must also specifically consider whether the carer:

• is able to care now and after the child in question turns 18;
• is willing to care now and will continue to after 18;
• works, or wishes to do so;
• is or wishes to participate in education, training or recreation.

The same requirements and principles apply for carrying out transition assessments as for other needs assessments under the adult statute (see Assessment).

For example, assessments must include an assessment of the outcomes, views and wishes that matter to the child or carer in question, and an assessment of their strengths and capabilities.

The young person or carer in question must be involved in the assessment for it to be person centred and reflect their views and wishes. The assessment must also involve anyone else who the young person or carer wants to involve in the assessment. For example, many young people will want their parents involved in their process.

Transition assessments should be carried out in a reasonable timescale. Local authorities should inform the young person or carer of an indicative timescale over which the assessment will be conducted and keep them informed.

While like all assessments transition assessments must identify all a person’s needs for care and support, they should be proportionate to that person’s needs. For someone with a low level of need, an assessment might be light touch, but in many cases, more thorough examination will be required to establish a person’s needs fully.

Transition assessments should consider the immediate short term outcomes that a child or carer wants to achieve as well as the medium and longer term aspirations for their life. Progress towards achieving outcomes should be monitored.

EHC plans must be person centred, and must focus on preparation for adulthood from Year 9. Therefore, for young people with EHC plans, transition assessments should build on the plans which will already contain information about the person, their aspirations and progress towards achieving their desired outcomes.

Similarly, for young people and carers who do not have an EHC plan, but who already have other plans under children’s legislation, the transition assessment should build on existing information.

10. Mental Capacity

See also Mental Capacity chapter

In all cases, the young person or carer in question must agree to the assessment where they have mental capacity and are competent to agree. Where a young person or carer lacks mental capacity or is not competent to agree, the local authority must be satisfied that a transition assessment is in their best interests. Everyone has the right to refuse a transition assessment, however the local authority must undertake an assessment regardless if it suspects that a child is experiencing or at risk of abuse or neglect.

The right of young people to make decisions is subject to their capacity to do so as set out in the Mental Capacity Act 2005. (The MCA only applies to those over the age of 16, who lack mental capacity.) The underlying principle of the Act is to ensure that those who lack capacity are supported to make as many decisions for themselves as possible, and that any decision made or action taken on their behalf, is done so in their best interests. This is a necessity if the transition assessment is to be person centred.

For 17 and 18 year olds who lack mental capacity, the Family Court and the Court of Protection (CoP) can make best interests decisions on their behalf. The CoP can make best interest decisions around placements, care and support packages, contact arrangements and the young person’s relationships.  Cases may be transferred from the Family Court to the CoP in appropriate circumstances and back again to the Family Court.

For young people below the age of 16, local authorities will need to establish a young person’s competence using the test of ‘Gillick competence’ (whether they are able to understand a proposed treatment or procedure). Where the young person is not competent, a person with parental responsibility will need to be involved in their transition assessment, – or an independent advocate provided if there is no one appropriate to act on their behalf (either with or without parental responsibility).

The Mental Health Act 1983 applies to people of all ages who are suffering from a mental illness and are entitled to receive the appropriate support.
The Autism Act 2009 provides specific guidance that should be followed by local authorities and the NHS, which relates to planning services for an autistic child who is transitioning from children’s to adults’ services.

11. Independent Advocacy

The Care Act places a duty on local authorities to provide an independent advocate to facilitate the involvement in the transition assessment where the person in question would experience substantial difficulty in understanding the necessary information or in communicating their views, wishes and feelings – and if there is nobody else appropriate to act on their behalf (see Independent Advocacy). This duty applies for all young people or carers who meet the criteria, regardless of whether they lack mental capacity as defined under the Mental Capacity Act 2005.

12. Combined Assessments

The local authority may combine a transition assessment with any other assessment it is carrying out, or it may carry out assessments jointly with, or on behalf of, another organisation. All such cases must meet the consent condition around mental capacity or the competence condition set out above. For example, transition assessments should be combined with existing EHC assessments unless there are specific circumstances to prevent it.

The power to join up assessments also applies, so for example if an adult is caring for a 17 year old in transition and a 12 year old, the local authority could combine:

• the child’s needs assessment of the 17 year old under the Care Act;
• any assessment of the 17 year old’s needs under section 17 of the Children Act;
• any assessment of the 12 year old’s needs under section 17 of the Children Act;
• the child’s carer’s assessment of the adult under the Care Act;
• the parent carer assessment of the adult under the Children and Families Act.

13. Information and Advice

Information and advice must be accessible and proportionate to whoever needs it and must consider individual circumstances. For example when providing information and advice to young people and young carers, it is often more effective if information is given face to face from a trusted source, such as the young person’s care coordinator.

The Children and Families Act 2014 requires local authorities to publish a local offer, which includes provision of information and advice for children’s social care in their local area, including specific requirements for young people who are preparing for adulthood (see chapter 4 of SEND Code of Practice). The Care Act places a similar duty on local authorities to provide information and advice about adult care and support (see Information and Advice).

Given the similar requirements on both children and adult services to provide information and advice that is easily accessible, local authorities should consider jointly commissioning and delivering their information and advice services for both children’s and adult care and support as part of their requirement to work together to smooth the transition between children and adult services.

Transition assessments will often represent a very different context to that which the person is accustomed, so ensuring that people have general information and advice about adult care and support will sometimes be a prerequisite for giving more detailed information and advice. For example, the right to self-assessment applies as with other assessments under the Care Act (see Assessment), however there is the important caveat that for children, the local authority must ensure that a self-assessment is appropriate. This means for example ensuring that a young carer conducting a self-assessment is clear about the support available both to them and the person(s) they care for, avoiding a situation where the young carer assumes the default of continuing in the same caring role through ignorance of other options.

14. Information Sharing

When sharing information with a young carer about the person they care for a supported self-assessment during transition, the local authority must be satisfied that it is appropriate for the young carer to have the information. They must have regard to all circumstances in taking this decision, especially the age of the young carer, however each case will be different and there is no one age at which a young carer is necessarily old enough to receive information. The local authority must ensure that the adult consents to have their information shared in this way.

15. Cooperation between Professionals and Organisations

People with complex needs for care and support may have several professionals involved in their lives, and numerous assessments from multiple organisations. For children with special educational needs, the Children and Families Act 2014 brings these assessments together into a coordinated EHC plan (see SEND Code of Practice, Chapter 9).

Local authorities must cooperate with relevant partners, and this duty is reciprocal (see Integration, Cooperation and Partnerships). This includes an explicit requirement which states that children and adult services must cooperate for the purposes of transition to adult care and support. Often, staff working in children’s services will have built relationships and knowledge about the young person or carer in question over a number of years. As young people and carers prepare for adulthood, children’s services and adults’ services should work together to pass on this knowledge and build new relationships in advance of transition.

The local authority should have a clear understanding of their responsibilities, including funding arrangements, for young people and carers who are moving from children’s to adult services. Disputes between different departments within a local authority about who is responsible can be time consuming and can sometimes result in disruption to the young person or carer.

The local authority must also cooperate with relevant external agencies including local GP practices, housing providers and educational institutions. Again, this duty is reciprocal. This cooperation is crucial to help ensure that assessments and planning are person centred. Furthermore, local health services or schools are vital to identifying young people and carers who may not already be in contact with local authorities.

It can be frustrating for children and families who have to attend multiple appointments for assessments, and who have to give out the same information repeatedly. The SEND Code of Practice highlights the importance of the ‘tell us once’ approach to gathering information for assessments and this will be important in other contexts as well. The local authority should consult with the young person and their family to discuss what arrangements they would prefer for assessments and reviews.

All relevant partners should be involved in transition planning where they are involved in the person’s care and support.

Equally, the local authority should be involved in transition planning led by another organisation, for example a child and adolescent mental health service, where there are also likely to be needs for adult care and support.

Agencies should agree how to organise transition assessments so that all the relevant professionals are able to contribute. For example, this might involve arranging a multi-disciplinary team meeting with the young person or carer. However, it may not always be possible for all the professionals from different agencies to be present at appointments, but they should still be enabled to contribute. Transition assessments must be person centred, which means that contributions by different agencies should reflect the views of the person to whom the assessment relates.

15.1 Care coordination

Many people value having one designated person who coordinates assessments and transition planning across different agencies, and helps them to navigate through numerous systems and processes that can sometimes be complicated.

Often there is a natural lead professional involved in a young person’s care who fulfils this role and the local authority should consider formalising this by designating a named person to coordinate transition assessment and planning across different agencies, and may also wish to consider setting up specialist posts carry out this coordination function for people who are preparing for adulthood.

This coordinating role, sometimes referred to as a ‘key working’ or ‘care coordination’, can not only help to deliver person centred, integrated care, but can also help to reduce bureaucracy and duplication for local authorities, the NHS and other agencies. Care coordinators are also often able to build close relationships with young people and families and can act as a valuable provider of information and advice both to the families and to local authorities. Care leavers will have Personal Advisors to provide support, for example by providing advice or signposting the young person to services who will be a natural lead in many cases to coordinate a transition from children’s to adult care and support where relevant (see also Transitions Case Studies).

16. Eligibility

Having carried out a transition assessment, the local authority must give an indication of which needs are likely to be eligible needs (and which are not likely to be eligible) once the young person in question turns 18, to ensure that the young person or carer understands the care and support they are likely to receive and can plan accordingly.

There is a particularly important role for local authorities in ensuring that young people and carers understand their likely situation when they reach adulthood. The different systems for children’s and adult care and support mean that there will be circumstances in which needs that were being met by children’s services may not be eligible needs under the adult system.

Adult care and support is subject to means testing and charging (see Eligibility).

It is critical that families are able to understand what support they are likely to receive when the young person or carer is in the adult system, and that the transition period is planned and managed as far in advance as is practical and useful to the individual to ensure that there is not a sudden gap in meeting the young person’s or carer’s needs.

Where the transition assessment identifies needs that are likely to be eligible, local authorities should consider providing an indicative personal budget, so that young people, carers and their families are able to plan their care and support before entering the adult system (see SEN code of practice for further information about right to a personal budget for people with EHC plans, and Personal Budgets).

For any needs that are not eligible under the adult statute, local authorities must provide information and advice on how those needs can be met, and how they can be prevented from getting worse.

17. Transition Plans

The local authority and relevant partners should consider building on a transition assessment to create a person-centred transition plan that sets out the information in the assessment, along with a plan for the transition to adult care and support, including key milestones for achieving the young person or carer’s desired outcomes.

An advantage of a transition plan is that it is easier to update and refine without undertaking a new assessment – transition assessments and plans should be reviewed regularly to take account of changes both in circumstances and desired outcomes.

The priorities of young people and young carers will often change a lot during their adolescent years, and plans should be updated frequently enough to reflect this.

The local authority should also accept reasonable requests from young people and their families to review transition plans (see Review of Care and Support Plans).

In the case of an adult carer, if the local authority has identified needs through a transition assessment which could be met by adult services, it may meet these needs under the Care Act in advance of the child being cared for turning 18.

In deciding whether to do this the local authority must have regard to what support the adult carer is receiving under children’s legislation.

If the local authority decides to meet the adult carer’s needs through adult services, as for anyone else under the adult legislation, the adult carer must receive a support plan and a personal budget – as well as a financial assessment if they are subject to charges for the support they will receive (see Care and Support Planning, Personal Budgets and Charging and Financial Assessment).

A local authority may not meet adult carer’s needs for support under section the Care Act by providing care and support to the child cared for – this will always happen under children’s legislation.

18. Planning and Commissioning Age Appropriate Local Services and Resources

The Care Act requires local authorities to arrange preventative services, and to ensure a diverse range of quality providers of care and support in their local area. There are similar requirements in relation to the Local Offer in the Children and Families Act (see Market Shaping and Commissioning of Adult Care and Support).

Promoting a local market that offers a choice of high quality services will include taking into account the needs of young people and young carers transferring from children’s services after turning 18.

In order to prepare to live independently as adults, many young people leaving full time education will require different types of care and support to that which is typically provided to children or older people. For young adults with care and support needs or young adult carers, this might include things such as advice on housing options, support to help them live in their own home or job training.

Given the clear similarities in the statutory requirements under both Acts, local authorities should consider jointly planning and commissioning these services where there is potential to make better use of resources.

It can cause significant disruption to young people and their families if they would prefer to stay local but are forced to travel out of area due to lack of adequate local provision. This will also often result in high transport costs and high costs of out of area placements.

19. Moving to Adult Care after the Young Person or Carer turns 18

There is no obligation on the local authority to move from children’s social care to adult care and support as soon as someone turns 18.

Very few moves will take place on the day of someone’s 18th birthday.

For the most part, the move to adult services begins at the end of a school term or another similar milestone, and in many cases should be a staged process over several months or years.

Prior to the move taking place, the local authority must decide whether to treat the transition assessment as a needs or carers assessment under the Care Act (see Assessment).

In making this decision the local authority must take into account when the transition assessment was carried out and whether the person’s circumstances have changed.

If the local authority will meet the young person’s or carer’s needs under the Care Act after they have turned 18 (based either on the existing transition assessment or a new needs assessment if necessary), the local authority must then undertake the care planning process as for other adults – including creating a care and support plan and producing a personal budget (see Care and Support Planning and Personal Budgets).

The local authority should ensure that this happens early enough that a package of care and support is in place at the time of transition.

20. Combining EHC Plans and Care and Support Plans after the age of 18

Where young people aged 18 or over continue to have EHC plans under the Children and Families Act 2014, and they make the move to adult care and support, the care and support aspects of the EHC plan will be provided under the Care Act. The statutory care and support plan must form the basis of the ‘care’ element of the EHC plan (see Care and Support Planning).

Under the Children and Families Act, EHC plans must clearly set out the care and support which is reasonably required by the learning difficulties and disabilities that result in the young person having SEN.

For people over 18 with a care and support plan, this will be those elements of their care and support which are directly related to their SEN.

EHC plans may also include other care and support that is in the care and support plan, but the elements that are directly related to SEN should always be clearly marked out separately as they will be of particular relevance to the rest of the EHC plan.

21. Continuity of Care after the age of 18

Young people and their carers have sometimes faced a gap in provision of care and support when they turn 18, and this can be distressing and disruptive to their lives.

The local authority must not allow a gap in care and support when young people and carers move from children’s to adult services.

If transition assessment and planning is carried out as it should be, there should not be any gap in provision of care and support.

However, if adult care and support is not in place on a young person’s 18th birthday, and they or their carer have been receiving services under children’s legislation, the local authority must continue providing services until the relevant steps have been taken, so that there is no gap in provision.

The ‘relevant steps’ are if the local authority:

• concludes that the person does not have needs for adult care and support;
• concludes that the person does have such needs and begins to meet some or all of them (the local authority will not always meet all of a person’s needs – certain needs are sometimes met by carers or other organisations);
• concludes that the person does have such needs but decides they are not going to meet any of those needs, for instance, because their needs do not meet the eligibility criteria under the Care Act 2014 (see Eligibility).

In order to reach such a conclusion, the local authority must have conducted a transition assessment (that they will use as a needs or carers assessment under the adult statute).

Where a transition assessment was not conducted and should have been (or where the young person’s circumstances have changed), the local authority must carry out an adult needs or carer’s assessment (see Assessment).

In the case of care leavers, the Staying Put Guidance (HM Government, 2013) states that local authorities may choose to extend foster placements beyond the age of 18. All local authorities must have a Staying Put policy to ensure transition from care to independence and adulthood that is similar for care leavers to that which most young people experience, and is based on need and not on age alone.

For some people with complex SEN and care needs, local authorities and their partners may decide that children’s services are the best way to meet a person’s needs – even after they have turned 18. Both the Care Act 2014 and the Children and Families Act 2014 allow for this.

The Children and Families Act enables local authorities to continue children’s services beyond age 18 and up to 25 for young people with EHC plans if they need longer to complete or consolidate their education and training and achieve the outcomes set out in their plan.

Under the Care Act 2014, if, having carried out a transition assessment, it is agreed that the best decision for the young person is to continue to receive children’s services, the local authority may choose to do so.

Children and adults’ services must work together, and any decision to continue children’s services after the child turns 18 will require agreement between children and adult services.

Where a person over 18 is still receiving services under children’s legislation through their EHC plan and the EHC plan ceases, the transition assessment and planning process must be undertaken. Where this has not happened at the point of transition, the requirement under the Care Act to continue children’s services (as set out above) applies.

Both the Children and Families Act 2014 and the Care Act 2014 also require young people and their parents to be fully involved making decisions about their care and support. This includes decisions about the most appropriate time to make the transition to adult services.

The EHC plan or any transition plan should set out how this will happen, who is involved and what support will be provided to make sure the transition is as seamless as possible.

22. Safeguarding after the age 18

Where someone is over 18 but still receiving children’s services and a safeguarding issue is raised, the matter should be dealt with by the adult safeguarding team (see Adult Safeguarding).

Where appropriate, they should involve the local authority’s children’s safeguarding colleagues as well as any relevant partners (for example police or NHS) or other persons relevant to the case.

The same approach should apply for complaints or appeals, as well as where someone is moving to a different local authority area after receiving a transition assessment but before moving to adult care and support.

23. Ordinary Residence and Transition to Higher Education

Where a young person is intending to move to a higher or further education institution which is out of the area where they were receiving children’s services, they will usually remain ordinarily resident in the area where their parents live (or the local authority area which had responsibility for them as a child).

However, this is not always the case (see Ordinary Residence and Annex H). It will be an important aspect of transition planning to confirm as early as possible where someone will be ordinarily resident as an adult (see also Transitions Case Studies).Where a young person or carer wishes to attend a higher or further education institution, the local authority should help them identify a suitable institution as part of transition planning (if they have not done so already).

Once an offer has been accepted, the local authority should ensure the relevant institution is made aware as soon as possible of the young person’s or carer’s needs and desired outcomes and discuss a plan for meeting them.

As set out in the SEN code of practice, an EHC plan will cease if someone progresses to further or higher education, but a care and support plan is likely to be required thereafter.

Wherever possible, this should be a conversation involving the young person or carer, anyone else they wish to involve, the local authority, and the institution – as well as the local authority where the institution is located where appropriate. All higher and further education institutions have clear duties and responsibilities under the Equality Act 2010 with regard to ensuring that disabled students do not face discrimination or less favourable treatment when applying to, and studying in these institutions. They are likely to have a learning support team or similar that can lead transition discussions on their behalf. These conversations should also ensure young people and carers are aware of their rights to the Disabled Students Allowance and student loans.

The objective is to ensure that there will be an appropriate package of care and support in place from the day the young person or carer starts at the institution. In many cases a young person or carer studying at university will have a dual location, for example coming home to stay with the parents during weekends or holidays. Where this is the case, local authorities must ensure their needs are met all year round.

24. Transition from Children’s to Adult NHS Continuing Health Care

See Continuing Healthcare (NHS) chapter

Integrated Care Boards (ICBs) should use the National Framework for NHS Continuing Healthcare and supporting guidance and tools (especially the Decision Support Tool) to determine what ongoing care services people aged 18 years or over should receive (see Continuing Health Care – NHS).

The framework sets out that ICBs should ensure that adult NHS continuing healthcare is assessed at all transition planning meetings for all young people whose may be potential eligibility.

ICBs and LAs should have systems in place to ensure that appropriate referrals are made whenever either organisation is supporting a young person who, on reaching adulthood, may have a need for services from the other agency.

The framework sets out best practice for the timing of transition steps as follows:

• children’s services should identify young people with likely needs for NHS Continuing Health Care and notify the relevant ICBs when such a young person turns 14;
• there should be a formal referral for adult NHS CHC screening at 16;
• there should be a decision in principle at 17 so that a package of care can be in place once the person turns 18 (or later if agreed more appropriate).

Where a young person has been receiving children’s continuing health care, it is likely that they will continue to be eligible for a package of adult NHS CHC when they reach the age of 18.

Where their needs have changed such that they are assessed as no longer requiring such a package, they should be advised of this and of their right to request an independent review and mediation

The ICB should continue to participate in the transition process, in order to ensure an appropriate transfer of responsibilities, including consideration of whether they should be commissioning, funding or providing services towards a joint package of care.

Where it will benefit a young person with an EHC plan, local authorities have the power to continue to provide children’s services past a young person’s 18th birthday for as long as is deemed necessary.

Where there is a change in CHC provision, this must be recorded in the young person’s EHC plan, where they have one, and the young person must be advised of their right to ask the local authority for mediation up to the age of 25 (see SEND Code of Practice).

25. Further Reading

25.1 Relevant chapters

Assessment

Care and Support Planning

Personal Budgets

25.2 Relevant information

Chapter 16, Transition to Adult Care and Support, Care and Support Statutory Guidance (Department of Health and Social Care)

Transition from Children’s to Adults’ Services for Young People using Health or Social Care Services (NICE)

Welcome to Preparing for Adulthood: The Role of Social Workers (SCIE)

See also Transition to Adult Care and Support Case Studies, Resources

ePractice

Audio & Quick Read Summary

1. Introduction

Ensuring all people with a care and support plan, or support plan have the opportunity to reflect on what is working, what is not working and what might need to change is an important part of the planning process. It ensures that plans are kept up to date and relevant to the person’s needs and goals, provides confidence in the system and reduces the risk of crisis situations.

2. Review of the Care and Support Plan

The review process should be:

• person centred;
• outcome focused;
• accessible to the person and their carers;
• and proportionate to the needs being

The process must involve the person needing care and also the carer where feasible, and consideration must be given whether to involve an independent advocate who local authorities are required to supply in the circumstances specified in the Act (see Independent Advocacy).

The duty on the local authority is to ensure that a review occurs, and if needed, a revision follows this.

The local authority can also authorise others to conduct the review. This could include the person themselves or carer, a third party (such as a provider) or another professional.

The local authority remains responsible for assurance and sign off of the review.

The review will help to identify if the person’s needs have changed and may then lead to a reassessment. It should identify any circumstances which may have changed, and follow safeguarding principles to ensure that the person is not at risk of abuse or neglect.

The review must not be used as a mechanism to arbitrarily reduce the level of a person’s personal budget (see Personal Budgets).

Reviewing and revising care plans are intrinsically linked as it is often not be possible to decide whether to revise a plan without a thorough review.

Where a review is being undertaken and the person has a carer, the local authority should consider whether the carer’s support plan requires reviewing too.

There are occasions when a change to a plan is required but there has been no change in the levels of need (for example, a carer may change the times when they are available to support).

There may also be small changes in need, at times temporary, which can be accommodated within the established personal budget.

In these circumstances, it may not be appropriate for the person to go through a full review and revision of the plan. The local authority should respond to these ‘light touch’ requests in a proportionate and reasonable way.

Where a revision is necessary, assessment and care planning processes as detailed in Assessment and Care and Support Planning should be followed as appropriate and proportionate to the person’s situation. Where a plan is for a person with mental health problems, this chapter should be read in conjunction with Mental Capacity.

2. Keeping Plans under General Review

Keeping plans under review is an essential element of the planning process. Without a system of regular reviews, plans can become quickly out of date meaning that people are not receiving the right care and support required to meet their needs.

Plans may also identify outcomes that the person wants to achieve which are progressive or time limited, so a periodic review is vital to ensure that the plan remains relevant to the person’s goals and aspirations.

The local authority should have in place a system that allows for the proportionate monitoring of both care and support plans and support plans, to ensure that needs are continuing to be met.

This system should also include cooperating with other health and care professionals who may be able to inform the authority of any concerns about the ability of the plan to meet needs (see Integration, Cooperation and Partnerships).

A review is a positive opportunity to take stock and consider if the plan is enabling the person to meet their needs and achieve their aspirations.

The process should not be overly complex or bureaucratic, and should cover the broad elements below, which should be communicated to the person before the review process begins.

• Have the person’s circumstances and / or care and support or support needs changed?
• What is working in the plan, what is not working, and what might need to change?
• Have the outcomes identified in the plan been achieved or not?
• Does the person have new outcomes they want to meet?
• Could improvements be made to achieve better outcomes?
• Is the person’s personal budget enabling them to meet their needs and the outcomes identified in their plan?
• Is the current method of managing it still the best one for what they want to achieve, e.g. should direct payments be considered (see Personal Budgets)?
• Is the personal budget still meeting the sufficiency test?
• Are there any changes in the person’s informal and community support networks which might impact negatively or positively on the plan?
• Have there been any changes to the person’s needs or circumstances which might mean they are at risk of abuse or neglect?
• Is the person, carer, and / or independent advocate satisfied with the plan?

4. Planned and Unplanned Reviews

There are several different types of review a care and support or support plan including:

• a planned review (the date for which was set with the individual during care and support or support planning, or through general monitoring);
• an unplanned review (which results from a change in needs or circumstance that the local authority becomes aware of, for example a fall or hospital admission);
• a requested review (where the person with the care and support or support plan, or their carer, family member, advocate or other interested party makes a request that a review is conducted. This may also be as the result of a change in needs or circumstances).

4.1 Planned reviews

During the planning process, the person and their social worker, or relevant professional may have discussed when it might be useful to review the plan and therefore agree to record this date in the plan.

This may be helpful so that people know when their review will take place, rather than the review being an unexpected experience. The person concerned may have a view as to a suitable timeframe for the review to occur. Setting review dates may also help authorities future workload planning.

The first planned review should be an initial ‘light touch’ review of the planning arrangements 6-8 weeks after sign off of the personal budget and plan. Where relevant, this should also be combined with an initial review of direct payment arrangements. A light touch review aims to check that the plan is working as intended, and identify any teething problems. Where plans are combined with carers, education, housing, or health and care plans which may be reviewed annually) the local authority should be aware of the review arrangements with these other plans and seek to align reviews.

Local authorities should ensure that the planned review is proportionate to:

• the circumstances;
• the value of the personal budget;
• any risks identified.

In a similar way to care and support or support planning, there should be a range of review options available, which may include:

• self-review;
• peer led review;
• reviews conducted remotely, over the telephone or video conferencing;
• face to face reviews with a social worker or other relevant professional.

For example, where the person has a stable, longstanding support package with fixed or long term outcomes, they may wish to complete a self-review at the planned time which is then submitted to the local authority to sign off, rather than have a face to face review with their social worker.

This does not mean that they cannot request a review at another time or a face to face review if there is an unplanned change in needs or circumstances.

4.1 Who should be involved?

In all instances, the method of review should, wherever reasonably possible, be agreed with the person and must involve the adult to whom the plan relates, any carer the adult has and any person the adult asks the authority to involve.

The local authority should take all appropriate measures to ensure the involvement of the person concerned and the involvement of other people if appropriate, such as an independent advocate where this is required.

If a person has a mental impairment and / or lacks capacity to make some decisions, careful consideration must be given to the date of the next review. In these instances, a social worker may be identified as the lead professional.

Where health conditions are progressive, and / or the person’s health is deteriorating, reviews may need to be much more frequent.

Similarly where a person has few or no family members or friends involved in supporting them, the risks are higher, and again, reviews or monitoring may need to be more frequent.

It may helpful l to put a ‘duty to request a review’ into commissioned services, so employees are required to inform the local authority if they think that there is a need for a review.

Where this occurs, the person should still be involved in the review process to ensure their views are taken account of.

4.2 Unplanned reviews

Consideration should be given to immediately conducting a review if circumstances change so that:

• a carer is no longer able to provide the same level of care;
• there is evidence of a deterioration of the person’s physical or mental wellbeing;
• or the local authority receives a safeguarding alert.

During the review process, the person concerned, or the person acting on their behalf should be kept fully involved and informed to reduce anxiety at a time where things in the person’s life may have changed substantially.

5. Considering a request for a review of a plan

5.1 Advice and information

In addition to the duty on local authorities to keep plans under review generally, the local authority has a duty to conduct a review if a request for one is made by the adult or a person acting on the adult’s behalf.

Local authorities should provide information and advice to people at the planning stage about how to make a request for a review. This process should be in accessible formats and include the different way of to making a request, by phone, email, or text for example.

Information given should also outline what happens after a request is made, and the timescales involved in the process.

5.2 Considering the request

The process should be made as simple as possible, with the local authority acting promptly after a request has been received. Consideration should also be given to the accessibility needs of the local population. This may, for example, include multiple language versions, and non-internet routes to request for people who may not have access to the internet, or in areas of digital exclusion. Local authorities should also consider the role that local community and voluntary organisations can play to help people log requests.

The right to request a review applies not just to the person receiving the care, but to others supporting them or interested in their wellbeing. For example a person with advanced dementia may not be able to request a review, but a relative or a neighbour may want to draw the attention of the local authority to a deterioration in the person’s condition. The local authority should consider the request even if it is not made by the adult or their carer.

5.3 Considering a review

Upon receipt of a request to conduct a review, the local authority must judge the merits of conducting a review. In most cases a review should be organised unless the authority is reasonably satisfied that:

• the plan remains sufficient;
• the request is frivolous;
• is made on the basis of inaccurate information, for example where a person lodges multiple requests for a review in a short period of time and there is no reason to believe that the person’s needs have changed;
• or is a complaint, in which case the complaints process should be followed (see Complaints).

Local authorities should clearly set out the process that will be used to consider requests.

The authority must involve the person, carer and anyone else the person requests to be involved where feasible, and identify anyone  who may have significant difficulty in being fully involved in the review and when there is no appropriate person who can represent or support their involvement and consider the duty to provide independent advocacy (see Independent Advocacy).

6. Decisions not to Conduct Reviews

Where a decision is made not to conduct a review following a request, the local authority should set out the reasons for not accepting the request in a format accessible to the person, along with details of how to pursue the matter if the person remains unsatisfied.

In most cases, it would be helpful for this to include information that the authority will continue to monitor the plan to ensure that it remains fit for purpose, and that the decision does not affect the right to make a future request for review. It may also be useful for the local authority to set out when the person can expect a formal review of the plan.

7. Revision of the Care and Support Plan and Support Plan

Where a decision has been made following a review that a revision to the care plan is necessary, the authority should inform the person, or a person acting on their behalf of the decision and what this will involve.

Where the person has substantial difficulty in being actively involved with the review, and where there are no family or friends to help them to engage, an independent advocate must be involved

When revising the plan the local authority must involve the person, their carer and any other persons the adult may want involved, and their advocate where the person qualifies for one.

The local authority must take all reasonable steps to agree the revision.

The revision should follow the process used in the assessment and care planning stages (see Assessment and Care and Support Planning).

If circumstances have changed to the extent that a major change is needed to the care and support or support plan, the local authority must carry out a needs or carer’s assessment and financial assessment, in order to revise the revise the plan and personal budget to meet the changes circumstances.

The assessment process following a review should not start from the beginning of the process but pick up from what is already known about the person and should be proportionate.

In some cases a complete change of the plan may be required, whereas in others minor adjustments may be needed. In either case, the following aspects of care planning should be followed:

• the person’s wishes and feelings should be identified as far as possible and they should be supported to be involved;
• the revision should be proportionate to the needs to be met;
• where the plan was produced in combination with other plans, this should be considered at the revision stage;
• the person, carer or person acting on their behalf should be encouraged to be at the central of the review process to self-plan in conjunction with the local authority where appropriate;
• the development of the revised plan must be made with the involvement of the adult / carer, and any person the adult asks the authority to involve;
• any elements that were in the original plan should be replicated in the revised plan where appropriate and agreed by all parties;
• the sign off process should be made clear, especially where the revised plan is prepared by the person and the local authority.

Particular attention should be taken if the revisions to the plan propose increased restraints or restrictions on a person who has not got the capacity to agree them. This may become a deprivation of liberty, which requires appropriate safeguards to be in place. The social worker, occupational therapist and any other relevant social care qualified professional or Mental Capacity lead should be involved, as well as an advocate (see Deprivation of Liberty Safeguards).

The local authority must consider in all cases whether an independent advocate may be required to facilitate the person’s involvement in the revision of the plan.

Where the plan was produced with the assistance of an independent advocate, then consideration should be given to whether an independent advocate is also required for the revision of the plan.

The advocate would ideally be the same person to ensure consistency and continuity with the case details. Similarly, where a specialist assessor has been used previously in the assessment, consideration should be given to whether they need to employ the expertise of the specialist assessor in the review.

8. Timeliness and Regularity of Reviews

In the absence of a request for a review, or any indication that circumstances may have changed, the local authority should conduct a regular review of plan.

The date of the review can be indicated at the planning stage or reviews can be linked to the compulsory review of the direct payment arrangements, where this is appropriate.

Reviews should be completed no later than every 12 months, although a light touch review should be considered 6– 8 weeks after agreement and sign off of the plan and personal budget, to ensure that the arrangements are accurate and there are no initial issues to be aware of.

This light touch review should also be considered after revision of an existing plan to ensure that the new plan is working as intended, and in cases where a person chooses a direct payment, should be aligned with the review of the making of the direct payment.

The review should be proportionate to the needs to be met, and the process should not contain any surprises for the person concerned.

Periodic reviews and reviews in general must not be used to arbitrarily reduce a care and support package. Such behaviour would be unlawful under the Act as the personal budget must always be an amount appropriate to meet the person’s needs. Any reduction to a personal budget should be the result of a change in need or circumstance.

As with care and support planning the revision of the plan should be completed in a timely manner proportionate to the needs to be met.

9. Meeting Urgent Needs

Where there is an urgent need to intervene, local authorities should consider implementing interim packages to urgently meet needs while the plan is revised. However, local authorities should work with the person to avoid such circumstances wherever possible by ensuring that any potential emergency needs are identified as part of the care and support planning stage and planned for accordingly.

10. Further Reading

10.1 Relevant chapters

Care and Support Planning

Independent Advocacy

Preventing, Reducing and Delaying Needs

10.2 Relevant information

Chapter 13, Review of Care and Support Plans, Care and Support Statutory Guidance (Department of Health and Social Care)

See also Review of Care and Support Plans Case Studies, Resources

ePractice

Local authorities must take all reasonable steps to protect the movable property of an adult with care and support needs who is being cared for away from home, in a hospital or in accommodation such as a care home, and who cannot arrange to protect their property themselves; this could include their pets as well as their personal property (for example, private possessions and furniture). Local authorities must act where it believes that if it does not take action there is a risk of movable property being lost or damaged.

Protecting property may include arranging for pets to be looked after when securing premises for someone who is having their care and support needs provided away from home in a care home or hospital, and who has not been able to make other arrangements for the care of their home or pets.
In order to protect movable property in these circumstances the local authority may enter the property, at reasonable times, with the adult’s consent, ideally in writing; but reasonable prior notice to enter should be given.

If the adult lacks the capacity to give consent to the local authority entering the property, consent should be sought from a person authorised under the Mental Capacity Act 2005 to give consent on the adult’s behalf. This might be:

• an attorney (also known as a donee with lasting power of attorney) that is someone appointed under the Mental Capacity Act 2005 who has the legal right to make decisions (for example decisions about their care and support) within the scope of their authority on behalf of the person (the donor) who made the power of attorney;
• a deputy (also known as a court appointed deputy) that is a person appointed by the Court of Protection under the Mental Capacity Act 2005, to take specified decisions on behalf of someone who lacks capacity to take those decisions themselves;
• the Court of Protection.

If the adult in question lacks capacity and no other person has been authorised to act on their behalf, the local authority must act in the best interests of the adult (see Mental Capacity).

If a third party tries to stop an authorised entry into the home they will be committing an offence, unless they can give a good reason for why they are obstructing the local authority in protecting the adult’s property. Committing such an offence could, on conviction by a Magistrates’ Court, lead to the person being fined. If a local authority intends to enter a home then it must give written authorisation to an officer of the council and that person must be able to produce it if asked for.

The local authority has no power to apply for a warrant to carry out their duties to protect property. If the Court decides the obstruction is reasonable then the local authority would have no power to force entry.

This duty on the local authority lasts until the adult in question returns home or makes their own arrangements for the protection of property or until there is no other danger of loss or damage to property; whichever happens first. Often a one off event is required such as the re-homing of pets or ensuring that the property is secured.

If costs are incurred or if there are ongoing costs the local authority can recover any reasonable expenses they incur in protecting property under this duty from the adult whose property they are protecting.

Further Reading

Relevant chapter

Mental Capacity

Relevant information

Organisational Responsibilities for Animal Welfare (RSPCA)

Guidance on Dog Control and Welfare for Police and Local Authorities

Code of Practice for the Welfare of Dogs (Department for Environment, Food and Rural Affairs)

Code of Practice for the Welfare of Cats (Department for Environment, Food and Rural Affairs)

Code of Practice for the Welfare of Privately Kept Non-Human Primates (Department for Environment, Food and Rural Affairs)

Chapter 10, Care and Support Planning, Care and Support Statutory Guidance (Department of Health and Social Care) 

Audio & Quick Read Summary

1. Introduction

Care and support should put people in control of their care, with the support that they need to enhance their wellbeing and improve their connections to family, friends and community. A vital part of this process for people with ongoing needs which the local authority is going to meet is the care and support plan or support plan in the case of carers. People must be involved throughout the planning process, and should be given every opportunity to take joint ownership of the development of the plan with the local authority if they wish, and the local authority agrees.

The person, will play a strong proactive role in planning if they choose to. The plan ‘belongs’ to the person it is intended for.  The local authority role is ensure the production and sign off of the plan to ensure that it is appropriate to meet the identified needs.

The personal budget gives everyone clear information regarding the cost of care and support and the amount that the local authority will make available, in order to help people to make better informed decisions as to how needs will be met (see Personal Budgets).

Direct payments must be clearly explained to the person, so that they can make an informed decision about the level of choice and control they wish to take over their care and support. This means offering the choice throughout the process and giving examples of how others have used direct payments, including direct peer support, and user led organisations.

Some people will need assistance to make plans and decisions, and to be involved in the planning process. Supported decision making options and choices should be presented simply and clearly.

Independent advocates must be involved early in the assessment and planning process for those who have substantial difficulty in engaging with the process, and have no other means of accessing support through friends or relatives. If the person’s substantial difficulty only becomes apparent during the assessment, an advocate must be instructed as soon as this becomes known (see Independent Advocacy).

The guiding principles in the development of the plan are that the process should be person centred and person led, in order to meet the needs and achieve the outcomes of the person in ways that work best for them as an individual or as part of a family.

The process and the outcomes should be built holistically around:

• people’s wishes and feelings;
• their needs;
• Values and aspirations.

These principles apply irrespective of the extent to which the person chooses or is able to actively direct the process.

2. Definitions

Person centred care and support planning applies to everyone whose needs are being met by the local authority, regardless of the setting in which the needs are met. For example, people in care homes must also receive a care and support plan and personal budget (see Personal Budgets).

For the purposes of this chapter ‘the plan’ means either the care and support plan (in the case of adults with care and support needs) or the support plan (in the case of carers).

3. When to undertake Care and Support Planning, and Support Planning

Following the needs and carer’s assessment and determination of eligibility (see Assessment and Eligibility), a plan must be provided where a local authority meets a person’s needs.

4. Meeting Needs

‘Meeting needs’ is an important concept under the Care Act and moves away from a service led assessment of need.  There are a variety of approaches in how needs can be met, developed through care and support planning. The concept of ‘meeting needs’ is intended to be broader than just a duty to provide or arrange a particular service. Because a person’s needs are specific to them, there are many ways in which their needs can be met. The intention behind the legislation is to encourage this diversity, rather than point to a service or solution that may be neither what is best nor what the person wants.

The purpose of the care and support planning process is to agree how a person’s needs should best be met.

There are a number of options for how needs could be met, and the use of these will depend on the person’s circumstances. This may include:

• the local authority directly providing some type of support, for example by providing a reablement or short term respite service;
• making a direct payment, which allows the person to purchase their own care and support;
• a combination of the above, for example the local authority arranging a homecare service whilst also providing a direct payment for the person to meet other needs.

Individual Service Funds are budgets held by a provider, rather than by the local authority or the individual. The local authority makes a payment to the provider, which then holds a budget over which the individual has control (see Personal Budgets).

The local authority provides or arranges care and support in many forms, including traditional ‘service’ options, such as care homes or home care, other types of support such as assistive technology in the home or equipment / adaptations and care and support which are available universally, including those which are not directly provided by the local authority.

For example needs could be met by a service which is provided by the local authority to prevent or reduce needs, or needs could be met, by putting a person in contact with a local community group or voluntary sector organisation.

4.1 Brokerage

The local authority may provide a ‘brokering’ a service on behalf of an individual in certain cases. Brokering services are offered by the local authority or organisations which are independent of the local authority. Brokering involves the local authority supporting the person to make a choice about the provider of their care, and to enter into a contract with that provider. The local authority does  not need to hold the contract with the provider, but is  be required to assure itself that the chosen provider and terms of the contract were appropriate to meet the person’s needs.

The local authority needs to be satisfied both that this is an effective way of meeting the person’s needs, and that the person was in agreement to this approach being used.

It is likely that brokering would only be an effective way of meeting a person’s needs in exceptional circumstances, for example where a person is fully funding their own care and wishes to retain control of the contract with their provider, but wants the local authority to meet their needs and the local authority has agreed to do so.

If there is a risk that a person’s needs would not be met effectively by means of brokering, the local authority should discount it as an option and proceed with other ways of meeting that person’s needs, such as direct commissioning of services from a provider.

In considering such an option, person must be willing and able to manage such arrangements now and in the future, including their ability to pay the charges due (for example, to mitigate against a future loss of capacity or disposal of their assets, such that the local authority may be required to take over the contract with the provider).

The local authority would continue to support the person in meeting any other needs, offering ongoing support and keeping the arrangements under review to ensure that the needs were met. The person would have a care and support plan as usual.

Whilst the local authority meets their needs, the person holds the contract with the provider.

In case of a direct payment, the money for commissioning the service comes from the local authority, whereas in the case of brokering it comes from the individual directly. This option, therefore, would only likely be of use for meeting the needs of people who are fully funding their own care but ask the local authority to meet their eligible needs, and who are not using alternative arrangements such as an individual service fund.

4.2 Relationship with other services

Local authorities should consider how needs may be met beyond the provision, or arrangement, of services by the authority. For example, needs may be met by a carer, in an educational establishment or by another institution other than the local authority. In these circumstances the local authority remains under a duty to meet the person’s eligible needs. If however, the alternative means of meeting the needs is in place and the authority is satisfied that this alternative means is, in fact, meeting the person’s eligible needs, then the authority may not need to arrange or provide any services to comply with that duty.

The local authority should still record those needs through the assessment process, determine whether the needs meet the eligibility criteria and keep under review.

4.3 Limitations on the circumstances in which local authorities may meet care and support needs.

The local authority must not meet needs by providing or arranging health service or facility which is required to be provided by the NHS, or doing anything under the Housing Act 1996. The aim of these provisions is to avoid duplication in the provision of services and facilities, and provide clarity about the limits of care and support, and the circumstances in which care and support should be provided as opposed to health services or housing services.

If a person is entitled to a service which could meet their needs, but they are not availing themselves of these services, the needs remain ‘unmet’. Therefore the local authority has a duty to meet the needs until those needs are actually met by the other service. Local authorities should inform and advise people on accessing all entitlements as soon as possible, working collaboratively with other local services to share information.

4.4 Needs met by a carer

The local authority does not have to meet any needs that are being met by a carer. However, the local authority must identify, during the assessment process, those needs which are being met by a carer at that time, and whether those needs meet the eligibility criteria. Any eligible needs met by a carer are not required to be met by the local authority, for so long as the carer continues to do so. The care and support plan should record which needs are being met by a carer, and should consider putting in place contingency plans to respond to any breakdown in the caring relationship.

4.5 Non-eligible needs

Where the local authority is not required to meet needs, it nonetheless may use its powers to meet any other needs. This may include, for example, meeting needs which are not ‘eligible’ (i.e. those which do not meet the eligibility criteria), or meeting eligible needs in circumstances where the duty does not apply (for example, where the person is ordinarily resident in another area). Where the local authority exercises such a power to meet other needs, the same duties would apply regarding the next steps, and therefore a plan must be provided.

If the local authority decides not to use its powers to meet other needs, it must give the person written explanation for taking this decision, and should give a copy to their advocate if the person requests. If the person cannot request this, then a copy should be given to the person’s advocate or appropriate individual if this in the best interests of the person. This explanation must also include information and advice on how the person can reduce or delay their needs in future. This should be personal and specific advice based on the person’s needs assessment and not a generalised reference to prevention services or signpost to a general website. For example, this should involve consideration of alternative ways in which a person could reduce or delay their care and support needs, including signposting to support within the local community. Authorities may choose to provide this information after the eligibility determination, in which case this need not be repeated again. At whatever stage this is done, in all cases the person must be given a written explanation of why their needs are not being met. The explanation provided to the person must be personal to and should be accessible for the person.

Where a local authority is meeting some needs, but not others, a combination of the two approaches above must be followed. The person must receive a care and support plan for the needs the local authority is required, or decides to meet that accords to the Act and this guidance, and which also includes a tailored package of information and advice on how to delay and/or prevent the needs the local authority is not meeting. This information should be given to the person in a format accessible to them so they are clear what needs are being met by the local authority.

5. How to undertake Care and Support Planning and Support Planning

The plan must detail:

• the needs to be met;
• how the needs will be met;
• link back to the outcomes that the adult wishes to achieve in day to day life as identified in the assessment process;
• reflect the individual’s wishes, their needs and aspirations;
• what is important to and for them, where this is reasonable.

The local authority should encourage creativity in planning how to meet needs, and refrain from judging unusual decisions as long as these are determined to meet needs in a reasonable way.

5.1 Joint planning

Joint planning does not mean a 50:50 split; the person can take a bigger share of the planning where this is appropriate and the person wishes to do so. A further principle is that planning should be proportionate.

6. Production of the Plan

Information must be made available in ways that are meaningful to the person, and that they must have support and time to consider their options. A named contact or lead professional should be considered both as part of the care planning process, so that the person knows how to contact the local authority. The planning choices offered could include:

• support for the person, to jointly develop their plan with the local authority alone or with their family, friends or whoever they may wish to involve (this might include web based resources,
• written information and peer support
• one to one support from a paid professional, such as a social worker which may be the same person who undertook the assessment.

Where the person has substantial difficulty in being actively involved with the planning process, and they have no family and friends who are able to support them, the local authority must provide an independent advocate to represent and support the person (see Independent Advocacy). Likewise, where a person with specific expertise or training in a particular condition (for example, deafblindness) has carried out the assessment, someone with similar knowledge (and preferably the same person to ensure continuity) should also be involved in production of the plan.

In ensuring that the process is person centred, the local authority should ensure that any staff responsible for developing the plan with the person are trained in the Mental Capacity Act 2005 if appropriate, familiar with best practice, and that there is sufficient local availability of independent advocacy and peer support, including access to social work advice.

When developing the plan, there are certain elements that must always be incorporated in the final plan, [unless excluded by the Care and Support (Personal Budget Exclusion of Costs) Regulations 2014]. These are:

• the needs identified by the assessment;
• whether, and to what extent, the needs meet the eligibility criteria;
• the needs that the authority is going to meet, and how it intends to do so;
• for a person needing care, for which of the desired outcomes care and support could be relevant;
• for a carer, the outcomes the carer wishes to achieve, and their wishes around providing care, work, education and recreation where support could be relevant;
• the personal budget (see Personal Budgets);
• information and advice on what can be done to reduce the needs in question, and to prevent or delay the development of needs in the future;
• where needs are being met via a direct payment, the needs to be met via the direct payment and the amount and frequency of the payments.

These requirements should not lead to a lengthy process where this is not necessary, or decisions that cannot be changed easily. Maximum flexibility should be incorporated to allow adjustment and creativity, for example by allowing people to include personal elements into their plan which are important to them (but which the local authority is not under a duty to meet), or by developing the plan in a format that works for the person rather than a standard template.

Consideration of the needs to be met should take a holistic approach that covers aspects such as the person’s wishes and aspirations in their daily and community life, rather than a narrow view purely designed to meet personal care needs.

Consideration of needs should also include the extent to which the needs or a person’s other circumstances may mean that they are at risk of abuse or neglect. The planning process may bring to light new information that suggests a safeguarding issue, and therefore lead to a requirement to carry out a safeguarding enquiry (see Adult Safeguarding). Where such an enquiry leads to further specific interventions being put in place to address a safeguarding issue, this may be included in the care and support plan.

In considering the person’s needs and how they may be met, the local authority must take into consideration any needs that are being met by a carer. The person may have assessed eligible needs which are being met by a carer at the time of the plan – in these cases the carer must be involved in the planning process. Provided the carer remains willing and able to continue caring, the local authority is not required to meet those needs. However, the local authority should record the carer’s willingness to provide care and the extent of this in the plan of the person and also the carer, so that the authority is able to respond to any changes in circumstances (for instance, a breakdown in the caring relationship) more effectively. Where the carer also has eligible needs, the local authority should consider combining the plans of the adult requiring care and the carer, if all parties agree, and establish if the carer requires an independent advocate.

Local authorities should have regard to how universal services and community based and / or unpaid support could contribute to the factors in the plan, including support that promotes mental and emotional wellbeing and builds social connections and capital. This may require additional learning and development skills and competencies for social workers and care workers which local authorities should provide.

Authorities are free, and are indeed encouraged, to include additional elements in the plan where this is proportionate to the needs to be met and agreed with the person the plan is intended for. For example, some people may value having an anticipated review date built into their plan in order for them to be aware of when the review will take place. As detailed in the review chapter, it is the expectation that the plan is reviewed no later than every 12 months, although a light touch review should be considered 6-8 weeks after the plan and personal budget have been signed off.

The plan should be proportionate to the needs to be met, and should reflect the person’s wishes, preferences and aspirations. However, local authorities should be aware that a ‘proportionate’ plan does not equate to a light touch approach, as in many cases a proportionate plan will require a more detailed and thorough examination of needs, how these will be met and how this connects with the outcomes that the adult wishes to achieve in day to day life.

For example, the person may have fluctuating needs, in which case the plan should make comprehensive provisions to accommodate for this, as well as indicate what contingencies are in place in the event of a sudden change or emergency. This should be an integral part of the care and support planning process, and not something decided when someone reaches a crisis point. Furthermore, specific consideration should be given to how planning is conducted in end of life care.

In all cases, additional content to the plan must be agreed with the adult and any other person that the adult requests, and should be guided by the person the plan is intended for. There should also be no restriction or limit on the type of information that the plan contains, as long as this is relevant to the person’s needs and/or outcomes. It should also be possible for the person to develop their plan in a format that makes sense to them, rather than this being dictated by the recording requirements of the local authority.

7. Direct Payments

In developing the plan, the local authority must inform the person which, if any, of their needs may be met by a direct payment. The local authority should provide the person (and/or their independent advocate or any other individual supporting the person, if relevant and if the person wishes this) with appropriate information and advice concerning the usage of direct payments, how they differ from traditional services, and how the local authority will organise the payment (for example an explanation of the direct payment agreement or contract, and how it will be monitored). This advice should also include detail such as:

• the ability for someone else (such as a carer) to receive and manage the direct payment on behalf of the person;
• the ability to request to pay a close family member to provide care and/or administration and management of the direct payment if the local authority determines this to be necessary;
• the difference between purchasing regulated and unregulated services (for example regarding personal assistants);
• explanation of responsibilities that come with being an employer, managing the payment, and monitoring arrangements and how these can be managed locally without being a burden;
• signposting to direct payment support and support organisations available; in the area (for example employment, payroll, admin support, personal assistants, peer support);
• that there is no curtailment of choice on how to use the direct payment (within reason), with the aim to encourage innovation;
• local examples and links to people successfully using direct payment in similar circumstances to the person (providing these groups agree);
• the option to have needs met by a mixed package of direct payments and other forms of support or arrangements.

This information should assist the person to decide whether they wish to request a direct payment to meet some or all of their needs and should be available at various points in the process to ensure people have the best opportunities possible to consider how direct payments may be of benefit to them.

8. Involving the Person

In addition to taking all reasonable steps to agree how needs are to be met, the local authority must involve the person the plan is intended for, the carer (if there is one), and / or any other person the adult requests to be involved.

Where the person lacks capacity, the local authority must involve any person who appears to the authority to be interested in the welfare of the person and should involve any person who would be able to contribute useful information.

An independent advocate must be provided where the criteria applies (see Independent Advocacy).

The person, and their carers, are well placed to identify care and support which would best fit into their lifestyle and help them to achieve the day to day outcomes they identified during the assessment process.

Consideration should be given to include a prompting the person during the initial stages of the planning process to ask whether there is anyone else that they would like to be involved.

Where the person lacks capacity, the local authority should make a best interests decision about who else should be involved (see Mental Capacity).

The level of involvement should be agreed with the individual and any other party they wish to involve and should reflect their needs and preferences.

This may entail local authorities involving the person through regular planning meetings, or there may be instances where telephone conversations, video conferencing, or other means may be appropriate.

Support of speech and language therapists or other specialists such as interpreters may also be needed.

Some people will need little help to be involved, others will need much more. Social workers or other relevant professionals should have a discussion with the person to get a sense of their confidence to take a lead in the process and what support they feel they need to be meaningfully involved.

The person should be supported to understand what is being discussed and what options are available for them. The local authority should make sure that a person’s lack of confidence to take a lead in the process does not limit the extent to which they can play an active role, if they wish to do so. Where they have substantial difficulty in being actively involved in the process, then they should be assisted by a family member or friend. If the person already has an advocate, whose role has been to support the person on matters not under the Care Act, then it may be appropriate for them to support the individual’s involvement and represent them. If an advocate is required under the Mental Capacity Act 2005 (MCA) as well as the Care Act, then the instruction, appointment and qualification of the advocate must meet the requirements of the MCA. The local authority must instruct an independent advocate if there is no one to represent and support the person’s involvement (see Independent Advocacy). This duty arises if the person would, without the representation and support of an independent advocate, experience substantial difficulty in any of the following:

• understanding relevant information;
• retaining that information;
• using or weighing that information as part of the process of being involved;
• communicating their views, wishes or feelings (whether by talking, using sign language, or any other means).

There may be cases where a person who has substantial difficulty in the above, has no family or friend who can help, and therefore requires an independent advocate to understand the relevant information provided by the local authority, and to be able to use it to effectively plan for their care and support.

9. Authorising others (including the Person) to prepare the Plan jointly with the Local Authority

Where a plan is being jointly prepared by the local authority and the person whose plan it is, or the local authority and a third party, the local authority should ensure that relevant information is shared securely, promptly and in accordance to the Data Protection Act to allow the plan to be prepared in a timely fashion.

Each partner should be clear about their role. For example, the person may need help to weigh up different service options to understand what each involves and to be able to choose the most appropriate and least restrictive option possible.

In some circumstances it may not be appropriate to jointly prepare the plan. For example, a person may not wish their family to be involved, or the authority may be aware that family members may have conflicting interests, or the person may have asked the local authority to prepare the plan with someone who lives far away from the person and even with the assistance of email, phone and other methods of communication is unable to prepare the plan in a timely fashion.

The test for allowing the person and others to prepare the plan jointly with the local authority should start with the presumption that the person at the heart of the care plan should give consent for others to do so. Safeguarding principles must be included in order to ensure that there is no conflict of interest between the person and the third party they wish to involve to prepare the plan jointly with (see Adult Safeguarding).

Where a person lacks capacity and cannot consent to third parties jointly preparing the plan, the local authority must always act in the best interests of the person requiring care and support.

10. Planning for People who lack Capacity

Good person centred support planning is particularly important for people with the most complex needs. Many people receiving care and support have mental impairments, such as dementia or learning disabilities, mental health needs or brain injuries. The principles of the Care Act apply equally to them, in addition to the principles and requirements of the MCA if the person lacks capacity (see Independent Advocacy).

The MCA requires local authorities to assume that people have capacity and can make decisions for themselves, unless otherwise established. Every adult has the right to make his or her own decisions in respect of his or her care plan, and must be assumed to have capacity to do so unless it is proved otherwise. This means that local authorities cannot assume that someone cannot make a decision for themselves just because they have a particular medical condition or disability (see Mental Capacity).

11. Combining Plans

Plans should not be developed in isolation from other plans (such as plans of carers or family members, or Education, Health and Care plans) and should have regard to all of the person’s needs and outcomes when developing a plan, rather than just their care and support needs.

Where other plans are present or are being completed, these can be combined if appropriate. This should be considered early on in the planning process (at the same time as considering the person’s needs and how they can be met in a holistic way) to ensure that the package of care and support is developed in a way that fits with what support is already being received or developed. The plan should only be combined if all parties to whom it is relevant agree and understand the implications of sharing data and information. Consent should be obtained from all parties involved, and the combination of plans should aim to maximise outcomes for all involved.

Where one of the plans to be combined is for a child (below 18 years old), the child must have capacity to agree to the combination, or if lacking capacity, the local authority must be satisfied that the combination of plans would be in the child’s best interests. If there is a conflict of interest (for example a parent does not wish to support their 17 year old daughter’s wish for greater independence) it may not be in their best interests (see Transition to Adult Care and Support).

The local authority may be undertaking care and or support planning for two people in the same household who require independent advocacy to facilitate their involvement.

If both people have the capacity to consent to having the same advocate, and the advocate and the local authority both consider there is no conflict of interest, then the same advocate may support and represent the two people.

If either person lacks the capacity to consent to having the same advocate, the advocate and local authority must both ensure that using the same advocate would not raise a conflict of interest and would be in the best interests of both persons (see Deprivation of Liberty).

Consideration should also be given to how plans could be combined where budgets are pooled, either with people in the same household, or between members of a community with similar care needs where this is appropriate and all parties agree (see Personal Budgets).

Pooling arrangements should not be restricted to individuals using the same provider. Networks of pooling arrangements should be encouraged to bring groups of people together in a more effective manner.

Where it has been agreed to combine the plan with plans relating to other people, it is important that the individual aspects of each person’s plan are not lost in the process of combining plans. The combined plan should reflect the individual needs and circumstance for each person involved, as well as any areas where a joint approach has been agreed to meet needs in a more effective way.

Plans can be combined in cases where the person is receiving both local authority care and support and NHS health, for instance a person with mental disorder who meets the criteria for care and support under the multi-agency Care Programme Approach.

The introduction of personal health budgets in health, similar to personal budgets in social care, provides a tool to enable integrated health and care provision which focuses on what matters most to the person.

Local authorities should provide information to the person of the benefits of combining health and social care support, and work with health colleagues to combine health and care plans wherever possible.

In combining plans, whether among people or organisations, it is vital to avoid duplicating process or introducing multiple monitoring regimes. Information sharing should be rapid and seek to minimise bureaucracy.

Local authorities should work alongside health and other professionals (such as housing) where plans are combined to establish a ‘lead’ organisation who undertakes monitoring and assurance of the combined plan (this may also involve appointing a lead professional and detailing this in the plan so the person knows who to contact when plans are combined).

12. Sign off and Assurance

The local authority should not introduce systems that place any undue burden on the person, or that undermine the joint preparation of plans, such as excessive quality control. The local authority’s role where the person or third party are undertaking the preparation of the plan jointly with the local authority includes:

• overseeing and providing guidance for the completion of the plan;
• ensuring that the plan sufficiently meets needs;
• ensuring that the plan is appropriate and represents the best balance between value for money and maximisation of outcomes for the person.

This may involve providing materials and approaches to support people jointly preparing the plan with the local authority. Where the local authority is preparing the plan on behalf of the person, or delegating this to a third party to do so, the best interests of the person must be reflected throughout.

The local authority must take all reasonable steps to reach agreement with the person for whom the plan is being prepared.

Wherever possible, local authority sign off should occur when the person, any third party involved in the preparation of the plan and the local authority have agreed on the factors within the plan, including the final personal budget amount (which may have been subject to change during the planning process), and how the needs in question will be met.

This is a key part of the planning process, agreement should be recorded and a copy placed within the plan.

Where an independent advocate has been involved, they should not be asked to sign off the plan – this is the responsibility of the local authority.

There is no defined timescale for the completion of the care and support planning process, but the plan should be completed in a timely fashion, proportionate to the needs to be met. Local authorities must ensure that sufficient time is taken to ensure the plan is appropriate to meet the needs in question, and is agreed by the person the plan is intended for. The planning process should not unduly delay needs being met.

Due regard should be taken to the use of approval panels. In some cases, panels may be an appropriate governance mechanism to sign off large or unique personal budget allocations and / or plans. Where used, panels should be appropriately skilled and trained, and local authorities should refrain from creating or using panels that seek to amend planning decisions, micro-manage the planning process or are in place purely for financial reasons.

The local authority should consider how to delegate responsibility to their staff to ensure sign off takes place at the most appropriate level.

In cases or circumstances where a panel is to be used, and where an expert assessor has been involved in the care and support journey, the same person or another person with similar expertise should be part of the panel to ensure decisions take into account complex or specialist issues.

13. Disagreements

In the event that the plan cannot be agreed with the person, or any other person involved, the local authority should state the reasons for this and the steps which must be taken to ensure that the plan is signed off.

This may require going back to earlier elements of the planning process. People must not be left without support while a dispute is resolved.

If a dispute still remains, and the local authority feels that it has taken all reasonable steps to address the situation, it should direct the person to the local complaints procedure.

However, by conducting person centred planning and ensuring genuine involvement throughout, this situation should be avoided.

Upon completion of the plan, the local authority must give a copy of the final plan which:

• should be in a format that is accessible to the person for whom the plan is intended;
• any other person they request to receive a copy;
• their independent advocate if they have one and the person agrees.

This should not restrict local authorities from making the draft plan available throughout the planning process; indeed in cases where a person is preparing the plan in conjunction with the local authority, the plan should be in their possession.

Consideration should also be given to sharing key points of the final plan with other professionals and supporters, with the person’s consent (for example, as part of the person’s health record), or sharing the plan in the best interests of a person who lacks capacity to decide on this matter.

14. Further Reading

14.1 Relevant chapters

Preventing, Reducing or Delaying Needs

Review of Care and Support Plans

14.2 Relevant information

Chapter 10, Care and Support Planning, Care and Support Statutory Guidance (Department of Health and Social Care)

Culturally Appropriate Care (Care Quality Commission)

See also Care and Support Planning Case Studies, Resources

ePractice

1. Introduction

Personalisation is a way of thinking about health and care services that puts people at the centre of understanding their needs, choosing their support and having control over their lives. It also means people have the support they need to live independently and actively in their communities.

Personalisation has a wide agenda, encompassing a number of different areas, some of which have been incorporated into the Care Act 2014. This includes information and advice; prevention and early intervention; community capacity building; improved use of universal services, personalising the formal support people need and providing person centred care.

Personalisation is an approach that was first adopted by adult social care services, and was further developed by the Think Local, Act Personal (TLAP) partnership. It now incorporates other sectors including the voluntary and community sectors, people with care and support needs, carers and family, and the NHS as part of the Integrated Personal Commissioning (IPC) programme which brings together health and social care funding around individuals, enabling them to direct how it is used.

2. Personalisation for Adults and Carers

Personalisation is often associated with direct payments and personal budgets (see Personal Budgets chapter). These resources enable adults to choose the services they receive, rather than the previous approach of people having to adapt to available services.

It also includes the provision of improved information and advice on care and support for adults and carers, investment in services to prevent, reduce or delay people’s need for care and support and the promotion of independence and self-reliance among individuals, carers and communities.

The aim of the personalisation agenda is to improve the lives of adults and their carers. The challenge is to ensure that all people – including those with dementia and mental health problems who lack capacity for example – also fully benefit.

Adults are able to self-assess their own needs, with or without support, play a full part in drawing up a wide-ranging support plan and directly purchase or choose the services they want (see Assessment chapter). Personalisation in relation to adults with care and support needs should, however, be considered within the context of risk; to the adult, their carers and others.

3. Frontline Professionals, Commissioners and Providers

Personalisation has significantly impacted on the work of social care professionals and the ethos of local authority adult social care teams. The core functions of care management – assessing adults, risk assessments, drawing up a care plan and purchasing services to meet needs – have all been transformed through personal budgets. This will continue with the implementation of the Care Act 2014 and be extended to include other sectors and professionals, including the NHS.

As a result of personalisation, local authorities have created a range of roles to support adults in carrying out these tasks or commissioned external organisations to do so, including user led organisations (ULOs).

The role of commissioner has changed as a result of personalisation. Instead of purchasing services in bulk from available providers and fitting adults who are eligible into those services that best meet their needs, commissioners now shape the social care market to promote the availability of a diverse range of high quality services from which adults, and their carers, can choose.

Local authorities must ensure adults can access a diverse market of providers, and producing a market position statement can set out how they plan to implement the duty (see 4.69 – 4.87 Care and Support Statutory Guidance 2014).

Personalisation also requires a change in approach from care providers. As councils devolve purchasing responsibility to adults and their carers, local authorities are using framework agreements rather than block contracts with local authorities. Instead, councils are setting up framework agreements, under which providers are accredited to provide services of a particular quality at an agreed price but are not guaranteed business, as decisions on whether to use them rest with service users. This should make providers more responsive to service users’ needs and wants and drive innovation.

4. Further Reading

4.1 Relevant chapters

Promoting Wellbeing

Preventing, Reducing and Delaying Needs

4.2 Relevant information

Think Local, Act Personal

Culturally Appropriate Care (CQC)  

Personalisation in Black, Asian and Minority Ethnic Communities Report (Think Local Act Personal)

What is Personalisation? (SCIE)

Culturally Appropriate Care (Care Quality Commission)

Appendix 1: Ten Lessons for Personalisation in the NHS

The information below is taken from Getting Serious about Personalisation in the NHS, TLAP, 2014. However, it contains key information for all organisations and staff involved in the personalisation agenda.

• KEEP THE PERSON AT THE CENTRE – engaging people meaningfully in the design, delivery and evaluation of care and support is intuitively right to ensure it works in the best way possible. But services are often bad at this and genuine co-production with people as active partners in their care is challenging in practice. This is an ongoing journey in social care, but there is growing evidence of the benefits.
• CULTURE OVER PROCESS – personalisation is primarily an ethos requiring profound cultural change and different ways of thinking and working, but getting bogged down by process is easy to do. Much of the early story of personalisation in social care revolved around protracted efforts to devise the perfect method of resource allocation, with very mixed results. Getting the process right is important – but shifting the culture of care should be the primary goal.
• EVOLUTION NOT REVOLUTION – it is impossible to shift culture overnight and immediate change risks destabilizing things that are working well. There have been benefits to urgency and a place for targets in the social care story, but the transformation envisaged was always going to take a generation to deliver and the same will be the case in health.
• CREATE A COMMON LANGUAGE – the proliferation of different terminology surrounding personalisation in social care has caused confusion. Agreeing a common, jargon free language will help convey the benefits to people, staff and the public. New ways of thinking may need new language, but being person-centred shouldn’t require a thesaurus!
• BUILD AWARENESS – People with health and care needs should understand their rights, know what to expect and be able to explore the potential benefits of personal care and support planning and personal budgets. Insufficient attention was paid to these aspects of personal budgets in social care, but there can be no stronger lever for change.
• INFORMATION IS THE KEY – a lack of clear and accessible information and advice is always part of the problem when things don’t go well, yet is rarely top of the list of priorities. Universal information and advice is an essential building block for personalisation and the Care Act presents the opportunity to build on the learning from social care and take a more strategic, joined up approach.
• SOCIAL CAPITAL IS NOT A SIDELINE – personalisation has always involved a broader range of paradigm shifts than individualising funding, but some of these have had less attention than others in social care. The importance of focusing on building community capacity and recognising and strengthening people’s social capital is integral to the model and should be built in from the outset.
• CHOICE DOESN’T JUST HAPPEN – for personal budgets to deliver greater choice and control there need to be a greater range of options available. While providers do adapt over time to different purchasing decisions, commissioners have an important role to play in shaping what is available locally and working with providers to redesign services. This requires a different and more facilitative sort of commissioning – social care is only just starting to make this shift.
• GET PROVIDERS ON BOARD EARLY – personalisation is not just about commissioning differently, it has significant implications for providers and how services operate. This means it is important that providers are part of how the change is planned and delivered. In social care this focus was not sufficiently clear at an early stage leading to unnecessary anxiety and services delivering more of the same.
• MEASURE WHAT MATTERS – across the breadth of the agenda and starting from what is important to people with health and care needs rather than just measuring the things that are easiest to quantify. The social care experience has been instructive about the limitations of measuring culture change through the blunt instrument of personal budgets numbers. The narrative provides a useful starting point.

ePractice

1. Introduction

Personal budgets are a key part of the Government’s aspirations for a person centred care and support system. Independent research shows that where implemented well personal budgets can improve outcomes and deliver better value for money

The Care Act 2014 places personal budgets into law for the first time, making them the norm for adults with care and support needs.

A personal budget, in conjunction with the care and support plan, or support plan (see Care and Support Planning), enables the adult, and their advocate if they have one, to exercise more choice and control over how their care and support needs are met. It means:

• before care and support planning begins, having an estimate of how much money will be available to meet the adult’s assessed needs and, in the final personal budget, having clear information about the total amount of the budget, including the amount the local authority will pay, and what amount (if any) the person will pay;
• being able to choose how the money is managed from a range of options, including direct payments, the local authority managing the budget and a provider or third party managing the budget on the adult’s behalf ) or a combination of these approaches;
• having a choice over who is involved in developing the care and support plan for how the personal budget will be spent, including family or friends;
• having greater choice and control over the way the personal budget is used to purchase care and support and from whom it is purchased.

It is vital that the process used to establish the personal budget is transparent so that people are clear how their budget was calculated. It is also essential that the method used is robust so that people have confidence that the personal budget allocation is correct and therefore is adequate to meet their care and support needs. The allocation of a clear upfront indicative (or ‘ball park’) allocation at the start of the planning process will help people to develop the plan and make appropriate choices over how their needs are met.

The process of allocating the personal budget should be completed in a timely manner, proportionate to the needs of the adult to be met. At all times the person should be informed where they are in the care planning process, what will happen next and the likely timeframes.

This chapter applies to people in need of care and support and carers equally, unless specifically stated.

2. The Personal Budget

Everyone whose needs are met by the local authority, whether those needs are eligible (see Eligibility) or if the authority has chosen to meet other needs, should be allocated a personal budget as part of the care and support plan, or support plan.

The personal budget should give the adult clear information regarding the money that has been allocated to meet the needs identified in their assessment and recorded in their plan.

An indicative amount should be shared with them, and anybody else involved, at the start of the planning process, with the final amount being confirmed through this process. The detail of how the personal budget will be used should be set out in the finished plan. The detail of how the personal budget will be used is set out in the care and support plan, or support plan.

At all times, the wishes of the adult are considered and respected. For example, people should not be forced to accept specific options, such as moving into care homes, against their will because they are the cheapest.

3. Personal Budget Options

The adult, and anybody else the person wishes to assist them, can make informed decisions about how their personal budget operates, including:

• the adult can choose for the personal budget allocation to remain with the local authority to spend on their behalf, in line with their wishes;
• the budget can be placed in an Individual Service Fund (ISF), held by a third party provider, which works on the same basis;
• or be taken as a direct payment;
• or the adult may prefer a combination of approaches. For example, some of their needs may be met by a direct payment, with the remainder of the personal budget used to meet needs via the local authority or through an ISF. Where an ISF type arrangement is not available locally, the local authority should explore arrangements to develop this offer, and should be receptive to requests from personal budget recipients to create these arrangements with specified providers.

There may also be cases where a person prefers to use a mixed package of care and support. For example, this may be a direct payment to the person for some of their needs, with the remainder of the personal budget used to meet needs via local authority or third-party provision, or any combination of the above. The method of allocating the personal budget should be decided and agreed during the care and support planning process (see Care and Support Planning). It is important that these arrangements can be subsequently adjusted if the person wishes this, with the minimum of procedure. The process for allocating and agreeing the personal budget via the planning process should be as straightforward and as timely as possible so that the person can access the budget without significant delay.

4. Elements of the Personal Budget

The personal budget must always be sufficient to meet the person’s care and support needs, and must include the cost to the local authority of meeting the person’s needs which the local authority is under a duty to meet or has exercised its power to do so. This overall cost must then be broken down into the amount the person must pay, following the financial assessment, and the remainder of the budget that the authority will pay.

The personal budget may also set out other amounts of public money that the person is receiving, such as money provided through a personal health budget. Local authorities should consider requests from individuals to present their personal budget in this way. Integrated health and care, and integration of other aspects of public support are the long term vision of the government. This will provide the individual with a seamless experience, and can help to remove unnecessary bureaucracy and duplication that may exist where a person’s needs are met through money from multiple funding streams.

Local authorities must carry out their care and support responsibilities with a view to promoting integration with health and other related services (such as housing), and therefore should take a lead in driving the integration of support services for their population. For example, this may involve agreeing with partner organisations how to integrate budgets and to what extent, and the establishment of a lead organisation that agrees to oversee monitoring and assurance of all budgets the person is receiving.

Where a local authority is meeting the eligible needs of a person whose financial resources are above the financial limit, but who has requested the local authority meet their needs, the local authority may make a charge for putting in place the necessary arrangements to meet needs (see chapter 8 on charging and financial assessment). Where this occurs, the local authority should consider how best to set this information out to the person, in a format accessible to them. This fee is not part of the personal budget, since it does not relate directly to meeting needs, but it may be presented alongside the budget to help the person understand the total charges to be paid. For example, a local authority may wish to specify this in both the plan and the personal budget for the person so all parties are clear on how costs are allocated.

Similarly, there will be cases where a person or a third party on their behalf is making an additional payment (or a top up) in order to be able to secure the care and support of their choice, where this costs more than the local authority would pay for such a type of care. In these cases, the additional payment does not form part of the personal budget, since the budget must reflect the costs to the local authority of meeting the needs. However, the local authority should consider how best to present this information to the individual, so that the total amount of charges paid is clear, and the link to the personal budget amount is understood.

5. Self-Funding and Personal Budgets

See also Self-Funders.

Where the local authority is meeting the eligible needs of an adult (see Eligibility) whose financial resources are above the limit, but who has requested the local authority to meet their needs, a charge may be made for putting in place the arrangements to meet needs. When this occurs, the information should be set out for the person in an accessible format. This fee is not part of the personal budget, because it does not relate directly to meeting needs, but it should be presented alongside the budget to help the adult to understand the total charges to be paid. So that everyone is clear about how costs are allocated, this fee should be included in both the plan and the personal budget.

6. Independent Personal Budgets

Following assessment, adults with eligible needs that the local authority is not under a duty to meet (either because they do not qualify for financial assistance or do not want it to meet their needs) can request an independent personal budget, setting out what the local authority would spend on meeting their eligible needs.

As with actual personal budgets, local authorities must keep independent personal budgets under review. It must also reassess adults on independent personal budgets if they feel their circumstances have changed, and revise the budget accordingly.

7. Top Up Payments

Where the adult or a third party on their behalf, such as a relative, is making an additional payment (or a ‘top up’) in order to be able to secure the care and support of the person’s choice when this costs more than the local authority would pay, the additional payment should not form part of the personal budget because the budget indicates the costs to the local authority of meeting the needs. However, the information about the additional payment should be presented so that the total amount of charges being paid is clear and the link to the personal budget amount is understood.

8. Exclusions from the Personal Budget: Intermediate Care and Reablement

Regulations set out the cases or circumstances where the costs of meeting the needs of care and support do not have to be incorporated into the personal budget. Because both the care and support plan and personal budget are mechanisms to enable people to have greater choice and control over their care and support, there are not many instances where this exclusion will apply.

The Care and Support (Personal Budget Exclusion of Costs) Regulations 2014 set out that the provision of intermediate care and reablement services, for which the local authority cannot or chooses not to make a charge must be excluded from the personal budget. This will mean that where either intermediate care or reablement is being provided to meet needs, the cost of this must not be included in the personal budget.

Intermediate care services are usually provided to patients, often older people, after leaving hospital or when they are at risk of being admitted to hospital. The services are a link between places such as hospitals and people’s homes and between different areas of the health and social care system – community services, hospitals, GPs and social care.

Local authorities should not include additional elements that would not normally be classified as intermediate care or reablement into this exclusion. In fact the Act restricts the regulations into specifying only care and support which the local authority cannot charge for, or chooses not to charge for. This ensures that long term care and support will always be part of the personal budget. Also, broader rehabilitation services could be included to an individual to meet identified health needs as part of a joint personal budget across health and social care.

Intermediate care / reablement should usually be provided as a free, universal service under the Act, and therefore would not contribute to the personal budget amount. However, in some circumstances, a local authority may choose to combine either service with aspects of care and support to meet eligible or ongoing needs, which would require a personal budget to be developed. Removing the cost of provision of intermediate care / reablement from the personal budget in these scenarios ensures that the allocation of both services is applied uniformly across all local authorities.

In cases where intermediate care / reablement is provided to meet needs, either in isolation or combined with longer term care and support, the plan should describe what the package consists of and how long it will last. This will help the person understand what is being provided to meet their needs. However, the adult does not have a personal budget, unless there are other forms of care and support being provided. In these cases, the personal budget amount does not include the cost of intermediate care / reablement, which should be provided free of charge.

9. Calculating the Personal Budget

It is important to have a consistent method for calculating personal budgets that provides an early indication of the appropriate amount to meet the identified needs to be used at the beginning of the planning process. Local authorities should ensure that the method used for calculating the personal budget produces impartial outcomes to ensure fairness in care and support packages regardless of the environment in which care and support takes place, for example, in a care home or someone’s own home. Local authorities should not have arbitrary ceilings to personal budgets that result in people being forced to accept to move into care homes against their will.

There are many variations of systems used to arrive at personal budget amounts, ranging from complex resource allocation systems (RAS), to more ‘ready-reckoner’ approaches. Complex RAS models of allocation may not work for all client groups, especially where people have multiple complex needs, or where needs are comparatively costly to meet, such as in the case of deafblind people. It is important that these factors are taken into account, and that a ‘one size fits all’ approach to resource allocation is not taken. If a RAS model is being used, local authorities should consider alternative approaches where the process may be more suitable to particular client groups to ensure that the personal budget is an appropriate amount to meet needs.

Regardless of the process used, the most important principles in setting the personal budget are transparency, timeliness and sufficiency. This will ensure that the person, their carer, and their independent advocate if they have one, is fully aware of how their budget was calculated, that they know the amount at a stage which enables them to effectively engage in care and support planning, and that they can have confidence that the amount includes all relevant costs that will be sufficient to meet their identified needs in the way set out in the plan. The local authority should also explain that the initial indicative allowance can be increased or decreased depending on the decisions made during the development of the plan. This should prevent disputes from arising, but it must also be possible for the person, carer or independent advocate (on the person’s behalf) to challenge the local authority on the sufficiency of the final amount. These principles apply to both the indicative upfront budget and the final signed off personal budget that forms part of the care and support plan.

10. Personal Budget Principles

Three principles apply to both the indicative upfront budget and the final signed off personal budget that forms part of the care and support plan.

10.1 Transparency

Authorities should make their allocation processes publicly available as part of their general information offer, or ideally provide this on a bespoke basis for each person the authority is supporting in a format accessible to them. This will ensure that people fully understand how the personal budget has been calculated, both in the indicative amount and the final personal budget allocation. Where a complex RAS process is used, local authorities should pay particular consideration to how they will meet this transparency principle, to ensure people are clear how the personal budget was derived.

10.2 Timeliness

It is crucial when calculating the personal budget to arrive at an upfront allocation which can be used to inform the start of the care and support planning process. This indicative budget will enable the person to plan how the needs are met. After refinement during the planning process, this indicative amount is then adjusted to be the amount that is sufficient to meet the needs which the local authority is required to meet, or decides to meet. This adjusted amount then forms the personal budget recorded in the care plan.

10.3 Sufficiency

The amount that the local authority calculates as the personal budget must be sufficient to meet the person’s needs which the local authority is required to meet or decides to meet, and must also take into account the reasonable preferences to meet needs as detailed in the care and support plan, or support plan.

10.4 Costs

The personal budget must be an amount that is the cost to the local authority of meeting the person’s needs. In establishing the ‘cost to the local authority’, consideration should therefore be given to local market intelligence and costs of local quality provision to ensure that the personal budget reflects local market conditions and that appropriate care that meets needs can be obtained for the amount specified in the budget. To further aid the transparency principle, these cost assumptions should be shared with the person so they are aware of how their personal budget was calculated. Consideration should also be given as to whether the personal budget is sufficient where needs will be met via direct payments, especially around any other costs that may be required to meet needs or ensure people are complying with legal requirements associated with becoming an employer. There may be concern that the ‘cost to the local authority’ results in the direct payment being a lesser amount than is required to purchase care and support from the local market due to local authority bulk purchasing and block contract arrangements. However, by basing the personal budget on the cost of quality local provision, this concern should be allayed.

However, a request for needs to be met via a direct payment does not mean that there is no limit on the amount attributed to the personal budget. There may be cases where it is more appropriate to meet needs via directly-provided care and support, rather than by making a direct payment. For example, where there is no local market for a particular kind of care and support that the person wishes to use the direct payment for, except for services provided by the local authority. It may also be the case where the costs of an alternate provider arranged via a direct payment would be more than for what the local authority would be able to arrange the same support, whilst achieving the same outcomes for the individual.

In all circumstances, consideration should be given to the expected outcomes of each potential delivery route. It may be that by raising the personal budget to allow a direct payment from a particular provider, it is expected to deliver much better outcomes than local authority delivered care and support, or there may be other dynamics such as the preferred option reducing the need for travel costs, or out of hours care. In addition, efficiencies to the local authority (for example through an individual making their own arrangements) should also be considered. Decisions should therefore be based on outcomes and value for money, rather than purely financially motivated.

In cases where making a direct payment is a more expensive option to meet needs, the care and support plan should be reviewed to ensure that it is accurate and that the personal budget allocation is correct. The authority should work with the person, their carer and independent advocate (if there is one) to agree on how best to meet their care and support needs. It may be that the person can take a mixture of direct payment and local authority-arranged care and support, or the local authority can work with the person to discuss alternate uses for the personal budget. Essentially, these discussions will take place during the planning process and local authorities should ensure that their staff are appropriately trained to support personalised care and support, and to facilitate decision making.

11. Use of the Personal Budget

The person should have the maximum possible range of options for managing the personal budget, including how it is spent and how it is utilised. Directing spend is as important for those choosing the council managed option or individual service fund as for those choosing direct payments. Evidence suggests that people using council managed personal budgets are currently not achieving the same level of outcomes as those using direct payments, and in too many cases do not even know they have been allocated a personal budget. There are three main ways in which a personal budget can be deployed:

1. a managed account held by the local authority with support provided in line with the person’s wishes;
2. as a managed account held by a third party (often called an individual service fund or ISF), with support provided in line with the person’s wishes;
3. a direct payment.

In addition, a person may choose a ‘mixed package’ that includes elements of some or all three of the approaches above. Local authorities must ensure that whatever way the personal budget is used, the decision is recorded in the plan and the person is given as much flexibility and choice as is reasonably practicable in how their needs are met. The mixed package approach can be a useful option for people who are moving to direct payments for the first time. This allows a phased introduction of the direct payment, giving the person time to adapt to the direct payment arrangements.

Where ISF approaches to personal budget management are available locally, the local authority should provide people with information and advice on how the ISF arrangement works and any contractual requirements, how the provider/s will manage the budget on behalf of the person, and advice on what to do if a dispute arises. Consideration should be given to using real local examples that illustrate how other people have benefitted from ISF arrangements.

Where there are no ISF arrangements available locally, the local authority should consider establishing them and should consider any request from an adult for an ISF arrangement with a specified provider.

12. Pooling Personal Budgets

Local authorities should also give consideration to how choice could be increased by people pooling their budgets together. For example, this may include pooling budgets of people living in the same household such as an adult and carer, or pooling budgets of people within a community with similar care and support needs, or aspirations. Pooling budgets in circumstances such as this may deliver increased choice, especially where managed budgets are concerned. Developing networks of ‘budget poolers’ could help create dynamic groups of people working together to meet needs.

Evidence suggests that in most cases people need to know the amount of their budget, be able to choose how it is managed, and have maximum flexibility in how it is used to achieve the best outcomes. Local authorities should aim to develop a range of means to enable anyone to make good use of direct payments and where people choose other options, should ensure local practice that maximises choice and control (for example use of ISFs). Local authorities should also take care not to inadvertently limit options and choices. For example ‘pre-paid cards’ can be a good option for some people using direct payments, but must not be used to constrain choice or be only available for use with a restricted list of providers.

13. Use of a Carer’s Personal Budget: Where the Person being Cared for has Eligible Needs

13.1 Charges

A carer’s need for support can be met by providing care to the adult they care for. However, decisions on whom a particular service is to be provided to affect whether the service is chargeable and who is liable to pay any charges.  It is important that it is clear to all individuals involved:

• whose needs are intended to be met by a particular type of support;
• to whom the support will be provided directly and therefore who pays any charges due.

Where a service is provided directly to the adult needing care, even though it is to meet the carer’s needs, the adult is liable to pay any charge and has to agree to do so. Where the needs are met by providing care and support direct to the adult needing care, the charge cannot be imposed on the carer.

Decisions about which services are provided to meet carers’ needs, and which are provided to meet the needs of the adult for whom they care, will therefore impact on which individual’s personal budget includes the costs of meeting those needs. These decisions should be made as part of the care planning process (see Care and Support Planning), in discussion with the individuals concerned, and this includes consideration of whether joint plans (and therefore joint personal budgets) for the two individuals may be of benefit.

Local authorities should consider how to align personal budgets where they are meeting the needs of both the carer and the adult needing care concurrently. Where a person has eligible needs for care and support and has a personal budget and a care and support plan in their own right, and the carer’s needs can be met, in part or in full, by the provision of care and support to the person needing care, then this kind of provision is incorporated into the plan and personal budget of the person with care needs, as well as being detailed in the support plan for the carer.

14. Replacement Care

Replacement care may be needed to enable a carer to look after their own health and wellbeing alongside caring responsibilities and to take a break from caring. For example this may enable them to attend their own health appointments, or go shopping or pursue other recreational activities. It might be that regular replacement care overnight is needed so that the carer can catch up on their own sleep. In other circumstances, longer periods of replacement care may be needed, for example, to enable carers to have a longer break from caring responsibilities or to balance caring with education or paid employment. In these circumstances, where the form of the replacement care is essentially a homecare service provided to the adult needing care that enables the carer to take a break, it should be considered a service provided to the cared-for person, and must be charged to them, not the carer.

The carer’s personal budget should be an amount that enables the carer to meet their needs to continue to fulfil their caring role, and takes into account the outcomes that the carer wishes to achieve in their day to day life. This includes their wishes and / or aspirations concerning paid employment, education, training or recreation if the provision of support can contribute to the achievement of those outcomes. The manner in which the personal budget is used to meet the carer’s needs should be agreed as part of the planning process.

Local authorities must have regard to the wellbeing principle, as it may be the case that the carer needs a break from caring responsibilities to look after their own physical / mental health and emotional wellbeing, social and economic wellbeing and to spend time with other members of the family and personal relationships (see Promoting Wellbeing and Preventing, Reducing or Delaying Needs). Whether or not there is a need for replacement care, carers may need support to help them to look after their own wellbeing. This may be a course of relaxation classes, training on stress management, gym or leisure centre membership, adult learning, development of new work skills or refreshing existing skills (so that they might be able to stay in paid employment alongside caring or return to paid work) or pursuit of hobbies such as the purchase of a garden shed, or purchase of a laptop so they can stay in touch with family and friends.

15. Carers’ Personal Budgets: Where the Adult Being Cared For Does Not Have Eligible Needs

The local authority is able to meet the carer’s needs by providing a service directly to the adult needing care.  However, there may be instances where the adult being cared for does not have eligible needs and so does not have their own personal budget or care plan. In these cases, the carer must still receive a support plan that covers their needs and how they will be met. This would specify how the carer’s needs are going to be met (for example, via replacement care to the adult needing care) and the personal budget should be for the cost of meeting the carer’s needs.

The adult needing care does not receive a personal budget or care plan because no matter what the service is in practice, it is designed to meet the carer’s needs. However, it is essential that the adult requiring care is involved in the decision making process and agrees with the intended course of action.

In situations such as these, the carer could request a direct payment and use that to purchase replacement care from an agency, rather than using an arranged service from the local authority or a third party. The local authority should take steps to ensure that the wishes of the adult requiring care are taken into account during these decisions. For example, the adult requiring care may not want to receive replacement care in this manner.

If this type of replacement care is charged for (and it may not be), then it would be the person needing care that would pay, not the carer, because they are the direct recipient of the service. This is, in part, why it is important the person needing care agrees to receiving that type of care.

The decisions taken by the carer and the adult requiring care and the charging implications should be agreed and recorded in the support plan.

If a dispute arises and the adult refuses to pay the charge, the local authority must, as far as it is feasible, identify some other way of supporting the carer.

For the purposes of charging, the personal budget that the carer receives specifies the costs to the local authority and the costs to the adult based on the charging guidance (see Charging and Financial Assessment). In this case, ‘the adult’ refers to the carer, because they are the adult whose needs are being met. However, in instances where replacement care is being provided, the carer should not be charged; if charges are due to be paid then these have to be met by the adult needing care. Any such charges should not be recorded in their personal budget, but set out clearly and agreed by those concerned.

16. Appeals / Disputes

The local authority should take all reasonable steps to limit disputes regarding the personal budget allocation. This will include through effective care and support planning, and transparency in the personal budget allocation process. Additionally, many disputes may be avoided by informing people of the timescales that are likely to be involved in different stages of the process. Keeping people informed how their case is progressing may help limit the number of disputes.

Current complaints provision for care and support is set out in regulations. The provisions of the regulations mean that anyone who is dissatisfied with a decision made by the local authority can make a complaint about that decision and have that complaint handled by the local authority. The local authority must make its own arrangements for dealing with complaints in accordance with regulations (see Complaints).

17. Further Reading

17.1 Relevant chapter

Personalisation

17.2 Relevant information

Chapter 11, Personal Budgets, Care and Support Statutory Guidance (Department of Health and Social Care)

Quality Statement 2: Empowering People to Manage their Personal Budget (NICE)

See also Personal Budgets, in Case Studies, Resources