The March of 'Consumer Directed' Aged Care

While preparing a paper for my presentation at this years Asian Conference on Ageing and Gerontology in Japan I was left pondering how all this 'consumer directed care' is going to work in reality given the enormous constraints of government regulation we function under.

I see great merits in a residential aged care resident (or a community home care client) having ultimate control over the care and services they receive and who is privileged to provide that care, but I am left wondering how is it actually going to work. Not just work on paper. Not just work in the minds of those in Canberra. Not just work in theory. But how in reality is it all going to work?

To work, there needs to be balance. All sides need transparency and boundaries. Consumer, provider and government need to know what the rules are, what the limitations of the system are, what the costs are, who is going to pay and ultimately what standards can be realistically expected.

Its all very well for me to go into McDonalds because I can choose to go into McDonalds. But I cant go into McDonalds and expect McLobster. Nor can I expect to go into McDonalds and get a cheeseburger when I have only 10 cents. Possibly, I could go to the 3 Michelin star, Restaurant Gordon Ramsey in London and ask for a Big Mac but I would pay $500 for it.

The delusion is consistently perpetuated as the higher end of town builds ever more magnificent Homes with glitzy advertising and platinum promises. The problem with this is that while everyone sees the flash surroundings and endless promises, nobody hears the costs involved and thinks this should be the standard for everyone. Better homes, more staff, better food, a 24 hour concierge, a movie theatre, a swimming pool, more choice ... it all comes at a price - a price that the government says (in a whisper) it can't afford, the general public either can't afford or is unwilling to pay and who is left holding the can? Who else but the aged care provider who is dealing with unrealistic expectations day in and day out while running on the smell of an oily rag because no one wants to pay.

Choice and decision making must be informed and cannot be based upon some delusion that I can get the world for 5 cents.

At the moment, the market is ill-informed and unrealistic. The absence of clear messages about reality is deafening and does nothing to ease the concerns of consumers or protect aged care providers from a lifetime of torment trying to manage unrealistic expectation.

Tell it how it is ... don't dance around the subject hoping it will go away ... or worse still hold up the fake fa?ade that you are providing adequate funding and regulations to deliver true consumer directed care and let aged care providers cop the boot to the head when reality hits home and they don't get what they think they deserve (and what you have said they can have).

Unless things change dramatically, the only winners I can see is the Aged Care Complaints Commissioner who will have to expand ten fold to cope with the demand of disgruntled "consumers".

While we all get to see how many complaints the Aged Care Commissioner deals with each year, it would be great to see how many cases result in absolutely no action and the only outcome achieved is that the approved provider is harassed and distracted from providing care to those in need. I call on senators to ask this question in senate estimates and see what response you get.

The home care market has already seen an explosion in 'fee for service' care and I have already seen websites where you can pick your own carer from a cast of thousands like buying items off eBay. Given the listed prices for a 'carer' are $25 an hour, I wonder how much these people are actually being paid to deliver services to the aged and vulnerable in the community. Maybe they work under the 7Eleven Enterprise Agreement. I wish my staff cost me $25 an hour!

I have also seen adverts for home care 'franchises' where presumably the franchisor is the approved provider and the franchisee is working under licence. Next we will see 'Jims Home Care' and we can all pack up and go home.

Come to think of it 'Jims' would make the perfect home care provider - Jims Home Care can provide the care, Jims Housekeeping can clean the house, Jims Lawnmowing can take care of the gardens, Jims Dog Wash can take care of the pets and with a simple outsourcing arrangement, Uber can take care of transport.

And then there is residential care.

Unless there is a significant change in government policy and the regulatory system is all but rewritten, Consumer Directed Care in residential aged care will not work because aged care providers hands are perpetually tied. Currently the biggest obstacle for aged care services wanting to implement true "person centred" or "consumer directed" care and services is the government itself.

If you try and openly implement a menu that meets resident requests - the NSW Food Authority (or its other state equivalents) will investigate you and will threaten you until to stop.

If you allow a residents family to bring in culturally appropriate food and someone complains - both the NSW Food Authority and the Aged Care Complaints Commissioner will investigate.

If you try and deliver on an advance care directive and 'someone' disagrees and complains - the Aged Care Complaints Commissioner will investigate you and if the resident has not already passed, you will be stopped.

The biggest issue here is the Aged Care Act 1997 has no clear definition of a 'representative'. In fact it is defined three different ways in three different parts of the legislation. You don't have to be a guardian or hold powers of attorney, you don't have to be a spouse or family member, you can just 'have an interest'. So basically anyone can direct a provider to do anything based upon the fact they are the residents "representative" and on that basis alone they can lodge a complaint with the Aged Care Complaints Commissioner about anything that you do.

If you try and implement a restraint free environment and someone falls (and someone complains) - the Aged Care Complaints Commissioner will investigate you and then the Australian Quality Agency will investigate you because the problem is deemed "systemic". Of course it is systemic, you are attempting to implement a systemic restraint free policy. The fact is that no matter what you do or how good your falls prevention strategies are, if you don't tie people up and drug them to an inch of their life, some will fall over. I defy anyone to show me a completely restraint free service and never have a resident fall.

The Quality Agency doesn't even have a consistent policy on what restraint is. Having been involved in accreditation visits in different states, the interpretation of restraint varies from state to state and assessor to assessor. In Qld (or in northern NSW when you are assessed by Qld) being in a secure dementia unit was enough for them to consider the resident restrained and require written authorisation while the view in NSW is completely different.

The Commonwealth's guidelines on restraint use in residential aged care are not even factually correct - a fact that I bought to the attention of the Senior Nurse Advisor and the First Assistant Secretary when I worked there 4 years ago. Have they been amended? Of course not.

If you try and provide a homelike environment and a staff member complains the room is too cluttered - SafeWork will investigate you.

If you choose to provide things like microwaves and fridges in residents rooms, the paperwork, monitoring, testing and inconsistent reviewing by government departments and agencies brings you to tears.

If you try and stop unscrupulous scumbags from exploiting your residents and try to ban them from your home - the Aged Care Commissioner will investigate you and make you let them in.

After banning a 'friend' who was financially exploiting a dying resident and trying to get him to change his will so they would inherit his multi million dollar property, I received several telephone calls from the Aged Care Complaints Commissioners office pressuring me to allow her to visit. In the end, I was forced to comply under threat of a full investigation and at one stage needed police officers to have her removed when they arrived with a solicitor, new will in hand.

I wonder if the Department of Education would over-ride a school principals decision to stop a suspected paedophile from entering a school? I think not, but apparently the potential exploitation of children is considered far worse than the actual exploitation of older Australians.

Even when the resident, the family and the provider are on the same page and in agreeance, if an anonymous complaint is lodged - the Aged Care Complaints Commissioner will investigate.

In a recent case I was informed that even though the legal guardian, the doctor and the local palliative care team were happy with the end of life care provided (in accordance with the residents ACD), the delegate would decide whether the Commissioner will investigate and this may not be in line with the wishes of the guardian. They even requested documents on cases that the Commissioner had already reviewed and dismissed until I pointed out the previous case numbers and asked them to consult their own internal system before requiring me to collate, copy, scan and email hundreds of pages of documentation again.

Way back in 2005 I completed a thesis on the experience of men entering residential care which highlighted many negative systems that resulted in institutionalisation. In 2008 I published a paper on the institutionalisation of nursing home residents and how our practices were consistent with in jails and convents based on the work of the prominent Canadian-American Sociologist Erving Goffman. Unfortunately due to the continued restrictions imposed by government departments and the way they interact with providers, many of the issues highlighted continue to exist today.

The current system, while shouting the politically popular rhetoric of 'consumer directed care' from the rooftops, it is still geared to and encourages institutionalisation of both residents and staff and it needs to stop. Serious reform of the residential aged care system is needed before any dream of consumer directed anything works in the aged care space.