JCPSLP July 2014_Vol16_no2

Policy and practice

Policy and practice top 10 resources Sheridan Forster

H ere are my Top 10 resources for policy and disabilities. I am certainly not an expert in policy, but I think I have been able to make some small inroads. I have used resources that I have learnt about through my work as a speech pathologist, researcher, support worker, and friend to people with profound intellectual and multiple disabilities. I hope some of these tools and resources might be helpful for you. 1 Knowing what is happening elsewhere Knowing what is happening in other states and countries can be a powerful tool when advocating for local change. Being able to point people to best practice elsewhere creates advantage; competition is not the right word, maybe it is a sense of possibility. It sets up for the “If others can do it, then why can’t we?” attitude. Knowing that others have done something also decreases the risk for jumping into a new venture, something that some policy- makers and leaders might appreciate. In my area of supporting adults with profound intellectual and multiple disabilities, I keep an eye on what is happening in the UK and Netherlands. In the UK I keep an eye on PAMIS (www.pamis.org.uk), which is an advocacy/ research/lobbying/information sharing group focusing on adults with profound intellectual and multiple disabilities, and the PMLD-Network (listserve and website www. pmldnetwork.org). 2 Short snappy articles I have often been told, “Sheridan, not everyone is a reader of journal articles”; however, I have found that if the article is short (less than four pages) and thought-provoking then people are more likely to give it a go. I found this with an article that I wrote entitled “Age appropriateness: Enabler or barrier in the lives of people with profound intellectual disability”. This short opinion piece has been shared extensively, being read by policy-makers and disability support workers, and has served to generate discussions in a way that would not have been possible with a lengthy piece. • Forster, S. (2010). Age-appropriateness: Enabler or barrier to a good life for people with profound intellectual and multiple disabilities? Journal of Intellectual and Developmental Disability , 35 , 129–131. doi: 10.3109/13668251003694606 3 A knowledge of corporate writing and plain English Learning to write well is a lifelong journey (I am still learning). A few years ago, I did a TAFE unit on corporate writing. Learning about the importance of having one clear message has been invaluable. Too often, we obscure the practice. I am a speech pathologist with more than 15 years’ experience in supporting adults with

key point that we want our reader to get by giving too much information. I have also found that my skills in writing in plain English useful. Often when I write in plain English I try to address the following three things: 1. What is it about? 2. What might it mean to me/the reader? 3. What do you or the reader need to do now? These points serve well for most writing. Translating information into plain English has also pushed me to try to gain a strong understanding of information that I read. In plain English, you cannot hide behind jargon, generalisations and obscurity. • information on www.volunteer.vic.gov.au/toolkit-for- volunteer-organisations/manage-your-organisation/ marketing-and-communications, and • Scope’s “Clear Written Communication Guide, 2013” (http://www.scopevic.org.au/index.php/cms/frontend/ resource/id/1663/name/EE%20Style%20Guide_2013_ web.pdf). 4 Self-advocates and parent advocates The most powerful people for driving change are the people themselves. As is often said, “Nothing about us without us”; however, this is not so clear-cut for people with profound intellectual and multiple disabilities. Many of these people cannot use or understand speech, so self-advocacy is constrained. Families and disability support workers can speak up. The complexity of who they are representing – themselves or the person with a disability – must be acknowledged and accommodated. It is too dangerous for the population of people with the most severe disabilities to become even further disenfranchised if their key advocates are silenced too. Great policy and practice changes have often been made because of great self and family advocates. An example of this has been the Changing Places Campaign (www. changing-places.org) in the UK, where parents and other champions have successfully lobbied for the building of public toilets with adult-sized change tables and space for wheelchairs and support people. Working together with parents, support workers and people with disabilities is a key to change. 5 Video and photo resources of real interactions Videos of real people in real situations is a great tool, and talking about videos is even better. Abraham Lincoln once said, “Tell me and I forget, teach me and I remember, involve me and I learn”. We can say something, or read something, but real change is more likely when people see it for themselves and are actively involved through reflection and experience. As an academic and professional, I have had to concede that giving people the evidence in the form of articles is Useful resources include: • www.plainenglish.co.uk,

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JCPSLP Volume 16, Number 2 2014

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