Learning disabilities and behaviour that challenges: service design and delivery

Local authorities and clinical commissioning groups should jointly designate a lead commissioner to oversee strategic commissioning of health, social care and education services specifically for all children, young people and adults with a learning disability, including those who display, or are at risk of developing, behaviour that challenges.

Ensure that the lead commissioner:

• plans and oversees joined‑up commissioning arrangements

• has in‑depth knowledge and experience of working with children, young people and adults with a learning disability and behaviour that challenges, including knowledge of local services

• plans services that take a 'whole life' approach from early childhood onwards and enable smooth transitions.

The lead commissioner should ensure that budgets and other resources are pooled to develop local and regional services for children, young people and adults with a learning disability and behaviour that challenges. These should be pooled:

• across health, social care and education and

• with neighbouring authorities.

Consider jointly commissioning the most specialised behaviour support services across areas for children, young people and adults with particularly complex needs.

Ensure that funding mechanisms for service providers support creative and flexible community-based responses, for example, a contingency fund that service providers can draw on quickly if there is a crisis.

Ensure that service planning and delivery is based on an assessment of current and future service needs using:

• the local population prevalence of learning disabilities in children, young people and adults and the proportion who are likely to display behaviour that challenges

• an analysis of assessed needs in education, health and social care plans, to provide an early view of likely service needs and enable prevention and early intervention

• other sources of information, such as registers of people at risk of admission and other dynamic risk data; disabled children's registers; and records of referrals from liaison and diversion teams, youth offending teams and police.

Ensure that services are planned and delivered in a way that:

• is co‑produced with children, young people and adults using services and their families, carers and independent advocates

• enables person-centred planning and provision

• addresses the needs of different age groups but also takes a 'whole life' approach to planning

• includes planning for a range of future housing and employment support needs

• integrates health, social care and other relevant services.

Develop local and regional plans that have a single care pathway and point of access for children, young people and adults with a learning disability and behaviour that challenges, and their families and carers. Make sure this is reflected in local authorities' commissioning strategies and key documents such as the Market Position Statement.

For further information on how to develop care pathways, see the section on organising effective care in NICE's guideline on challenging behaviour and learning disabilities: prevention and interventions.

Take joint responsibility with service providers and other organisations for managing risk when developing and delivering care and support for children, young people and adults with a learning disability and behaviour that challenges. Aim to manage risks and difficulties without resorting to changing placements or putting greater restrictions on the person.

Ensure services meet set service-level and individual outcomes, and that service providers show evidence of achieving these outcomes. This evidence could include:

• satisfaction and quality-of-life ratings of children, young people and adults who have used the service, and their family members, friends and carers

• outcomes measured by personalised and validated tools such as the 'measure of processes of care' (MPOC) tool, or the 'patient feedback questionnaire' (PFQ)

• a reduction in duration and frequency of behaviour that challenges

• stability of placements

• participation in education by children and young people

• reports on the use of restrictive interventions, including medication

• contact time with specialist professionals

• evidence from quality reviews and spot checking involving experts by experience

• quality checks by user-led organisations.

Inpatient services should provide the evidence in recommendation 1.1.10 in addition to evidence of detailed assessments, treatment outcomes and time to discharge.

Commissioners should establish a multi-agency group, or make use of an existing group, including experts by experience and service providers, to monitor the quality of services and the outcomes achieved.

Service providers should use evidence gathered to continuously improve services. They should record the results and make them available to people who use services, and their families and carers.

Commissioners should make use of expertise from experts by experience to inform decision-making and quality assurance of services.

Practitioners working with children, young people and adults with a learning disability and behaviour that challenges, and their family members and carers, should get to know the person they support and find out what they want from their lives, not just what they want from services.

For more information on involving people in their care and support, see the section on working with people with a learning disability and behaviour that challenges, and their families and carers in NICE's guideline on challenging behaviour and learning disabilities: prevention and interventions.

Actively involve people with a learning disability in all decisions that affect them. If a person aged 16 or over lacks the capacity to make a decision, staff must follow the Mental Capacity Act 2005.

Assess whether a child or young person under the age of 16 is Gillick competent and work in partnership with all children and young people. Include them in decisions about their treatment and ask them how they would like their families or carers to be involved.

Involve families, friends, carers or independent advocates if this is what the person wants, or where decisions are made in the best interests of a person aged over 16 in line with the Mental Capacity Act 2005. This should be done unless there is a compelling reason not to (for example, if there are safeguarding concerns).

Support children, young people and adults with a learning disability and behaviour that challenges to live where and how they want. Give them support that:

• is person-centred, reflecting their individual needs and choices, and maximising their control

• helps them take an active part in all aspects of daily life that they choose, based both on what they can do and what they want to do

• takes into account the severity of their learning disability; their developmental stage; any communication difficulties or physical or mental health problems; and their life history

• respects their cultural, religious and sexual identity

• helps them before problems occur or as soon as they emerge, not just when crisis has been reached

• encourages people to speak out if they have any worries

• promotes continuity of relationships.

Find out children, young people and adults' information and communication needs, record them and share this information with everyone working with them in line with NHS England's Accessible Information Standard.

Ensure that people with a learning disability and behaviour that challenges have access to speech and language therapy when they need it.

Consider providing access to independent advocacy whenever it is wanted or needed by a person with a learning disability and behaviour that challenges. As a minimum, it must be offered by local authorities as described in the Care Act 2014, Mental Capacity Act 2005 and Mental Health Act 2007.

Ensure that independent advocates working with children, young people and adults with a learning disability and behaviour that challenges have skills and experience in working with these groups, and in working with specialist learning disability services.

See also recommendations 1.8.3 and 1.8.4 on independent advocacy in relation to inpatient admissions.

Local authorities working in partnership with healthcare professionals should assign a single practitioner, for example, a social worker (in a disabled children's team or community learning disability team) or community psychiatric nurse, to be the person's 'named worker'. The named worker should get to know the person and coordinate support to meet their needs over the long term.

The local authority, clinical commissioning group and service providers should liaise regularly with the named worker, keeping them informed and involved in decision-making.

Arrange regular meetings to discuss the person's care and support, and invite people in their support network, including family members, carers, independent advocates and practitioners from all services that support them. This could build on existing processes, for example, the education, health and care planning and review process for children (see Gov.uk's children with special educational needs and disabilities).

Recognise and use the expertise brought by all members of the person's support network (not only those who are paid).

Community learning disability teams (or relevant children's services, for example, disabled children's teams) and service providers should work in partnership with the child, young person or adult, their family members, carers and independent advocates and their named worker to develop, deliver and review their care and support plan. Develop a care plan that:

• meets the person's needs and preferences

• works to support and maximise the person's mental capacity

• takes into account people's fluctuating mental capacity and needs

• adopts a 'whole life' approach that covers what they want to achieve in both the short and long term, and supports smooth transitions

• takes a positive approach to managing risk

• sets out what to do to prevent or respond to a crisis.

Service providers and agencies responsible for commissioning and planning services (including specialist services) should match the specific skills of staff to the characteristics of the person with a learning disability and behaviour that challenges. Do this as soon as care and support planning begins.

Community learning disability teams or relevant children's services (for example, disabled children's teams) and service providers should review children, young people and adults' care and support with their named worker:

• according to timings agreed in their plan and

• whenever there is a significant change, for example, if the person is placed out of area.

When reviewing plans:

• involve people as set out in recommendations 1.2.1 to 1.2.4

• take account of people's fluctuating mental capacity

• check that staff are following the behaviour support plan recommendations in NICE's guideline on challenging behaviour and learning disabilities: prevention and interventions

• think about plans for the future, including whether changes might be needed to the person's housing or support.

As soon as a child, young person or adult develops behaviour that challenges, community learning disability teams (or relevant children's services, for example, child and adolescent mental health learning disability teams) and service providers should offer to work with them and their family or carers to develop a behaviour support plan.

For more information on what this should include, see the recommendations on behaviour support plan in NICE's guideline on challenging behaviour and learning disabilities: prevention and interventions.

Ensure that a range of funding arrangements are available, including direct payments, personal budgets or individual service funds, depending on children, young people and adults' needs and preferences.

Offer people a choice of funding arrangements (see recommendation 1.2.19) and support people to use these budgets, where they wish to, by:

• telling them how each element of their support will be funded

• telling them how much money is available and how much control they have over how the money is spent

• giving them and their families and carers information about different ways of managing their budgets, and how these may affect their carer

• supporting them to try out different mechanisms for managing their budget

• offering information, advice and support to people who pay for or arrange their own care and support, as well as to those whose care and support is publicly funded

• offering information about benefits entitlement

• ensuring that carers' needs are taken fully into account.
  
  [This recommendation is adapted from NICE's guideline on older people with social care needs and multiple long-term conditions.]

In all settings, staff working with children, young people and adults with a learning disability, and their families and carers, should aim to reduce the risk of behaviour that challenges developing by:

• identifying health or sensory problems early

• providing strategies and interventions to support communication.
  
  Follow recommendations on psychological and environmental interventions in NICE's guideline on challenging behaviour and learning disabilities: prevention and interventions.

For people taking medicines:

• follow recommendations in NICE's guideline on managing medicines for adults receiving social care in the community and

• if the reason for the medicine relates to the person's behaviour or mental health, ensure it is reviewed regularly in line with recommendations on medication in NICE's guideline on challenging behaviour and learning disabilities: prevention and interventions, and recommendations in mental health problems in people with learning disabilities: prevention, assessment and management.

Ensure that children, young people and adults with a learning disability and behaviour that challenges know about and are able to use services to support their health and wellbeing. These should include:

• services helping people to make and maintain friends, relationships and social networks in their community and take part in community activities

• access to employment and pre-employment opportunities

• day opportunities where activities can be tailored to the person's interests, preferences, strengths and abilities

• universal healthcare services and health checks

• peer support opportunities.

The lead commissioner should commission services in the community for people with a learning disability and behaviour that challenges (including for people in contact with, or at risk of contact with, the criminal justice system). These services:

• should be able to cater for lower-level needs up to intensive, complex or fluctuating needs

• could be set up either as 1 large team with different subteams or as several separate teams

• should be provided wherever possible as an alternative to, and to reduce the potential need for:

  • inpatient care for children, young people and adults or

  • residential placements for children and young people.

Services in the community should fulfil the following core functions:

• specialist prevention and early intervention

• developing capacity in non-specialist community services to prevent unnecessary inpatient admissions

• giving support and training to families and carers (by following the recommendations on support and interventions for family members or carers in NICE's guideline on challenging behaviour and learning disabilities: prevention and interventions)

• quality assurance and service development

• short-term assessment and intervention

• longer-term complex intervention

• crisis response and intervention.

Ensure that children, young people and adults with a learning disability can get specialist support through their community learning disability team that meets their needs, for example, in relation to:

• behaviour

• communication

• social care and support needs

• physical health

• mental health

• education

• offending behaviour.
  
  This could be achieved by employing relevant practitioners within the community learning disability team or by developing close links with practitioners in other relevant services.

Services who provide support through the community learning disability team should work together and provide consultancy and support to each other. They should work with children, young people and adults, and their family members and carers, in a way that is:

• personalised

• flexible

• responsive

• accessible

• reflective.

If a child, young person or adult develops, or is at risk of developing, offending behaviour, community learning disability teams should refer them to appropriate specialists, such as community forensic or youth justice services, as soon as possible (see recommendations 1.4.12 to 1.4.16). These services should:

• provide evidence-based early interventions that are adapted for people with a learning disability and address the specific behaviour

• work in an ongoing partnership with each other and with the community learning disability team whenever needed.

Community learning disability teams should maintain good communication and links with the police and liaison and diversion teams so that:

• they can advise on assessments of vulnerability, particularly for people with mild or borderline learning disabilities who may otherwise not be identified as vulnerable

• people who need support can be diverted from the criminal justice service to community learning disability teams.

Ensure that specialist assessment and behavioural support are available in the community so that children, young people and adults can stay where they currently live and avoid moving.

Ensure that specialist services for behaviour that challenges are available to everyone with a learning disability and behaviour that challenges, based on an assessment of each person's need and risk and taking into account the benefit of early intervention.

The lead commissioner should:

• set local maximum waiting times for initial assessment, and for urgent and routine access to treatment and support

• ensure that waiting times for specialist behavioural support do not exceed NHS waiting time standards.

Provide a local, personalised response to children, young people and adults who need intensive support during a crisis. This response should:

• focus on keeping people in their own home

• have an out-of-hours helpline as a first option with the capacity to respond rapidly (within 1 hour or in line with local mental health crisis response times), staffed by people with skills and knowledge in learning disabilities and behaviour that challenges, and specialist skills in mental health problems

• provide face-to-face support within 4 hours if needed, based on initial triage

• involve partnership with other commissioners, service providers and family members and carers

• include giving staff access to the person's information if they are already in contact with services

• provide short-term support to achieve aims that are agreed with the person

• include clear contact details for children's services (as set out in the Local Offer) and adults' services.

Use a clear, coordinated approach to reducing the level of support from more intensive services in line with the person's needs. Learn from what happened and use this knowledge to inform future early intervention and prevention services and support crisis plans.

Commission local community forensic services for children, young people and adults with a learning disability and behaviour that challenges who are in contact with, or at risk of contact with, the criminal justice system to prevent out-of-area hospital placement. These could be provided as stand-alone teams, or as a specialism within an existing team, for example, a community learning disability team, or a learning disability specialism within a community forensic team.

When forensic community learning disability services are supporting children, young people and adults with a learning disability (for example, if they are subject to a forensic community rehabilitation order or a community treatment order), they should enable them to live in the community, as close to home as possible, and in the least restrictive setting.

Forensic community learning disability services should stay in frequent contact with the person they are supporting, including those who are in out-of-area placements or criminal justice settings, and help them build and maintain social links in their community.

Forensic learning disability services and probation services should work together to agree who is best able to support the person in meeting the requirements of their treatment or rehabilitation order.

Forensic learning disability services, mental health, specialist voluntary sector organisations, learning disability services and social care services should establish care pathways and close links with each other to help them refer people quickly between these services to get the right support and effectively manage risk.

Commissioners should work with local housing and social care providers to identify the specific housing needs of adults with a learning disability and behaviour that challenges. They should ensure areas have a range of housing and care options available that meet these needs and cater for different preferences and person-centred support needs (see also section 1.2).

Enable adults to live close to their family, friends and community unless they choose not to or there is a compelling reason not to.

Where possible ensure that, wherever people live, they have security of tenure in line with the Real Tenancy Test.

When helping adults with a learning disability and behaviour that challenges choose where to live:

• provide information on the range of possible options

• take into account their preferences and any specific support needs or risks, including the impact of environmental factors on the person (see the recommendation on environmental factors in NICE's guideline on challenging behaviour and learning disabilities: prevention and interventions)

• give them advice on adapting their current home if needed.

Offer people the option to live alone with appropriate support if they prefer this and it is suitable for them.

If adults prefer not to live alone with support, or it is not suitable for them, offer them the option of living with a small number of other people in shared housing that has a small-scale domestic feel. Involve people in choosing how many people, and who, they live with.

Offer adults housing outside their local community only:

• if it is what the person wants

• if it is indicated after a full assessment and planning process, which takes into account the person's preferences, needs and risks

• for a specified time that has been agreed with the person, or agreed in their best interests if they lack capacity to decide this – for example, if they are in crisis and there is no local placement available.

If someone is moving outside their local area, local authorities, clinical commissioning groups and commissioners should:

• establish the commissioner who is responsible for paying for the person's care and support

• ensure they will still have the support they need

• make a plan that enables them to return to their local area if they want to, or if it is in their best interests if they lack capacity to decide this.

Support parents and carers to understand the full range of options for education, care and support for their child.

When considering a residential placement, arrange a multi-agency review to explore all options and to review the child or young person's education, health and care plan. Include in this discussion:

• the child or young person, and their parents or carers

• the lead commissioner on behalf of the local authority and clinical commissioning group

• at least 1 practitioner with clinical expertise in learning disability and the specific behaviour that is challenging

• an independent expert by experience

• special educational needs staff, or staff from their school or college.

Only offer children and young people a residential placement:

• if assessment and care planning show that their needs (including their educational needs) cannot be met while they are living at home, and all alternatives to residential care have been considered and exhausted, or

• following a request by the child or young person's family, which has been considered under the Children and Families Act 2014.

Commission residential placements for children and young people as close to home as possible. Take into account in local authority contracts that some families may need financial support to help them see their child and for their child to visit them.

Support children and young people to maintain links with their family, friends and community (for example, members of their religious community) while they are in a residential placement.

Local authorities and service providers must promote maximum contact between children and young people living in residential placements and their family members and carers (in line with schedule 2 of the Children Act 1989). If a placement lasts longer than 3 months, the government's Visiting Regulations 2011 must be followed, for both local and out-of-area placements (see The Visits to Children in Long-Term Residential Care Regulations 2011). Help families stay in touch between visits, for example, using Skype.

As soon as a child or young person moves into a residential placement, local authorities and clinical commissioning groups should ensure that:

• a plan is developed for how they will progress towards returning to their family home, if appropriate, and towards greater independence

• they continue to be supported to meet the outcomes identified in their education, health and care plan.

Review the plan in recommendation 1.6.12 at least every 6 months to check that progress is being made. This could be done as part of a looked-after child review, an education, health and care plan review, or sooner if needed.

Plans should be reviewed by the practitioner responsible for overseeing the child or young person's education health and care plan and all other practitioners involved in their care and support, including a specialist in behaviour that challenges.

If progress towards the outcomes in the plan has not been made, explore and address the reasons for this. If the child, young person or their family disagrees with the decision made at the review meeting, explain how they can challenge the decision if they want to.

Admit children, young people and adults with a learning disability and behaviour that challenges to inpatient units only if assessment and care planning show that their needs cannot be met safely in the community, and all possibilities for doing so have been considered and exhausted.

When thinking about inpatient admission, arrange a discussion to explore all other viable options. Include in this discussion:

• the person and their family members and carers

• at least 1 practitioner with clinical expertise in learning disability and the specific behaviour that is challenging

• at least 1 independent expert by experience.
  
  For further guidance, see NHS England's information on community Care and treatment reviews or, for children and young people, community Care, education and treatment reviews.

When there is a possibility that someone will be admitted to hospital, including as an informal admission, local authorities and clinical commissioning groups should give them and their family and carers accessible, independent information and advice about their rights, access to independent advocacy and other possible options for treatment, and care and support.

Service providers must provide information about independent mental health advocacy as required by the Mental Health Act 1983.

Provide an inpatient placement that is as close as possible to where the person usually lives.

The named worker should support the person to maintain links with their family, friends and community (for example, members of their religious community) while they are in hospital, and give their family and friends information about their progress.

If people are admitted as inpatients outside their local area, social workers in the community learning disability team and the named worker should stay in contact with the person, and help them stay in contact with other key practitioners in their own area.

When someone is admitted as an inpatient, offer them interventions in line with recommended psychological and environmental interventions in NICE's guideline on challenging behaviour and learning disabilities: prevention and interventions. Ensure that these interventions specifically address their needs and the reason for their admission.

As soon as the person is admitted, the hospital and community learning disability team should work together to develop a discharge plan.

Practitioners involved in the child, young person or adult's care and support should review the person's discharge plan at least every 3 months. Include in these reviews:

• the person and their family members or carers

• the practitioner responsible for agreeing discharge

• a specialist in behaviour that challenges.

Think about using NHS England's Care and treatment review process or the Care programme approach as a framework for reviews to support discharge for adults. For children and young people think about using the Care, education and treatment review or education, health and care planning process.

If the person is not discharged after the meeting with practitioners involved in their care and support, provide sufficient reason for this and develop a new plan towards discharge. Explain to the person and their family or carers how they can challenge the decision if they want to.

Tell people who might apply to, or are referred for, a first-tier mental health tribunal relating to being an inpatient, about their right to request an independent clinician (in line with section 76 of the Mental Health Act 1983) to:

• visit them at any reasonable time and examine them in private

• inspect any records relating to their conditions and treatment.