Working together towards a Learning Disabilities, Autism and Neurodivergence Bill: Costs and benefits considerations

Outline costs and benefits associated with the Bill’s proposals

Reach and definitions

This section of the proposed Bill will clarify the Bill’s reach and provide definitions for the groups within the Bill’s reach. The proposed approach is to use the term ‘neurodivergence’ as the overarching definition of who the Bill should apply to, and as the key concept in the Bill.

We intend to set out in the Bill some, or all, of the conditions which fall under this overarching term. We are also considering if we should specify conditions that would not be within the Bill’s reach. It would also be our intention to allow these to be changed in the future, by secondary legislation, should the Bill become law. This could help futureproof the Bill as understanding of neurodivergence and different types of neurodivergence develops.

It is not thought that there would be costs directly associated with the Bill provisions setting out a legal definition of neurodivergence. However, some costs for the Bill’s proposed measures could be dependent on the size of the population that the Bill will apply to. As we further develop a definition of neurodivergence, the size of the population included will impact on costings for each proposal and views from relevant delivery partners will be sought on this. For example, the cost of extending eligibility to access advocacy will depend on how many additional people have the right to use these services.

While we do not think that people should have formal diagnosis to be able to benefit from the proposed Bill, we do think that the proposed Bill is expected to raise awareness and may lead to more people realising or considering that they may be neurodivergent and seeking diagnosis. This could in turn impact on the population size covered by the Bill and increase its overall cost. It could also have impact beyond the proposed Bill contributing to an increasing demand on diagnostic services as well as support services available to neurodivergent people and people with learning disabilities. We are conscious that this may come at a time when services already face pressure related to increased demand for information, support and diagnosis. However, the Bill is in tune with a broader societal and cultural shift currently resulting in increased awareness and acceptance of neurodivergence and so it is unlikely to be possible to assess the Bill’s impact on any increases in people seeking information, support and diagnosis in isolation.

Setting out in legislation a definition of ‘neurodivergence’ is expected to empower neurodivergent people and people with learning disabilities, their families and carers, by providing clarity on who the law applies to and what rights and entitlements they may have under the Bill. This clarity also supports greater accountability. Additionally, public services could benefit from a legal definition as it would provide clarity on their duties under the Bill and allow more consistent policies aimed at improving the experiences of the group(s) defined by the Bill.

National strategy, local delivery plans and guidance

National and local strategic approaches are an integral part of increased visibility, transparency and accountability, as well as facilitating strengthened leadership and cultural change.

It is proposed that Scottish Ministers develop and publish a national strategy every 5 years. People with lived experience, their families and carers should be at the heart of the development of the strategy. The national strategy should be evaluated and reviewed before being refreshed regularly. It is proposed that the Bill could set out what the strategy must always address and that there is a regulation-making power to ensure the strategy’s contents can be amended via secondary legislation if needed.

It is also proposed that national strategy would be reliant on local delivery plans to ensure effective implementation, in a consistent way, across Scotland whilst taking account of local needs, structures and resources. Therefore, it is proposed that there would be a statutory requirement for some public bodies to develop and publish a local delivery plan aligned with the national strategy.

It is proposed that the local delivery plans are reviewed regularly e.g. every 5 years, in sequence with the national strategy. And, that the public bodies required to produce local delivery plans be required to provide progress updates to Scottish Ministers every year. Both the local delivery plans and the annual progress updates would have to be published in a way that is accessible to neurodivergent people and people with learning disabilities.

We are also proposing that the Bill places a duty on Scottish Ministers to issue statutory guidance setting out the steps public bodies should take to ensure implementation of the national strategy and to develop and deliver local delivery plans, in the exercise of their functions. It is intended that the statutory guidance would include direction and support for public bodies on how to carry out their duties to ensure multi-disciplinary, and cross-organisational and cross-sectoral collaboration.

The main costs associated with these proposals would be the cost of developing, monitoring and reporting on the national strategy and the local delivery plans. Additional cost would entail developing the statutory guidance and reviewing the annual progress updates from public bodies required to implement a local delivery plan.

We want to ensure that the human rights-based approach we have taken when developing the Bill’s proposals is carried through and embedded in their implementation. This would mean that meaningful lived experience is woven into the strategic planning at both national and local levels. There would be costs associated with supporting people with lived experience to fully participate in the development of policy which will affect their lives, including paying expenses and compensating them for their time in line with Scottish Government guidance on paying participant expenses and compensating for time.

Costs of developing the national strategy alongside people with lived experience would depend on the timescale and nature of engagement. This would include costs of facilitating lived experience involvement and accessible papers and publications. There could also be costs associated with directing current government policy capacity to developing the national strategy. If a public awareness campaign is to be included within the national strategy, as, for example, in Northern Ireland under the Autism Act (Northern Ireland) 2011, this would also carry costs.

Work is ongoing to further develop our understanding of the possible costs associated with the development of local delivery plans. We understand local areas may need dedicated resources to develop, monitor, evaluate and report on these. We will work with relevant Public Bodies to estimate what these costs may be.

The proposal to introduce a requirement for a national strategy, local delivery plans and accompanying statutory guidance is intended to be one of the most far-reaching proposals. Setting out publicly a national strategy and the approach that would be taken locally to implement it is expected to strengthen transparency and accountability. Standardised, consistent and accessible local plans could enable people, their families and carers to better know and exercise their rights and have their choices respected. Implementation of the policy on the national and local level is intended to support relevant public bodies in improving services and meeting needs of neurodivergent people and people with learning disabilities more consistently across Scotland.

Mandatory training in the public sector

The proposal to mandate training for public sector professionals in various sectors is intended to increase their confidence, skills and competence in being able to identify and understand the needs, experiences and behaviours of neurodivergent people and people with learning disabilities. Mandatory training, and hearing from people with lived experience as part of this, could help services to better understand how to make reasonable adjustments. This could lead to more efficient and effective services and improved outcomes.

Based on the UK Government’s impact assessment on the draft Code of Practice for its mandatory training on learning disabilities and autism for health and social care workforces, the following was assumed prior to implementation: a 6% reduction in health inequalities; cost savings to the NHS; higher wellbeing; reduced inappropriate healthcare service usage; reduced delays to treatment and discharges; reduction in clinical negligence claims and costs; significant improvements to knowledge, skills and confidence amongst staff groups. We will work with the UK Government to understand how effective the training has been in achieving this, which will help our own thinking.

For the LDAN Bill, it is proposed that the legal duty is prioritised for introduction in the health, social care, and justice public sector bodies at first, with the option to extend this duty over time. This would mean that costs would arise in stages. There are private providers in the health and social care sector and we are conscious that there may be limitations on the ability of Scottish legislation to introduce mandatory training for these companies. We are considering the options available to us, the outcome of which will have a bearing on the overall costs of the proposal.

It is proposed that a statutory duty would be placed on Scottish Ministers to prepare either a statutory Code of Practice; statutory guidance; or training standards, to support consistent implementation and provide a national framework.

Work is ongoing to fully consider what the training programme should look like. It will need to appropriately balance different needs and expectations. For example: designing a training programme with contents that people with lived experience and stakeholders tell us is needed; designing a training programme with contents that practitioners tell us would be helpful to them; and, respecting existing training demands and pressure on frontline practitioners so that services can still deliver effectively.

Future development can ensure that collaboration with stakeholders, people with lived experience, practitioners and relevant public sector organisations is an integral part of designing the learning package. We are considering the option of a tiered training programme so that there could be different levels of training available which are suited to different roles.

Costs of this proposal would include development costs such as designing, developing and likely procuring a training programme, and, thereafter, both the initial and ongoing implementation costs such as delivery of the training programme by trainers, as well as venues and other resources.

We are considering various options including the Scottish Government, or an organisation commissioned by the Scottish Government, owning a training programme that is then freely available to public bodies. This could prove to be a more cost-effective option than individual public sector organisations developing their own materials – but could remove some flexibility for local or organisational context. This would require further consideration as the work progresses. We are proposing that the training should be repeated regularly, for example, every 3 or 5 years.

Other costs could include the establishment of government and local teams to support the ongoing implementation of the training programme, including monitoring and evaluation. We could commission an academic institution, or another delivery partner, to aid with this.

The most significant cost is the time each employee spends taking the mandatory training. This would need to be undertaken in a way that minimises disruption to normal public services. However, we know that for many practitioners, training time is built into their roles which this could form part of. As we continue developing the proposal and our understanding of the related costs, we will seek key delivery partners’ views.

We heard from stakeholders about a lack of awareness of the needs of neurodivergent people and people with learning disabilities within the public sector workforce, and from staff about a lack of training opportunities. We know how this lack of awareness can impact negatively on people’s experiences with public services and their ability to access them. As noted in the main publication, consultation analysis and other evidence indicates the negative outcome this can have on quality-of-life indicators such as life expectancy and mental wellbeing.

Responses to the consultation were heavily in favour of mandatory training with many people with lived experience noting this proposal as their highest priority. A number of public sector organisations were also in favour, such as the Care Inspectorate, a number of NHS Boards, professional staff groups and some Royal Colleges. Where objections existed, they were usually from an organisation within the sector citing a lack of resources to deliver training or the pressure this would add to frontline services. Some respondents with lived experience opposed the proposal, arguing that the money would be better spent directly supporting neurodivergent people and people with learning disabilities.

Health and social care staff being better equipped with specific training to understand the needs of neurodivergent people and people with learning disabilities could improve care and help lower health inequalities. For example, people with learning disabilities die on average 20 years earlier than the rest of the population, which is largely preventable. Autistic people die on average 16 years earlier, which is largely preventable, and autistic people are 9 times more likely to die by suicide. Providing public sector staff with the confidence, skills and competence in being able to understand the needs, experiences and behaviours of neurodivergent people and people with learning disabilities could be a critical preventative step in contributing to people receiving the right healthcare and mental health support.

Neurodivergent people and people with learning disabilities are over-represented in the criminal justice system. Training in the justice sector could lead to more equal and effective access to justice for these groups.

Improved understanding and knowledge across the public sector of needs and how to meet those, coupled with improved data collection, are necessary for improved planning and service design and may in time contribute to overall increased efficiency of public services.

Improved data

The proposed LDAN Bill intends to provide for a regulation-making power for Scottish Ministers enabling them to set out what data and information relating to neurodivergent people and people with learning disabilities could be collected and from which public bodies. There would also be a duty on Scottish Ministers to consult with stakeholders, including data specialists and analysts, on these regulations.

A duty could also be placed on Scottish Ministers to publish a report on the collected information annually. The report would have to be published in formats that are accessible for neurodivergent people and people with learning disabilities. The Scottish Ministers could have the ability to delegate the function of publishing the report to another public body, such as Public Health Scotland (PHS).

Key costs could entail improvements to local data collection processes, and centralised analysis and publication of data, which could include the commissioning of new data sets as well as drawing from existing data sets.

Overall, consultation responses were in favour of the collation and use of data, however, there were differing opinions regarding how it should be achieved. Some respondents agreed with the coordination and overseeing of data done centrally. Some respondents disagreed with the idea of the creation of a new Commission(er) with responsibility for data due to costs and noted that resources may be better spent on improving data collection/use and service provision.

Costs could include support to local areas on data collections as well as analysis of collected data and the publication of it. Dependent on arrangements, this may fall on PHS if the function were to be delegated to it. Costs to support local areas in data collection, and central analysis and publication of collected data could therefore fall on PHS, which in turn could be funded by the Scottish Government.

Improved data collection locally and nationally can contribute to better policy, planning and service design as we would have a better understanding of areas of concern outcomes for neurodivergent people and people with learning disabilities, as well as tracking and monitoring improvements. This could then help inform planning and commissioning. Better data can be crucial in identifying the best ways to meet needs at the earliest opportunity and thus potentially reduce overall costs in services.

Independent advocacy

The proposed LDAN Bill intends to ensure that neurodivergent people and people with learning disabilities can access independent advocacy when they need to. Neurodivergent people and people with learning disabilities already qualify for various existing schemes depending on what they may need advocacy support for. The most relevant provision that ensures a broad right of access to advocacy is provided under the Mental Health (Care and Treatment) (Scotland) Act 2003 (the 2003 Act). Under the 2003 Act, anyone who has a mental disorder which by definition includes learning disabilities and, in practice, includes autism, already has a right of access to independent advocacy.

We are working on formulating the most appropriate way an LDAN Bill could strengthen this existing broad right and ensure everyone who would be within the Bill’s scope has such a right. This would require to be accompanied by an appropriate level of Scottish Government funding for effective implementation.

Due to the outstanding questions regarding prevalence of various neurodevelopmental conditions, it is currently difficult to estimate the expected cost of providing a right of access to independent advocacy to everyone who would be within scope of the Bill.

We are also conscious that due to the complexity of the advocacy landscape and the existence of various different avenues for advocacy support, it is difficult to estimate what the increased demand for independent advocacy would be as a result of this Bill proposal, as people may often be able to access advocacy support or specialist advocacy support through other means.

It will also be important to take into consideration how the advocacy landscape will develop following recent and ongoing policy and legal developments such as the Social Care Independent Advocacy Pilot and the Children (Care, Care Experience and Services Planning) Bill.

The current proposal was not directly consulted on and came about in response to the consultation responses that were in favour of a broad right. That said, consultation responses also pointed out a need for more sustainable funding and more trained advocates.

We are progressing work to fully understand: the impact of the various factors noted above on the expected demand for this proposed provision; overlap with existing rights; and acceptable wait times for advocacy services. Simultaneously, there is work ongoing to consider an appropriate funding model.

We expect that this proposed provision could further raise awareness of advocacy, potentially leading to an increase in people accessing existing advocacy schemes available to them. Advocacy organisations may also incur costs in relation to increased demand and recruitment and training of new advocates and staff to meet this. Public services may also incur costs and experience increased pressure as neurodivergent people and people with learning disabilities are supported by advocates to access services they are entitled to.

Improved access to advocacy services is expected to support neurodivergent people and people with learning disabilities to better understand and exercise their rights and have their voices heard. This has the potential to improve the experiences of people, their families and carers and may also contribute to more efficient public services. Advocacy support can help support effective communication between a person and a public service, contributing to the right support being put in place and, potentially, to the prevention of crisis points that may require costlier interventions.

Accountability

As explained in the main publication on our current proposals for potential LDAN Bill provisions, enhancing accountability via the LDAN Bill is a complex issue which requires further consideration before any additional proposals can be set out.

The Bill in and of itself could potentially directly and indirectly bring more accountability to public services. Indirectly via data collection and reporting, Complex care Dynamic Support Registers, identification of communication support needs in the justice system, access to advocacy, and other Bill proposals. And, more directly through proposals for a national strategy, local delivery plans and statutory guidance.

Part of the complexity in solving the issue of enhanced accountability is that there already exists a range of accountability mechanisms which are relevant for neurodivergent people and people with learning disabilities via existing legislation, inspectorates, regulators and Commissioners.

There are options to add to this existing landscape. These options could potentially see the introduction of new public bodies or new roles in existing public bodies. These options are likely to have more significant cost implications. Other options that we are considering involve strengthening existing accountability mechanisms through the Bill proposals for strategies, guidance, local delivery plans and standards. These options are likely to be less costly. We will continue to develop and assess options, taking account of the variation in costs.

The benefits that we would expect to see from enhanced accountability are around improvements to public services and empowerment of individuals. Neurodivergent people and people with learning disabilities are currently among some of the most marginalised in society and have reported finding it challenging to understand, access and realise their rights.

The proposed LDAN Bill presents an opportunity to provide clarity to these groups about what their rights are and how to access them. Furthermore, it is an opportunity to increase compliance with existing laws and, by bringing focus to LDAN issues, the potential to drive policy, planning and services to better meet the needs of neurodivergent people and people with learning disabilities at design and implementation stages.

Complex care

A potential LDAN Bill could make the implementation of the currently voluntarily administered Dynamic Support Register (DSR) a legal duty. This could support improved national data collection.

We are considering if the proposed national strategy, local delivery plans and accompanying statutory guidance could set out actions regarding the DSRs to support greater standardisation. We could also set out a duty for local areas to act upon the data contained within their DSR.

As each local area across Scotland already has a DSR voluntarily, costs are already being incurred under the existing voluntary agreement. Implementation of the voluntary DSRs has so far been absorbed and all individuals recorded on DSRs are already managed within existing budgets. However, additional costs could arise due to potential improvements and additional duties set out by any statutory guidance made under the proposed Bill. There may also be new or further resource implications depending on the scope of the final DSRs. We are progressing work to better understand possible costs as the proposal is further developed. This will also link into actions contained in the Coming Home Action Plan, which sets out actions for improvements to the Dynamic Support Registers.

Work is also ongoing to explore the establishment of a National Support Panel. The Coming Home Action Plan sets out actions in relation to establishing a National Support Panel, including proposals to pilot arrangements. This work will help to inform whether and how a potential LDAN Bill should provide for a statutory Panel.

This work will consider costs associated with the establishment of a National Support Panel. The full extent of the costs of the Panel and any staffing would be determined by its role and functions.

Respondents to the LDAN Bill consultation who were in favour of the complex care related proposals highlighted the benefits of consistency and standardisation; enhanced visibility and accountability; early intervention and planning; and increased ability for local data-driven decision-making.

Respondents in favour of a statutory duty include organisations such as the Care Inspectorate, Mental Welfare Commission, and Royal College of Psychiatrists. There were also responses from individual health boards, Integrated Joint Boards and Local Authorities in favour.

Respondents against largely highlighted issues around implementation costs, administrative burden and privacy and confidentiality concerns. Social Work Scotland and COSLA were against the duty arguing there was a lack of resources to deliver this, and there is no need to legislate for measures which are being adopted voluntarily and would hamper local innovation on managing complex care locally.

We think the benefits of strengthening the complex care policy work would be:

• improved services and supports as a result of being better informed by data and evidence from the DSRs and by expertise provided by the panel;
• increased transparency;
• increased accountability;
• a reduction in delayed discharges and inappropriate out-of-area placements.

Justice – identification of communication support needs

The proposed Bill could place a duty on certain public bodies within the justice sector to support identification of people with communication support needs that may be the result of neurodivergence or a learning disability. This duty is not intended to impose a requirement to identify, screen for, or diagnose a particular condition – instead, it is about identifying and meeting needs.

The duty is proposed to be applied to relevant public bodies in a way to ensure that identification of communication support needs applies in scenarios where people interact with the justice system.

The proposed roll-out of the mandatory training to the justice agencies would be intended to support the relevant public bodies to carry out the proposed identification of communication support needs. The mandatory training could play an important role in equipping staff in the relevant roles to better identify communication support needs and to better understand the impact of neurodivergence and learning disabilities on a person and of their potential support needs.

Better identification of communication support needs may also lead to an uptake in involving advocates and/ or appropriate adults in supporting people interacting with the justice system. While additional advocacy provision for neurodivergent people and people with learning disabilities is also proposed by the Bill, there may also be an increased demand, and associated increased cost for advocacy services provided under the Mental Health (Care and Treatment) (Scotland) Act 2003. Similarly, a better identification of communication support needs and a better knowledge of the available support may potentially lead to an increased need for Appropriate Adults and associated cost.

Justice organisations and others involved in the justice system stressed in their responses to the LDAN Bill consultation, that any need to identify people would necessitate significant and ongoing staff training.

Relevant justice agencies identifying communication support needs as a result of neurodivergence or learning disabilities would support more effective communication with the person and putting in place any required support earlier could contribute to increased access to justice as well as prevention of crisis situations before appropriate support is provided.

Effective, accessible and inclusive communication with people regarding their rights and legal requirements could support reduced (re)offending. As an example, making explanation of bail conditions more accessible could reduce the number of people and costs associated with breaching them.

There are also significant costs attached to (re)offending. There are costs associated with additional court time, Police time and potentially additional pressure on the prison estate and losses to economic activity in the labour market where (re)offenders’ employment opportunities are diminished. These potential benefits would be dependent on numerous factors and are therefore challenging to calculate to a high degree of certainty.