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?

In terms of accessible communities, I would eventually like to see villages created for people with intellectual disabilities. The central feature could be mansion style housing for the lower functioning individuals, with communal dining and a range of living areas allowing for both social interaction and time spent alone.
These villages could also have units for those who are a higher functioning and a range of supported employment or day programs, depending on the level of ability of individuals.

Individuals could also be taken off-site to enjoy other activities of their choice such as participation in sport, going to the movies, etc.

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

I often find that strategies looking to maximise the quality of life of those with disabilities focus on those who are capable of voicing their concerns. It is paramount that parents / carers are involved in the planning for services for the lower functioning group. For example, my son has autism /id and a mental health condition, and although his language is quite good, he is unable to communicate many of the daily challenges he faces.

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?

I applaud the idea of attitudinal change in the community but this will only work if disabled people are fully accepted for being what they are – disabled. It is unrealistic to expect others to not treat them differently in some way. Indeed, I want people to recognise my son’s discomfort with social chit-chat and to allow him to participate by being on the fringes. The same could be said for participation in the workplace. A potential employer could not, and should not, be expected to have the disabled person performing at the same level as others. However, there will be tasks the disabled person CAN perform and these should be the focus.

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?

This sort of question is aimed at higher functioning participants.

For those who access the NDIS, it makes sense for the LAC to be the first point of contact. Those not on the NDIS need a central person to help them navigate the system. Perhaps at a local govt level.

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?

As above – I think a central person should be the ‘go to’ person. Even if only to provide information to those seeking it.

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?

Any reporting on the lives of people with disabilities should include reports from the individuals themselves. If the participants are lower functioning then carers/ support workers could give input.

An annual report would be reasonable.

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)?

I have an issue with this sort of plan. The rest of us don’t need to be held to a plan. Why should this be the case for people with disabilities? Why can’t they just live their lives?

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?

Don’t assume that all people with a disability are capable of engaging in this way. By all means ask those who can – but for the others, engage with significant others in their lives. Don’t just overlook them.

In the 30 years I’ve been a parent of someone with disabilities, I have seen people in administrative roles making decisions about people with disabilities based on those who are higher functioning. THIS IS WRONG. Lower functioning people – although they cannot communicate in the same way – ARE JUST AS IMPORTANT. CONSULT WITH THEIR CARERS AND REGULAR SUPPORT WORKERS. THIS IS THE ONLY WAY YOU ARE GOING TO FIND OUT WHAT THEIR LIVES ARE LIKE.

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

Just remember that lower functioning people with disabilities DO Have a voice – that of parents and carers. LISTEN TO US.