Australia’s care system is complex and almost impossible for the average person to navigate, says Michael Gill

Australia’s aged care sector has been exposed as requiring a total overhaul, so in October 2018 a Royal Commission was established.  

Currently in Australia, most people aged over 65 live in private housing. Approximately 10% live in non-private residential facilities. Public and private providers and most older people who receive social care support the government’s current policy of “ageing in place.” Charitable non-government organisations deliver the bulk of community services for older people in Australia.

I write not as an expert in care for older people, nor as someone benefiting from the services available. Instead I write as an observer of the system’s performance based on experiences involving family and friends.

In Australia doctors, hospitals, and community care are controlled by federal and state based authorities. Quite separate from this is institutional care for the elderly and mental health services, which are managed in what seems to be a piecemeal manner across the country. The federal government has a long running policy of home based care and it funds a national programme called Home and Community Care.[1] Each state has separate services, eligibility criteria, and access options. If you think this sounds like a system which is complex, layered, and almost impossible for the average person to navigate, then you’re right!

In 2014 the federal government established the My Aged Care portal and a new Aged Care Financing Authority for older Australians in an attempt to reduce this complexity. The number of aged care home care packages under the government’s Living Longer Living Better policy more than doubled.

A flood of media coverage has detailed the abuse associated with residential aged care over the past few years and it was the resultant public outcry that led to the establishment of the Royal Commission into Aged Care Quality and Safety.

Service delivery in residential aged care is in crisis due to inadequate staff numbers, poor pay and conditions, and the consequent inability to recruit properly trained staff. In addition, Australia has a wide range of volunteer, charity, smaller services, and professional services scattered throughout the community, especially in metropolitan areas. Access to these “in-home type” services is very much by discovery, word of mouth, and willingness (in most cases) to pay. The important point here is that there seems to be no real method of determining quality of service or service reliability.  

I discovered that it was not unusual to find multiple individuals delivering the same paid service for my 92 year old mother in law in different ways. The constant change of staff made her anxious and distrustful, and eventually she cancelled a number of services.

Underpinning this national mess is the lack of personal planning. Culturally, most Australians appear to be resistant to planning for their own advanced aged care and the manner in which they wish to live out their last days—although we do have compulsory superannuation. Australia has very few educational services available that address this.

Consequently, older people who are in need of care and their families roll from crisis to crisis until they knit together some ad-hoc solution or get supported by a knowledgeable service provider.This is usually at significant cost if the individual goes private. Some professional aged care, fee based advisers are available to help navigate the system—although only if you can find them.

The longer someone can stay in their own home the better. Few would argue against this. I observed my father in law spend the last 18 months of his life in a private nursing home because his wife could not manage his care. While the staff’s intentions were excellent and the care provided was good, my father in law was in effect a prisoner. He could not leave on his own. This same restriction applied to my father in his last year, which caused us severe anxiety. The institution argues that they have a duty of care, but where are the rights of the individual?

When severe dementia sets in, the situation becomes very complex, especially if there is any hint of violence. The Australian media have exposed cases where chemical restraint and physical harnessing have been used. This is shocking and upsetting for the families involved. Poor staffing may make alternatives impossible to implement. But where do basic human rights sit in this context? We don’t imprison or restrain people without due process, but this does not seems to occur in the Australian aged care sector.

My observations are that it is very difficult to determine the quality of service delivery over the longer term in an aged care institution or for services delivered at the person’s home. Where the person can afford huge fees, care can be excellent, but the vast majority of the population do not have this option. Private versus public institutional care has the tell tale signs of plush carpet versus linoleum; a single room with en suite, versus a room for four with shared facilities; and meals planned by a dietitian versus basic, almost inedible fare.

In the in-home setting, the armies of volunteers, paid service workers, and overstretched services mean that it is pot luck as to whether consistent reliable services will be delivered. I recall offering to pay double for a particular service to be delivered to the home of my relative, but there were simply no trained providers in the area.

One of the most confronting experiences I have had in recent years is to see much younger residents living in institutional care. They are the forgotten few. They usually have a severe mental health condition, are severely disabled, or both. Few relatives or friends visit and they are effectively locked in their environment, often deprived of communication and human love. This raises the whole issue of quality of life and is something that the commission will need to address.

The federal government has started audits and inspections of aged care institutions and, as a result, has started closing down a number of care homes. The commission has a wide ambit and is charged with examining the quality of care provided to older Australians, and the extent of substandard care. Their task is enormous and very emotional. I wish them well and I hope that the situation for older Australians will improve because one day, I may also be in need of it.

Michael Gill is a BMJ patient reviewer and founder of the Charity Dragon-claw.org.

Competing interests: None.

[1] Three federal government funded community care packages, CACPs, EACH, and EACH-D, are designed for older people who are eligible for residential care but who prefer to remain in the community and are safely capable of doing so. A fourth, the Home and Community Care (HACC) package is designed to allow people to operate independently in the community and can be provided across a wider age range. The HACC package contains 19 different service types.