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Bettertogether: working with adults who have any disability

This case study forms part of the What Good Looks Like report on people with a learning disability and autistic people. This co-produced report was commissioned from the Building the Right Support (BTRS) Advisory Group, as part of the wider action plan developed by the Building the Right Support Delivery Board. It has been supported by Partners in Care and Health.

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Bettertogether offers a service in East London/Essex covering the London boroughs of Newham and Havering, and Thurrock, and has spot contracts with other local authorities and some self-funders to support people. It supports adults (from the age of 16) and works with people who have any disability.

Bettertogether is registered with the Care Quality Commission (CQC) to provide personal care. It is also a member of Shared Lives Plus, an umbrella organisation that sets best practice guidance and offers support for all Shared Lives schemes nationally.

About the programme

The initial Shared Lives scheme started in 2000 and the motivations were to:

  • move away from institutional models of care to having a proper home.
  • ensure that individuals with mental health needs could recover in the community.
  • move professional focus to individual strengths rather than deficits.

It was initially established as mental health provision and an additional learning disabilities scheme was established in 2008. It became an independent not-for-profit company in 2016 – and has expanded from the initial Newham focus to now include the London Borough of Havering and Thurrock.

The challenge

One of the challenges is some social worker attitudes. Some people find it hard to ‘get’ the model and prefer a more traditional model of care. There is ongoing work to engage social work teams and help them to understand the benefits of the model.

It isn’t a 'quick fix' as this approach requires time to match-up individuals – each opportunity is unique – but the pressures on brokerage/social work teams means that they are not always able to give it the time required.

Securing the right clinical input, when needed, to maintain placements when individual’s behaviour changes is sometimes challenging. There is a mixed response from some community learning disability/ mental health providers.

Families can sometimes resist using Shared Lives because they feel safer with a more institutional model of care such as a care home.

Currently, COVID has meant that most of the shared lives carers that provided respite/short breaks have moved into long-term care arrangements and recruiting individuals to replace these is challenging.

Recruiting and retaining Shared Lives carers is the biggest risk, but there is an incredible amount of work done to recruit and retain them to overcome this.

A future challenge is accommodation. As the types of housing available, and who lives in them, is changing in East London it is harder to find individuals with space in a family home to do shared lives. But this is not such an issue in Havering or Thurrock where housing and population profiles are different.

What makes it good?

The support is highly personalised, and people are matched with a Shared Lives carer who provides the care and support needed by sharing their home, family, and community life. Taking the time to understand each person and match them to a shared lives carer is crucial.

The underpinning values are that they are strength-based and value each person who uses the service but also valuing their shared lives carers. Everyone has unique skills and something to offer.

They work proactively with specific communities when a specific match was needed, for example working with the local Sikh community through the local temple. It is true place-based working and Shared Lives carers are a wonderfully diverse group of people bringing a range of life experiences to their work.

Partnership working is critical to making this work, always working with NHS services and other social care/ community services to make sure that individuals get the best/right services."

The focus is always on the individual and securing a good match with the right carer and home for them – the chemistry must be right. Ultimately Bettertogether aims to be practical and does feel that there are people it could not support. If a good match can be found, then people can access the service.

Shared Lives carers can undertake specific training to help them support individuals with a range of needs and this includes behaviour support training, provided by Newham Specialist Learning Disabilities Team, for individuals whose behaviour communicates distress.

The service provides a home-based care model inside a consistent home environment – which can be complemented by other services. It can provide respite, shorter-term support following a discharge and a long-term home. Sometimes a Shared Lives setting works with individuals that other providers say that they cannot work with because of their behaviour. Being in a family home environment can mean people don’t need to use behaviour to be noticed

Bettertogether ensures that people can choose to live in the community in a family home. People with learning disabilities and autistic people can use the service: alongside individuals with complex mental health conditions.

The service always has the individual at the centre of its work, and this means that when things become a little more difficult or challenging the focus is on finding a solution that works for the individual and their Shared Lives carer.

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