I know I should be excited about the outcome of the recent meeting of COAG’s Disability Reform Council (DRC). But, unfortunately, the truth is that I am not. I am in fact really, really nervous. On June 28th, the DRC met and agreed that the NDIS would assume funding responsibility for a range of health-related supports (read more here). These changes will come into play as soon as 1st October 2019. I know that this announcement will be a great relief to many people. But as the mum of three children, including one child with a profound disability and complex health needs, I anticipate a whole new round of disasters (though I sincerely hope I am wrong).
There is no doubt that the NDIS commitment to pay for some health-related supports that have fallen in the gap between the NDIS and mainstream health is good news. The funding of thickeners, nutritional supplements and epilepsy seizure monitoring assistive technology are just some examples of the real victories for advocates in this agreement. But other supports, like Percutaneous Endoscopic Gastrostomy (PEG) changes and access to critical respiratory equipment, offer so much more room for serious bungling.
Many people use PEGs, known in layman terms as feeding tubes, as their sole source of access to nutrition. So when a PEG is out of order, a person is unable to eat or drink. Most people use the kinds of PEGs that can be changed at home by a family member, experienced support worker or community nurse. In these cases, the transition to NDIS supports should not be a problem. But some PEGs can only be replaced under general anaesthetic, and that is where things get tricky.
The original COAG Agreement and the Operational Guidelines on Planning make it clear that services delivered through the Local Hospital Networks are the domain of health. This includes surgical procedures related to aids and equipment. But the new agreement muddies the waters. It suggests that PEG replacements in a hospital setting may be covered by the NDIS. I wonder if the Agency will be ready to manage those payments without affecting the timely delivery of urgent supports. Or perhaps only some PEG changes will be funded by the NDIS? Only time will tell.
There are also other supports whose delivery could suffer with the new division of responsibility. Currently in the Hunter region, access to cough assist and portable suction machines through the local area health network is fantastic. It’s coordinated centrally by a team of dedicated and responsive specialists, with continuity of support during hospital stays. A mum friend of mine has already commented that the transition of this service to the NDIS, when it is already working so well under health, could be seriously problematic.
It is not clear, for example, whether hospital-based respiratory specialists will be required to submit assistive technology applications to the NDIS. Unfortunately, we all know that the NDIS has not got its act together yet when it comes to assistive technology. For this to work, the mainstream health system will need to be ready to work closely with NDIS’ muddied bureaucracy. But are they ready to do this?
Advocacy efforts have rightly focused on supports that are health and disability related but not currently funded by either system. But some of the supports listed in this new agreement are being funded by the health system, and funded well. So it is not clear why they have suddenly moved to NDIS funding.
The rollout of the NDIS has illuminated some truly seismic failures of mainstream government services to meet their responsibilities to people with disability. Being aware of these failures can help us hold government agencies to account. But maybe just knowing about the gaps is not enough. If the NDIS refuses to fund a support, a person can appeal this decision to the NDIA and the Administrative Appeals Tribunal. However, the same mechanism does not exist to appeal the decision of health not to fund a service or a support. This begs the obvious question- is the NDIS bearing all the flack for supports that go unfunded while the mainstream health services are getting off scot-free?
Ultimately, knowing how these ‘political’ meetings work, I’m anxious that a room full of politicians have made decisions about things they know little about. It is not clear whether either party, the NDIS or mainstream health, is ready to enact some of the promises that have been made. This could leave people with complex disability and health support needs in greater risk than before. So I eagerly await the revised COAG Agreement and Operational Guidelines on Planning for greater detail on who is responsible for what, when and how. Until then, I won’t be celebrating just yet.