Learning Disabilities, Autism and Neurodivergence Bill: Consultation Analysis

Executive Summary

Introduction

The Scottish Government undertook a public consultation on the creation of a new Learning Disabilities, Autism and Neurodivergence (LDAN) Bill. Proposals covered a wide range of overarching themes and sector specific issues. The consultation ran for four months, from December 2023 to April 2024 and asked 61 questions. A total of 877 responses were analysed, including 609 responses from individuals/groups of individuals, and 268 organisations.

The main findings from the analysis are outlined below. Where specific proposals were set out in the consultation, these are presented below based on levels of support for each, i.e. the most popular proposals are outlined first through to the least popular. Where all proposals within a section received largely similar levels of support, their presentation reflects the order they were set out in the consultation. As most questions were open-ended questions, feedback was mainly qualitative in nature and accurate numbers and percentages cannot be provided to quantify all findings.

Feedback and views tended to be mixed within respondent groups, with views also echoed across a wide range of respondent types. As such, the findings largely reflect the views of multiple respondent typologies (across both individual typologies and organisational sectors).

Recurring Feedback

A number of common issues were identified and discussed by respondents, including:

• The need to include those with lived experience in designing, delivering and evaluating any changes, strategies and guidance, inclusive communication, training, and/or data collection, analysis and reporting;
• The need for staff training, both in learning disabilities, autism and neurodivergence, and around inclusive communication and other proposals/ measures;
• The need for accessible communication and information to be proactively provided and to go beyond Easy Read options;
• The need for advocacy support to be provided, to have consistency in advocacy workers, and for them to have appropriate learning disability and neurodivergence training;
• Concern over funding and resources/staffing, and how each of the proposals would be delivered given the currently stretched finances and staffing problems across public sector services;
• The need for robust accountability and real consequences for services not delivering on strategies or legal requirements;
• A need for clarity around what the LDAN Bill sought to achieve that was not (or should already be) covered by existing legislation, such as the Equality Act, the Human Rights Act, the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), and the United Nations Convention on the Rights of the Child (UNCRC), among others; and
• That legislative change may not be the most appropriate way to achieve the desired proposals or changes.

Across most of the sections covered by the consultation, large proportions of respondents supported all proposals that were outlined and/or felt that all proposals should be implemented in combination to develop the most robust and impactful solution.

Part 1: Reach and Definitions

Respondents were asked who should be eligible for support and what language/terminology should be used in the Bill. Overall, 735 respondents provided comments at this section and the most preferred option was to use and include ‘People who are Neurodivergent’/‘Neurodivergent People’ . Just over half of those who responded at this section preferred this option. This was considered to be accurate and clear; broad enough to be inclusive of all those targeted by the Bill; to not require a formal diagnosis; to reflect needs and a social model of disability; and was future-proofed to accommodate new and evolving conditions. Some respondents questioned whether the term ‘neurodivergent’ would be commonly understood or interpreted, and others were concerned that the broad nature of this option could result in an unmanageable increase in demand on services/for support.

Around a third of respondents indicated a preference for ‘including specific named conditions only’ and felt this would avoid any ambiguity or confusion over eligibility; that it would improve understanding of different conditions; facilitate condition-specific tailored support; and allow finite resources to be directed towards those in greatest need. In particular, those with Down’s Syndrome, and their family, friends, carers and support/representative organisations, supported this option. The main concerns were that this option risked excluding relevant conditions, and that it placed too much focus on formal diagnosis.

Very few respondents supported the option to use and include ‘People who are Neurodiverse’/‘Neurodiverse People’ , mainly because it was felt that the term ‘neurodiverse’ was inaccurate and too broad.

There was also discussion around the name of the Bill, and in particular, whether autism (among other conditions) should be named. Similarly, respondents debated which conditions would be protected by the Bill, with questions over whether this would include people with mental health conditions, acquired brain injuries, dementia, etc. Several respondents stressed that the Bill should not dilute the identities and needs of people with different conditions, and stressed that it was important for individuals to recognise themselves within the Bill.

Part 2: Overarching Themes

Section 1: Statutory Strategies

The consultation document set out six proposals in relation to the development of statutory strategies for neurodivergence and learning disabilities. Overall, 619 respondents provided feedback at this section with the main views being:

• to involve people with lived experience in the development of strategies - this was the most strongly supported individual proposal, seen as being key to developing relevant, meaningful and impactful strategies. Respondents argued there should be “Nothing about us, without us!” stressing the need for meaningful involvement and co-creation, and involving a wide group of people, covering all conditions, demographic backgrounds, and a range of geographic locations.
• development of a National Strategy - to provide a national standard and consistency across the country, thus avoiding the development of regional or sectoral variations. Only a small number of respondents explicitly disagreed with a national strategy, generally due to a perception that this would be too broad, end up “paying lip-service” to the issues, and would not be impactful.
• reviewing strategies - respondents generally felt that building in regular review periods was a positive step which would allow progress to be evaluated, and help to ensure that strategies remained relevant, up-to-date and reflected the latest research, understanding and developments.
• duty to review strategies and effectiveness - respondents expressed strong desires for robust accountability to be built into any strategy model on the basis that ineffective accountability mechanisms would lead to services simply paying lip-service to strategies, without any real and meaningful changes for service users. Several wanted requirements to be enshrined in law, with robust consequences for not fulfilling these.

The idea of local strategies for some public bodies attracted mixed views with those in support feeling that local strategies would be more effective, allowing local services to identify priority issues and areas of the greatest need, and to develop services which support people in their communities. Those who disagreed were mainly concerned about the risk of local variations and a postcode lottery in service provision, as well as a lack of accountability. Respondents tended to prefer local strategies in addition to, and to help deliver, a national strategy.

Similarly, the use of guidance received lower levels of support and attracted mixed views. While guidance was seen as helpful and supportive for local services, guidance alone may not be robust enough.

Respondents also wanted to see action and tangible change, not just strategies, and they stressed that funding, resources, suitable staffing, training and education were all required for services, providers and frontline staff to implement any new strategies.

Section 2: Mandatory Training

Overall, 674 respondents provided feedback and there was significant support to establish mandatory training for those working in health and social care and education (from early years to further and higher education). While training for staff in the justice sector was mentioned slightly less often (compared to health, social care and education), this was still very much supported.

Several respondents suggested that mandatory training requirements should be extended to all public services/public sector staff. Respondents also felt that training should not be restricted to public facing staff but should include those at management level and those performing administrative or corporate duties (and should be sector and role specific). Most respondents also advocated for mandatory training rather than voluntary/optional training as they felt this would increase uptake and ensure positive change.

There was also widespread agreement that the design and delivery of this training should involve people with lived experience from a wide range of backgrounds. While there was no overall consensus regarding what the focus and content of the training should be, respondents did stress that training should be neuro-affirming and should cover issues relevant to both children and young people and adults.

Several respondents felt that the development of a national training model would be helpful to ensure consistency across the country and between different public services. There were also calls for training to be accredited, monitored, and updated regularly. Further, it was suggested that refresher training or regularly updated training be offered.

The main concerns were that any training might be too generic, may exacerbate existing “training burnout” faced by public sector staff and may be unrealistic in terms of resources and impact on staff time/capacity.

Section 3: Inclusive Communications

In total, 593 respondents provided feedback at this section. The majority of respondents strongly agreed with proposals for improved access to alternative means of communication to allow more people to access services fully. The main perceived limitation was that this proposal placed the onus on people to proactively ask for alternatives, rather than these being made available as standard. Instead, it was suggested that a duty should be placed on public bodies to offer different formats, or for ‘communication passports’ to be used so that services are informed of preferences in advance.

The majority of respondents also supported better access to Easy Read information and it was felt that the LDAN Bill should include provisions for a broad duty not only to make Easy Read versions available on request, but also for there to be automatic provision in certain circumstances. Several respondents also stressed that Easy Read must not become the default position for achieving inclusive communications.

While attracting less feedback, there was also strong support for local authority strategies to consider and report how communication needs have been met on the basis that it would strengthen awareness, accountability and transparency of provision. It was also felt this would help to ensure consistency of provision.

Feedback on an Enforceable Accessible Information Standard for Scotland was also mainly positive with respondents perceiving this as a means of potentially ensuring compliance and action going forwards.

Section 4: Data

Overall, 492 respondents provided feedback at this section and there was widespread support for the collation and use of data generally, regardless of the mechanisms developed to achieve this. It was felt that access to robust and high quality data was essential to identify unmet need and the scale of any issues, for service and resource planning, to identify areas for improvement, and to monitor and assess outcomes. Similar proportions of respondents (roughly half of those who responded at this section) supported each of the proposals including:

• A Commission(er) Responsible for Data Collation - respondents were generally supportive of having one central organisation/department/person responsible for co-ordinating and overseeing all data-related issues and which could provide guidance and support to other public bodies; ensure consistency across services/the country; monitor and quality check returns or reporting; collate the data at a national level; ensure meaningful improvements are made as a result of the data; and ensure accountability. Those who disagreed with this proposal typically did so because they disagreed with the creation of a new Commission(er) per se.
• Duty to Collect Data and to Provide Returns - this was supported on the basis that there was an identified need and that imposing duties would support public bodies to prioritise this to provide higher quality and more meaningful data. This data would support the development of local services which were best tailored to meet local needs, while returns would allow national datasets to be collated and a national position to be established. Some respondents argued that all public bodies should be required to collect data and provide returns, not just “some”.
• Review the Deaths of People with Learning Disabilities - respondents generally supported this on the basis that it was important to review experiences and outcomes in order to learn lessons which could improve outcomes going forward and address the early mortality rates for people with learning disabilities. Some wanted these reviews to be expanded to include autistic people, with others suggesting this should include all neurodivergent people. Others were keen to ensure that more could be done to tackle issues while people were still alive rather than only reviewing situations after death.

Many respondents stressed the need for disaggregated and condition-specific data, as well as intersectional data, while many also raised concerns around the collection and possible use of data. Yet others had more practical concerns linked to consistency, data protection, informed consent, and data validity. It was also stressed that data collection needed to be meaningful and used to make real improvements.

Section 5: Independent Advocacy

Overall, 460 respondents commented at this section. Levels of support were similar for each of the proposals presented, with just over half of those who responded offering support to proposals to:

• Strengthen and Improve Access to Advocacy - current low levels of awareness and difficulties/barriers faced in trying to access advocacy were highlighted, including long waiting lists and varying provision across the country. As such, there was solid support for the use of and improved access to independent advocacy. There was also strong agreement with a duty for all public bodies to ensure that all people with learning disabilities and neurodivergent people are given information about advocacy and how to appoint their own independent advocate. It was also suggested there was a need for advocacy to support people during all challenging life stages and events, and this should not be restricted to limited sectors/services. However, respondents were also concerned about the sector’s ability to increase capacity and meet the needs of those covered by the LDAN Bill.
• Improve Understanding of Independent Advocacy - respondents were generally supportive of improving understanding and those who disagreed generally did so because they felt it was suggesting restricted access to advocacy. Respondents argued that the LDAN Bill should provide a legal right to free advocacy in all circumstances where it is needed and not just in specific cases for specific people.

Many respondents were keen to stress that any developments related to advocacy should involve and be informed by those with lived experience. Many also argued that the advocacy sector required more funding, resources, staffing (including specialist advocates), and training, both to meet current needs and to accommodate any increase in demand as a result of the proposals. Others called for regulation of the sector. Yet others set out more practical suggestions and recommendations around how advocacy services should operate.

Part 3: Specific Themes

Section 1: Health and Wellbeing

In total, 578 respondents provided feedback, with a little over half expressing support for all five proposals presented. Proposals related to Patient Passports, Annual Health Checks and Mandatory Training were the most popular individual proposals, with similar levels of support expressed for each.

Patient Passports: as one of the most popular proposals, it was felt that patient passports would be highly effective and supportive as long as health and social care staff were properly trained in the existence of, access to, and use of these. Further clarity was sought from respondents, however, around how these would work (including access, amendments, updating, etc.)

A Legal Duty to Provide Annual Health Checks: Supported by most respondents, however, more information on the practicalities and processes for this proposal were sought. Respondents were also supportive of extending Annual Health Checks to autistic people; however, extending the checks to those with other conditions received mixed feedback. There was also some support for extension to those aged under 16, and unpaid carers. The main concerns, however, were the delays and problems with the current roll out of Annual Health Checks for people with learning disabilities, and whether sufficient capacity and resourcing existed, particularly if checks were rolled out beyond people with learning disabilities.

Mandatory Training for the Health and Social Care Workforce: Again, most respondents supported mandatory training in this sector. Similar to the feedback around training at Part 2 above, respondents preferred condition-specific training, training that could be tailored to job roles and delivered as part of any required qualifications and whilst on the job, and that all staff should be trained.

Inclusive Communications and Accessibility: Again, respondents were largely in favour of the proposals related to inclusive communications and accessibility. Respondents again stressed that alternative communication needed to go beyond Easy Read and services needed to consider more than just written information, by, for example, offering alternative methods of arranging appointments and conducting consultations and responding to individual communication needs in verbal and in-person interactions. Again, it was felt that options needed to be proactively offered to individuals and/or provided as standard.

Neurodivergent and Learning Disabilities Strategies: This was the least supported proposal at this section. While strategies were generally supported as part of a package of measures, many respondents preferred a national strategy instead of (or to help guide and co-ordinate) local level strategies. Others felt that strategies would be ineffective, that local strategies would lead to variation, and that a single strategy for learning disabilities and neurodivergence was inappropriate.

One of the main issues discussed at this section was diagnosis and the current problems and delays in accessing assessments and support. Respondents sought clarity over whether a diagnosis would be required to be eligible for the above proposals. The absence of a dedicated section on diagnosis and pathways to diagnosis within the consultation was seen as a missed opportunity. Problems with public/private shared care arrangements related to diagnosis were also highlighted.

One of the other main concerns at this section was around current staffing, capacity, resourcing and funding of the NHS and healthcare systems. Some were worried that the proposals might raise expectations which could not be delivered, exacerbating the implementation gap, generating increased levels of unmet need/ demand, and potentially worsening outcomes for individuals.

Section 2: Mental Health and Capacity Law

The consultation set out two possible changes the LDAN Bill could make to mental health and capacity legislation in the longer term and subject to more investigation:

1. Specifically remove learning disability and autism from the scope of mental health and incapacity legislation; or

2. Change “mental disorder” to a term that is not stigmatising or offensive.

This section asked a closed question to allow respondents to indicate support for the approach. Of the 361 respondents who answered this, 80% (n=289) said they agreed with the approach. However, the comments provided indicated that there were different points of focus when expressing agreement (or disagreement). Some focused on removing learning disability and autism from mental health and incapacity legislation and/or changing the terminology, while others focused on the need to undertake further work in this area. Comments did not always address or consistently support all elements of the approach set out.

Many agreed with, or stressed the need to remove learning disability and autism from the current definition of mental illness or disorder. It was argued that clearer separation of mental health and learning disabilities and autism was needed to reflect the different conditions and needs, and to ensure individuals are referred into appropriate services.

Many also argued that the terminology and labels used needed to change. Terminology needed to be more carefully chosen, sensitive, and appropriate. A change in terminology was said to be required more generally, and not only for people with learning disabilities and autistic people, in order to tackle stigma and negative connotations related to mental health.

Many also felt it was sensible to delay any changes until additional work had been undertaken. In particular, it would be important to avoid any services being withdrawn to those already using them or in need, and to ensure there were no loss of rights or protections. Respondents did stress the need to avoid any lengthy delays in this area, however, with change being considered a priority.

It was suggested that more tailored mental health services, and general support services, were needed for people with learning disabilities and autistic people. It was felt that mental health treatments too often take a neurotypical approach which is unsuitable and ineffective for people with learning disabilities and autistic people. Mental health services were often considered to not be the right setting, but were generally the only route to obtaining support.

Section 3: Social Care

While 437 respondents provided feedback on social care proposals, much of this duplicated or closely mirrored the findings already presented above. That is, local strategies may facilitate consistency of high-quality provision across the country while ensuring flexibility for improving service user journeys at the local level, appropriately designed and delivered mandatory training would help to raise awareness and skill levels and improvements to making communication inclusive would maximise choice and independence.

A large number of respondents indicated that they agreed with all of the social care proposals, mainly on the basis that they would remove barriers to access that currently exist, would protect the interests of people with learning disabilities or neurodivergent people, and contribute to building a fairer and more inclusive society.

Again, the main concern was how the proposals would be funded and resourced, and around workforce capacity and time availability for training. A few also suggested that greater consideration was needed around children’s social care needs and carers’ needs.

Several respondents also discussed the need for a straightforward and accessible complaints process, with access to independent advocacy being made available when dealing with social care provision issues or complaints.

Section 4: Housing and Independent Living

Overall, 420 respondents provided feedback on five proposals, with nearly two thirds agreeing that all proposals had merit and could be impactful, as follows:

• Mandatory Training for Housing Professionals - was the most popular proposal, with views that specialist training regarding both physical and sensory needs would bring significant improvement to the system. There were also calls for training to be extended to other housing related services, for example, inspectors, trades people, letting agents, and landlords.
• Advice, Advocacy and Guidance - was supported on the basis that a more regulated/standardised approach in this area would increase accessibility and may also help with navigating other government departments and systems surrounding housing. The need for specialist support, and therefore specialist training for advocates, was regularly cited.
• Neurodivergence and Learning Disabilities Strategies - having a strategy and a requirement to evaluate progress against this would help to ensure that policies were inclusive and effective at addressing the specific housing needs of local people with learning disabilities and neurodivergent people.
• Inclusive communications - in line with comments elsewhere, it was stressed that alternative formats would be welcomed and should be offered as standard.
• Data - while achieving slightly lower levels of support, many respondents agreed with the need to collect, share and use data related to housing and housing needs as it would help the housing system evolve to meet specific needs.

Many respondents also discussed issues in the housing sector more generally and/or identified key areas that needed to be addressed. This included the lack of affordable/low cost and/or social housing, and a lack of suitable accommodation and supported accommodation for those with physical disabilities, learning disabilities and autistic people and other neurodivergent people.

Section 5: Complex Care - Coming Home

This section set out two proposals to tackle delayed discharge from hospital (due to a lack of appropriate community support) and inappropriate out-of-area placement (where people are living away from their home, communities and families when they did not choose to). Two closed questions were asked to identify preferences, and 272 respondents also provided further comments and feedback at this section.

Dynamic Support Registers: Most of those who responded to the closed question (93%, n=224) agreed that there should be a statutory duty upon the relevant public body or bodies (Integration Authority, Health Board, Local Authority) to hold a Dynamic Support Register (DSR). The qualitative comments showed that respondents felt that the data gathered via this were vital in order to identify the number of individuals affected by delayed discharge and out-of-area placements, levels of need, and any issues or patterns which need to be addressed (either locally or nationally). It was also felt this would support strategy and policy development, support early intervention and longer term planning, and to monitor actions and outcomes. Implementing this as a statutory duty would help to strengthen and prioritise the use and impact of the DSR, and provide greater accountability, both locally and nationally. It was suggested that the DSR should also be extended to autistic people and children. Again, concerns related to confidentiality, privacy, and data protection issues, while others felt that the DSR and data reporting would not be sufficient on its own to deliver meaningful change.

National Support Panel: Three options were set out for taking forward a National Support Panel with respondents asked to identify their preferred option at a closed question:

• Over half (59%, n=128) of those who responded, preferred Option B, creating a legislative panel to conduct peer reviews of local processes;
• Around one third (32%, n=68) supported Option A, creating a legislative panel conducting individual reviews within defined parameters; and
• 9% (n=19) preferred Option C, creating a non-legislative panel conducting peer reviews of local processes.

Qualitative comments highlighted that statutory powers were seen as desirable or necessary, to ensure the necessary participation of services, and because statutory powers were required to challenge statutory bodies and statutory decision making, i.e. the Panel needed to have “real teeth” and be able to hold services accountable.

Regardless of preferences, many suggested that the issues in this area were a result of system wide problems, and were therefore not solvable by creating a DSR and/or undertaking case or process reviews alone. Rather, significant investment was said to be required across a wide range of areas, as well as the development of integrated services, for real changes to be felt on the ground.

Section 6: Relationships

This section focused on people with learning disabilities and covered more general relationship issues as well as gender-based violence and children being removed from their parents care. Overall, 360 respondents provided feedback, with most agreeing with all five proposals presented and no clear preference for any one proposal over another.

It was felt that inclusive communication and accessible information should be provided for all parents where there was a risk of a child being removed from their care, not only for those covered by the Bill. It was also generally agreed that inclusive communication needed to be appropriate to all groups/needs, should be proactively provided, and must involve advocacy.

Advocacy in the context of relationships was seen as something that should not be restricted to ‘reactive’ support but was equally important as an early intervention and ‘proactive’ provision.

There was strong support for data collection and reporting with regards to gender-based violence affecting women with learning disabilities as well as for the collection of a broader range of data relating to exploitation and harm affecting people with learning disabilities and neurodivergent people. There were fewer comments regarding data collection on the number of parents with learning disabilities where their children have been removed from their care. Where discussed, however, respondents were broadly supportive. Again, respondents supported the use of condition specific and intersectional data, and stressed that data were only useful if acted upon.

In relation to national and local strategies, respondents indicated that there was scope for improvements linked to local authorities setting out how Relationship, Sexual Health and Parenthood (RSHP) education was provided, and the lack of education and support around developing relationships, especially romantic and sexual relationships. It was felt that more education and support was needed in an accessible format, supported by funding for delivery. Only very few respondents commented on Police Scotland setting out how people with learning disabilities are provided with specialist support to report crimes, including gender-based violence and abuse. Where people did give a view, however, this was broadly supportive. Similarly, there was little feedback on the Whole Family Approach and some indication that respondents were unclear what this meant.

In relation to accountability, views were split with some supportive of either a new or existing body having the power to investigate both ongoing and historic cases of child removal from parents with learning disabilities, based on their disability, and others not. The main feedback provided here was testimony of the negative experiences families had experienced due to a child being removed and perceptions that there was an urgent need to change or reform current practices.

Other comments suggested expanding the scope of this section to include autistic people and to consider the unique needs with respect to relationships that would be experienced by different individuals covered by the Bill. It was felt the consultation also needed to focus on relationships more generally, as well as bullying, loneliness and isolation, and not just on crisis situations (i.e. the removal of a child or gender-based violence).

Section 7: Access to Technology

The consultation document set out three proposals aimed at improving digital access for people with learning disabilities and neurodivergent people. Overall, 356 respondents provided comments at this section, with over half agreeing with all three proposals, including:

• Support to directly help people access and use technology - while this proposal attracted the highest levels of agreement, different interpretations of ‘support’ were noted. Some respondents assumed this would be financial support (such as increased funding, grants, subsidies or discounts for hardware), others discussed extended training to provide ongoing support related to digital skills, while a few suggested support could be specialist services to help people with learning disabilities and neurodivergent people to purchase, set up and maintain technology and equipment.
• Training for people with learning disabilities in digital skills and online safety - the need for individuals to be safe, particularly online was stressed, with people with learning disabilities and neurodivergent people perceived to be particularly vulnerable in this respect. Training in the use of social media was seen as particularly relevant as well as training for children and young people, families and carers. The main caveat, however, related to the current wording of the proposal, with many respondents calling for training to be extended to neurodivergent people.

Data on the number of people accessing and using technology was supported if used in combination with one or all other technology proposals rather than being supported as a standalone option.

Section 8: Employment

Given ongoing work and Scottish Government limitations on changing the law in the area of employment, the consultation did not propose any legislative changes. Instead, the consultation set out three proposals aimed at encouraging more inclusive approaches to employment. Overall, 449 respondents commented at this section, with a broad split between those who supported the ideas set out, those who supported anything new to enhance more opportunities and equality in the workplace, and those who felt that this section did not go far enough, i.e. that more robust plans or legislative changes were needed.

Challenging Recipients of Public Sector Grants: The dominant view was for more action to encourage employers to take proactive steps towards creating a more diverse and inclusive workplace. The promotion of Fair Work First (FWF) and the new proposals to challenge those not upholding the principles of FWF was welcomed on the basis that it would provide an incentive to employers to improve and enhance their practices. The need for more specialist training for line managers was also welcomed as it was felt that managers (and employers more generally) needed better understanding of the wide range of needs and adaptations required to make workplaces accessible and equitable. The proposals could be strengthened, it was felt, by including legal protections and more robust reporting and accountability measures (including measures to enforce compliance).

Training for Job Coaches: a proposal that received considerable support, to equip coaches with the necessary knowledge and skills to support people with learning disabilities and neurodivergent people to access and remain in the workplace. Respondents viewed that job coaches helped to give people with learning disabilities and neurodivergent people confidence in the workplace, as well as giving reciprocal confidence to employers.

Reviewing Language Within Employability Data: also strongly supported, respondents perceived that reviewing the language would help to both remove existing confusion and bias and facilitate data-driven policy making. Such a review would also ensure any outdated or inappropriate language was identified and removed.

While there was very limited explicit disagreement with the ideas set out with regards to employment, a large number of respondents suggested that they found this section disappointing in its scope and ambition.

Section 9: Social Security

The consultation set out three proposals focused on social security. Overall, 365 respondents provided feedback, with many supporting all three proposals.

There was consensus that much needed to change to make the Social Security system easier to navigate and inclusive communication strategies were welcomed as a means of helping to improve the service user experience. The main perceived benefits were an increase in accessibility, equality and accountability, as well as reducing missed appointments and inappropriate/inaccurate claims which were felt to occur because of communication barriers. Several respondents also commented that provisions for advocacy in the context of social security communications would be welcomed.

Echoing earlier findings, there was strong support for all public service staff, including Social Security staff, to receive mandatory training. Again, it was felt that training must cover a wide range of specific conditions, be co-designed and delivered by those with lived experience, and be delivered to all staff who may interact with communities of interest (rather than just ‘some’ staff).

Further disaggregation of data reporting was welcomed primarily on the basis that it would help to facilitate service delivery improvements, and assist workforce and financial planning. It was also felt that data would be helpful in highlighting the numbers of individuals who currently claim for support among those who are eligible (and the number who do not). Further, this would help in making some minority groups more visible in the statistics, it was felt.

There were a number of ‘other’ comments made in relation to social security. Most of these related to perceptions that the current system was not user friendly for people with learning disabilities and neurodivergent people (the focus instead being on physical disabilities). More support was also needed for those without official diagnoses. Several also commented on perceived problems linked to the process of applications/eligibility criteria for various benefits.

Section 10: Justice

This section focused on the adult justice system, with six proposals relevant to both the criminal and civil justice systems. Overall, 343 respondents provided feedback, with over half expressing support for all proposals. While mandatory training was the most popular proposal related to justice, all other proposals elicited similar levels of support. It was also felt that the proposals needed to apply across all justice organisations and partners and should not be restricted to the police, the Crown Office and Procurator Fiscal Service (COPFS), the Scottish Court and Tribunals Service (SCTS), and the Scottish Prison Service (SPS).

Mandatory Training: was considered vital for justice professionals and staff, and was seen as integral to both identification and communication, as well as supporting understanding and interpretation of situations and behaviours to avoid escalation.

Inclusive Communication: was considered vital throughout the justice system, for individuals and their families and carers. It was stressed that serious consequences were experienced when people in the justice system do not understand and cannot access information.

Data and Identification: was considered important to identify individuals with learning disabilities and neurodivergent people at the earliest opportunity and for this information to be shared throughout the system. This would then inform all ongoing contact/interactions and act as a trigger for implementing all other proposals set out in relation to justice. Discussion of data focused on the need for information on the prevalence and over-representation of people with learning disabilities and neurodivergent people in the justice system, to identify levels of unmet need, and for intersectional data to be collected.

Advocacy: was supported in the justice system, however, it was noted that provision was currently “patchy” and needed to be equally accessible across the country. It was also felt that advocacy was not always well understood within the justice sector with respondents supporting more training, awareness raising, and the provision of accessible information in this regard.

Strategies and Co-ordinated Approach: Respondents largely supported the creation of a justice strategy. It was felt that a national strategy would provide an overarching framework, ensuring a joined up system with equal/consistent provision across the country and that it would support the implementation of all the other proposals.

More mixed responses were provided in relation to Diversion from Prosecution (DfP). While some felt this would be successful in addressing offending behaviour for accused people with learning disabilities and neurodivergent people (as it could provide better support and education) others felt it might be considered as leniency and not delivering justice and/or could be exploited by neurotypical persons, particularly if a formal diagnosis was not required.

Many respondents discussed the use of the Mental Health Act in the justice sector to determine how a person with learning disabilities or an autistic person will be treated. Almost all respondents who discussed this issue raised concerns in relation to diverting accused persons away from court and into hospital settings. They argued that this was unjust and inappropriate, and needed to be changed.

In addition, it was felt that more preventative work was required to stop people with learning disabilities and neurodivergent people coming into contact with the justice system. Respondents also reported a reluctance or nervousness among people with learning disabilities and neurodivergent people about reporting incidents to the police due to fears that they would not be believed, or because they perceived the system to be too difficult/inaccessible.

Section 11: Restraint and Seclusion

The consultation document set out two areas where the LDAN Bill could focus action to tackle the misuse of restraint, seclusion or other restrictive practices:

• for children: the development of statutory guidance, and to support its implementation and evaluation; and
• for adults: the scoping of a programme of work to further reduce the use of coercion and restrictive practices, and monitoring progress over time.

Of those who provided a response to the closed question, around two thirds (64%, n=202) indicated they supported the approach set out in the consultation document. While 303 respondents also provided qualitative comments at this section, there appeared to be some confusion with regards to what was being asked.

There was strong support for guidance in relation to children and young people and suggestions that this should be comprehensive, broad in scope and appropriate to multiple professional groups. It should also clearly assert that restraint and seclusion should be used only as a ‘last resort’. Several also felt that more or additional guidance relating to the use of restraint and seclusion was also needed in relation to adults/adult institutions. Statutory guidance was particularly welcomed in relation to the grey area of 'last resort' as it was felt that the threshold for this can vary from one person to the next.

As with other areas of the consultation, there was agreement that education and training were required to ensure that all those working with children and adults were aware of appropriate best practice, both to help reduce the use of restraint and seclusion, and to protect staff. Some discussed the importance of de-escalation and felt that more could be done to raise awareness, invest in training and promote this as an alternative and preventative course of action.

There was some debate around Positive Behavioural Support (PBS) at this section, with some championing PBS for people with learning disabilities while others (mainly representing neurodivergent communities) viewed PBS in very negative terms.

A large proportion of respondents agreed that this was a complex area of work which they felt was deserving of its own legislation and that it should not be subsumed within the LDAN Bill. Whether included in the LDAN Bill or elsewhere, respondents felt this was an area where change was needed urgently and therefore this should be treated as a priority.

Section 12: Transport

Two specific proposals were presented in relation to transport. In total, 352 respondents commented at this section, with over half agreeing with them both.

The proposal that received most support was for mandatory training to be provided to all those who come into contact with the public, including (but not limited to) drivers, conductors, ticketing and booking staff. Training should also cover all transport sectors, including buses, trains, planes and ferries, with some respondents also suggesting that taxi and licensed private hire providers/drivers and the British Transport Police should be required to undertake mandatory training. Those who disagreed with this proposal felt that training would not solve the problems as the biggest issue was accessibility and suitability of the infrastructure.

Most respondents did not express a preference for either national or local strategies in relation to transport, instead supporting a combination of both. Where a national strategy was preferred it was felt this would provide a consistent quality of service and a joined up transport system. Others, however, were keen to ensure that local issues (e.g. remote rural and island issues) were recognised and addressed. The main issue raised, however, was the importance of accountability and enforcement to ensure strategies and improvements are delivered on the ground.

Section 13: Education

The consultation document set out three proposals specific to school based education. In total, 499 respondents commented at this section, and just over half indicated that they supported all three proposals.

Mandatory Training for Teachers, Practitioners and Other Educators: Respondents were particularly in favour of mandatory training within the education sector, with this being the most popular proposal at this section. It was felt that training needed to be incorporated into Initial Teacher Education (ITE) and Continued Professional Development (CPD) in a meaningful way, with refresher training provided. It was also felt that training should be included within the Standard for Headship qualification, as well as for Early Learning and Childcare (ELC) practitioners. Most felt that optional training would be far less effective as it could be taken once or avoided entirely, although some education services and local authorities felt CPD should remain voluntary with teachers identifying their own learning needs. In addition to better equipping teachers to deliver lessons that engage and support all pupils with learning disabilities and neurodivergent pupils, many argued that training also needed to support teachers and other educators to recognise and identify potential pupils with learning disabilities and neurodivergent pupils. A few did, however, question how realistic it would be to provide mandatory training across the entire education sector due to the number of different bodies involved, the financial investment that would be required, and capacity to release teachers from classroom duties to undertake training.

Data: Proposals related to data were the next most popular. Disaggregated data were considered important for measuring outcomes and improvements, and for identifying needs, planning services, and identifying challenges, service gaps, or inequalities across schools/ areas. It was felt that any data must be condition specific, intersectional, and record the use and support for part-time timetables. Data were also said to be required for other issues such as the attainment gap, absence and exclusions, the use of restraint, levels of need/unmet need, destinations after school, etc. The need for consistency in data recording between settings was stressed, requiring the provision of clear guidance and parameters.

Strategies and reporting requirements: Respondents felt that this proposal would: make schools and local authorities more aware of needs and make them more accountable; ensure local authorities are aware of how children and young people with learning disabilities and neurodivergent children and young people are being supported; help support future planning, and direct additional funding and resources into the area. Others, however, felt that reporting alone would not provide accountability, and were concerned that this could become more of a tick-box exercise which has little impact on individuals. A series of caveats were also raised around the proposed planning and reporting requirement, including diagnosis issues presenting a significant barrier to accurate reporting; that reporting should take account of children not attending school; and the proposals would require training, and increased capacity, funding and resources, as well as support for pupils with learning disabilities and neurodivergent pupils.

Many used this section to highlight challenges, problems and shortcomings in the current education and school system for children and young people with learning disabilities and neurodivergent children and young people. It was generally felt that the proposals did not go far enough to tackle the fundamental problems, and that more needed to be done to address the implementation gap.

Section 14: Transition to Adulthood

The consultation document did not set out any specific proposals related to transition to adulthood. Rather, it flagged that many of the proposals at other sections would be relevant, particularly in relation to inclusive communications, mandatory training, independent advocacy, and statutory strategies. Four specific aims were, however, outlined in relation to transitions data. Overall, 392 respondents commented at this section.

In many cases, where respondents indicated they agreed with the proposals, it was difficult to identify which proposals they agreed with and why, or if they simply agreed with some of the background information and rationale that had been set out. Several respondents felt that the proposals were “vague” and unactionable, with others indicating that they did not understand what was being proposed. Others perceived that the consultation did not set out any proposals specific to transitions or suggested inaction in this area. The key views were that:

• Change was Needed - including more joined up services, more partnership working and a multi-agency approach to transitions, as well as greater and more proactive support. Respondents described a “cliff edge” where support and activities put in place via child and young people’s services stopped when they reached adulthood with nothing to replace them. It was noted that provisions were inconsistent across Scotland with regards to age thresholds and service eligibility.
• Timescales and Pathways - more time/longer timescales for transition planning was needed, with respondents suggesting that current transition planning and consideration of options/choices begins too late and should be more phased with a clearer and wider range of pathways available for school leavers.
• Supporting Transitions - individuals and their families/carers need to be proactively provided with more information and signposting about transition processes and support, available adult services and how to access them, and their rights and how to ensure these are upheld.

Mixed feedback was provided on whether more legislation was needed in relation to transitions. Some felt that more robust provisions were needed and that the LDAN Bill would have been a good opportunity for this. Others, however, felt that more legislation was not necessary. Again, many respondents felt that the proposals in this section did not go far enough and were not sufficient on their own to tackle the inadequacies in the system and significantly improve transitions.

Part 4: Accountability

The final part of the consultation set out how the LDAN Bill provides an opportunity to ensure that there is improved accountability for the delivery of individual’s rights and presented five options for how this might be achieved. A closed question was used to ask respondents to indicate their preferences:

• 65% (n=291) supported Option 1: Create a new Commission(er);
• 35% (n=159) supported Option 2: Provide better resourcing and additional duties for an existing body;
• 45% (n=202) supported Option 3: Create Champions and Advocates within Scottish Public Bodies;
• 49% (n=220) supported Option 4: Provide better resourcing for existing Disabled Persons Organisations (DPOs); and
• 45% (n=203) supported Option 5: Support good practice through standards, guidance and practical tools and investing in co-production.

Most indicated that they would like to see a combination of different options, but there was no consensus over which combination of options this should be. When considered as standalone options, respondents preferred Option 1 over Option 2. Also, while Options 3, 4 and 5 were supported in principle, respondents typically felt these needed to be implemented in combination with either Option 1 or 2 as they were unclear how these would deliver accountability on their own. In addition to the closed question, 421 respondents provided qualitative comments at this section.

Many respondents supported the creation of a new Commission(er) and felt that this was the best way of ensuring that historical failings in supporting the needs of people with learning disabilities and neurodivergent people were addressed (especially if working alongside champions in different sectors). A new Commission(er) was supported on the basis that it would be in a position of authority but would be impartial and independent of the Government; it would be an easily identifiable port of call for any issues; and it could promote good practice and facilitate improvements. It was stressed, however, that it must be permitted to conduct formal investigations and have enforcement powers; have ‘duties’ in the legislation rather than just ‘powers’; be responsible for collating data on outcomes and have a role in promoting and securing rights. Respondents also wanted the Commission(er) to have the necessary expertise, knowledge and capacity, and to work closely with those with lived experience. The main concern was that the creation of another Commission(er) could add more bureaucracy and cost to an already substantial Commission(er) landscape, with risks of overlap/duplication of efforts. Others were concerned about the cost and time required to set up a new Commission(er). The consultation did not ask respondents to indicate a preference for either a Commission or Commissioner, and there was no clear consensus in this regard within the responses.

Respondents felt that, regardless of which accountability mechanism was used, it must be taken forward with, and be representative of, people with diverse lived experience (including their families and carers, as well as children and young people). Respondents also commented that it must be more robust and better enforced than existing measures. Indeed, there was a strong sense that none of the proposed options may make a difference unless there was first a better understanding of why current mechanisms were not working. Respondents also stressed that there was a need for a clear plan with regards to how the Government would monitor and evaluate the success of proposals presented in the Bill. Finally, it was stressed that any ‘new’ accountability measures or strengthening of existing measures must be adequately advertised.

Next Steps

The consultation attracted a large number of responses from a very broad range of respondents, and the feedback given was considerable. The findings from the consultation will be used by the Scottish Government and their partners to refine and finalise the draft LDAN Bill, ensuring that the voices of those who contributed are reflected in any changes made.