Discrimination and waste plague disability scheme

The NDIS was a far-sighted, human-centred scheme when it was first proposed. But it needs drastic pruning or it will send us broke.

Although the NDIS stresses a self-managed philosophy, which is laudable, the inconsistencies and waste are built into the non-means-tested scheme, through its “whole package” approach.

Recently, Kerri-Anne Kennerley appeared on popular news magazine show A Current Affair talking about what she sees as age discrimination in the National Disability Insurance Scheme.

Her husband became a quadriplegic after an accident when he was over 65. His disability was not age related, but they soon discovered he was ineligible to receive NDIS. Instead, he could receive only the much reduced government aged-care package. She paid for private care, as she had the means. However, she is running a campaign to change the age limit.

She has a point. Why should someone old in a wheelchair, a quadriplegic who needs round-the-clock care, be treated differently from a young person?

However, as Bill Shorten pointed out on the same program, the NDIS was set up to plug the gaps for young disabled people, not aged care. The NDIS is failing and the gap between the available services for disabled people is actually widening in favour of the less-disabled younger cohort.

This is just one of the many inconsistencies plaguing the NDIS, many a result of the lack of independent oversight, the commercialisation of the providers and at the same time, under the mantra of tailoring help to each individual’s needs, trying to be all things to all people. What is more, it is not means-tested, and the lack of independent oversight, as recent scandals show, have resulted in rip-offs by dodgy providers.

The federal government and all the states have finally agreed on a review of the NDIS. According to the most recent ministerial report, the NDIS is supporting 466,000 Australians. Issues identified in this report include inconsistent access and planning deci­sions and inequalities in packages based on socio-economic status.

“It shows that without mitigation, projected costs are higher than both the 2021 Portfolio Budget Statements and the 2017 Productivity Commission project­ions. The average payment per participant has continued to increase at 11.8 per cent per annum in the three years to 30 June 2021. Total participant costs increased to $6.6bn in the last quarter of 2020-21, a 33 per cent increase in participant costs from the same period last year,” the report says.

NDIS Minister Linda Reynolds has said “we now have people on the NDIS with chronic health conditions, not permanent significant disabilities” for which the scheme was designed.

The single biggest area of growth in NDIS clients is not the severely disabled, as was once envisaged, it is children with autism spectrum disorder.

This is partly because families that need help with a developmentally delayed or behaviourally difficult child find it difficult to get help through more regular channels, such as the health or education systems.

However, a diagnosis of autism will provide a minimum of 20 hours of help through the NDIS without having to apply for independent diagnosis by a panel. This controversial proposal was bitterly opposed by the autism lobby. But the consequence is that high-functioning level one children with autism or Asperger’s will go through the NDIS when parents just may need some support for the child’s school work.

Take a look at the autism websites. Many parents do need help, but a fair proportion of middle-income parents could find this privately if they have the means or through the normal health and education channels.

Contrast the needs of parents with behaviourally difficult children with families who have a seriously disabled child, perhaps with severe non-verbal autism, or neurological and physical disabilities. Some of these children need 24-hour care. These families should be entitled to much more support and would get it if there were fewer children with very mild disabilities using the scheme.

Discrimination in the NDIS is not confined to the aged. Although the NDIS stresses a self-managed philosophy, which is laudable, the inconsistencies and waste are built into the non-means-tested scheme, through its “whole package” approach.

For example, a young man I know is partially sighted, legally blind, and until recently was functionally blind. He receives the blind pension and support through the NDIS and has had help from Vision Australia with things such as technical aids since he was a child. However, they burgeoned into an NGO and transferred him to the NDIS. He has a good job, but needs transport to work.

So he suggested they put some of the money allocated in his “package” for household help and gardening to regular transport. He is spending hundreds a week getting to work, but he receives only $120 a month for transport.

The irony is that with a self-managed philosophy you are the person who is supposed to decide your needs. Instead, they suggested they could provide him with a driver, who would then be designated a support person who would then have to stay with him as support. However, he doesn’t need or want a carer, just an Uber driver.

This is typical of the “whole package” approach of NDIS providers. It encourages jobs for people in the sector and waste. So why not just get out of it? And here is the typical catch-22. If he leaves the scheme and his sight deteriorates again, getting back into it is almost impossible.

The NDIS was a far-sighted, human-centred scheme when it was first proposed, and it could be again. But it needs drastic pruning and a more flexible approach, or it will send us broke, perhaps as quickly as the pandemic.