Robust data and evidence is lacking across ‘almost all areas of the lives of people with learning disabilities’, a think tank has warned.

A critical report from the Fraser of Allander Institute has found incomplete datasets or estimates based on ‘studies from elsewhere’ are being used by the Scottish government to develop policy.

This absent data, the researchers say, means ‘bold’ government ambitions are ‘unlikely ever to be achieved’.

They recommend the government recognise current data ‘is not fit for purpose’ and that it should not be used ‘unless appropriately caveated’.

Speaking today on Good Morning Scotland, the report’s lead author, Emma Congreve, said: “People with learning difficulties have some of the worst outcomes of any population in pretty much every area you can think of.

“But the striking thing for us as researchers is that data on the scale of the issues for this population just isn’t collected systematicity.

“So, we don’t even know how many people in Scotland have a learning disability.

“And our recommendation today really is to call on the Scottish government to rectify this and to build better evidence-based policy so lives can be improved.”

A new strategy to reduce the number of people with learning disabilities who are cared for in inappropriate institutions is set to be announced by the Scottish government, healthandcare.scot understands.

The covid-19 pandemic exposed a lack of routine data on people with learning disabilities, with challenges even determining the number of virus deaths.

Further issues sprang up with the roll-out of the vaccination programme and gaps in GP records.

Currently, the best information on the number of people with learning difficulties is from schools, where there is often the most support, the report says.

But once people leave education, usually only those with more serious conditions are counted – as many will not come in contact with public services again.

Further data gaps in social care are highlighted by report authors, who say it is challenging to measure the total amount spent on support for people with learning disabilities and how eligibility levels vary from area to area.

The establishment of the National Care Service could solve some of these problems, the authors say.

But they say robust data should be collected on how these changes are affecting those drawing on support.

Without this, policymakers will continue to not fully understand or make positive change in ‘almost all areas of the lives of people with learning disabilities’.

The Scottish government have committed to establishing an Autism and Learning Disability Commissioner to guide policy, which would make Scotland the first country in the world to do so.

But Ms Congreve says this will not go far enough.

She said: “The Scottish government are really thinking about what they can do in terms of better representing people with learning difficulties. A lot of this is focused on policy.

“But what we still feel they are lacking is data and evidence that can really underpin effective policy making, that is at the heart of policy making, and that is just one feature we don’t feel is being properly addressed.”

 

Read more: Learning disability support cuts “under the radar”; Learning disability support cuts leave families adrift; Autism support: ‘real change not evident’

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