Policy and practice
JCPSLP
Volume 16, Number 2 2014
105
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.
Useful resources include:
•
,
•
information on
and
•
Scope’s “Clear Written Communication Guide, 2013”
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 (
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
H
ere are my Top 10 resources for policy and
practice. I am a speech pathologist with more than
15 years’ experience in supporting adults with
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
), 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
.
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
Policy and practice top 10
resources
Sheridan Forster
