Executive Summary: Learning Disabilities, Autism and Neurodivergence Bill: Consultation Analysis

Part 2: Overarching Themes

Section 1: Statutory Strategies

The consultation document set out six proposals in relation to the development of statutory strategies for neurodivergence and learning disabilities. Overall, 619 respondents provided feedback at this section with the main views being:

• to involve people with lived experience in the development of strategies - this was the most strongly supported individual proposal, seen as being key to developing relevant, meaningful and impactful strategies. Respondents argued there should be “Nothing about us, without us!” stressing the need for meaningful involvement and co-creation, and involving a wide group of people, covering all conditions, demographic backgrounds, and a range of geographic locations.
• development of a National Strategy - to provide a national standard and consistency across the country, thus avoiding the development of regional or sectoral variations. Only a small number of respondents explicitly disagreed with a national strategy, generally due to a perception that this would be too broad, end up “paying lip-service” to the issues, and would not be impactful.
• reviewing strategies - respondents generally felt that building in regular review periods was a positive step which would allow progress to be evaluated, and help to ensure that strategies remained relevant, up-to-date and reflected the latest research, understanding and developments.
• duty to review strategies and effectiveness - respondents expressed strong desires for robust accountability to be built into any strategy model on the basis that ineffective accountability mechanisms would lead to services simply paying lip-service to strategies, without any real and meaningful changes for service users. Several wanted requirements to be enshrined in law, with robust consequences for not fulfilling these.

The idea of local strategies for some public bodies attracted mixed views with those in support feeling that local strategies would be more effective, allowing local services to identify priority issues and areas of the greatest need, and to develop services which support people in their communities. Those who disagreed were mainly concerned about the risk of local variations and a postcode lottery in service provision, as well as a lack of accountability. Respondents tended to prefer local strategies in addition to, and to help deliver, a national strategy.

Similarly, the use of guidance received lower levels of support and attracted mixed views. While guidance was seen as helpful and supportive for local services, guidance alone may not be robust enough.

Respondents also wanted to see action and tangible change, not just strategies, and they stressed that funding, resources, suitable staffing, training and education were all required for services, providers and frontline staff to implement any new strategies.

Section 2: Mandatory Training

Overall, 674 respondents provided feedback and there was significant support to establish mandatory training for those working in health and social care and education (from early years to further and higher education). While training for staff in the justice sector was mentioned slightly less often (compared to health, social care and education), this was still very much supported.

Several respondents suggested that mandatory training requirements should be extended to all public services/public sector staff. Respondents also felt that training should not be restricted to public facing staff but should include those at management level and those performing administrative or corporate duties (and should be sector and role specific). Most respondents also advocated for mandatory training rather than voluntary/optional training as they felt this would increase uptake and ensure positive change.

There was also widespread agreement that the design and delivery of this training should involve people with lived experience from a wide range of backgrounds. While there was no overall consensus regarding what the focus and content of the training should be, respondents did stress that training should be neuro-affirming and should cover issues relevant to both children and young people and adults.

Several respondents felt that the development of a national training model would be helpful to ensure consistency across the country and between different public services. There were also calls for training to be accredited, monitored, and updated regularly. Further, it was suggested that refresher training or regularly updated training be offered.

The main concerns were that any training might be too generic, may exacerbate existing “training burnout” faced by public sector staff and may be unrealistic in terms of resources and impact on staff time/capacity.

Section 3: Inclusive Communications

In total, 593 respondents provided feedback at this section. The majority of respondents strongly agreed with proposals for improved access to alternative means of communication to allow more people to access services fully. The main perceived limitation was that this proposal placed the onus on people to proactively ask for alternatives, rather than these being made available as standard. Instead, it was suggested that a duty should be placed on public bodies to offer different formats, or for ‘communication passports’ to be used so that services are informed of preferences in advance.

The majority of respondents also supported better access to Easy Read information and it was felt 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. Several respondents also stressed that Easy Read must not become the default position for achieving inclusive communications.

While attracting less feedback, there was also strong support for local authority strategies to consider and report how communication needs have been met on the basis that it would strengthen awareness, accountability and transparency of provision. It was also felt this would help to ensure consistency of provision.

Feedback on an Enforceable Accessible Information Standard for Scotland was also mainly positive with respondents perceiving this as a means of potentially ensuring compliance and action going forwards.

Section 4: Data

Overall, 492 respondents provided feedback at this section and there was widespread support for the collation and use of data generally, regardless of the mechanisms developed to achieve this. It was felt that access to robust and high quality data was essential to identify unmet need and the scale of any issues, for service and resource planning, to identify areas for improvement, and to monitor and assess outcomes. Similar proportions of respondents (roughly half of those who responded at this section) supported each of the proposals including:

• A Commission(er) Responsible for Data Collation - respondents were generally supportive of having one central organisation/department/person responsible for coordinating and overseeing all data-related issues and which could provide guidance and support to other public bodies; ensure consistency across services/the country; monitor and quality check returns or reporting; collate the data at a national level; ensure meaningful improvements are made as a result of the data; and ensure accountability. Those who disagreed with this proposal typically did so because they disagreed with the creation of a new Commission(er) per se.
• Duty to Collect Data and to Provide Returns - this was supported on the basis that there was an identified need and that imposing duties would support public bodies to prioritise this to provide higher quality and more meaningful data. This data would support the development of local services which were best tailored to meet local needs, while returns would allow national datasets to be collated and a national position to be established. Some respondents argued that all public bodies should be required to collect data and provide returns, not just “some”.
• Review the Deaths of People with Learning Disabilities - respondents generally supported this on the basis that it was important to review experiences and outcomes in order to learn lessons which could improve outcomes going forward and address the early mortality rates for people with learning disabilities. Some wanted these reviews to be expanded to include autistic people, with others suggesting this should include all neurodivergent people. Others were keen to ensure that more could be done to tackle issues while people were still alive rather than only reviewing situations after death.

Many respondents stressed the need for disaggregated and condition-specific data, as well as intersectional data, while many also raised concerns around the collection and possible use of data. Yet others had more practical concerns linked to consistency, data protection, informed consent, and data validity. It was also stressed that data collection needed to be meaningful and used to make real improvements.

Section 5: Independent Advocacy

Overall, 460 respondents commented at this section. Levels of support were similar for each of the proposals presented, with just over half of those who responded offering support to proposals to:

• Strengthen and Improve Access to Advocacy - current low levels of awareness and difficulties/barriers faced in trying to access advocacy were highlighted, including long waiting lists and varying provision across the country. As such, there was solid support for the use of and improved access to independent advocacy. There was also strong agreement with a duty for all public bodies to ensure that all people with learning disabilities and neurodivergent people are given information about advocacy and how to appoint their own independent advocate. It was also suggested there was a need for advocacy to support people during all challenging life stages and events, and this should not be restricted to limited sectors/services. However, respondents were also concerned about the sector’s ability to increase capacity and meet the needs of those covered by the LDAN Bill.
• Improve Understanding of Independent Advocacy - respondents were generally supportive of improving understanding and those who disagreed generally did so because they felt it was suggesting restricted access to advocacy. Respondents argued that the LDAN Bill should provide a legal right to free advocacy in all circumstances where it is needed and not just in specific cases for specific people.

Many respondents were keen to stress that any developments related to advocacy should involve and be informed by those with lived experience. Many also argued that the advocacy sector required more funding, resources, staffing (including specialist advocates), and training, both to meet current needs and to accommodate any increase in demand as a result of the proposals. Others called for regulation of the sector. Yet others set out more practical suggestions and recommendations around how advocacy services should operate.