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Swindon advocacy movement - supporting parents with learning disabilities

Diana Reed, Advocacy development worker, describes her work with parents with learning disabilities at the Swindon Advocacy Movement in Wiltshire, UK. DPPi

“Advocacy for parents with learning disabilities, what’s that?” is the standard response I get from people when I tell them about the work in which I am involved. Most people, even, dare I say it … professionals, do not know what advocacy is. This means that they do not refer parents and they then do not get the help they need and deserve. Which is where I come in...

I work as an advocacy development worker for Swindon Advocacy Movement, which is a registered charity. Citizen advocacy is what we are all about, providing someone from the community to standby, empower, and speak up for someone with a learning disability. We have two full time workers, a co-ordinator who works with people with little or no speech and holds the charity together, and myself. We also have two part-time administrators and, an excellent management committee who oversee everything we do. We are proud of our committee, which is made up of six service users (including the Chair) and five non-service users. My job is to get involved in crisis advocacy situations with any person with a learning disability, and to train and support volunteers to become long term citizen advocates for parents. Citizen advocacy with parents is, I feel, really useful, as the advocate is often the only independent person they see, in that they do not get paid to be there and they are not related to them.

The parents I work with either self-refer, or are referred to us by a number of other sources, such as social workers/ community nurses/ family. They are referred for a number of reasons, such as financial problems or housing issues. In these sorts of situations I would partner a volunteer and a parent and let them work through the problems together with my support and if necessary using the resources and contacts we have.

A big part of my job with parents in crisis situations often, unfortunately, involves child protection proceedings. My support in this situation would be largely to help explain what is going on and to stand by the parent in the meetings with social workers and solicitors and also in court to, make sure they not only understand what is happening to them, but also most importantly that they get their opinion heard... and really that sums up what advocacy is all about!

First published in Disability, Pregnancy & Parenthood international, Issue 34, April 2001.

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