Living Well with a Learning Disability Strategy in Devon 2018 – 2022

Introduction

A joint strategy covering the Devon County Council, Plymouth City Council and Torbay Council areas for people with a learning disability in Devon, including young people approaching adulthood.

This strategy builds on the progress made since the publication of our 2014-2017 strategy and sets out our refreshed approach to improving the lives of adults who have a learning disability in Devon.

A learning disability is a reduced intellectual ability and difficulty with everyday activities, for example household tasks, socialising or managing money, which affects someone for their whole life.

Across our health and care services in Devon, we want to promote the independence of people with learning disabilities and help people to achieve what matters to them. We want Devon to be a place where people with learning disabilities are confident, resilient and connected.

This refreshed strategy is informed by what people tell us is important to them. It sets out our vision for adults with learning disabilities across Devon, where we are now, our key areas of focus and how we will measure the impact of what we do.

The strategy encompasses the geographical area of Devon, which includes Plymouth and Torbay, and spans the work of two Clinical Commissioning Groups and three Local Authority areas. It will support Local Authorities and the NHS to commission quality support that promotes the independence of people with learning disabilities, within the context of significant financial and capacity challenges.

Our refreshed strategy sets out what we will do together across Devon, Plymouth and Torbay that is best enabled by working at scale.

We will work together to have more appropriate housing that meets the range of needs of people with learning disabilities. We will work together with Housing Authorities, District Councils and local communities to understand how people are currently supported. This will enable us to have a joint understanding of what is needed in the future to help people achieve what matters to them.

We will support more people with a learning disability in Devon to have a job, helping people to develop their skills and also increasing the number of opportunities for employment across Devon, Plymouth and Torbay.

We will work together to improve access to healthcare for people with learning disabilities, so that they have improved physical and mental health outcomes and live longer as a result.

The refreshed strategy also sets out what we will commit to in our local areas to improve how people with learning disabilities live their lives.

We will increase the opportunities in communities for people to live as independently as possible, which means that a wide range of services need to be easy to use for people with a learning disability.

We will support young people to develop independent life skills, so that they can lead fulfilling lives as adults.

We want people with learning disabilities to be safe in their communities and to make sure that we always listen to people and their families/carers about their care and what matters to them.

We will support carers to be able to care throughout the different stages of their lives.
The refreshed strategy will be underpinned by both local and joint action plans across Devon, Plymouth and Torbay.

Context: How this fits within the Sustainability and Transformation Partnership for Devon

This refreshed strategy sits within the overarching context of the Sustainability and Transformation Partnership (STP) for Devon.

The STP is working towards an aligned health and care system across Devon; to continually improve the health and care of people living in Devon, Plymouth and Torbay. It seeks to address the three key aims of the NHS Five Year Forward View to improve people’s health and wellbeing, experience of care and cost effectiveness.

Across Devon, the STP is working to deliver better and more equal outcomes for more people and to do it sustainably, harnessing the value of partners coming together to tackle problems together. This refreshed strategy for adults with learning disabilities is part of the work of the STP to improve the lives and address health inequalities of people with learning disabilities.

Through the overarching STP for Devon we will change the way we work together by delivering a range of activities and initiatives that will be planned around our four strategic priorities. These have informed the refreshed strategy for adults with learning disabilities.

• Priority one – Enabling people to stay and be healthy
• Priority two – Enhancing self-care and community resilience
• Priority three – Integrating and improving community care and care in people’s homes
• Priority four – Delivering modern, safe and sustainable services.

Our vision for people

• We are ambitious for people with learning disabilities in Devon.
• We want people with learning disabilities to have the same opportunities as everyone else and to lead meaningful lives within their communities[1].
• What matters to people and how they achieve their potential will drive all we do.
• People with learning disabilities have the right to choice and control and to be treated with dignity and respect.
• Carers and families of people with learning disabilities have the right to the same hopes and choices as other families

7 Keys to citizenship:

• Friendship and relationships
• Freedom
• Money
• Home
• Help
• Life

[1] 7 keys to citizenship: Acknowledgement www.centreforwelfarereform.org a free on-line resource from the Centre of Welfare Reform Limits

The outcomes we want for people

There are eleven key outcomes that we want for people, which are expressed below as “I” statements

• I am an active citizen and member of society.
• I have opportunities to meet friends, to join social groups and to benefit from community and leisure facilities.
• I can develop independent life skills to achieve my potential and use Technology Enabled Care and Support where appropriate.
• I have appropriate education and training opportunities to support me to learn the skills needed to have a job.
• I have information and advice that I can understand and access to support when I need it that is close to home and helps me to achieve my goals.
• I live in my own home, where possible, with appropriate accommodation and housing that meets my needs.
• I am supported to live an independent life that is right for me throughout my early life and as an adult.
• Where I have complex needs, specialist and intensive support is in place for when I need it.
• My family and/or carers are able to care for me.
• I can access the healthcare I need and have improved physical and mental health outcomes and live longer as a result.
• I feel safe and can take positive risks because I am supported in the right way.

Why this is important and what people told us

We know that people with disabilities and their families/carers do not generally want to be dependent on public services or be placed in a care setting if this can possibly be avoided. Instead, they tell us that they want to live with and/or be supported by their family and friends at home in the community, and remain connected to their interests.

In Devon we still have significantly more people using statutory services than the England average and the way that people with learning disabilities are supported is not always focused on enabling them to live as independently as possible.

Our understanding of the needs and experiences of people with learning disabilities and their families/carers both now and in the future has informed this strategy. We have highlighted throughout the strategy what people with learning disabilities and their families/carers have told us is important to them.

There were 20,586 adults with a learning disability in Devon in 2017 (over 2% of the Devon population)

7% of adults with a learning disability are employed in Devon

There are 3530 adults living in Devon with a learning disability who receive social care services

£130m spend across Health and Social Care across Devon
is important and what people have told us

What we have achieved so far

Transforming Care Partnership

Across Devon, care and treatment reviews have ensured thorough facilitated discussions between relevant professionals, families and helpful challenge from independent experts. Discharge planning for people is now more robust.

Good practice examples in the development of local, person centred services for people with complex needs, including Beyond Limits and new housing development in Dawlish.

Closer relationships between hospital and community providers.

Devon

Learning Disability Partnership Board and Council leaders committed to improving accessibility and support to promote people’s independence and support integration in communities. This includes making bus routes more accessible, ensuring bus drivers receive learning disability awareness training and providing people with accessible information to help them understand the different types of road crossings.

Increased the number of internship places available in Devon to young people with disabilities. This included running Disability Confident meetings with Skills for Employment.

Ran a targeted information campaign on dysphagia and chocking risks.

Agreed levels of shared support in Devon’s 90 Supported Living buildings, so that people can make more informed choices about where they live.

Torbay

Learning disabled people, commissioners and providers have co-produced a new Supported Living specification and framework for Torbay. Housing is separate from Care and Support. Learning disabled people have equal rights to tenancy agreements with clear outcomes based care and support. Project Aspire, delivered in partnership by South Devon College and Torbay and South Devon NHS supports young people aged 18-24 years to develop skills, gain qualifications and gain meaningful employment. SPACE an independent support planning service are working with learning disabled people in residential care to support them into greater independence. SPACE is also working with Learning Disabled people to support them into bespoke employment opportunities.

Plymouth

• Better housing with increased focus on promoting independence – 12 city centre flats with on-site support
• Co-produced outcomes with people with learning disabilities and developed a quality mark to help people make informed decisions about their care
• Invested in assistive technology to support people to live independently
• Health and wellbeing hubs set up with time banking and volunteering opportunities for people with learning disabilities.
• Peer led project to educate young people with learning disabilities against sexual exploitation
• Derriford Project Search and Funky Llama supported young people with learning disabilities to get paid employment.
• Plymouth Special Olympics supported people with learning disabilities to train as sports coaches and compete

Key area of focus: Opportunities in communities for people to live as independently as possible

It is very important that the outcomes underpinning this strategy are upheld in our local communities and also within the services we all use in our lives, such as support to have a job, accessible transport, leisure facilities and housing. This means that a wide range of services need to be easy to use for people who have a learning disability.

People have told us:

• I want to be accepted for who I am and to be able to get involved in my community.
• I want to have friendships like everyone else.

What we will do:

• We will work alongside local communities, bringing together people with skills, expertise and knowledge in an area to support people with learning disabilities to access the same opportunities as everyone else
• We will create more opportunities for (unpaid) friendships and peer support in communities for people with learning disabilities.
• Friendship groups will include a matching service for people interested in the same type of activities
• Devon County Council will develop an accessible website and online community for people with learning disabilities to better connect people with one another and their communities. Learning from this will be shared across Devon
• Devon’s Learning Disability Partnership Board will continue work to improve accessibility and support in communities to both promote people’s independence and support integration in communities.
• This includes making bus routes more accessible, ensuring bus drivers receive learning disability awareness training and providing people with accessible information to help them understand the different types of road crossings
• We will work with our partners to increase the number of Changing Places (toilets) in market towns across Devon and for information about recycling and refuse collections to be available in easy read format
• We will work with universal services such as GP surgeries, hospitals, schools, businesses and employment support to ensure that they are easy to use for people who have a learning disability
• We will consider how Technology Enabled Care and Support can either replace or complement the care and support that people receive, and to support them to live as independently as possible in their communities

Key area of focus: More appropriate housing that meets needs

Independent living means all people with a learning disability having the same freedom, choice, dignity and control as other citizens at home, work and in the community. We want people to live in their own homes, where possible, and for there to be enough appropriate housing to meet need. We will work together across Devon, Plymouth and Torbay to secure more appropriate housing that meets the range of needs of people with learning disabilities. We will work together with housing authorities, District Councils and local communities to understand how people are currently supported and what is needed in the future to help people to achieve what matters to them.

People have told us:

• I want my own home and I want to live close to my friends and family.

What we will do:

• Many people with learning disabilities live in their own homes either alone or with family members or companions, and we will support them to continue to do so
• Some people with learning disabilities, usually if they have significant support or care needs, require a different living environment to meet their health and care needs. Where this is the case, we want people to be supported in these settings to develop independent living skills
• We do not want people with learning disabilities to be placed into a care home where their needs can be met elsewhere, or to remain in a care home unnecessarily. For those people currently living in care homes who have the potential to live more independently, we will help them to look at alternatives to residential care to better support them to achieve their goals
• We will work with providers to develop supported living and extra care housing. These settings can promote independence in people while still providing up to 24 hours of support to meet their care needs
• Across Devon, Plymouth and Torbay we will develop a housing plan to stimulate the development or sourcing of good quality accommodation for people with learning disabilities who display behaviours that challenge
• We will improve our understanding of how providers support people with learning disabilities in Devon, to inform our work with the market to develop models that support people to develop independent living skills over time
• People’s needs change over time and we will work with providers to develop appropriate accommodation and housing that will support people through these changing circumstances. We will also consider the accommodation requirements of young people who will need health and social care support as adults

Key area of focus: Support people to get a job where appropriate

Employment is one of the best ways to build on people’s strengths and abilities, and to enable them to live independently within their communities. Yet, only 7% of adults with a learning disability in Devon, Plymouth and Torbay have a job. The recent National Development Team for Inclusion study into the effectiveness of different models of employment support for people with disabilities concluded that supported employment is the most effective. This has been supported by a national focus on creating flexible employment opportunities for people with learning disabilities.

We will work together across Devon, Plymouth and Torbay to support more people with a learning disability to have a job. We will support people to develop their skills and also increase the number of opportunities for employment.

People have told us:

•  I want to have a paid job so that I can help support myself and do the things I want.
• I find it difficult to get a job.

What we will do:

• Across wider Devon, we will increase the number of people with learning disabilities in Devon who are employed
• We will create more supported employment opportunities and increase the number of Disability Confident employers across Devon
• With our partners, we will promote the value that people with learning disabilities can bring to businesses and to the local community through a focused campaign across Devon
• We will work with a range of partners, including Jobcentre Plus, Further Education colleges, Learn Devon, businesses and universities, to address the known barriers to employment and increase opportunities for volunteering, apprenticeships, internships and employment for people with learning disabilities. This work requires a multi-agency approach with all organisations taking responsibility for this ambition and taking steps to support people with learning disabilities to have and retain a meaningful job
• The care and support that people receive will be focussed on supporting them to learn the skills they need to have a job, where appropriate
• We will ensure that people have access to appropriate education and training opportunities to learn the skills they need to have a job

Link to National Development Team for Inclusion – Employment support for disabled people – the evidence

Key area of focus: Tackling health inequalities

People with learning disabilities have markedly poorer health than their non-disabled peers and have a high prevalence of diagnosed health problems. They experience poorer physical and mental health, and significantly lower life expectancy. The recent study by the Learning Disabilities Mortality Review (LeDeR) programme into the deaths of people with learning disabilities indicated that this inequality continues.

We will work together across Devon, Plymouth and Torbay to improve access to healthcare for people with learning disabilities, so that they have improved physical and mental health outcomes and live longer as a result.

People have told us:

• I want to be understood
• I don’t know how to access health care when I need it

What we will do:

• Increase the number of people with a learning disability on the GP learning disability register who have Annual Health Checks that lead to a Health Action Plan
• Promote and implement the MENCAP campaigns of “Don’t Miss Out” and “Treat me Right” and give particular focus on the inclusion of 14-17 year olds by working with schools
• Promote and implement the STOMP anti-psychotic prescribing programme (Stop The Over Medication of People with a learning disability)
• Support people who have a learning disability to access those services that are appropriate to their needs as they grow older, including dementia related needs
• Ensure that people with a learning disability and their families/carers have tailored support at the end of their life.
• Support and promote the process for learning from deaths of people with learning disabilities through the Devon Learning Disabilities Mortality
• Review (LeDeR) programme and will train more reviewers
• Strengthen information sharing and effective communication between different care providers or agencies
• Make sure that all people with learning disabilities with two or more long-term conditions (related to either their physical or mental health) have a local, named health care coordinator.
• Provide learning disability awareness training to staff, delivered in conjunction with people with learning disabilities

Key area of focus: Preparing young people for life as an adult

Many children and young people with learning disabilities will require health and care support as adults. However, young people and their families/carers regularly tell us that the transition from children to adult services is a challenging and uncertain time for them.

We want to support young people to develop independent life skills so that they can lead fulfilling lives as adults and achieve their potential.

People have told us:

• I don’t want to have to fight for everything.
• I want to be listened to.
• I want someone to understand my situation.
• I want my young person/adult to be able to do things other young people their age are doing.

What we will do:

• We will work better together to support young people transitioning from children’s services.
• We will make sure that support is focused on enabling young people with learning disabilities to live as independently as possible. This will include support for young people to develop independent living skill such as travel training, learning the skills needed to cook and, where appropriate, to have a job as an adult.
• Young people with learning disabilities and their families/carers will be able to access information and advice to support them to know what is available and to help them to live within their local communities.
• We will increase the number of young people who use Technology Enabled Care and Support to promote their independence.
• We will increase employment and training opportunities for young people, including within our own organisations.
• We will secure and use the information required to regularly plan for those young people with learning disabilities who will need health and care support as adults.
• We will help people to be steady and ready for the next real transition (not artificial or administrative transition) in their lives. This will include learning from testing new ways of working with young people and their families/carers.
• We will build emotional resilience and increased ambitions of young people and their families as they move towards adulthood.

Key area of focus: Support for people with complex needs

The report stemming from the scandal of Winterbourne View[1] highlights that: “nationally there are still too many people placed in hospitals far away from home because their needs have not been met by local services”. There are still people placed in care outside Devon when they have not chosen to be there.

Much progress has recently been made through our Devon- wide Transforming Care Partnership to ensure that more people with complex needs live in their own home, have choice over who supports them and are part of their communities. We want to increase the supply of the right skilled providers to support people with very complex needs.

People have told us:

• I want to be close to family and friends, and to go home
• There is a lack of training, skills and support for families and carers in managing complex needs and behaviours
• There is a lack of confidence in behaviour management and shared risk taking by practitioners, carers and families
• We need to listen to carers and families as expert partners in care

What we will do:

• We will reduce the number of people with learning disabilities placed in inpatient settings across the country
• Our housing plan for people with learning disabilities who display behaviour that challenges will identify those likely to require accommodation on discharge from an out of area in-patient bed.
• We will work with local housing providers and the market to respond with housing and care solutions
• We will develop Positive Behavioural Support services so that people get the right psychological support to help them manage crises without having to go to hospital
• We will unblock the flow of patients in the Additional Support Unit (ASU) beds provided by Devon Partnership Trust (DPT) and Livewell so that the clinical teams can manage short term admissions when required
• We will improve the planning of transition for young people and develop community forensic services
• We will improve workforce development, recruitment and retention by closer working with partners, including Health Education England, Skills for Care, Universities and the National Learning Disability Nurse Consultant Network
• We will work together as a system of services to put in place the right support for people whose needs touch a range of services, so that the support is seamless and focused on what matters to people

[1] The Winterbourne View inquiry occurred at Winterbourne View, a private hospital at Hambrook, South Gloucestershire. A 2011 Panorama investigation exposed the physical and psychological abuse suffered by people with learning disabilities and challenging behaviour at the care home.

Key area of focus: Keeping people Safe

Keeping people with learning disabilities safe and helping them to stay safe is a key priority for us all. We need to ensure that staff are well trained to support prompt responses to any allegation of abuse and that the general public, volunteers and professionals have a good understanding of safeguarding. We will support individuals to speak to speak out with the help of trained advocates if required.

People have told us:

• I do not always feel safe in Devon
• I am worried about the care that my family member is receiving

What we will do:

• Make sure that all services we provide or commission are fully up to date in training their staff, not only in safeguarding processes, but also in respect of the Mental Capacity Act in relation to the Deprivation of Liberty Safeguards
• We will commission services that deliver kind and compassionate care that helps to keep people safe
• We will carry out focus groups across Devon to understand the reasons why people don’t feel safe
• We will review how Local Authorities and safeguarding partners are managing safeguarding concerns to make sure that we are dealing with these quickly and proportionately
• We will carry out a safeguarding publicity campaign to make sure people know what safeguarding is and how to get the help that they need when they need it
• We will make sure that we are always listening to families and carers of people with a learning disability about the care their family member is receiving and what matters to them

Key area of focus: Carers are able to care

People have told us:

• We want to be recognised and involved in planning with our family members
• We want to understand what services are available for our family members and to be respected and involved by them, particularly in preparing for adulthood, living independently and preparing for later life
• We want to be put in touch with support which enables us as families and carers to maintain our health and wellbeing, resilience and to have a life of our own

What we will do:

The role of caring is important within the strategy and we acknowledge that whilst carers’ needs are addressed in separate strategies, the needs of carers of people who have a learning disability are supported in tandem through the commissioning actions taken across Devon, Plymouth and Torbay

• We will involve families and carers in the health and care support for people with learning disabilities
• We will support families and carers to plan for when they have gone and to build that planning into the support for their child
• We will give help and information to families and carers as part of planning for support for people growing older with learning disabilities. For example, informing them of sources of support for people after a family bereavement
• We will support parents with disabilities to fulfil their parenting role for their children

How we will measure our impact

Whilst there is much good work to build on, we recognise that this work is challenging in the context of limited resources across the health and care system in Devon. We need to commission and secure quality support that promotes the independence of people with learning disabilities, within the context of significant financial and capacity challenges.

It is really important that we continually monitor the impact of our work to better support people with learning disabilities across Devon.We will review our progress in respect of the outcomes that we have developed with people with learning disabilities and their families/carers.

Alongside this, we will also consider the following indicators:

• Increased number of people with learning disabilities in employment.
• Increasing numbers of people with learning disabilities who are satisfied that they have a clear plan for progression.
• Fewer people in hospital and residential care/nursing provision, and independent out of county provision.
• Levels of support and associated costs reduce over time and fewer emergency placements/provision.
• Awareness by GPs of a young person’s health needs going in to adulthood and as adults.
• Increased number of people with learning disabilities who have had an Annual Health Check
• People with learning disabilities feel more able to be involved in their communities.
• Health and social care services are more effective and safer for people with learning disabilities, so they live for longer.
• Increased satisfaction of carers.
• The improvements in care and support within this strategy will be monitored locally by each local authority and CCG, with regular reports to the Health and Wellbeing Boards in each Council area.
• The Learning Disability Partnerships Boards will also have an important role in the monitoring of any local action plans, ensuring the full involvement of people who have a learning disability and their families and/or carers.

Getting involved

It is really important that we work closely with people with learning disabilities and their families and carers as we work to achieve our ambitions.

We want to understand what is important to people and to have regular conversations that inform the development and delivery of our work to improve support.

Devon, Plymouth and Torbay operate effective Learning Disability Partnership Boards, which include a range of service providers, carer representatives, commissioners and people who have a learning disability.

There are many ways that we monitor our progress and hear directly from families and carers and people with learning disabilities about what needs to be improved.

If you want to get involved, please get in touch.

Useful links

Devon
http://www.learningdisabilitydevon.co.uk
https://www.onesmallstep.org.uk
https://devoncarers.org.uk
https://www.pinpointdevon.co.uk
Northern, Eastern and Western Devon CCG
Devon Partnership Trust

Plymouth
Plymouth Council
Plymouth Community Healthcare

Torbay
Torbay Council
Torbay and Southern Devon Health and Care Trust
Torbay and Southern Devon Clinical Commissioning Group