Caring for a profoundly disabled daughter and lack of consultation

From: To: Community Affairs, Committee (SEN); Subject: sun875Submission to the Inquiry into the National Disability Insurance Scheme Bill 2012 Date: Thursday, 17 January 2013 12:30:28 PM

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.

  1. Too much ‘middle management’

  2. Lack of funding to meet requirements

  3. Lack of respite

  4. Most importantly - am very tired of those who ‘know’ what we need! In all of my 25 years of caring for a profoundly disabled daughter, not once have I ever been asked the imperative question ‘what is it you need to be able to care for your daughter at home and what do you see as your requirements into the future’. In short a serious lack of consultation with stake holders.

  5. Unhappy with ‘forums’ and ‘information sessions’, particularly with regard to the upcoming NDIS. To improve the lives of disabled people and their carers the personal qualitative approach should be employed. At a forum or any group meeting it is very difficult for some to get their point across - there are some people who are shy, some who are not articulate or a dominator/s who is off putting for others.

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 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:

Therapy and allied health services, Equipment and home/vehicle modifications, Support for families and carers

I support the introduction of the NDIS.

It is hoped that the NDIS will provide a ‘new world’ for our disabled, for improvements in all aspects of their lives and the lives of their carers. This task will be mammoth as no one size fits all, however it is imperative to get it right.

This scheme will hopefully be embraced by the wider community, who need to know they too be covered should disability affect them in their lifetime.

I agree for my submission to be made public

Regards,

Ms Glenda Scaddan