Learning Disabilities, Autism and Neurodivergence Bill: consultation analysis

Section 1: Statutory Strategies for Neurodivergence and Learning Disabilities

Introduction

The Scottish Government sought feedback on options/proposals designed to develop their approach to statutory strategies for neurodivergence and learning disabilities. Six proposals were outlined with respondents asked to indicate which they agreed with, which they disagreed with, and if there was anything else that should be considered in relation to strategies. The six proposals were:

• Proposal 1: Introduce a requirement for a national strategy on learning disabilities and neurodivergence to be produced by the Scottish Government.
• Proposal 2: Introduce a requirement for local strategies to be produced by some public bodies, for example health and social care partnerships, local authorities, and other public bodies.
• Proposal 3: Introduce guidance that could cover a range of topics to be included in national and local strategies.
• Proposal 4: Ensure that there is a requirement to review strategies, for example every 5 years.
• Proposal 5: Ensure that people with lived experience are involved in the development of the strategies.
• Proposal 6: Consider whether any new accountability mechanism introduced by the Bill should have a duty to review national and local strategies and their effectiveness.

Main Findings

Overall, 619 respondents provided feedback at this section. Many (nearly two thirds) indicated support for all six proposals rather than identifying one or a few preferences. These respondents felt that all six proposals were sensible and could/should be implemented together in order to provide the most robust framework:

“I agree with all of the proposals outlined because, taken together, they will provide a comprehensive strategy which will work both at national and local levels to provide a framework for the lives of neurodivergent people.” (Family/Friend)

The most popular individual proposals were Proposal 5, followed by Proposal 1, then Proposal 4 closely followed by Proposal 6 (with several respondents suggesting Proposals 4 and 6 could be combined) - i.e. that people with lived experience should be involved in developing a national strategy which is reviewed at regular intervals and includes a duty to review/accountability.

Proposal 1: A National Strategy

Where respondents interpreted the proposals as offering an either/or situation, a national strategy was preferred by far more respondents than local strategies.

Those who supported Proposal 1 felt it would be important to develop a national strategy in order to provide leadership “from the very top”, to provide a national standard and consistency across the country, and to avoid the development of regional or sectoral variations. It was argued that a national strategy would help to ensure that a co-ordinated and joined up approach is taken across all geographic areas and across all sectors/types of service provision:

“Essential that we do not have a "postcode lottery" on what neurodivergence and access to support services means that varies across Scotland. We are a small country, we can have a national strategy with localised deployment tactics - it should not be beyond us to organise this effectively.” (Family/Friend)

It was also suggested that the provision of a national strategy, developed by the Scottish Government, would be helpful in supporting the development of local strategies, plans or actions (to provide some consistency), and would also be necessary to ensure accountability. Some suggested that the national strategy could/should be used in combination with the other proposals, with the national strategy being key in ensuring the model’s success. It was also felt that a national strategy, developed by the Scottish Government would ensure greater status and visibility.

Several respondents who supported the provision of a national strategy to provide leadership, felt that local level delivery or implementation plans should be required (rather than local strategies). These delivery plans would outline how each area/ service will action and contribute towards the national strategy, and how they will achieve the outcomes that have been set by the national strategy.

Although only a very small number of respondents disagreed with Proposal 1, this was generally due to a perception that a national level strategy would be too broad, end up “paying lip-service” to the issues, and would not be impactful. In particular, it was felt that such a strategy would be difficult to implement, both nationally and at local level, in the current financial climate. Meanwhile, others were more generally opposed to combining different populations/conditions (i.e. learning disabilities, autism and neurodivergence) in a single strategy. In addition, a few queried whether, or did not feel that, the Scottish Government would have the necessary knowledge, understanding and front line experience needed to develop an appropriate strategy, and would not have expertise across all the relevant topics/issues. A few also felt it would be difficult for a national strategy to suitably address different local needs and the issues experienced in different geographic locations, with concerns raised about the risk of a national strategy being biased towards the main cities or the central belt.

Proposal 2: Local Strategies for Some Public Bodies

Views on local strategies were more mixed. Those who supported this proposal felt 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. In particular, it would allow for local situations to be factored into strategies, such as rurality, issues unique to island locations, etc.

Those who disagreed with Proposal 2 were mainly concerned about the risk of different interpretations, local variations and a postcode lottery effect in service provision. There were also concerns about duplication of effort, with all local authorities and public bodies developing strategies in isolation. A few were also concerned that local authorities and other public bodies did not have the resources to develop and take forward local strategies. There was also a sense that local strategies would not be successful, and that there would be a lack of ownership and accountability.

The general preference was for local strategies to be used in combination with a national strategy, rather than instead of a national strategy.

A key issue for some of those who disagreed with this proposal, and a caveat to the support of others, was that respondents wanted this proposal to be more ambitious. Rather than only ‘some’ public bodies having to produce strategies, it was argued that this requirement should be applicable to all public bodies.

Proposal 3: Introduce Guidance

While not discussed by high numbers of respondents, Proposal 3 attracted mixed views, with slightly more respondents in favour of this compared to those against (although comments were often minimal/lacking on both sides).

Common reasons for supporting the provision of guidance which would cover a range of topics included in national and local strategies included that:

• Guidance would help to ensure consistency across the country in the level and type of support people receive;
• Nationally produced guidance could support public bodies to develop their own strategies and/or to implement the necessary policies and procedures to meet a national standard, and ensuring local strategies do not contradict the national strategy;
• Guidance would support service providers and professionals to develop a better understanding of how to help those eligible under the Bill, and provide a point of reference;
• Guidance could/should outline evolving best practice and evidence-based approaches; and
• Guidance can be updated more quickly and easily than legislation to remain up-to-date with research and an evolving evidence base.

The main caveats among supporters and reason given for disagreeing with Proposal 3 was the perception that guidance alone would not be strong enough. Individuals wanted compulsory/legal requirements to be placed on public bodies, rather than guidance. Organisations suggested that statutory guidance was needed to ensure compliance with legislation. There was a perception that guidance would be open to interpretation and potentially seen as optional rather than being a means to deliver meaningful change.

Proposal 4: Reviewing Strategies

Proposal 4 was largely well supported, and of the very small number who disagreed with it, most indicated this was due to the stated timescale for reviews rather than being opposed to the principle of a requirement for regular reviews.

Respondents generally felt that building in regular review periods was a positive step which would help to ensure that strategies remained relevant, up-to-date and reflected the latest research, understanding and developments:

“I also think with how quickly developments and understandings around neurodivergence, learning disabilities and other categories of disability are developing, continual reviews (e.g. every five years) would be really useful and important.” (Neurodivergent Individual and Family/Friend/Carer)

It was also suggested that reviews would allow progress to be evaluated and for strategies to be updated to ensure that service users receive the “optimal support”.

As noted above, however, there was some disagreement over how often reviews should happen. While some were content with the five year period proposed, others felt this was too long a time period, with most suggesting reviews should happen every three years. Several respondents preferred even more frequent reviews, at least in the early stages. Such suggestions included yearly or every two years, with a few suggesting strategies should be iterative and constantly monitored and updated as required.

Conversely, a few respondents felt that five years was too short a time period to allow strategies to fully bed in and be impactful. Rather, they felt that longer time periods may be more sensible.

Several respondents suggested that reviews (and accountability, discussed more at Proposal 6 below) should be undertaken independently, and involve those with lived experience directly, support organisations who work with and advocate for the rights of people with learning disabilities and neurodivergent people, or representative bodies established for this specific purpose.

Proposal 5: People with Lived Experience Involved in Development

Ensuring people with lived experience are involved in the development of national and/or local strategies was the most strongly supported proposal, with many suggesting that this was the most important element. It was felt that involving those with lived experience was “vital”/“crucial”/“essential” and something that “must” be done/“needs” to happen, rather than simply being a preference:

“Proposal 5 is, in my opinion, the most important. Only those who have the types of conditions (and their family/carers) the bill will be supporting know what they need, what is lacking and what can be done better.” (Family/Friend)

It was stressed that engaging people with lived experience (including families and carers) was key to developing relevant, meaningful and impactful strategies and any guidance. It was seen as a way to ensure that strategies reflected and addressed the needs of those it aimed to support, and would help to get the strategy right from the outset. Respondents argued that neurotypical individuals do not have the relevant knowledge, experience and understanding of the needs of people with learning disabilities and neurodivergent people to be able to develop a suitably relevant strategy.

There was also an important ethical and rights based argument that the populations the strategy aims to support should be involved in the development - i.e. “Nothing about us, without us!”. This was a term repeated by those with lived experience and the organisations that support them.

Individuals and organisations also highlighted that securing active involvement from those with lived experience would also be required in order to be compliant with the UNCRPD, and the UNCRC for any areas related to children and young people.

Some respondents, however, suggested that the wording should be tightened up to ensure that this represents meaningful involvement, such as genuine partnerships, co-creation, or having people with lived experience leading the work. A few respondents argued that those with lived experience should be involved from the start of any process and not simply asked for their opinions towards the end of the process, and that they should be involved in the delivery and monitoring of the strategies. It was also stressed that their voices needed to be truly listened to and their views and experiences taken on board and acted upon. Respondents felt it was important to avoid the use of tick-box or tokenistic approaches which resulted in those with lived experience having only minimal or superficial involvement.

Another caveat to support highlighted by several respondents (including both individuals and organisations) was that a wide group of people, covering all conditions, demographic backgrounds, and a range of geographic locations needed to be involved. It was important to include those with a range of intersectional characteristics, and those with multiple and/or profound disabilities, including those who are non-verbal or who will require high levels of support to contribute, those who would be the most vulnerable, have the highest needs, and whose voices would typically be heard least often.

It was also highlighted that ensuring meaningful input from people with learning disabilities and neurodivergent people might require the provision of suitable support, advocacy and/or input from specialist or multi-agency professionals to help them to fully engage. A few organisations also argued that individuals should be paid for their time and input, and should not be expected to contribute for free.

Only a handful of respondents disagreed with this proposal. The only reason given more than once was that strategies would reflect the views and experiences of only a small number of people. Other reasons centred around the current wording of the proposal, with one disagreeing because they wanted those with lived experience to lead the strategy development, not simply be involved, and another disagreed because the involvement of those with lived experience was only a suggestion rather than a requirement.

Proposal 6: Duty to Review Strategies and Effectiveness

This proposal was, again, reasonably well supported, with only a very small number of respondents disagreeing with it. However, those who agreed typically discussed accountability more generally rather than just a duty to review. Respondents expressed strong desires for robust accountability to be built into any strategy model - it was argued that this needed to be a compulsory and integral part of the model which was a legal requirement, and not simply a consideration:

“The important thing to note here is that we don't want this to only be about strategies. The Scottish Government and Local Authorities have proven that they are very adept at creating strategies but less so when delivering on them. Therefore, accountability has to be a significant element of this Bill. Scottish Government, Local Authorities and Health Boards have to be held accountable to delivering on the strategy.” (Organisation for Other Disability/ Condition)

It was felt that accountability, and a mechanism for guaranteeing this, would be helpful in ensuring progress is made, that standards are being met and upheld, and that the strategy is effective.

It was argued that a lack of accountability, or ineffective accountability mechanisms would lead to services simply paying lip-service to strategies, without any real and meaningful changes for service users.

Accountability was also seen as an important element to ensure that people know what to expect/what they are entitled to, so that there are clear roles and responsibilities so everyone will know who has ownership or overall responsibility, and who to complain to in order to have situations addressed where service provision did not meet the requirements.

As with comments expressed at Proposal 4, several respondents (including both individuals and organisations) indicated a preference for accountability to be managed by service users/those with lived experience, organisations who support those with lived experience, or an independent body, Commission or Commissioner.

While organisations (mostly but not exclusively public sector) were broadly supportive of a duty to review progress and effectiveness, some did caution the need to be mindful of current and anticipated future reporting requirements on public bodies. Resource requirements and the potential impact additional reporting requirements might have on service provision or other duties needed to be considered.

Again, only a very small number of respondents disagreed with this proposal, with a lack of consistency around the reasons why. A few stated they did not understand this proposal or felt it lacked detail and clarity, a few felt proposal 6 could be combined with Proposal 4. Other reasons given by just one respondent each included that such accountability should be the role of parliament; that accountability could end up driving the strategies; that external accountability would be inappropriate for local needs and situations, or that it would not be effective at the local level; and that it would not address wider stigma.

Caveats, Concerns and Reasons for Disagreeing

A very small number of respondents indicated that they disagreed with all proposals related to statutory strategies, with most doing so because they did not feel that strategies would be effective in achieving meaningful change. It was felt these were likely to add bureaucracy and/or become performative and result in very little real or impactful change. It was also suggested that public services were so severely stretched that they would be unable to implement any new strategies.

Others who agreed in principle with the proposals or individual elements also noted that they had little faith in strategies as these had had little/no positive impact in the past, or had led to overlap and duplication. Several examples of problematic strategies were given as having eroded respondents trust, including the National Autism Strategy, Carers Strategies, The Same as You, and The Keys to Life. These were all highlighted as seeming to have little impact, largely due to a lack of funding/resourcing and being output rather than outcome based.

Again, several respondents (typically organisations and a few individuals) also questioned or disagreed with trying to develop a single strategy to cover the full spectrum of neurodivergent conditions and learning disabilities. They generally felt that separate strategies were needed to focus on the needs of distinct groups. In particular, some argued for a dedicated learning disability strategy.

Other Comments and Considerations

The main issue discussed by individuals was the desire to see more than just strategies. Respondents wanted to see action and tangible changes. They wanted to see strategies, practices, and improvements being implemented and delivered to provide effective support for those with lived experience, and their families and carers. A range of respondents (including both individuals and organisations) advised that funding, resources, suitable staffing, training and education were all required for services, providers and frontline staff to implement any new strategies as a result of the LDAN Bill. Further, some respondents (both individuals and organisations) specifically stressed the need for strategies to be fully funded and resourced in order for them to be successful, with several respondents suggesting such funding needed to be sustainable over the long-term and ringfenced.

Other suggestions, comments or areas for consideration which specifically related to the proposals on strategies included:

• Consult with carers and families, as well as a wide range of professionals, service providers and the third sector to inform any strategy development;
• Dedicated Down’s Syndrome strategies should be considered, or for learning disability strategies to explicitly recognise and include Down’s Syndrome;
• Strategies should take a needs based, human right based, person centred, holistic, and outcomes focus approach - they should also be learning disability and neurodivergent-affirming and supportive;
• Ensure strategies are sensible, realistic and deliverable;
• Ensure strategies are clear, concise and understandable for people with learning disabilities and neurodivergent people;
• Strategies need to make provisions for diagnosis and address issues in this area, as well as addressing post-diagnostic support;
• Strategies need to recognise that the needs and experiences of individuals are varied;
• Strategies should consider intersectionality with protected characteristics and the presentation of multiple conditions;
• Any strategies or activities resulting from a LDAN Bill need to be mindful of, and aligned with other legislation, duties, strategies, plans and reporting requirements to avoid duplication and to embed consistent practice; and
• Learn good practice lessons, for example, the co-production of the BSL Act; the ‘Charter for Involvement’; the implementation of the Education (Disability Strategies and Pupils' Educational Records) (Scotland) Act 2002; SCLD guidance on Developing a Learning Disability Strategy; and Scottish Government’s ‘3 Step Improvement Framework for Scotland’s Public Services’.

Some respondents felt that many of the proposals were vague and sought clarity around what these would involve in practice, what topics and issues they would include or seek to tackle, whether and how they could be enforced, who would be involved in monitoring and assessing the implementation and effectiveness, and what funding and resources would be made available. A few individuals noted that they had found some of the proposals complicated and difficult to understand.

Again, a few respondents were not convinced that creating new legislation, statutory strategies and additional reporting requirements were the best/only way to achieve the desired aims. Instead they suggested that existing legislation, policies and strategies, could be strengthened and enforced, and guidance provided to public bodies which required them to explicitly reference people with learning disabilities and neurodivergent people within existing reporting structures.