Beverley's weird spring weather continued today. A mild night led to confusion about what to wear to the Gallery. Leggings with my tunic or not. Long or short sleeved tee shirt. In the end, I opted for long sleeve and leggings, which was just about spot on inside. Throughout the day, the sky was gloomy and the wind brisk. Every now and then, drizzle threatened. I hauled my heater out and turned it on between my knees. I believe that the temperature struggled to around 21 degrees C (69.8 degrees F). Considering the average for November here in nearly 29 degrees C, the weather gods have definitely let us down. Tomorrow will also be cool before the thermometer climbs agreeably back into the mid 20s on Saturday.
I think that when we finally enter summer, we will no doubt be complaining after the first heatwave. Personally, I am actually looking forward to the anticipation of some decent warmth. The pool is now open, the days are still deliciously lengthening, little rain is necessitating my presence in the garden and with Michael's broken foot, we will be taking a few weeks off and enjoy relaxing in Station House. Oh, bliss.
The long winter and unpredictable spring has mirrored my rollercoaster ride with the National Disability Insurance Agency/Scheme. This organisation and its associated funding was supposed to make the lot of people with disabilities, their carers and families better. This has not turned out to be so for many participants and their nominees.
The NDIS would have to be the most difficult, confusing, unhelpful and contradictory system that I tried to navigate on my own. Since October 2019, Alex has had four plans, four plan reviews, three local area coordinators and very little actual assistance. As for me, I had the distinct feeling of being a mushroom for the majority of that period.
Most of this year has been spent in search for help to understand this complicated leviathan. Finally, in the last few months, I have achieved this goal. First of all, a knowledgeable Occupational Therapist able to conduct a daily functionality assessment for Alex. That was sheer luck after many phone calls and e-mails. Then came a connection with Jeanette Barnesby, an independent mentor, recommended by Evan and Kathryn Salt at Your Choice Plan Management, whom I engaged to administer Alex's funding. Having an intelligent and efficient group such as Your Choice manage Alex's monies confirmed what a waste of time Plan Partners (in Melbourne) were in attempting to do the same job. And lastly, eight days ago, I met my brand new support coordinator, whom I was able to access via another connection with Kathryn Salt.
Support coordinators are a conduit between a participant and the NDIA. I didn't know they existed before May and I certainly didn't know how to find one. Unlike Local Area Coordinators, they know the protocols, procedures and most importantly, the language of the NDIS. They are actually there to help us.
And what have I found out with the help of Shannon in the last eight days? That Alex, who has frequent stress fractures, needs regular podiatry and custom orthotics and can access his NDIS funds to pay for these services. That we can buy Alex a smart watch to monitor his heart rate. That we can apply for exercise physiology, speech pathology, occupational therapy and psychological support. That his employment service probably hasn't completed a service agreement with Alex for over twelve months. That his previous plan managers had outstanding unpaid invoices from February and March this year. That his support organisation hasn't been following correct financial procedures and have not implemented my requested changes which were discussed and signed off in February. That his LAC couldn't act in his best interests because she had to follow the NDIS rules about how to fill in his proposed plans. And that as Alex's nominee with my very own NDIS number, I should have been included in all correspondence, planning and decisions rather than Alex. That is why he has me as his nominee.
The NDIA continues to refuse to fund airconditioning in Alex's unit. We have been knocked back twice - once for "lack of medical information" and the other because my request wasn't "value for money" We were also knocked back for increased support coordination and an internal review cleared the NDIA of any error in their assessment. So far, Shannon has used five hours out of the current twenty four support coordination hours that have been allocated - over three years.
My head is whirling. I am hurtling up a seriously steep J curve. I am exhausted, stretched to my understanding limits, overwhelmingly grateful for the help I am finally receiving and finally hopeful that I may be able to act in Alex's best interests and improve his life to become more ordinary.
I believe there may be calmer and happier times coming...
Thus endeth this lesson!
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