In this piece Christine Regan talks about the little steps that start the big journeys...
I want to share some of my own recent experiences when the
intention of being person-centred did not match what happened in real
life. The people involved did not
recognise the contradictions and were certainly embarrassed when they did. The service-centred
system is deeply entrenched in our psyche. We need to dig it up and compost it.
I have been lucky enough to be travelling about this year
doing lots of talking about people with disability and the opportunities that
the future could hold. I talk about people with disability having choice and
making decisions, and how person-centred approaches could benefit people and
families, community and society, services and government.
I mostly do this as part of my paid role and I am sometimes
given a speakers gift for my presentations. In the past it has been a bottle of
wine. This delighted my partner because I am prone to migraine and a major
migraine trigger for many years has been grapes and grape products. Therefore
it is his spousal duty to drink the very nice wine when I receive it; the least
he can do really.
Over the years, I have also received engraved goblets, a tea
set and flowers all cherished. (Note to Tax Office: all duly declared at work
for pecuniary interests).
But lately I have received two rather lovely pieces of
original artwork done by people with intellectual disability. This delighted
me, firstly because of the thoughtfulness of the gift and secondly because the
work was original and attractive, the quality was very high and the
presentation was impressive. On each occasion, I was profoundly moved by the
gift. Worth more than money. I quickly turned over the work to see the name of
the artist, knowing I would not recognise who they were but wanting to see their
name and appreciate their art in any case.
Each time the label said the name of the group or disability
service where the artwork was done, not the name of the artist. I was very
disappointed. Each gift was for a speech on person-centred approaches. I asked
if I could find out the name of the artist and was told probably not.
I did not want to insult or embarrass my hosts on either
occasion but found the contradiction very telling. These were forward- thinking
organisations that wanted me to challenge their thinking and staff in a
presentation that brought stories and new ways to conceive of people with
intellectual disability as experts in their own lives towards inclusion and
participation.
What happened here in the labelling of the original artwork
was the recognition of the service, not the celebration of the artists, as
would be customary outside the disability sphere, for regular artists in
ordinary life.
Another occasion recently occurred in a deep conversation
with the CEO of a disability service organisation. This CEO is a person who genuinely wants to
move their organisation towards a truly person centred way of working, to
extend this to the skills of all staff.
The CEO was describing the meetings they have been holding
for people with intellectual disability and families in their services. Hats
off to the organisation for holding these seminars. The CEO was frustrated and anxious that the
people and families, after considerable explanation, did not yet grasp what
individualised approaches and person-centred planning was all about. In this candid exchange it became clear to
me that, with all good intentions, the CEO had been trying to onvey
individualised approaches and person-centred planning to people and families
from the perspective of the services and organisation. No wonder the people did
not understand. It is simply not
possible to explain individualised
approaches and person-centred planning from any viewpoint other than that of a
person with disability. That is the point. It is person centred, and it should
be explained as such.
During our discussion, the savvy CEO immediately saw the
contradiction and started to plan how to re-design the seminars from scratch to
involve people with intellectual disability in exploring person-centred
approaches.
Nobody gets this stuff right all the time, we are all human.
There is, however, a fundamental shift going on that involves people with
disability, regardless of their support needs, being recognised for their
goals, preferences, talents, attributes, their personalities. Some people may
need communication support, assistance with decisions, time to process, someone
alongside them and so on. The biggest change is that the person with disability
is the primary consideration, at the centre, no longer merely ‘the end point of
service deliver system’ as I was once told many years ago. But this requires
very big thinking down to very little details, if we want to get it right.
In a three hour presentation this year to people with
disability and families, I was confronted with a very hostile customer, the
father of an adult woman with intellectual disability with very high support
needs. This was part of a series of seminars
over several days in regional NSW to talk about individualised approaches and
person-centred planning and what is happening at national and state
levels. The seminar had about 60 people
attending.
This father sat in the front
row with his arms crossed and heckled me on several of my introductory points.
He was genuinely and desperately worried for his daughter, but his anxiety
overflowed on that day with me as a target.
When next he spoke I asked him about his daughter, what she would like,
and he dismissed me but then quietened.
Before the meeting adjourned for morning tea, I told the
story of the course that my partner and I did last year on person-centred
planning. This was where I painfully learned that you DO NOT want your mother
(i.e. me!) to do your person-centred plan. I painfully learned how I needed to
find a way to give my daughter Erin her own voice, separate from me, so she can
design her own goals and preferences. This was such a good lesson for me as a
mother, painful and exciting, and we have enabled Erin to do this.
During morning tea, this desperate father came up to me and
asked me for a quiet word. I must admit,
experience has taught me to expect the worst, to smile and try to be gracious.
But this father had a tear in his eye. He told me that he had just realised
that he had always made the decisions for his daughter. He had never actually
asked his adult daughter what it was that she wanted. After this seminar, he was going straight
home to ask her what she wanted in life and begin to talk with her about
it. For them the story begins.
The little steps start the big journeys. Simply putting the
artist’s name on the canvas. Simply starting from the person’s viewpoint first.
Asking what someone wants in decisions that affect them. These are fundamental.
They are still new for many people with disability. Big thinking in little
ways. We need to be mindful.
Christine Regan has been a Senior Policy Officer at Council of
Social Service NSW (NCOSS) since 1998. Since June 2011, she has convened the
NSW Disability Network Forum, a consultative and issues forum for
non-government non-industry peak disability representative, advocacy and information
organisations.
Christine also convenes the Assistive Technology Community
Alliance NSW working to improve the provision of equipment to people with
disability in NSW and is a member of the Ministerial Reference Group on Person Centred
Approaches as well as a number of community sector committees and collaborative
groups. In 2012, Christine completed a three-year term as a Board member of the
NSW Anti-Discrimination Board. When not at NCOSS, Christine is Vice Chair of
the NSW Council for Intellectual Disability as well as the Vice President and
NSW delegate on the National Council on Intellectual Disability. In the Nepean
area, Christine is Chairperson of Dare to Care, a local disability activist
group.
Christine is the proud mother of three adult children, a
daughter and two sons. Her daughter Erin is 36 years old, has Down syndrome and
lives at home with Christine and her partner.
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