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Too complex for care

CalmerkoalaSenior Contributor19 Apr 2025, 5:09 pm AEST

Too complex for care

I hate the word ‘complex’ but that’s how everyone labels me. Now my care has been terminated because the agency won’t support me because I’m too complex and have too many incidents.

When I was diagnosed with FND in 2021 I spent 9 months in hospital/rehab. I came home with inadequate support worker assistance. I now have funding for support workers 2:1 16 hour a day and 1 person active overnight. It’s great but my agency has just given 28 days written notice they have terminated my care.

I’m distraught, distressed, sad, angry and extremely anxious and overwhelmed. I don’t cope with change. How can a new agency find 20 support workers to meet me, get trained and start in so little time? The agency abandoning me hasn’t been able to permanently fill my roster in 3.5 years.

I can’t walk at all, fall with transfers, have 18-31 seizures a day, stop breathing almost daily and have several severe and complex mental health issues including schizoaffective disorder, anxiety, C-PTSD, BPD and sensory processing disorder.

I feel like a failure. A bad person. I’m also feeling guilty that my support workers have lost their jobs even though this is not my decision, but it is my disability.

the current agency can’t support mental health and say I have too many incidents.

Sorry, I just needed to vent and get support.

Has this happened to anyone else? How did you cope?

1 reply

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In response to: Too complex for care

JynxModerator19 Apr 2025, 5:43 pm AEST

Re: Too complex for care

Oh my stars @Calmerkoala that is AWFUL. I am so sorry that this systemic failure has left you feeling personally responsible (on some level) for the massive loss of jobs, and all that upheaval as well - which to me just shows an immense sense of compassion and empathy in you.

I know it's hard not to feel some level of guilt, but you don't deserve to carry that burden on top of everything else you're going through.

I wish I had some kind of answer or next step for you. Saying you have 'too many incidents' feels pretty unfair - that indicates you ought to be getting MORE support, not less! I hope some other community members can weigh in too, but I will just say that with big things like this, all we can do is just take things one step at a time.

Here for you along the journey 💜

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