Andrew Wilkie (Clark, Independent) Share this | Hansard source

Yesterday I was delighted to meet Clare Waiss, the Tasmanian representative at the parliamentary carers event. What she had to say there was powerful and worth repeating here, at least in part:

Seven years ago, when our son Felix was born, we thought we understood what parenting would look like. What we didn't understand then was how quickly parenting would become advocacy, caregiving, administration, crisis management and constant negotiation with systems.

Felix lives with a rare genetic condition called ARF1, which has resulted in cerebral palsy, intellectual disability and significant support needs. He is non-speaking, requires assistance 24/7 and relies on mobility aids and AAC devices for communication. But to us, he's just Felix. He's funny, cheeky, stubborn, determined and full of personality. He's also a big brother to his 5 year old sister Lily.

Like many families entering the disability world for the first time, we suddenly found ourselves navigating specialists, hospital systems, therapy providers, education supports and the NDIS, all while trying to process the emotional reality of what our future now looked like.

For families like ours, there is no pause button. When therapies are reduced, children like Felix lose opportunities to build and maintain the skills that give them independence, mobility and connection to the world around them. When support worker funding is cut, families are left scrambling at the last minute, rearranging work, appointments and daily life just to keep everything functioning. When waiting lists blow out, children miss critical early intervention and families remain in crisis longer.

Every policy decision made in Canberra, every legislative amendment and every systems reform will eventually land somewhere very real, at a kitchen table like ours. It will land with parents trying to decide whether they can keep working. With carers already surviving on exhaustion. With siblings quietly adapting around systems that were never designed with them in mind. And with people with disability whose quality of life depends on whether support remains accessible, timely and sustainable.

Clare's personal experience eventually led her to create Care Plus Management, a support, coordination and plan management enterprise which, along with her own family experience, makes her insights supremely valuable. Indeed, in a recent letter to the Tasmanian disability minister, she had this to say, at least in part:

I have many concerns regarding the proposed legislation, however some of my biggest concerns relate to the increasing medicalisation of disability access and support eligibility. From my reading of the Bill and associated material, I am increasingly concerned that participants will effectively be required to demonstrate that all possible treatment pathways have been exhausted before disability support eligibility can be established or maintained. As a parent, this raises some really confronting questions for me. In Felix's case, he has Cerebral Palsy and has previously been assessed by his Rehabilitation Paediatrician through Tas Health as possibly not being an appropriate candidate for SDR surgery. However, another Paediatrician or Surgeon with less familiarity and clinical history of Felix may potentially form an entirely different opinion regarding whether he should undergo the procedure. That is what concerns me most about the direction of this legislation. Children and adults with disability may effectively be forced to pursue invasive and extremely expensive medical procedures with long and difficult rehabilitation timeframes simply to prove that their disability remains functionally impairing despite treatment attempts, even where there is conflicting medical opinion or significant uncertainty regarding the likely outcomes for that individual person.

For some people this may involve major orthopaedic or spinal surgeries, experimental treatments, intensive rehabilitation programs, or medications with significant side effects and limited evidence of long-term functional improvement. Families and participants should never be placed in a position where access to essential disability supports becomes contingent on undertaking high-risk medical interventions in an attempt to "prove" permanence. I worry about what this could mean more broadly for participants with Cerebral Palsy and other lifelong disabilities. Would families be expected to pursue spinal surgeries, orthopaedic procedures, or other invasive interventions in order to establish permanency? At what point does this shift from disability support into requiring families to medically "prove" their child cannot be fixed?

What concerns me further is that this approach simply shifts costs into other already overwhelmed systems, particularly Medicare, the PBS and the public health system, while placing enormous emotional pressure on families navigating incredibly complex decisions regarding their child's care. For many participants, therapies and interventions are intended to improve comfort, maintain mobility, reduce pain, or maximise quality of life, not cure disability. The existence of a possible intervention should not undermine recognition that a person still has a lifelong functional impairment requiring support. I also question where the line is drawn regarding expensive medical treatments, medications or therapies that may not even be fully covered under the PBS. Families living with disability already face enormous out-of-pocket medical costs. We are now potentially moving toward a system where participants will be pressured to pursue extremely expensive treatments, specialist interventions or medications simply to demonstrate they have "tried everything", even where the evidence of meaningful functional improvement is limited or the treatment is not considered clinically appropriate for that individual.

I am also deeply concerned regarding the proposed reduction of funding for social and community participation supports within Core budgets. Whilst these supports are often portrayed publicly as "nice to have" or non-essential, the reality is they are frequently the only mechanism allowing people with disability to meaningfully participate in their communities. The disability community has spent decades advocating for inclusion, accessibility and equal participation in society. We have finally started seeing real progress, inclusive playgrounds, accessible beaches, community events, schools, sporting programs and councils beginning to genuinely consider accessibility and inclusion in planning and infrastructure. On the Gold Coast last week I saw firsthand what genuine inclusion can look like. Free beach wheelchairs are available for families to access without cost or complex processes, allowing children like Felix to participate in spaces that historically excluded them entirely. These initiatives matter because inclusion does not happen naturally, it requires intentional investment, support and accessibility.

The Federal Government has publicly stated that the proposed NDIS reforms are expected to reduce projected scheme expenditure by approximately $35 billion over the coming 4 years. Whilst this is often framed politically as "slowing growth", the reality is that the NDIS is not simply a budget line item, it is a workforce. Aside from areas such as Assistive Technology (Disability Equipment), almost every dollar spent through the Scheme directly funds somebody's employment. Disability support workers, therapists, local area coordinators, support coordinators, plan managers, allied health professionals, administration staff, transport providers and community participation programs will all inevitably be impacted by reductions in funding flowing through the sector. This is likely to have significant broader economic consequences, particularly in regional communities where the disability sector has become a major source of employment growth over the past decade. It is also important to recognise that the disability and care workforce is overwhelmingly female, with women making up the substantial majority of the sector nationally. At a time when governments continue to speak about strengthening female workforce participation and investing in the care economy, these reforms risk doing the exact opposite, reducing jobs, suppressing wages, and destabilising one of the country's largest female-dominated workforces.

For decades, people with disability were largely hidden away from society. Many were segregated into institutions, group homes, or isolated within their own homes because they simply did not have the supports required to safely and meaningfully participate in the community. Over the past 10 years since the inception of the NDIS, we have slowly started to see genuine social change occur.

Disabled people are now visible in our communities every single day, at playgrounds, beaches, sporting events, shopping centres, schools and workplaces. Slowly, the stares from strangers have started to lessen. The whispered 'shh' from a parent when their child asks questions about a disabled person in public has started to lessen. Society has slowly started normalising disability as part of everyday Australian life, because people with disability have finally been given the opportunity to actually participate in society. My greatest fear is that these proposed policy directions risk taking us backwards. If social and community participation supports are significantly reduced, many people with disability will once again become isolated behind closed doors because participation will simply become inaccessible. Families already under enormous pressure will no longer have the support required to safely take their children into the community. Adults with disability will lose opportunities for connection, independence and visibility within society. I worry we are slowly moving back toward a system that values segregation over inclusion because inclusion is considered too expensive.

The NDIS was never supposed to simply keep disabled people alive. It was supposed to allow people with disability to live meaningful lives as visible and valued members of Australian society. Once disabled people disappear from public life again, society stops designing for them, thinking about them and including them. History has already shown us where that leads.

Unsurprisingly, Clare also has much to say about plan management—she's a plan manager—which, regrettably, I'll need to truncate heavily here for the lack of speaking time:

I remain extremely uneasy about the Government's position on Plan Management and the broader messaging around fraud within the sector.

Plan Managers are already one of the most highly scrutinised parts of the scheme. We operate under registration requirements, auditing obligations, compliance standards, financial accountability frameworks and direct NDIA oversight. There are currently only approximately 1,443 registered Plan Managers nationally supporting more than 460,000 plan-managed participants across Australia, despite the broader NDIS market consisting of more than 260,000 active providers across the sector. In that context, registered Plan Managers already represent a relatively small and highly regulated subset of the overall disability workforce.

More concerningly, the direction of the reforms appears to be moving toward consolidation of Plan Management into a small number of very large multinational or corporate providers. From an NDIS perspective, I worry this risks fundamentally undermining participant choice and control, one of the core principles the scheme was built upon. Smaller community-based Plan Managers often provide highly individualised support, understand local services, identify emerging safeguarding concerns early, and assist participants to navigate increasingly complex systems in ways that large, centralised providers simply cannot replicate at scale.

I believe another critical issue within the proposed reforms is the ongoing public narrative being presented about the role of Plan Managers, including statements made by the NDIS Minister which do not accurately reflect either the legislation or the operational realities of Plan Management. For example, there have been repeated suggestions that Plan Managers are driving unnecessary plan reassessments or financially benefiting from early plan reviews. However, Plan Managers cannot and have never been able to request a plan review on behalf of a participant under the legislation.

Similarly, the suggestion that Plan Managers financially benefit from participants seeking earlier reassessments is fundamentally incorrect. Early plan reviews create significantly more administrative work, manual processing, participant communication, compliance monitoring and financial risk for Plan Managers, without any additional payment being received.

I could go on and list my own concerns, like the financial inability of the Tasmanian government to fund the additional services that will be expected of it. But, you know what, I think I'll stick with Clare because she's done a better job than I ever could have done. I'll give her the last word:

I fully appreciate the complexity of managing a scheme of this size and absolutely recognise the importance of ensuring the NDIS remains financially sustainable long term. My son Felix will rely on the NDIS for the entirety of his life, which means I have a deeply vested interest in ensuring the Scheme continues to exist and remains viable not only for him, but for future generations of Australians living with disability.

Families like mine understand better than anyone that sustainability matters. However, sustainability cannot come at the expense of the fundamental purpose and philosophy of the NDIS itself. I strongly believe the current direction risks shifting the Scheme away from one centred on inclusion, participation, independence and quality of life, toward one focused predominantly on cost containment, functional minimisation and restricting access to support. The NDIS was never intended to simply deliver the bare minimum required to keep disabled people alive. It was designed to allow people with disability to participate meaningfully in society, exercise choice and control, and live with dignity as valued members of their communities.

I say thank you to Clare. She gives voice to countless people.

See this speech in context