In Control, My Choice
Supporting people with disabilities towards Control and Choice
Imagine your life without control. Someone else has decided where and with whom you’ll live, what job you have, even what you’ll have for dinner tonight.
You’ve never learned about making decisions for yourself and you don’t have the skills to make more than a simple decision – tea or coffee? Opportunities to make decisions are rare because those around you make them for you – they’re busy, the system doesn’t let them, they DON’T BELIEVE you can…
After forty-odd years of getting what you’re given someone asks if you’ve heard about the NDIS. “The what????!” you say. Suddenly the disability support you have will no longer be provided unless you pay for it with this money you’ve been given. People tell you that you can decide to do something new if you want; you can organise your own life.
You really aren’t that happy with your life the way it is but you haven’t got a clue what to do next!
This is the story for many people with disabilities who will become recipients of the NDIS.
These people are also the consumers and students of Advocacy for Inclusion. For many the concept of “control and choice” is completely foreign. They have never been given the opportunity to develop the skills of independence: self-advocacy, decision making, or goal setting.
Yet, the NDIS expects people with disabilities to set goals, make decisions about what services and supports they want, and then tell everyone about it. The NDIS supports self-determination, but those who have never experienced it cannot be expected to develop it overnight to suit the timing of the NDIS.
People with cognitive and/or communication barriers need substantial support to prepare for the NDIS. Most specifically they need to be trained in setting goals, making decisions, and then self-advocating about those decisions and goals.
Paternalistic attitudes among the community perpetuate the belief that people with disabilities are passive and cannot be the drivers of their own lives. Many members of the community, including those working in the disability sector, hold the misconception that people with significant disabilities cannot have self-determination. This includes their closest family, carers and support workers. Some people with disabilities are surrounded by ‘doubters’, who directly discourage and block a person’s ability to make their own choices.
People with disabilities approach Advocacy for Inclusion because they have never been able to choose where they live, who they live with, what activities they do during the day, what employment they undertake (if any), and even what food they eat. Some do not even realise that they can have a choice in these things. People with disabilities ask us “do I have the same rights as other people?” They can see that their lives are different but have come to believe that since the segregation, exclusion, boredom and demeaning treatment surrounding them is accepted by others it must be accepted by them.
While there has been substantial commitment by governments for training, restructuring and workforce development for disability services in the lead up to the NDIS; there has not been a similar level of commitment to prepare people with disabilities to make choices and be in control. Potential NDIS recipients are not being supported to prepare for control and choice – rather there seems an assumption that others will continue to anticipate their needs, organise their activities and look after them.
People with disabilities need preparation to identify and assert their wishes and to have control and choice over their supports and their life. This must be recognised as of equal importance in the transition to the NDIS as the commitment to prepare service providers.
The NDIS is in danger of failing many of the very people it is designed to support. If people with disabilities are not driving the NDIS then nothing will change, it will simply be the same system with more resources. This is exactly what the Productivity Commission warned against, and exactly what people with disabilities and their supporters want to avoid.
Advocacy for Inclusion