Annette Bush

netty58@gmail.com

Person with disability

I am a parent of a young man with a disability who currently attends our local high school in the main stream, that is, not in a segregated setting in a support unit or a special school. I have read the National Disability Advocacy Framework and can see that it does have key principles, outcomes and outputs that if abided by will improve the lives of people with a disability.
Having a person centred approach to supporting a person with a disability is a statement I am hearing more and more as the NDIS has become a reality for many families. What I am seeing though is that people with a disability and the families supporting them are still being offered much the same as they always have before the NDIS under the label of ‘choice and control’. Many services still have the ‘choice and control’ over what they advise families and the person with a disability. The old model of ‘buying a life’ in a day program is a far cry from what is being suggested in your framework, especially for those people with a disability who have to rely on their families to make those choices for them because of their support needs.
I have been affiliated with Family Advocacy in NSW for over 10 years now and have seen some changes to attitudes in society simply because parents want something far different to what has been done in the past, especially in the education sector. My husband and I have personally benefited from engaging with Family Advocacy because they have enabled us to speak up for our son to have a meaningful life full of learning opportunities that will enable him to be part of our community which I believe is the intention and principles behind your wanting to improve disability advocacy. Your National Disability Advocacy Framework is the structure but people and their attitudes and personal beliefs are what adorn the structure. There has to be organisations like Family Advocacy to ensure that people with a disability don’t continue to face the vulnerabilities, segregation and low expectations even though they now will have more opportunities to change their lives through the NDIS. Families are a strong force for advocacy if they are given the tools to act in behalf of their person with a disability with full knowledge of all the possibilities.
I live in a small regional area and I do see that we are disadvantaged to a large degree because of the distance we live from the city. Family Advocacy with the funding they receive now do get to regional areas but nowhere near enough to be able to help the amount of families that would benefit from workshops and events. The other issue is disseminating the information that an event is happening in an area, services are not reliable in giving out the information to parents that would attend these events if they actually were informed.
I see Family Advocacy being an integral part of the structure of the Disability Advocacy Framework you are proposing to enable parents to navigate the system that is now being presented to them so that they are able to see the possibilities and ensure that the support being given is person centred with choice and control for a good life.