OPINION | HANAN NOURA | MAINSTREAM SERVICES Vs THE NDIS | 1 July 2022

My Family is Dependent on the NDIS Because Mainstream Services Are Failing Us.

In the lead up to last month’s Federal Election, the increased cost of living stirred up heated emotions and competing interests. The former Prime Minister, Scott Morrison, stated that?lifting the minimum wage?was?“incredibly reckless”?and?“like throwing fuel on the fire of rising interest rates and rising costs of living”. Arguably, the rejection shifted the responsibility and implored vulnerable families to fall on their proverbial swords for the greater good of protecting Australia from higher inflation and a growing budget deficit.

At the same time, the ongoing debate regarding the future of the National Disability Insurance Scheme (NDIS) was also building momentum, prompting a heated ‘stand-off’ between economic principles and broader social needs. There are of course legitimate concerns about scheme sustainability, and yet such analytical observations are inherently at odds with the ‘real world’. Families are rarely discussing the merits of public policy while simply trying to keep their heads above water – a delicate juggling act with competing priorities, even at the best of times.

The NDIS blow-out costs can be partially attributed to “scope-creep”, which includes a higher than expected number of people entering the scheme; and complex social needs that may have been underestimated. Among the participant cohort, the most common primary disabilities include?Autism Spectrum Disorder (ASD), Intellectual Disability and?Psychosocial Disability.

Background on Autism and psychosocial disability

ASD?is a neurodevelopmental condition, which frequently co?occurs with other neurodevelopment conditions, such as Attention Deficit Hyper Disorder (ADHD), and intellectual disability. 50-70% of autistic people also have mental health conditions.

Psychosocial disability?is a term used to describe a disability that may arise from a mental health issue, which includes substantially reduced capacity to carry out everyday activities.

NDIS Supports vs Mainstream Supports: Mainstream Services Are Failing Us

As a former NDIS Local Area Coordinator (LAC), I am well versed in the ‘Reasonable and Necessary’ funding criteria as well as the?Council of Australian Government?Principles, which determine the responsibilities of the NDIS and the provision of funded supports ‘unless those supports are part of another service system’s universal service obligation (for example, meeting the health, education, housing, or safety needs of all Australians).

Nevertheless, as a citizen I am also acutely aware of the inequalities and the gaps in Australia’s social safety net. In addition to my own mental health challenges, I am also a parent with three children on the Autism Spectrum, and my family is increasingly dependent on the NDIS because mainstream services are letting us down. Over the past two years, the universal service obligations, which I am supposedly entitled to, have not even come remotely close to adequately supporting me and my family as we spiralled towards the proverbial edge.

First it was?JobKeeper. Just before the Covid-19 pandemic, my partner was made redundant and had resorted to working 12 hour shifts as an Uber driver just to make ends meet. However, when the pandemic hit, the work quickly dried up and he effectively became unemployed. Although he was initially eligible for JobKeeper, the payments were cut off after 6 months because he hadn’t been working during the subsequent period the previous year. Centrelink was virtually unreachable throughout the pandemic, and he was not eligible for other unemployment benefits or the family tax benefit.

Next up was?public health care. Our eldest son (15) was recently diagnosed with ASD Level 3 after an extensive wait through the public health care system. He is finally accessing NDIS supports, however, without the benefits of early intervention he entered the scheme with profound deficits in social skills, executive functioning, and emotional regulation. The two younger siblings (11 and 12) also need to be assessed for ASD, however due to financial constraints we are facing another 18-month public wait list just to see a paediatrician for an initial consultation – that’s before we can even start the process and join the next wait list for an actual assessment. One child became eligible for fast-tracked support through?Child and Adolescent Mental Health Services, but this support only became available due to escalating behaviours of concern and numerous emergency trips to the Royal Children’s hospital.

Then came?education. Our eldest son attends a mainstream secondary school, he is behind his peers academically and has experienced repeated bullying related to his disability. The school’s student wellbeing team have done their best to provide support, however it has become evident that they are neither trained or adequately equipped; and accessing additional supports through the Department of Education’s?Program for Students with Disabilities?has proven to be more confusing than navigating the NDIS.

The all-rounder was of course?mental health. As lockdown dragged on, our collective mental health rapidly declined. I have a history of anxiety and depression and a recent diagnosis of ADHD, which were all exacerbated under the pressures of Covid and mounting financial stress. I was pushed closer and closer towards emotional and mental burnout, yet even with a?Mental Health Care Plan, I couldn’t afford to pay for my own treatment. I had to borrow $400-800 per month to cover the out-of-pocket expenses so that I could keep seeing my psychiatrist and multiple psychologists, which included anxiety and depression management, ADHD treatment and couples counselling. Eventually, with my children’s behaviours escalating and my marriage falling apart, I made the difficult decision to quit my job as a NDIS LAC, one of the most rewarding jobs that I have ever had, and yet also one of the most emotionally taxing. I concluded that giving up financial security was in fact preferable to the looming breakdown, which would likely result in an arduous emotional recovery as well as long term unemployment.

And last but by no means least, came?affordable housing.?As we attempted to weather storm after storm, I contemplated how much longer I could continue to afford my current rental property, and whether the upheaval of moving house and schools was worth the potential cost savings. Eventually that decision was taken out of my hands. With the economy seemingly bouncing back, so did the rental market. The first and only face-to-face ‘routine’ inspection we’d had since moving into the property in 2019 ended in a?‘Festivus’?style?‘airing of grievances’. After the inspection, the real estate agent quickly declared that the house was in unacceptable condition and demanded significant repairs for common ‘wear and tear’, which could only be described by any reasonable tenancy standards as a mini renovation. This included replacing the Laminex kitchen bench, which shockingly had sustained minor scratches after 12 years; and replacing a patch of stained carpet rather than steam cleaning it. However, my personal favourite was the insinuation that I had breached the?Residential Tenancies Act?by not keeping the kitchen tidy – because while the dishwasher was in use, I’d had the audacity to leave dishes in the sink. Not surprisingly, 24 hours later the landlord unceremoniously announced that the rent would also be increased by almost 17%. Against the backdrop of?Victoria’s housing crisis, with only 0.9% of private rental properties in Melbourne considered affordable for households receiving income support payments, I am now scrambling to make alternative arrangements while also wondering what kind of rental reference I can look forward to.

As a family, our recent experiences have been confronting and have ultimately pushed us to a breaking point that we didn’t even know existed. Our family dynamics are strained, and our mental health is hanging on by a thread as we try to navigate multiple support systems that are clearly not speaking to each other. My psychologist says I am now exhibiting signs of ‘trauma response’ and I often wonder if I am a ‘hop, skip and a jump’ away from being assessed with a?psychosocial disability? Ironically, that may qualify me for more comprehensive NDIS support. The NDIS has been a lifesaver and capacity building supports will hopefully reduce the impact of future challenges for my children. However, this begs the question, which mainstream system is responsible for supporting our present-day problems? The new Albanese Labor government has?promised to defend and fix the NDIS. However, if mainstream systems continue to fall short, I suspect that many individuals, families, and carers will remain increasingly dependent on the NDIS.

Hanan Noura is a Strategic Communications Senior Advisor at People Economics, an independent management consultancy. Previously, she was a NDIS Local Area Coordinator.?