DISABILITY CARE AUSTRALIA NATIONAL CONFERENCE - DAY 2: IN SHARPER FOCUS - CHILDREN
CATH HALBERT:
We are still waiting for some stragglers, but it is after 1.30, so I think we may need to get started. I'm
Val Johnson, I work for Noah's Ark here in Victoria. We are Victoria's largest provider of childhood
early intervention services.
And we have a panel here today who will be discussing a case study of a family who has recently
come to terms with the fact that their very young child has a disability.
I won't introduce the panel to you now, for the sake of time, but I will ask each of us speakers in turn
to introduce themselves.
Before we start, can I ask are there any hearing impaired people in the room because our
interpreters may be better utilised elsewhere if there aren't.
Thank you very much.
We are going to start with Stephanie Gotley who is a parent of two children with a disability and
Chief Executive of children with a disability Australia but I will let her tell you more about herself.
She is going to lead us in with a case study and then our panellists will respond.
STEPHANIE GOTLEY:
Thank you. Yes, I am very proudly a parent of children with disability. I have four kids ranging from
16 to eight and my 14-year-old and 12-year-old have disabilities.
That is part of the reason why I'm doing my job but not all of it. I'm also the executive officer of
Children With Disability Australia and for those of you who aren't familiar with our work, we are the
national peak body for children with disability aged 0 to 25. We have around 5,000 members and
essentially our role, most of them are families of children with disability. We are trying to increase
our membership young people with disability, so 18-25 and we have some organisational members
as well, associate members.
But our real reason for being, Lauren who will speak with you soon, she used to do my job before me
in a different carnation, is that we are determined and very passionate that the real experiences of
children and young people with disability inform government policy and service provision and reflect
that the real experience. So that is our core reason for being.
But today, I'm here to talk about early intervention or early childhood intervention. And we are
going to focus on that and I'm also a real - we have talked a lot about the philosophies around the
scheme and their core expectations but I'm also - the most dominant thing that I hear from families
when I meet with them is how is it going to work on the ground? What is it going to mean for me
with a child with a disability?
So I was really keen to present it is actually a case example of a family that I know well. Their child is
now a lot older now, but I was really keen to base it on a real scenario, a real experience and hear
how some of the good work that these folk have done on their practical design funds and Tim's
research links into the everyday experience of children with disability, children and young people
with disability.
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So there are many pathways to learning that your child has a disability. For some reason, there is a
definitive diagnosis at birth and for others it is an emerging picture. Some families cope by denying
that their child has a disability. And there is no right or wrong way to respond to having a child with a
disability. But there certainly is different ways, different circumstances, different abilities, different
impacts and different personalities to consider.
This means that there can't be a standard formula for early intervention for infants and children with
disability but in fact we need a model that accommodates diversity and difference. UNICEF recently
released their 2013 state of the world children's report on children with disabilities. If you haven't
had a look at this report, I would strongly urge you to do, because it is a maintenance report and it is
compelling reading and it reminds us all of what a lot of work we have got to do as a nation.
In the introduction, the executive director of UNICEF states that children do not accept unnecessary
limits, neither should we. So as we head into the new world of disability care with our very high
expectations, I think we have a truly unique opportunity to address and overcome some of these
unnecessary limits and for children with disability, effective early intervention is integral in this
journey.
Until now, early intervention in childhood has been provided in a confined, way restricted
considerably by constraints on service providers, costs, availability and the list goes on and on and
on.
So what changes do we envisage under DisabilityCare Australia? What will it mean for someone like
Ben? Ben's mum enjoyed a healthy, happy pregnancy. It was a little more tiring than her first
because she had Ben's two-year-old sister Isabella now. Ben was born at 38 weeks with all appearing
well. Within days of going home, Ben began what was to be his two year stint of crying endlessly day
in, day out. There was brief relief with his intermittent napping contingent on him being in his swing
but rarely did Ben sleep more than three or four hours at once during those four two years. Pretty
stressful for any mum - even for a mum whose day job was a midwife.
Initially the diagnosis was a relatively simple one – reflux – which saw some early contact with a
paediatrician. But by the time Ben was three months old and far from meeting the usual
developmental milestones, it was clear that the prognosis for Ben was much more complicated than
reflux. He hadn't smiled and he was crying and arching his back continuously.
Ben’s mum didn't consider things were atypical or start thinking about disability until after those first
lot of test results. Her little family, her husband, Isabella and Ben had just returned to Melbourne to
live and she was focussed on the usual young family coping, with a highly demanding baby, toddler
and a husband working long hours. When I was talking to mum, she just said she was just so
focussed and was think that she was coping really well just to get through the day, which she was. So
there was little time, you know, to think about well, what else is going on, I suppose?
His mum recalls her first dawning that Ben's development was unusual when she was reflecting that
she couldn't put Ben on the floor and do that normal kicking around, exploring that her other
daughter had loved to do. There was no glimmer of hope with reflux relief, so back mum and Ben
went to the paediatrician. It was then very apparent that Ben was fitting way outside the usual
developmental expectations and referral was quickly made to a neurologist. You know, mum
obviously started thinking things were not going the different course when the neurologist and her
background, particularly given her background.
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The initial brain ultrasound did not detect anything of note. The next step was an MRI. Dad got a call
early one evening at work, about 7 o'clock all by himself, great example of practice here, and was
informed over the phone of the results of the MRI. He was informed there was severe irregularities
noted on the MRI which indicated a substantial brain damage. Many thought dad was in denial when
he insisted on a second opinion from a neurologist but he held his ground. His reasoning was, we get
a second opinion on a car, so I'm going to certainly get a second opinion on my baby.
Ben's parents were subsequently informed that the MRI was completely normal for a three month
old baby. Ben's physical social and emotional development, however, continued to be significantly
delayed and unusual.
So the search for a diagnosis continued over the next 12 months with liver, skin, muscle biospies,
mitochondrial testing and retrospective viral testing, testing ad nauseam, anything you can think of I
think they had done, but it was very apparent that development was very unusual but the family
wanted to know what was the cause, what was going on.
The family, along this 12 month journey, were given a number of different diagnoses, all wrong.
They kept Googling them all. They kept thinking maybe this is an idea or whatever the latest
diagnosis was, they would have a look at. Then they stopped Googling and requested everyone else
stop Googling.
Ben's parents quickly realised that their baby boy didn't fit in any box and they needed to start their
own searching for answers and therapies. They also decided that whatever the outcome, they were
going to ensure that Ben had the same opportunities and experiences as Bella their daughter had
and as a family, they were not going to be defined or dictated by Ben's disability.
So they were starting to think, yep, he has got a disability, that is fairly apparent to all, but you know,
we are going to soldier on. Then they encountered the disability system as we all know it. Over to
you, Tim.
TIM MOORE:
Thank you. Yes, my name is Tim Moore. I'm a senior research fellow at the Centre for Community
Child Health which is based at the Murdoch Children's Research Institute at the Royal Children's
Hospital in Melbourne. I've had a long time involvement in early intervention services. My
background is as a psychologist and practitioner but now I'm in a position where my job is to try and
summarise everything there is to be known about young kids with young children and their families
and understand how that should play out in terms of policy and practice.
Easy!
In response to that potent story, one could start by talking about the systemic issues, you know, the
delays in receiving service and the limited choice of services and the clash that exists between what
referers think you are going to get and what you do get and differing practices among agencies and
so on. I'm going to set that stuff aside and focus on the evidence side of things. What does that tell
us about this situation?
Well, first of all, it tells us some stuff about what parents experience at that time which was
illustrated by that story. They are likely to be experiencing some distress, some confusion because
they are still trying to sort out what exactly is going on. They don't know the system. They don't
know what services exist and what choices there are, if any. They don't know what services provide.
They don't know what to expect when they go and deal with a service. They don't know what their
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role is. Are they to be the passive recipients of expert evidence or active participants as an equal
partner?
They are not necessarily sure what their needs are. If we asked each of you what your needs were
right at this time, you might not be able to state them very clearly. So we want to base services on
needs but helping families articulate them is one of the important tasks.
They lack the information about this newly discovered world they need to make fully informed
decisions and they may lack confidence in their own abilities to meet their child's needs. Not all of
those match that case because that is a family that has done some research and has got
competencies, is confident and so on. Nevertheless, the stuff that applies to meeting this new
system is still a challenge for them.
So, what do we know about the services themselves and the evidence? What is the evidence that
tells us what services are effective? What should they get? I will leave it to Lauren to comment upon
what they do get but what should they get? What is the evidence here?
Well, we can divide it into two parts. How services are delivered and what's delivered. So the
manner in which services are delivered turns out to be very important for the effectiveness of
services. Above all, effective services have to be relationship based. This mum has to form a
relationship with someone in a service that is going to be attuned to her needs, someone that she
can trust.
The service delivery has to be based upon a genuine partnership between parents and service
providers. Not one sided. Effective services need to be based upon the families’ most salient needs
and take account of family circumstances - not prescribed by professionals regardless of what the
families are most concerned about.
The families need to make the final decisions about what issues to work on and what strategies to
use. That will affect the effectiveness of them. It affects the extent to which they take up the
services and make use of them.
Services have to be flexible, adapting to changing family needs and circumstances and not
continuing to deliver the same thing and effective services need to acknowledge and build on
existing family strengths and resources.
Now, that package of quality factors can be covered by the rubric of a family centred practice, a
family centred care and it is associated with more effective service delivery. More effective support
to parents is delivered if you deliver it in those ways.
What about what you deliver? Well, we know that infants and children learn best through their
everyday experiences and interactions with familiar people in every day contacts. That is how all
children learn, including kids with disabilities and while early child intervention services can play an
important role in supporting families, they are not providers of a major learning environment, only
there a few hours if that a week. It’s what happens between visits that actually determines what kids
need.
So that implies that our job really needs to be about supporting families and other care givers who
do provide the environments that children spend their time in with the support that they need in
order to help their kids develop functional skills that enable them to participate in those
environments.
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And the evidence suggests that all families, to some extent or other, are capable of doing that with
the right kind of support. That support needs to build upon their strengths and resources and it
needs to build their confidence in being - in knowing the system, in knowing how to meet their
child's needs, in knowing what their own needs are and being able to act as advocates for their own
kids.
And then, of course, the interventions that are supplied by the professional who brings to the table
need to be evidence based. But it needs to be evidence based in response to, in the context of, the
circumstances that their families live in and their particular values, what is most important to them,
not imposed regardless of those things.
And, of course, support must also take account of family circumstances and increasingly include the
child's voice. Obviously with an infant, particularly an infant who has got communication difficulties,
then the parents are speaking for them. But increasingly, we are wanting to find ways of engaging
that child so that we can respond to the child's needs.
So that is very quickly what the evidence tells us. And there is one other comment that I will make
before handing over to Lauren and that is that one of the key things that DisabilityCare Australia is
aiming at is that in the long run, the person with the disability and their care givers have control over
the funding and are able to choose what services to use.
There is a question over whether that is something that we can fairly ask of somebody who’s in a
situation where they are brand-new to the system and being asked to make those kinds of choices.
Is that adding additional stress to an already stressed system? Is it instead something that we should
aim at as one of the goals of early intervention to help the person, help the parents and care givers
arrive at a situation where they are sure about their own needs, know enough about the system,
confident their ability to be equal partners with professionals and are ready to take over
responsibility for managing the funding?
Food for thought. I will leave it at that. Thank you.
LAUREN MATTHEWS:
I'm Lauren Matthews. I'm the executive officer of Early Childhood Intervention Australia, the
Victorian chapter. My background is, before Steph was in her role, I looked after the Australian
Association for Families of Children With a Disability and the Victorian Council of Social Service. So
I've had a bit of experience in working with both families and service providers.
So I'm going to talk to you from our members’ perspective, so I'm going to put on the hat of a service
provider and take you through the practical application of some of the evidence that Tim has spoken
to us about.
So Ben's family has come to our service, following their visit to DisabilityCare Australia to develop
their plan. In working with their planner, Ben's family decided that what would best suit their needs
and Ben's needs would be a trans-disciplinary approach to early childhood intervention. After
reading our materials and meeting with our staff, Ben's family decided that we were the early
childhood intervention service that they wanted to use. The money that Ben's family have received
for our service is a great starting point to deliver a holistic service that can meet the needs of Ben
and his family.
We see our role as an organisation to assist Ben's family to help Ben develop the skills and abilities
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to participate in and enjoy every day life, to understand the kinds of experiences which can assist
Ben's growth and development and what they can do to help, and how to enjoy Ben, his sister Bella
and being together as a family, because up until now, things have been pretty stressful and
confusing.
Our service works in a trans-disciplinary way using a key worker or family support coordinator type
of approach. What this means for Ben and his family is that they will be allocated a professional and
that will be a mutual process that meets their needs and will work with them on their journey
through early childhood intervention. As a team and in partnership with Ben's family, we decided
that Ben will have Joe as his key worker who is an early childhood intervention professional with the
professional background as an early childhood educator. Why did we choose Joe to be Ben's key
worker? Joe has a broad skill set and being an early childhood educator has a strong knowledge of
child development, which is something that Ben and his family are really finding hard to try to find a
diagnosis to support them through that journey of Ben's development. We thought Joe could best
help and understand and support Ben's development as he goes through early intervention.
As the key worker, Joe will provide a coordinated support to Ben and his family and will be their
primary contact point. Joe will work from a strength based family-centred perspective but enables
Ben's family to be in control of their lives. Joe's work with Ben and his family has a number of key
components. And this could be from accessing support from friends, families and professionals,
information advice that enables Ben and his family to navigate services, understand professional
terminology and access resources, opportunities to identify and address their needs in parenting a
child with a disability, to help support and develop skills in advocating for the needs of Ben and for
their family and support in service coordination.
Joe will also work within a trans-disciplinary team which means that she will work with other
professionals in her team, including an occupational therapist, a psychologist, a physiotherapist, and
a speech pathologist, and as a team, they will work together, often through Joe, to find the best
approaches to support Ben, his learning and development, and his family.
Joe will also undertake planning that takes into consideration child and family strengths and needs
when developing child and family goals in partnership with their family. And in our organisation, Joe
will be supported in her work through ongoing professional development, supervision and
collaboration within her team. The supports that are best for Ben and his family will be based on
their needs. Helping them to create the experiences and opportunities that are meaningful for them
and Ben based on their existing strengths and interest. Joe will aim to help Ben's mum and dad to be
confident, aware and strong and assist them in their role as Ben's first and primary teacher in life.
One important component of Joe's work will be that she will work in the places that Ben and his
family are spending their time. Children learn most in everyday situations with familiar people. So
Joe will encourage and support Ben's everyday learning and by naturally building on opportunities
for learning and development that are already being provided at home and through services such as
childcare.
The best opportunities for Ben won't come through hours of one on one therapy in isolation, but
rather from being a natural part of what Ben's family do every day - such as building activities and
strategies into daily family routines that give Ben time to practise skills.
The goal of our service is to fit in with Ben's family's everyday life so Joe will spend time with the
family in their home, in childcare or in moments where Ben and his family might need some extra
support. Such as during meal times, sleeping or even at the supermarket. Joe might also talk to the
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maternal and child health nurse, his GP and paediatrician, or even the childcare centre that Ben
attends some mornings to help them find ways to best support Ben in their service.
Joe will be able to work with Ben's family to identify practical strategies and suggestions and provide
them with the skills to implement them. She will also link them to other services, setting goals for
Ben in partnership with them and establishing and refining their routines.
Joe is also a person to talk to and a constant voice in the confusing path of appointments,
challenging experiences and sometimes moments of anger, frustration and sadness that Ben's family
might be experiencing. Joe might also connect Ben's mum and dad with a counsellor to talk about
their challenges or find a play group that would be fun for them to go to as a family, or a group with
other families of children with a disability, like a MyTime group or a time limited centre based group
that focuses on a particular skill that they are developing for Ben or for his mum and dad like a
Hanen program. Or as Isabella gets older, Joe might refer her to a sibling group so she can meet
other people with other experiences as her and her brother.
Joe will also work with Ben's family to identify what therapies, equipment and supports might be
helpful to assist Ben to learn and develop. If Joe isn't sure of what strategies will best meet their
needs, Joe will then communicate Ben's needs with his family, to others in her team or to other
organisations. And provide advice and work with Ben's family.
Joe will show the family - will support their family and give them strategies on how to do things, like
use specialist equipment or how to modify routines to meet needs and focus on development. By
having Joe as their central contact person or key worker, it will mean that Ben's mum and dad won't
have to be constantly retelling their story to a multitude of professionals or services. Joe will be able
to support them and assist them in their journey of implementing their plan that they developed
with DisabilityCare Australia.
I now pass on to Alyse.
ALYSE DAVIS:
My name’s Alyse Davis. I'm the researcher from Melbourne University. And what I can talk about is
based on the research projects that we have done talking to parents. So I can talk about what
parents have said they want from health professionals, but it really aligns very well with both what
Tim and Lauren have said.
So I think Ben's family needs someone who understands the disability system and services and
services beyond health and disability as well, so has that holistic approach, is patient, honest and
compassionate, can work in partnership with the family to achieve realistic goals; can think outside
the box and help families come up with solutions; assist with decision making and have an
understanding of evidence-based services and practice; can help with realistic long-term planning
which can obviously be really overwhelming for parents; can empower parents to advocate for their
children but also support them to do that through that community capacity building, so actually
taking on some of that role themselves. And also I think the services need to support not only
parents’ well-being but also siblings’ well-being as well.
I think I will pass on to Sophie.
SOPHIE LEFTMAN:
Hi everyone, I'm Sophie Leftmann. I’m currently the lecturer in children's physiotherapy and clinical
educator at the University of South Australia.
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Look, really listening to Ben's story, I have to agree with everything my fellow panellists have said
and especially what Tim said. I think when we did our project for those of you that heard in the
previous session, we wanted to think about how can we get people, such as Ben's parents, starting
to conceptualise what they want for Ben, share that with us as the clinicians that might be providing
a service so that we are all working towards the same goals and I think that's where sometimes
terms like ‘family-centred care’ need to be fleshed out just that little bit further so that it is really everyone is actually working towards what the child actually needs.
So it is really important that we have a correct and timely conversation with Ben's family, with
whoever they might choose to provide, say, allied health services, the local area coordinator and
whatever role they might have to figure out what is it that Ben needs to lead a life that is
authentically his own and by that I mean how can we support Ben to be an 18-month-old child that's
going to do what other 18-month-old children would like to do.
So I would see very strongly that Ben's role is to be a brother, it is to be a son, and it is to play and so
how are we going to support him with whatever therapies, for instance, in order to achieve those
things?
So sometimes there is attention, I guess, between how services are delivered and how health
professionals - I am using the term ‘health professionals’ because I'm a physiotherapist, it is my
frame of reference - how we might actually want to deliver the services but they can be, I guess,
stifled by service delivery models, so I think it is important to bear in mind that families accessing
services need to tell service providers how they want services delivered.
Until those points are actually consistently articulated, there is not going to be an impetus for
services to change. And one of the things in our project was how is the child going to be challenged
and is there going to be innovation behind the way services are delivered? Some of the - I've worked
with a lot of children, like Ben, and some of the best ways that they have learned are through what I
would like to think of as authentic learning experiences.
So not just working on calf strength, inner range quads or things like that, but actually becoming a
ballet dancer in the local production which happens to have the result of lower limb strengthening
that we are all working towards. So I think we need to start encouraging our service providers with
the onset of DisabilityCare Australia to see how can we be encouraging in this early intervention
model our children to live authentic lives, how can 24th be challenged, how can they be delivered in
a timely way, so for anyone that is a health professional working with school-aged children knows
that after school appointments are gold and, you know, why aren't more services delivering afterschool or weekend appointments that fit with what those children want so that they don't have to
be pulled out of school in order to receive these kinds of services.
So I think there is a lot of these concepts, they are not new, I certainly haven't come up with them,
but it is timely to start to get Ben's family and other families like Ben's to say this to the people that
are, I guess, allocating the services. And help have that dialogue with them.
VAL JOHNSON:
You would all join me in thanking the panel and then we will open the questions. Any question of
any of the panel members?
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QUESTION FROM THE FLOOR:
I think the question is for anybody who would like to answer but I suppose I'm a little bit - my
question is more about a practical thing in terms of whose going to be helping the families
understand what trans-discipline means versus individual therapy? Because, I mean, how are they
going to understand service models? Who is going to be helping them? Because if they choose a
trans-disciplinary provider, they have already made that decision. But I'm not sure if they have made
it very well. Does it make sense?
SPEAKER:
We have been working really closely with DisabilityCare Australia in developing both the pricing
structure and also in developing the guidelines and information that's going to be supporting the
planners in the way that they are working so that they are able to support families in understanding
what the service system looks like and what best - different interpretations of best practice might be
because also DisabilityCare Australia is very committed to funding best practice intervention that's
based on evidence. So we hope that that will be informing - the planners and I think we have also
got a really big challenge in the way that we work with paediatricians and other medical
professionals as well because we often hear, you know, a family goes to a paediatrician and then
they present a service saying "Well, I need five hours of speech therapy a week because that's what
the paediatrician told me", it is going to be the best intervention.
So how do we balance that based on providing that more holistic service, focussing on learning and
development too?
SPEAKER:
So when you say planners, are you meaning the area coordinator?
SPEAKER:
There are planners and local area coordinators.
VAL JOHNSON:
There was a question down here.
SPEAKER:
The difference between planners and local area coordinators? So the perspective I was talking from
was the service that that family has written in their plan and that they have purchased. So they
would purchase that service from an organisation.
KATE STROHM:
Kate Strohm from Siblings Australia. It was encouraged to see the mention of siblings during the
presentation and I guess for me I've been running workshops for parents and providers around
Australia and overseas for many years and parents are crying out for services for siblings but they
are just not there and in the same way that parents feel distressed, so often do siblings and we know
that they have higher rates of mental health problems as do parent carers.
Part of the difficulty is that siblings aren't in policy anywhere. We can't get resources to develop best
practice. There is a lot of people out there doing bits and pieces but again there is no best practice.
And so I guess my question is how can we make siblings part of the core approach of people?
Certainly when I've mentioned over the last couple of days to people about siblings, everybody says
to me well, not everybody, but several people have said, “Oh yes, well of course they will take over
the care one day.” And certainly they will be there longer than anybody, longer than any of the
speech pathologists, any of the parents anywhere, they will be there longer, but to view them in
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those terms that, yes, they will take over the care rather than nurturing that relationship from a
young age and trying to say, “Well yes, these children have needs as well,” I think is really disturbing
and so I guess I would just like a comment from you about how we can get siblings into that policy
and program area and get support for a peak body like Siblings Australia to make sure that best
practise can happen.
TIM MOORE:
I think the issue here is that the best practice would indicate that in supporting a family, we are not
focussing exclusively on the child who has got a disability because the whole family has to function
well if the child with a disability is to benefit. So we have to consider the needs of parents as a
couple, the needs of the family as a whole and the needs of siblings and we need to therefore find
ways of helping the family meet the needs of the child with a disability that do not drain all the
family's resources into that single effort to the exclusion of considering other people.
So it is not just the siblings, it is also other care-givers, in fact, you include grandparents and things
like that in that kind of thing. But siblings are obviously affected by it and that assumption that they
will be the caregiver later on is seriously scary. It is not one that we want to be encouraging.
SPEAKER:
Can I just say one thing? It kind of seems a strange thing to say in this forum but I suppose speaking
and I know there's a lot of variability in terms of different experiences, but disability services and
supports as a young family with a child with a disability isn't the centre of your life. You want it to
compliment your life and I think that we need to make this DisabilityCare for early childhood and
early intervention and for children with disability a scheme which really facilitates the focus, or
changes the focus I think, so we see Ben as Ben, you know, I see my kids as they're my boys first and
disability is just part of who they are and so however we structure the scheme and a lot of it is fairly
bureaucratic at the moment and we are certainly heading in to a new world, we need to make it so
the service system is complimentary, you know, it is not - I mean, I feel strange saying that in this
room but it is not - it is an essential part of your life and early intervention is crucial but it is not
central to everything and it shouldn't be. So whatever - yeah, I just wanted to say that.
(Applause)
ANNE:
Hi, I'm Anne. I'm a mother of a young child who has just recently been diagnosed with autism. She is
at the severe end of the scale and my experience, having - my background is as a nurse and in
research so I have spent the last year trying to find out everything I can about autism and what it
means and the best therapies that are possible to help her come out of her shell and interact with
the community.
My concern with some of the things that have been said has been along the lines of what we need to
do is teach the parents how to provide the physiotherapy or how to provide the occupational
therapy or, in my daughter's case, behavioural therapy.
In addition to the stress of what's happened with my daughter, there are other family issues going
on and it's going to take me some time to learn about what behavioural therapy is and what it
means and I'm certainly not going to be adequately able to take over that role as a provider of the
service to my daughter without a bit of time and effort and some experience with people who
already have experience.
In the current system, my understanding is that if you have a diagnosis of autism, it doesn't matter
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whether you are at the mild end or the high functioning end or the severe end, you get the same
service. We were offered the Hanen Program right at the very beginning. We thought that was a
wonderful idea but we found it very stressful and were unable to manage it on our own. So we have
organised for a private service to come in and help us through that.
So when you are talking about teaching the family to take on these roles, as an early intervention
service, my concern is is there any understanding that there are different levels of need with
different diagnoses?
SPEAKER:
Of course, and apologies if what I was talking about came across as parents being the sole provider
of early intervention. It’s really about having that suite of services around families and I think the
concept of having that central contact point is really helping parents and care givers and
communities navigate that system of services and supports as well, so that you have that person
that's on that journey with you. I think that is that is incredibly important and there are going to be
things that people - you do need professional interventions for and that might be continuing on with
the suite of appointments or having professionals come in and work with the childcare centre, for
example, so they can have the best possible environment to cater for your child's needs and the
needs of other classmates as well. So I think it is about having those holistic supports and having
services and planners that are aware that there is a range of things that are available for families and
that each part plays a different role and has a different component in that plan. So I think that, yeah,
it is not just having one service, it is a range of services and helping everyone build up those skills as
well so that the everyday just becomes a little bit less stressful.
SPEAKER:
If I could just add to that as well. I think that's one of the things that - I'm going to sort of not be
clinician right now and I'm going to think more about what I'd like to teach our students in the
various allied health fields - is about being responsive to what our families ask of us. So if our
families say, look, I really want you to show me how to do these particular activities, do it for me,
how can I as a clinician or a service provider tailor that to suit your needs? I've got some of the most
fantastically capable families. I've got some families that would like me to be doing the hands-on
work. And so I need to be able to adapt, you know, and teach my students how to adapt to that as
well. Because ultimately I and our future clinicians are there for you. That is why we do the work
that we do, so I would like to think that this DisabilityCare approach can be sensitive to exactly the
amount of support that you would like to have or not. And that is driven by you.
VAL JOHNSON:
We are starting to run over time, so a very quick comment, Tim.
TIM MOORE:
Well, we are not in the business of trying to get parents to do physiotherapy or speech therapy or
any kind of therapy. That is the key point. The issue is to find ways in which it might be possible to
embed in to every day routines and interactions, behaviours that will promote the child's ability to
be mobile or communicate or to look after themselves and so on. So we are not - and this is
precisely to not add to the parents' burden. We are trying to embed it in to reduce the parents'
burden but it is based upon the key idea that you are providing an early intervention service,
whether you want to or not, because you are the people who are with the child all the time and that
is how kids learn.
The other important thing to note is the critical importance of the interaction between the key
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people in the child's life and the child – that all development springs from promoting the equality
and the positive nature of that interaction and that has to occur on a daily, hourly basis,
continuously for the child to develop. It can't be done by a therapist and it can't be done by
transplanting therapy techniques into a home environment. It is done through the relationships. So
part of our job has to be to promote the capacity of parents and other care givers, everyone else
who has contact with the child, to do that all important job.
VAL JOHNSON:
OK. Would you join me in thanking our panel? And thank you all for your participation.
(Applause)
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