Earlier this year I met a middle-aged man with an intellectual disability. His knowledge of multiple government systems was frighteningly impressive. Repeatedly he told me, with a palpable anxiety, that he was desperately worried because the advocacy group that was supporting him was about to lose its government funding. His depth of understanding had come through exposure. This man had been through the justice system as a victim, witness and offender. Despite this, his biggest fear was not that he might have to go through it all again, it was that he might have to go through it alone.
As of July 2018, the NSW government will be handing over its entire disability budget to the Commonwealth Government on a term in its deal to transition to the NDIS. The scope of the NDIS does not include advocacy, leaving many advocacy groups in a precarious situation and uncertain about what services, if any, they can offer into the future.
I have read and heard countless stories of individuals who are worried about this funding cut. Being put in contact with an advocacy group can represent a turning point for people with disabilities as they try to negotiate our complex health, justice and education systems. An advocate can be what turns confusion and intimidation into confidence and empowerment.
Capacity building and ‘choice and control’ are key principles that underpin the NDIS. From the perspective of a government official, you can almost see how this could lead to the assumption that advocacy will become redundant in the NDIS world. Once the capacity of people with disabilities has been built and they are able to represent themselves and make informed choices, why will they need an advocate? What this presumption ignores is that the NDIS only prepares people for everyday life. It is when situations leave the realm of the ordinary that vulnerability intensifies and advocacy becomes necessary.
Five years ago I was sitting in a doctor’s office with my dad. In those early days of my chronic illness I always brought dad along with me to medical appointments. The medical language that was constantly being used was foreign to me and the stakes were very high. Consequently, I quickly became overwhelmed and confused. On this particularly day the doctor walked in with a mission. The first thing she did was to demand my father leave the room. For the next half an hour, she interrogated me about fabricating my illness to the point that I was in uncontrollable tears, unable to defend myself. I resolved to never see another doctor again. A resolution I thankfully broke.
The doctor knew what she was doing when she told my father leave the room. She was depriving me of my advocate. I am a confident person; I will defend myself in ordinary situations. But this was not an ordinary situation, and I was broken. If I had an intellectual disability, the situation could have only been worse. I can see why the man at the consultation is so worried. The NSW government has effectively demanded that all advocates leave the room.
The Agency has made it abundantly clear that it will not cover the shortfalls of other government services. The Departments of Health, Human Services, Education, Justice and Transport must still do their part to make an inclusive society for people with disability. The NDIS is a once in a lifetime reform, but it is also a once in a lifetime excuse. With $22 billion going towards the Scheme it becomes easy for other Departments and States to assume that people with disabilities have now been taken care of. This is not fair on people with disabilities and it is not fair on the NDIS, which needs to be given a reasonable mandate if it is to succeed. In the end preparing for the everyday life means nothing if we do not prepare for life’s unexpected turmoil as well.