This week one of MDA’s clients was in The Age discussing an issue and obstacle many of our clients face that we believe is just not good enough. The issue is essentially that our clients are being asked to prove they are disabled. Not only is this showing a serious lack of awareness, it is offensive and the burden it places on families, who are already dealing with hardship, is unnecessary and cruel.

The story in The Age focused one on particular client, but sadly his story is not rare.  This particular client has Duchenne Muscular Dystrophy and takes two hours each morning to get ready.  He is cared for by his mother and father, as he is almost fully paralysed, one of the devastating effects of Muscular Dystrophy.

Yet just last month, Centrelink suspended his disability support pension after his parents missed a deadline for a medical review proving their son was unable to work. Their son, who needs full time care, requires the permanent use of a wheelchair, has a ventilator on all night to breath and can only move his hands, fingers and sometimes his head if supported. Yes, this is the young man they have asked to prove why he is unable to work.

The response Human Services Minister Alan Tudge gave sums up the core issue. He said the review was designed to ensure the disability support pension was given to those who needed it. He further continued that our client was granted the pension before changes to assessment in 2012, and his records did not show he had manifest disability. He went on to lay blame on our clients parents, stating that they were sent a letter asking for written confirmation of his disability, which was ignored. This letter was not ignored, it was never received. It is the government’s lack of understanding and awareness of Muscular Dystrophy that lead to this situation and the fault lies with no one else.

A further example of this is my son Ryan’s constant battle to prove his need for a disabled parking permit. Every year Ryan had to prove he still had a disability to retain the permit. Muscular Dystrophy is a progressive, degenerative disorder, Ryan is not getting any better; he is getting worse. After approaching the council we requested the yearly checks cease due to Ryan’s condition, and they have.

It is this approach we at MDA believe needs to be taken with the disability support pension. There are many disorders, just like Muscular Dystrophy, in which sadly the person affected is not getting any better. The burden of this is already enough; do not trouble the person living with the disorder or their family any further. Create a category of disorders that don’t need follow up, review, or proof for any reason.

This story brings a large amount of frustration to the MDA team as it has landed at a time when many of our clients are struggling with another government-run disability initiative, the NDIS. Touted by many as the TAC for disabilities, it is far from this.

When it comes to greater support, it seems the goal posts keep shifting depending on how hard a family pushes and it shouldn’t be this way. It is fantastic that we now have several families who have received significant individual support packages, despite the fact that their child is outside the region of the NDIS, so why can’t it work like that for all families with urgent needs?

Ryan is in need of a new wheelchair and significant in-home support as my family is at breaking point. I’m still able to run the MDA and provide support to our MD community; however I have been advised we will have to wait two more years before NDIS comes to our region. Exemptions have been made for those who have been described as having “urgent and pressing needs,” but in the case of Muscular Dystrophy, almost all cases are urgent and pressing.

“I believe my level of support would have been significantly greater had I been in a motor vehicle accident and covered by TAC,” said Ryan. “Our family circumstances are heading to beyond breaking point and our needs are urgent and pressing, yet  we have been told we have to wait another two years; it really is not good enough,” Ryan concluded.

The main area of grief for our clients is the roll-out process. It is being treated in an administrative manner and put simply this is wrong. This is not a situation where people can just ‘sit tight’ and wait for it to be rolled-out in their region, people need help, assistance, support, equipment and they need it now.

We have one client who was recently told they are in a region that will not receive anything from the NDIS until 2018. When the clients’ mother called DHS to find out how to get support in the meantime, mainly needing a case manager to help access funding for a wheelchair, she was told case managers don’t assist with this type of scenario anymore, as it’s all covered under the NDIS. But I won’t be getting the NDIS for another 18 month is what the mum responded, too bad is essentially the response she received. Left in a limbo between receiving the NDIS in 18 months and having access to limited support in between, is where many of our clients are finding themselves.

On the flip side, another of our clients living with Muscular Dystrophy is also outside the region of current NDIS and would have been waiting many months for support. However, after many months of tirelessly pushing and campaigning, the family was able to get their son on NDIS support early. Although the government wants to neatly roll this out, it needs to consider special cases such as these discussed, as there truly are people and families who just cannot wait.

Finally to end, I invite the Disability Services Commissioner Laurie Harkin to conduct a comparison of one receiving NDIS funding and another in a similar physical and family circumstance receiving funding through TAC.

I am confident that I would not be surprised at what this exercise reveals; the NDIS will fall far behind in comparison to TAC support.


Boris M Struk

Executive Director