General issues around the implementation and performance of the NDIS

                               Submission 32

To Whom it may concern,

I wish to express my strong support for placing Ehlers-Danlos Syndrome on list B of the operational guidelines for NDIS.

The condition is life-long, more often than not it is debilitating, and is known to worsen or plateau over time. Due to the variability in presentation from patient to patient, i do agree with the assessment of functional impairment/capacity of people with EDS. However, it is a grave injustice that sufferers of this genetic disease must endure a system that is inappropriate for conditions that do not fit a standard model.

Due to it’s life-crippling severity and increasing diagnoses in the population (due to increased awareness, not to true new cases), it has become evident that the syndrome for which I and many others endure deserves the recognition and understanding that we are so rarely given for our invisible illness.

It is not that the disease is uncommon, but under- and mis-diagnosed as a number of other conditions. As awareness increases, it is now known that these issues fit into one condition of varying presentation (EDS). Due to this, I strongly support placing EDS on list B for the NDIS operating guidelines. We are many and often feel too impaired or unheard to seek a change to the way we try to gain access to the NDIS. But the majority of posts in several facebook support groups speak to the unfairness of the system that fails to accomodate atypical illnesses like ours.

We wish to finally be listed. It is more and more apparent to medical professionals as they become aware of the systemic nature of this ‘umbrella’ condition that EDS deserves to be included and that this change has become a matter of time. As such we wish for this recognition to happen now.

What can we do to further make this change? It is a complicated syndrome and without staff able to comprehend the unique situation EDS patients are wrongly being denied the support we need. Our quality of life is lower, we do our best to live with the condition every single day but like other people on the NDIS we need this help.

Sincerely, Ryan Newling