There has been a lot of very hard won advancements in the way people with a disability are treated since the Disability Discrimination Act came into being way back in 1992. I remember the buzz in the room in which I was present as the main points were read to those of us with vested interests. It became the basis for articles I wrote in our local paper all those years ago, and I guess it was the catalyst for why I still write about disability, dignity, and common sense. It was also the catalyst that sent me on a journey as a mature age student, to gain my degree majoring in psychology, and another in sociology. It has become yet again, the catalyst for the struggle to find common sense in the quagmire of rules and regulations that make up the National Disability Insurance Scheme.

As the parent of a son with cerebral palsy, for the entirety of my adult life, I celebrated the courage of those early mavericks who sat in their wheelchairs demanding the right to be able to get on a bus, find a toilet they could use in public places, even go into a building via ramp and not stairs.

I remember well going to a public government building with my son and finding the only toilet was on the first floor. And the time I was phoned by the Police to inform me Rob was going through the drive through at a particular restaurant because he couldn’t get through the door. At the time he argued fiercely for his right to be served, saying if he couldn’t enter the building he would go around the back. Rob won that argument and the doors were altered. In fact it was my sons’ stance that saw me sit on a committee for access and inclusion writing articles educating the community on that topic. In reality it is my son who has been driving me as an advocate, not me willingly taking on that role.

Education took a turn for the better with special needs kids gaining support in order to attend regular schools. Yes things were looking up by the early 2000s and it was mostly down to the constant hard work of those who knew without a doubt they deserved the same rights and respect as others, and their ever supportive advocates, parents and friends.

For all of us with long memories I don’t need to say that life didn’t suddenly become easy. But it did become more negotiable. Doors weren’t shut quite as tightly, and a glimmer of hope slowly became a cascade of possibilities. People living with disabilities started to see a future in pursuing goals they previously thought out of reach.

I won’t even name a few of the many incredible sporting and academic role models that grace our screens on a regular basis, as it focuses on prominent athletes mostly. There are many many productive and inspiring people with disabilities doing incredible things in our community these days. Yes those early mavericks who agitated for recognition and rights have left a truly valuable legacy.

So it was against the background of the evolution of disability rights above, the advancements, the dignity of inclusion, and a big sigh of relief, that I as a parent and full time carer, waited in anticipation for the roll out of the NDIS. National Disability Insurance Scheme. My son could finally feel he had some choice in the carers who came to shower and dress him. He could seek the meager part time work he hoped to find to raise his self esteem. And he could gain some confidence in service providers he had long ago lost trust in. It hasn’t quite worked out the way we would have hoped.

On the one hand tangible physical assistance in the form of modifications, orthotics, and repairs to wheelchairs etc, are improved to some extent. I couldn’t be more happy with the assistance he is receiving in those areas. Nothing moves quickly, but it is moving much more quickly than before the NDIS. Professional service providers such at podiatrists, physiotherapists, and orthotists can be chosen by the recipient and engaged easily.

Things for us seemed to be looking up, but it was a mirage, a shadow of hope cast across a chasm of loopholes that would threaten to suck that flush of possibility from Rob before it had changed his life in the way it was sold. The ability and right to have control over his future, choices, opportunities to grow, happiness and self esteem. I wouldn’t be writing this if it was an isolated issue. I have the knowledge and ability to be able to find common ground and sort most issues out. I have advocated on behalf of others and helped them find solutions, and I have always done my best to stay informed.

There are a lot like me, but there are many hundreds and thousands of carers who are at a complete loss as to how to get through the maze, find someone to speak to, or solve their issues. If I have reached a point of utter frustration with my knowledge, I fear for the mental health of caregivers who have pinned their hopes on progress.

Mental Health is in the news frequently in relation to sports people, teens, and police for instance. They all have difficulties dealing with life and the stress put upon them. Caregivers however deal with 24/7 stress that wraps itself around two lives at least, and often the whole family. It isn’t a focus of news programs and magazine articles though for a simple reason. Caregivers don’t usually complain. You don’t hear from them publicly all that often. Not because they don’t have issues, but because they are too busy just getting through the day. They just want to fit in, and publicly complaining doesn’t allow that.

There is also the consideration that complaining and agitating has the potential to cause the person they care for to feel guilt, or sadness, believing they are the cause of stress. So we suck it up and quietly go about our daily grind in silence. I personally feel as if my son has been sold the adult version of the tooth fairy. A false hope tangled in rules and regulations administered by people employed with little care, and even less training in many instances.

The examples are out there in many homes, and caregivers everywhere have at least one story, and it is time to put those stories together in light of the Disability Royal Commission. I have several serious examples myself, but the most glaring highlights the incompetence of some employed as contact personnel.

When Robs NDIS funding was approved, there was a fault in the final document. How his management was to be done, and his request to engage his own carers, was not specified. Seemed easy enough to address and as his nominee I made a call. Details were taken to make sure I was who I said. Eventually the same call was made over and over again in the coming weeks. Always the same details taken. I was finally directed to an office an hour away to discuss in person. It turned out the personal details I was asked for each week, were incorrectly entered on their end, found to be incorrect on every phone call, and never fixed. My time was wasted with platitudes, and never addressed. And that was just the beginning of our journey.

I have always believed that honest, open, communication, including sharing of possible solutions, in a respectful way, promotes the opportunity to fix problems and make changes that can help improve and evolve all areas of life. In short the fostering of common sense in the way we deal with each other. Unfortunately I haven’t been able to make that work with the issues my son has been dealing with, and it finally made me face a sad reality.

Rob is being discriminated against on the grounds of a disability he does not in fact have. He is perfectly capable of making decisions and thinking for himself, but the perception around his physical challenges plays out in some kind of given, that if the body isn’t working well, the mind isn’t either. He has been under the impression he would have the right to choose the services and carers he feels comfortable with, when in reality that has not been the case. Only recently one large provider told him, the lady who does the roster will assign the carer. I expect there will be those in higher places who will refute that last statement in defense of stated claims to the contrary, but real experience paints a different story.

There are many problems with the NDIS that need ironing out. We have a lot of very strong advocacy groups and individuals working hard to improve many aspects, and this has culminated in the Royal Commission and calls for submissions from people like you and I.

As I said earlier, most of us just work to get through the day, hoping changes will come slowly and steadily. We are really leaving the future of the person we care for, and ourselves in fact, in the hands of just a few. These few, who are working so hard on our behalf, need some assistance. If you nodded your head in agreement at the one or two points I have made, there is a fair chance you have a story of your own. I expect every carer out there has a story that should be told. Telling it is difficult though, because in many cases it brings up pain. When you gain confidence in the knowledge you are joining with others to make a difference, that pain will morph into a feeling of satisfaction knowing that your words might make someone else’s life easier.

I urge everyone to tell their story in the easiest way I could find. Forget the long forms or phone calls put on hold. Just write one email with one story of fact and send it to the below address. If a dozen people write an email it might be a trickle, but if a flood of emails come in it is a united movement for change. Think about the minority groups out there, all being heard because they agitate for change. The caregivers in Australia encompass all those minority groups. In some cases the people we care for also suffer gender discrimination, racial discrimination, and more. I am offended my son is discriminated against for a disability he doesn’t in fact have. The ability to think for himself and that goes way beyond his inability to walk.