Learning disabilities integrated quality statement

This quality statement outlines the commitment to delivering health and social care that enables fulfilling lives for people with a learning disability; thereby promoting equity of outcomes for:

• children
• young people
• adults with a learning disability across Wales

The Welsh Government is developing quality statements, in line with the National Clinical Framework (2018) and its commitment in a Healthier Wales (2018), to define the outcomes and standard we would expect to see in high-quality services. 

These statements are intended as a guide for all as to what good care should look like across health and social care in Wales. 

Evidence suggests that individuals with a learning disability often experience significantly worse outcomes, and barriers to accessing services, and are at higher risk of experiencing adverse events within health and social care settings, including death.

We also recognise the wider determinants of health for people with learning disabilities requires addressing factors such as:

• housing
• employment
• social inclusion
• education
• access to community support

which collectively shape health outcomes and inequalities beyond clinical care.

Building on previous cross-governmental strategy, improving equity of outcomes for people with a learning disability is a key priority. This will be achieved by delivering integrated services that enable fulfilling lives. 

This quality statement is an integrated description for all health and social care services.

These ambitions are a system-wide and a life-span concern, not the sole responsibility of specialist learning disability services. It is the objective of this quality statement to ensure equal accountability and quality of service provision across the whole system.

It is important to note that those with lived experience, along with their families and carers, education services, the third sector, and the private-sector organisations, all play a central role in delivering on this quality statement. 

A subsequent implementation plan will be developed to translate these aspirations into concrete actions.

Children, young people, and adults with a learning disability are people first and foremost.

There is much written about terminology, definitions, and diagnosis. However, there exists universal diagnostic criterion for determining a learning disability, and Welsh Government urges a nuanced and pragmatic approach to this, reflective of the social model of disability.

As a socially constructed concept, the term has emerged to include a large number of syndromes and many different underlying conditions. It is therefore important to note that a great deal of diversity exists within the population.

People with a learning disability living in Wales make a substantial use of both health and social care services. 

They are often an invisible population, they may not be identified as having a learning disability, data collection methods may not highlight their underlying learning disability, or they are actively excluded from data collection. 

Determining the number of people with a learning disability is an inexact science but it is thought that around 2.2% of the population.

Whilst much is written about the health and social care needs of people with a learning disability, research on best practice service delivery continues to evolve. Whilst some specific guidance exists:

• Guidance for social workers for families where the parent has a learning disability, Welsh Government
• Matrics Learning Disability, NHS Wales
• Reducing Restrictive Practices Framework, Welsh Government 
• Once for Wales Health Profile, NHS Wales
• Challenging Behaviour and Learning Disabilities, NICE
• Review of Day Opportunities and Respite or Short Break Services report, ADSS Cymru

system-wide national guidance has been lacking, resulting in inconsistent and unwarranted variation across Wales. 

To achieve meaningful transformation, there is a need for an integrated approach that addresses these structural and cultural barriers, fosters collaboration across sectors, and prioritises the needs and experiences of people with a learning disability. 

This quality statement sets the direction of travel for that vision. 

Approach

This quality statement was developed by integrating a diverse range of insights and expertise to ensure it is comprehensive, relevant, and grounded in lived and professional experience.

The process adopted a systematic participatory approach involving engagement and refinement with national and regional stakeholders, supported by independent facilitation of engagement with people with a learning disability. This was undertaken within the necessary framework and process of the Duty of Quality. 

Quality attributes 

The quality attributes are shaped around the 12 health and care quality standards, which are intended to provide a clear framework to help plan, deliver, and monitor health and care services in Wales. 

The following standards and enablers are aligned to the Health and Care Quality Standards (2023) in the Duty of Quality (2023). 

Safe 

In order to deliver safe health and social care for people with a learning disability, services clearly identify and understand the population of people with a learning disability that they serve across the lifespan. 

Data in respects to a broad range of outcomes for people with learning disability is readily available and actively used. 

Workforce planning ensures availability of adequate specialist and generalist professionals from the full range of professions across health and social care with the right skills to manage care needs of people with a learning disability. 

Timely

Early identification of people with a learning disability is prioritised to facilitate timely support to families and integrated future needs planning. 

People with a learning disability receive proactive health services, including early detection strategies for known vulnerability in health checks, screenings, vaccinations, and lifestyle advice; all aimed at preventing deterioration in both mental and physical health and minimizing avoidable harm.

Timely access to specialist integrated multi-professional learning disability service provision across the lifespan is provided in accordance with agreed All Wales Integrated Service Models using consistent language.  

The All Wales Integrated Service Models is a nationally agreed approach and structure for joining up of health and social care services to enable coordinated, consistent care across Wales. 

Effective

Care for people with a learning disability is consistent with nationally agreed, locally optimised, high-value, evidence-based pathways across an integrated health and social care system. 

Evidence-based pathways are a defined route through services that coordinates care across professionals and settings.

These integrated health and care systems deliver a broad range of holistic services to enable fulfilling and meaningful outcomes for individuals and their families.  

People with a learning disability are supported across the lifespan to access meaningful daytime opportunities, including:

• education
• leisure
• volunteering
• friendships
• relationships
• paid employment

as part of a holistic approach that promotes independence, purpose, and wellbeing.

Efficient 

The health and social care system prioritise outcomes that matter most to people with a learning disability and their families, ensuring efficient care that enhances fulfilling lives. 

Services are high value, ensuring that every investment enhances quality and maximises individual’s outcomes.

Equitable

Accessible, independent, and person-centred advocacy services are provided to empower individuals to:

• express their views
• understand their rights
• participate fully in decisions that impact their lives

People with a learning disability and their families receive an active offer of accessible and tailored information to help them understand the services available to support them including the proactive offer of services, information and communication in Welsh in line with the Welsh Language Standards

Services are underpinned by active promotion of human rights, equality, disability rights, anti-racism approaches, and methods to combat ableism.

A comprehensive whole-system, co-ordinated approach to reasonable adjustments under pin delivery of services, to the benefit of a range of vulnerable populations. 

Service provision across Wales is equitable, with consistent All Wales Integrated Service Models and evidence-based pathways of care across individual’s lifespans.

Health and social care services will make sure their services work for all people with learning disabilities, including those with protected characteristics.

Person centred

There is a commitment to involve people with a learning disability, and where appropriate their families or carers, at the centre of decision-making in respects of health and social care delivery.

Transitions between services and across boundaries is seamless and well-coordinated, following agreed evidence-based pathways based on person-centred care. 

A unified approach is adopted to strategic priorities, with co-production at its core. 

The environments and buildings used by services are designed to meet the diverse needs of people with a learning disability, incorporating sensory responsive and trauma-informed design.  

People with a learning disability have access to appropriate, high‑quality accommodation throughout their lives, including options that meet changing needs, promote independence, consider personal choice, and offer short breaks.

Leadership

There is a clearly defined whole-system leadership structure for learning disabilities, bridging regional and national boundaries, the policy-research-practice boundaries, with clear lines of communication and accountability, with relevant learning disability expertise at its core. 

This:

• is visible, resilient, and multi-professional
• includes a national team, with a role to:
  • embed quality
  • ensure improvement 
  • monitor outcomes
• includes a named executive board and cabinet members responsible for
  • driving forward strategic priorities
  • reaching beyond adult specialist services, towards a whole-system lifespan service provision for people with a learning disability

Robust succession planning is in place for existing and future leaders, with equity of access to developmental opportunities to enhance learning disability specialist knowledge. 

Workforce 

Workforce information is readily available and actively used to support optimal workforce planning, with sustainable growth to meet demand and pro-active succession planning, including a Welsh language workforce planning. 

For the whole system, there is a well-implemented education framework for all health and social care professionals outlining the knowledge, skills and values relevant to the nature and specialism of their work.   

There is a flexible, multi-professional workforce capable of working across traditional boundaries to support lifespan learning disability specialist service delivery. 

This is in line with agreed All Wales Integrated Service Models and evidence-based pathways, to ensure consistency across Wales in terms of service delivery, workforce structures, in line with the Workforce Strategy for Health and Social Care.

Workforce activity takes account of the roles of private and third sector provider services, volunteers, and carers, as well as statutory services.

Culture 

Wales leads inclusive and values-based approaches to people with a learning disability involving actively challenging ableism and being mindful of the complexities introduced by intersectionality of identities, such as ethnicity. 

This approach requires confronting misconceptions and actively calling out prejudice to foster an inclusive and equitable culture for all.

In line with Welsh language ambitions, services need to ensure increasing use of the Welsh language with this priority population. 

With improvements to population and professional knowledge about learning disability, people, their families, and carers are empowered to self-manage and navigate their care needs, enabling health and social care professionals to deliver optimal care. 

A culture of curiosity, embracing innovation, and championing practice-based evidence as well as evidence-based practice is actively fostered. 

Information

Strengthened intelligence to influence evidence-informed, data-driven practices, and decision-making is key. 

Routine publication of nationally agreed measurable data creates a learning system that drives assurance, continuous improvement and equitable service delivery, enhancing understanding and addressing health vulnerabilities across diverse communities. 

Integrated digital systems are adopted to inform a national dataset, enabling the delivery of safe, high-quality, and consistent services, and ensuring seamless communication and coordinated care between health and social services.

Learning, improvement and research 

An accessible, empowering, and impactful learning culture in learning disability service provision is created and maintained through horizon scanning and showcasing novel approaches. 

Health and social care professionals are actively engaged in delivering local and national quality improvement initiatives which are informed by feedback from people with a learning disability and their families, as well as insights from professional bodies and independent sector organisations. 

This includes consistent approaches to evaluation and sharing learning.

People with a learning disability are involved in:

• planning
• delivery
• monitoring
• reviewing of health and care services and related strategies, including digital and technological innovation

A national mechanism strategically coordinates learning disability research activity across Wales, research is accessible, relevant, and embedded into policy and practice, supporting the generation and application of evidence to improve experiences and outcomes for people with a learning disability.

An overt national operating system for learning disability and associated communication strategy will enable the whole system approach, deliberately wiring component parts for success.

Work develops based on a genuinely integrated approach:

• prioritising coordinating services
• shared accountability
• aligning budgets
• streamlining decision making processes
• establishing collective objectives

This includes strategic commissioning and sustainable provider development to meet the diverse and evolving needs of people. 

Regional Partnership Boards are maximised to oversee integrated service delivery, ensuring that health and social care services are planned and executed cohesively within each region with Pan Cluster Planning Groups and Clusters acting as a key enabler for integrated planning and delivery at county and community level.

A comprehensive implementation plan will be developed to support the achievement of this quality statement. 

This implementation plan will include a priority matrix to identify and address the most critical areas, define clear and measurable steps, as well as assign specific responsibilities.

Regular monitoring and evaluation mechanisms will be established to ensure accountability on delivery. 

We would like to thank all those involved in shaping this document, with particular thanks to colleagues within All Wales People First and NHS Wales Performance and Improvement.