Parliamentary Inquiry: The Joint Standing Committee on The National Disability Insurance Scheme - Capability and Culture of the NDIA

Prepare by myself, of my own accord reflecting upon my own experience/s with the National Disability Insurance Scheme (NDIS) and National Disability Insurance Agency (NDIA), and those recalled to me over the years from fellow people living with Ehlers Danlos Syndrome (EDS) and other heritable Connective Tissue Disorders (hCTD).

Prepared on 15th December 2022

                                                            I am more than willing and in fact very keen to be able

to discuss in greater detail with members of the inquiry committee either in person or via video conference the impacts of EDS and the reasons why / how interactions with the NDIA could be vastly improved for people living with this condition

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My name is I am an Australian registered pharmacist, medical writer, patient advocate, mother, wife, carer and person living with rare disease. I live with hypermobile Ehlers Danlos Syndrome (hEDS). I have 2 children, 1 of whom is diagnosed with hypermobility spectrum disorder (HSD) which is a precursor, if you will, to hEDS. My diagnosed child is 6 and lives with diagnosed neurodiversity also.

I myself have had NDIS access since mid 2020. NDIS has been nothing short of life changing for me. But there are many caveats to this. Whilst the impacts have been overwhelmingly positive for myself, I have had to fiercely advocate for myself and my son (who previously met access on the early intervention pathway) every step of the way in order to gain and then maintain access and utilise our plans such that we received these life changing benefits.

I represent as one member of the Ehlers-Danlos Syndrome (EDS) community. We are for the most part I would say one of, if not, the most disenfranchised and underserved patient communities in Australia.

We are often misdiagnosed many times before we reach our correct diagnosis. We are often left simply undiagnosed despite gross deficits in all domains of daily life that results in significant disability for many.

EDS is a permanent and lifelong disability for which there are no evidence based nor effective treatments. There are no pharmacological nor surgical interventions available and there is no cure. Management of the condition is key, and good management comes from having access to early diagnosis, which leads to early intervention. This early intervention then has the result of reducing disease and disability burden (individually and at a population level) and improving individual participation in education and employment effectively reducing the overall costs associated with the increased disease burden that results when early

EDS (Ehlers-Danlos Syndrome) and Access to NDIS

Intervention and effective management strategies are not employed.

When the condition is not diagnosed early and thus early interventions initiated, the realised costs and economic burden of the disease are extensive.

EDS results due to defects in collagen production. It is in most instances an inherited disorder, with a genetic mutation having been identified in all but 1 of the 14 subtypes of the condition.

Whilst not a life limiting condition for most (there are some subtypes of EDS which are), the impacts on level of function and activities of daily living can be immense. With significant functional impairment and disability being apparent in many who live with the condition.

With regards to the specific terms of reference please see below responses: which detail the procedural issues around operational processes and the experiences of participants.

• The process required to be completed to gain access to NDIS is arduous and too taxing for people living with disability.
  • People needing access to NDIS are not always able to fiercely advocate their needs nor should they have to.
  • It takes vast amounts of energy and stamina; both cognitive and physical, and this is something that quite bluntly many people living with EDS do not have.
    • The process needs to engage current healthcare providers rather than requiring reports from occupational therapists and such which many people do not have engaged prior to gaining access to NDIS. It is access itself which opens up the world of allied health to participants.
• The capability and culture of the staff employed by the NDIA is such that they lack insight into the individual and often complex plights of people applying to the NDIA for access to NDIS. This is often reflected in staff that are:
  • Lacking in compassion, empathy and sensitivity
  • Not adequately able to discuss goals, outcomes and required processes with potential participants such that language is often inappropriate i.e.: staff are often ablesit and discriminatory hinting to the fact that they are not adequately equipped or trained to be carrying out the important role that they are.
  • Often conflicting advice and suggested actions given to participants by NDIA staff is confusing. Consistency does not exist across the board, and it should.
    • If the NDIA continues to employ staff who are not medically trained it would be prudent to ensure that a mandatory basic level of medical terminology is stipulated. This applies equally to staff having a basic understanding of inclusive language and language that is and is not ableist of discriminatory.

I myself have had experiences with telephone staff who were extremely ableist. One such encounter was in the early stages of my application when a member of NDIA staff told me;

‘if you are well enough to go on holidays you are not disabled enough for NDIS’

This was discouraging even for me as someone with a hefty medical background and understanding of how and how to speak surrounding disability. Many others in this position would have given up there and then.

• My child would not have been diagnosed early had it not been for my own diagnosis and in turn he would not have access to NDIS funding had it not been for his diagnosis.
• Early intervention from the ages of 4-6.5 years for him has also been life changing.
• He is linked in with appropriate services but more importantly he received the early therapy he needed for his hypermobile joints, his emotional regulation and poor proprioception.
• Had it not been for the early intervention he would not have had 2 years of near weekly speech and occupational therapies. Both of these therapies assisted him greatly in his transition to mainstream schooling this year for kindergarten.

But again having access to this for him and also having an adequate amount of funding approved took far more self advocacy than most are able to enter into.

The NDIA has a responsibility to ensure that people are not missing out on gaining access to the NDIS due to their own inability to self advocate. Access is about function not a diagnosis but so many with EDS for example miss out because their ‘diagnosis’ is not determined to be lifelong and permanent but this is based on false illness ideals of what EDS is. EDS is a GENETIC and LIFELONG condition which more often than not brings with it reduced function and varying levels of disability. ESD is no less a lifelong condition than ME or Parkinson’s disease and both these conditions see participants granted access very easily. Often EDS is encountered with greater levels of disability than these conditions, which both do have evidence based pharmacological treatment and management options.

The value of the NDIS will only be fully realised when all that need it, have access. And in the process of accessing it one is not made to continually feel as if they are not worthy of it, or not disabled enough.

I look forward to hearing the outcome of this inquiry and hope that the pathways to a fuller life for all Australians with disabilities is made a whole lot smoother.