Heavenly Beverley : Hang On! Help Is On Its Way...

The Little River Band released "Help is on its Way" in April 1977. As a fifteen-year-old enraptured by Countdown, shown live by the ABC on Sunday nights, they were one of a myriad of Australian and international bands I followed during that great era orchestrated by Molly Meldrum. How many watched Countdown through its tenure? I don't know if any weekly music show since has captured the spirit of Countdown, of its cheerfully ineffectual but musically brilliant host and the audience of mostly young girls who clapped and danced their way through every episode. We are culturally poorer in this country without our weekly dose of Countdown.

Since the passing of the sublime and sadly missed Perth ABC radio broadcaster Russell (Rusty) Woolf early on Tuesday morning, I have been playing rather a lot of one of his favourite genres, Yacht Rock. Think Alan Parsons, Boz Scaggs, Christopher Cross, Steely Dan, Chicago, Toto, George Benson and one has the essence of Yacht Rock.

The Little River Band would probably not be described as Yacht Rock, though "Reminiscing" could partially fall into that category. "Help is on its Way" is much more Pop Rock, given its guitar reliance and lack of subtlety. Now, don't get me wrong, "Help is on its Way" is still a great Australian song, reaching number one in the charts and was the impetus for this post.

Those who read my regular ramblings will be aware of my relationship with the NDIA/NDIS. If I professed any affection toward this agency and its scheme, I would be lying through my teeth. The NDIS/NDIA would have to be the most monstrous, the most unfriendly, the most obstructive, most secretive and the most unwieldly bureaucratic nightmare I have ever had the misfortune to encounter. To ask a question at their call centre is to invite six different responses from six different staffers. Rivalling Centrelink with their ham fisted efforts, I have been suffering from extreme frustration, disbelief, anxiety and uncertainty in my dealings with them over the last couple of years.

Expounded as the next best thing to sliced bread for the disabled, the National Disability Insurance Agency/Scheme currently does not deliver. In my quest to divert some of Alex's funding towards reverse cycle airconditioning for his well being, health and functionality, I have been stymied at every turn. Not enough medical information, not value for money, not the correct form have been some of the excuses with zero feedback in my quest to make my Autistic Superstar's quality of life better. Their internal review of their decision completely exonerated them.

Then, an almighty breakthrough. After being thoroughly dissatisfied with Alex's Plan Managers (based in Melbourne), I have become a client of Your Choice Plan Management in Perth and have met the scarily knowledgeable and terrifying efficient Kathryn Salt, along with an absolute powerhouse in NDIS advocacy Jeanette Barnesby. Between the pair of them, I have been taken by the scruff of my neck and given a NDIS 101 pounding. And I am so bloody grateful to them both. I now receive invoices to approve, have been given copious information and firm guidance and have actually started to understand how the NDIA/S operates.

They don't read paragraphs. Use point form.

Research their vocabulary, so the information is in their lingo.

Use an advocate who knows the ropes.

Do not accept a plan if dissatisfied with its outcomes.

Get the plan deciphered by an advocate or support coordinator.

Insist on service agreements with all parties. I think I am still waiting for one with Paraquad where Alex works three days a week.

As a parent and NDIS participant myself, I am supposed to receive all correspondence from the NDIA on Alex's behalf.

Alex does not understand his Plan. His LAC (Local Area Coordinator) has been putting documents in front of him to sign that he may have no comprehension.

Local Area Coordinators follow a NDIS formula, which may not be in the best interests of the participant.

This is what I have learnt in less than two months after years of NDIS fog. Do not let this agency treat its participants like mushrooms. Rest from time to time if necessary, but keep trying. The NDIA appears to thrive on its client base giving up.

On Wednesday night, Jeanette introduced me to a whole new world of providing information to the NDIA/S. Last night, my homework continued as I added to the base that I am providing Jeanette. Between the pair of them, Kathryn and Jeanette are providing me with a new and structured frame to navigate the NDIS.

Maybe, just maybe, I can learn enough to improve Alex's outcomes, his health and his life.