My Deep Concern About The Proposed Changes To NDIS

I want to express my deep concern about the proposed changes to the NDIS.

I am the parent of an autistic adult. My daughter (23) is smart and funny, and is studying at university level, albeit a reduced load. She is also genuinely disabled in ways that are not immediately obvious to those who meet her briefly.

She cannot focus on more than one thing at a time, making simple things like crossing the road an enormous challenge (think about how many things you take into account at once when crossing a street with traffic: cars coming from different directions and speeds, how fast can I walk, do I need to step down from a curb, etc). Imagine being smart enough to write a university-level essay, but unable to assess how to safely cross the road, the lack of independence of that.

She cannot navigate public transport alone, and driving a car is out of the question (despite trying specialist training with OTs). Unpleasant smells are like a loud noise that she cannot block out. And actual noises are not a background thing that she can tune out - they are front and centre and inescapable. The world is full of stimulus and moving parts that others don’t even notice, while she is unable to filter them out. It takes all her concentration - 100% - just to complete simple tasks. The irony is that even though it is taking everything she’s got, to those not in the know it looks like she’s giving 10%. She is permanently exhausted. People who are ignorant perceive her as lazy; they think if she just tried harder she would not be disabled anymore.

She has no friends. Zero. Despite years of attending specialist ‘social groups’. Despite participating in university life and being a successful student. Nobody wanted to hang out with her throughout her entire school years. She was bullied by the aggressive kids, and excluded by the ‘nice’ ones. Teachers were always frustrated and annoyed with her. Perhaps it would have been kinder if she looked ‘more disabled’ so that people would understand that that being ‘strange’ and unable to keep up with the conversation was not something they could punish her out of.

She is always suicidal, just in a background way. Ending her life is always there in her mind, as a last-resort option and an end to the pain of trying to fit in. She finds life generally joyless, and is just managing to keep herself in it, with help from us, support workers and mental health specialists. She knows we would be devastated if she took her life, and to a certain extent she is alive for our sakes only. Imagine how that must feel, living just so that you don’t hurt others with your death. Trying to be independent when you don’t quite have the skills to achieve it fully. Trying to feel worthwhile when everyone you meet rejects you on some level. Knowing you might not ever be loved, or even liked, by anyone who is not your family.

She is witty and insightful, but she cannot organise her appointments or navigate bureaucracy; she lacks the executive functioning necessary for that. All her rental agreements, uni enrolments, medical appointments, etc are organised by me, or they don’t happen. I dread what will happen to her quality of life when we, her parents, are gone.

Support Needed for Individuals with Invisible Disabilities

She is a country girl, but in order to pursue opportunities such as higher education, she needs to live in the city. The NDIS enables her to live on-campus, studying and being in the world. She can walk to class, so not being able to use public transport doesn’t stop her from learning and mixing with other students. Support workers assist her to shop and get around in the community. Autism social groups give her the occasional outing where she can try to make a friend, hopefully, one day. Therapy for mental health helps her to process the daily knockdowns and find personal acceptance of her disability, while learning to advocate for and take care of herself.

I am permanently exhausted from fighting on her behalf and keeping tabs on her scheduling while maintaining my own employment, but that is nothing compared to what she goes through on a daily basis, just to try to live in the world. Please think about families like ours when you are assessing the new NDIS legislation. People with ‘invisible’ disabilities are easily judged as being ‘un disabled enough’ and pushed aside. They are not able enough to live independently without support, but they are easy fodder for cost-cutting. They are also easy targets for predators, and easily disregarded by those who don’t want to be troubled by the needy. NDIS support provides hope that they won’t fall through the cracks, they can grow and participate in mainstream society, they may find work, be self-employed, form a network of supporters eventually. Please don’t make life even harder for my daughter.

For that is what I think will happen - a stranger who doesn’t know her, and who is not a specialist in her condition, will apply a tool that they have had simple training in, to stick a score or label on our daughter. They may get it right or wrong, but they won’t live with the consequences if a person who needs support stops getting it. People who are specialists in her area of disability will be shut out. People who have known her for years and understand her unique range of strengths and challenges will be excluded from the process.

There is no such thing as an ‘independent’ assessor in the proposed context - they will have a boss to please, and it will be a boss who wants to cut costs.

We fear the goal posts will continue to be moved, as the government tries to find ways to take services away from the most vulnerable people in our community. Those of us who have a family member with a disability continually fight on behalf of our loved ones, hoping the stress and the regular feelings of hopelessness don’t drag us down. We try to be an anchor and show a positive face for our daughter, but we frequently lie awake at night wondering whether one day soon it will be too much for her to bear, and she will simply remove herself from a harsh and busy world

• no longer a problem or inconvenience to anyone, no longer having to fight for her right to meaningful participation in life.

I am happy for this story to be shared, but wish for my identity and the area I live to remain confidential, to protect my daughter’s privacy. I would not want anybody to identify her via my personal details.