Invisible No More : Recommendations to Build Evidence-based Effective Action for People with Learning Disabilities in Scotland

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Congreve, Emma and Watts, Robert (2021) Invisible No More : Recommendations to Build Evidence-based Effective Action for People with Learning Disabilities in Scotland. University of Strathclyde, Glasgow.

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Abstract

Over the last 15 months, the Fraser of Allander Institute has been involved in a research programme looking at the lives of adults with learning disabilities in Scotland. In line with the ethos of the institute, our focus has been on investigating and analysing data to better inform and illuminate issues that need to be addressed. Our aim is to be able to better inform policy, both for those inside and outwith government. This programme of work has been different to much of the research that we undertake. Usually, we are able to bring the weight of economic analysis to a problem using existing data and evidence, and use established analytical frameworks to bring together results and conclusions. We often find new perspectives, clarify and illuminate issues, but data and evidence usually exist for us to build on. This is not the case with adults with learning disabilities in Scotland. There is a body of policy that acknowledges that the lives of adults with learning disabilities are constrained due to the actions, or inaction, of state, society and the economy. However, data and evidence lag well behind. Inevitably, this means that policy translates into words and ambitions, but often not effective actions. This is because it is difficult, if not impossible, to effectively operationalise a policy if you have no idea how many people need to draw on support, nor do you know what their current situation is and therefore what assistance they actually require. It is hard to think of another area of policy where so little is known about a population. This becomes even more difficult to comprehend when it is considered along with the fact that this population has some of the worst outcomes of any group in Scotland, including with regards to life expectancy. The fact that people with learning disabilities do not always have the ability to speak out means that the issues they face are perhaps easier to ignore. You can tell what is a priority to government by what gets measured. From what we have heard during our research, Scotland has a lot to prove before people with learning disabilities feel like they matter as much as others in the population. This report summarises the evidence we have gathered over the past 15 months. It sets out some clear steps that the Scottish Government needs to take to ensure it can make evidence-based policy for people with learning disabilities and can monitor the impact of these decisions over time. This is the fundamental basis of policy making, but the capacity within government to ensure this happens with learning disability policy does not appear to be in place. This report starts with an overview of policy and data, and then moves on to look at specific areas of the lives of people with learning disabilities and their families. This is a complex area, cutting across many ministerial portfolios, and with potential significant budgetary impacts. Getting to grips with this is difficult for any government and the Scottish Government at least does recognise that they need to do more. Our recommendations focus on where data and evidence gathering should be prioritised in order to ensure that policy ambitions can be realised more effectively. As the title of the report states, in order for change to be realised, people with learning disabilities must be invisible no more.

ORCID iDs

Congreve, Emma ORCID logoORCID: https://orcid.org/0000-0001-6845-316X and Watts, Robert;

Persistent Identifier

https://doi.org/10.17868/strath.00079453
CORE (COnnecting REpositories)