Annie in wonderland

Disclaimer – That these are my own lived experiences and understanding from the research that  I do around the NDIS and health-related topics please be aware that it is informational only and not to be used as a substitute for professional advice or working with a Planner, Disability Advocacy service or talking to your Medical and Allied Health team.   This is going to be a difficult post to write, and I know it will generate a lot of discussion about manipulation, but we need to be honest it happens to everyone and you know that you are being manipulated.   However the question we need to ask here is what happens if you have a disability and it’s the only way to get what you want and have care workers that don’t realise you are able to do it. So the first thing we need to get out of the way is that some people with a disability have been raised in healthier environments than others and this means that they know healthy ways to get there needs to be met, in others it’s a massive issu

This is a really basic question that we see needs to be answered, and we see that it is something that we need to be aware of the people outside the NDIS don’t really understand the jargon that is within the NDIS and I am hoping that this year I can break it down a lot more but, a Support Coordinator is someone who helps you navigate the NDIS so it could be a person who attached to an agency or independent. I find that going independent works for me much better than someone being with an agency and this is due to the fact that I have had bad support coordinators they were doing dual roles, so I found that this isn’t a great idea but for others, it might work really well. So a support coordinator is someone who helps you navigate appointments, sets up service agreements and helps you to be able to work towards your goals and if you need a change of circumstances or are coming up to a plan review we see that this is where the really get to shine in that they specialize in building go

  So this is something that we need to discuss it is a term we often hear thrown around and it means very different things to different people, but in terms of the NDIS, it has a very specific meaning.   This is the term complex needs as a person with a disability can have either just their disabilities or chronic illnesses or have just one or the other as well.   Complex needs in terms of the NDIS: “ NDIS Participants are identified for the Complex Support Needs Pathway by the complexity of their situation and personal factors such as being homeless or returning to the community from living in residential aged care. Involuntary or voluntary involvement with particular government systems such as Justice or mental health would also be factors which would necessitate entry to the complex support needs pathway.” This is something, we need to be very aware of in that   support workers are undertrained in being able to work, with people with complex needs and we see that people need t

This is a really important topic to talk about and we need to be aware of it as internet safety is something that we don’t talk about in the context of disability because people with disabilities often use the internet to connect with others and to be able to work remotely.    However, we are seeing that if you are isolated you are more likely to be scammed as a scammer would make you feel good and accepted, but their  end goal is to be able to make a connection and to make you feel safe but they are going to scam you. It is something that I feel we need to talk about it as it is something that people need to be aware of to talk openly about it because people are often ashamed to come forward and talk about it due to the complexity of the internet and the fact that our older generations don’t understand internet langue or etiquette that varies between sights as well and we see that this is something that we need to be aware of that various sights will target a different demograph

Disability and emotions and I see that this is going to be a challenging conversation that we need to have to be able to get to the bottom of things as the system as we know it has become to complicated with power going to the providers and not the clients commonly called the participants and this is a major issue that needs to be addressed due to the fact that many clients including myself have been emotionally harmed by rules and regulations that are put into place because of an incident that relates to something else and we see that this is a massive issue and we see that this ties into the systemic undertraining of support workers, we see that this can really harm some people due to the way that the rules aren’t really person-centered that they based around the medical model of disability and we see that this isn’t ok really and we see that people need to be aware of this as I have recently left a care organization due to, several factors.     Lack of consistent care team and a lac

This is something that we need to talk about, and I see that we need to be aware of it, that support workers are human and need good backup support from their agency. I saw a couple of incidents that we need to be reminded of that there are some great agencies out there and that we need to remember that the support workers do have, lives outside of work, many clients, and having to be able to work with a large group of people can be massive. We also see that this is something that Large multi-office organizations seem to forget they are focused on the numbers, and we don’t want to see that we want to see person-centered care from a lot of people, and we see that this is something that people need and want and what is person-centered care? It is something that we need to be aware of it is where the person is put at the front of their care and people need to be aware that it’s driven by the person with a disability, not the care organizations and we see that this could be a massive iss

This was unbelievable to me that I had to have these conversations around what is a disability and a chronic illness, what made this situation so unbelievable was the fact that the person involved was a younger support worker and it shows me that we need to have a serious push for education around disability and what disability support is and that it does involve a large amount of care.   I am finding it harder and harder to deal with the lack of general education of the support workers and their unwillingness to see that because I am high functioning doesn’t mean that I am not disabled, and we see that people need to be aware of this and we see that many disability advocates are working both online and offline that are willing to come and work with people to learn about “hidden disabilities” so these being disabilities that aren’t obvious to people at first glance and we see that people are becoming more aware of this and this is great but there isn’t a great deal of informal suppor

Gaslighting is a term used to describe when a person tries to manipulate the situation or your interpretation of a situation to make you believe that your recollection of events is not correct and that they can then use it to manipulate you into doing things.  This so we need to be aware that it’s not your recollection of events that has changed it is that a person or a provider is trying to manipulate you into believing that you are not capable of remembering events correctly and this can happen intentionally or unintentionally when it is intentional some things can be done about it and you need to be aware that providers have a duty of care to prevent things from happening to you so what you might see as gas lighting might ae duty of care issues. I am talking about when a person is systemically doing things to make you doubt yourself and your abilities. Gaslighting - Wikipedia  This from a provider could be changing a shift time and not telling you and making you believe that

So this video  and this blog post came on the back of what I outlined in my post about what a support worker can and can’t do for you and we see that it’s view count is still rising, and I think that we now need to step back and have a little chat about the reality of living with a disability and  doing some myth busting around it but I need people to be aware of a couple of things before we dive in these being that these are only my lived experiences and not universal experiences but we see that people do have to deal with this all the time and it might not be as a result of your disability but as a result of poor support and care and this we see can lead to a massive amount of harm and we see that this level of harm can lead to very poor physical and mental health outcomes and this is the first thing that I would like people to know that living with a disability isn’t “cute” or funny it is downright hard work and that is the second thing I would like people to know that I would love

 I need people to be aware that this blog post is from my lived experience as a person with a disability.  It is something that we do need to talk about is that I have talked at length about it in other blog posts so it needs to be talked about this is what a support worker can and can’t do for someone and this is a difficult topic to be objective about for me because I have had very poor care and at the same time fantastic care.  I can’t seem to reconcile the two together as it has kept me off balance for a long time, but a support worker is there to help you to be more independent and not less independent and we see that this can be a massive issue if a person doesn’t know what good support work looks like.  Or is unable to define what their limits are for a support worker working with challenging clients.  This could potentially be quite dangerous due to a person not being able to speak up due to experiences with support workers in the past and this is where the support worker n