Learning Disability, Autism and Neurodiversity Bill: scoping analysis 2022

3. Executive Summary

This report does not analyse or make recommendations concerning the policy content of a potential Bill. Instead, it is a factual analysis of comments made during scoping events.

This report is informed by thematic analysis of 986 comments generated during 30 scoping events. Comments were made in response to broad questions that we used to initiate discussions, though were also generated during wider discussion that veered away from these questions.

The majority of comments were made by neurodivergent people, though a small number were made by people who were the family members of, or carers for, neurodivergent people.

Analysis was split between three members of our team to manage the workload, and to dilute the bias that a single analyst might bring to the task. We used mind mapping and link charting techniques to identify and cluster similar responses under shared themes. Based on these comments, we have identified the following:

Our analysis suggests that there is a mix of support for and scepticism towards the creation of a Learning Disability, Autism and Neurodiversity Commissioner amongst the 18 different organisations with whom we worked during the initial scoping of the potential Bill. This division is not determined by neurotype, as a range of mixed neurotype groups have expressed both support for and scepticism towards the Commissioner.

Whilst some of the DPOs with whom we worked were supportive, or were open to exploring the idea, of a Commissioner, the majority of DPOs were more sceptical.

Support for a Commissioner was overall higher in organisations that are not led by disabled people (and which therefore do not qualify as DPOs), though those organisations also represent large numbers of neurodivergent people.

There was consensus amongst participants in the scoping work that a potential Bill should cover people without a formal diagnosis of any of the conditions that this Bill might cover. Participants consistently thought that those waiting for diagnosis should have access to the support they need and expressed the importance of getting a timely diagnosis. Furthermore, many participants supported the notion of a Bill with a wide scope, covering the full range of neurodivergent presentations.

Some participants were less supportive of the scope of a potential Bill being as broad as this. They expressed concern that too broad a scope would not effectively target the needs of any individual or group. Other participants stressed the importance of naming specific conditions within a potential Bill to ensure that the groups associated with these conditions were sufficiently visible and supported.

Participants expressed strong preferences for language associated with the social model of disability, rather than a medical model, to be used throughout a potential Bill.

There was broad support for terms such as 'neurodiversity' and 'neurodivergence'. However, participants stressed that language needed to be as inclusive as possible, and to be adaptable to social changes. Some groups of people with learning disabilities expressed dislike for terms such as 'neurodiversity' and 'neurodivergence'.

The most frequently mentioned topic, measured by number of individual comments, was that all autistic people, people with learning disabilities, and neurodivergent people are likely to be discriminated against. These comments thought people need protection from this discrimination, as well as increased inclusion and recognition of their inherent value. This finding confirms what we already know from previous work on the Towards Transformation Plan. Examining comments made around discrimination in more detail directs us towards specific issues of discrimination, and possible solutions, that a potential Bill could take into account.

The second most frequently mentioned topic was concern that a potential Bill must cover a wide range of neurodivergent people, and questions about whether those with dyslexia, dyspraxia and ADHD would be included in such a Bill's remit; i.e. what conditions are considered to make a person neurodivergent?

Similarly, a large number of participant comments stated that those without a formal diagnosis must be included in a potential Bill's remit. Members of several communities thought that it was important to ensure that conditions were specifically named within a potential Bill. These participants agreed that this approach would help reduce the risk of people with those conditions being overlooked by service providers, and would help increase public awareness of those conditions.

The most commonly mentioned means of combating discrimination against neurodivergent people was education and training, both for public bodies and for neurodivergent people themselves. This included the need for greater awareness, education/training and understanding of people with learning disabilities and autistic people and their needs, particularly for public bodies. A number of people also stated that greater education on and awareness of human rights is needed. Education and training towards this end should be communicated in a clear and accessible way.

Many participants thought that a potential Bill should enforce person-centred support in a range of settings, and across the lifespan. Participants identified a number of ways in which such support could be achieved, and the areas in which it was most needed.

The need for accessible independent advocacy to assist neurodivergent people in enforcing their rights was mentioned often – encouraging self-determination and increasing the accountability of services.

Ensuring provision of support in employment, education, and healthcare settings, including mental healthcare, was also often mentioned. Finally, consistent and high-quality support for transitions between these various settings, and between various life stages, was sometimes identified as desirable.

Many participants stressed that a potential Bill should be constructed to complement existing legislation, services, and the work of public bodies that impact on neurodivergent groups including:

• the Equality Act 2010
• the National Care Service Bill
• existing Commissioners.

A number of comments mentioned a need for alignment with existing or upcoming statutes and enforcement bodies, or else questioned the need for additional legislation that could risk duplicating existing human rights provisions.

One of the key themes for discussion during workshops was how the Scottish Government could improve engagement to reach as many people with lived experience as possible. Discussions around this theme resulted in the following recommendations:

Participants suggested a range of ways in which the Scottish Government can ensure that its work on a potential Bill is inclusive, accessible, and consistent with a human rights-based approach including:

• consulting with people in their own communities through local events
• working with schools
• delivering communications in a range of formats and languages
• issuing regular communications on developments on a potential Bill.

There are some clear key areas where further work will be required with our lived experience, stakeholder and professional panels, and which will be further explored during a formal consultation on a potential Bill in 2023.

• There is no consensus currently on the role of a Commissioner. We will explore this further with stakeholders.
• There does not appear to be consensus regarding definitions of neurodiversity and neurodivergence. This includes who people think should be covered by the remit of a potential Bill.
• Given the limited number of organisations with whom we were able to engage as part of the scoping process. We are unsighted on the views of certain neurodivergent communities, including ADHD, dyslexia, and dyspraxia communities who did not take part in the scoping work. We will seek to recruit members of these communities to the Lived Experience and Stakeholder Advisory Panels as a step towards redressing this gap, and will work with our Panels to ensure that those communities are fully involved in the public consultation on a potential Bill.
• There are some indications throughout the scoping work of areas where people feel that their human rights should be strengthened. However, further work is needed to consider the interactions between this potential Bill and of human rights treaties in Scotland, and whether and how any additional rights should be set out or strengthened here.