Guidance summary

Context

In the UK, a learning disability is defined by the Department of Health and Social Care (DHSC) (2001) as: “a significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with a reduced ability to cope independently (impaired social functioning), which started before adulthood.”

A learning disability is different for everyone. The degree of disability can vary greatly, being classified as mild, moderate, severe or profound. In all cases, a learning disability is a lifelong condition and cannot be cured.

A learning disability is different to a learning difficulty, which is a reduced ability for a specific form of learning and includes conditions such as dyslexia (reading), dyspraxia (affecting physical co-ordination) and attention deficit hyperactivity disorder (ADHD). A person with a learning disability may also have one or more learning difficulties (Gov UK, 2023).

Additionally, there are a number of conditions and neurological disorders that often involve or cause some type of learning disability, including Down’s syndrome, autism, meningitis, epilepsy or cerebral palsy.

People with learning disabilities continue to experience poor health outcomes in comparison to the rest of the general population, leading to lower life expectancy and a higher number of avoidable deaths (42% compared to 22% of the general population) (House of Commons Committee Report, 2024).

According to data from the Local Government Association (LGA) and the Association of Directors of Adult Services (ADASS) around 1.04 million people aged 15 to 64 in England have learning disabilities or autism (LGA, 2024).

This group experience disproportionate levels of inequality and their quality-of-life outcomes are lower than it is reasonable to expected in the 21st century. Prior to COVID-19, (Heslop, 2014) revealed a lack of awareness, understanding and skills amongst the health and social care workforce about the health risks facing people with learning disabilities, and how to ensure that that they receive the right care.

Background

SCIE’s ‘Tackling inequalities in care for people with learning disabilities and autistic people’ project explored the inequalities faced by people living with learning disabilities and autistic people, such as delays in diagnosis, lack of reasonable adjustments, and ‘diagnostic overshadowing’.

SCIE worked with ‘The SCIE Fliers’ a co-production group of people with learning disabilities and autistic people, to understand people’s experiences of the COVID-19 pandemic to draw out lessons and opportunities for learning that could be shared to support the sector and ultimately support improvements in care and support. This led to the development of the ‘Am I invisible’ materials which feature on the SCIE website.

During this project, SCIE worked alongside people with learning disabilities and autistic people to understand their experiences and views on what needs to be different. SCIE also facilitated a series of events with different sector partners, to showcase the work developed by the co-production group, and develop the conversation further.

This guidance document brings together learning from our discussions and work with commissioners, service providers and people with learning disabilities. We recognise that some of the challenges that people with learning disabilities and autistic people experienced during and after the pandemic are not new. Many of those challenges were prevalent before the COVID-19 pandemic, an example of this is the winter pressures on the wider system. 

We aim to create an understanding of the inequalities and the areas that health and social care services can act upon to address them, and to close the gap in skills and knowledge in the health and social care workforce.

This guidance is not exhaustive and builds on the tools available across the health and social care sector to support people with learning disabilities and autistic people. While reference has been made to specific documents throughout, feedback from people with learning disabilities and autistic people has been paramount in developing this guidance.

Who will benefit from this guidance?

• Commissioners and providers of health and social care services for people with learning disabilities and autistic people.
• Practitioners from the health and social care sector working with people with learning disabilities and autistic people.
• Practitioners and providers working with people with learning disabilities and autistic people in wider settings, including education, housing, the voluntary and community sector, employment and criminal justice services.

What will you gain from this guidance?

• The knowledge of practical steps you can take to improve experiences of care for people with learning disabilities and autistic people.
• Increased confidence in the delivery and commissioning of services for people with learning disabilities and autistic people.
• Awareness of the legislative and legal frameworks that underpin practice for those working with people with a learning disability and autistic people.

Delivering services

Services and professionals within health and care have an important part to play in addressing the inequalities in care and high levels of unmet health needs experienced by people with learning disabilities and autistic people.

The co-production work highlighted the importance in ensuring that any programme of activities offered by different services is meaningful and designed to reduce social isolation and contribute to positive social, physical and mental wellbeing.

Trusted relationships between statutory health care providers, day services, and voluntary and community sector-led groups are vital to address inequalities affecting wider determinants of health, and supporting frontline delivery. These relationships help with sharing resources effectively, facilitate holistic support, tailor services to individual needs and maximise cross-sector collaboration.

Relationships between partnering organisations can be further strengthened by clarifying the expectations of what they hope to achieve from working together by agreeing to a Memorandum of Understanding (MoU). Joint Working Protocols (JWP) can also be developed to clarify working arrangements to help organisations work together to achieve their aims. In some cases, organisations may also need to develop Information Sharing Agreements (ISA) to ensure the safe sharing of sensitive data between organisations to better deliver a service (CQC, 2023).

Strengths-based approaches

Strengths-based (or asset-based) approaches focus on individuals’ strengths (including personal strengths and social and community networks) and not on their deficits. Strengths-based practice is holistic and multidisciplinary, working with the individual to promote their wellbeing. It is outcomes led and not services led.

The Care Act 2014 requires local authorities to specifically “consider the person’s own strengths and capabilities, and what support might be available from their wider support network or within the community” (SCIE, 2024).

Strengths-based ways of working can only be achieved through partnership working and collaboration with a wider range of statutory partners and other organisations. This ensures that there is strong commitment to strengths-based ways of working across the local place, and that people are supported to access a broad range of community-based resources, are not impeded by bureaucracy, or bounced from one person to the next.

Strengths-based models shift the focus from what people with learning disabilities and autistic people cannot do to what they can do with the right support.

The aim should be to involve people, families, and carers in solutions that respond to the individuals’ strengths and needs, recognising that people with disabilities have the potential to progress.

A framework has been set out by LGA to support people with learning disabilities and autistic people to have better lives. The aim of the framework is to help directors of adult social services work with their colleagues and partners to identify how they can improve the way everyone supports people with learning disabilities and autistic people and how they can be assured that the care and support in their area is high quality and strengths-based. 

Person-centred care and support

Starting with the ethos that everyone is unique and has immense potential, our role as professionals is to help people discover their innate skills, find out what they want from their lives, and provide support to help individuals in reaching their life goals.

Practitioners should put time and resources into understanding the person they are supporting, their family circumstances, find out the support needs of their carers, and develop a holistic support plan.

Professionals must actively involve people with a learning disability and autistic people in all decisions that they are affected by involving family members, friends, carers or independent advocates if this is what the person wants. If the person is aged 16 or over and lacks the capacity to make a decision, professionals must follow the Mental Capacity Act 2005.

Listening and empathy skills are crucial to supporting people with learning disabilities and autistic people.

The key principle should be that each person’s needs are looked at on an individual basis and preferences must be taken account of individually.

Blanket policies do not help as they can be restrictive due to the individual differences of people’s medical condition, disability, or age. As advised by NHS England guidance this is particularly important regarding ‘Do Not Attempt Cardiopulmonary Resuscitation’ (DNACPR) orders, which should only ever be made on an individual basis and in consultation with the individual and/or their family.

The LeDeR Annual Report (learning from lives and deaths: People with a learning disability and autistic people) considered the circumstances of 3,648 people with a learning disability and autistic people who died.

They reported that “reviewers identified that for 16.1% of deaths that occurred in 2022 where a DNACPR recommendation was in place and a conversation about DNACPR was held, the person with a learning disability was not engaged in the discussion about DNACPR where they had capacity. Reviewers were unable to report whether a conversation took place for a further 33.1% of cases”.

It found that when care packages met a person’s needs and there is an appropriate use of Deprivation of Liberty Safeguards to deliver care, then there was an associated reduced risk of a premature death.

It found that while there is progress, “things may not be improving fast enough, and overall care and outcomes for people with Learning Disabilities all too often still fall below acceptable standards compared to the general population”.

Trauma-informed care

“Trauma-informed practice is an approach to health and care interventions which is grounded in the understanding that trauma exposure can impact an individual’s neurological, biological, psychological, and social development. It aims to recognise the signs, symptoms, and widespread impact of trauma, and to prevent re-traumatisation.” (Office for Health Improvement & Disparities, 2022).

Delivering care to people with learning disabilities and autistic people requires sensitivity to the impact of trauma that they may have experienced. Professionals may struggle to translate the principles of a trauma-informed approach into everyday practice.

Professionals at all levels require access to resources, relevant and accessible training in trauma-informed practice and support to ensure a trauma-informed service delivery.

Hospital passport

A hospital passport helps people with learning disabilities and other lifelong disabilities, and autistic people, give hospital staff important information about their preferences for support and communication, and their health when they go to hospital.

People with learning disabilities and autistic people, and their families, have shared that a hospital passport has significantly improved communication between patients and hospital professionals and are regarded as accessible to use. This also helps with achieving the right level of care and keeping people with learning disabilities safe.

A hospital passport is a document about the person and their health and support needs. It also has other useful information, such as the persons interests, likes, dislikes, how the person may communicate and any reasonable adjustments they might need. If a person is being referred to a hospital by their doctor, the hospital may have specialist learning disability nurses who are available to support the person and ensure they receive good care.

The nurse can meet with the person and their carer before or when they go to hospital to find out as much as possible to understand the help they may need while in hospital. It might be useful for professionals to ask people with learning disabilities if they hold a hospital passport and if they can share the document with people involved in their care with appropriate permissions (NHS, 2022).

Support for carers and family members

As stated in the Care Act, carers and family members should be active partners in care and support processes, of which assessment is one (the others being support planning and review). This is because carers and family members are seen under the Act as best placed to judge and make decisions about their own wellbeing.

The involvement of the carer in any assessment about people with a learning disability and autistic people is therefore of paramount importance under the Care Act. The local authority should ensure their involvement is maximised and that carers remain central to the process and any decisions made about, or will affect, the person they care for. As well as the wellbeing of people with learning disabilities and autistic people, the wellbeing of carers is equally important and should be considered holistically when planning support (SCIE, 2022).

Co-production

The Care Act’s statutory guidance defines Co-Production as “…when an individual influences the support and services received, or when groups of people get together to influence the way that services are designed, commissioned and delivered” (Gov UK, 2024).

However, co-production also promotes an equal partnership between people who draw on care and professionals (SCIE, 2022).

The benefits include:

• The use of people’s experience and expertise, which can contribute to a more efficient use of resources.
• An increased sense of social responsibility and citizenship and benefits to the wider community, particularly to improved health and wellbeing.

Professionals collaborating with communities and people who draw on care and support are likely to have a stronger focus on the outcomes of the support provided when they are co-producing, and potentially a greater focus on prevention. So, there are improved outcomes for people who draw on care and support as a result.

The contribution that co-production makes to developing social networks and communities is another benefit. It has been argued that this only happens where there is collective co-production with groups and communities and not where co-production is confined to individuals being involved in the services they receive (SCIE, 2022).

For further information and examples on good practice examples including case studies and scenarios of co-production in social care and beyond please see the SCIE website.

The SCIE project ‘Tackling inequalities in care for people with learning disabilities and autistic people’ involved working with a co-production group, the ‘SCIE Fliers’, reflecting on their COVID-19 pandemic experiences.

They generated a set of critical lessons and suggestions for improvements at systemic and practice level. Such as:

• Look at different ways of hearing directly from the people you work with, so that you can provide the kinds of services that will carry out their views and wishes.
• As we move towards more ‘hybrid working’, using a mixture of communication methods try to find a good balance between meeting with people face-to-face (which they usually prefer) as well as making contact by phone and online.
• Involve people directly in making decisions about their care, benefits and rights.
• Recognise the roles of an individual’s informal carers and advocates, especially regarding capacity issues.

Further information can be found on the SCIE website: Am I Invisible? Using co-production to advocate change in social care.

As part of sharing this co-production work a SCIE workshop event focused on sharing the themes and findings from this work.

One of the key learnings from the SCIE workshop has been the need to focus on both co-production and groups that are already on the radar, along with finding new ones. Individuals also found that the feedback loop approach ‘you said, we did’ worked well. This meant that people felt listened to and their voices mattered and that they could influence change.

Professionals should work in partnership with, and communicate, in ways and means that are accessible and in safe places taking a joined-up approach, from charity groups to GP surgeries to hospitals, from libraries to bus stops, using videos and posters.

Emergent themes from the co-production group and wider stakeholders

Through the co-production work there was a list of prevalent themes. They include:

• morbidity
• access to services
• diagnosis
• training
• health problems
• health promotion
• health checks
• services for people with learning disability from black and minority ethnic populations.

Inequalities are found in all of these areas, and the reasons and causes can be complex and multifaceted. However consistent areas included:

• limited resources
• professional prejudice
• inadequate responses to characteristics shown by people with learning disabilities and autistic people.

While existing services may work for some individuals, we know they are not always accessible or appropriate for other individuals. This guidance highlights a summary of the measures needed to address this.

Training and development

As part of the tackling inequalities project SCIE co-produced a film with people with learning disabilities and autistic people. A group of experienced London-based self-advocates met to discuss their own stories from the COVID-19 pandemic. The group felt that staff need further training from people with learning disabilities and autistic people, so that they do their jobs better for all, especially older and disabled people (SCIE, 2023).

As highlighted in the film professionals should consider:

• Changing needs (including health), wishes and capabilities.
• Encouraging and supporting independence.
• Activities and any practical support needed to access services, including transport.
• How people could build and maintain support networks.
• Information and support needs of family members (including siblings) and carers.
• Carer’s assessments.
• Creating a future plan.

Commissioning checklist

Feedback from people with lived experience, commissioners and providers is crucial to drawing up the service delivery specification.

The total expenditure of adult social care in England increased by £2.7 billion in real terms from 2010/11 to 2022/23 (The Kings Fund, 2024). There was also a significant shift from spending on nursing and residential care settings to supported accommodation and community-based services.

With the change in commissioning emphasis and increase of real expenditure, commissioning and procurement processes should consider:

• legal duty
• baseline data
• quality and integration
• unmet needs
• personalisation
• community assets and community first
• outcomes
• cost of living
• workforce retention, training and development
• levelling-up community care.