Disability and respect.

 

Hey guys so I will be going dark for a while as I move and I wanted to talk about respect in disability and this is something that with several agencies I have found that Respect is a massive thing for support workers and respect is demanded from clients but not demanded from the office staff as they seem to be so disconnected that people don’t understand what is happening until they are under the impression that they are in trouble and when someone gets to the bottom of it we see that people aren’t told what is happening so how can they plan and have a stable life, I can understand that changes in staff happen and that there is communication break thoughts but we see that people need to be much more aware of the way that big agencies treat people with disabilities, the seem to be a commodity that people don’t want to admit it but I have seen and herd people calling us cash cows and difficult and challenging behind our backs and this isn’t ok as people need to be aware of what is happening and how it’s happening and to have timelines to be able to work through what is happening to them. I am at a loss to describe the situation that is happening to me and it is breathtaking to hear that there has been rumours and a lack of communication around what is happening to me, and I got less than 48 hrs that I was moving and I herd from my support coordinator who was concerned that I wasn’t told and we see that people need to be very aware in the talking about the NDIS cut backs that we are talking about but we need to remember that people are at the heart of it and I am probably wrongly  feeling like I haven’t ben looked after due to the fact that people haven’t told me what is happening and  it doesn’t help that I have a dynamic disability and that people don’t see my bad days they see a “ high functioning person with a disability” not the internal struggles with self-worth, with badly wanting a job but the cycle of realizing that I can’t cope with the demands of a job and having to try and to retrain while I have no idea what is going on in my life around housing.

I have to admit that there has been several situations that are of my own making but I won’t ask for help due to bad experience in the past around, Support workers and this is why I am a massive advocate for having a higher level of training in the industry as well, and I know that previous me did thrive on casinos but me now needs calm and ordered support as I my life with content creation is flexible but that is my decision around it, so it’s a very difficult one to be aware of your limitations but then unwilling to be assertive due to the fact that I have been both on and off line labled as.

·       A troublemaker

·       Not needing support

·       As a winger when I am simply trying to be assertive and we need to be much more able to listen to the voices of lived experiences, due to the fact that I was treated as an after thought and this is happening more and more, in support agencies that claim to be person cantered and to put the client at the start of what is happening.

I have only had one agency that has actually walked the walk around this being Semloh and they have regular check ins to see that people need to be able to understand what is happening in a persons life and to see if your team needs adjusting as well, so I need to talk about respect in disability support and I know that it works both ways but it’s not something that is easy to define in support as people need to be aware that we are people and that we often go though hell in a hand basket to be able to  speak up without being labled and in my housing situation we are seeing that people need to be able to speak up as even the support workers are covering up what needs to happen as there is a clique forming around one communication officer that is related to management and if your not in that clique you aren’t in the inner sanctum of what needs to happen and I am seeing that people let it get to crisis point before they apply for NDIS and they don’t realise that there is a dark side to it so I am a massive advocate, for transparency in support in both sides, of support but we do see that people in the office of agencies don’t actually realise the impact that they can have in changing rosters or support workers without talking to the clients and getting there perspective and then understanding what is happening due to the fact that they might have bonded with that worker, there was an older theory of support that to change out workers every 6 to 8 weeks due to the fact that a client can get into what is called learnt dependence and this is where people, learn to depend on the Support worker and it can in extreme cases lead to what is called learnt dependence so a person learns to depend on that person and gets lost or even it leads to deskilling  so the person loses basic skills, but this is wrong when they learn to trust a support  worker we do have something that most mature adults do have and this is called interdependence, so where you sit down and communicate what your needs are and work as a team to achieve them, so this is a massive thing to be able to work with a person to get them to trust you.  To form a working relationship with them and to be able to push them further due to the fact that they trust you and is willing to work with you, as they are working towards being a person who you can trust.

Being a support worker isn’t easy I have actually  worked as one and its not easy to get the person to trust you as far to many see it as an easy job to get through University and then work as an Registered Nurse, support work is very different to nursing and needs very specialised skills, that some nurses do have but most don’t have and we see that people need to have this understanding of disability and I do admit that I am talking from a place of privilege and security, but it’s not a place that is easy to talk from as you don’t have a lot of stability and how can you when at 24hrs notice you get told you are moving and to start packing.

It’s a difficult thing to hear but some support agencies need to have ex support workers running there office’s and doing the rosters due to the fact that people  who don’t speak up are basically  told that they aren’t allowed to have what we all have in difficult and challenging emotions, so we see that everyone has bad days and there is a direct intersection between disability and mental health, as we see that the world isn’t built for us and this is very challenging for some people to hear and accept it due to the fact that people need to be constantly reminded that disabled people exist and that they need to be able to  be involved in society and to be able to understand what is happening to them and this might be facilitated in several ways such as, using a support worker, using a mobility aid, like myself having supported living situations, but in a supported living situations we need to be able to have equal attention so that means having a routine and that might mean for someone who is used to being first all the time, being able to manage behaviours of concern such as jealousy and acting out so this being a person might hide things in peoples hand bags, they might lie  to throw people under the bus they might over sleep, they might neglect there hygiene, they might not understand the concept of keeping poop out of the shower and having to clean the shower regularly, we see that people need to be very understanding of what is called behaviours of concern and these can be easily managed it is just the persistence that we need to work on, in having the right frame works for the person so basically them having good boundaries and being able to understand boundaries for them and working with what is happening, however they can’t do that if they don’t know what is happening so this is where having trained communication officers, does really help in being able to communicate what is happen as in my housing organization I have seen what can only be described as utter shit storm,  as I wasn’t told what is happening due to the fact that I don’t attend the day centre, and they seem to let me float, this is great short term but I have discovered not great in the longer term, so let’s see what is happening and work with it and I finally have put my foot down and suggested that they get a full time communications officer instead of relying on support workers that may or may not remember to tell a person what is happening to them or where they are being moved to, its not a great look to have a client speak about an  agency like this but it’s the truth as we need to be very aware that sometimes the truth hurts.