Jean was in tears.  “I feel like I’m only just coping, just keeping my head above water”

She’d cracked the night before with her partner, it was all just too much.

Her sister Emily has an NDIS plan, it includes daytime activities, respite for her elderly parents who have looked after her for years. But it doesn’t include enough money for transport. It’s going to cost them $8,000 each year, yet the NDIA has only approved $2,400. Since taking on the plan, they’ve already spent $3,000. The NDIA says to use the money from their Core Support funding. Which means Emily won’t get the core supports she needs, and her family will have to do more. More that they shouldn’t have to do.

What’s also missing from Emily’s plan is support coordination. “If you look at what I’ve done in the last three weeks, it’s almost a full week’s work”. Jean has a fulltime job, doesn’t live with Emily and Emily’s parents, and yet she’s doing another job managing Emily’s NDIS funding, arranging times with service providers, setting up appointments, arranging payments. Payments for services that Emily sometimes hasn’t been able to use. She’s been ill with bronchitis, and has missed a week of activities and it’s not at all clear if the service providers’ agreement allows them to use the funds later.

There are transaction costs in the adding more players in service provision. There is a well-known phenomenon in outsourcing where managing the relationship with the outsourcer creates the need for additional people and processes, and the outsourcer has to put in layers of people and process to manage their customer. This can be so much that the cost savings that outsourcing are meant to provide can evaporate.

People who have had integrated, coordinated services from state agencies are finding that even though the NDIS is supposed to be offering equivalent services, the NDIS creates whole additional layers of work: dealing with the NDIS: getting plan, negotiating the plan, managing the funds, and dealing with the service providers: securing services, ensuring they’re done properly, managing payments, negotiating when it’s not satisfactory.

All of this is driving Jean to breaking point. And Jean works in disability, she knows the system better than any ordinary person could be expected to know it, she has access to information and advice second to none. And yet she’s almost broken by it. If an experienced, capable, supported person can’t manage the NDIS, who on earth can?