Q: Who are ‘young people in nursing homes’?

‘Young people in nursing homes’ are people under the age of 65 living in, or at risk of entry into, aged care facilities.

These young people have an acquired disability with complex support needs that often bridge the aged care, disability, health, housing and community services sectors.

Characterised by disabilities acquired largely as a result of catastrophic injury or through progressive neurological diseases, these young people require service responses from not one arm of the service system, but multiple, including health, disability and sometimes aged care, amongst others.

Having an able bodied life before the acquisition of a lifelong injury or illness means our members have different expectations concerning service responses to those living with a congenital disability.  They expect to access the rehabilitation needed to restore health and independence; and to live in the community as other able bodied young people do.

Approximately 6500 young Australians with disability presently occupy a not insignificant 5% of residential aged care beds.

Q: How is it possible for a young person in Australia to end up living in a nursing home?

There are any number of paths that result in young people finding themselves living in a nursing home.

Discharge from hospital

One of the most common circumstances is following admission to acute hospital care.  They may have been admitted for any number of reasons, such as:

  • Catastrophic acquired brain injury (ABI) or spinal cord injury¬¬ through an accident, (non-compensable) motor vehicle accident, assault or near drowning.
  • Stroke
  • Heart attack, or
  • an ‘episode’ or sharp decline in a progressive disease such as Multiple Sclerosis or Parkinson’s Disease

Acquired disabilities such as these are not covered under a workcover or motor vehicle accident scheme, and therefore the young person is forced to rely on the family income, and/or more likely the grossly underfunded state disability system to support and provide for all their needs.

Once acute care is no longer needed, the hospital, understandably, looks to discharge the person as soon as is possible in order to free a bed for the next person in need. At this point a problem is presented - the young person is not able to return to their previous circumstance for one or multiple reasons:

  • Constant medical assistance is needed to maintain their health
  • Extra carer support is needed for their daily care and living activities
  • The family home is not adapted for their needs - accessible bathrooms, stairs etc
  • The family does not have vital and expensive equipment, such as a hoist or pressure mattress, available to them

Applications for support can always be made to the state government disability services, however unfortunately they often simply do not have the funding available. They will not be able to provide enough funding for the young person to live at home or elsewhere with their family and community. There are limited supported accommodation places available with very long waiting lists.

So, where is the young person to go?  They cannot stay in the hospital forever and they do not have enough support or funding to move back into the community.  Systemically, the disability systems are asked to support the very high needs of these young people, and this is just not possible for a system that is chronically underfunded.

When this happens the ‘default’ option becomes aged care.  Unfortunately, for both the young person and the nursing home, although they often do their best to support these young people, aged care is not set up to support these young people.  Their purpose is to support older people with steadily declining needs. They just do not have the equipment, staff levels or medical knowledge to look after the health and wellbeing of a young person with fluctuating and very individual needs.

Other paths to aged care

Other common paths resulting in aged care entry include:

  • The primary carer, often parents, becoming too old or unwell to continue in the intensive caring role that they may have had for decades.
  • The young person lives in a rural area and cannot access the appropriate accommodation or support they need to maintain their health.
  • The young person, their family and carers are not adequately informed on the options available. They may have been inadvertently misinformed, simply do not know where to find the information, or that it even exists!

Very often, once a young person is placed in a nursing home, disability services considers them much less of a priority for funding or placement in more suitable accommodation.  They then find themselves without enough support for their physical health needs, resulting in constant health crises and admissions to hospital,
not to mention the almost complete absence of connection with their friends, community and family.

 Q: I am currently in hospital. I am being told that my needs are now too high to live in the community and that I will have to move into a nursing home. What options are available to me?

It’s a very confusing and traumatic time when someone is suddenly told they are unable to return to their previous life. It is difficult for an individual and their family to source the correct information urgently required to make an informed choice; and to access the funding and support needed.

There are a multitude of reasons why someone may be told their only option is to move into a nursing home. It is very important for you to be aware of all the options before deciding for yourself that aged care is the most appropriate.
Determining factors will include:

  • Where you live – state, metropolitan or regional
  • Your age, and the age at which you acquired your disability, if appropriate.
  • The details of your disability – physical, cognitive, psychological and behavioural complications etc
  • Family circumstances
  • Your support needs – ongoing clinical needs, support services such as therapies and community access
  • Funding availability

There are often a number of possible avenues to explore in regard to potential options. Some common options may include:

  • Living at home with the support of the family and professional carers
  • Shared supported accommodation
  • Aged Care - with supplementary funding to meet your needs as a young person in a nursing home.

If you are unsure of your options and would like further information, please contact us

Q: I am in a nursing home, and I am not receiving enough carer support, equipment, therapy or community access. What can I do?

When a young person is placed in aged care they discover that their disability funding gets taken away.  The nursing home is either seen to be now wholly responsible for all of the care and support, or disability services do not have the funds to add ‘extra’ support.

Unfortunately however, aged care is funded for older people in the end stages of life.  Older people require much less ‘active’ support than a young person with a complex disability, and the nursing home is not equipped to provide vital “extras” such as additional staff to assist with clinical needs, rehabilitation therapists and community access.

If a young person enters aged care without additional input and funding from Disability, they will be treated like a older person; often left in bed for most of the day while they wait for ‘their turn’ to get up; with insufficiently trained staff to monitor health, little to no rehabilitative therapy, and no communication with people their own age.

If you or someone you know find yourself in this position, there are potential avenues for you to follow. This may include a review of your disability funding and/or application and access community groups.

If you would like to discuss this further, please contact us to discuss your circumstance

Q: I am caring for someone with a disability and need to access some support. What funding is available?

You may have been caring for someone with a disability for a long time because there is no other option, and no one else who is able to care for them as well as you can.

It is important to know that there are government and community services available in all states that will be able to listen to you; provide advice, and possible funding for a range of respite options.

You can access a list of community agencies on our links page, or, if this does not help, contact us to discuss it further

Q: How can I get in touch with other people in the ypinh community?

Social media is an excellent way to connect with others in the ypinh community.

Access our Facebook and Twitter pages, where you can contact organisations and individuals active in your area. You are welcome to join in discussions, raise questions and talk about your own experiences.