Community-based day activities and supports for people with learning disabilities
Messages from 'Having a good day' - Personalised planning with people
Person-centred planning enhances people's community involvement, contact with friends and family, and choice. It seems to have no impact in terms of achieving more inclusive social networks, employment and physical activity, and is best considered as an evolutionary step towards increased individualisation of supports and services.
- People's lives are improving through the opportunities that come from being community-based, and from services being more generally person-centred in the way they operate. Person-centred approaches are developing widely, although the level of formal person-centred planning is not high. There are issues involving facilitation and making plans happen for people who use community day services (see Smart commissioning). Person-centred planning linked to the mechanism of individualised funding and with strong family involvement is resulting in changes to the daily pattern of life for some people, but it's not many as yet.
- The information from person-centred plans about what people want and the support they need is only rarely being used to inform the strategic development and commissioning of day opportunities and support. Further, person-centred planning underpins the whole concept of individualised funding, but few areas are making links at a strategic level between person-centred planning, direct payments provision, development of individual budgets and day service modernisation. The strategic link is crucial because individualised funding for more people is dependent upon money being released from block services during day service modernisation.
- Supported employment schemes have an established approach based on individualised, person-centred planning for work. They are achieving positive results, though access to such support is still limited for people with higher support needs.
To develop person-centred plans with more people
Identify people receiving community day services who live in supported accommodation, and agree a plan with each person's support providers to ensure that just one, person-centred plan is developed and that it looks at the person's whole life. More people are using a variety of support services during the week, so link those services up around an individual. Form a 'planning partnership': agree which organisation will facilitate, and how the others will contribute to both the planning and the action afterwards, making sure the facilitator chosen has the knowledge, skills and support to do it well.
When people are newly referred to community day services, make sure there is a clear agreement between the service and their care manager about how they will be supported to develop a person-centred plan (if they don't already have one), who will facilitate it, and how it will then move forward. Make it the foundation stone of the service.
Ask families to get involved: give people and their families a blank person-centred planning book (such as a 'Me and My Life' book) and ask them to fill in what they can. Then support them to bring people together to build the picture up and develop the action plan.
If people have a person-centred plan, ask them about it. and then support them to tell other people about what they are trying to achieve. A good way of doing this is to support people to talk about their plan at reviews.
Make sure that, for a person from a black or minority ethnic community, their planning is facilitated by someone who has detailed knowledge of the cultural and faith requirements that might apply to them and their family.
To develop more person-centred community day services
Build an all-pervading expectation of 'person-centredness' through every structure and system. For example, in job descriptions, contracts of employment, vision statements, standards, induction programmes, contracts with external agencies, monitoring arrangements . everything!
Create a listening culture by helping people with learning disabilities to have a strong voice in developments and in planning their own daily lives, and by developing staff so that they listen and hear what's being said. As staff join community day services ensure that they receive information and training about how people communicate, and what they need to do to support and enable people's communication in community settings. This is a key task in both empowering people and in building inclusion.
Develop an internet-based 'community opportunities information network' - a local equivalent of the FPLD Choice forum, where people can post questions, share information and practice developments, debate practice issues and help each other solve problems. Make sure it has a local focus and that people with learning disabilities, advocacy groups and families can use it as well as service staff.
Pay attention to the team dimension - effective teams need people with a range of strengths and skills: see Skilled team management. Staff time also needs to be managed very actively and thoughtfully to achieve more personalised services and community inclusion. Beware repetitive, long-term service delivery patterns unless there is a clear purpose that's rooted in helping people to achieve community inclusion. A person-centred service is changing and flexible.
Use Shaping the Future Together (see Links and resources) or a similar structured approach, to analyse what people want to achieve and the supports they need, and use the information to shape new developments and modernisation plans.
To develop individualised supports and services
Read Key task 3: Organising resources.
Ensure that your area has a specific commissioning plan that says how individualised supports and services will be achieved, and that the contribution of, and implications for community day services are spelt out in it.
In the London Borough of Newham videos and multi-media are being used to help people understand and relate to their own person-centred plan. Multi-media support has been deliberately commissioned as part of a strategy to involve people fully in their planning.
The power of positive thinking
It used to take three adults to restrain teenager Richard Payne when he flew into a fit of rage and violence. It cost the taxpayer £350,000 a year to control the then 18-year-old, who would routinely attempt to smash windows and hit staff. Weighing fourteen-and-a-half stone, and standing over six feet tall, he could cut an intimidating figure.
That was three years ago. Today, thanks to a more holistic approach to the care and support of Richard, who has autism and severely challenging behaviour, his life has been transformed. Crucially, efforts have been made to help him communicate better and to remove triggers for his anxiety. Now 21, Richard can swim in public swimming pools, climb walls at the local sports centre in Wakefield, West Yorkshire, and go to the cinema - all activities once considered too high a risk...
Richard's turnaround began in 2003, when staff working for Choice Support were asked by his desperate social worker to devise a package of care. Adapting positive behavioural approaches promoted by the US-based Institute of Applied Behavioural Analysis, they looked at Richard's background and noted when his outbursts of aggression occurred. They soon discovered that one of the triggers was anxiety about time - and gave him a clock. It emerged also that too much choice disturbed and confused Richard because he is attached to routine and ritual. Charts outlining meal choices and activity planners were set up. Staff showed him ways of communicating any anxiety and developed 'breakaway' techniques, where staff would leave him if the behaviour was about to occur.
Although there was optimism, nothing could have prepared the support workers for the results. Reports show that incidents of restraint have been reduced from an estimated 180 a year to none, while cases of physical injury to Richard or to staff - previously common - have been reduced dramatically. 'Richard is now able to do more things he enjoys, make real choices about what he does and no longer lives under the shadows of three threatening support workers,' says Stephen Rose, chief executive of Choice Support. Furthermore, the cost of caring for Richard has been reduced by as much as £100,000 a year.
. Choice Support was forced to disband an agency team caring for Richard and employ more sympathetic staff open to fresh ideas. The charity describes the transition period as 'difficult' and admits it took several months to set up a new, person-centred service that proved to be the key to breaking the vicious, incident-restraint-incident cycle.
Caroline Briggs, director of finance and commissioning for Eastern Wakefield primary care trust, says she is delighted with the impact on Richard's life. 'He is able to go out and do a lot more and has reduced his needs dramatically. Hopefully, other people will benefit from this approach ..'
From: The Guardian, 13 September 2006
- The Rix Centre: multimedia advice and resources
- Acting Up: Multimedia work with people who have communication difficulties:
- Families Leading Planning UK
- 'Communication for person-centred planning', N. Grove N and B. McIntosh. An information pack from Foundation for People with Learning Difficulties (2005)
- Communication and Learning Enterprises - Information about communication aids and helpful technology.
- Listen to Me - A workbook for people to start their own plan
- Valuing People - There is a wealth of material and links on person-centred approaches section of the Valuing People website.
- 'Shaping the future together: a strategic planning tool for services supporting people with learning disabilities', A. Cole and A. Lloyd, FPLD (2005)