Learning Disabilities, Autism and Neurodivergence Bill: consultation

Part 1: Reach and definitions: who should the 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 we know

In Scotland, along with the rest of the UK, disabled people are protected against discrimination, harassment and victimisation by the Equality Act 2010 ("the Equality Act"). The Equality Act also requires public authorities and others to make reasonable adjustments for disabled people in areas like education and employment, to assist them to engage with these on an equal footing to non-disabled people.

Neurodivergent people and people with learning disabilities are covered by the Equality Act, if they can align their presentations with the definition of disability under the Act. Under the Equality Act, a person has a disability if they have a physical or mental impairment that has a substantial and long-term adverse effect on their ability to carry out normal day-to-day activities.^[61] 'Long-term' in this context means 12 months or more.^[62] Official guidance accompanying the Equality Act specifically includes Attention Deficit Hyperactivity Disorder (ADHD), learning disabilities, Down's Syndrome, dyspraxia, and autism as disabilities.^[63]

There are also existing laws applying in England that have been made to help specific groups of neurodivergent people and people with learning disabilities. These include the Autism Act 2009 and the Down Syndrome Act 2022. However, neither of these Acts provide specific definitions for autism or Down's Syndrome. Neither Act applies to Scotland.

Many neurodivergent people and people with learning disabilities report that they do not receive the support and protection from discrimination to which they are entitled. For example, as part of a review of the Autism Act 2009, autistic people reported that they were told by professionals they would not be found eligible for support because autism is not automatically considered a disability under the Equality Act.^[64]

Furthermore, existing definitions within Scots law may project a negative impression of neurodivergent people and people with learning disabilities. For example, the Mental Health (Care and Treatment) (Scotland) Act 2003 ('The Mental Health Act') lists 'learning disability' under its definition of 'mental disorder'.^[65] We accept that this term is seen by many as stigmatising and offensive towards people with lived experience, and the LEAP were of the view that it is upsetting, degrading and insulting.

The Independent Review of Learning Disability and Autism in the Mental Health Act (the Rome Review) suggested that the inclusion of learning disability under this definition led to people with learning disabilities being detained unnecessarily, and in violation of their rights.^[66] The Review recommended that autism and learning disabilities should be defined in a new law, and this is discussed further at another section of this consultation on 'Mental Health and Capacity Law'. The Review recommended that a new law use the following definitions:

'An autistic person is a person who has a professional diagnosis of autism'.

'A person with intellectual disability is a person who has a professional diagnosis of intellectual disability'.

The term 'intellectual disability' is often used as an alternative to 'learning disability'.

The LDAN Bill presents an opportunity to establish legal definitions for various communities under Scots law. Specifically, it presents an opportunity to set out definitions that are aligned with how such people prefer to represent and refer to themselves.

Whatever definitions we use in the Bill, we will also need to think about how we keep them up to date and future-proof the legislation. There may therefore be a benefit in the Bill containing a power to make future changes to definitions by regulations.

The Scottish Government is committed to the social model of disability. Unlike the medical model, where an individual is understood to be disabled by their impairment, the social model views disability as the relationship between the individual and society. In other words, it sees the barriers created by society, such as negative attitudes towards disabled people, and inaccessible buildings, transport and communication, as the cause of disadvantage and exclusion, rather than the impairment itself. The aim, then, is to remove the barriers that isolate, exclude and so disable the individual.^[67]

Because the social model of disability focuses on impairment, it allows people to be recognised as disabled even if they do not have a formal diagnosis. The key consideration is how people are impaired by social and built environments. Definitions focused on impairment rather than diagnosis could, therefore, better help public bodies in Scotland to identify and remove relevant barriers that create such impairments.

What we have heard

Our scoping work on the Bill ^[68] helped us to obtain insight on this issue from people with lived experience of neurodivergence and learning disabilities, alongside organisations that work with and advocate for them. People expressed a range of views:

• There was consensus amongst participants in the scoping work that the Bill should cover people without a formal diagnosis of any of the conditions that this Bill might cover.
• Many people supported a Bill with a wide coverage, covering the full range of neurodivergent people as well as people with learning disabilities.
• Some people were less supportive of the reach of the Bill being as broad as this. They expressed concern that too broad a reach would not effectively target the needs of any individual or group.
• Some people wanted to name specific conditions within the Bill to ensure that the groups associated with these conditions were sufficiently visible and supported.
• People expressed strong preferences for language associated with the social model of disability, rather than a medical model, to be used throughout the Bill.
• There was broad support for terms such as 'neurodiversity' and 'neurodivergence'. However, people wanted language to be as inclusive as possible, and to be adaptable to social changes. Some people with learning disabilities find the terms 'neurodiversity' and 'neurodivergence' unhelpfully vague.

What did LEAP think?

• 'Neurodiversity' means everyone, and was not an appropriate definition for who this Bill was for. 'Neurodivergence' was broadly welcomed as a term, though not as familiar to people with learning disabilities.
• Limiting the coverage of the Bill to a subset of specific conditions would limit the Bill's impact, but naming some conditions (in addition to a broad definition of neurodivergence) could help ensure visibility for marginalised groups.
• Down's Syndrome should not be defined separately to learning disabilities. This is because Down's Syndrome is a genetic condition which can cause the people in whom it develops to have a learning disability. People with Down's Syndrome are commonly included in the broader category of people with a learning disability.
• It would be helpful to use a person-centred and strengths-based approach to definitions, focusing on abilities rather than deficits and describing barriers. This approach could look similar to the one adopted in Sweden, where legislation was passed in 1993 for People with Certain Functional Impairments^[69] to protect the rights of people in need of wide-ranging support. The legislation is not based on a person's diagnosis but rather the person's needs, wishes and condition.
• People with Down's syndrome and people with profound and multiple learning disabilities (PMLD) should both be explicitly referenced in the coverage and definition of the Bill.

Where do we want to get to?

• The clear reach of the Bill and its provisions makes a difference in Scotland to how neurodivergent people and people with learning disabilities are seen and treated.
• Neurodivergent people and people with learning disabilities feel more visible as a result of the Bill and are clear about who it applies to.
• Everyone providing support or services, such as healthcare, education, and care, to neurodivergent people and people with learning disabilities are clear about their duties under the Bill and who this applies to.
• People without a formal diagnosis are clear about how the Bill may or not apply to them.

What definitions already exist?

Beyond the definition of disability in the Equality Act, existing definitions covering neurodivergent people and people with learning disabilities in Scotland are not in law.

We have previously used various definitions for neurodivergent people and people with learning disabilities. Whilst none of these have been placed into law, this Bill could provide an opportunity to do so:

Our Keys to Life Strategy^[70] defines learning disability as:

"a significant, lifelong, condition that started before adulthood, which affected their development and which means they need help to: understand information; learn skills; and cope independently."

The Scottish Commission for Learning Disabilities uses a similar definition:

"a learning disability is significant and lifelong. It starts before adulthood and affects a person's development. This means that a person with a learning disability will be likely to need help to understand information, learn skills and live a fulfilling life. Some people with learning disabilities will also have healthcare needs and require support to communicate."

The Scottish ADHD Coalition defines ADHD as:

"a neuro-developmental disorder which interferes with the way a child develops in, and interacts with, his or her environment. ADHD is a long term disorder which in most cases persists into adulthood."

The FASD Network UK defines Fetal Alcohol Spectrum Disorder as a term used to describe the permanent impacts on the brain and body of individuals prenatally exposed to alcohol during pregnancy. It can result in a range of physical, mental, emotional and behavioural impacts.

The National Autism Implementation Team identifies neurodivergence as cogitative (brain) functions that fall outside of what is seen/perceived by society to be 'normal'.

Our National Neurodevelopment Specification^[71] provides the following definitions:

"Neurocognitive functions are selective aspects of brain functions – the ability to learn and use language, the ability to regulate attention, emotions, impulses (including movements and spontaneous utterances), social behaviours, and process sensory stimuli. Like height, these traits may be significantly genetically influenced, and are present from birth. Like height, the statistical normal range changes, dependant on age. The societal norm for a selective neurocognitive function is defined by the general population and may be variably and narrowly defined."

"A Neurodevelopmental disorder is a term reserved for those who present with a 'functional' impairment in day to day life due to difference in one or more neurocognitive functions which lie at the extreme of, or outwith the normal range."

"Neurodivergent describes individuals where a selective neurocognitive function falls out with the prevalent range."

With regards to clinical guidance, the International Classification of Diseases 11^th edition (ICD 11) is established by the World Health Organisation and defines what medical staff are looking for in relation to conditions which require care, support and potentially treatment. An example from it is the definition of 'autistic spectrum disorder':

"Autism spectrum disorder is characterised by persistent deficits in the ability to initiate and to sustain reciprocal social interaction and social communication, and by a range of restricted, repetitive, and inflexible patterns of behaviour, interests or activities that are clearly atypical or excessive for the individual's age and sociocultural context."

What can the LDAN Bill do?

There are 3 different potential approaches for the Bill, as follows.

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.

This is a broad term that can encompass both innate differences, such as autism and dyslexia, and acquired alterations to brain functioning such as people with an acquired brain injury.

'Neurodivergent' and 'neurodivergence' are therefore 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 dyslexia, dyspraxia and dyscalculia, autistic people and people with Down's Syndrome, ADHD, and FASD.

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.

Finally, 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.^[72]

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, under this approach, if a condition was not specifically listed and defined then that population would be excluded and so would not benefit.

This is why it may be important for the Bill to 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 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?
• Which of these proposals do you not agree with (if any), please tell us why?
• Is there anything else that we should consider in relation to this topic?