voice
Finding the Right Service
Is this the right
service for me?
by Robin Treloar
The National Disability Insurance Scheme
(NDIS) opens up a world of possibilities
to people living with a disability and those
who care for them. If we as a society get
it right, no one with a disability should be
without the supports that are ‘reasonable
and necessary’ to a good quality of life.
But the change to the NDIS does carry
some challenges, especially for families of
younger children.This article is addressed
to these families.
For the early childhood years, the switch to the NDIS
will not necessarily result in a net increase in the funds
available for your child, however there will be more
choices as providers set up shop or expand across
regions. Once, you may have just accepted what your
local early childhood intervention service offered you
but now you have all sorts of options to explore. Even
the not-for-profit organisations must compete for your
business as, without government funding, they are on
the same footing as the private practice down the road.
Is this an exciting and much-needed opportunity to find
the service that’s best for you or is it daunting and a
new source of stress as you try to ‘get it right’?
Some goals in an NDIS plan may not be best met by a
specialist service. A childcare centre, a local playgroup
or a soccer club may be your choice instead. In this
article however, I will concentrate on the disability
specific services that provide therapy and educational
programs. To help make this clear, I will mostly use
the term ‘therapist’ to talk about people working with
your child.
When you develop your first plan under the NDIS, you
will be assisted to find the registered service providers
in your area and talk with them about how they can
help make your plan a reality. Remember that your
first decision is not binding – you can take your plan
elsewhere if you are not satisfied with the service you
receive. You have ongoing choice and control.
For the rest of this article we will be looking at the
situation of the family who has chosen a service
provider and has been receiving the service for some
time. Let’s say that you have been going along to Main
Street Early Childhood Intervention1 for several months
but something has caused you to pause and evaluate.
Perhaps the last few sessions have left you less than
happy. Perhaps your therapist has left, and the new
person seems less experienced. Or maybe your friends
all seem to be getting more sessions for their money
than you do. You might be asking yourself,
“Am I getting the best value out of my package?”
“Is this the best service I can buy with the
funds I have?”
“Should my child be making faster progress than this?”
“Would she learn more if I went to the Side Street
service down the road?”
“Or should I find some extra therapies for her to do?”
Value for money
The responsibility of making the best possible use of
available funds can weigh heavily. It is not always easy
to decide what ‘value’ means in this context. Here
are three statements about value and some qualifying
comments.
“Value for money means Amy is keeping up with Jack”
Jack and Amy are both 15 months old but Jack is walking
and Amy is just pulling herself to stand. Does Jack have
a better physiotherapist? Not necessarily – he has
good muscle tone and is physically adventurous so he
may have walked at 15 months without any specialist
assistance. For Amy however, pulling to stand may
be a great achievement resulting from an effective
partnership with her physiotherapist. Comparing your
child’s progress to others is of little value in judging
service quality – children differ so widely in their
strengths, abilities and personalities.
“Value for money means getting the most change in
the shortest amount of time”
Progress can be uneven for even the youngest children.
You may see lots of changes over a few months then
less as your child consolidates and practises new
skills. A complex web of factors including health and
the competing pressures in your life can also affect
progress. It may be a wise decision to take things slowly
for a while to reduce stress on your child or family –
your child’s progress may benefit in the long run.
A good service will respect this and work in with what’s
best for you.
1 As far as I know, there is no Early Childhood Intervention service
of this name in Australia.
Voice November 2016 | The Journal of Down Syndrome Australia 5
voice
Finding the Right Service
“Value for money means getting the maximum hours
for our available dollars.”
For the same number of dollars, Amy’s family may
receive two hours of therapy per week, and Jack’s
family may receive three. Amy’s service may be making
a higher profit than Jack’s or it may pay higher wages
and have more overheads. A higher wages bill can
translate to a more experienced and stable workforce.
‘Overheads’ can include staff training and supervision
ensuring that recent graduates are mentored and older
therapists are kept up to date. For Amy, less may equal
more because the quality of her service is better.
This sense of being central and instrumental applies
even if your therapist visits your child at childcare or
school and doesn’t see you regularly. There is a system
in place to make sure that you are fully informed and
central to any decision-making.
2. Your goals are respected with a clear
approach to reaching them
At the outset, a therapist might talk to you about your
NDIS goals with the best of intentions, but then provide
the same service they always do. This story about twoyear-old Farouk and his mother, Jamila, illustrates this.
Value for money in early childhood intervention is all
about good fit; what works for one family may not work
for another. What matters is that you are building a
strong partnership with those who are working with
you. At all times, you and your service provider are
clear about where you are heading and how you are
getting there – and this includes those times when there
seems to be little progress or your attention needs to
be on other aspects of your life.
Now that Farouk was walking, Jamila’s top
priority for him was to learn to talk. She took
him along to see Caroline, a Speech Pathologist
at Main Street Early Childhood Intervention,
and signed up for ten weekly sessions. These
took place in the Main Street clinic, with Jamila
present and watching. Jamila felt positive to
begin with and enjoyed watching how skillfully
Caroline got Farouk’s attention. But after six
or seven sessions she was seeing things very
differently. “Caroline’s just playing with Farouk,”
she told her partner. “She’s showing him how to
sign but our Physio showed us that months ago.
Farouk’s not learning any words. I don’t know
where this is heading.” But Jamila said nothing,
and Caroline continued, thinking that Jamila was
happy with her approach. After the ten sessions
were up, Jamila decided not to renew the
service agreement. Caroline was disappointed,
because she felt there had been lots of progress
and things were really starting to move along.
If value for money is so subjective, what other
frameworks are useful for deciding whether your
service is working for you? These five criteria
may assist.
1. Your role as the greatest stakeholder (by far)
is truly valued
When early childhood intervention is aligned with best
practice, you are front-and-centre of the process from
the outset; your priorities are the starting point. Your
knowledge of your child helps the therapist build her
own understanding which integrates with her broader,
evidence-based knowledge. When things are working
well, you will feel that you are learning about your child
all the time, and so is your therapist. However much
your therapist contributes, it is always clear to you what
your own role has been in such breakthroughs.
When Sacha was born I thought, “Oh, I don’t
know how to parent this baby. How will I feed
her? How will we communicate? How will all
five of us be happy together? But I found all of
this worked out fine. When we started Early
Intervention, I felt less confident to start with.
I thought, “Now I am handing her over to the
experts. They will tell me what to do with her.
Our time being a normal family is over.” But it
wasn’t like that. They always deferred to us as
the parents. The physio didn’t even handle Sacha
unless she needed to show me something or try
something out. She got the other kids involved
as well. The team got to know us gradually and I
think they now understand what we’re like as a
family. They work in with our routines and they
help us to see how much Sacha gains from all
our cheerful chaos.
6
Without planning, there was a mismatch of
understandings and expectations. Caroline may have
thought, “I know what to do here, I’ve worked with lots
of children like Farouk, I can get straight into therapy to
make the most of our ten sessions.” But because there
was no shared process for planning how Caroline’s
sessions would lead to talking, and what Jamila’s role
would be, the family was not engaged and less was
achieved than may have been.
The goal of ‘talking’ may take many months – or even
years – for Farouk to fully achieve. There is absolutely
nothing wrong with a long-term goal like this but it
may be more useful to think of it as a vision of how
the future will be. A plan will include the in-between
steps to talking that are more finely tuned, precise
and achievable.
However keen you may be to get started with therapy,
a good practitioner will not cut corners on planning or
regard it as something optional. She will work with you
to make sure you have a clear, practical approach that is
relevant to your longer-term goal or vision.
Voice November 2016 | The Journal of Down Syndrome Australia
voice
Finding the Right Service
This way, you will always understand the purpose of
what is happening and the part that you can play. As
time goes on you will reflect together: are we on track
towards our goals? Is this still the most effective way to
get there? Is there anything we could add or leave aside?
Questions such as these come naturally in a productive
working relationship.
Some thoughts about planning…
• A plan is more than a list of goals.
• A plan is a process for making your goals a reality.
It needs to be a dynamic process that changes as you
make progress, and as circumstances change.
Here are some questions to ask about your
service providers:
• Therapy is not a goal in itself – it is a means to
an end.
• First of all, do they think about your everyday life at
all? If there is no attempt to understand what life is
like for you, or the attempt feels tokenistic, be wary.
• The best plans embed learning throughout the day
as a natural part of life.
3. Your way of life is understood and respected
by the therapists
We have seen that shared planning is important to solid
partnerships between families and service providers.
We have said that plans need to focus on achievable
steps but they also need to be realistic. This is
illustrated by the story of Angela, a client of Main Street
Children’s Services.
We went to Main Street and showed them
our NDIS plan. Robbie is going to school next
year so our goal was for him to independently
manage his clothes, shoes and lunchbox. Our
OT, Janet, told us these were great goals but
Robbie needed better fine motor skills before
he could do these things. She started him on a
program where he sat at a table drawing circles
and putting pegs in holes; that sort of thing. She
told us to practise this at home for ten minutes,
twice a day. But Robbie wouldn’t cooperate
with us – he hates this kind of activity. He is fine
in sessions with Janet, but at home he wouldn’t
have a bar of it. And anyway – how was this
going to help him with his clothes and his lunch
box? We didn’t have time to chase him around
and cajole him into cooperating. His three
brothers were all trying to do their homework
and they said, “Mum, can’t Robbie watch TV or
something?” I want to tell Janet how things are
for us, but I’m a bit embarrassed by how little
we have done.”
Angela, mother of Robbie, aged five
If we asked Janet, she would probably say that her
fine motor program was designed to lead gradually
to functional skills like dressing. She would add that
everyday practice could make a huge difference
for Robbie.
But from Angela’s point of view, the program offers no
clear pathway to their chosen goal and takes no account
of Robbie’s preferences or the everyday life for Angela
and her family. Rather than helping, Janet’s expectations
are causing frustration and stress. There is also a
wasted opportunity here because the routines of an
ordinary day, and play with his brothers, could provide
so many ways to help Robbie’s fine motor skills. It really
matters how the people working with you approach the
enormous privilege of entering into your home, family
and community and fit in with how you live your life.
• Do they make assumptions about what your life is like?
For example, a therapist may make certain suggestions
because she takes for granted that your partner is
supportive; you have plenty of play space; you have
child-sized furniture; your child has her own room;
you enjoy playing on the floor or you have half an hour
free twice a day. All of these things might be true, or
none of them.
• Do they make judgements? Particularly if your service
is home-based, you should feel free to be yourself
when your therapist is around. A family-centred
therapist will be happy to ‘take you as she finds you’
and you should be able to talk frankly about everyday
life. Every family is entitled to feel that their strengths
are recognised and their challenges are acknowledged
supportively. Of course, your religious beliefs and
cultural practices should also be respected.
It is worth thinking about some of the things that a
therapist might need to understand about your family.
These might include:
• what you and your extended family believes about
parenting and possibly also disability,
• the way your days and weeks are organised,
• who spends time with your child and when,
• your other children’s needs, in terms of time
and attention,
• activities you enjoy doing with your child that you’d
like to do more of,
• things that are stressful for you,
• the challenges you feel ready to face, and those that
you need to leave alone for now.
Any worker will need time to get to know you, and will
get things wrong sometimes, but what matters is that
she is open to learning from you, and your partnership
is growing stronger over time.
Voice November 2016 | The Journal of Down Syndrome Australia
7
voice
Finding the Right Service
4. The process gets you actively involved
The service you work with now will only be part of
your life for a short time, in the greater scale of
things. A good program will leave you with skills and
knowledge to take into the next phase. You are most
likely to learn these useful skills if you are an active
participant in everything that happens – planning;
trying new strategies; practising and evaluating. When
problems arise, they are solved through a dialogue in
which you and your therapist put ideas on the table in a
spirit of trust and cooperation.
During sessions, your therapist acts as your coach.
She knows that it’s your interactions with your child
that matter most, not hers. In a coaching approach, the
therapist sits slightly to the side and watches, giving
positive feedback and ideas. During breaks in activities,
the two of you jointly evaluate how things are going.
This is a great way to make sure you have confidence in
your own way of doing things – confidence that you can
take into all aspects of your life.
5. Your Early Childhood Intervention program is
just one part of your life
• Do I feel as if my therapist likes my child and enjoys
being with her? Does she like my other children?
• Am I building a better relationship with this therapist
week by week?
• Can I easily tell my therapist if I’m not happy with
something?
• Have I come away thinking about what I have learned –
about my child, our opportunities or my own skills and
understandings? Do I have a sense of purpose for the
week ahead?
Of course, you are not going to make a decision based
on one session, but over time a trend may emerge.
If there is potential for repair, try that first; but you may
consider making a change. Most therapists appreciate
feedback that helps them to get therapy back on track,
and navigating periods of frustration together can lead
to a much stronger partnership. You have the right to a
good quality service and the responsibility to ensure this
lies with the service provider. But if your service is ready
to listen, you can contribute to getting things right.
If you are so busy with therapy related activities
that you are exhausted or have no time to relax by
yourself or as a family, I encourage you to pause and
consider. Yes, there is evidence that children who have
Down syndrome learn best when there are repeated
opportunities for practice over time. But this practice
does not need to be provided directly to your child by
someone you see by appointment. In the early years,
children are learning to move, communicate, socialise,
play and begin to take care of themselves. All these
important skills can be learned in natural environments
– your home, your neighbourhood and at childcare or
preschool – in interactions with the people who know
them best. Practice need not feel like ‘therapy’: it can
become a natural part of the routines of everyday life,
leaving you time for those precious, ordinary things that
define your family.
Finally, here are some questions you might ask
yourself after a session with your early childhood
intervention service.
• After this session, do I feel positive about my child –
her personality and her abilities?
• Does my therapist notice and appreciate the things my
child does well? Does she recognise what makes her
strong as a person?
• Overall, was the session fun for my child?
• If things didn’t go so well, did my therapist provide a
positive perspective? Did she focus on what we could
learn from what happened?
8
Voice November 2016 | The Journal of Down Syndrome Australia
Robin is an early childhood special educator
with over 35 years’ experience. She is currently
Manager at Plumtree in Sydney’s Inner West.
As a young teacher she worked in the Down
Syndrome Program at Macquarie University.
There, she collaborated with Moira Pieterse and
others to write Small Steps: an Early Intervention
Program for Children with Developmental Delays
(1999). She has also worked on a range of
training materials, particularly around familycentred practice.