The keys to life - Improving Quality of Life for People with Learning Disabilities

Definitions and numbers

Who are people with learning disabilities?

The original policy document worked hard at coming up with an accurate definition which focused on what people with learning disabilities could do, and many organisations adopted this as the basis on which they provided support to individuals. We have re-visited this definition and want to maintain it. It is that:

People with learning disabilities have a significant, lifelong, condition that started before adulthood, which affected their development and which means they need help to:

• understand information;
• learn skills; and
• cope independently.

But this is only part of a description. It does not capture the whole person who can be much more - a friend, a family member, a community activist, a student, a parent, an employee or employer to name just a few roles. It is essential that we keep in mind all of these possibilities.

The policy covers the lifespan of an individual and for the purposes of this policy people with learning disabilities comprise of those with learning disabilities being present before the age of 18. Another distinction to make clear is that we do not include people with specific learning difficulties such as dyslexia.

People with learning disabilities should have a range of support and services to meet the following needs:

Everyday needs

For example, a place to live, security, social and personal relationships, leisure, recreation and work opportunities.

Extra needs because of their learning disabilities

For example, help to understand information, support to make decisions and plan, learn skills, help with communication, mobility or personal care.

Complex needs

For example, needs arising from both learning disabilities and from other difficulties such as physical and sensory impairment, mental health problems or behavioural difficulties.

For any of these needs the level of support will vary. A person with learning disabilities may need:

• occasional or short-term support;
• limited support, for example, only during periods of change or crisis;
• regular long-term support, perhaps every day; or
• constant and highly intensive support if they have complex or other needs which are related.

Learning disabilities and autism

The same as you? was a policy for people with learning disabilities and for those on the autism spectrum. In 2011 the Scottish Government published the first Scottish Strategy for Autism⁴. We recognise that some people with learning disabilities are also on the autism spectrum. However, people on the autism spectrum do not necessarily have learning disabilities. People with learning disabilities who also have autism will benefit from both policies.

What are the numbers of people with learning disabilities?

About 16,000 school aged children and young people, and 26,000 adults in Scotland have learning disabilities and require support. Additionally, there are considerably more adults (almost three times as many) who have learning disabilities and had additional support needs when they were at school, but who do not now identify themselves, and are not identified by others, as being disabled, and who are not currently using statutory learning disabilities services. There are more boys and men with learning disabilities than girls and women, although at older ages the gender distribution is more equal, as women typically live longer.

The proportion of people in the population with learning disabilities is influenced by a wide range of factors. It may seem surprising that estimates vary, but there are valid reasons, such as the definitions of learning disabilities used, the age groups included, and the year the estimate was made. The main approaches to estimating the number of people with learning disabilities in Scotland are by using information from Scotland's routinely collected statistics, or estimates based on statistical principles about the distribution of intelligence in the population.

Information from Scotland's routinely collected statistics

There are three main sources of relevant information that are routinely collected in Scotland. An annual census of pupils and teachers at all publicly funded schools (95% of all school-aged children in Scotland) provides information on the number of school age children with learning disabilities. The 32 local authorities return annual statistics on their adult users of learning disabilities services via the eSAY project, the information is collected in a standardised form and collated, analysed and published as official statistics by the eSAY project. General practices who participate in certain contractual arrangements with their Health Board (96% of GPs) are required to keep a database of their registered patients who have learning disabilities and are over 18 years of age.

In September 2012 there were 15,979 school children with additional support needs due to learning disabilities; 64% were boys and 36% were girls.

In 2011, the eSAY database included 26,036 adults with learning disabilities; 58% were men and 42% were women. 705 were 16 and 17 year olds who had left school. This figure is an undercount for that age group, so it is more precise to say that eSAY includes 25,331 adults with learning disabilities over the age of 18. In 2011-2012, 24,998 adults over 18 years were on the learning disabilities databases kept by GPs, suggesting there are 26,097 in total in Scotland when the non-participating practices are taken into account.

eSAY also collects information on ethnic groups and in the 2011 data collection, this showed that 22,589 people with learning disabilities were classified as white and 374 people were recorded as being of 'other' ethnic background. It was estimated in 2004 that approximately 25% of new entrants to adult social care with learning disabilities will belong to minority ethnic communities⁵.

People with learning disabilities and families from black and minority ethnic (BME) communities often face major barriers in accessing services and support that meets their needs.

Estimates based on statistical principles about the distribution of intelligence in the population

The way intelligence is spread in the population is similar to other human characteristics, such as height. The majority of people are in the middle of the distribution, and few people are at either of the extreme ends; the further away from the typical people in the middle, the fewer the people there are (e.g. extremely tall or extremely short in stature; genius or learning disabilities). Statisticians define the extreme ends as about 2% of the population at the lower end, and 2% at the higher end. Measurements of "intelligence quotient" therefore use 70 as the cut off point for learning disabilities.

The same as you? was published before eSAY existed, and before GPs held a database of their adult patients with learning disabilities, so it pragmatically used this statistical definition of learning disabilities to estimate that 120,000 people in Scotland had learning disabilities. This was the best way to estimate the number of people with learning disabilities back in 1999/2000. It is accurate to the extent that the number includes all people statistically likely to be more than two standard deviations lower than the average on measures of intelligence.

However it is also inaccurate, because research has shown that a higher proportion of children than of adults have learning disabilities, and also that people with learning disabilities with health needs die at a younger age than other people, so in older age groups there is a considerably lower proportion with learning disabilities. In other words, the statistical estimate is progressively more inaccurate with older age groups. Also, this is a statistical definition; it does not take account of skills, gradual acquisition of skills, or of enabling supports that might protect a person from being disabled by their slower rate of learning. The cut-off point is arbitrary; if it were slightly higher - an IQ less than 75, rather than an IQ less than 70 - this would more than double the number of people included as having learning disabilities, and IQ cannot validly be measured with this degree of accuracy.

Research studies

There has also been research to try to establish how many people have learning disabilities. This is a challenging and expensive task, particularly so for adult populations, and there are limitations to the work that has attempted to do this. Even the most recent studies have a wide variation in reported rate, and particularly so for mild learning disabilities. Most studies have been conducted with children, and very few with adults. The rate of mild intellectual disabilities is influenced by many cultural and societal factors that determine whether a mild intellectual impairment is likely to result in a functional disability, contributing to geographic differences. The Health Needs Assessment for People with Learning Disabilities in Scotland⁶ reviewed studies up to 2003, and found that although there is a large variation in reported rates for mild learning disabilities, the range for moderate to profound learning disabilities was more consistently reported, varying from 2.7 to 3.8 per 1,000. As far as more recent studies are concerned, the considerable differences in their methods and the study findings for mild learning disabilities are such that it is not appropriate to average their results, and indeed there are likely to be some genuine geographic differences⁷.

Which of these estimates are most accurate?

Determining the most accurate estimate of the number of people with learning disabilities depends upon the purpose for which the information is required. This is because learning disability is not a "condition" with a nationally agreed definition; there are many different definitions. There is a difference between a statistical definition and a social definition. The World Health Organisation (ICD-10), American Psychiatric Association (DSM-IV), and The same as you? quote a definition that includes problems in adaptive functioning (skills) as well as a significantly lower intelligence level than average, so they have leaned towards a social definition. This is probably the most appropriate approach when planning statutory services and supports, because unless a significant proportion of the population who are not currently calling upon services suddenly start to do so (which seems rather unlikely), then such plans should be based around the needs of the population likely to use those services.

Should the Government introduce new policies that require individuals to have to learn to behave in a new way - e.g. requiring certain information to be provided annually by each person via the internet, or introducing new national health screening programmes that might be difficult to understand and comply with if your learning is slower - then a statistical definition (adjusted for age) is probably a more appropriate estimate of the number of people who may struggle with the change. It is, however, just that - an estimate.