3 Introduction and Overview of the Project
3.1 Overview of Project
A priority within The keys to life (Scottish Government, 2013) is that all adults with learning disabilities, including those with complex needs, experience meaningful and fulfilled lives. This includes where individuals live as well as the services they receive. Some people with learning disabilities and complex needs are living far from home or within NHS hospitals. There is an urgent need to address this issue and therefore the Scottish Government commissioned a two-year project to look specifically at the support provided to people with learning disabilities who have complex needs. The focus of the project was to gather national data on individuals with learning disabilities who have additional complex needs, and who are either placed out-of-area, or are currently within hospital-based assessment and treatment units, classed as delayed discharge.
The aim of the project was to provide information about the issues, and to help identify the actions that could improve outcomes for those people with learning disabilities in Scotland, who currently are unable to receive appropriate support in their local communities, and who have either been admitted to assessment and treatment units, or are living in out-of-area placements. The Scottish Government wants to support Health and Social Care Partnerships to find alternatives to out-of-area placements, and to eradicate delayed discharge for people with learning disabilities.
3.2 Definition of Terms
3.2.1 Learning Disability
A learning disability is defined within The keys to life as a "significant lifelong condition which is present prior to the age of eighteen and which has a significant effect on a person's development. People with a learning disability will need more support than their peers to:
- understand information
- learn skills and
- lead independent lives"
Learning disability does not include specific learning difficulties such as dyslexia. An acquired brain injury which occurs at age eighteen or over would also not be considered as a learning disability.
3.2.2 Challenging Behaviour
The term challenging behaviour is sometimes replaced with 'behaviours of concern' or 'stressed and distressed behaviour'. However, within this report, the term challenging behaviour is used as it is still the most common term within the sector, and is also the term that is used within a research context. It refers to behaviour which challenges services and support providers, rather than implying that the person is themselves challenging.
The definition used for challenging behaviour for the purposes of this project was:
"Behaviour can be described as challenging when it is of such an intensity, frequency or duration as to threaten the quality of life and/or the physical safety of the individual or others and is likely to lead to responses that are restrictive, aversive or result in exclusion"
(Challenging Behaviour: A Unified Approach' Royal College of Psychiatrists, British Psychological Society & Royal College of SALT 2007)
3.2.3 Complex Needs
It is acknowledged that it can be difficult to define what is meant by complex needs and that there are a range of current definitions. For the purposes of this project, the term complex needs is used to refer to people with learning disabilities who also have one or more of the following:
- Severe challenging behaviour (it is noted that this may include behaviour which is not severe in itself, but becomes severe due to its high frequency)
- Forensic support needs
- Mental health needs
- Profound and multiple disabilities (it is noted that although this group is generally included in the term complex needs, the data from this report found small numbers of people with these types of needs)
Out-of-area was defined as living within a placement not within the individual's funding authority. This could include living in either an NHS or a private hospital.
3.2.5 Delayed Discharge
Delayed discharge was defined as per the NHS Scotland Delayed Discharge Definitions Manual (NHS National Services, 2016):
"A delayed discharge is a hospital inpatient who is clinically ready for discharge from inpatient hospital care and who continues to occupy a hospital bed beyond the ready for discharge date."
3.3 Policy Context
3.3.1 The keys to life
The keys to life is Scotland's learning disability strategy and was launched in 2013. It includes a specific focus on health inequalities and is underpinned by a commitment to human rights for people with learning disabilities and the principles of choice, control and independence.
In 2015, the Scottish Government published an implementation framework centred on four strategic outcomes: a healthy life; choice and control; independence; and active citizenship. Within this, under strategic outcome three "Independence: people with learning disabilities are able to live independently in the community, with equal access to all aspects of society", a commitment was made to explore alternatives to out-of-area placements for people with complex needs; this project is the result of that commitment.
3.3.2 Revised keys to life Framework
The Scottish Government intends to publish a revised implementation framework for The keys to life. The four key themes for that work are: Living, Learning, Working and Wellbeing.
3.3.3 A Fairer Scotland for Disabled People
Since the publication of The keys to life and the implementation framework, in 2016 the Scottish Government has also published A Fairer Scotland for Disabled People. This plan is part of the programme for A Fairer Scotland, and was shaped by the experiences and insights of disabled people. It is the delivery plan to meet Scottish Government obligations under the United Nations Convention on the Rights of Persons with Disabilities, and has five long-term ambitions aimed at transforming the lives of disabled people, including people with learning disabilities, in Scotland, and ensuring that their human rights are realised.
The five ambitions are:
- Independent living: support services that promote independent living, meet needs and work together to enable a life of choices, opportunities and participation.
- Financial independence: decent incomes and fairer working lives.
- Accessibility: places that are accessible to everyone, including housing, transport and the wider environment.
- Protected rights: the rights of disabled people are fully protected and they receive fair treatment from justice systems at all times.
- Active participation: disabled people can participate as active citizens in all aspects of daily life.
The work of this project and the areas for action identified within this report are set within the context of the Fairer Scotland for Disabled People delivery plan.
3.4 The Challenge
Support to people with learning disabilities and complex needs has historically proved a challenge in Scotland and across the wider UK. From the time of the large learning disability hospital closures in the 1980's, finding appropriate and sustainable community placements for this group of people has proved difficult. It is true that the sector has some examples of very good practice where people with complex needs are well-supported and live full and active lives in their communities; however, there are also many examples of individuals who have undergone multiple placement breakdowns, hospital admissions, and difficult experiences, and who have not received the right support at the right time, in order to meet their outcomes and achieve full and meaningful lives. Solutions to this situation are therefore likely to need more than individual service changes, but must instead be seen within the context of transformational systems change.
3.4.1 Impact on Individuals
The impact of out-of-area placements and delayed discharge for the individuals affected, is often huge and life-changing. Breakdown of support has, for some, resulted in the loss of their home, sometimes moving far from their family, or into hospital settings, resulting in fractured family relationships and loss of community networks. There have been high stress levels, confusion and uncertainty about the future, and the unsettling experience of receiving support from a new and unknown group of staff, often without a clear understanding of why things have changed, or why there has been a move to a new living environment. Many of these individuals have significant communication difficulties and find it difficult to understand and deal with changes; many are autistic and find it a struggle to accept new routines and structures; and for many, these frustrations and frightening experiences, will manifest as challenging behaviours, directed at themselves, others, or the environment.
3.4.2 Impact on Services
This also has a significant impact on services. An over-reliance on out-of-area placements to provide support to people with complex needs or challenging behaviours, can result in resources not being targeted at development within the local area. This can also result in an ongoing lack of local specialist provision, and a vicious circle in the use of out-of-area placements.
In addition, the lack of access to assessment and treatment units for those who need it, means that individuals who do require admission to hospital for appropriate reasons, for example, to assess or treat their mental health in a safe environment, may experience delays or barriers to admission due to a lack of appropriate beds being available.
The impact on the social care sector generally is also significant, with substantial amounts of money being spent on small numbers of individuals, with often no clear evidence that the support is appropriate or is meeting people's needs.
3.5 The Vision
The vision for people with learning disabilities and complex needs within Scotland is that everyone is able to lead full, healthy, productive and independent lives in their communities, with access to a range of options and life choices. This includes:
- That everyone with a learning disability should have access to the support they need: the right support, at the right level, and at the right time.
- That regardless of an individual's complex needs or challenging behaviours, they should have choices about where they live, who they live with, and how they are supported.
- That services will engage in genuine partnerships with people with learning disabilities and their families, not token representation, but a sharing of decisions and responsibilities, on the basis that any service developments should involve people with lived experience.
Support to people with learning disabilities needs to be framed in the broader context of equality and social justice, not just within the narrower focus of service delivery; in particular, that better services, and more importantly better lives, for people with complex needs is a human rights issue.
The most effective way forward is to take an assets-based approach which seeks to embrace the capabilities and talents of people with learning disabilities and align them to assets within their communities.
Email: Jacqueline Campbell