This is going to be an interesting post to see the responses we get; some of them will be very conflicting I see already, as this is going to be around disability and consent. This is going to link into the conversations we are already having as a society around consent, and we see that with disability it gets even more complex due to the complexity of care, so we are going to potentially split it into several categories.
We have consent in relationships, so these relationships need to be further split down. Family, friends, caregivers, support workers and Allied health teams.
Fiscal support teams as we see that some people with disabilities are able to give full and informed consent to be supported on their own terms and some can’t due to their disabilities so need an appointed decision maker we are seeing that there are some very negative things coming out about the office of the public guardian that deserves its very own posting due to the fact that there has been what I can only consider and call callous decisions around them taking hold of people’s assets and liquidating them to pay for care, but not involving family at all. [i]
I will post on whether we have any other options in Australia, other options as I am looking into having a trustee myself, but it would be a family member and I do have a plan trustee as well.
So I am seeing that we need to have family and friends that won’t talk people for a ride so having what they call a “ vulnerable adult” in legal terms being able to be looked after and not just on a day-to-day level but a level of what the NDIS calls capacity building so this being a person being able to look after themselves on a day to day level but also building in long term goals such as sticking to a budget. Being able to in my own case work towards having my hobby become a business and getting well after covid as well so getting out into the sun and walking to be able to go back to exercise physiology as well.
But consent is more than the ability to say yes and know what they are getting into it is something that we see has vastly different meanings for some people, in supported accommodation, it’s being able to have some level of control over who comes into the house to support you. It is being able to feel safe in your own home. It’s also consenting in relationships and I will do a post later down the line about disability and relationships due to I am finding that “higher functioning” people are actively discouraged from having intimate relationships and I know that is out of concern for the clients involved and they could become at risk of fiscal and other forms of abuse such as image-based abuse, or physical abuse if they can’t consent to it.
behaviors
As Consent in disability isn’t taught or spoken about we talk about manners and “appropriate” behaviours and use social stories but we don’t talk about consent on a deeper level and what it means as it means very different things from a young person talking to a potential romantic interest, to an older person going forcefully into care or a person with a disability having to ask permission to go out to get a job. ( I am very aware that I am talking about extremes here as well other things like this do come down to the ability to make good decisions and to care for themselves) like I know long term due to some of my medical conditions I need to be aware that my care needs are going to be much more involved and that I am going to have to surrender some of my pride as well as dignity in the basics of being able to complete basic hygiene tasks as well.
However, in going back to consent we know that in disability settings is knowing that you were able to ask for support and have it given without being judged, put down, or abused and we are seeing that this abuse does happen on several levels such as. Verbal abuse and slight gaslighting by providers and I have learned the hard way to have everything in writing and to not give the whole plan to a provider just the goals, as some providers will really take you for a ride and you only need to jump on social media sights like Reddit and discord to discover some heartbreaking stories of outright fraud.
One thing I see as I went down this rabbit hole was that as soon as you put the word ‘industry” with disability care you are going to see some unethical providers that come into the sector with less than noble intentions we see that this is going to become a massive issue because there is a great need for support workers and other professionals in the industry but they haven’t come from care backgrounds.
We are also seeing that they don’t have a great deal of training mainly a Certificate 3 in individual support and we see that this is the minimum level of training or even on-the-job training and this leads to poor outcomes for the people who need a high level of support so these are the people who may not be able to consent to what is happening to them so they need things explained at each step.
Due to the lack of training and support given to new support workers, I won’t say young support workers but new support workers because I have had some fantastic younger support workers that have had disabled siblings and they were motivated to come into the industry for that reason. I have also had bad support workers that should have known better because they had cared for parents, they thought they knew everything about support. However, it is here that I need to remind people that if you have supported one person with a disability you have supported one person with a disability people forget that disability is a spectrum and two people could have the same disability but one due to family support might have a very different outlook on live due to having family support to be able to maintain a good life style.
I am talking about people who have distinct complex needs and generally haven’t been taught about consent, so people with an intellectual disability or conditions that predispose them to potentially dangerous situations so conditions like ASD, Adhd, or a brain injury that they might not have the level of awareness that something is happening to them or that the way that they behave isn’t ok in what they are doing. Or their disability has excused them from any sort of consequences until they move out of home, and someone calls the police on them due to them doing some sort of criminal type of behaviour so things like cyber stalking someone, constantly calling someone on a mobile. Or acting out in public, I know that there are special considerations for people with disabilities or mental health conditions but this goes back to the complexity of not letting a disability become an excuse and being accountable to the best of your awareness.
As well as being able and willing to work with your care team as well so working with them in not making and asking for the level of help you need to it might be transferring some of your care needs to someone else so that could be a trusted family member or friend it might be a trusted support worker and this needs to have the right level of checks and balances as well. So we see that it’s a little more complex than we think about disability and consent so we see that there is many shades of grey when it comes to awareness about consent and if someone has the ability to consent and we all have a role to play in changing the conversation about consent as I do find that a lot of the time people don’t really have the awareness to reach out to the disability community and the disability community has very different experiences of consent as well.
For me, I have an awareness that I need to get permission to hug someone or to touch them or if I ask a support worker to help me to do things like choose clothing or in extreme cases where I have been in so much pain we see that they have been able to tie my shoes or to help me into bed this is where I am grateful for their support and understanding.
However, we do see that people need to be able to revoke this consent, and support workers need to be able to do personal care as well in a manner that is not going to make the person feel violated or ashamed that they can’t do what they need to do for themselves.
This is where family support comes into play but there needs to be a very fine balance between control and coercion, I have talked about the creamed corn before but for those who don’t know the basic of the stories was a support worker was helping the client to do a grocery shop and the client liked creamed corn toasties ( and seriously don’t knock it till you have tried it) and the mother liked one brand but the client liked another and the client lived away from home but the mother was upset that the client was getting another brand.
This is where choice and control come into play in disability and you might be wondering what this has to do with consent it actually has a lot to do with it as how involved is the mother in care as it was the daughters decision of what brand of creamed corn the client wanted, we are also seeing that some providers promise the world and when called out on it the client is the trouble maker so they didn’t know there routine or didn’t know that they liked to entertain or where so involved in the community.
So they feel it’s too hard to change rosters to support that client in what they are doing and I have found this mainly in supported accommodation when I was living alone I found that drop in support didn’t suit but that was due to us as a family being new to the system and not knowing what we could ask for and get help with.
I have also found that most people do have to keep on the tale of larger providers to get the help they need as well and I found that because I mask and I talked about masking in my previous videos we need to be aware that I can come across a lot more capable than I am and this can cause massive issues at times due to the fact that I have always had a massive level of support in my life from family and friends and we see that people need to be aware of this at times and we need to be aware that not every person with a disability has had the same level of support from families or been so invested in them.
I do remember my sisters convincing me I had magic powers when I walked through automatic doors and I got words mixed up and that angle parking was a fact for angelic beings who helped people through hard times and I do see that this was done in good fun and there was money put away for outside school activities and my family live despite my family struggling fiscally we see that we had a good life and some people with disabilities don’t have this background of knowing what is a healthy relationship.
They might not even be aware of what is happening to them, is wrong until they speak up about it.
However due to the way that some facilities are set, up I have seen and read about cases where this simply doesn’t happen, and the facilities as there as some houses that I know in Toowoomba that still run on an institutional approach and don’t get me wrong it needs to happen but it means that there is less person-centred care they are told when they need to get up are expected to be out of the house at certain times and they vote on what they are eating. I can understand the voting on what they are eating but being out of the house during certain times of the day is complex due to the fact that we see that what if the person was sick or didn’t have the funding to go out that day or simply didn’t want to so this is where the trickiness of person-centred care comes into play as it’s not as simple as what the person wants the person gets.
The NDIS has certain legal frameworks that it needs to stay within and we need to be able to work with it much more these concepts are, in a nutshell; duty of care, so this is to keep the clients away from harm and to make sure if they are in disability accommodation to make sure there basic needs are met and to provide active support if they are in supported independent accommodation so that is to make sure that they have food in the house, and not too much or too little, to make sure that there washing and ironing is being done as well as general housework, so the washing up floors and beds are changed regularly as well as if the client has only the one provider that they are accessing the community as well.
For some people with disabilities, this might be attending a community or day centre in my case it can vary from day to day, depending on what I am doing and how well I am doing that day as I am finding post covid that I don’t have the level of energy I used to and I will be honest dear reader, not having any say over who comes into the house to support me does put me on edge at times and I have at times felt like I didn’t have a voice but I am starting to get better at advocating for my needs and it also might be my weekend adventures of helping out with felling a tree at a friend’s house and then going four wheel driving with my family as well.
So we see that this is something that a lot of people with disabilities don’t have as they have had to historically move to where there was the support of family applied for state government funding or relied on charity for support so charities such as Endeavor or Multicap that did a wonderful job but as we are now seeing the model of care was stuck in the 60s thinking of that the providers know best but this isn’t always the case.
We also see that disability can change the dynamics of a family as well it could bring them closer together or tear them apart and this is where we see that people have different models of consent modelled to them for one family it might be seen as normal or even needed to have doors open when showering and changing but for others we see that this is something that is considered rude or even in extreme cases abuse but it does depend on how it is done and we see that this is why it’s considered best practice for support workers to be of the same gender when doing personal care tasks. However, we do see a lack of male support workers as historically support work has been seen as a female task in Toowoomba we have had places where people with disabilities could live a happy life and they had both good and bad experiences so these were places such as Horton’s village run by the salvation army. Bailey Henderson was started out as a place for people with disabilities and what we called “shell shock” to recover from the second world war and then we had Hameworth children’s home, each had their place but we see that the power was in the providers hands and this has started to change but we see that there still is an underlying elements of what we would consider power plays by providers as they get bigger, I have found that I am most happy to be supported by smaller agencies for community access and bigger ones for housing, as they knew what they were doing a lot more and I am finding like any organizations that are dealing with humans their has been some assumptions made about me and this is what has lead me to make these posts to prevent further harm as I have run up my internet bill actively avoiding a support worker that I clash with and I can’t speak up about it as I know from past experience I will get labelled a trouble maker and I can’t afford it emotionally and physically as well.
However I will work on the next blog post of pulling apart the reasons I feel like I don't have much power and how I am going to be able to get my power back.
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