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The same as you? A review of services for people with learning disabilities

Appendix 3 Definitions

During the review, we consulted on how relevant and what purpose a definition in relation to using the term ‘learning disability’ would be.

We considered the need for an appropriate and meaningful description of the needs of people who may need services or other support because of their learning disabilities. We agreed that there is a need to make sure that people are not disadvantaged as a result of being unable to use appropriate services because of ‘definitions’ and ‘cut-off’ points. Likewise, people should not be ‘pigeon holed’ because of definitions which fail to recognise their ability to develop. It is vital that we identify the needs of people with learning disabilities in a way that allows services to respond appropriately.

In agreeing a definition we considered the following.

• How terminology is used and what it means across different agencies and professional groups. For example, there is currently confusion between terms such as ‘learning difficulty’, and ‘learning disability’.
• What effect using inclusion and exclusion criteria would have.
• The effect of redefining learning disabilities under the mental health legislation.
• The links with recent policy guidance.
• The views of carers, users and other people with an interest.

Terminology

The term ‘learning disabilities’ is now used throughout the UK particularly in health and social care settings. We are aware that there are some mixed views about this. We can review this (not necessarily the definition) at some point in the future depending on the views of users, carers and others. For interest, the term ‘intellectual disability’ appears to be replacing ‘learning disability’ in academic journals and in international organisations.

Inclusion and exclusion criteria

It is generally accepted that we can refer to a person as having a ‘learning disability’ if the disability has been present before the age of 18. So, we do not consider a person with previous ‘normal’ functioning, who has a brain injury after age 18 to have a learning disability. Learning disability services may sometimes provide care and support but it is better if appropriate specialised services for people with brain injuries are available. This review does not cover the needs or proposed services for this group.

We also do not include people with specific learning difficulties such as dyslexia in our definition of learning disability.

People with learning disabilities can experience the same range of mental and physical disorders as the general population. If a person’s first diagnosis is learning disability, their needs may best be met by learning disability services and supported by appropriate general and specialist services. However, we should not deny people with learning disabilities access to other specialised services because they are only seen as people with learning disabilities.

The legal background

The Mental Health (Scotland) Act 1984 is currently being reviewed by the Millan Committee and we believe this will mean the current terminology such as mental handicap, mental impairment and severe mental impairment will change. The proposed Adults with Incapacity Bill⁹⁵ has taken on board the current Mental Health Act (Scotland) 1984 definition, although this may be considered again after the Millan Committee’s recommendations. Appendix 5 provides a detailed account of the legal framework.

Policy guidance

The Scottish Executive has recently issued some reports of relevance to our review of services^{96, 97}.

The Riddell report uses a definition of ‘severe low incidence disabilities’ while the Beattie report refers to the needs of young people ‘who require additional support to make the transition to post school education and training or employment’. This can include people with physical disabilities, learning disabilities, mental health problems, low education and attainment and social, emotional and behavioural difficulties. There is some overlap in relation to the needs of people dealt with by Riddell, Beattie and our own review.

Users’ and carers’ views

Our analysis of the views of people who wrote to us and our meetings with users and carers identified a range of opinion on using a definition of learning disability and how relevant it is. We have taken account of these views in developing a definition.

The definition

In developing our definition of learning disability, we have taken a flexible approach while making sure that there is a clear definition to help identify need and target resources. An analysis based on needs means that learning disability is not seen as an ‘all-or-nothing’ condition.

The following definition is based on work done elsewhere⁹⁸:

‘A learning disability is a significant, lifelong condition which has three facets:

• reduced ability to understand new or complex information or to learn new skills;
• reduced ability to cope independently; and
• a condition which started before adulthood (before the age of 18) with a lasting effect on the individual’s development.’

For the purpose of the review, it includes people with autistic spectrum disorders.

People with learning disabilities will need a range of support depending on their needs:

Everyday needs, for example, a place to live, financial security, friendships and opportunities to have a meaningful day.

Extra needs because of their learning disability, for example, help:

• with getting about;
• to use services;
• to understand information; and
• with communication.

Complex needs, for example, support in crisis situations, treatment to improve mental health or to help reduce challenging behaviour.

For any one of these needs the level of support necessary may vary. An individual may need the following.

Occasional and short-term support (intermittent support)

The person will not always need the support or need only short term support during their life. Support may be high or low intensity, simple or complex. It is used for a specific purpose and to provide general support for a person on an ‘as-needed’ basis. It may also be necessary to support someone in a certain setting.

Time-limited support

This may be high or low intensity and complex. It is limited by time or by some other resource and is typically to support the person through a difficult period or when moving from one stage to another in their lives.

Regular long-term support

This is support involving regular help (for example, daily) in at least some environments and is not limited by time.

Constant and highly-intensive support

This is constant and very intensive support provided across different environments. It could involve medical care to keep the person alive. High-intensive support typically involves more staff and resources.

This approach to a definition should help agencies develop a stronger way of assessing needs and allows for a shared understanding across the different agencies and professional groups.

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