I’m a parent of two autistic sons. Navigating the NDIS has become my full-time job

As a mother with two autistic sons, I witnessed the immediate reaction of parents to Health Minister Mark Butler’s announcement on Wednesday that kids would be moved off the NDIS.

There was anxiety. Fear that the years we spent getting our children diagnosed, and the years we’ve spent trying to find them the specialists they need for support, would all be gone.

It’s an anxiety I can understand. But from my experience, the NDIS is so dysfunctional, so byzantine, that when I heard the announcement, my first thought was, yes, change is needed.

Both of my sons have NDIS packages. One is 14 and the other is nine. They were both diagnosed with autism within months of each other. They have both been on the NDIS for about three years. I can honestly say that my experience of the scheme has been exhausting.

I am a social worker by trade and I worked in a busy acute metropolitan hospital in Melbourne in trauma/cancer/aged care settings for more than 14 years, so I have ample experience in working in government and health systems. In fact, I thought my superpower was advocating for people in the health system who needed support. I did not know that my biggest battles would be for my kids.

Both my children were at school when things started to go wrong. For one, it was the transition to high school; for my younger child things fell apart after we changed schools. So, we followed the path to assessment.

This cost us about $1200 for each child. We were already seeing a paediatrician at the time. I sought a second opinion, which was a six-month wait and cost me $450. There I was told that my paediatrician was very respected and that they would follow anything that she had said.

Yes, we then had a diagnosis, and then we had access to NDIS funding, but what next? Neurodiversity, as we know, is a spectrum. There are layers to what support an individual requires and at different times in their life. There are also evidence-based practices that exist; but how can we find out about them? The NDIS gives you money, a local area co-ordinator, and they send you on your way.

The NDIS does not provide any scaffolding, any advice as to what to do. It provides money.

I had no idea what I was doing. We had a paediatrician, whom we saw two or three times a year, but it was up to me to find all the therapists. Since then, I have been unable to work as I am my kids’ primary carer and full-time NDIS case manager.

During our journey, we have changed paediatricians, (I now know that we should have been seeing a developmental paediatrician all along), we have seen four psychologists, three occupational therapists, a speech pathologist and sat on the waiting list for Community Mental Health Services for a year while my kids’ mental health deteriorated. We were then offered five sessions, but told we should be seeing a privately funded NDIS therapist.

I cannot overstate how hard it is to find good health professionals. There are waiting lists everywhere, and the good places have closed books. Facebook groups are filled with parents asking for recommendations for therapists.

My experience is my own and maybe my kids are complex, but it should not be this hard. I tell people that it would be easier to have cancer– at least there are clearer pathways to treatment. What I wish for are clear processes and streams of care and the multidisciplinary approach that exists for other areas of health.

I am health-literate; I am currently studying my master’s of public health; and as I struggle in this system, I think about what happens to those families who speak little English, or who have minimal experience of the health system. If I had not tried over three years to find an adolescent child psychiatrist, I am not sure where we would be. (Psychiatry is under Medicare and a different system entirely.)

I understand many families are concerned by the recent NDIS news. Concerned that the funding for their therapy is under threat. I understand how long it takes to find the right therapist, and how finding them is life-changing.

It has been a long journey, and we have quite a distance ahead of us. Both my kids have been out of the school system for over two years. One has had school-based trauma, and we’re trying to get him back; the other is there nearly half the time.

Don’t get me wrong. I am thankful for the funding that the NDIS has provided. But there is so much more required than money. It’s not clear how the new plan is going to work (I am sure neither the department nor the minister knows), but I do believe that having integrated systems at schools would help with systemic change. I think my kids would have benefited from such a system.

Whole system change is required to support this cohort. I know it will be messy trying to make the change, but it needs to be done.

This story is mine. It is my experience of the NDIS and having kids who are neurodiverse and need support. I speak only for myself. The news stories always focus on the financial blow-out of the NDIS, on how there are so many kids who are on it, how Australia’s autism rates are so high. There are fundamental reasons for this. Our systems are not equipped to support these kids. But the most important thing to convey, for me, is that the NDIS is broken.

Kate Kricker is a parent and a social worker studying a master’s of public health.

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