Heavenly Beverley : How Long Must I Endure the Bewildering Buffoonery Of The National Disability Insurance Agency/Scheme?!

We returned our Autistic Superstar to his city digs yesterday after a most pleasant weekend. Alex coped with the pain and irritation of his Keratoconus treatment remarkably well, administering his eye medications at prompt intervals thoroughly and following all his surgeon's instructions.

I was a bit under the weather having undergone a knee arthroscopy before Alex's procedure. I had my surgery on Friday morning; Alex had his procedure on Friday afternoon. Hence, I had ample opportunity until Monday afternoon to observe my youngest born for a reasonable length of time, be very proud of his abilities and add to my understanding of what makes him tick.

Alex is now thirty-one years old. Born with a complex heart defect, he continued to gather further conditions throughout his childhood and young adulthood, becoming the rather interesting individual he is today. In spite of all his challenges, he has a full and happy life, enjoying the gym, his Church and his friends. Watching him participate with Sunday church services online allowed me a peek into those he regards as his tribe.

He lives in and is very proud of his Housing Authority unit. He works three days a week for Alinea, an Australian Disability Enterprise who operate Paraquad Industries through a series of supported employment sites. Alex is a Café Attendant at the Shenton Park facility and loves his role and his workplace.

Which leads me to that continuing lurking unease regarding his future. Recently, Activ Foundation announced that, due to changes in their NDIS funding, they were going to close their supported employment workplaces, potentially throwing seven hundred participants into an uncertain future.

For a very long time, I was not a fan of Disability Enterprises such as Activ and Alinea. I had always aimed at open employment for Alex, working in Hospitality. He had also completed several relevant courses through TAFEs in Beaconsfield and Joondalup. Unfortunately, I discovered that my hopes for Alex proved to be frustratingly out of reach. The other tragic reality was that the previous Liberal government had no political will to assist this significant cohort of people.

There were a few teething issues when Alex joined Alinea. These have all been happily resolved and I now regard the staff at Paraquad Industries as an integral part of his support team. Alex is confident and competent there, socialises with the other employees and has genuine pride in doing his job. So, my fears for Alex's long term workplace going down a similar road to Activ is most unsettling indeed.

Fortunately, an exceedingly vocal group of parent advocates have delayed the closure of Activ's work settings for another eighteen months. That such a course of action was necessary highlights the NDIA's complete lack of understanding of those they are supposed to assist.

Their Mission Statement waxes lyrical about "Optimising social and economic independence and full participation for people with disability. Building and managing a world leading National Disability Insurance Scheme for all Australians." (their emphasis).

And its purpose is declared to be thus - "The purpose of the National Disability Insurance Agency (NDIA) is to increase the ability of individuals with a significant and permanent disability (participants) to be more independent, and engage more socially and economically, at the same time as delivering a financially sustainable Scheme that inspires community and stakeholder confidence."

As a person with no intellectual or other disability (apart from being a Lunachick) I still have some difficulty fully digesting these wordy tomes. What hope do some of the NDIA participants have if their comprehension doesn't extend to such a variety of Wank Words?

In my humble opinion, the NDIA's meaning for existence is to allow us all, regardless of our abilities, to live ordinary and fulfilling lives. Secondly, to support the participants' families and networks, all of whom spend countless hours of volunteering in an attempt to navigate this Brave New World.

What should the NDIA look like for Alex and our family? In the interests of keeping this post to a shorter length than a novel, I am resorting to dot points -

that Alex is the focus
that Alex has access to service providers that explain the NDIA/ NDIS and his individualised plan in language he can understand
that his family is supported and included as integral members of Alex's team
that his funding and his plan remains relevant to his needs and is adjusted accordingly.

So, what immediate improvements are I seeking?

that I receive all correspondence in relation to Alex's participation in the NDIA
that I am included in all aspects of decision making that support Alex's best interests
that I have access to the processes and can advocate on Alex's best interests
that the NDIA provide their correspondence in user friendly language
that the NDIA check (preferably face to face) that Alex understands all correspondence
that the NDIA cease drip feeding me information on their terms and provide me with full and frank answers to my questions
that the NDIA recognise Alex's life goals and fund accordingly
that the plan reviews and appeals become independent and transparent.

Alex has been a participant in the National Disability Insurance Scheme since October 2019. During the entirety of almost three years, Alex has not had a NDIS plan that works for him. He has had five separate Local Area Coordinators over this period, none of whom have been able to perform any meaningful tasks apart from data entry and woeful plan preparation. His excellent Support Coordinator, who acts as our conduit between Alex and the NDIA, is currently funded for sixteen hours a year. Think about that for a second. A young man with complex needs is supposed to be able to manage by communicating with his main support person for just over an hour a month.

He doesn't understand his Plan. He is having difficulty being reimbursed for his Transport Funding as he doesn't comprehend the required process. He often leaves NDIS correspondence on his kitchen table as he is not cognisant with the contents and descends into visual overload. Although he had finally received some specific funding for his core goal of establishing a drop in café in the future, he received no guidance concerning how, what or where he can use this funding. I was fortunate enough to be given the heads-up about microenterprises from my Autism guru, Mister Bob Johnson, so I have passed this information to Alex's support coordinator for initial consultation. With no thanks to the NDIA.

Yesterday, he received a phone call from the NDIA announcing that his latest plan review can commence. I took the opportunity to speak to the staff member. I will now receive all Alex's correspondence. I will be participating in the plan review. Alex was visibly relieved at my intervention

I intend to hold the NDIA to account until Alex's plan becomes clear in its outcomes, is relevant to his life goals and is able to be understood and altered as necessary.

The NDIA has to do better for the sake of our children. I need to know that Alex will be able to lead as ordinary a life as he chooses before I shuffle off the mortal coil.

Isn't that all we wish as parents?