Back in the day, before the National Disability Insurance Scheme arrived in our area, my son was supported by the community mental health system – a network of services focused on keeping people out of the acute hospital system. There was always someone I could contact when I saw him withdrawing into himself and becoming unwell again. A sort of safety net.

My son experiences severe and enduring depression and anxiety. He has been hospitalised several times when suicidal. There are some things a mother never stops worrying about and that is one of them. And it’s why the NDIS scares me.

I had faith in the community mental health workers who used to support my son. If there was a crisis, I knew his dedicated outreach worker had a process to follow and people to contact. They worked in teams and there was always someone who could be reached and would take responsibility. These were people with relevant skills and qualifications, who received ongoing supervision and training – they were invariably employed full-time on permanent or at least yearly contracts. In my eyes they were never paid enough, but hopefully it was a living wage.

Community mental health support workers have been replaced by disability support workers. I think that speaks volumes about stigma, de-skilling and the loss of a recovery approach.

These mental health support workers always seemed to have time to connect with their clients and develop an ongoing therapeutic relationship with a focus on personal recovery rather than disability. Vitally, they could advocate for clients struggling to speak for themselves. Accessing support didn’t require begging for help or spending months getting reports to prove you were “disabled enough”. Money was never mentioned.

Sadly, under the NDIS, that has all changed.

The NDIS promised independence, choice and control. For our family, it has had the opposite result. Navigating the system has been a crushing experience. I rarely sleep through the night anymore. I am so tired.

In our area, the state government transferred all community mental health funding to the NDIS more than a year ago. The organisation supporting my son moved out and the outreach worker he trusted was laid off. Although our son was one of the few people automatically eligible for the NDIS, 14 months later he still has no supports.

Just imagine what can happen to someone experiencing serious mental health challenges in 14 months.

I can’t tell you how many times my son has fallen through the cracks after losing his outreach worker. Time after time, he’s been forgotten – another name disappearing down the vortex of a database, where no one can possibly find it if they aren’t repeatedly asked to look. This is a system where no one seems to have any sort of ongoing responsibility or connection to an individual. There’s nobody you can follow up with. There were so many changes, all at once, and it’s just too hard for anyone to navigate.

My son’s first NDIS plan, which he was never able to activate, was very limited. It only funded a tiny amount of basic support for skill development, such as public transport training. According to the NDIS, he needed help to use trams and buses – he didn’t – but they failed to offer any support for him to put his plan into action, a process that involved not only finding service providers but also interviewing them and negotiating contracts.

When depression stops you getting out of bed and robs you of motivation, energy, confidence and self-worth, how are you meant to proactively seek support? When anxiety stops you from answering phone calls, speaking to people or even leaving the house, how do you interview service providers?

If you can’t advocate for yourself, and you have no one else to advocate for you, then I don’t know how you can possibly access the NDIS. Maybe that wouldn’t be such a huge problem if the other supports weren’t withdrawn, but that’s what has happened to my son and so many others. Assertive outreach might once have changed the situation, but I haven’t seen any sign of it under this scheme.

Our son was left alone to manage. But he couldn’t.

Like many carers and families supporting loved ones, I was excluded from the NDIS process and didn’t know what was happening. My son didn’t live with us and he desperately wanted to be independent. I respected that and I wanted to be his mum, not his support worker. But I was also naive. It didn’t once occur to me that he wouldn’t have any help to navigate this new system.

I offered to step in when he became obviously unwell. He seemed to have given up hope and I was increasingly worried about his safety and wellbeing. With assistance from a local mental health advocacy group, he finally received a new NDIS plan with more funding and support coordination. But that proved just the first hurdle. There are so few mental health providers left in his area that waitlists for support coordination have stretched to six weeks, and there is no equivalent to the youth mental health outreach worker he had before.

The lack of comparable supports to those provided pre-NDIS is really important, especially in light of recent funding announcements by Health Minister Greg Hunt focused on those who aren’t eligible for the scheme. There is a danger that people with an NDIS package are excluded from other programs on the basis that they might be double dipping, when in fact supports are not comparable. This has happened with respect to other disabilities.

Given next to no practical information by the NDIS, I’ve watched its rollout as any interested spectator would – reading position descriptions posted to job websites. Support workers are now employed on casual or short-term contracts with limited hours. Pay is close to the minimum wage, about $20 an hour. Most positions don’t require any qualifications, let alone experience working in mental health or with young people. It makes for a heartbreaking read, knowing what is at stake for so many people in the community.

Community mental health support workers have been replaced by disability support workers. I think that speaks volumes about stigma, de-skilling and the loss of a recovery approach. I can’t tell you how much damage can be caused by someone who doesn’t understand the impact of mental illness and the need for hope.

There are practical issues, too. NDIS support workers are expected to use their own cars, creating issues around safety, privacy, insurance and who pays for mileage. This is just one way in which it feels as though, under the NDIS, the focus has shifted from people to numbers. These interactions have been reduced to financial transactions. Every conversation, email and minute of travel is charged at an hourly rate. But when everything is about money, what happens if you have little funding?

At the moment, I can’t see any safety net for my son, and it scares me.

All I’m left with is a swirl of questions. Under the NDIS, will there be anyone to call if I see my son becoming unwell again? Will anyone have the skill, or even the time, to develop a trusting and therapeutic relationship with him, and be able to recognise when his mental health is declining? Will support workers communicate with one another, or will they be siloed – clocking on and clocking off, going their separate ways? Will anyone be accountable?

My family is not alone in this. A report just released by Mental Health Victoria found about 91 per cent of the 150,000 or so people experiencing severe mental illness each year in Victoria won’t be eligible for the NDIS. But funding for community mental health services continues to roll into the NDIS, leaving many people without alternatives for crucial psychosocial supports. I dread to think what will happen to them.

The decision to share my fears publicly was a hard one, but I’m doing this because we cannot overcome a problem that can’t be seen or acknowledged. However, I don’t want to throw blame around. Without exception, every single person I’ve contacted while attempting to advocate for my son has tried their best to make things work. But they are stymied by bureaucracy that can be overwhelming.

I understand that the NDIS is wonderful for some people but, in my family’s experience, it hasn’t been designed for mental health. Something has to change, and we need to talk about it. People’s lives depend on it.