Date published: 9 May, 2023
Date last updated: 12 October, 2023
Learning disabilities and autism

Joint guiding principles for integrated care systems – learning disability and autism

The Local Government Association and the Association of Directors of Adult Social Services, who work together as Partners in Care and Health, have been working alongside NHS England to develop a set of guiding principles for integrated care systems, setting out how partners in local systems can work together to improve the lives and outcomes of people with a learning disability and autistic people, of all ages. It is intended that these principles encourage a partnership approach, across health, local government, and wider partners, within local systems.

Context

The establishment of integrated care systems (ICS) on a statutory basis provides an exciting opportunity for greater collaboration between local health and care partners to improve the outcomes for adults, children and young people who have a learning disability, or who are autistic.

This remains vital work for all of us because people with a learning disability and autistic people often face poor health outcomes. Six out of 10 people with a learning disability die before they are 65, and on average die 20 years younger than the rest of the population. Autistic people also often face significant healthcare disparities – for example, more than 5 in 10 autistic adults have had depression, and autistic adults (without an intellectual disability) are more than 9 times more likely to consider suicide than the general population.

Representatives from NHS England, the Local Government Association and the Association of the Directors of Adult Social Services have been working together to develop a set of guiding principles for NHS and local authority partners in integrated care systems. These principles set out how we would expect partners at a local level to work together, with people with a learning disability and autistic people, to improve the lives and outcomes of our citizens.

This document, whilst looking at all ages has some specific focus on adults. For more detailed guidance in relation to joint planning and commissioning for children and young people please refer to Developing support and service for children and young people with a learning disability, autism or both (2017).

This document should be read alongside the following three key policies:

  1. Building the right support (2015)
  2. Service model for commissioners of health and social care services ‘Supporting people with a learning disability and/or autism who display behaviour that challenges including those with a mental health condition’. (2015)
  3. Developing support and services for children and young people with a learning disability, autism or both (2017)

Our values

This set of guiding principles is based on a set of values that we would expect to see in place as a minimum in every integrated care system, across all health and social care partners:

  • Equality and inclusion – supporting children, young people and adults to live healthy lives in their communities, to be valued as citizens and to be treated with dignity and respect.
  • Having the same opportunities as other citizens – being involved in community life, family and friends, education, social and leisure opportunities, good housing, banking, paid jobs, good health and transport.
  • Person-centred planning and support – children, young people, adults, families and carers are at the centre, listened to, and involved in solutions and actions that respond to the individual strengths, needs and aspirations of each person.
  • Early intervention and prevention – providing effective and early care and support to improve people’s outcomes and make the most of our shared resources.
  • Safety and wellbeing – every child, young person and adult will feel safe in their community and when receiving support and/or care. They should not have to worry about discrimination, hate crime, abuse or harm. Everyone will be aware of their rights and know how to report a risk or concern.
  • Progression – ensuring that all children, young people and adults have the right support, and have the potential to progress and develop in their lives.

Guiding principles

The guiding principles we would jointly expect to see delivered within each integrated care system, led by NHS and local authority partners, are set out below. 

It is important that co-production with people with lived experience, including family carers, is at the centre of all our work from beginning to end for children, young people and adults who have a learning disability or who are autistic. We see the best outcomes for people and their families when they, and their friends/supporters, contribute as equal partners. We recognise that there are different levels of participation and involvement. NHS and local authority partners could consider using a ladder of participation approach like this example from Think Local Act Personal to assess the most appropriate level of involvement in their work with people who have a learning disability and autistic people. 

Reducing health inequalities

The Health and Care Act 2022 established integrated care boards (ICBs) and requires them, with partner local authorities, to form a joint committee: the integrated care partnership (ICP). ICPs at a minimum include one representative from the ICB and one from each partner local authority. ICPs are required to produce an integrated care strategy which must set out how the assessed needs (identified in joint strategic needs assessments) of the ICB and the ICP’s area are to be met by the exercise of functions by the ICB, partner local authorities and NHS England.

Integrated care partnerships should consider how their integrated care strategy will address unwarranted variation in population health and disparities health and wellbeing outcomes, access, and experience. ICPs when considering how they can address health and social care needs, should consider whether population health management approaches could support people in staying healthy, avoiding illness, and the impact this can have on their and their families’ lives.

To support their approach to reducing health inequalities, NHS and local authority partners should consider how they can address the following with respect to people with a learning disability and autistic people: 

  1. A focus on early intervention and prevention, which recognises the impact of intersectionality, including how people will be supported to access structured medication reviews, screening, immunisation and vaccination programmes.
  2. A proactive approach to anticipating the health needs that may be associated with different life stages, for example, childhood, puberty, adolescence, adulthood, pregnancy and the perinatal period, the menopause, older age.
  3. How all partners will support the delivery of learning disability annual health checks and health action plans and, in particular, enabling improved access for people from an ethnic minority background and other vulnerable groups including refugees and gypsy, roma and traveller communities.
  4. Detail of how partners in each integrated care system (ICS) will check or make sure that the reasonable adjustment needs of people with a learning disability and autistic people are being identified, shared and anticipated, and every best effort is made to meet those needs in the planning of services and everyday service delivery. This will ensure that individuals’ fundamental needs are met by all health and social care providers within the ICS.
  5. A proactive approach to monitoring and supporting the physical and mental health and wellbeing of children, young people and adults whilst they are in a hospital setting, including the requirement for a physical health check on at least an annual basis.
  6. How partners will learn from and deliver change as a result of LeDeR (learning from the lives and deaths of people with a learning disability and autistic people) local reviews and actively contribute to the delivery of high quality LeDeR reviews. Consideration should also be given to how partners can develop and implement a plan of action to tackle the causes of preventable deaths in line with their annual report.  

Joint commissioning for people with a learning disability and autistic people

It is suggested that NHS and local authority partners within every ICS consider how they meet the needs of people with a learning disability and autistic people through their commissioning arrangements and commissioned services – this could be articulated in integrated care strategies and joint forward plans. When commissioning services the following should be considered: 

Person centred

  1. The principles of upholding people’s human rights and allowing for personalisation, choice and flexibility.
  2. Engagement with a wide range of stakeholders, with people with lived experience, families and carers being at the centre – including user led organisations like local parent carer forums.
  3. The importance of co-production with both experts by experience and professionals, including families and carers. 

Inclusive 

  1. Focus on each life stage – from early years, primary, secondary school age and transitioning through to adulthood – remembering the long-term ambition of giving every child the best start in life and into adulthood and older adulthood.
  2. Focus on the needs of young people preparing for adulthood. This would ensure that young people, adults and families receive the right support at the right time, using strengths-based approaches, and supporting preparation for transition to adulthood.
  3. Actively involving all partners within the ICP, including voluntary and community sector providers.
  4. Supporting people according to their identified needs, rather than a sole reliance on a formal diagnosis of learning disability or autism.

Evidence-based 

  1. A good understanding of the population through taking a population-based health management approach. Rather than only focussing on the people who have been identified as having the highest level of need, it is important to consider the whole population of children, young people and adults who have a learning disability, and autistic people, and recognise that the needs of people span beyond support that can be offered through the NHS or through social care.
  2. Recognition that people with a learning disability and autistic people can face multiple types of discrimination and can have other needs and protected characteristics that may not always be obvious, leading to poorer outcomes across all life stages. 
  3. Using intelligence from the joint strategic needs assessment. 
  4. Using information from the local dynamic support register. 

Take a whole pathway of care approach – consider:

  1. A joint housing plan, based on an assessment of current and future anticipated housing and accommodation needs, and an appropriate model of care. This should be developed in partnership with local authority social care and council housing departments, including planning and strategic housing leads, with the active contribution of NHS commissioners and other ICS system leaders.  
  2. Population trends in the local community and anticipated needs of those that are children and young people now as they grow and want to move into their own homes, and the needs of people who are ageing with a learning disability and who are autistic. 
  3. The increased inequality presented by intersectionality within local communities and the hidden need that this presents, in planning delivery within a whole care pathway approach.
  4. How ICS partners will influence and ensure that wider health and social care services understand how to consider and make reasonable adjustments and ensure equity of access for people with a learning disability and autistic people.
  5. A whole pathway approach, considering the needs of all children, young people and adults with a learning disability, and autistic people, including the needs of people that are living well within the community, and those people who require the specialised inpatient care delivered through NHS England or NHS mental health learning disability and autism provider collaboratives. 
  6. Recognise that if people require specialist support, including inpatient care, it should be of the highest quality, for the shortest length of time in line with assessed need, and provided close to their home and local community. The exception may be some very specialised inpatient services that will be commissioned on a footprint that is larger than the ICS boundary, for example, secure services.   
  7. For people who need to access services which are ordinarily available in each ICS, we would expect the decision to provide care or treatment away from home to be considered on a case-by-case basis and in partnership with people who use such services, and their family carers. 
  8. Take into account a range of commissioning options, including highly personalised approaches such as personal budgets. 
  9. Ensure that processes that are designed to support local areas (health, local authorities and voluntary sector) to identify their population that may need additional support are robust and work together to enable earlier identification and support to prevent crisis. This particularly includes effective development and use of the local dynamic support register and Care (Education) and Treatment Reviews. 

Planning for and providing care and support for people in the community

It is important to work with people, families and carers to best understand what they need from their local support and services in the community. All partners acknowledge and value the skill and expertise that people with lived experience and their families and carers can bring, both individually and collectively, in informing plans to support individuals to live an ordinary life. The approach that NHS and local authority partners in each ICS could take is as follows: 

  1. Many children and young people will live at home with their families and most adults will be able to live their lives independently, with little or no support from the NHS or from local authorities. However, where it is identified that a child, young person or adult needs additional care and support, it is important that they have a multi-agency assessment under the relevant frameworks (Children Act 1989, Children and Families Act 2014, Care Act 2014) and, as part of this, an individual and personalised plan that assesses what care and support they need, and how that will be provided. Good, personalised care plans include details of where that person will live (and how any needs relating to housing will be met), as well as how any health, care and support needs will be met, including detail of any environmental and sensory considerations. Good plans are also developed with the person and their family/carer and support staff, and have a clear set of actions, dates for when those actions will be delivered, and details on who will deliver each action. They will also consider options for personalised funding arrangements, such as personal health budgets.
  2. The principle of early intervention is key when planning for care and support on both an individual and population basis: planning and investment must be confirmed as early as possible to make the most of collective resources and secure the best possible outcome for individuals.
  3. It is good practice for partners in each ICS to have a joint approach to market shaping and development, including development of community support, at an ICS footprint level that can respond to specific circumstances at a more local level. The aim of the joint approach would be to ensure sufficiency of community health support, social care provision, housing supply and workforce capacity and capability across the system population.   
  4. We see good outcomes for individuals and families when community teams and professionals for people with a learning disability and autistic people are jointly commissioned, and jointly provided, across health and social care wherever possible, to provide a seamless approach. This includes the use of joint assessments and paperwork/digital alternative.
  5. It is important to ensure that all partners within the ICP, for instance criminal justice, including police and probation, and providers of emergency services, are involved in all planning and discussions around how to deliver services for people with a learning disability and autistic people.
  6. Good, personalised individual plans should be based on intelligence from dynamic support registers, education and health care plans, and Care (Education) and Treatment Reviews. 

Safeguarding and quality oversight for people who are living in the community and for people in a mental health inpatient setting

  1. Particular focus on and oversight of the quality of care delivered to any child, young person or adult who is supported in a community setting (including residential special schools) or in inpatient provision and considered particularly vulnerable, by those who are commissioning the care. Examples of this include people who are away from their family and local community, and those who are subject to restrictive interventions.
  2. A joint approach between NHS and local authority partners to assessing the appropriateness and associated risks of any potential ‘placements’ that are at a distance from people’s home, families and local communities. If it is agreed that a person will be in a hospital or in community provision outside of their local area, or there is no viable alternative closer to home, it is important that local partners consider whether there is appropriate co-ordination and oversight in place. They should also consider whether the person has been offered support from an independent advocate, and how they are being supported to maintain links with their family and social environment.
  3. Clearly defined and understood opportunities to triangulate intelligence across health, social care, housing, Healthwatch, the Care Quality Commission, Ofsted, and other regulators as appropriate, should quality and safety concerns be identified, with agreement to undertake a co-ordinated approach to responding to these concerns.
  4. Clear routes of escalation into local and regional governance for significant quality and safety concerns, recognising the role of system quality groups, safeguarding adult boards and children’s safeguarding partnership boards. 
  5. Joint arrangements for learning from and acting on recommendations from both national and local reviews carried out into the quality and safety of community or inpatient provision. For example, learning from safeguarding children and adult reviews, or serious incident reviews, making it clear which organisation is accountable for particular recommendations, and reporting on progress.  

Education and children’s social care services

Ensuring children and young people are able to access effective education, and appropriate additional support if required.

It is considered good practice for NHS and local authority partners within each ICS to ensure:

  1. They work closely and in partnership: the integrated care board (ICB) must work in partnership with other operational and strategic leaders in health, education, and social care, parent carer forums, provider collaboratives, local authorities, and voluntary and community sector enterprise (VCSE) organisations. This will drive quality improvement and outcomes for children and young people with special educational needs and disabilities (SEND) and their families and ensure there is a good understanding of local offers and support.
  2. They have strong transition planning arrangements: for many children with a learning disability and autistic children who find themselves living away from home, their pathway usually begins with them being unable to access education and/or being out of education through either school refusal or exclusion. Increased numbers of young people aged 18 to 25 being admitted to mental health hospitals suggests transition planning may not always be effective or comprehensive.
  3. Young people receive the right support, with services working together across the ICS (including across health providers and local authorities) to prevent children having to live at distance away from home, whether in social care or health settings. 
  4. Oversight and system quality processes are in place: ensuring that the existing oversight and system quality processes support effective delivery of the ICB’s SEND statutory duties according to part 3 of the Children and Families Act 2014, including education health and care plan timelines, and quality and annual reviews. The following may be helpful to use for raising concerns and improving quality: NHS oversight framework 2022/23 and national guidance on system quality groups.
  5. They meet the health requirements of the area SEND inspections: ICB leaders and providers will now be inspected by Ofsted and the Care Quality Commission at a local area footprint under the SEND inspection framework and handbook.

Employment

It is important to consider creating and promoting opportunities to employ people with a learning disability and autistic people, both directly within the partner organisations of the ICS, but also within the organisations and teams that plan and deliver services with the ICS.

This could include partnership working to develop local apprenticeships or promoting opportunities through the voluntary and community sector. It would be good practice for employers to ensure their employment practices are inclusive and accessible to people who are autistic and people with a learning disability.    

Workforce

In line with the NHS Long Term Workforce Plan, every ICB should set out its priorities for workforce action in its local joint forward plan. In respect of learning disability and autism, we would suggest that this:

  1. Shows an understanding of the current workforce across the whole pathway through gathering and using workforce intelligence and the views of people in receipt of care, alongside future demand aligned to population needs, to better plan their workforce needs for the future.
  2. Sets out how the ICS partners will enable the recruitment, retention, support and development of the right people, with the right values, behaviours, skills, capacity and capability to deliver high-quality care and support for children, young people and adults who have a learning disability, and autistic people. This may be through the commissioning of integrated health and social care multidisciplinary teams, or through the promotion of joint apprenticeship opportunities, for example. 
  3. Sets out opportunities for training that is jointly developed and delivered, both for staff who directly support children, young people and adults who are autistic or with a learning disability, and for the wider health and social care workforce. This will ensure that their services, approaches and interventions are accessible for people with a learning disability and autistic people. It is good practice for training plans to be inclusive of agency/bank and independent sector provider workforce. Please see the further resources [link] section for useful links relating to workforce skills and training.
  4. Reflects the broad ranges and personalised needs of children, young people and adults who have a learning disability, and autistic people, ranging from low level support to highly specialist, and considers a range of different models of support and types of support role. 

Finance

A strong commissioning strategy would set out an integrated approach to how funding will be made available to support flexible approaches to commissioning. It is considered good practice for NHS and local authority partners within each ICS to have: 

  1. A joint finance plan that sets out all available sources of funding, and how they will be used collectively within the ICS (and beyond the ICS, as appropriate), to support delivery of the agreed commissioning strategy, which would ideally include housing and workforce.
  2. An expectation that when any additional funding is received (for instance, national NHS Learning Disability and Autism Programme funding) there is full transparency regarding the availability of this funding, and a mechanism for determining, in partnership with people with lived experience, voluntary sector partners, providers and commissioners, how this should be used to support people with a learning disability and autistic people. This should be in line with the assessed need set out within the locally agreed commissioning strategy.
  3. Agreed financial approaches that allow as appropriate:
    • micro-commissioning (identifying, addressing and funding needs at an individual level)
    • personalised and flexible approaches (for instance, the use of personal health budgets)
    • commissioning support at the point of crisis to avoid admissions to mental health inpatient care
    • the additional costs associated with transition periods, for example, when both home and hospital care is required to support discharge.  

Governance

It is important that there is robust integrated local governance (representing both health and local government, and including people with lived experience, and community, inpatient and housing providers) responsible for overseeing the delivery of the Building the right support action plan and the NHS Long Term Plan commitments relating to people with a learning disability and autistic people. 

Each ICB must have a board-level executive lead for learning disability and autism, down syndrome, LeDeR, mental health, children and young people and SEND. These may be the same individual but if not, these executive leads should work closely together to support appropriate governance.

NHS and local authority partners in each ICS should consider putting governance arrangements in place that: 

  1. Have a mechanism for place-based systems to have a relationship that allows information to flow between the integrated care board, and respective regional teams, on matters relating to learning disability and autism. It would also be good practice for governance arrangements to make clear how there will be opportunities to involve local people with a learning disability and autistic people. It will be for systems to determine how the role of any existing transforming care partnerships transitions into the new governance arrangements.
  2. Have a means to ensure that the needs of people with a learning disability and autistic people are represented across all neighbourhood, place and ICS plans, including those outside the health service.  
  3. Are reflective of new legislation which will impact people with a learning disability, autistic people, and their families and carers, for example, the Down Syndrome Act, Liberty Protection Safeguards, Mental Health Act Reform, and the Mental Capacity Act.  

Further resources to support implementation of the guiding principles

Plans and strategies

Community support and resources

Relevant legislation  

Useful Data sources 

Publication reference: PRN00110

Date published: 9 May, 2023
Date last updated: 12 October, 2023