This is what I was going to write about last week and I have been stuck in a wind of emotions and it’s around disability and care as we are seeing a lot of angst about the NDIS but the key thing is we need to remember it’s about the sustainability of the program so we do need to see cuts where it’s possible and I am not talking about cuts to services I am talking cuts to price gouging and poor customer service as it’s not just support but I had to wait for 3 weeks to have a shower chair replaced and I had to hound the service provider as when I went into the showroom they seemed to be more interested in finishing their coffee that serving me and they kept sending my plan managers quotes and not invoices. So, I thought from working in a retail pharmacy that.
1. Customer service is important.
2. being able to understand the difference between a quote and an invoice is basic in customer service and retail as well.
This seems to be a massive issue as soon as people hear the word NDIS package we see that people think money grab and this is where the cost issue has come in so we need to go back to reasonable and necessary this is the core foundation of the NDIS so is it reasonable that the person has it, and is it necessary for them to live a normal life so, it would be reasonable for a person who needs a new wheelchair to have it replaced or even upgraded to an electric wheelchair and to have it serviced at regular intervals, and the NDIS pays for it as well. It is reasonable for me to have support workers to help me clean, get me out of the house as well as help me to expand the blog and YouTube, and to help me spend time with my family and friends, and not isolate myself.
It is not reasonable or necessary for me to get funding to see a tarot card reader, but it is reasonable for me to go for a country drive with a support worker because I needed to have a change of scenery. It also makes sense for a support organization to help me with YouTube and the blog and to offer a recording space for growth. But having the NDIS fund a camera and other equipment does not make sense. They might as it makes a case for economic independence away from Centrelink. This is where I see that the NDIS and Centrelink do not communicate but are different government departments, and you need to have an incredibly good business case behind you as well as it could be a burden to them if you do not get monetized and sponsored.
I also have very strong views around not letting your disability become your excuse, so to explain this a bit more so if a person who is in a wheelchair could do their washing, but can’t reach to hang it out, it makes sense that they aren’t using it as an excuse as they are doing the washing and asking for support to hang it out.
But for someone like myself who is high functioning but limited in energy and wants to go out a lot of times well, it is questionable if I am using a support worker effectively to clean as they aren’t your housekeeper then the conversation needs to be around what needs to be done before I go out and how do I manage my fatigue and health to get the best outcomes.
However, it is reasonable for me to use a support worker to help me edit the YouTube and the blog and to be able to help me to research the topics that I talk about and being able to understand this as well. So I don't get myself in legal trouble or trouble with my support agencies. I am also working on building a relationship with my housemate and other friends as I have had a lot of angst around that I am not where I thought I would be in my life when I graduated high school, but every person with a disability or even has gone through trauma like a divorce or having a surprise baby does go through this as well. So, it is defining what is happening in my life and trying to make sense of it.
I thought I would be married and own my unit, but I had a lot of health issues get in the way and I am finally accepting that not everyone finds their happy ever after in getting married as well and that there are other ways to have a happy and fulfilling life.
As well, however, we see that this is a whole other blog post due to the way that I have had some insightful comments about my post on disability and consent and this is something that I know I need to go into the deep end on it as it’s something that we are all having a conversation on and again we are seeing that people with disabilities are being left out of the conversation and are now on the back foot.
The royal commission we see did expose a lot of ugly truths about what is happening behind closed doors and we see that there are changes but it is still hard to come forward and talk about what has happened to you and I have my own stories of verbal abuse and I will lay it out so people know why I am so passionate about consent in disability and having the right to consent.
As well as being able to have relationships that are on an equal level and being able to have intimacy if you can consent to it this is the big thing is that sometimes people with a disability despite being able to understand it aren’t encouraged or supported to have romantic or intimate relationships or with whatever gender they prefer as well.
I also see some danger when a client discloses that they are lonely and that they are wanting to make friends so we see that the worst thing they could say is well I am your friend you don’t need to worry, support work is a job it’s a job supporting people with a disability and that word disability is becoming wider in scope each year and I do worry about that but this is where a lot of people don’t need to struggle anymore they can get the help they need.
However, they as support workers are ignoring the fact that their client has disclosed that they are lonely and want to try to make friends it’s your job to help them to make friends as well so having that understanding of boundaries does make sense to me as well.
However, after my long tangent, we see that it does make sense to me that the NDIS is all about economic participation but a lot of people on NDIS are on the Disability support pension, and they will lose the pension if they work too much.
So, it really at times does not make sense to me at all. I understand that they are two hugely different departments, Centrelink and the NDIS but we see that it does not make a lot of sense when there is a disincentive to work or to build a business and I am trying to build a business as well, and make it sustainable.
I am also trying to navigate the complexities of living with people who aren’t my family and having two support agencies and having one that doesn’t allow the other into the house and the issues it creates can be complex as well, so we see that this is something that needs to be considered as well.
As I have talked about some issues, but I can’t talk about them on the blog one thing that I haven’t been able to talk about and still can’t is having conflict with support workers I will start talking about it soon and how to manage it as well as I am discovering that conflict resolution skills are needed as well when working with a support worker that has different world views from yourself and you need to be able to respect their world view, but I would say stay on the side of caution if you are hiring an independent worker to see that their world view is compatible with your own as this can stop a lot of conflict in its tracks so we see that it might not be a good idea to put a hard-line atheist with a Christian and part of the person’s job is to support them to go to church so we see that this could be an issue because people need to be able to respect their beliefs.
This has been a long and a bit of a rambling post but one that is needed to talk about reasonable and necessary for the NDIS and how it relates back to support work and how some service providers are really taking people for a ride, and we need to be aware of it.
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