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.