Learning Disabilities, Autism and Neurodivergence Bill: consultation

Part 4: Accountability

What we have heard

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 did LEAP think?

When discussing options for accountability, the majority LEAP members decided that a new Commission model would be their preferred option because:

• They liked the idea of a board with several people who could take lead responsibilities for different groups of people with learning disabilities and other neurodivergent people. They thought it was important that a Commission should be overseen by a board that included people with lived experience of learning disabilities and neurodivergence;
• They wanted a body able to conduct investigations on individual cases;
• Parents and carers could also be represented without this diluting the views of neurodivergent people and people with learning disabilities;
• A Commission could have formal responsibilities to promote and secure rights and it was important for this to have legislative backing.

Some members thought it would better to have a specialist within an existing Commission or Commissioner body to prevent neurodivergent people and people with learning disabilities being seen as "other".

The LEAP wanted to emphasise that neurodivergent people and people with learning disabilities should be involved in the leadership and governance of any new or existing Commission or Commissioner. They thought it vital that people are able to advocate on behalf of themselves and their communities at every level of representation. This could in turn help ensure that the actions and advice of any new or existing body are fully informed by the experiences of the people whom it aims to help.

The LEAP also thought that several of the options below could be selected alongside each other. They thought that, for example, introducing champions and advocates into public bodies could complement the establishment of a new Commission. They also thought that a Commission could issue national guidance and set national standards, which is one of the other options that we list below. However, they acknowledged that potential funding limitations could limit the selection of multiple options alongside each other.

Where do we want to get to?

• Neurodivergent people and people with learning disabilities know what their rights are
• Neurodivergent people and people with learning disabilities have confidence that their rights will be respected and upheld when they need supports or services
• Public bodies providing supports, services or information always make sure they are accessible to neurodivergent people and people with learning disabilities and respect their human rights
• When rights are not respected there is a clear route to redress and improvement.

What happens now?

Earlier this year, we conducted and published research on the role of existing Commissions and Commissioners.^[383]

We agreed that our research would focus on in-depth interviews with five commissions, commissioners or partners. Our research sets out more detailed information about these existing Commissions and Commissioners in Scotland. They all include neurodivergent people and people with learning disabilities in their remit:

• the Equality and Human Rights Commission (EHRC)
• the Scottish Human Rights Commission (SHRC)
• the Scottish Public Services Ombudsman (SPSO)
• the Mental Welfare Commission for Scotland (MWCS)
• the Children and Young People's Commissioner (CYPCS)

Our research paper sets out more about the powers and duties of these bodies and their views on the effectiveness of their powers.

What can we do about it?

We can explore using the Bill to make better provision for neurodivergent people and people with learning disabilities to know about their rights and to be able to get support where those rights are not being protected or respected. We have set some of this out in the sections about accessible information and advocacy.

The Bill can also 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 below. This will be in addition to the existing roles of charities and disabled peoples organisations and would not replace them. The options include the following:

1. Create a new Commission or Commissioner;

2. Provide better resourcing and additional duties for an existing Body;

3. Create Champions and Advocates within Scottish Public Bodies;

4. Provide better resourcing for existing Disabled People's Organisations who support neurodivergent people and people with learning disabilities in ensuring that their rights are upheld;

5. Supporting good practice through standards, guidance and practical tools and investing in co-production.

Option 1: A new Commission or Commissioner

What would this mean?

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 could be set out in the Bill. The Bill can also set out how the Commissioner or Commission would be appointed and could make sure that neurodivergent people and people with learning disabilities were involved in the appointment process.

There are already a number of Commissions and Commissioners in Scotland which have remit to consider people with learning disabilities and neurodivergent people.

These include the Children and Young People's Commissioner. This Commissioner does a number of things, including:

• Telling people in Scotland about the rights children and young people have and helping them understand what they mean in practice;
• Looking at what powerful people in Scotland do and the laws they pass, and raising concerns with them when they don't respect children and young people's rights;
• Telling people who work with and for children and young people how to get better at respecting human rights; and
• Investigating some issues affecting children's human rights.

It also includes the Scottish Human Rights Commission (SHRC), which can:

• Publish advice, guidance and ideas;
• Conduct research and provide education and training;
• Review and recommend changes to law, policy and practice;
• Conduct inspections in places of detention;
• Conduct inquiries (under some strict conditions); and
• Intervene in civil proceedings before a court in certain circumstances.

The SHRC does not currently have the power to:

• Assist in claims or legal proceedings or
• Provide advice, guidance or grants linked to proceedings.

However, as part of our consultation on a new Human Rights Bill for Scotland, we are considering whether the SHRC should have additional powers. These potential new powers are discussed in greater detail below under Option 2 in this section.

The Equality and Human Rights Commission's (EHRC) also has remit to consider people with learning disabilities and neurodivergent people. Its role is to promote equality and diversity, enforce equality laws and promote and protect human rights by encouraging and promoting good practice and promoting mutual respect across Great Britain. In Scotland its functions include:

• Producing statutory guidance
• Conducting inquiries - into any topic related to equality, diversity and human rights
• Conducting investigations – where it is suspected an unlawful act has been committed
• Making applications to court including judicial reviews and interventions

HumMore information can be found in our published research on the role of Commissions and Commissioners as mentioned above.

What could a Commission or Commissioner do?

Several organisations have suggested powers that a Commission or Commissioner might have. They have also made suggestions about how a new body might work alongside existing Commissions and Commissioners in Scotland. We have set out below what the powers and duties of a new body might be. It could have all or some of these powers and duties:

• Consult and involve neurodivergent people and people with a learning disability
  • Involvement in the appointment process for a Commission or Commissioner;
  • Ask neurodivergent people and people with learning disabilities what issues they would like the Commissioner to address;
  • Establish and work with an advisory group of neurodivergent people and people with learning disabilities.
• Promote human rights
  • Provide information
  • Provide advice and guidance on specific issues
  • Provide education and training
  • Promote good practice
• Conduct research
  • Into specific issues where there is limited information
  • Into issues where people feel disadvantaged
  • Publish information on, for example, national numbers on people with learning disabilities alongside numbers of neurodivergent people generally and people with specific neurodivergent conditions
• Hold the Government to account
  • Review areas of law, Government policy and practice
  • Publish their opinion
  • Provide evidence to the Scottish Parliament
  • Make recommendations
• Hold public bodies to account by conducting inquiries and formal investigations
  • Into specific issues, supports or services
  • Have powers to compel the production of information held by public bodies and interview their office holders
  • Publish reports of inquiries and investigations
  • Make recommendations
• Power to bring court proceedings
  • Have powers to access information linked to the case
  • Recommend penalties for public bodies, such as fines
• Publish an annual Strategic Plan and financial accounts
  • Co-produce this with neurodivergent people and people with learning disabilities;
• Collate and publish data and report regularly to the Scottish Parliament on key outcomes for neurodivergent people and people with learning disabilities

Potential Benefits

• Raise the profile of people with learning disabilities and neurodivergent people in our society and advocate for changes in attitudes and behaviours as well as systems and services.
• Provide a high-profile single point of contact for neurodivergent people and people with learning disabilities across Scotland, advocating for their rights.
• Specialise and keep up with the latest language, research, and attitudes. These can change quickly.
• Provide a new resource in Scotland to help target and address areas where rights are not being met and hold Government and public bodies to account.

What additional benefits might a Commission provide?

Because a Commission consists of multiple people, it could potentially represent a broader range of views more easily than a Commissioner. This might include a Board where each member could specialise in one area, such as learning disabilities, autism or ADHD, for example. Those members might be able to also act as individual champions for people in different fields. We could explore how neurodivergent people and people with learning disabilities could be represented on the Board.

Potential Challenges

• There could be duplication or a need for agreements with existing bodies. This is because there are already Commissioners and Commissions who, although they do not specialise in neurodivergence or learning disabilities, include these groups within in their remit. This includes the SHRC, EHRC and the Children and Young People's Commissioner. However, agreements could be put in place between a new Commission or Commissioner and existing ones about how they would work together.
• The Scottish Parliament would need to be persuaded that there is a need for a new public body.
• A new Commission or Commissioner would have a specific remit covering all neurodivergent people and people with learning disabilities. This means covering a wide range of issues and also representing families and carers.
• If a new public body has duties to conduct investigations and/or take some individual cases, this might need a lot of time and resource and could divert it from other activities. The same might apply to a power to provide advice and guidance to individuals. It is not guaranteed that a new body would have these powers and a case would need to be made for them and adequate funding provided.
• A new Scottish body can only operate within devolved powers. This might limit it to some extent, for example on equalities issues, but this would apply to any of the accountability mechanisms that could be created by this Bill.
• Some people feel the funding for a new body could be more effective spent in a different way to benefit people with learning disabilities and neurodivergent people.

Option 2: Better resourcing and additional duties for an existing body

What would this mean?

Neurodivergent people and people with learning disabilities already come within the remit of the SHRC, the EHRC Equality, 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. They also have limited opportunity to specialise in some areas. We know that the needs of neurodivergent people and people with learning disabilities are often not being met so whilst existing bodies may have been able to do many good things we know that it is not always possible to prioritise this within their overall duties.

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 people with learning disabilities and neurodivergent people.

We would need to decide which body could best do this. The Bill could amend the legislation that established the body chosen.

We recently consulted on proposals for a new Human Rights Bill for Scotland including exploring changes to the powers of the SHRC to include: ^[384]

• Powers to bring or intervene in civil proceedings under a Human Rights Bill; and
• An investigatory power which allows for accountability for systemic issues relating to the rights in the Bill (relating to civil matters).

In addition, it is proposed that scrutiny bodies (including the Scottish Public Services Ombudsman (SPSO)) be required to inform the SHRC of any systemic human rights issues they come across.

The SHRC itself has proposed introducing a rapporteur model in a recent report.^[385] This means some small teams within the SHRC having responsibility for a specific dedicated issue. They have suggested that one of those dedicated teams could be for disabled people. This would include, but not be limited to, neurodivergent people and people with learning disabilities. Each Rapporteurship would be proactive in securing rights and would appoint highly qualified people to act in this role.

Potential Benefits

• Existing bodies have experience and powers that can help them uphold the rights of neurodivergent people and people with learning disabilities.
• This option could prevent the duplication and overlap of powers and remit that creating a new Commission/er might bring. It may reduce the likelihood that lots of new Commission/ers will be set up in future.

Potential Challenges

• Existing bodies already have a lot of work to do. It is possible that, even with additional resources, they would not be able to focus, or give the focus that is needed, on the rights of neurodivergent people and people with learning disabilities as much as they would like.
• Existing bodies may not have a lot of experience of working with people with learning disabilities and neurodivergent people. They may have to do a lot of learning first before they could effectively uphold their rights.
• There may still be gaps in the powers of existing bodies that some people may like a commission or commissioner to have.

Option 3: Champions and Advocates within Public Bodies

Scotland has many public bodies whose roles are central to the experiences that people with learning disabilities and neurodivergent people 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.

What would this mean?

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 NHS, the Police and many other bodies. Currently, many public bodies will have individuals appointed to their Boards to provide expertise in a variety of areas.

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.

Potential Benefits

• These champions and advocates would act as representatives of people and could quickly tell public bodies what they need to do better in live time.
• Having different champions and advocates within different public bodies would allow those champions and advocates to focus on issues specific to those public bodies.
• This option could work alongside other options, including a new or existing Commission or Commissioner. The champions and advocates could make sure change happens at a local level, while the Commission or Commissioner makes sure that it happens at a national level.

Potential Challenges

• It would not necessarily be possible to place a legal duty on public bodies to enact the suggestion of the champions and advocates.
• Champions and advocates would have to speak up on behalf of lots of different neurodivergent people and people with learning disabilities. This could be an overwhelming task for them, and they could overlook some people or groups due to their broad remit.
• The role would be focussed on specific bodies. There would be no overall consistent national approach or governing body looking at accountability unless a Commission or Commissioner was also established.

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, 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 in Scotland (there are several) and People First, which is an organisation led by people with learning disabilities.

DPOs try to help public and private bodies including local authorities, healthcare providers, education providers, people working in justice, and the Scottish Government. They help by explaining what their communities want and need.

What would this mean?

This option would mean better resourcing of existing DPOs, specifically those that are led by and support people with learning disabilities and neurodivergent people, to allow them to increase support and advocate for the rights of neurodivergent people and people with learning disabilities.

Although we 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 as disabled people (including people with learning disabilities and neurodivergent people).

Potential Benefits

• Giving more money and support to certain DPOs could allow them to grow and reach more people within the communities they represent.
• DPOs are connected to their communities and could develop direct and deep understanding of their problems.
• DPOs ensure that people's voices come first and do not need to be represented by anyone else.

Potential Challenges

• DPOs do not have any legal powers of enforcement. They can advise organisations, but those organisations do not need to listen to them.
• Some DPOs operate only in a specific geographical area. They can identify and talk about local issues, but they may struggle to reach everyone in their communities across all of Scotland.
• In Scotland the only existing DPOs established specifically to support people with learning disabilities and other neurodivergent people are APOs that focus on autistic people, and People First who support people with learning disabilities. This means that there are no DPOs representing other neurodivergent groups such as people with ADHD, FASD, and people with learning difficulties like dyslexia. Although many neurodivergent people may have more than one condition, this means that not all people would be represented through this route.
• Furthermore, differences between DPOs in, for example, the interpretation and application of relevant guidance, or even in the number of staff they have, could mean that people with learning disabilities and neurodivergent people receive different levels and quality of support depending on where they live in Scotland.
• If DPOs take different approaches to data collection regarding the people they support, it may result in the production of data sets that cannot be amalgamated to form a national picture across Scotland. However, this could be mitigated by the Scottish Government providing guidance on any data sets that would need to be collated and published, or finding an alternative solution for national data collection.
• Whilst bodies established through legislative means generally have accountability built in, DPOs would not be subject to the same level of accountability or scrutiny. They are accountable to their members, but not every neurodivergent person and person with learning disabilities in Scotland is a member of a DPO.

Option 5: Supporting good practice through standards, guidance and practical tools and investing in co-production

What would this mean?

This could involve us working continuously with people with lived experience (like the 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. 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.

We already do some of this kind of work, however, there are still many serious issues experienced by people with learning disabilities and neurodivergent people. We have worked with autistic people and people with learning disabilities over the last two years to identify improvements needed around mental health.

Potential Benefits

• We could set standards that are expected to be followed by public bodies across Scotland, meaning that they would be consistent between council areas and providers.
• The design of standards, guidance, and practical tools could be done with a wide range of neurodivergent people and people with learning disabilities, meaning that lots of different groups could influence them.

Potential Challenges

• Designing these standards, guidance, and tools could take a long time, and would have to be updated regularly. This means that they may not be of immediate help.
• We already deliver some of this work and will continue to do so, but this approach does not provide a means to enforce best practice via legal means or assure any additional accountability from the organisations we work with.
• Some people worry that setting standards and issuing guidance without an enforcement mechanism could lead to standards and guidance being treated as a 'tick box exercise'. They worry that nothing would change for the better because of this.