News & insights

The NDIS continues to evolve. In 2026, many participants and families are feeling the impact of legislative updates, tighter plan reassessments, funding scrutiny and an increased emphasis on evidence and measurable outcomes. For some, this has meant shorter plans. For others, requests for additional documentation or functional evidence. For many, it has meant uncertainty. If you are feeling unsure about what these changes mean for you or your family member, you are not alone. Understanding what is shifting, and why, can help you prepare and advocate with confidence. The reform context The National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Act 2024 introduced structural reforms designed to improve the long-term sustainability and consistency of the Scheme. Legislation: https://www.legislation.gov.au/Details/C2024A00055 Funding decisions continue to be guided by Section 34 of the NDIS Act . The broader reform direction was shaped by the Independent Review of the NDIS . What is actually changing for participants in 2026 Participants are experiencing: • Stronger application of “reasonable and necessary” criteria • Greater emphasis on functional evidence • Increased documentation requirements • More structured plan variations and reassessments • Closer alignment between goals and funded supports • Heightened compliance and cost scrutiny The NDIA Operational Guidelines clarify that supports must relate directly to functional impairment.able-and-necessary-supports The Disability Royal Commission Final Report . NDIS Quarterly Reports . The Australian Institute of Health and Welfare . Practical steps before your next plan review Request updated functional assessments early. Align goals clearly to daily functioning. Document changes, regression or increased needs. Outline risks if therapy reduces or ceases. Track measurable progress. Seek written clarification where needed. At helpz, we prioritise clear reporting, measurable outcomes and collaborative communication to support participants through change.

Pathological Demand Avoidance, sometimes reframed as Persistent Drive for Autonomy, is a profile that many people within the autism community recognise. Although PDA is not a formal diagnosis in current diagnostic manuals, many clinicians and autistic individuals describe it as a meaningful way of understanding patterns of demand avoidance that stem from anxiety, uncertainty, and a strong need for autonomy. PDA is often misunderstood, which can lead to unhelpful assumptions or the belief that individuals are being deliberately oppositional. A neuroaffirming perspective helps us understand PDA as a valid part of neurodiversity. It shifts the focus away from control and compliance and towards emotional safety, autonomy, and collaboration. What Is PDA PDA describes an anxiety driven need to avoid everyday demands, even when the person wants to participate. These demands may feel overwhelming or threatening because they involve expectation, uncertainty, or a loss of control. Common characteristics described in the PDA profile include: A strong need to avoid demands, sometimes using strategies like humour, negotiation, distraction, or retreat A style of communication that may appear socially confident at first but does not always match deeper social understanding Rapid changes in mood, often linked to pressure or anxiety A comfort with imaginative play or adopting roles, which can help manage stressful situations These behaviours are not acts of defiance. They are protective responses from a nervous system that experiences demands as a source of intense stress. Is PDA a Diagnosis PDA is not recognised as an independent diagnosis in the DSM or ICD. Many professionals view it as a profile within autism, while others see it as a pattern that can appear in a range of neurodivergent presentations. There is ongoing debate, and research is still developing. Despite this, PDA is increasingly recognised in multidisciplinary autism assessments, particularly in the United Kingdom. Families and practitioners often find the PDA framework useful because it offers a way to understand demand avoidance compassionately and practically. Why Understanding PDA Matters People with PDA are often described as oppositional or non compliant, when in reality their behaviour reflects: high anxiety sensitivity to expectations a need for predictability a strong drive for autonomy and control When misunderstood, young people and adults with PDA may experience unnecessary conflict, shame, or burnout. A more informed perspective encourages compassion and supportive strategies instead of pressure or discipline. Neuroaffirming Approaches to Supporting PDA Supporting individuals with PDA is most effective when the focus is on reducing pressure, building trust, and supporting autonomy. Reduce Demands Where Possible Small changes can make a big difference. Indirect language, gentle invitations, choices, humour, and collaborative problem solving reduce pressure and help the person stay regulated. Traditional reward systems or consequences often increase anxiety and are less effective. Increase Autonomy A sense of control helps reduce distress. Offering choices, negotiating tasks, and allowing flexibility helps build cooperation and reduces overwhelm. Support Emotional Safety PDA is closely linked to anxiety and uncertainty. Predictable routines, sensory supports, clear expectations, and a calm supportive presence can help reduce stress. Connection and co regulation often pave the way for engagement. Work With Strengths Creativity, quick thinking, focused interests, humour, and imaginative play are often strong tools for learning and communication. Using these strengths helps build confidence and makes participation feel safe. A Neurodiversity Affirming Perspective Some clinicians and advocates argue that the term PDA can be pathologising, because it suggests something is wrong with a person’s natural need for autonomy. Alternative terms like Persistent Drive for Autonomy reflect a more respectful understanding of how the individual experiences the world. This perspective views PDA as a difference rather than a problem and focuses on approaches that prioritise dignity, safety, and empowerment. Summary PDA is a meaningful way to understand how some autistic and neurodivergent individuals respond to demands. It is not about refusing for the sake of it. It is about managing anxiety, protecting autonomy, and navigating a world that often feels unpredictable or overwhelming. Awareness and compassionate understanding help families, educators, support workers, and clinicians create environments where individuals with PDA can feel heard, respected, and supported to thrive. References PDA Society. Identification and Assessment of a PDA Profile. Gerlach, J. (2024). Five Things to Know About Pathological Demand Avoidance. Psychology Today. Naseef, R., Shore, S. (2025). Reframing Pathological Demand Avoidance. Autism Spectrum News. Science Insights (2026). What Is a PDA Diagnosis. AuDHD Psychiatry UK (2026). What Is PDA Autism. PDA North America (2025). Understanding and Supporting PDA.

Each year on April 2, World Autism Day gives us an opportunity to pause and reflect, not just on what autism is , but on how we as a community can create spaces where autistic people feel genuinely understood and supported. The conversation is slowly shifting from “awareness” to “acceptance,” and that shift really matters. Awareness is knowing autism exists. Acceptance is changing how we respond, communicate, and include. So, what does meaningful acceptance actually look like in everyday life? Recognising Autism as a Different Way of Experiencing the World One of the most important steps is understanding that autism isn’t something to fix. It’s a neurotype, a different way of thinking, sensing, learning, and interacting. When we frame autism this way, we stop trying to make people “fit” and start looking at how environments, routines, and expectations can better support them. Often the challenge isn’t the person; it’s the noise, unpredictability, or pace of the world around them. Listening to Autistic Voices A lot of the most valuable insight comes from autistic adults and children who openly share their experiences. Many talk about the importance of autonomy, clear communication, and having their sensory and emotional needs respected. Acceptance means asking questions like: “What helps you feel comfortable?” “How would you prefer to communicate?” “Would you like choices or support with this task?” It’s simple, but it shows respect and it gives people control over their own lives. Making Environments More Supportive Small adjustments can make a huge difference: dimmer lighting or quieter spaces clear routines or visual guides time to process information predictable transitions reducing sensory overload where possible These aren’t dramatic changes, they’re thoughtful ones. And they help create a sense of safety and calm. Respecting Different Communication Styles Not everyone communicates in the same way. Some people use spoken language, some use AAC, some use gestures or writing, and some take a little extra time to respond. All of these are valid. Supporting communication might mean waiting a few extra seconds, offering visual choices, or checking in without pressure. It’s about meeting someone where they are, not rushing them to where we think they should be. Celebrating Strengths and Interests  Many autistic people have deep interests, incredible focus, creativity, strong memory skills, or a unique perspective that adds so much richness to their families, schools, and communities. Acceptance means valuing these strengths—not dismissing them as “fixations” or redirecting them unnecessarily. Passion is a powerful tool for learning, emotional regulation, and confidence. Prioritising Autonomy Ultimately, acceptance is about supporting people to make their own choices wherever possible - around routines, communication, sensory needs, and participation in community life. When we give autistic individuals the space to be themselves, we support genuine independence and wellbeing. A Day That Reminds Us of the Bigger Picture World Autism Day isn’t about wearing a colour or posting a hashtag. It’s a reminder that inclusion happens in the day‑to‑day decisions: the conversations we have, the flexibility we offer, the assumptions we let go of, and the voices we uplift. Acceptance is ongoing work, but it’s deeply worthwhile. When we create environments where autistic people feel understood, respected, and supported, everyone benefits. It’s how we build communities where all neurotypes can thrive.

What you do is significant

 By Tharon Neurodivergent Consultant at helpz

Over recent months, Rory has been working toward a meaningful and exciting personal goal: safely participating in community activities, most importantly, going bike riding with his dad. For Rory and his family, this goal represents far more than just a weekend activity. With his autism diagnosis and a history of physical and verbal aggression, developing the skills needed for safe, enjoyable community outings has been an important and empowering focus. Throughout this journey, Behaviour Support Practitioner Naomi Silva has been supporting Rory, his family and team of staff. Naomi has worked closely with them to create structured, tailored strategies that build Rory’s confidence and set him up for success. This has included personalised social stories that help Rory understand expectations and reduce uncertainty before outings. Naomi has also collaborated closely with his Occupational Therapist to ensure consistency and a coordinated approach across all settings. And now for the milestone that has the whole team celebrating: In February, Rory successfully rode his bike with his support worker! During the ride, Rory participated safely, followed instructions, and willingly completed the activity, a huge achievement that reflects his commitment, and the effectiveness of the collaborative supports around him. This moment is much more than a bike ride. It’s a powerful step toward independence, connection, and joy for Rory. We are incredibly proud of Rory’s progress and look forward to supporting him as he continues to grow, explore, and participate confidently in his community.

School holidays can bring welcome downtime—but they can also disrupt the structure many children rely on to feel calm, safe, and regulated. Maintaining a sense of routine during this period can make a huge difference in supporting behaviour, reducing anxiety, and creating smoother days for everyone. Here are five practical, easy-to-implement tips to keep things predictable while still enjoying the holiday break: 1. Keep a Consistent Wake-Up and Bedtime Even if the days feel more relaxed, sticking to a predictable sleep schedule helps maintain energy levels, mood regulation, and overall wellbeing. ✅ Aim for similar wake and sleep times ✅ Use visual morning and evening routines to provide structure 2. Create a Simple Daily Rhythm A rigid schedule isn’t necessary—but a basic, predictable flow can help children know what to expect. For example: Breakfast → Activity time → Outdoor play → Lunch → Quiet time → Afternoon outing Using a visual timetable can help reduce uncertainty and support independence. 3. Plan 1–2 Structured Activities Each Day A balance of structured and unstructured time helps keep days manageable. Ideas include: Arts and crafts Playground visits Cooking together Board games Short community outings This gives children purposeful engagement while preserving flexibility. 4. Prepare for Changes in Routine Holidays sometimes bring surprises. Preparing in advance can prevent overwhelm. Try: ✅ Social stories for upcoming outings ✅ Countdown timers for transitions ✅ Talking through “what’s happening today” each morning 5. Prioritise Regulation Breaks School holidays can mean more noise, excitement, and stimulation. Build in: Sensory breaks Quiet time areas Movement activities (jumping, swinging, stretching) Deep pressure or calming strategies  This helps keep arousal levels steady throughout the day. A gentle routine helps children feel grounded while still enjoying the freedom and fun of school holidays.

Most of us swallow hundreds of times a day without thinking about it. It’s automatic, something your body just does. But for people living with dysphagia, or swallowing difficulties, this simple act can feel anything but simple. Eating and drinking can become tiring, stressful, or even risky. The Royal College of Speech and Language Therapists (RCSLT) describes eating, drinking, and swallowing as essential to daily life, but for many people, these are activities filled with effort, discomfort, or danger. They also note that swallowing difficulties can deeply affect quality of life and lead to health complications if not managed well. Why Swallowing Is a Big Deal Food isn’t just nutrition. It’s social. It’s comfort. It’s connection. So when swallowing becomes difficult, people may start avoiding meals with others, choosing only “safe” foods, or taking much longer to finish meals. Some people lose weight without trying. Some develop chest infections from food or drink entering their airway. And it’s not because they’re “fussy” or “slow” - it’s because swallowing is an incredibly complex action that relies on more than 30 muscles working in perfect sync. When a neurological condition, developmental disability, or health change disrupts that system, swallowing safely becomes much harder. RCSLT highlights the key role of speech‑language therapists in helping people manage these challenges and maintain independence, safety, and dignity. So What Does Dysphagia Look Like? It varies from person to person, but some common signs include: Coughing or choking when eating or drinking A gurgly or “wet” voice after swallowing Taking a long time to finish meals Feeling like something is “stuck” Frequent chest infections Avoiding certain textures Sudden weight loss Some people show very obvious signs—others hide it well out of embarrassment or anxiety. Who Experiences Dysphagia? Dysphagia isn’t a standalone disability, it appears across a wide range of health conditions and developmental profiles. Many people experience swallowing difficulties because the muscles, nerves, or structures involved in eating and drinking are affected by an underlying condition. For example, people with cerebral palsy may experience dysphagia due to challenges with motor coordination that affect the oral and pharyngeal stages of swallowing. Individuals with developmental disabilities can also experience feeding and swallowing difficulties, as these conditions often impact muscle tone, coordination, or sensory processing needed for safe swallowing. People with Down syndrome may be more prone to swallowing difficulties because of hypotonia (low muscle tone), anatomical differences, and variations in oral‑motor development, which can influence eating and drinking safety. Swallowing difficulties can occur in many other contexts as well—such as ageing, neurological conditions, acquired injuries, or structural changes to the mouth or throat. According to the Royal College of Speech and Language Therapists (RCSLT), eating, drinking and swallowing difficulties significantly affect quality of life and can lead to serious health complications if not identified and supported. Why Talking About Dysphagia Matters Swallowing difficulties are often misunderstood. Many people assume it’s “just part of ageing” or something to quietly work around. But awareness makes a real difference: ✨ It reduces stigma. People are far more likely to speak up about swallowing problems if they feel safe and understood. ✨ It improves safety. Spotting the early signs can prevent choking, malnutrition, dehydration, and pneumonia. ✨ It supports dignity. Everyone deserves to enjoy food and drink in a way that feels comfortable and respectful. ✨ It values the work of support teams. From speech‑language therapists to disability support workers, good mealtime support is life‑changing. How We Can Help Supporting someone with dysphagia doesn’t always require specialist knowledge—small things make a big impact: Slow the pace of meals Follow the recommendations provided by clinicians Support upright, comfortable posture Create calm, distraction‑free mealtime environments Notice changes and speak up early Encourage regular reviews with health professionals Sometimes, the best support is simply giving someone the time and space to enjoy eating without pressure. The Heart of It All: Connection Food brings people together - families, friends, communities. When swallowing becomes difficult, people can feel left out of those shared moments. That’s why awareness isn’t just about safety. It’s about restoring confidence, enjoyment, and a sense of belonging. Dysphagia may not always be visible, but the people living with it deserve to be seen, heard, and supported.