A Guide to Personalisation, Self-Directed Support & Personal/Individual Budgets
What does the concept of personalisation mean?
The concept of personalisation is an attempt to look at care and support for disabled people in a totally new way introduced in a Department of Health 2001 policy document entitled Valuing People. It starts with looking at each disabled person as an individual with abilities, preferences and aspirations and then trying to identify their needs and choices about exactly how and where they can live their lives in the most independent and fulfilling manner. This requires a major change to the concept of social care so that all the systems, processes, staff and service organisations work towards putting the disabled personfirst – rather than the interests of the care and support organisations.
In the past, the traditional approach working in line with the interests of the care and support organisations has meant that disabled people have not necessarily received the right help at the right time and in the right circumstances. Disabled people themselves have had little say in how their care and support has been delivered. This includes health and social services, opportunities for employment, leisure, education, housing and transport.
The aim of this person-centred planning approach of personalisation means that in future disabled people:
- Will receive support tailored to their individual needs.
- Obtain all the information, advocacy and advice necessary to decide for themselves about their care and support.
- Find a new collaborative way of working with the care and support organisations in the design, delivery and review of services.
- Develop partnerships with a number of local organisations to produce a range of services from which they can choose in order to live independent and fulfilled lives.
- Will be able to participate in all aspects of social, political and economic activity and play a full role in society.
It should result in a totally changed culture in the way care and support services are delivered.
What does self-directed support mean?
Self-directed support is part of this concept of personalisation and is designed to empower disabled people and place the principles of independent living at the core of the care and support service delivery system. It is based on the social model of disability* and aims to reduce or remove the physical, organisational and attitudinal barriers and obstacles that disabled people experience in the world around them and which prevent them from being active citizens in their communities. The keys to self-directed support are:
Under the new culture, disabled people will have the tools to enable them to take greater control of their lives and the support they receive so that they can assess their own needs, make their own decisions regarding the tailored support they need and manage their own risks. This will make require a major change in the manner in which Health and Social Care Trusts commission social care as the disabled people/service users become their own commissioners.
For more information on self-directed support in England, please see
How do Direct Payments fit into this?
Self-directed support builds on the basis established by the existing Direct Payments system as legislated for in The Carers and Direct Payments Act (N.I.) 2002 and the rights of disabled people as laid down in the Disability Discrimination legislation in Northern Ireland. Direct Payments started in the 1990s and have enabled disabled people to receive cash instead of services and use it to meet their support needs. Direct Payments have enabled many disabled people to live in their own homes, as opposed to care institutions, to buy specialist equipment, to participate in education and social activities and, most importantly to employ personal assistants to help with everyday tasks such as dressing and washing. Direct Payments have also been used to pay for personal assistants to provide support whilst the main carer took a break or for someone to accompany the disabled person on holiday.
Self-directed support builds on the platform of Direct Payments but instead of just providing cash to meet the needs of the disabled person, it looks at how the needs will best be met in a mixture of services provided directly and cash given to the disabled person to buy services. It is seen as the route to achieving independent living based on the following principles:
- the support is controlled by the disabled person
- the level of support is agreed in a fair, open and flexible way
- any additional help needed to plan, specify and find support should be provided by people (or user led organisations) who are as close to the disabled person as possible
- the disabled person controls the financial resources for their support and the manner in which the support is provided
- all the procedures and practices should be carried out in accordance with an agreed set of ethical principles.
Following an assessment of the needs of the disabled person, a Personal or Individual Budget is made available to the disabled person (or their representative) combining services and funds from the following sources:
« health and social care trusts
« community equipment providers
« disabled facilities grants
« housing related support
« Access to Work
« Independent Living Fund.
The disabled person is helped to devise a support plan under which he/she can access a wide range of services, providing that this is legal andmeets the agreedoutcomes. The Personal or Individual Budget is then used to obtain and/or buy the necessary services from:
- statutory social services
- private sector agencies and firms
- the voluntary or third sector
- user led organisations
- community groups
- neighbours, family and friends
- directly employed personal assistants.
A number of local authorities in England are working with an organisation called In Control which has designed a system of self-directed support which involves a seven step process. The Authorities in Wales and Scotland have decided to set up their own systems of self-directedsupport working in partnership with their local authorities, service providers, user-led organisations and voluntary/community organisations.
A pilot scheme for self-directed support/personal budgets is currently being carried out in Northern Ireland by the Southern Health and Social Care Trust in conjunction with In Control.
It is extremely difficult to take exception to any of the thinking or proposals behind the concept of personalisation. Anything which promotes the rights of disabled people and reinforces the principles of independent living is to be welcomed.
It will be interesting to see however how this initiative develops in a climate of fiscal restraint, budget cuts and public sector job losses.
*The Medical and Social Models of Disability
In the past, most models of disability assumed that the problems disabled people experienced were the direct result of their individual physical, sensory or intellectual impairment. In particular, the medical model of disability looked at people in terms of disease, abnormality and "personal tragedy" and assumed that the disabled person is the problem. The disabled person has to be adapted to fit the world as it is and, if that is not possible, the disabled person is shut away safely "out of sight" in a special institution or left isolated in their own home. Only the most basic needs of the disabled person are catered for and the disabled person is entirely dependent, a person to be pitied, patronised or even feared. The focus is on the impairment i.e.the inability to walk, to see, to hear etc. The responsibility and power lies within the medical and associated professions who seek to address the problem solely in terms of medical cures and scientific remedies.
The social model of disability looks at the problems of disability in the light of the barriers and obstacles that prevent disabled people from participating in any situation or activity. A clear distinction is made between impairment and disability:
· Impairment and chronic illness are the underlying fact of life for the disabled person e.g. a defective limb, sensory function, organ or mechanism of the body.
· Disability is the disadvantage or restriction of activity caused by a contemporary social organisation that takes little or no account of people who have impairment and allows barriers and obstructions to exist which exclude them from participation in the mainstream of social activities. Disability is therefore a particular form of social oppression and discrimination.
The social model clearly demonstrates that the solution to the "problem" of disability lies not in the medically-based cures and scientific remedies but in the restructuring of society to remove the individual and collective disadvantages faced by disabled people. These disadvantages are the result of a complex form of institutional discrimination which is as fundamental to our society as sexism, racism or religious discrimination.
For more information on the social model, we suggest you visit: http://www.selfdirection.org/dat/training?cmd=guest&p=%2Fcourse01%2Fwelcome.html