Vous êtes sur la page 1sur 14

The shared life of my choice

Tailored to your changing life ............................................................................................................ 2 Choice and decision-making in Shared Lives ................................................................................... 5 Risks and boundaries ....................................................................................................................... 6 The use of Personal Budgets and Direct Payments. ........................................................................ 8 Cost-benefit....................................................................................................................................... 9 Its not Shared Lives if..................................................................................................................... 11 Actions for providers and commissioners ....................................................................................... 14

What is Shared Lives?


Shared Lives is where an individual or family is paid a modest amount to include an older or disabled person in their family and community life. In many cases that person goes to live with a Shared Lives carer and their family, although Shared Lives is also used to support people living in their own homes, as day support, as respite care for unpaid family carers, as home from hospital care and as a stepping stone for someone who wants to get their own place. There are around 10,000 SL carers in the UK, of which 3,800 are NAAPS members (www.naaps.org.uk). Shared Lives carers are recruited, trained and approved by a Shared Lives scheme, which is regulated by that nations care regulator. Shared Lives is unique in regulated adult support, in that Shared Lives carers and those they care for are matched for compatibility and then develop real relationships, with the carer acting as extended family, so that someone can live at the heart of their community but in a supportive family setting. The Care Quality Commission (CQC), the governments social care inspectors for England, gave 38% of Shared Lives schemes the top rating of excellent (three star). This is nearly double the percentages for other forms of care. 83% of all forms of support were rated good or excellent, whereas 95% of Shared Lives schemes were good or excellent. Uniquely, no Shared Lives scheme has been rated as poor for the last two years. The inspection regimes in the other nations dont allow for explicit comparisons of this kind, but rate Shared Lives strongly. NAAPS is the UK network of very small, family and community based care and support solutions for older and disabled people: it is all about ordinary people and families contributing to the care and support of local people, sometimes in extraordinary ways. As well as 4,000 Shared Lives carers and schemes, our membership includes Homeshare and micro-enterprises in social care.

Inter-dependence
Independent living has become synonymous with personalisation. But what is independence? Is it the wish of many young adults to establish a separate identity from their

parents, with their own house, car and job? The desire to become a parent and establish a family of your own? Or the hope of the older person experiencing their first support needs to remain in their own home, living with dignity with partner or family? One things for sure: if its one size fits all, its not really independence, just a new box to fit into. Shared Lives helps people to live at the heart of their communities, as part of an ordinary household. Its for anyone who wants to live independently, but not on their own. Some people aim to live in a Shared Lives arrangement for a few months to gain independent living skills, before moving on to a place of their own, but for others, their goal is to stay where they are. A good Shared Lives carer is always looking for opportunities for the people they support, but people do not necessarily want to feel that they are on a production line towards living alone; for many, the goal is a sense of belonging and to feel settled with the people and community of their choice. Nigel and Stephen, both in their fifties, spent most of their lives in residential care. Now they share Brian and Vals family home in Cornwall. Since moving in, they have started swimming lessons with Brian in preparation for a holiday in Majorca. They have also spent weekends camping and both men have discovered a love of vintage tractors and engines, as the family are members of Kernow Old Vehicle Club. Val says, "Having Nigel and Stephen in our home, means they can have normal lives. They both like gardening, so we are getting an allotment. And I am teaching them how to cook and look after themselves. We are always busy doing things from blackberry-picking and taking the dogs for a walk to watching boats and going to steam rallies." Both men continue to take part in college courses and social clubs for people with disabilities. However, they also now enjoy playing pool every fortnight at the local pub and are regulars at vintage vehicle functions and rallies across the south-west. Read Nigel and Stephens full story in the Guardian: http://bit.ly/eqritE One of the benefits of this approach is that everyone involved is seen as having something to contribute to those around them. Shared Lives carers say one of the most rewarding parts of their role is watching individuals who have been uncommunicative or shy transform as they gain confidence and a sense of belonging. Alison and Mark run a pub in a seaside town. Neil, who has a learning disability, spent a lot of time in pubs and became a regular at Alison and Marks. They were concerned about his drinking, his behaviour and increasingly, his safety. He even began sleeping on their doorstep. Alison and Mark found out about Shared Lives and after training and approval became Shared Lives carers. For the first time, Neil now looks people in the eye. He takes care of his appearance and controls his drinking; people say they can now understand his speech. He has achieved long-held ambitions like going to Wembley. Neil says Now I know what I wanted: what I wanted was a family. Alison says He brings a whole new dimension to our lives, we get as much pleasure as he does in our family. We are thinking of getting out of the pub trade to become full time carers.

Tailored to your changing life


Shared Lives carers are taking innovative approaches to helping people achieve their goals. A number of Shared Lives carers now provide Shared Lives support in their family home as well as supported living in a nearby or adjoining property. This means that people can NAAPS UK Ltd 2010. www.naaps.org.uk www.communitycatalysts.co.uk | 2
Registered charity: 1095562. Registered company: 4511426

progress to a more independent setting, but retain the sense of security. Many Shared Lives relationships are lifelong, regardless of the amount of care and accommodation being provided. Karina is a Shared Lives Carer who also rents out a second home to adults with mental health problems. Elise wanted to move to a more independent lifestyle and shared Karinas two bedroom property with another young woman. Karina provided the type and level of support chosen by Elise, until she was ready to move on to her own flat. It was unlikely that she would have made the transition without this interim step. Housing Benefit funded the accommodation and Elises personal budget funded the support. In the past, there was less focus on developing independent living skills in some Shared Lives arrangements. For instance, Shared Lives carers are paid to cover all of the accommodation and food costs, which can make it hard to support the person living in Shared Lives to develop budgeting skills. But schemes and Shared Lives carers are finding creative ways around this. One is using stars to help an individual keep track of how independently they are completing identified household tasks in the run up to a planned move to her own place. A worker in one scheme says: One Shared Lives carer has organised a reimbursement system for our service users so they can shop for food without being out of pocket. They make nearly all their own meals and help with household tasks. I am so amazed at how well they have done in six months since moving in. It is a credit to the carer, especially as both had lived in a rehabilitation unit until recently. Creative use of the Shared Lives model and values means that an individual can, if they wish, make a gradual progression from live-in Shared Lives, through annex support, towards a place of their own, perhaps alongside ongoing Shared Lives day support and respite breaks, all the time maintaining a consistent, long-term relationship with the same Shared Lives carer or family.

For older people, Shared Lives is being developed as a personalised, affordable and flexible form of intermediate care or re-ablement. Someone who is admitted regularly to acute care can receive varying levels of support, accommodation and respite from the same Shared Lives carer and their family, giving them a much better chance of regaining their independence after each hospital stay. This model also works well for people with acute mental health problems who are experiencing a crisis or temporary deterioration in their mental health. Offering Shared Lives as an alternative to a hospital admission in Hampshire NAAPS UK Ltd 2010. www.naaps.org.uk www.communitycatalysts.co.uk | 3
Registered charity: 1095562. Registered company: 4511426

appears to speed up recovery rates and helps people to stay engaged with their community whilst unwell. Leeds City Council Shared Lives service specialises in short breaks and day support provision. They have developed the service to offer medium as well as short term arrangements, for assessment and to support transition to adulthood or independence. The service provides emergency support following family bereavement, or in reaction to safeguarding concerns. The supportive family environment can offer more intensive emotional support than residential care. Leeds has supported one full time breaks carer to build a fully accessible extension which widens accessibility of the service. Leeds have calculated that this short breaks Shared Lives carer will deliver savings to the council of 30k per year (less the capital investment), based on comparing costs with the costs of equivalent day provision for people with learning disabilities. The saving would be more modest for support for older people. Shared Lives services are at different stages in ensuring that Shared Lives is delivered in a way that promotes independence, choice, meaningful activities and opportunities to progress to other settings, as well as the opportunity to establish a long term home and community. Shared Lives providers and commissioners should consider reviewing the outcomes being achieved by Shared Lives and develop an action plan. Consult with people who currently use, provide and organise Shared Lives in your area to review the development of Shared Lives. The table below suggests some characteristics of Shared Lives services which are aligned with the goals of personalisation and some of those which are not. Highly personalised Shared Lives People are regularly enabled to set and revise personal goals and have clear action plans for achieving them. People access independent advocacy and peer support and have a clear voice in the development of the Shared Lives service. People have many opportunities to take part in meaningful activities, volunteering, membership of clubs or activities not specifically for disabled people and paid employment. People have many unpaid relationships, pursuing friendships and sexual relationships as they wish. People can progress to different settings, or stay put, as they prefer and their choices and support plans are reviewed regularly. Matching is seen as central to Shared Lives. People who use Shared Lives have a strong sense of belonging within their household and relationships. The scheme promotes and can be funded via personal budgets and Shared Lives carers understand personal budget approaches. The service has an open referral system and is keen to support people with all kinds of needs, diagnoses and labels. NAAPS UK Ltd 2010. Shared Lives in need of development People who use Shared Lives have little access to independent advocacy, peer support or ongoing care management. Shared Lives carers feel they are left to advocate on behalf the person they support. People spend much of their day within the Shared Lives household with few opportunities for outside activities. People are not visible or active within their community and have few unpaid relationships. They access mainly segregated activities. There is an automatic assumption that people using Shared Lives for support and accommodation will stay there forever. People feel like tenants or service users within their homes. Shared Lives carers are encouraged to fill empty beds as quickly as possible. The service can only be commissioned through traditional routes.

The scheme sees itself as being just for those belonging to one or two client groups.

www.naaps.org.uk www.communitycatalysts.co.uk | 4
Registered charity: 1095562. Registered company: 4511426

Highly personalised Shared Lives Shared Lives carers are supported to take a structured approach to helping people to develop independent living skills and take risks.

Shared Lives in need of development Shared Lives carers are risk-averse, access little training on delivering personalised support and independent living skills.

Choice and decision-making in Shared Lives


Enabling people who use Shared Lives to make choices requires the commitment of: the individual and their family and/or advocates; the Shared Lives carer; the Shared Lives scheme workers, managers and commissioners; the individuals care manager or social worker.

Each has a distinct role: The individual should be in the lead. They may need independent advocacy to be able to express their views clearly and confidently. The Shared Lives carer has a role in helping the individual in all aspects of their life, including building their confidence and identifying and working towards their goals. But Shared Lives carers cannot provide truly independent advocacy. The Shared Lives scheme helps to draw up, monitor and review the Shared Lives carer agreement and also provides the Shared Lives carers support and supervision. The Care Manager supports the individual to access their right to a community care assessment and a re-assessment whenever there is a significant change in their circumstances or needs.

The triangular relationship between Shared Lives carer, Shared Lives worker and care manager in supporting an individual, working with their family and independent advocacy.

The community care assessment process may be followed by a resource allocation process in which the resources available to the individual are determined and the individual helped to access appropriate support. Where a Shared Lives arrangement is long term, there has been a tendency for care management to be withdrawn. There is also a shortage of advocacy services in many areas, which can only be rectified by strategic leadership and investment from senior managers and commissioners. However, even those in stable, long-term Shared Lives arrangements need

NAAPS UK Ltd 2010.

www.naaps.org.uk www.communitycatalysts.co.uk | 5
Registered charity: 1095562. Registered company: 4511426

access to care management and support to make choices. Peoples goals can change over time. And whilst Shared Lives can provide family life, it does not necessarily meet all of a persons support needs: they may wish to pursue activities or employment outside of the family home, for instance. As well as seeking to make trained and specialist advocacy available when needed for major and complex decisions, Shared Lives schemes should explore developing peer-advocacy and befriending approaches to enabling people who use Shared Lives to develop their opinions and have their voices heard. Local user-led organisations may be able to help with this. ASA in Lincolnshire is developing a Lifestyle Brokerage service alongside its Shared Lives service, which will help people to make a wide range of choices, accessing services in addition to or instead of Shared Lives where appropriate. It will provide ongoing face to face support including advocacy where required and promote the development of third sector provision to meet a wider range of peoples choices. www.asaorg.co.uk/Lifestyle_Brokerage Many peoples well being and quality of life improves dramatically when they start to use Shared Lives. This does not necessarily mean that they should be moved on to another setting or a cheaper package of support. Re-assessments should look at the persons remaining underlying needs and at the reasons for their progress to ensure that the very reasons for their new quality of life are not inadvertently removed from them. Furthermore, recent High Court judgements have confirmed that a Shared Lives arrangement can often be regarded as a persons family and private life, as defined and protected by the Human Rights Act. In England and Wales, no one should be moved from their family home against their wishes or when they are unable to express an informed choice, without undertaking a Mental Capacity Act assessment, involving an Independent Mental Capacity Advocate (IMCA) as appropriate and if necessary seeking the approval of the courts. In Scotland, the Adults with Incapacity (Scotland) Act 2000 is the relevant legislation, (unless the adult is at risk, in which case a removal order can be sought from a Sherriff under the Adult Support and Protection (Scotland) Act 2007. Currently Northern Ireland does not have mental capacity legislation so mental capacity issues are dealt with under common law. Legislation is proposed for 2011. See: www.dhsspni.gov.uk/dhssps-corporate-business10-11.pdf.

Risks and boundaries


Shared Lives has an excellent safeguarding record, reflected in its exceptional inspection results 1*. The approach is a complex and subtle mix of informality and professionalism, balancing the achievement of high professional standards with avoiding focusing exclusively upon risk. One Shared Lives carer described what they do as a family-based professional service. This achieves much of the flexibility of the Personal Assistant model of support, but without the risks of isolation and a lack of supervision (see Its not Shared Lives if... below).
The Care Quality Commissions last ever annual report giving quality (star) ratings to providers of adult social care in England (November 2010) showed that, in 2010, 38% of Shared Lives schemes received the top rating of excellent (three star). This is nearly double the percentages for other forms of care. 83% of all forms of support were rated good or excellent, whereas 95% of Shared Lives schemes were good or excellent. No Shared Lives scheme has been rated as poor for the last two years, whereas all other forms of care have a small percentage of poor services. In 2009, the Care Commission inspection graded 85.7% of those Shared Lives schemes inspected as either good or very good for care & support (Scottish Commission for Regulation of Care 2010). The Wales Shared Lives inspection report for 08-09 was very positive and reported a significant overall improvement in the quality of services. Engagement of service users was highlighted as extremely positive. There were no safeguarding concerns relating to the support provided. The development and quality of schemes is improving but remains variable, with great potential for less developed schemes to learn from the best.
1 *
1

NAAPS UK Ltd 2010.

www.naaps.org.uk www.communitycatalysts.co.uk | 6
Registered charity: 1095562. Registered company: 4511426

Becoming an employer can also be challenging and involve risks and liabilities. Because self-employed Shared Lives carers are paid by the council or Shared Lives scheme, not directly by the person using the service, Shared Lives relationships can remove some of the risks and tensions which can be present in employer/ employee relationships. Shared Lives arguably gives participants a lot more space in which to create their own kind of family and community life than other forms of care, which have more clearly defined professional boundaries. This places a great responsibility upon Shared Lives carers to think carefully about the relationship they have with the people they support and to liaise regularly and openly with Shared Lives workers and managers when challenges and grey areas arise. Maintaining a thoughtful, case by case approach to managing risk relies upon a wellresourced Shared Lives infrastructure and thinking on these issues constantly develops, with Shared Lives workers across the UK discussing issues with each other via NAAPS email groups, meetings and conferences. In return, Shared Lives workers should respect participants right to family life without undue intrusion, or the blanket application of overly rigid rules. And managers should not have unreasonable expectations of Shared Lives carers, which could pose a risk to the sustainability of the arrangement. Some Shared Lives carers are feeling that their ability to create positive family life is under pressure from cuts in day service provision: They rely on us feeling guilty and providing free support when previously the people with us had support during the day. A scheme worker put it like this: were in danger of recreating bad family situations if we dont fund a proper service. A Shared Lives carer says: Were not providing ordinary life if we dont have lives of our own Another source of risk within Shared Lives, as with any service, is poor information sharing. It is essential that Shared Lives carers are supplied with the information they need to provide support safely and effectively and to ensure the safety of others, including children, in their household. Safeguarding incidents are relatively rare within Shared Lives, but an incident in Wales, in which a Shared Lives carers child was put at risk through poor information-sharing with both the Scheme and the carer led to a review in 2009. Referrers must be made aware of the need to share information appropriately. Of course, contact with children is a normal part of family life and can be a very positive experience for the person living with them as the case study below illustrates. Jim moved from residential care to a Shared Lives household. There had been a big battle about the move, because many professionals involved did not think it would be safe or manageable for the man to live in an ordinary household. He was considered challenging and spent most of his time standing outside his care home, in all weathers. Since he moved in with them, the Shared Lives carer and partner have had a baby, which provoked further anxiety about the individuals ability to cope with the upheaval and change. But the Shared Lives worker says: When I visited last, Jim came into the living room, put on his slippers, kissed the baby and settled down in his favourite chair. It was lovely to see him so at home. Being part of a Shared Lives household can also be very positive for the children of Shared Lives carers. Many Shared Lives carers had parents who were carers. This Shared Lives carers (now grown-up) daughter wrote the eulogy for the funeral of a gentleman who used Shared Lives: "When Michael took residence in our family home I was a young 14 year old, I wasn't too sure what to expect of him but was told by my parents that he was a lovely guy. They were right, all my thoughts were set aside, Michael was a fun loving individual and soon became part of the family and a lifelong friend.

NAAPS UK Ltd 2010.

www.naaps.org.uk www.communitycatalysts.co.uk | 7
Registered charity: 1095562. Registered company: 4511426

There are many shared moments, birthdays, outings, holidays, parties where he never failed to take to the dance floor. Michael made good use of what he had, never turning away, reminding us that life is for living and each moment is precious, so that we make good use of what we have and never forgetting to have fun along the way."

The use of Personal Budgets and Direct Payments.


Shared Lives is compatible with personal budget funding approaches. The diagram illustrates three ways of taking a personal budget:

If the Shared Lives scheme is delivered by an independent organisation, Shared Lives can be purchased from the organisation using a Direct Payment. Many Shared Lives schemes are delivered by councils themselves (in-house) which means that, in England, it is not lawful to pay for them using a Direct Payment. The solution to this is simply to take a mix and match approach: the individual can opt to have some or all of their personal budget allocated by the council to their Shared Lives service. Any allocation which is left could be taken as a Direct Payment, managed budget or individual service fund (see diagram above) as the individual prefers. Where someone using Shared Lives has a personal budget or some money of their own with which to purchase support in addition to their Shared Lives package, they may need support to manage their money and any other support contracts they enter into. This could be offered by a broker or someone who is named as a Suitable Person, who takes on the legal responsibility for managing their money and for any contracts or employment arrangements entered into. Agreeing to be named as the individuals Suitable Person could place the Shared Lives carer in a complex position. If the Shared Lives care itself was paid for through part of a Direct Payment, and the Shared Lives carer was also managing that money, they would effectively be managing themselves, via the Shared Lives scheme, which may not be tenable, or lawful.

NAAPS UK Ltd 2010.

www.naaps.org.uk www.communitycatalysts.co.uk | 8
Registered charity: 1095562. Registered company: 4511426

One of our carers found some day activity for the person she supports full time. The social worker has the expectation that the carer will manage the service user's personal budget to make sure that the council is invoiced for the correct amount and to ensure the budget is not overspent. If the money was not used to purchase Shared Lives, but was used to purchase additional support from a Personal Assistant, this would be equally problematic. Shared Lives carers can name Support Carers who are approved to help them provide support, but they are not allowed to employ somebody to deliver the care and support they have agreed to provide. This is one way in which they are distinguished from the proprietors of small residential care homes. But if a Shared Lives carer is named as a Suitable Person, in order to manage an individuals Personal Assistant, it would be difficult, legally speaking, to distinguish this arrangement from the Shared Lives carer employing someone to help them provide care. Direct Payments are not always used to employ a personal assistant. For instance, they may also be used to purchase services, activities or transport. If a Shared Lives carer was asked to manage a Direct Payment which was used to purchase one of these things, it would be very important for the Shared Lives carer to be clear about their additional duties and to think through the risks and any conflicts of interest. A Shared Lives carer managing an individuals Direct Payment may find themselves in control of a large part of the service users life. They would be legally responsible if there was a problem with the purchased arrangement. Some Shared Lives carers would find it very challenging to take on this extra responsibility and may need to review their public liability insurance. Their role and the support and training they would be able to access would need to be clearly set out in their agreement with the Shared Lives scheme. In considering such arrangements, it is important to remain focused on the end goal of personalisation, which is to offer choice and control, not necessarily to find new ways to manage money. There are alternatives to the Shared Lives carer managing the money of someone who lives with them, such as: The individual could receive support from a broker who helped them to make choices about the whole of their budget allocation, including the portion of it spent on Shared Lives. The individual may have a family member or someone else to whom they are close and would wish to name as a Suitable Person to manage a budget taken as a Direct Payment. The individual may have a Trust or Circle of Support to help manage a Direct Payment. The individual could ask the council or another organisation to manage their personal budget.

Cost-benefit
NAAPS and Improvement and Efficiency South East have produced a Business Case for Shared Lives available at www.naaps.org.uk, which demonstrates the substantial savings created by using Shared Lives rather than other forms of support: 10 new long term arrangements generate pa savings of between 23,400 (older people) and 517,400 (learning disabilities). A new scheme for 85 people costs 620k over 5 years, with savings of nearly 13m (reduced use of more costly alternatives).

NAAPS UK Ltd 2010.

www.naaps.org.uk www.communitycatalysts.co.uk | 9
Registered charity: 1095562. Registered company: 4511426

The savings are illustrated by the case studies below, which were the result of a review of high cost care arrangements carried out in South Tyneside, which looked at whether alternative approaches could achieve better outcomes and savings. Savings arise for a number of reasons: Shared Lives carers are available for support out of hours. Providing reliable out of hours cover is very expensive in other settings. This is not to say that it is reasonable to expect Shared Lives carers to actively provide 24/7 support or to go without regular breaks. Nor do most individuals wish to spend their whole time in the company of one person. Shared Lives carers typically provide a great deal more than they can be said to have been paid for and are adept at thinking creatively and spotting potential health and well being problems at an early stage. Many people who are regarded as challenging in other settings are experienced as less so when they move into a settled, homely environment, where they feel valued and happy. People who use Shared Lives can access Housing Benefit and other benefits, which means that some of the cost of their support is met by the DWP rather than the council. These savings are in addition to the genuine savings quoted above.

Alan is a 22-year-old young man in South Tyneside with a diagnosis of Aspergers Syndrome. Following a breakdown within his family home and then in a residential placement, his behaviour deteriorated and he began to drink to excess despite the best efforts of a number of expensive out of area placements. The Care Management team approached South Tyneside Shared Lives scheme. Alan told them, I hate it here and want to get out. Some health professionals felt that Alans support needs could not be met in a family home, but potential Shared Lives carers were identified and the matching process commenced. This involved a number of social get-togethers leading to an overnight try out stay, weekend stays, then a week-long stay, until both Alan and the Shared Lives carers felt the match could be positive. Alan has now been supported within the scheme for three months without any incidents. He has stated that he is very happy and wants to stay with his carers for the rest of his life. He has begun accessing community education classes and leisure centres and is also contemplating a work experience placement. The cost saving to the Local Authority by providing support within the Shared Lives Scheme rather than the Residential Care Home is a staggering 49,000 per annum (965 per week). Anecdotal evidence suggests Shared Lives services can achieve higher rates of employment success and better health outcomes for the people using them. Much more research is needed into the outcomes of Shared Lives and there are a number of small research and evaluation projects underway (2011). Mary is a 63-year-old lady who has lived in many care settings throughout her life including a residential care home for 17 years Where she had spent most of her time travelling on public transport and looking in shops. Mary was matched with a Shared Lives family and feels that her life has really changed for the better. Her health and personal appearance have improved as she has become much more active and is accessing services such as the dentist for the first time in many years, overcoming a childhood fear. She has two work-related placements at a lunch club and a local caf and has completed an NVQ level 2 qualification in care. At college she studies cookery class and independent living, often visiting the college hairdressers to have her hair NAAPS UK Ltd 2010. www.naaps.org.uk www.communitycatalysts.co.uk | 10
Registered charity: 1095562. Registered company: 4511426

styled or a manicure. Mary no longer feels she needs regular appointments with Community Nursing to address personal health and her emotional well being. Mary sees herself as very much part of the family. The move to Shared Lives has also supported Mary financially, as she has been eligible to access additional benefits, which have provided her with the means to buy new clothing and to go on holidays or breaks accompanied by her carer. Her most recent trip included going to a show to see a Take That tribute band. This huge improvement in quality of life has been accompanied by savings to the council of 6500 per annum, plus Marys reduced use of community health services.

Its not Shared Lives if...


Shared Lives should be a choice available to everyone, but it wont be everyones choice. For instance, a more independent individual may decide they dont need the high level of safeguarding in Shared Lives, or that they would prefer to have an employer/ employee relationship with the person who supports them. NAAPS believes that people should be free to make such choices and a number of our member organisations have diversified, providing both regulated Shared Lives alongside other kinds of support which draw on Shared Lives values or practices, but which are registered as domiciliary care or which fall outside of regulation altogether, because they dont involve personal care, or are a type of support currently outside of the scope of regulation e.g. (in England) day care services outside of the home. We support such diversification because it widens peoples choices, but it is essential that everyone involved remains clear as to what kind of service is being offered and the regulations, tax regime and employment law which apply. A few providers and commissioners have, however, attempted to stretch the definition of regulated Shared Lives in order to fit a different kind of service under the Shared Lives banner. This is not acceptable and can lead to people who use or provide support taking risks which they do not clearly understand or becoming involved in support and employment arrangements which are not lawful or insured. Sometimes this has happened because commissioners have not fully understood the rationale behind the safeguarding and matching processes in Shared Lives and have sought to cut costs. Others have wished to create a more direct relationship between a Direct Payment user and their Shared Lives carer, which is not mediated by a Shared Lives scheme. Shared Lives scheme managers are the registered managers responsible for the standard of care in every Shared Lives household they arrange and should always resist pressures to apply standards incompatible with Shared Lives. So, for clarity, its not Shared Lives if: 1. The Shared Lives scheme has been cut out of the arrangement.

If either the commissioner or the service user contracts directly with the carer, that carer is no longer providing Shared Lives care and schemes and the carer themselves should be careful to make that clear. An arrangement in which there is no Shared Lives scheme involves some risks, such as: Without the Shared Lives matching process, there is a greater likelihood that that the match may turn out to be incompatible.

NAAPS UK Ltd 2010.

www.naaps.org.uk www.communitycatalysts.co.uk | 11
Registered charity: 1095562. Registered company: 4511426

2.

Without safeguarding processes provided by Shared Lives schemes, such as vetting, approval and ongoing support and monitoring, a care worker involved in an arrangement of this kind will have no protection. If the Shared Lives carer is unable to continue caring, there may be no Plan B.

There is no intention to share family life or make the Shared Lives carers home available as a resource.

A Shared Lives household feels like a family home. The participants are entitled to privacy and personal space but the home should not be divided into different sections. This would be characteristic of a supported lodgings arrangement rather than a Shared Lives arrangement. Where Shared Lives is used as day support, the person using the service may not necessarily wish to go to the Shared Lives carers home all the time, but the Shared Lives carer should be happy to use their home as a resource (using it may be something which is being built up to as the supportive relationship progresses). Similarly, the Shared Lives carer should be willing to involve the person they support in their family and community life, although how much family contact is involved will depend partly on the wishes of the person using Shared Lives. Where someone is contracted to provide support and is clear that either they do not wish to use their family home as a resource, or do not wish to build links between their family and the person they support, this kind of support is not regulated Shared Lives. It may need registering as domiciliary care, or it may fall outside of regulation if there is no personal care involved. The care worker will not be able to claim the Shared Lives carer tax break for income from this work and may not be self-employed. 3. There is no matching process.

The matching process can take time, particularly where the match is intended to result in a long term support and accommodation arrangement. A Shared Lives carers home is not a facility with a certain number of vacant beds. It is a family home and the Shared Lives carer should not feel under pressure to accept incompatible matches. In one area there were plans to make it compulsory for Shared Lives carers to accept referrals. This would have been unenforceable, incompatible with the Shared Lives ethos and may have undermined the Shared Lives carers self-employed status. Some Shared Lives carers who wish to provide long term arrangements provide short term or day care for many months before agreeing to a long term match. Rushing the matching process increases the risks of the match breaking down, with the commensurate distress and increased costs that entails. In contrast, there are no direct costs to the scheme of a Shared Lives carer having fewer support arrangements than their theoretical maximum. One scheme manager says, We feel we are match.com, whereas some commissioners think we are hotel.com. In one area, senior managers wanted the matching process to be reduced to a tick list; in another NHS colleagues could not understand why the service was carrying vacant beds. In contrast, in Leeds, a Head of Service sits on the Shared Lives approval panel and this increases their understanding of the range of skills and backgrounds brought by Shared Lives carers, as well as the crucial role of Shared Lives processes such as matching.

NAAPS UK Ltd 2010.

www.naaps.org.uk www.communitycatalysts.co.uk | 12
Registered charity: 1095562. Registered company: 4511426

Comparing the risks of Shared Lives and other arrangements


1. Some support and accommodation arrangements, in which the care provider is paid directly, could fall within the scope of residential care home regulation. It is unlawful to run a small residential care home without being registered with the regulator. A person paid by another individual to provide regular support is very likely to be that individuals employee (not self-employed, as is the case with Shared Lives carers) regardless of any verbal or written agreement to the contrary. Service users have been pursued through the courts for redundancy pay and sick pay when things have gone wrong with a private arrangement and they have found themselves liable for backdated National Insurance contributions, so service users should be advised of these risks if they are directly contracting with a Personal Assistant. You cannot lawfully claim the Shared Lives tax break for work which is not carried out as part of regulated Shared Lives activity. To do so could lead to prosecution. A Shared Lives carer who also provides non-Shared Lives support, should ensure that their Shared Lives scheme manager is aware of the additional work. All concerned should agree that it does not interfere with the Shared Lives care the carer has agreed to provide. Shared Lives households can include up to three adults who use Shared Lives (up to two in Scotland), without being classed as Houses of Multiple Occupation (HMO). This exemption does not apply to other shared households, who should check the legality of their HMO status. Tenancy arrangements for Shared Lives are different to the rules which apply to landlords and supported lodgings. An arrangement in which a persons landlord is also their employee could easily become unhealthy for either party. NAAPS provides public liability insurance specially tailored to Shared Lives, because less specific insurance can often turn out to be invalid when a Shared Lives carer makes a claim. Insurance tailored to Shared Lives is not valid in non-Shared Lives arrangements.

2.

3. 4.

5.

6.

7.

Many Shared Lives carers have part time jobs in addition to being Shared Lives carers so, notwithstanding the risks outlined above, it is possible for someone to provide other forms of care and support alongside their role as a Shared Lives carer. One Shared Lives carer in the South East has set up her own micro-enterprise, providing daytime support to local people. She does not work on this full time and is able to balance this job with her responsibilities as a Shared Lives carer, keeping the boundaries between the two roles very clear. NAAPS now offers dual membership to people who have set up a micro-enterprise in addition to being a Shared Lives carer. See www.naaps.org.uk. Taking on additional work in the care and support field alongside being a Shared Lives carer can work, providing that: They ensure that the demands of any work they do in addition to Shared Lives does not impinge upon their ability to support the people for whom they provide Shared Lives care. They are clear about the roles and activities which fall within Shared Lives and those which do not. They inform HMRC, the care regulator, their insurer, their scheme manager and most importantly the people they support and their families. They understand and stay within regulations such as housing and tenancy regulations.

NAAPS UK Ltd 2010.

www.naaps.org.uk www.communitycatalysts.co.uk | 13
Registered charity: 1095562. Registered company: 4511426

Actions for providers and commissioners


This report has set out the ways in which Shared Lives arrangements can be a route to the ultimate goals of a personalised care and support system: individuals living the lives they wish, feeling settled and a sense of belonging and able to contribute to their family and community. It has also illustrated some of the challenges and limitations of Shared Lives and the local conditions for it to be successful.

Our recommendations for those providing and commissioning Shared Lives are: 1. 2. Raise awareness of Shared Lives as an option with older and disabled people, their families and carers. Consult with older and disabled people, their families and carers to establish the potential demand for Shared Lives in your area for different service user groups. Consult with people who currently use, provide and organise Shared Lives in your area to review the extent to which Shared Lives is delivering choice, control, independence, meaningful activities, opportunities for employment, and a sense of belonging. Educate professionals who have a role in care management, information provision or advocacy about the availability and essential processes of Shared Lives. Examine the business case for developing Shared Lives locally as an affordable route to decrease your reliance on residential care and to transform care and support. Ensure that your local assessment and Resource Allocation Systems (RAS) have taken the costs and benefits of Shared Lives into account in their development and implementation. Talk to potential partners in the NHS, older peoples and mental health services, support for care leavers, and other agencies who may not be currently be involved in Shared Lives or aware of its relevance to their sector.

3.

4.

5.

6.

7.

NAAPS UK Ltd 2010.

www.naaps.org.uk www.communitycatalysts.co.uk | 14
Registered charity: 1095562. Registered company: 4511426