NDIA Accountability Project

Neurodivergent child's access to capacity building supports and impact on family

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Submission 1801

NDIS submission

What does the NDIS mean to me right now?

  • Access for my neurodivergent child to capacity building supports, to help them grow up to be the best version of themselves they can be

  • Having trained professionals that my child has developed a rapport with over an extended period of time be able to provide structure, care and support outside the home.

  • Having these same professionals liaise with my child’s school, so ensure that they are able to get the assistance and supports needed to keep them engaged and interested in learning

  • Seeing the changes and growth that my child has achieved due to them being able to access the professional supports due to their NDIS funding, knowing that we as a family would not be able to fund the level of support that they need with our current wages, and the cost of living.

How do I feel about the proposed changes?

  • I feel that the changes that have been proposed have been undertaken as a cost cutting measure, not as a way to move supports into other systems, which is a whole other concern.

  • Cutting funding across entire categories of support is unsafe and potentially dangerous. Every disability is unique, so making broad strokes cuts will cause detrimental effects to so many people who are at the more significantly disabled end of the category, because the minister is “averaging everyone out” instead of seeing each person as an individual.

  • Changes to the definition of “permanent” disability, I don’t even know where to start with this. My child is neurodivergent,(AuDHD), which is a permanent disability. It is not related to upbringing, nutrition, nature versus nurture, etc. Their brain is wired in a different way to neurotypical brains. There’s nothing wrong with that, but it doesn’t make it any less permanent. Treatment is hopefully going to help them to be able function better and independently, as well as support provided by family, but they still have a permanent disability. We cannot change that fact, it cannot be reversed.

  • Exhausting all treatment options is a joke. If you are in a rural/semi rural area, access to treatments is either an extensive waiting list, or a lot of travel. It’s also expensive! Many people are struggling to keep a roof over their heads as it is, without

Submission 1801

having to travel away from home to attend treatment, which also impacts schooling, ability of family/carers to work to make money to support their person, or for the disabled person themselves to be able to do any/all of these things as well.

  • Not overlapping funding for different disabilities. Really? Do they think that people can just switch off the part of their disability that doesn’t meet the threshold that’s been set? What happened to holistic care? Seeing the whole person, not just their particular condition?

  • Automating the eligibility process is going to cause big issues. What happens when someone has a need that doesn’t fit into the neat little boxes that the algorithm supplies on the assessment? Do they just have to forget that part of themselves?

  • Imagine applying for a service that you genuinely need to function day to day, but the system assumes skepticism first, requires mountains of evidence first - that costs thousands of dollars to get - and makes you explain your hardest moments over and over again. How is this fair? Do neurotypical people even have any idea what this application process is like, or the need to continue to defend your need to have the supports that you need to function? I doubt it.

Do I feel the changes have been explained enough?

  • Absolutely not! The government is basically trying to sneak this through by talking about a few key points, but leaving out so much that they are trying to take away from current and future NDIS participants - loss of ability to chose providers, loss of right to appeal, carte blanche to make funding cuts without oversight, and so much more.

What would the changes mean for me, my family, friends, community?

  • Personally, it would mean potentially watching my child not be able to access supports they desperately need to continue to grow and function in a neurotypical world. It would potentially mean having to change jobs, or what I do at my current job, to be home more to support my child, affecting my income, my career, and my family life.

  • For my family, it potentially means having to change what and how we do things, depending on what support we are needing to provide to my child. For my other child, this potentially means missing out on opportunities, due to lack of money, lack of adult availability. It also potentially means more reliance on informal supports, of which we do not have many.

  • For my friends, several of whom are also supported by NDIS for various reasons, it potentially means a loss of freedom, a loss of independence both inside and outside the home. It means potentially more reliance on others to be informal supports to

Submission 1801

be able to do basic tasks that most take for granted, like going to the supermarket and doing the grocery shop, which they can currently do with the assistance of a support worker, that funding is currently provided for, but could be taken away.

  • For our community, it is going to be a much bigger burden on an already overburdened health system. If people cannot be supported within their own homes, where do you think they will end up? In the health care system. Once there, if they are deemed unsafe to go home, they must then wait for assessments for placement, and then wait some more for somewhere to be available, which is very restricted, especially for younger people.

All these changes will potentially remove a participants ability to function as an individual, as a person. Who has the right to say that a person can’t go out to the shops, to a show, on a holiday? Would you tell a non disabled person that they can’t do any of these things?

I know money is one of the big reasons for all of these changes, but why can a government say to a wheelchair user (who works a job and earns a wage) that they can’t go on a trip, because they need a support worker to go with them, but say nothing to a non disabled person (who has the same job and earns the same wage). Both have paid for their travel and their accommodations from their wage, the wheelchair user has needed to use provided funding to have a support worker with them to function independently. NDIS funding is paying for the support worker, not the holiday.

Why is the government wanting to treat disabled people like second class citizens? They’ll say they’re not, but it’s how it feels. You need extra help to be independent, sorry, costs too much, no can do. Are we heading backwards towards the days where they institutionalised people with disabilities, to hide them away? Don’t be seen and don’t be heard?

That’s not right, and it’s not fair. Disabled people have just as much right to live a “normal” life as anyone else, and these cuts will mean that many are not able to do so.