Commissioning and providing support for people with a learning disability and behaviour that challenges Jonathan Senker, Guideline Committee Chair; Chief Executive, VoiceAbility Dr Karin Fuchs, Guideline Committee Member; Consultant Clinical Psychologist, Sussex Partnership NHS Trust

https://www.nice.org.uk/guidance/ng93

What’s NICE? Improve outcomes for people using the health and social care services. Produce evidence-based guidance and advice  Develop quality standards and performance metrics Provide a range of information services Guidance for social care since 2013 Commissioned SCIE to lead a collaboration to provide social care guidance.

What we will cover How the guideline was developed People with learning disabilities and behaviour that challenges Scope of the guidance Critical issues Commissioning Supporting families Services in the community Housing Specifically for children and young people Inpatient services Early support and intervention (cross cutting theme) Conclusions.

How the guideline was developed Guideline Committee (GC) includes People who use services Experts by Experience – including services for people with learning disabilities and behavior that challenges and family members Professionals from clinical, commissioning, provider, local authority, health and education. Experts by Experience were supported by Paradigm by meeting before each committee and bringing ideas to each GC. Extensive review of research evidence Expert witnesses focusing on people who use services’ experience and community journey; commissioners, forensic, specialist community provision.

The need 1.2 million children, young people and adults in England have a learning disability. Estimated that 10-17% of people (120,000 to 195,000 people) have behaviour that challenges (Allen et al, 2007) Over 40,000 children with learning disabilities who display behaviour that challenges (Emerson et al, 2014) In many way the people most in need and most poorly served

Purpose Improve lives of people with learning disabilities whose behaviour challenges and their families Provide advice about what works based on best evidence Help resources be used to best effect Tool to help identify, argue for and develop the right things Guidance to inform, encourage and shape local and individual responses not blue-print.

Aims and principles Children, young people and adults with a learning disability and behaviour that challenges should have the support they need to live where and how they want. shift focus towards prevention and early intervention, enable children, young people and adults to live in their communities increase support for families and carers reduce the need for people to move away from their home or community for care, education or treatment.

Aims and principles Recommendations on how to design and deliver services to: help people to have a good quality of life support people to have good physical and mental health and emotional wellbeing maximise people's choice and control help children, young people and adults take an active part in all aspects of daily life that they choose, respect people's cultural, religious and sexual identity help ensure that support can be offered as early as possible promote continuity of relationships take a 'whole life' approach.

Context Developed in a context of changes to policy and practice for children, young people and adults with a learning disability and behaviour that challenges Perceived slow and locally patchy implementation of transforming care programme Lots of published guidance but a need to identify and link this to research and the evidence- base Recognise real world context including financial pressures.

Evidence based Principle of best available evidence Many thousands of studies reviewed for content and quality Reviewed at beginning and end Where critical gaps in quality published evidence used expert witnesses, committee consensus and modelling.

Complementary guidelines and policy Complements NICE’s prevention and intervention guidance: Challenging behaviour and learning disabilities: prevention and interventions for people with learning disabilities whose behaviour challenges (NICE Guidance NG13 2015), Building the Right Support (2015) The National Service Model - Supporting people with a learning disability and/or autism who display behaviour that challenges, including those with a mental health condition (2015) Transforming Care model service specification: supporting implementation of the service model (2017). Developing support and services for children and young people with a learning disability, autism, or both. (2017) Lenehan Review (2017) And more…..

Achieving change: Commissioning Single lead commissioner with oversight for all people with learning disabilities (1.1.1) Must have in- depth knowledge and experience of children and adults with learning disabilities and behaviour that challenges (1.1.2) Strategic oversight all services specifically for people with learning disabilities (1.1.1) Whole life approach (1.1.2).

Achieving change: Commissioning “Working alongside our well-established Integrated Assessment and Care Management Team and pooling budgets for adult social care and NHS continuing healthcare have been vital to the success of our TCP.” Justin Hackney Lincolnshire County Council (in LGA First Magazine June 2018)

Achieving change: Commissioning Joined up commissioning, across Health and Social Care (1.1.3) Pooled budgets and resources across health, social care and education (1.1.3) Consider jointly commissioning the most specialised behaviour support services across areas (1.1.4)

Personal budgets and funding mechanisms Support people to use personal budgets and ensure a range of funding options available (including Direct Payments and Individual Service Funds) (1.2.19, 1.2.20) Funding mechanisms to support community-based responses e.g. contingency funds for providers to avert/ address crisis (1.1.5).

Planning, quality and outcome Planning ahead and delivering services based on best available local evidence and need (1.1.6) Collaborative and involving in planning (1.1.7, 1.1.14) Risk sharing: commissioner, provider, other agencies (1.1.19) Quality assurance – emphasis on evidence of achieving service level and individual outcomes (1.1.10 - 1.1.13)

Support families Ensure families and carers receive the support they require to care for the person and themselves (1.3.1 – 1.3.3 +) Offer short breaks (1.7.1-3) Enable access to specialist services (1.3.1, 1.3.5) Provide information, guidance and continuing support e.g. peer support, family networks and advocacy (1.3.2) Advise families how to access short breaks, specialist behavioural support, training, emergency support, community resources, complaints and safeguarding processes (1.3.5).

Enabling person-centred care and support Involve people with a learning disability and behaviour that challenges (1.2.1- 1.2.7) Offer advocacy (1.2.8, 1.2.9, 1.8.3, 1.8.4) Coordinate care and support: named worker, regular reviews (1.2.12, 1.2.14, 1.2.16, 1.3.4-1.3.6, 1.6.5, 1.6.7,1.1.12-15+more) Deliver care and support Identify health and sensory problems early (1.2.21) Strategies and interventions to support communication (1.2.7, 1.2.21) NICE recommended psychological and environmental interventions (1.2.21).

Services in the community - prevention, early intervention and response Commission community provision to ensure: Specialist prevention and early intervention (1.4.2) Develop capacity in community to prevent avoidable inpatient admissions (1.4.2) Quality assurance and service development (1.4.2) Short term assessment and intervention (1.4.2) Longer term complex intervention (1.4.2) Crisis response and intervention (1.4.2). Community learning disability teams should provide specialist support in relation to behaviour, communication, social care and support, physical health, mental health, education, offending behaviour (1.4.3).

Enhancing community support Enhanced support for families (section 1.3) Early intervention and support to anticipate and respond to crisis (1.1.5, 1.2.5, 1.2.14, 1.4.2, 1.4.10-11, 1.7.3) Ensuring the timely availability of expert support (1.4.10): specialist assessment and behavioural support Intensive behavioural support during a crisis Helpline, including out of hours Services for people in contact with, or at risk of contact with the criminal justice system (1.4.12-16).

Examples – enhanced community provision Southwark Enhanced Intervention Service – an extra tier to CLDT provision. Working preventatively with local services to increase their capacity to create capable environments through training and consultation Rapid, flexible, intensive MDT multi-element assessments and interventions at point of crisis or potential service/family breakdown to help avoid hospital admission/ placement breakdown/out of area placement Service design, planning and strengthening services for people returning to Southwark; additional clinical expertise to support step-down back from more restrictive environments PBS is a cornerstone approach but systemic approaches also utlised through frequent “network meetings”, with families a key part of the planning and oversight of the work. Ealing intensive therapeutic short breaks service (ITSBS) (Reid, Sholl & Gore, 2014)

Housing options for adults Commissioners work with housing and care providers to ensure range of housing and care options are available (1.5.1) Offer the choice to people to live alone with support where wanted and appropriate (1.5.5) Share with small number of people (1.5.6) Preference for security of tenure - ownership/ real tenancy rights (1.5.3) Enable people to live close to family and friends (1.5.7-8)

Example – West Sussex ESS Enhanced Support service (ESS) embedded within CLDTs. Distinct ring-fenced additional intensive and rapid support for people presenting with the most at risk challenging behaviour ESS (and the CLDTs) are integrated health and social care teams PBS a cornerstone approach, but with additional specialist skills - mental health, autism, trauma and forensic assessments Intensive clinical support to people, families and providers Developed bespoke capable environments for the most complex individuals, working with people, families, care managers, commissioners, and providers.

Specifically for children and young people Support parents and carers to care for their child (s.1.3) Ensure full range of options for education, care and support, including specialist support (1.6.2) Support parents and carers to understand this (s.1.3, 1.6.6) Include specialist behavioural support from education and CAMHS practitioners with specific skills 1.6.3) Provide support and interventions in line with NICE’s guideline on challenging behaviour and learning disabilities: prevention and interventions (1.6.4).

Residential placements for children and young people When considering residential placements arrange a multi-agency review to consider all options with the child, young person and their family or carers (1.6.7) Ensure independent and expert involvement in the review (1.6.7) Only offer children and young people a residential placement if: Their needs cannot be met at home AND all alternatives have been ruled out Follows a family request considered under the Children and Family Act (2014) (1.6.8) Residential placements should be as close to home as possible (1.6.9) Support families and carers to maximise contact (1.6.11) Plan towards a return to home where appropriate and review progress (1.6.12-15).

Making the right use of inpatient services Only use inpatient units if the person’s care needs cannot be met safely in the community, AND all possibilities for community support have been considered and exhausted – including with independent and expert input (1.8.1) Inpatient services should be as close to home as possible (1.8.5) Discharge plans should be developed from the time of admission (1.8.9) Plans should be reviewed at least every 3 months, including with the person, family, decision maker and behavioural expert (1.8.10)

Making it happen Evidence based framework to support people, families and communities Emphasis on leadership, values and practical recommendations which can make a difference Principles, guidelines and recommendations not instruction manual Further work to support implementation includes: Quality standards Quick guide for commissioners Work with system partners to publicise.

Links Learning disabilities and behaviour that challenges: service design and delivery https://www.nice.org.uk/guidance/ng93 NICE shared learning https://www.nice.org.uk/about/what-we-do/into-practice/shared-learning-case-studies Sign up for the NICE social care newsletter http://www.nice.org.uk/social-care-newsletter