About a year ago, I was granted access to the National Disability Insurance Scheme (NDIS). The plan I had worked on with several dedicated individuals aimed to be specifically tailored to my particular needs, and for the first time in a long time, I was finally able to experience and feel that I had some choice and control in my life. My NDIS plan covered a lot of areas that my Individual Support Package (ISP) did not, and made provision for assistive technology, transport, home modifications, with an envisaged array of support in other matters as well. In particular, the NDIS has given me greater choice and control through allowing me to be the primary manager of my funds. This way, I get to decide which support workers I hire to take on important roles such as academic support, social assistance and other flexible arrangements.
Whilst the NDIS has given me more choice and control in my life, reaching this outcome was not by any means an easy journey. In fact, it had been a long and arduous battle, as many of you reading this may already know. But throughout it all, I had been honest and frank in my dealings.
For what I have to say here, let me take you back to a little over eight years ago. In July 2011, I moved into a group home for people with high support needs. The move came about after being encouraged by various people – because the Department of Human Services, as it was then known, could not allocate the extra 3 hours per day that were necessary for me to work safely and productively during the day in my own residence.
At no stage was I told that by this move, I would subsequently experience a loss to my “way of life” in a personal and social sense. Those who were encouraging me to make this decision, not least those in charge of the facility in which I have subsequently found myself, did not raise with me this corresponding loss in autonomy. I am left with the impression that the “movers and the shakers” in disability care, those who are stakeholders in the disability care industry, seek to find an industrial and commercial solution that is cheap and safe, rather than one in which, via a flexible supporting regime, can provide the “client” with the support needed to maintain the good everyday things that have previously been a part of a life already under severe disability constraints.
I look back on the last eight and a half years and come to a sad conclusion. The burdens that have been created as a result of inadequate treatment, stereotypes, stigma, and disutilities at every level of the disability sector, have actively played a role in the subsequent fundamental loss of my choice and control.
This situation, had now been alleviated to a large extent by the introduction of the NDIS. Because now, I am able to hire my own support workers and the flow-on effect is that I am able to dedicate my time to the things that give my life meaning. However, experience with NDIS has also opened my eyes to the shortcomings in the system that diminish this choice and control.
What am I referring to? I look at the Supported Independent Living (or SIL) component of the NDIS. The explanation and understanding of its role is as follows:
Supported Independent Living (SIL) is help with and/or supervision of daily tasks to develop the skills of an individual to live as independently as possible. These are the supports provided to a participant in their home, regardless of property ownership, and can be in a shared or individual arrangement.
Assistance provided to a participant will be included as part of their plan depending on the level of support they require to live independently in the housing option of their choice.
Providers working with participants who require SIL supports in their plans can use the Provider SIL Pack to assist them in developing the necessary quote and supporting documentation.
However, I do not believe this is an accurate representation of what happens when the NDIS support comes through a “service provider”. The statement is a description of an NDIS hope but in such circumstances the SIL funding is really just a lump-sum of money regularly given to service providers, and it has, as it were, the NDIS participant’s name written on it. It is used entirely by the one service provider, and the way this money is used is not flexible at all – in fact, it cannot be broken up and distributed amongst alternative service providers chosen by the “client”.
So let me be clear here. I am discussing my personal experience with the SIL system. When formulating the NDIS plan last year, I was told that my service provider had to send the NDIA their SIL quote (which had to be carefully calculated and take into account my particular support needs) before they could finalise the plan. This took a long time. What was even more troubling to me, was how the service provider corresponded with the NDIA without consulting me. It took several months, and several emails and meetings before the service provider yielded, and handed over important documents that pertained to my care.
Additionally, my experience with the SIL system has disclosed an even bigger, and more worrying matter in recent months. In June of this year, my previous NDIS plan was set to expire. As a result, a planning meeting was held in April with the NDIA representative, myself and my support coordinator, to get my new plan underway. I thought the planning meeting went well. We had even discussed my grievances with the SIL quote, with which the NDIA representative was quite sympathetic. However, come June, my plan had expired and I had received no communication on this matter. For an entire month, I had to function without my NDIS plan which, in and of itself, was troubling enough.
But then, I was told by the NDIA representative that the reason my plan was taking so long to be finalised was due to the SIL quote which had not been handed in by my service provider. You can imagine my anger and distress at this, to have to wait anxiously for an entire month with no word on this matter, only to be told that my plan was held up because of the SIL.
To add more insult to the injury, my considered opinion is that the SIL funding has been grossly miscalculated. For my care, my service provider receives three times the amount I do in self-managed funds, only for me in terms of the care they give me to be treated in this very thoughtless manner.
Quite frankly, I do not believe the service provider should be paid such a large amount because I am a “customer” under its roof.
I have also come to believe that such SIL funding goes against the principles of the NDIS to provide choice and control. It became evident to me that this was the case, as I had made known my issues with this system at the second planning meeting. It seems that my voice has gone unheard. What am I to conclude from all this? Has there been collusion somewhere along the line? Is the NDIS able to deliver the kind of SIL it claims to deliver? I remain unconvinced.
I talk about social issues and disability in my book, 6 and a ½ Years on a Dunghill: Life in Specialist Disability Accommodation.
You can also order directly from me.
Many thanks to my friend and colleague Bruce Wearne, who has inspired me greatly in all my work and who has been my prolific ghost writer, my gratitude also extends to my phenomenal team of academic support workers. Firstly, team leader whose brilliance and courteous behavior has been a surmountable addition to my work, and additionally taking on the role as a ghost writer as well, Christina Irugalbandara whose work means so much to me. Daniella De Bruin whose brilliant and caring nature means so much to me. Also, Ikemi Ivara whose ability to command and control the situation with kindness. Lastly but definitely not least, Mercy Ndegwa who’s continually teaching me how to be a better person.