Annie in wonderland

I’ve had a lot of questions lately about why I don’t dive into “on-the-ground activism” in the disability community. While I respect the passion behind it, my approach centers on accountability, respect for support staff, and a focus on the bigger picture. Here’s why I’ve chosen a different path. Accountability vs. Excuses In my experience, accountability is often misinterpreted as negativity. My approach emphasizes responsibility, transparency, and a willingness to learn from mistakes. Yet, I’ve noticed that when I bring up the need for accountability in disability support structures, it often rubs some people the wrong way. Instead of acknowledging areas where we could improve, disagreements are often dismissed as ableist. But accountability isn’t criticism for the sake of it—it’s a crucial part of ensuring that services work as they should. Respecting Support Staff A big part of advocacy should be about building respect and understanding for support staff, who work hard within the l...

Introduction In my recent video, I explore a phrase we hear far too often in disability support: "in the best interest of the client." On the surface, it is a guiding principle for thoughtful, respectful care. But in reality, it’s often used to justify choices that leave clients out of the conversation entirely. In this blog post, I want to expand on the video’s key points, exploring how this phrase can shift from an empowering concept to a way to control or dismiss people’s choices—especially when cultural, medical, and disability-specific viewpoints clash. "Best Interests": A Weaponized Phrase In the video, I discuss how this phrase is frequently weaponized, turning what should be a supportive idea into a tool for restriction. When someone claims to be acting "in the best interest of the client," they may mean well, but it’s often used to make decisions without the client’s input. Instead of empowering choice, it limits autonomy, favoring assumptions ove...

 In support work, knowing your clients is key to providing effective and respectful care. This begins with reading their care plans before meeting them, asking thoughtful questions, observing their responses, and understanding their living situations. Your role is to work with their environment, not against it—a principle that some support staff, unfortunately, overlook. Take, for instance, clients who live in a family home. It's important to build a professional relationship with the family while recognizing that supporting the client means, to some extent, supporting the family as well. At the same time, situational awareness is critical—you must know your boundaries. Helping clients with tasks, like chores, is part of fostering their independence. However, it's equally important not to overstep and be seen as the housekeeper. In cases where the family or client has the necessary funding, suggesting they hire a cleaner might be a more appropriate solution. Situational awarene...

 This topic only scratches the surface of something that affects the disability community in a specific way. Infantilization can be seen as a form of discrimination, but some people may view it as uninformed caregiving. Either way, if you're a paid caregiver, it’s crucial to be aware of how infantilization can cause frustration, particularly when working with medium to low support needs clients. Frustration often leads to what the industry calls “difficult and challenging behaviors.” But these behaviors aren’t random—they have causes, and one significant cause is frustration. Everything I’ve read about managing challenging behaviors in the disability sector emphasizes that it’s not about the caregiver. The way a caregiver reacts can make a situation better or worse. This is where situational awareness becomes critical. Understanding the root causes of frustration helps identify triggers—real triggers, not the casual "I was triggered at work today" kind, but genuine clini...

So, I know that I have been neglecting the blog and using ChatGPT far too much, and I know people can see that. However, it is a tool—a very new tool—and we don’t yet know what the long-term implications are. Here's why I’ve been neglecting the blog, and there are a couple of reasons for it. The most important is that I’ve been spending quality time with the people in my life who are important to me. The second reason is that the podcast is taking off, which is amazing. It’s also wonderful to see the support from guests who are willing to give up their time. A special shoutout to Debbi Lund for being a regular guest! Another reason is that I can reach a wider audience on YouTube, which is also taking off, but it’s impacting my margins of time and priorities. However, I’m now at a place where I can refocus and get organized. For me, part of that means carving out time for the blog again. Additionally, the platform I use for blogging makes it hard to get monetized. To be honest, the ...

Understanding the Recent NDIS Changes: What They Mean for Clients The National Disability Insurance Scheme (NDIS) has undergone significant legislative changes, and it’s important to understand how these will impact clients moving forward. These changes were introduced through the NDIS Amendment (Participant Service Guarantee and Other Measures) Act 2022 and reflect updates designed to streamline services, enhance participant outcomes, and prepare for the future of disability support. In addition to these changes, discussions around the role of support coordinators evolving into navigators are a key feature in the National Disability Roadmap . In this post, we’ll break down the most significant changes to the NDIS, what the potential shift to navigators means, and how this fits into the overall disability support strategy. 1. Participant Service Guarantee The Participant Service Guarantee is a cornerstone of the recent NDIS changes, ensuring quicker and clearer processes for decisi...

What Does a Support Worker Look Like to You? When it comes to choosing a support worker, the most important thing is understanding what you need. The right support worker for one person may not be the right fit for another. But here’s the key takeaway: there’s no such thing as a bad support worker—just people who may not be suited to the industry or to your specific needs. Support work is a profession where personalities, communication styles, and expectations must align. If they don’t, it’s not necessarily because the worker is "bad." They might simply be better suited to a different client or a different role. Watch this insightful video on what it means to have the right kind of support and how to figure out what works for you. What Are Your Needs? Before hiring a support worker, reflect on what your specific needs are. This helps ensure you're finding the right person for the job. Ask yourself: What are the tasks I need help with? Whether it’s personal care, transpo...

The Dark Side of Disability Advocacy: Inclusivity, Hierarchies, and Respect for Different Journeys Disability advocacy is a crucial movement that seeks to uplift marginalized voices, promote inclusivity, and ensure that the needs of people with disabilities are met. However, as with any movement, there are areas of concern that, if left unaddressed, can create harm within the very community advocacy seeks to protect. Issues like hierarchy, exclusion, and manipulation are all too common and must be discussed if we are to build a truly inclusive space for all. The Hierarchy of Disability: Exclusion of Hidden Disabilities One of the most concerning aspects within disability advocacy is the development of an unspoken hierarchy—where individuals with visible or more severe disabilities often dominate the conversation, leaving those with hidden or higher-functioning disabilities feeling excluded. This hierarchy is not only harmful but also counterproductive to the goals of true inclusivity. ...

Why the NDIS Needs a Deficits-Based Funding System The National Disability Insurance Scheme (NDIS) was designed to support people with disabilities in accessing the services they need to live more independent lives. However, there’s a growing concern that the current funding structure, which leans heavily on skills-based assessments, isn’t providing the most effective support. What we truly need is a deficits-based funding system—where funding is tied to a person’s limitations, with support focused on building the necessary skills to improve quality of life. The Flaws of a Skills-Based Funding System At first glance, a skills-based system may seem logical—funding is allocated based on what people can already do. However, this approach overlooks the reality that many participants need support precisely because of what they cannot do without assistance. It assumes that everyone has a certain baseline of ability, and the funding builds from there, which is simply not the case for many pe...

In the world of disability support, the truth isn't always straightforward. For many individuals, particularly those with a history of trauma, lying can be a survival mechanism—a way to cope with a world that often fails to believe them. In this post, we'll dive into the complexities of lying as a trauma response, explore why it's crucial for organizations to take these lies seriously, and discuss how to foster a culture of trust and understanding. We’ll also reference a compelling [YouTube video](https://youtu.be/wnUmCJDZJ6E) that sheds light on the intersection of disability and truth-telling, providing further insight into why lies occur and how organizations can better respond. **Lies as a Trauma Response: A Deeper Understanding** Lying is often seen in a negative light, associated with deceit and manipulation. However, for many individuals with disabilities, lying can be a trauma response—a means of self-protection. This behavior is particularly common among those who ...

  Ok let’s talk and this is something that I need to get off my chest that some of you in the care industry shouldn’t be hear. I want to talk about something that happened this morning and the impact it had on me to the point I just collapsed crying outside, I finally have the courage to say what I need to say and that is that low support needs doesn’t mean no support needs. It means a lower level of support is needed. I know that I am an adult and able to cope with big girl tasks but when asking for help its your fucking job, is it that hard when I ask for help to do your fucking job, I waited 2hr and I just realised no one is coming to save me I am in a sil house ( basically a group home for people with disabilities for readers outside Aust and I   have realised no one besides my family is coming to help. Even when they are paid and its there fucking job, but there are some exceptions of staff in the house but generally I have realised I don’t ask for help because the ot...

  Picture this: you're stuck in a system that's supposed to support you, but all it does is fall short at every turn. Your needs aren't being met, your voice isn't being heard, and the frustration is building with each passing day. Enter manifesting – the latest trend in self-care – offering a tantalizing escape route from your troubles. But here's the catch: your troubles aren't just going to vanish into thin air. They're deeply rooted in systemic failures, conveniently overlooked by the glittery facade of manifesting. Let's shine a light on the elephant in the room: NDIS agencies. These are supposed to be the lifelines for people with disabilities, providing essential support and services to improve their quality of life. But what happens when these agencies fail to deliver? What happens when the funding dries up, leaving clients stranded in a sea of unmet needs? For many, manifesting someone out of their life isn't just about convenience – it'...

  Agness Baden Powell   Olive Baden Powell These two powerhouse ladies created Girl Guides and within that movement pushed for the inclusion of children with physical disabilities or who had been in hospitals long term particularly the great Ormond set hospital to have units in the hospital furthering their education and training in a way that wouldn’t have been possible, in any other way. This led to others creating hospital schools and remote schooling such as correspondence schooling, which has led to what we now know as the “ social” inclusion model of disability support and care.  Also, we need to acknowledge the support and guidance of the adult vollenters and leaders for women and girls in this worldwide organization that has led the way in inclusion for people with a disability through the model of "extension building"  Sister Kenney, who created a method of using hot towels and massaging the muscles as well as exercise for children who survived pol...

 <script async src="https://pagead2.googlesyndication.com/pagead/js/adsbygoogle.js?client=ca-pub-4981013962895893"      crossorigin="anonymous"></script>   Hey all, I am taking a break from blogging and YouTube at the request of some people close to me. However, I need to say that I will be doing a one-off blog post on the Disability Royal Commission. I feel that we need space to process the outcomes and what is in the report and I feel like other disability advocates are much better qualified to talk about it than me, I am feeling the need to amplify voices that have been in the lead in the Disability Royal Commission, we see that people are still processing it and the larger term changes that it is going to bring. These changes are something that we need to be very much are needed but they need to be balanced with the needs of the larger community and changing attitudes towards people with disabilities, and how we are treated by professionals and...

 This is going to be a short and sweet post and a post that I wanted to do and it is because people are starting to see support workers as not something to be ashamed of but they starting to be seen as a normal thing that people with a disability that have access to the NDIS might choose to use there are several forms of support and this is where things get complex. One is housing so this is mainly Sil housing ( supported independent living)  that has been established by a support provider and this depends on the person's needs and funding ratios, this is where ratios of support come in so this could be that you are either a 1:3 so that being one support worker to three clients, or a 1:2 or needing around the clock care being a 1:1 so this being one person to one support worker but in a housing situation its very rare.  I don’t like the term parents as we are the main character in our lives and not just a participant this is why I use client I know in some international...

  So, I must just get this out of my system, and I am seeing why I am not manifesting what I want in my life. The first one is I am not putting in the work, so the meditation to find the blockages in my life as are becoming very apparent to me, and some things I can’t control but others I can, and I am willing to tell you why. In my house (I live in what is called a SIL house, this is short for Supported Independent Living) it’s a type of housing for people with disability but is more for people with mental health needs or like myself psychosocial disabilities. So, people who would otherwise fall between the cracks in support, but we have one support worker that through the virtue of her relationship’s in the company. She is essentially allowed to get away with a lot more and simply feels the need to be the adult in the room and “direct traffic, this is annoying the other support workers as they have had to pick up the slack due to them not being able to speak up to management du...

This is a post that I really didn’t want to write about, but I am sad to say that it needs to be written about and understood. As there is a massive difference between a support worker that just needs more training and education and I bad support worker. The support worker that needs more training is doing their best to become a good support worker and to work with a client, they know that they need more skills and to be able to work with the client not against them. We also see that people don’t want to do the basics of support they come into the industry thinking that it’s all fun and games but it’s at times this but at times a lot of hard work both emotionally and physically. When I am talking about the basics I am talking about, making sure there living is clean and hygienic, that they have food in the fridge, that they are sticking to a basic budget, that they have community connections, weather that be a day centre or other meaningful activities, and that these activities are...