Information on Scottish Government's Lived Experience Advisory Panel for the Learning Disability, Autism and Neurodiversity Bill: FOI release

Information requested

• A list of disabilities that the Scottish Government includes in the definition of neurodiversity.
• The breakdown of disabled/non-disabled people on the Lived Experience Advisory Panel for the proposed Learning Disability, Autism and Neurodiversity Bill, the disabilities that are represented, the gender breakdown in male/female, and cis/trans, the racial makeup of the panel, the age breakdown of the panel, and the socioeconomic status of members of the panel.
• How the Scottish Government plans to work with neurodivergent people whose disabilities are not represented on the panel or existing stakeholder organisations

Response

I enclose a copy of some of the information you requested.

Definition of neurodiversity

Please find attached the definition of neurodiversity used during the panel recruitment process and the team’s plans to engage wider neurodivergent groups moving forward.

When designing the application process, we did not use a single definition for neurodiversity, accepting that the term does not have a single consistent definition in Scotland. Typically it describes natural differences in the way the human brain processes information.

The Scottish Government has previously published the following definition of neurodiversity as part of its national neurodevelopmental specification, which can be found here.

Neurodiversity is the statistical normal range of a function in a population at a particular age. Diversity is a trait of the whole group, not a specific individual.

Neurotypical describes individuals where a selective neurocognitive function falls within the prevalent societal norm.

Neurodivergent describes individuals where a selective neurocognitive function falls out with the prevalent range.

During the application processes, the team used the terms neurodivergent/ neurodivergence to describe people whose underlying neurology gives rise to lifelong differences in communication, thinking style and experience.

We were not prescriptive about which conditions would be represented on the panel and encouraged applications from a range of conditions such as:

• learning disability/intellectual disability
• autism
• fetal alcohol spectrum disorder (FASD) 
• attention deficit hyperactivity disorder (ADHD)
• learning difficulties (i.e. dyslexia, dyscalculia, dyspraxia)
• developmental language disorder (DLD)
• Tourette syndrome
• acquired brain Injury
• chronic fatigue syndrome

One of the roles of the lived experience advisory panel will be to discuss the definition of neurodivergence and share their views on what conditions should be covered by the bill consultation.

Working with neurodivergent people

To ensure the design of the bill consultation is informed by as many viewpoints as possible we are taking forward several strands of work.

Last year the Scottish Government undertook a pre-consultation exercise with our stakeholders. We held 30 workshops with 18 charities and third sector organisations (including disabled people-led organisations) between May and July 2022. The purpose of the report is to reflect the views of people with lived experience, rather than set out the policy intentions. You can find the report, a summary of the main findings, and details of the organisations who supported this work can be found online.

We are now facilitating three new panels with people with lived experience, professionals, and stakeholders. These panels will help us discuss and design a consultation exercise to be conducted later this year and will each have a role in designing a consultation that is accessible to different neurodivergent and wider equality groups.

The Scottish Government intends to launch the public consultation on the Bill in the second half of 2023. We will confirm the exact dates of the consultation in due course. The consultation will provide an opportunity for people across Scotland to express their views on policy options that could be included in the draft Bill, as well as on whether the Bill should establish a Learning Disability, Autism and Neurodiversity Commissioner.

At the same time, we are engaging with a range of organisations individually to support the development of the consultation, and as our understanding of the role and remit of a bill and potential commissioner grows we will seek to engage with wider disabled peoples organisations.

We are aware that alongside these activities more needs to be done to reach some groups of neurodivergent people such as those in black, asian, and minority ethnic communities. We are considering this further.

Lived Experience Advisory Panel demographics

While our aim is to provide information whenever possible, in this instance we are unable to provide some of the information you have requested because an exemption(s) under section 38(1)(b) (personal information) of FOISA applies to that information. The reasons why that exemption(s) applies are explained in the Annex to this letter.

About FOI

The Scottish Government is committed to publishing all information released in response to Freedom of Information requests. View all FOI responses at http://www.gov.scot/foi-responses.

FOI - 202300344704 - Annex

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