People with a learning disability and / or autism

Introduction: In recent decades there has been considerable progress regarding the rights and opportunities for people with a learning disability and/or autism. Long stay campus provisions run by health authorities are less common that they were although still present in some countries. Despite such general improvements, particular cohorts within this population continue to be poorly supported. In particular, people with a learning disability and / or autism (henceforth described as ‘people’) with behaviour that challenges and / or severe mental health problems are one of the most excluded and deprived groups in society. Discrimination, under-investment and lack of societal interest contribute to the poor quality of life and health outcomes commonly experienced by these people and their families. Furthermore, when there is policy interest, fragmentation between governmental departments, regional administrators, and frontline clinicians and practitioners prevent meaningful impacts being achieved and sustained in the long term. Policy & Population: This submission will analyse a series of national policy initiatives in England between 2011 and 2017 to improve the quality of life of these people. These initiatives were launched in response to the abuse suffered by people detained in the Winterbourne View assessment and treatment unit. The uncovering of this abuse led to the conviction of staff in this unit and reviews of the commissioning and practice arrangements that were in place. These subsequently led to national policy pledges underpinned by a range of national, regional and local governance structures, good practice guidance, care co-ordination processes and additional investments. Unusually for such policy developments there was a general consensus across political parties and stakeholder groups about the nature of the problem and the outcomes to be achieved. Implementing these in practice has though proved extremely challenging. The analysis will be themed around the ‘big windows, little windows’ framework developed by Exworthy & Powell 2004. This considers integration at, and between, different levels of a system, and the connected policy (goals and objectives), process (including causal, technical and political feasibility) and resources (financial and human). It will draw upon policy documents, independent reviews and empirical research in order to provide an objective critique of the aspirations, implementation and reality of these high profile policy developments. Highlights: The analysis will provide learning not only for those responsible for improving support to this group of people, but more generic insights regarding the large scale implementation of integrated care across multiple layers of a system and sectors.


Introduction
The NHS in England is implementing personal health budgets and Integrated Personal Commissioning (IPC) as part of a wider drive to make health, social care and education more personalised.This is in line with the NHS Five Year Forward View. 1 Personal health budgets are a way to improve outcomes by giving people more choice and control over the care they receive.They focus on personalised care and support planning, and let people choose how to meet their healthcare needs in different ways.
Personal health budgets can be managed in three ways: a direct payment, a third party budget or a notional budget.Introductory information about personal health budgets and the ways they can be managed is available on NHS Choices. 2 The evidence shows that, when implemented well, personal health budgets are a costeffective way to improve people's quality of life and experience of care.They also help people manage their own health and reduce their reliance on acute services.
While personal health budgets are relatively new for the NHS, personal budgets are have been used in social care for much longer.Building on what's been learned in both the NHS and social care, and because of the drive to increase integration across services, IPC is being developed as an approach to delivering care and support for people with the most complex needs.It enables people to join up the funding available for their health and care so they experience seamless care and support.The IPC operating model explains each element of IPC, and provides a framework that can be used to guide local implementation. 3

Who is this document for?
This quick guide explains the potential benefits of personal health budgets and IPC for people with a learning disability and/or autism.It is one in a series of quick guides that explore personal health budgets for specific groups of people or services.
This quick guide sets out what is currently known about: • the use of personal health budgets for people with a learning disability and/or autism • what the national ambitions are • what support is available to help clinical commissioning groups (CCGs) build the capability to deliver personal health budgets well for this group.
This quick guide is primarily intended for commissioners and providers who are developing local plans to implement personal health budgets, particularly those who are commissioning and providing learning disability services to support the expansion of personal health budgets in this area.
It may also be of interest to people working in the voluntary, community and social enterprise (VCSE) sector, and other people interested in the role of personal health budgets and IPC for people with a learning disability and/or autism.
The quick guides in this series should be read alongside the National expansion plan 3 for personal health budgets and IPC, and the IPC emerging framework 4 , which provide an overview of the current policy direction and context around the delivery and development of personal health budgets and IPC in health, social care and education.
Personal health budgets and Integrated Personal Commissioning quick guide People with a learning disability and / or autism 5

Personal health budgets and IPC for people with a learning disability and/or autism: An overview
Approximately 1.1 million children, young people and adults in England have a learning disability. 5Not all of these people receive NHS-funded learning disability support.Personal budgets (initially in the form of direct payments) have been available for social care since the late 1990s.In 2015/16, 143,000 people with a learning disability received services from their local authority and 99,000 of these had a personal budget. 6 Personal health budgets are being introduced in the NHS, and IPC will allow all of a person's health and care needs to be integrated.People who are in receipt of NHS Continuing Healthcare (NHS CHC), or continuing care in the case of children and young people, have the right to have a personal health budget. 7,8This includes people with a learning disability and/or autism.There is no right to a direct payment but CCGs do need to have the ability to make direct payments available.

Case study
In Hampshire, the local authority and the NHS are working together to enable young people with a learning disability in transition to adulthood to be offered a personcentred plan and an integrated personal budget.This approach has been built into the local plan for Transforming Care.Personal budgets, personal health budgets or integrated personal budgets will become the mainstream approach for everyone with a learning disability in future, with one aim being that people will be able to remain living with their families or in their own homes.

Case study
Katy is 24 and lives in Dorset with her parents.She has profound learning disabilities with complex health needs.She needs support 24 hours a day, seven days a week.Katy's personal health budget was used to prevent her moving into permanent residential care, and to pay for individual care at home.Katy's health, including psychological well-being, weight and vulnerability to infections, has improved dramatically, says Katy's mother, Jackie.

Background
As many as 31,000 people with a learning disability and/or autism need high levels of support and receive NHS-funded services.On average, around 2,500 people with a learning disability and/or autism are in specialist inpatient units 9 and it is estimated that around 24,000 people are at risk of displaying challenging behaviour, which could lead to hospital admission. 10Building the right support 11 is a national plan to, develop community services as an alternative to inpatient facilities for people with a learning disability and/or autism who display challenging behaviour, including those with a mental health condition.

Case study
In Devon, personal budgets and personal health budgets have been built into the local approach to Transforming Care.New Devon CCG and Plymouth City Council have worked with provider organisations such as Beyond Limits 14 to bring people back who were placed out of area.Each support arrangement is individually designed, with staff recruited to match the needs of each person.This lets people live in their own homes and have much more control over how they lead their lives.Personal health budgets and integrated personal budgets are now being extended more widely.
" People … should have choice and control over how their health and care needs are met -with information about care and support in formats people can understand, the expansion of personal budgets, personal health budgets and integrated personal budgets, and strong independent advocacy." Building the right support 15 3 Personal health budgets and IPC beyond Transforming Care

Support with managing long-term conditions
It is well recognised that long-term conditions are more prevalent in people with a learning disability and/or autism than those without.People with a learning disability and/or autism are also more likely to need additional support with managing these conditions.Personal health budgets may be an alternative to community and district nurses providing that support.Personal assistants, funded by local authorities or CCGs, can be trained and deemed competent (with appropriate clinical oversight) to perform specific clinical tasks, for example giving injections, administering nebulisers, and changing dressings.

Pete and Michelle's story 16
Pete is a young person with learning disabilities who lives with his family in Nottingham.
Pete has an integrated personal budget and a person-centred plan which covers all his needs including health, social care and education.He and his mum have chosen their own personal assistants who have been trained to help Pete manage his diabetes.As a result he is able to stay living at home rather than entering residential care.
Personal health budgets and Integrated Personal Commissioning quick guide People with a learning disability and / or autism 7 Some areas have processes in place that allow healthcare tasks to be delegated to personal assistants, and people like the flexibility this brings.The Personalised health and care framework contains best practice and learning around delegation. 3 As the rollout of personal health budgets continues, NHS England expects to see an increase in the number of people who want their personal assistants to carry out health tasks.
During 2017/18, NHS England will further explore what this might look like and analyse what the implications are for providers.
People with a learning disability and/or autism may access other services where personal health budgets are being considered, for example specialist equipment, wheelchairs, continence services, hearing services and end of life care.More work is needed to fully understand the implications and impact of introducing personal health budgets in these services.
During 2017/18 NHS England will work with key partners, including IPC areas, VCSE organisations and people with experience of receiving personal health budgets, to explore the potential and develop practical models for introducing personal health budgets into new areas.

Role of personal assistants in acute settings
Personal assistants can play an important role when the person they care for needs treatment in hospital, or visit as an outpatient.Personal assistants can develop a detailed understanding and knowledge of the person they care for, which hospital staff cannot fully develop in a busy acute ward or during an outpatient appointment.
The personal assistant they know can help the person understand what is happening and help them communicate their wishes and preferences.In addition, the presence of a personal assistant can reduce the stress and anxiety of being in a clinical environment, and so help to remove a cause of challenging behaviour.
During 2017/18 NHS England will work with key stakeholders, including NHS acute providers and people who employ personal assistants, to explore how personal assistants are supporting people in hospital and whether this is something that can be promoted in future.

Ambition and support available
NHS England is supporting all 48 Transforming Care Partnerships in England make personalised care the mainstream approach for people with a learning disability and/or autism who have challenging behaviour.
This means all areas will put in place the capacity to deliver personalised care and support plans.They will also proactively offer personal budgets for social care, personal health budgets, and integrated personal budgets (which join up funding from health and social care).
Many people with a learning disability and/or autism already have the right to a personal budget for social care or a personal health budget for NHS Continuing Healthcare (or children and young people's continuing care).The aim is for this to become the mainstream approach for people with a learning disability and/or autism who have challenging behaviour.This will include people being discharged and people who may be at risk of admission to specialist settings.The approach should include children and young people.
Forty-eight Transforming Care Partnerships (TCPs) 12 have developed plans to reshape local services based on a new service model for NHS and local authority commissioners that defines what good services should look like.13Personalhealth budgets and IPC will be a key part of 'Building the right support'.People with a learning disability and/or autism are also a core group in the IPC programme.