Learning Disabilities, Autism and Neurodivergence Bill: consultation analysis

Introduction

Background

As part of a national commitment, the Scottish Government is developing a new Bill to be introduced for people with learning disabilities and neurodivergent people in Scotland. The main focus of the Bill is to:

(i) ensure progressive and positive change;

(ii) ensure better protection of people’s human and civic rights; and

(iii) ensure greater accountability where examples of discrimination and bias exist.

The Bill is considered to be essential in ensuring that people with learning disabilities and neurodivergent people in Scotland can lead active and fulfilling lives free from marginalisation, stigmatisation, exclusion or disadvantage.

In order to inform the development of the Bill, the Scottish Government conducted a public consultation. The Scottish Government worked extensively with three advisory panels to support the development of the consultation options, including a Lived Experience Advisory Panel (LEAP), a Stakeholder Panel, and a Practitioner Panel.

The consultation was wide ranging and sought feedback on both overarching topics, namely statutory strategies, mandatory training, inclusive communications, data, independent advocacy, and accountability, as well as specific sector and policy linked topics including:

• Health and Wellbeing;
• Mental Health and Capacity Law;
• Social Care;
• Housing and Independent Living;
• Complex Care;
• Relationships;
• Access to Technology;
• Employment;
• Social Security;
• Justice;
• Restraint and Seclusion;
• Transport;
• Education; and
• issues related specifically to children and young people and the transition to adulthood.

The Public Consultation

The consultation was open for four months (one month longer than Scottish Government guidance states for public consultations), from 21 December 2023 to 21 April 2024. It sought feedback from a wide range of respondents. This included, but was not limited to: people with learning disabilities, autistic people and neurodivergent people; their families, friends, carers and supporters; members of the public; and organisations including those which represent, support and advocate for people with learning disabilities and neurodivergent people, as well as those who provide services.

In addition to the main consultation questionnaire available on Citizen Space (the Scottish Government’s online consultation portal), a range of alternative formats were also available. This included a Short Guide, Easy Read versions of the various consultation sections, an audio version of the consultation, British Sign Language (BSL) translation of the consultation, and a child friendly version.

Most sections in the consultation document were set out in the same way, as follows:

• what the Scottish Government already knew about the topics and issues;
• what the LEAP had contributed about each topic, their lived experience of it, and suggested changes;
• the ambitions and vision for future outcomes;
• an overview of what happens now in terms of existing rights, duties, and current practice related to each topic;
• what the Scottish Government and their partners are already doing to improve things for people with learning disabilities and neurodivergent people; and
• proposals for what the Bill might be able to do to improve things for people with learning disabilities and neurodivergent people.

Each section generally included three questions to identify which proposals respondents agreed with and why, which they did not agree with and why, and if there was anything else that should be considered in relation to the topic.

To support the written consultation and proactively seek feedback from under-represented and hard to reach groups, the Scottish Government commissioned the Scottish Commission for People with Learning Disabilities (SCLD) to undertake work aimed at promoting, signposting and encouraging groups and organisations to engage with the consultation and provide a response. In addition to providing such support, the SCLD gained significant insight and learning into the various issues relevant to each population group. The results from the SCLD work are provided in their report: Learning Disabilities, Autism and Neurodivergence Bill consultation project: under-represented and under-served individuals.

The remainder of this report sets out the main findings from the written consultation exercise, but the results should be read alongside the SCLD report which provides additional information and highlights significant issues for key groups.

Response Rate and Profile

In total, 877 usable responses were received to the written consultation and included within the analysis. This included 609 (69%) responses from individuals or groups of individuals, and 268 (31%) organisational responses.

Individuals were asked to provide information in relation to their learning disability, autistic and/or neurodivergent status, as well as other demographic information. The table below outlines individual’s status or interest in relation to learning disability, autistic and/or neurodivergent status, while tables outlining demographic and geographic characteristics are included at Appendix A.

Base: 609 Individuals

Note: Multiple responses were given at this question

Organisations were asked to identify their type against the following list (with some organisations selecting more than one option):

• Private Sector: n=9, 3%;
• Public Sector: n=81, 30%;
• Third Sector: n=124, 46%;
• Disabled persons/neurodivergent-led/autistic-led organisation: n=32, 12%;
• Other: n=41, 15%; and
• Not answered: n=5; 2%.

Organisations were also assigned to sectors during the data cleaning phase as outlined in the table below.

* Sectors with less than 5 respondents were grouped under ‘other organisation’.

Organisations were also asked about their geographic location or area of coverage. The results are provided at Appendix A.

Removed Responses

In addition to the 877 usable responses, 28 responses were removed from the final analysis dataset at the data cleaning stage. Of these, 18 were removed because they were blank (i.e. no consultation questions had been answered), while eight represented duplicate responses from the same person/organisation. All such responses were checked to ensure no data were lost, with collated responses created in the dataset where necessary.

Methodology

All responses (across all response types) were collated into an Excel database for analysis. Questions containing quantitative data (i.e. where respondents selected a response from a list of options) were subject to descriptive statistical analysis. This involved generating frequencies and percentages to identify how many people selected each option. Qualitative data (i.e. questions which asked for text based answers) were read and iterative thematic analysis used to identify and extract the key issues and recurring themes both within and between questions/sections. Comparative analysis was also conducted to identify the level of consistency and any differences in feedback by respondent profile (i.e. between individuals from different demographic profiles, between individuals and organisations, and between organisational type and sector).

Caveats and Reporting Conventions

It should be noted that, of the 61 questions asked in the consultation document, only five were closed/quantitative questions (i.e. which required respondents to select options from a list), and therefore supported the presentation of results in the format of firm numbers and percentages. Most questions (n=56) asked for open free-text responses to allow respondents to provide the most important feedback to them. Therefore, it was not possible to consistently and accurately count the number of respondents who agreed or disagreed with the different proposals, or who talked about different issues. Such data does not support quantitative analysis approaches. In order to provide a sense of the scale of support for the different proposals and the prevalence of issues that were discussed, however, descriptive terms have been used throughout this report. Those used most often are outlined below and ranked in order from those representing the highest number of respondents through to the lowest numbers. However, it should be noted that the actual numbers of respondents represented would vary depending upon the size of the relevant sample or sub-sample being discussed (for example, ‘most respondents’ would represent a larger number when used in reference to all respondents who responded to the consultation compared to most of those who discussed a single topic or sub-topic):

• most - generally around or more than two thirds;
• many - more than half;
• some - less than most/many but more than several;
• several - less than some but more than a few;
• a few - a small number of respondents up to around 10; and
• a handful - the smallest number of respondents, up to around five.

Where feedback differed between respondent groups (i.e. between individuals and organisations, between types of individuals, and between organisational sectors) this is identified and outlined in the narrative of the report. However, it should be noted that, at each section/question, there tended to be mixed feedback both within and across groups, and across a wide range of both individuals and organisations of different types. Very few unique or sector-specific issues emerged within the findings. For example, third sector organisations who supported people with learning disabilities and neurodivergent people often gave very similar views to those living with these conditions, and the parents, families and carers of people with such conditions. Similarly, public sector organisations often adopted a broad approach to their responses, discussing both service delivery issues/concerns and the impact issues have on those who use their services, resulting in similar feedback to many individuals and third sector support/representative organisations. Public sector organisations were generally either supportive or neutral towards the proposals and keen to improve their services, but had concerns over implementation - in a very similar way to other respondents of different typologies. The low number of responses from some organisation types/sectors at certain sections/questions also made it difficult to identify common themes and issues at this level. Further, for individual responses, respondents often identified themselves within multiple groups (e.g. they were often a ‘neurodivergent person’, a ‘family member’ and ‘a carer’ for someone with learning disabilities/neurodivergent person, with some also indicating they were ‘responding on behalf of others’ and/or a ‘member of the public’). Therefore, it was difficult to identify clear patterns in the views of individual groups and differences between them. Similarly, some themes only emerged at the aggregate level, i.e. specific issues were discussed by small numbers of respondents within any one group, but added together across the total sample they became common enough to warrant inclusion within the report. As such, in most instances, the views set out in this report represent a wide range of respondent types rather than there being views dominant to or within respondent groups.

While there was no evidence of any typical campaign responses, it should be noted that there was evidence of some co-ordinated responses. Several individuals (often family/friends and carers) repeated some of the content from third sector support services at certain questions. In most instances, the content was not identical, included paraphrasing and/or additional information, or focused on only one part of the organisational response. As such, these were not considered to be campaign responses. In addition, a few individuals and organisations either referred to or expressed support for other organisations’ responses at individual questions/ sections, without repeating the content. All responses were included in the analysis with equal weighting.

More respondents generally answered the earlier questions and sections of the consultation (i.e. Parts 1 and 2), with considerably lower numbers providing feedback at most of the later sector specific and accountability sections (i.e. Parts 3 and 4). While between 50%-80% of all respondents generally answered at least one question at each of the sections covered in Parts 1 and 2, between half and one third of all respondents tended to respond to later sections. Reasons for this were not captured consistently, however, feedback suggested a combination of reasons, including:

• Respondents felt they had provided the relevant feedback at earlier sections, i.e. where sector specific proposals were consistent with those outlined at the overarching themes;
• Respondents had little or no experience in some of the sector specific issues and so felt unable to comment; and
• The overall length of the consultation meant that respondents focused their attention only on sections that had been most important to them, or that respondents had been unable to complete the consultation to the end as it was too time consuming.

Further, due to the size and scale of the consultation, it was noted by a few respondents that various groups had found it difficult to respond, or to respond to all sections/questions. A few organisations noted challenges in engaging with a broad range of service users/members in enough depth and detail to cover all sections/questions, so had chosen to focus on only those considered most important to them. They were concerned that valuable feedback could therefore be missing at other sections of the consultation. Several organisations providing services/support to children and young people also noted that the length of the consultation document and over simplification of the child friendly version meant that feedback from this group was largely lacking. It was suggested that further work was needed in this respect to ensure the views and experiences of children and young people could be captured.

Similarly, a few organisations raised concerns over the lack of consideration and focus on dyslexia in the consultation document, and lack of engagement with people with dyslexia and dyslexia support organisations. One organisation felt the current proposals would not help or support those with dyslexia and, therefore, this group should not be considered within scope for the Bill. Again, it was felt that more work was required here if there was a desire to include those with dyslexia within the scope of the Bill.

Concerns were also raised by respondents throughout the consultation responses that the main focus appeared to be on learning disabilities and autism, and therefore those with other neurodivergent conditions/presentations may not engage with the consultation. Others, however, noted that while autism was specifically named in the Bill’s title and included in detail at the outset of the consultation document, specific reference to this condition was less prevalent throughout the rest of the consultation. It was felt this needed to be consistent, with those in favour of naming autism preferring this to be specifically referenced and considered throughout, while others felt that naming one type of neurodivergent condition was unfair and either other conditions should also be named or autism should fall under the ‘neurodivergent’ heading in the same way as other conditions.

The report used the term ‘people with learning disabilities and neurodivergent people’ throughout in order to maintain consistency with the consultation document and as a shorthand way to refer to all groups and conditions. However, this should be interpreted as including people with learning disabilities, autistic people, and neurodivergent people, covering a wide range of neurodivergent conditions.

There were a few instances of respondents providing information at one question which was more relevant to other questions/sections. The report includes consideration of feedback at the most relevant question/section rather than focusing that feedback at the question/section within which it was provided.

In addition, some issues were raised across the consultation, with respondents highlighting similar preferences, challenges and concerns at many/most of the topics they were asked about. In order for the various sections to be read as stand-alone sections, this repetition has been retained to ensure that key feedback is not omitted from the per-section reporting.

It should also be noted that, while some respondent groups appeared to respond in low numbers (such as individuals with learning disabilities, children and young people, and those in older age groups), it was not possible to identify exactly which conditions or demographics all respondents were experienced in. For example, family and friends, carers, and those responding on behalf of someone else were not required to specify whether they were responding from a learning disability, autism or neurodivergent perspective or about a child, adult or older person. Although some respondents did provide information within their qualitative comments, this was not consistently disclosed. Similarly, many individuals who were neurodivergent were also family or friends of, or carers for, other autistic or neurodivergent people or other people with learning disabilities, but they were not asked and did not always specify the conditions or demographic groups involved. As such, broader experiences were discussed than the basic sample profile suggests, but this cannot be quantified.

In addition, several organisational responses had been developed following engagement with their client group, members or staff. This included focus groups and supported meetings/events and questionnaire surveys. In particular, several third sector organisations who support people with learning disabilities were informed by wider consultation with service users (including both those with lived experience and their families/carers), as were a few responses from organisation representing children and young people. However, not all organisations provided details about the scale of this engagement or the number of people who contributed, therefore it was not possible to quantify how many additional people provided feedback to the consultation overall. It indicates, however, that more people contributed than the respondent numbers noted above.

Despite being boosted by those in other categories or organisational responses that represented wider views, the inability to identify which conditions respondents had experience of means that certain cohorts may remain underrepresented within the results. For example, it is likely that feedback from or regarding people with learning disabilities remains underrepresented compared to autistic and neurodivergent people. Similarly, within the broad ‘labels’, it is not possible to identify individual conditions, for example, the types of individual learning disabilities are not known, while neurodivergent individuals covers autistic people and those with Attention Deficit Hyperactivity Disorder (ADHD), Foetal Alcohol Spectrum Disorder (FASD), and learning difficulties such as dyslexia, and dyscalculia, among others. Again, it is not known which conditions are represented and by how many respondents. Also, as noted above, the consultation results are largely lacking direct input and feedback from children and young people. These limitations should be borne in mind when interpreting the results.

This report focuses on the consultation responses and key themes and issues discussed by respondents, with the introductions at each section/question providing only very brief background information largely focused on outlining the various proposals put forward. For more detailed information on how and why the Scottish Government developed each of the proposals/consultation questions, and the evidence and arguments related to each, please refer to the original consultation documents.

Finally, the findings presented here reflect only the views of those who chose to respond to this consultation. It should be noted that respondents to a consultation are a self-selecting group. The findings should not, therefore, be considered as representative of the views of the wider population.