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ACQ
Volume 12, Number 3 2010
ACQ
uiring knowledge in speech, language and hearing
governance, communications and marketing, the Centre for
Promoting Health Independence (CHPI), service redesign
and the Project Unit. Clinical expertise is drawn from speech
pathology, audiology, occupational therapy and nursing.
Having a broad membership allows us to tap into
opportunities the clinicians in the group may not ordinarily be
exposed to. Similarly the non-clinical/managerial staff in the
group take away with them an improved understanding of
the clinical issues for our patients. Networks formed through
our members have been instrumental in raising the group’s
profile within the organisation, forging links and partnerships,
creating opportunities and broadening the perspectives of
everyone involved.
4. We have a mandate
Having an awareness of the relevant anti-discriminatory
legislative acts of parliament as they relate to people with a
communication disability is an important tool in lobbying for
change. These include the federal
Disability Discrimination
Act
(1992), the
Human Rights and Equal Opportunity
Commission Act
(1986) and
Racial Discrimination Act
(1975),
and the Victorian state Disability Act (2006). We know that
communication disability is a hidden disability in many ways
and the specific needs of those with communication
problems can be lost within broad overarching guidelines.
Healthcare organisations may well be meeting requirements
of those with physical disabilities but groups like the CACIG
can highlight where our interpretation of the legislation has
fallen short for those with communication support needs.
In addition to the legislation we have found it useful to
be aware of our own organisational vision and mission
statements, our charter of patient rights and responsibilities,
documented models of care, and overarching accreditation
standards and guidelines. The principles of equity of access
and patient participation are certainly embedded in many
of Barwon Health’s healthcare policy documents, as they
would be in many organisations. Where this is the case
we can assist decision-makers to make the next step in
defining what such principles mean specifically for those with
communication support needs.
5. Use conceptual models
Using conceptual models that utilise a common language
and help simplify things for others was another useful
strategy. We understood the broader conceptual framework
of the ICF but we needed to simplify things for our
colleagues and ourselves. In practical terms most people
don’t have time to engage in the kind of discussion
necessary to fully appreciate the ICF, let alone apply this to
CA. This time the work of Susie Parr and her colleagues
helped to simplify and visually conceptualise where the
barriers might be. With the Communicative access triangle
(Parr et al., 2008) it is possible to show that the barriers to
communicative access potentially occur in three main areas:
in our interactions with others, in the documents we produce
and in the physical and attitudinal environment where we
offer our services. Kagan and her colleagues have now
developed the Living with Aphasia – Framework for Outcome
Measurement (A-FROM; Kagan et al., 2008). The A-FROM is
a user-friendly framework adapted from the ICF (World
Health Organization, 2001) and is a conceptual guide for
thinking about outcomes of aphasia interventions. The
A-FROM can be used to provide a common platform for
thinking about outcomes but is also potentially a valuable
visual tool for communicating to clients, clinicians and
managers about communicative access.
a different way and saw that a significant number were
unable to understand the information they received on their
journey along the continuum of care. We could see that this
situation made people feel frustrated, embarrassed, and
incompetent and that some were simply excluded from
activities. This included people like Lila in the palliative care
unit who got a packet of pepper for lunch, because she
could not read the menu or write her choices. Or Edward,
who was assessed as having a potential delirium until his
wife came in with his hearing aids. The authenticity of these
stories moved us and helped focus our attention. Sharing
these with leaders in our organisation has proven to be one
of our most powerful tools in motivating for change.
To keep close to the experiences of real people using
our health services we invited Elizabeth, an interested
consumer, to join the CACIG. Elizabeth has continued to
provide the group with her essential and unique viewpoint,
drawing on her own experiences as carer for her husband
who is hearing impaired. She continues to keep the group
accountable and focused on the user’s experience and her
input has been invaluable.
2. Make it values driven and
evidence based
Embedded in the task of introducing the concept of
communicative access to decision-makers is the challenge
of convincing others that CA deserves serious consideration
alongside the ever-pressing issues of reducing length of stay,
managing beds, and balancing the healthcare budget.
Articulating the importance of CA for ourselves was vital
before we made any attempt to convince others. This
required a solid understanding of the values and evidence
that ignited our passion in the first place.
Through our reading of the literature we were able to
elucidate our values and realised in the process that these
values were consistent and fundamental to major trends in
healthcare reform internationally. We realised that the basic
values of equity, solidarity (societies’ collective responsibility
to care for others) and participation were fundamental to
CA just as they are fundamental to the provision of quality
healthcare overall (World Health Organization, 2005). We
could argue that universal accessibility comprised of at least
four dimensions including communication access (access to
information) and we could argue with confidence because
the WHO said so (World Health Organization, 2000, 2005)!
In reviewing the evidence around CA it soon became
obvious that issues were complex and wide ranging with
literature spread across many seemingly disparate fields.
Our starting point was in the aphasia literature, in particular
the work undertaken by researches and clinicians in the
United States (Chapey et al., 2001; Simmons-Mackie,
2001), Canada (Kagan, Black, Duchan, Simmons-Mackie,
& Square, 2001) and the United Kingdom (Byng, Farrelly,
Fitzgerald, Parr, & Ross, 2005; Byng, Pound, & Parr, 2000;
Parr, Byng, Gilpin, & Ireland, 1997) and at home in Australia
(Howe, Worrall, & Hickson, 2008; Rose, Worrall, & McKenna,
2003; Worrall, Rose, Howe, McKenna, & Hickson, 2007).
The work of these seminal authors work continues to inform
our practice and guide our decisions.
3. Collaborate with key people and look
for opportunities
A strategically important feature of the CACIG is that it is
multidisciplinary, drawing clinical and non-clinical
professionals from across the continuum of care. Members
come from areas including: ethnic services, quality and