Learning Disabilities, Autism and Neurodivergence (LDAN) BILL consultation response SASW
Consultation Questions
The questions in this document refer to information contained in our main consultation document here. There are also alternative formats you can access.
You need only answer the sections most relevant to you and all answers in the Bill proposal sections should be provided voluntarily. The questions are mostly consistent throughout the sections and space is provided for your response – if you need more space, additional pages can be added.
Part 1: Reach and definitions: who should the Learning Disabilities, Autism and Neurodivergence (LDAN) Bill include?
Who should the Bill include
A Bill has to set out who it will apply to and in what circumstances. This means our Bill has to say which groups of people it will apply to.
This is important because it sets out who can benefit from the Bill’s provisions, and who can rely upon it to uphold their rights or seek redress for their rights being breached.
If the people included are not properly defined, the legislation won’t be able to fully benefit the people it is intended for.
What can the LDAN Bill do?
There are 3 different potential approaches for this Bill.
Proposal 1: ‘People who are Neurodiverse’/’Neurodiverse People’
There are differing schools of thought in academic literature about what ‘neurodiversity’, and ‘neurodiverse’ means.
We understand that it is, however, commonly accepted that ‘neurodiversity’ encompasses all of humanity, and does not mean ‘neurological disability’ or ‘otherness’. ‘Neurodiversity’ describes a population, not individuals. A person cannot, therefore, be individually ‘neurodiverse’.
If we use the term neurodiverse in the Bill then it may be too broad. It will cover the whole population including people who are not neurodivergent - ‘neurotypical’ people - so we don’t think it is a good description to use in the Bill.
Proposal 2: ‘People who are Neurodivergent’/’Neurodivergent People’
We understand that it is commonly accepted that ‘neurodivergent’ means having a mind that functions in different ways to the minds of the majority of people in society.
‘Neurodivergent’ and ‘neurodivergence’ are very broad terms that would allow us to capture a wide range of people within the Bill, including people with learning disabilities, people with learning difficulties such as people with dyslexia, dyspraxia and dyscalculia, autistic people and people with Down’s Syndrome, Attention Deficit Hyperactive Disorder (ADHD), and Fetal Alcohol Spectrum Disorder (FASD). However, the term can also apply to people with acquired brain injuries.
We could also consider how to put some further definitions in the Bill around how we define “neurodivergent” to ensure that it does not become too wide.
Such an approach could allow us to define neurodivergence by reference to common barriers or behaviours faced or expressed by various groups. This would be similar to the approach taken by the Education (Additional Support for Learning) (Scotland) Act 2004, where a child or young person does not require a diagnosis to be able to receive support.
Proposal 3: including specific conditions only in the Bill
We could take an approach that specifically names and defines populations of people in the Bill. This would increase the visibility of these groups and more clearly state who the Bill applies to for the benefit of those people, as well as for practitioners.
For example, we could choose to apply the Bill only to people with a learning disability and autism; add ADHD and FASD; or any combination of neurodivergent conditions. However, if a condition was not specifically listed and defined, then that population would be excluded.
The Bill could include a power that allows future changes to the Bill’s definitions to be made by Regulations, as our understanding of neurodivergence and different conditions evolve. This means that, if certain conditions were left out of the initial Bill, they could potentially be added later, after the Bill has become law.
There is also a question about whether Down’s Syndrome should be specified separately from broader learning disabilities – we understand that some people will support this and some will not.
What Do You Think?
Which of these proposals do you agree with (if any), please tell us why?
See below
Which of these proposals do you not agree with (if any), please tell us why?
The Scottish Association of Social Work (SASW) is part of the British Association of Social Workers, the largest professional body for social workers in the UK. BASW UK has 21,000 members employed in frontline, management, academic and research positions in all care settings. There are over 10,000 registered social workers in Scotland around 1,500 of whom are SASW members. This includes people working across health and social care, education, children and families, justice services in both the public and independent sectors. There is also a growing number of independent practitioners who are self-employed.
SASW’s key aims are:
• Improved professional support, recognition and rights at work for social workers,
• Better social work for the benefit of people who need our services, and
• A fairer society
The difficulties with proposals 1 and 2 is that they differentiate particular words in a way that many individuals and professionals would not recognise. It may not be possible to agree a common language to identify all people with additional support needs in a way that feels consistent with their sense of identity. The language used in the bill must not inadvertently present barriers for people who need support to fulfil their potential and live meaningful lives.
Is there anything else that we should consider in relation to this topic?
Including specific descriptors for identity risks excluding those who do not use those descriptors, language to identify people with autism, neurodiversity and learning difficulties evolves over time as our understanding develops and as people in these communities self identify. The language within any legislation must be flexible enough to encompass all those who might fall within its remit and have scope to extend or amend language in future if it is to remain current and relevant to the populations is seeks to include.
- Part 2: Overarching Themes
The Scottish Government has previously produced national strategies on learning disability and separately on autism. Following the COVID pandemic, a joint plan produced in partnership with Convention of Scottish Local Authorities (COSLA) was published covering both learning disabilities and autism – the Towards Transformation Plan. The Scottish Government continues to work to this plan pending decisions on the shape and content of the Learning Disabilities, Autism and Neurodivergence (LDAN) Bill.
Scottish Government strategies are scrutinised by the Scottish Parliament and stakeholders. There is currently no formal or legislative requirement for either national or local strategies specifically for neurodivergent conditions or learning disabilities.
What can the LDAN Bill do?
The Scottish Government is proposing to take a broad approach covering neurodivergence and learning disabilities.
We recognise that approaches to previous strategies and polices have been single condition focussed even although many people have more than one condition. Although there will always be a need for some distinct policies according to certain conditions, we think a wider neurodivergent approach is more appropriate in terms of recognising the whole person rather than single conditions and recognising the crossover in the way services and supports are delivered. This includes the workforce delivering them.
There should also be a clear recognition that neurodivergent people and people with learning disabilities should be treated equally whatever condition or combination of conditions they have.
Proposal 1: Introduce a requirement for a national strategy on neurodivergence and learning disabilities to be produced by the Scottish Government.
Proposal 2: Introduce a requirement for local strategies to be produced by some public bodies, for example health and social care partnerships, local authorities, and other public bodies.
Proposal 3: Introduce guidance that could cover a range of topics to be included in national and local strategies.
Proposal 4: Ensure that there is a requirement to review strategies, for example every 5 years for example.
Proposal 5: Ensure that people with lived experience have to be involved in the development of the strategies.
Proposal 6: Consider whether any new accountability mechanism introduced by the Bill should have a duty to review national and/or local strategies and their effectiveness.
What Do You Think?
Which of these proposals do you agree with (if any), please tell us why?
See below
Which of these proposals do you not agree with (if any), please tell us why?
See below
Is there anything else that we should consider in relation to strategies?
Having specific strategies for people with learning difficulties and people with autism runs the risk of complicating the landscape of care and support for people who need it. Strategies themselves do not result in effective change unless these strategies are accompanied by sufficient resource to meet need and a wider social understanding of neurological difference and the way in which this can impact people across a range of capacities and capabilities. Strategies themselves do not increase peoples’ rights, nor do they ensure those rights are met and respected.
Local Authorities have a duty to prepare health and social care plans in relation to Adult Services and Child Protection/Childrens Services. Rather than legislating for further strategic plans we would urge the government to consider whether it is possible to achieve the stated aims of this section by providing guidance to strategic support staff in HSCPs and local authorities that, e.g. neurodivergent people should be explicitly referenced in the HSCP (Health and Social Care Partnership) strategic plan and integrated Children's Services Plan.
One of the key themes we have heard through our scoping exercise, and from stakeholders and the Lived Experience Advisory Panel (LEAP), is that that there needs to be greater awareness, training on, and understanding of neurodivergent people and people with learning disabilities. In particular, there is a need for this when people are trying to access help, support and services and to exercise their rights.
Whilst there can be training options available to public sector professionals to help them to better understand and communicate with neurodivergent people and people with learning disabilities, undertaking this training is voluntary and is not necessarily developed or delivered by people with lived experience. This means that people who work in public services, such as in the National Health Service (NHS) or social care, the police and prisons, can choose to do training or not, if it is available to them. It is not consistent across different public services or delivered to a standard. It can vary in quality and effectiveness.
What can the Learning Disabilities, Autism and Neurodivergence (LDAN)Bill do?
Having access to staff in public services who are informed and able to understand and communicate with people effectively can make a significant difference:
- People are more likely to engage with services
- People are more likely to seek help and support at an early stage meaning crisis can potentially be avoided
- Staff will feel more confident in meeting needs successfully
- Early engagement with health and social care supports will allow a greater focus on prevention and reduce health inequalities
Proposal 1: Mandatory Training for Public Services
We want to consider how we make training mandatory for public facing staff in some public services.
In the first instance, we would like to consider implementing the same approach as in England, by placing a mandatory training requirement on health and social care staff.
However, we could also consider extending this to other public sector areas. For example, the justice system, which could include the police and prison staff, and in the education system for teachers and other educators.
Although the approach in England relates specifically to training on autism and learning disabilities, we could consider a broader approach for training to be inclusive of neurodivergence more generally, as well as learning disabilities.
As part of our approach to mandatory training we want to think about how people with lived experience should be involved.
What Do You Think?
Do you agree with this proposal, please tell us why?
Social workers are uniquely placed to promote the rights of vulnerable people, including neurodivergent people and people with learning disabilities. Mandatory training would ensure that social workers have an awareness of and are able to better consider the complexities of the people they work with, supporting communication, understanding and individual need. Training should include people with lived experience in design and delivery. It should be recognised that providing mandatory training which encapsulates the complexities and individual needs of people with learning difficulties and neurodivergent people is likely to be resource intensive.
While we consider mandatory training one element in improving the lives and experiences of neurodivergent people and people with learning disabilities, social workers also need the time and capacity to establish constructive professional relationships. Relationship based practice gives the best opportunity to understand the particular needs of an individual, to promote their rights and understand the challenges they face.
Having training programmes for the public sector is also one means by which social attitudes to and understanding of difference can be improved across Scotland given the high proportion of people who work in the public sector.
Do you not agree with this proposal, please tell us why?
Is there anything else that we should consider in relation to mandatory training?
For a very pressed public sector, consideration needs to be given to having time and capacity to attend training while also undertaking day to day work. Implementation science evidences that training alone is insufficient to bring about change, there needs to be a range of workplace supports, leadership, systems and data support. Mandatory training runs the risk of becoming a tick box exercise within time pressed services, rather than being the active, engaged process needed to bring about changes in the way professionals understand, think about and respond to difference.
Section 3: Inclusive Communications
Inclusive communication means sharing and receiving information in a way that everybody can understand. For public authorities and people who provide support and services, it means making sure that they recognise that people understand and express themselves in different ways. For people who access support systems and services, it means getting information and expressing themselves in ways that meet their needs. Inclusive communication relates to all modes of communication: written information, online information, telephone, face to face.
Neurodivergent people and people with learning disabilities with communication support needs can face widespread exclusion and disadvantage. The use of inclusive communication is vital in order to allow people to know and exercise their rights, to live independently and to participate fully in life.
What can the Learning Disabilities, Autism and Neurodivergence (LDAN) Bill do?
The Bill could assist by providing a stronger focus on how public authorities’ duties around inclusive communication can best be met for neurodivergent people and people with learning disabilities – potentially providing more specificity than the Human Rights Bill (recently consulted upon) and existing public sector duties. The provision of more accessible information links also to our proposals on training. Inclusive communication would inherently be a significant component of that training.
Although we focus on public bodies for the Bill, it will also be important to think about how we extend and promote inclusive communications to other organisations in the future. Some or all of the following could be explored further for possible inclusion in the Bill.
Proposal 1: Alternative means of communication
Provide for neurodivergent people and people with learning disabilities to request access to alternative means of communication where the offered means of communication will not work for them. This could mean being able to request an online or telephone meeting rather than face to face, or a telephone call instead of a letter, or other forms of communication.
It might also be appropriate for neurodivergent people, and people with learning disabilities, to be able to request access to a practitioner with specialist training in certain circumstances. For example, when accessing health care or when navigating the criminal justice system.
Proposal 2: Easy-read
Better access to easy-read versions of all public facing communications and documents made by public authorities. This could include a broad duty to make them available on request and an automatic duty to provide them in certain circumstances, such as:
- a duty on National Health Service (NHS) Boards and Health & Social Care Partnerships (HSCPs) to require appointment letters to automatically be produced in easy read; and
- a duty on the Scottish Police Service, the Scottish Courts and Tribunal Service and the Scottish Prison Service to automatically provide information to people in certain circumstances including when accused or convicted of a crime in an accessible way, including standard bail conditions.
There will be other circumstances too where an automatic duty would be important.
Proposal 3: Neurodivergent and learning disabilities strategies
Local and national strategies are discussed more fully in a previous section. If the Bill were to require local strategies to be produced, this could apply to local authorities, NHS Boards and integration authorities, and potentially other public bodies if appropriate. The Bill could provide the Scottish Government with power to direct what these strategies should cover and this could include how communication needs are met.
Proposal 4: An enforceable Accessible Information Standard for Scotland
Whilst the Accessible Information Standard made under section 250 of the 2012 Act is not enforceable in Scotland, guidance sets out that it should be considered best practice in NHS Scotland organisations. The Bill could provide for an Accessible Information Standard to be enforceable in Scotland with requirements for its implementation and impact to be reviewed.
What Do You Think?
Which of these proposals do you agree with (if any), please tell us why?
See below
Which of these proposals do you not agree with (if any), please tell us why?
See below
Is there anything else that we should consider in relation to accessible information?
Communication and the capacity to make your needs known is a basic human right and the starting point for any professional support or intervention. Communication is a two way process whereby both parties can develop a relationship based on mutual respect and shared understanding. The communication methods cited in these proposals are very limited and do not reflect the many varied ways in which people communicate, including non-verbal methods of communication. Considerable time and resource will be required to support professionals to develop the skills and knowledge needed to support communication. Contact preferences such as “easy read” formats are straightforward to achieve and should be standard offers when providing information however, these formats are not accessible to everyone and only ensure communication from the professional to the person, they do support communication from the individual to the professional.
Professionals should have access to a range of communication methods and aides, with sufficient time and resource to develop relationships which in turn aid positive communication.
- Section 4: Data
Better data collection and reporting will enable better understanding of the requirements of people with learning disabilities and neurodivergent people throughout their life and build evidence on whether they are able to realise their rights.
It is important that the population of neurodivergent people and people with learning disabilities are visible in topic specific data collections where these are of particular interest, for example, employment data.
What can the Learning Disabilities, Autism and Neurodivergence (LDAN) Bill do?
In order to achieve the desired outcomes, organisations often need to link different pieces of data to paint a full picture. However, a barrier to being able to do this is that there needs to be a legal basis for some types of data to be collected, including personal data. The Bill could provide an opportunity for data to be collected in particular circumstances if that would be beneficial to neurodivergent people and people with learning disabilities.
Proposal 1: Developing a commission(er) with responsibility for data collation
Within the section entitled “Accountability”, there is discussion on the possible creation of a new Commission or Commissioner, or adding to the remit and powers of an existing body. If a Commission or Commissioner (or other relevant accountability model) is created, their functions could include responsibilities for collecting and analysing data on neurodivergent people, and people with learning disabilities.
Additionally a body could have powers to make recommendations to other organisations collecting data to disaggregate their data to the level of neurodivergent people, and people with learning disabilities.
There are some other options that would need to be developed further, however, to help us with this, we would like to know your views on the following:
Proposal 2: Placing duties on some relevant public bodies to collect data on neurodivergent people and people with learning disabilities where this would be helpful for better understanding of the needs of these groups, their experiences, informing service design and improvement, and to allow for evaluation of measures to improve outcomes for these groups.
Proposal 3: Placing duties on some relevant public bodies to provide returns to the Scottish Government regarding local data on people with learning disabilities and neurodivergent people, where this would be helpful for better understanding of the needs of these groups, their experiences, informing service design and improvement, and to allow for evaluation of measures to improve outcomes for these groups.
Proposal 4: Consideration of the development of a Scottish version of the Learning Disability Mortality Review (LeDeR) programme. This helps reduce inequalities in care for people with a learning disability. It could reduce the number of people dying sooner than they should.
What Do You Think?
Which of these proposals do you agree with (if any), please tell us why?
See below
Which of these proposals do you not agree with (if any), please tell us why?
See below
Is there anything else that we should consider in relation to data?
We acknowledge the need for data in order to track outcomes for people and to identify gaps in provision. There are already standard data sets for child protection and adult support and protection, and within health, education and social care, it would a be better use of resources to expand existing data collection to include information regarding learning disabilities and autism without duplication of work and effort. Data collection should have clear, consistent parameters when identifying people with disabilities and autism (or indeed any additional support needs) eg on the basis of diagnosis, recognition of need or self identification.
Independent advocacy can play a key role in helping people to secure their rights. An independent advocate will help someone’s voice be heard. This can help people to make choices about their services and supports. There are different kinds of independent advocacy and this includes collective advocacy when people are supported to come together to talk about their experiences and challenge discrimination.
What can the Learning Disabilities, Autism and Neurodivergence (LDAN) Bill do?
We are looking at how we can improve rights through the availability of independent advocacy through our policies on:
- The creation of a National Care Service (NCS) through the National Care Service (Scotland) Bill (the “NCS Bill”); and,
- Our response to the Scottish Mental Health Law Review.
- work with the Scottish Independent Advocacy Alliance, other organisations and people with lived experience to help identify how best to strengthen rights and access to provision; and,
Proposal 1: Strengthen and improve access to existing advocacy provisions
We want to take time to make sure that there is more consistency around our approach to advocacy and we want to involve people with lived experience in helping us to design this. To do this, we will:
- develop a consistent definition of ‘Independent Advocacy’.
This work will take place across the Scottish Government and we will ensure that it includes specific consideration of the rights of neurodivergent people and people with learning disabilities. How we legislate for advocacy for these groups will depend on the proposed changes in the NCS Bill and to mental health legislation, including whether people with a learning disability or autistic people remain covered by provisions within the 2003 Act.
This means that we are not currently proposing a broad right in this Bill to independent advocacy for neurodivergent people and people with learning disabilities. However, we think there are some other things we could explore in the LDAN Bill especially since the right to advocacy under the Mental Health Act only applies the duty to the State Hospital, Health Boards and local authorities (although Health and Social Care Partnerships may in some cases be carrying out this duty) and only applies to a subset of neurodivergent people (as people with a ”mental disorder” under the legislation includes people with learning disabilities and autistic people).
Therefore, we could:
- Provide a power in the Bill that allows us to make regulations around the provision of independent advocacy for neurodivergent people and people with learning disabilities whilst further discussions take place about how to improve this.
- Include a provision in the Bill that places a duty on all public bodies to ensure that all neurodivergent people and people with learning disabilities are given information about advocacy and how to appoint their own independent advocate to support them.
Proposal 2: Improve our Understanding of Independent Advocacy
We will also in the meantime identify and gather evidence on specific circumstances where a right to independent advocacy could make a difference.
For example, we know that there are some circumstances where additional support could help, as follows:
- Evidence research published by the Scottish Commission for Learning Disabilities suggests that where women with a learning disability have been subject to gender-based violence they struggle to access support due to discrimination and stereotyping. There can be significant barriers to accessing support and to effective support when people are able to come forward. Professionals may not recognise that someone has learning disabilities and if they do they may not have any relevant training in how to support them.
- The Equalities and Human Rights Commission, in its Inquiry report into housing for disabled people in 2018, recommended that local authorities should ensure that people with learning disabilities have access to good-quality, accessible advice and advocacy when discussing housing options and to help them navigate complex systems.
We could consider whether the Bill could provide some specific legal rights to free independent advocacy in these circumstances, as well as others.
What Do You Think?
Which of these proposals do you agree with (if any), please tell us why?
See below
Which of these proposals do you not agree with (if any), please tell us why?
See below
Is there anything else that we should consider in relation to independent advocacy?
All professionals have a duty to consider the views and wishes of the people they work with and to advocate in their best interests. Social workers have a particular ethical responsibility to promote the rights and interests of people who need support. Where social workers are appropriately resourced to build strong, constructive relationships with the people they support, they are able to balance rights, responsibilities and risk which is a key feature of the social work role. Advocacy should be available in circumstances where there is a conflict of rights (eg the right to safety and the right to autonomy) to ensure people who need support have the opportunity to express their views and have those heard. Ensuring a reliable, well trained advocacy resource in Scotland will take time and funding, any proposal for strengthening advocacy provision must therefore be accompanied by a commitment to resourcing services adequately.
This part of the consultation sets out specific themes that arose during our scoping work, and through our work with the LEAP.
Neurodivergent people and people with learning disabilities experience poorer health outcomes than the general population, which can be preventable, resulting in below average life expectancies and death caused by preventable conditions.
It is important that people with learning disabilities and neurodivergent people have good health outcomes in order to access their rights and be able to participate fully in life. Poor health creates an additional barrier for neurodivergent people and people with learning disabilities, potentially limiting or impacting their ability to be active in their communities, access employment or maintain relationships.
What can the Learning Disabilities, Autism and Neurodivergence (LDAN) Bill do?
The Bill can help to create the right conditions for people with learning disabilities and neurodivergent people to access supports and services successfully when they need them, helping to prevent illness and improving overall health and wellbeing.
Proposal 1: Neurodivergent and Learning Disabilities Strategies
We are proposing legislative requirements for national and local strategies in future and we could set out what the strategies must include. For example, in relation to health care, we could ask Health Boards, Integration Authorities and Local Authorities to set out in their local strategies how their workforce planning and service planning has taken into account the needs of the neurodivergent and learning disability populations.
Proposal 2: Mandatory training for the health and social care workforce
We propose to legislate for a similar training requirement for health and social care in Scotland in the LDAN Bill. However, we could take a wider approach so that the mandatory training focusses on learning disabilities and neurodivergence - not just learning disabilities and autism.
Proposal 3: Inclusive communications and Accessibility
We have set out proposals on inclusive communications and this will impact on healthcare. We propose to legislate for neurodivergent people and people with learning disabilities to be able to request access to alternative means of communication where the offered means of communication is not suitable work for them. We also propose better access to easy-read versions of public facing communications and documents. This could include a broad duty to make them available on request as well as an automatic duty to provide them in certain circumstances, such as a duty on National Health Service (NHS) Boards and Health and Social Care Partnerships (HSCPs) to require appointment letters to automatically be produced in easy read.
In addition, we also propose legislating for an Accessible Information Standard for Scotland which would be applicable to NHS Scotland organisations.
We also plan to do more work to look at how far existing complaints systems meet the needs of neurodivergent people and people with learning disabilities.
Proposal 4: Patient Passports
We could place a duty on Health Boards, HSCPs and Local Authorities to ensure that a person’s “passport” is able to follow them through whichever care pathways they are accessing, such as a hospital or care home admission, and that these passports include important information about their needs and preferences, including how to communicate with them in an accessible way. This could be similar to Advance Statements that can be used by people with mental health conditions, or it could be based on Promoting a More Inclusive Society (PAMIS)’s Digital Passports.
Passports like these help medical professionals to know how best to support people, their preferred treatments or communication styles, and can reduce barriers and frustration when people have to repeatedly restate their needs. There is currently no statutory duty placed on patient passports and, although they are encouraged as best practice, implementation is inconsistent.
Proposal 5: Annual Health Checks
We are currently rolling out annual health checks for people with learning disabilities across Scotland. A health check will be offered to everyone who is eligible by end March 2024, backed by £2m of funding per year. Given the really good evidence of significantly poorer health outcomes of people with learning disabilities, annual health checks will make a big difference. We propose to include the delivery of annual health checks as a specific legal duty in the Bill.
Autistic people, people with Fetal Alcohol Syndrome Disorder (FASD) and Attention Deficit Hyperactive Disorder (ADHD) also have poorer physical health outcomes and/ or a lower life expectancy than the general population. There are many possible reasons for this gap, including poor professional understanding among health and care staff, which can result in these groups people having signs of illness or their needs overlooked. Without the right understanding, these groups can miss out on adjustments needed for them to engage in medical appointments which can lead to distressing experiences and avoiding seeking advice. We could include a duty in the Bill which, in effect, extends the current annual health checks for people with learning disabilities to autistic people. We could also consider extending this to people with FASD and ADHD. We would want to first gather more evidence of the need for this.
What Do You Think?
Which of these proposals do you agree with (if any), please tell us why?
See below
Which of these proposals do you not agree with (if any), please tell us why?
See below
Is there anything else that we should consider in relation to health and wellbeing?
Communication
When thinking about inclusive communication, there needs to be access to a wide range of communication aides beyond verbal communication, eg talking mats and “teach me back” processes which offer a flexibility of approach to ensure understanding of information given, and the ability to communicate needs and wants.
Patient Passports
We believe people who need support should have one central health and social services record that holds all relevant information necessary to provide care and support. This ensures that the individual only needs to tell their story once, avoiding the distress and potential retraumatisation of repeating the same information to multiple professionals. The record should be live document that tracks changes in need, communication style and capacity. We believe that all attempts to address consistency in care records, should be undertaken through the National Care Service Bill.
Drawing on learning from Learning Reviews, it is also important that people involved in the individual’s life, who understand their communication processes have a role in being able to advocate for their needs. This is particularly important where professional relationships are prominent in an individual’s life, time should be given for professionals to attend medical appointments or hospital admissions to enable consistent support for communication. (Adult B Significant Case Review, Glasgow ASP Committee).
Annual Health Checks
We agree that annual health checks are an important part of care provision however this process should not be dependent diagnosis and should be based on needs. Access based on diagnosis alone risks excluding people who are unable to access diagnostic services and would create bottlenecks within those diagnostic services. Access to adequate health care is a human right and any legislation should not inadvertently create barriers for people who need additional support.
Current mental health, capacity and adult support and protection legislation in Scotland can, in certain circumstances, apply to autistic people and people with learning disabilities.
The law uses the term ‘mental disorder’, as defined within the Mental Health (Care and Treatment) (Scotland) Act 2003 (the “Mental Health Act”). We accept that this term is seen by many as stigmatising and offensive towards people with lived experience. However, it is used in this document to reflect the language of the legislation, where needed.
What can the Learning Disabilities, Autism and Neurodivergence (LDAN) Bill do?
The proposed purpose of the LDAN Bill is to better protect, respect and champion the rights of neurodivergent people and people with learning disabilities. The LDAN Bill could, therefore, propose to make changes to mental health and capacity legislation in Scotland as it relates to autistic people and people with learning disabilities. Those changes could be to:
(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.
However, we are not at this time consulting on any proposals for legislative change in this area. This is not because we do not think it is important but because more work needs to be carried out to consider how we balance the different recommendations of the Rome report and the Scottish Mental Health Law Review (SMHLR).
We know that people with learning disabilities and autistic people have been asking for change in this area for a long time. We therefore need to consider what we can do to address these concerns and what this would mean in practice, including any consequences to the rights and protections the Mental Health Act provides to people with learning disabilities and autistic people who are currently treated under this legislation.
We know that people took time to make their views clear to both the Rome review and the SMHLR. We are not asking for those to be reiterated. We now want to develop options and consider whether there is an evidence-base for potentially making changes, ahead of wider reform. We need to more fully understand the consequences and implications of any changes, including any unintended consequences, to ensure that people with learning disabilities and autistic people still have appropriate rights, protections and support where needed.
For example, if we were to remove learning disability and autism from the current definition of mental disorder, we need to understand what this means for some of the people who are currently receiving care and treatment under the Mental Health Act.
A short-term piece of work is being prioritised as one of the first actions under the Mental Health and Capacity Reform Programme. That work will consider the current definition of mental disorder within the Mental Health Act and the approach to compulsory care and treatment and safeguards. This will include, amongst other aspects, consideration of whether learning disabilities and autism should continue to fall within the definition, along with updating the language of the definition.
The outcome of this work may lead to a change in the law. The LDAN Bill may be an appropriate place to make those changes, however, that will be determined once the work has concluded.
Initial work on this has begun with a scoping workshop held in November this year to help inform the design of the workstream.
What Do You Think?
Do you agree with this approach? Please tell us why?
SASW believes legislative change in this area is needed and requires careful consideration to ensure people with learning disabilities and autistic people are not disadvantaged by any changes to the scope of legislation, while having their rights to autonomy and choice protected appropriately. It is key to separate out whether lack of capacity arises from a mental health condition, or from the impact of autism or learning difficulty with the presumption that an individual has capacity unless otherwise evidenced in accordance with the Adults with Incapacity (Scotland) Act 2000. We believe the Mental Health & Capacity Reform group is the right forum for these issues to be considered.
- Section 3: Social Care
For those people who need it, social care, social work and community health are vital supports that enable people to live fuller lives connected to their local communities.
People with learning disabilities and neurodivergent people are more likely to present with care and support needs compared to some other groups and those needs may be perceived as more complex by the people providing the services. Without the right support from care practitioners, people are much more likely to need hospital care. This applies in particular to those with complex care needs.
What can the Learning Disabilities, Autism and Neurodivergence (LDAN) Bill do?
Proposal 1: Neurodivergent and learning disabilities strategies
We are proposing legislative requirements for these strategies in future. For local strategies, we could ask Integration Authorities and local authorities to set out how they and organisations they commission will take into account the needs of neurodivergent people and people with learning disabilities in their workforce planning and workforce training, including how they are meeting requirements around inclusive communications and accessibility.
Proposal 2: Mandatory training for the health and social care workforce
In England, the Health and Care Act 2022 introduced a new legal requirement for all health and social care service providers registered with the Care Quality Commission (CQC) to provide employees with training appropriate to their role on autism and learning disabilities – the Oliver McGowan Training.
We propose to legislate for a similar training requirement for health and social care staff in the LDAN Bill. However, we could take a wider neurodivergent approach to the training so that it focusses on neurodivergence and learning disabilities, and not just autism and learning disabilities.
Proposal 3: Inclusive communication and Accessibility
We propose to legislate for neurodivergent people and people with learning disabilities to be able to request access to alternative means of communication where the offered means of communication will not work for them. We also propose better access to easy-read versions of public facing communications and documents made by public authorities. This could include a broad duty to make them available on request and an automatic duty to provide them in certain circumstances, such as: a duty on National Health Service (NHS) Boards and Health and Social Care Partnerships (HSCPs) to require appointment letters to automatically be produced in easy read.
We also plan to do more work to look at how far existing complaints systems meet the needs of neurodivergent people and people with learning disabilities.
What Do You Think?
Which of these proposals do you agree with (if any), please tell us why?
See our previous responses regarding mandatory training, data collection, strategy and communication.
Which of these proposals do you not agree with (if any), please tell us why?
See above
Is there anything else that we should consider in relation to social care?
See above
Appropriate housing for neurodivergent people and people with learning disabilities is crucial in helping them to live safe and independent lives. Whilst most people live in mainstream housing, for some people accessible or supported housing will be the most appropriate option.
Unsuitable housing can have a negative impact on neurodivergent people, people with learning disabilities, their families and their carers, including impacting on mobility, poorer mental health social isolation and a lack of employment opportunities. Appropriate housing is therefore an essential requirement of independent living.
What can the Learning Disabilities, Autism and Neurodivergence (LDAN) Bill do?
The Bill could provide a stronger focus on how public authorities’ duties around housing and independent living can best be met for people with learning disabilities and neurodivergent people. Some or all of the following could be explored further for possible inclusion in the Bill, or other work.
Proposal 1: Advice, advocacy and guidance
Adequate housing advice, support and advocacy were thought to be necessary to enable neurodivergent people and people with learning disabilities to access their rights to housing and independent living. There is already an advice service available, Housing Options Scotland, however this is not an independent advocacy service.
Whilst another section of this consultation deals with independent advocacy, this could include consideration of the introduction of specialist advocacy services for housing support.
Proposal 2: Neurodivergence and learning disabilities strategies
Strategies are discussed in the overarching themes section of this consultation where we propose legislative requirements for national and local strategies in future. We could require strategies produced by local authorities to set out how independent living principles are embedded into assessment and allocations policies, to ensure real choice and control.
Local Authorities must currently produce Local Housing Strategies. We could consider whether these must also set out how the needs of neurodivergent people and people with learning disabilities are met, and to evaluate their progress.
With regard to Integration Authorities, we could consider requiring that their neurodivergent and learning disabilities strategies must: set out how housing, care and health services are integrated; describe the supports available to people to help them live independently; and, evaluate progress against this.
Proposal 3: Mandatory training for housing professionals
As set out in the overarching themes section, we have proposed introducing a statutory requirement for learning disabilities and neurodivergence training for professionals who work in health and social care settings. We could consider extending this requirement to housing service professionals.
Proposal 4: Data
We could consider the following in relation to data collection on housing and independent living:
- Relevant public bodies, such as local authorities, to improve the way data is collected and shared, on the requirements of neurodivergent people, and people with learning disabilities, and their housing needs.
- Collection of data on how many people with learning disabilities are considered not to have access to appropriate housing.
Proposal 5: Inclusive communications
We are making proposals to improve communications. We think there is likely to be a need for some documents in relation to housing to be available in easy read formats.
What Do You Think?
Which of these proposals do you agree with (if any), please tell us why?
Getting the right housing for people with additional support needs is key to their wellbeing. Scotland needs to have a variety of housing solutions which offer range of living circumstances, eg living alone with support, living in group settings with appropriate support, living with family in adapted accommodation. Social workers have a duty to uphold the rights of individuals to live as they chose, however options for autistic people and people with learning difficulties are often limited by availability of housing provision and the assumptions made about capacity and support needs. While improving communication and ensuring staff are appropriately trained will help the experience of people in need of support, it will not address the primary concern, that there needs to be sufficient, flexible housing options to meet the needs of people who may not be able to live independently.
See also our previous responses relating to advocacy, mandatory training, data collection and communication.
Which of these proposals do you not agree with (if any), please tell us why?
See above
Is there anything else that we should consider in relation to housing and independent living?
See above
We know that some people with learning disabilities who have more complex care needs spend a longer time in hospital than is medically necessary often due to a lack of appropriate community support. This is called delayed discharge. We also know that some people are living away from their home communities and families even though they did not choose to. This is often called living in an inappropriate out-of-area placement.
The Scottish Government knows that this is completely unacceptable and we want to change it. We have been working to improve this for people with learning disabilities and complex care needs and this is often called the Coming Home programme.
What can the Learning Disabilities, Autism and Neurodivergence (LDAN) Bill do?
Proposal 1
Dynamic Support Registers are our new way of ensuring we know how many people are in a delayed discharge or inappropriate out of area placement and involve collecting and publishing this data. We want to strengthen the Dynamic Support Registers and the processes around them through the LDAN Bill so that it becomes law for the relevant local public body (Integration Authority, Local Authority, Health Board) to hold these. This would help to ensure that there is visibility for people with learning disabilities and complex care needs on a national level, and that a consistent approach is taken.
Each area would be required to have a Dynamic Support Register, and to report data from it to Public Health Scotland (PHS) for it to be published. It is important to note that personal information about people on Dynamic Support Registers is not published, and none of the data that is published nationally identifies the individuals that it is about.
If we do not make this a law, then Integration Authorities could decide to monitor people in a different way. It could also be more difficult to ensure that sufficient planning and early intervention is being put in place.
Proposal 2
The National Support Panel (“the Panel”) should work with and support the new Dynamic Support Registers and Peer Support Network and we think there are different ways to do this. We want to consider different options, including whether we should make the Panel statutory in the LDAN Bill.
The Coming Home Implementation Report recommended a National Support Panel that could understand and hear from families and individuals about their individual circumstances. One way to do that is to establish a panel that would look at every individual case.
Although we have thought about this, we do not think it would work in practice due to the length of time it would take a panel to consider every case. We would need several panels to make this work and we would need to use our small pool of experts in Scotland to do this. We think this would make the situation worse for people who need quick solutions.
We have set out below the options we think could work under proposal 2.
Option A: Legislative Panel Conducting Individual Reviews within Defined Parameters
This type of Panel would be made up of sector experts and people with legal and clinical knowledge.
This type of Panel would have a function allowing it to conduct investigations into individual cases on a discretionary basis. The Panel could have a list of potential circumstances that may give rise to a review or investigation and where the Panel members might decide that an investigation would provide a good example of what could be done to address complex barriers or issues.
This would mean that not everyone would get an individual review. However, Integration Authorities, Local Authorities and Health Boards would be able to use the findings and learnings from the Panel’s example individual case reviews to improve their practices.
The Panel would be reviewing fewer cases and therefore the demand on the Panel and its members would be reduced to a manageable level.
Option B: Legislative Panel Conducting Peer Reviews of Local Processes
Another option for a legislative Panel would be one that conducts Peer Reviews of Local Processes.
This Panel would consist of a group of experts who could provide checks and balances through a model of peer reviews. It would be made up of a ‘bank’ of expert members, including people with lived experience, who could be brought in to conduct peer reviews of the work and processes of Health Boards, Local Authorities and Integration Authorities in relation to this population.
This process would involve the Panel going to a local area and reviewing the relevant public bodies’ systems and processes in relation to complex care needs, to identify key challenges and issues. The Panel would then provide recommendations or decisions based on the peer review that the Health Board, Local Authority and Integration Authority would have to implement. The Panel would provide follow up support and would monitor progress.
The Panel might review systems and processes that could be of benefit to everyone – things like:
- Commissioning appropriate accommodation and services
- Securing and financing support packages
- Identifying suitable support providers.
This panel would be legislative, so the relevant public bodies (Health Board, Local Authority, Integration Authority) could be required by law to participate and could also be required by law to implement the recommendations made by the Panel.
Although this type of Panel would not be able to review individual cases as part of their role, their reviews would have a significant impact on those individual people and their outcomes.
Option C: Non-legislative Panel Conducting Peer Reviews of Local Processes
A non-legislative National Support Panel Conducting Peer Reviews of Local Processes would work in the same way as the Panel described in Option 2, however it would not be legislative.
Because this Panel would be non-legislative, it could be set up more quickly than a legislative one. However, it would not be the law for Health Boards, Local Authorities or Integration Authorities to participate in peer reviews. The peer reviews would be voluntary, with the option of local areas being able to request a review.
What Do You Think?
- Should there be a statutory duty upon the relevant public body or bodies (Integration Authority, Health Board, Local Authority) to hold a Dynamic Support Register? (Proposal 1)
Yes No
Please tell us more?
Maintaining a Dynamic Support Register enables data to be gathered which in turn can inform policy and practice relating to complex care needs. This register can hold consistent data which allows comparison and identification of strengths and weaknesses within systems and enable constructive change.
- Which of the options for the National Support Panel (Proposal 2) do you think has the most benefits?
Option A
Option B
Option C
Please tell us more?
There is already a model for independent review within public protection in relation to the commissioning of Learning Reviews. Adopting a similar process for review of complex care would draw on existing processes and would focus limited expertise on cases which merit review and where significant learning may be found. Any independent review process must have clear timescales for the completion of reviews to ensure that learning outcomes are identified in a timely manner and implemented quickly.
While there is an argument for review of local authority processes, it is often in individual cases where the unintended impact of those processes can be seen clearly, with learning used to inform systemic change.
Are there any other options that you think we should consider?
See above
Children, young people and adults that have a learning disability or are neurodivergent have the right to the same opportunities as anyone else to live satisfying and valued lives and, to be treated with the same dignity and respect. They should be able to develop and maintain relationships and get the support they need. However there are a range of barriers that prevent some neurodivergent people, and people with learning disabilities, from having healthy and fulfilling relationships. This often causes loneliness, social isolation, poor mental health, and trauma.
What can the Learning Disabilities, Autism and Neurodivergence (LDAN) Bill do?
Proposal 1: Access to Independent Advocacy
Another section of this consultation discusses independent advocacy. We would like views on any specific circumstances where a right to independent advocacy could make a difference. With regards to this section on relationships, this could include:
- where a parent with learning disabilities is at risk of their child being taken into care; and,
- where a neurodivergent person or person with learning disabilities have disclosed gender-based violence or abuse. This would aim to enable them access to justice and support (as recommended in Unequal Unheard).
Proposal 2: Data
The overarching section of this consultation sets out some broad proposals on data. With regards to relationships, we could consider data collection on the following:
- Data collection and reporting on gender-based violence affecting women with learning disabilities (as recommended in Unequal Unheard).
- Data collection and reporting on the number of parents with learning disabilities in Scotland, including where their children have been removed from their care. This acknowledges that there is currently a lack of knowledge of this population which may impact on the availability and range of services provided.
Proposal 3: Inclusive communications
We have made some proposals on inclusive communications, and we have asked for views on particular situations where a strengthened right to and focus on inclusive communications would have an impact. With regards to relationships, we could explore the following:
- Where a person with learning disabilities is at risk of having their child removed from their care. This could include information automatically being provided in easy-read, and support provided by professionals who have specialist training in learning disabilities.
- Where a neurodivergent person, or person with learning disabilities, has disclosed gender-based violence or abuse and is interacting with the justice system. This could include information automatically being provided in easy-read, and support provided by professionals who have specialist training in learning disabilities.
Proposal 4: National and Local Strategies
We have set out a proposal for national and local strategies. As part of this, we could explore whether those strategies should include the following with regard to relationships:
- Local authorities to set out how a multi-disciplinary team and Whole Family Approach is being implemented to proactively support neurodivergent parents and parents with learning disabilities, including reporting on and evaluating this approach.
- Police Scotland to set out how people with learning disabilities are provided specialist support to report crimes, including gender-based violence and abuse.
- Local authorities or Education authorities to set out how Relationships, Sexual Health and Parenthood (RSHP) education is provided to all Additional Support Needs learners.
- Local authorities to set out how they provide services to neurodivergent people and people with learning disabilities to enable them to be active and involved in their communities and meeting other people, rather than being isolated at home as is often the case. This could include evaluating the impact of these services.
Proposal 5: Accountability
Another section of the consultation sets out options for increased accountability. This includes proposals for a new Commission/er specifically for neurodivergent people and people with learning disabilities, as well as considering changes to the power and remit of existing Commissions or Commissioners.
If a new or existing body had powers of investigation they may be able to investigate ongoing and historic cases of child removal from parents with learning disabilities, based on their disability.
What Do You Think?
Which of these proposals do you agree with (if any), please tell us why?
SASW believes each of these proposals have some merit in supporting people with learning disabilities and autistic people. Making and maintaining relationships is a basic human right, all people should have capacity and support to sustain family relationships and be able to access social support appropriate to their needs.
Parents with learning disabilities and autistic people are disproportionately represented in child protection processes, which are complex and often traumatising for people involved. Supports for parenting are often not presented in a way that is accessible for people with complex needs and assumptions may be made about parenting capacity particularly where individuals struggle to participate fully in parenting capacity assessments and formal child protection processes.
While having information available in easy read format is helpful, people with learning difficulties and autistic people may have challenges in processing and retaining information, or being able to translate that information into action. As such professionals involved in assessing parents should have a range of communication skills and aides to ensure that information has been understood, and can be acted upon. They must also facilitate parents in making their needs known, ensuring they are able to represent the views of parents and carers in any child protection process. Where removal of children is a possibility, parents with learning difficulties or neurodivergence should have access to independent specialist advocacy services to ensure their views are heard and their rights upheld.
Given the very high prevalence of domestic abuse within relationships for people with learning disabilities and autistic people, access to specialist support should be made available to people with learning difficulties and neurodivergent people. This should include education around safe, healthy relationships, support with understanding boundaries within relationships and help to leave abusive relationships. Staff should have a good understanding both of the dynamics within abusive relationships and supporting people with learning difficulties and autistic people. Support should be provided to report crimes of domestic abuse, sexual abuse and other forms of mistreatment as all people have a right to seek justice when offended against. This will take resource and skills development for staff to feel confident in offering this support with the government committing to adequately resourcing such services.
Which of these proposals do you not agree with (if any), please tell us why?
See above
Is there anything else that we should consider in relation to relationships?
See above
- Section 7: Access to Technology
Over recent years digital access has become increasingly important to the way we live our lives. It is important to stay connected with family, friends and our communities, as well as being able to access learning and employment opportunities online. Digital inclusion therefore plays a key role in a person’s independence. The pandemic made the importance of digital access even more critical, due to many services moving online.
There are many people with learning disabilities who have difficulties accessing digital devices or using digital services and are at risk of being digitally excluded.
There is a need for security, awareness and training in terms of how to use technology and how to use technology safely.
What can the Learning Disabilities, Autism and Neurodivergence (LDAN) Bill do?
We have made proposals for inclusive communications and we would expect this to have a positive impact on increased digital access.
Proposal 1 - We could also consider how to ensure that training is available to people with learning disabilities in digital skills and online safety.
Proposal 2 - We could gather clear data on the number of people with learning disabilities and neurodivergent people accessing and using technology.
Proposal 3 - We could make more support available to directly help people with learning disabilities and neurodivergent people access and use technology.
What Do You Think?
Which of these proposals do you agree with (if any), please tell us why?
All of these proposals have merit, however they will require resource to achieve. Access to technology enables people to engage with the wider world in a way that they chose, and to contribute to society to the best of their capacity. This is a fundamental human right. In the modern world relationships, employment, education, benefits system, housing, financial services, social engagement are extremely difficult to navigate except through digital means. Digital means need to made more inclusive, where people cannot access digital means there needs to be a process of guardianship, advocacy and support to ensure access to essential services.
Which of these proposals do you not agree with (if any), please tell us why?
See above
Is there anything else that we should consider in relation to access to technology?
See above
- Section 8: Employment
Employment can help people to feel valued and contribute to more independent living. While employment should not be seen as the only option to be a valued member of society, opportunities and choices to work are important for everyone.
The Scottish Government is focused on supporting those furthest from the labour market to progress towards, enter, and sustain employment. We are committed to high quality, fair and inclusive work and employability support. However, we know that many neurodivergent people and people with learning disabilities continue to face barriers to employment.
What can the Learning Disabilities, Autism and Neurodivergence (LDAN) Bill do?
Disabled people face some of the most persistent labour market barriers, which is why we have committed to at least halve the disability employment gap by 2038. We agree that more needs to be done to support people with learning disabilities and neurodivergent people to access fair and sustainable employment, particularly in light of the available data which suggests these groups achieve some of the poorest labour market outcomes, even compared to wider disability groups.
However, given the work that is currently ongoing, and our limitations on changing the law in this area, we are not currently proposing any legislative changes. Instead, we intend to explore the following in order to promote and encouraging more inclusive approaches:
- Training for job coaches on neurodivergence and learning disabilities in the workplace: we are taking forward the Review of Supported Employment within Scotland (2021), which recommended that work continues to support the professionalisation of the supported employment workforce, including ensuring it is well equipped to provide appropriate support to people with learning disabilities and neurodivergent people.
- We will review the language within impairment level (employability) data that the Scottish Government collects on employability to ensure it is consistent with the language individuals and professionals use.
What Do You Think?
Do you agree with this approach? Please tell us why?
See previous responses regarding data collection, advocacy, mandatory training and strategy
Social security is a human right and is essential to the realisation of other human rights. None of us know when we might need it. It is a shared investment to help build a fairer society, together. Social security is key for disabled people, including neurodivergent people and people with learning disabilities, to gain independence from families, boost their social participation and support their ability to live with dignity. It can enhance the productivity, employability and economic development of disabled people. And, ultimately, help to tackle inequalities and allow every person in Scotland to live with dignity, fairness and respect.
We know that neurodivergent people and people with learning disabilities are less likely to be in employment and are therefore more likely to need social security support. For those who are in employment, we know that they may also need social security support if they are unable to work full time, or to help with the additional costs of being disabled.
Neurodivergent children and young people, and children and young people with learning disabilities, and their families, may also need support with the additional costs of being disabled.
What can the Learning Disabilities, Autism and Neurodivergence (LDAN) Bill do?
Proposal 1 National and Local Strategies
Requiring Social Security Scotland to report on, and evaluate, how its inclusive communication strategies have taken into consideration the needs of people with learning disabilities and neurodivergent people.
Proposal 2: Mandatory training for social security staff
We have set out proposals for mandatory training for health and social care staff and we invite views on whether there are other public sector areas this should extend to.
With regard to Social Security Scotland, we are aware that there is likely to be a significant proportion of people with learning disabilities and neurodivergent people who are eligible for social security, given the employment rates. We could therefore explore whether there is a need for training on learning disabilities and neurodivergence to be a statutory requirement for some Social Security Scotland staff.
Proposal 3: Data collection
We have set out broad proposals on data in the overarching themes section. To better understand neurodivergent and learning disabilities groups and their needs, including how many people are accessing social security benefits, current data reporting could be disaggregated further. For example, current data reporting on Adult Disability Payment (ADP) in Scotland has a category for “autism and other developmental disorders” but does not report on learning disabilities, Attention Deficit Hyperactive Disorder (ADHD), and Fetal Alcohol Spectrum Disorder (FASD) or other conditions separately.
What Do You Think?
Which of these proposals do you agree with (if any), please tell us why?
Please see our previous responses regarding mandatory training, data collection and strategy.
Which of these proposals do you not agree with (if any), please tell us why?
See above
Is there anything else that we should consider in relation to social security?
See above
Although there is a lack of robust data, there are indications that people with learning disabilities and neurodivergent people may be over-represented in the criminal justice system and that their needs can be unidentified and unmet. This can be because of inaccessible information, lack of knowledge and lack of a reliable method of identifying people with vulnerabilities.
What can the Learning Disabilities, Autism and Neurodivergence (LDAN) Bill do?
There are many developments happening across the civil and criminal justice system that have the potential to be very positive for neurodivergent people and people with learning disabilities. Some of those changes are broad and not specifically adapted for neurodivergence and learning disabilities but trauma focused work is a key theme that can be built upon for these groups.
We think that there is merit in exploring the extent to which the Bill could seek to improve the position for a neurodivergent person or person with learning disabilities interacting with the justice system in the following ways.
Proposal 1: Strategies and a co-ordinated approach
We could consider bringing together a single national strategy that deals with neurodivergence and learning disabilities in the civil and criminal justice systems. There are many complex interactions between different parts of the justice system that would benefit from this approach and allow a clear set of priorities to be developed reflecting the other proposals below.
Proposal 2: Data and the identification of neurodivergent people and people with learning disabilities in the justice system
It is a critical requirement to ensure that neurodivergent individuals and people with learning disabilities and their needs can be appropriately identified at key points of contact with the justice system. This is to ensure that:
- The right kind of communication is used and it is adapted for neurodivergent people and people with learning disabilities;
- Any additional impact of a situation, for example admittance to custody is understood and appropriate adjustments made such as to the physical custody environment;
- Additional supports are provided, such as an Appropriate Adult in criminal justice and access to independent advocacy;
- Appropriate information is fed into key decision points in the justice system to help provide more accurate future data.
At present the onus in the criminal justice system is often on individual police officers to recognise and flag up any additional needs. We want to consider how best to ensure that neurodivergence and learning disabilities are better identified at relevant points and by relevant staff.
The Bill could potentially place a duty on public bodies such as the Police, Crown Office and Procurator Fiscal Service (COPFS), and the Scottish Prison Service to seek to identify neurodivergence and learning disabilities when people are coming into contact with the criminal justice system. This could apply at key points such as:
- When a victim or witness comes forward
- When someone is arrested and brought into custody
- When someone is sentenced
- When someone is admitted to prison to begin a sentence
This is not about diagnosis - it is about identifying the need for support.
It may also be possible to investigate whether a common screening tool across criminal justice agencies could help.
Proposal 3: inclusive communication
Inclusive communication is critical for neurodivergent people and people with learning disabilities and we have set out broad proposals around this in the overarching themes. Those in contact with the criminal and civil justice systems need to be able to fully understand the information they are being given whether they are a victim, witness, party or potential offender. If information is not accessible this can result in people being either unaware of their rights or unaware that they are at risk of breaching standard or special bail conditions. The approach we have set out earlier in this consultation on inclusive communications proposes:
- Better access to easy-read versions of public facing communications and documents made by public authorities. This could include a broad duty to make them available on request and an automatic duty to provide them in certain circumstances. For example, a duty on the Police, the Scottish Courts and Tribunal Service and the Scottish Prison Service to provide information to people accused or convicted of a crime in an accessible way, including standard bail conditions.
- Provide for neurodivergent people and people with learning disabilities to request access to alternative means of communication where the offered means of communication will not work for them. This could mean being able to ask for an online meeting rather than face to face or a telephone call instead of a letter.
Proposal 4: Mandatory Training
Proposals in relation to mandatory training are set out in the overarching themes section. We propose that the Bill provides for training on neurodivergence and learning disabilities to become mandatory for health and social care staff, and we are seeking views on whether this should be extended to other public bodies.
We could therefore consider extending the requirement for mandatory training to police, prison, COPFS and relevant courts and tribunals staff. We think that mandatory training for staff in the civil and criminal justice systems is a key element to support better identification of needs, better support and improved communications. We know that not all staff will need this but public facing staff would, and we could consider how to define this in the Bill for new and existing staff.
We have set out our proposals on advocacy in the overarching themes section. There is currently work going on across the Scottish Government to consider a consistent approach to advocacy and this includes neurodivergent people and people with learning disabilities. We do not want to take anything forward separately on advocacy that is not informed by this work. If necessary, and if this work is not concluded, we could consider the Bill conferring a power that would enable the Scottish Ministers to make any necessary regulations on independent advocacy for neurodivergent people and people with learning disabilities, should this be required.
In addition, mandatory training could include information about the role and availability of advocacy in the civil and criminal justice systems as well as information about the Appropriate Adults scheme.
Proposal 6: Diversion from Prosecution (DfP)
As with others, neurodivergent people and people with learning disabilities may benefit from the use of DfP where they are alleged to have committed offences. Better identification within the justice system and training for staff to understand how to do this could help. A requirement to identify needs should allow better information to be provided by the Police to COPFS in the Standard Prosecution Report (SPR). The SPR is the basis on which COPFS can make a decision about DfP. This will also help local authorities when they complete their DfP assessment as they would need to take this into account.
Training and awareness raising provided to professionals working in COPFS on neurodivergence and learning disabilities, how it impacts on people’s lives, and how it can have an influence on offending behaviour could help with increasing consistency of decisions around DfP for these groups. This training could include the role of support in reducing the likelihood of re-offending.
What Do You Think?
Which of these proposals do you agree with (if any), please tell us why?
Please see previous comments regarding advocacy, mandatory training and data collection.
Which of these proposals do you not agree with (if any), please tell us why?
See above
Is there anything else that we should consider in relation to justice?
See above
We know that neurodivergent children and young people and those with learning disabilities can have negative experiences at school where restraint or seclusion is used in response to distressed behaviour.
We know that adults in certain settings, including hospital or care settings, may also have negative experiences as a result of restraint or seclusion being used inappropriately.
It is not acceptable for neurodivergent people and people with learning disabilities, or anyone else, to be subject to the misuse of restraint, seclusion or other restrictive practices. This can lead to increased and unnecessary distress and trauma.
What can we do about it?
We have committed to exploring options for legislation in this area that would apply equally to all schools (education authority, independent and grant-aided). This includes the option of statutory guidance.
However, we do not think that the Learning Disabilities, Autism and Neurodivergence (LDAN) Bill would be the right place to do this because it would need to apply to all children and young people, and not just neurodivergent children and young people and children and young people with learning disabilities.
What Do You Think?
Do you agree with this approach? Please tell us why?
While any legislation relating to use of restraint or isolation should apply to all children and young people, neurodivergent children and children with learning difficulties are more likely to experience the use of restraint within formal and informal settings. Use of restraint is often explained in terms of safety for the child and for others however, the use of restraint may not follow safe holding guidelines including a process of debriefing for children and young people following restraint. Children with learning difficulties and autistic children may not be able to clearly communicate their experiences or raise concerns about use of restraint, leaving them increasingly distressed and unable to access help and support. Legislation should recognise the increased risk, increased duty of care and the right to protection from inappropriate and unsafe restraint practices.
Workers have the right to safety in their workplace, this can be a particular challenge for people working with our most vulnerable children and young people who may be unpredictable and volatile in their behaviours. Professionals working with autistic children and children with learning difficulties should receive appropriate training and support to ensure a safe working environment for staff, while also respecting the rights of children and young people. This relies on services being well resourced with adequate staff to child ratio to ensure children and young people have their needs met, reducing the potential for emotional dysregulation which may result in violent or aggressive incidents.
The Promise has made it clear that the use of restraint is unacceptable in all but the most extreme of situations, and we understand there is further consultation planned for the latter end of 2024.
We know that accessible travel can enable people to enjoy a better quality of life, feel more connected to their community and reduce social isolation. However, we understand that there can still be barriers to transport and travel for neurodivergent people and people with learning disabilities.
Not being able to travel easily, comfortably and safely will impact many areas of life such as employment, education and access to health, social care and day services, and basic needs like getting shopping and socialising.
What can the Learning Disabilities, Autism and Neurodivergence (LDAN) Bill do?
An ambitious and wide ranging programme of work is already underway to make improvements for disabled people when travelling, and this work is being informed and influenced by people with lived experience.
Whilst some aspects of transport are reserved to the UK Parliament and UK Government, there are some areas that we could explore in relation to the LDAN Bill:
Proposal 1: National and Local Strategies
Regional transport Partnership’s (RTPs) were established to strengthen the planning and delivery of regional transport so that it better served the needs of people and businesses. They publish regional transport strategies specific to each region, supported by a delivery plan. RTPs bring together local authorities and others to take a strategic approach to transport in each region of Scotland. We could consider requiring RTPs to set out in their transport strategies how the specific needs of neurodivergent people and people with learning disabilities are being considered and met through travel information systems and accessibility initiatives.
We could also consider a requirement to set out in RTP travel strategies how staff across different modes of transport are being trained in disability awareness, how that training incorporates specific training on neurodivergence and learning disabilities, and the uptake of this.
Proposal 2: Mandatory training
Various actions and commitments around disability awareness training for transport staff are in place or are currently being progressed but is not a statutory requirement and is not necessarily consistent.
We have also set out in a previous section proposals for mandatory training for public sector staff on neurodivergence and learning disabilities, primarily in relation to health and social care staff, and have invited views on whether this requirement should be extended to other public sector areas. We could consider extending this requirement to transport staff in Scotland.
What Do You Think?
Which of these proposals do you agree with (if any), please tell us why?
See previous comments regarding mandatory training and strategy
Which of these proposals do you not agree with (if any), please tell us why?
See above
Is there anything else that we should consider in relation to transport?
See above
This section relates to children and young people in early years, primary and secondary school education settings. Higher and Further Education and University education is considered within the scope of another section of the consultation, called Children and Young People -Transitions to Adulthood.
Neurodivergent children and young people, and children and young people with learning disabilities should be able to reach their full potential and live happy and fulfilling lives. Without the right learning experiences and support, these children and young people are likely to be disadvantaged, their quality of life adversely affected and their aspirations unreached. This can be particularly felt by children and young people with profound and multiple learning disabilities for whom specialist education is the most appropriate option.
Neurodivergent children and young people, and children and young people with learning disabilities, their families, and organisations that represent them have consistently raised concerns that these groups are not having their right to education fulfilled and are missing out on reaching their full potential, which may contribute to poorer outcomes in adult life.
In Scotland, the education system aims to be fully inclusive. There is a legal presumption that children will be educated in mainstream schools except for in exceptional circumstances.
What can the Learning Disabilities, Autism and Neurodivergence (LDAN) Bill do?
An independent review of additional support for learning legislation found that the legislation is not deficient. However, it found a gap between the policy intention of the legislation and its implementation. Since then, a Additional Support for Learning (ASL) Review Action Plan has, and is currently being, progressed. This work is being done in partnership with Convention of Scottish Local Authorities (COSLA) and the Association of Directors of Education in Scotland (ADES). Whilst there is a comprehensive and robust action plan in place to address the implementation gap, the following proposals could potentially be explored in relation to the Bill:
Proposal 1: Strategies and reporting requirements
The 2000 Act imposes duties on education authorities and schools to plan and report annually on the measures that they are taking to address the key priorities of the National Improvement Framework (NIF). The statutory guidance to support these legislative duties is currently being reviewed. We could consider whether to create a new requirement for education authorities and schools to include in their plans and reports an articulation of how the specific needs of neurodivergent pupils and pupils with learning disabilities have been considered and are being met.
We could consider whether to require that Children’s Services Plans Annual Reports should include specific consideration of neurodivergent children and young people and children and young people with learning disabilities.
Proposal 2: Mandatory training for teachers, practitioners and other educators
We have set out proposals for a mandatory training requirement for health and social care staff, and are seeking views on whether this should extended to other public sector areas. Therefore, we could explore:
(a) whether there is a need to set out anything in legislation regarding the training requirements for student teachers, given the recently updated Standard for Provisional Registration;
(b) whether there is a need to set out anything in legislation regarding the training requirements for student Early Learning and Childcare (ELC) practitioners; and,
(c) whether there is a need for a mandatory training requirement for teachers, practitioners and other educators on learning disabilities and neurodivergence as part of their Continued Professional Development (CPD).
Proposal 3: Data
Current Additional Support Needs (ASN) data reflects that children and young people have a wide ranging spectrum of learning needs. Within this, there is disaggregated data available on some conditions but not others. For example, there is disaggregated data available on learning disabilities, autism and dyslexia but it isn’t available on Attention Deficit Hyperactive Disorder (ADHD), and Fetal Alcohol Spectrum Disorder (FASD), Dyscalculia and other neurodivergent conditions.
To better understand all neurodivergent children and young people and their experiences and outcomes in relation to education this data could be collected and published. This would allow for reporting on the attainment gap of these groups, school leavers and positive destinations, and to understand the size of these populations and any trends. There may also be a need for data on the use of part-time timetables.
What Do You Think?
Which of these proposals do you agree with (if any), please tell us why?
See previous comments regarding mandatory training and local/national strategy
Which of these proposals do you not agree with (if any), please tell us why?
See above
Is there anything else that we should consider in relation to education?
See above
The term ‘transitions to adulthood’ will mean different things to different young people, and as such will be achieved in many different ways and timescales. In their Principles of Good Transitions, The Association for Real Change (ARC) Scotland refer to this as the period when young people develop from children to young adults. This is not a single event, such as leaving school, but a growing-up process that unfolds over several years and involves significant emotional, physical, intellectual and physiological changes. Transitions also impact on the family of, or those who care for, the child or young person.
What can the Learning Disabilities, Autism and Neurodivergence (LDAN) Bill do?
In their Stage 1 Report on the Disabled Children and Young People (Transitions to Adulthood) (Scotland) Member’s Bill, the Education and Skills Committee noted that many people have described the current legislative landscape as being complex, cluttered, and difficult to navigate for young people and their families, and, in some instances, for the professionals working to support them.
The Committee’s report concluded that “… the Committee is not yet convinced that introducing further legislation in an already cluttered and complex legislative and policy landscape will resolve the issues…”. Rather, there was thought to be a “significant implementation gap between the [existing] intended policy and the experiences of children and young people.” In the Stage 1 debate on the general principles of the Bill, on 23 November 2023, the Bill fell and so will not become law.
Specifically in relation to data, we will consider whether our approach ensures that disaggregated data for neurodivergent young people and young people with learning disabilities is made available to:
- enable us to better understand and measure the extent to which these young people are experiencing a positive and supported transition to young adult life;
- ensure the visibility of these young people;
- help inform the work that will take place under a National Transitions to Adulthood Strategy; and,
- help to inform the development of services to meet the needs of these young people when transitioning to adulthood.
What Do You Think?
Do you agree with this proposal, please tell us why?
See previous comments regarding local/national strategy
Do you not agree with this proposal, please tell us why?
See above
Is there anything else that we should consider in relation to Children and young people – Transitions to adulthood?
See above
- Part 4: Accountability
Throughout our early work we have heard many different views on how people think their rights can best be enforced. One thing most people with learning disabilities and other neurodivergent people agree on is that they often have trouble knowing what their rights are and being able to properly access their rights. Most people would like to see more accountability to make sure rights are not ignored.
When thinking about accountability, people like different models – some people want to see a new body to enforce rights and some people want to see greater accountability within existing public bodies or a specific role within an existing human rights body, such as the Scottish Human Rights Commission.
What can the Learning Disabilities, Autism and Neurodivergence (LDAN) Bill do?
The Bill can be used to ensure that there is improved accountability for the delivery of rights. There are different ways to do this and we have set out some options.
Option 1: A new Commission or Commissioner
A Commission or Commissioner could be set up to help people secure their rights. A Commissioner is one person whereas a Commission might have a board with several people on it.
Either of these would be set up to be independent of Government and its powers and duties and appointments process could be set out in the Bill. These could include the following:
- Consult and involve neurodivergent people and people with a learning disability in the appointments process and work programme,
- Promote human rights,
- Conduct research,
- Hold the Government to account,
- Hold public bodies to account by conducting inquiries and formal investigations,
- Power to bring court proceedings,
- Publish an annual Strategic Plan and financial accounts,
- Collate and publish data and report regularly to the Scottish Parliament on key outcomes for neurodivergent people and people with learning disabilities,
Option 2: Better resourcing and additional duties for an existing Commission or Commissioner
Neurodivergent people and people with learning disabilities already come within the remit of the Scottish Human Rights Commission (SHRC), the European Convention on Human Rights (EHRC), the Children and Young People’s Commissioner and other more specialist bodies like the Scottish Public Services Ombudsman (for public service complaints) and the Mental Welfare Commission.
However, these bodies cover the needs of a broader range of people than those with neurodivergence or learning disabilities. This means that they have to take decisions on where to spend their resources and time and prioritise some issues over others. We know that the needs of people with learning disabilities and neurodivergent people are often not being met even though these bodies are doing many good things. But there is not a specific focus on these groups.
Rather than setting up a new body we could look to our existing bodies and provide additional resources and potentially powers and duties that would allow them to play a more comprehensive role in upholding the rights of neurodivergent people and people with learning disabilities.
We would need to decide which body could best do this. The Bill could amend the legislation that established the body chosen.
Option 3: Champions and Advocates within Public Bodies
Scotland has many public bodies whose roles are central to the experiences that neurodivergent people and people with learning disabilities have in their daily lives as they have responsibility for administering many key areas of life such as education, health and social care, and justice.
This option could involve having people with lived experience of neurodivergence or learning disabilities, or people selected by people with lived experience of neurodivergence or learning disabilities, raising awareness of rights within public bodies and promoting a culture where the rights of neurodivergent people and people with a learning disabilities are upheld.
Public bodies include local councils, healthcare providers like the National Health Service (NHS), the Police and many other bodies.
We could explore the potential for the Bill to make provision for this role to be appointed within all Scottish public bodies and could clarify the remit and appointments process.
Option 4: Better resourcing for existing Disabled People’s Organisations who support neurodivergent people and people with a learning disability
When we refer to Disabled People’s Organisations (DPOs), we mean those organisations that are led by disabled people themselves. They are directly connected to the communities that they support.
In Scotland, many DPOs receive funding from local councils or the Scottish Government. DPOs include Autistic People’s Organisations (APOs) in Scotland (there are several) and People First, which is an organisation led by people with learning disabilities.
This option would mean better resourcing of existing DPOs to allow them to support and advocate for the rights of neurodivergent people and people with learning disabilities.
Although the Scottish Government and other organisations already fund DPOs, including some APOs and People First, funding can be limited or directed at particular projects or policies. We know that DPOs work very hard on behalf of the people they represent and have knowledge and understanding of the issues that often come from their own experiences.
This could involve us working continuously with people with lived experience (like the Lived Experience Advisory Panel (LEAP)) to produce national standards and guidance to help people understand the needs and wishes of neurodivergent people and people with learning disabilities and uphold their rights.
It could include providing guidance to schools, universities, councils, healthcare providers, the police, and others. However, we already do this kind of work and there are still many serious issues experienced by people with learning disabilities and neurodivergent people. This guidance, and accompanying tools, could help people within these organisations understand how to respect the rights of neurodivergent people and people with learning disabilities.
What Do You Think?
Which of the 5 options set out above do you think would best protect, respect and champion the rights of neurodivergent people and people with learning disabilities? You can select multiple options if you wish.
Option 1 ☐
Option 2 ☒
Option 3 ☒
Option 4 ☒
Option 5 ☒
Please give the reason for your choice(s).
We consider that a combination of Options 2-5 would give the best landscape for promoting and protecting the rights of people with learning disabilities and neurodivergent people.
Are there any other options we should consider? Please give details.
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