By DARIA IMPIOMBATO
John is a big fellow. He is chit-chatting over brunch with his old mates, on a drowsy Saturday morning in Geelong West, and he looks cheerful, fun, at ease. At first glance nothing much seems wrong in his life.
But when the brunch is over, lifting up from his chair, John grabs his crutches: only then you notice that he is missing his right leg.
His tone changes while he recalls the dramatic moments that altered the course of his life.
It was 1983 and John was in his 20s. He had a steady job in his pocket and a bright future. Until one day, driving his car like any other day, John ended up off the road.
He crashed.
Compound fracture … they took him to the hospital.
Gangrene … they amputated.
Just like that, John woke up and his leg was missing.
You can tell from his trembling, low voice that talking about the accident still makes him uncomfortable.
“Back then there was absolutely no support,” John says. “There was no counselling, no follow-up; once you were discharged from hospital you were on your own.”
The system today is much better, he admits, and he believes that the National Disability Insurance Scheme (NDIS) would be the next step to better include people with disabilities in their own communities. If only it worked properly.
The NDIS was advertised as one of the biggest changes in the Australian public policy area, one that would not only improve the lives of hundreds of thousands of people with disabilities, but also cut the costs of the support system.
Its main purpose was to promote independent living and give people with disabilities the chance to make their own choices.
Instead of being delivered services prearranged by the government disability agency, under the scheme they would receive money and then buy the services they need.
With an estimated budget of $26 million, the scheme gave high hopes to disabled people and their carers, despite leaving many questions unanswered.
When I first heard abut the NDIS I thought ‘Fantastic! Finally!’ But [inclusion] doesn’t seem to be happening,” John says.
In December last year, John contacted the NDIA (the agency that implements the insurance scheme) to draft a plan, and they gave him an appointment.
“I actually went to the office here in Geelong, and when I presented my paper they said ‘No no, we don’t see people, we do everything over the phone'.” And that is how John’s odyssey started.
He had to draft his original NDIS plan on the phone, but he didn’t understand much of it.
“Now I work for the Department of Human Services, so I have a bit of understanding about bureaucracies, but there was no explanation,” John says.
He noticed that the person on the phone sounded uninterested in his problems. Frustrated about how the conversation was going, he opted for letting an agency take care of his situation, abandoning the self-management option.
But problems surfaced when someone broke into his house. The culprits weren't found, and John decided he wanted more control over who had access to his home.
“I had cleaners that were put in place by the agency, but I didn’t know who they were," he says. "I wanted to employ somebody that I could trust.”
John contacted the NDIA again …
“Somebody will be in contact with you shortly,” they said. So he waited, and kept waiting for a response as the months rolled by.
There are more issues affecting the NDIS. For John, one of them is the fact that many smaller providers are not registered under the scheme.
An example is the Riding Develops Abilities Victoria (RDAV), an organisation that offers equestrian activities for the disabled. Ariella Stone, their state office manager, says it would be too expensive for them to become an NDIS provider.
The reason, she says, is that administration costs related to the scheme would increase their participant fees.
"Considering our waiting list is two to three years in the metropolitan area, Government funding would allow us to provide our program to more individuals with disabilities,” she says.
In a media release published on October 19, following the report on NDIS costs undertaken by the Productivity Commission, the Victorian Government pointed to the failings of the NDIS rollout, and the challenges that the delivery date, set for 2020, imposed.
“The Federal Government has underfunded the scheme and the rollout is failing its promise for too many people,” read the release.
However, state Disability Minister Martin Foley underlined that the report also recognised some successes, in cases where “early investment and appropriate staff have seen high-quality services delivered to people for the first time”.
The NDIS started in July last year. After receiving hundreds of complaints from participants, the NDIA took notice and in the past year has made a series of changes aimed at tackling the biggest issues.
NDIA chief executive officer Robert De Luca, in a statement released on October 18, said that the agency was committed to making continuous improvements to the whole scheme.
City councils, together with the organisations that are already registered as NDIS providers, are showing signs of a change of attitude. Many, like the Glen Eira City Council, are organising meetings and Q&A sessions, listening to people’s requests and helping them take the best decisions for the success of their plans.
Will the changes be enough to make inclusion a new reality?
Dr Piers Gooding, post-doctoral research fellow at the Melbourne Social Equity Institute, says it is very important do define the concept of inclusion.
In a project he collaborated on – 19 Stories of Social Inclusion – he tried to show that “inclusion is about developing relationships, making a contribution, belonging”, Dr Gooding says.
Sharing stories of ordinary life, the aim of the project was to present people with disabilities simply doing typical things, which today is not common, he adds.
The main drivers of change in the life of these 19 people were not necessarily services targeted towards disabled people. For Dr Gooding, it is more important “that families, individuals and services are informed about the many different pathways to achieve a sense of integration”.
The scheme’s focus is related to finance more than to social justice. “At the moment there is a far greater emphasis on what is the necessary support and what the state can afford,” he says.
Dr Gooding points out that the scheme’s legislation was born under a UN Convention on the Rights of People with Disabilities. Now, however, it is not made clear that human rights should be a priority for the NDIS.
Dr Gooding’s suggestions for better results are simple: giving families and individuals more resources to manage the funds, and showing them what is possible. But also, he adds, making sure services do not take over a person’s life, and improving disabled people's engagement in their communities.
Asked for predictions about possible outcomes, he says that while some might profit from it, others could be left out, and for a great majority the situation would stay unvaried.
“I’m not against the scheme, I think it can work, but it’s necessarily limited,” Dr Gooding says. “If people don’t know what to do with the money, they risk further segregating themselves by committing the same mistakes of the past.”
John is one of the lucky ones, who managed to access the NDIS system and solve his problem independently, but it took time and effort to get his plan finalised.
He is aware of the fact that other people out there might not be as lucky.
John finally received a call from the NDIS four months after he asked for his plan to be changed, and after a huge number of phone calls and follow-ups pushing for a response.
“There are people who can’t read or write, so if they send them the plan in the mail they can’t read it,” says John.
He thinks there are a lot of procedures that still need improvement, as he did not perceive any willingness from the NDIA to understand the real needs of single individuals.
“It’s almost like if you don’t fit in any particular pigeonhole, they throw their hands in the air, that’s what it’s like.”