Emmilou’s NDIS Access Experience
I will never forget the first two times Emmilou was knocked back on eligibility for the NDIS...
Both times when we received these calls we were already at the hospital having been admitted several days prior… I cried and cried some more at the injustice of it all. How could my daughter, who had spent over half of her little life in hospital, be ineligible? It just didn’t seem fair. But it had nothing to do with fair – and everything to do with ‘tick-able algorithms’, correct ‘evidence’ and ‘inalienable proof’.
Before Emmilou was born we were told by a social worker at Canberra Hospital that she would be eligible for the NDIS. Prior to the conception of our child, Kirsty (my wife) and I had put much thought into the NDIS, outside of how it applied to our work. It is incredible how something once so nonchalant one day, can become everything the next – when applied to a personal vendetta. And a vendetta it became – to date, it is my most important and meaningful campaign yet (and as a political enthusiast – this means quite a lot!). After the initial chaos of her birth and the ever-evolving ‘diagnosis’ train had slowed a little, we began to think about how much support our little lady would need to live a fulfilling, meaningful and hopefully pain free life. I turned my sights to the NDIS.
I followed the due process, and applied for the first time when Emmilou was around 5 months old. I did it via an access phone call, and I filled out some preliminary paperwork, and handed over a bunch of ‘discharge summaries’ that gave a vague insight into the hardships she encountered medically. They said nothing at all about the impact these medical effects had on her day to day functionality. This was my first mistake… Emmilou’s diagnosis is registered under the Level B supports for “assumed disability” with the NDIS eligibility criteria. I thought that assumed = access… well that assumption made an arse out of me!
I learned the hard way – Functionality is key! I had been in hospital for 5 days at this point when my phone rang and a polite and empathetic soul informed me that Emmilou had been denied access. Denied because she did not require ANY additional support other than a “typical” 5 month old. This could not have been further from the truth. Yes, it is true; I still changed her bum (much like all babies required), I was still responsible for ensuring she was fed and hydrated (yup, again a normal expectation), and yes she too was dependant on me for love… (like all children). However, unlike a “typical” parenting experience, I was navigating over 15 teams of hospital specialities, an endless and ever-changing program of medications/food journals and oral requirements/procedures/outpatient appointments; emergencies to say the least. I had lost my daughter 3-4 times at this point to an unknown and (yet) undiagnosed conditions, spent more time in an ambulance than most people in a lifetime, given my daughter over to doctors for medical procedures/operations, and already referred to the hospital as my second home – our stays were so regular.
To say that I felt defeated at this point was an understatement. I did what I guess many other parents of medically challenged kids would do; I parked the NDIS for a later challenge – and went on with my day-to-day. Then one day, out of the blue I picked it up again. But this time I followed a different route – I went to my local NDIA agency office and asked for the physical paperwork required to submit an access registration. I even booked an hour-long (which turned into a few hours long) meeting with the staff and went through in detail the requirements necessary for our specific situation. I followed their advice to a tee – I reached out to all 15 teams and asked for “reports” to aid Emmilou in accessing the NDIS. At this time, the NDIS was very new in WA so, in their defence, many of the specialists were experiencing this new phenomenon for the first time also. This was my second mistake. I assumed in this scenario that specialist medical professional = specialist NDIS report writer. Again I was wrong.
Yes, my daughter’s cardiologist knows the medical requirements and textbook symptoms associated with my daughter’s heart defects… and yes, her spinal specialist was aware of abnormalities and had a plan for future surgeries to accommodate for her… and yes, her paediatrician was across the coordination of these medical teams – But nobody knew how these impacted her in the DAY-TO-DAY life better than Kirsty and I, her parents. Only we knew that her legs turned blue when held in an upright position for too long, and blood flow was restricted. Only we knew that she required small and frequent feeds, to accommodate for her increased fatigue. Only we knew that she screamed for hours and hours in the night, unable to communicate her pain in any other way. Only we knew the level of her frustration, that she was unable to move freely – confined by her splint that held her legs together. Only we knew, what we knew.
The second phone call came, again when I was on the hospital ward. This time Emmilou had been suffering for 6 weeks with undiagnosed chronic bronchitis and had a significant febrile convulsion (where children can experience fits and seizures when they have a high temperature) – resulting in her admission and prognosis – and more tests, medications and trauma. Again, unsuccessful. My mistake was handing over my daughters NDIS future to her specialists – who know only what they have learned in textbooks, and how that should equate to daily life. And don’t get me wrong, they are experts in their fields… but Kirsty and I are the experts of our child. The person on the phone delivering this sombre news (well…trying to speak, through the sobs down the phone I involuntarily dispensed) told me to try again when she was over one. As apparently proving a difference in functionality was easier at this point. I saw why this would have merit for a mass-produced NDIA process – but this was a perfect example of a platform trying to be black and white when it was so obviously grey.
Again the NDIS got parked. Except something changed between the last attempt and the latest attempt. Actually, who am I kidding… so much had changed in this time, more than this blog alone could capture, so I won’t even try. But in an attempt to provide some context for this battle, we were again in hospital. This time Emmilou had been ‘off’ for a few days, disinterested in her usual intake of food (which was always low anyway) and Kirst and I were distracted (by a severe illness in the extended family). One morning Emmilou didn’t wake up… she was unarousable. We were again admitted, only this time we got a more severe diagnosis – she had a childhood disease known as Ketotic-Hypoglyciamia; a rare disease that affects the body’s ability to regulate blood sugar levels. It meant that, if Emmilou’s blood sugar dropped too low, she could slip into a coma. This diagnosis meant even more vigilance, support and attention needed to be afforded to an already medically complex child.
Something in me snapped. I knew then that I would no longer accept an ‘ineligible’ status. This time I took the entire process in my own hands. I went to a different government agency NDIA provider – I asked for the forms needed to complete an access registration. I also called the 1800 number and did a phone access. I wanted to be sure that I had checked off all the boxes needed. I reached out again to all Emmilou’s therapy teams, and I appointed a coordinator through the hospital that was responsible for the collation of all the requirements I asked for – in excruciating detail. Where this was lacking I provided my own ‘drafts’ to be signed on sight or amended and returned. This ensured that I got all the functionality aspects down to a tee. I then did something that I believe made a significant difference this time around. I reached out to my local parliamentary member. I was fortunate in that I knew him personally, so I was able to connect quickly – however, this is an option for everyone. And their assistance when done right is invaluable. I was assigned a spokesperson – this wonderful woman checked in with me regularly and did some leg work at the back end to expedite my process.
The next phone call was the one I had been hoping for since she was born…Emmilou was granted access within one month! And we had a planning meeting scheduled within weeks of that.
Was it a lot of work? Immensely, but it was worth every second of it.
Much love, and success to you!
