How to Find an Aide--a Resource

Recently, I came across a really wonderful website on living and thriving as a disabled person, called How to Get On. It offers very practical advice about getting disability, living on disability, how to get on other forms of support, how to handle being homebound, and dozens of other useful topics. What most struck me, however, was its advice on hiring a home aide, which seems to me to be practical, grounded, and wise. Most of its blog posts on the subject are organized into a guide called The Self-Advocate’s Guide to Disability Home Aides. I am the front end of this process myself, so I can't say I've tried everything on the website already, but it tells many individual stories and offers many wonderful tips. Highly recommend for those who may be hiring a home aide (especially if for the first time).

I found another very helpful article at ADDitudeMag, a resource for those with ADD, on finding and using a virtual assistant. Some of its tips for using a virtual assistant might be helpful for those who need "prompting" (in the terms of the Shah protocol). It suggests that you can hire a virtual assistant to help walk you through some of your daily routine while on the phone with you. The author of the article has had experience doing exactly this. The article makes me wonder whether it might not be possible to hire a virtual assistant to "prompt" you through some parts of your daily routine, even through some ADLs, as a means of resisting or countering the "freezing" or "stuck"ness of catatonia. I have not yet had a chance to try this approach, but I am cautiously optimistic, and once I am able to try, I will update.

I will say that I have had less success, so far, with home aide agencies and with Care.com. The home aide agencies I have interacted with have wanted a lot of upfront paperwork and information, in order to put together a kind of bespoke package for me, and when I was trying to dig out of truly severe burnout, I was completely unable to sustain the kind of effort needed to hire and coordinate with a service of this kind. I suspect that a good home aide agency could be wonderful, but I know that many such agencies have high employee turnover and are very expensive. Care.com--a website recommended by some--has a membership fee, and it also has a reputation for connecting clients to workers that no-show. The website itself doesn't do anything to screen or vet the care workers, and I found that most workers on the site had no or almost no reviews. At that point, I felt that it would be a better idea to hire someone from taskrabbit to come in and clean and maybe make a week of meals, assuming I was making the hire at a time I was still able to feed myself/move around; and, if not, to resign myself to another hospital stay. 

Much better, I think, would be to hire and train an aide in advance, before the catatonia had gotten severe, to forestall the really acute form of the condition. Many aides could be trained to work as "body doubles" or ADL "prompters"--a kind of assistance that I discuss, very loosely, in my discussion of Shah's work on Implementing Immediate Support.


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