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Annex 2: Person-centred services - good practice
Person-friendly services
The same as you? described how people should be involved in decisions about their lives:
At the centre of this is a major shift to person-centred and needs-led approaches, which the individual at the heart of any decisions made. For that to work, people with learning disabilities and autism spectrum disorders need better information to make more informed choices, to be supported by an advocate if they want, and to have more control over their lives and services.
(The same as you? 2000 p. 107)
When services reflect the principles in The same as you?, they should be centred on the person. The starting point is that services should respect people, listen to them and act on what they hear.
By services, we mean all services which people with learning disabilities and people with autism spectrum disorders use. This includes health and social care services that focus on the needs of people with learning disabilities and autism spectrum disorders, the general health and local authority services that everyone uses, and services like shops, housing, transport and leisure facilities which are provided by a wide range of people.
Why this matters
We think these are the features of a good service.
- It values each person.
- The staff think about what will work for each person.
- It is easy for someone to ask for what they want.
- Staff encourage people to ask, and think of ways which will make it easy for someone to communicate in the way they find comfortable.
- Staff realise that it isn't easy for people to raise points if they are not used to being listened to, or if the matter worries them.
- Staff listen to what people say, and act on it for that person.
- When something isn't right, staff work to put it right as quickly as possible. They tell the person what is happening.
- The service works in partnership with people who use it and with families and other people, including advocacy projects, to try to make things work as well as possible.
- Staff think about what they are hearing from the people who use their service. They use the feedback from one person to also improve the service for other people.
- Staff make a real effort to find out what things are important in a person's life and act positively upon them.
The service works around the needs of the person. It does not expect people to work around what suits the service.
There are now many other standards which expect various services to respond to the needs of individual people.
Services should work well for everyone. Good services aim to work well for the people who have the most need, for people who find it hard to explain what they want, and for people who have few other people in their lives to help them get what they need.
They also recognise that some people need some extra help to explain what they want - which is why the arrangements for people speaking up for themselves and advocacy are essential.
Other ways for people to have a say
During the past few years the Scottish Executive has been encouraging public services to do more to involve the people who use their services and people in the local community generally. These arrangements should give people with learning disabilities more say in the services they get.
There have been particular efforts in health services - called Patient Focus and Public Involvement. Each NHS Board has a strategy for involving people, and there are many local projects such as patients' reference groups. The Scottish Executive is also requiring health services to do more to make sure that services work for individual people - especially people with disabilities, people from minority ethnic groups and other people who often feel left out.
The same as you? - new ways of working
Implementation of The same as you? across Scotland is demonstrating new ways of working and new roles for individuals with learning disabilities and autism spectrum disorders, family carers, and for professionals. The following sections describe work in Fife and the experience of local area co-ordinators.
Say Project
Active Partnership
Our key objective is to engage the people of Fife in identifying what needed to change first and to enlist their assistance to make these changes happen. Four major stakeholders conferences were held and 11 key themes for change were identified. 11 working groups were set up to take necessary actions to realise the changes.
Each working group has diverse membership with people who use services, parents, carers as well as staff from the voluntary and statutory sector playing their part.
Some of the working groups are chaired by parents, some by people who use services and others by officers. Everyone has an equal place at the table and an equal voice. Administrative support, a budget and facilitation where necessary was built in at the beginning so that the groups had real power, real influence and a real voice. Many innovative projects have been devised and created by the working groups. These include:
- Liaison nurse post established for people with a learning disability
- A cookbook to encourage health eating for people who have difficulty with reading
- Improved availability of learning disability information in local libraries
- Improved leisure facilities for people with profound learning disabilities through partnership working with Fife Tourist Board and Fife Community Services
- An advocacy service throughout Fife
- A joint postural management service for people with complex care needs
- A Moving On booklet designed to help young people and families through the transition to young adulthood
- Over 1000 people undertook person-centred planning training with people who use services, family carers and staff training together
Empowerment
To properly involve and empower people, we realised that we needed to invest in those people. We wanted to reach a point where adults with a learning disability felt confident and comfortable in taking part in committee meetings, Board meetings, speaking at major conferences and ensuring that their voice was heard in every process.
'It's Your SAY' was set up to help us achieve this. Adults with a learning disability who wish to take on these kind of activities have been identified and local area committees set up. Training from St Andrews University has assisted in developing people's capacity and confidence. Already individuals from the groups are helping us design recruitment processes and are involved in formal recruitment interviews for staff at all levels in the service. They are also members of the SAY Board, a multi-agency steering group for the SAY Project and most recently they have connected with Dundee University School of Social Work to assist first year social work students develop awareness about the wishes and aspirations of people with learning disabilities.
Over time, these local committees will actively contribute their views and ideas and shape the policies and procedures within the statutory agencies in Fife. In that way those agencies will know that they are doing the right things, in the right way, at the right time.
Local area co-ordination
Another recommendation of The same as you? was the establishment of Local Area Co-ordination as a new way of working with people with learning disabilities. In some local areas, Local Area Co-ordinators ( LACs) were appointed simultaneously with Co-ordinators of independent advocacy services. In these areas Local Area Co-ordination and Advocacy have complemented each other with individual Co-ordinators having good communication and awareness of their different roles.
Some LACs have completed advocacy training to help ensure their understanding of relevant issues.
There are circumstances in which LACs may, for some individuals, perform 'advocacy' tasks in their effort to be person-centred and respond to the wishes of the individuals that they support. LACs will also participate in group advocacy, campaigning for the rights of all individuals with learning disabilities to be included in the wider community.
However, as most but not all LACs are employed by the local authority, they are well aware of the potential conflict this could create where the individual may have a complaint about the local authority services. LACs recognise the limits to their independence and will readily refer people to independent advocacy services in such cases.
LACs are also trying to balance the needs and wishes of people with learning disabilities and their family carers. Where there is a potential conflict of interest between the views of the individual with the disability and their parent or carers, there may be a need for more than one advocate to be involved as both may require support to express their views and negotiate a solution. LACs may act as informal advocates for one party in such situations, especially when there are not enough trained independent advocates available.
This has been highlighted by a situation when a family who had been supported by the LAC found themselves in a very sensitive and stressful situation. There were major issues with most of the people concerned and the family found themselves separated for some weeks each not knowing or fully understanding what was going on. The LAC had to take on board the issues this brought and find ways to negotiate and advocate for both the people concerned. This was a situation where more than one advocate was required and where eventually the independent advocate came on board.
On reflection of the situation the role of advocacy and the important part it plays is still in the early stages of understanding by both people wanting to use the service and also with professionals who could benefit by the support advocacy can have on such sensitive issues as family relationships.
Other moves to improve services
Other things have happened to improve the services that people with learning disabilities receive. Several bodies have been set up or given more powers in the last few years:
- The Care Commission, which sets the standards for social care services - such as home support and residential care. It also inspects services, to see that the standards are met.
- NHS Quality Improvement Scotland, which sets standards for all health services, and will also be carrying out reviews.
- The Scottish Social Services Commission, which says what training social workers and support staff need to have.
- NHS Education Scotland, which says what training health care staff need.
- Disability Rights Commission, which will see that the Disability Discrimination Act is implemented throughout the UK. This affects all of the services people with learning disabilities use - ordinary and mainstream services as well as health and social care services.
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