Heavenly Beverley : Stuck In The Middle With You...

Back in the time of the dinosaurs, a talented chap named Gerry Rafferty formed a group, Stealers Wheel, and they recorded a ditty called "Stuck In The Middle With You". One line of thought is that the lyrics were a reference to all the razzmatazz that goes on in the music industry. Another opinion was that the words depicted sharing a stage with Billy Connolly. Whatever the meaning, the chorus has always stayed with me, particularly in times of frustration...

"Fools to the left of me, jokers to the right, here I am, stuck in the middle with you".

Dealing with the NDIS has seemed to mirror the chorus of this song. Or hitting my head against a brick wall repeatedly. In the past twelve months, I have requested at least three reviews or change of circumstances for Alex's NDIS plan. A new and totally inadequate plan was launched with much fanfare in September.

Back in Spring 2021, I was starting to get the handle of my latest Department of Stealth and Total Obscurity - the National Disability Insurance Agency. With the assistance of advocate Jeanette Barnesby, new plan manager Kathryn Salt and new support coordinator Shannon Kirk (beginning in November), all that was as clear as mud is becoming a little less opaque. Not entirely visible yet of course.

Brand spanking new Local Area Coordinator Katie-Ann (our fourth in two years?) and I met at lunchtime last Tuesday. The purpose of this meeting was to thrash out Alex's new plan, which will hopefully (better) meet his needs and be launched before hell freezes over. She was most refreshing in her approach as -

1. I could actually understand her!

2. She appeared genuinely keen to help Alex meet his goals, including forward planning for his dream of opening a drop in café.

3. She was empathetic and most illuminatingly, honest about her capacities to aid Alex live his life most ordinary.

For the very first time, she explained that the LAC role was primarily to set up NDIS plans for clients, most of whom would be satisfied with this process. She also informed me of the NDIA Planner pathway. Launched back in 2018, (I checked), these services were offered to clients with very complex needs - homeless, incarcerated or with severe and persistent mental health illness.

Alex is too complex for just LAC support and not complex enough to warrant receiving the attention of an NDIA Planner. We are supposed to manage with the help of Shannon, our Support Coordinator, along with Katie-Ann. Which would have been excellent is the NDIA had given us enough hours. Since November, Shannon has used nineteen of the allocated twenty-four hours of support funding allocated to last (!) until 2024.

Hence, an immediate need for more Support Coordination hours. We have also wished to add Alex's other conditions to his NDIA profile to truly reflect his status. We have pointed to glaring issues with his transport funding, his support funding and Alinea's ability to "upskill" Alex so he could progress with his goal of having a drop in café. Needless to say, we are still waiting for feedback.

Just before Christmas, we received the off-the-record verbal affirmation that Alex's plan review would go ahead. I was momentarily ecstatic after so much disappointment. Then the NDIA closed down for their Christmas break, because nobody requires services at the end of December/beginning of January, do they?

Finally, phonecalls to the NDIA and the Minister caused the process to recommence. Hence, the meeting with Katie-Ann last Tuesday. On 25 January. After being given the go-ahead at Christmas...

Alex is nearly thirty-one years old. I have always aspired to the mantra "knowledge is power". So I can make informed decisions that affect his and my life. Unfortunately, the NDIA/NDIS does not always appear to follow a similar path.

My entire 2021 was spent seeking information out through a series of chance encounters. Many thanks must go to Stacey Marasco and Lesley Brown who first mentioned the term "Support Coordinator" back in May. Then through Connect Case Management, who provided Alex's Daily Functionality report, in July, I changed Plan Managers (the people who pay Alex's NDIS bills) from a useless mob in Melbourne to Your Choice Case Management here in Perth. Through Evan Salt, I then met Jeanette Barnesby and Kathryn Salt who pointed me in the right direction towards Support Coordination. That is how I connected with Shannon Kirk from District360, who has been unfailingly generous with her explanations of the NDIS juggernaut. Her work ethic to assist Alex and me has been phenomenal.

Just as well. My carer fatigue is now chronic. There is no way I could continue to support Alex to live an ordinary life without these dynamic people who continue to provide me with growing comprehension of the NDIS' modus operandi. These individuals continue to go above and beyond and I can only thank them profoundly from the bottom of my heart.

Shannon and I have a bet, utilising imaginary sheep stations, regarding the timing and content of Alex's latest plan. She is quite optimistic. I just live in hope...