Community-based day activities and supports for people with learning disabilities
Messages from 'Having a good day' - Partnerships with people and families
People who use services, including families as indirect users, need to be central to the process of modernisation.
- Partnerships are developing through inclusion of people with learning disabilities and family carers on steering groups, reference groups and boards of management, and through person-centred planning based on circles of support (or planning circles), though as yet this is still small scale.
- Self-advocacy groups are leading innovative and successful projects which increase people's social and leisure opportunities, and provide information about what's going on locally - but the partnerships are fragile because funding is insecure.
- Parents and families are being seen as both an opportunity and a threat. Some are organising direct payments and individualised support for their sons and daughters, and initiating service developments. But the influence of parents is frequently described negatively in terms of blocking plans. The slow pace of change from day services to community, and the continued use of 'special buildings' are often attributed to parental concerns and pressure.
- When people have a chance to try things out, and have positive experiences, it helps them to embrace community opportunities.
- Partnerships with people are more likely to develop when there's face-to-face contact. So, make time to sit down and just talk with people. But make sure as well that there are structures for regular, more formal discussion with people and with family carers, and that they are involved in decision-making groups that have real power.
- Invest in developing people and families as 'allies for change' and as leaders. See the Leadership section for ideas.
- Build circles of support (planning circles) around people. and support them so that they can realise the plans they agree upon. There's a lot of guidance on this in the literature on person-centred planning - see Links and resources.
- Ensure there is secure funding for services that are led and run by self-advocates.
- Build contingency arrangements into a person's daytime plan and agree them with their family. It builds confidence in both family carers and staff.
- Help senior decision-makers and politicians to understand the direction of flow - day service modernisation, social inclusion, citizenship - and the issues that family carers are concerned about. Suggest a strategy for dealing with any parental pressure that arises.
- Don't demonise parents! There's a reason why families dig in their heels against change - the best way to appreciate their position is to get to know them better. You still may not agree on the way forward, but you can respect their position.
- Involve parents in planning for their own son or daughter.
- Start young.
- Develop services that work closely with families. This will happen more naturally if supporters work with people directly from home.
- Develop participation structures that value and make use of parental energy and expertise.
We as carers will need to understand that our roles will change. I as a family carer supporting an adult with learning difficulties/autism have taken on board the need to change and can now say with pride that the person I help to support has a lifestyle you can be proud of, and all this because of a direct payment. And I as the carer can now say I have my own life back and we are both happy with this.From: FPLD Choice Forum (Jan 2007)
Grapevine in Coventry, a voluntary sector provider, has people with learning disabilities occupying 50 per cent of the places on its board. It supports people to 'develop, lead and organise their own projects and activities' and aims to encourage mutual support. There is a campaigns team, a health promotion team, and D:vine - a group of young learning disabled people who run nightclub nights.
As part of the Eastern Region Partners in Policymaking consortium, Essex provides courses for people with learning disabilities and family members to develop as leaders. These were originally run for several years Family Leadership courses commissioned by the council and led by an independent agency, but now things have evolved as they have become part of the consortium.
The policy is having a real impact. More and more families are demanding ordinary opportunities for their sons and daughters. The transition coordinator says: 'I've seen it personally in my work around transition, with families wanting to know where employment support will come from rather than asking about day centres. The courses really help in moving towards ordinary lives. It's a slow trickle, but it's creating waves. The more parents and family members who go on the courses the better!'
- Top 10 tips for day service modernisation written by the North East Regional Forum of people with learning disabilities.
- Partners in Policymaking.
- 'Having a say' is a CD-Rom guide to including people with learning disabilities in the planning of services; it could be used as a training tool as well. From Learning Disability Wales (SCOVO) 2006
- 'Learning with families' is a video and training manual to develop and enhance relationships between family carers and staff Available from the Foundation for People with Learning Difficulties (FPLD)
- 'A voice of their own' a toolbox of ideas and information for non-instructed advocacy, A. Lawton BILD Publications (2006)
- 8 main points for involving service users and carers, CSCI/SCIE/GSCC/Skills for Care.