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"Going to YOUR VOICE has helped her to be more confident in talking about important issues’"

One of the most important building blocks necessary to support people to live a fulfilling life is the importance of self-advocacy opportunities. Building people’s capacity to self-advocate gives people with learning disabilities the confidence and skills to have a voice and get their voice heard. Having a voice enables them to open up and express their interests, and to take more active steps towards them.

Several of the support organisations in the research shared their experiences about how important it was to recognise the benefits of advocacy and to facilitate different forms of advocacy in their community. According to one organisation, advocacy enabled people to build their capacity to live more independently:

"The positive developments of advocacy are where somebody becomes more and more independent and doesn’t need us so much, I mean that’s where advocacy is useful and I think one of the really positive things about Transform is there are, I mean there’s a list of people who only get minimal support with us, because they don’t need it." (Anya, Transform Self-Directed Support)

There are different types of advocacy, including:

  • citizen advocacy (long-term partnership)
  • statutory/professional advocacy (paid independent advocates usually during times of major change or crisis)
  • group or peer advocacy (people with shared experiences, positions or values coming together in groups to talk and listen to each other and speak up collectively or one-to-one)
  • self-advocacy (an individual communicating his or her own interests, desires, needs and rights)

For more details, see SCIE: Types of advocacy

While statutory/professional advocacy is vitally important in helping people in times of crisis or major change, for the purposes of self-building community lives, according to several participants, the ultimate aim of all forms of advocacy, should be to support people to self-advocate as far as they are able to, a point also echoed by SCIE. The goal of self-advocacy is to build a person’s capacity to decide what they want and to carry out plans to achieve it.

One manager of a user-led organisation, LD Self-advocacy group, explained the importance of facilitating friendship opportunities as a first stepping stone in enabling people to gain skills in self-advocacy:

"So, what we do is we offer--, we have a sort of theory of change which is how do we support people to become strong self-advocates. So, it starts with friendships, so in order to speak up for yourself, if you have a strong support peer group or you are able to do the basics, like form a friendship, that helps you to be able to speak up. It helps you to be able to form relationships and you know, like coming into a cafe here and ordering a drink, so that--, so to do that we have a project called the Friendship Meetups, which supports--, has supported over 2000 people with learning disabilities in [the area] to make friends in the community, so we use public venues. We don’t kind of hire a hall and shut everybody in, we’re very much here in [the cafe] or in the pub and that is again, run and lead by people who have a learning disability so they’re very much in control of what we do. And currently we have about 400 people that attend, sort of, over the year." (Casey, LD Self-advocacy group).

Another stepping stone towards enabling people to self-advocate is the role of citizen advocacy. This refers to partnerships that are long term, and build up over time, lasting as long as the citizen advocate and the individual want them to. One of the advocacy organisations we spoke to said that they no longer have the capacity to provide this model of advocacy, despite the benefits they described with it:

"It’s worked so well for adults, and particularly adults that would face barriers because of a learning disability--, I would say that group of people have probably benefited the most from the citizen advocacy model. It’s not huge big numbers but actually it creates real change, you know, has such a lasting impact on people’s lives." (Ellie, Independent Advocacy Project)

Typically, citizen advocates are now ordinary unpaid members of the local community, and usually operate with support from a coordinated scheme. For organisations, advocacy – particularly citizen advocacy – can also enable more people with learning disabilities to benefit from the opportunities being promoted by self-directed support.

The capacity building potential of advocacy was also noted by another participant, as it can take the pressure off organisations to push the self-directed support agenda. It does this through empowering their ‘client group’ to take up the mantle themselves (i.e. it empowers the demand side of support):

"It’s difficult, because we do want to work collaboratively and we want to work in partnership with other external professionals, health, social work, advocacy, and actually advocacy are probably the biggest assist of help to people, because often you don’t want to be continuously pushing the agenda because it can be misconstrued as you just want to keep the business, or you just want to have extra cash for stuff or whatever. Whereas advocacy can be that independent voice, so when things become more complex, or more difficult when we’re sort of trying to promote further the kind of principles of SDS with individuals in the local authority we often will seek advocacy, but we know that they’re also stretched, so again the advocacy services where they used to kind of be more on tap and they’d go out and meet people and they’d know them regularly, again it’s about is there a particular issue, can we look to get your support for this individual, for them to have an independent voice in this process." (Anya, Transform Self-Directed Support)

We also learned that once a person sees themselves in a more positive way and is inspired to act, gaining the right opportunity at the right time combined with the right information and support is important.

In our research, we saw at first hand the extent of the impact that self-advocacy can have on people’s lives. In one example, an advocate reported that a participant with learning disabilities had gained the confidence to talk about important issues in her life and the capacity to take on a treasurer role in her local self-advocacy charity:

"Amy is someone who likes to have her voice heard. Going to YOUR VOICE has helped her to be more confident in talking about important issues. She is the treasurer for the charity and manages their finances. In general this is something she is now very good at, she manages all of her own finances herself." (advocate of Amy)

Despite these benefits, self-advocacy is under real threat. Increasingly they are starved of funding and geographically they are highly variable. Research by Barod CIC and Jan Walmsley found that around 100 self-advocacy organisations operate in England, however they are unevenly spread. Lots are in the north west of England, very few in the East Midlands or the South West, and, considering its population, relatively few in London.

To illustrate the challenges, one organisation we interviewed spoke about no longer having the funding to pay staff to facilitate their self-advocacy group. A support adviser told us:

"Advocacy can be that independent voice, so when things become more complex, or more difficult [for example] when we’re trying to promote further the kind of principles of self-directed support with individuals in the local authority, we often will seek advocacy, but we know that they’re also stretched" (Anya, Transform Self-Directed Support)

What learning is involved?

Self-advocacy organisations are good places for learning skills and building confidence. Our research showed people with learning disabilities supporting each other in tackling new challenges by offering emotional support, encouragement, and practical information. They learned to take on new roles as mentors, organisers and trainers as well as how to speak up, make decisions and raise awareness. The staff supporting advocacy learned from them as well as guiding them. Some of the key learning here is about attitudes and expectations.

What more can be done?

Commissioners could recognise the value that self-advocacy groups can bring to the social care field and support groups that seek to facilitate it (e.g. organisations such as People First and other advocacy providers).

Support organisations would do well to facilitate and promote the benefits of group, peer, and self-advocacy.