Father with Huntington’s disease denied NDIS support

Photo by Louisa Rebgetz/ABC News: Brett Kelly and sons Daniel and Liam
Contributed by Adam Carlton

The story of Brett Kelly, a 46-year-old former Brisbane security guard and father of three, with terminal Huntington’s disease, should move the most unfeeling of us. But it is the treatment he has received over his application for National Disability Insurance Scheme (NDIS) support that should make our blood boil.

Brett suffers from continuous involuntary movements, cognitive issues, tremors, depression, and anxiety, and his symptoms will become more pronounced, over the little time he has left. He is no longer Capable of working, and his three children have a 50 percent chance of developing the same illness. Brett has a lot to deal with.

He now survives on Newstart and this forces him to attend regular job interviews and carry out other mandated obligations, despite the difficulties he faces.

Letters he has received in relation to his application have told him, that he does not meet the criteria to get the support pension. He is appealing against the decision.

Huntington’s Queensland CEO Jan Samuels said it was a devastating illness for sufferers.

“It’s often described as being a cross between dementia, Parkinson’s disease and motor neurone disease all at once, so it’s a pretty nasty condition.”

The sticking point is that an application for NDIS help is dependent on the criteria established through Centrelink. A disability is measured up against an inflexible table, designed around percentage application of parts of the body, the level of cognitive capacity and and ability to carry out daily self care needs. In effect, those whose condition effects the whole body and not concentrated in specific parts are at a disadvantage. Decisions on whether to give or deny support are not made based on capacity to work.

It is a system designed to exclude as many people as possible, and Brett Kelly is only one of the human faces of the discrimination and suffering it causes, showing the callous side of government policy.

People are hurt, when the government is enmeshed in an ongoing war to dismantle the welfare system. The first step in doing this, is to transform what was once considered a basic right, into a form of charity.  This is but a short step from here, to spread the assumption that most of those who come for help are malingerers. It justifies the cruel outcomes that occur, when people are presumed guilty until they prove they are innocent. Even then, many are still miss out.

Australia has gone through this progression.

According to a statement from Department of Human Services general manager Hank Jongen, 70 percent of applicants for disability support are accepted and less than 20 percent of appeals overturn the original decision. When you consider that there are 100,000 applicants a year, a lot of people are being affected.

The NDIS was supposed to be a more efficient and fairer way to help those in need, if one believes the government spin. But cases like Brett’s, show that it is really a continuation down the same road.

This road assumes that as a society, we do not have a responsibility to care for the less fortunate among us. We must ask ourselves. Is this the Australia that we Want? If it is not, how much longer are we going to allow this to continue?


1 Comment on "Father with Huntington’s disease denied NDIS support"

  1. Anne McMenamin | August 6, 2018 at 3:32 pm | Reply

    This is appalling – how low has Australia sunk?! Huntindon’s is the most dreadful disease. There should be no question of not getting a disability pension.

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