With such little control over the support and care she received, Milena Morrow was in her early 20s before she was able to live a self-directed life.
Fast forward 30 years, and the Chair of Living My Way wants every Australian with a disability to know that they have the power to take the reins and create the life of their choosing.
Born with Spinal Muscular Atrophy, Milena remembers the 1980s; a time when every Australian with a disability had their fates decided for them.
“The concept of people with a disability actually taking charge of their own lives was really an unthinkable concept back then,” Milena said.
“I’m very proud of how far things have come, particularly because the idea of having choice and control was advocated by people with disabilities and we’ve remained committed in the hopes that it will begin to provide the freedom that we are meant to experience as people.”
Now an accomplished author, editor and human rights advocate, Milena's own journey is one that belongs in the history books.
In the early 1980s, the Commonwealth Government invited 24 people with varying disabilities and lifestyles to participate in the Attendance Care Pilot Study (pilot) . This pilot was offering the opportunity for people to take charge of their funding and employ their own people and manage their own care.
Milena was lucky to be one of the chosen few. The pilot allowed Milena and her fellow participants the opportunity to be in the driver’s seat for the first time. Their needs were able to be met, their hours could be adapted to suit their individual lifestyles, and it offered the flexibility, that could be offered by no other, that enabled the pursuit of each participant’s personal goals.
“For a government to actually put out an experiment such as this to see how it could work was revolutionary for the times,” she said.
“In those days, Home Care was all that was available. It was very black and white; bureaucratic. Being with Home Care at that time, people weren’t allowed to go to bed late or wake up very early because that was thought to be unfair and inconvenient for the carer or support worker. The support hours offered were also limited.
“But this pilot model allowed us to employ our own support team with realistic funding to cover our needs. As the employers, it put the control in our hands which meant that we could get up as early as we wanted, whether it be to start work early, go shopping, or simply go out for the day. We could go to parties, live concerts and generally go out with friends and stay out as late as we wanted. This should be the right of every human being. We could make whatever choices and arrangements we wanted to live our lives to the fullest and live it with purpose.”
The pilot changed the way of living for 24 Australians with disabilities, and following on from the experience of freedom, choice and control enabled by the two-year pilot, Milena and her peers took part in a demonstration outside Parliament House in Canberra, led by disability advocate, the late Kevin Byrne AM, to fight for their right to continue managing their funding beyond the two-year pilot expiry.
“You can imagine being a child, and you give a child a lolly, and halfway through sucking on that lolly, you say to that child, “Now give me back the lolly.” The child doesn’t want to give up that lolly because it tastes so good.
“That is what freedom is about. Once you have it, you can’t give it up because it's a fundamental human need and a right.”
The demonstration worked. The government allowed the fortunate 24 to keep their freedom under the allowance model. The participants enjoyed that freedom for several years until that came under threat when the Federal Government passed the allowance model down to the NSW Government. Concerned that their interests would be cast aside by bureaucracy, the participants went to Canberra once again and fought to ensure that their freedom wouldn’t be taken away.
After a successful campaign, the NSW Government decided the model could continue, and at that time in 1992, Living My Way, then known as Allowance Incorporated, was formed by people with disability for people with disability.
“It was always in mind that at some point we would grow it so that many more people with disability could enjoy the same freedoms as we had. We hoped that the concept would spread, that the idea would catch on and the Government would come round and realise that it’s not a bad idea to start making that offer to other people with disability. It's taken a long time, and there is still more work to do.”
Now under the National Disability Insurance Scheme (NDIS), which is based on the same human rights principles of the original pilot study, Living My Way has now grown into a disability service provider offering four service lines that have changed the lives of many Australians.
And while lives have certainly changed for the better since the inception of Living My Way, Milena acknowledges that there is always more to do.
“I believe when an organisation forms with the mindset around people’s rights to have freedom, choice and control, then that remains at the heart of the culture of that organisation.
“Moving forward, we would like to think that we can continue to grow where people can employ great staff, and employ the kind of people they want to have in their homes while. Whom you invite into your home is so important. With the people of your choice, our unique model provides people with the ability to roster the shifts around their goals, worklife, recreational pursuits, studies and so much more.” .
Milena also believes that she wouldn’t have been able to achieve anywhere near as much as she has in her lifetime without the pilot and subsequent attendant care allowance model, and wants to ensure that other Australians with disability have the same opportunities to live as freely as she has.
“There’s no way I could have done what I’ve done, if I had continued to stay with Home Care,” she said. “This model had allowed my husband and me to live in a way that suited us, rather than living our lives based on a rule set by the Government.
“I don’t think many people are aware of the option of employing one’s own support team and the benefits it can bring. More exposure and awareness raising on what Living My Way offers could benefit many more. Education would be beneficial for those who have never considered this option.”