THE ESSENCE PROJECT

Adult with learning disabilities

Case studies

Read the full case study for 'Employment support for autistic adults: economic evidence' here (PDF)
Martin Knapp, Valentina Iemmi, Michela Tinelli, Danielle Guy 2019

KEY POINTS

  • Employment support interventions provide individualised training and workplace support for autistic adults with the aim to enable autistic people to gain and maintain employment.
  • Research shows that supported employment for autistic adults can be successful. However, the research is based on a small number of small-scale studies targeting a subgroup of autistic people.
  • There is also a strong economic case for supported employment from both a health and social care perspective and a broader societal perspective, which includes productivity gains (based on employment support for the general population). In addition to being cost-effective, the intervention may also be cost-reducing.
  • There is a need to examine whether the outcomes of supported employment for autistic adults from current studies can be replicated on a larger scale and to a wider subgroup of autistic people.
  • The Lynx Resource Centre in Weston-super-Mare and EmployAbility in Surrey are two examples of successful implementation of employment support interventions for adults with autism. The former appears to be primarily funded by the local authority and the latter by Jobcentre Plus.

Read the full case study for 'Short breaks for adults with learning disabilities and behaviour that challenges: economic evidence' here (PDF)
Martin Knapp, Marija Trachtenberg, Michela Tinelli, Danielle Guy 2019

KEY POINTS

  • Although short breaks (respite care) are intended to give time off caring to carers for adults with learning disabilities and challenging behaviour, it is commonly provided as residential care intervention for the service users (rather than for the carers).
  • In evaluating short breaks, the work that fed into the NICE guideline did not find any robust evidence on their effectiveness or cost-effectiveness. Other information was available to suggest that the Guideline Committee should made a recommendation for short breaks that is potentially resource-intensive.
  • Additional economic analyses from a public sector perspective demonstrated that short breaks at various intensities can be considered cost-effective and potentially cost-saving.
  • Since the analyses were based on assumptions rather than evidence, NICE is very cautious about using the results to guide commissioning and provision decisions. Beyond the certainty of the potential cost range of short breaks, the economic analyses produced are speculative and their validity cannot be confirmed.
  • A variety of national charities currently provide short breaks and other services for those with intellectual disabilities and challenging behaviour as well as their carers.

Evidence

Adults with intellectual disabilities and challenging behaviour: the costs and outcomes of in- and out-of-area placements
Perry J, Allen DG, Pimm C et al Journal of Intellectual Disability Research, 57, 139-152. 2013

Background People with severe challenging behaviour are vulnerable to exclusion from local services and removal to out-of-area placements if locally available supported accommodation is insufficient to meet their needs. There are concerns about the high costs and potentially poorer outcomes of out-of-area placements but relatively little is known about how costs and outcomes compare with provision for a similar population placed locally.

Methods Costs, quality of care and a wide range of quality of life outcomes for 38 people with intellectual disabilities and challenging behaviour living in-area and 38 similar people living out-of-area were compared. The two groups were matched as far as possible on risk factors for out-of-area placement. The out-of-area group represented two-thirds of the total number of people who originated from the territory served by the largest specialist health service in Wales and were placed in residential settings at least 10 miles beyond its boundaries.

Results There was a mixed pattern of quality of care and quality of outcome advantages between the two types of setting, although in-area placements had a greater number of advantages than out-of-area placements. Unexpectedly, out-of-area placements had lower total costs, accommodation costs and daytime activity costs.

Conclusions No overall conclusion could be reached about cost-effectiveness. A number of potential reasons for the differences in cost were identified. Although additional resources may be needed to provide in-area services for those currently placed out-of-area, government policy to provide comprehensively for those who want to live locally, irrespective of their needs, appears to be attainable.

Autism Spectrum Disorder in Adults: Diagnosis and Management [CG142]
The National Institute for Health and Care Excellence (NICE) National Institute for Health and Care Excellence, London. 2016

This guideline covers diagnosing and managing suspected or confirmed autism spectrum disorder (autism, Asperger’s syndrome and atypical autism) in people aged 18 and over. It aims to improve access and engagement with interventions and services, and the experience of care, for people with autism.

In August 2016, 2 research recommendations were removed from this guideline.

Recommendations
This guideline includes recommendations on:

identification and assessment
interventions for autism
interventions for challenging behaviour
interventions for coexisting mental disorders
assessment and interventions for families, partners and carers
organising and delivering care
Who is it for?
Health and social care professionals (including those in the independent sector)
Commissioners and providers
Adults with autism and their families, partners and carers

Related NICE guideline:
APPENDIX 18:HEALTH ECONOMIC EVIDENCE – EVIDENCE TABLES OF PUBLISHED STUDIES Authors not listed

Care and Health Improvement Programme: Efficiency Project
Local Government Association Local Government Association, London. 2018

This report provides practice examples from ten councils who took part in the Care and Health Improvement Programme during 2016/17. It describes the innovative approaches they took to achieve greater efficiencies from their adult social care budgets and draws conclusions as to what other councils might learn from them. The examples cover three main areas: managing demand for social care by offering residents a different type of service; more effectively using the capacity in communities to help find new care solutions; and working closer with partners in the NHS to reduce pressures in the care and health system. They highlight the importance of councils dealing with people effectively at their first point of contact; the benefits of using strength-based approaches; that developing social enterprises can be a cost effective way of meeting demand and reducing shortage of supply; and the potential of collaboration between councils to reduce costs and demand for services. The 10 councils are: Bristol City Council, Poole Borough Council, Swindon and Wiltshire Councils; Norfolk County Council; Waltham Forest Council; Somerset Council; Newcastle City Council; Nottingham City Council; and Nottinghamshire County Council.

Care and Support of People Growing Older with Learning Disabilities [NG96]
The National Institute for Health and Care Excellence (NICE) National Institute for Health and Care Excellence, London. 2018

This guideline covers care and support for adults with learning disabilities as they grow older. It covers identifying changing needs, planning for the future, and delivering services including health, social care and housing. It aims to support people to access the services they need as they get older.

We have produced an EasyRead version and video to explain this guideline, which are available from information for the public.

Recommendations
This guideline includes recommendations on:

overarching principles
organising and delivering services
identifying and assessing care and support needs
planning and reviewing care and support
identifying and managing health needs
end of life care
staff skills and expertise
Who is it for?
Providers of social care, health and housing support for people growing older with learning disabilities
Practitioners in social care, health and housing who work with people growing older with learning disabilities and their families and carers
Commissioners and people with a strategic role in assessing and planning local services
Practitioners in other related services, including older people’s services, adult learning disability services, employment, education and criminal justice services
People with learning disabilities, their families, carers and advocates

Related NICE guideline:
Appendix C2: Economic report Bauer A and Knapp M

Challenging Behaviour and Learning Disabilities: Prevention and Interventions for People with Learning Disabilities Whose Behaviour Challenges [NG11]
The National Institute for Health and Care Excellence (NICE) National Institute for Health and Care Excellence, London. 2015

This guideline covers interventions and support for children, young people and adults with a learning disability and behaviour that challenges. It highlights the importance of understanding the cause of behaviour that challenges, and performing thorough assessments so that steps can be taken to help people change their behaviour and improve their quality of life. The guideline also covers support and intervention for family members or carers.

NICE has produced an easy read version for people with a learning disability.

Recommendations
This guideline includes recommendations on:

general principles of care
support and interventions for family members or carers
early identification of the emergence of behaviour that challenges
assessment
psychological and environmental interventions
medication
interventions for coexisting health problems and sleep problems
Who is it for?
Healthcare professionals, commissioners and providers in health and social care
Parents, family members or carers of children, young people and adults with a learning disability and behaviour that challenges

Related NICE guideline:
Appendix T: Health economic evidence – economic profiles Authors not listed

Circles of support and personalisation: exploring the economic case
Gerald W, Perkins M, Knapp M, et al Journal of Intellectual Disabilities, 20, 2, 194-207. 2016

Circles of Support aim to enable people with learning disabilities (and others) to live
full lives as part of their communities. As part of a wider study of the economic case
for community capacity building conducted from 2012-2014, we conducted a mixed
methods study of five Circles in North West England. Members of these Circles were
supporting adults with moderate to profound learning disabilities and provided
accounts of success in enabling the core member to live more independent lives
with improved social care outcomes within cost envelopes that appeared to be less
than more traditional types of support. The Circles also reported success in
harnessing community resources to promote social inclusion and improve
wellbeing. This very small scale study can only offer tentative evidence but does
appear to justify more rigorous research into the potential of Circles to secure cost
effective means of providing support to people with learning disabilities than the
alternative, which in most cases would have been a long-term residential care
placement

Economic impact of social care services. Assessment of the outcomes for disabled adults with moderate care needs
Deloitte Deloitte, London. 2013

This report provides evidence on the costs and benefits of providing care to working aged disabled adults with with moderate care needs

Evaluation of Integrated Personal Commissioning (IPC)
Thom G SQW Limited, London. 2018

The Department of Health has commissioned a summative evaluation of the Integrated Personal Commissioning (IPC) programme. The evaluation will be carried out by a consortium led by SQW, in partnership with Bryson Purdon Social Research (BPSR), Social Care Institute for Excellence (SCIE), the Social Policy Research Unit (SPRU) and the Centre for Health Economics (CHE) both at the University of York, and Mott MacDonald.

Integrated Personal Commissioning (IPC) was launched in April 2015. It is a partnership between NHS England and the Local Government Association.

IPC is an approach to joining up health and social care, and other services where appropriate. The purpose is to enable people, with help from carers and families, to combine the resources available to them in order to control their care. This is achieved through personalised care planning and personal budgets. IPC also aims to support people to develop the skills and confidence needed to self-manage their care in partnership with carers, the voluntary, community and social enterprise (VCSE) sector, community capacity and peer support.

Financial Benefits of Investment in Specialist Housing for Vulnerable and Older People
Frontier Economics Frontier Economics, London. 2010

This report recommends that the HCA should continue to prioritise investment in specialist housing provision, to include making the best value of existing stock. In addition, it states that the needs of vulnerable and older people should be embedded in the Agency’s Local Investment Planning process and that older and vulnerable people should be considered contributors to, and customers of initiatives and programmes outside of specialist schemes

Investing in Advocacy for Parents with Learning Disabilities: What is the Economic Argument?
Bauer A, Wistow G, Dixon J, et al British Journal of Learning Disabilities, 43, 66-74. 2014

Advocacy services may be called upon at the beginning of, or in the course of, child safeguarding processes. Without this support, parents with learning disabilities often find it difficult to participate effectively. We worked with four advocacy services, which together provided information on seventeen case studies. Costs of service provision were calculated for each case based on budget and activity information. Economic consequences of reduced child safeguarding activities were derived for cases in which there was evidence that the involvement of advocacy had changed the outcome. Incremental costs were calculated by comparing this against a vignette, developed from previous research, of a typical child safeguarding process that ends with the child being removed from the parental home.
On average, an advocacy intervention consisted of 95 hours of client-related work and cost £3,040. Potential savings included net benefits of £720 over the course of the intervention (average 9 months) to councils’ social services departments from reduced safeguarding activities, care proceedings and care provision, as well as potential longer-term net benefits of £3,130 due to increased access to interventions such as parenting programmes, benefits (debt) advice, counselling, support for alcohol problems and victim support. There may also be economic impacts for children in their later lives that were not included in our analyses, such as improved school performance. (For example, the cost of a child leaving without school qualifications has been projected to be £58,000.) Full details have been published.

Learning Disabilities and Behaviour That Challenges: Service Design and Delivery [NG93]
The National Institute for Health and Care Excellence (NICE) National Institute for Health and Care Excellence, London. 2018

This guideline covers services for children, young people and adults with a learning disability (or autism and a learning disability) and behaviour that challenges. It aims to promote a lifelong approach to supporting people and their families and carers, focusing on prevention and early intervention and minimising inpatient admissions.

This guideline should be read alongside the NICE guideline on challenging behaviour and learning disabilities: prevention and interventions.

We have produced an EasyRead version and video to explain this guidance, which are available from information for the public.

Recommendations
This guideline includes recommendations on:

strategic planning and infrastructure
enabling person-centred care and support
early intervention and support for families and carers
services in the community
housing and related support
services for children and young people
carers’ breaks services
making the right use of inpatient services
staff skills and values
Who is it for?
Commissioners and providers of health and social care services for children, young people and adults with a learning disability and behaviour that challenges
Health and social care practitioners working with children, young people and adults with a learning disability and behaviour that challenges
Providers of related services, including housing, education, employment and criminal justice services
Practitioners working with children, young people and adults with a learning disability and behaviour that challenges in other services or settings, including education, housing, voluntary and community services, employment and criminal justice services
Children, young people and adults with a learning disability and behaviour that challenges and their families and carers, including people who pay for their own care

Related NICE guideline:
Service models guidance: individuals with intellectual disabilities and behaviour that challenges Trachtenberg M and Knapp M

Mental Health Problems in People with Learning Disabilities: Prevention, Assessment and Management [NG54]
The National Institute for Health and Care Excellence (NICE) National Institute for Health and Care Excellence, London. 2016

This guideline covers preventing, assessing and managing mental health problems in people with learning disabilities in all settings (including health, social care, education, and forensic and criminal justice). It aims to improve assessment and support for mental health conditions, and help people with learning disabilities and their families and carers to be involved in their care.

Recommendations
This guideline includes recommendations on:

organising and delivering care
involving people in their care
prevention, including social, physical environment and occupational interventions
annual GP health checks
assessment
psychological interventions, and how to adapt these for people with learning disabilities
prescribing, monitoring and reviewing pharmacological interventions
Who is it for?
Healthcare professionals
Social care practitioners
Care workers
Education staff
Commissioners and service providers
People with learning disabilities and their families and carers

Related NICE guideline:
Appendix S: Health economic evidence –economic profiles Authors not listed

Money Matters: Reviews of Cost-effective Initiatives
Institute of Public Care The Institute for Research and Innovation in Social Services, Glasgow. 2011

This set of eight case studies, produced by the Institute of Public Care on behalf of IRISS (the Institute for Research and Innovation in Social Services), provides detailed analysis of the cost-effectiveness of a series of recent social care initiatives, ranging from nationwide and relatively high-profile schemes such as individual budgets to those thus far unique to one country, city or local authority area in the UK.

In each case, the report provides an overview of the initiative – its origins, including previous variants of the scheme, who it is intended to help, and how it works in practice – before justifying claims of cost-effectiveness by reference to detailed comparative costings, using one illustrative implementation of the scheme where the initiative is nationwide. Based on the analysis, the report sets out the initiative’s applicability to other settings as well as potential impediments to broader implementation.

The eight initiatives scrutinised are:

A study of Shared Lives schemes in south east England for providing care in the carer’s own home for individuals placed there by the local authority.
An extra-care housing scheme completed in Bradford.
Health in mind – social inclusion support for people with mental health needs in Bradford based round a series of mental health “well-being cafes”.
LinkAge Plus – analysis of nationwide DWP-funded pilot schemes for an holistic approach to provision of services for older people.
The Rapid Response Adaptations Programme – a Welsh initiative for providing adaptations such as ramps to let people return to their own homes.
A project in north west England to guide older people with low-level needs through a self-assessment process.
Analysis of various pilot sites taking different approaches to individual budgets, based on a broader evaluation conducted in 2008.
A project in two acute trusts in London to reconfigure hospital discharge procedures to emphasise rehabilitation.

People Powered Recovery: Social Action and Complex Needs. Findings from a Call for Evidence
Turning Point All-Party Parliamentary Group on Complex Needs and Dual Diagnosis, London. 2018

The UK All-Party Parliamentary Group (APPG) on complex needs and dual diagnosis was established in 2007 in recognition of the fact that people seeking help often have a number of over-lapping needs including problems around access to housing, social care, unemployment services, mental health provision or substance misuse support. This report sets out the findings from a call for evidence on how social action can improve outcomes and develop more responsive services for people with complex needs or a dual diagnosis. Social action is about people coming together to tackle an issue, support others or improve their local area, by sharing their time and expertise through volunteering, peer-led groups and community projects. The report provides examples of how social action can support recovery, self-worth and confidence, boost employment prospects and skills, reduce stigma, better shape services to meet people’s needs, contribute to better health and wellbeing and save money. It also looks at how to overcome some of the challenges and barriers to developing social action focused around complex needs. These include resources, stigma, procedural issues, leadership, commissioning structures and demonstrating benefits.

Positive behavioural support for adults with intellectual disabilities and behaviour that challenges: an initial exploration of the economic case
Iemmi V, Knapp M, Saville M, et al International Journal of Positive Behavioural Support, 5, 16-25. 2015

Caroline Reid and colleagues have previously shown that the PBS service in Ealing reduced emotional and behavioural difficulties and improved carers’ ability to cope. We collected further data on education, health and social care service use for ten children supported by PBS in Ealing. In Bristol we collected data for twelve children on behaviours that challenge, positive developmental skills before and after the intervention, and use of education, health and social care service by individuals with behaviours that challenge and carers. In Halton we collected service use data for five adults and information on behaviours that challenge, engagement in meaningful activities and community participation.
PBS service costs varied across the three sites from less than £200 per participant per week to around £700. Outcomes improved in all three samples. The total cost of health and social care services (and education for children) during the intervention averaged between £1500 and £2300 per week. Most children and adults supported with PBS were able to avoid residential placements or to be transferred to more service-intensive residential care.
In the absence of a comparator we conducted a Delphi exercise using six ‘case vignettes’. The aim was to estimate the cost of current packages of care that support people with learning disabilities and behaviours that challenge in England. Detail findings from this Delphi study will be published soon. They provided a benchmark for comparisons in the three local studies of PBS (and will be of interest more broadly). We concluded that although there is an initial increase in cost during the period when PBS is provided, avoiding residential placements or transfer to more expensive residential care has the potential to substantially reduce care costs over the longer term. Findings from this multi-faceted study are now being published , but have already informed analyses underpinning recent NICE guidelines.

Prevention. A Shared Commitment: Making the Case for a Prevention Transformation Fund
Local Government Association Local Government Association, London. 2015

This document identifies and collates key pieces of evidence about the cost effectiveness of prevention in order to make the case for greater investment in prevention interventions. The report recommends that the Government should introduce a Prevention Transformation Fund, worth at least £2 billion annually. This would enable some double running of new investment in preventative services alongside ‘business as usual’ in the current system, until savings can be realised and reinvested into the system – as part of wider local prevention strategies. Based on the analysis of an extensive range of intervention case studies that have provided a net cost benefit, the report suggests that investment in prevention could yield a net return of 90 per cent.

Shared Lives Costs and Effectiveness (SLiCE)
Brookes N Personal Social Services Research Unit, Kent. 2018

In the Shared Lives model, an adult who needs support and/or accommodation moves in with or regularly visits an approved Shared Lives carer after they have been matched for compatibility. At present there is a limited evidence base for Shared Lives. The proposed research will mean that a thorough exploration of how successful the model is and whether it represents a good investment can be explored. An outcome evaluation will include: collection of data including service user characteristics, risks and needs, case management information, service use, quality of life and well-being measures; data collection from a comparison group of Shared Lives-suitable, non-participating service users; interviews with service users and Shared Lives carers focusing on outcomes; and use of other administrative and survey data.

The Autism Dividend: The Report
Iemmi V, Knapp M, Ragan I National Autism Project, London. 2017

In 2007, research led by Professor Martin
Knapp from the London School of Economics
and Political Science demonstrated that the
economic consequences of autism in the
UK totalled £28 billion per annum. The study,
financed by The Shirley Foundation, stimulated
other work such as the National Audit Office
report in 2009, Supporting People with Autism
through Adulthood, which showed that
effective support could substantially reduce
costs. The Autism Act (2009) aimed to improve
diagnosis and support for autistic adults in
England, while in Wales the first ever national
strategy for autism was published in 2008, and
other political initiatives followed in Scotland
(the Scottish Strategy for Autism launched in
2011) and Northern Ireland (the wide-ranging
Autism Act (NI) 2011). These initiatives in
all four nations led to further development
of action plans, revised strategies and new
guidance. It looked as though a new era of
more effective recognition and support for
autistic people was beginning. Yet nearly
a decade on, the needs of autistic people
are still unmet and the expected economic
dividend never materialised. When the LSE
revisited the figures for 2014 using more
accurate information the total came to £32
billion. Something is clearly not working.

The cost-effectiveness of supported employment for adults with autism in the United Kingdom
Mavranezouli I, Megnin-Viggars O, Cheema N, et al Autism, 18, 975-984. 2014

Adults with autism face high rates of unemployment. Supported employment enables individuals with autism to secure and maintain a paid job in a regular work environment. The objective of this study was to assess the cost-effectiveness of supported employment compared with standard care (day services) for adults with autism in the United Kingdom. Thus, a decision-analytic economic model was developed, which used outcome data from the only trial that has evaluated supported employment for adults with autism in the United Kingdom. The main analysis considered intervention costs, while cost-savings associated with changes in accommodation status and National Health Service and personal social service resource use were examined in secondary analyses. Two outcome measures were used: the number of weeks in employment and the quality-adjusted life year. Supported employment resulted in better outcomes compared with standard care, at an extra cost of £18 per additional week in employment or £5600 per quality-adjusted life year. In secondary analyses that incorporated potential cost-savings, supported employment dominated standard care (i.e. it produced better outcomes at a lower total cost). The analysis suggests that supported employment schemes for adults with autism in the United Kingdom are cost-effective compared with standard care. Further research needs to confirm these findings.

Vision Rehabilitation Services: Investigating the Impacts of Two Service Models
Rabiee P, Frances Birkes Y, Buckley HL, et al Social Policy Research Unit, York. 2018

The importance of rehabilitation to local authorities (LAs) is highlighted in the recent Care Act 2014. LAs are required to promote well-being and independence before people reach a crisis point. An area of increasing need is that of vision rehabilitation (VR). Evidence to support delivery of vision rehabilitation (VR) is limited. This effectiveness of two models of VR services in England (in-house and contracted- out). The project comprises three work packages (WPs). In WP1, we will collect data on support needs, use of services and outcomes for 500 people with sight loss using VR services. Data will be collected at four time points, over a period of six months. This will be complemented in WP2 by qualitative interviews with service managers, front line staff and service users for in-depth exploration of how these two models work in practice. In WP3, an economic evaluation of VR services will be undertaken to compare the two models of VR services. The findings from the research will be useful for commissioners, practitioners and managers, as well as services users and their carers to inform decisions about the effectiveness and cost-effectiveness of VR services.

What Works in Community Led Support?
Bown H, Carrier J, Hayden C National Development Team for Inclusion, Bath. 2017

This report has been written to share the findings, learning and examples of impact identified from working with 9 authorities across England, Wales and Scotland who are working differently to improve the lives and support of local people.

It is essentially an evaluation report on the authorities’ progress towards the outcomes and longer-term aims of community led support over the last 18 months, but we believe it is more than that.

We hope the learning shared here will help demonstrate what’s possible when applying core principles associated with asset based approaches at the same time as tackling hard systemic and cultural issues around speed of response, ease of access, changing the nature of ‘assessment’, reducing waiting times and lists, turning eligibility criteria on their heads and making the best use of local resources for people with a wide range of support needs.

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