Learning Disabilities, Autism and Neurodivergence Bill: consultation analysis

Summary of Common Findings

Introduction

Throughout the consultation responses several key findings emerged which were common across most of the Parts and Sections covered by the consultation document, and were views shared by a wide range of respondent types.

Common Issues

Involve those with Lived Experience

Respondents were keen to stress the need to include and involve those with lived experience in designing, delivering, reviewing and evaluating any changes. This specifically included, but was not limited to, strategies and guidance; inclusive communication; training; data collection, analysis and reporting; and in the design of any more sector specific and unique proposals.

It was also felt that input needed to be meaningful, with suggestions that changes should be co-designed or led by those with lived experience. Those involved also needed to represent a wide range of learning disabilities, autism and neurodivergent conditions, as well as different demographic backgrounds. It was also suggested that families and carers, and Disabled Persons Organisations (DPOs) should also be involved.

Mandatory Staff Training

The need for mandatory staff training was mentioned repeatedly, both in relation to training on learning disabilities, autism and neurodivergence, and around inclusive communication and other more specific measures. It was argued that training needs to be neuro-affirmative; condition specific; sector and job role specific; and trauma informed. It was felt the need for training was widespread and should be implemented across the public sector, and cover front line practitioners, managers, and reception and other support staff, as well as within relevant regulatory bodies. There were also suggestions that some areas of the private sector would also benefit from such training, including employers and transport providers.

In addition, it was suggested (albeit less often) that greater education and awareness raising was required among the general public in order to tackle stigma, prejudice and negative attitudes often experienced by people with learning disabilities and neurodivergent people.

Accessible Communication

The need for accessible communication and information was widely supported and felt to be vitally important across a wide range of services and sectors. While respondents were highly supportive of the provision of Easy Read information, it was stressed that inclusive communications needed to go beyond that and incorporate a wide range of different formats in order to accommodate differing needs. It was also felt that the availability of alternative information formats needed to be widely advertised and offered proactively rather than requiring people with learning disabilities and neurodivergent people to ask for them.

It was also suggested that the principle of inclusive communication needed to go beyond the provision of written information to include offering different methods for making appointments, conducting consultations/meetings, for the provision of information/data, and understanding how the use of certain methods can be inclusive for some while also being exclusionary for others.

Accountability

Again, in relation to many of the proposals put forward, respondents stressed the need for robust accountability and real consequences for services not delivering on requirements. It was felt that legislating for the development of strategies, the collection of data, reporting, training, etc. would only be useful if these were used to inform changes and implement changes on the ground. Each proposal needed to be meaningful in delivering change, and not be seen as a tick-box exercise or an outcome in itself. As such, respondents wanted to see real accountability, with any accountability body provided with robust oversight responsibilities and “real teeth” to enforce requirements.

Problems and Delays in Diagnosis

Throughout the different consultation sections, respondents highlighted problems with obtaining a diagnosis. This included both difficulties in accessing a diagnostic pathway (particularly for adults who found it difficult to be referred for assessments), and extensive delays in being assessed and diagnosed following a referral. These issues were said to be problematic in themselves, resulting in poor mental health, and in wider problems in terms of accessing support services (again, with the problem being particularly acute for adults as a diagnosis was said to be routinely required to access services).

Issues around diagnosis were also expected to have an impact on the proposals set out in the consultation document, with respondents seeking clarification on whether a diagnosis would be required to access the support set out.

Several respondents also expressed disappointment about the lack of any proposals within the consultation document to tackle diagnosis problems. It was felt that timely and accurate diagnosis was a vital foundation for all other service provision and proposed support measures, and therefore it was a missed opportunity not to address this.

Capacity, Funding and Resources to Deliver

At every section and set of proposals outlined, respondents expressed concern over how each of the proposals would be delivered given the current stretched finances and staffing problems across public sector services. Respondents highlighted and discussed current capacity, funding, resourcing and staffing issues across a range of public sector services and organisational sectors. There was a sense that services were not able to provide an acceptable level of service or reasonable adjustments in line with current legislative requirements, and therefore, they would be unable to fully implement any proposals or changes which may be introduced by the LDAN Bill without adequate funding and increased capacity. Respondents stressed that the proposals needed to be fully funded otherwise it may exacerbate the current implementation gap:

“There are other areas that must be considered. The most urgent of these is the lack of resources across the system. This is a systemic issue and underlies many of the challenges that young people face in accessing appropriate services and support. We are concerned that the LDAN Bill may focus too heavily on reporting and accountability mechanisms which will be meaningless if statutory agencies and partners do not have the funds available to provide the services in the first place.” (Other Organisation)

Respondents also stressed that, even though they largely agreed with the proposals that had been put forward, they were concerned that they would not be enough on their own to make real tangible changes to service delivery or the experiences of people with learning disabilities and neurodivergent people. Whilst one aspect considered vital for ensuring change was developing additional capacity within existing services (for example, increased diagnosis capacity, increased Additional Support for Learning provision in schools, increased provision of affordable and adapted housing options), it was also felt that greater availability or new tailored services were also required, for example the development of more appropriate mental health services or the provision of adult support, care and activity services. Similarly, it was also suggested that issues around accessibility of services were often structural in nature, for example, existing school and public transport environments were said to be overwhelming and unsuitable for many. As such, greater investment was said to be required to update and redesign certain facilities to be more aware of and inclusive for people with learning disabilities and neurodivergent people.

Uncertainty Around the Need for Legislation

In general, several respondents felt there was a lack of clarity around what the LDAN Bill sought to achieve that was not already covered by existing legislation. Respondents noted that there should already be significant rights and protections conferred on people with learning disabilities and neurodivergent people by the Equality Act, the Human Rights Act, the UN Convention on the Rights of the Child (UNCRC), and the UN Convention on the Rights of Persons with Disabilities (UNCRPD), among others. Rather than introducing further legislation, respondents suggested that efforts should focus on addressing the existing implementation gap and enforcing these current requirements.

Similarly, at various proposals throughout the consultation document, several respondents suggested that legislative changes may not be required. Rather they could be achieved by other means, such as the use of statutory guidance, the introduction of accountability measures and/or reporting requirements.

Common Themes by Respondent Type

As noted above, most findings presented throughout this report represent views that were expressed across a range of different respondent types. Identifying differences in views between different groups of individuals was hampered by the fact that many indicated that multiple respondent categories applied to them, and they provided feedback across different experiences and perspectives. For example, a few individuals had both a learning disability and were neurodivergent, while many with direct lived experience were also family/friends and/or carers of others with learning disabilities or neurodivergent conditions (although the nature of the condition of the person they cared for was not specified). As a result, distinct and reliable differences in the feedback between groups of individuals were difficult to identify and limited. Meanwhile, differences in feedback by organisational sector within consultation sections was also limited, both due to the small numbers of respondents per sector who responded at some sections of the consultation, and due to largely mixed views provided within sectors (and echoed across a range of different sectors and individuals). However, more general and high level differences in organisational feedback and areas of concern are set out below.

Several third sector organisations and DPOs represented minority groups (in the context of this sample), rarer conditions, or particular demographics. As such, these organisations’ responses were driven by this perspective and tended to advocate for their specialist issue throughout. This included stressing the need for the consultation document and/or LDAN Bill to take proper account of:

• Different age groups, with more focus needed on children and young people in particular, as well as people in older age/life stages;
• Gender issues;
• Ethnicity and race;
• Intersectionality with LGBTQI+ identities and experiences;
• Intersectionality and co-morbidity of physical disabilities, sensory impairments, and other serious health issues.

LDAN support/representative organisations tended to advocate for the specific group they represented, i.e. either those with learning disabilities, autistic people, or neurodivergent people. Some of these organisations, however, provided wider responses and considered how the proposals would/could impact on others (including service providers) in order to provide a more balanced response.

Carers’ organisations tended to advocate for the voice of carers to be heard and taken into account when developing the Bill and any actions that result from it. They also highlighted the crucial role parents/families/carers play in supporting those with learning disabilities and neurodivergent conditions, and the impact this can have on carers (i.e. that they had their own unique support needs which may need to be addressed). As such, they argued for greater support for parents/families/ carers and for such provisions to be added to the Bill.

The health and social care, local authority and justice sectors were largely made up of public sector organisations and other public bodies, although a few third sector organisations were also identified within the sample. Overall, respondents in these sectors were generally supportive of (or neutral towards) the various proposals set out in the consultation document, and were keen to improve their services to be more inclusive and better meet the needs of people with learning disabilities and neurodivergent people. They were, however, concerned about the practicalities of implementing the proposals and commonly flagged funding and resourcing issues, staffing levels, the need to consider and align new and existing requirements and duties, and the potential need for staff training (and increased capacity) and upgrades to IT systems to deliver the desired outcomes. It should be noted, however, that at the section/question level, a common view did not often emerge from within each of these sectors, but rather a mix of topics and issues were discussed. Further, the views of respondents in these sectors were often supported by a range of different individual and organisational groups.

Views from mental health organisations were drawn from a mix of public and third sector organisations as well as representative bodies. This was also the case for children and young people’s organisations and education based organisations. Within and across these sectors respondents adopted a broad and balanced approach to their responses, highlighting the needs of those with learning disabilities and neurodivergent conditions within their own service sector and more generally, and being keen to support and meet these needs, while also being cognisant of the existing challenges and limitations within the system.

The views of national public bodies and trade unions/representative bodies largely supported the views of the sector they were linked to, e.g. local authorities, health and social care, mental health, etc.

At various points throughout the consultation, advocacy services, speech and language therapy, and sports focused organisations stressed the importance of their services, and the positive impact they can have in supporting people with learning disabilities and neurodivergent people. Again, they largely felt that greater consideration of these services and provisions to support and include these sectors should be made in the Bill. However, these views were also echoed by a wide range of other respondents (both individuals and organisations) who valued and/or had previous positive experiences with such services.

The remainder of this report sets out the findings as they relate to each consultation section.