Acknowledging the circumstances and experiences of younger people in aged care homes who are not NDIS participants: A response to “The budget includes $7.3 million to get more young people out of aged care homes. Is it enough?”
Authors
- Dr Caroline Hart, Research Officer, Scope
- Dr Stella Koritsas, Head of Research, Scope
- Dr Barrie Shannon, Research Fellow, University of Melbourne, School of Social and Political Sciences
We would like to acknowledge the important article about younger people living in aged care homes [Winker, 2023], including its vital message about the need for further government involvement in addressing this issue. We agree that the previous government’s target of having no younger Australians living in aged care homes by 2025 is unlikely to be met, and novel approaches are required to address the challenges in helping younger people living in aged care homes to find alternative, more suitable housing and to provide them with the support that they need to achieve a better quality of life and age-appropriate lifestyle.
In her article, Winkler rightly suggests that, for younger people living in aged care to be able to leave, the NDIA has a responsibility to ensure suitable disability housing is available. However, we pose the question: what are the options for those younger people living in aged care homes, or at risk of entering who are not NDIS participants and thus do not have access to specialist disability accommodation? Data indicates that not everyone living in or at risk of entering an aged care home will be eligible for the NDIS.
Our recent research, carried out by the Scope-University of Melbourne partnership, focussed on the non-NDIS population specifically, for whom very little was previously known. Our research found that many younger people who are not NDIS participants have particularly complex needs. The funding that is available to this non-NDIS group of younger people does not provide the same level of care that is available in aged care. In the absence of funding to address all their needs, the opportunities for them to live somewhere other than aged care homes are very limited.
Winkler describes those living in aged care homes as typically having late-onset disability including brain injury or neurodegenerative conditions. Yet, we discovered that there are also many younger people living in or at risk of entering aged care with a wide range of complex or multiple medical conditions (such as obesity, respiratory, heart, and liver diseases, psychosocial issues, or long-term drug and alcohol use). In addition, we found that there is a substantial proportion of younger people with life-limiting illnesses and palliative care needs who are at risk of entering aged care. Whilst people in these situations can experience debilitating symptoms, and often require 24-hour support or high levels of nursing care, they do not meet the eligibility criteria for the NDIS.
The results of our recent research shed some light on the challenges experienced by the federally funded initiatives that support these younger people who do not have NDIS funding to either move out of or avoid entering aged care homes. Our research indicated that the key barriers to helping these younger people avoid or move out of aged care, given that they are not NDIS participants, are the lack of funding from States and Territories to support them to live somewhere other than aged care, and the lack of appropriate alternative housing that meets their needs. Navigating what little funding and services that were available from the States and Territories was also a challenge because of a lack of accessible information, the complexities associated with accessing this funding, and a fragmented service delivery landscape.
Our research corroborates Winkler’s assertion that substantial expert case management is required to support younger people to make decisions about moving out of aged care homes. We learnt about the importance of the time taken by specialised case managers to build trust and rapport, especially for this group of younger people and their families. These are people who have experienced a level of trauma associated with coming to terms with a significant health challenge, and falling through the cracks of a care system that was not able to appropriately support them.
As a result, those younger people who entered aged care, and their family members, were hesitant and fearful about moving out. Indeed, imagining life outside of aged care was a significant challenge for some younger people. Our research found that even considering alternative options was difficult for some younger people because they felt safe and well cared for in aged care. Thus, support to ensure younger people can clearly understand their options is vital. This process takes time and expertise, and requires long-term, complex case management through initiatives that specifically focus on younger people who are not NDIS participants.
However, time and assistance to navigate other options only works if there are other options to consider. Whilst the NDIA may need to step up for those who have access to the Scheme as Winkler asserts, so do other government departments and mainstream services who have responsibility for the most vulnerable in our society. To address the issues, there is an urgent need for increased and ongoing funding from the States and Territories to fund the full range of services and supports, including home modifications, that younger people who are not NDIS participants need to leave or avoid aged care. It is also necessary to simplify the application processes for NDIS (for those who may become eligible) and other State and Territory funding and supports. Investment in affordable and accessible housing (including transitional housing) and the development of innovative housing models for younger people who are not NDIS participants is needed, with particular attention to those who require high levels of support or nursing care. We welcome the news of further federal government funding to conduct research on how younger people with palliative care needs can avoid aged care homes. We also call for increased budget allocation from State and Territory governments to community-based palliative care for medical and non-medical services to ensure people are assured dignity and choice at the end of their lives.
Overall, it is evident that there is a group of younger people in aged care who are not NDIS participants, and whose circumstances mean they will never be able to access the NDIS under current arrangements. For these younger people, there are little to no sources of support to enable them to live safely, happily, and with dignity in the community. Their experiences reveal several blind spots in current policy and practice, and so it is vital that the specific needs and experiences of these younger people are recognised and addressed in any strategy to move people under 65 out of residential aged care.
