Winter 2013 In Touch - Muscular Dystrophy Association of New ...

From the Chief Executive
MDA news
Greetings and kia ora koutou
MDA Chief Executive,
Chris Higgins
The Annual General Meeting (AGM) of an incorporated society deserves to
be regarded as a significant event. Typically in New Zealand incorporated
societies are run throughout the year by governing boards or executive
committees on behalf of and as elected by the societies’ members. The AGM
provides an annual opportunity for Societies’ members themselves to directly
influence policy and decision making. It is also an opportunity for them to
hold their governing boards and executive committees, together with their
executive staff, accountable for their stewardship of resources, past actions
and future intentions.
The Muscular Dystrophy Association (MDA)’s
AGM on 19th April was therefore an important
event. It was an opportunity for me as Chief
Executive and Helen Melrose as National
Council Chairperson to be accountable to the
MDA’s members through the presentation of
our reports, and for the National Council to
demonstrate its stewardship of the Association’s
resources through the presentation of
its audited annual accounts. These three
documents collectively comprise the MDA’s
2012 Annual Report which is available as a hard
copy on request or through the MDA’s website.
A big thank you therefore to all members who
came along to the AGM, read and listened to
the reports and asked questions.
The AGM also confirmed those elected
to serve as office holders and I wish to
congratulate Lindsay McGregor, Heather
Browning, Sophie Tamati, Gill Goodwin and
Derek Woodward on their appointments
and reappointments. Congratulations also to
Raewyn Hodgson, Vivienne Palmer, Liz Mills
and Trevor Jenkin who have been appointed by
their Branch executive committees as National
Council Branch representatives. I look forward
to working with you all, together with other
members Stacey Christie, Roger Loveless and
Andrea McMillan.
In his first In Touch column as Chairperson
Lindsay has commented on the importance of
the MDA’s fieldworker service and that it should
be funded by government as a core service,
rather than by the MDA. The MDA’s equivalent
UK organisation, the Muscular Dystrophy
Campaign (MDC), has been successful in having
its MDC funded fieldwork service funded by the
UK health service, and we hope to emulate this
here in New Zealand.
However it is likely to be very challenging
in the current fiscally tight environment where
the government is reluctant to spend money
on new initiatives, and where any discretionary
funds tagged for disability support services are
being allocated to the Ministry of Health’s new
model for supporting people with disabilities.
This notably includes the development of
“local area coordination” (LAC) services
which are being piloted in the Bay of Plenty.
Furthermore, the government funding that we
currently receive to support the provision of
information services appears to be regarded as
“discretionary” and is therefore at risk.
The proposed LAC service bears a
resemblance to the MDA’s fieldworker services
in that it is intended to:
• promote positive values towards, and
expectations of, disabled people, and focus on
the question “what’s a good life for you?”;
• help disabled people and their
families and whānau to explore how to live a
good life through offering general information
and someone to talk to about living with a
disability;
• provide access to tailored information
and may facilitate access to small amounts of
funding to address immediate issues;
• help disabled people to build a
community of support through, for example,
making connections with natural supports and
the local community; and
• support communities to be inclusive
and help people to access government services
(including specialised disability supports)
However, what the LAC service will not be
able to do is provide specialist knowledge of
neuromuscular conditions either to people living
with these conditions or their health and other
support professionals. We believe that this is
crucial to ensuring that MDA members and
others with a condition can “live a good life” and
that its absence from the LAC model means that
it is fundamentally flawed. We further believe
that funds allocated to support LAC would be
used much more effectively if they were instead
allocated to the MDA’s (and other disability
support organisations’) fieldwork services, which
already have a proven track record in providing
LAC type services. In other words why reinvent
the wheel?
Our challenge is to convince the health
bosses and policy makers, together with
those evaluating the Bay of Plenty pilot, of the
merits of our case. We intend to make this a
priority over the next few months. Any MDA
members or readers who have comments as
to how we might get maximum traction with
this important issue are welcome to contact
me. A more detailed paper on this issue was
considered by the National Council at its
February 2013 meeting and is available to MDA
members on request or by visiting the members
only section of the MDA website.
E noho ra
Chris Higgins
Chief Executive
in touch // Winter 2013 // PAGE 12