4.2.7 Shared Lives – Hull Adult Social Care APPP

ADDITIONAL LOCAL RESOURCES

November 2023 – This chapter, which provides an overview of shared lives, was added to the APPP.

1. Introduction

Shared lives is a regulated form of social care where an adult (aged 16+ in England) with care and support needs moves in with a registered shared lives carer and lives with them as part of their household in a family environment. It provides an alternative to supported living or residential care.

Shared lives is delivered locally through registered shared lives schemes which recruit shared lives carers and match them with adults who need support.

Shared lives schemes are run or commissioned by local authority adult social care services.

Shared lives carers may or may not provide the regulated activity of personal care.

Shared lives carers are approved and trained for that role by a shared lives scheme which is registered with Care Quality Commission (CQC). It is the scheme that is regulated, not the individual carers or their accommodation. The carers’ home are private premises, not ‘regulated premises’ and so are not subject to inspection by the CQC.

Health and safety checks should be carried out on the accommodation, along with risk assessments as appropriate before an adult is placed.

2. Types of Provision

There are different types of support available for adults in shared lives, dependent on need, circumstance, preference, and availability.

Live In: the adult supported moves in with their shared lives carer and lives as part of their family. The shared lives carers provide accommodation which the adult supported ‘rents’ from the carer (this is covered in the shared lives licence agreement). The adult will have their own key to the home.

Day Support: the shared lives carer and the adult being supported could spend time at the carer’s house, developing independent living skills such as cooking and activities of daily living, or doing things in the community together such as shopping or day trips.

Short Breaks / Respite: where the adult has overnight stays (for anything from one night to a few weeks) at the shared lives carer’s home, perhaps while their parent / family carer or live-in shared lives carer has a break from their caring role. This short break could also be to support an adult when they leave hospital, before they are able to manage to return to their own home.

Day support and short breaks can also be an option for an adult to get used to spending time with a shared lives carer, where live-in support may be in consideration as an option for the future, such as for an adult with a learning disability who lives with ageing parents.

3. Shared Lives Agreements

Agreements setting out the details of the shared lives arrangement will be signed by all relevant parties. This may include the following.

3.1 Shared lives carer agreement

This is an agreement about the role of the carer, between the shared lives scheme and the carer. It may include:

the self-employed status of the shared lives carer;
the obligations of the scheme and the carer;
payment arrangements;
insurance requirements;
termination of the arrangement;
data protection and confidentiality.

3.2 Arrangement agreement

This agreement lays out the terms and conditions, responsibilities and expectations of everyone involved in a shared lives arrangement. It may include:

the type of shared lives arrangement (live-in, short break or day support);
house rules for the shared lives carer’s home;
the care and support that a shared lives carer will be providing;
any responsibilities and expectations for the shared lives carer, the adult being supported, the shared lives scheme and the local authority to meet.

3.3 Licence agreement

A licence agreement is only required for live-in shared lives arrangements. This is a written agreement between the shared lives scheme, the shared lives carer and the adult being supported, and should be signed together with the shared lives arrangement agreement and the shared lives carer’s agreement. It may include:

how the adult wishes to be supported;
house ‘rules’ such as ensuring the privacy of the adult supported, preparing meals, and keeping bedrooms and shared areas of the home tidy.

Shared lives carers must sign the shared lives carers agreement, the arrangement agreement and the licence agreement to say they understand their role and the role of the scheme.

Adults being supported should, if required, be provided with assistance to read and understand all parts of the relevant agreements.

4. Recruitment, Assessment and Approval and Training of Shared Lives Carers

Shared lives schemes may set their own criteria for carers, which are likely to include carers:

are at least 18 years-old;
have a spare bedroom and enough space for another adult to live (if providing live in support);
are full-time residents in the UK or have leave to remain;
are able to give the time to support another adult.

Each shared lives schemes will have its own process for recruitment, assessment and training of shared lives carers. The process is likely to include:

application form;
home visits by a shared lives worker;
meeting other local shared lives carers and adults supported by shared lives;
completion of an assessment including:
- finding out why they want to become a carer;

- learning about the applicant’s household and daily life;
- assessing their suitability to become a shared lives carer, for example knowledge, skills and current or previous work experience;
- a full health and safety assessment of the prospective carer’s home, and approval from the applicant’s landlord / mortgage provider;
- Disclosure and Barring Service (DBS) check;
- personal and /or professional references;
- a report from their GP.

Once the assessment is completed, an assessment report will be presented to an independent shared lives panel.

The panel provides independent scrutiny and a quality assurance process to the scheme in relation to assessments for new shared lives carers, as well as the ongoing approval and de-approval of existing shared lives carers.

If the applicant is approved as a shared lives carer, the panel will specify the terms of approval, that is the type of placement the carer is approved to offer and how many adults they are approved to support.

Initial and refresher training will be provided relevant to the carer’s terms of approval. This is likely to include safeguarding adults, first aid, medication management, food safety, infection control, information governance, positive behaviour support and moving and handling, as well as additional training as required to enable them to meet the needs of the adult they will be supporting.

Foster carers who wish to continue caring for the young person living with them will have to complete the approval process to become a shared lives carer.

5. Referral

The shared lives service is available to anyone over the age of 18, who has been assessed under the Care Act 2014 with a care and support needs assessment and needs support to live in the community (see Assessment and Self-Assessment chapter).

Referrals are usually made by social workers or health care professionals, directly to the shared lives scheme, in agreement with the adult or their family member/s. Many schemes welcome an informal discussion about the potential referral.

Each shared lives scheme will have its own referral form. Requirements are likely to include:

Care Act assessment;
care and support plan (see Outcome Focused Support Planning chapter);
other relevant documentation such as mental capacity assessment or risk assessment;
information on funding for the shared lives arrangement.

The shared lives scheme should provide information on:

how referrals are managed;
next steps and timescales following receipt of a referral;
how the scheme will meet with and get to know the adult being referred;
what happens if a scheme is unable to accept a referral or does not have any suitable shared lives carers available;
whether the scheme accepts emergency / urgent referrals and, if so, how these are dealt with;
how data is stored and used.

6. Matching and Introduction

6.1 Matching

A shared lives scheme matches an adult in need of support with a suitable approved shared lives carer. Adults will be supported to make an informed decision on being supported by shared lives and the carer who will provide their support. Adults will be involved in choosing and meeting their shared lives carer.

Considerations when matching a shared lives carer with an adult being supported include:

the wishes and feeling of the adult being supported;
any risk assessment / risk management plan;
the skills, knowledge, and experience of the shared lives carer/s;
personal interests of the carer and the adult being supported;
the location of the home of the shared lives carer/s;
the facilities and accommodation the shared lives carer(s) can offer the adult;
any cultural and / or religions considerations.

6.2 Introductions

Introductory visits may be arranged to enable the adult being supported and the potential carer to get to know one another, and to allow them to make a well-informed decision on whether the arrangement could be a suitable one.

6.3 Information sharing during the matching process

Shared lives carers should be provided with sufficient information during the matching process to enable them to make an informed choice about potential risks to themselves and others in their household. This includes any risks identified following a risk assessment and any risk management plan.

This right of the potential shared lives carer to information should be balanced against the interests of the adult seeking support and should be in line with principles of confidentiality and data protection. The information disclosed must be accurate, relevant and proportionate, with no more information being disclosed than is necessary.

For more information see Information Sharing and Confidentiality and Data Protection chapters.

Information about the adult being supported should only be made available with their permission (or, as appropriate, the permission of their family members / advocate). They should be made aware that withholding relevant information may hinder their application.

7. Emergency Shared Lives Arrangements

Referrals made in emergency situations may lack information about the care and support needs and personal circumstances of the adult being supported and may provide insufficient time for a detailed matching and introductions process.

Shared lives schemes which accept emergency arrangements must have a clear and consistent approach to how emergency referrals, matching and introductions will be managed. For instance, sufficient information must be available regarding any identified risks and how these will be managed.

8. Risk Assessment

9. Support, Monitoring and Reviews

9.1 Support

The shared lives scheme will provide ongoing support for shared lives carers, to make sure they have the resources, skills, and knowledge to fulfil their responsibilities and meet the needs of the adults they are supporting.

Support provided by schemes for shared lives carers is likely to include:

induction and refresher training;
access to support from the shared lives scheme, including out of hours support arrangements;
regular telephone calls and monitoring visits from their named shared lives worker and the social worker for the adult they are supporting;
regular reviews of the adult’s support plan and shared lives arrangement agreement;
the provision of a shared lives carer’s handbook containing essential information about the aims and objectives and operation of the service and reference documents including copies of relevant guidance and procedures;
regular breaks for shared lives carers who are providing long-term accommodation and support for an adult;
facilitating peer support between shared lives carers.

9.2 Monitoring and review

Shared lives schemes need to ensure that shared lives carers continue to meet the needs of the adults they are supporting.

Schemes will carry out a full review of carers’ work and approval status at least once a year (more often if necessary) which includes a learning and development plan for the coming year.

The annual review of a shared lives carer by the scheme will cover:

the shared lives carer’s work with each adult they have been supporting;
feedback from the adult supported, their family or representative, their social worker and other relevant professionals;
an overview of the shared lives carer’s achievements during the year;
any outstanding objectives or actions from the previous year;
a review of the records they have been keeping;
evidence of any continuous personal development as well as their learning and development needs for the coming year;
their accommodation and updating of any risk assessments;
their current health, lifestyle, and family circumstances.

Additional reviews will be carried out:

at the end of the shared lives carers’ probationary period;
if any serious complaints or concerns have been expressed about the working practices or conduct of the shared lives carers;
if an allegation of abuse or neglect has been made against them and upheld after investigation;
if their health or family circumstances have changed significantly.

If the review of the shared lives carers indicates that there may be reasons to change or end their approval, the review report will be presented to the shared lives panel for a recommendation, which will inform a decision by the registered manager or other senior manager. The shared lives carers will be given information about their right to appeal against the decision and how to do this.

10. Funding and Finance

The shared lives arrangement may be funded by the local authority, NHS or self-funded by the adult needing support. The cost of the shared lives arrangement will usually be determined by the banding (support) level that the adult would come under within the scheme. If the adult is self-funding, they will need to understand the full cost of the shared lives arrangement and agree to fund this themselves.

This funding goes through the shared lives scheme, who then pay the shared lives carers a fixed fee for the care and support they provide.

Shared lives carers who provide live-in arrangements are also paid a rental element, usually from the benefits received by the adult being supported.

Shared lives carers are classed as self-employed.

Shared lives carers who offer live-in, respite, day support or a combination of these shared lives arrangements are entitled to Qualifying Care Relief for income tax purposes. If carers’ shared lives income in a tax year is less than the qualifying amount, they don’t have to make any class 4 national insurance contributions or pay any income tax on shared lives income.

See Qualifying care relief for carers (Self Assessment helpsheet HS236) – GOV.UK (www.gov.uk)

Shared lives carers must keep records of finances for the adult supported and present them when requested.

11. Medication

Adults should be supported to take their own medicines when they want to and if it is safe to do so. Shared lives schemes should work with adults and their shared lives carers to develop a self-management plan for medicines. This plan must consider the risks, values and benefits.

Shared lives carers may administer or support an adult to take their medicines. They must keep records in line with NICE guideline NG67. This includes details of all support for prescribed and over the counter medicines, such as:

reminding an adult to take their medicine;
giving the adult their medicine;
recording whether the adult has taken or declined their medicine.

Adults have the right to refuse to take a medicine if they have the mental capacity to make that decision.

Shared lives schemes should ensure that carers have suitable training to support an adult to manage and store their medicines safely and effectively, and that they know how to raise concerns about medicines and to report medicines incidents. See Reporting medicine related incidents (Care Quality Commission)

Shared lives carers do not need a separate medicines fridge or a controlled drug cupboard. Adults should be supported to store medicines in a way that meets their individual needs and the manufacturer’s requirements. Unwanted or waste medicines can be returned to a community pharmacy for safe disposal.

12. Personal Care

Some adults will require support from their shared lives carer to meet their personal care needs. This may include support with aspects of daily living such as washing, using the toilet, dressing, oral care, eating and drinking. Shared lives carers must receive information and training to enable them to provide personal care safely and sensitively. Support for personal care provided by the carer must be in accordance with the adult’s support plan and any risk assessments. The support plan will be regularly reviewed as part of the shared lives arrangement and will wherever possible be agreed with the adult being supported.

13. Mobility Aids and Equipment

When an adult is referred to shared lives, their care and support plan will set out (where relevant) information on assistance with mobility and any equipment or aids they need. Shared lives carers must be provided with training on any equipment, a risk assessment must be undertaken and a risk management plan be completed.

Equipment must be regularly inspected and maintained in accordance with the manufacturer’s instruction. The use of aids and equipment will be kept under review as part of the adult’s support plan and reassessments arranged when necessary.

14. Safeguarding and Allegations

The registered shared lives scheme must arrange for shared lives carers to receive initial and ongoing safeguarding training, and ensure that they know how to access the local multi-agency safeguarding procedures (link)

Shared lives carers must report any safeguarding concerns to the shared lives scheme as soon as possible. If a crime is suspected, the police must be informed. The immediate safety of an adult supported by shared lives should be ensured.

The shared lives scheme is responsible for ensuring that all safeguarding complaints and allegations are dealt with in accordance with the multi-agency safeguarding adults procedures.

The shared lives scheme is also responsible for informing the CQC of all allegations of abuse or neglect. See Notifications (Care Quality Commission).

The shared lives scheme should keep the adult being supported and / or their advocate informed of the progress of any safeguarding investigation and should provide support to the carer throughout the investigation.

15. Transitions

16. Record Keeping and Information Sharing

Shared lives carers will be given training about record keeping and the importance of confidentiality.

16.1 Record keeping

For more information see Case Recording: Principles, Access to Records and Data Protection chapters.

Shared lives carers and adults being supported will be provided with copies of relevant information such as the adult’s support plan and shared lives carer agreement / arrangement agreement / licence agreement.

The carers will also record significant events during the arrangement, such as:

the dates of visits and conversations with their shared lives worker and any decisions or actions taken as a result;
any accidents or serious illnesses or other adverse events affecting the adult;
any concerns or complaints about the services the adult receives or about their health and wellbeing, and actions taken.

Where possible the carers will involve the adult being supported and / or their representative in what is being recorded.

16.2 Information sharing

In order to provide co-ordinated support, the shared lives scheme may co-ordinate with other agencies. This may involve sharing and receiving relevant information.

The adult’s confidentiality will be respected, and personal information will only be shared with their agreement or if it is necessary to provide safe care or to prevent harm to the adult or to others.

For more information see Section 6.3, Information sharing during the matching process.