Learning Disabilities, Autism and Neurodivergence Bill: Consultation Analysis

Section 3: Inclusive Communications

Introduction

The consultation set out four proposals for ensuring better and more consistently delivered inclusive communications, these being:

• Proposal 1: Provide for neurodivergent people and people with learning disabilities to request access to alternative means of communication where the standard means of communication does not work for them and/or for them to be able to request access to a practitioner with specialist training in certain circumstances.
• Proposal 2: Better access to Easy Read versions of all public facing communications and documents made by public authorities (including a broad duty to make them available on request and an automatic duty to provide them in certain circumstances).
• Proposal 3: For local authority strategies to be required to include consideration of, and reporting on, how the specific communication needs of people with learning disabilities and neurodivergent people have been met.
• Proposal 4: For the Bill to provide for an enforceable Accessible Information Standard for Scotland.

Main Findings

In total, 593 respondents provided feedback at this section. There was strong support overall for each of the individual proposals and a large number of respondents indicated that they agreed with all of the proposals set out. Several respondents suggested that inclusive communication was one of the most important aspects of the BiIl and felt that improved communication would create a more positive experience of accessing services for people with learning disabilities and neurodivergent people, as well as their family members and carers:

“The emphasis on inclusive communication within the LDAN Bill is paramount in ensuring equitable access to information and services for neurodivergent individuals and those with learning disabilities. Inclusive communication not only facilitates the exercise of rights and independent living but also fosters meaningful participation in society.” (LDAN Support/Representative Organisation - Neurodivergent Focus)

Several comments were made that a combination of all four proposals was needed to ensure that inclusive communication aspirations were met.

Proposal 1: Alternative Means of Communication

In relation to accessing alternative means of communication, the majority of respondents supported this idea and many noted that they felt this was long overdue. This proposal attracted the most feedback at this section, almost all of which was positive, with several respondents stressing that having easy access to information presented in an accessible format was a basic human right:

“Everyone with a learning disability should be afforded a means of communication instead of relying on someone else to speak for them.” (Individual with a learning disability)

Respondents who supported this proposal noted that alternative means of communication would allow more people to access services fully. Health settings and justice environments were highlighted most often as places where alternative communications should be made available for individuals and carers who are neurodivergent or have learning disabilities. The importance of providing information in alternative formats in education settings and across multiple local authority services, was also stressed by many. It would be important, however, to ensure that any communication was tailored to the specific needs of individuals/ families and others, and it was recognised that this could make the proposal challenging to implement.

There was particularly strong support for the provision to request access to a practitioner with specialist training, as proposed. This was seen as being highly beneficial, especially where additional support was needed or anxiety existed:

“…having the option to request a trained expert in certain situations, who has experience of working with neurodivergent people, would greatly reduce stress and anxiety caused by already stressful situations.” (Neurodivergent Individual and Family/Friend/Carer)

There was, however, also some caution that there were potentially significant resource implications in making access to a specialist practitioner an enforceable right across all public services. Caution was also raised that this might not always be practicable in emergency or urgent situations. A small number of respondents also suggested that this proposal could be strengthened further by including provisions to allow individuals to be supported by a preferred family member, carer, advocate or support worker.

There was consensus that different individuals would benefit from different forms of accessible communication (for example, neurodivergent people may prefer a video, whilst people with learning disabilities may benefit from an Easy Read version) and therefore a variety of accessible communication types would be required. Examples of other provisions/specific alternative formats which it was felt should be provided included:

• visual information/communication visuals/symbol charts/photo stories;
• audio communication;
• British Sign Language (BSL);
• Braille;
• Moon;
• Makaton videos and Makaton sign options;
• Picture Exchange Communication Systems (PECS);
• multi-sensory story telling;
• Spelling to Communicate (S2C);
• Talking Mats; and
• clear and large print (including printed options).

A notable number of respondents specifically commented that there needed to be better access to Alternative and Augmentative Communication (AAC) supports and tools for people who would benefit from using them.

Having a wide range of choices available as standard would also embed and reinforce the importance of inclusion and equality, it was suggested.

It is worth noting that several respondents commented on the inaccessibility of routinely used existing communications for autistic people, and specifically the use of verbal communication (either in person, by telephone or online). For this reason, the importance of always having written, email or text chat, or face-to-face with a text-to-speech device was also highlighted.

Several respondents discussed personal challenges that they faced with different communication methods and explained that they found it challenging to speak to strangers, or even familiar people in unfamiliar settings, without some kind of support (usually from a well-known and trusted person, such as a parent or carer).

The main perceived limitation of this proposal (cited by several individuals and organisations) was that it placed an onus on people to proactively ask for alternatives, rather than these being made available as standard. Some suggested this would create a barrier to accessing alternative means of communication, and recommended rewording this to place a duty on public authorities to set out the means and different methods of communication available. Comments were made that a wide variety of alternative formats should be provided more routinely/ proactively:

“People should not have to request access to alternative means of communication - the request itself is too much of a barrier for so many people. It should be standard to offer options to everyone.” (LDAN Support/Representative Organisation - Neurodivergent Focus)

Another solution that was put forward by several respondents was the idea of ‘communication passports’ which could be shared between services, etc. so that communication preferences were already known by service providers in advance of appointments, etc.

The main caveat to support was that all accessible communication would have to be of a high standard to ensure it fulfils its intended purpose and that the proposal could also be strengthened by adding mandatory timeframes in which to provide/meet accessibility requests. The other main comment in relation to Proposal 1 was that it would need to be accompanied by public awareness to ensure that people are aware of the right to request alternative means of communication.

Proposal 2: Better Access to Easy Read Information

The majority of respondents supported the proposal for better access to Easy Read information with the dominant view being that the LDAN Bill should include provisions for a broad duty not only to make Easy Read versions available on request, but also for there to be automatic provision in certain circumstances.

Comments were made that there would be added value from this proposal as it would support wider groups in society as well, e.g. deaf communities, those with low reading age, and those for whom English is not their first language.

While this was widely supported, several comments were made that Easy Read must not become the default position for achieving inclusive communications as it was not accessible to all. For example, it was noted that it was not widely used by ADHD adults and it may, therefore, be preferable to employ Plain English as a standard instead. There was some fear that the provision of Easy Read may be deemed by some authorities as being an easy solution/adequate to meet their local inclusive communication commitments, but that this was not user focused.

One of the main limitations highlighted with this proposal was that it would be exceptionally resource intensive, with comments that producing Easy Read documents for all published materials may not be a proportionate means of reaching a legitimate aim. A further caveat to support was that this proposal could lead to unnecessary duplication in work between services, unless implemented in a very clear and systemic way.

A small number of respondents raised the possibility of Proposals 1 and 2 being merged and indicated that they were unsure why Easy Read had been singled out.

Again, suggestions were made that people with learning disabilities and neurodivergent people should be involved in both the development and evaluation of Easy Read materials referred to in Proposal 2 (similar to their involvement in any strategy and training developed).

The main caveat to support was again the cost of producing Easy Reads and concerns around lack of expertise, time and resources to facilitate this proposal:

“Creating Easy Read documents requires training, time and resources. This needs to be considered from a practical and financial point of view.” (Health Service)

Overall, while this proposal was supported as one route to achieving better and more inclusive communications, many respondents felt it should be only part of the wider solution, and should not be the only method prioritised or used.

Proposal 3: Inclusive Communication Strategies

In relation to strategies for meeting and reporting on inclusive communication needs, this was again strongly supported on the basis that it would strengthen awareness, accountability and transparency of provision, and that, without it, it was unlikely that inclusive communications would ever be prioritised in local areas. It was also felt this would help to ensure consistency of provision, and to counter what many described as the current postcode lottery with regards to accessible communication.

Having a nationally agreed standard accompanied by locally implemented strategies was also seen as maintaining some core consistency whilst also allowing for tailored approaches:

“We recognise the potential benefits of national standards supported by guidance for inclusive communication. This will provide a standard against which training and effectiveness can be benchmarked, and encourage consistent language, communication options, and styles, across public services. Making this guidance adoptable, but easily adaptable for local use, will support more efficient use of public funds and enable public service providers to collectively have more impact on providing effective service delivery, without the expense of each having to develop their own.” (Other National Public Body/National Agency)

In line with comments made in response to Proposal 1, many respondents again stressed that any guidance developed on local strategies should be clear there is a duty to always provide accessible communications, with a move away from an ‘on request’ model.

One of the main caveats to support for Proposal 3 was that it was not clear why legislation was required, with some feeling that national and local ‘guidance’ for strategies may be sufficient.

Proposal 4: Accessible Information Standard for Scotland

Comments linked to the proposal for the Bill to provide for an enforceable Accessible Information Standard for Scotland were all mainly positive and a small number of respondents noted that they felt this proposal would be the most impactful of the four communication proposals overall. Suggestions were made that this could be linked to any new accountability measure that the proposed LDAN Bill might introduce, to ensure compliance.

Several respondents noted that existing guidance and legislation such as the Equality Act (2010) meant that inclusive communication should already be considered best practice and be more widespread, although this was not happening in practice. Similarly, Article 9 of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) on the right to accessibility of the physical environment, transportation, information and communication, and services open to the public was also often currently overlooked, it was felt. The Standard in section 250 of the Health and Social Care Act 2012 was also cited as being enforceable only insofar as bodies must pay regard to it. As a result, there was some cynicism regarding the effectiveness of yet more legislation in this regard, and questions around why greater enforcement of existing requirements would not be more effective. Making the Standard enforceable was, nonetheless, welcomed as a means of potentially ensuring compliance and action going forwards.

On a related note, it was again suggested that all of the inclusive communications proposals needed to be considered alongside existing legislation/pending legislation such that a more joined up approach to implementing and enforcing compliance with standards could be found.

Several respondents also suggested that the Accessible Information Standard made under section 250 of the Health and Social Care Act 2012 should be best practice across the whole public sector, not just health and social care services.

A specific point of caution was also noted that it was important to recognise that accessible information was only one part of inclusive communication and that wider/alternative measures were needed alongside this proposal to ensure overall reach and effectiveness of the Bill:

“Accessible Information is one area of Inclusive Communication. The two terms are not interchangeable. The Accessible Information Standard does not equate to Inclusive Communication good practice. For example, it does not incorporate the need to recognise every community includes people who communicate in different ways or to proactively meet those needs without requiring people to "ask"... It would be better to enforce a National Inclusive Communication Standard (which would incorporate the Accessible Information Standard).” (Other Organisation)

As with many other areas of the Bill, this was one area where the involvement of people with lived experience was again seen as essential.

Again, a small number of respondents set out what they perceived to be the added value of this proposal in terms of addressing literacy barriers within the general population. While there was already good practice established for producing accessible information for people with learning disabilities and associated conditions in some areas, making this mandatory would be beneficial to further increase understanding and access for a range of diverse groups, it was felt, including those for whom English was not their first language.

Some respondents noted a need to recognise that services would need to be given investment to support meeting this standard which they cited as the main risk to implementation. There was also some evidence that a small number of respondents did not understand what was being proposed as well as some concerns that it was not clear specifically which public bodies Proposal 4 would apply to. Overall, however, sentiments reflected support for an enforceable standard as being preferable to guidance which may not be followed.

Reasons for Disagreeing

There were very few respondents who disagreed with the proposals in their entirety. Instead, while some limitations of the proposals were cited, this was often as a caveat to support, rather than being presented as a complete disagreement with the options set out.

As above, the main reason for disagreeing with the proposals (especially Proposal 1) was that respondents perceived them to require individuals to be proactive in asking for information (and a less reactive approach was preferred). It was highlighted that some individuals may face barriers to requesting their preferred/ required format due to language, awareness, knowledge or confidence.

The other main disagreement was related to the proposals being too generic, and therefore not meeting the needs of all those covered by the Bill. Again, it was stressed that the communication needs of those with learning disabilities and autistic and neurodivergent people were too different to be addressed by a single approach.

Others suggested that tackling inclusive communication as part of the LDAN Bill would be less effective than tackling it as part of wider Human Rights legislation if it was to benefit the widest audience possible.

Other reasons for not agreeing with the proposals (mentioned by just a very small number of respondents each) included that:

• Improved advocacy and support would be a better (or additional) way of achieving the intended aims;
• The proposals would not be helpful to those who were undiagnosed and who may therefore find it harder to have their requests/needs met; and
• The proposals currently did not specifically or adequately address the inclusive communication needs of autistic people.

The other main disagreement with any of the specific proposals was with Proposal 3 - a small number of respondents did not agree with ‘local strategies’ as they felt this left too much room for geographical variation, rather than consistent practice nationwide.

Other Comments and Considerations

Other comments included that:

• Accessible information needed to be high quality and there must be quality checking mechanisms in place to ensure that standards are met (for example, with well-produced Easy Reads);
• Accessible communication strategies should be accompanied by better environments for communication which take account of any sensory adaptations that may be necessary (for example, softer lighting, blinds closed on request, etc.);
• There was a need for wider ‘accessible information’ in service environments overall, such as clear and concise signage, real-time information displays, etc. as standard;
• Accessible and inclusive communications must also be sensitive to equalities/inclusive of other differences - e.g. ethnic, cultural difference, gender difference, etc. (with production of documents in both a different formats AND in other languages/dual adaptations);
• More focussed strategies/proposals may be needed to cover inclusive communications for children, young people and their families/carers;
• Investment in information technology systems across public services may be required to enable individual’s preferences to be easily recorded, updated or shared across organisations;
• The changes covered by the proposals must be enforceable and sanctionable and must not be left to local/organisational choice, as they would otherwise fail;
• The means of complaining about lack of accessibility (and other aspects of service provision) must also be accessible, i.e. it would be important that people with learning disabilities and neurodivergent people were able to make complaints about lack of accessibility/inclusion and further consideration may be needed to assess how far existing complaints systems meet the needs of those covered by the Bill; and
• Training in inclusive communication would be essential to complement the proposals set out (with suggestions made for practitioners with specialist skills and training to be available within all services to assist with communications).

Comments were also made that the Bill should separately consider the inclusive communication support needs of carers/young carers who may be called upon to support communication with their family members when they are trying to access services. In many cases, the preference was for these individuals to speak on someone’s behalf, but they too may have communication needs. This was perhaps not sufficiently well covered by the current proposals.

Several respondents again stressed the importance of taking forward these proposals with the inclusion of people with lived experience. Several organisations (including specialist and third sector organisations) also expressed an interest in being involved in the onward shaping and implementation of these proposals.

A number of questions were asked around who would be responsible for funding and facilitating the proposals, and there was particular concern regarding how access to appropriate alternative methods of communication would be met when existing services that facilitate inclusive communication were already struggling with existing demands. Given the relatively small pool of often specialist services/ specialist staff available, it would be important that expectations around access to alternatives were managed so as not to raise expectation that cannot be met.

More general comments were linked to the cost of achieving these proposals as a whole and the time required to embed them, with the need to manage expectations in this regard being a common concern. Some respondents sought greater clarification/assurances around adequate commissioning and planning of services to be able to achieve the proposals.

A number of respondents also asked questions around what quality controls would be in place to ensure that communication standards were being met (other than those set out in Proposals 3 and 4). Clarity was also sought around how both those with clinical and lived experience would be involved in the design and implementation of services. There was a strong preference for co-production in taking forward any strategies and documents related to these proposals, including input from both those with lived experience and communication professionals.

There was consensus that, whatever proposals were implemented, they must also be constantly monitored, reviewed and updated as necessary.

A very small number questioned how these proposals would intersect and/or conflict with Freedom of Information (FOI) legislation and how information regarding communication preferences might be stored and shared.

Several organisations noted that these proposals would be challenging to operationalise given existing workload and budgetary demands, and welcomed further information on how such proposals would be implemented, particularly in primary care, to ensure that the already excessive burdens on services were not exacerbated.

Finally, it should be noted that a small number of respondents used this question to express that they had found the consultation document inaccessible and cited it as an example of where information could have been better communicated. It was suggested that presenting information in alternative formats was not always sufficient in its own right to make the information accessible i.e. the material being presented and the substantive content of the information must avoid overuse of acronyms, be non-jargonistic and be coherent as a starting point.