Andrew Leech: Better system within reach to support children with autism and developmental delays

We’re about to see some major changes to the way we support children with developmental challenges like autism and developmental delays. What the Government has announced so far feels like just the tip of the iceberg, and the lack of detail on how it will be rolled out leaves me with cautious optimism. We know that the earlier we can intervene in a child’s development, the better the long term outcome. Children who are late to walk or talk, who struggle to learn or socialise, or who fall behind their peers may not necessarily have a diagnosis like autism (and often don’t) but they still need support with therapy and education for their family. For many, regular sessions with an occupational therapist or speech pathologist over a defined period can lead to lifelong outcomes. I’ve seen firsthand how adaptable and responsive children’s brains are to this kind of care. But without support, a child who can’t communicate effectively may face long-term challenges with learning, school engagement, self-esteem, and later, career opportunities. The flow-on effects to families, schools, and society carry hidden costs that are difficult to quantify. Investing in early intervention isn’t just good economic policy, it’s the right thing to do for children and their futures. There are three key factors I believe have contributed to the current situation and that any NDIS reform must address. 1. The State Child Development System Is No Longer Fit for Purpose In WA, the Child Development Service is meant to provide early access to therapy, but it has become increasingly difficult for families to navigate. Waitlists are often more than a year long. During that wait, families tell me that they usually hear nothing — no advice, no interim support, just silence. And sure enough they end up coming into us (their GP). One year is a long time in a child’s life. Many eventually give up and turn to the private sector, but for those who can’t afford private therapy, the next step is applying for the NDIS. This surge in NDIS applications wasn’t solely about diagnosis. It was often a desperate attempt to access any support at all. While the Federal Government now appears ready to take a new approach, the State system also demands urgent attention. The previously announced $39 million investment was a starting point, but we’ve yet to hear how that funding was used, and I haven’t seen any meaningful improvement in wait times. It’s clear that this funding falls well short of what’s needed to rebuild a service that families can genuinely rely on. 2. Private Therapy Costs Are Rising Many families tell me they simply can’t afford private allied health therapy. Fees have gone up. Understandably so, given inflation and the demanding nature of this kind of work, but this doesn’t take away from the fact that the out-of-pocket costs are now out of reach for many. There’s also a shortage of providers, so demand remains high even as fees increase. While most allied health professionals are dedicated and trustworthy, I do occasionally hear stories from families who feel taken advantage of. Such as being charged full fees at an hourly rate for short letters to schools, or additional fees for brief phone updates. In the face of this, some families pull out of therapy altogether. Others apply for NDIS funding just to keep going. This is another reason behind the need for a new approach. We can’t allow affordability to be the barrier between a child and their potential. 3. GPs Are Underused in Co-ordinating Care This brings me to the role of GPs, which I believe is a key part of the solution. GPs already co-ordinate care plans (now called GP Chronic Condition Management Plans), but they’re limited. Medicare rebates cover only $52.95 per service for a maximum of five allied health sessions per year. This is barely enough to make an impact. I can’t recall any change to this rebate or number of sessions since I first became a GP 10 years ago. Yet these plans are designed to encourage co-ordinated care, goal-setting, and regular reviews. In saying all this, we could easily build on this model as GPs and allied health professionals are very familiar with how they work already and use these plans day to day.It wouldn’t be hard to develop a new early intervention plan for children with developmental delays aged 0 to 6, developed and managed by GPs, that includes: at least 12 sessions per year with allied health professionals; a tripled Medicare rebate for families and; a bulk-billing incentive for therapists, similar to what GPs receive for bulk-billing children. This would encourage quality providers to participate, reduce out-of-pocket costs, and place GPs once again at the centre of care, allowing us to track progress, co-ordinate with therapists, and support families more meaningfully. What Needs to Happen Now The Government has yet to clearly outline how this new model will work, and that uncertainty is creating real anxiety in the community. Families have been asking me: Will their children still receive support? Will new barriers to access emerge? If NDIS funding is cut, how long will it take before they can access care again? Every new policy takes time to implement, but without a clear transition plan, this gap could be detrimental to the children who need help now. We can’t forget that behind every policy decision are real children, real parents, and lots of emotion in trying to do the best they can with what they have. If we truly want to create abetter system — one that’s more efficient, sustainable, and equitable, then we need to start with what we already know works: early, consistent, co-ordinated care. Empower and include GPs in this new policy whilst properly funding allied health so that families aren’t stretched and don’t have to fight for essential treatment and care. If done right, this could be an opportunity to build something better for the next generation. Andrew Leech – FRACGP, MBBS, BSC, Dip Child Health