Learning Disabilities, Autism and Neurodivergence Bill: consultation

Section 3: Social Care

What we have heard

For those people who need it, social care, social work and community health are vital supports that enable people to live fuller lives connected to their local communities.

Based on figures from the Independent Review of Adult Social Care (the work that led to proposals for a National Care Service), around 21% of the social care budget (£780m) is invested in services for people with learning disabilities.

People with learning disabilities and neurodivergent people are more likely to present with care and support needs compared to some other groups and those needs may be perceived as more complex by the people providing the services. Without the right support from care practitioners, people are much more likely to need hospital care. This applies in particular to those with complex care needs.

In 2021, the Fraser of Allander Institute published a report on Scotland's adult social care system for people with learning disabilities.^[156] It suggested that not enough is being done in Scotland to deliver social care and support for adults with learning disabilities to enable them to live safe, secure and fulfilling lives.

The key findings of that report include that, the pandemic has been detrimental to the support relied upon by people with learning disabilities and there remain fears that support will not return to the same level it was before the pandemic. The report also found that there are a lot of positive assets in Scotland's social care system for people with learning disabilities. This includes the many dedicated people who work in the sector, and the many creative solutions that have helped improve lives.

The Independent Review of Adult Social Care in Scotland reported in 2021.² It explored the current system of care in Scotland and set out proposals for reform in light of the previous First Minister's announcement that a National Care Service for Scotland would be established.

One of the Review's findings was that in 2019/20, £58m was spent on out-of-area care home placements for adults with learning disabilities, for reasons other than choice, at a median cost of £87k per placement.

The Review reported on several key themes including: access, eligibility and assessment, structure and design of services, planning, commissioning and procurement, workforce and other issues.

We also heard the following themes from people and organisations who have engaged with us so far:

• Positive fulfilment rather than meeting problems– people have a consistent sense of services being built to meet and resolve 'problems' focusing on individuals' deficits, rather than their strengths. The opportunity a National Care Service presents to proactively support and enable a person to develop and build on their strengths and lead fulfilling lives is recognised.
• Involvement in communities- both practitioners and advocacy organisations highlighted the need for social care support to also enable participation where possible.
• Exacerbated need – the adverse impacts of the pandemic on access to social care support, and on the need for such support for neurodivergent people and people with learning disabilities, means that making a positive change is more important than ever.
• Unsuitable accommodation – there is a need to recognise the housing challenges people with complex care needs face (this is explored in a separate section "complex care needs and coming home").

What did LEAP think?

• There should be mandatory training and guidance for social care staff, and qualifications for specialist practitioners working with neurodivergent people and people with learning disabilities.
• There is a need for monitoring and evaluation of how well the needs of neurodivergent people and people with learning disabilities are met, and the impact that services are having. Evaluation of where there may be gaps in the provision of services, or where better links need to be made.
• Better signposting and awareness of social care support available for neurodivergent people and people with learning disabilities.
• Care must be person-led to the greatest possible degree, including through self-directed support.
• Specialist provision for those with complex care needs is delivered across Scotland.
• There is a lack of day opportunities available now, which used to be in place before the pandemic. This is vital to decreasing loneliness and isolation and enabling people to make relationships and feel part of their community.

Where do we want to get to?

• The ambitions of the National Care Service are delivered for those neurodivergent people and people with learning disabilities who need it.
• Neurodivergent people and people with learning disabilities have improved health and wellbeing, live longer lives and are able to choose to be active members of society.
• The health and social care workforce is knowledgeable and skilled in treating and caring for neurodivergent people and people with learning disabilities.
• Neurodivergent people and people with learning disabilities can access care, services and supports through the new NCS without undue stress and the risk of traumatising or retraumatising.
• Neurodivergent people and people with learning disabilities are empowered with knowledge and understanding, choice and control over their care.

What happens now?

There are some legislative rights in place though they do not specifically reference neurodivergent people or people with learning disabilities.

In relation to social care, the Social Care (Self Directed Support) (Scotland) Act 2013, and statutory guidance^[157] sets out a number of rights in relation to how self-directed support should work including for neurodivergent people and people with learning disabilities (adults and children) who access support services. Professionals must:

• treat supported people with dignity and respect at all times, including when they first assess someone for support;
• offer the four SDS options and explain what each of them mean in a balanced and impartial way, and how they would work for the supported person's unique circumstances;
• make sure that supported people have a say in planning what their support looks like and that they have as much involvement as they want in decisions about their support;
• make sure that supported people have enough information to understand what is available and to make the choices which are right for them; and,
• make sure that supported people have opportunities to challenge and ask questions about any aspect of their support, and are given enough time to understand and participate in decisions.

Other relevant legislation includes:

• The Carers (Scotland) Act 2016^[158]
• The Mental Health (Care and Treatment) (Scotland) Act 2003^[159]
• The Adults with Incapacity (Scotland) Act 2000^[160]
• The Children (Scotland) Act 1995^[161]

What can we do about it?

Getting it right for everyone (GIRFE)

As noted in the introduction, GIRFE is currently being co-designed and will be at the heart of our work on health and social care policy.^[162] GIRFE is a proposed multi-agency approach of support and services from young adulthood to end of life care, building on GIRFEC. Our GIRFE approach will help inform whole system working, define the adult journey and respect the role that everyone involved has in providing support planning and support. GIRFE will put the person at the heart of every decision about their own health and social care.

The National Care Service Bill ("NCS Bill")

The NCS Bill is currently progressing through the Scottish Parliament.^[163] Its aim is to improve the quality and consistency of provision of integrated community health, social work and social care services, with human rights at the heart of it. The final shape of the NCS is being developed through co-design with people with lived experience.

Decisions on whether the scope of the NCS includes children's services and justice services will be subject to further detailed consideration and evidence gathering with key partners.

Following initial support from Scottish Ministers and COSLA leaders, discussions have taken place on the basis of a proposed model of shared accountability which means that Scottish Ministers, Local Authorities and NHS Boards will each have their own responsibilities to fulfil within a new national framework. Under this proposal, local authorities would retain service delivery functions, staff and assets. This would improve the experience of people accessing services by introducing a new structure of national oversight to drive consistency of outcomes, whilst maximising the benefits of a reformed local service delivery.

The NCS Bill enshrines our commitment to embedding equality and human rights in the NCS through the NCS Principles. The Principles recognise care and community health services as essential to the realisation of fundamental human rights, and that these services will have equality, non-discrimination, and the dignity of the individual at their heart.

The NCS will be delivered in a person-centred way that respects, protects, and fulfils the human rights of people accessing care support and their carers.

The NCS Bill and work associated with it will bring significant change. The LDAN Bill proposes to recognise the elements where we think more can be done specifically for neurodivergent people and people with learning disabilities.

As part of taking a human rights based approach, we are already working to deliver a range of policies to further realise human rights in the NCS including:

• Developing a NCS Charter of Rights and Responsibilities to empower people to claim their care specific rights
• Establishing a complaints and redress process for the NCS that delivers a fair, accessible and consistent complaints process
• Creating a comprehensive approach to independent advocacy support for the NCS
• Developing a consistent approach to inclusive communication;
• Seeking to understand where services for those with specialist and/or complex care needs may be best met through a national 'Once for Scotland' approach

What can the Bill do?

The Bill could take additional action in the following areas for neurodivergent people and people with learning disabilities. These proposals all relate to the overarching themes section of this paper.

Proposal 1: Neurodivergent and learning disabilities strategies

As discussed in a previous section of this consultation, we are proposing legislative requirements for these strategies in future. For local strategies, we could ask Integration Authorities and local authorities to set out how they and organisations they commission will take into account the needs of neurodivergent people and people with learning disabilities in their workforce planning and workforce training, as well as how they are meeting requirements around inclusive communications and accessibility.

Proposal 2: Mandatory training for the health and social care workforce

In England, the Health and Care Act 2022^[164] introduced a new legal requirement for all health and social care service providers registered with the Care Quality Commission (CQC) to provide employees with training appropriate to their role on autism and learning disabilities – the Oliver McGowan Training.^[165]

We propose to legislate for a similar training requirement for health and social care staff in the LDAN Bill. However, we could take a wider neurodivergent approach to the training so that it focusses on neurodivergence and learning disabilities, and not just autism and learning disabilities.

Proposal 3: Inclusive communication and Accessibility

We propose to legislate for neurodivergent people and people with learning disabilities to be able to request access to alternative means of communication where the offered means of communication will not work for them. This could mean being able to request an online or telephone meeting rather than face to face.

We also propose better access to easy-read versions of public facing communications and documents made by public authorities. This could include a broad duty to make them available on request and an automatic duty to provide them in certain circumstances, such as a duty on NHS Boards and HSCPs to require appointment letters to automatically be produced in easy read.

We also plan to do more work to look at how far existing complaints systems meet the needs of neurodivergent people and people with learning disabilities.