• 10 November 2016

Consumer Directed Care

A simple idea driving a major revolution

How to start a revolution

Sometimes the most significant revolutions come about from the simplest of ideas: turn things on their head.

What if human beings are not above nature but a part of it?

And what if those who are disadvantaged are allowed to make decisions for themselves about their care instead of having those decisions made for them by someone else?

What if those who are disadvantaged are allowed to make decisions for themselves?

Disruption that empowers

Harvard Business School professor Clayton Christensen, the guru of disruptive innovation, says that in business terms disruption replaces an existing market, industry or technology, and produces something new, something better, something more worthwhile. It is at once destructive and creative.

At its best, even empowering.

Damien Kenny is 24 years old and lives in Wavell Heights in Brisbane. He shares a house with Ray. He calls himself Damo, and describes himself as having very long legs and autism.

"I'm planning my own future and strengthening connections with my family.

"Before, things were okay, but I didn't really do much. I was a victim of the house I was then living in. Bad memories. People cared about me but nothing changed. I liked eating and watching television, that's it."

Damo's mother, Therese, said his carers were not suited to him, that he needed staff that wanted to be with him, to treat him fairly and give him a go.

After he moved into his current home in July 2015 he started building up his own support team.

On 1 July 2016 a major revolution – and one hell of a disruption – began taking place when people with a disability, through the agency of the National Disability Insurance Scheme, were given the opportunity, and the money, to decide who would treat them and who would care for them.

Before, people with a disability relied on agencies who were funded by government for their treatment, and often for their care as well.

It has been hailed as a bright new dawn for community service as a whole.

As The Age editorialised in July this year:

"Many have dubbed the NDIS the largest social policy reform since Medicare, and its significance cannot be underestimated. At its heart the scheme aims to empower the disabled and their carers to participate more fully in society and the economy. This is a just and compassionate goal that we can and should all support."

But why is this movement towards disruption suddenly so welcome and suddenly so important? And how does this relate to the real-world challenges Not-for-Profit organisations (NFPs) now face in supplying community services?

The largest driver for change is the realisation that public sector budgets will not sustain current levels of service. Australian governments are enthusiastically embracing an international trend towards consumer directed care, or CDC.

The best expression of CDC in Australia is the National Disability Insurance Scheme. CDC is now also available for in-home aged care packages.

But how did this revolution start?

Listening to clients

“The best thing is that Mum feels happier about me.”

The first sign of what was to become CDC appeared in the early 1970s in the United States. By 1974, a limited form had appeared in Australia in the shape of the Carer Allowance, money the government gave to carers of people suffering from a disability or some other medical condition.

This cash-in-hand allowance was still not given directly to the person suffering the disability – there was no framework for consumer choice or control.

And this is where CDC promises to change things for the better. It offers consumers not just a choice of provider, but a choice of services as well. Assuming prices are not regulated, this enables competition which in turn drives efficiency gains and encourages flexibility.

At its heart, CDC is not about money. It is about listening to clients when they say what they need rather than telling clients what it is we think they need.



Damo says he is free now to do more things.

“I can go inside and outside. I have no boundaries or limitations. I have more fun, and more things to do.

“I have a goal-planning tool called PATH with lots of things I want to do, and I’m putting down lots of red ticks as I achieve things. It’s been fun ticking so many of them off.

“I didn’t think it would happen."

“My biggest goal was when Mum and I got to be together more.”

Therese says her son now has better access to his rights and freedoms, and that he now has a chance to have a say in his own life. She says things are improving all the time.

“We are now better at getting the best person suited for different types of shifts; training for staff has been great and hopefully keeps current as Damien’s needs change.”

Damo says his staff is good to him.

“They help me reach my goals and connect to the world.”

Therese says the staff make up her son’s ‘support team’, and bring their own unique resources and skills to his life. They use their strengths to Damien’s advantage.

But there are still some challenges, Damo admits. “Sometimes my body just goes to sleep and won’t do the things I want it to do.

“And communicating my needs to people is sometimes hard.”

“I’m going to enjoy things, and be my own best friend.”

But like anything exciting and new that gives us more freedom and more choice, there is a downside. Think of how information technology has revolutionized communication and learning and entertainment, and then think of how big companies have cornered search engines and social networking.

Similarly, CDC comes with a big challenge, especially for NFPs such as UnitingCare. How do we switch to such a radical funding model without losing the positives of our existing model? How do we preserve the priceless, yet non-marketable values that we bring to community service?

Life is sweet

However UnitingCare decides to meet that challenge, dollars now matter more than ever before.

Cost competitiveness is critical to ensure the viability of services and to provide access to people on lower incomes.
As a values-based organisation, money is essential for us to maintain our presence in the marketplace. There is a genuine risk that commercial operators will not provide for those with limited resources, special needs or non-mainstream cultural practices, or for those who wish to remain in their communities outside population centres.

“I’m going to enjoy things, and be my own best friend.”

Damo's goals are many and diverse.

"I want to build stronger relationships with family and friends.

"I want to get involved in the local music scene.

"I want more involvement in the community, including paid and volunteer work.

"I want to learn to surf and rock climb.

"I want to ride a jet boat and a dune buggy, I want to go on a roller-coaster, and I want a helicopter joyride."

Therese says he sets himself very high goals, but he's been ticking them off at a fast rate.

Damo says he won't put a ‘number one' next to the thing he enjoys doing the most.

"Life is sweet. I like being with nice people. And the freedom I have is good."

UnitingCare will never join a ‘race to the bottom', but will remain agile in an increasingly competitive market.

International experience suggests that the introduction of CDC invariably results in community services being chiefly delivered by commercial businesses, often impacting on the quality of care given to the most vulnerable in society. In Australia, most social services are still delivered by NFPs. In the UK, where CDC has been in place for some years, 90% of community service is provided by for-profit organisations.

UnitingCare will never join a ‘race to the bottom' but will remain agile in an increasingly competitive market.

We will make sure that cost-effectiveness is not achieved at the expense of quality of care, that clients and workers are protected with strong regulation, that prices are set according to the real cost of services including remote area provision and fair wages and conditions for professional staff, and that government assistance ensures all vulnerable people have adequate care.

Consumer protection foremost

In its submission to the Productivity Commission Inquiry into Introducing Competition and Informed User Choice into Human Services, UnitingCare made several key observations regarding CDC:

  • Consumer protection and well-being must come first and foremost.
  • External monitoring is essential to ensure consumers are not short-changed.
  • Consumers must be educated how to make choices that best suit their needs.
  • Consumers are entitled to receive what they pay for.
  • Cooperation and collaboration between providers that benefits consumers should be encouraged.
  • No consumer who cannot pay, or has a reduced capacity to pay, will be disadvantaged.
  • No consumer should be disadvantaged because of location or situation.
  • Because CDC requires a dedicated and well-trained workforce, providers should avoid savings that impact on staff-training and numbers.

My plan … is to be happy

UnitingCare's collective resources, reach and expertise can be harnessed for action. Cooperating for strategic benefit and leveraging the size, scale and quality of our network for the common good of the people we serve is possibly our biggest asset.

That being the case, we believe providers and governments have a responsibility to work together to ensure that we meet not only our customers' requirements, but their expectations as well, and that they are made part of a fair and socially inclusive society.

Damo says that since the change he has been able to do more things with his family.

"I have been making my own choices. The best thing is that Mum feels happier about me."

Therese says she is part of his team

"I've gotten to know him better and I'm blown away. He has opened up many eyes to what is possible for people to do."

Damo says his life is much fuller than ever before.

"My plan for the future is to keep living and be happy.

"I'm going to enjoy things, and be my own best friend."

Share this story

Follow us