Submission to the Inquiry into the National Disability Insurance Scheme Bill 2012

From: To: Community Affairs, Committee (SEN); Subject: Submission to the Inquiry into the National Disability Insurance Scheme Bill 2012 Date: Tuesday, 22 January 2013 10:20:28 AM

Please consider this email a formal submission by me to the Senate Standing Committee on Community Affairs Inquiry into the National Disability Insurance Scheme Bill 2012.

The current disability system has many problems that need to be addressed.

Over the past 33 years we have needed to work with the disability systems of the times. Those systems have been less than ideal; even though very slow inroads to improve the system have and are being made.

There were no options available to us for engaging any support networks that would enable us to keep our son from needing to move from the family home into less than ideal accommodation situations; mainly because of his high support needs. The high costs of his care (arising within the first four years of our marriage– together with the addition of another child fifteen months older) placed financial, imotional and physical pressure on all of us; I was unable to go back to work, as planned, being the only carer 24/7, while my husband needed to take on as much overtime and a second job to alleviate the financial pressure.

No-one knows what future is in store for them and the best laid plans can be turned up-side-down in an instant. One’s whole world changes.

We did not have extended family or friends that could assist us for various reasons, for example: relatives were too elderly; other families were in other states; and most family and friends were starting their own families. So, aside from the complex needs of our own family, the whole of the family environment needed consideration.

We are now entering our final stages of life and our son is currently in a group home and has been settled for the past 22 years after much hard work, anxiety, avocating and upheavals. We are grateful for him being able to have this opportunity but, it still doesn’t take the place of all the years missed in being able to provide for him ourselves. Often, we have come across carers and staff who do not understand the systems we have come through and try to place ‘guilt’ on our shoulders for having placed him into care. One can only choose an option when two or more options are offered; when there are no options, there is no choice.

The current system, as it stands, does not provide adequate access to options for those with high support needs; however, what it has provided our son with at this point in his life is adequate. He is more frail and ageing and his well-being and contentment is more important at this stage than disrupting a life he is used to and with companions he has lived with for the past 22 years. Had the instigation of a much better supported system been available then our lives may have been entirely different.

It is right that the current disability system needs to be changed.

The main features of the NDIS that will make a difference to the community are:

• Ensure support and equipment is available when needed, The ability to receive

Support for NDIS

services when needed and in the way that suits the person, Older parents and families will not worry what happens when they can no longer provide support

The most important services for the NDIS to provide are:

• Equipment and home/vehicle modifications,
• Accommodation options,
• Crisis and emergency support

I support the introduction of the NDIS.

I do support the National Disability Insurance Scheme because every person with a disability has the right to choose what happens to them and what happens in their life.

to individualise the needs of a person with a disability to enable the person to live their life as fully as possible and to be totally inclusive within their community, and society in general; this can only be the right thing.

A major concern I have is: Those persons with limited capacity to make their own decisions should not be disadvantaged, in any way, by the scheme because of the necessity of needing the ongoing support of family or advocates; very careful consideration needs to be given to those who provide that support because of any perceptions, by others, that may ensue, as to the decisions being made on the person’s behalf. Often those with limited capacity are put in the ‘two hard basket’; this is a much bigger issue sometimes than most people realise when life decisions need to be made. Unless very careful assessment of how a person with a disability is currently supported then decisions being made by others, who are often transient assessors, may be detrimental rather than beneficial in the long term.

Overall, and in principle, the National Disability Insurance Scheme is a long time coming. It requires full and ongoing guaranteed funding from whichever government is in power. If there is any weakness in the Scheme such as: no contingency plans should any part of the funding fall through, then people with a disability, their families/carers, will find themselves in very dire situations and worse off than ever.

I agree for my submission to be made public

Regards, Mrs Janet Baker