Tuesday, February 16, 2016

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:


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,



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?) 


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.

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