Community-based day activities and supports for people with learning disabilities

Messages from 'Having a good day' - Leadership

What research tells us

If there isn't clear direction and leadership locally it's a barrier. Change needs to be led, and people with learning disabilities, family carers, staff, employers and community members can all be leaders.

What's happening in practice at the moment

Valuing People made it clear what services should be helping people to achieve: self-determination, social inclusion and an ordinary life. But the way that local areas are organising resources to achieve those things is very variable. They reflect local resources, political priorities and ethos. Power and decision-making about major change does not lie with leaders of local authority learning disability services, and there is increased demand on fairly static or reducing budgets. These things can get in the way.
Not all people in management positions are good leaders, and there are still a lot of people in powerful positions who do not believe that community options are appropriate for all. Where this is the case change is being achieved much more slowly. Individuals who take the wider view, develop networks, and are committed and determined to achieve community inclusion can have a really positive impact - whatever role they are in.
There is much more that could be done to develop people with learning disabilities and families as leaders. For example, there is little happening to develop leaders from within black and minority ethnic communities, and to support the development of services that are controlled and led by people with learning disabilities.

Pointers for development

Why not create a briefing pack for senior managers, politicians and board members? It's important to keep it brief, so you could just use the Framework for reflection (26kb PDF file), which is based on the 13 key ingredients highlighted in this guide. Try to get to talk to them face to face rather than just sending information by email.
Build up a collection of stories that show how people's daily lives have changed. Help people and their families to write about what their lives were like then and now and circulate them widely. Include stories about people with complex and high support needs. Generally, be proactive in developing strategies to demonstrate what actually works.
Make sure that there are clear statements about what community services are working towards achieving in terms of people's daily lives, with descriptions and examples of what these are actually like in practice. Make the statements clear and real.
Demonstrate how, in the longer term, money can be saved by creating person-centred community support for people with high support needs.
Leaders of day service modernisation are sometimes in the firing line, so use national directives and policies to de-personalise debates if needed, and talk about the changes in the language and framework of the council's local social inclusion policies. Back this up with real accounts of successful change, and demonstrate consensus through a change leadership group that involves people with learning disabilities, family carers, the independent sector, and staff in different roles.
It can really help to identify potential leaders beyond the confines services and management roles, and bring them together to work to move things forward. Support people to go on leadership courses, but bring courses in to the local area so that it's easier for families to take part. And don't forget to develop yourself as a leader. Read, talk to people, go to conferences, join networks . build up your knowledge and skills, and use them!
Support ideas and initiatives that are suggested by people with learning disabilities - but don't take them over! Give them the help they need to develop and run things themselves, as happened with Stars in the Sky.

Practice example

Stars in the Sky is a dating and friendship agency run by people with learning disabilities. It was set up by two women with support from Haringay Association for Independent Living, and became a registered company during 2005. The two women became the directors of the company. The agency won a community care award in 2005. For more information see 'Reach for the stars' in Community living 19.1 (Aug/Sept 2005).

Links and resources

For information about day service modernisation and what it means, see the resources/getting a life section of the Valuing People website.
The Ethnicity Training Network at the University of Leeds & Wakefield College offers a three-day training course for family carers from minority ethnic communities. It enables carers to deliver training within the health and social care arena, and leads to a nationally recognised certificate.
Tomorrow's Leaders: a leadership programme for people with learning disabilities who are 'already strong leaders and want to get even stronger'.
Partners in Policymaking runs several other courses to develop family carers and people with learning disabilities as leaders.
Stories on the In Control and Individual Budgets websites, especially Ben Grainger's and Joe Tomlinson's stories.