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"Itís being asked to be involved, thatís lovely, thatís so niceí"

One of the more welcomed findings from our research was the range of ways that people with learning disabilities were getting involved in the steering and managing of their local support organisations. We found many different examples of meaningful involvement, from annual feedback events to people with learning disabilities chairing steering groups. This was an important strategic priority for some organisations to be more disabled person led.

Fundamental to this is the recognition of the importance of enabling people to have their experiences, views and opinions listened to.

"We are funded to provide advocacy for Ö people [who] find it hard to have their voice heard, that may face barriers because of the disability they have" (Ellie, Independent Advocacy Project)

However, such advocacy projects are increasingly under funding pressure, and support cannot always be provided.

"I think we have seen a huge reduction in services here and people really struggling to access services that could support them and help them have their voice heard, and that maybe from mental health services to group work. Thereís not maybe quite as much group work as there has been historically" (Ellie, Independent Advocacy Project)

One manager outlined both the value of peopleís involvement in steering their activities, and the steps that need to be put in place to enable it to happen.

"Knowing what people want from us is really, really important, so we would have people on the boards that would have a learning disability with access to advocacy. So we have the steering group, which is probably a bit more of a supported group environment thatís facilitated by [support worker]. Itís chaired by a member of that group, and then they would look at the strategic development of the citizen advocacy, and then we try to have as much accessible [information] in that meeting as possible, so the policies are accessible, the workplans are accessible." (Ellie, Independent Advocacy Project)

The three steps referred to were: (1) that each contributor has had access to advocacy, to build their capacity to contribute meaningfully to the group, (2) that the group is supported by a paid facilitator to ensure the exchange between contributors is meaningful, and (3) that the policies for discussion are accessible.

In support of these considerations, one participant with a learning disability expressed her frustration when the relevant information is not made available. This can have a damaging effect on the person.

"Weíre supposed to discuss as a group about certain things that we do but in some cases that doesnít happen. So I feel betrayed in some way because I've not been given the right information, and being chairperson I should be first. I would just like it to be a bit more serious than laid back because we all have different roles" (Sally, self-advocate).

Everyone having a role is really important:

"Everyone had a chance to do it, which is a brilliant user-led kind of experience. And the chairperson, everyone has the opportunity to do that, and we like it. We can work on that sort of thing. Itís nerve wracking, but once you organise, plan, youíre familiar with the place, people who are going, itís good" (Self-advocate)

In addition to the three steps identified above, another organisation, The Book Shop Project, which supports volunteers with learning disabilities, found that giving learning disability awareness training can help with working with a diverse group. This also recognises that peopleís ability to participate may hinge on being able to opportunities for capacity building:

"learning disability awareness, but we call it about us training. So, everyone thatís part of the [organisation] has attended that training which is people learning about other learning disabilities, helping to understand people. That has been tremendous training because when you bring a lot of different learning disabilities together, it can be quite chaotic at times. Not everybody understands, not everybody can cope with some of the traits that come along with--, and that training has really, really helped everybody. So, ermÖ yeah, part of what weíre doing--, weíre seeing the need as we go and creating it. That has been very, very good training."

The voices of people can also reach beyond the organisation, to represent views at local authority level, where decisions are made:

"Itís our voice where we speak to the local authority, where our members talk to them and big organisations like health organisations about those bigger things that are going wrong for people. Or right." (Casey, Friendship Meet Ups)

And also people become involved in consultations organised by the advocacy group, with findings being fed into the local authority. Some self-advocacy groups do regular consultation work for the local authority.

One organisation has completely redesigned their management processes by setting up a steering group of adults with learning disabilities. When people with learning disabilities are given the opportunity to take a lead, we found that they began to recognise untapped potential and offering more. In some cases, other people or organisations spotted the potential of people to do it for themselves and supported them on their journey by building capacity, interest and activity through gradual steps. For example, X who was asked to become a Trustee of a learning disability friendship organisation, became the Chair of their Speaking Up Group.

One person with learning disabilities who was on an organisationís management group shared how this group differed from the board of trustees:

"The trustee meeting is actually just to go through what we have done from the management point of view to what they have done in the staffing, recruiting, how the other projects are going, but they donít actually go in details about finance [on our management group] because itís kind of a long--, itís money what gets spent, is this worth spending, is this a project worth spending on, that sort of thing. And overheads, all the stuff with overheads, the lights and printing and stuff." (Yvonne, LD Self-Advocacy Group)

When asked how this gets communicated to everybody who comes to the management group, she stated, ďNo, itís communicated better now, but thatís a bit weíve been struggling with a little bit.Ē

What learning is involved?

Getting involved in user-led groups was celebrated by our participants as worthwhile activity; it also involves a lot of peer-to peer learning. Participants with learning disabilities spoke about some of their peers as role models and they gave and received support in taking on new roles. Staff in organisations were often key mediators in such learning, having themselves learned how to facilitate rather dominate in advocacy work and so on. While much of the learning happens in situ, participants also referred to group and individual training as more pre-planned ways of developing the awareness, confidence, advocacy skills and knowledge about accessibility that was needed.

What more can be done?

In the move towards self-building social care organisations often know they need to transform themselves to survive and work within a different ethos and funding landscape. Local authorities and providers could do more to support day centres in transition to be more user-led by providing time and support for meaningful consultation and collaboration. Those involved in organisational transition and innovators seeking to set up new initiatives need to involve people with learning disabilities and their allies so they can all learn together throughout the process. Underpinning all this is self-advocacy and funding this makes financial sense in that it can reap the rewards of vibrant user-led communities that provide support.