The Kinder Community Approach

Isolation and loneliness on the one hand, and widening inequalities and social polarisation on the other, are major challenges in the modern world. They are not just problems for those who are experiencing them; they are eroding solidarity in society as a whole, and eroding trust in institutions. This is driving people to protect their narrow personal interests, instead of investing in a community. And that is contributing to the rise in populist movements in several Western democracies. People, in general, miss the sense of community spirit. However their increasing fear and lack of trust reinforces the populist narrative, which in turn reinforces the loss of trust in a vicious circle, worsening the situation.

Kinder Communities approach has emerged from longstanding interests in evidence-based approaches to enabling and empowering people and their communities in order to promote thriving places and wellbeing. In 2016 and 2017, Carnegie Trust UK and JRF funded research which shed light on the complex infrastructure of relationships and acts of kindness, and what could be done to encourage kinder communities. The research work continued and has later examined the role of kindness in public policy. In 2018, Carnegie Trust UK published findings from the first ever quantitative survey on experiences of kindness in communities and public services. Most recently, the Trust has been coordinating a Kindness Innovation Network and working in partnership with North Ayrshire Council to develop and test ideas to embed kindness in communities, organisations and services.

The concept of kindness is an underpinning value for both public services and community empowerment. It can improve the communities’ wellbeing and the quality of public services. There is a growing body of evidence that shows that positive relationships and kindness are at the heart of wellbeing. It is a necessary ingredient of successful communities, though certainly not a sufficient one. Wellbeing itself is getting more recognition as a relevant measure of progress in society, and there are well-documented associations between e.g. higher social capital, lower mortality, better relationships, and better mental health. The UK Office for National Statistics finds that personal well-being is higher among individuals who know and regularly talk to neighbours, and that people’s satisfaction with where they live is more affected by getting
on with neighbours than by the quality of housing.

Creating kinder communities requires a paradigm shift in perceiving kindness not as something additional but as a key value and factor. Yet kindness is difficult to pin down and measure. It needs restraining public services from creating prescriptive communities that are formalised and lacking the human touch. Quite often systems and structures get in a way of generous relations. Risk and regulations, management and targets, although created to protect the vulnerable and enhance effectiveness, they may actually prevent targeted groups from receiving care in a humane way, prevent warm interactions and relationships to grow.

Therefore, the kinder communities approach is a radical approach in the sense that it requires a major paradigm shift into a new way of providing care and measuring its’ quality. Radical kindness
requires connection across differences and a recognition that some people’s needs are greater because of structural disadvantage. As such it sees a role for kindness as a collective and state enabled response to inequality. In other words, it ‘demands institutional change. It requires a difference in the ways in which things are run and managed.

It challenges long established norms and has the potential to be highly disruptive.

The key to this approach is to enable kindness while removing the barriers. The roots of barriers to kindness fall into three broad areas: structural inequality, history and culture, and individual experience.
Structural inequality is how poverty and disadvantage impact the ability to form and maintain relationships.
History and culture mean that places have their own distinctive stories that impact their culture of kindness. Individual experiences relate to individual biographies, mental health, and resilience, all impact on our community relationships.

3.1. What contributes to kinder communities?

1. Welcoming places “agenda free spaces”

• Places free to use
•  Warm hospitality
• Places free from agenda
• People make place

2. Informal opportunities

• Make kindness visible
• Give permission to act in kindness
•  Create opportunities for connections
• Make an effort to connect and act in kindness

3. Values of kindness

• Be kind to yourself
•  Take responsibility
• Trust people
• Recognize and celebrate kindness
• Notice and question values

3.2. What gets in the way of kindness (barriers)?

•  PERSONAL RISK. Concerns about opening ourselves up to risk when we interact with each other appear to dominate our thinking when engaging with those outside our direct family and friendship groups.
• REGULATION. Organizations have become adept at managing risks of human interaction through regulation and policies. While essential and important, these policies can have the unintended consequence of impacting our ability to act in kindness.
• PROFESSIONALISM. The dominant model of a dispassionate professional can impact upon the ability of those in positions of authority to act in kindness.
• PERFORMANCE MANAGEMENT. In measuring what we can, we often fall short of measuring what matters. Narrow performance indicators reduce flexibility, in turn reducing the ability to act in kindness.

3.3. What does it mean in terms of action?

• We need to think and talk about kindness, questioning our values. The very act of thinking and talking about kindness encourages us to be kinder.
•  Leaders need to empower people to act in kindness. This is particularly important for those who provide services, be they public, private or charitable.
• Governments need to remove the barriers to kindness. We need to explore this carefully and consider what steps can be taken to support people to act in kindness.

4.1 Vision: Our lives get better when they are shared.

Staying connected and being kind to one another are fundamental to our social well-being. Kindness, respect and care for one another are essential to the success of shared living matches. It supports creating relations and provide care and companionship.

It reinforces kindness, inclusion and participation in the community, transforming lives of all people, not only the carers and people in need.

4.2. Description

Shared Lives is a regulated model of social care schemes, where a young person or an adult who needs support goes to live with, or is visited regularly by, an approved Shared Lives carer. It is highly flexible, and is built upon the relationship between the people involved. Shared Lives carers are paid an allowance, and the relationship is supervised by a local Shared Lives scheme.

Shared Lives Plus are a charity that supports the network of Shared Lives carers and schemes across the UK. They support members and develop a Shared Living approach based upon the belief that lives are better when they are shared.

There are many variations of Shared Living. At one end of the spectrum there is Homeshare. This is scheme where an older person opens his/her home for companionship and some practical help, and gives a younger person a place to have a good start in life, in return for 10 hours of practical help and companionship from the young person. At the other end of the spectrum, there are Shared Lives carers who provide care and support to people with profound and multiple disabilities. Somewhere in between there is a KeyShare scheme that focus on accommodation for women who don’t have care and support needs, but who would benefit from living in an ordinary household with people who understand and have empathy for their needs.

Carers do not need any prerequisite qualifications and are recruited through a thorough assessment process that can take 3-6 months. They are supported by a local scheme and paid a fee of be-tween £350 and £450 per week, or else paid for a block of time for each person they support — usu-ally four hours in a day. Shared Lives carers are self-employed, and benefit from a tax-free allowance. Once carers are recruited, a personalised, two-way matching process is carried out by one of over 150 local Shared Lives schemes and, once both parties are completely happy, the person moves into the carer’s home. Shared Lives arrangements can last from a few weeks to many years. Many Shared Lives relationships last for decades.

Shared Lives carers are supported by their local regulated Shared Lives scheme, who review the arrangements and provide scheme workers who can help to set things up. And if they choose to join Shared Lives as a member, carers are supported with advice, guidance, support, and training.

Rather than a one-size-fits-all approach to supporting people, Shared Lives, Key Share and Homeshare are built on the foundation of careful, conscious matching processes, where people come to live together because they’ve chosen one an-other and share interests.

4.3. Target population

The Shared Lives model offers support to different vulnerable groups in risk of exclusion from society, such as people experiencing mental health issues, older people, people with intermediate or long-term health needs, young people in transition, care leavers, people with learning disabilities, and victims of modern slavery and domestic abuse. Shared Lives is a unique caring arrangement enabling more than 14,000 people with a learning or physical disability, mental ill-health, dementia, or other ongoing needs, to share their carer’s home and family life. It helps them to rebuild and make new relationships, pursue personal interests in the community, and reduce social isolation.

Shared Lives excels in complex or challenging situ-ations, where there are a mixture of medical and non-medical needs. It can also support people with an ambition to leave Assessment and Treat-ment Units, and can facilitate ‘reablement’. It can delay or even prevent people from needing to go to the hospital at all.

People can live with a Shared Lives carer long-term, visit for a short break, or receive day support. They benefit from a flexible and personalised approach, and receive their healthcare and support with a family and community they know and have chosen.

In specific cases, such a supporting survivors of domestic abuse and modern slavery, Shared Lives has teamed up with national charity SafeLives and specialist support charity Stay Safe East to ensure that survivors staying in Shared Lives access the best support, at the right time, in a way which works for them. It is part of a wider partnership project with charities working with survivors, including Crisis, Hestia, Bawso, and Belfast Women’s Aid.

Shared Lives is officially and consistently rated as having the highest quality of social care in the UK.

Shared Lives schemes ask people about their well-being over months and years, with questions that were developed by people in Shared Lives to best reflect the quality of life. The answers are then inputted into the My Shared Life online tool which presents how people feel about their wellbeing, and how it has changed over time, in clear graphics.

The data up until April 2019 showed:

• 97% of people in Shared Lives felt they were part of the family most or all of the time.
• 89% of people felt that their Shared Lives carer’s support improved their social life.
• 85% of people felt that their Shared Lives carer’s support made it easier for them to have friends.
•  89% of people in Shared Lives felt involved with their community.
•  86% felt their Shared Lives carer’s support helped them have more choices in their daily life.
• 83% felt their physical health had improved
•  88% felt their emotional health had improved.

Over 10,000 Shared Lives carers across the UK al-ready offer nearly 15,000 people an ordinary life, by sharing their home and community. Half the people who live with, or visit a Shared Lives carer, have a learning disability and 8% have mental ill health.

The biggest challenge when discussing the impact of shared living is to use hard measures to grasp soft qualities of kindness, respect and relations. In the old paradigm, where professionalism is associated with hard measures reflecting only a fraction of a person’s life, Shared Lives Plus focus on soft qualities and the overall impact they are making in people’s lives. That holistic impact is influencing also the fragmented and quantitative outcomes, but it lacks a more appropriate representation in the traditional measures. As it is difficult to grasp, yet life changing, here are few quotes from people engaged in the Shared Lives Plus to capture the impact:

“Loneliness is a terrible thing. Shared Lives ex-tends the natural way to connect and provides a mechanism for that.” — MR ORR, a family carer

“Nobody else I know has actually been through this, it’s very difficult for anyone to understand. It’s so good that I’ve got someone else to confide in, I’ve never been able to do that.” — JONATHAN SKINNER, who lives with Alison and Gary Cooper, Shared Lives carers in Somerset.

“When Doug is out with Brandon it gives me peace of mind, a chance to catch up with household jobs and to stop and think. I have seen an improvement in Doug and I’m able to leave him for short periods of time in the day, without him becoming too anxious. I really wouldn’t want to be without Shared Lives.” — IRIS, Doug’s wife

“Being able to see the change in David visually, how much he has improved, how much more energy he has now, is so rewarding. David’s brother said we’d saved his life, and hearing something like that from a family member is obviously amazing.” — CARERS STEPHEN AND RICHARD, about living with David Ward, 52, as part of the Durham Shared Lives scheme

The Shared Lives model, supported by Shared Lives Plus, focuses from the outset upon under-standing and addressing people’s needs and abilities. The process is designed to be beneficial for all actors, fostering inclusion and equity. Shared Lives is also addressing inequalities and discriminatory practices by empowering vulnerable groups, and joining forces to provide equal access to health care and social care for all. It provides flexible schemes for carers and participants, striving for tailor-made approaches, while maintaining a standardized lev-el of high-quality service and safety. The impact of this initiative goes beyond responding to individual needs. It influences the community’s access to services, and fosters broader participation and inclusion in society.

–> CO-DEVELOP HEALTH AND WELLBEING, ENABLE PARTICIPATION
Shared Lives is relying on mutual trust and evolves around it, while involving the local community in the production of wellbeing. In the case of chronic or complex conditions, Shared Lives is focusing on what people are able to do, not solely focusing on their needs. This is looked at in the context of their desired environment and schedules, to foster belonging, trust, and wellbeing. Carers monitor the physical conditions, and facilitate faster and more carefully targeted connections with the health system. By improving the wellbeing of the participants, they also have a positive influence on health outcomes, such as mortality.

Shared Lives builds partnerships with authorities and organizations to understand and address the needs of vulnerable groups in the most efficient and democratic way.

–> BUILD RESILIENT COMMUNITIES
Shared Lives is helping to reduce health disparities by connecting people, creating additional earning opportunities, and by fostering monitoring mechanisms towards wellbeing and overall health. Carers can spot early signs of worsening conditions among people who are not able to observe and/or report it themselves. This helps to tackle discrimination and unequal access to medical services. It also enables a deep connection between different groups of people, creating a mutual benefit for the participants. It makes the service more resilient in times of restriction or crisis, and this has also been proven during the COVID-19 pandemic. It addresses the needs, health, and overall wellbeing of the participants.

–> MONITOR, EVALUATE, AND ADAPT
Shared Lives is monitoring the execution and effectiveness of their approach, based upon the needs of the participants, and focused upon pro-viding tailor-made support for each person. The safety measures are monitored and adapted when necessary, while maintaining flexibility and individualized support. Through Shared Lives schemes membership, feedback is being provided, and the best practices are shared among carers, fostering a learning atmosphere, and improving the level of service.

In shared living there are 3 parties engaged: a scheme provider (usually a local authority, a charity or in a few cases a private company); a carer, that is a self-employed person, paid by the scheme provider; and a person requiring support. Carers are being recruited and matched with the right person by the scheme provider. This is based on a number of factors, and the final decision is in the hands of the person requiring support. The length and the nature of the relationship can change over time, reflecting the needs of the person requiring support. In Shared Living the carers are paid by the scheme providers, the rent is covered by the housing benefit, and the food, bills etc are being covered by the person requiring support. Different schemes are present around UK, in line with different regulations in Scotland, Wales and England.

Shared Lives Plus is a registered charity and is be-ing funded 60% by the membership fees (currently 6500 members), including institutional members. The rest of the funds come from trusts, grants that enable further development, and paid consultancy services.

Shared Lives Plus is a network charity, supporting but not regulating its members. It provides policies, procedures, guidance, and tools which focus upon quality, including a quality framework tool, methods of evaluating schemes, and an online outcomes measurement tool. It has a formal management structure (CEO and teams to support the network and further development of the shared liv-ing framework). It does not, however, manage the members in a hierarchical way.

The main insight is that relationships determine the quality of our lives, and having support from a trustworthy relationship can transform lives. A lot of socially-isolated people survive on very limited informal contacts, such as meeting people on the street, or in a local shop. Supporting them in creating more sustainable long-term relationships, also in times where the possibility to meet people outside is restricted, has become more critical than ever for their wellbeing.

The specific recommendations for Shared Lives schemes focus on individuals’ rights to independence, and the ability to take control of their own lives, meaning:

•  People can manage their own needs and affairs as much as possible
• People can engage with, and have meaningful relationships in, the wider community
• They can exercise their democratic rights as citizens, in accordance with the principles and values of the guidance.

Also featured is a case study from a Shared Lives scheme, which cares for 297 people receiving either short breaks, respite, or long-term care in the carer’s own home. Among other positives, the report noted that:

• The care and support were positive and consistent, and improved people’s quality of life.
• People were encouraged to learn new skills to enhance their independence, and were treated with the utmost dignity and respect.
• People unanimously evaluated carers and staff as exceptionally compassionate and kind.

Shared living requires trust, from funding bodies, and among carers and people using the support. Shared Lives insisted on defining objectives such as establishing and empowering relationships, inclusion in the community, and fighting loneliness, rather than defining objectives in terms of hours or days spent. Trust enables Shared Lives to focus on the goal, to focus on the benefits of relationships, without removing the kindness factor by formalizing or overregulating it.

In the same time it creates a paradox where the soft approach makes it difficult to be widely integrated and implemented by authorities, that are in their nature representing regulatory bodies and avoiding “soft approach” as non-reliable enough.

During the COVID-19 lockdown, Shared Lives carers have gone above and beyond to ensure people using Shared Lives continue to receive the care they need, even if it has meant working far longer hours. Shared Lives schemes have also worked during this time to ensure that carers have received significant practical and emotional support. The nature of the Covid-19 restrictions has meant that schemes have had to redesign the support they provide, from being ‘hands-on’, to being ‘arm’s-length’, using Zoom, Microsoft Teams, phone calls, and socially-distanced visits.

Following the national government response to the pandemic, Shared Lives carers have received new guidance and safety measures. This has included measures concerning Personal Protective Equipment and testing.

During the lockdown, people supported by Shared Lives carers have not been able to do their usual voluntary or support activities during the day, and so carers have been taking on additional responsibilities, with none of their usual breaks to help them keep going.

Due to these unique circumstances, carers in the UK have been getting to know each other and their local communities better, baking, helping neighbors out, and creating positivity with a whole range of ideas — from painting stones with positive messages, to making gyms in their gardens, or new flooring to continue tap dancing.

It has also been a personally challenging time for many carers, who have lost their income in this difficult time due to temporary suspension of Respite Care schemes in the UK.

The Care Quality Commission is a body monitor-ing and evaluating social care in the UK. The CQC’s recent State of Care report (covering both period before and during pandemic) highlighted that 95% of all Shared Lives schemes were rated ‘good’ or ‘outstanding’ (7), making it the highest performing form of social care for the fourth year running.

As a result, the pandemic challenge has created an increased interest among authorities in finding alternative care for the most vulnerable citizens. So far, local authorities in the UK have been impressed with how their local Shared Lives schemes responded to the pandemic. It was perceived as quality, cost-effective support. From these conversations, it is apparent that local authorities are interested in developing more community-based forms of care and support, and having less reliance on provisions such as care homes.

LIZ KENDALL MP, Shadow Minister for Health and Social Care said:
“One of the positive things that this virus has made us realise is our friends and families and the people we love, and hug. When we talk about social care, we forget that most care is done by families, which is what Shared Lives to all intents and purposes, is. Hundreds of people in other care settings could lead to brilliant, exciting, warm, lov-ing lives, in people’s homes. We need to shift the focus of people living well at home, with the right mix of informal and formal support from people we know and love.”

Shared Lives Plus CEO ALEX FOX, said:
“Shared Lives and Homeshare are two models of shared living that are fighting the twin dangers of infection and loneliness. The instances of infection and death from Covid-19 in shared living are much lower than in other social care settings because both models allow people to support each other within small households without relying on staff teams. Home is the safest place to be.”

Kinder Communities — Ben Thurman, Policy and Development Officer at Carnegie UK, ben.thurman@carnegieuk.org

https://www.carnegieuktrust.org.uk/project/kinder-communities/

https://www.carnegieuktrust.org.uk/publications/place-kindness-combating-loneliness-building-stronger-communities/

Shared Lives Plus — Ben Hall, Development Manager — Scotland, Shared Lives Plus, ben@sharedlivesplus.org.uk

Home

— Personal stories and experience
Meg’s story — https://www.youtube.com/watch?v=kK0_Bz4FdTQ&t=10s
Homeshare — Florence and Alexandra’s story – https://www.youtube.com/watch?v=CXdXm1lA9J8&feature=emb_logo
James and Andy’s story — https://www.youtube.com/watch?v=2K7zXMFv0oU
— Rural Life — https://www.youtube.com/watch?v=YF6IXvnan8k