Opinion piece published in the Mercury, 10 October, 2017
Some families are left frustrated and out of pocket when trying to access the NDIS, writes Andrew Wilkie
PARENTS trying to access the National Disability Insurance Scheme are hitting a bureaucratic brick wall that’s leaving them at wits’ end and thousands of dollars out of pocket.
They emphasise that overall the NDIS is a wonderful reform, but that the process of trying to push through an impenetrable and impersonal bureaucracy to sign their children up and access funding has left them exhausted and frustrated.
There’s no doubt that the NDIS is a historic change that will improve the lives of thousands of Australians with a disability, empowering them to make life choices that would once have seemed inconceivable.
Parents I’ve spoken to describe being able to tailormake a program for their children that includes individual therapy and life skills that will set them up for an independent life.
“It’s a huge improvement,” the parent of one young man told me.
“We’ve been able to design a weekly program that includes a good balance of group and individual activities.
He’s learning life skills including shopping and cooking. He volunteers at a local animal shelter and regularly attends mainstream gyms and exercise classes to keep fit. Before the NDIS, funding a program like this would have been out of our grasp.” However it’s not all smooth sailing. Indeed parents attempting to access the NDIS for their children are struggling with an impenetrable bureaucracy that’s too often causing months of delays and unnecessary angst for a group of people who already have a lot on their plate.
To access NDIS funding you need an individualised plan so you need to talk to a NDIS planner.
Problem is you phone the NDIS call centre and then wait for a planner to get in touch but your calls, emails and letters go unanswered.
It can take months to even get to talk to a NDIS planner, let alone to activate a plan.
And there’s no back-pay, so until the plan is activated participants have to go without or pay for their own support, even though they’ve already qualified for the NDIS.
I raised these concerns in Question Time in the federal Parliament recently and thankfully the Minister for Social Services, Christian Porter, promised to try to assist people suffering bureaucratic delays.
So, if you’re struggling with the NDIS bureaucracy, please get in touch with my office so I can report back to the minister.
But this isn’t the end of it.
The bureaucratic battle isn’t over once an NDIS plan is finally activated because parents are often finding plans incomprehensible.
For example one set of parents, both university educated, needed somebody familiar with the intricacies of the NDIS bureaucracy to translate their son’s plan.
“It’s impossible to relate the ‘support areas’ headings and descriptions in the plan to the supports that we discussed in our planning meeting,” one parent said.
“In one description it mentions incontinence aids which our son does not need.
Surely it would be easier for everyone if the details related completely to the individual?” Trying to adjust a plan to include a new therapy or support has also proved near impossible because of the difficulties in getting hold of a NDIS planner.
“I would probably not bother to try and change a plan,” said one parent who spent months fruitlessly trying.
“It’s just a waste of precious time and energy, energy better spent caring for my family.” For families using a financial intermediary, changes to the participant portal – now through MyGov – have meant that the person paying the bills no longer has access to information about the remaining funds.
This means that the parents have to take on this job again, which in part defeats the purpose of having a financial assistant.
Parents reported a much more user-friendly set-up in the trial phase of the NDIS, when each participant had an assigned planner who could be easily contacted by phone or email between face-to-face meetings.
It was a simple process to adjust a plan, remove funding for items you no longer needed and switch the money to items you actually needed.
Frankly I think there’s a clear case for giving people a direct line to the planners whose decisions have such an impact on their lives.
There’s also a strong argument for providing backpay to participants who have been approved for the NDIS but are out of pocket due to bureaucratic delays in activating their plans.
The bottom line is that it shouldn’t be this hard.
Indeed if ever there was a government program that should be user friendly, then this is it.
Fortunately the Federal Government seems to be mindful of the difficulties and a number of ministers have now given me the time to talk about the issues in some detail.
Time will tell if they’re fairdinkum about fixing things and ensuring the NDIS is as good as it can be.