Friday, January 15, 2016

Getting Political

It has been a while since I wrote here. I mostly share snippets of our lives on my Facebook page these days. I wanted to share something that is too long for Facebook though.

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.


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,


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