I’m wondering if it’s normal for a support coordinator to ask for personal documents like my medical records, particularly a summary of my therapy sessions. She mentioned it could be helpful for my upcoming review, even though she’s already aware of most of my situation. I’m starting to feel a bit uncomfortable, as it seems like there’s no privacy at all once you get involved with services like this. It feels like so many people now have access to details about my life and I’m struggling to keep my sense of autonomy.
At first, I was encouraged to take a short break, but now my support coordinator is saying we’ll have to wait for new guidelines before making that decision. This change in direction has made me second guess whether this whole process is actually benefiting me, as it seems to be lowering my confidence rather than helping.
Has anyone else had similar experiences? I'd love to hear your thoughts.
The support coordinator doesn’t automatically have access to your personal notes unless you consent to it. If they requested a report from your therapist, it should be for specific purposes like funding justification or monitoring progress. However, the therapist should only share information that’s relevant to your support plan and it’s not typical for them to disclose personal details unless you’ve given permission. A good SC should respect your privacy and only request the information necessary for your plan reviews or funding renewals.
Every support coordinator is different. There are some who plod along indifferently just touching base now and again. There are some who are purely reactionary, only doing anything when prompted. Then there are proactive ones trying to stay ahead of things.
I would say yours is the proactive type. There are reasons that they will ask for certain reports and things from you. Sometimes its to track budgets, sometimes to try and help you secure more funding, sometimes to gain a better understanding to source more tailored supports and information for you.
It can feel invasive to share those things, and to make it absolutely clear, you are within your rights to refuse. Choice and control.
If you are unsure you can ask them to provide a more in depth reason for why they would like a copy and then decide whether or not you are comfortable sharing. You also have the option to get the report yourself and redact the parts you don’t want shared. It is entirely up to you but there are benefits to having knowledgeable advocates working for you. Knowledgeable in everyday you, not just NDIS and its systems.
Understandably, a case manager might want to have a progress report for planning or funding reasons. However, they must be transparent about why they need specific information from your sessions. If they’ve requested a report from your therapist, you should ask them what exactly they’re looking for. Your therapist can share general progress updates without going into personal or sensitive details that you haven’t agreed to share.
It sounds like there may have been some confusion or lack of communication around what’s appropriate to share. Your support coordinator should be requesting reports that align with your support needs, but they shouldn’t be seeking private details without your consent. If you’re unsure about the report request, it’s a good idea to ask both your support coordinator and therapist for more transparency about what will be shared and how it’s related to your ongoing support.
It’s concerning to hear that your support coordinator might be overstepping boundaries, especially if they’ve shared personal details with other professionals without your explicit consent. You should feel comfortable with how your information is being used. If something feels invasive or uncomfortable, have a conversation with your case manager about what’s necessary for your support plan and what should remain private. Your privacy is important and it’s okay to assert that.
Oh, I see, that makes a lot of sense @Lauren. I get that the reports might be needed for funding or planning, but I think it’s time I ask my support coordinator exactly why she needs them. I’ll also check in with my therapist about what’s being shared. It’s reassuring to know I can still have control over what gets shared and it’s comforting to know I can set boundaries and ask questions about my privacy.
I hadn’t thought about getting the report myself and redacting parts I’m not comfortable with. I’ll definitely keep that in mind.
100%, if it is about you, it is yours to view. That includes support worker notes written about you. Some companies don’t like participants asking and will try to talk them out of it. But the notes are meant to be professional and factual so there shouldn’t be any surprises in them.
Sharing of your information is always subject to your choice and control. Put your requests for information in writing in case anything comes up because paper trails help keep people accountable.
Hi @Sophia11, this sounds tricky. Similarly to what others have said, I’d encourage asking for more information and asking questions about what information is needed- you’d be well within your right to ask these questions. It is your story after all, and you should be able to determine who it’s shared with, and what parts. Another possibility is working with your other supports to create the reports needed- my personal support team often discuss with me what they’re planning to put in and check in to make sure I’m ok/ happy, which also gives me the opportunity to guide them a little with what I need.
Something else to keep in mind with the reports for review process though is that the nature of reviews means that for you to have your best chance, the reports will likely need to paint a picture of you on your worst day, and sometimes, the consequences of not having support (again, worst case scenario), which can be confronting to look at. When this happens for me, I try my best to keep that in mind, as hard as it is. Here with you though- feel free to keep us updated and reach out with any other questions you have. All the best with it
