Submission to the Senate Standing Committee on Community Affairs Inquiry

into the National Disability Insurance Scheme:

I can see two fundamental problems with the current disability system:

• It assumes that people with a disability, and their families, are not capable of making decisions in their best interests. People with a disability, and their families, are treated as though they have no rights and should be grateful for whatever crumbs of largesse powerful gatekeepers (social workers, bureaucrats, disability professionals) are willing to provide them with.
• Instead of going directly to people with a disability, funding is siphoned off into the empires of numerous agencies and disability professionals with a vested interest in maintaining and expanding their powerbases.

The result is a toxic mess for people with disabilities and their families. My experience of the current system is as follows.

My godson was diagnosed with Pervasive Developmental Delay when he was one. Up until he was six years of age his parents received absolutely no funding assistance, and the agencies approached provided no help but ran plenty of interference, insisting that their protocols and systems be followed, even when no funding was available at the end of a wild goose chase. Anything they offered was sub-standard, not in our region, not relevant and as hard as hell to get access to. The prevailing attitude was always that the family should be grateful to receive whatever they could provide. At no time was funding or support offered to supplement or augment the wonderful ideas and incredible carers that the family had found and were paying for, privately. All care offered by the state agencies was irrelevant, sub-optimal and laughable in its scope. My godson has the most magnificent parents who have invested everything they have so that he is safe, that his needs are met and that he can develop and fulfil his potential. They are doing a wonderful job and they receive absolutely no support from the government or from any agencies. Australia prides itself on being an egalitarian nation where every citizen is valued, but this just isn’t true. People with disabilities and their families are ignored, shunned and treated like fools. It is a national disgrace.

My mother has been in a wheelchair for many years. My elderly father is her carer. Aside from four hours of home care per week they receive no support or care, and my father desperately needs respite care. I am in the process of trying to negotiate for some respite care for him at the moment, and I am drowning in the plethora of acronyms, organizations and programs. It feels like a full time job to work out where help might be available from, and I know from previous experience that I may well invest many hours in navigating the system only to discover that my family is not eligible for any assistance at all. Last time I tried to organise respite care so that my father could go away for a long weekend I was told that the service was strapped and that I should provide that respite care. The woman I spoke to on the phone was hostile and it seemed that this was her first line of defence when someone wanted a service from her: to try to guilt trip me into not wanting that service. I was stunned.

The disability system in Australia is beyond broken. We must institute a whole new way of looking at disability, where people with disabilities and their families are empowered with money and able to choose the care they receive. Disability funding must be given directly to people with disabilities and their families. That way, carers, services and organisations that provide good services will thrive, and corrupt gatekeepers more interested in building their empires will wither.

Most importantly, people with disabilities will be able to plan their lives and make their own choices. This is a fundamental human right. Our nation is currently failing and as a result we are inflicting untold misery on people with disabilities and their families and carers, and losing the potential contribution that people with disabilities could be making to our society if only we truly supported them, rather than thwarted them at every turn.

Lisa Brockwell