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My need and of course the needs of many other people with severe disabilities for the NDIS

By Peter Gibilisco - posted Friday, 2 December 2016


I look back on the last five years and come to a sad conclusion. For some considerable time, I have been losing control of my movements. But from July 2011 there has occurred a progressive loss of control that is potentially more fundamental than the biological loss of muscular power. It has not been physiological so much as social and personal. What am I referring to? July 2011, five years ago, was when I move into a group-home for people with high support needs.

The move came about after being encouraged by various people to enter this group home. This happened because the Department of Human Services, as it was then known, could not allocate an extra 3 hours per day that were necessary for me to work safely and productively during the day in my own residence.

At no stage was the kind of loss of control that I have subsequently experienced – in a personal and social sense – brought to my attention by those who were encouraging me to make this decision, not least those in charge of the facility in which I have subsequently found myself. The "movers and the shakers" in disability care, those who are stakeholders in the disability care industry, seek to find a solution that is cheap and safe, rather than one in which a flexible supporting regime can provide the resident with support that maintains the good things that have previously been a part of a life already constrained.

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But hopefully this is all only confirmation of how much better life could be under the National Disability Insurance Scheme (NDIS). The NDIS has a social platform that rests on the provision of control, social empowerment and understanding.

Please do not mistake the issue here. It has nothing to do with how my views might be perceived and is all about the individuality of persons living with disability. We are, after all, those who share a diverse humanity, and it may only be our physical or intellectual disability that separates us on some evaluations from a society's so-called norms. What I am concerned about is addressing situations that impede a person's control of life. I am wanting to look at theories that are capable of addressing the manner in which people's freedom is constrained. Disabled persons are only a special case of persons enduring such unrecognised social constraint.

The NDIS scheme is based on the view that control and choice about funding provided to people will be individually driven. This will mean an important shift in the power away from the government and service providers and into the hands of people with disabilities themselves and, of course, their families.

Self-managed funding gives the flexibility in the choice of support workers, negotiation of salary, as well as the hours and kind of work that needs to be undertaken. As hours of duty and pay rates become more flexible, this may be more attractive to support workers as well. As an Employer of your own support workers, you'll need to be familiar with a range of things, such as WorkCover and taxation laws. This can be complicated and may mean that you need to ensure you comply with legal, financial and human resource obligations as well as maintaining records about your employees.

The payments for the NDIS are based on three different support categories:

CORE – A support that enables a participant to complete activities of daily living and enables them to work towards their goals and meet their objectives.

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CAPITAL – An investment, such as assistive technologies, equipment and home or vehicle modifications, funding for capital costs (e.g. to pay for Specialist Disability Accommodation).

CAPACITY BUILDING - A support that enables a participant to build their independence and skills.

Therefore, a large amount of money is put into the training of disability professionals. But there is little credit given to the ability of people with disabilities, who often act in management roles, for the day-to-day management of their home-based support workers or the management of disability professionals. The people being served here are in fact the front line trainers.

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This lecture was given at the Summer Annual Foundation Forum 2016. A special thanks to Bruce Wearne, for his mastery of editing and helping to tweak my piece, and to Christina Irugalbandara for her excellence in academic support work.



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About the Author

Peter Gibilisco was diagnosed with the progressive neurological condition called Friedreich's Ataxia, at age 14. The disability has made his life painful and challenging. He rocks the boat substantially in the formation of needed attributes to succeed in life. For example, he successfully completed a PhD at the University of Melbourne, this was achieved late into the disability's progression. However, he still performs research with the university, as an honorary fellow. Please read about his new book The Politics of Disability.

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