NDIS – confused? So is everyone else.
Ahhh yes, I can hear you all agreeing from wherever you are reading this… NDIS. The scheme we all love to hate…
I am immensely grateful for NDIS and the financial support I get for my son with this funding. I couldn’t afford to give him the supports myself that he utilises now. I feel those of us in Australia are very lucky to have such a program to support us.
But I also wish it was something that I never had to know existed. Whist the government is not responsible my child’s abilities or lack there of, I often wish their support service was easier to navigate. Nobody I have ever spoken to about NDIS has been truly sure of what they are doing. There is limited continuity, various opinions, changes in rules…it’s as clear as mud for the most part.
I think I would be ok with this if it wasn’t for the fact that bringing up a child with level 3 Autism is a full time, all encompassing job all by itself. Most people who have access to NDIS funding need support because they need support. Not because they need another issue to stress over. It is counterintuitive to hand the responsibility of sorting this mess to a parent/carer etc who is already struggling to get through the day. Of course there are supports to help us along the way, but again, it depends on who you talk to as to which lot of advice you get. The path is like walking through thick fog. I wish I had time to fully immerse myself and learn all I needed to to get the best support package for my child. But my energy levels and ability to process this information at times, it lacking. Why? Because I am raising a child with extra needs and I need the support. It would be so amazing if I had a person who would simply do this for me and that I trusted would have my child’s best interests at heart.
I find most people working for/with NDIS are just as confused as those asking for support to make these plans. People are waiting months for basics. Families are breaking up, children and adults are missing vital experiences, equipment and care that could change the trajectory of their lives. A have heard stories of people fighting for basic support like wheelchairs. Carers having mental health crisies due to overwhelm and feeling so very alone with what they are dealing with.
For me having a child on NDIS is such a double edged sword. I can support my son so much better with the funding I receive. I am immensely glad I live in a country that supports my son with this scheme. Sometimes I wonder though, why it needs to add so much stress and complication for those of us us already living in this existence already.
So if you are currently doing the battle with funding or lack of, know you are not alone. Groups in places such as facebook are full of people who are also experiencing this added stress. There doesn’t seem to be a way out..currently. I would love for the NDIS to be predominantly run by us who need it. But unfortunately it seems the policies and expenditures, rules and regulations are written by those who have had no life experience. How I wish this would change for every single person who needs NDIS support.
Genuinely, thank you Australian government for your support for my son. But you can keep the added head fuckery and stress that comes with it. This is simply not in my sons or my own best interest.