Since moving back to Australia, I have been slowly navigating the medical system here. Now Australia is a country of high tax and high social welfare but I have noticed discrepancies within that social welfare system that was worth writing to a few politicians about. So I sat down and blurted it all out and sent it off to six different politicians, including state and federal ministers of health, ministers of disability/social services as well as my own electoral representatives. Since it's the longest thing I've written for quite a while, I might as well share it on here as well.
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Dear Minister,
Please allow me to introduce myself. My name is Nicole and I am the mother of three daughters; Lana (7), Madeline (5) and Briella (2).
My husband and I were living in Hong Kong when they were born and we all are
Australian citizens (I was born here, my husband was naturalised in 1988 and my
daughters are citizens by descent). My younger two daughters, Madeline and
Briella, are both affected by a rare and debilitating form of dwarfism called
diastrophic dysplasia.
Diastrophic dysplasia significantly affects a person’s mobility,
although there are other issues associated with this condition. Many people
with this condition also have hearing loss (of my children, Madeline’s hearing
is unaffected; however, Briella has mild to moderate hearing loss). Despite
this, this condition is a physical (rather than mental or cognitive) disability,
and people with diastrophic dysplasia have every potential to develop into
contributing members of society – provided that they are born into a society
which both accepts them and accommodates for their differences. For example, one man with diastrophic
dysplasia in Brazil is a well-recognised geneticist. A Sydney man with this
condition was a lawyer. It is my hope and goal that my daughters will grow up
to similarly contribute to society.
Part of the reason for our move back to Australia in
December 2014 was the recognition that Australia would be a society in which my
daughters would be able to develop best into independent adults. In Hong Kong,
we paid relatively less tax but there is minimal social welfare for those who
need it. By contrast, in Australia, our tax is much higher but the expectation
is that those who need assistance should be able to access funds for their
needs. Disability is something which can affect any person or any family at any
time and rightly should be funded by taxpayers’ money.
Upon moving back, I was overwhelmed at the level of support
here compared to Hong Kong in many areas. In particular, one area of which I
would speak very highly of is the support provided for children with hearing impairments.
Briella was diagnosed with mild to moderate hearing loss and was provided with
a $3,000 hearing aid within two weeks. In addition, we attend the Royal
Institute for Deaf and Blind Children (RIDBC) weekly for individual sessions to
assist her to catch up with her language development which was delayed both due
to the hearing loss and also due to her cleft palate. She also attends a group
session at RIDBC every fortnight where she can interact with other children her
age with hearing impairments. For all of this support, we pay virtually nothing
at all (all we do pay is a minimal fee to Australian Hearing, which covers all
maintenance of and batteries for the hearing aid). If Briella ever damages or
loses her hearing aid, it will be replaced at no cost to us.
There is one area of need, however, which I feel is
remarkably lacking in support – and that is mobility. Madeline can walk
independently; however her legs are extremely short and her joints are
restricted, so because of this she is mobility-impaired. Within a room or a
house, she is mobile without any assistance; however over a larger area (for
example, a trip to the grocery store, or an hour at the mall), she needs the aid
of a walking frame so that she can walk independently. The walking frame helps
her with stability (she is prone to falls) and it also improves her speed and
endurance since she can bear weight on it with her upper body as well. However,
even with the aid of a walking frame, she does not have the stamina for a full
day on her feet and as such, she also needs a wheelchair for those longer days
out (for example, a trip to the zoo).
When we moved back to Australia, we attempted to begin the
process early (in February 2015) to ensure that she would have a device when
she enters kindergarten (which would be at the end of this month). It took
several months to trial several different wheelchairs and choose which one best
fit her needs. We finally submitted the application to EnableNSW in August 2015
(six months after we first began the process), and it was approved quickly, but
we were advised that it takes several months for funds to be available for this
and that we should not expect to have the wheelchair for about a year.
Given that Madeline needs both a walking frame and a
wheelchair, in April 2015 we separately also began the process to get a walking
frame for Madeline, and we were told to hire one from the hospital while we
were waiting. The walking frame that we have hired is not ideal for Madeline
but it is better than nothing. However, by this time, since we had already
applied for Madeline’s wheelchair with EnableNSW, we were advised that for her
walking frame, our only options were to submit applications for funding with
various charities (such as Variety) or to pay for the walking frame ourselves.
We are still waiting to hear if our application for funding with Variety is successful
or not, but it is looking unlikely that Madeline will have any mobility device
of her own when she enters kindergarten at the end of this month.
Comparing the funding available between mobility impairments
and hearing impairments, I have to ask why is there no better funding available
for children with mobility impairments? Why are children with mobility
impairments forced to wait for a year or longer for a device that will increase
their independence? Shouldn’t a child in this country be able to enter
kindergarten and be able to independently navigate their school campus and
field trips?
I suggest that investing in devices for children with
mobility impairments is a worthwhile investment. For one, walking frames are
significantly cheaper than hearing aids. They are also less likely to be lost
or damaged by young children (Briella has already damaged her hearing aid by
putting it in her mouth). The amount of independence that they can give to a
child is life-changing for them. Mobility is just as important to a child as
hearing is, as without mobility a child cannot independently participate with
his or her peers at an age-appropriate level. Why is there not better funding
for such children?
Briella is not yet walking independently but at age two, she
decided of her own accord to take over her sister’s walking frame. With it, she
took her first steps. (Sadly, no professional ever suggested to me that it may
be beneficial for her to trial a walking frame.) Since she began using her
sister’s walking frame, she has grown in both strength and independence. She
now will ask for the “walker” and use it to navigate our house. It also allows
for her to be in the age-appropriate position - standing upright on her feet.
Prior to this hostile takeover, she could not stand independently at all. But
now, within a relatively short period of time, she has learned to stand
independently for up to a minute or two. If a walking frame had not been
available in our home already, she would have been disadvantaged.
My children have the benefit of well-educated parents who
push their doctors and therapists for these devices which increase their
independence, but what happens to children who don’t have that? They end up
being far more disabled than they ever needed to be. They are disabled by a
lack of funding and by a system which does not seek to give children the
mobility aids that they need. And in turn, these children are more likely to
have unequal access to education and less likely to have high career
aspirations. This may result in them ending up relying on government pensions
for life. Giving children independence at a young age can only benefit them
throughout their entire life. I hope that my children succeed at schooling and
end up in well-paying jobs so that their taxes can contribute to a system that
has helped them when they were young and needed it.
I write this to you two weeks before Madeline is due to
start kindergarten. She will very likely start kindergarten without an
appropriate walking frame or wheelchair and as a result, will find it difficult
to navigate her school campus. She will not be able to fully participate in
field trips or other class events because mobility is not worth funding and it
is considered acceptable for a child to wait a year for independence. I find
this extremely disappointing and unacceptable and would love to have the
opportunity to further discuss these issues with you at your convenience.
Yours faithfully,
Nicole
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