Thriving Kids and Forgotten Adults

Recently, the Australian government slashed funding from the National Disability Insurance Scheme, citing blowout costs and fraud as the justification. for stopping billions of dollars in funding. At the same time, they're pushing the Thriving Kids model, a stripped down funding model focussing on early intervention and "community engagement", which is government speak for forcing parents and family members to do a lot of unpaid support, often to their own detriment.

Pro-Tip: Disabled people don't stop being disabled once the turn 18, and there are a whole class of Invisible Disabilities that only get diagnosed when that person tries to live independently, and realises how much they relied on childhood routine and structure and assistance that someone else was providing.

Sometimes I wonder if the government truly sees this all in a vacuum, and doesn't realise the blowout impacts it will have on other areas of spending.

Those billions in funding for community support and paid home care? That funded an entire industry of people who are now going to be scrambling to find more hours, possibly looking for new jobs or going on Jobseeker (unemployment).

The untold number of parents who will have to quit their jobs to stay home and provide unpaid care? That's a lot of money not being paid into Superannuation, or taxes, and a lot of current spending on Jobseeker and Carer allowances, as well as even more future spending on the Aged Pension, who those parents finally retire and don't have enough Super to fund their last years.

The NDIS was created in the first place because Public schools couldn't cope and Private schools had limited placements for students with additional needs. My twin was in one such "Transitional Class" for those who were judged as unlikely to be fully independent due to disability. (This was after my parents had to take the NSW School system to court for her to be allowed to complete Primary school in the public system, with the help of a one-on-one teacher's aide.)

The Transition Class held all the students whose families had managed to get a medical professional to sign off that they couldn't just struggle in Mainstream, like I was. In the 90s, that was no easy task; you needed at least a diagnosed learning difficulty and multiple co-morbids. If you managed to get that, the Transition Class had tailored educational programs nearly a decade before Individualised Education Programs became a thing, and a large focus on Life Skills like Internet and Public Safety, navigating Public Transport, basic budgeting, and all the other things needed to live a semi-independent life. They ran a mini-cafe once per term, with the students cooking and serving and cleaning (basic vocational training) and glorified sleepovers twice per term where the students would spend a weekend in a house together, responsible for organising chore division and actually completing those chores, paying bills with provided money, and everything else that came up (Activities of Daily Living).

Even within the class, there was a lot of variety. My twin's best friend was a girl with dwarfism and a need to have eyes on her 24/7 outside of the home, or she'd bolt in whatever direction she thought "home" was. At least two other students had severe Epilepsy (one spent a year in a coma after a Grand Mal seizure), one had a degenerative disease that affected her mobility and hearing, etc.

At the time, the NDIS wasn't a thing yet. Their parents just had to scrimp and save as much as possible, and hope that it was enough to pay for education, medical interventions, and care when the family could no longer manage by themselves.

For almost 20 years, I was the family back-up plan. My employment history at the time might have been spotty, but if I couldn't hold a steady job, I'd be a consistent Carer when my parents got too old to do it. When my twin died, it wasn't just that I'd lost the other half of me, I'd lost the direction in life that had been planned since I was old enough to plan.

I had just finished training in Aged Care when the NDIS was implemented, and it was genuinely life-changing. Schoolchildren who would have had their families paying out of pocket for a classroom aide, now had funding to help with that cost. Kids who would have been expected to struggle through school until they were old enough to drop out from the atmospheric stress levels and inability to concentrate or grasp the material now had learning plans and additional help.

People whose families couldn't care for them had options beyond going into Aged Care facilities or Group Homes full of foster kids and Juvenile Delinquents. Temporary Disabilities, like people recovering from Cancer, or injuries that didn't fall under personal insurance or WorkCover, had a framework to access assistance, care and support. Social Interaction was, perhaps for the first time, recognised as a vital part of life, and supported as such.

Getaways and Vacations were incentivised to be accessible to people with disabilities. Tour companies started up that catered specifically for wheelchair users, not just in terms of accomodation, but also activities, dining venues, and transport!

The rights of disabled people to not just survive, but actually thrive and enjoy life, was made government policy in 2012.

The NDIS was a well-intentioned idea that functioned like a dream when it worked, and was a complete bugger of a headache when it didn't.

It lasted 14 years, long enough for people to get used to it, and they very rightly don't want to go back to how things were.

Perhaps that's part of why I'm so angry about the cuts now.

Because I saw how good it could be, how much better disabled lives could become.

This isn't to say that the NDIS was wildly popular. It wasn't, even among those who needed it. Schools wondered if the support provided would live up to the high expectations being floated, and where the shortfall would be expected to come from if a student needed more help than they were getting.

Veteran Aged and Disability Care workers worried about lowered standards to meet staffing demands, whether Regulation would hold up in the face of all the new companies who would materialise, and the cost of administration and middle management. Many more wondered if the NDIS had really accounted for improved diagnostic criteria leading to more people getting diagnosed (it hadn't) and whether there were plans in place to catch the inevitable fraud (...kinda, but enforcement was limited).

Disabled people who were already in the system wanted assurances that they wouldn't be sidelined in favour of "easier" disabilities, and why the existing criteria couldn't just be properly funded and expanded, instead of creating a whole new framework.

Misinformation and scare tactics, then as now, filled the news cycle. Claims of participants cheating the system, claiming for things they didn't need. (Facts: the vast majority of Fraud was from dodgy providers who were not properly vetted and had complaints about them ignored). Wails of "wasting" taxpayer money and why the "lazy bums can't pay for themselves" were on every talk show and radio channel.

The cuts didn't come out of nowhere, either.

For years, requirements to access the NDIS have been getting higher and stricter, in an attempt to lower the number of actual participants. Submission after submission to prove that your disability is permanent and won't miraculously get better. Not just to get onto the NDIS, either, but every time they undergo a funding or capacity review.

The adoption of AI has not helped, nor did the resulting backlash encourage people to trust that the National Disability Insurance Agency had their best interest at heart.

I considered trying to get onto the NDIS, at one point, but when I spoke to people I knew who had a NDIS plan, or who had been rejected, I knew my odds of success were lousy, and wound up not trying.
I was too young and also not young enough, my disabilities were too invisible, and as long as I could muddle along with my GP making regular concerned noises about my blood pressure and stress levels, I wasn't disabled enough. The assessments needed to even put in an application would have cost money that I didn't have, only for a high likelihood of being told that I didn't meet the minimum disability requirements.

Story of my life...

For over a decade, there have been news stories of parents who tried to access the scheme for their children, but lived too remotely, or were assessed as being able to cope without it. For almost as long as the Scheme has been in place, there have been concerns about the projected numbers being far too low, and fears of funding blow-outs.

No one who has paid attention failed to see this coming, we just hoped that it wouldn't.