Advice

AilsaS

Hi everyone

I am 26 years old and living in my own flat with a live-in carer, but right now, I am really struggling to think positively. I have a disability called Quadruplegic Athetoid Cerebral Palsy which affects every muscle in my body and causes involuntary movements throughout my body. My CP also affects my speech, which means that I have dystonic speech. My main method of communication is verbal but I'm really struggling to get my current live-in carer to actually take the time to listen to what I am saying. I feel like she does not want to listen to me as she guesses what I want instead of listening properly. She is constantly on her phone as well. The last carer was just getting to know me and getting used to my speech, but then she had to go to another client. The current carer has been with me since Tuesday, so almost a full week now, so she should be getting used to my speech, but I feel like she doesn't want to listen to me. She comes across as not being bothered about interacting with me.

I really do love my flat, but I am seriously thinking about whether or not I would be better off in a supported living environment. Has anyone else been in this situation before? What did you do?

Those of you who live in or know someone who lives in supported living, what is it like?

Thank you

Sandy_123

Hi @AilsaS is your carer employed by an agency? Or employed by yourself. If its an agency can you get in touch with them and explain and maybe swap for someone else?

Hannah_Scope

Hello @AilsaS

I'm so sorry to hear you are struggling. 

I'm going to tag @Richard_Scope for his advice here too as I don't know much about support living with Cerebral Palsy. We do have a Cerebral Palsy section on our forum, if you wanted to ask anymore questions or have anymore queries  

Richard_Scope

Hi @AilsaS
I can understand that the current situation must be extremely frustrating for you. For a start, your live-in support should not be sitting on their phone all of the time.

First, I would address the issue with them. If that does not improve things I would contact their agency if they are employed through one and raise your concerns.

Do you own your current flat or is it rented privately or a social landlord? If it is a social landlord they may be able to suggest some supported living properties to you. However, if like you have said, you like your flat then I don't see why you should have to leave it when they could change your support.

newborn

Two things cross my mind: The carer is showing disrespect bordering on neglect. When 
someone is at work, they should not be on their phone.

As to the speech problem, have you checked technological voice assistance options?   
I'm thinking that not just for this carer, but for general interactions with the general public, if there is any way to boost your ease of communication, it would be worth the research and worth funding it and getting yourself fluent with it. 

By the way I can comprehend that you or others with speech difficulty would have a reasonable expectation that the people you meet should make the effort to comprehend you. The problem is, some people, with the best will in the world, may truly struggle, and give up,  particularly if they themselves have hearing difficulties.