Learning Disabilities, Autism and Neurodivergence Bill: consultation

Introduction

"…We must ensure equality of opportunities for all – reaffirming our commitment to embedding equality, inclusion and human rights into everything we do.

We will use the powers of devolution to their maximum to deliver services and improve the lives of the people in Scotland… As a Government we will be unapologetic about supporting those in greatest need. We will use every power at our disposal to protect the vulnerable in our society." ^[2]

- First Minister, Humza Yousaf MSP

We know that people with learning disabilities and neurodivergent people can be amongst the most vulnerable and disadvantaged in our society. This needs to change and it is why the objectives for the Bill are to better respect, protect and champion the rights of these groups to deliver a fairer Scotland for everyone.

This consultation brings much needed focus to help us move towards a society where neurotypical and neurodivergent people, and people with learning disabilities, all have their needs met and their choices respected.

What do we know about neurodivergent people and people with learning disabilities?

Although detailed or comprehensive data collection and reporting on learning disabilities and neurodivergence is poor in some areas, from the data that is available we estimate that these groups comprise 10-15% of the population, with some conditions commonly co-occurring. The individual figures below are likely under-estimates. For example, the data that is available shows the following:

• The 2011 Census reported that 0.5% of Scotland's population have learning disabilities.^[3]
• The Scottish Government commissioned a study to assess the prevalence of autistic people which estimated that at least 1% of the population is autistic.^[4]
• However, autism diagnosis in children and young people is increasing year on year. In 2022, 3.6% of the school population identified as having additional support needs were autistic, indicating that the 1% estimate for adults is an under-representation.^[5]
• It is estimated that 3-4% of the UK population has ADHD.^[6]
• There are few reliable sources of data on FASD. However, the University of Salford published research in 2021 indicating that 1.8-3.6% of the UK population may have FASD, but that the prevalence rate may be higher.^[7]
• In terms of learning difficulties, it is estimated that up to 10% of people in the UK have dyslexia^[8], and 6% have dyscalculia^[9].
• Neurodivergence and learning disabilities often co-occur, for example:
• it is estimated that 37.2% of autistic people have a co-occurring learning disability;^[10]
• 50% of individuals with FASD are estimated to also have ADHD;^[11] and,
• ADHD and learning disabilities can also commonly co-occur.^[12]

There is good evidence of the significant inequalities and challenges that these groups experience. For example, research indicates that:

• People with learning disabilities in Scotland die on average 20 years earlier than the rest of the population, which is largely preventable.^[13]
• Adults with learning disabilities are twice as likely to die from preventable illnesses than the general population, and were over three times more likely to die from COVID-19.^[14]
• Autistic people die on average 16 years earlier than the general population.^[15]
• Autistic people are 9 times more likely to die by suicide. As many as 66% of autistic adults had thought about suicide during their lifetime, and up to 35% had planned or attempted suicide.^[16][17]
• People with FASD who are not diagnosed in early life are at high risk of having a lower life expectancy than their peers, estimated at 34 years.^[18]
• People with ADHD are five times more likely to attempt suicide which rises to 1 in 4 for women with ADHD.^[19]

In terms of family and community, research indicates that:

• 66% of autistic people in Scotland say that they feel socially isolated.^[20]
• Social isolation and loneliness remain a reality for many people with learning disabilities.^[21] 52% of people with learning disabilities occasionally, sometimes, or often felt lonely.
• Autistic people are bullied more frequently than non-autistic peers (46-96% prevalence rates).^[22]
• 5% of people with learning disabilities lived with a partner compared to 56% of the general population, and 3% were married compared to 47% of the general population.^[23]
• Between 40% and 60% of parents with a learning disability have their children removed from their care due to being assessed as unable to provide an adequate standard of parenting.^[24]

With regards to employment, it is estimated that employment rates are 4-8% for people with learning disabilities^[25] and 29% for autistic people,^[26] compared with Scotland's national employment rate of 82.5% for non-disabled people and 50.7% for disabled people.^[27] The Office for National Statistics has also reported that the employment rate for 'severe or specific learning difficulties' is 26.2%.^[28]

In terms of education, we know that 4.6% of exclusions in Scotland are of autistic learners, which is higher than the overall percentage of learners who are autistic (3.6%).^[29] The majority of applications to the Health and Education Chamber of the First-Tier Tribunal are consistently for autistic learners.^[30]

With regards to justice, research indicates that:

• Communication disorders among young offenders have a prevalence rate of 60-90%^[31].
• A Scottish Prison Service pilot carried out in 2016 showed that 39% of prisoners had a learning disability or difficulty.
• Whilst there is no reliable data on FASD prevalence within the prison population in the UK, FASD is thought to be overrepresented and under-recognised in criminal justice settings.^[32] International research indicates that youths with FASD are 19 times more likely to be in prison than youths without FASD, and, our stakeholders have consistently told us that people with FASD are over-represented in the justice system.^[33]
• Global rates of gender-based violence suggest that 90% of women with learning disabilities have been subjected to sexual abuse, with 68% experiencing sexual abuse before turning 18.^[34]
• Those higher in autistic traits are 1.4 times more likely to have experienced childhood sexual abuse compared to those with few autistic traits (40% vs. 27%), and 1.7 times as likely to have experienced physical or emotional abuse (24% vs 14%).^[35]

The Scottish Government and COSLA's Towards Transformation Plan^[36] highlighted that people with learning disabilities and autistic people continue to face stigma when trying to access services to which they are entitled. Such stigma can lead to exclusion from services, or else unequal treatment when services are provided.

For example, we know that stigma concerning autism and mental health has resulted in some autistic people not receiving support to which they are entitled; as one autistic person put it, "GPs [can blame] the mental health of people on their autism and so [do] not [provide] support". Another autistic person reported that their "school just thinks I'm being over-dramatic, they don't take me seriously, very patronising. They know I'm autistic and they just use it as an excuse".

Elsewhere in the UK, large numbers of autistic people are targeted because of autism-related stigma. For example, of autistic respondents to a UK government review of the Autism Act 2009,^[37] 87% had 'sometimes' or 'often' experienced bullying, 75% had 'sometimes' or 'often' experienced discrimination, and 52% had 'sometimes' or 'often' experienced harassment.^[38]

People with learning disabilities face both social and health inequalities, which place them at an increased risk of mental health problems.^[39] A contributing social factor is stigma: negative stereotypes held by society about people with learning disabilities, which often lead to prejudice.

We know that just under a third (32%) of respondents in the 2017 British Attitudes Survey^[40] thought that disabled people are not as productive as non-disabled people. This belief may be a factor which contributes to the disparity in employment rates between people with learning disabilities and the general population.^[41]

We also know that stigma can lead to hostility towards people with learning disabilities, in some circumstances potentially contributing to abuse.^[42] The Scottish Commission for People with Learning Disabilities (SCLD) has produced a short film that documents people with learning disabilities' experiences of hate crime.^[43] We also know that, in England and Wales in the year ending March 2019, disabled people were more likely to be subjected to physical violence than non-disabled people, and that disabled women were more than twice as likely to have experienced domestic abuse than non-disabled women.^[44] Whilst we do not know the exact statistics relating to people with a learning disability within this dataset, we can extrapolate both from this dataset and from what we know otherwise about the experiences of people with learning disabilities that they, too, are more likely to experience violence and criminal actions.

For example, the SCLD research suggests that 1 in 3 adults with learning disabilities experienced sexual abuse in adulthood and that the UK had a prevalence of 34.1%. International studies demonstrate that people with a learning disability may be 10-12 times more likely to experience sexual assault than their non-disabled peers.^[45]

We also know that people with learning disabilities are often excluded from teaching in school and other settings about Relationships, Sexual Health and Parenthood.^[46]

People with learning disabilities and neurodivergent people can think differently and see and experience the world differently. That shouldn't cause exclusion, stigma, stereotyping, abuse, aggression and disadvantage. However, these groups can be among the most stigmatised, vulnerable and socially excluded in our society. As one LEAP member put it:

"I was not born vulnerable. I have been made vulnerable because of the attitude and behaviour and prejudices of others throughout my whole life.

Whether it's the bus conductor who gets irritated with me because I just need a bit more time to get to my seat, or the school teacher who placed me at the back of the class because I was 'holding everyone back', or the staff in my GP practice who think I'm a pain because I keep contacting them – they just see my learning disability."

Sadly, stigma can become internalised in the people who experience it. This is associated with higher levels of psychological distress and lower quality of life.^[47][48]

We also know that stigma has an intersectional element. This means that attitudes and assumptions concerning things like ethnicity, culture, gender identity, and the like can interact with and influence disability stigmas, making things even harder for neurodivergent people and people with learning disabilities to achieve respect within their societies and cultures, and to access the services that they need. Attitudes and assumptions prominent within certain social and cultural groups can also influence disability stigmas. For example, we know that 'particular groups with higher levels of religious faith may be more likely to stigmatise.^[49]

Our approach to developing proposals with neurodivergent people and people with learning disabilities

In our 2021 Programme for Government,^[50] we committed to carrying out scoping work for a Bill. That work took place between May and July 2022 and involved a series of events to consider how people with lived experience viewed the Bill and to discuss potential key elements, including the role of a Commission or Commissioner. We ran 30 different events with 18 different stakeholder organisations, including people with lived experience of learning disabilities or neurodivergence. An analysis of the findings from our scoping work was published earlier this year.^[51]

We have been committed to taking a human rights based approach to ensure that this consultation and the proposals contained within it were fully co-designed with people with lived experience.

To enable this, we established three Bill panels to support the development of consultation options. This included a Lived Experience Advisory Panel (LEAP), a Stakeholder Panel; and a Practitioner Panel.

The LEAP includes 25 people with various conditions including learning disabilities, autism, ADHD, Dyslexia, Down's Syndrome and other conditions, with some members having more than one condition. LEAP members are a diverse, passionate, knowledgeable and intersectional group. Some are also parents to children with learning disabilities or neurodivergence.

The Stakeholder Panel includes over 40 office bearers from a variety of interested third-sector organisations, including Disabled People's Organisations.

The Practitioner Panel includes representation of professionals from: from Social Work Scotland, Education Scotland, NHS Scotland (various), the Mental Welfare Commission, Police Scotland, the Royal College of Psychiatrists, the Law Society of Scotland, and others.

Individual meetings with the three panels took place from February to September this year. Whilst the scoping report informed our Panels' discussions initially, the LEAP has led the way on the themes that were to be explored in this consultation, and the resulting proposals.

We have been committed to a partnership approach with the LEAP and to find new ways of working together for genuine and ground breaking engagement in the policy process. This has included the LEAP co-designing and co-producing this consultation paper.

How the Bill fits with the other rights-based work we are progressing

The Bill is part of a system of rights-based work that we are currently progressing. In developing this consultation and its proposals we have aimed not to duplicate or add more complexity to this landscape. Where this other work is relevant to the themes in this consultation, it is noted and discussed at the individual sections. This Bill can therefore be seen as working in harmony with this other work, whilst providing proposals to bring more focus to people with learning disabilities and neurodivergent people within that work where it may be needed.

The other pieces of rights-based work we are currently progressing includes:

• International human rights

Whilst the UK has signed and ratified various international human rights treaties and conventions, which means the UK has consented to be bound by them, these rights are not directly enforceable in domestic law. This is because internationally recognised human rights are not enshrined in Scots law. This means that the rights in these unincorporated international human rights instruments cannot be relied on in Scotland to challenge public bodies in court or by regulators if there is a failure to take actions to uphold these rights or if actions are taken to undermine them.

We are, however, progressing the following two pieces of legislation:

• a Human Rights Bill for Scotland, which will be introduced during the current Parliamentary year. A consultation on proposals for the Human Rights Bill closed on 5 October 2023. The Human Rights Bill will incorporate a wide range of internationally recognised economic, social and cultural human rights belonging to everyone in Scotland, into Scots law within the limits of devolved competence.

The aim of incorporating these rights in the Bill is to help better secure a life of dignity for everyone, particularly those who are most marginalised and disadvantaged. We want the Bill to help tackle inequality by improving how public authorities consider human rights and protected groups (including disabled people) when delivering services in areas devolved to Scotland, such as health, education and housing.

The proposals for the Bill are ambitious and we are seeking to provide a single framework in which all rights can be read, applied and interpreted together against the relevant international law from which they come. The proposals in the Bill would mean that for the first time in our domestic legal framework, duty bearers have to comply with the rights in the International Convention on Economic, Social and Cultural Rights (ICESCR) and the right to a healthy environment, and actively consider the rights in the Convention on the Rights of Persons with Disabilities (CRPD) (alongside other treaties for the protection of women and those who experience racism) when making decisions and delivering public services. The model of incorporation differentiates between the treaties given the overarching need to provide a framework which is coherent, consistent and competent – although the Scottish Government is committed to considering its approach to CRPD rights whilst balancing those overall aims.

The rights and duties will be supported by strengthened improvements for how everyone can access justice when rights are infringed and robust planning and reporting duties on public authorities. These will be crucial in ensuring the Bill can provide the transformative culture change for human rights based delivery of public services that we want it to.

Details of these treaties and proposals are in the Human Rights Bill consultation document.^[52]

• the United Nations Convention on the Rights of the Child (UNCRC) (Incorporation) (Scotland) Bill. This Bill will, if passed, incorporate the UNCRC into Scots law within the limits of devolved competence.^[53] The UNCRC is an international human rights treaty that covers all aspects of children's lives. The Bill sets out several things to make sure that incorporation works, such as that the Scottish Government must publish a Children's Rights Scheme to show how they are meeting UNCRC requirements and explain future plans for children's rights. Certain listed authorities must report every three years on what they have done to meet the UNCRC requirements and give better or further effect to children's rights.

The UNCRC applies to everyone under the age of 18. It recognises that all children and young people have rights and contains four underpinning principles around: non-discrimination; the best interests of the child; the right to life, survival and development; and respect for the views of the child. More specifically, Article 28 recognises that children and young people have the right to education on the basis of equal opportunity. This includes both primary and secondary education and includes the option of technical or vocational training.

We have already provided non-statutory guidance to public authorities on giving effect to the UNCRC.^[54]

Given that these two Bills will aim to incorporate high-level treaty-based rights, the LDAN Bill could potentially add to the increasingly developing rights system, providing more focus on people with learning disabilities and neurodivergence and more specific legal rights and obligations in respect of these specific populations, in specific circumstances.

• The establishment of a National Care service (NCS) and the National Care Service (Scotland) Bill. We are committed to delivering the NCS to improve quality, fairness and consistency of provision that meets individuals' needs. It is part of our broader work to provide sustainable person-centred public services that tackle inequalities. We are working with people with lived experience and frontline workers to co-design the detail of the NCS. Services will continue to be planned, designed and delivered at a local level, with input from those with lived experience, creating a person-centred, outcome-focused approach to care.
• The Mental Health and Capacity Law Reform Programme. Earlier this year, we published a response^[55] to the independent Scottish Mental Health Law Review (SMHLR).^[56] The SMHLR was tasked with considering ways to better realise and protect human rights through our mental health, incapacity and adult support and protection legislation. It also looked at ways to remove barriers to care and support for people currently covered by the legislation. The Review's final report recommended a series of changes to legislation, policy and practice.

In our response, we committed to establishing a new Mental Health and Capacity Law Reform Programme to co-ordinate and drive further change and improvement over time in line with the Review ambitions. This programme will modernise our legislation to enhance the protection of people's rights. It will also seek to bring about improvements across mental health services and strengthen accountability for upholding and fulfilling human rights.

• The Public Sector Equality Duty (PSED) Review. The Equality Act 2010 ("Equality Act") provides a legal framework to protect the rights of individuals and advance equality of opportunity for all. Section 149 places a duty on public authorities, and others who exercise public functions, to have due regard to the need to:
  • eliminate discrimination, harassment and victimisation and any other conduct that is prohibited under the 2010 Act;
  • advance equality of opportunity between persons who share a protected characteristic and those who do not;
  • and to foster good relations between persons who share a protected characteristicand those who do not.

This is known as the Public Sector Equality Duty (PSED).^[57]

The Scottish Ministers have used their available powers to encourage equal opportunities to support compliance with PSED by placing detailed requirements on Scottish listed public authorities through the Equality Act 2010 (Specific Duties) (Scotland) Regulations 2012 ("the SSDs").

The SSDs support Scottish listed public authorities to improve performance of the PSED by requiring them to: report progress on mainstreaming equality; propose and publish equality outcomes; assess policies and practices from the perspective of equality; and publish employee information on pay and occupational segregation.

Responsibility for oversight of compliance with the Equality Act, including compliance with the SSDs, rests with the Equality and Human Rights Commission (EHRC). The EHRC has issued guidance on how the SSDs should be applied in practice.

The SSDs aim to help public authorities to meet the PSED. In order to demonstrate due regard to the matters set out above, institutions must do the following:

• Report on progress on mainstreaming the PSED into all functions
• Develop and publish a set of equality outcomes that cover all protected characteristics (or explain why not all protected characteristics are covered)
• Assess the impact of policies and practices against the needs of the PSED
• Gather and use information on employees
• Publish gender pay gap information
• Publish statements on equal pay for gender, race and disability
• Have due regard to the PSED in specified procurement practices
• Publish information in a manner that is accessible

We are reviewing the PSED in Scotland and are phasing in changes to improving the regulatory regime. Our next steps include delivering on two key regulatory changes:

1. revising the current pay gap reporting duty to include reporting on ethnicity and disability pay gaps; and

2. introducing a new duty on listed public bodies in relation to their use of inclusive communication.

Further legislative changes will be considered over the longer-term.

• Getting it right for every child (GIRFEC). With the right support at the right time, every child and young person in Scotland can reach their full potential. GIRFEC^[58] is our national approach to promoting, supporting and safeguarding the wellbeing of all children and young people, providing a consistent framework and shared language which puts their rights and wellbeing at the heart of the services that provide support to them and their families.

The GIRFEC National Practice Model seeks to help practitioners consider ways they can help improve wellbeing for a child or young person. It provides a framework to structure and analyse information consistently to take account of a child or young person's needs, identify their strengths and any challenges they face, and consider the most appropriate offer of timely, holistic support. Children, young people and families should be supported to fully participate in discussions as the assessment of need is made; and be at the heart of any planning, including receiving accessible information on the decisions reached and why.

• The Promise. Our ambition is for all children to grow up loved, safe and respected so that they can reach their full potential. Keeping The Promise will ensure this ambition is turned into a reality for all care experienced children and young people. Our Implementation Plan^[59] sets out the range of actions across the different parts of Government that contribute towards Keeping the Promise by 2030.
• Getting it right for everyone (GIRFE). Getting it Right for Everyone (GIRFE) is a proposed multi-agency approach to health and social care support and services from young adulthood to end of life care, building on GIRFEC. ^[60] It is currently being co-designed. Our GIRFE approach will help inform whole system working, define the adult journey and respect the role that everyone involved has in providing support planning and support. GIRFE will put the person at the heart of every decision about their own health and social care.

How the consultation sections are set out

Each of the sections in this paper is focussed on one main topic. Most sections are set out in the following way:

What we heard

Here we set out what we heard about the topic from our scoping report, stakeholders, and the research that is available to us or that we have undertaken.

What did LEAP think?

Here we set out what the LEAP told us about the topic and their lived experience of it. LEAP's suggestions for change are also included.

Where do we want to get to?

Here we set out our ambitions and vision for the outcomes we want to see.

What happens now?

Here we set out what rights and duties already exist in relation to the topic, as well as current practice. This information is included because LEAP members told us that without knowing what rights and duties may already exist, or what systems and processes are currently in place, they would not be informed enough to engage and participate to their full potential, or to provide meaningful and informed responses. We agree with this and so have set out detailed information for each topic to enable respondents to this consultation to be more informed and able to participate.

What can we do about it?

Here we set out what we and our partners are already doing to improve things for people with learning disabilities and neurodivergent people.

What can the LDAN Bill do?

Here we set out proposals for what the Bill might be able to do to improve things for people with learning disabilities and neurodivergent people.

What do you think?

Here we ask questions for you to respond to, so that we can understand your views.