Independent Assessments

Submission 169

Hello Members of the Committee You have an awesome task and responsibility put before you: to make recommendations that enhance the lives of “challenged people” with appropriate support, and equally to support the people who support them, whether they be carers, family or agencies, and to do that within an economic framework that demands accountability. Many challenged people can be heroic in their aspirations and achievements, typified by an attribution to Stevie Wonder “Just because a man lacks the use of his eyes doesn’t mean he lacks vision.” Their doughty determination must not be construed as a justification for a blind policy of forced self-help. No matter how courageous they are, they need some help, and so do the helpers. For the casual reader like me the media seems to be alerting us to an agenda that would have Economics trump humanity and equity. It is from that perspective that I write, referencing my own family experience.

My brother was born in 1942 with extreme Downs Syndrome, the eighth child in the family. We lived in a small country town; my parents separated, and we all lived with our mother. In those days there was no support for, and no knowledge of this kind of disability. All the family contributed their time and money to look after our brother, and they did this for 63 years. He lived a happy life in a happy family. However, the emotional cost was enormous. As a couple of the family married, it was left to the rest to carry the flag. Two others married in their mid-50s. A sister married, and she and her husband and one brother who never married, dedicated their lives, in between jobs, as carers of a sick mother and disabled brother. For all those years it was friends and neighbours who helped out on occasions; it was only from the 1990s that they got a Carer’s pension as additional support. An enlightened group of social workers opened a “school” called The Coachhouse in Mosman, and for 13 years my young brother became a pupil for one day a week, which was also respite care for the family.The Coachhouse did a wonderful job for many years, but lost their funding, and closed, as I understand it.

This brings me to a central point. The only people able to offer proper advice and medication were doctors, nurses and professional social workers. They were the ones that ultimately made it possible for my family to do what they did. And that is how it should be. Now this policy of NDIS ought to enshrine the exclusive role of appropriate professionals in the assessment of a person’s needs, which includes the needs of their helpers. I taught management at University for 20 years, and the trend in successful management was to “focus on the customer and their needs and desires”. The NDIS is especially an organisation for whom it is crucial to adopt that approach, with right knowledge, right understanding by the right professionals in the relevant field of the disability being assessed. Do not let this inspired policy of NDIS become just another political football in the argument about “taxpayers’ dollars”. We want a society with an economy, and that economy is strengthened by all the businesses, both private and governmental that provide services for the aged and disabled. It is growth, ot just a cost. Yours, Peter Mansour-Nahra PhD, STL.