More letter writting

Over the past month, we have found that we are in a really difficult position with our spinal team. We were referred to the most experienced spinal surgeon at The Children's Hospital at Westmead, but he currently cannot perform surgery because he lacks adequate spinal monitoring for the surgeries. We are trying to work through the various possibilities to find an acceptable solution. Hopefully we have enough time and enough options that Madeline's care is not seriously compromised. Our surgeon encouraged us to write some letters to the Minister for Health, as well as to our representatives, so I sent off the following letter along with a photo of Madeline.

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Dear Minister,

I am the mother of three daughters, two of whom have diastrophic dysplasia, a rare and disabling form of dwarfism. My daughters were all born in Hong Kong but are Australian by descent. In December 2014, we moved back to Sydney from Hong Kong and they are currently treated at The Children's Hospital at Westmead (CHW). 

Many people with diastrophic dysplasia are affected by severe kyphoscoliosis (curvature of the spine) and will require surgery at some stage in their childhood. My daughter's (Madeline) kyphoscoliosis is in the upper thoracic region (between her shoulders) and I've been told it will be an extremely complex surgery requiring the most highly skilled surgeons available. We were referred to Dr Andrew Cree and have been told by other members of the spinal orthopedic team that no other surgeon at CHW has the expertise that we need, and that we would be compromising my daughters' care to see a less experienced surgeon.

When we recently met with Dr Cree, he told me that he is unable continue with my daughters' cases as he currently does not have the requisite staff to provide adequate spinal monitoring during surgery. The doctor who was previously doing the spinal monitoring has resigned so Dr Cree is currently using a consultant. However, this consultant is not experienced enough to handle the complexity of my daughter's case without the very real possibility of causing a spinal cord injury and potentially resulting in permanent paralysis for my daughter. It will take Dr Cree some time to find a suitable replacement and Madeline's surgery possibly cannot wait that long.

Dr Cree has told me that one alternative would be transferring to another doctor at CHW - however, I have previously been told that they do not have the expertise we require, and so I am hesitant to do so. Other alternatives may be seeking treatment in Melbourne, or with our original doctors in Hong Kong - however these are costly and may require significant periods of time away from home and out of school. I asked about the possibility of having the surgery in a private hospital and while this would have more optimal spinal monitoring, Madeline is not yet 10 years old or 30kg, which is a prerequisite for intensive care in the private hospital. I have advised Dr Cree that my preference (and what I believe would be in the best interest of Madeline) is if we remain with him and find some way that he is able to perform the surgery in Westmead with adequate spinal monitoring.

I find it appalling that the most experienced spinal surgeon at one of the most highly respected children's hospitals in Australia would find himself in this predicament. I do not understand all of the bureaucratic policies regarding consultants, but presumably there are other experienced spinal monitoring doctors available, if transferring to another doctor at CHW would solve the problem. Also presumably there are other experienced spinal monitoring doctors available in the private sector, if a private hospital would have been an option if it were not for the issues with intensive care. I urge you to work on a resolution to this issue as soon as possible so that Dr Cree is able to perform the kind of complex spinal surgeries that children like Madeline need in the near future.

For Madeline, this is an urgent matter. Delaying treatment will result in further deformity of her spine placing pressure on her heart and lungs. Without treatment, a spinal cord injury is highly likely, greatly increasing the degree of Madeline’s disability. 

Please do not hesitate to contact me to discuss these issues further,

Yours sincerely,

Nicole

Getting Political part 2

Within a few days of writing my letter to six politicians, I had some kind of response from three of them. My state MP was the first to respond via email, saying that he had written directly to the NSW Minister for Health, The Hon Jillian Skinner MP, to pass along my concerns. I had already written directly to her as well but I was grateful for the support. Next, I received a letter from my federal MP acknowledging my concerns and welcoming us to meet him to discuss them further. Third, I received a phone call from EnableNSW (the organisation that funds wheelchairs) stating that due to my letter to Ms Skinner, our case would be reviewed early and the funds for Madeline's wheelchair had been released. A week later, I received a letter stating that Madeline's wheelchair had been ordered. Apart from this, I did not have any of my questions or concerns addressed. I decided while I was on a roll, I would write again directly to Ms Skinner to ask for a response to my questions and concerns. Here is my letter:

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Dear Minister,

I wrote to you two and a half weeks ago concerning my daughters, Madeline and Briella, who are both affected by diastrophic dysplasia, a debilitating form of dwarfism that leads to mobility impairments. At the time, Madeline looked as though she would be entering kindergarten with no mobility device of her own after months of trials, applications and waiting for funding. Shortly after I wrote to you, I had a call from EnableNSW saying that our wheelchair application had been reviewed early and the funds were now available for Madeline’s wheelchair. Yesterday, I received a letter from Enable NSW saying that the wheelchair has now been ordered. Madeline should have her own wheelchair within weeks.

While I am ecstatic with this result for Madeline, my original questions in my letter to you have not been addressed. Namely, why is mobility currently overlooked in funding for children with disabilities? Why is it acceptable for a child to need to wait a year or longer for a device that will increase his or her independence? Madeline has certainly benefited from the letter I wrote to you, but what of children who do not have someone to speak on their behalf? 

Ultimately, the state will pay for citizens with disabilities – either in disability pensions, or in early intervention. Withholding independence from children will lead to adults who are less independent and therefore more dependent on the state. From an economic point of view, it makes more sense to invest in early intervention in order to enable children with disabilities to grow up to be independent adults who contribute to society and have the capacity to support themselves financially, not relying on disability pensions. 

I would be eager to discuss these issues with you in more detail. 

Yours faithfully,

Nicole 

 ___________________

Today, I received a disappointing response back. 

 

Basically she's saying:

- she regrets any distresses and inconveniences that I have had as a result of raising a child with a disability

- Madeline's wheelchair is ordered

- if I have any other concerns, please talk to someone else. 

Note, she still did not address a single one of my questions - and I highly doubt that the person she referred me to would be able to address these questions either (but maybe I should try?) 

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So where to from here? I have a meeting with my federal MP on Friday and we will see how that goes. Some people who I have talked to have commented that often the voice of one individual is not enough to make change - they recommend that I find and join up with an organisation who has a similar passion for mobility and join my voice to theirs so that together our voice will be louder. I would be interested if anyone has any suggestions or leads as to what to do next. This is a time of change with an election looming, and NDIS starting to be implemented more widely around Australia so if there is ever a time to hope to make a difference, it might as well be now.

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.

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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