Planning meetings under Australia’s National Disability Insurance Scheme (NDIS) are meant to empower people with disability – but many participants tell a different story. Instead of collaboration and understanding, too often they face planners who don’t “get” their disability or needs, leading to inadequate plans driven by cost-cutting rather than care. This is especially true for those with intellectual or psychosocial disabilities (mental health-related disabilities). Below, we explore the difficulties participants encounter, share their stories, and call for change.

The High-Stakes NDIS Planning Meeting

NDIS planning meetings are critical: this is when a participant sits down (often with a Local Area Coordinator or NDIA planner) to discuss their goals and support needs, which will determine their funding. For participants, everything hinges on being heard and understood in that meeting. Unfortunately, many describe these meetings as frustrating and disempowering. In some cases, planners seem unprepared or insensitive, turning what should be a person-centered conversation into a superficial box-ticking exercise. As one state guardian office observed, “Involvement of participants in planning meetings is often superficial and patronising.” They noted that people with disability can feel anxious amid imposing bureaucratic processes and power imbalances, especially if communication is difficult. In theory, planners should facilitate and encourage the participant’s input – setting goals, articulating needs, identifying supports – but in practice, many participants feel talked over or not truly listened to. A Queensland advocacy group even reported that nothing improved after raising these issues: “This departmental awareness is disappointing as nothing is changing for the better.” They warned that some planners use their authority “in a detrimental way to the participants they are supposed to be supporting”. Clearly, the planning process is not living up to the NDIS promise of choice and control when participants are treated as bystanders rather than active decision-makers.

Planners Lacking Understanding of Disability Needs

A core problem is that many NDIS planners simply do not understand the disabilities and support needs of the people they are meant to assist. This is especially true for intellectual and psychosocial disabilities, which may be less “visible” or straightforward than physical impairments. Participants and advocates frequently report that planners (and other NDIA staff) lack training, expertise or insight into these conditions. The recent official NDIS Review heard that “a major concern with NDIS is the widespread lack of understanding about what psychosocial disability means”, as well as confusion about intellectual disabilities and cognitive impairments. One submission bluntly noted that NDIS workers often have “inadequate knowledge” of the needs associated with intellectual disability. This knowledge gap has real consequences: planners may misinterpret medical reports, underestimate necessary supports, or set inappropriate goals. The Victorian Mental Illness Awareness Council (VMIAC) raised alarms that NDIA delegates making plan decisions “lack the qualifications or experience to interpret… the implications of functional capacity” described in clinician reports. In other words, untrained planners often fail to grasp what a doctor or therapist recommends, especially when nuances aren’t explicitly spelled out. VMIAC urged that NDIA staff must recognise their own limitations and seek clarification rather than making uninformed judgments. Too often, that hasn’t happened – and participants end up with plans that don’t meet their needs.

For example, “many adults [with intellectual disability] reported feeling underprepared for the processes of planning,” and struggled to use the official language NDIA expects to describe their needs. Imagine having to frame your daily challenges in bureaucratic jargon – a tall order for someone with a cognitive impairment. Meanwhile, some participants observed that the NDIA staff themselves didn’t understand intellectual disability well, creating a double bind where neither side fully connects. The result? Miscommunication and frustration. What should be a person-centered plan can become a poor fit. Researchers note that a “lack of understanding of mental illness can lead to [NDIS] plans that are more relevant for a person with a physical disability” – essentially, participants with psychosocial disability getting one-size-fits-all plans that ignore the nature of their condition. All of this erodes the trust in the planning process. As one advocate put it, NDIS decisions often feel “ill-informed” and even “ignorant”, leaving participants worse off.

Intellectual Disability: Communication Barriers and Frustration

Participants with intellectual disabilities face unique barriers in NDIS planning. Many have difficulty with complex information, literacy, or communicating abstract needs – yet the NDIS process hasn’t fully adapted to that reality. Adults with intellectual disability commonly report that they feel unsure of NDIS processes and walk into planning meetings underprepared. The planning meeting may bombard them with questions or forms of wording they don’t understand. One scoping review found they “experienced difficulty employing the correct language [expected by NDIS] to describe [their] needs and abilities,” as well as trouble understanding how to use their funding or navigate NDIS bureaucracy. In short, the system speaks a language that many people with cognitive impairments simply don’t speak – and planners aren’t always equipped to bridge that gap.

This is where a skilled planner could make all the difference. If planners had strong training in communication strategies (like easy-read materials, visual aids, or patience in listening), they could help participants express themselves and truly capture their needs. Sadly, participants say this is hit-or-miss. Some planners appear rushed or follow a script, leaving those with intellectual disabilities confused. As noted earlier, effective participation needs to be “managed well to maximise the participant’s input”. However, many planning meetings fail to accommodate cognitive and communication needs. Participants might nod along without fully understanding, or hesitate to “speak up” about needs – especially if they’ve been taught not to question authority or feel intimidated by the setting. Advocates observe that “communication difficulties faced by many people with disabilities exacerbate” the power imbalance in these meetings. The consequence is that crucial supports can be overlooked. For instance, a person with an intellectual disability might not mention needing daily living support if the planner’s questions aren’t tailored to draw that out. Or they might agree to a plan that severely underfunds their supports simply because they didn’t comprehend they could ask for more.

Families and carers often have to intervene to ensure the person’s needs are recognised – but not everyone has an able advocate by their side. It’s vital that planners have disability-specific training, including understanding how intellectual disability affects communication and decision-making. Yet as mentioned, multiple reports indicate NDIA staff often lack this knowledge. The NDIS Review has recommended that frontline staff receive ongoing disability awareness and trauma-informed training to fill these gaps. Moreover, disability orgs like AFDO argue planners should thoroughly read participants’ reports and histories before the meeting, so they are familiar with the person’s circumstances. Too frequently, participants arrive to find the planner hasn’t even reviewed their file – forcing the individual (who may have an intellectual impairment) to explain their entire life situation from scratch. This is not only inefficient but also distressing. To truly support people with intellectual disabilities, NDIS planners must do better: take the time to understand the person, use accessible communication, and involve supporters as needed. Otherwise, these participants will remain at a disadvantage in a system meant to empower them.

Psychosocial Disability: Stigma and Misjudgments in Planning

Participants with psychosocial disabilities (ongoing mental health conditions that cause disability) have likewise experienced systematic misunderstanding in NDIS planning. In fact, people with mental illness were only fully included in the scheme later on, and “initial planning focused on physical and intellectual disability, failing to recognise the unique needs and challenges” of those with psychosocial disability. This legacy of being an afterthought still haunts NDIS participants with conditions like schizophrenia, bipolar disorder, PTSD, or severe depression. Many planners (and the broader NDIA) do not have a solid grasp of how psychosocial disability can fluctuate or how mental illness impacts one’s life. One participant, “Patricia,” explained that if people “properly understood psychosocial disability, there would be less confusion” about who qualifies and what supports are required. Instead, participants face scepticism or arbitrary barriers. For example, individuals have been asked to repeatedly prove that their mental illness is permanent – undergoing fresh psychiatric assessments or providing new letters every year – even when dealing with life-long conditions. “The last time I looked, none of those things go away,” said one mother, frustrated that her son with a moderate intellectual disability, cerebral palsy, and epilepsy was told to get a cognitive assessment at age 24 to justify his supports. The constant need to re-prove a disability is demoralising and absurd for psychosocial conditions, too. It stems from a mindset that perhaps the person might “recover” and not need support, which isn’t how psychosocial disabilities typically work.

Crucially, a lack of psychosocial awareness leads to bad planning decisions. The University of Sydney’s Centre for Disability Research noted that “inappropriate NDIS plans” often result when planners don’t understand mental illness – plans end up looking like they were made for someone with a purely physical disability. For instance, a plan might prioritise daily living aids while ignoring the participant’s need for ongoing therapy, social support, or crisis intervention. One common complaint is that NDIS planners may deny or limit psychological therapy hours, perhaps assuming short-term counselling is enough or that such support should come from the health system. Participants have had essential mental health supports removed or swapped out for cheaper alternatives. In one harrowing case, a woman with PTSD and major depression found that her NDIS plan cut funding for her psychologist and support worker, against her doctors’ advice. The plan instead offered only an occupational therapist, who was “of no assistance to me but would be cheaper for the NDIS,” she said. “The NDIS should not place their own bureaucratic expediency over a human being’s welfare,” she pleaded. When she appealed, an NDIA delegate tried to split hairs by attributing her needs to different diagnoses just to deny parts of her support – a move that demonstrated “an appalling lack of knowledge about mental illness,” leaving her traumatised. Although that decision was eventually overturned on review, “the damage is done,” she wrote, noting that the stress and harm from fighting the system had a lasting impact.

Many participants with psychosocial disabilities echo this sense of trauma. Instead of being helped by the system, they feel harmed by it. One participant described the NDIS processes as “negligent, dangerous and unforgivable” in how they affected her mental health. “I entered a system designed to help me & I have ended up worse because of it. That is a disgrace,” she wrote, expressing profound distress. Such strong words underscore how the NDIS planning experience can retraumatize people, especially when planners are dismissive or ignorant of mental illness. Participants report feeling like they’re not believed about their needs, or that they’re being treated as “difficult” when they request psychosocial supports. There is also a sense of stigma – a belief among some planners that psychosocial disabilities are not “real” or permanent. VMIAC has noted a culture of discrimination where psychosocial participants’ supports (particularly capacity-building supports like therapy) are cut under “inaccurate assumptions” that these are not needed long-term. In reality, consistent therapeutic and community supports are often what keep someone stable and functioning. Removing them to save costs is counterproductive and cruel, likely leading to a decline in the person’s condition.

The good news is that advocates are pushing for change. Mental health organisations have called for a dedicated psychosocial stream in the NDIS with planners who are specifically trained in mental health. They also want more flexibility in plans to accommodate the ups and downs of mental illness, and better recognition that support coordination is key (many psychosocial participants need help to actually use their plan effectively). The NDIS Review’s final report reinforces these ideas, urging trauma-informed practice and staff who can respond appropriately to participants’ mental health needs. In short, the system must adapt – the people shouldn’t be forced to fit a system that doesn’t understand them.

Cost-Cutting at the Expense of Care

Underlying many of these issues is a troubling trend: decisions driven by budget pressures rather than participants’ real needs. In recent years the Australian government and NDIA have been fixated on NDIS costs, and participants are feeling the squeeze. The average plan funding per participant actually fell by 4% from 2020 to 2021 – a decline that disability advocates say “confirms [the] government is seeking to rein in costs… by reducing individual plans.”. The NDIA insists there’s “no directive” to cut plans, but story after story suggests otherwise. Around 2021–2022, reports emerged of an NDIA “cost-cutting task force,” and thousands of participants saw their supports suddenly reduced at plan reviews. In fact, appeals of NDIS decisions spiked dramatically – quadrupling in a year – as participants fought back against unfair cuts. The NDIA even spent ~$22 million on legal fees in one year to contest participant appeals, which gives an idea of how adversarial things have become. As one ABC headline put it, the agency was accused of being “at war” with the very people it’s supposed to support.

A mother is appealing an NDIA decision that slashed her 10-year-old son’s NDIS plan by more than half – a cut that sharply reduced his access to vital therapies. In her case, the NDIA told her the requested supports were “not value for money,” leaving her little choice but to fight for her son’s needs in the tribunal.

Indeed, many families have faced sudden and baffling funding reductions. In Queensland, Sarina McCarthy opened an email to find her autistic son Kaden’s plan had been cut by over 50% – from $42,000 down to $17,500. “They just saw Kaden’s funding was not value for money and [said] what I was asking for was unnecessary,” she recalled in disbelief. Essential supports were stripped away: Kaden lost a third of his speech therapy hours and half of his psychology sessions. Now Sarina is representing her 10-year-old at the Administrative Appeals Tribunal, essentially having to beg for the return of support that professionals deem critical. This scenario is playing out across Australia. Another mother, Kim, shared how her adult son Oscar’s plan was “drastically” cut, gutting the supports that had kept him thriving. Overnight, Oscar’s weekday activities were halved, his weekend program dropped to one weekend a month, and his specialised gym access ended. “It’s basically cutting Oscar adrift from everything that we’ve just established,” Kim said. “There’s not enough funding for him to keep up the programs… he does every day.”. Oscar’s mother was told their failure to spend all funds during a COVID lockdown year justified the cut (a claim the NDIA officially denies). She doesn’t buy it – and points to countless other families she knows who have had their plans “decimated” for dubious reasons. The human toll is immense: Oscar has been left “in limbo,” his progress stalled, and his family back to constant worry about the future.

These cost-driven cuts don’t just harm individuals; they betray the very purpose of the NDIS. The scheme was sold as a guarantee that people with disability would “no longer have to fight” for basic support – yet here they are, fighting harder than ever. As Kim poignantly put it, “We’re back with our little bowl like Oliver, going ‘Please, can I have some more?’”. The NDIS’s promise has been broken. Advocates argue that what’s saving money in the short term will cost more long term – people losing supports now may require crisis care or face deterioration that necessitates even greater support down the line. More importantly, no cost savings should come at the expense of people’s wellbeing and dignity. Participants are not statistics on a balance sheet; each cut plan represents a person’s life becoming a lot harder. As one participant said, “Appropriate support is what keeps me well & less of a financial burden… [yet] the NDIS focuses only on my limitations and reinforces trauma”. Cost-cutting measures that ignore individual needs ultimately defeat the scheme’s aims of inclusion and empowerment.

The Human Impact: Voices of Participants

To truly grasp why this matters, one must listen to the voices of those living through it. These aren’t just bureaucratic problems – they’re human lives being affected in profound ways. Take the anonymous woman with psychosocial disability who wrote a submission about her NDIS ordeal. She described how over three years, “the NDIS caused damage to my psychological health while they learn[ed].” Each misstep, delay, and denial took a toll. By the time she wrote her story, she was exhausted and traumatised. “The actions of the NDIS towards me have been negligent, dangerous and unforgivable… I entered a system designed to help me & I have ended up worse because of it,” she revealed. This individual had already endured workplace bullying that led to PTSD and depression; she turned to the NDIS for support, only to feel bullied by the system itself. Her mental health worsened with every confusing process and each “unintelligent… ill-informed decision” by a planner that she had to contest. It reached the point where she told the agency: “I don’t want to be harmed by the NDIS anymore… If [they] don’t get their act together soon I… will cease being a participant.”. Imagine that – being so hurt by a support scheme that you consider walking away from support entirely. Her plea was simple: “I’m a human being who needs help now.”

Then there’s Kaden’s family. A 10-year-old autistic boy who had been making strides with early intervention suddenly has half the therapy he did before. His mother sees the regression already starting: “If he is missing out on weekly speech therapy… he will regress over time,” she worries. She’s not only juggling caring for Kaden and his two autistic brothers, but now also acting as a lawyer in appeals – a role she never wanted, forced on her by a system that inexplicably deemed her son unworthy of the support he was previously approved for. Or consider Oscar’s story: a young man with multiple disabilities who was promised a stable, supported life via the NDIS, only to have the rug pulled out. The stress on his aging mother – who for years felt “we don’t have to fight anymore” – is crushing. “I’m just so tired of fighting and proving how amazing this young man is, but that he needs support to truly realise his potential,” she confided. These personal stories highlight the anxiety, heartbreak, and sense of injustice that thousands of NDIS participants and families are experiencing.

In each case, the pattern is similar: participants feel the system cares more about budgets and rules than about people. They encounter planners who lack empathy or understanding, meetings where they aren’t heard, decisions that defy medical advice, and a complaints/appeals process that is daunting and under-resourced. As one advocate observed, “there’s just too much red tape… it’s too hard to navigate and it’s quite stressful – not just for me, but for people with disabilities all around Australia.”. These voices are calling for the NDIS to remember its founding vision: to give people with disability choice and control over their supports, so they can live an ordinary life. When participants say they feel “like a guinea pig” for an unfeeling bureaucracy, it’s clear the NDIA has lost sight of that vision.

A Call for Change: Putting Participants First

The struggles outlined here are not secrets – they have been raised by advocates, inquiries, and participants themselves for years. The good news is that change is possible and there is momentum building to fix these issues. The comprehensive NDIS Review (2023) has acknowledged many problems and made strong recommendations. It calls for greater transparency, consistency and fairness in planning, and for participants to be given more support throughout the process. One promising idea is to create a new role of “NDIS Navigator” – a single point of contact with real disability expertise who can guide a participant from access through planning and implementation. This would replace the disjointed handoffs between intake, planners, and LACs that often leave people repeating their story endlessly. Importantly, the Review insists that “front line staff should have the right skills and training… [and] work in a trauma-informed and culturally appropriate way,” responding to each participant’s unique needs. This means comprehensive training on intellectual disability, mental health, communication strategies, and person-centred planning – exactly what participants have been asking for. As one submission succinctly put it, “More training for all NDIS employees [on] how to work with people with psychosocial disabilities [so as] not to cause unnecessary stress, harm & trauma” is urgently needed. The same goes for understanding intellectual disability and complex needs.

Another key change must be shifting the agency culture. Participants need to be seen as partners, not adversaries or cost centres. The NDIA should adopt the attitude that “if people are struggling with the system, that’s on us to fix”, rather than blaming the participants. When plans are made, the participant (and their family or advocates) should be consulted and respected at every step. It’s telling that advocacy groups recommend participants be allowed to review a draft plan before it’s finalised, to catch mistakes or omissions. That kind of collaborative approach would prevent so many nightmares down the track. Furthermore, decisions to deny or reduce supports should come with a clear, plain-language explanation and a conversation – not a surprise email with no context. Accountability is crucial: if a planner makes a decision that contradicts evidence from doctors or therapists, they should be required to explain their reasoning (and be open to reconsideration). Participants shouldn’t have to run to tribunals to be heard.

Finally, the government must address the cost-cutting pressures head-on by affirming its commitment that the NDIS is not simply a budget to be hacked back, but an investment in people. The current federal administration has signalled an understanding of this, with the new NDIS Minister stating they will examine the scheme’s “long-term pressures” more thoughtfully. Putting disability advocates and people with lived experience in leadership roles – such as the appointment of former Paralympian Kurt Fearnley to chair the NDIA board – is a positive step. But words and leadership changes must translate into action on the ground. Participants will judge the NDIS by their planning meeting: Does the planner treat them with respect? Do they feel understood? Does their plan actually meet their needs? Until we can answer yes to these questions for the vast majority of people, the NDIS will fall short of its promise.

In conclusion, the difficulties NDIS participants with intellectual and psychosocial disabilities face in planning meetings are real and pressing. Poorly trained planners and cost-driven decisions have left too many without the support they need, undermining their opportunities and quality of life. We have heard the anguish and anger in participants’ own words – but also their hope that the system can do better. It’s time to heed those voices. An NDIS plan should never be a source of trauma or injustice; it should be a foundation for a better life. Achieving that requires NDIS planners who appreciate each participant’s disability and needs, and who make decisions based on compassion and evidence, not penny-pinching. It requires treating participants as experts in their own lives and genuinely partnering with them. As the participant from Queensland pleaded: “During this review… listen to participants as they have lived the experience… not as an observation.”. If the NDIA and government take that message to heart – prioritising participants over cost-cutting – then the NDIS can still fulfil its tremendous promise. Lives are depending on it.

References:

• Patricia’s feedback to the NDIS Review on widespread misunderstandings of psychosocial and intellectual disability.
• Submission to Joint Standing Committee on the NDIS (VMIAC) noting lack of qualifications among NDIA decision-makers and unjustified plan cuts for psychosocial disability.
• Office of Public Guardian (Tasmania) commentary on participant involvement in planning being “superficial and patronising,” highlighting need for skilled, compassionate planners.
• AFDO Submission to NDIS Review recommending planners read participant reports and get proper training before meetings.
• Academic review finding adults with intellectual disability felt unprepared for NDIS planning and that NDIS workers lacked knowledge of intellectual disability needs.
• Sydney Univ. analysis of NDIS and mental illness, noting lack of understanding leads to inappropriate plans for psychosocial disability.
• First-person participant submission describing trauma from NDIS processes and cost-cutting replacing needed supports with cheaper alternatives.
• ABC News reports on NDIS funding cuts: Oscar’s plan reduced despite permanent disabilities; Kaden’s early intervention funding slashed as “not value for money”.
• The Conversation analysis confirming government cost-containment via 4% average plan reduction and NDIA taskforce to cut package growth.
• Every Australian Counts campaign highlighting numerous stories of plans “slashed” contrary to government denials of cuts.
• NDIS Review Final Report (2023) – Guide for people with disability – recommending trained staff, clearer processes, and navigators for participant support.