What a support worker can do for you and what the can't part one my story with support

 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 needs to have excellent soft skills in that they need to be able to know when to push a client so having active support and when not to push a client because the client can push themselves.

 There is a time and place for this passive support, and it is a very fine line to walk because people are very quick to assume that a support worker can do lots of things that they actually can’t. This can vary from support workers to support workers within organizations as well. As it needs to be on a case-by-case basis when collaborating with the clients and having clients that are willing to work with support workers and to be guided by them makes a support worker’s job a lot easier.

 it can be hard for some clients when they don’t have a consistent care team, but the support workers do have rights and responsibilities that need to be respected and we need to be aware of this and work starting with the people supporting us in this area.

Having someone who is a mix of mentor, mother, shoulder to cry on and a taxi driver is at first very weird and can be overwhelming to people, and they can be or become in the cases of support worker-driven trauma, so trauma that is caused by a support worker such as denying them freedom of movement and lacking in the dignity of care so being able to have adequate food, water and freedom of movement, or being pushed to do what the support worker wants to do or needs to do rather than doing what the client needs to do for that day and often a client feels resentful as they have a right to be when they don’t get done what they needed to get done. 

This dives the client to become care resistant and this is what happened to me and I have been on a bit of a mission since then to be able to define what is good and bad support as it does depend on several factors involved so the ethics of the support organization and the support team that is involved, the ethics of the support workers the level of training that they have as well of the level of disability awareness that they have as well.

 As the person who is providing the support and we see that this is quite interesting as the awareness of support workers and what they do is attracting new blood to the industry on the surface this is great but in the long run it could potentially be harmful due to the fact that people need to be able to be themselves and feel safe with a support worker for a long time I haven’t felt safe with my community access support team and this is due to the fact that they where providing what was objectively very poor support, in that there was no standard team around me, I had support workers changed without my knowledge or consent, and I was verbally abused by a support worker who was gaslighting me about what I didn’t know but clearly did and this is the danger of having younger support workers supporting clients that are older than them if as often when they complete their training they feel they know everything there is to know about disability and this couldn’t be further from the truth due to the fact that people need to be aware of this we see that people do need to be aware that they don’t know everything and when it comes to support you need to be able to respect others points of view and this support worker clearly didn’t understand that this is key fundamental of not only good support but being able to get along with others in a democratic society. 

But we see that a good and well-trained support worker knows the difference and when to support a client and when to back off and let them figure it out on their own.   However a support worker needs to have a clearly defined role and this can be defined in several ways if you are through a provider it can be through a role description, or it could be through sitting down and working with a client to define what they want to achieve in that time and this could be things such as learning how to cook, sewing or even getting out into the community so doing basics such as grocery shopping. 

We also see that it’s not up to the support worker to ‘entertain’ the client needs to be able to define what they want to do each day and this might be for lower functioning clients attending a day service and it also might be going for a drive or in my case working on this blog and YouTube however I haven’t been able to effectively do this because I haven’t had a consistent care team.

   This has affected not only my life but my health and my family’s lives as well in that they have at times had to drop what they have been doing and take me to commitments that I had and this stems from the provider simply not having enough people to provide good support to the support workers from the office as they are let’s be very real playing god with people’s lives and are not listening to clients feedback and I have had to fight for this care and to even get someone to turn up who is interested in doing a decent job, sometimes people would turn up at the wrong house, be unbelievably late and I feel like I am a reasonable person but yes this is all behavior’s that I have seen displayed by support workers with this company.   However, it is not reflective of all of the support workers in this company.

I found out that the office would roster people on and that some support workers were doing massive amounts of overtime just to make sure people had support, and they got sick of the lack of support from the office and simply left to find more supportive companies and this was disappointing because I did get on with the people who were assigned to me and they understood my needs, however, I haven’t felt that my needs where understood by this company since late last year and I stayed with the company for far too long and put up with bad support.

I understand that people leave or go on holidays, but this was taken to the end in that there was very little communication and the communication I did have was very disrespectful to the point I felt like I was a number and not a client. Let me make this very clear that this organization, in the beginning, was fantastic but now due to a massive staff walkout in both the office and support staff leaving we see that they were simply unable to provide good consistent support, and this is what I needed good and consistent support from the same team.

I know that some providers will change teams around to prevent the client from getting too familiar with the person, but this can sometimes backfire as it has done here because the client has the right to leave and chose to have any service provider that they choose and this needs to be honoured, by the company.

So support workers can and can’t do can vary and this is what I in a very roundabout way tried to convey in this post I felt that I needed to make this public to hold support providers to account as it means that people then can look out for signs of abuse or neglect by support workers and this can often be the difference between life and death for a person with a disability that someone outside of a possibly neglectful care team sees that they are in pain, physical or mental or being neglected in another way and I need to make it very clear that this is not reflective of all providers but it more common that people realize as there is a lack of well-trained support workers and office staff that understand disability.