Learning Disabilities, Autism and Neurodivergence Bill: consultation

Section 3: Inclusive Communications

What we heard

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 supports 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. Using inclusive communication is essential because it recognises that different people use many different ways of understanding and expressing themselves. 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.

The profound importance of using inclusive communication was clear during the COVID-19 pandemic, when vitally important public information needed to be quickly available and understood by all. The pandemic exacerbated the disproportionate impact on individuals and groups who already experience disadvantage.

The Scottish Parliament's Equalities and Human Rights Committee 2021 Report^[93] on the impact of the pandemic on equalities and human rights, noted that respondents felt the needs of disabled people were not considered in the information and guidance provided by the Scottish Government and public services, which had direct consequences on people's lives.

What did LEAP think?

• LEAP members often feel like they aren't respected, and can feel angry and frustrated when interacting with public authorities and the professionals who work for them.
• LEAP thought that public authorities in Scotland do not meet their legal obligations around inclusive communications in practice and need to do more.
• LEAP members often commented on negative experiences accessing healthcare, feeling that:
• Inclusive communications are crucial when interacting with doctors – for example, autistic people may not be able to express how bad their pain is.
  • doctors who rely on body language and tone when making diagnoses can miss important symptoms if they aren't expressed in the expected way.
  • the rules for phoning in to get a GP appointment are confusing and complex and create a lot of anxiety with people being worried they will be "scolded" if they get it wrong.
  • The right to request alternative forms of communication should be upheld in every situation.
• It can be difficult to interact with professionals and other people working in public authorities (such as doctors, police and social workers) as they don't have enough understanding of neurodivergence and learning disabilities. LEAP would like those professionals to have a better understanding of their different communication needs, and their rights to accessible information.
• The information provided by public bodies and service providers is often difficult to read and understand, unclear or unnecessarily complex. LEAP would like alternative formats to be automatically provided wherever possible, rather than the responsibility being on them to request alternative formats. This includes easy-read versions.
• During the COVID pandemic, public authorities and services were able to offer a variety of communication methods when accessing services, such as online and telephone appointments. LEAP members felt this made services more accessible to them. They would like this to continue to be best practice and seen as a way that allows them to access their rights around inclusive communications.

One of our LEAP members told us that:

"I struggle to make appointments with my doctor because the rules for phoning in are so confusing and complex. There are certain times and days you have to phone to get appointments, but nobody explains this to you. I'm scared to be scolded for phoning at the wrong time, so I often don't even try."

Where do we want to get to?

We are committed to improving and embedding inclusive communication proportionately within the Scottish Government and across the public sector. In March 2021, we published our suite of Equality Outcomes for 2021-25 under the Scottish Specific Duty Regulations (SSDs),^[94] which focus on tackling significant inequalities in society. The SSDs are discussed further below. One of those outcomes is focused on inclusive communication and states:

"By 2025, inclusive communication will be embedded in the approaches of public bodies, with an increased proportion of people in Scotland reporting that their communication needs are being met when accessing public services"^[95]

For people with learning disabilities and neurodivergent people, we want:

• A culture where inclusive communication and accessible information is considered the norm, thought about proactively by public authorities, and provided automatically in reasonable circumstances without the need to request alternative formats.
• Professionals who work for public authorities and service providers are knowledgeable and confident when communicating with a range of neurodivergent people and people with learning disabilities.
• When inclusive information is not automatically provided, it is easy for neurodivergent people to request alternative formats, methods of communication and adaptations that work best for them as individuals.
• Neurodivergent people, and people with learning disabilities, are able to communicate with professionals who work for public authorities and service providers and feel heard, respected and understood.

What happens now?

Inclusive information and communication is promoted through various pieces of legislation and policy, as follows.

The Equality Act 2010 ("the Equality Act")

The Equality Act makes it unlawful for public authorities and others to discriminate against, harass or victimise employees and people who use services. It requires public authorities and others to make reasonable adjustments for disabled people to avoid disadvantage and is clear that reasonable adjustment can include provision of information in an accessible format.

The Public Sector Equality Duty (PSED) – Scottish Specific Duties Regulations

As discussed in the introduction, we have been reviewing the effectiveness of the PSED regime and, in March 2021, published a report which identified issues and areas for improvement. We then made commitments to embed inclusive communication, and consulted on ambitious proposals for change relating to the SSDs, as well as the wider environment for implementation so that the regime can be made tangible for everyone in Scotland.

We are introducing new SSDs to ensure inclusive communication is embedded proportionately across the work of listed authorities when they are communicating with the public.

This inclusive communications duty would sit alongside Scottish Government's other work to embed inclusive communication across the public sector, such as developing national standards, best practice, and a monitoring system for the effectiveness of this.

The Social Security (Scotland) Act 2018 ("the 2018 Act")

The 2018 Act^[96] contains an example of a specific duty being placed on a public authority regarding inclusive communication. Section 4 of the 2018 Act states that the Scottish Ministers must have regard to the importance of communicating in an inclusive way as part of their duty to keep under consideration what steps they could take to ensure that individuals are given what they are eligible to be given through the Scottish social security system.

The 2018 Act explains that 'communicating in an inclusive way' means communicating in a way that ensures individuals who have difficulty communicating (in relation to speech, language or otherwise) can receive information and express themselves in ways that best meet each individual's needs.

The Public Sector Bodies (Websites and Mobile Applications) (No. 2) Accessibility Regulations 2018^[97]

In general, these Regulations place a duty on public sector bodies, including the Scottish Government, to make sure that their website or mobile applications are accessible. This means making them perceivable, operable, understandable and robust to an internationally recognised accessibility standard. In general, a public sector body responsible for delivering public services via a website or app must:

• evaluate the accessibility of websites and apps;
• fix identified accessibility issues; and
• publish an accessibility statement that explains to users the level of accessibility of the website, or mobile app.

The Patient Rights (Scotland) Act 2011 ("the 2011 Act")

The health care principles as set out in the 2011 Act^[98] include reference to accessible information. Under section 5 of the 2011 Act, NHS bodies must, in performing their health service functions, uphold the health care principles in so far as they are relevant to the function being performed.

The Health and Social Care Act 2012 ("the 2012 Act") – Accessible Information Standard

Whilst the 2012 Act is not applicable in Scotland, Scottish Government Guidance to NHS Scotland on Learning Disability Employment provides that the Accessible Information Standard^[99], produced under section 250 of the 2012 Act, is seen as best practice for NHS Scotland Boards to help implement their duties under the 2010 Act. Whilst it is seen as best practice, it is not legally enforceable in Scotland.

The 2012 Act provides that organisations that provide NHS or adult social care have a legal duty, under section 250 of the 2012 Act, to make reasonable adjustments to improve access for disabled people.

Getting it right for every child (GIRFEC)

As noted in the introduction, GIRFEC^[100] 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 to help improve wellbeing for a child or young person. 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.

What can we do about it?

The Scottish Government is progressing two initiatives to better protect and uphold rights around inclusive communication and information, as follows.

International Human Rights

The Convention on the Rights of Persons with Disabilities (CRPD)^[101] includes article relevant to inclusive communications and Articles 9 and 21 are particularly relevant.

Article 9 requires that appropriate measures are taken to identify and eliminate barriers to accessibility including information, communication and other services. This includes physical barriers. Article 21 requires that all appropriate measures are taken to ensure that persons with disabilities can exercise the right to freedom of expression and opinion, including the freedom to seek, receive and impart information and ideas on an equal basis with others and through all forms of communication of their choice.

As noted in the introduction, we are progressing a Human Rights Bill for Scotland to incorporate a wide range of internationally recognised human rights belonging to everyone in Scotland into Scots law, within the limits of devolved competence.

The Public Sector Equality Duty Review (PSED) – new Scottish Specific Duty Regulations (SSDs)

As discussed in the introduction, we have been reviewing the effectiveness of the PSED regime and, in March 2021, published a report which identified issues and areas for improvement.^[102] We then made commitments to embed inclusive communication, and consulted on ambitious proposals for change relating to the SSDs, as well as the wider environment for implementation so that the regime can be made tangible for everyone in Scotland. ^[103]/[104]

We are introducing new SSDs to ensure inclusive communication is embedded proportionately across the work of listed authorities when they are communicating with the public.

This inclusive communications duty would sit alongside our other work to embed inclusive communication across the public sector, such as developing national standards, best practice and a monitoring system for the effectiveness of this.

Complaints Systems

Inclusive communications should also extend to complaints systems. Complaints systems start with individual organisations and many public organisations also come within the jurisdiction of the Scottish Public Services Ombudsman (SPSO) which means you may take a complaint to them if you are not happy with how you have been treated by an individual organisation and you have already complained to that organisation directly and used any appeal process.

Organisations within the jurisdiction of the SPSO must comply with complaint handling principles approved by the Scottish Parliament and, where the SPSO has issued one, with any model complaints handling procedure (MCHPs) applied to them.

The complaints handling principles approved by Parliament reference the need to be user-focused (recognise the needs of individuals) and accessibility^[105]. Most of the MCHPs contain a requirement to demonstrate how certain legal and other rights are being met. The MCHPs require public reporting of complaints statistics, performance and learning by the organisation.

The SPSO publishes summaries of case decisions online. Their cases include complaints by people with learning disabilities, people with dyslexia, ADHD and autistic people. Some complaints are related to the condition people have. Overall over 50% of people complaining to the SPSO declare a disability. Complaints upheld include from autistic people about treatment by healthcare providers.

In 2023-24, 1,012 users of the SPSO service answered a question identifying conditions: 70 people refer to a developmental disorder, 105 to a learning difficulty and 112 to a learning disability.

The SPOS has produced guidance around vulnerability.^[106] However, complaints to the SPSO must be in writing, as set out in legislation, and so there may be a need for more flexibility around the method of complaint within individual organisations. Within the NHS, for example, there is a patient advice and support service (PASS) which offers support for people to make complaints. The PASS website has accessibility tools and the service itself allows for home visits.^[107]

We think that it is important that neurodivergent people and people with learning disabilities are able to make complaints in the same way as anyone else – with access to accessible and easy read information, with the ability to make complaints in different ways (and not necessarily in writing) and with confidence that their needs will be met.

We think this needs more work and consideration to establish how far existing complaints systems meet the needs of neurodivergent people and people with learning disabilities.

What can the 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 SSDs, in order to assist public authorities to understand and meet their particular needs. The provision of more accessible information links also to our proposals in the mandatory training section, which considers whether there should be a requirement for training for certain professionals in certain public sectors or services. 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 NHS Boards and 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. Local strategies could therefore be required to include consideration of, and reporting on, how the specific communications needs of neurodivergent people and people with learning disabilities have been 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.