I believe we need a lot of conversations about how to make sure the NDIS does deliver what we all hope it does. These conversations need to involve Service Providers listening to the experiences of people with disabilities and the carers (not support workers) and start considering how they, the service providers can do better.
I am writing specifically about adult children, so what I am saying does not necessarily apply to children who are legal minors ie under 18 years.
The NDIS is being rolled out across the country and bringing with it the challenge for all of society to revisit their understanding and ideas about people with disabilities, including people with intellectual and cognitive impairments, and people with sensory processing differences. Indeed it will be necessary for all of society to think about impairment and disability in new and evolving ways.
For years parents of people with complex and or severe impairments have been made responsible for every decision of their adult children from what their child will wear, what they will eat, to many more complex issues of housing arrangements, support arrangements, financial arrangements, and the complexity of planning for the day when the parents are dead and buried.
If at this point you doubt that parents are made responsible for all of this decision making spend half an hour at any Service Providers pick up and drop off point and just listen. "What would you like XXX to do today...?" "We could not get XXX to YYYY, what do you think we should do?" and this starts way back in early intervention days before school and just increases over the years.
A communication device is only useful if the staff of any Service Provider you'd like to think of are willing to actually take notice of the communication device and seriously if your offspring need assistance to use their communication device, just forget it, because "We aren't trained in being a communication partner." Which is a nice way of saying "No we can't be bothered finding out what your offspring actually wants because that might conflict with what we have planned for the day, which is inevitably what they have convinced parents is best for their offspring and have wheedled at least a cursory 'permission' from the parent."
The NDIS is about choice and control for the individual person with disabilities.
Now parents are being told, "No. What you say is not good enough we want to know what does your offspring say."
What of the parents who are told by service providers. "It is okay. You can leave it all up to us. Just sign here, and here, and here." A very real temptation for parents who have been tired for more years than they care to remember, and are facing imminent ill-health and ageing issues for themselves.
Where does this leave the offspring? Who have next to no experience of decision making and or communication impairments that require others to take the time to get to know them and their unique nuances and understand the importance of being a good communication partner to be enable them to make their choice known.
This has to happen in an atmosphere of low expectation, the ever present self-fulfilling prophecy that permeates all aspects of life for people with complex and severe disability and their carers, and while taking care as best we can of all of the day to day needs and somehow finding time for the many administrative duties involved.
The question arises for me, as it does for many parents, where do we find these mythical creatures generally known as informal supports? Family? They are long gone. Friends? Who has time to build and maintain friendships? The community perhaps? No one in our street, let alone our broader community would know if anyone in our house was dead or alive, not exactly the stuff support is made from.
So while society is being told, make some changes, adjust the way you think, the parents of people with severe and complex disability are being foisted into the frontline and being told, you be the change, you show us the way, come on we are looking to you to lead us. And in many instances, we just can't.
You see we have seen it before. We have seen the 'new wave' a few times over the decades we have been doing this parenting gig, it always presents itself as innovative, best practice, the way forward, and truly a new way for your offspring to have a bigger, better life.
The first time this happened we were all bright-eyed and bushy-tailed and off at a trot with this new wave of concepts and thinking and we are really excited and we lead the way without so much as a hint that we should.
Then over time we find this new wave gets policed away, inch by inch until instead of a giant new wave our offspring have been left with a ripple on the pond.
The second time this happened we were a bit more reticent but persistence from others in proving how great this new new-wave would be eventually won us over and we were out there leading the way, jumping hoops, and skipping as we walked because we knew this was the answer we had hoped for before and lost.
Then over time we find this new new-wave too gets policied away, inch by inch and become little more than the ripple we had before.
Now we are tired. Exhausted and older, with illness creeping in and our hearts are sick with worry, our heads do the freeze thing for us because we are pretty much all out of fight or flight and we can not let ourselves imagine that this too will not get policied away to a ripple.
And, yet, we must stir ourselves up and try. Our off-springs' lives depends on it. The certainty of our death is nearer and the fact our offspring must be in a position to cope without us grows heavy in our hearts because long experience has told us others will not know or particularly care that s/he can do this or that, and prefers this kind of music or that, likes vegemite on toast and tea for morning tea and doesn't like this or that pattern on material. and when we are gone that will be gone.
So, here we are with the latest new-new-new-wave at our doorstep. And we smile as we open the door and we ask ourselves just what will this new-new-wave demand of us? Do we have that left in store? Will life get better for our offspring? For us?
We are told it is okay. It is not about you. We are going to make sure your offspring gets choice and control in their life and everything will be better. and they look at us and wonder why we are not so excited as they think we ought to be. They wonder why we are not rejoicing. And as we shuffle another pile of paper and stare another wave in the face we know, in our deepest place of knowing, this could be good, could be very good, for society, for everyone, if only we could just go out and drown the policy makers who will drag the wave down a cul-de-sac and quietly throttle the life out of it and leave us with but a ripple of what should have been, again.
Rose Quartz: Copyright CR McDonnell 18/05/2016First Printed NDIS Grassroots Discussion https://www.facebook.com/groups/239631286154106/