Yay, it’s October and this means it’s time for Blogtober 2021. Last year, the prompts were based on song titles. This year, there are no prompts. However, Kate Motaung of Five Minute Friday also relaunched the 31-day writing challenge after a break last year and there are prompts for this year. The first prompt is “need”. We can do a five-minute freewrite, but I’m no good at sticking to five minutes or at not editing my writing.
Yesterday I had my care plan review. I was really concerned about my need for one-on-one support being reassessed later this year. Not that the care plan review would really matter for this or so I’m told, but now that we were all together (my home and day center staff, the behavior specialist and my mother-in-law), I wanted to raise the issue. It’s the behavior specialist’s job to write the reapplication paperwork and I questioned whether it sufficiently documented my need for one-on-one. To get things clear in my mind, I am going to write out why I need the support I need.
Firstly, I am blind and have a mild mobility impairment due to cerebral palsy. This, combined with my psychiatric illnesses, means I cannot move about outside the care home, or even outside of my room, independently much at all. This means that the staff need to be alerted when I leave my room looking for them, so that they can come out looking for me.
I am autistic. In my case, I get severely overloaded having to function in a group setting, such as at the day center. Even with noise-canceling headphones on, I still get distracted from trying to do things on my phone while there. Besides, if I do have functioning headphones, they will block out so much noise that I’m essentially cut off from my surroundings and can’t be alerted should something happen. This creates intense anxiety.
This anxiety also leads me to be unable to function on my own for long periods of time. I can, if I’m doing well, be left on my own in my room for up to about 30 minutes at a time. It doesn’t help that I know rationally that someone might be in the next room, because emotionally, if they’re out of earshot, they might as well be on the North Pole.
Autism also means I tend to fixate on routines. In my case, I tend to hyperfocus on the times my staff are going to leave me alone and this creates even more anxiety even when they’re still present. For this reason, staff need not stick to rigid rules of what time exactly they’re going to leave me, but rather to the order of activities.
If I’m left alone for prolonged periods of time, I can often feel incredibly unsafe and start to ruminate, which can easily escalate into self-destructive thoughts and actions. I may also run off in a fight-or-flight response.
I have complex PTSD, as well as dissociative symptoms. This means I can experience apparent age regressions. I get triggered very easily. Flashbacks, too, can lead to a fight-or-flight response.
Thankfully, now that I’m on the right medication, I don’t get as many flashbacks as before. However, I still do experience many serious behavioral issues that can be prevented or averted by the fact that I have one-on-one support most of the time.
I’m pretty sure a critical assessor would be countering that my one-on-one would not help me learn to cope with my anxiety. Thankfully, the goal of my long-term care plan is stabilization, not development. In other words, the original assessors for my long-term care funding did not feel I am trainable anymore. Otherwise, I would not have gotten approved for what is essentially lifelong care at all. The only thing is that my one-on-one care exceeds the care normally paid for by my long-term care profile. Oh well, let’s hope the assessor sees my need for it for at least another year.
A Multitude of Musings 
It sounds like you are clear in what you need. I am glad you are now on the right medication, it must be reassuring. Good luck. x
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It is definitely reassuring. I’m still not sure that, with the fall and winter upon us, I’ll continue to be stable on my current doses of meds, but I’m pretty sure my current med combo is at least working.
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Good luck! It sounds like you are on the path towards healing.
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Thank you. I hope and think I am indeed.
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You write so well! My heart goes out to you with you many struggles. I so impressed with your thoughtful inner examinations and humbled by your courage.
Thank-you for allowing others to experience your situation. It broadens our understanding. ❤
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Thanks for saying that. I’m glad I’m able to raise some awareness of what it’s like living with complex care needs.
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Thank you for sharing your story with us. It is incredible how much technology has come over the years, you have educated me because I didn’t really think about blind people being able to blog and do things on the computer. Please forgive my ignorance and educating us. I am so sorry for all your struggles, even just one would be hard, but to be dealing with so many. I hope your care comes through exactly as you need it to.
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Thank you so much for commenting. Yes, thanks to VoiceOver on my iPhone (and on any iPhone really) and JAWS on my computer, I am able to access the Internet and do blogging pretty much independently. I know at least in the United States, the major consumer organization of the blind, the NFB, claims that blindness doesn’t need to hold one back in doing whatever one wants. I must say that this might be true for those who are just blind, but for people like me with multiple disabilities, the effects do intersect. As the assessor wrote on my long-term care approval letter, if I weren’t blind, community-based treatment for my autism would have been more effective so I wouldn’t need 24-hour care for the rest of my life. In this sense, I’m so grateful we don’t have an NFB here in the Netherlands.
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I hope for you too that the assessor sees what you need. In Australia at the moment it’s a cost cutting exercise. So rather than to help the person, it’s to cut the govt costs. We’re in a very sad state of affairs if you ask me. I once read ‘There isn’t always a cure, but there is often a better’ somewhere. I think that sounds like it applies to your situation. I hope your assessor brings you a ‘better’. #Blogtober21
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Thank you. We’ve had at least three rounds of budget cuts to long-term care since I came into the care system in 2005, but thankfully the last one (the one introducing the long-term care act) was in 2015. Before then, you could access 24-hour care in a facility even if you didn’t need it for life. Now with the long-term care act, you need to make it reasonably clear that you will never be able to live in the community again. Otherwise, you’re at the mercy of the local authority, who will grant you access to 24-hour care only a year or two at a time and you need to go into a facility within your area. Back in 2019, when I applied for long-term care, psychiatric illness was exempt from qualifying someone for long-term care even if it was pretty clear they’d need it for life (for example, if they had severe, treatment-resistant schizophrenia). This is why I had to jump through all kinds of hoops to get my funding based on blindness. Thankfully our last round of changes was a positive one, in that psychiatric patients who meet all other criteria for long-term care can now access it. Here’s hoping your state will see sooner rather than later that massive budget cuts won’t help in the long run.
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It seems that despite your difficulties you are well aware of what you actually need. I just hope you get the help that you require to keep on the right path. It seems that you have people on your side right now, I hope it continues.
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I hope so too. Thank you so much for stopping by.
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Fortunately you know what you need and it seems to be working for you. I’m sure you’ll be able to continue on the right path.
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Thank you for your vote of confidence. I’m hoping you’re right.
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Nice to meet you. Thanks for this insight into your life. I’m glad you have a clear understanding of the support you need and hope your assessor sees the need and rewards appropriately. It’s a shame that those who need support often need to fight for it because of budget cuts etc. I hope you get all you need xxx
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Thank you so much. Thankfully, I don’t need to fill out the application paperwork myself, but the whole thing does worry me.
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So glad that you get the proper support. Your honesty is always refreshing. Enjoy the rest of your Sunday. x
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Thank you so much. I’m glad you appreciate my honesty.
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I’m sure they will see your need for it astrid! Fingers crossed!
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I really hope so too. Thank you.
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