Having a child diagnosed with a learning disability can be a stressful time for parents. There’s the battery of tests that kids go through as part of a diagnosis, as well as the steep and, sometimes, unforgiving learning curve that parents find themselves travelling when it comes to treatment and management.
It’s no surprise that, on top of all of this, navigating the NDIS can be a daunting challenge for families and carers once approval for a plan comes through.
As the parent of a child with autism, Craig Westbury – Distribution and Services Manager at Bcause – and his family learned how to navigate the NDIS effectively as part of ensuring their son could access the most suitable treatment available.
“My son’s school initially identified a need, and we went down several different diagnostic tracks before we got him properly diagnosed for autism,” explains Craig. “You go through a raft of healthcare professionals just to get to that point.”
“The paediatrician who did the diagnosis said, ‘Right, you’re now eligible for a Medicare care plan, so you can start engaging different professional supports. You’ve got 20 sessions and you can split them between psychology, speech pathology, occupational therapy and physiotherapy. How many of each do you want?’ I looked at her and thought, ‘Hang on a sec, we’re the parents – we have no idea what he needs!” Craig laughs. “Shouldn’t you be telling us that we need to go and see a speech pathologist for this, and an occupational therapist for this?”
“Then you add the National Disability Insurance Agency [NDIA] into the equation,” he continues. “Our first conversation with the NDIA went, ‘So what do you want?’ I said, ‘I don’t know. I’m not a medical professional.’ That’s when I ended up on this journey of discovering the level of knowledge need to support this process.”
The changes in how services are now delivered in the disability sector led to the establishment of Bcause – a Melbourne-based organisation that helps provide the families, carers and decision-makers for people living with disabilities access to information. A subsidiary of Bendigo and Adelaide Bank, Bcause clearly communicates the choices families have available to them across a range of disability products and services.
Previously, the traditional service delivery process for people with disabilities relied on government providing the service. With the advent of the NDIS, however, there’s been a fundamental shift from a government-provided market to a consumer market.
“And that was always going to be quite challenging for people,” explains Craig. “We’re saying, you’ve got this funding, we can help you a) find the products and services that are available for you, but b) also help you manage what you’re spending that money on.”
It’s not uncommon in dealings within the NDIS system to come across instances where people have NDIS funding but are yet to spend the money available to them. Craig admits, while the reasons for this are varied and the research into why this is happening is evolving, he has encountered anecdotal evidence that many parents and carers struggle to find the appropriate services for their child.
“Bcause is really about trying to bring a lot of those services together so people can find them,” he explains. “We’re about trying to help people to identify the things that are useful to them.”
TALi and Bcause
It’s important to remember that everyone’s situation is different, and that families and carers should always obtain advice based on their individual circumstances.
“The need for something like TALi might arise where a school or a professional or someone identifies that a child needs some help in a certain area,” says Craig. “And then it’s about finding a product that can help you. The next part is: how do you arrange the funding?”
While this part of the process can be complex, Craig believes that communication, and having a thorough understanding of the type of NDIS package you have, is essential to avoid any pitfalls or unnecessary frustrations in accessing care.
TALi falls under three NDIS categories: Assistive Products; Innovative Community Participation; and Communication and Info. Once again, while every circumstance is assessed on an individual basis, your plan type largely determines under which category TALi’s technology fits. There are three types of plan: self-managed, plan-managed and NDIA-managed.
“Under self-managed plans, I can choose certain products but, if I’m plan-managed, then my plan manager has to make that interpretation,” explains Craig. “Often, people start running into trouble because they haven’t had that conversation. They buy something, and they send it through to the plan manager but then the plan manager advises them they can’t get [what they’ve already purchased] in the plan.”
With NDIA-managed plans, the agency themselves are managing the funds. Under this arrangement, there are more complexities that need to be taken into account, as the providers themselves – in this case, TALi – lodge the claim.
“TALi has to actually put the claim in themselves for NDIA-managed plans, and they’re the only people who can do it. We can’t do it on their behalf,” explains Craig. “That means getting a lot of information from the participants, including a service agreement.
“Some people don’t even know they’re NDIA-managed,” he continues. “So it pays to ask. Otherwise, we work that out as we get there, and then we hand it over to TALi and say, ‘Now you need to look after this person’.”
Bcause is a useful resource for parents or carers of children with learning vulnerabilities looking to access either TALi’s technology or the range of NDIS services now available.
Understanding the type of NDIS package you have, communicating with the right people, and taking the time to know what service you’re engaging is critical to making your NDIS journey less daunting and more rewarding. Your Local Area Co-ordinator and the NDIA itself are great sources of information if you are unsure about how your plan is structured.
“It’s about finding products and services, it’s about helping you purchase them easily but it’s also then about helping you manage your funding going forward.” That’s Bcause in a nutshell.
Want to talk to Bcause about TALi? Contact the Bcause team.