6.1 Innovation and Sustainability Pipeline – Learning Disability Change Proposals.pdf (edinburgh.gov.uk)

Public Health Scotland (PHS) – Insights in Social Care: Statistics for Scotland (2020/21

Population and demographics – Edinburgh Health & Social Care Partnership (edinburghhsc.scot)

Summary Statistics For Schools In Scotland 2021 – gov.scot (www.gov.scot)

Public Bodies (Joint Working) (Scotland) Bill – Parliamentary Business :  Scottish Parliament

Social Care (Self-directed Support) (Scotland) Act 2013 (legislation.gov.uk)

Scottish Household Survey – gov.scot (www.gov.scot)

4. Dynamic Support Register – Coming Home Implementation: report from the Working Group on Complex Care and Delayed Discharge – gov.scot (www.gov.scot)

Vocal Carer Survey 2021

https://www.carersuk.org/media/yswdcjur/state-of-caring-2022-a-snapshot-of-unpaid-caring-in-scotland-final.pdf

https://fraserofallander.org/wp-content/uploads/2023/05/Learning-Disabilities-Scotland-Report.pdf

https://fraserofallander.org/publications/data-on-the-lives-of-people-with-learning-disabilities-in-scotland-short-term-actions-for-change/

A learning disability is a significant, lifelong condition that starts before adulthood, which affects a person’s development, and which means that they may need help to understand information, learn skills and live independently. Having a learning disability means a person may take longer to learn things and often needs support to develop new skills, be aware of risk, understand complicated information and interact with other people. (‘Keys to Life’, 2019).

Learning disabilities are often categorised as mild, moderate or severe. People with a learning disability vary a great deal in the help they may need in meeting their basic needs.

In Scotland it is estimated that there are 23,5841 people with a learning disability. In Edinburgh it is estimated that there are 2,255 people2 (5.0 people per 1,000) with a learning disability (known to the local authority. This is just below the national average of 5.2 people per 1,000 population. 1,823 of these people (5.0 per 1,000 population) are in receipt of services, again slightly lower than the Scottish rate of 5.4 per 1,000 population.

Of the 2,255 people with a learning disability in Edinburgh, 1,970 are aged 18-64 and 285 are 65+.

The Scottish Government report, the ‘Same as You’ indicated that 2% of the population have a learning disability with the vast majority being unknown to services. NHS Lothian Community Learning Disability teams within Edinburgh are in contact with 1,520 people.

According to the Scottish Government Pupil Census data, there has been a marked increase in the numbers of young people with Additional Support Needs (ASN) in recent years, rising from a little over 4% of the total school roll in 2007 to 25% (primary) and 32% (secondary) in 2018. This has driven a growing need for special school and specialist resource base places.

This trend is expected to continue in the future, fuelled by a range of factors including:

–        Increased recognition and awareness of certain categories of ASN leading to an increase in the number of children with ‘pupil plans’

–        Medical advances improving the survival rates of children with very complex medical conditions

–        Increasing incidence of challenging behavioural issues

–        Underlying (and as yet unexplained) increases in the incidence of certain conditions (such as autism).

The increases in complexity of conditions outlined above would be expected to be mirrored in the adult population, allied to gradually extending lifespans, which will also impact the overall number of adult’s requiring support. Whilst there has been a gradual managed decline in provision of traditional day care services in favour of the use of personal budgets, there will continue to be some people who require an environment that is commensurate with their needs.

Adult social care services face considerable challenges in order to address identified current and future demographic pressures. Transport / travel is integral to the delivery of preventative and proactive care services that enable people to participate in their community and neighbourhood.

The way that the Council provides services has changed and will continue to develop and evolve with the impact of adult health and social care integration (as set out in the Public Bodies (Joint Working) (Scotland) Bill 2013) and implementation of the Self-Directed Support (Scotland) Act 2013.

The Scottish Household Survey (2011) estimates there are 65,084 carers living in Edinburgh, this equates to 13.7% of the population. Those who provide 50+ hours per week, amount to 13,761 people.

The first Dynamic Support Register submission to the Scottish Government is due in July 2023 and will be fed into the IIA once collated. 

The Covid 19 pandemic has had a devastating effect on the lives of carers, those they support and the services seeking to support them through extremely challenging times. Closure or significant reduction in support provision for supported people, reduction in the workforce due to workers isolating, and criteria for accessing support becoming available only to those in significant/ critical hardship, have impacted Carers significantly. 

The Act extends and enhances the rights of carers in Scotland to help improve their health and wellbeing, so that they can continue to care, if they so wish, and have a life alongside caring. As required by section 36 of the Act the Scottish Ministers have prepared the Carers’ charter, setting out the rights of carers in or under the Act.

Equalities Examples

Older carers, Sensory loss & deaf blindness, English not a first language

Older carers may have to manage their own long-term conditions and frailty which may impact considerably on their ability to provide care.

The Covid 19 pandemic has had a devastating effect on the lives of carers, those they support and the services seeking to support them through extremely challenging times. Closure or significant reduction in support provision for supported people, reduction in the workforce due to workers isolating, and criteria for accessing support becoming available only to those in significant/ critical hardship, have impacted carers in all areas. National groups are hearing of particular challenges for women who care, employment being impacted, and subsequent financial hardship.

The VOCAL (2021) Carers Survey gathers the views of carers looking after people in Edinburgh (approx. 2/3^rds of respondents) and Midlothian. Its aims are:

• To obtain a profile of carers
• To understand the impact of caring more broadly, in three areas: – Health and Wellbeing – Money and Work – Time away from Caring

The challenges facing carers all appear to have increased since 2017 Respondents report bigger impacts on their health and finances, and more barriers to taking a break. 

This report was produced by Carers Scotland and explores the key findings from their latest State of Caring survey. The annual State of Caring has been carried out for over a decade and is the most comprehensive research into the lives of unpaid carers in Scotland. This report provides an overview of the data from State of Caring 2022 along with the experiences of carers. 

In 2020, the Fraser of Allander embarked on a programme of research looking at the barriers and opportunities for people with a learning disability in Scotland’s economy and wider society. They found that throughout many areas of public life learning disabilities are absent from discussion and invisible in the data. This is the reason why as they now enter our second programme of work, setting out what they know and don’t know about people with learning disabilities, and exploring how the data that they have available can be improved is a key area of focus. 

This report accompanied by ‘Learning Disability Data – Looking Beyond Scotland (Background Report)‘, represent the first outputs from the second programme of research looking at the lives of people with learning disabilities.

Whilst their previous programme of work highlighted barriers and inequalities, this programme is aimed at finding solutions and evidence to enable change. This starts with this report, where they have taken a closer look at the data sources which currently exist in Scotland, to focus in on what we know and don’t know about people with learning disabilities and explore how the data can be improved.

There are a range of community-based teams (e.g., Local Area Coordination Team) and teams based within the Royal Edinburgh and Associated Services (REAS). These include: four community learning disability teams, based in localities; the Mental Health Intensive Support Team (MHIST) which support adults with learning disabilities and mental health difficulties; Forensic Assessment Support Team (FAST), which supports people with forensic needs and the Specialist Positive Behaviour Service (PBS) team supporting people with complex needs.

Care and Support is generally delivered across three core service areas:

• Day support
• Housing Support and Care at Home
• Breaks from Caring/ short Breaks

Finally, there are hospital-based services at the Royal Edinburgh Hospital (REH), which provide acute psychiatric and mental health services, including 33 inpatient beds for assessment and treatment of people with a learning disability. In line with the strategic direction, in August 2017 the EIJB agreed that the number of learning disability beds that Edinburgh commissioned at the Royal Edinburgh Hospital will decrease from the current level of 33 to 10 by the end of 2022. This timeline has now been extended for review in 2024. There are currently 19 people within REH and work towards discharge is progressing well.

Keys-To-Life-Implementation-Framework. 2019-2021

Vocal survey highlights 72% of respondents finances were impacted as a result of their caring role with 64% having stopped working completely or reducing their working hours in order to provide unpaid care. The proportion of carers not in employment, education, or receiving a pension has increased from 25% in 2017 to 34% in 2021.

Statistics show that people with learning disabilities do not yet enjoy the same life chances as others.

The Keys to Life worked with The Scottish Commission for Learning Disability – www.scld.org.uk  and policy advisers, with the support of the Royal Society of the Arts’ Action and Research Centre – https://www.thersa.org/action-and-research  and explored how best to deliver the vision of The keys to life and A Fairer Scotland for Disabled People – into sustained improvement in the lives of people with learning disabilities.

The key themes – wellbeing, living, working and learning – were discussed in detail at a series of engagement events which took place across the country.

Adult Social Care: independent review – gov.scot (www.gov.scot)

A National Care Service for Scotland: consultation – gov.scot (www.gov.scot)

The same as you? 2000

The keys to life 2013

Keys-To-Life-Implementation-Framework. 2019-2021

 Coming Home Implementation Report

Scottish Commission for People with Learning Disabilities

06839-annual-review-2022.pdf (scld.org.uk)

New Models for Learning Disability Day Support Collaborative

New Models of Day Support – phase 3

• Culture shift values human rights, lived experience, co-production, mutuality and common good.
• Shift attitude towards technology and data sharing to improve people’s experience of social care to help them live independently.
• Focus on improving performance through greater transparency, innovation and use of digital technology.
• Implementation of the Fair Work principles to improve workers’ working conditions; peer support and supervision; and a more consistent approach to providing high quality training for staff.
• Greater integration at a local level driven by better partnerships, collaboration and effective local delivery.
• People must be able to access support at the point they feel they need it.
• Move away from time and task and defined services to commissioning based on quality and purpose of care – focused upon supporting people to achieve their outcomes, to have a good life and reach their potential, including taking part in civic life as they themselves determine.
• Reducing use of institutional/residential care – increased opportunity for support at home.
• Involving people and their families more in decisions
• Including wider community supports in care
• Professionals working together better across traditional boundaries of health, social care support and other services such as housing.

There has been significant consultation and engagement on a national level with people with a learning disability, first with ‘The Same As You?’ (2000), and more recently through the ‘Keys to Life’ (2013 & 2019). These documents, combined with the ‘Coming Home Report’ (2018) and recently published ‘Coming Home Implementation Plan’ (2022), clearly lay out the priorities for people with learning disabilities.

The Commission focus has been on developing individual lived experience led approaches; a board of people with lived experience to work with Scottish Government on the Human Rights Bill, a team of Rapporteurs whose aim is to change the perceptions in society, a board of Digital Navigators whose focus is digital transformation for people with learning disabilities. Concurrently, they have also developed networks of practitioners and family carers in positive behaviour support and campaigned to reduce restraint and seclusion in Scotland.

The Edinburgh Learning Disability Advisory Group (ELDAG) meet on a monthly basis with membership including people with Learning Disabilities, the Edinburgh HSCP Planning and Commissioning Officer for Learning Disabilities, and advocacy representation. Information on the review of LD services has been regularly shared with the group feeding back valuable lived experiences.  Consultation will be ongoing with this group and an IIA meeting is arranged for 8^th September to further inform this IIA.

Health Improvement Scotland launched a programme in 2021 called New Models of Day Support – this programme was designed to support Partnerships to define and consider approaches to day support for adults who have learning disabilities. Consultation through questionnaires, meetings and events have taken place with a range of stakeholders including; young people, carers, education, health and social care colleagues and partner organisations. The summary of emerging themes presents peoples views and voices about what is important to lead a good life.

New Models of Day Support findings from consultation inform the wider Learning Disability Review and Commissioning approaches.

Learning Disability Services Mapping Exercise

 Coming Home Implementation Report

‘We deserve better’: new report on healthcare barriers (learningdisabilitytoday.co.uk)

RHO-Executive-Summary-LD-Report.pdf (nhsrho.org)

• There were significant weaknesses in the design, structure, implementation and oversight of key processes, including the assessment of people’s needs and case management.
• Approaches to early intervention and prevention were uncoordinated and inconsistent.
• Long standing significant delays in discharging people from hospital, people waiting for assessment of their care needs and meeting vulnerable peoples’ unmet needs had recently begun to improve.
• Self-directed support had not been implemented effectively.
• There was insufficient support for unpaid carers.
• Prioritised actions will be required to ensure the needs of people and carers are met, and their wellbeing improved, more consistently.

A local mapping exercise undertaken across health and social care services and roles to: understand work, tasks and pressures within the Community Learning Disability Teams (CLDT), specialist teams (MHIST, FAST, PBS) and Local Area Co-ordination (LAC); understand areas of duplication, gaps, team capabilities and capacity, with a view to recognising where change is needed.

Duplication Conclusion:

o   Most of the recognised duplication come from structural and organisational issues.

o   The impacts of these gaps mainly affect young people and people with complex care needs due to the lack of resources, often as a result of duplication.

o   There is a significant amount of tasks being completed by staff members whose expertise could be better spent in areas of high demand and a need for consideration of staff at support worker level.

Gaps – Conclusion:

o   Most of the recognised gaps are relating to people with complex needs and young people, although similar to areas of duplication in order to address these gaps, structural and organisational issues need to be considered.

o   Removing areas of duplication would offer resources to work towards filling these gaps.

o   Investment in supporting staff and building their knowledge and skills, alongside ensuring adequate resources is essential to ensuring staff wellbeing and building a resilient and sustainable workforce to provide higher level of community support, assessment and treatment.

*Local data collection is ongoing to continue to inform progression of this work.

 The Scottish Government (Coming Home Report 2018 and Implementation Report 2020) highlight the significant number of people with learning disabilities in Scotland who are inappropriately living in institutional hospital settings or out of area. They highlight a clear failure to uphold people’s human rights with restricted life opportunities including access to the community, work or meaningful day activities, personal relationships, and autonomy. Locally there is increasing demand for supporting people with learning disabilities and complex needs who are living with unpaid carers or supported by local providers who are at risk of placement breakdown. Often in these circumstances out of authority placements are sourced or people are inappropriately admitted to hospital as there are limited intermediate or short-term options locally.

People with a learning disability from ethnic minority backgrounds die at an average age of just 34, compared to an average age of 62 for white people with learning disabilities.

This significantly shorter life expectancy is triggered by poorer healthcare access, language barriers, cultural and religious insensitivity, and a lack of information during transitional care in hospital and home.

This new, stark research is published in a report titled We deserve better: Ethnic minorities with a learning disability and access to healthcare, which reviews the barriers to healthcare faced by people with a learning disability from ethnic minority backgrounds

Literature, which has spanned over two decades, has acknowledged that the intersection of ethnicity and disability, two marginalised identities in society, results in compounded discrimination. Such discrimination exacerbates inequalities in relation to health outcomes and healthcare among people from ethnic minority backgrounds with a learning disability. These existing disparities are due to the social determinants of health, which are further fuelled by discrimination, racism and marginalisation. In turn, people with a learning disability from ethnic minority backgrounds experience poorer access and experiences of healthcare services and poorer health outcomes

Draft Strategic Plan 2025-2028 – Edinburgh Health & Social Care Partnership

The same as you? 2000

The keys to life 2013

Keys-To-Life-Implementation-Framework. 2019-2021

The keys to life 2013

‘Coming Home’ Report Published – The keys to life

 Coming Home Implementation Report

Coming Home Implementation Report

Adult social care 2022 to 2023: joint statement of intent and next steps – gov.scot (www.gov.scot)

Human Rights Based Approach | Scottish Human Rights Commission

A Fairer Scotland for Disabled People: delivery plan – gov.scot (www.gov.scot)

The Good Lives Model of Offender Rehabilitation – Information

qnld-community—second-edition-standards.pdf (rcpsych.ac.uk)

Quality Network for Learning Disability Services (QNLD) Standards for Adult Community Learning Disability Services (2021)

QNI-and-QNIS-Voluntary-Standards-for-Community-Learning-Disability-Nurse-Education-and-Practice.pdf

Social Care (Self-directed Support) (Scotland) Act 2013: Self Directed Support (SDS) Statutory Guidance (www.gov.scot)

Social Work (Scotland) Act 1968 (legislation.gov.uk)

Social Care (Self-directed Support) (Scotland) Act 2013: Self Directed Support (SDS) Statutory Guidance (www.gov.scot)

Social Care (Self-directed Support) (Scotland) Act 2013: Self Directed Support (SDS) Statutory Guidance (www.gov.scot)

Social Work (Scotland) Act 1968 (legislation.gov.uk)

Self-directed Support Framework of Standards, including practice statements and core components (www.gov.scot)

https://scottishtransitions.org.uk/7-principles-of-good-transitions/

06839-annual-review-2022.pdf (scld.org.uk)

British Institute for Learning Disabilities Community of Practice

Positive Behaviour Support (PBS) | bild

NICE Guidelines:

Behaviour that challenges

Challenging behaviour and learning disabilities prevention and interventions

LD and Behaviour that Challenges. Service design and delivery

1.    I experience high quality care and support that is right for me.

2.    I am fully involved in all decisions about my care and support.

3.    I have confidence in the people who support and care for me.

4.    I have confidence in the organisation providing my care and support.

5.    I experience a high quality environment if the organisation provides the premises.

A further version of the drat Edinburgh HSCP Strategic Plan 2025 – 2028 is currently out for a final period of consultation.

The same as you? was launched by the Scottish Executive in May 2000 and reviewed the services then available to people with learning disabilities and people on the autism spectrum. It said that people with learning disabilities had the right to be included in, and contribute to, society, to have a voice, and to have access, with their families, to support to live the life of their choosing. It contained 29 recommendations intended to drive a change programme to improve services.

This was the catalyst for Scotland’s long stay Learning Disability hospital closure programme. The need for deinstitutionalisation, and alternative care in the community was made clear and backed with significant financial support. The aspiration was clear, all long-stay hospitals were to close by 2005. However, for a small number of Scottish citizens – namely people with complex care needs, hospital has still taken the place of a home. These people are facing lengthy delayed discharges from modern-day clinical settings and some have been sent to places far away from their homes. Hospital wards, including Assessment and Treatment Units, or out-of-area care facilities are often institutional in nature. They are not a home.

The keys to life Priorities are guided by four rights-based strategic outcomes which are closely aligned to the strategic ambitions in Scotland’s disability delivery plan, A Fairer Scotland for Disabled People:

A Healthy Life: People with learning disabilities enjoy the highest attainable standard of living, health and family life.

Choice and Control: People with learning disabilities are treated with dignity and respect, and are protected from neglect, exploitation and abuse.

Independence: People with learning disabilities are able to live independently in the community with equal access to all aspects of society.

Active Citizenship: People with learning disabilities are able to participate in all aspects of community and society.

The Scottish Government’s Keys to Life (2013) referenced the long-standing issue of delayed discharge and out-of-area placements as a result of wider system failure. One of the priorities of the Keys to Life is that all adults with learning disabilities, including those with complex needs, experience meaningful and fulfilled lives. This includes where individuals live, as well as the services they receive. Some people with learning disabilities and complex needs are living far from home or within NHS hospitals; there is an urgent need to address this issue.

The Scottish Government commissioned a two-year project to look specifically at the support provided to people with learning disabilities who have complex needs. The focus of the project was to identify the number of people involved, and also to suggest support solutions for individuals with learning disabilities who have complex needs, and who are either placed out-of-area, or are currently delayed in hospital-based assessment & treatment units. The Scottish Government wants to support Health and Social Care Partnerships (HSCPs) to find alternatives to out-of-area placements, and to eradicate delayed discharge for people with learning disabilities. Their vision for people with learning disabilities and complex needs within Scotland is that everyone is supported to lead full, healthy, productive, and independent lives in their communities, with access to a range of options and life choices.

The Mental Welfare Commission’s No Through Road report (2016) alongside Dr Anne MacDonald’s Coming Home report (2018), both highlighted the significant number of people with learning disabilities who are delayed in hospitals in Scotland, sometimes for many years, despite being clinically assessed as ready for discharge into community settings.

The actions to be taken forward from the Coming Home Implementation report, published by the Scottish Government, include setting up a new national register to improve monitoring of those at risk of hospital admission or inappropriate placements.

Vision: The human rights of everybody with complex care needs are respected and protected and they are empowered to live their lives, the same as everyone else.

Mission Statement: By March 2024 we want and need to see real change with out-of-area residential placements and inappropriate hospital stays greatly reduced, to the point that out-of-area residential placements are only made through individual or family choices and people are only in hospital for as long as they require assessment and treatment.

Scotland must provide the best possible services for people with a learning disability to enable them to lead high quality lives within their family and/or their community where they experience personalised support consistent with a Human Rights Based approach.

The current situation must change. It is unacceptable that people are spending large portions of their lives in hospitals or other settings if they are medically fit for discharge. ‘Care in the Community’ as first mandated in The Same as You (Scottish Executive, 2000) has still not been universally realised and we are failing those who are still delayed in hospital or in inappropriate out-of-area placements through the lack of provision of proactively-planned quality care and housing in community.

All people with complex care needs must receive excellent continuity of care. Everybody with a learning disability and complex care need who can should be able to live in their own home, supported by specialist staff. Where there is a genuine therapeutic reason for individuals to stay in hospital they should receive appropriate specialist support in the short term, with a clear plan in place for them to transition out of hospital and back into their community. A nowhere else to go but hospital scenario will be extinguished.

The wishes and needs of the individual must be at the heart of this process.

To achieve this vision will require a transformational change through committed thinking and planning and genuine collaboration across the entire system. We recommend a new framework, underpinned by strong local and national partnerships, to deliver the innovative and quality services needed to support people with learning disabilities and complex support needs who are placed in unsuitable out-of-area placements, or who are inappropriately admitted to hospital, due to breakdown in their community-based support. This must happen without delay and there must be real visibility and accountability going forward.

Through the improvements set out within the Scottish Governments Statement of Intent, people can access the right care in the right setting, whether that is at home or in an acute setting. The aim is to enhance capacity across the system allowing those requiring acute care to receive it when they are most in need as well as those who require care and support when they leave hospital.

Over the next year, the Scottish Government will:

• Continue to drive forward the Discharge without Delay Improvement Programme, and ensure that multi-agency discharge planning starts as soon as possible in the person’s journey, involving all parties from health, social care, housing and third sector, as well as the individual and their family
• Continue to embed human rights in the provision of social care support
• Ensure that people have a voice in how social care is delivered
• Take a preventative approach, including through the development of the Getting It Right For Everyone (GIRFE) practice model
• Establish a Social Care Workforce Programme to continue to deliver the type of improvement the social care workforce requires
• Continue to deliver our Fair Work agenda, ensuring those who work in care are offered fulfilment, security, opportunity, respect and effective voice
• Support learning and development through a working group jointly led by NES and SSSC
• Publish a Carers Strategy under a Scottish Government banner and work with a range of partners to implement the actions it recommends
• Establish a National Improvement Steering Group, jointly chaired by COSLA, SOLACE and the Scottish Government, to lead on the development of an overarching National Improvement Programme for Social Care and Community Health
• Publish revised Self-Directed Support (SDS) guidance and establish an improvement programme to implement it consistently

Taking a human rights based approach is about making sure that people’s rights are put at the very centre of policies and practices. The PANEL principles are one way of breaking down what this means in practice.  These are: Participation, Accountability, Non-Discrimination, Empowerment and Legality

The Scottish Government recognise that our homes, our transport, our workplaces, our public services and our local environments are all too often designed or operated in ways that can exclude disabled people. Inaccessible communication, negative attitudes, low expectations, discrimination and inequality impact in ways which interact and affect the chances of disabled people – even to have social connections and human interaction. The Scottish Government recognises that we can only find effective solutions to the problems and barriers faced if we draw on the lived experience of disabled people, and work with disabled people to develop our policies and approach to find ways of solving problems and dismantling barriers.

The Good Lives Model (GLM) is a framework of offender rehabilitation which, given its holistic nature, addresses the limitations of the traditional risk management approach. The GLM has been adopted as a grounding theoretical framework by several sex offender treatment programmes internationally and is now being applied successfully in a case management setting for offenders.

The GLM is a strengths-based approach to offender rehabilitation, and is therefore premised on the idea that we need to build capabilities and strengths in people, in order to reduce their risk of reoffending. According to the GLM, people offend because they are attempting to secure some kind of valued outcome in their life.

The GLM is a strength-based rehabilitation framework that is responsive to offenders’ particular interests, abilities, and aspirations. It also directs practitioners to explicitly construct intervention plans that help offenders acquire the capabilities to achieve things and outcomes that are personally meaningful to them.  It assumes that all individuals have similar aspirations and needs and that one of the primary responsibilities of parents, teachers, and the broader community is to help each of us acquire the tools required to make our own way in the world.

In recent years and with the government’s ‘Transforming Care’ agenda, there has been a great deal of emphasis on the provision of appropriately resourced community services for people with a learning disability. There is a wide variety of available teams and services at least partly, due to the variation in local arrangements, partnerships with other providers and the complexity of care for people with a learning disability. Nonetheless, and indeed, as a result of this variability, there is a need for nationally accepted standards towards which teams can aspire to. The standards are designed to be applicable to community learning disability services for adults and can be used by professionals to assess the quality of a team. The standards may also be of interest to commissioners, people with learning disabilities, carers, researchers and policy makers. These standards have been mapped against the ‘Five Essential Learning Disabilities Health Teams Roles’ outlined by the Learning Disability Professional Senate in their paper ‘Delivering Effective Specialist Community Learning Disabilities Health Team Support to People with Learning Disabilities and their Families or Carers, 2019:

• Supporting positive access to and responses from mainstream services.
• Enabling others to provide effective person-centred support to people with learning disabilities
• Direct specialist clinical therapeutic support for people with complex needs
• Responding positively and effectively to crisis
• Quality assurance and service development in support of commissioners

With 1.5 million people with a learning disability in the UK, (ONS, 2019; Mencap, 2019) the projected priorities of the NHS Long Term Plan (NHSE/I, 2019) aim to address health inequalities, unmet needs and to ensure people with a learning disability and/or autism receive better support. They present as a set of benchmarks and guidance to inform current and future education and practice requirements expected of a registered nurse on completion of a post registration Community Learning Disability Nurse Specialist Practitioner Qualification. It is anticipated that these standards will be embraced to inform the advanced level career progression point for nurses choosing Community Learning Disability Nursing.

These standards are therefore timely in terms of raising the profile of the advanced specialist expertise of Community Learning Disability Nurses who hold a NMC recordable Specialist Practitioner Qualification. It is anticipated that these standards will be embraced to inform the advanced level career progression point for nurses choosing Community Learning Disability Nursing. These standards are therefore timely in terms of raising the profile of the advanced specialist expertise of Community Learning Disability Nurses who hold a NMC recordable Specialist Practitioner Qualification (SPQ). Their role is central to the provision of health and care in the UK for people with a learning disability and/or autism, their families and carers, and as autonomous practitioners they are pivotal in ensuring best care and support.

Self-directed support is the way that all social care must be delivered in Scotland. The Social Care (Self-directed Support) (Scotland) Act 2013 and detailed Practitioner Guidance set out the principles and policy for delivering Self-directed Support (SDS). However, since the legislation was enacted, Care Inspectorate and Audit Scotland scrutiny has found that SDS has been implemented partially and inconsistently across Scotland. Evidence shows that some local areas have embedded SDS well, while others are challenged to make the changes required for successful SDS implementation.

There are a wide range of people, organisations and authority functions with responsibilities concerning the assessment of needs or the provision of Self-Directed Support (SDS). The supported person’s voice and wishes must be at the centre of all conversations and decision-making about their support, taking into account relevant factors such as their disability, age and the potential for another person to assist them, for example to help meet communication and accessibility needs.

Authorities should therefore consider how their functions relating to social care provision work together to facilitate the key stages in a supported person’s pathway from initial contact through to the provision and review of support. Authorities should also take steps to provide the relevant training, support and processes each function needs to be able to take a person-centred and human rights-based approach to fulfilling the duties described in the 2013 Act.

Good quality assessment continues to be central to achieving better outcomes with and for people with social care needs, and to ensuring consistency and transparency in decision making. Section 12A of the Social Work (Scotland) Act 1968 places a duty on local authorities to assess any person who appears to need “community care services” and then to decide whether the assessed needs “call for the provision” of such services. Eligibility criteria provide guidance as to the circumstances that the local authority regards as requiring the provision of services. In reaching such decisions, the Council requires its staff to have regard to its eligibility criteria.

Unpaid Carers – The unpaid carer provides care and support to a family member or friend, and may be an adult or a child. They may provide a wealth of information, expertise and guidance. Carers may be guardians or attorneys for the individuals they support, or friends helping them to access the statutory support they need. Carers are entitled to have their views taken into account when authorities assess the needs of the cared for person, including when and how to provide services to the cared-for person. The relevant authority should ensure that carers are aware of these rights.

Practitioners – The social worker should take steps to ensure that  assessment is conducted in line with social work legislation. They should consider any wider legal duties beyond the duties provided in social work legislation for instance, in a crisis situation or where the person‘s safety is at risk. Practitioners should ensure that the person‘s support plan is comprehensive and that the support plan meets the identified needs of the supported person. They may arrange for some additional assistance so that the supported person can play a full part in the assessment or support planning process. They must ensure the supported person is involved as far as is possible, and their voice and wishes respected. The practitioner or local area team should be provided with the appropriate support and guidance from their organisation to ensure that they are empowered to use their professional judgement to apply appropriate discretion in line with Standard 8 (Worker Autonomy) in the SDS Framework of Standards 43. Assessment, support, planning and review systems and processes should be personalised, recognising people’s strengths, assets and existing community supports, and result in agreed personal outcomes.

Decision Makers – Senior decision makers shape the culture and conditions in which important decisions are made about a supported person‘s care and support, including positive approaches to risk enablement and management. They should therefore take steps to ensure that guidance, training and culture of the organisation is consistent with the spirit and statutory principles of the 2013 Act. They should support front line professionals and providers to work closely with individuals in a flexible, autonomous and innovative way. The relevant authority and/or Health Board should ensure that their staff are made aware of their duties and powers in relation to assessment functions.

Commissioning – The Audit Scotland Social Care Briefing114 and the IRASC discuss the need to improve the impact of commissioning and procurement, including the need for ethical commissioning that routinely involves peoples with lived experience, carers, local communities, providers and other professionals in the co-design and redesign, as well as the monitoring of services and supports. This is the basis of a collaborative, rights-based and participative approach, which also takes into account factors beyond price, including fair work, terms and conditions and trade union recognition. The authority should view its commissioning role as being a facilitator of service design and provision, that provides choice. This involves both providing information about choices and commissioning and putting in place a range of sourcing models and (where appropriate) procurement processes that allow people as much choice of type of support and provider as possible. The authority should adopt a person-centred approach based on the principles of involvement and co-production. It should be transparent and should publish its approach either as a separate document or as part of its commissioning strategy.

It is important that social workers and duty bearers consider the impact of decisions on people across all protected characteristics (including those not covered by the 2012 Equality Impact Assessment).

Commissioning in the context of the 2013 Act is not simply about ensuring there is a transaction between a supported person and a provider. It should be set in the wider context of the relevant authority‘s strategic planning activity including community capacity-building, prevention and universal services. Strategic commissioning will consider the most appropriate way to arrange for the provision of services and support to meet the needs of the local population. This may result in a decision to deliver services, in-house, via a grant, by putting in place public contracts, or forming an alliance or partnership or a combination of all or some of these.

Eligibility criteria are used by local authorities to deploy resources in a transparent way that ensures that those resources are targeted to adults in greatest need.. A national framework for eligibility criteria for social care for older people was agreed by the Scottish Government and COSLA in 2009.98 This framework is used by local authorities to determine whether an adult assessed as needing social care support requires resources to be provided in order to meet those needs. The criteria are not required by statute, but most local authorities have used them as a method of allocating resources. As part of the Joint Statement of Intent, Scottish Government and COSLA both recognised the need to ensure that the use of eligibility criteria adequately enables an early intervention and preventative approach to social care, and subsequently agreed to overhaul the current mechanism of eligibility criteria. This work continues to develop.

Eligibility guidance states as a key principle, that ‘the prioritisation process should target resources towards responding to adults at critical or substantial risk as regards independent living or wellbeing, whilst not excluding consideration of the benefits of preventative support and less intensive care services for people at less risk’. The authority‘s approach to making decisions about a person‘s access to support – whether it applies formal eligibility criteria or not – plays a key role in the subsequent assessment, the provision of choice under the 2013 Act and the provision of support following that choice

The SDS Framework of Standards (Standard 2: Early Help and Support; 6: Risk Enablement and Standard 11: Consistency of Practice), which emphasises the importance of a positive and preventative approach that shifts focus from crisis intervention towards what matters to the person and their quality of life. Social workers, when carrying out an assessment, should consider the whole experience of the supported person. The assessment should consider the needs and the outcomes of the person, approaching decision-making in a way that manages risks in an enabling and positive way. In addition, it should consider human rights as part of its development of the relevant strategies, protocols, procedures and guidance associated with social care provision Under Sections 6 and 17 of the 2013 Act, the authority must take reasonable steps to help the supported person to play a full part in their assessment, to understand the various choices available to them and to decide how and what ways they would like to arrange their support.

Principle 6: Families and carers need support (family wellbeing needs to be supported)

Young people’s relationships with their family can be complex, particularly where parents or carers have an ongoing role in providing personal assistance and where disability related allowances or benefits are an important contribution to the household income. The needs and roles of family members and carers are also likely to change as the young person they care for grows up. Parents and carers are usually central to the continuing care of young people with additional support needs and are the people most likely to provide guidance and support during transitions. Many parents and carers feel they must fight for support and can experience ‘burn out’ as they deal with the many new challenges associated with transitions. Too often, parents and carers describe their experience of supporting a child through transition as like ‘falling off a cliff’ or a ‘black hole’.

The Scottish Commission for People with Learning Disabilities (SCLD) is a pioneering Human Rights Defender organisation focusing on empowering people with learning disabilities to live the life they want. “Human Rights Defender” is a term used to describe people who, individually or with others, act to promote or protect human rights in a peaceful manner. As a Human Rights Defender we focus and anchor our organisational development on ensuring that everything we do empowers people with learning disabilities and those who support them to make real and tangible changes to their lives using a human rights framework.

The policy and legislative landscape in Scotland is complex and is developing continually and our main areas of focus continue to be the development of the Scottish Human Rights Bill (which will set the context for human rights incorporation in Scotland) and the Learning Disability, Autism and Neurodiversity (LDAN) Bill which should ensure accountability and enforcement of specific duties to ensure people with learning disabilities in Scotland have their human rights respected, protected and fulfilled.

Positive Behaviour Support (PBS) Community of Practice Scotland supports the implementation of PBS in Scotland. The aim of the PBS Community of Practice is to develop best practice for those supporting people with learning disabilities. We know that all behaviour is communication and the appropriate support at the right time will help people to thrive, be happy and fulfil their potential. PBS supports human rights and promotes respect, dignity, inclusion and a life without unnecessary restriction. PBS means treating people equally and working in partnership with people with learning disabilities and their families. Ultimately, the aim of PBS is for people with learning disabilities to live without unnecessary restriction, good practice is shared, and policy is influenced. The PBS Community of Practice Scotland is delivered by SCLD on behalf of Scottish Government.

It is relatively common for people with a learning disability to develop behaviour that challenges, and more common for people with more severe disability. Prevalence rates are around 5–15% in educational, health or social care services for people with a learning disability. Rates are higher in teenagers and people in their early 20s, and in particular settings (for example, 30–40% in hospital settings). People with a learning disability who also have communication difficulties, autism, sensory impairments, sensory processing difficulties and physical or mental health problems (including dementia) may be more likely to develop behaviour that challenges.

Highlights the importance of Psychological wellbeing through PBS to reduce mental ill health and/or challenging behaviour.

Health and Care (Staffing) (Scotland) Act 2019 (legislation.gov.uk)

Health and Care Staffing in Scotland | Turas | Learn (nhs.scot)

Framework | Turas | Learn (nhs.scot)

Our workforce is the most important asset in the delivery of safe and effective care to the people of Scotland. Our skilled and compassionate health and social care employees make up the largest workforce in Scotland

To deliver safe and effective care, we need to ensure there are the right people with the right skills in the right numbers and in the right place at the right time.

The introduction of the Health and Care (Staffing) (Scotland) Act 2019 provides the statutory basis for the provision of appropriate staffing in health and social care services, This enables safe, high quality care and improved outcomes for staff as well as people being supported.

The Health and Care Staffing in Scotland Knowledge and Skills Framework reflects the guiding principles for health and care staffing.   It will support staff in understanding the requirements of  their role in the application of the Act.

The Health and Care Staffing in Scotland Knowledge and Skills Framework has been developed to reflect the guiding principles for health and care staffing.