I love the NDIS, I really do! It is the best thing that has happened for people with a disability. It was built on principles of simple human rights. A recognition that people with a disability had a right to be fully included in society. A recognition that in doing so society also benefits. Invest and you shall reap. Our Treasurer, about to embark on a stimulus package because of our sick coronavirus infected economy, might want to have a deep think about this. Imagine how much stimulus could happen if Australia properly invested in making all of its infrastructure accessible so that people with a disability could access it any time and any place.

But as much as I love the NDIS I also hate it. It frustrates me that this visionary concept was so screwed up by bureaucrats with no clue. Instead of seeing the NDIS as a model of human rights that benefits everyone the bureaucrats have seen it, as they are trained to do, as a cost. So instead of people with a disability being valued and seen as an asset they are once again seen as a cost and a burden. The narrowness of this thought process makes me scream. Not want to scream, actually scream.

I am no longer in the NDIS space. I have since moved on to a wonderful job that I enjoy immensely. Even so the NDIS is never far away. In my own time I assist people who contact me to deal with the NDIS. I do this because these people have no help. They ask me to help with a whole host of things. requests for reviews, challenging decisions, dealing with access request forms, setting their goals and sometimes just lending them my eyes so that they can vent about their immense frustrations in dealing with the system.

You know there are great people in the NDIS. They know they system is shit. They provide me with leads and contacts. Take it from me, the NDIS and LAC program is full of good people, with good intensions and who are restrained by bureaucrats and leaders who have no clue. Who are restrained by a Government more interested in restricting spending than designing a system that truly invests. Ask yourself this question; since the NDIS started how much more accessible has your local community become so that people can properly utilise the funds they have received from the NDIS? – How much capacity building in your community has actually happened? I bet most of you are hard pressed to know.

Obviously, because I am deaf, Deaf and hard of hearing people approach me regularly for advice. But I have others who ask for help to including professionals. So in this last few weeks I have:

1. Been appointed as an advocate for a deaf person with bilateral cochlear implants who got one of the worst plans I have ever seen.
2. Met with her LAC
3. Prepared her complaint to partner organisation and NDIS
4. Had the NDIS initiate her review with a promise of a quick resolution ( I laughed when they said that, but they may surprise me.)
5. Assisted prepare a response because yet another family were denied Auslan in the home. Because sign language development, according to some in the NDIS, is responsibility of the school. (Scream with me.)
6. Discussed with key disability organisations how to assist families who cannot understand the decisions of the NDIS nor implement their plans.
7. Discussed with key disability service providers how we can help families and individuals get past the access process because they can’t understand how to request access. If they do get the Access Request Form, many don’t not have the literacy nor understanding  to  get the request form into the system.

Just to remind you. I don’t get paid for this shit!

You know, I even applied myself. After working in the NDIS space for four years I decided to apply myself. I went online, answered their access questions, went through the steps and finally they acknowledged that I probably meet access and told me to call the 1300 number. I looked all over the page to see if there was another option for people with communication issues or hearing loss and their were none. No online text chat feature (They have a robot one that is apparently hilarious,) There is no email. There is nothing except the phone number. This is the NDIS. Australia’s premier disability support program, hardly accessible itself.

The website thus us that, ” If you need help filling in the form or making the call, you can contact your Local Area Coordinator, Early Childhood Early Intervention partner or your contact your local NDIA office.” GREEEAAAAT, perhaps not. You see the organisation I worked for could only help you fill in the front page. We would then give them the form and tell them to go see their Doctor and provide all the evidence required to meet access. This was because the organisation didn’t want any legal responsibility for the application or to get blame if all went arse up.

I am told from reliable sources that there are some LAC organisations that won’t deal with access requests at all. Apparently, if you have a disability and walk into the office or call them they ask if you have an NDIS number. If you do not have an NDIS number they send you away and say come back when you have one. When challenged they say they are unable to assist with access requests forms and only assist once a person has been allocated an NDIS number.

The NDIS website says to go in. You go in and some won’t help until you have a number. You can’t get a number until you meet access. You can’t meet access until you send in your form. If you can’t understand the form or the process what do you do? If the LAC organisation won’t help who does?

Apparently some disability organisations might be able to assist but not everyone fits within their remit. There are advocacy groups that help with appeals but they are not funded to help with dealing with the access steps. What happens if upon don’t live near a LAC  or NDIS office? What happens if you are immobile and can’t get out and about much because – You need the NDIS funding to do that? What happens if you are from a CALD background and, god forbid, can’t even read what’s on the website. What happens if you have an intellectual disability and literacy issues and no support? Well for many you are just simply fucked. There are many, many people in this boat!

And that is the system we are dealing with. Australia’s premier disability program virtually in accessible for many right at the entry point. Don’t get me started about plan implementation for those that actually have a plan … That’s a novel in the waiting!

Feel free to scream with me.  Common NDIS, you have to do better. Make your system accessible!

PS: For the record, I rang the 1300 number for an access request form. I was promised one in 14 days. Four weeks later I am still waiting!