This article was originally published in The Australian Hospital and Healthcare Bulletin.
8 January 2016
Young people in aged care – an Australian crisis
With the recent Parliamentary Inquiry into young people living in aged care, Samantha Kennerley, Youngcare Chief Executive Officer presents her thoughts on the housing crisis and complex funding arrangements between state and federal government.
They say necessity is the mother of invention, and when you see the needs of your loved one so poorly met as they slip through the safely nets that were designed to help, your drive to remedy the situation can push you to accomplish amazing things.
At the age of only 26, Queensland resident Shevaune Conry was diagnosed with multiple sclerosis (MS). Her husband David, who provided support and care for her, was astounded to find that once her MS has progressed to a point in which she needed 24-hour care and could no longer be cared for safely at home, there was nowhere appropriate for her to go. Shevaune was just 33. David and Shevaune realised the harsh and unfair reality, that the only option for young people with high care needs, is often aged care. It was then that David rallied his three mates – Mathew Lawson, Nick Bonifant and Simon Lockyer – to establish Youngcare, driven by the goal of helping all young Australians with high care needs to live life with greater choice, independence and dignity.
Youngcare is one of Australia’s largest national disability charities that receives no recurrent government funding. Our mission is to keep young people out of aged care, by helping to avoid new admissions as well as assisting people to transition back into the community. Youngcare seeks to achieve this through the development of purpose-built accommodation, distributing grants, undertaking Australian-first research and providing information and referral phone service that helps young people and their families navigate the health system. Youngcare is also at the forefront of advocating for change in the ways disability services are delivered throughout Australia, and are actively involved in informing national policy in this arena.
Youngcare’s ten years of dedication to helping solving this crisis has produced a collection of data and information that can elaborate on efficient ways to divert premature entry into aged care. With three accommodation solutions completed, apartments and a share house are home to 28 residents, 17 rounds of funding in five states and territories, over $2.7 million distributed in grants, and over 10,000 calls to the Youngcare Connect phone service, a wealth of experience in the field of housing people with high care needs has amassed. Youngcare’s partnership with Griffith University has also produced an evidence-based model of care and best practice in building accommodation facilities that cater to the needs of people with profound and severe disabilities.
What has characterised Youngcare’s success in the sector is the refusal to point the finger at any one government department at either state or federal level for being responsible for more than 7,000 young people still living in aged care, instead acknowledging the many contributing factors of this complex issue. Youngcare’s recent submission to the Senate Inquiry into young people in aged care recommended immediate and long term changes based on experiences helping people avoid and leave aged care, nine of which aligned with the recommendations put forward by the Senate Report. The problem of young people residing in aged care requires a whole of community approach from both government and non-government organisations. It is a problem that is felt throughout Australia, but disproportionally by young people with high care needs and their carers who represent some of the most marginalised members of our society.
A close analysis of the reasons someone enters aged care can provide surprisingly logical antidotes. Youngcare highlights three distinct situations that are generally the origin of a young person entering aged care, and recommends ways in which these can be avoided:
- Sudden decline in condition or traumatic accident
- Post hospital discharge
- Carer burnout
A sudden decline in a person’s condition or suffering a traumatic accident is possibly the most common reason younger people will enter aged care. The contributing factors behind this are often two-fold: the house in which they reside is no longer built to accommodate their needs; and because their personal care needs increase and outweigh the paid or unpaid care available. For people suffering a traumatic injury, no existing care is currently available, and for those with young families, this is especially difficult for their spouse to absorb the extra care. This situation often evolves into a crisis where families are left without the resources or means to continue to live as a family unit, and aged care is reluctantly sought as a last resort.
One key area of concern is that most people experiencing this have acquired their disability as an adult, which means their knowledge of the disability industry often lacks understanding of where, when and how to get the help they need. Put simply, you don’t know what you don’t know, and in a crisis situation, when the only answer to your call for help is aged care, it can be difficult to spot alternatives. This scenario is one Youngcare encounters often, and is regularly reported in grant applications to Youngcare for funding. Based on known experiences, Youngcare has made recommendations on how to lower the risks of entry into aged care and boost the resources available.
The key recommendations Youngcare advocates in this situation are;
- Immediate access to funding for home modifications. While all states and territories have their own subsidised funding scheme, all areas have lengthy and drawn out waiting times to access any available funding.
- Subsidised or fully funded and immediate access to occupational therapists. Waiting times for allied health professionals to assess and recommend home modifications exacerbate the crisis situation and are a physical barrier to even applying for funding.
- Care packages for people with progressive illnesses designed to increase with time. Though all progressive illnesses show different patterns of decline, there is one constant – care needs increase as conditions progress. And while this may seem obvious, it is not an aspect taken into great consideration by any state-funded care system. People known to their respective state-funded service provider will almost inevitably wait extensive periods of time to access any extra funding, despite our very clear understanding of how conditions decline.
- Extensive bursts of care for people with newly acquired disabilities. Often the shock of an accident for a family can contribute to the difficulty they face in taking on the role of carer. From living a normal life, to suddenly being given the role of an unpaid, and full time carer, can lead to severe psychological distress and isolation. Our experience has shown that vast majority of people in this situation want their loved one to stay at home, but feel ill equipped. If families were provided the opportunity to learn alongside professional carers that tapper off over time, younger people suffering traumatic injuries would have a notably lower level of entry into aged care as a result of a crisis situation.
Instances of young people going into aged care following a long hospital stay are also a common occurrence. A lack of disunity between government departments is partially responsible for this. State-funded health and disability services operate independently of one another despite the obvious need for an overlap, and in general show little initiative of working collaboratively. While admissions into hospital for people with high care needs are always due to an illness or a sudden decline, their ability to recuperate to a point of returning home is often severely diminished and they tend to require rehabilitation services once their immediate health issues are met. Hospitals operate to provide acute care services and patients no longer needing acute medical care end up using the limited resources hospitals have available. With poor communication between disability and health departments, where families are unable to take their loved one home immediately they are often put under immense pressure to remove their loved one, and aged care is usually the only available suggestion. Typically this is suggested as an interim solution until an alternative arises.
Youngcare has seen this happen repeatedly, and finds the most concerning aspect of this situation the suggestion that placement into aged care following a hospital stay will only be temporary. All evidence suggests that this is seldom the case, and worse still, even a very short stay in aged care can have lasting negative impact. It is significantly more difficult to assist someone to leave aged care, than it is to prevent them from entering it.
Based on our involvement in these cases, Youngcare makes the following recommendations to prevent admissions into aged care following a long hospital stay.
- A strong and interconnected relationship between health and disability services, throughout all states and territories. This is pivotal to preventing new admissions from hospital into aged care. While the two sectors remain disassociated from one another, aged care will continue to present as an option.
- Purpose built slow stream rehabilitation units. The importance of this is crucial to not only helping people to eventually move home, but also in reducing long term costs of care. There is ample evidence to suggest that placement in aged care contributes to a decline in patients conditions, because they provide neither adequate therapies, and also because the model of care offered is tailored to helping people in their twilight years. There is neither the intent nor the ability to help a younger person recuperate or rehabilitate in aged care and then return home.
Lastly, and certainly the most preventable reason for younger people being placed into aged care is the result of carer burnout. This situation is disheartening for two reasons. Firstly because this is almost never spontaneous; it is generally the end of a long battle with cries for help and support left continually unanswered. These situations are predicable, and in this way, ought to be easier to prevent. Secondly, if families are driven to forfeiting guardianship of their loved one whom they have dedicated a life of caring for, this is indicative of the level of distress they have reached. As a community, this is truly shameful that this is has been allowed to happen.
The problem of carer burnout implies an obvious solution; more funding for respite care and more respite facilities. However, Youngcare acknowledges that this is a problem the National Disability Insurance Scheme (NDIS) aims to rectify, and a wide scale interim solution before the full roll out is unlikely. In light of this, Youngcare continues to see this scenario and will continue to assist where possible, and can offer a short term remedy through the Youngcare At Home Care Grants (AHCG) program.
For young people at risk of entry into aged care, Youngcare has offered AHCG up to the value of $10,000 for respite, equipment or home modifications since 2009. Requests for respite historically tend to dominate application requests. Where Youngcare identifies high and immediate risk, and if the potential for assistance to keep the applicant home for at least one year is evident, the grant is successful. Many applicants reapply annually, with ample evidence suggesting this is an effective short term solution, with success lying in requesting a respite plan from the applicant. Youngcare stipulates clear evidence of the format in which respite hours will be used, and evidence that the carers are awarded a sufficient break. This can also mean the difference between carers maintaining a job, and consequently a mortgage and a house. The ramifications of providing microgrants have a wide-reaching domino effect not only for the young person and their carers, but their wider networks as well.
What has historically been a road block to accessing community housing for many people in aged care is their lack of access to paid supports. However, the coming of one of Australia’s biggest social reforms, the NDIS, should cover people under 65 in aged care. And for the first time, there will be up to 7,000 young people with high care needs, with sufficient funding for their care, but nowhere to live.
Prevention is always better than a cure, and for people who are already in aged care, leaving is substantially more difficult than avoiding entry. Youngcare specialises in building age-appropriate accommodation solutions designed to accommodate young people with high care needs while maximising their choice, independence and dignity. There will always be more calls to enquire about how to move to a Youngcare apartment or house, than Youngcare can ever build, but our ideas are replicable. Both Youngcare’s evidence-based design and model of care are valuable tools and resources for consumers, service providers, and investors to draw on to develop appropriate, best practice services that will make a difference to the lives of young people with high care needs.
Samantha was appointed Youngcare CEO in April 2014. Her passion for social justice, together with personal experience supporting a close family member following a traumatic brain injury, drives Sam’s belief that all young Aussies deserve young lives. Sam has held Director positions both in Australia and the UK, with extensive experience in the corporate deals arena.