What is happening to respite under the NDIS?

On the 13^th of September, The Australian reported that CatholicCare Sydney had stopped providing respite care and short-term accommodation because the NDIS pays only a flat daily rate, “and the charity cannot make the case to continue. The flat rate does not reflect penalty rates and other costs.”

My first thought was: this is just the beginning.

Last week I was in central NSW running a marketing workshop for a large Dubbo based disability service provider. During the workshop the Children’s Services Manager, an incredibly impressive, dedicated woman made the startling remark: “there will be more children relinquished into the care of the state if families in crisis aren’t able to obtain NDIS funding for respite.”

As a parent, I found this chilling. Her comment left me speechless.

Stupidly, I hadn’t realised the obvious implications of the lack of respite accommodation for many children with behavioural disorders and complex disabilities.

If parents can’t get a break when their family is in crisis, this may become their only alternative.

Hot on the heels of my Dubbo experience, journalist Sherryn Groch published a disturbing report in The Canberra Times, ‘Canberra families may relinquish children amid NDIS funding shortfalls’. The article stated that the last two providers of overnight care for young people in the ACT, Marymead and The Disability Trust, were winding back services. Marymead announced in August that they “could not afford to run respite for people with high needs under the Scheme’s current funding, closing its doors to 70% of families who depend on its overnight service.”

Since my first draft of this article, the CEO of Marymead, Camilla Rowland, announced on October 3 that a solution has been reached with the National Disability Insurance Agency with the support of the ACT Office of Disability. But as the Canberra Times reports, this solution provides affected families with ‘new temporary plans from next week, though these plans are only expected to last for the next six months as the agency awaits the outcome of an independent review of its pricing.”

1. Time out.

How did it ever come to this?

What about families in NSW and other NDIS regions who may be locked out of respite services right now?

We need a long–term resolution to respite (or short term accommodation) that applies nationally. The to-ing and fro-ing around the NDIA’s unrealistic pricing of disability services should now be beyond politics. Service providers are withdrawing services because they cannot afford to deliver them.

It becomes difficult to dismiss the NDIA’s mismanagement of the respite issue as simply another implementation ‘glitch’ in the process of delivering such a mammoth reform.

The issue points to a deeper fault-line emerging throughout the entire Scheme:

Despite all the rhetoric and good intentions, too often the haphazard implementation of the NDIS is actually resulting in less choice and control and more confusion and anxiety for people with disabilities and their families.

We really need to be smarter than this.

To his great credit, the short-term accommodation (STA) pricing issue is something that Dr Ken Baker of NDS has been championing for some time with the NDIA.

The most critical issue discussed in a meeting between the NDIA and the NDS earlier this month was the inadequacy of the price for Short Term Accommodation (STA). The NDS website states:

“Services are closing, which will be devastating to the families that use them. A resolution is required before the pricing review by McKinsey and Company concludes at the end of the year.”

They’re right. A resolution to this issue is required before the McKinsey report concludes.

If disability service providers are unable to develop a viable business model under the NDIA’s pricing constraints then who will provide respite accommodation for families in crisis?

The current lack of clarity around ‘which agency’ is not just an ACT issue. Every state government will need to resolve this – and fast. The situation is particularly urgent in rural and remote regions where the costs of transport and service provision are not adequately covered by the modest NDIA loadings.

The NDIA has only just launched in regional NSW, so we need to take action now in order to prevent widespread closures of vital services for local families in those regions.

But there is another issue here that needs more daylight. It was raised by the Productivity Commission earlier this year and only last week by the NDS Northern Territory State Manager Noelene Swanson, commenting on the NDIA pricing and its affect on rural and remote regions:

“At the moment, prices are set within the NDIA itself, and there’s a bit of conflict there,” she said, “you’ve got the people setting the prices trying to control the prices, as well.”

As a marketer, in my opinion this conflict is restricting the capacity of the disability market to actually meet the needs of its customers. How can it be acceptable for the funder (the NDIA) to also be the price setter?

In rural and remote regions, the disability market already lacks the capacity to deliver on the NDIA’s targets and the demand the Scheme will generate. We are looking at market failure in many parts of rural, regional and remote Australia due to the cost of transport and the distinct lack of services, workforce and infrastructure. What will happen if more providers close their doors?

The NDIA pricing is affecting every aspect of disability service delivery. Given the crisis nature of respite accommodation, the lack of clarity around its funding cannot continue. As a civilised society we have a duty of care for our most vulnerable.

How many children with complex disabilities will be “relinquished into care” before the NDIA realises its pricing folly?

Fran Connelley, MFIA, is a strategic marketer who specialises in the non-profit sector.

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