Anonymous

Which of the following statements best describes you?

• I’m a parent / guardian or other family member of a person with disability

Question 1:
During the first stage of consultations we heard that the vision and the six outcome areas under the current Strategy are still the right ones. Do you have any comments on the vision and outcome areas being proposed for the new Strategy?

I support the suggested vision. In particular I think inclusive and accessible communities needs greater focus in the next Strategy. In particular broad community awareness of disability from a rights based perspective. Greater awareness raising of disability issues is needed at schools, similar to current efforts in terms of raising awareness of LGBTI issues. This is required to promote respectful, positive, inclusive attitudes to diversity and people with disability and their families. The launch of the next disability strategy would be a perfect opportunity to develop learning packages/ modules for schools.

Question 2:
What do you think about the guiding principles proposed here?

There needs to be a focus on meeting the needs of people with complex and often multiple disabilities and ensuring that their needs and voices are considered. This could be more specifically addressed under “involve and engage” …eg. by adopting strategies to involve those with more complex disabilities including by reaching out to families/ carers” If the focus is just on people with disabilities those who find it difficult to articulate their needs such as my son with intellectual disability and autism may not be included.

Including a focus on carers and supporters is also very important in its own right to ensure they can sustainability support their family member with disability. In particular there is a lack of services for siblings. My daughter has a lot of anxiety about her role as future carer for my son and currently there is little support to assist with this. If you strengthen capacities of families you improve the lives of people with disabilities now and in the future.

Question 3:
What is your view on the proposal for the new Strategy to have a stronger emphasis on improving community attitudes across all outcome areas?

This is absolutely critical as per my previous feedback. Emphasis needs to be put on people with disability as members of community and that everyone has a role in making people feel included. Taking the initiative to include people with disability and their families is critical to well being. Currently the overriding attitude is that this is a ‘family’ issue. Generally I find people are pleasant to my son but few go the extra mile and take the initiative to actively talk to him or include him and he is often not invited to events which is hurtful. When people do it makes such a difference. Improving community attitudes also relies on families and people with disabilities being supported to be able to access the community – for my son having regular caring support through NDIS enables this to happen and supports us to participate in community events with support.

Question 4:
How do you think that clearly outlining what each government is responsible for could make it easier for people with disability to access the supports and services they need?

Yes but often needs traverse levels of government, ie. therapy (funded by NDIS – Commonwealth), which may be provided in a school setting (education – State). The overriding principle should be meeting the needs of the individual in a seamless, coordinated way. Clear roles and responsibilities are important so that needs don’t fall between cracks but also with an overriding principle of working together across departments/ governments to provide people-centred support.

Question 5:
How do you think the Strategy should represent the role that the non-government sector plays in improving outcomes for people with disability?

Yes – no further comment.

Question 6:
What kind of information on the Strategy’s progress should governments make available to the public and how often should this information be made available?

Annual reporting is important to keep governments accountable with a focus on activities. Measuring outcomes data will need a longer time frame – maybe 5 and 10 years to really track meaningful progress.

Question 7:
What do you think of the proposal to have Targeted Action Plans that focus on making improvements in specific areas within a defined period of time (for example within one, two or three years)?

Yes.

Greater awareness raising in schools should be a specific topic with a national approach, adjusted state by state.

Question 8:
How could the proposed Engagement Plan ensure people with disability, and the disability community, are involved in the delivery and monitoring of the next Strategy?

As mentioned earlier it is critical that specific measures are made to reach and include those with more complex disabilities and their families.

Question 9:
Is there anything else you would like to share about the ideas and proposals in the position paper?

Agree with idea in paper around more awareness of strategy needed. There needs to be greater community outreach that excites people with a vision of a more inclusive Australia where everyone can play part in improving the lives of people with disabilities and their carers. It needs to come from the premise that every family is likely to experience disability at some stage and that everyone has a role to play in being more inclusive. This means checking on neighbours with disability, adjusting events so that people with disabilities and their families can participate. How we talk about people with disability and the language we uses matters. As said previously this needs to start at schools where attitudes are often formed and the self images of people with disabilities are made. I am really concerned about examples of children with disabilities being bullied. I am also concerned that my teenage daughter is too scared of what people might say about her brother with intellectual disability and autism that she can’t talk about him at school (she is at a mainstream school and my son is at a special school) and is very reluctant to bring friends home. This reflects community attitudes and needs to change.