This service model is about those people with a learning disability and autism who display behaviour that challenges, including behaviour attributable to a mental health condition. This includes people of all ages and those with autism (including Asperger syndrome) who do not also have a learning disability (as well as those who have both a learning disability and autism) and includes those people with a learning disability and autism whose behaviour can lead to contact with the criminal justice system.
This is a highly diverse group of people. The support they require will be highly individualised – tailored to their particular needs, strengths, interests and in some cases, the risks they pose to others (all of which might change over time). However, there are some everyday needs that services in any one local area need to ensure they can address. There are also some common deficiencies in how services currently address those needs in the community, with the result that, too often, people may end up in hospital (including through diversion from the criminal justice system) at a high human cost to themselves and their families/carers8, and when those circumstances could have been avoided. There are, therefore, also some standard shifts that services will often need to make.
The human rights of people who use services are incontrovertible and must be upheld at all times; consequently, there are several ‘golden threads’ that run consistently through the nine principles described and which should therefore be reflected in local commissioning strategies:
Quality of life – people, should be treated with dignity and respect. Care and support should be personalised, enabling the person to achieve their hopes, goals and aspirations; it should be about maximising their quality of life regardless of the nature of their behaviours that challenge. There should be a focus on supporting people to live in their own homes within the community, supported by local services.
Keeping people safe – people should be supported to take positive risks whilst ensuring that they are protected from potential harm, remembering that abuse and neglect can take place in a range of different environments and settings. A transparent and open reporting culture should ensure lessons are learned and acted upon.
Choice and control – people should have choice and control over their health and care services; they should make decisions about every aspect of their lives. There is a need to ‘shift the balance of power’ away from more paternalistic services which are ‘doing to’ rather than ‘working with people, to a recognition that individuals, their families and carers are experts in their own lives and can make informed decisions about the support they receive. Any decisions about care and support should align with the Mental Capacity Act. People should be supported to make their own decisions and, for those who lack capacity, any decision must be made in their best interests involving them as much as possible and those who know them well.
Support and interventions should always be provided in the least restrictive manner. Where an individual needs to be restrained in any way – either for their protection or the protection of others, restrictive interventions should be for the shortest time possible and using the least restrictive means possible, in line with
The service model describes a range of services and supports that should be in place within any local area. Depending on their needs and circumstances, people with a learning disability and autism and their families/carers should draw upon the support described in the model in a way that is right for them.
They should also be supported to navigate through an often complex and provoking anxiety system. Just as people’s situations and experiences vary (for example, some may have a long history of behaviour that challenges, whilst others may develop such behaviours as a result of temporary physical or mental health problems), they will become known to different local services in different ways and at different points in their lives. What works and is needed for each individual will look different, and not all aspects of the service model will apply or be required by everyone.
However, the starting point for everyone should be about access to support based on individual needs, through establishing an understanding of the historical and current factors that have contributed to the individual’s behaviour. Care and support should then be delivered to improve the person’s quality of life. For this to be successful, it will require multi-disciplinary and multi-agency working and skilled, informed responses from specialist health and social care services in partnership with the person and those who provide day-to-day support.
People who have come into contact with or may be at risk of coming into contact with the criminal justice system should have access to the same services to prevent or reduce anti-social or ‘offending’ behaviour13 as the rest of the population. They should expect services (including those provided by youth offending teams, liaison and diversion schemes, as well as troubled family schemes and programmes such as those for drug and alcohol misuse) to identify people with a learning disability and autism amongst the people they support, and to make reasonable adjustments so they can effectively help those people. This should be achieved through collaboration with specialist multi-disciplinary health and social care services for people with a learning disability and autism.
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