Learning Disabilities, Autism and Neurodivergence Bill: consultation analysis - executive summary

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; and

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 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 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 genrally 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: Transitions 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.