This article is part of the Fraser of Allander’s programme of work looking at support and opportunities for people with learning disabilities in Scotland. Further information about this work can be found at https://fraserofallander.org/learning-disabilities/
In this article we try to focus on what we know about the number of adults living with a learning disability and the source of this data. Currently, we do not have an authoritative estimate of the size of the learning disability in population in Scotland. This was an area we covered in our first report and are revisiting again in a little more detail in this article.
Agreed statistics on the learning disability population is important in order for government is able to design policy and assign the right resources to provide adequate support to local authorities and to meet other related outcomes, such as eradicating poverty and increasing employment rates for people living with a disability.
At present, the data that exists is incomplete and, at first glance, presents an inconsistent picture. Confusion and lack of data are often barriers to visibility of issues in mainstream debate and can make it difficult to get widespread agreement on whether an issue should be prioritised. This is not an acceptable situation to be in.
A reminder on definitions
People who are living with a learning disability will not have necessarily have received a diagnosis of a condition which fits neatly into a ‘learning disability’ box.
The Scottish Government’s Keys to Life strategy defines a learning disability 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.”
“Whilst people with a learning disability “will need more support than their peers to understand information, learn skills and lead independent lives”, this does not mean they are incapable of playing an active role in our society and economy.
Here we review the main sources of data that are currently available.
20 years ago there was an estimate published by the Scottish Government that there were 120,000 people in Scotland with a learning disability, with about 30,000 of them known to local authorities or health services[i]. It also estimated that, due to people on average living longer, the number of people with a learning disability was increasing.
We continue to have an estimate of on adults with learning disabilities known to local authorities, for example, due to social work services they use. This data is currently collated and reported annually by the Scottish Commission for People with Learning Disabilities (SCLD) in their Learning Disabilities Scotland Statistics (LDSS) report. As of 2019, there were approximately 23,500 adults with a learning disability known to local authorities across Scotland and reported in the survey. This equates to around 0.5% of the Scottish population.
There are two key points to note with interpreting these figures, especially when looking at what may have happened over time. Firstly, the number of people known to local authorities will depend on the services offered by local authorities. If eligibility of support has changed over time, then these numbers will have been affected. Secondly, not all local authorities currently provide an estimate but this should improve in future (see next section of this article).
These numbers are not meant to be an estimate of the full population but nonetheless provide a helpful indication of those who are currently eligible for support. They also included a small number of autistic people who do not have a learning disability but use social care support.
The pupil census is another source of information and provides an estimate of the number of children currently in Scotland’s schools who are receiving support in 2019. There were just over 13,000 children recorded as having a learning disability (2% of pupils) and around 33,000 have a learning disability and/or autism (4% of pupils).
There is an advantage for a child at school who is on the boundary of having a learning disability to be recorded as having a learning disability as this will qualify them for additional support[ii] hence there is reason to think that these figures may be an upper bound estimate. This should be taken into account if extrapolating these figures to the whole population. Tragically, the lower life expectancy for people with learning disabilities also means that the size of adult population is likely to be smaller than a simple extrapolation of the school age population would imply.
Thirdly, there are figures from the whole population Census that is carried out (usually) every 10 years. There is an estimate from the 2011 census that had a self-reported figure of people with learning disabilities at just over 5,000 children (aged 0-15 years) and 21,000 adults (aged 16 and over). It is difficult to know why this figure is the lowest out of all estimates given but may highlight the issues with tick box questions for a complex issue such as this. The question included in the Census asked people to report whether they or someone in their household had a learning disability with Down’s Syndrome given as an example. As discussed in our first report, the term learning disability covers a wide range of people with a range of different conditions. Not all people who the Scottish Government’s Keys to Life refers to might relate to term learning disability and the example of Down’s Syndrome given. The user testing that was carried out on the testing included people with Down’s Syndrome, but no other people with a learning disability. Whether this is the full reason why this number is lower than other estimates is unknown.
Improvements in the pipeline
There are no changes on the horizon that we can be confident will provide a full population estimate but there is work ongoing to improve the quality of data, particularly with regard to health.
Since 2015, the Scottish Government has funded the University of Glasgow to create a Scottish Learning Disability Observatory (SLDO), to understand more about the health inequalities faced by people with learning disabilities and to make those needs more overtly visible. Part of their work is about improving what is already being collected and identifying opportunities where it would be valuable to increase the information available, working with stakeholders across Public Health Scotland and in the Scottish Government to support this.
SCLD and Public Health Scotland have been engaged in a process of amalgamation between the Source Social Care Survey and Learning Disability Statistics Scotland (LDSS) for a number of years. This amalgamation will situate learning disability data within a routinely collected health and social care dataset, increasing the potential for data linkage, as well as reducing data provider burden. This hopefully will be a positive step forward, yet there will be a process of transition, and it will be 2021 before the next tranche of date will be available.
The next population Census in Scotland will be carried out in 2022 and we understand there is work underway with stakeholders to formulate the question that will be asked. It will be a few years before we will see the results of the next census and whether the reported figures seem more in line with expectations based on other surveys.
Where does this leave us?
In our first report, we suggested that the Scottish Government could look into whether they could use their own data collections to better disaggregate the population living with a disability. This would follow the process used for getting better data on relatively small groups in society, such as different minority ethnic groups, by replicating the same ‘core question’ in a number of different surveys in order to enhance the sample size.
These would not be instead of administrative data already collected which have a purpose defined by the relevant service. A combination of survey data and other data from administrative records to create a fuller picture would be the ideal way forward. That would include the pupil census, local authority data and other sources, for example, GP records. Ideally, it would be possible to read across all data, understand their differences, and be able to arrive at an agreed figure with stakeholders that can be used consistently in circumstances when a population estimate would be useful.
The next best option is to avoid citing one figure to refer to the population. This would acknowledge the uncertainty surrounding the size of the population rather than giving the false impression that the size of the population is known. It would also prevent any perception of cherry picking of statistics to suit the argument being made.
Presenting a range with a lower bound informed by the census statistics and a higher bound taken from the pupil census may be the most sensible approach at the moment.
It is also worth remembering that it is not just people living with a learning disability who will be impacted by the support and opportunities available. Unpaid carers are directly affected by the support available, and other family and friends are also affected by the quality of life of the people they care about.
Our survey of 1000 people in Scotland that we carried out with YouGov for our first report found that a third of respondents either have or know someone that has a learning disability. As we noted in that report, this certainly is not a niche issue that justifies such low visibility in mainstream policy making and in public discourse.