A Scottish research institute has launched a new programme of work seeking to better inform policy interventions that impact people with learning disabilities - a group the researchers say is largely invisible in current data.

The Fraser of Allander Institute is to embark on a new programme of work to rectify ‘not fit for purpose’ data currently held on people with learning disabilities.

Previous research by the institute found that a lack of robust evidence and data means bold government ambitions to improve the lives of people with learning disabilities are ‘unlikely ever to be achieved’.

Lead researcher Emma Congreve said that, despite people with learning disabilities having some of the worst outcomes in health and employment of any population, their data is not collected systematically in Scotland.

The FAI is now focused on finding solutions and evidence to enable positive change and ensure the impact of policies on people with learning disabilities is properly considered before, during and after development.

Maggie Fraser, Chair of People First Scotland – a disabled people’s organisation working for the human rights of people with a label of learning disability – says they remain hidden in Scottish society:

“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.”

A lack of regularly reported data and the use of data with inconsistent definitions of learning disabilities remain a key issue in designing effective policies, says the FAI.

The researchers say surveys must be made more inclusive to ensure people with learning disabilities are better represented in national datasets.

This programme of work comes at a crucial time, says the research team, with many policy areas currently in development that will greatly impact on the lives of people with learning disabilities – notably the National Care Service and a new learning disabilities, autism and neurodiversity bill set to come before parliament next year.

Applications from learning disabled, autistic and/or neurodivergent people in Scotland to join a lived experience panel to help the Scottish government design the new bill closed earlier this month.

Key tasks for the panel will include coming up with the best way to communicate with people who will be affected by the bill and how to ensure the consultation reaches the widest range of people of all ages and backgrounds.

Recent research by the FAI has found that, across a range of policy areas, outcomes for people with learning disabilities lag behind both the national average and disabled people in general.

Particular focus of the research team will be on employment, where policy interventions are currently scarce.

It is thought that employment rates of people with learning disabilities in Scotland are extremely low (between just 4 and 8% according to a recent survey).

However, previous research by the FAI has shown that some tailored employment programmes are successful in supporting people into sustained employment. The group’s upcoming work programme hopes to provide better evidence of what makes these initiatives effective.

Another area the FAI will explore is the impact of work on the lives of people with learning disabilities, considering too the business case for supporting people with learning disabilities into the workplace from the points of view of employers.

 

Read more: Fears learning disability champion no longer priority; New lived experience panel to advise government; New Disabled Children and Young People Transition Bill;

 

 

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