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New research on learning disabilities in Scotland

In 2020, the Fraser of Allander embarked on a programme of research looking at the barriers and opportunities for people with a learning disability in Scotland’s economy and wider society. Our work, funded by the charity Acorns2Trees, opened our eyes to this often overlooked group of people who can contribute much, but often see their choices constrained. Discrimination is certainly part of the issue, but misunderstanding is more often likely to be the cause for the lack of inclusion of people with learning disabilities in our economy and society.

Throughout many areas of public life learning disabilities are absent from discussion and invisible in the data. For example, evidence suggests that very few people with a learning disability have the opportunity to work, yet regular and robust employment statistics are not available for this group of the population so we are not able to tell if things are getting better, or worse over time.

This is why the Fraser of Allander Institute is delighted to announce a new programme of work exploring how to improve data on people with learning disabilities and employment outcomes. Where our previous work highlighted barriers and inequalities, our new project is aimed at finding solutions and evidence to enable change.

A reminder on definitions

Part of the issue is that no two people with a learning disability are the same. A learning disability is not a medical condition in itself. Rather, it is a term used to describe a number of impairments that have a number of elements in common.

The Scottish Government’s Keys to Life strategy defines a learning disability as:

“… significant and lifelong. It starts before adulthood and affects the person’s development. This means that a person with a learning disability will likely need help to understand information, learn skills and have a fulfilling life. Some people with a learning disability also have healthcare needs and require support to communicate.”

Sometimes, learning disabilities are confused with learning difficulties, such as dyslexia or ADHD, and autism. There may be some common elements, and it is true, for example, that many people with a learning disability have autism. However, the terms should be not used interchangeably. Internationally, learning disabilities are sometimes referred to as intellectual disabilities.

What did we learn in the previous research programme?

1. People with learning disabilities have much poorer outcomes than other disabled people

Across a range of policy areas, outcomes for people with learning disabilities lag behind the national average and outcomes for disabled people in general.

For example, people with learning disabilities have a life expectancy 20 years lower than the general population.

2. Employment rates are unknown, but are thought to be extremely low

The most recent (2019) SCLD population survey found that between just 4 and 8 per cent of local authorities’ learning disability service users were in employment. Employability services vary by local authority in Scotland, and many do not offer tailored support to people with learning disabilities.

Our case studies on employment support highlighted success stories and provided examples of what works but replicating this success at scale has proved elusive. It will be difficult to meet the Scottish Government’s target on halving the disability employment gap without improving outcomes for people with learning disabilities.

3. Covid-19 had a disproportionate impact on the lives of people with learning disabilities

During the Covid-19 pandemic, an SCLD survey of people with learning disabilities found 66% of respondents had seen a reduction or complete withdrawal of social care support due to pressures on the system. Throughout the pandemic, unpaid carers (often family members) stepped in to provide care that was withdrawn by the social care system. During the first wave of the Covid-19 pandemic, people with learning disabilities in Scotland were twice as likely to become infected than the general population. They were three times more likely to die from Covid-19. Despite daily Covid-19 updates, it took over a year for this finding to be reached.

4. Unpaid carers provide significant public value

We surveyed unpaid carers in Scotland and found that, on average, it would have cost the taxpayer £114,000 per year to deliver equivalent care to that provided by each unpaid carer in our sample. However, many that we surveyed told us that they felt undervalued by society and felt then they needed more support.

5. Data is a significant barrier to effective support being put in place

All of the statistics above are based on the best evidence available, but there are still unknowns and a lack of regularly reported data. Throughout our programme of work, we encountered data that uses inconsistent definitions of learning disabilities or doesn’t include learning disabilities at all.

There is work to be done to make surveys more inclusive to ensure better representation of learning disabilities in national datasets.

“People with a learning disability are often considered last, if we are considered at all. We are not seen as important, and our human rights are not protected as they are for other citizens. We are not expected or supported to live our life like other citizens. Scottish society fails to respect us. We are hidden, we are invisible.”
Maggie Fraser, Chair, People First Scotland

Priorities for the next research programme

Data

Addressing the scale of inequalities faced by people with learning disabilities requires concerted action from government, industry and wider society. But effective action needs to be based on robust evidence.

Whether it’s in the labour market, health outcomes, the justice system, or any other area of public life, it is difficult to understand the scale of action required without good data that shows what life is like for people with learning disabilities. This could enable effective prioritisation so that governments can allocate resources to where they could make the biggest difference. It would also make much of the inequalities set out above more visible in public discourse.

Furthermore, it is important for governments to collect evidence on its own policies to understand what works. There are well meaning policies in place to support people with learning disabilities, yet there is little evidence that outcomes have substantially improved over the longer term.

Does Scotland’s supported employment offer improve labour market access for people with learning disabilities? If so, to what extent? Local authorities have tightened eligibility criteria for social care support, so how many people with learning disabilities are missing out on support that they would previously have been entitled to? How many people with learning disabilities live below the poverty line and what difference are social security payments making?

Answers to these questions would help design more effective policy around learning disabilities, but this requires detailed data to be collected. This is especially the case when budgets are stretched and every pound needs to be spent as effectively as possible.

Our upcoming works aims to set out what we know and don’t know about people with learning disabilities, and to explore how the data that we have available can be improved.

It is already clear that there are many issues to work through. For example, not everyone with a learning disability will identify as such, surveys might not be designed in a way that’s accessible to someone with a learning disability, some people might not want to disclose their disability, and there might be confusion as to how we define learning disabilities.

A focus on employment

A person’s career is often a big part of their life and identity, but for many people with learning disabilities, paid work is out of reach. This is despite the fact that many express a desire to work and have skills and talents to offer employers, especially when given the right support.

Policy interventions here are scarce, with few people with learning disabilities having the opportunity to participate in an intensive supported employment programme tailored to their support needs.

The available data suggests that employment rates for people with learning disabilities are extremely low.

There is nothing inevitable about this outcome. Our previous report highlighted supported employment and transition to work programmes that have high success rates at supporting young people with a learning disability into sustained employment. These success stories provide evidence of what works.

Our upcoming programme of work aims to provide further evidence on what makes a successful policy intervention here. We want to learn from people with lived experience and explore the impact that working has on the life of someone with a learning disability who might not have had the opportunity to work without support. These impacts might go beyond financial consequences.

We also want to explore this from the employers’ perspective to understand the business case for supporting people with learning disabilities into the workplace.

The timing of our work

This programme of work comes at a crucial time for the issues at stake with many areas of policy development that will impact on the lives of people with learning disabilities, including:

  • The Scottish Government’s newly structured employability offer, No One Left Behind, is being rolled out, with the first stages implemented in 2019.
  • A new Learning Disabilities, Autism and Neurodiversity Bill is scheduled to come before Parliament in 2024, along with a new Human Rights Bill that will enshrine the UN Convention on the Rights of Persons with Disabilities into Scots law, subject to devolved competencies.
  • A refreshed learning disability government strategy is due within the next few years, replacing the existing Keys to Life.
  • The process of establishing a National Care Service is already underway, with potentially far-reaching consequences for many people with learning disabilities and their families.

We hope this work will contribute to the evidence base that ensures that the impact on people with learning disabilities are properly taken into account, to build effective policy that can improve lives. Look out for more in the weeks and months ahead!

Authors

Knowledge Exchange Associate at the Fraser of Allander Institute

Emma is Deputy Director and Senior Knowledge Exchange Fellow at the Fraser of Allander Institute

Allison is an economist at the Fraser of Allander Institute.

Ciara is part of the Knowledge Exchange Team at the Fraser of Allander Institute.