Rachel Siewert (WA, Australian Greens) Share this | Link to this | Hansard source

I rise tonight to speak about the National Disability Insurance Scheme and young people with a disability residing in aged-care facilities. It is an issue that many of us in this place have a deep interest in, and, in fact, there have been two Senate inquiries around this issue. It's very strongly agreed that young people with disabilities should not be living in aged-care facilities, but at this stage there are still a large number of young people living in those facilities. There are a number of reasons for that, but mostly it is because we don't have enough specialist disability accommodation yet.

The NDIS is supposed to be about choice and control for people with disability and ensuring people with disability get quality services and supports. Their lives are supposed to be better under the NDIS, not worse. However, here is another issue where it looks as though the NDIS is not delivering. The NDIS is taking the approach that it should not fund the required supports for young people in those residential aged-care facilities above what is covered by the aged-care funding instrument, more commonly known as ACFI. The approach that the NDIS is taking is extremely concerning, because it will impact on the health and wellbeing of these young people with disability who are living in aged-care facilities. The reason for this position is the categorisation of the aged-care system as a so-called mainstream program under the National Disability Strategy and under the COAG NDIS principles and, consequently, it is required to deliver the full quantum of supports for younger residents. But ACFI is about the provision of aged-care support for older Australians; it is not for disability support and it is not for rehabilitation. Should the NDIS maintain this position, young people residing in aged-care facilities will be significantly disadvantaged in comparison to those scheme participants living in community settings.

I will give you an example of the impact of the NDIS's position by using a case study that has been provided to me. A young, 36-year-old man—I repeat, a 36-year-old man—suffers from brittle diabetes. Sixteen years ago, following a diabetes-induced hypoglycaemic episode, he sustained a profound acquired brain injury, commonly known as an ABI. Since being discharged from hospital, he has been living in a residential aged-care facility in regional Victoria. His ABI has left him vision impaired and unable to communicate. He cannot live independently at this stage, he is PEG fed and he experiences seizures daily. He requires one-to-one assistance from a support worker for all activities of daily living.

This person is yet to transition to the NDIS, but requires additional funding and supports than that covered by ACFI. The aged-care facility cannot meet the intensity and complexity of his support needs through the funding it receives from ACFI alone. Currently, he receives additional funding and support through a disability services individualised support package and funding that provides specialist rehabilitation therapy and support-worker training through Victoria's Acquired Brain Injury Slow to Recover rehabilitation program for younger people with acquired brain injury. This additional funding supports this person with the management of his oral hygiene, sensory activities and one-to-one support for all social and recreational activities.

The aged-care facility struggles to provide the level of monitoring and supervision required for his PEG feeds, hydration and medication routine and regular checks of his brittle diabetes. His family ensures that one or more family members visit him each evening to oversee his last PEG feed and settle him for the night. His family maintains this routine out of concern for his safety during this period of peak demand on nursing staff. Based on the position of the NDIS regarding its funding of supports for participants living in aged care, there is concern that when this particular person transitions to the NDIS he will not receive the level of support he currently depends on.

The inability of the ACFI to meet the support needs of a young person residing in aged care is the key reason for the deterioration in health and wellbeing of those individuals during their time in such facilities. Residential aged care was never intended to support the different, more intense needs of its younger residents, and it is not resourced to do so. The ACFI provides a maximum of $78,131 per annum for residents with the highest level of need, whereas one specialist acquired brain injury service in Victoria receives some $380,000 per person per annum to provide the supports and services each resident with high and complex needs requires. The NDIS should be funding all reasonable and necessary support—that's what it says in the act; 'reasonable and necessary'—for young people residing in residential aged care. Otherwise, they are failing to comply with section 24 of the NDIS Act. They must change their position as a matter of priority. If you follow the logic of the NDIA, they would keep all young people in nursing homes so that all they have to pay is ACFI and not the proper costs and supports for services for people with disability trying to live independently.

As I said at the start of my contribution tonight, in all the years I've been here talking about this issue—and I know that Acting Deputy President Reynolds cares deeply about young people living in nursing homes—we all have agreed that we need to be transitioning young people with disability who are in nursing homes out of those aged-care facilities. The Young People in Nursing Homes National Alliance point out the flawed approach of the NDIS on this. They point out that because this position does not allow the full assessment and funding of reasonable and necessary supports for each individual residing in residential aged care, the NDIS is failing to comply with section 34 of the NDIS Act. They also point out that, by reimbursing the Department of Health for the ACFI, the NDIS becomes the sole supporter of supports for young people in nursing homes and aged care. Because it is the sole funder for scheme participants in residential aged care, the COAG principles to determine the responsibility of the aged-care system no longer apply and cannot be relied upon to inform section 34 funding decisions.

The NDIS was put in place, as I said earlier, to ensure reasonable and necessary supports, and to provide choice and control. There is a wide recognition in the community that that is about providing a better quality of life for people with disability. Young people living in residential aged-care facilities are not receiving the supports they need and, in particular, the rehabilitation they need. Senate inquiries have been told that repeatedly. There is an agreement that we should be encouraging young people to be able to move out of residential aged-care facilities. That will be barred to them if their health and quality of life suffers because they are not getting the supports necessary to live and meet their needs in a residential aged-care facility. I beg the NDIA to reconsider their approach to ensure that young people living in nursing homes get the supports and services they need for quality of life; otherwise, the young person that I just gave the example of will not receive the supports that they so desperately need to ensure that they live a decent quality of life and get the rehabilitation they need.